Anyone done Dr Shoemaker protocol ?

Discussion in 'Fibromyalgia Main Forum' started by deepak, Apr 2, 2012.

  1. deepak

    deepak Member

    Just did the Visual Contrast Sensitivity Test at Dr Shoemakers site and tested positive for neurotoxins.

    Does anyone here have any experience with him or his treatment protocol.

    Thanks and love to all :).

  2. deepak

    deepak Member

  3. ParadoxBrown

    ParadoxBrown New Member

    Yes, his work is pivotal in understanding CFS and Fibro, would highly recommend. Also would mention Diatomaceous Earth or Bentonite Clay work for detox, as an alternative to Cholestyramine.


  4. deepak

    deepak Member


    did you do Cholestyramine. and if so what dose and frequency ?

  5. Forebearance

    Forebearance Member

    Hi Deepak,

    Yes! I did the VCS test, like you did. Then I did a bunch of his blood tests, including the genetic test. He uses those to diagnose people. My regular doctor was willing to order them.

    The results clearly pointed toward me having mold poisoning. So I started with cholestyramine, but it turned out to be too strong for me. So I've been taking soluble fiber instead, which is much more gentle.

    Phytosterols are gentler than cholestyramine, but stronger than soluble fiber.

    I'm still working on detoxing, all these years later. I haven't moved on to the next stages of his protocol.

    I know other people with CFS who have been helped quite a bit by his protocol. But I don't know of anyone with CFS who has been completely cured by it. I think maybe we are more complicated than his patients with straightforward CIRS. (Chronic Inflammatory Response Syndrome)

    Try searching past threads and you'll find lots of discussion of it.

  6. deepak

    deepak Member

    I do take Cholestryamine too as I get it OTC in india- though its yucky to have and makes you feel so full - but I do notice - the day I take it my vision seems sharper.

    What dose of CSM were you on ? Did you notice any benefit from it.

    Also can you tell me which soluble fibre are you taking ?

  7. Forebearance

    Forebearance Member

    Hi Deepak,

    I was taking a very small amount of cholestyramine.
    It made me feel better -- less poisoned, less inflamed -- very soon after I took it. But I usually react quickly and strongly to things I take.
    Even though it made me feel so good, it also made my teeth feel weak. So I was afraid of getting cavities and I switched to something less powerful.

    I've been taking Benefiber for years now. This summer they had a quality control problem at the factory and pulled it off store shelves for a while. Hopefully it will be back in stores soon.

  8. lesliesue

    lesliesue New Member

    Hi Deepak and Forbearance, and everyone,

    I was on Shoemaker's protocol. The cholestyramine made me very sick. I have post Lyme syndrome and perhaps an active Lyme infection. Dr. Shoemaker said that from what he has seen most cholestyramine intolerances come from Lyme. The tests were inconclusive as to whether the Lyme is still active or not. I went on Welchol, which is milder than the cholestyramine and it works much better for me. I know this will take a very long time....and I don't think I will ever be 100%, but I am feeling better. Sometimes a lot better and sometimes not so much. I have mold sensitivities, too, by the way. Positive genetic tests. My C4a has improved.

    I wanted to mention that my VCS test can change rapidly and from negative in one eye to positive in both, etc. Exposure to mold could do that, but I believe there are various reasons for it. Deepak, do you mind me asking if mold is your problem? I am curious how you found the VCS test and Shoemaker.

    Forbearance, if you don't mind, I'd love to hear more of your story.....maybe I need to read more threads.

    My husband also has mold sensitivity and the cholestyramine works well for him. It has cleared up some of his symptoms. But if he goes off he feels worse. He has taken it for probably 9 months. Starting at 4 times a day....and he dialed it back to two after about 6 months. It is hard to take! Especially having to have an empty stomach.

    Sorry this is so long! I'll stop rather than running on, but if you have any questions I'd be happy to help.

  9. Forebearance

    Forebearance Member

    Hi lesliesue!

    Did you actually go to see Dr. Shoemaker? He is such a mixed bag. On the one hand, he is brilliant to have figured out how to tell if people are being poisoned by biological neurotoxins. On the other hand, his bedside manner has a reputation for being pretty bad. I know people that he made cry, for example!

    I think the best method is to see a different doctor who knows his protocol and has a nicer personality. I was lucky in that when the test results came back, it was obvious that I was being poisoned by mold toxins. If it wasn't clear which poison was the problem, a person might have to go see him to get diagnosed properly.

    I've heard of Dr. S putting his Lyme patients on Actos. But now that drug is considered dangerous, isn't it? Have you ever tried PGX? It's a supplement with soluble fiber from the konjak root. (I might not be spelling that correctly) It prevents insulin spikes, which is one thing Actos does.

    For a while, I was looking for natural alternatives to Actos.

    Yes, I understand what you mean about the VCS test. If I walk into a building with a mold issue, my eyesight can get blurry quickly.

    Even working on this dumb computer that I'm on right now is making my eyesight get blurry. Sigh.

    I'm sorry to hear that you and your husband have to go through this unpleasant health stuff. But I'm so glad that you have found things that help!

    My story in a nutshell is that I spent 18 years just being a typical ME/CFS patient. Then I read Dr. Shoemaker's book and it sounded like he was describing my symptoms, so I decided to look into it.

    On looking into it, it did look like mold toxins were an issue for me. I was gradually getting better for years, but then the apartment I was living in flooded a few times. My health seemed to plateau and then gradually decline.

    I snipped some fibers from a spot on my living room carpet and sent them in to Mouldworks. Sure enough, many kinds of toxin producing molds and bacteria were in my carpet.

    So I did Dr. S's tests. Next I could have moved out of my half-basement apartment. But instead I decided to try something more extreme -- I moved and put all my stuff in storage and started over with all new stuff.

    That made me feel a lot better, but it also made my immune system super touchy about being around mold toxins. So it's been a mixed blessing.

    I've been writing journal-type threads on this board for years. If you want to read all the details, the threads are called "CFS: Forebearance's thread".

  10. lesliesue

    lesliesue New Member

    I feel so lucky to have met you! And find this site. A lot of what people write here sounds very, very familiar.

    Yep, I did go see Dr. S. Twice. My husband did, too. We have had a couple phone consults, too. With my experience fresh in my mind I agree wholeheartedly with you. Find another doctor that will do Dr. S's protocol. Someone who is nice. He can be nice...but you really don't know what you are going to get on a given day. That is so sad that he made people cry. Like we need that when we are so sick. But I can completely imagine it happening. There is also a member of his small staff that is a little scary.

    But you are also right when you say he is brilliant. I have thought about this situation so much....and it really seems he should stick to the research and not have patients. Honestly though, I think he needs us to help fund his research. A very tangled web, I think. I am frustrated right gets to the point where a patient is afraid to call the office. Walking on eggshells. Ok....I'll stop now. ; )

    Oh, yes....I was on Actos for ten days, I think. It is hard to say if it helped. I think I had more energy....but felt dizzy and bloated. When the time was up I was relieved to go off it. It is suppose to be dangerous.....but maybe that is long term? I don't know. I haven't tried PGX.....interesting. I'd prefer to do whatever I can naturally (after years of being on drugs that have messed me up).

    Yes, my eyesight is blurry right now. Some days it is fine....great even. It is all the symptoms in a big overwhelming wham! Or feeling good, clear-headed, relatively pain free with energy. But those days don't happen as often as I would like. And sometimes rarely.

    Is your stuff still in storage? I think you probably did the right thing....but it must have been hard! We have a pod in our driveway. I'd love to clear it out, but cleaning the house has taken all year.....and we are not done. We threw out all the rugs and some furniture. We are going room to room cleaning everything. Sometimes I feel like we should have bailed in the beginning.....but now we have sunk so much money into the house. I hope this works. It is a lot better! So that is good.

    So you are more sensitive to mold since you have been in a cleaner environment? Any thoughts on that? It would explain a thing or two. Maybe for me it is just the awareness, but if I get in a moldy situation it hits me like a ton of bricks. Maybe I just know what it is now?! I have also been juicing. I seem to be much more sensitive to trigger foods. Interesting!

    Deepak, thanks so much for starting this thread. I have been wanting to discuss some of this stuff....but haven't really known where.

    Forebearance, I will check out some of your threads. Take care.

  11. Forebearance

    Forebearance Member

    I'm so happy to have met you too, LS.

    Yes, my stuff is still in storage. I probably won't be able to get it out until I am a lot better, health-wise. It was easier for me to move, because I was just renting and my lease was ending anyway.

    Yes, I'm a lot more sensitive to mold toxins. And to chemicals, including regular old non-toxic mold. Yeah, it hits me like a ton of bricks, too, to be around mold toxins. I try to avoid them as much as possible.

    Because of my decisions, I'm in a situation now where I'm having a hard time finding a place to live. But because of spending more time in places with better quality outside air, it has been good for my health.

    I'm so glad that cleaning out your house seems to be helping!

    You didn't say if you have ME/CFS or Fibromyalgia. Would I be correct in assuming that you have been diagnosed with one of these things?

    Deepak, I hope I didn't scare you off by talking so much on your thread!

  12. deepak

    deepak Member

    Hi lesliesue and Forbearance,

    No forbearance, you did not scare me off :). We are all here to learn from each other :).

    Lesliesue, I got to know of VCS test and shoemaker from online research as I have been having lyme/parasite/FM kind of symptoms since 2 years and am trying to figure out what is going on. Being in India does not make it easy as I do not have access to many of the testings that are avl in USA. But I am doing the best I can learning from the wonderfully helpful people in groups such as this one.

    I have gone vegan since 2 months and have minimal to no oil meals - that has helped me A LOT. I was not able to lose 1/2 a pound for 2 years and now in the last 2 months of going vegan I have lost 25 pounds. Supposedly veganism is very very good for autoimmune kind of symptoms.

    I am also taking LDN since 5 months and again I think this helps a lot in the AI kind of symptoms and in fatigue, cognition and pain.

    Lauricidin is another supplement I am taking since 4 months. It is a natural anti viral ( esp good for herpes familiy viruses ) and antibacterial.

    Other things I take are magnesium, Vitamin K2 , Vitamin D, Serrapeptase, nattokinase and Liv 52 for liver support......I think the liv 52 helped me a lot and reduced my bloating issues considerably.

    The only test that I have positive is EBV - I read EBV can attack the adrenalins and thyroid - so I am planning to take adrenanlin and thyroid support since I have been having hypothyroid symptoms - I am going to give a try to this product called thytrophin by Standard Process Labs. It seems to be a good product to try if one is not sure if one may be hypothyroid ( blood tests come out normal but i read they can be very unreliable).

    Regarding mold ( finally ;-) ) - well, I do not know if I have mold issues inside my body - in india, where I stay- near the sea- nearly every house has some fungal/mold issues. I do not have testing facility here so I was doing the CSM thing on my own. I was taking it just 2 times a day ( its so HORRIBLE to take ) but from your posts I think the dosing should be higher. I am lucky that in India I can get most any medicines over the counter , without a RX - so I can experiment and do stuff on my own even if some idiot doctor thinks I am "absolutely fine".

    Could you please share more on your mold symptoms were and what dosing and medicines and duration Dr S tell you to take them ? I could maybe just mirror that. Also, what is Actos given for ? Is it a must to have with CSM ? Are your symptoms much better now ?

    Good luck and prayers for us all :)

    With love,

  13. lesliesue

    lesliesue New Member

    Yes, Forebearance, to answer your question, I've been diagnosed with all of the above. I always thought it started with Lyme disease, but realize I have probably been mold sensitive my whole life. Got the genes for it!

    We really went back and forth about cleaning the house....but one of the things that helped us decide is when we realized that almost every place we've ever lived had water damage. So I understand what you are saying.....I think finding a place to live would be very difficult. As it sounds like it would be hard for you, too, Deepak.

    Deepak, I had Lyme for about 13 years before I was diagnosed, and even then it was more of a clinical diagnoses. My Dr. at the time believed the test was positive. But there is so much controversy and most doctors would (and have) said it isn't positive enough. It isn't proof. I know I was bitten twice.....but it took the diagnoses for me to backtrack and remember. I had thought I had the flu. So to get to the point, even with the testing we have here, you might not get an accurate diagnoses. You have probably read that before.

    Diet is so important! And I applaud you for figuring that out so quickly. I was always hoping for a magic pill. Some treatment to cure me. Maybe some treatments have helped, but I think diet is one of the most important things. And I really didn't get on the extremely healthy diet wagon until a few months ago.....I was so sick I needed to do something drastic. Exercise helps, too, but that can be hard to manage for us. Oh....and the weight loss happened for me, too. I thought I was eating healthily, but it was too much dairy. I understand! I could not lose a 1/2 pound either. I am down 15......10 more would be great.

    Interesting about the EBV....I tested for: was positive at some point. Several years ago I had thyroid problems and my adrenals were practically non-functioning. I think it is a great idea to support those with supplements. Although too many supplements can get so difficult! I just ordered some Olive Leaf Extract. Has anyone here taken that? It sounds good. An antibacterial, anti fungal....other things too, but I have a lot of brain fog right now. Can't remember the list.

    Ok...CSM and mold. I know it is horrible to take. If you start feeling really sick try what Forebearance mentioned or Welchol if you can get it. My husband does fine on CSM, for me it kicked up all the symptoms. It was truly terrible. The symptoms for mold sensitivity overlap many illnesses. It makes it so difficult. So for me the Lyme symptoms and mold symptoms are almost interchangeable. I will find my symptom list from Dr. S and put them up here. Off the top of my head (because I live with them) fatigue, brain fog, concentration problems....lots of brain trouble like that, fibro, CFS, pain....random roving pain, IBS, nausea. My husband got terrible headaches. Tissue that doesn't heal. I'll get the list and maybe start a new thread....or put it here.

    Taking CSM: 4 times a day. One scoop (if you want I can try to find something more exact than that). Stir it into about 4 oz.'s of water. You should take it one 1/2 hour before eating or 2 hours after. So it really is difficult. You can take Welchol with food....but it isn't as strong as CSM. Dr. S didn't put me on Actos until I basically failed with the no, you don't need it. My husband was never on it. I would skip that part, at least for now. The only other thing Dr. S told me to take was Omega 3....dha/epa. In strong amounts as an anti-inflammatory. I'll get you the dosing on that, was on the high end (like 700 to 1000mg-but I will find my notes and clarify).

    If you have any other questions or I missed something please ask. I had a hard time finding much about his protocol on the web.....and his books can be intense. Hard to pick out what you need to do.

    Until I find my notes, I hope you both (all, anyone reading) has a healthy day!

  14. Forebearance

    Forebearance Member

    Hi you guys!

    Hey, deepak, I also take Lauricidin and I love it. It is supposed to kill retroviruses as well, so if we have any of those I'm hoping it works to get rid of them.

    I take Thytrophin every morning and I love that, too. My body has a hard time turning T4 into T3, and the pills have just T3, T2, and T1 in them. So it gives me an extra boost. I think it is a good thing to experiment with.

    Lesliesue, I understand what you mean about being mold sensitive your whole life. Looking back, I can see that there were places or buildings where I didn't feel very good and never knew why. Like my high school! lol

    I wish you all the best in getting your house habitable again!

  15. Forebearance

    Forebearance Member

    Hey, maybe you guys would enjoy Joey's recent blog post: