The Marshall Protocol looks downright dangerous

Discussion in 'Fibromyalgia Main Forum' started by Jeanne-in-Canada, Apr 8, 2005.

  1. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Anyone try it? I've seen it mentioned, but finally took a gander and found out they want to deprive you of all forms of vitamin D, esp. the most crucial sourcs for the body, the form from sunlight manufactured in the skin. This form is really a hormone btw, and lack can cause or aggravate depression. Then they attack your system w/ multiple antibiotics. Ack. Most of us have candida yeast problems.

    Sorry to anyone who's tried it and loved it, but it sounds horrid. I'd like to hear your experiences.
  2. jarjar

    jarjar New Member

    If you study the site more you will find answers to your question. First of all most people on the protocol take probiotics along with the program. If you have severe yeast problems you probably would want to take care of that firsr. As far as antibiotic doseages the doses are low and are not taken every day. Some are only taken every ten days at low doses.

    The program deals with killing imflamational bacteria that thrives on sunlight or vitamen D found in foods. So you need to avoid that to kill the bacteria.

    Hope this help you some,

    jar
  3. victoria

    victoria New Member

    took away what was becoming crippling hip pain; also have had to lower my Armour thyroid med from 3 grains, to 1 grain; almost unheard of to do that. The abx, as Jarjar said, are very low, have had no problems with it.

    Please continue to read, especially other people's progress with it. So far I haven't seen anything that works for every signle person, but I am definitely seeing results I'm amazed by.

    read people's progress at the marshallprotocolsite; if you want to read mine, my user name there is Ava

    all the best,
    Victoria
  4. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Seems it can improve some w/ Lyme disease, but not all. I was put on the low dose, alternate day protocol for mycoplasms about 6 yrs ago. My doc knew I had candida, I voiced my concerns, but I trusted her too much and listened to her even though my GP was dubious, and against it w/ my having candida already. She assured me w/ probiotic support, I'd be fine and as the mycoplasms were under control my immune system would kick in and fight off the rest. My yeast problem though systemic, was mostly intestinal. I rarely had vaginitis. the treatment gave me chronic vaginal yeast to this day. It was a nightmare, they were back to back, to back, it became the worst part of my syndrome, worse than pain and that was constant. Took me yrs to get it down to once a mth, but bad flares and holiday eating will give me rough mths again. I couldn't roll over, turn on a lamp, anything w/out agony. I'd herx every 2nd day when on the ab's. The wortst thing is it didn't even do what it promised. The mycoplasms came back and wax and wane like everything else.

    Took me years to gain that ground back.

    I'm still interested to hear other's success or failure stories, as I know several w/ worse FM than myself and we all have different root causes so I'd like as many options to suggest as possible. Other's I know w/ it are way too sick to even research for themselves.

    My best bet lately is the Questran neurotoxin treatment. I move in three wks and will start after, as it can herx bad before improvement. I've got my boots on for that though, the only herxing that wasn't worth it for me was the ab's. Can't wait to let you all know how it goes. I have a great feeling about it and hope it's the key for me. We have to keep trying, right.


    Jeanne
  5. tansy

    tansy New Member

    with the move and the Questran neurotoxin treatment, in view of your MCS it would seem worthwhile trying. Others have done well on it, especially if the main reason for their symptoms and lack of progress on other protocols is neurotoxins. I look forward to reading your feedback.

    The MP certainly has an affect, some like Victoria seem to be doing well on it, but many more have had to jump ship having become even more ill. IMHO anyone contemplating the MP should research its pros and cons very carefully first. The official MP board is strictly moderated and so does not provide the whole picture. Ken Lassesen has provided a CFIDS web site I used when researching hypercoagulation, there you will see the other side of the vit D theory and possible ill-effects from long-term high doses of benicar. http://lassesen.com/cfids/contents.htm

    Love, Tansy
  6. Mikie

    Mikie Moderator

    There is a transfer factor for mycoplasmas, but so far, the doc has to get it for patients. There are herbal remedies as well.

    It can take years to rid the body of mycoplasmas. It took 2 1/2 years on Doxycycline to get rid of mine. I had no problems with it, other than Herxing. I have always taken probiotics and I added colostrum and whey to my regimen. Not all ABX are effective against mycoplasmas and patients may tolerate one better than another. It can be trial and error.

    I added Heparin to the regimen which helped a great deal. I took Famvir for viral infections for 1 1/2 years with good results. Finally, I decided to do the transfer factors and they have been amazing. Anything one does which kills massive amounts of pathogens in the body makes one worse before one gets better. It takes patience.

    Good luck with whatever plan you decide to try.

  7. jarjar

    jarjar New Member

    I as well as my Dr. and most of her cfs patients are making progress with the Marshall Protocol. AS far as
    benicar goes it is a safe drug. One person tried to commit suicide on it and took the whole bottle and nothing happened. The original marshall protocol called for benicar 4x a day. For those of us with CFS some have a tough time with that so you can switch to 3x a day with quercetin. 4x a day made my body too sluggish but 3x worked out much better. I'm aware of Kens love of bashing the Marshall Protocol but with cfs everyone responds different and in the case of the MP some have to add more salt to their diet or take smaller doseages. Or some people are so sensitive that the program is not for them.

    At this time the jury is out as many are getting better but no cfs patients have been on it long enough to reach a 100% remission. It can take up to 2 years to reach that point. I do know my Dr. known on this site as Dr. Sujay is back to seeing patients 4days a week due to the MP.
    Only time will tell for us with the protocol as it is a big
    experiment at this point for all of us.
    [This Message was Edited on 04/10/2005]
  8. Mikie

    Mikie Moderator

    Sujay is seeing patients. I'm also glad to hear from members who are on the MP. These treatments do take time and there is often a lot of trial and error involved in finding just the right combinations and doses.

    Good luck to everyone who is on the MP and please, do keep us updated.

    Love, Mikie
  9. tansy

    tansy New Member

    Jarjar unfortunately I cannot post the URLs for the message boards where all issues concerning the various aspect of the MP are discussed. These discussions and debates involve those who are on the MP and feel it is right for them, those who have had to drop out because it has made them worse (not herxing or the healing process), and those who express concerns over its potential risks.

    Here are Paul Cheney's comments on the use of ARBs; please note, like others and myself, Dr Cheney recognises Trevor Marshall has identified an important part of the puzzle.


    Marshall Protocol & "Q" (Q refers to the cardiac issues identified by several researchers including himself)

    My hat is off to Trevor Marshall for identifying that the Renin Angiotensin System (RAS) is a key element in the pathology of this disease and pointing out that it acts locally as well as systemically. I didn't know that before. But I'm concerned that an ARB (Angiotensin Receptor Blocker) is being used in CFIDS patients without an awareness of its effect on "Q."

    Angiotensin II has two receptors that we know of, and we only understand the first, AT1. When Angiotensin II binds to AT1, it increases the hormone Aldosterone, which in turn increases blood volume. Big issue! If you block AT1 with an ARB [like Benicar], down will go your Aldosterone, and down will go your blood volume, and you could be in a heap of trouble. ARBs that bind to AT1 will constrict blood volume.

    I'm also concerned that the other receptor [AT2] is being ignored. No one knows what it does. Not even Merck! I suspect that it has an immune effect. An ARB like Benicar selectively binds very tightly to AT1, resulting in a two—to three-fold increase of Angiotensin II, which then binds to the wide-open AT2 receptor. And who knows what kind of immune responses that is setting off. This is just speculation, but I am concerned.

    "I don't believe that you can block a regulatory pathway, especially tightly, with a rebound upregulation of Angiotensin II, two or three fold, when you leave unblocked an unexplained receptor that you have no idea what that thing is doing and then hope that down the road everything will be rosy."
    [This Message was Edited on 04/10/2005]
  10. Mikie

    Mikie Moderator

    I have avoided the MP because of the vit. D issue, but I wasn't aware of the Benicar issue. I do know that Dr. Cheney and others will be discussing a possible connection between CFIDS and cardiomyopathy at the convention near Dallas in June. I look forward to hearing what he and others have to say on the subject.

    We have already had other articles on this posted here.

    With two concerns, the vit. D and the Benecar, I am glad I decided to take a "wait 'n see" attitude toward the MP. Your info has confirmed that I made the right decision. Thanks again.

    Love, Mikie
  11. mommysisland

    mommysisland New Member


    I tried the MP last summer and got markedly, intolerably worse.

    I have adrenal insufficiency and as Dr. Cheney stated [in a post above], Benicar necessarily lowers aldosterone (an adrenal hormone), which in turn lowers blood pressure -- further. That is Benicar's primary purpose -- to lower BP. Most patients with adrenal problems have low BP already. For this reason I won't be trying it again anytime soon.

    While I think the MP is in many ways brilliant, I'm bothered by the inflexibility of its presentation -- it is insisted that this is THE answer for everyone with a "Th1 illness" (which the MP defines as including CFS/FM and related diagnoses and some not so related). Mercury, MCS, are not different, Adrenal insufficiency, Orthostatic intolerance, not different. Lyme is not different, MS is not different, etc... There is no different step for any particular presentation. It is one size fits all, (which is, at least, convenient).

    The site has become intolerant of any probing questioning on the adrenal question and other areas which seem especially open to healthy skepticism and discussion. In my opinion it's a "my way or the highway" kind of place. For those for whom the MP is working, I guess they can rightly say, "so what?" For those who are struggling and feel uncomfortable asking a question which might go beyond MP comfortability, I think it is at a minimum, unsettling.

    The proof of whether the MP really is THE answer for all of us will only be known in time.

    I do think the MP is working for some, and I'm glad to see it and continue to follow the progress of a few members who started around the same time I did and whom are still on it. I admire them as well, as it isn't an easy protocol to stay on.

    My own observation/thinking is that the MP is particulary effective for those with a high D ratio, (as in 4+). That wasn't me, and that is not the bulk of the CFS patients presenting test results.

    For those without such a ratio, there are many peer-reviewed research articles of fairly recent date on the need for Vitamin D (and particularly D 1,25) to combat diseases such as CFS, MS and Cancers, among others. This is in direct contrast to the MP tenets. Is it a good idea to restrict Vitamin D in these individuals?

    It wasn't a good idea for ME. My thought is everyone presents a unique situation and must be evaluated with that in mind.

    I think the Marshall Protocol is a perfect example of a protocol which should be carefully and thoroughly evaluated, both by prospective patients and their doctors. Searching the MP site is a start, but should not be the finish line in my view.

    Offered for what it is worth...

    Jessica
  12. victoria

    victoria New Member

    my ratio wasn't as high as Jessica's, but so far it is working. I was a bit dizzy in the first month, but am fine now; and my BP has always been on the low side, but not dangerously so.

    I became interested in the MP because every doctor I've seen for CF or my chronic sinusitis (that is not caused by any infection/physical obstruction) just keeps telling me it is indicative of generalized inflammation. I have taken loads of supplements, and while they have worked in the past many times for many other problems, supplements never did anything for more than a month for the fatigue or my usually daily headaches - and I've tried everything.

    I also tried high levels of D with intially good effects for hip pain, but it returned within a few months. This time, it has been gone for far longer.

    I realize that there are those it (the MP) hasn't worked for, due to other underlying problems, but there are many it is working for. Does any protocol work for everyone or 100% safe so far?

    Right now this is just an experiment; if it were sponsored by a private organization, or even public, no one would have any idea of how overall it was working until the study was over, or be able to really have any discussion about it before or after.

    Example: I was interested in Dr. Moskowitz' protocol, which used an ARB, but couldn't get a doctor to rx it for me because of his (Dr. M's) proprietary restrictions on owning the protocol (intellectual property), first of all. IE, if it works, you'll have to pay his company to use it even tho your doctor is overseeing you and taking the responsibility.

    I have never seen anyone posting here or elsewhere about how well they're doing on it, or not, unfortunately; it would be interesting to see just by way of comparison. If anyone knows of where anyone's discussing Moskowitz's approach and how well it's working, please let me know what words to google.

    By way of comparison, Trevor Marshall has been generous enough to share what he knows and has given a lot of his time freely, unlike many of the other researchers I have heard about.

    So, unfortunately I can see why Marshall has had to restrict speculation, discussion, etc. as otherwise how does one get hard data to show or not show anything. Anecdotal reports are the first step to getting funded for studies I believe?

    Re the aldosterone, I was reading on one of the lists about heparin also possibly causing low aldosterone I believe, something that I have never read before nor seen brought up here or anywhere else. And yes, BTW, I am planning on getting my levels tested just as a precaution.

    I haven't seen any protocol yet that doesn't incur some risk, nor any protocol that is the magic bullet. wish there was one, but it does seem that every protocol that's out there has a small core of people who did do better, and as many or even more who didn't.

    Each one of us has to take the responsibility to decide what risks we are willing to take and what makes sense/what seems to fit with our problems. I have personally so far gotten more results - few but significant in impact - from this than I have from anything else.

    BTW, if anyone who's been here for a while goes over there (marshall protocol site) and looks at the postings of those who are happy with the protocol, you will see some names you'll recognize from this board.

    OK, so I'm seeming like I'm in a bit of a rant, altho not angry, just feel the need to explain why I chose to do it and my philosophy.

    all the best to all,
    Victoria
    [This Message was Edited on 04/10/2005]
    [This Message was Edited on 04/10/2005]
  13. ohmyaching

    ohmyaching New Member

    As I understand it Trevor Marshall had sarcoidosis which he cured/ caused to go into remission with this program. In effect he had the cure before he had the full reasoning as to the why and how for his cure.
    Some CFS patients started using his protocol and claimed that they were getting positive results which I believe led to the idea that CFS was a Th1 illness like sarcoidosis and could possibly be treated the same.
    Much of the research is still being done and the answers sought. Most candidates for the protocol have recognized elevated levels of vit. D.
    According to Trevor Marshall Th1 illness is the result of teeny tiny cell wall deficient bacteria that undermine our immune system with the use of vit. D. Decreasing the amount of vit. D available to these bacteria decreases their proliferation and the damage they can do. It would seem to me that there are a number of ways to combat these bacteria. The folks at the Marshall Protocol want people on the protocol to stick to their directions because it is proven effective against sarc. Many people tend to bend these instructions and so the folks at the Marshall Protocol are pretty strict about adherence so people won't get confused.

    Remember diagnosing the cause of CFS is not an exact science. There may be other causes mistaken as CFS or even more than one cause for the symptoms.
    [This Message was Edited on 04/10/2005]
  14. victoria

    victoria New Member

    thanks for the succinct explanation. . . are you doing the MP?

    Victoria
  15. ohmyaching

    ohmyaching New Member

    Victoria,
    So far I have the Noir glasses. I had to attend to having my gallbladder removed and so never progressed beyond that.
  16. victoria

    victoria New Member

    hope you are feeling better? - how long ago did you have your gallbladder removed?

    There are some who feel better just using the noIR glasses and avoiding light, are you trying it? and are you planning on starting the MP soon, or still in recovery?

    ahhh yes, I've become more of a night owl these days, but was always prone to it. Like the full moon cycle best, lol.

    all the best-Victoria

  17. slowdreamer

    slowdreamer New Member

    Thanks Victoria for detailed and fair presentation. Having spent the morning on the Marshall protocol site I was intrigued to read your post.
    Your points about how the world works especially medical research were well made
    For me inflammation in response to internal and external triggers rings a bell.
    Trevor Marshall was interviewed on Oz radio this week and his audio and transcript have a prominent position on the web page of the national broadcaster so i am standing by for further discussion down here.
    He's Australian so how could I not check it out!Perhaps he will get a Nobel prize like his colleagues from the same university in Australia.
    Congratulations to you for your courage in taking up the regime and Good Luck.
  18. Banka8

    Banka8 New Member

    Slowdreamer,

    Glad to see you have the wisdom to see the science behind the Marshall Protocol. We have many people form Australia on the MP.

    I'm in Phase 2 and seeing progress all the time. But I have a long way to go.

    It took me a year to get started because I had to find a doctor in my area and I had some family issues to take care of. I feel optomistic for the first time since I got sick 19 years ago.

    Good Luck on your journey to health.

    Judy
  19. jfrustrated

    jfrustrated New Member

    I am following this thread with interest and appreciate the various ideas. I am not on the MP. My CFS doctor does have some patients on it and he is monitoring their progress carefully. One of them was pressuring me to go on and so I checked with him. He said "Not for you, not yet." (also my Vit d levels are very low: had the right vit d tests!) He is concerned, in my case, that my digestive system is too weak and that overall, I do not have the stamina to handle the herx. That's what he said at least. I almost feel that I have failed a test! I am not well enough to be sick enough to be treated - if you know what I mean. But it does show that he, at least, believes that it is not for everyone with CFS - and he is very knowledgeable. Tansy, thanks for the website re. lassesen
    [This Message was Edited on 10/21/2005]
  20. dontlikeliver

    dontlikeliver New Member

    A friend of mine with Lyme went on it for six months and ended up very much worse on the MP and had to stop.

    She returned to Dr B's protocol and after several months has finally got much better again.

    DLL