Serious Side Effects Risks of Marshall Protocol

Discussion in 'Fibromyalgia Main Forum' started by jenbooks13, Aug 26, 2008.

  1. jenbooks13

    jenbooks13 New Member

    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.


    Marshall Protocol from Lymenet Discussion in 07


    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:


    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 ..."

    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)?



    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?



    p.s. Please note that the references you posted 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...


    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.



    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.



    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?!



    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.....

  2. ladybugmandy

    ladybugmandy Member

    why aren't there any regulating bodies looking into the MP site? are moderators or nurses or whatever they are, allowed to dispense medical information online for someone they haven't even met????

    the last i checked, even doctors aren't allowed to give medical information online!

    what is going on here????
  3. victoria

    victoria New Member

    who does the MP has a supervising doctor of their own, obviously, no other way get an rx.

    And the doctors do make the ultimate decisions as to what to do, even if it's as simple as not re-prescribing the meds.

    That's the end of my posting on this, as I - and my doctor - agree I'm not having any ill effects from trying it, only good so far.

    TG we're allowed some freedom of choice is all the more I'll say.

    have a good night.
  4. victoria

    victoria New Member

    the ulcer & h. pylori science ... took what, 30 years to become mainstream? Even tho abx doesn't cure all ulcers (mine included unfortunately). I don't think the guai protocol is accepted either, likely not many protocols for CF/FM/ME are from what I've heard from doctors.

    "Every great advance in science has issued from a new audacity of imagination."--John Dewey

    "Louis Pasteur's theory of germs is ridiculous fiction!"
    --Pierre Pachet, esteemed Professor of Physiology at Toulouse in 1872

    As I've said before, haven't seen one protocol that has worked for everyone, but most all seem to work on small populations. IMHO that is an indication we comprise small groups of similarly infected and/or genetically compromised patients.

    And, as I also have posted, success stories can be found at

    Bashing of every protocol AND every forum can be found on most all the other forums, including this one.

    C'est la vie, seems to be the human condition, healthy or not.

    buenos noches, too tired to spar anymore...

    [This Message was Edited on 08/26/2008]
  5. heapsreal

    heapsreal New Member

    If you under go the MP you need to be under a competent doctor and have regular blood tests for liver and kidney function. I have said in another post that my doc uses the MP but has found it causes abnormal blood tests in youngish males like me (37yo and still young).
    Jenbooks am interested on what antibiotic protocol you followed after the MP and did it help.
  6. jenbooks13

    jenbooks13 New Member

    Heapsreal I never did the MP.

    Victoria, a few weeks of abx for ulcers is quite different than years of benicar, rotating abx, and Vitamin D deprivation.
  7. hopeliveshere

    hopeliveshere New Member

    OK if Jen is soooo right????? (REMEMBER SHE HAS NEVER DONE THE MP)

    Then I have to ask why do doctors have hundred of patients on the MP? And why have a lot of the doctors done the MP themselves?????????

    Why does anyone on the MP not get metastic cancers?

    Why are people getting a life they never knew with the MP?



    Jen is right about one thing. The MP can be to difficult for those who already sooo sick they cannot handle the immunopathology.

    I deleted my post because I can not babysit those who can see the writing on the wall.

    You all can wait until your to sick but I AM GETTING MY LIFE BACK LIKE I NEVER KNEW WITH THE MP!!!!!!!!!!!!

    See for more patient interviews and great articles.

    OH AND I KNEW OF THE COMPLAINTS YOU SPEAK ABOUT JEN BEFORE STARTING THE MP AND I DID MY OWN RESEARCH and am glad I did!!!!! So what you speak of is old very old news!!!!

    All Best, Hope[This Message was Edited on 08/27/2008]
  8. victoria

    victoria New Member

    it is still considered 'standard med' to give years of abx for acne.

  9. jenbooks13

    jenbooks13 New Member

    on the MP. There is a very interesting link in parentheses that gives some factual information about TM's background that really gives pause. I leave it up to you to get to Ken's site, just google "Marshall Protocol Risks" and you'll get right to that page. Please take time to browse Ken's pages thoroughly including the links. It is very explicit and detailed and well thought out.
  10. spacee

    spacee Member

    The FDA IS looking at the MP because one of their employees has SARC. They want to see if it is a viable treatment for sarc.

    I have a good friend, Barney, who has sarc and is now a very happy newlywed because of the MP. No, she is not totally med free but she is doing extremely well.

    I agree there are pros and cons to the MP. What treatment has EVER worked for all of us.

    Dr. Sujay who used to post here and has/had CFS uses the MP with her patients. She is a wise doc and monitors her patients carefully. I have talked personally with her nurse.

  11. hopeliveshere

    hopeliveshere New Member

    You will see hundreds of people doing the MP...doing it right and doing it safely....WWW.MARSHALLPROTOCOL.COM


    I would rely on doctors with hundred of patients on the MP, and the hundreds of patients that are reporting on the site more than the others here WHO HAVE NOT DONE THE MP, COULD NOT TOLERATE th immunopathology, OR PLAINLY DID IT WRONG.

    IT IS GIVING MY LIFE BACK!!!!!!!!!!!!!!!!!!!!!!!!!!! And many others just read for indepth intervews.

    All Best, Hope
    [This Message was Edited on 08/27/2008]
  12. victoria

    victoria New Member

    Again, no one does well with every treatment. We're beating a dead horse here. There obviously ARE people who are being helped with a variety of conditions with the MP.

    As far as abx being used for acne, it is most definitely NOT something of the past...

    I know plenty of friends' kids first-hand who have taken it within the last 5 years, and still do, for acne. This has not been recognized as a mistake by most doctors.

    That said, everyone should evaluate whether ANY treatment is right for them with the help of a knowledgeable doctor(s).

    all the best,
  13. jenbooks13

    jenbooks13 New Member

    Hope, I don't have to do a treatment to quote others who did it and reported back on its serious side effects.

    The MP should come with warnings about potential serious side effects.

    But it doesn't.

    You eliminated your thread because people posted "negatives" ie side effects.

    I don't mind you on my thread, but I won't be eliminating it. It will continue to gather information about risks and side effects of the MP. Almost dying of kidney failure is a bit too serious a side effect in my book.
  14. hopeliveshere

    hopeliveshere New Member

    Yes labs specifically Kidney function can go out of normal range even into the high range but after adjusting the antibiotics to allow the immunopathology to calm down one is able to safely proceed with the MP.

    I have seen this many times and is not unusual and this is stated on the MP site.

    I dont understand why you do not get this? All the MP savvy doctors see this and have confirmed it to be immunopathology. Even the patients who are on the MP understand this as they see it working.

    If it were permanent damage then patients would not be getting better and you would see permanent damage but this DOES NOT HAPPEN!!!!!!!!

    Have you talked with patients hundreds of them who experience this type of IP like I have?

    Have you talked to MP savvy doctors who have hundreds of patients who have immunopathology like I have?

    Jen I am glad you have this post here and your not going to delete it. It will give patients a good look at what immunopathology can look like. However like I said before it can be controlled and managed as one works through the immunopathology to wellness.

    The MP is not easy but I AM SO GLAD and THANKFUL for it as it has saved my life and many

    I challenge you to look further into the MP.

    All best, Hope
  15. RichieRich

    RichieRich New Member

    I've been on the MP almost two years. I was physically & cognitively disabled, primarily with mycoplasma pneumonia.

    I am finishing the phase 3 meds in the coming months, and have my life back. It's been a rough ride, but it beats being brain-dead....or dead!

  16. jenbooks13

    jenbooks13 New Member

    Hope, just because you are doing better (which nobody is denying) or some others are doing better(it looks like you or somebody recruited Richie Rich to this site as this is his first and only post) does not mean that there are not serious risks and side effects to the protocol that must be acknowledged up front. And just because TM calls coming close to kidney failure "immunopathology" does not mean he is correct in his interpretation.

    I challenge *you* to clearly state the risks and side effects.

    As I recall, after 4 years, Aussie Barb, a prime MP proponent, ended up in the hospital for a month in critical condition. I think her gallbladder was infected, and I think she developed pancreatitis. I haven't followed up and don't know how she's done since. Is this because of immunopathology after 4 years? Or was she immunosuppressed from low Vitamin D and benicar?

    There are various interpretations.

    Good luck, at least this thread contains some of the "negatives" and you can't delete that.

    [This Message was Edited on 08/28/2008]
  17. hopeliveshere

    hopeliveshere New Member

    Jen your funny.

    You can say all the negative you want. Immunopathology is immunopathology it is as simple as that.

    I have no idea who RichieRich but am very gald to see him here.

    Keep saying all you want about the MP it will come out in the wash.

    I am sooooo glad all the nay saying like you are doing did not stop me from doing the MP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    [This Message was Edited on 08/28/2008]
  18. jarjar

    jarjar New Member

    It has been the only thing that has brought me back to life.
    I have been ill since 1988 with cfs/lyme and it is the only thing that has worked.

    Ken was a pioneer of the MP and yes he had a negative reaction but a lot of new things have been learned since then.

    As mentioned Sujay the beloved Dr. who use to post here went into recovery and returned to become seeing patients full time due to the MP. Last I heard she had around 250 people on the Mp but she sees or talks to them monthly so she can closely monintor them.
    Even one of her staff members who was bedridden recovered on the MP and works for her full time.

    Does it work for every single patient no! I know 3 people that their body just couldn't tolerate benicar and they had to get off. But what treatment works for eveyone?

    As far as lymenet they are famous for bashing the MP. People use to report their success stories there and were only met with harsh remarks. Lonestartick was a prime example. She was doing all the IV abx and oral abx like most on Lymenet and was not getting anywhere.
    She is a friend of mine I should mention so I know how well she is doing. So she post her success on Lymenet only to hear snide remarks well you must not have lyme and on and on.

    The majority of MP patients stay away from Lymenet due to the negativity when they here people are getting their lives back. It's almost like they are jealous.

    If you want to try it you really need to find a Dr. that is very familiar with it.

    I should mention Dr. Marshall is a biomedical engineer, for those that don't understand they seek out treatments for diseases. His wife has a degree in pharmacology.

    [This Message was Edited on 08/28/2008]
  19. victoria

    victoria New Member

    good post!

    all the best,
  20. hopeliveshere

    hopeliveshere New Member

    This is part of an interview with a patient on the MP who had done IV antibiotics with little success prior to the MP. You can find this and other full interviews at


    What advice do you have for patients starting the MP?


    Be patient during your immunopathology (herxes). Sometimes you may doubt the fact that your symptoms are the result of immunopathology, but as someone who battled those same doubts and has now largely recovered, I assure you that once you become symptomatic on the MP, your symptoms are almost certainly the result of your body killing bacteria. Have faith and ride through your herxes, but stay in touch with your doctor. It’s sad, because some people drop out at the start of the MP because they can’t get their minds around the idea that feeling bad after starting the treatment is not a sign that their disease is progressing but a sign that they are killing bacteria as expected. Sometimes people feel very bad after starting the MP but, since the rise in symptoms is due to immunopathology, it’s actually a sign that the treatment is working TOO well (too many bacteria are being killed) rather than not working.


    What lies ahead?


    Now that I’m getting my life back, I feel like a kid in a candy store. I’ve just become a Grandpa and I feel confident that I will live to see my grandchildren graduate from high school and college - something I would never have dreamed possible before the MP. The lost opportunities in my career and the high-dose antibiotic therapy that I did for six years has cost me well over $100,000, so I’m ramping up my career again in order to become more financially stable. But I’m basically a life hog - I have the freedom to enjoy the rest of my life. I cry at sunsets, I’m gentler with people, and I’m also an activist. I want to do everything in my power to promote the Marshall Protocol and to help doctors understand the treatment and recommend it to their patients.

    My son calls me the “Lyme Crusader.” I’ll literally stand in line at the grocery store and ask people if they know of anyone with inflammatory disease. Then I’ll hand them a flyer with information about the MP. The treatment has worked so well for me that I can’t just stand around and watch other people with chronic disease suffer when I know the MP can give them their lives back.

    I am eternally grateful for Dr. Marshall and the others who have made such a difference in defeating these diseases.
    [This Message was Edited on 08/28/2008]