Moving post from Health Board...CFS/Marshall Protocol doctor under investi

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Debra49659, Aug 8, 2009.

  1. Debra49659

    Debra49659 New Member

    kwar
    4/7/09 12:51 PM CFS/Marshall Protocol doctor under investigation by medical board?

    Hi, I'm new here.

    i wanted to start the Marshall Protocol but i got told today bya patient there that a doctor is being investigated by the Washington State Medical board because a whole bunch of her patients were hurt by taking it.

    Does anyone know anything about it? The doctor is a Dr Susan J Shlifer.

    there's a link to the investigation here http://tinyurl.com/d8j4t5

    Please tell me if you know about this i really need to know if this is safe or not.

    kwar




    TwoCatDoctors
    4/7/09 2:38 PM Hi Kwar

    This would be very good to post on the ME/Chronic Fatigue Syndrome board here for them to participate.



    BluesDog
    8/4/09 9:59 PM Marshall protocol

    I am new here also, but not to ProHealth or CFS organizations. I was for 20 years with one of the nations premier CFS physicians, he is on the CFIDS physician advisory board, and a published researcher. I was going to try the Marshall protocol, and he advised against it, saying that not one of his patients who had been on it achieved any significant results whatsoever. This internist, who shall remain nameless, has devoted himself to CFS for 20 years, and is one of the most honest and intelligent people I have met, let alone among physicians. This voice of extreme experience convinced me that it was not worth trying. The fact that it has been around for years, and has not caught on as a general cure-all for these conditions, also convinced me it was not the "magic bullet." Sounds good on paper though. Good luck.



    TwoCatDoctors
    8/5/09 11:56 AM Hi Blues Dog

    I strongly suggest you put a copy of your post on the Chronic Fatigue board here, if you have not already. It would be very helpful for them.
  2. EdwinaEarthshine

    EdwinaEarthshine New Member

    Greetings all! I found this forum in a google search on my Doctor Susan Schlifer. She was recently forced to stop treating patients with the Marshall Protocol which I have been on since August of 2011 and recently was forced to stop.

    I was referred to Dr. Schlifer by my former doctor who no longer knew how to treat my rapidly deteriorating condition. When I first started the MP I thought I was dying. I was nearly bedbound. Dr. Shlifer never shoved the MP down my throat. She offered the documentation on how the MP is used and why and let me make my own decision about trying it. I thought that the theories of Th1 immune dysfunction as a cause of these illnesses made sense.

    After being on the MP for 18 mos. I improved significantly. I was nowhere near being able to lead a normal life and be employed and such but I was stable, and my symptoms were controlled and minimized. I have since been forced to quit the MP because of the state board coming in and forcing the doctor to stop treating patients with the MP.

    My condition has worsened again after stopping the MP and stopping the Benicar. I am still with Dr. Schlifer who is not perfect, but who is willing to think outside the box and to do everything she can to help treat my illness. Now we have moved on to trying LDN and some assorted supplements to address the immune dysfunction that we see as the underlying cause of this illness.

    My view is that in the history of medicine, the mainstream has been very resistant to change. The recent mapping of the entire human genome has led to new and startling discoveries of the way microorganisms interact with the human body. The medical profession needs to change and see infectious disease from a different paradigm if the sufferers of "medically unexplained" illnesses are to have hope of effective treatments or cures.

    I feel it is sad and tragic that innovators and pioneers in the medical field are punished, but unfortunately history is full of this kind of resistance.

  3. EdwinaEarthshine

    EdwinaEarthshine New Member

    An addendum to my previous post is regarding Dr. Schlifer's record keeping procedures. I am unsure why people are accusing her of keeping inadequate records. Every time I go in to see her I fill out many pages of details about my symptoms. I've never been to a doctor who kept more thorough track of what was going on with me.

  4. zeowa

    zeowa New Member

    Hi,
    I can just share my personal experience with you. I saw the Dr. stated above about 5 years ago and was told that it would be a very good idea for me to try the Marshall Protocol. I declined to start it the day I saw her and told her I would think about it. With a little time, I could not see the benefit of something that required such profound life changes based on what I saw to be questionable science (b/c the information available in terms of results was only available through Trevor Marshall himself--same with the science backing the protocol), and decided not to do it.

    In the past year I began to work with a healthcare professional with whom I shared that I had previously considered the Marshall Protocol. This person stated that they shared several patients with Dr. Schlifer and saw extremely troubling things (versus CFS/FM patients not on the Marshall protocol). So, this is not a huge surprise to me in some respects, but I do hope a thorough investigation takes place as I continue to hope that more doctors, etc. will take up the cause of working with CFS/FM patients.

  5. victoria

    victoria New Member

    MP is controversial as is the methylation protocol and others. There are a lot of posts here about the MP... for me it has given me gains with no harm.

    Anyone can bring charges, but what happens depends not only on quality of care or lack of it, but also the political climate... those doctors who make decisions to try new possibilities are always at risk. For instance, the only pediatrician in the US who will treat children with chronic lyme has been bankrupted by charges, and told if he stops practicing they'll drop it all.

    Speaking more broadly, I have MD friends who have had charges brought by disgruntled pts... there was no basis in the cases and they were acquitted. On the other hand, my husband was abandoned by his doctor after getting positive results on a test and the med board did nothing.

    for some the MP is not do-able obviously; and if you do it, make sure you have a doctor who is experienced with treating pts.

    Basically, you have to educate yourself as much as possible... few treatments work for the variety of things that have been found in CF/FM/ME pts who have been ill for a long time.

    all the best,
    Victoria



  6. victoria

    victoria New Member

    also if you search the articles here in the research library, you will find several written by those who have done it, and also about it...

    some:

    http://www.prohealth.com//library/showArticle.cfm?libid=12363

    http://www.prohealth.com/library/showarticle.cfm?id=7676&T=CFIDS_FM

    http://www.prohealth.com//library/showArticle.cfm?libid=10677

    part 1:
    http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170371/pg_8/
    part 2:
    http://www.townsendletter.com/Jan2009/vitaminD0109.htm
    Waterhouse has written a lot about the MP, her site is:
    http://bacteriality.com/2008/03/22/vitamind2/



    And as always, i agree to disagree civilly, just want a balanced picture for all to decide.

    all the best,
    Victoria



    [This Message was Edited on 08/11/2009]
  7. dannybex

    dannybex Member

    I'm glad you're feeling better Victoria, and yes, I really appreciate your polite and positive tone. I too think that things can be discussed or disagreed upon with civility and respect, so I hope you won't take my question the wrong way...

    And that question is this: Have you stopped taking the MP antibiotics and benicar, and/or do you know anyone who has?

    I've asked this question many times, and never hear of any names. I think even Marshall still takes the drugs, even though 5-6 years ago he said it was a 2-ish year protocol.

    As for Dr. Shlifer, she's in my neck of the woods -- I know people who personally were under her 'care', and every single one of them stopped treatment because of (in some cases) life-threatening harm.

    As for the cases brought against her above, I haven't heard of an update yet, but at the very least, if the charges are true, it sounds like she was quite careless about testing and record keeping. ???

    Dan
  8. victoria

    victoria New Member

    I have stopped and started the MP due to many 'life drama's getting in the way of being able to do the protocol straight thru as I would've and should've done. That said, I'm starting phase 3, 4 years after starting phase 1.

    My #1 priority was my son being dx'd with lyme in 2005 (CDC+ 2X within 6 months in 2005, still disabled tho better than at the onset), #2 was taking care of in-laws for 2 years and then moving to Mexico, which brings me to now. Very hard to be herxing and do any of that, but I did get phase 2 done just before moving. And I have to repeat, I'd have never recognized my son's symptoms if I hadn't gone thru what all I have even tho my problems started majorly with mono for a year at age 18.

    Now to answer your questions...
    I don't know if she kept good records or not, that remains to be seen as anyone can make allegations; but I do know other doctors who have been guilty of that, usually all they get is a reprimand and oversight for a couple of years as to record keeping. IF guilty, that's not good of course. However, I do know someone that still sees Dr. S (jar-Jar) and the protocol has helped him immensely, he originally was also dx'd with CF/FM and then found out he had lyme (also/instead, who knows). (I myself found an old test from 2001 that showed I had lyme antibodies and should've gotten a WB, but nothing was mentioned, I missed it, but I know my problems started with having mono for over a year at 18 yo, tho steadily worse over past 10+ years)

    I don't mean to type a monologue, but, the point is I have had a LOT of stuff going on; the MP has helped me most and I'll let everyone knows what happens when I do finish part 3.

    To answer your other question, other than the person above, i haven't kept in touch with anyone on the MP, tho a support group was started in Georgia where I lived; I might get in touch with that person to see how she and others are doing. Celticladee came back to say she had bad results ultimately, altho she was enthusiastic for a while. 2 of the articles I posted above are by people who have been helped; also JC Waterhouse has been helped herself, was a member at one time too.

    Marshall does say that he's always believed that stealth pathogens are never gotten rid of, just kept in submission and recommends yearly prophylactic treatment.

    Same is recommended for those with chronic lyme and other stealth infections, so, I'm not sure if you're referring to that exactly or not. The last time I did a lot of reading on it, TM himself was doing it only so often, not continually.

    That said, the doctor I work with has only a few pts (with a variety of dx) on the MP, those with lyme or CF/FM haven't done well tho those with sarc have done the best. But that is only a sample of about 10 people when I asked him; I guess I'm the only one that was getting anything positive with CF/FM/lyme.

    IMHO, the MP is like so many other treatments I have read about for any of these seemingly unsolvable conditions. I've never seen one work for all to any significant degree, including the MP, other than maybe by improving diet (no sugar etc), have you?

    all the best,
    Victoria




    [This Message was Edited on 08/11/2009]
  9. dannybex

    dannybex Member

    Well, I guess we'll have to agree to disagree. :)

    Although I DO agree that 'one treatment' will never work for everyone -- that treatments must be tailored to each patient, depending on the causes of their CFS/Fibro, etc. The people I know who have recovered each had multiple issues, among them: parasites, candida, heavy metal toxicities, chemical exposures, pesticide, fungicide exposures, mold problems in their homes/apts, and very often, delayed food sensitivities.

    So each required different protocols/tests/treatments. Also, most of them were very low in vitamin d (25-d) and that alone helped many boost their recoveries by 25-40% or so.

    I do find it troubling that Marshall apparently thinks that long-term antibiotics are the only ways to keep these so-called 'stealth pathogens' under control.

    There was a very interesting talk on the radio the other day, where the author spoke about a wide variety of topics, one of them being how certain antibiotics (or the overuse of them) may have contributed to killing off of hookworms that were once thought to be 'bad guys', but in some cases may actually be beneficial in cases of autoimmune diseases.

    I know, it sounds ridiculous, and gross, but there are scientific studies to back up the claim:


    Abstract

    Inflammation and the genes, molecules, and biological pathways that lead to inflammatory processes influence many important and disparate biological processes and disease states that are quite often not generally considered classical inflammatory or autoimmune disorders. These include development, reproduction, aging, tumor development and tumor rejection, cardiovascular pathologies, metabolic disorders, as well as neurological and psychiatric disorders. This paper compares parallel aspects of autism and inflammatory disorders with an emphasis on asthma. These comparisons include epidemiological, morphometric, molecular, and genetic aspects of both disease types, contributing to a hypothesis of autism in the context of the immune based hygiene hypothesis. This hypothesis is meant to address the apparent rise in the prevalence of autism in the population.


    Can intestinal helminth infections (geohelminths) affect the development and expression of asthma and allergic disease?

    Abstract

    There are close parallels between inflammation associated with allergic disease and that caused by infections with helminth parasites. Both allergy and helminth infections are associated with elevated levels of IgE, tissue eosinophilia and mastocytosis, and CD4+ T cells that preferentially secrete the Th2 cytokines IL-4, IL-5, and IL-13. There is good evidence that the expression of inflammation caused by helminth infections can be modulated by the host immune response [3], and that the failure of the expression of similar mechanisms among individuals predisposed to allergy may be responsible for the clinical expression of allergic disease [4]. Further, there is accumulating evidence that helminth infections, particularly those caused by intestinal helminth parasites (or geohelminths) may be capable of modulating the expression of allergic disease. This review will examine the evidence for such a modulatory role of intestinal helminth infections (geohelminths) and will provide evidence that the expression of allergic inflammation in different regions of the Tropics may depend partly on local differences in the endemicity of geohelminth infections.


    Parasitic worms and inflammatory diseases.

    Abstract

    Latterly, the Hygiene Hypothesis has been extended to also incorporate autoimmune diseases in general. Amongst the various infectious agents, a particular emphasis has been put on the interaction between parasitic worms and humans. Worm parasites have co-evolved with the mammalian immune system for many millions of years and during this time, they have developed extremely effective strategies to modulate and evade host defences and so maintain their evolutionary fitness. It is therefore reasonable to conclude that the human immune system has been shaped by its relationship with parasitic worms and this may be a necessary requirement for maintaining our immunological health."

    It does make one wonder if the overuse of antibiotics during the past 20-30 years has really been the best way to go. Don't even need to mention the MRSA (or is it MSRA) tragedies...


    Just my two cents,

    Dan
  10. victoria

    victoria New Member

    Actually I agree with most of what you say... most of us do have more than one issue to address. And we probably live in a too-clean society, did you read about how children with older brothers have less asthma? (Because they're exposed to dirt more!) A young man we know here in Mexico has a grandfather, with only one leg, yet is 96 and quite healthy (and his grandmother is 87) despite living a life in the country that does not have all the amenities we'd think were necessary....

    And I agree especially about the overuse of abx AND doctors not educating their pts about why they needed to take a full course of abx and not quit when feeling better (saving the rest for another time in a stupid cost-saving effort).

    I subscribe to New Scientist, they were talking recently about a pioneering new way to treat cancer as some cancers are becoming resistant to CHEMOTHERAPY! That should tell us a lot.

    I am happy that I found the LLMD that worked with my son, as he never kept anyone on abx 24/7, it was pulsed at different times during the week (not every day), with weekends 'off' as well as 1 week per month... plus a whole month off as needed to let the body rest/recover. As these are slow growing pathogens, it worked I think without overwhelming his system too much. From tests and symptoms, he had lyme, bartonella and babesia.

    That said, my son had come as far as he could with the different meds after 3.5 years... he has and is still doing alternative protocols as well as keeping a very 'clean' diet (hypoglycemic, anti-candida, etc) as he is still disabled at age 22 now.

    So I agree that for most of us, we need to do more than one thing. For many years I found the most helpful thing for me overall was the candida diet, as yeasts and molds affected another autoimmune disease I have, endometriosis. It was a very direct effect - instant non-stop pain if I ate any of those foods until I took pau d'arco or nystatin.

    That said, I've found myself sensitive/allergic to herbs.

    I do not think I could've done the abx as my son did as I get allergies/sensitivities too quickly, which is why I chose the MP since the amounts of abx needed ARE so low (because of the benicar's action on the bacterias). My D1,25 test confirmed that it could work for me. the herxes and gains I made also confirmed that opinion. And given the amounts of time off for myself, tho not the way to do the MP even in my opinion, I'm not too worried as I also still pretty much have an anti-candida diet.

    As far as sunlight, I have to avoid it a lot anyway as I'm fair and have had skin cancer, my dermatologist told me to cover up anyway.

    I've had to take abx full strength for months several times to get rid of stubborn infections, particularly e. coli; my daughter had Rocky Mtn Spotted fever so was on a couple of abx IVs for 10 days plus a lot of oral abx for at least a month after. It was all scary. But sometimes you have to.

    There seems to be a downside to almost everything and I guess that's the risk we take, no matter what we have to do or try to do. I'm just for informed choice whenever possible.

    all the best,
    Victoria