This post is in response to a post by mayers dated 6/16/09 entitled "Risks and Dangers of the Marshall Protocol". In my opinion anyone considering starting this protocol should read my post and his. Mayers can be found under a search of Marshall Protocol.

Dear mayers,
After reading your entry I totally agree with you. I just wish I had read it before I started on the Marshall Protocol, and then continued to stay on it for over a year and a half.

I consider it one of the worst decisions I ever made in my life. I would highly advise anyone thinking about going on this protocol to really think about it. It has made me much more disabled by worsening all of my CFS symptoms. Also now because of extreme photosensitivity, I can’t even go outside in the daylight without getting more sick, even a year and a half after quitting the protocol. I am 59 and am mostly housebound and some days bedbound.

From the start I got worse, but pressed on with hope and direction from the moderators. I did make it to phase two, but that made me even worse, so my local doctor finally convinced me to quit the MP.
I, like you, was left in much worse shape than when I started. My main symptoms are all worse; overwhelming fatigue, delayed fatigue, constant flu-like symptoms, migraine headaches, anxiety, brain fog, nausea, and now extreme photosensitivity. Or more closely-- sunlight sickness, as going outside for more than a short trip even all covered up and wearing two pairs of special sunglasses, makes me much sicker and gives me terrible eye pain and headaches.
That should have been a warning to me, because I used to love to take short walks in the sunshine, or do light yard work, or just be outside generally. Now I am a prisoner in my own home. I have to wait for sundown or rainy days to go outside. It’s dreadful. The mental effects should definitely be thought of in advance about living in darkness for so long.

I have been off of the MP for more than a year and a half now and none of my symptoms have gotten any better. I have been left in an almost totally disabled state by doing the Marshall Protocol.
Before going on the MP I was diagnosed with CFS and Sarcoidosis in my lungs, but was able to hold down a part time job and lead kind of a normal life. I would be tired at the end of the work day, but I only had to work two or three days a week and had summers off. I was able to do light gardening or housework. Now I can't do anything physical and definately cannot hold down any type of job.

I think the MP web site is so one sided that they don’t allow any negative entries. After I was no longer making regular entries into my account on the MP web site, they erased all of them that were negative, or ones that stated how many problems I was having. They left the ones that were positive or neutral.
I can’t believe that I let them use me as a guinea pig for their yet unproven treatment. When I started, I asked if there were cases where the MP just didn’t work and they never answered me.

I think that my body just could not handle the very high doses of Benicar or maybe it
was the Benicar and Minocycline. But they of course blamed my feeling terrible on the Herxing or bacteria killing and always said take more Benicar. And that I would improve as time went on. But I only got worse.

My main question at this point is: Do you…. or anyone else know what can be done to reverse the effects of the Marshall Protocol? Does anyone know what taking that much Benicar has done to my body and immune system and what can be done now to get any better? I would do anything to be able to go into the sun again, or not be so extremely sick and fatigued all of the time, or not being able to eat anything with vitamin D in it. I am taking many supplements for ME/CFS as recommended by ProHealth with some success.

I have heard of a clinic in various cities called the Fibromyalgia and Fatigue Clinic. I was thinking of going there, or possibly the Cleveland Clinic if my insurance would pay for that.
My local doctor has no clue what to do with me.

reeves 1.




[This Message was Edited on 11/06/2009]

The Fibromyalgia and Fatigue Clinics do not take insurance of any kind. They are a self-pay only and they are NOT cheap. I went to the one in Utah before they were forced out by the U of U Hospital. I am not sure they did that much good for me. They are certainly thorough in their testing and blood work ups I'll give them that.
They sell you alot of THEIR vitamins and DHEA and every other kind of supplement they can come up with. If you could hang in there long enough. I read that the WPI will be opening their institutes clinic in 2010. That's your best hope.
Nah.stacey

I don't have any advice about the clinic or how to get better...

I just wanted to thank you for sharing your story and tell you that I do hope you will improve. Your story may help many other people to steer clear of a protocol that may be potentially damaging.

I, too was on the MP and made it to Phase 2. I have never recovered from the sun sensitivity to the state I was before.
I wear rx sunglasses in the house all times I am awake.

I have no proof of this, nor am I an expert. And, sadly, I am not sure what kind of doc would help with this.

For me, I think my neurotransmitters are not functioning correctly. I stumbled across this by getting my serotonin level testes (it was below normal). I use samE to address this.

When the serotonin came back so low, the lab did a norephrine test which came back too high. That is the part that might be triggering the sunsensitivity...just a guess on my part. I again stumbled upon GABA (sold here or GNC, Vitamin World, etc.

GABA is cheap and samE is not. But after taking a bottle of the GABA, I don't seem to need the samE or at least not every day.

RichV. a CFS researcher who posts here says that samE is the major player in the mythelyation pathway. (Sorry, can't explain that one). But I do know that samE is an essential amino acid that our bodies need but cannot make.

I did come across a site (try googling neurotransmitter testing). They do a urine test of the transmitters for about $250 which includes a 15 minutes talk with a psychiatric nurse practitioner. Then I guess they want to sell you stuff. I am not sure at all that this test would be accurate. Sometimes we do get desperate to try things that won't hurt us and might help.

Very sorry your quality of life has worsened so much...very sorry.

Spacee

Geez...sorry to hear about the MP worsening you guys. I wonder if my 3 years on Valcyte did the same thing. i am still taking it (ha!) and rarely get bloodwork done.

my worsening condtion and depression make it so that i don't care!

sue

isn't the cleveland clinic one of the ones who helped discover XMRV?

Gosh, that is really sad and scary. I am so sorry this happened to you reeves. I pray that you will find some recovery eventually.

I thank you for sharing your story. The MP protocol always seemed very unnatural and dangerous to me. We were born to be out in sunlight and benefit from VitD.

Perhaps your condition will improve, but may just take a while after being ill for so long.

God bless.