Tuesday, May 15, 2007

Marshall Protocol, in English

Now, I haven't decided for sure to do the Marshall Protocol. Have to talk my doctor into it first, and I have to convince myself before I do that.

Short version is: Ph.D. clinician claims to have discovered a "bacteria-like" common cause to CFS, lupus, lyme, rheumatoid arthritis, and all related autoimmune diseases. The bacteria supposedly are very tiny (so tiny that a scientist friend of mine takes issue with calling them bacteria) and very sneaky: they live in white blood cells, where the immune system can't find them. The Marshall Protocol involves taking a drug that is supposed to allow the immune system to see the bacteria and start killing them. Also other drugs to assist in the kill-off.

Vitamin D (some of which is actually a hormone) supposedly plays a large role in helping the bacteria to hide, and people with these autoimmune diseases supposedly have a Vitamin D "imbalance" or "dysregulation" (it's a lot more complicated than that). So one of the things you have to do is avoid all ingestion of Vitamin D (no "enriched" food sources, from milk to flour) and all exposure to sunlight. As if that weren't enough, the drugs also cause photosensitivity, so I will have to wear special dorky sunglasses all the time, even indoors. (Actually, those are the new "fashion" frames, so I won't have to wear the really dorky ones. )

And it will make me a lot sicker before I feel better. The Herxheimer Effect is a major part of it, from the bacteria die-off.  Also, it can take two or three years to finish. I am still a little unclear on how long the hiding in a cave part will take, but I think that's at least six months.

But supposedly, at the end, I will be truly cured. I don't know whether to believe it or not. It would be horrible to go through that much misery and still be sick when I'm done. On the other hand I could put up with anything if I knew I was going to be cured. I've been sick for ten years and I don't really want the next forty to be like them.


Laurie said...

Sounds fascinating. Although it would be tough, if you don't try it, at the end of 3 years, you'll still have the CFS and be wondering what would have happened if you had tried it. That's sort of how I decided to go to paralegal school. :)

Laura said...

That's kinda what I'm thinking. Thanks for stopping by!

Susan in St. Paul said...

As someone who is pretty much always covered outside, and doesn't ingest dairy products I am very conscious of the long term effects of Vitamin D deficiency. I drink fortified OJ and take vitamins to limit it as much as I can.

osteomalacia- which could mimic CFS
osteoporosis- esp if you drink caffeine
Possible increased risk of cancer and possible alzheimer's

I am sure you have already explored this but some people think Vitamin d is actually the cure to CFS.
here is one blog I found on it.

I would seriously check into sleep apnea and other sleep disturbances if you haven't already.
I was at a sleep lab in Feb. I didn't have apnea but I did have some other interesting things that were severely limiting my ability to get rest and healing from sleep. Now I have a machine, and a bunch of stuff I am working on, the difference is like day and night.
I still don't sleep as much as I would like but the sleep I do get it much better, in fact I am more alert on 2 hrs now, than I often was with 8 hrs before. I am still working on some of recommendations.

Laura said...

Thanks, Susan. I have had a sleep study, nothing wrong. (I have been to many, many doctors and had many, many tests. I will post later about my experiences.)

According to the MP folks, Vitamin D can have a short-term palliative effect, but in the long term, it helps the bacteria to slip into the very cells that should be killing them.

Susan in St. Paul said...

I was asking my friend whose ex had CFS and the Marshall thing that helped, and it was an entirely different Marshall! It was the one who discovered H.pylori's role in ulcers
this one:http://www.helico.com/disease_weird.html

Frankly I feel a lot better about this guy's stuff but I can fully understand losing 10 yrs of your life and be willing to try anything. I have been there, and sometimes the most far fetched thing works and/or miracles happen.
Have you have been tested for H.pylori?

Laura said...

I'm not sure. Maybe-- I've been tested for a lot of things. I'll investigate.

Although the two Marshalls aren't related, they attended the same university in Australia, and Trevor Marshall's theories about the genomics of autoimmune disorders is as radical and as paradigm-shifting as Barry Marshall's discovery of the link between H.pylori and ulcers, and it is receiving very similar skepticism and disbelief. Barry Marshall ended up nominated for a Nobel Prize-- but it took nearly a decade for it to become accepted in the medical establishment.