Hi, I wasn't sure what area to post this:
I have been dealing with facial skin infections for the past five years. I have done extensive research to try to determine the culprit. There have been so many conditions that seemed like a great possibility. Most were bacterial, some were viral, and there were fungal possibilities too. I don't have insurance to see a physician. So I purchased a 365 nm uv light, hoping that maybe I'd get some answers. Well at first I seen some orange specks and some blue, which appeared to be cotton fibers or dust. However, at closer examination I realized that some of these "cotton" fibers are attached. I plucked them as I would a hair. I thought it was odd, but didn't think too much about it. Then one day I seen a long hair sticking straight out of my face. So I plucked it and as I watched closely. OMG..It was moving!! It was clear to the naked eye, yet fluoresced blue under uv. I even seen a head. Upon more research I came to the definite conclusion that I am infested with Morgellons disease. Everything makes since. On top of persistent skin infections as well as bone and joint issues, I am severely chronically fatigued and it's been getting progressively worse. I seriously feel like I am slowly dying. I can't get out of bed with out taking amphetamines daily, but I still can think, and I still feel ran down. Any advice?? Please! I'm freaking out! How would I go about getting rid of this.
From what I read, doctors don't believe in this disease. They treat it as a psychological condition. That's why most people with this disease turn to homeopathic remedies. If I had extra money or insurance, I'd take a chance at going to the doctor. Though most people with Morgellons visit many doctors before they find help, if at all. It's only visible under UV, otherwise it just looks like normal hair. I really thought I might have folliculitis.
I'm sorry you are going through this. What comes to mind as a treatment to try is neem soap because it kills bacteria, fungus, and viruses. So I wonder if anybody has tried it for the symptoms like you are having.
Neem soap wouldn't have much disinfectant properties -- pure neem oil would be stronger. But the problem is, if the poster doesn't know what he has, he can't figure out how to deal with it whether naturally or medicinally. You have to know what you're dealing with before you can figure out how to fix it. That's why I said go to a doctor. You might have to find a really good doctor, which is hard, I know, believe me I know, and they often don't take insurance so they can be good doctors (or make a lot of money, one of the two), but without an accurate diagnosis you are just lurching around in the dark.
You are right about the way doctors treat Morgellon's.
The Infectious Disease Society of America and CDC
are making the rules.
When Doctors break protocol by treating Morgellon's for what it actually is,
they are risking their ENTIRE medical career.
CDC finds that this is not a disease at all, but a psychological condition
From the CDC website: "This comprehensive study of an unexplained apparent dermopathy demonstrated no infectious cause and no evidence of an environmental link” , endorsing the following official statement regarding Morgellon's : "No common underlying medical condition or infectious source was identified, similar to more commonly recognized conditions such as delusional infestation"
which appeared in peered reviewed journal PSOS One.
Going "underground" for proper treatment may be an option, if you have money and find a willing LLMD, who works usually under the radar in Lyme unfriendly states.
Other than this, you may go to sites like "how I cured morgellons" to see what other sufferers are doing. (beware of scams though).
You may also try the Rife forum in yahoo groups, to see what some members are recommending for morgellons.
You can also look into this information: Morgellons Treatment Protocol Completed, Dr. Susan Kolb MD, Research by Trisha Springstead RN
Paxiled may have a point, that you need to know what it is, but a diagnosis
is very unlikely, in light of the controversial ruling at the conclusion of a 3-year study by the CDC that this disease does not exist!
Personally, I'd rather take a shot in the dark, than live with something like this. We're not talking chicken pox here, this is really serious!
And finally, you may want to contact Dr. Garth Nicolson,
He is the leading expert in the world in pathogenic Mycoplasma and related infectious conditions like Bartonella, Babesia, Ehrlichia, HHV-6 and a regular contributor in MedHelp at the Autoimmune Community where I
frequent, mostly. In his research in GWS there was Morgellon's involvement
Because of his tremendous achievement internationally in diagnosis, research and treatment, the governing medical authorities have not interfered with him (yet).
I really hope you get some answers. Please keep us posted.
Hang in there and stay strong.
Thanks everyone! I might try Neem soap and pure Neem oil. I'm big on Tea Tree Oil currently. And your right Paxiled, I need to know what I'm dealing with. I've came across all sorts of possibilities, but it seems to be a mixture of fungal and bacterial. As for the exact species of organism, I'm finding conflicting information. I ordered a prescription antibiotic as well as antiparasitic, so I'll see what happens when it gets here.
Yes Ephedra, it sounds like you have Morgellons disease. The fibers are phosphorescent under a UV light. Also, you have fatigue and joint issues which are all part of the Morgellons symptomology.
I too have Morgellons disease and have a website where you can find out more information—but I can't give the link here because I'm not an "accredited authority." You may Google: 'Morgellons disease awareness' and my site will come up.
Specifically, take a look at the 'Diet and pH' link. The first thing that you should be doing is addressing diet and supporting the body with foods that nourish. There are a lot of tips on that page, and if I were you I would put all of my money into high-quality supplements and organic food as well as super foods.
You probably have read this elsewhere, but I'll stress it here nonetheless, and that is to get everything that does not support the body out of your diet. No processed foods, no GMOs, alcohol, sugar, bread… A superb video showing the importance of food in healing that is the one by Doctor Wahls who was crippled in a wheelchair with MS and brought herself back to health through a diet that supported her mitochondria. I try to follow her ideas and find that I feel great.Here's the link:
Next you should learn about balancing the body's pH so that you are alkaline. This will slow fiber growth down. I've seen it on myself and others in the community have verified it. I explain how to go about it on the site. You will need to get pH urine strips to do this.
There are many approaches that people pursue, you must do what feels right for you. Personally, I have never been a great believer in the medical profession as a healing institution although have great respect for them when it comes to crisis management. But for real healing I use only alternative treatments. There is no one pill that is going to make you better.
What we know about Morgellons is that sufferers have high levels of bacteria, yeasts and fungus and many test positive in a DNA stool test for a non-human parasite, taxonomy unknown. This does not mean a creepy crawly bug is involved, it might be a new spirochete, protozoa, mycoplasma, etc. we just don't know yet. There is also a toxic component involved of heavy metals.
So you will need to learn how to detox the body. Again, I can't post a link but can suggest googling 'Morgellonsaid'
The first site that comes up, should be the correct link (it's a WordPress site). There are some very good detox strategies on that site.
As for going to a doctor, forget it. It's a waste of your money. Going to a Lyme literate physician is often an out-of-pocket expense (and they are not cheap!). Their protocol will be to put you on antibiotics and possibly antiparasitic's which I see you are attempting to do. There are other ways that you can deal with this on your own. You might want to read Stephen Buhner's book, healing Lyme. He has very detailed information on herbal remedies that address these specific problems.
I'm not suggesting that you have Lyme disease, but many Morgellons sufferers also have Lyme disease and the treatment protocols for that often help the Morgellons.
Do not give up! Making changes should bring you some relief.
Ayla I also have Morgellons and have been to your site and it has been VERY helpful to me. You give very sound advice! I've recently started a blog too. I want to be able to direct people to the non scary sites where you can get actual help not just a heap of fear....
I'm not symptom free yet but I feel I am getting close!
Did you already cover your mattress with a vinyl cover? If not, do that. You can wipe it down with vinegar while you are washing the sheets.
I have many challenges and setbacks since I live with my family and they do not believe in Morgellons (visible long clear fibers grow on the waistbands of ALL of our underwear, not just mine). If I lived alone my home could be much different and healthier.
Tina Engressia's blog has alot of good ideas for foods and supplements to try.
Any chance you could qualify for Medicaid? I have been without insurance at times as well. It is a drag.
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