Forum & Feedback
In solidarity…
Forum & Feedback
I was initially hesitant about opening this blog to critique and feedback. I have had a few negative experiences in forums on other sites. I do realize how needed this page is and have decided to open this blog to all. This is an attempt to have a free informational site where I can share successful protocols and hopefully spare others the negative experience I’ve had with Morgellons and unsuccessful treatments. Be considerate when posting here. We all have suffered poor treatments and bad days. Remember to be supportive and respecting of others here. Lets all share what works.
Posting Rules:
- Please submit comments about new treatments or other protocols for consideration. These will be reviewed before publishing.
- Personal stories that are excessively morbid, negative or abusive will not be published.
- Feedback on this blog for consideration will be reviewed before publishing on this page. Feedback is welcome and necessary but please use good judgement and constructive feedback.
- Posts that link to another protocol and or website will be reviewed before publishing.
I am not responsible for information shared on this page. Be aware that some theories about Morgellons, Morgellons treatments and suggested products may be untrue or negligible at best and may cost one much wasted money, time and effort. Please realize that some people may post here solely to draw you to another site. I suggest carefully researching any information (mine or otherwise) on search engines before investing time, money or energy into it. Morgellons forces a new kind of responsibility onto all of us, research and self reliance.
In addition to this public comment page I may be reached at MorgellonsAid@gmail.com.
Wolfe
Morgellons Aid 
Aug 18, 2010 @ 22:17:12
Hi Wolfe,
Your blog is a welcome site. I feel the more information I can gather the better. It helps talking to others and feel less isolated.
I would love to try the sulfur soap and ointment but have not found any in Canada as yet. I recently spent a fortune on (shipping was as much as the shampoo cost) 2 bottles of Jason’s Dandruff Relief Shampoo whic has sulfur in it. Any other Canadians out there?
Nov 02, 2010 @ 14:47:14
I have something to share being a fellow morgy 2 yrs ago when mine started I had just moved into this old home and started a new job at a custom body shop. For 2 yrs I couldnt for the life of me figure out where I came into contact with this nightmare. I have since moved out of the house about 6 months. My son lives around the corner of the old house so when I go see my son I pass by this house (about once per week). The house was empty for 3 months before it was rented out again so within 3 months I have driven by this houes only to see what seem to be my life flashing by me. Every week there was something new on the porch to be aired out such as area rugs throw rugs, etc.
So the other day I saw mattress and box spring so I had to stop and speak to these people to offer some info. and suggested websites. When speaking with this woman who lives with a roommate with their children total of seven occupants. When she answered the door it was like looking in a mirror then she informed all seven have the same condition.
To my horror their skin looked just like mine. I’m going back today to give her this website.
Nov 04, 2010 @ 01:10:28
Hello, We had a person live in our home before we knew we had Morgellons and he had a 200 pound dog. Within 2 weeks the dog caught what we had. Also when we first got this, we had rats in our shed. We went into shed and got some wood and then we had rat mites (We had microscope) that were on my husbands head. That night we got bit on our feet while sleeping. We found genetically altered mites which were alot smaller than rodent mites in bathroom wallboard that were eating the bigger rodent mites. We cleaned out our shed and found a rat pelt with fibers growing out of them and the bones of the rat were completely gone. Pretty scary because it seems that these Morgs eat our bones!!!We have 6 videos on youtube listed under faithfulandtrue123 showing the morgellon entities that we are dealing with. We even have two of them moving and one throws out biofilm. May God help us all!!!! We all need help and are suffering terribly. My prayers are with each and every one out there who has Morgellons.
May 11, 2011 @ 18:30:32
Yes , where are you?
I just moved from BC to Windsor Ontario..guy friend in Detroit.
Eileen in Edmonton..posts on the Morgellons Compassionate Support site.
There are many others..not all want to communicate on the internet..you are not alone. It’s a challenge finding cheaper ways to do things..and stuff is more expensive in Canada..even at the Walmarts..plus not everything is available.
Whole Foods if you have one near may be willing to get some things in for you.
It is expensive..lots of cheap dollar stores carry the stuff a lot of people use.
Swansons has the cheapest vitamins and oils. Mountain Rose is good for high quality stuff like menthol..same price as in the States right now..they have to order on the net too.
Nice to meet you
Sherry
Sep 14, 2011 @ 16:40:04
Hi all.
Just wanted to drop in some information.
Try beeswax on troubled skin. I’m getting dramatic results.
I had four (self aggrevated) lesions that weren’t responding to anything I tried.
It didn’t help I was digging around in there with tweezers.
Last night I tried applying a thick coat of beeswax and covered it.
This morning the lesions were looking better and the beeswax was litered with fibers.
Also…here’s a poultice from a scientist in Canada that’s getting results:
Mix 2 tablespoons diatemateous earth with water to form a paste.
Add 2-4 drops food grade H2O2
Add 2-4 drops any essential oil….St Johns Wort works well but many others work well
Apply paste to skin and wait for a time….20 minutes.
Scrape off and a layer of plastic skin underneath should come off as well.
I have not tried this….but he’s very excited.
Good luck,
Catherine
Nov 06, 2011 @ 20:19:59
HI SHARON, I KNOW THIS IS KIND OF LATE BUT JUST WANTED TO TELL YOU, IF YOU HAVE NOT FOUND THE BARS OF SULPHUR SOAP, YOU CAN GET IT FROM THE “GENISIS WEBSITE” I BOUGHT SOME AND EVEN USE IT TO WASH MY HAIR. I HOPE THIS IS NOT TOO LATE TO HELP.
GOD BLESS (ANGELBLU)
Dec 06, 2011 @ 15:04:24
How are you now..i’m from Canada too had to order that sulfur soap on the net. You can special order it in some pharmacies..but it’s $6 to do it that way at Shoppers. It’s a year later..con’t know if you are still connected to this blog site.
Wish you well
Aug 18, 2010 @ 22:19:13
p.s. that ctrl+ hint for enlarging print size on your screen is a great tip, thanks!
Aug 18, 2010 @ 23:19:05
Thank you Sharon,
Shipping can be expensive. Vitacost is an excellent supplyhouse and often has great sales. You may even qualify for free shipping with a large enough order.
Wolfe
Aug 19, 2010 @ 12:48:22
Hi Wolfe,
Great site, it concurs with all that I have discovered. Thank you for the great effort in assembling this excellent site. No doubt you will help many people, including me. I especially like the clear presentation of detox information, and the simple inexpensive natural products listed.
Thank you so much!
Aug 19, 2010 @ 20:05:30
Hello Wolfe, I’m fluffybizwriter from another forum in which you welcomed me. Thanks for inviting me to your site. I will definitely be exploring the many fine posts and information you’ve assembled here. Thank you for creating for us all struggling with whatever this is.
Aug 20, 2010 @ 00:05:20
This is a wonderful site, Wolfe. It’s laid out well so any simpleton like me can find what they need, lots of good info and it’s pretty. Hey, pretty counts for a LOT when you’re feeling like worm poop warmed over twice. Thanks for your hard work. And if you get any mouthy negative types, just slap ’em upside the head. I just added you to My Favorites.
Aug 22, 2010 @ 12:43:49
re: Faces of Morgellons
Hi Fellow Morgies;
Mr Common Sense from the Mundane Approach on WordPress is putting together a seven minute “Faces of Morgellons” video in order to establish public awareness. It will require a photo, first name, city, occupation (homemaker counts) and a quote. Check it out. I sent my info in as I feel the stigma must be lifted from this scourge. We are treating ourselves like lepers.
What say you all?
Aug 22, 2010 @ 15:13:31
Excellent project from an excellent site. I thought I would post this url for those interested.
Wolfe
Aug 25, 2010 @ 03:28:38
Yeah great board ya got here, will be checking in often. Thanks for opening it up. Good luck to all here.
Aug 25, 2010 @ 20:38:51
No comments on the Public Awareness Video?
Sep 02, 2010 @ 05:10:14
Greetings!
I want to wish you the best in running your site.
Its really beautiful and well thought out.
Thank you for helping all our brothers and sisters with
morgellons by serving in this way.
All my best to you!
God Bless you
Pamela Mae
Sep 13, 2010 @ 04:40:06
Hey Wolfe
God bless you and thank you, it is clear, simple, yet comprehensive, informative and easy to reference, I find a huge hurdle in following many protocols, ect, is that nobody ever really makes it this easy to follow and take in.
Is there somewhere here, one can tell what they have done and what has been successful and more importantly, i am finding that I can not get good feedback about children who have this.
I am not sure if people are hesitant to even admit their children or grandchildren have this or if they are in denial, that they do, I understand the pain of even trying to contemplate this, but there are some who say there kids have it, but you never hear how it effects the kids or about their symptoms, etc.
I even emailed Mary Leito and she, understandably, is so busy, she has not gotten back to me about the effects of this on her children.
I see many grandparents with this, as this seems to be the main age group, who avoid their g/children, as painful as this is to do for me, i worry of the dire effects it has on my g/children, I was a very prominent part in their life, a balance you might say.
If we could ascertain, how it may be more likely to be passed on, other than the obvious, insect/arthropod vector or sexual transmission, we may be able to have more time with these children who need us.
Once again thank you Wolfe, you are a God send.
Luv Jodie
Sep 13, 2010 @ 16:39:09
Hello Jodie,
Thanks for the kind words. I often wonder how people deal with the contagion factor too. It is uncertain but I believe in addition to the insect/arthropod vector and sexual transmission there is the open wound/lesion factor. I do not have a certain area on the blog for others to report their successes or failures with treatments. I would be happy to post the results here on a case by case basis. Good luck and stay strong.
Wolfe
Oct 29, 2010 @ 04:26:54
Hi Jodie,
I’m in sort of the same boat as you regarding my family. I’ve been experiencing symptoms now for about 6 months and both my husband and son have none. I’m very worried that they can catch this from me. I distanced myself from both of them especially in the beginning when I was misdiagnosed with scabies at a walgreens quick med clinic. (Told my young son I had poison ivy and he had to stay away from mommy until I was better.) I can’t begin to tell you the emotional and physical stress this has placed on my family, but I’m glad to have found Wolf’s site and hopefully I’ll be able to get more in sight on everything I’m dealing with right now. So please if anyone has any info. on passing this terrible (disease?) on to close family members………………Help Lisa
Oct 30, 2010 @ 20:07:30
Hi Lisa
I can only tell you what I did to get (hopefully non-contagious) this will probably end up being a long one, sorry, just hope it helps as being kept away from our children is the most unspeakable and evil part of this, as far as I am concerned.
I obviously stayed away while I was itching and crawling (fibreglass feeling under the skin) FFUTS) which no amount of perm creams, (scabie creams) helped.
I finally found a Derm Doctor (DDs) that wasn’t as ignorant and arrogant as the previous DDs to infestations of Arthropods on and under the skin, he prescribed sulfur (5%)which the Chemist would make up, we would cover ourselves in this for days (3-5) at a time, regularly topping up, bath and redo, we did this about 4 times, we also took Ivermectrin this stopped the (FFUTS) completely for me, as I was in very early stages, it settled and lessened my husbands alot.
We took Epps n Salts baths every night for at least one hour, we sometimes add Borax, vinegar etc.
We still had systemic parasites at that stage, i, by this time had researched and knew it was Morgellons, so with the help of much research and from two ladies, that I found on the internet, who also got Morgellons from Bird Mites here in Australia, began a protocol of which I will tell you all now.
We did a thorough Colon Cleanse, (a good one will shoot everything out of you and you will do this every day for a week and then slowly cut back over time.
We took
Liver Detox
Vitamin C
Olive leaf
Lysine
Multi Vits
Gut Flora
Enzymes
We ate really healthy
No sugar, processed foods, yeast, dairy, etc No salt, except Himalayan
We ate heaps of apples, paw paw, kiwi, pinapple, pumpkin, leafy vegetables, eggs etc
We put heaps of fresh Garlic and Ginger through all of our meals
As well as many other natural Fungicides and Parasite killers.
Once we had detoxed our colon, gut and liver thorougly we took
Flagyl, followed Ivermectin and then followed by Doxy, we took many weeks of Doxy, as we probably had Lyme so we didn’t want to short cut and not kill it.
These cleanses and supplements got rid of all of our bowl and gut parasites, the antibiotics, got rid of them in the muscles/bones?stopped the atrophy and acute pain in my husbands right side and stopped both our joint pains.
Things stopped hatching out of hubby and he stopped calapsing and being rushed to hospital.
We were washing/treating our clothes with flea and tick killer as well as things like bleach etc, we now use normal washing powder and Borax and sometimes Caneston.
We however still had a problem in our car and living environment, which I felt if it was contagious or infectious to us, it would be on us and go to our children, as it kept reinfecting us, no matter how much we cleaned or sprayed pesticides, we still had many hot spots in the house and car.
So I still wasn’t comfortable going near my children and grandchildren, so with much more research I discovered just how imperative, the fungicides/anti fungle treatments were. Internally/externally on us and in our environments.
I believe that once these Arthropods have vectored you and you have gotten rid of them, they leave a systemic fungus disease behind which needs to be eradicated with antifungles.
We threw all of our clothes away, (kept a couple of very well treated items only, we threw all of our furniture away, kept glass and metal only, we sleep and sit on canvas camping beds and chairs, which we treat, mostly with Borax and Epps n Salts, previously with pesticides, these are easy to treat, unlike mattresses, lounges, fabric chairs, etc.
I purchased large quantities of Borax and we had our pesticide man, who had professionally done our pesticide sprays twice in 2 months, including Gasing, on top of the many pesticide treatment we did ourselves over many months.
(This is necessary, not only to kill the parasites that have infested your home from your body, but also to avoid any further bites, as the bugs will be very attracted to you and your house, while you have this disease), We had him put Borax all through our roof and crevices, outside etc, we sprinkled it all through our carpets and sprayed it all over the roof and walls, we also do this with Epps n Salts.
Please note, we always had our garage and car treated at the same time as our house, eg, we left it all opened and had it gased and pesticided at the same time, we also put the Borax though the car regularly after thorough washes and details.
You will be wasting lot of valueable time and money otherwise
This all took 7 months, initially it all seemed to much and suicide was plan B, but how dare I leave my beautiful grandchilren and children to fight this when I can fight it for them.
It is now maintenance and upkeep, which is no where near as daunting.
Over the last couple of months, i also did my daughter house and car, to make it Morgellons unfriendly, now I am about to go back to work shortly in order to make money to keep my children healthy, this is a rich man’s disease.
I also want to be able to afford to assist others financially who are suffering with this. We all need to be loud and educate as many as we can on this, don’t let them scare you into being secretive about it, this will not help our children or others.
We over time introduced:
Pau D Arco – Fungicide
Fish Oil
Colloidal Silver
Garlic Caps
Vit A and Bs for skin
Black Walnut caps – to keep the parasites away from the bowl.
We from time to time take ACVinegar.
God bless you Lisa and you will get back to your son, treat his and your husbands stuff as if they have it, get as much of the supplements and healthy food into them as possible. Them having good immune systems and getting the PH balance in check, can work as a barrier/sheild against this disease.
Other precautions I take even now, when I am touching my grandchildren, long sleeves and disposable gloves. I never touch them wet or sweaty, no mouth kisses anymore and I do not eat or drink out of the same things.
If I bath them, i wear gloves and put Epps n Salts in their bath as a barrier.
Try to keep bodily fluids at the moment to a minimum, and don’t eat and drink off each others stuff if possible, don’t bath in same baths.
(Me and hubby still don’t touch at all with bare skin)
This is better than when I didn’t see my kids at all, I now give them big hugs and kisses with my long sleeves, usually hoodies on.
Don’t hesitate to ask me anything, anytime, i will elaborate as you wish.
Luv and heartfelt best wishes
Jodie and Brett
xxxxxxxxxxxxxxx
Nov 04, 2010 @ 14:25:52
Jodie and Lisa,
I feel for you both. I have gone down the same route, with success though I offer this to you. In my opinion, Jodie’s extensive protocols and regimens are appropriate and illustrate how thorough we must be to overcome this affliction. I believe she is correct in her approach though I would caution against the environmental poisons/spraying and flea and tick killers, along with gassing that she has used. There are less toxic ways, mainly the use of diatomaceous earth, to effectively deal with these issues.See post https://morgellonsaid.wordpress.com/environmental-cleaning/. We Morgies must be aware of and consider Multiple Chemical Sensitivity. M.C.S or T.I.L.T. ( Toxicant-Induced Loss of Tolerance) is a chronic medical condition characterized by symptoms attributed to exposure to low levels of chemicals.
I have written about this subject in the post Environmental Cleaning/Non-Toxic Household Cleaners https://morgellonsaid.wordpress.com/environmental-cleaning/non-toxic-household-cleaners/.
Also be aware that biofilm in the G.I. tract may “protect” pathogens from the use of antibiotics and result in pathogens that are immune to the use of antibiotics. A thorough detox/cleansing protocol should be followed and antibiotics should only be used as an extreme measure. Eliminating the internal biofilm is extremely important as antibiotics may actually create a more difficult problem if the biofilm is still present.
God Bless,
Wolfe
Mar 09, 2011 @ 07:58:12
Hello, I am also new to this blog, and can relate to all of those suffering from this evil. I have had Morgies for 6 years, wanted to answer question concerning the children in the house. I have 4 at home and none of them including my husband have any symptoms at all. I’m very thankful for this and feel that certain people must either be immune to Morgies or possibly it is not transferable to others. I’t might just be, that whole families catch it together as a family, if caught by just one member it might not be passed on. This is just a theory from my experience. Take-care D.
Sep 13, 2010 @ 04:52:08
hey its me, janedoe. i see several people i know, cool!! ok, im gonna wander around a bit and check it out
Sep 13, 2010 @ 17:33:39
Hi Wolfey,
Wanted to stop off and say Hi! and check things out again!
We have a very wonderful mutual friend who is very close to my heart 😉
You have done a terriffic job of presenting ‘Good Science and Sound advice’
Keep up the good work.
Do you have any where to caution everyone that Morgellons is a balancing act? This is where the testing from either GPL or MEtametrix is so helpful.
It puts toghether all you have here in one neat little picture.
Shows which compounds in the body need balancing,which bacterias are over grown and if there is also over grown fungus.
Too much cleansing can be hard on a morgie if everything else is not balanced and if they go at it too rigorously,due to the fact that us Morgies need help in ‘Clearing pathways’
If we detox or cleanse too rigorously then our ‘Pathways’ (kidneys,liver,etc) cannot rid the body of the toxins.
Even sometimes when we are very sick when we do a ‘Light’ cleanse we may need help ‘looking at compound levels,clearing pathways,and knowing which helps where and what to use.
Its just my thought process-hope its allright to mention.
You are doing a great job- varying ideas go along with the ‘TURF’ 😉
If we all put our hearts and minds together,some of what we share will be helpful for all of our Morgellons friend.
God Bless you
Pamela Mae
Sep 13, 2010 @ 18:57:36
Hello Pamela!!!
We have spoken once before on a different site. Say hello to our mutual friend for me. She is a wonderful human being. Thank you for your comment on the blog. I am striving to list treatments that I have personally tried and have had success with. I believe that all of the treatments listed here are safe and will not harm the body. I do appreciate your comment on the simple fact that mitigating Morgellons is a balancing act. I stress quite often within the blog that the cleanses listed here must be done concurrently with topical treatments and with immune system building. I also emphasize that a certain order of cleansing be followed to clear the body’s organ systems. This will allow the toxins and waste released during the cleanses to be flushed from the body in a manner that will not overload or overtax the body. Optimal health is a gradual process and through proper nutrition and gently assisting the body it is possible for us all. I really enjoyed your radio interview by Sue Vogan with Nancy Gubertii and Ayla on “In Short Order”. It was very informative. The link for anyone interested is http://www.blogtalkradio.com/in-short-order.
Thank you and God Bless.
Wolfe
Sep 13, 2010 @ 22:08:49
Wolfe,
That’s great !
I also really enjoy the beauty of this site.
Yes,our mutual friend is the ‘best’ – a class act.
Thanks for your kind compliments,it is my desire we all
work together to help our morgellons friends gain their lives back once
again.
So very glad you listened to the Radio show,but don’t embarrass me ..I get all kinds of stage fright…the other girls were the show.I am grateful Gods got our backs.
I think the M.A.P. packet would be beneficial for your site!
I told Ayla so.
Bless you Wolfey,
Pamela Mae
Sep 14, 2010 @ 19:07:54
Thank you for providing such an informative knowledge based website, I have started reading it. I will take my time learning more through the information you provide.
🙂
Sep 19, 2010 @ 05:54:33
Hello Wolfe! Great suggestions and supporting information. You’ve gathered the sensible, ‘tried and tested’ treatments, that are accessible to all. Good job!
With respects, Jo
Oct 03, 2010 @ 21:53:43
Well now……..Wolf,….just been checking round,..I sure could use some homemade household cleaners,.thanks for the hints,.I kinda like the place,…I’ll be back to check out more helpful hints,..with C.F.S. & Allergy’s I’ll need as much help as I can get.
Oct 11, 2010 @ 11:22:01
Wow! Very impressive blog.
You have a gift for making very complicated things simple. It is apparent that you have “done your homework”. Very few of the conclusions drawn here may have notable exceptions, but this site is a blessing to all who seek a better understanding of vital health processes and choices.
Most of all, I applaud your leadership in demonstrating for others the necessity of taking responsibility for your own health. In overcoming your health challenges, you are transforming suffering into blessing as you educate and empower others to do the same.
Thanks again, and keep up the good work!
Warmest Regards,
John Burgstiner
Founder
Logos Nutritionals
Oct 13, 2010 @ 13:19:46
Thank you so much for taking the time and having the knowledge that this skin disorder is very frighting. I myself have been dealing with this for two years so I’m ready to read what you have and look forward to trying some of what you suggest
My prayers have been answered I ask our Dear Lord to guide to help myself with this and within ten minutes I was on your website.
Thank you Belinda Bryan
Oct 27, 2010 @ 08:04:42
Wolfie! Somehow I missed the blog portion of the site.
I love what you’ve done here.
Great solutions for healing and a big asset for the community—especially for those that have a limited budget.
I appreciate the clear layout of the cleanses with particular stress on the order in which they are approached. This is a much needed compilation of information laid out in a way that many will be able to understand and implement easily.
Best of luck with it and big virtual hug. You rock!
Oct 27, 2010 @ 11:33:54
Great web site a lot of info for someone like me who has had this terrible afflication for one and half years We all need any help we can get thank you
Oct 27, 2010 @ 17:04:33
Hey ho Wolfie,
We want to reference your site on Morgellons Focus on Health!
I like the way you monitor your site and it seems very peaceful.
We believe our Morgellons friends need a sense of community and especially those struggling with feeling isolated.
We also think you are doing a good work.
Let us know okay?
Pamela Mae
Oct 29, 2010 @ 15:23:10
Thank you Pamela,
Please feel free to reference Morgellons Aid on Morgellons Focus On Health.
I hope to help others with the sense of community you’ve mentioned.
God Bless
Wolfe
Oct 30, 2010 @ 15:26:44
why……… Wolfe,.seems y’all are doing a great job in giving the right help to folk’s,.that is very much in need for their well being,.keep up the good support work
Nov 03, 2010 @ 16:35:38
Beautiful banner, background and presentation. You put a lot of work into putting this together. It is really wonderful to see the easy layout, that information is so easily accessible and in one place. I will be back and do more reading,
Blessings to you for all good things …….
sky
Nov 05, 2010 @ 05:49:34
Dear Wolfe,
This site has made all the difference in the world. I am deeply grateful, and can only imagine what it might have been like, to be one of the pioneers, before people understood what was going on enough to know what can help, at the same time that DOP was a real risk by being open with doctors……
I wanted to offer, before this crazy body bug struck, I taught self help acupressure. There is a good self help for supporting what Pamela calls the detox channels… We call it the hospital flow, as it helps the kidney, liver, spleen, after being exposed to anesthesia. You hold opposite fingers and toes. So, Left big toe and Right little finger. Then Left index toe and right ring finger. Left middle toe and right middle finger. Left ring toe and right index finger. Then Left pinkie toe and right thumb. Its kind of a dozey to get into the positions sometimes, but it does help.
Not just that, but since we are all touch deprived! Self help acupressure can be a relief of sorts… the best thing is just to try it. A lot of times you’ll just fall asleep, and that is good. Anyway, I just wanted to share that….. there are other self help acupressure recipes… some for the nerves/spine, some for lymph/auto-immune… if anyone wants them, i will wait to be asked, because I really just wanted to say thanks, but its something I can share, that might bring some comfort.
I don’t know what will happen, in the end…. if lots more people will get this, or if there will be an answer, but if we are all together, it makes all the difference.
JD (short for Jane Doe 🙂 )
Nov 05, 2010 @ 14:24:18
Peppermint Patty
Last night I had those weird feelings in the back of my throat, like a piece of celery or a hair was there…. and I tried something, which seemed to quell it.
I put a few dabs of peppermint essential oil on my nose and a bit kind of
on the bottom of my nose, so I could get it in the nasal passage. After breathing it for a few minutes, it stopped. Ultimately I want to get rid of that….whatever it is, but in the moment, the peppermint did the job. Also I have taken to sprinkling it on my socks or on the inside of my shoes. It seems to stop the sensations. I’m using Dr. Brauner’s peppermint in the laundry now, its harder to tell if that is doing the job, since I am reliant on extreme kleen, but it feels good to wear the smell, like a security blanket of sorts.
I’ve also started putting peppermint in my cocoa.
I realize cocoa can be a no-no because of ph. But I feel that I have created a recipe to compensate…. 🙂 And I drink high ph water all day. I need some little treats to keep going….. I use put 1T of diatomacious earth, and 1-1.5 T of organic cocoa, add hot water, then add a 1tsp to 1T of organic virgin coconut oil, which is a nice flavor too, and if you need milk, for me, the almond milk is good. soy, rice, milk all set it off…. As the winter is approaching I tried adding a tiny dab of peppermint. It was so nice … just to have *something*. We’ve given up so much. Next I will try adding a bit of cinnamon instead of the peppermint. And maybe some fresh peppermint tea…?
I learned I can cook and eat with buckwheat. Buckwheat is a grass, related to rhubarb, not related to wheat at all! I tried making buckwheat biscuits… I’d like to find something I can make which is like a bread, but so far the biscuits are way better than nothing. When this first happened for me, I couldn’t eat hardly anything. Didn’t have a clue what to eat, it was awful. So now that I Have this basic buckwheat biscuit… Use coconut oil instead of shortening made with corn/soy, and I use almond milk instead of milk, and I use no sugar, but maybe stevia or xylitol might be good?, and I vary it …. so I don’t get bored and have something to look forward to…. I made “savory” biscuits – with chopped cilantro and black pepper. Then I made lavendar biscuits. I suppose you can make peppermint biscuits?! It was wonderful just to find any kind of biscuit, because right now, its no crackers, no chips, no bread/croissant/pastry, etc. The coconut oil should be softened a bit. And the biscuits are *quite* dry, but perhaps adding an egg, or adding “agar-agar” which comes from seaweed, can make them more like the real thing.
So that’s our peppermint report from the cooking corner. 🙂
Nov 05, 2010 @ 14:41:45
Hi JD!
Try using an old chapstick tube that has been carefully washed out… fill with a cottonball and add peppermint or your favorite essential oil. Instant inhaler with no mess. I think your buckwheat idea is great. We should all avoid the five white poisons… white sugar, white salt, white dairy (milk), white flour (processed) and white fat (or refined/hydronated or transfat oils). We all need to have special treats… I like Chai tea with almond milk, I’m going to add some cinnamon next time. My body absolutely craves fresh juices too. They are so good.
Wolfe
May 18, 2011 @ 16:00:14
Hi JD,
Your peppermint patty post has been a life saver! It seems to me that you are recording your experiences with food. I am too and I would love to share them with you and learn from you.
I’d like to be in touch and with anyone who is keeping track of foods and how they affect symptoms.
Nov 11, 2010 @ 06:39:48
Quick question on the mucoid plaque cleanse….
The pancreatin I got in the mail today is made by “source naturals”, its called Pancreatin 8x. I am wondering what the concentration is for the one you have in the recipe here, since the name of the one I got says “8x” ?! It says on the lablel: Protease: 200,000 Lipase:36,000 Amylase 200,000. I guess I need to become educated about enzymes to understand this… I take it all these come from the Pancreatin.
JD
Nov 11, 2010 @ 15:52:05
Hi Jane,
Source Naturals is a good choice. It has about twice the Protease (which digests protein), Lipase (which digests fats) and Amylase (which digests carbohydrates) than the Twin Labs brand I’ve used. The use of pancreatin in this cleanse is not to aid in the digestion of food but rather to aid in digesting the mucoid plaque. For this reason it is suggested to take the pancreatin an hour before eating or two hours after instead of with food. You may cut the dosage in half or slowly build up to the amount of capsules the recipe recommends. Remember to listen to your body and adjust the recipe accordingly.
These guidelines are somewhat general and may be tweaked to your individual discretion.
The same applies to the apple cider vinegar and the papain.
Best wishes.
Wolfe
Nov 11, 2010 @ 11:01:04
Does anyone have a good lotion to apply for the dried out skin? Not something to stop the itching/burning but rather an effective moisturizer.
Nov 11, 2010 @ 15:59:29
Hi Debbie,
I have used Coconut oil as a moisturizer before. I love it. Not only is it a great carrier for essential oils, it is great straight and it really penetrates the skin like no other oil. It dries relatively quickly and is non-greasy unlike other oils. It is so incredible for skin care and for hair care too. It has anti-fungal and anti-bacterial properties. The list goes on and on. See http://www.organicfacts.net/organic-oils/organic-coconut-oil/health-benefits-of-coconut-oil.html for more info.
Wolfe
Nov 24, 2010 @ 21:19:15
the problem now is that morgellons is not considered a medical problem but a mental one, a new definition, name, should be developed so the medical community can get involved without admitting they were wrong in their initial assessment of this disease..there are too many cases and no treatment available for the suffering public.. the cdc must get involved to make this quest legitimate, these sites are a great support for the afflicted but are not making doctors sit up and get involved…
any doctors out there who believe should be listed on these sites so a community of professionals can be formed and thus put some real juice behind the movement…
Nov 24, 2010 @ 21:35:20
I have had the usual fare of poor responses that many of us have had when presenting symptoms to doctors. I agree, I am not set on Morgellons as the definitive name of this condition. It seems to bring a prejudiced response to initial examinations and seems to cause that particular misdiagnosis to be labeled upon us. There is, however, a statement from doctors Randy Wymore and Rhonda Casey that I wish I had known about before my failed attempts to get medical assistance. This statement serves as an introduction to physicians about Morgellons and pleads for an open mind and honest effort at diagnosis. Will this statement help others with initial examinations? I believe it will moreso than an honest, sincere appeal from us for help. I would be curious to hear any feedback from anyone attempting to use this pdf as a way to enlighten their physician. http://www.healthsciences.okstate.edu/morgellons/Joint%20Statement_4.pdf
wolfe
Nov 24, 2010 @ 21:40:34
Dear Ed,
Here is good news for you.
The VA is starting to pass some vets through under the DX of Morgellons.
The docs who treat… have to list as treating the Whole person without prejudice
and pre composed thoughts towards Morgellons patients. We have a movement now going on and it is very positive.
Morgellons is a multi faceted syndrome which involves treating the whole body,and the physicians we see need to be willing to look at the body ‘Like’ a ‘Bio chemist’ and jump in and research for their patient.
We have a few courageous people doing that… we are blessed.
Bless you
Pamela mae
Nov 27, 2010 @ 19:41:16
Hi Wolfe,
Thank you so much for messaging me on the morgellons support site! This site is so fantastic, so I am delighted with all the different protocols and treatments I can try. I will start working off your info and see how I get on. One suggestion I have so far, is that for people from UK and Ireland, it is so difficult for us to get the US products. I actually found another very informative site like yourself http://www.morgellonsuk.org.uk/ run by Jo a fellow sufferer who has a list of products and suppliers on her site at http://www.morgellonsuk.org.uk/support_skincleansing.htm, so people from Uk and Ireland can use both your protocols with ease. She also has advice for pets at http://www.morgellonsuk.org.uk/support_pets.htm
Thanks again Wolfe,
Bye for now,
Laura 🙂
Nov 29, 2010 @ 07:04:22
hi there wolfe,
thank you so much for your message and also for your website.
when i first realised that i had morgellons i completely freaked. i knew i had something, but i thought it was just the black pepper mites. and then seeing the fibres really panicked me, especially as all i had read so far was stories of people still having this disease after several years.
now though, i have read more positive stories and started to work out a protocol for myself to start healing.
thank you so much for your website which i think is brilliant. already you have saved the enamel on my teeth… a woman came into the health food shop last week and talked to me about cloudy apple cider vinegar and i have been drinking it since, but i can see that without your information i might have wrecked my teeth.
the other thing that i appreciate about your site and your email is your positivity… that healing is possible.
i am going to start with a colon cleanse and do a few other things as well – maybe the baths you mention. i also hear very good things about colloidal silver. do you think there is any contra-indication between doing a juice fast and using colloidal silver? my body is not terribly toxic – i mean it must be to some exten otherwise i wouldn’t have manifested this illness – but i have eaten organic for 15 years and have done a few fasts in the past.
how are you doing now? are you completely healed?
warm wishes
sapphire
Nov 29, 2010 @ 13:03:02
Hi Sapphire,
Thanks for your warm message. I also think that positivity helps in so many ways with this condition. It sounds as if you have a firm grasp of some essential health promoting ideas. Like you, I had a good foundation and this condition reminded me and allowed me to return to those ideals.
I have used colloidal silver topically with great results in my eyes. I have not used it internally, though I know several who have used it this way with success. I have read that it can be mixed 50/50 with aloe vera juice, so using it with a juice fast sounds like a good idea.
I am doing really well! My once daily routines became weekly, then every other week. Now I just do maintenance treatments every so often. The dietary changes and supplements are permanant changes though. It is actually fun to explore new recipes and discover new foods that one has never been exposed to.
Yes Sapphire, I do believe in remission and recovery.
Remember to listen to your body as you develope your personal protocol.
wolfe
Dec 02, 2010 @ 23:58:44
Certainly some great advice on here. There are some very good things happening concerning this affliction. I just hope and pray everyone finds what works best for themselves and finds relief of these often painful symptoms. Of course I myself want to know what caused all this, but I think it best to just find a way to get well for now. Thanks for the good advice !
Jan 04, 2011 @ 00:42:21
Hello,
Earlier today someone had sent me this link and I am so glad. I have been browsing through and I must say it is so easy and relaxing to use.
It can be difficult trying to find out anything about this crazy illness, don’t know who to believe at times or understand what they are saying.
Been dealing with my morgellons madness for 2 years and it is progressing these last weeks, been miserable.
I have the white hairs from hell infested on/in my scalp and it looks like I won’t have any of my own hair soon if I don’t pull it together and get on a protocol, seriously, and combat these….things.
Now that I have found this website I feel at ease and positive to start over again with getting rid of this illness.
Feb 14, 2011 @ 00:08:36
Hello, and thanks for this very helpful information. I have benefited much by all this info. I think I was probably in the beginning stages of this disease when first encountering this website. I don’t have all the symptoms of the disease but the few I did have seem to be going away. I have encountered one symptom that I never heard of before on any of the info sites however and wonder if anyone else has had this peculiar symptom. About 4 months ago while driving on a 3 hour trip, I began to have pain in the back part of my leg about 4 inches below the knee. It kind of felt like a muscle contracting and was very painful. I continued to experience this until after one trip the pain continued until the next morning. I began to suspect this might be a result of Morgellons. Shortly thereafter, as I was taking one of the recommended soaks with the espsom salts I experienced a strong cramp in the same location. Ususally a soak like this will cause all discomfort to go away, so I assume the epsom salts were causing some discomfort to whatever it was that was responding like this. After I got out of the bath I contined to apply topical treatments to this area and began rubbing some grapeseed oil into this area. I felt something move downward toward my right foot and I continued to rub in the oil into my foot. After awhile of doing this, I felt some hair in my hand and brought it up to look at it. I almost fainted when I saw this hair. It was moving and gyrating and looked as if it were dancing about. This was a mass of hair maybe four or five strands of long hair twisted together and looked as if it were alive. It looked like it was my granddaughters hair (her hair is to her waist in length.) I almost fainted when I saw this. Has anyone else experienced anything like this?
Sep 28, 2012 @ 12:02:39
Yes Sue I get them all over my body. They seem to be moving under my skin but sometimes come to the surface and they are sticky. They seem to want to wrap around my body like its trying to make a cacoon out of me. I’ve been coughing them up so now i am afraid that i have them inside of me as well. My mouth all inside always has a white film later over it and it gags me all the time.
Sep 28, 2012 @ 13:35:29
Hi DLL,
Just a few thoughts from me to you. Candida Albicans is a common ailment that we all seem to share. This yeast commonly infects women AND men, both internally and externally, and in our mouths as Thrush.
from an online site….
“Thrush appears as white patches in the mouth. Usually they can be seen on the tongue, inside the cheeks, under the tongue, and in the back of the throat. In the mouth, thrush can cause pain especially after scraping the white patches off of the tongue. As it progresses down the throat and into the esophagus, it can cause a sore throat, inability to swallow, loss of appetite, nausea and chest pain. Left unchecked, esophageal candidiasis can cause severe respiratory complications.”
The article goes on to say which medications are commonly used to treat Thrush, namely Nystatin (Mycostatin) liquid and Diflucan (fluconazole). This blog is more geared towards natural remedies and preventative measures. Towards these goals one should consider changes to one’s diet, such as no sugars, fruit juices, sweet fruits etc, while increasing probiotics and starting a detox and cleanse such as the Candida Alibans Detox.
After the cleanse, continue with the dietary changes and cycle through the other detoxes/cleanses in this blog.
In addition to these ideas, consider oil pulling with an organic raw coconut oil. Oil pulling is a great way to clear oral candida. Simply take a tablespoon of coconut oil or sesame seed oil and swish around in the mouth for fifteen minutes. Then spit the oil out. This can be done as the first thing and last thing one does in a day.
There are many great resources online to further educate one’s self about these issues. Morgellons seems to be a Multi-Infection Syndrome with many fronts to deal with all at once. Dealing with Candida in the body (internal/external) and making the necessary dietary changes along with cleanses will help anyone on the road to good health.
-wolfe
Feb 26, 2011 @ 01:07:32
Hi Wolfe
Forgive me if I am reiterating the obvious, as I know I could not be the first one to realise this, I have come to discover that Morgellons is Lyme with a twist, (excuse the pun).
Maybe the type of vector (Tick or Bird Mite, etc), or how many times one is vectored (more likely to be numerous times when one is vectored by bird mites)or how long one is medically neglected, would be inviting the extra nastier version that are known as Ms.
I am also astounded at how many people have been vectored by bird mites, that never put two and two together, of every 10 people I have encountered with Lyme/Ms especially those that can not remember a tick bite, 100% were vectored by bird mites.
This is not helping the sufferers, as the ridiculous antiquated questions, from Doctors, such as, did you have a bulls eye rash, or do you remember being bitten by a tick, to those that were infected by a bird mites, causes them to be even more ostracized than most Morgies/Lymies already are, due to the neglect and ignorance surrounding this unannounced vector.
However it is documented and easy to understand. Ticks live on birds blood, bird mites live on human blood in the absence of a bird host, not to mention bird migration, and because it takes a long time for ticks to feed they could be hundreds or even thousands of miles away before the tick finally drops off.
If anyone hasn’t already found this information, just let me know if you would like me to send you the links.
I know this is being spread much more frequently and widely due to the
birds, which are everywhere, including nesting
in many peoples roof of their homes, work, churches, schools etc, without
these people that are being bitten, knowing the extent and detriment to them and their families health that this will eventuate in.
Unlike when one is vectored by a tick, the birds come to you in droves.
Warmest regards
Jodie
Mar 02, 2011 @ 14:27:55
Hello Jodie,
Thank you for your informative e-mail. Yes, there does seem to be a correlation between Morgellons Syndrome and Lyme Disease.
While I am aware of the high rate of those of us with Morgellons that also have Lyme Disease, I am not completely informed about the information you’ve hinted about in your email. Please feel free to forward the links that you have found and I will post them here. Many people with Morgellons may benefit from the Lyme’s testing and finding a competent doctor to treat this condition.
Thanks for sharing this information Jodie.
God Bless
wolfe
Mar 04, 2011 @ 22:55:02
Hi Jodie, I would really appreciate your forwarding those links you were referring to in your post on the Morgellons forum regarding lymes disease. Perhaps you could post them here for everyone to see. Thanks so much!! Sue
Apr 01, 2011 @ 23:15:47
Hi Sue
So sorry that it has taken me so long to respond, I am not sure if you or others have looked at Lyme disease symptoms, I will attach a list of many of symptoms and links that also show the symptoms and the links demonstrating how birds are spreading this. In Australia it is rife amongst the Indian Mynor/Myna birds. Many have most if not all of the symptoms of Lyme and many co-infections (Morgies) after nesting’s, in the roof of the family home, church, work, school, etc, causing bird tick and mite attacks. It is amazing at how many people I have come across with, Lyme/Morgies, who don’t remember a specific tick bite etc, but can vividly remember a bird experience, as above, just prior to getting sick with these symptoms.
Anybody who does not think they fit into the Lyme disease category after looking at most of the symptoms, I would be very interested as to why you think this.
I think I know what some might say, but I will wait for the responses before I jump to conclusions, please see many of the symptoms of Lyme disease as follows, there are also links on this, the Canadian one is very good:
Symptoms of Lyme disease
Cardinal symptoms of Lyme Disease
protracted tiredness and weakness – often extreme
Swollen glands – particularly neck
Sore throat
Jaw pain and neck pain around the throat
Chest wall pain
Shortness of breath
Cough
Muscle pain
Muscle spasms- with twitching
Muscle cramps
Eye pain, particularly with movement
Sensitivity to bright light
Hypersensitivity to loud noise
Smell and taste changes
Facial pain
Intermittent facial weakness and muscle twitching
Headache
Creaking neck +/- stiffness and pain
Slurring of the speech
Difficulty swallowing
Can’t think – I see people are calling this “brain fog”
moderate to severe tiredness weakness
Common
Fevers – more at night
Abdominal pain
Period pain
Rapid beating of the heart
Pins and needles feeling
Facial paralysis (Bell’s Palsy)
Visual difficulties
Less Common
Tinnitus, that’s ringing in the ears
Vertigo, a tumbling form of dizziness
Imbalance
Gait disturbance
Arthritis or joint pains (not muscle pain)
Please visit the following link for a wealth of information and many links concerning Lyme Disease/Morgellons
http://jpdonnelly.wordpress.com/
Mar 09, 2011 @ 18:03:35
Wow! What an absolutely wonderful and comprehensive site. I wanted to write and profusely thank you!!
Apr 01, 2011 @ 13:58:03
Hello,
I would like to share my experience with this condition. I am not 100% sure I suffer from it as I became symptomatic around the same time I was diagnosed with Pernicious Anemia. I believe I contracted a mild form of this disease from having been exposed to bed bugs in October of 2010. The reason why I believe I have it is because skin crawling is not listed as one of the symptoms of Pernicious Anemia.
My journey began in February of 2011 when the skin crawling sensation became unbearable. I also noticed long fibers on my skin (on three separate occasions. I believe they are fibers as I look for the hair root and it isnt present. I have never found them growing on me) as well as the typical white, black and transparent colored specks on my skin. Taking baths went from being an enjoyable and relaxing experience to a science project where I carefully analyzed hairs, specks that came out of me. Once tiny red specks flooded the floor of my tub after I washed my hair.
After having my house treated for bed bugs, I noticed that I was only able to sleep and feel less crawling sensations the first night after the treatment. After the second night the crawling sensations resumed. I consider February and March the peak of this condition. The reason for this was having no cleaning protocol and a very weakened immune system due to the Pernicious Anemia.
Things began to improve rapidly when I took action. The first thing to do was to get a shot of vitamin B-12 which helped immensely. My skin cleared in a matter of hours. I had a lot of acne on my face. The brain fog was gone and I had more energy than I had had in the past few months. My theory is that this disease is contracted by exposure to an insect vector and a person may only become infected if a weakened immune system is present. My boyfriend and I share a bed almost every night (we have separate living arrangements) and he does not present any symptoms of the disease. It was only when I focused to correct the problems in my immune system that I noticed extended relief. Cleaning protocols up to the point of the shot had only given me temporary relief.
I have read many cleaning and nutritional protocols but I have found what works for me after a lot of trial and error (and spending a lot of money). Heres what works for me. It may work for you too.
Cleaning the Terrain
– 2 garlic pills every morning
– 2 echinacea pills every morning
– One pill of prescribed Vitamin D every week
– One shot of Vitamin B-12 every month
– A balanced diet of meats and vegetables. I avoid fruits and sugars.
Cleaning the skin
– Shower daily. Sometimes twice a day. No baths (its not good for my sanity).
– Gold Bond Body Powder to relief itchiness and crawling sensations. It works extremely well.
– Gold Bond Dry Skin Lotion.
– Tea Tree Oil
– Tea Tree shampoo (completely got rid of my itchy scalp).
Cleaning the Environment
– I keep a spray bottle of bleach, rubbing alcohol and a mix of Dr. Bonners Peppermint Soap and water handy.
– Spray my room daily with all three chemicals.
– I sweep daily.
– I take out all lint in my sheets with a lint roller. It works!
Laundry
– Tide and a big squirt of Dr. Bonners Peppermint soap. Wash in hottest washing setting.
– I dry my clothes with two Bounce Dryer sheets for at least 50 minutes
– I never wear the same clothes more than one day.
– I keep my laundry bagged in my room.
I have been doing this routine for about two weeks and it has been working for me. Last night however, my dryer broke and had to air dry my clothes next to my heater in my room. This will be a good test to see if the morgs will re-infest my environment and whether my body will feel the effects of the infestation as badly as it did before the B-12 shot. Also to see if they are more likely to live and reproduce in a wet environment. My reading suggests yes.
I agree with an earlier comment about the infestation leaving a fungus growing on your body. I have a fungus in one of my toenails and this is the foot where I felt most of the crawling sensations.
I would like to use this forum to ask about progression of symptoms. Do people experience a progression of symptoms that leads to finding bugs under or on the skin or do they all appear at once? For me, this condition hit me from left field attacking me on every possible front at the same time, fibers, specks, brain fog and acne developed in about a week. Have people seen an improvement when taking a B-12 supplement? Last but not least, could this be something different from Morgellons? Every time I discuss these symptoms with my doctors she suggests I take Xanax.
Everybody take care!
Apr 06, 2011 @ 19:22:13
Hi folks,
Just wanted to let you know there is a new Morgellons website up:
http://morgellonsdiseaseawareness.com
Check out the extensive photo galleries showing the Morgellons fibers as they cross-platform through our bodies in skin, urine, stool, semen, blood and environmentally in our water supply, dust and snow.
Many of the photos come from CureZone’s ‘Fungihomeworld.’ He has some of the most amazing documentation of this disease currently on the web.
I hope you will use the site as a tool to communicate with your doctors (see ‘Physicians Reference Guide’). Physicians need to ‘re-examine’ the way they are examining patients (use dermascopes) and learn to diagnose the disease—even if they do not know how to treat it.
They can access the photos to see that these fibers are a systemic problem and can’t possibly be textile in nature. MorgellonsDiseaseAwareness seeks to chip away at the long-held, misguided notion that this illness is a Delusional Parasitosis.
There is also an ‘Awareness’ Poster on the site should you feel the urge to print it out and pass it out. Again, send it to your doctors, local media and government officials.
Feel free to copy and post this information on other sites.
Thanks,
Ayla
…special thanks to Wolfe for his support and letting me post this link.
Apr 06, 2011 @ 20:30:58
Good Luck to you Ayla,
I will be sure to have the doctors I work with check your site out.
Blessings
Pamela Mae
May 02, 2011 @ 15:01:48
I don’t recognize the symptoms of Lyme disease for myself personally but can say with certainty that my Morgellons symptoms get much worse after having a kidney stone incident. I have stumbled upon a few suggestions online that Morgellon’s sufferers and kidney disease may be related. I started having pain and sickness in 2009 that eventually led to the discovery that I had kidney stones. I began to pass stones over a period of months until last march, 2010, when after passing a rather large one I was aware that I still had a large one to pass. That was 13 months ago. I have had sickness and pain on and off all of this time. This last “attack” was so bad. So much pain and sickness and the morg symptoms that had abated to almost non-existent had now become “activated” once again. Drinking lemon juice has stopped the kidney stone pain and the morg symptoms are going away again. To me, there is strong evidence that the two are related. Of course anytime the body is under stress the body is weakened and other conditions can flare up, but I believe there is a connection beyond that. Now if I end up testing positive for Lyme disease in the future that would really be a mind blower!
May 16, 2011 @ 20:25:16
Hello and thanks to everyone that has posted here. Especially the ‘alpha’ Wolfe.
May 18, 2011 @ 22:31:55
Thank you for making this site. I live in Boring Or, just east of Portland. I have had this disease for almost four years. It has turned my life upside down. I finally have a doctor who understands that what I have is real. I am a 36 year old wife and mother of two amazing kids. I had a successful 18 year career and was a marathon runner and triathlete. This disease just about stopped me dead in my tracks. I am a social person and was very involved in my community. It has felt like no one could even imagine what I have gone through. It is so comforting to have others who understand the complexity of this disease. I am sad that so many lives have been affected by this horror. I also know that we are stronger together. The worst part of this has been the isolation and despair of aloneness. I have always tried to help others before I had this disease. I am now the one who needs help. Thank you for your work. I have started Nutra silver and am doing UVB Blood therapy along with many other supplements. I will let you know when I have progress. Love to all of you suffering. Don’t give up, even in your weakest moments. I promise to never give up this fight. I hope together we can find a way to beat this!!!!!
May 24, 2011 @ 10:32:19
Clothing!
Hello, I am curious to see if anyone experiences increased crawling sensations when wearing non-organic cotton. For the past month or so I have tried different diets and have found that a complete organic diet has almost stopped all crawling for me EXCEPT for when my bare skin is in direct contact to non-organic cotton fabrics. I noticed that I did not feel any crawling when I wore polyester. I havent tried organic cotton yet but I think Im on to something.
Also, anyone have tips on how to moisturize the skin after using the Trader Joes Tea Tree body wash? I found that when the crawling is intense, using the tea tree brings me a lot of relief but it leaves my skin very dry.
One last thing, when I first got Morgellons I was very depressed about having it and often felt despair. Now my outlook has changed. I look at this as a challenge to become healthier. It is unbearable at times but when you find a link between symptoms and environmental conditions or diet, it is a huge victory!
Dont give up. Be strong. Keep trying.
May 26, 2011 @ 20:01:30
Hi, NE Morgie,
For me, organic cotton hasn’t made any difference. It seems to get infected, too, once I wear it. However, don’t give up the ship. That’s not true for everyone and may not be true for you. There are still a few cotton or cotton-acrylic blend things I can wear: old cotton jeans never seem to bother me and a certain cotton/acrylic top from Dress Barn that I can usually wear for a whole 8 hours without itching. Everything else I wear is polyester. You’re adding borax to your wash, right? That helps a lot.
I also use a tea tree body wash. I use organic cold pressed olive oil to moisurize and it feels so comforting. Recently I’ve started using it on my face as well. Coconut oil’s supposed to be really good and easily absorbed; I just personally prefer the olive oil. They’re both anti-fungal, too.
May 27, 2011 @ 06:50:28
Hi sojii, I think cross contamination is inevitable. I have even read about it oin GMO and Non GMO articles which say the same thing. I also firmly believe that other fabrics are affected. But, most if not all clothing is stiched together with cotton thread. I have bought new clothes, washed them and then they have loose threads all over. I looked at them closely and sure enough, the coba shaped motile fibers are sticking out from the thread; which I said is mostly cotton. A garment may say 100% poly or rayon, linen etc., bit they are held together with cotton thread.
Good to see “everyone” here, and I too like the ctrl + and – trick!
May 27, 2011 @ 14:35:41
Hi, posey!
I didn’t know you were here. Another bad fabric for me is rayon. Some people can wear it, but I infect it with the first wearing and unfortunately, once rayon is infected, it doesn’t seem to wash or dry clean out. I’m stickin’ to my polyester…
Sep 20, 2011 @ 16:22:02
Hello Wolfe:
Thank you for this site and this blog.
I’ll be doing much more reading than writing here; I know from experience that being new to all this, yet trying to help others at the same time, can give me just enough information to be “dangerous” LOL.
Reading through your site from beginning to end will help me and my family.
With Respect and Love…always with both,
Signy
Oct 05, 2011 @ 22:43:10
The stories here are so powerful.
My story is mundane by comparison. I have amplified all of my “morgellons”….and let’s face it….this is no Morgellons…..this is Toxic Assault Disease….plain and simple…..
anyway…I’ve amplified it by picking at odd spots on my skin….trying different treatments, examining stuff… I discovered I was being assaulted….from every direction (air, water, food and medicines) five months ago. Since that time I have made huge progress against a thousand little complaints….like “murky eye syndrome” (I made that up….but the whites of my eyes were murky lookin)…ugly skin syndrome….(something wasn’t right with the whole hyde), itchy eyes, aches and pains, inability to lose weight, varicose veins, endema (swelling of lower legs and feet) on hard days, my hands looked like they hurt from red spots….oozing spots…my sinuses were a constant bother,osteoporosis, tight lungs …..and then there were the symptoms I called the 7 Dwarfs Syndrome
1.Sneezy (allergies)
2.Sleepy (excessive fatigue)
3.Dopey (Brain fog)
4.Doc (This was the dwarf I had to aspire to become to get better)
5.Happy( I call this dwarf Mood Swing)
6.Bashful (lack of desire to socialize)
7.Grumpy (aka: brief fits of rage or inappropriate emotional responses to little things)
I sat up in bed one morning as said out loud “It’s as if I’m being poisoned.”
I sent my hair out for testing and came back toxic for 23 metals.
That began my hunt for the source of the poison. I checked the house for Radon Gas and when it came up boaderline, installed a vent to remove it. I called the water company and asked what they add to the water. Because the answers were kinda fuzzy, I started carrying water from a horizontal well coming out of bedrock next door…which I purify with MMS solution (28% SOdium Chlorite) I started examining foods……and that was real depressing! My favorite junk food treat “Mac ‘n Cheese” is practically Alzheimers in a box….as it contains so much aluminum. In conjunction with the ELF frequencies we are pounded with daily, shattering the blood/brain barrier….that aluminum travels right into the brain.
I went on the trail of limiting my exposure to microwaves….and it’s been a real war with Edison company as they have been here 5 times to install my “NEW State-of-the-Art” Smart Meter….which…according to my reseasrch can turn the electrical wiring in my home into a slow cook microwave oven. Now I’m on an opt out list…..and they are leaving me alone for the time being…..but the man said the time will come when it WILL BE ENFORCED one way or another.
More to follow….
VL
Oct 05, 2011 @ 22:59:26
At any rate….and I wonder if anyone is reading this….after 5 months of hard work and much research….I met up with my sister last week. She hadn’t seen me in 10 months. We spent a week together on Lake POwell in Az…..and she was absolutely stunned at how my appearance had changed. Mostly she was amazed at how good my skin looks.
Again and again she commented on it. I told her…..it’s a three pronged counter measure including 1) Get the metals OUT OUT OUT….cilantro chelation supported with chlorella seems the fastest. 2) KNock down pathogens as often as possible….it has to be a daily thing as long as the attack continues to food, air and water. 3) Purge as much of the crap as possible…..daily baths….and limit exposure.
Four years ago I was in Walmart and my sister turned me on to a great new moisturizer…..$5 for a big bottle…..and it was GREAT! “How can they do this for $5?” I wondered….but bought bottle after bottle and slathered it on. Then, in my “search-for-the- toxins period I read the lable. The product is called “Hemp” by Malibu Sun and permit me to share the ingredient list:
Water (Aqua), Coconut (Cocos mucifera) Oil, Glycerin, Stearic Acid, Aluminum Starch Octenyl Succinate, Hempseed (Cannibas Sativa) Oil etc, etc.
It’s that 5th ingredient…
I could practically write the advertisement:
Malibu Tan softens your skin AND your brain. Your date will love your sexy skin and appreciate your inability to realize how he’s practically raping you!
Anyway….recovering my health has been a long road….beware of what you are laying on your skin or putting in your mouth.
If anyone has actually read this….please reply and I’ll be back with my next installment:
“Finding health with a barely functional brain.”
Ask my sister….I kinda did….you kinda can too!
VL
Oct 28, 2011 @ 13:33:23
Need a full protocol. Mainly how to clean the colon. Most of my organs and intestines are not workin to well due to internal infestation. I got worms in my head , ears, sinuses, eyes, nervous system. Need to get my colon cleaned out asap. Need to get some food in me too, everything I eat causes reactions.
Oct 30, 2011 @ 00:21:19
Hello Adam,
I suggest that you read the Detox Cleansing section here to start. I am not a doctor so I would also suggest finding a Naturalpathic Practioner, a Dietician or if possible a Doctor that also practices or understands Complementary Alternative Medicine (C.A.M.). In the detox section here I have tried to emphasize the importance of clearing out the body’s detox pathways in the correct order. This helps to prevent issues of the detox causing toxins to remain in the body because the pathways to carry them from the body are overwhelmed or blocked. I have had a lot of success with the Candida Albicans Detox which is a gentle colon cleanse that also cleanses the gastrointestinal tract of damaging Candida. The cleanse is very simple and has the advantage of allowing the ingredient amounts to be adjusted to accomodate each person’s individual needs. Also check out the section called Diet and Nutrition for some great information about what to eat and what to NOT eat.
Best wishes for your health Adam.
Wolfe
Nov 23, 2011 @ 06:32:42
November 23rd 2011
I want to thank you for putting this out there, many of your treatments have helped us alot. I will never forget August 2011 that is when we found out we have Morgellons. I am still trying to make myself believe this is real. It is, and even as we are suffering, still hard to believe. I would like to know if anyone else finds that being by a computer makes them come out more, bitting more? My sister and I both have that problem. Also are you still keeping them at bay? We are cleaning house, walls, floors, bedding,ceiling, but still have so many white strings, or whatever they are all over. I cover the bed with a sheet , but at night I use a lint roller and it is covered with white strings and all sort of things, no matter what we do they are still all over. have to but sheets in dryer before getting in bed, even tho we wash them every day. I do believe they can live in cotton cloths even after washing and drying. I put on a cotton t shirt after it had been washed and dryed, all of a sudden my back was stinging really bad. I took it off put tape on it the tape was full of strings white. My back had hundreds of red pumps. that fast. We are not wareing cotton anymore. Threw away all of our 100 % cotton. Not buying it. Which is hard. What if anything are you doing about the air in the home, it is full? Is it in you opinion coming from us? Thanks again for being out there for all of us.
Nov 23, 2011 @ 13:14:29
Yes; computers, cell phones, digital tv’s if I set too close for an extended period. I got rid of my personal cell; only have one for business now, much less use. I don’t spend near as much time at the computer and turn it off when I’m not using it. If you have the white floater thingies in your house, you’ll notice there’s more of them around and on electronic gadgetry.
Nov 23, 2011 @ 14:43:51
Babs, I found after I shaved my head we did not have all those longer spindly fibers hanging from our table, chairs, lamp shades, end tables, etc. I felt horrible to find out that those things were coming from me. Also, some of the dust has let up in our home.
I went to Walmart and bought a 15x magnified mirror so I could get a closer look at my head. What I saw made me sick and i knew I was shaving it off. There were short comma shaped hairs clinging to to bottom of my hair, there were the longer spindly type ones growing from me that would twist around other hair. I think they may ave been coming from the same hair follicule as the hair they twisted themselves around. All this crap was flying off of me and clinging to things in our home.
When I shaved my head I saw mounds or hills on my head. This was biofilm. I was rcently reading about biofilm and this is exactly what it does. That is why Morgellons can be so disfiguring. I used Dermarest Psoriasis products to get this off. It has 3 % salicylate acid in it while acne med. only has 2%. That extra 1% made a big difference. You can buy it at http://www.Drugstore.com But there are a few different products so if you do get any, make sure you check the ingredients before ordering. You want to be sure you have the one with 3% salcylate acid.
Right now I am using something there is a lot of controversy over due to its’ cost. It is an enzyme formula that a Psychiatric nurse created and patented. It contains 4 enzymes: Cellulase, Hemicellulase, Glucose Oxidase, and Xylanasa. He has made different formulas since he came out with his first one. The website is http://www.bigislandskincare.com keep in mind that I am in no way advertising for this. people get mad sometimes because it is $200. a lb. When I found out about it I took the chance and yes it has taken tons of stuff off of me and brought out tons. I am just about at the place where I can grow my own hair back, Ayla who posted above has recently started using it and she is keeping a diary on her site wich is http://www.morgellonsawareness.com You just need to click on F6 at the top of her page.
When I was using the Demarest for Psoriasis products I would get sheets of biofilom off of my scvalp also. It worked well.
Even though I believe the stuff hanging around our home was from me, I still do believe it is environmental. I just started wearing cotton jeans again. I put F7 on me real good before I put them on. I found even if I bought polyester, the stitching in it for the seams was still cotton thread. If I looked closely I could see the little cobra shaped fibers sticking out from seams.
These are just my thoughts. I am only sharing info and hope you will benefit in some way from it. You have recently found out and in the beginning it is a shock that is too hard to describe. I still no longer believe in Science Fiction. At first all I wanted was to be dead. I have come a long way since first finding out but I will have a fiber phobia for the rest of my life; I am sure of that.
Hugs…..posey
Nov 24, 2011 @ 23:04:32
Hi Babs, Posey and everyone else,
Some interesting comments here. I especially appreciate the information on enzymes used in some of the new Big Island Skin Care products. I have not commented on them because this blog is limited to products and treatments I have used personally. The enzyme page in the topical treatment section includes these products. I have always felt that using these products is very effective and extremely fast in stopping the biting and stinging symptoms. I also endorse the home made fermentation of enzymes that is listed as a recipe on the same page. Products like eco-vie, kleen green and the other commercially available enzyme containing skin care products usually list several of seven different non-pathogenic types of hydrolizing enzymes, especially notable are the proteases, cellulase and chitonase. I go into more detail on the benefits of these enzymes used topically on that page. These brands are very affordable with my favorite being the Kleen Green concentrate… about $65.00 dollars for a gallon which dilutes down to 8 gallons. The home made enzymes are even more affordable. I made about 3 gallons concentrate for about $10.00 which dilutes down to about 24 gallons for use. Since this topic has come up again I thought I would post this information about enzymes.
Wolfe
https://morgellonsaid.wordpress.com/topical-treatments-2/enzymes-skin/ see this page for information and the home made enzyme recipe.
http://www.microtack.com/html/enzyme3.html
Click to access FBSB_2007_22.pdf
Where Do Enzymes Come From?
Enzymes have been isolated from every type of living organism. Many of these biological catalysts are significant only from an academic or medical standpoint, but some of the available enzyme from this vast repertoire have been utilized for agricultural and industrial purposes for years. The table below lists several of the industrially on sequential enzymes and their sources in nature. It is significant to note that animals plants and microorganisms all yield industrially important enzymes. Some enzymes of animal or plant origin have been used in agricultural applications; however, those enzymes most broadly used are of microbial origin.
Source of Enzyme
PLANT
Malted grains or tubers Amylase
Pineapple Bromelin (Protease)
Fig Tree Ficin (Protease)
Papaya Papain (Protease)
ANIMAL
Liver Catalase (Peroxide Breakdown)
Calf Stomach Rennet/Chymosin (Milk Clotting)
Hog Stomach Pepsin (Protease)
Hog Pancreas Pancreatic Enzymes (Several)
Digestive Tract Trypain (Protease)
MICROBIAL
Fungi (Molds and Yeast) amylase, beta glucanase, hemicellulase, protease, cellulase, pectinase, lipase, (many types of each), lactase
BACTERIA
Amylase, protease, isomerase, lactase (many types of each), rennet, oxidase, catalase, beta-glucanase, hemicellulase.
*While enzymes for diagnostic or medical purposes are most important for the benefit of thousands of patients yearly, their discussion is beyond the scope of this article.
One encounters many digestive or hydrolyzing enzymes in the digestive tract of human and other animals. These biological catalysts are necessary for the full utilization of foods ingested. Microorganisms, many being as small as 1/10,000th of an inch in length, are much too minute to have complicated digestive systems as animals do. Therefore, these microbes must predigest their potential foods outside of their cell boundaries so that they can absorb the very small nutrient compounds of predigested foods.
In order to predigest the potential food sources outside their cell boundaries, many microbes excrete enzymes out through their enveloping membrane with its supportive cell wall and into the surrounding environment. Since these “extra-cellular enzymes” must function in the environment outside the protection of the cell’s wall and membrane, they must be reasonably stable and have relatively high resistance to chemicals and must function over a relatively broad temperature range. To realize the effects of the enzymes they produce, microorganisms also must produce relatively large quantities of these catalysts. All of these factors contribute to the industrial significance and durability of extra-cellular microbial enzymes.
It should be noted that most of the agriculturally and industrial important enzymes, are those that catalyze the digestion or “hydrolysis” of certain large organic molecules like starch, cellulose, and protein. The enzymes actually attack these complex molecules, accelerating their digestion and yielding simpler substances. Since this process of digestion is referred to as hydrolysis, the enzymes that catalyze the process are considered to be “hydrolyzing enzymes” or “hydrolases”.
The hydrolyzing enzymes include:
(1) Amylases, which catalyze the digestion of starch into small segments of multiple sugars and into individual soluble sugars.
(2) Proteases, (or proteinase), which split up proteins into their component amino acid building blocks.
(3) Lipase, which split up animal and vegetable fats and oils into their component part: glycerol and fatty acids.
(4) Cellulase (of various types) which breaks down the complex molecule of cellulose into more digestible components of single and multiple sugars.
(5) Beta-glucanase, (or gumase) which digest one type of vegetable gum into sugars and / or dextrins.
(6) Pectinase which digests pectin and similar carbohydrates of plant origin.
(7) Chitinase, dissolves and cleaves chitin at the joints of arthropod exoskeletons (as a mechanism for molting when the insect is ready to shed it’s old exoskeleton and grow/harden the new one. Dissolves chitin in fungal cell walls. Applying a chitin dissolving enzyme to arthropods causes the exoskeleton to split apart at the seams PREMATURELY/INSTANTANEOUSLY resulting in instant death for the bug.
Nov 25, 2011 @ 14:53:36
Has anyone else read this article:
Destroying the Lyme Disease Biofilm Using An Ancient Infiltrator
http://www.twofrogscenter.com/lyme_infiltrator.html
It is an article about one in the John Hopkins magazine regarding an Ayurvedic medicine that cleared up the biofilm in cystic fibrosis. http://www.cogito.org/Articles/ArticleDetail.aspx?ContentID=15951
The ayurvedic is Terminalia chebula or Haritaki. I use to think that Ayurvedics were just bunk. However, due to research on them I can see I was wrong. I am currently taking Septilin; supports the immune system by putting out more macrophages. I am also taking Herbolax and I find that Terminalia chebula or Haritaki is a content in the ingredients. I can vouch for Herbolax working and have read the documented research on Septilin. After I read the article about cystic fibrosis biofilm I then wanted this Ayurvedic at 100% strength for myself, I ordered both powdered and capsules. Just received them to day. I got them at Amazon. I am going to start with the capsules as the bottle says but am going to review the article above more and do more research to see how much of the powder I might put in a lotion or something, just not sure yet.
Wolfe, was so glad you weren’t upset that I mentiond the enzyme formulas. I mentioned them at one place and was chewed up and spit put like a stick of gum. Like I said, I only mention things as number one; food for thought. One head is never enough. Secondly, to share with others who are suffering.
I want to apologize for typos you may find. I have real bad back pain issues and don’t always check my typing. Just found outI have scoliosis, spinal stenosis, bulging discs in numerous places, and degenerative disc disease. I am going to get in touch with a Dr in Physical Medicine to see if they can help rather than opt for surgery.
Hugs to all……
Posey
Nov 25, 2011 @ 15:10:29
Hi Posey,
Greg Lee’s site GoodBye Lyme Disease is a great resource. He has posted the same article you’ve mentioned in your last comment. The link between Lyme disease, Morgellons and the co-infections that both seem to share is uncertain but it is similar enough to investigate.
For some great info about Lymes and Biofilms, you may want to join Greg Lee’s Lyme site and sign up for the free weekly newletter. He explains biofilms and describes safe and effective herbal treatments for eliminating Lyme and biofilm. These herbs are often available online like you’ve found if you are not lucky enough to have a apothacary or alternative herb shop locally.
Here is a link to his site…
http://goodbyelyme.com/free-articles
Check out his Free Articles section and look at the other areas of this great site.
Also look for the links to Lyme in J.P.Donelly’s comments above for more information about Lyme disease.
http://jpdonnelly.wordpress.com/
She has been researching the very real presense of Lyme disease in Australia even though the health officials there are in denial about it.
Best wishes to you Posey in dealing with the pain issues you are having. I am glad you are not opting for surgery and are looking to other options.
Wolfe
Dec 02, 2011 @ 22:32:43
We will be interviewing Mark McCandlish on his theory of chems being laid to stop the spread of Lymes disease. Will keep you posted.
Are you ok if I put your blog on our front page? I’m going to go ahead and do it – let me know if I should remove it 😉
Dec 02, 2011 @ 23:12:10
Kia Ora Rose!!! (Maori for Be Well/Be Healthy)
Thank you for the link and like-wise I suggest that everyone visit your excellent site,The Con Trail. I really enjoy the sense of community there and your radio shows and interviews are so informative. They really illustrate how small and fragile our planet really is. Likewise, the information about geo-engineering and the health related consequences along with the political agendas discussed there also show how many different issues, including health, are related. Thank you for all that you do and embracing me in your circle.
Here is a link to Rose’s great site http://thecontrail.com/
Wolfe
Nov 26, 2011 @ 07:53:12
Thank you Wolfe. You are a wonderful help.
I had Lyme Disease but I believe it was after M started. I say this due to the quickly changing of my facial features, which I now know was biofilm spreading. But Lyme came after this began. I neve felt any movement untio 5-6 years after this biofilm was spreading. I knew I was not 20 years old anymore but I also knew that people don’t turn 90 overnight. When I had Lyme it was disseminated. It took the Dr. 2 weeks before he even thought of testing for it.
I have the interest in the Lyme and biofilm because I’m thinking what works for Lyme biofilm may work for M biofilm. But who knows, it may be 2 differerent strains. I have wondered that because after I was using the F5 and F6, it seemed to stop working oin my face and scalp. Well then I was given a sample of the F7 an wow what a difference. My face got all red and bumpy and biofilm coming off like crazy, as well as those white nodules and I suppose other stuff. There is so much mystery to M. Seems the only thing we know for sure are there are more unknowns than knowns, if any knowns.
I received my Terminalia chebula or Haritaki in the mail andstarted taking the yesterday. This is the Ayurvedic mentioned in the John Hopkins article. I also bought a lb. of the powder form but not sure how I am going to apply it to my skin yet. I mixed some with a lotion last night but it turned watery and gritty. Could nave been something in thelotion that didn’t mix with it. maybe I’ll out it on my face and scalp dry, I’m upo for any suggestions.
I will definitely take a look at the links you gave me cause I do have a great interest in this biofilm and removing it all. I think if the biofilm is gone then medication can get at the pathogen/s…….posey
Dec 02, 2011 @ 22:22:53
Wolfe – I wanted to thank you for the valuable input you have had in my life and the lives of so many others. Your tips on alkalising the body are excellent both here https://morgellonsaid.wordpress.com/diet-nutrition-2/alkaline-vs-acidic-ph/ and here https://morgellonsaid.wordpress.com/diet-nutrition-2/apple-cider-vinegar-drinks/
We feel very fortunate to have you in our sphere of the world and the members on our site regularly send me lovely comments about your input. Sending you a big hug from our little chemtrailed corner of the world – New Zealand.
Dec 08, 2011 @ 17:51:16
I’d like to welcome listeners to my Radio Blog:
Physicians Moral/Ethical Codes Obligations
http://www.blogtalkradio.com/btrplayer.swf Listen to internet radio with HappyAnn http://www.blogtalkradio.com/happyann on Blog Talk Radio
Dec 09, 2011 @ 03:15:15
——————————————————————————–
Not to be a skeptic, but one thought we all need to consider are ‘quacks’ who are profiteering from our ignorance for all it’s worth.
Society (meaning us) needs a paradigm shift in terms of believing that doctors manage our health, not us.
With this thinking or methodology, we are compromising our power to overcome our circumstances and resting our fate in the hands of people who forget about our issues at the end of the day.
We don’t have that kind of time to wait… for them to remember us. For them to do a continuing education class years down the road from now to inform dermatologists about the physical/mental effects and signs of Morgellon’s/NCS sufferers.
If you are still wondering ‘what is Morgellons/NCS’ — Basically, all you need to know is that your body has enough foreign matter/toxins in it that it is now seeping, oozing out of your pores. Your body doesn’t recognize this material as a natural occuring element, so therefore, it is unable to process it through normal channels of elimination (breath, pores, urination, feces). Once it travels through all of these systems and without successful elimination, it goes to the most inefficient and reliant on our own physical activity to function properly: the Lymphatic System. Therefore, these toxins end up pooling up and whereever it gets blocked, is where we have our lesions, which lead to all kinds of secondary forms of infections and conditions such as staph and parasites like Demodex Mange.
Okay, so if everyone knew that it was about the lymph system, then our solution is in treating weak lymph systems and how to incorporate whatever that might be into our daily regimen. Keep a journal about eating/sleeping/stress/and symptoms to self-discover and troubleshoot outbreaks. A doctor isn’t going to ever do that for you! Never…. doctors today are only going to push the drug that their pharmaceutical rep is pushing based on some unknown reason, not because it worked for someone. In fact, now that I think about it, I used to take my ‘better’ health for granted. I used to go to the doctor when I got seasonal colds, flus, etc. and was satisfied with their prescriptions — never recognizing that they were never invested in my true health.
Now I view doctors like, “They are getting paid to go through the motions of what their federal/state licensures require of them.”
Dec 09, 2011 @ 15:48:15
Thanks Heidi…how true…also…why is it that we are confined to the internet…I would love to start a face-to-face support system in my area because I suspect that this area is loaded with unknown sufferers. However, it is an incredible challenge as awareness is very limited and for some reason it feels like there is a vested interest in keeping things that way! Anyway, thanks again for sharing.
Dec 09, 2011 @ 17:58:52
Jack, thanks. I don’t know if it’s so much conspiracy or, rather, idiocracy. As rude as that may sound, we are all human beings doing the best we can. It helps though to recognize that sometimes ‘we’ aren’t the problem, but rather the way we begin to continue repeating ‘schemes’ of daily thought processes. For example, the way our society looks at proceeding with medical care. Americans typically believe the common sense solution to the matter is to “go to the doctor” and let him solve it, don’t ask any questions–even educated ones– don’t question anythings because he/she may be irked by our knowledge, because his/her ego is so disproportionate to reality that it would likely result in a discharge from the office. That’s mainstream thinking folks. I personally almost died a few months back from Morg/NCS. Now, do you think that I’m worried about the doctor’s ego? Huh.
What’s happening in our country with Morg/NCS, et. al. diagnosing and treatment is as mortifying as the Holocaust. Americans affected by this disease suffer from losing the basic freedoms this country is founded upon. It is a disgrace.
Dec 31, 2011 @ 07:13:37
I have not read all of the stories or replies…but am certainly in need of support as are all of us. I was fortunate to have a progressive doctor, when faced with my “evidence” in ziplocs (and my own blacklight) looked up and whispered, “Morgellons.”
I’m grateful for the tips on these pages. Very. What I’m not understanding, despite the fact that I am an environmentally ill patient, affected by everything:If Morg’s is coming from outside of us, why can I shower, or clean all fibers off of myself with distilled water, within 5 minutes, the fibers are coming out of my body again !
What has helped me is making sure to change everything I wear or come in contact with every single day and wash all daily.
We purchased a USB scope. I find it comforting to collect proof, and to have made the decision to fnd this fascnating. I cannot always deal with either words or pics, and take a little at a time. I am by no means under control, and often freak out suddenly, yelling at my body and the organism.
Much appreciation for diet and PH info. I was so pleased at first when I read that I was merely delusional. If only! I trust myself, however, my friends have learned that I know whereof I speak, and are supportive.
A main problem is that I am down to 70 lbs. It’s alarming. And worrying to physicians, friends and family.
Thank you for any tips, as well as for your stories.
Dee
Dec 31, 2011 @ 13:12:39
Dee, you are lucky that you actually found a doctor that gave you a diagnosis. That is a miracle in itself!
Diet is important—stay away from sugar/carbs which helps with symptoms of itching/biting…and if you find you cannot do this by yourself, find a naturopath to help you. Doctors have nothing to offer as far as I’m concerned.
Sometimes when we learn we have Morgellons we get so frightened that we go down to base weight. I went to down to 102lbs which was too thin for me. Try to eat healthy and increase your meals if necessary. You will eventually come back to a stabilized weight.
It’s good that you are empowering yourself and documenting the disease. I too am doing that and have posted my photos online.
Just want to give you a thumbs up. We all struggle with the disease, but many have gone into remissive states where they are at least functioning and feel like human beings again.
Wishing you well in the new year.
Ayla
Jan 02, 2012 @ 06:58:42
i just want to mention that you have to be careful in some casess when a Dr. gives you a diagnosis of Morgellons. I think it has come to acquire 2 meanings. Some (most) Drs. may mean it to suggest one has a psychotic issue and/or delusional, while others really do recognize it as a real disease.
I was seeing a Nutritionist and I asked her if she believed in M and she said yes. Then I got to wondering what she meant by she believes in it. Not to my surprise, she thinks it is a condition of the Nervous System causing the feelings on the skin. She does not think there is any pathogen invoved.
So M has come to have 2 meanings. Be sure your Dr. or whomever has the same meaning as you do.
I quit with that Nutritionist. If they don’t believe as I do, I don’t want to see them. We all know M is real and not some Nervous System Disorder.
Jan 02, 2012 @ 07:08:52
I have come to find a forum which everyone might be interested in. One of the categories is called Biofilm Busters. Here is the link for the Forum:
http://pptu.lefora.com/
If you scroll down and click on Biofilm Busters you will come across a new protocol for biofilm. It is using Lactoferrin and Xylitol. I also came to find out that there is a nasal spray with Xylitol and GSE in it called XClear. I ordered some from http://www.amazon.com as it was the cheapest there. I also have begun the L/X protocol.
There is another Dr. who has an article on it that I found yesterday and that can be found here:
http://www.drhoffman.com/page.cfm/936
I feel a big issue is that different bacteria have different ways of creating their biofilm. I read this at PubMed in an article. So even though I am using the F-7 enzyme formula and truly believe in these, I am still going to try other ways which seem prudent.
Jan 10, 2012 @ 23:27:28
w/5 years of suffering from morgellons, i absolutely amaze myself…the fact that i am surviving this awfulness this long to me is simply wild,i would like to say i’m on the mend, yet i know my brain is not functioning as it did “bm” before morgellons.i have to wonder, is the brain disfunction due to metabolites from the pathogen or the actual pathogen itself physically knawing (sp?) away at my brain…possibly both, but i’m so blessed to be here to enjoy life w/ my grandbabies.thank you “universe”for that.
Jan 13, 2012 @ 18:06:51
Doctors believeing in Morgellons VS Knowledge of?! Lest we remember, that the name ; Morgellons’ was created by a sufferer, not a scientist. I believe there is a scientific name to this; that if mentioned to Doctors or veternarians or scientists, they may be familiar with or atleast they can look up. Check out the word, or condition, CHEYLIELOSSIS. Zoonotic condition, most Veternarians are familiar with.
Feb 21, 2012 @ 20:20:53
I looked up cheyletiella after reading your post and would like you to elaborate a bit. How does it explain the fibers? All the information on cheyletiella indicates that if a human is infected by a pet, it only lasts for about 3 weeks and the human signs of it are a red bumpy rash. I don’t have a red bumpy rash. It also supposedly affects the arms, legs and back, not the scalp or face, which is where most of mine is. And there’s no mention of fibers. I’d love to consider that’s what this is. I developed noticeable symptoms 4 months after adopting a cocker spaniel from the Humane Society, during a 10 day vacation with her, cooped up in the car a lot of that time and sharing a hotel room and bed. According to what I just read, Cockers are supposed to be the most prone of all breeds to get this mite. Wouldn’t you know! She was treated over a year ago with Ivermectin because I persuaded my vet that morgellon’s was real and I believed she had it. She hasn’t had a lesion since but she still has the “dandruff”, she still itches and we can’t find anything. So yeah, I’d love this to be the answer to my symptoms as well as hers. So please explain…
Feb 06, 2012 @ 21:53:38
Hello all
About this NCS stuff that I have only recently read up on, it is great that someone is taking M’s seriously, and most of us know removing certain dangerous dental material has eased symptoms for some sufferers as these could make us more prone to disease once we have been vectored by the parasites that carry these infections.
Also, is Lyme disease from dental work? because 90%, (I am more inclined to think that it is 100% if competently tested) of M sufferers have Borrelia infections, as it is a co-infection/subset of Lyme, which is why many, do eventually get relief in the skin, but continue with or flare up at a later date with typical internal Borrelia infection symptoms, because they are not treating the core of their Borrelia infection with essential medication and supplements.
However, my husband got M’s from being bitten by arthropods off birds, probably including soft ticks that favour birds nests, which infested his skin, clothes and car and was externally active on and around him for 7 months, eventually infesting our house and me.
This is absolutely with no doubt, not maybe or perhaps, nothing to do with dental work and I did not catch his dental problems, he laid in a unfamiliar community depot bed on his first shift, an incredibly healthy, active man, was bitten by what he thought was thousands of bed bugs, (could also be called bed bugs, as research teaches me that these are usually, also, coincidently off birds).
Unfortunately he did not know at that stage about the very real high risk danger of having many Borrelia infections transmitted to him this way, because these birds are rife with the ticks, mites, lice and fleas, etc, that carry and transmit Lyme disease and co-infections to humans, so he did a 12 hours shift the next morning with these things still feeding on him, by the time he got home and stood in the shower for hours, it was too late, he had been well and truly vectored with many Borrelia and co-infections, by what we call the quaddie off birds, which makes you a sure thing for these infections, if one is put in this scenario with birds and their nestings, as opposed to a single tick bite, where you may stand a chance of not being bitten by an infected tick or one that is carrying so many co-infections.
The twist of Lyme with Ms, through my surveys and research is the bird involvement. filthy ground foraging birds, like rats are most effected and this would be why the Indian Mynor seems to be the main culprit.
He later realised the depot was harbouring an excessively unhealthy amount of birds, that were using this depot like an aviary, due to staff feeding them and the birds being allowed to take refuge in the open vehichles during the night, roosting in the depot roof, continually all over the outdoor furniture and in and out of the staff kitchen.
As time went on and we realised we were not going to get help from the medical authorities here, we searched and found other sufferers in Australia, local to us, who had these symptoms, they came to help us and guess what, without us telling them about Brett’s theory on how the crawling and biting symptoms, which were closely followed by Lyme disease symptoms, started, they told us there same symptoms were caused through Indian Mynor birds that had nested in their roof and left behind so many bird mites, that they could be seen all over their walls.
By now I realised it wasn’t a coincidence that hubby was so adamant, that it was parasites off birds that had vectored him with what has now been clinically diagnosed as Lyme disease and co-infections, including Ms, he now also has definitive positive test resutlts, through the most accurate form of testing for Lyme, PCR testing, he has also got 2 Lyme specific bands from Igenex as well as one that hadn’t been picked up yet, Rickettsia, which is a common co-infection of Lyme and coincidently is also known to be rife on birds.
These amazing coincidences led me to survey people who have Borrelia and co-infections symptoms, including Ms, as well as random people I come into contact with day to day, who have been diagnosed with medical conditions, often caused by Borrelia infections, that would only be correctly diagnosed by LLMD’s.
This also led me to research the link with birds and Borrelia infections, including Ms, as no one seemed to be linking, what was to us, the obvious, that birds are the carriers and disseminators of the ticks and arthropods that transmit all of these infections to humans.
It doesn’t take much research to discover that it is known fact and very logical that migrating birds are responsible for the dissemination of Borrelia and co-infections around the world, they are why Lyme disease and co-infections are the fastest spreading world wide disease, I haven’t seen many deer fly overhead of late, have you? anyway, they carry at least 60 known diseases, that many, once again, coincidently tend to go hand in hand for many Lyme disease sufferers.
It has now been 2 years since I began this survey and there is not one sufferer, other than those who do remember a specific tick bite, that I have conferred with, who do not eventually recall that the onset of their symptoms began after an unpleasant experience with birds, usually a nesting in close proximity and 98% of the time it has been Indian Mynor birds. These people just never linked this event to the onset of symptoms that followed, often around 1-2 weeks after the infestation began.
My concern about comments such as on the NCS information links, is that it has been hard enough to get people to acknoledge the link between their Borrelia and co-infections with their bird experiences, as the main causative agent, but now many are. I now have many sufferers communicating with each other, acknoledging that they have been infected this way, because they realise this link is very real and they want to talk to other people who have been infected this through birds, this is very important, in order to get the facts out ,about this wide spread and abundant carrier, people are often discouraged from persuing this link, for reasons I won’t go into here, which is why the connection has taken so long to be established, it will be common knowledge one day, but in the mean time, we can not keep wasting valueable time and education on denying the most logical, efficient and wide spread carriers,of these infections, the birds.
God bless and please keep abreast of this, people can avoid or at least delay this disease in many cases by making their home and work environments bird unfriendly, I wish someone had bothered to tell us about this very real carrier and cause for these infections, obviously hubby would have got out of that filthy bed and came straight home, washed profusely and told them to stick their filthy job and third world amenities in there behinds and he would not have ended up with such a large dose and array of infections that has cost him his quality of life and health.
J
I will update my blog soon with updated Scientific, Entomologic and Medical facts and attach it to my next post.
Feb 21, 2012 @ 10:20:23
My fam has been dealing with this nightmare for 5 months. We have had great success with Kleen green. We bathe and wash
our clothes in it. My husband puts It in an industrial sprayer and sprays our home from floor to ceiling, furniture, pictures, everything and we’ve had much success with it. Also a local Indian woman gave me peppermint extract with chlorophyll. It was amazing. We put two full droppers full in a bath and could feel them coming out of our skin. Later when I went back for more she was out and gave me peppermint oil and it didn’t work the same. Now I am convinced it was the chlorophyll. I bought chlorophyll extract at whole foods and it worked. If you look up chlorophyll it comes from alfalfa. So we are now taking alfalfa pills also. You can also dissolve the pills in your bath. I do this when I have time to soak for awhile. I have no lesions anymore. I just can’t seem to keep them out of my hair. I just started the alfalfa and chlorophyll pills tho. These things are horrific. My heart goes out to everyone. God bless you all. Julie
Feb 21, 2012 @ 17:09:21
Hey, Julie. Thanks so much for the info on cleaning. I’m just now starting to feel good enough to tackle that enormous job. I’ve had this for eight long years. For certain, it is only my belief in Jesus Christ that has taken me this far.
I have found a true home on Morgellons Support Network. The ppl. there are ALL so kind, SO SMART – so generous in taking the time to help anyone with problems. Since I have NO social life at all, It’s been a God-send to find that site and finally at least have a “cyber social life”. :))
My name is Pattie and my email is pattieinthesun@gmail.com. Feel free to contact me if you ever need someone to talk with. I’m always near my computer, could use all the friends I can get.
God bless, and may you and your family find health and healing quickly. ❤ Pattie
Feb 22, 2012 @ 12:38:42
Hi Sojii…..I read your post and wanted to let you know my sister’s dog had similar problems of itching and his hair was falling out….and his skin looked bad. I bathed him in a product called “Kleen Green”…and the change was immediate and long lasting. I even poured it in his ears. I covered him in the suds on the shores of Lake Powell and he’s a water dog (yellow lab)…he didn’t even want to get into the water and wash it off. He just sat down with a huge look of relief! A doggie smile. His fur stopped falling out…he stopped scratching and got a good night’s sleep for the first time in a long time. It’s an enzyme cleaner and works well on humans, bedding, carpets, etc. If you wish to know more, you can email me at vinyllady@aol.com. I also treated him with 4 drops daily of activated 28% sodium chlorite solution, 4,000 mg chlorella and his latest medicine ….the ayurvedic herb, Haritaki. I was sitting and putting the haritaki powder into caps when he came and sat down and POINTED at the haritaki. I tried a cap on him and he wanted more. To make a long story short….a 9 year old dog once again WEARS me out wanting to chase the ball more than I can throw it!!! LOL. He….seriously….has cut his age in half. He no longer takes arthritis medicine or limps. He literally jumps up and down for his breakfast and dinner. His face and body reflect an animal that is happy to be alive. My sister is amazed.
I didn’t mean to babble on
VL
Feb 22, 2012 @ 13:00:01
It is a sad thing when our devoted pets suffer alongside of us. Kleen Green or one of the other cost effective enzyme products seem to provide that relief and curtail many of the symptoms. I can only imagine the horrorshow that is the pet food industry. Processed pet food has already been shown to be a very poor health choice for our furry children. Many of the nutritional considerations that we hold for ourselves should apply to our pets too. Search the internet for wholesome homemade pet food recipes. Consider a water filter for both yourself and your pets. Diatomaceous earth is a GREAT pesticide when brushed into fur or sprinkled to bedding. It can also be used as a dewormer when put into wet foods (be certain to use only the food grade D.E.)
For a great and comprehensive page of ideas to treat our pets and ourselves, please see Jo Simmons’ excellent site Morgellons UK
for info on pet care… http://www.morgellonsuk.org.uk/support_pets.htm
for the index of the site… http://www.morgellonsuk.org.uk/
Thank you Jo for your tireless research and compassion.
Wolfe
Feb 22, 2012 @ 19:21:20
Hey, Wolfe! Thanks to you and Catherine for ideas. I’ll look into Kleen Green again and diatomaceous earth. I’m reluctant to try anything odd with her because she has a massive seizure disorder that can be triggered by many chemicals, natural or not. She’s on a home cooked fresh balanced diet so it’s not the food. Whatever it is, I’m pretty sure she had it when I adopted her. I have a sample size of Bug Arrest which I was thinking of taking to her groomer this weekend; has anyone used it on a pet? I need to get her to the vet and see if there’s a test for cheyletiella. Who knows, maybe it’s at least a partial answer for me, too. I’d like to hear from Kayty for an elaboration on why she thinks it explains morgellon’s.
Warning about Kleen Green and eyes…
I’ve been reading up on Kleen Green and would be remiss if I didn’t post this warning for anyone who might think of using it to wash your face or hair, or your dog. Don’t let it get in the eyes!
Sojii
(Thanks for the heads up Sojii. KG or any other enzyme cleaners SHOULD NOT BE USED in eyes, nasal passages or ANY mucous membranes. However, I have used it CAREFULLY on my face (spot treatments) and in my hair. Sojii is absolutely right about avoiding getting it in eyes. Be certain to check the literature that comes with ANY product on recommended uses and warnings. I have had some relief with colloidal silver in these delicate areas. Wolfe)
Mar 18, 2012 @ 12:32:47
Kleen free and Kleen green are two different products. Kleen Green is completely safe. I read about Kleen free and realized this product could be dangerous. I have been bathing in Kleen green for months and it is safe for kids as well. Just be careful and purchase the right one. I bathe my cat as well and he loves how he feels after. It really was the answer along with alfalfa and chlorophyll for us. Good luck and god bless!
Feb 28, 2012 @ 20:39:13
This is for Wolfe and anyone else who might remember: I seem to recall people saying not to use flea bombs in a morgie house, that it knocks the morgs back temporarily but then they come back even worse. Is that true or false? I have a wonderful groomer; she knows what I think my dog has. She has me bring her in on Sunday so she can groom her alone and then cleans everything my dog has touched with bleach or lysol. Maybe I should suggest an enzyme cleaner instead?
At any rate, she thinks we should dip her while I bomb the house. Good idea or bad one?
Feb 28, 2012 @ 23:36:55
I too would be interested in this info – thanks
Mar 18, 2012 @ 13:43:35
We also have been thru hell with our cat. I kept having well meaning family and friend telling me to get rid of him as they thought he was the problem. In my eyes he was just much a victim as we are. I think it is hard to help your animals heal completely until you have your environment cleaned up. We tried all the horrible dips and almost killed him when he ingested it thru is nose. We now just bathe him in Kleen green and routinely use advantix multi which has been approved in England for scabies in animals. It’s not listed on the box in the u.s. tho. We also had him treated got internal parasites at the vets and boarded him for a month while I aggressively cleaned my floors and walls in his living area. He seems fine now with no signs of it anymore. I do put drops of purify in his food and chloraphyll in his water just to keep him internally clean. It takes alot of work but it can be achieved over time . Good luck and God bless Julie
Feb 28, 2012 @ 23:24:39
In my opinion, we are too heavily toxified to put even another speck of crap into our environment…especially when there are more powerful, nontoxic alternatives. Bathe your dog and your home in Kleen Green enzyme cleaner….or any other good one you can find. It kills bugs….tho they cannot say that by FDA law….A wasp was bothering me last summer while I sat sipping champagne with my sis. I had the bottle of Kleen Green in my hand as I’d been putting it on the dog’s tummy….and I sprayed it in the direction of the wasp. He took off and turned up dead on the cement a time later. It’s the best for bugs.
Just a thot….but I’ll never use toxic poisons again. Morgies seem to thrive on stuff that is toxic to us like heavy metals. But I have not real evidence to prove this.
VL
Feb 28, 2012 @ 23:39:29
Catherine, I need it for bees, then. I’m a bee magnet. If there’s one within a mile, he’ll come and hover around my left shoulder. I’m also highly allergic to them, as in keel over and swell up. Since there’s an epinephrin shortage, maybe I should be carrying a little bottle of KG with me…:)
Feb 29, 2012 @ 00:45:38
I don’t see any reason that they would come back stronger except that they become more immune to the bomb poisons. I had fleas and collembola imbeded in my scalp by the possible thousands. I rid my house of them by a method most people would not do. Insects hate salt and I knew that form science in 4th grade. I salted my home, about three boxes worth 1200 sq. ft. mobile home. I sprinkled salt on all my carpet like one would carpet powder and also my furtinure and even my beds and put plastic sheets ove the matress, kitchen tile floor i poured a box of salt into a mop bucket and wet mopped it. It worked within 5 days no more seeming fleas or collembola I did my couch and recliner. They made an exit in 7ish for sure within days and as a precaution I left it there for three months before vacumning. Probably not something most people would tolerate. But it did work. I firmly believe borax will work just as well. Salt is easier to find and not costly. I threw it in handfuls under the furniture and bedding. Believe me only because its true. The bugs may be the worse part of this disease yet also the easiest the rid of.
Feb 29, 2012 @ 06:52:48
Diatomaceous earth and cleaning enzymes are two nontoxic methods of getting rid of these pests. The enzymes work so well because they affect chitin by causing a premature molting that destroys the arthropods and by causing proteins to breakdown. Diatomaceous earth mechanically kills them with its sharp edges that cuts and dessicates them through a reaction with the lipids in their exoskeletons. Both of these methods are discussed in the blog under the post linked here https://morgellonsaid.wordpress.com/environmental-cleaning/
There are certain precautions to be taken with each method. D.E. should not be inhaled and neither substance should be used in eyes or mucous membranes.
wolfe
Mar 16, 2012 @ 17:41:52
Its been about a year and a half that I have experienced morgellons. Didn’t even consider it to be such a disease at first- but after a while it became clear this is what I have. Besides dish soap, and sun laundry soap (with color safe bleach) (for washing the body affected); I use essential oils combined with baking soda, french green clay and cornstarch for a topical ointment. Diet is controlled mostly without a lot of sugar, with intent to keep the bowels open. Using a wrist band pulser that cleanses the blood through a small charge also has helped. Certainly I have noticed need to cleanse from worms. Also lyme disease with its bugs need to be removed from sores. Cleansing is important. But most important to me is to know that Christ heals the body. I am a Christian, and I stand by faith in the word of God ( I read king James bible).
Mar 19, 2012 @ 11:53:23
To Josie, yes I agree with you on the bird mites. My symptoms started after I took in a feral cat, it was a mess, I named it ‘Mangie’. not familiar at the time of something parasitic actually called ‘Mange’ ironic, eh?
Mar 19, 2012 @ 20:13:11
Hmmm – how very interesting kayty!
Apr 10, 2012 @ 19:53:31
Wow. My mother (75) has been complaining of these very symptoms for a few years driving me crazy with it. After much research, I came across this disease and a few websites regarding DE. Still much studying to be done, but for sure she feels better as her medical practitioners basically labeled her as “crazy” as did I.
Apr 18, 2012 @ 03:50:46
this site is excellent. it’s all here. wolfe, may i ask you have you made a recovery. this information is too complete and i know it works because i have done it. i kind of pieced it together from all over but here i find it in one place which leads me to believe you are doing well. for anyone reading this if you consistently apply information available you should get great results. thank you wolfe.
Apr 18, 2012 @ 12:27:53
Hello Tina,
Thanks for your kind words about the site. It really is a labor of love and I do hope that it has helped other people. I am almost three years into what i consider to be a very healthy remission. My recovery was a bit slow at first but the topical treatments here immediately calmed the skin issues. Once some of the panic and pain were under control and becoming bad memories, I was able to examine the cleanses, diet/nutrition and immune building aspects of recovery. From that point it’s been periods of getting better, reaching plateaus and then more periods of getting better.
I have almost been able to completely stop some of the external treatments and protocols and I feel I no longer need them. Some of the internal ones I have permanently adopted into my lifestyle, such as the dietary and nutritional changes, the periodic cleanses and being more active in general.
I still enjoy the detox baths but I have made them an occasional treatment, once every couple of weeks or as needed. I’ve been able to relax with the type of clothing I now wear and how often I wash my bedding and clothing.
I am not one to use the word cure when it comes to Morgellons or HyperToxicity Syndrome. I am still really unsure as to what this is or what causes it. I do know that, for me, following the cleanses and treatments in this blog have led me to a level of remission/recovery that I was not sure I would ever experience. Diet and nutrition are especially important to those of us that are less than well. These two aspects of a healthy body have been changed radically for the worse in the last few decades. Our habits need to change radically for the better.
I have not been as active with making posts here lately as I have been able to ease off of the treatments. This blog is not as thorough as I intended it to be but it does cover all the aspects of recovery that I have tried. If I feel the need to try new treatments/protocols then I will post those trials and their results here. I suggest for everyone to focus on wellness and not so much the causes and conspiracies behind Morgellons. I say this because those unknowns are seemingly endless in their possibilities and can consume so much personal energy, energy that we can use for remission/recovery.
I do believe in Good Health for all of us.
Wolfe
PS. Tina… I have had my eye on your excellent site Food for Health and Happiness and I love your ideas about eating one’s way to wellness.
Here is a link to Tina’s wonderful site…
http://foodforhealthandhappiness.wordpress.com/
Apr 18, 2012 @ 12:48:15
Wolfe, first let me say I am very happy for you if you are in remission or cured; we don’t know for sure. Is everything that you did to reach that point included in your blog and in your posts? I guess I am wondering how you reached remission and if there are certain bullets you could list. If this is asking for too much, then please just ignore my request. I won’t be offended. I realize that it may be a lot of work for you but I was selfishly thinking it would help me to put your protocols into proper perspective.
Anyway, I don’t want to appear lazy or selfish. It’s patience I am low on. I want M gone and I want it gone yesterday. It seems like everything takes forever with M and if your protocol was in a bullet type fashion it might help me to comprehend it as well. I do have issues with that and am not sure if I could keep it all straight.
It is only a thought. It never hurts to ask but I understand if it is too much also.
Thank you for your site and the oppurtunity to be a part of it,
posey
Apr 18, 2012 @ 13:29:52
Hello Posey,
I completely understand your reply here. It is a slow process and I wish I knew exactly what has given me these results. I do think that there are bullet points but I also think that each of those can be further broken down into different points themselves.
In a nutshell…
1.Topical Treatments
The enzyme treatments like Kleen Green or even better yet, the home made enzymes are very effective, along with the Detox Bath treatments.
2.Detox and Cleanses
The C.A.D. cleanse and the Mucoid Dissolving Cleanse are gentle and very effective and will jumpstart your body’s ability to absorb nutrition and release toxins. The other cleanses here can be cycled through periodically once the C.A.D. or M.D.C. is completed.
3.Environmental Cleanses
This is a very simplified and shortened list of methods I’ve used to clean up my environment. I also was able to buy a front loading washer that has a built in heater. The sanitary cycle is three hours long and reaches a temperature of 180 degrees farenheit/82.25 celsius. Janitorial enzyme cleaners are great for your house (NOT FOR SKIN) and can be found online or at supply houses. Look for cleaners with cellulase, protease, chitinase along with other enzymes as active ingredients.
4.Diet and Nutrition
This is perhaps one of the most overlooked aspect to health and may be one of the most important ones.
5.Immune System Building
This is another area that should not be ignored. I think the Rebounding Post is very important for flushing the lymph system of waste. Sleep is another overlooked area that greatly affects our health.
Each link above will lead to a series of blog posts that explore these five important aspects towards wellness.
A side note: I did feel the need to move from a house that I felt was a source of the vectors for me. IT DID NOT CURE ME. At that point, my issues were internal and once I moved I feel I brought them with me. However, a year of cleanses and dietary changes seems to have allowed my immune system to ease the symptoms and I eventually found relief in the new house. At first I followed a rigorous cleaning schedule and used D.E. and enzymes for the house, laundry and all my possessions. That tapered off and I no longer feel the need to use those (they are onhand if I do feel the need for them).
Posey, I do wish I could just post one or two treatments that would make this go away for all of us. I tried… and this blog was the result. There are over 35 posts included and many posts have several ideas from one topic in them.
I had been thinking about the Salt and Vitamin C protocol from http://www.lymephotos.com along with some information I’ve found about making your own Liposomal Vit C.
(link http://curezone.com/forums/fm.asp?i=1554530 ).
However, this blog is limited to the treatments that I have actually tried.
Sorry to be so long winded.
I do feel that starting with the topical issues and relieving the related stress and panic will allow one to move towards the other aspects of treatment but all of these five areas MUST be addressed.
Thanks for your participation here Posey.
You always bring up pertinent info.
wolfe
Apr 18, 2012 @ 15:24:03
Dear Wolfe,
I just wanted to put it out there for the record that you are a total GEM of a human being! You have helped countless suffering souls come to grips with the misery that is M – and what’s more, you’ve helped us help ourselves get better! Your site is so well put together – a true wealth of info and so easily maneuverable, even for the computer dolt like myself. I remember being very very ill – and still being able to find what I was looking for on your site. You helped me so much!
I’ve heard many ppl. singing your praises on a few M support sites,.. God Bless you, my friend!
To share some things I’ve learned over the years: I think the first big lesson, after realizing you’ve got this, is to understand that you’ve just GOT to take your health into your own hands. There IS NO DOCTOR who is going to hand you a pill and cure you! Save your money & your time. And most importantly, it won’t be easy, but try to save yourself the misery of freaking. I’ve found that is THE worst possible thing you can do! I guess one of the ‘gifts’ of M is that stress is NOT a silent killer… it’s a ‘SCREAMING OUT LOUD’ killer! For me, every single solitary symptom of M is magnified a billion times when I allow myself to get stressed out. I’ve learned to take everything, and I do mean everything, in stride! 🙂
And while it is only human nature to want to know the who, what, when, where, how and why’s of it all… I learned the hard way that concentrating on THAT and not on getting better only serves to delay the healing process indefinitely! If you only concentrate on good/healing things, then those things will come to pass. But if you just sit around with your head glued to your Toys-R-Us microscope looking at who knows WHAT? Well, I am convinced that you will never regain your health.
And you know? It’s not been pretty, but M has sure been a wake up call for me that has forced me to take a very close look at every single aspect of my life. It’s not been fun, but now I’ve done some detoxes, got on some whole food supplements, eating MUCH better, and much more aware of all sorts of stuff that I just ignored prior to this nightmare.
So, like you, I’ll never say I’m cured, but I am positive that I shall never EVER go back to those miserable first few years of being scared out of my mind. I don’t even have to do the baths anymore either! Yaay!
We CAN live with this, and we can live WELL!
Wolfe, you have a God-given gift of great intellect, and of wonderful writing skills. Thank you so much for documenting and sharing your journey with all of us. God Bless for a job well done!
Apr 18, 2012 @ 17:24:23
Hear hear Pattie – Wolfe is one of the people we have the utmost respect for. Integrity!
Apr 18, 2012 @ 17:49:55
wolfe,
thank you. i am not bothering with the “cure” word either. it’s just nice to know that this approach does work and not just for me but for others. m is so tricky i sometimes wonder if it is “tricking” me in my recovered health. i know that sounds crazy. i did not think i could get this well either.my life is now better then it ever was before morgellons. like patti said we have to take responsibility. no doctor can change your whole life for you.
i am well now but i doubt that would continue if i did not continue to eat well, walk, get sunshine and the other detoxing and supplementing strategies.
as far as my new health goes my money is on my own immune system! i have such a newfound and deep respect for the incredible human body and its’ unstoppable ability to heal itself. i am in awe.
i really love this site because i don’t have to keep remembering everything all the time. i can check in here and reading various subjects i can say “oh ya tina..time to do________”. you know just fill in the blank. not having to go over the internet with a fine tooth comb through things related to morgellons saves my time but especially my sanity.
thank you so much wolfe it’s great thing you have done here. the suffering is a disgrace. it has to end. my prayers are for us all.
May 11, 2012 @ 19:33:34
Hi all
I am new to Morgellons suffering with Lyme and coinfections. I would like to joint this forum and looking for support. I am from Canada but recently in Germany for Lyme treatment.
thank you
Jana
Jun 19, 2012 @ 14:28:59
Hi…thanks for all the good info…I am attempting to make some of my own enzymes and had a few questions…
#1 What is the “gas” that builds up…any danger in letting it out in the house? ( I am assuming not but just wanted to check)
#2 Is it okay to use fruit that is not organic…I am on a budget and actually received the fruit scraps from an “incredible eatables(sp?) store.
#3 safe to use on cats to assist with the itching?
#4 what about adding some clove to the mix?
Okay…thanks again!
Jun 19, 2012 @ 15:33:06
I’m glad to hear someone is making their own enzymes. What I’ve found about the gas that is produced during fermentation is anaerobic respiration of yeast cells produces Carbon dioxide and Ethanol. This is such a small volume that we are talking about so it is not dangerous to release it in the house. Using fruit and vegetable wastes/skins/cores etc is great and non organic is fine if that is what is available.
A side note:
Everyone should be washing their fruit and veggies (organic or not) with a good vegetable wash before eating them. A simple wash can be two spray bottles, one of 3% hydrogen peroxide and the other 5% or 9% white vinegar. Just spray the veggies/fruit with one then the other of these two items, let the wash stay on the food for at least five minutes before rinsing well and prepping or eating.
These homemade enzymes will have a slight scent to them, depending on the ingredients used. It is safe to use on our bodies and in our homes as a cleaner. Some people consume them to aid in digestion and they are safe to use on our pets too. The cats may or may not like the scent.
Spray into your hand and rub it into their coats or spray onto a brush rather than spraying them directly.
It may be a good idea to make two or more smaller batches to experiment with adding ingredients. Cloves sound like a good idea… for your cats you may consider catnip. I’ve sometimes used the organic teas from teabags (taken out of the bag) to add herbs to my mixes.
Here is a video that shows how simple it is making enzymes at home. http://www.youtube.com/watch?v=8oq1gdWMV14
-wolfe-
Jun 19, 2012 @ 21:18:33
I know you have this on your site already Wolfe so sorry if I’m over posting – Kay came in this morning and shared the link. She sends her love to you and VL
Recipe For Home-made Citrus Enzyme Cleaner – Natural, Really Cheap (Almost Free) & Effective
http://happyhomemaker88.com/2009/05/02/recipe-for-homemade-citrus-enzyme-a-natural-cheap-effective-all-purpose-cleaner/
Jun 19, 2012 @ 21:26:07
Thank you Rose,
What perfect timing as I’ve just posted a similar video here. I think Kay’s post really shows how simple making enzymes can be.
Thanks to both of you.
-wolfe
Jun 19, 2012 @ 21:33:20
She was a different person today Wolfe. She’s beating it she says and is full of energy and humour.
I’m delighted to have this info – I’ve already begun making a brew because it is expensive to ship Kleen Green out to New Zealand. VL told me I could get it in powdered form but this is something I can do during war time for next to nothing… so experimenting now.
I love you guys and your camaraderie. Grateful for all you do.
Jun 21, 2012 @ 20:56:08
I have found this site as I was trying to identify what might be wrong as I had more wounds coming and not healing seemingly resembled to Morgellons. I have not been diagnosed but I wonder if these few words may improve conditions for some. So please take these experiences as in as a suggestion, not a proved cure.
My main concern was there were more sores were coming and not healing. I don’t have any other health concerns. I had poison ivy for which I am very allergic to and I healed in 2 weeks (with Benedryl) so I suspected this was something much more agressive the immune system could not tackle. After trying alcohol cleaning several times a day, oregano oil for antibiotic content, 40% zinc ointment while the problem improved some or temporarily the cycle returned, the wounds did not go away in fact crater like wounds were open for weeks.
In final desperation I tried salt/vinegar bath and started to use 25% vinegar to wipe the infected areas 2-3 times a day. Progress was shown in a day and now I am in the scabbing stage and beginning to see “real skin”. (traditionally old world home remedies of vinegar is used for mosquito and other insect bites or infection on the skin)
Caution: 25% white vinegar is very strong, it is used in Europe and available in most grocery stores but it is diluted for salad dressing and cooking. In the US vinegar is 4-5%. I was able to obtain this from an international grocery store (if you do a search for Surig brand it is easy to locate one). When applying I used a square cotton and wiped only a portion of the body especially on the face as it produces a burning sensation and the fumes are extremely strong. On the face pat a small area, wait a few minutes to move forward, change cotton often. On the open ulcer type areas I left the cotton for several seconds.
Internally also took super Lysine double dose but reading a bit on this site I will start the apple cider addition to my diet.
All the best
Jul 02, 2012 @ 21:28:42
Thank you for this website….after searching and searching for a place where everything could be focused on feeling better rather than blaming how we got this dreaded condition, a wonderful Facebook friend sent me to you. Keep up the good work!
Jul 06, 2012 @ 11:12:33
Kelly here, [kayty]
I have just read through all of these comments, I am proud to be part of this group. We have the most caring and resourceful people. So many things ‘click, personally, and the way everybody wants to learn more and share.
IT’S SO GREAT!
Jul 16, 2012 @ 10:42:29
Dearest Wolfe,
Thank you very much for sharing all this information, it is much appreciated that you took the time to set up this website to inform & help other morgie sufferer’s as myself ~
Warmest wishes for a great day/morgie free life,
Michele Louros
Jul 18, 2012 @ 12:37:19
I have never had any skin lesions or some of the other symptoms of Morgellons. But I had a number of other symptoms to quality as a victim. Over the last year and a half since I first realized what was going on, I have eliminated many of the symptoms. Using this site has helped me very much. My skin issues had been 99 percent resolved. I have been so much better. I have been colon cleansing for over a year and felt I had eliminated most of the parasites within me.
Just recently however, I developed a very bad toothache resulting in a trip to the dentist and a round of antibiotics. I took amoxicillin for 12 days. I had the shock of my life when I began seeing parasites of all sizes and types in my stool. They started out small and got bigger and bigger up until about the 10th day of treatment when it all stopped.
I did some research on using antibiotics to kill parasites and could not find anything to show that amoxicillin had any effect on parasites. All I found was one person saying that they had s similar experience with the antibiotic.
So, I am very confused by this. Why did the amoxicillin cause this result in me. Or could it have something to do with a high dosage of Ibuprofen the dentist had me take. I never take Ibuprofen, just aspirin. Also, because of the pain I began using oil of cloves (essential oil) on the tooth and swallowed plenty of it I am sure.
So, was it the cloves, the antibiotic or the Ibuprofen or the combination of the 3 that produced this result in me. Like I said before, I thought I had eliminated most of the parasites in me, but it was a real shocker to see this. If anyone has any idea why this would have produced such a result please share your thoughts here. Thanks so much
Jul 18, 2012 @ 13:38:06
Hello Suzanne,
Catherine’s response with the links and the info about wine and diatomaceous earth is great. I am wondering about the cleanses you have used. You’ve mentioned that you have done a colon cleanse for a year or longer and had good results. In the detox process there are several systems to cleanse and in a certain order. This allows the detox pathways (colon, g.i. tract, liver, kidneys etc) to evacuate or flush from the body all the toxins/pathogens/parasites without overloading these pathways.
I have not had the same experience you’ve had but I wonder if the clove oil, amoxicillin and or ibuprofen in effect cleansed your kidneys or liver. Perhaps if you only focused on the colon and did not cleanse the other organs/systems and then used clove oil especially did cause this unexpected exodus. I do not know about ibuprofen or amoxicillin but I do know that clove oil is anti-parasitic and it is strong enough that it can be dangerous to the liver or kidneys. White clove oil is less toxic and people with liver or kidney issues may want to reconsider using clove oil at all. It is a commonly used ingredient in many antiparasitical cleanses.
This may be a good opportunity to emphasize the correct order of cleanses/detoxes to clear the body of pathogens.
Detox Cleanses and Fasts Posts
Perhaps someone with a similar experience will respond here and shed some more light on this issue.
-wolfe-
Jul 18, 2012 @ 13:25:35
Hi, Suzanne.
I work with a naturopathic doctor (N.D.)…which requires the same length of schooling as an MD. Dr. Gwen Scott. She is very knowledgable concerning these issues.
One night she had a terrible toothache and “….opened myself to the universe…”
to find a treatment. The message that came back was “Swish with organic red wine.” She thought that was odd but tried it out and her toothache deminished as she swished and spit. However, she noticed some red, gooey substance was coming out of her mouth and accumulating on her tongue. Although it was late at night, this substance alarmed her and she called her friend Clifford Carnicom. She insisted he drive over (over an hour away) to see this phenomenon. He collected some of the substance and began testing it. His results can be found on his web site. http://www.carnicominstitute.org/
To make a long story short, Gwen’s toothache vanished. She continued the swish-therapy to this day, being careful not to swish to much as to cause the roots of teeth to become unstable.
Some people swished so much they lost teeth.
I KNOW how this sounds…..but no longer have the patience to candy coat this information! All red wine from France is organic or you can get it at Trader Joe’s Market very inexpensively……like $4 a bottle. Organic is critical.
Dr. Gwen tells me to carry fresh ground clove whenever I travel. She says that clove is extremely powerful in killing digestive parasites and 2 capsules will stop “Montezuma’s Revenge” in it’s tracks if taken at the first sign of distress.
Dr. Gwen has taught me how powerful natural substances are. She would also tell you to remove parasites, take 2-4 tablespoons of diatematious earth (only the white powder “fossil flour” kind) twice a day for 10 days. Then break and allow the last cycle to mature….then do it again for a few days. I can get exact info if you need it. I’m working from memory which isn’t so good. 🙂
I hope this information helps you. You can call Gwen. She lives off the grid on an Indian Reservation in New Mexico and works with clients….whatever they can afford is what they pay. She never asks for money ….her main objective is to help others in this extremely difficult and strange time.
VL
Jul 19, 2012 @ 13:14:02
Thanks for the information and the recommendations! I have probably used every herb or any natural treatment out there. I used diametaceous earth for almost a year and got tired of the taste of it. I used 2 tablespoons a day and my stool looked free from parasites as far as the eye could see. I followed the diametacous earth with fiber and herbal cleanses. I think I must have been pretty buggy to start with. As a child I had a big sweetooth and still love bread a little too much. But at least now I have developed a love of whole grain bread instead of the old white nasty stuff!
I am wondering if my success with my current purge had something to do with eliminating the biofilm. Surely, I at least got through that layer so that the amoxicllin, or whatever else, was able to get at those nasty creatures living in me. Should it take that long to get through the biofilm?? Maybe it takes an even more intensive treatment for some of us than others.
Some of what I saw was quite large and looked like a slug or snail with a suction thingy at the end. It was probably attached to my intestines. I am even wondering, could a body with lots of parasites could possibly be what attracts the Morgellons to us in the first place. Just wondering about this….
Jul 19, 2012 @ 16:11:34
Ugh. Reminds me of the “bad ole days” 12 plus years ago when i was freaked out of my mind from what was coming out of me! I remember my beloved brother flying down here to FL from VA, simply so he could catch this miserable M – bring it home – and figure out a way to kill it. Thank GOD he never caught it! But, it happened that the very day he came to see me, I passed what looked EXACTLY like a bullfrog tadpole, but it only had one eye. Embarassing as it was, I showed him, and we were both in utter disbelief that something like that could live inside a person! (we didn’t turn it over and examine it’s mouth). I googled and actually found a picture someone else had posted of the exact same parasite. I seriously don’t even wanna know what’s living inside me. I’m just gonna keep plugging along eating better and better, getting more and more exercise as I improve – and try to forget all about this miserable disease!
Best of luck to you, my friend! ❤
Jul 21, 2012 @ 14:20:45
Thanks Pattie! I just went back through all the basic information here about cleansing. I think I have neglected the liver cleanse. I have taken some milk thistle but that alone is not enough, at least in my case. I will be doing the liver cleanse with its fasts included. I thought I had everything covered with my supplementation and other treatments but obviously not enough.
During my parasite purge as described above, I had one day of intensive “eyeball” itching. Never experienced this before in my life. I am not sure what happened, but I see that the whites of my eyes are much whiter and brighter than before. They look like the white of my grandkids eyes. I wonder what had to die in me to get that result.
I was so glad when my skin issues were resolved that I obviously did not proceed correctly with the treatment protocol. I will go back to the treatment as outlined by Wolfe and correct my mistakes.
I have not felt sick or deprived of energy through any of this. Thanks to everyone here!
Aug 28, 2012 @ 02:48:43
Hi Wolfe, Just checked out your wonderful well put together site! Love all the great info! Thank you!
Sep 28, 2012 @ 13:56:39
The stronger you can make your body by eating healthy and doing any kind of detox you can afford, the less prevalent the build-up of crap in your mouth/throat will become. Best of luck! ❤ Pattie
Dec 15, 2012 @ 21:01:22
i am so so grateful to have stumbled across your biofilm protocol….i have been fighting to help my son recover from severe vaccine damage immune desease amoung many other problems.. i think this biofilm protocol can help a lot of people trying to regain their health…God bless
Sep 13, 2013 @ 23:58:36
Hello to all and thank you Wolfe for all of the information. Am in shock, today is the day I finally realilzed, or had the guts to finally admit that I have this condition. I still am having a difficult time with the shock and denial, and sadness I am feeling. My life has changed. But we have each other and we have Wolfe. Thank you for all the life saving information. My gratitude to your willingness to share and help has no bounds right now.
Jan 01, 2014 @ 18:02:09
I have a question about the homemade enzyme cleanser. I just finished making my first batch and I can’t wait for it to be done! My intention was to use it in the laundry because I have clothes that I just can’t seem to clear. I was going to order this pool enzyme that one blogger said works great but I thought to make my own since it has so many uses. My question is, will it work in the laundry since heat will destroy the enzymes and I worry if I use cold water it won’t clear the biting fibers.
Anyone have any thoughts on this? Thanks!
Jan 01, 2014 @ 21:02:23
Thank you for all you do & my members find your site extremely helpful as do I Xlb, take care & have a great New Year
Jan 13, 2014 @ 11:21:48
Sharing what works.
http://www.lyme-morgellons.com/
Update: it appears don is charging people for his protocol.
His website may still be useful for researching the medical aspects of Lyme, Morgellons and the many co-infections. I recommend reading Dr Buhner’s work or Dr Cowden’s Support Protocol as their information is well researched, cited and free to read. 01/10/2015 wolfe
May 24, 2014 @ 20:11:51
There appears to be a connection between Lyme and Morgellons but the testing for Lyme disease is expensive and often the results can be false negative for Lyme and its co-infections.
Here is some testing information from http://www.betterhealthguy.com/lyme/testing
“ELISA (Enzyme Linked Immunoassay) – a simple, inexpensive test for detection of antibodies created as a response to an infection with Borrelia Burgdorferi (the main causative agent in Lyme disease). Personally, I do not believe this test is of any significant value and may represent a doctor that is not well-versed in diagnosing and treating Lyme disease. It may be a sign to turn and run to find a new doctor if your doctor is relying on an ELISA test to determine the course of your care.”
“Western Blot – This is likely the most commonly used test for Lyme disease. It is still an antibody test and thus false negatives are not uncommon, but it is, in my opinion, an important place to start. Western Blot test results will include both IgG and IgM assays. In many traditional infections, IgM is an indication of recent infection whereas IgG is an indicator of late infection. With Lyme Disease, there appears to be a cycling between IgM and IgG and thus, these are not accurate indicators of the length of time the infection has been present in most cases. In my opinion, IGeneX is the best place to have this test performed.”
Rather then copy/paste the extensive information that is shared on BetterHealthGuy’s great blog about Lyme testing, I recommend that you follow this link to read about the other 16 tests that he reviews, including which are most accurate and the laboratories that offer each test.
Here is that link once again. BetterHealthGuy/LymeTesting
Here is the brief description of his recommendations for Lyme Tests and Co-infections Tests.
For Lyme Disease / Borrelia Testing:
Complete Lyme Panel 6050 from IGeneX which includes Western Blots, the Lyme IFA, and PCR.
Borrelia Culture from Advanced Laboratory Services was made available in late 2011. This is the first commercially available culture for Borrelia and does not rely on the immune system for a positive test result.
CD57 from either IGeneX or LabCorp as another key indicator that may help provide more information as to whether or not Lyme disease may be a factor in one’s chronic illness. A fantastic article on the test can be found here.
For Co-Infection Testing:
Complete Co-Infection Panel 5095 from IGeneX which includes Babesia antibody and FISH testing, Ehrlichia antibody testing, and Bartonella antibody and FISH testing.
Co-Infection Profiles from Fry Labs.
Bartonella testing from Galaxy Diagnostics.
The many possible co-infections add to the challenge of receiving true results from these tests.
I know several people who are trying treatments such as the Buhner protocol or The Cowden Support Protocol.
Lyme testing is not covered by many health insurance companies so many people are faced with paying out of pocket for the expensive and often inconclusive Lyme tests. This also means many people afflicted with Lyme are completely unaware of what is affecting their health in such a horrible way.
I suggest reading as much as possible about some of the treatments that are being used for Morgellons while also beginning to research Lyme and Lyme treatment sites.
You may find some Morgellons protocols that alleviate the immediate symptoms while you begin to tackle the long term underlying issues such as Lyme and its many co-infections.
Here are a couple of interesting sites…
http://buhnerhealinglyme.com/the-protocols/
http://goodbyelyme.com/
http://www.morgellons-research.org/morgellons/morgellons-lyme-treatments.htm
http://livingwithmorgellons.wordpress.com/
http://morgellonsdiseaseawareness.com/home
Here is a link that has a great breakdown of a recent Lyme Conference with contact info for different LLMDs (Lyme Literate Medical Doctors) and the different treatment protocols that they utilize.
http://www.betterhealthguy.com/physician-s-round-table-2012
I have not used the Lyme protocols and I have written solely about the treatments, dietary changes and protocols I have personally used in this blog. The Lyme connection is a topic I have wanted to write about for a while now. I highly suggest personal research via these links to anyone who believes that Lyme may be part of their health issues.
-wolfe
Apr 01, 2014 @ 22:32:52
Hi Everyone,
Im a 31 yr old female living in Florida struggling with this disfiguring dehabilitating condition for almost 2 years.I have two children that have not shown symptoms during my stages and been detoxing this hell for a year with little to no benefit even with reverse osmosis water 2 gallons daily, perfect organic eating, organic bathing cleaners, a zillion essential oils, vitamins, clays, bronners and organic beauty products. I do drink red wine a few times a week and I do smoke organic cigs. I follow a website and a woman named Ramona from grapevinehealing. Does anyone know if sunlight truly is a factor? Has magnetics worked from anyone? Anyone had good effects with antbiotics, mms, or food grade hydrogen internally? Does anyone know a organic make up that works?
Apr 01, 2014 @ 22:39:31
I exercise, I sleep, I eat green gross smoothies of green vibrance, chorella, kelp, maca, plant based protein, l gluatamine, DE, almond milk, the whole nine yards. I own a red light infrared lamp to heal scars and lesions that I don’t know after 40 min daily after 9 month if it help a darn thing. Does anyone have knowledge on if retinA helps toplically? Dsmo? Help just wanna live laugh love life again
Apr 22, 2014 @ 12:30:54
Thank you for this forum. It gives me hope and allows me to feel that I am still part of humanity. Peace and health I wish upon all.
Fellow morgie, Laura
May 24, 2014 @ 22:46:02
I have been working with Borax which seems to be extremely powerful both topically and internally. It’s a powerful fungicide and fungus seems to be a part of the hidden agenda of these conditions. Unlike western medical approaches, this one can “do no harm” as it’s roughly half as toxic as table salt.
Battling along,
Vinyl
Jun 02, 2014 @ 18:35:12
Vinyl, how do you use Borax internally? How safe is that? I was using Borax for all laundry, but was getting expensive. I read somewhere ammonia is better for laundry and more cost effective. I have tried this and it works. Has anybody out there made the body spray(under enzymes from this site) and had trouble with spray bottle nozzles always clogging up. Please anybody have a remedy for that? Thanks Vinyl.I also am battling along and always looking for new battle tools.
Madashell@Morgellons
Jun 03, 2014 @ 23:20:43
Some of the spray bottles have a small plastic cylinder/filter that can be removed by pulling it off of the stem at the bottom of the spray tube. Shaking the mixture often will prevent the coarser ingredients from settling at the bottom of the spray bottle. Adjusting the spray nozzle towards the widest setting will also prevent the bottle from cloggging.
-w-
Jun 08, 2014 @ 13:06:20
Borax is HALF as toxic as table salt. I’m now using it on everything and taking it internally. It may have cured my osteoporosis…I have to get another bone scan to be sure. I printed out the following article and have read it 5 times. Each time I learn something new. There is a smear campaign against Borax and I’m not sure why. It seems very powerful and it DOES NO HARM. Right now I’m treating the local wild birds who are suffering terribly from a fungus.
http://www.health-science-spirit.com/borax.htm
VL
Jul 01, 2014 @ 13:41:25
This is a reply I have recently received through email. The woman who has written this has asked for me to post it without her email address or name so I am posting it anonymously. I have added a few comments in parentheses. Also, consider the Lyme information and the testing resources above posted on May 24th, 2014.
-wolfe
“I don’t know how to thank you except through this message. You have helped me immensely and I finally feel some hope. I have struggled with this for months, starting with taking body lice home from work. I have spent hour upon hour reading and trying such confusing and contradictory information…spending thousands of dollars I don’t have…trying every crazy idea possible…sometimes to the extent of putting myself and my dog in danger. Horrible. Yours is the best information I have found, and I know you will help many people, so thank you so much for sharing. I wanted to share a few things with you, and if you find them helpful and would like to use them, feel free without my identifying info.”
1) Laundry: The laundry was exhausting and expensive, so I started using a washcloth instead of a hand towel, and a hand towel instead of a large bath towel. It’s plenty and cuts down on the laundry exhaustion and expense a lot, since I change linens at least once every day. All my laundry is bagged until wash day, and I also use the small garbage bags to save on expense.
my comment:
(Consider using a box fan or a hair blowdryer once you have finished bathing or showering. DO NOT USE either of these in the tub/shower where there are electrical dangers.)
2) Drink: One of the few things I found that made an immediately noticeable and lasting difference was Bragg’s Apple Cider Vinegar Juice. The cost, however, was also too much, so I just started making my own with all organic apple juice, apple cider vinegar, lemon juice, cinnamon and cayenne. I am still tweaking the recipe, but the taste and results are almost the same as Bragg’s.
my comment:
(Be careful with the apple juice. Many people report that high sugar content in food and fruit juices provokes a strong reaction. The apple cider vinegar and all of the other ingredients listed here are alkalizing while the sugars in the apple juice are acidic and may create a small growth explosion of the pathogens involved.)
3) Environment Traps: At the very beginning of my ordeal, I originally thought I had bedbugs, even though the exterminator thought I was insane and never found anything. In my searching on the internet, I found the idea to make a bug trap using a dish that insects want to and can climb into, with oil inside that attracts them, but they also can’t get out because of the oil. There are several examples on the net. I use cheap tupperware dishes and glue a paper towel up to and around the top, so they can get up and can’t get out. It has worked with this because I have seen the evidence….ugh. This was before I knew what I was dealing with, but I am trying it again in conjunction with your advice…thus the new hope. 🙂 I have carpet that I can’t afford to remove, so only time will tell if there is an end in sight.
4) Meds: I am taking Zoloft because of this…or because of the dire effects this situation added to the PTSD, OCD and anxiety that I had previously managed well without medications. Long story short, my physician did not think I had a insect/parasite issue, but instead had a mental health issue, but I continue with the meds and didn’t tell her because why I’m taking them really doesn’t matter in the end, and to be locked up in a psych unit would not be beneficial. 🙂 I don’t know if the meds hinder or help the extermination issue, but were needed in order for me to get through another day. I have read that people have considered suicide and I can understand why.
5) Meditation: Has also been a lifesaver for me…I breathe in health, and exhale illness…breathe in peace, exhale stress…etc.
6) Pets: I look forward to when you add more info on pets. I have investigated this on my own also since I have a pet, and believe, as you said, that you have to attack all aspects at once. I have recently started her on both coconut oil in her food (they love it and it’s healthy) and bath, and vinegar/water to clean ears.
my comment:
(Many pet lovers have reported success with the suggestions from a wonderful site in the United Kingdom. The site administrator has suggestions for pets and animals, as well as great suggestions for treatments and cleaning etc.
http://www.morgellonsuk.org.uk/support_pets.htm
I also want to apologize to anyone who has written a reply that has not been published here. I am not as active on the site but I will continue to update the site with any new information that I receive.)
-wolfe
Jul 01, 2014 @ 16:57:28
Dear Wolfe,
It’s so nice to see your post. No apologies needed. I had been thinking o checking in, as the Summer is rife with fears from former years. This woman’s post was helpful.
I was sure I was in a certain remission, with very little activity. Then a trip to Dallas and hotel linens has me crawling.
In any case, my very best advice to all: sleep. Sleep as much as you can each night.
If I have a bad night’s sleep, I can assure you of the appearance of fibers inside of my ears, along with other signs and symptoms. Interesting barometer, but very reliable.
In 2011 when I was putting all of this together, this blog saved my sanity.
Thank you, Wolfe.
Very best to all, Dee Allison
Aug 04, 2014 @ 16:10:09
Hello Wolfe,
Your generous contribution to others seeking recovery is so very appreciated. And I say to you, “thank you from the bottom of my heart”! This is a new experience for me and I am learning each day. I am stubborn, strong, and determined to beat this. My 37th birthday is later this month, and I have always been in optimal health until this….
I am married, almost ten years, and have two girls, 12 and 8. As you have possibly experienced, this illness is causing a tremendous stress on my family. At first my husband thought I was delusional and now, I don’t know what he really thinks. My general practitioner is attempting to “help” me, but I am seeing a dead end ahead. He ran a complete panel of blood tests which provided no sign of any parasitic infection and also included Lymes(negative) and MTHFR(positive). Brief synopsis-mutation in the gene which processes B12 and detoxes. I do think this is significant.
I only came to the realization of my disease 5 weeks ago, but realize I was having for symptoms 3-4 years. The trigger was: I had purchased and used a home lazar hair removal. My shins became infected and wouldn’t heal. Upon strong encouragement of my mom, I went to a dermatologist my daughter had been seeing. He put me on prednisone and then doxycycline. Two weeks into, my 30 day
RX, I was full blown. I didn’t know what was wrong with me. I will not go into the details, but let’s just say through online support and info., I have reached a point that I feel like me again(almost anyway);-)
What I will say has helped me the most:
Cats claw tincture– topical and internal–this is magical!!
Neem-internal
Yeast cleanse
Triphala(colon)
Dandelion tea and milk thistle
Activated Charcoal(remove toxins during detoxes)
Ionic foot bath
Vitamin B12(as methylcobalamin NOT as cyanobalamin)
L-Glutathione
Mega coQ10
Alga DHA
Lutein
Astaxanthin
OPCs+95
Mega antioxidant
As I learn more, I will share what has helped me.
I am still struggling with my environment. 2 kids, 2 dogs, 2 cats, 4,000 sqft. to cleanse. Any help is much appreciated. My laundry is the biggest challenge. I purchased the O3 pure, and have tried borax, coconut ECO liquid, vinegar, boric acid. My last stab at it is soaking in vinegar and water but much higher concentration. I live on the gulf coast, it’s humid, and we seem to have a lot of natural mold occurring. Before all of this, I had to spray down faucets 2 a week due to mold build up.
Love and blessings,
Heather
Aug 04, 2014 @ 16:34:46
Hello Heather,
Thank you for sharing what is working for you. The testing that you’ve had is crucial to the following information. Some people have the genetic inability to process B12 while others simply lack sources of B12 in their diet (vegans and vegetarians especially). It can become a very complex issue to understand and it deserves much more of an explanation than I can write in this comment.
Tests are available to determine problems with methylation. The name of the test is Comprehensive Methylation Pathway with Methylation Pathway Analysis.
Here is a protocol that uses 5MTHF for B12 and gluthathione malabsorbtion and blocked pathways.
I usually do not promote specific brands or protocols. They may not be a “one size fits all” solution but this is information that I have passed along to someone that had similar test results. Thanks to the testing results, these protocols are often highly tailored to an individual’s specific deficiencies or genetic issues and are only recommended under a doctor’s direction.
Soluble Fiber:
Fractionated Citrus Pectin (Thorne) 1 scoop 2 to 4 times a day.
Methylcobalamin:
Methylguard (Thorne) 13 pills 1 time a day. Start at 1 pill and increase every 7 days as tolerated up to 3 pills. Go slowly because opening up blocked detoxification with this supplement could cause more fatigue, body pain, and cognitive dysfunction.
5MTHF:
5MTHF 1 mg or 5MTHF 5 mg (Thorne) 1 pill daily. Add the 1 mg dose after your are stable on Methylguard. Only add the 5mg dose if advised by your physician.
DMSA:
Captomer (Thorne) as directed by your physician.
(The importance of using any supplements only as directed by your physician can not be overstated)
http://www.thorne.com/products/neurological-support/prd~b129.jsp
I’ve tried to keep this comment short but I feel compelled to include the following information.
What are inactive and active B12, and how are they different?
There are 2 inactive B12’s :
Cyanocobalamin least recommended (most likely prescribed or used though)
Hydroxocobalamin (B12a) is thought to be converted to the active enzymic forms of B12 more easily than cyanocobalamin, and since it is little more expensive than cyanocobalamin, and has longer retention times in the body, has been used for vitamin replacement in situations where added reassurance of activity is desired.
These are made in a lab using bacteria and are commonly found in vitamin tablets, because they are cheap to produce.
These need to be converted to the active forms utilizing an enzyme produced in the body.
There are 2 active B12’s :
Methylcobalamin (MeB12) Methylcobalamin is the specific form of B12 needed for nervous system health. Because of this it should be the first form of this vitamin thought of when interested in attempting to optimize the health of the nervous system with vitamin supplementation. Indications of a potential deficiency of B12 in the nervous system might include numbness, tingling, loss of feeling sensation, burning sensations, muscle cramps, nerve pain and slowness of reflexes.
Adenosylcobalamin (adoB12) methylcobalamin and adenosylcobalamin are better absorbed and retained in higher amounts within your tissues.
These are naturally found in meat, shellfish, eggs, whole milk, poultry (chicken, turkey), and cheese.
They are also available in sub-lingual supplements. They are tremendously more active and effective than the two more usual forms used in most vitamins and therapies, cyanocobalamin and hydroxycobalamin. Not only has methylcobalamin been shown to work in neurologic diseases, it also helps with the elimination of toxic substances in the body.
Methylation is a CRITICAL function of a healthy body, but all too often we ‘use up’ the necessary raw materials because of our nearly constant exposure to environmental pollutants. Methylcobalamin is actually able to replenish the ‘methyl’ portion that is missing in methylation, while the other forms of vitamin B12 REQUIRE a methyl donor in order to be converted into a biologically active form in the blood. Therefore, people who already HAVE methylation detoxification problems, such as children with autism, can actually be made WORSE if other forms of vitamin B12 are administered!
Learn more: http://www.naturalnews.com/027045_vitamin_B12_cyanocobalamin_methylcobalamin.html#ixzz2YcTfDYY9
Some of the symptoms of B12 deficiency include:
cognitive problems
itchy skin
crawling sensations
blurry vision
lesions that do not heal
It seems that some people are not able to convert the inactive forms of B12 into the active forms that the body can use. This is because some people have a genetic problem with a certain chromosome. The chromosome does not code for an enzyme that the body needs to convert inactive B12 to the active version… in other words, the chromosome does not tell the body to make the enzyme that is needed for conversion. In this case, people will have good results taking the active versions of B12, rather than the inactive versions.
Some (but only a few) individuals will have to take active forms of B12. Some of these people will test normal for B12 levels, even when they are not. That is because standard blood tests only measure the amount of inactive B12 in the blood, and NOT the amount of active B12 (which is stored in cells). Tests are available to determine problems with methylation. The name of the test is Comprehensive Methylation Pathway with Methylation Pathway Analysis. It is also sometimes called DNA Methylation Pathway with Methylation Pathway Analysis. http://www.holisticheal.com/dna-methylation-pathway-test-kit.html
No one has any symptoms associated with B12 levels unless they are at either end of the sufficiency/deficiency spectrum. Either you have 100% of what you need stored in your body and feel fine, or you have ZERO stored in your body and are very ill. There is NO in between. In fact, as B12 levels become depleted there are NO symptoms of B12 deficiency until the body’s level reaches ZERO.
This is an excellent example of the benefits of testing and the direction of a physician or dietitian.
-wolfe
Oct 04, 2014 @ 01:56:40
Hey Wolfe!
I have morgellons but not Lyme’s disease, I have been tested 3 times in 3 years, I can’t imagine having both, the agony….
Pattie I agree 100% with your comment about stress, I was having family issues, they all live 600 miles away 3 sisters 2 brothers, I blocked them all except my mom from Facebook, email and phone for 6 months. Even in my darkest times I didn’t contact them due to their drama with each other. Then I had started on the regimen I’ve posted below and knew if I was going to succeed I had to keep any family or friends from my life that could cause me unnecessary drama or stress. Its been about 6 weeks and I’m healing slowly but surely! I’m slowly letting my family back into my life, thankfully they are understanding and welcoming me back, but if I have to start blocking any of them again, I’ll do it in a heartbeat. I too am grateful for this forum. I love all of the input and how no one is pushing their ideas or regimens, we are all different and what works for one may not work for another. Just a common goal to help each of us to beat this horrifying disease.
I was told by a reflexologist and detox doctor to use this regimen, it is a slow process but has saved my life. No dairy at all, soy or almond milk. Soy milk has estrogen added benefit for women! No white bread, potatoes, pasta etc. You get the picture. Sweet potatoes are great. No fruit juice from concentrate….ever not even orange juice. No ice cold drinks only warm or hot. You can drink a little beer but only if you put in lemon or lime in it. You may drink liquor, but only straight or with lemon or lime. You eat half a papaya every other day, wash it well, eat the rind and seeds, the fruit enzymes are like probiotics, the rind and seeds kill parasite’s. I put in the blender with a banana and really whatever other fruit you like and some vanilla soy milk to help cut the bitterness, the seeds have a pepper taste but are not hot. This makes a good smoothie. Then 3 times a day spray your whole body with a mixture of 1 cup apple cider vinegar with the mother, blow dry your skin dry on the lowest setting, never ever towel dry, when dry smooth coconut oil or balm over your body. Coconut oil is soothing and has mild antiseptic properties. 2-3 times a week soak in a bath of 1-lb sea salt and 1-lb baking soda, 30 minutes. Blow dry and coconut oil again. This is a slow but remarkable healing. Within 4 weeks I saw 50% reduction in the size of my sores and only had 2 new ones that were very small and not much to them. I was told the parasite lives in the mold in my gut and spreads to live on the oxygen in my blood. I went from sleeping 18 hours a day, sometimes 3 days straight and suicidal to sleeping most days 10 hours and have hope for a good future. I have been doing this for 6 weeks, I’m about 75% healed, and no new sores for 2 weeks. I recently added raw pumpkin seeds and L lysine and have seen really good results in the healing of my sores and scars and lesions. I have photo documented my progress and its amazing. Hopefully in another month I will be ready to get back out in public! I’m still plucking the dead ones out of my some sores but they are smaller and smaller all the time. If I help one person with this info I will be happy, this regimen saved my life and my marriage.
Thank you,
Kathryn Bell
Oct 04, 2014 @ 11:59:49
Hi Kathryn,
Thank you for your comment. It seems to be very sensible information with the exception of the soy milk suggestion. The phytoestrogens in soy causes issues for men and may even cause thyroid issues in women. Also, consider the sad fact that a very large percentage of it is produced from GMO soy. It seems that almond milk or even coconut milk (not the heavy canned coconut-milk or cream) are better alternatives. Some people can consume sheep yogurt or coconut yogurt as an alternative to dairy. This is a reminder that every BODY is different and that, ultimately, your health is your responsibility.
Keeping current on good food choices is a very important skill as is keeping on top of one’s own food allergies, sensitivities and other health “challenges”.
Kudos on your healing and recovery Kathryn!
-w-
Oct 17, 2014 @ 00:34:03
Hi Wolfe I came here from the Contrail. This is beautiful site to help people from, it is great work you are doing here.
My story is not my own, and I did not even understand it when it was happening, which must be a place for many friends and family of those with Morgellons.
Over fifteen years ago a young woman, Rachel was staying on our property, she had a skin ‘infection’ she was told it was possibly orf or scabby mouth by doctors, or that it was psychological, that the sores and lesions were self inflicted. This young woman was considered a talented and respected animal healer and had worked for prominent people. We became friends and she confided that there were black worms coming out of her sores and she had many of the symptoms that I now know of as Morgellons.
For four years, since I found out about Morgellons I have been trying to find her, to tell her “you are not crazy, there are things that can help, and most of all you are not alone.” Sometimes I have come close but she keeps moving on so I hope that writing this will somehow bring her a universal love that will share the information she deserves to know.
Oct 18, 2014 @ 10:28:39
What a beautiful person you are to be so diligent in trying to reconnect with this young woman. Morgellons is a very isolating and frightening disease. You are correct that this site is a great resource to those affected (I have it linked to my blog). I have also found great support in the FB community.
I pray that she had found her way to helpful information.
Toni
Oct 18, 2014 @ 17:21:48
Thank you for your reply Toni.
Sarah is a very compassionate person and a friend of mine.
I am sharing the link to your site for anyone that cares to read it (and they should).
http://morgellonsrecovery.wordpress.com
-w-
Mar 18, 2015 @ 23:27:44
Mr Wolfe, you are reaching people. A friend and health professional interested in the fibers falling on her recently found this site, without any direction from me. She was most impressed, although disturbed given that she knew nothing then of morgellons.
Apr 07, 2015 @ 21:47:52
Thank you for the ‘follow’ & for your very informative site Wolfe. I’ve just bought a rebounder too (having already perused that page) … was never aware of the benefits before. Looking forward to gleaning more here … being on the journey, like many I know, of restoring my immune system. : )
Aug 30, 2016 @ 15:37:55
Dear Wolfe,
I congratulate you on your website. Very happy to see more information
gets available on the Internet on Morgellons!
I am a Morgellons sufferer myself, and I am also diagnosed with late
stage Lyme disease and co-infections. I want to remain anonymous on
your website.
I am now 95% better, after a ‘treatment’ of 2 years. I rotated the
below products on a regular basis.
Antibiotics are of very little help!
What helped me the most was:
-Start with MMS for at least 6 months. At least 2, up to 8 doses a
day, gradually building up the number of drops. Herxing can be pretty
intense.
-MMS-baths: very effective (30 drops/bath or more)
-LUFENURON (chitin inhibitor) is absolutely fantastic, but to take for
3 months (1 pill a day) or on an ongoing basis. May be repeated later
on in time. Expect severe herxing.
-Alfons Ven products (FLUOX and CHIM). To take for 1,5 years on a
continuous basis. Fantastic products!
-Essential oils (internally and topically). Very careful: Clove oil,
rosemary, tea tree oil, red thyme,…
-Organic food, eating very healthy and a lot of Japanese Sencha
organic green tea
-Sauna (Infrared): 2 times a month, but more is probably better
-Kleen Green for laundry, cleaning the house and body spray, for use in the car
-Never wearing clothes for more then one day
-Changing sheets every two days, and spray Kleen Green daily on bed,
coaches, etc…
I disinfect my hands after going to the supermarket, shaking hands
with people (I make sure they don’t see this…smile)
Don’t laugh at me: I place two very large and very strong magnets
under my bed and I reacted very strongly to them. It disrupts the
Morgellons organism in a way I can’t define, but it turned out to be
helpful.
This disease has been a nearly ‘full time’ job to me, has cost me a
fortune, but after two years I now can live a pretty normal life.
I am absolutely sure Morgellons is a man-made organism, for use in the
agricultural industry. It is most likely highly contagious (and that
keeps on reproducing once it can live in favourable environments such
as humans, pets, humid houses,…).. Insect bites are a great risk for
contracting Morgellons (tick bites, flee bites, …). If one has
existing multiple (dormant) infections and a weak immune system,
mainly because of stress or poor nutrition, Morgellons can be easily
contracted. I am sure a lot of so called healthy people already have
this disease without knowing or just having mild symptoms.
I am afraid this disease is extremely difficult to cure, but I am
living proof at least a 95% cure is possible within a period of two
years. But it requires ongoing dedication, and unfortunately, also a
lot of money.
Hope this is of help,
Xx.