Update after two years

[Charles555]

First, I'm a little sad at the shape of this forum. It seems to be over run with people posting about nutra silver and fancy heat "near cures" from a certain guru with a phd. I dont know whether the rapidly deleted posts are for members benefit or because a true morgellons sufferer posted (usually very humorously, Im looking at you Steve, about the sellers' obvious treachery).

Im partially to blame. I tried nutra silver, I bought it because of some advertisement about it working on Morgellons. I was told to start low and work my way up because the hexheimer would be extreme. I drank 1/4th a bottle to start. Nothing. Hour later I finished the rest of the bottle. Nothing. Threw the rest out with the other garbage but I guess I supported the liars didnt I?

What Ive tried (that i can remember):

- Sauna heat for long periods. Little benefit.

- Restricted diet, low iron, low carbohydrate. Moderate benefit.
Im betting whatever organism this is, that its using biofilm to protect itself from drugs (biofilm increases antibiotic/antifungal resistance by up to 1000x times). All infections except viruses I think, NEED iron. Its like a growth factor to them. Helmiths will actually eat hemoglobin. Researchers are actually using Gallium Nitrate to be "pretend iron" that kills infection/parasites after being absorbed. Cons: Gallium Nitrate is poorly absorbed orally, toxic to kidneys intravenously. I have not tried Gallium Nitrate. Sugar feeds Morgellons predictably/scarily so avoid as much as possible.

- Low dose Naltrexone. Made me feel almost completely normal for 4 days when before and now I am experiencing advanced, terrible morgellon's symptoms. Then the morgellons "adapted" or whatever it does. Now makes me feel worse when I take it.

- Zinc glucanate. Longest lasting (been taking it for years), 2nd most beneficial thing Ive tried. My symptoms are almost double (and thats pretty awful) 4-5days after not taking it. Not a cure by any means, but great support. I believe morgellons causes the body to use massive amounts of zinc for healing/enzyme use/immune system.

- Chelation therapy. Alpha lipoic acid is good in low doses occasionally, no lasting improvement-but I chelated mercury before I got sick anyhow. Intravenous EDTA is supposed to remove some iron..but idk it makes my whole body go pale after the infusion and costs 100$ a treatment. Only good oral iron chelator is the one banned here in the States.

-Marshal Protocol. Made me feel steady/good for eight months straight. Then made me feel worse. Another morgellons adaption possibly.

-Immunovir. Noticed no improvement.

-Valcyte. (use in herpes infections, chronic fatigue syndrome) Worked for a week, then, you guessed it, made me feel worse. Does have a blackbox warning (risk of death due to lowering of certain parts of blood).

- Famvir. I will never forget this drug. For 4 years, I had pretty strong sweats, when I ate wrong, got stressed out, sometimes for no reason. Sometimes I felt like I was melting. After famvir for two weeks my sweats reduced a permanent 90%. Got the idea from a lyme disease sufferer post who also had sweats.

- Transfer Factor Essentials. Slight worsening of symptoms.

- Grape Seed Extract. No noticeable change.

- Doxycycline. Worked for about 8 months (felt more stable, less biting/itching). Now it makes my symtoms worse.

- Many other drugs that I will go into detail later when I have more energy.

Btw I know some of you might be thinking: "feeling worse might be because of the hexheimer reaction". But after a hundred or so treatments I can tell improvement from side effects/morgellons adaptation.

Also, one website described biofilm like this: immune system cant kill it, and it generally doesnt kill the host, though it can being extremely destructive. Biofilm can produce substances that a single organism cannot. Biofilm can make a group up to 1000 times more resistant to antibiotics/antifungals. The most common example in humans is the film that people get on their teeth. Seemed to descrive my situation perfectly: I cant kill it, it doesnt kill me quickly, and drugs dont help much/for very long.

[belle9]

You seem to have been experimenting like me. I am trying to find a physician who knows about this stuff, so that I can stop taking chances. I have had things make me worse and some make me better. Antibiotics, if taken long enough, make me better. Antiparasitics make me very sick but the brain fog clears. Sunshine makes me better. I may have to move back to Hawaii. I do understand the frustration and the agony. Carbs make me itch so badly, I can't stand it. Maybe we can get the docs to help us with the latest research.