Serious Side Effects Risks of Marshall Protocol

Since Hope deleted her thread and thus useful information about side effects and risks of MP, I'm assembling here some negatives posted on the lymenet thread last year.

In addition, anybody harmed by the MP protocol feel welcome to post on this thread.

I will see if Ken Laassen can or is willing to post his comment again.

Thanks.

Marshall Protocol from Lymenet Discussion in 07

Penny

Regarding my personal experience with Benicar and the MP. I took large doses of Benicar for over 2 years. It reduced my inflammation tremendously but it did not "cure" me. I could not take minocycline because I developed a severe reaction to it as described above. I did take other antibiotics under the supervision of my doc. And I took them at FULL DOSES with no negative effects. Benicar did not "potentiate" the abx, and Benicar did NOT kill any bugs. The ABX I took killed the bugs. Sun & D avoidance did not help me, and the literature does not support the theory that it helps anyone other than Sarc patients. What Benicar DID do, after two years, was make my thigh muscles extremely weak, and my middle a lot thicker. I finally stopped taking it because I was worried about what was happening to my muscles, and how the low bp might be contributing to hypercoagulation factors in chronic infection. I now take other anti-inflammatories with my antimicrobials. I think both are vitally necessary to treat entrenched, chronic infections (hence our yahoo group, Infection And Inflammation). But I do not believe, after much research and personal experience with the MP, that it is a "cure" or that it is even scientifically supported in any meaningful way. The MP has elements that should be investigated, but that research needs to be done by someone who is objective regarding the pros and cons of the drugs involved.

Please be careful. Please do your homework. Don't take anyone's word as truth without researching it for yourself.

Note: Here was Penny’s post on her yahoo group in 2007:

"Paula,

When I was trying to do the MP, the minocycline just about killed me and all I got was "herx, herx, herx"...and..."cut down on the mino, increase the Benicar". I was already on 160mg of benicar a day, and down to almost no mino, and it didn't help at all. It was a terrible reaction. Terrible headaches, vomiting, photosensitivity. That was an extremely scary experience and it was completely ignored by the "experts" at the MP board. I had no choice but to stop the mino and when I recovered enough to research it a bit I found out that pseudotumor cerebri (aka ICH) is a clearly listed side effect of mino and is much more common than people know. To promote that as "herx" is irresponsible and dangerous in my view.

When I stopped the mino out of necessity and switched abx at my doc's bidding, I became a bad guy rogue for not doing the protocol "correctly". When I expressed concern about others who were having severe reactions (one person died, remember?), all my posts were removed ..." ---------------- KelliCa:

Amy wrote:

"There's a ton of personal grudges influencing these comments.

None of this has anything to do with new people who need to hear about the science behind the treatment and not the drama that took place several years ago. It's time to move on."

Amy, I know you're probably scared to read of any negative consequences resulting from the MP, since you're currently in the midst of trying the protocol.

But to completely negate other's legitimate experiences -- that in some cases nearly cost them their lives -- by saying that these are just 'personal grudges' is quite insulting, however unintentional.

And just because they took place several years ago doesn't make them any less relevant. I'm sure you wouldn't suggest that people just forget the Holocaust for similar reasons.

I personally know 3 people from our small support group who had to stop the MP due to severe kidney and/or hypotensive issues. One woman nearly lost her kidney function. And she was following the protocol to the "T". It took nearly 8 months to recover her kidney function.

I'm sure you feel you're doing the right thing and have obviously put a lot of work into your site. I would humbly suggest however, that you include more cautions and actually report some of these negative concerns and/or risks on your page, to protect yourself by telling the full story. Reading these 'negative' stories on this board may actually be a good thing, in the long run.

Perhaps you could ask others at the MP group if anyone has stopped taking the MP drugs. If they have, and they're still doing fantastic, then perhaps the word "cure" is appropriate for them.

But since you use the word "cure" in this thread, let me ask you directly -- can you name one person that has been cured by the MP protocol (i.e. off all drugs and still doing great)?

Best,

Kelli

Second Post by Kelli in answer to Amy:

You said...

"From the perspective of the MP, those patients you mention are not seen as treatment failures."

Tell that to their kidney specialists who had to demand that they stop treatment for fear their patients kidneys would completely shut down and fail. As in 'stop working'. Kidney failure is one step away from DEATH -- it has nothing to do with a so-call "herx".

"We see the extreme increase in symptoms that they experienced when starting the treatment as an indication that they are killing a substantial level of L-form bacteria and consequently as a direct sign that the treatment WILL work for them."

First of all, the fact that you use the word "we" says Barb is correct -- you're just parroting the dogma from the MP Club. And secondly, these weren't an "extreme increase in symptoms" -- their kidneys were fine before treatment.

Amy -- it is truly in YOUR best interest that you consider -- just consider -- reading about the potential risks involved with the MP on other sites (perhaps by doing a google search?). Even Dr. Paul Cheney has expressed reservations about the MP, and to the best of my knowledge, no other leading CFS/Lyme doctor has endorsed it. Correct me if I'm wrong.

You won't find the real horror stories on the MP site. They were "lost" during a revamp of the site about 2-3 years ago, and like others have said, if one asks too many questions, or especially questions the protocol itself, Marshall rudely cuts them off and/or they are banned. So much for free speech.

Secondly, try to put yourself in these patient's positions. The ones I've read about and/or heard about directly, tried and tried and tried to stay on the protocol, telling their doctors and specialists what you have repeated here...that it's just a herx due to a high bacterial load...etc..

But they got worse and worse, and as I described earlier, came close to losing their life because they came so close to kidney failure. If that isn't "treatment failure", then with all due respect, I don't know what is.

And finally, I ask the question again: Has ANYONE gone off the drugs -- anyone, even Marshall or Rennie or whoever is left there -- so that they can say they were CURED by the MP?

Sincerely,

Kelli

p.s. Please note that the references you posted earlier...to my knowledge most of them were talks or presentations. Please correct me if I'm wrong, but it's my understanding that Marshall has tried to get published in prestigious medical journals, only to be turned down. A "PubMed" search will turn up nothing of his that has been accepted in any major journal. But I could be wrong on that and would appreciate a correction if I am...

----------- Hope0073:

I have known about the MP for about 4 years, if not longer.

I personally could not tolerate the Benicar--made my low aldosterone even lower and put me back in bed. I had gotten out of bed for about 2 hours a day thanks to low dose abx. I did light avoidance for about 18 mo. until I realized that it was doing nothing except making my already low quality of life even worse. The protocol did not work for me. It did not work for many I know.

I know several of the people who were originally on the MP board and have expressed their negative experiences, knowledge, and feelings in this thread and on other forums. I know many people from other forums who had a negative, even life-threatening exp. with the MP. I know many of the people who were kicked off or censored or sued by TM.

The MP is a very tough, controversial protocol. It apparently has helped some, although there are fewer success stories for Lymies. I personally don't know of anyone, except TM, who even after years on the protocol, are off the meds.

I am happy, happy for those that have toughed it out and have obviously benefitted. However, I must caution those considering it to do in-depth, painstaking research and be extremely cautious in trying it.

I will not respond to any queries. I rarely visit Lymenet. But I had heard of the current discussion on some other lists and felt I needed to share my personal experience and knowledge of it. FWIW.

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Barksplinter:

My wife is one that thinks MP harmed her. She is a very bright health care professional who very closely followed the MP guidelines. SEVERAL of her friends tried it and NONE were helped.

Some feel that intense long herxing is harming tissues.... especially NEURO tissues... whether the protocol is Marshall's or some other.

As others have noted Picking your protocols is and extremely important duty for "Lyme" sufferers. Unfortunately many are too ill to do ALL the homework that is required. That is the beauty of sites like this. They help those with less ability to process information.

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Kelmo:

My LLMD told Marshall HIMSELF that he was WRONG.

Several people in my Lyme support group did the MP for three years.

No improvement.

If it works for you...why are you here?!

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Charlie:

I done told you guys that Rosemary (rosesisland 2000) landed in the ER with dangerously low BP from taking that benicar stuff. TuTu substantiated it.

Of course it just 'conveniently' got forgotten by the vit D avoidance crowd.

I have no idea how to get ahold of Rosemary or I bet she'd elaborate.....