Marshall Protocol has made me much worse

Discussion in 'Fibromyalgia Main Forum' started by reeves1, Nov 5, 2009.

  1. reeves1

    reeves1 New Member

    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]
  2. nah.stacey

    nah.stacey Member

    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.
  3. isiselixir

    isiselixir New Member

    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.
  4. spacee

    spacee Member

    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.

  5. ladybugmandy

    ladybugmandy Member

    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!

  6. ladybugmandy

    ladybugmandy Member

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

    JewelRA New Member

    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.
  8. bakeman

    bakeman New Member

    please tell us all!

  9. mrlondon

    mrlondon Member

    Hi - First of all, I would highly suggest that since you have sarcoidosis, that you join the yahoo sarcoidosis discussion group and get a recommendation for a doctor that treats sarcoidosis using alternative methods, which some do. You might need to try "real" antibiotic treatment. By real, I mean at levels that are more likely to significantly kill bacteria.

    I've read of a fair amount of success studies of the MP for treating sarcoidosis. On the other hand, I've also seen failurres, and some people have actually died. Perhaps it's due to the fact that Benicar can suppress the immune system. Only in the last few years have studies shown that ARBs can suppress the innate immune system. This is one reason why people can get worse on the MP (and wrongly attribute it to herxing). Perhaps if you had made it to Phase 3 of the MP, that you might have gotten better on the other antibiotics that they prescribe. Some sarcoidosis case studies have shown that macrolides have been able to treat sarcoidosis. But perhaps it would not have helped you. Your bacteria load may actually have increased to the point where you need significant doses of antibiotics.

    It's also possible that you have a mold problem. Do a search for mold and sarcoidosis, as there been some studies in europe that show mold is a factor for some people. Some people have gotten better on antifungal meds. The MP definitely doesn't treat mold related problems.

    Also, in order to get back out in the sun, you'll probably need to slowly increase exposure, in order to let your body adjust to it. This is especially true if you are not vitamin D deficient. The lower your vitamin D levels, the more sensitive you will be to the sun's ability to create vitamin D in your body. The same goes for your ability of your eyes being overly sensitive to the sun.

    Obviously though, if your 1,25(OH)2D levels are still high from the sarcoidosis, you don't want to get too much sunlight.

    I'm sorry that you are going through this. That's why I created a web page about the MP's theories, and how they compare with what the medical literature says.

    - Mark
  10. munch1958

    munch1958 Member

    I'm sorry you are going through this and I wish I could help you find some info on how to reverse the side effects of the MP. So little is known about it and there just isn't anything that I can find on Google.

    I have gone to one of the FFC clinics with some success. I am not sorry that I went there because I was given both the Quest Western Blot test and the Igenex Western Blot test which both showed Lyme band activity. LD was not even on my radar so it was never something that I was tested for even though I have 3 possible rashes that could have been from tick bites.

    If you go there just go for the testing. They run about $10 - $12K worth of testing on all new patients. It's very difficult to convince a doctor to run all of the tests that they do. I tried before going there to get someone to explore deeper into my issues but all I was ever offered was anti-depressants which didn't help.

    Basically, the tests they run are for everything that has been known or shown to cause fatigue. As a former patient there, I just rec'd a notice that they are doing some testing for the XMRV virus. I don't know what their treatment is for it yet.

    Then I would take those test results and find the very best doctors. Once you have the test results in your hand it's much easier to find someone to treat your specific issues. You give them your Medicare or insurance card and it gets billed directly to your carrier. Right now they are offering a free 30 minute consultation with the doctor to new patients.

    I would do my own research and possibly follow their recommendations for treatments if it made sense to me. I'd buy the supplements elsewhere for less though. The IVs were just a temporary solution. They are not a permanent fix but they may get you back to where you were before trying the MP.

    They do use things like lidocaine to dull muscle pain and also do a glutathione push at the end of the IVs. We are all probably deficient in glutathione as Rich Van K's research shows. That is another thing that made me feel very good -- all I could figure is they are doing something similar to the Myer's cocktail.

    Be advised that they won't tell you the ingredients in the IVs either. They will try to Hoover every last dollar out of your wallet and I do mean every last dollar. They have all sorts of sales tactics to get you to come back. I think they feed on hope. That's how they make their money.

    In my case, I did not agree with the FFC doctor's diagnosis of my underlying issues. They did uncover many many things (details are in my profile.) I wanted growth hormone, heparin for hypercoagulation and further Lyme treatment based on my lab tests. The FFC doctor thought I just needed a change in thyroid meds, food allergy avoidance and candida treatment. It was not that simple. If it was I'd have been cured 20 years ago.

    The FFC doctor sent me a two page letter outlining the reasons why I don't have Lyme disease. Yet I do remember having an EM rash right around the time that I was hospitalized for 3 weeks in neuro intensive care for sarcoidosis and some kind of tick paralysis or seizures.

    The FFCs also like to use one particular compounding pharmacy for their thyroid hormones. They do push that they are "bio identical" but all of the T3 used by compounding labs comes from the same place according to one of my doctors.

    I'd be certain the compounding pharmacy I use has standards and does some testing to ensure their products contain what they say is inside them. The same exact meds are available for less money than the one the FFCs sell.

    Please read this book to see photographic images of the bacteria associated with sarcoidosis,
    "Cell Wall Deficient Forms Stealth Pathogens" by Lida Mattman, PhD. I was able to get the book from the library on interlibrary loan because the book is rather expensive at $175. The author is a Nobel Prize Nominee and world renowned as the leading expert on cell wall deficient bacteria.

    Bacteria in Sarcoidosis and a Rationale for Antibiotic Therapy in this Disease:

    This is a very good discussion group sponsored by the Foundation for Sarcoidosis Research:

    If you have sarcoidosis like I do, I know that many on the FSR support group rave about the Cleveland Clinic. I recently saw a doc at Rush University in Chicago. She suggested Remicade infusions which is a Tumor Necrosis Factor Alpha or TNF-alpha blocker.

    I would basically have to jump through a bunch of hoops to get my insurance to pay for this medication which costs $19K - $22K per year wholesale. That's not including the cost for infusions and a mark up.

    I just jumped through all of my insurance companies hoops to successfully get them to pay for HGH or growth hormone therapy. After researching TNF-alpha blocker therapy, I decided that it's just not for me. One must undergo testing to determine if TB is a problem BEFORE beginning therapy.

    The biggest problem that I have with this class of meds is that I simply do not know what other infections are in my infection collection. From testing and symptoms, I do know that I have Lyme Borreliosis, Bartonella, Babesia, CPN, candida, EBV, in my infectious soup. Tossing another variable like Remicade would be unwise.

    I hope you find some answers and truly wish I could be of more help to you.
  11. SarcMP

    SarcMP New Member

    I was diagnosed in 2001 with sarcoidosis in my lungs. In 2002/2003 I came across the Marshall Protocol that was still figuring things out on what to take, and when. Example, at the beginning he suggested BactrimDS for phase 1 as well as starting out with Mino 50mg instead of the 25 mg that they now tell you to start with.

    I changed on my own, my eating habits. No whites at all. I.e., sugars, flours, starches.
    I ate mainly raw foods with some meats incorporated here and there as well as fish and eggs. I did a lot of supplementing with vitamins, C, B's, Co Enzyme Q-10. I did ALOT of fresh juicing.
    I had a contrast CT scan done on my lungs after 3 months of just changing my diet and nothing else and it showed a very slight improvement.

    Enter in the MP. I started taking 50 mg of Mino. NO BENICAR. I wasn't fully understanding everything, so I just took the Mino.
    3 months later, I had another contrast CT scan done, and it showed marked improvement in my lungs.
    I started the Benicar and now was up to 100 mg of Min that I took on Mon-Wed-Fri each week.
    3 months after that I had another CT with contrast. I had over 60% reduction in my Sarc nodules. I was feeling fantastic.

    So, for the next 4 years I took the Benicar but the Mino on and off since I was feeling fantastic.
    Also, according to the MP, even if you stop the Mino but keep taking the Benicar, you'll be okay as long as you avoid all D, etc. since the whatevers are slow growing.

    Last year and a half, I just stayed on the Benicar watched that I had no D in my diet at all.
    I started getting ill every 3 months with what I thought was a cold. I got VERY ill this past October and then realized it was my Sarcoidosis, and not the flu or cold.
    I had a CT done with contrast, and the Sarcoidosis had spread to my neck. So much for slow growing....
    As for their forums, if you complain or question anything, you're attacked by the MP cultists. If you ask a very important medical question like "I am having chest pains and thinking that maybe some other things are going on and need to see my doctor" They answer with, "Nah, you're probably herxing." Or they totally ignore you. I had for almost 4 months ask what the heck could possibly going on with me on why I was having these muscle twitches throughout my body, "Oh, you're herxing" was the staunch response.

    I had my doctor do blood work on me and my D was under 4. Muscle twitching is a direct result of RICKETTS.
    When asking them about this extremely low level of D I had was dangerous..NO REPLY. Sent an email to Aussie Barb and was told she couldn't help me and I had to read other people's experiences in regards to this. ??!!!
    They finally did respond..1 person who has been on the MP for about 6 months and is a "know-it-all" with the MP. scary...telling me I will DIE if I take vitamin D in my body.

    There is so much more now to all of this. They are now marketing their nurses sending emails to people they originally kicked off their "study site" due to lack of posting the 1x a week they wanted, to join up for a monthly rate and their nurses will answer all your questions.
    Puhleeease! These idiots avoided answering my serious questions when I was part of the study trial, what makes me think they will answer me this time???
    I am now eating all kinds of Salmon, eggs, etc, getting my arteries checked cause my EKG is now showing abnormalties.
    So, the conclusion I have is this. I am going back to the days I didn't understand crap and juice, avoid all whites, enjoy the sun outside if I wanted to, and take the Mino.
    I avoided the sun the days of taking the Mino. I was never one to lay out to sunbathe, so do not take me wrong here thinking I go outside for hours.
    I think the MP is dead on correct in regards to the bacteria and the Mino killing it.
    However, no focus on eating, diets, etc is discussed. Trust me on this. What you eat DOES matter. They also tell you not to take supplements of any kind. I will update with improvements with me or not in regards to changing and doing MY protocol how I originally had done.
  12. dkrolls

    dkrolls New Member

    3 topics: F&F Centers scam, MP, Guai Protocol
    Sorry I cannot name names in this post, since TM who developed the M Protocol for all Th1 inflammatory illnesses will sue me for libel.

    I know this is years late, but I do hope you were not taken in by the
    F & F Centers. They are a horrible scam perpetuated by a "Dr. T."
    He is on the staff at the Dr. Oz. show as of 2010. His bio can be found there and you will know him by his specialties including Fibro. He has never healed a single fibro as announced long ago by the doctor that bought his practice. He is simply a supplement seller and gets kickbacks from everything he agrees to mention in his speeches and he is making himself rich and is now rich enough to pay a doctor's malpractice insurance for those who agree to work in one of his clinics and push the supplements. So it's a great opportunity for a doctor to get rich quick at the expense of the fibros.
    Please just read the new 7th. Ed. of
    "What You Doctor May Not Tell You About Fibromyalgia"
    by R. Paul St. Amand M.D. & Claudia Mareck.
    This doc has a fibro protocol which is seldom taken seriously. My father was a drug chemist for WarnerLambert/Parke Davis and we had a good laugh at it too. It's that the pill you take is guaifenisen, i.e. Mucinex!
    Hilarious! So I decided to prove it all a scam and did it perfectly and even video-journaled a bit every day or so, so that I could go out and warn everyone about it.
    Then in month 4 my foot had to be surgically removed from my mouth as I got my first great day! It was a miracle!
    Then by month 8 I could jog 8 miles and I thought this is as good as it gets. Nope. My anxiety I'd had since birth vanished in month 9.

    WOW, I never knew how awesome life could be when you are not afraid anymore. They just all called me a very shy child.
    Nope I had anxiety my entire life and thought everyone did. Just like my Mom did.
    Dr. Amand has been practicing in Marina Del Rey, CA for over 40 years. As of 2012 he is still accepting new patients. He charges $400 but many insurances cover the expense now.
    The doc is now in his 70's and still works a full schedule.
    You do not need to meet him, but if you CAN swing it, they all say it is worth the trip him. I did not meet him. I did it with a little help from a doc that was trained by Dr. Amand and is right here in Chicago, where I live. So I'm very lucky.
    Just read the book, which you can read for free from your library. Be sure to get the latest one. It has a red band across the top.

    As of this post [Jan 2012] it can now be pre-ordered for a May delivery on Amazon. If it is way past 2012 then try Ebay, for a used one.
    As per MP. I'm very happy for those with Sarc who say they feel much better, but I've yet to hear of anyone being cured and off the meds. But that's still a lot for a Sarc. I'd be happy with that...not dying part!

    But as per fibro: well, there is not anyone yet who has reached anything close to a cure. TM is a salesman and an inventor and has applied his love of invention from Computer programming and mathematics and Electrical Engineering into this leap over into medicine.
    Hey, I'm open to all inventions. I like to invent stuff and I was darn good at it. So it's possible that he learned about a few areas of medicine and then learned by drilling deeper and deeper and deeper and not wider and wider, like a regular internist. Like some fibros know more about fibro and what works and why than a doc would.
    Yes, I got to stage III and yes it was the worst hell on earth for years. And eventually due to a simple misunderstanding on what my benicar dosage should be, my potassium spiked and my heart almost stopped, and I easily could've died on the floor in my kitchen. Well that was enough excitement for me and it took me 2 years to get back to a place where I could go through the Guaifenisen Protocol and reach remission again.
    As per the after effects from MP, yes I am damaged: the after images are retained on my retina for waaaay too long now, and the sun is not yet my friend. Plasma TV's are too bright for me. I have to have other lights on in the room or the after images become very distracting.
    None of these things are of much importance thus far, but who knows the possible long term damage I've done to myself.
    TM is an odd bird and his resume and list of credentials can be found on the web, as is a short paper of his life history and how far away from medicine it really is. He is an Electrical Engineer [not a Biological Engineer as he states in interviews] who was good at statistical analysis, and got onto a diabetes project to use his math skills to assist in insulin homeostasis something er other.
    TM is an inventor. A good one, perhaps. He did work with Macs for a time!
    I'm sure he searches the web monthly for the link to all negative items and then my post will be removed as he will claim liable, however nothing in the info is incorrect, so he can't do much but yell at Yahoo to take negative items down, and boy does he spend waaaay too much time going after anyone writing anything negative about him, his theories or the instructions for phases II, and III. He has to personally find out how you are doing and sends a long questionnaire before you can be approved to get the next set of instructions
    I was in it around (2008-ish ) and every month he "made a new breakthrough" And we all cheered him on!
    Here is the latest place for the info, if Mr. TM has not found it again:
    There are no cured fibros. You will be on benicar for the rest of your life and they sure don't tell you THAT up front, [hence the secrecy at each phase].
    How on earth could you get an Rx for this blood pressure med for the remainder of your life? Docs move, die and quit administering MP every day.
    We had only 1 doc in all of Chicago. He dropped all his MPer's cold turkey! I cannot even imagine what they went through getting cut off.
    There was 1 more doc an hour away who was on MP and had Sarc, but he too stopped administering it, so all of those in Chicago got dumped into one helova deep pit, with no meds to even help them get off the Benicar or to help slow the herxing. You just cannot stop MP whenever you want, like the Guaifenisen Protocol. MP withdrawals are so hellish and mine lasted for 2 years after I decided to try to get off of it.
    Sarcoidosis patients who are dying might as well try this as it seems to be the only thing out there for them. And they are much happier than the fibros on the group and often have good stories to tell. Not so with the fibros.
    As per you fibros, please wait until there is at least one proven case of remission where the patient was actually cured AND OFF OF the Benicar....always ask about the Benicar when you speak to his fans with fibro.
    The only info you will get from the website is positive. It will seduce you with all these wonderful sounding theories. All negative posts are deleted.
    -----------------------As per the logistics:
    There are not enough doctors to fall back on in the US if you DO find one and you get dropped you are gonna be in a world of hurt. The number of doctors administering MP is not growing. It is actually shrinking, as docs don't make enough money they tell me to make it worth all the work, and it's such a massive responsibility to monitor your Potassium levels so your heart does not stop. And since none of this is approved, the doctor is thus prescribing all your meds "off label" which the FDA is cracking down on. So it's only getting worse for those wanting to try it.
    JC Waterhouse is a fibro and says she did not have success on the Guai Protocol, and dedicated her life to Marshall's work.
    She [Joyce] always says she is getting better...but it's been since 2005ish for her, and I could've reached remission 3x over using the Guai Protocol in the time she's spent on MP.
    You can only imagine the costs. They are staggering. So many checkups: often twice a month and they charge a ton. And all the Rx's that have to be called in so often, which the doc can't charge for. So when one of my Doctors said he wanted to drop me since he was doing more work than it was worth to him, I had to make an agreement to come in every 2 weeks for a full hour's worth of time and sit and pick my nose, since I was simply there to help pay for all the little things a Doc has to do that he cannot charge for.

    It's just not worth risking your life if you have fibro. There were 2 known deaths when I was on MP. I can only imagine there must be many more, as it is way too easy to make a mistake with the Benicar, and your potassium can easily spike if you make one mistake and your heart will simply stop. And the autopsy would just show a potassium problem that lead to heart stoppage. It's not as though the words "M Protocol"-related death would ever find there way onto the report. So we will never know the real death toll.
    Try Dr. Amand's approach. It has worked for 40 years and is 100x easier than MP, it's infinitely safer, and tons cheaper.
    But do NOT go out and buy some guai and start taking it. YOU HAVE TO READ THE BOOK or you will buy the wrong guai, won't know how the titration process works, you will not know to avoid all Salicylates ["sals" block the guai for 12-24 hours and are to be eliminated in your body products. As are some foods, like anything with mint]
    When you see the word 'protocol,' you should know it is a program of multiple things you have to do and not do.
    It's NOT just going out and getting some plain old guai from a bin in the drugstore and taking it.
    This happens all to often:
    Dentists are now telling their fibro patients to "start using guaifenisen" since it removes tarter or considerably slows it's progression and you can avoid gum disease which is a very common symptom of fibro.
    So the patient goes out and gets the cheap, wrong guai, and takes it as the bottle states, and then gets so ill they toss the bottle out never knowing that had they just read the book they would know how to do the protocol properly and watch their fibro blow away forever.
    You need to know which "sals" to avoid and then there is a serious diet portion where all real sugar has to go bye-bye until you are VERY healthy, then you can cheat if you must. Yes it is a difficult protocol: imagine your fibro going backwards in time very fast. That is what it feels like and that is what it is actually doing.
    For every year you had fibro super bad you will have 2 months of discomfort prior to reaching remission. But what most of us say about it is
    "It never gets worse than your personal worst day sick with Fibro." Assuming you are doing it right with the proper guai at your proper dosage.

    Proper dosage is very tricky too, so you HAVE to join the GUAIGROUP [instructions in the book on how to join] This is where we all meet to ask all the questions we still have after reading the book. And you can track your progress against others with your similar background dates. You make tons of friends here, and they are the only ones who have been through all that you have been through and know you to your core. It is a very positive group in general, since everyone is getting better and better. As opposed to the fibro sites where it's just a list of how sick you are now and getting sicker every year which is just depressing. We are a group dedicated to actually reversing the effects of our condition, not just "what's the best heating pad?" Or have you tried Lyrica [Ha!] Lyrica. An anti-seizure "gaba" med that's been around forever and has 2 sister drugs made by other companies that do the same thing and have already been prescribed for Fibro for years. I'm glad for the ads since the general population will at least stop telling us it's all in our heads. But even today, doctors are still either taught nothing about Fibro or told to treat it as a waste-basket condition if you can't find anything wrong with the person.

    Most fibros are at least aware that they should be eating a low carb diet, as that is almost always the the first item on most websites about Fibro. But Dr. Amand takes an even stricter approach. In the book, there is a diet with lists of specific foods which are legal and not legal as many of us have: food sensitivities we never knew we had, or just a general carbohydrate intolerance, or even hypoglycemic symptoms that are so bad they actually mimmic fibro perfectly. So if you do not follow the diet and only take the pills properly, your fibro will be gone eventually, but you won't ever know it, since you did not take control over what you shoved in your pie hole! As time passes your diet is expanded one item at a time to be sure you can tolerate it. Many foods do not show their negative effects for hours, so you must limit it to one new food at a time until you are sure it is not making you sick. This is a non-profit clinic, they do not sell anything except the book, which you can get at your library. They run on donations and the Dr. dose charge $400 for a very long visit. They also get donations from companies like, who service Fibros on Guai exclusively. But you can get everything you need just as cheap as you are getting it today. You simply have to learn how to read the labels and what to look for to avoid.

    [This Message was Edited on 01/06/2012]
  13. spacee

    spacee Member

    I could not remember when I needed to wear sunglasses indoors....since the
    MP. I do have Sjogren's now too.

    I do have a friend from my MP days who had Sarc and she has recovered
    and would have died without the protocol. She 'knew' how to listen to her
    body and was very good at tweaking it. She was kicked off, I believe.

    Aussie Barb is doing better than she was but is no long on the MP.

    Seems some ppl it helps and others it doesn't and how do you know
    which one you are?

    I dislike "Dr. T" he used to go around holding seminars for docs on "how
    to make a lot of money....treating CFS patients and don't take insurance".
    And you have your weekend off because of no hospital calls. He has made
    a fortune off of us. Just my opinion, others may love him.

  14. Mikie

    Mikie Moderator

    I was also turned off by Dr. T's ads online for docs on how to make money off of sick FMS patients without having to take insurance. It's not illegal but, to me, it walks a fine ethical line.

    My docs and I achieved a lot emprically before the F and F Clinics came along. Everything we did was cutting edge. It is now the regimen at the FFC's. I did improve from what we did but it was no cure. It helped clean up some chronic stealth infections and got rid of my thick blood which was due to fibrin buildup.

    I also got some benefit from the methylation protocol. It helped with sleep and my infections which never really go away.

    The Guai Protocol worked so well for my that, at you know, I consider myself "reversed." That allowed me and my docs to pursue treatments for my CFIDS/ME and now the Sjogren's.

    The Red Tide left after our cool weather and I am again feeling well from my peptide injections. I will never use the "C" word (cure) but I am hoping to feel really well again. It's still too early to tell but the fact that the first two shots worked is a good sign. I couldn't tell until the RT left whether the second shot worked or not.

    I wish one of these treatment protocols would work for everyone. Even the peptide injections don't help 100 percent of the people with immune and auto-immune illnesses.

    I say if one can afford a treatment and the risk is not inordinatly high, why not. You never know what will help.

    Love, Mikie