Side Effects to Dr. Shoemaker's Protocol?

Discussion in 'Fibromyalgia Main Forum' started by RobynK, Sep 16, 2004.

  1. RobynK

    RobynK New Member

    I have read Dr. Shoemaker's book, Desperation Medicine, and have contacted his office to try and determine what, if any, side effects arise w/his protocol of I believe CSM?

    His office told me constipation and acid reflux seemed to be the worse side effects yet when I contacted an area Dr., who was on Dr. Shoemaker's referral list, he said when he tried the protocol on 8-10 patients they all got so sick they could not or would not continue with the treatments.

    Needless to say my heart sunk, because as much as I am trying to accept there is no cure for CFS, Dr. Shoemaker's theory and protocol sound so promising.

    I have had CFS for nearly 3 years now, and am progressively declining. I believe it was brought on by toxic mold in an office building. Upon reading some posts on chronic neurotoxins tonight I see that some (particularly affected by toxic mold) have been helped with Dr. Shoemaker's protocol. Since I have developed severe allergies/chemical sensitivities w/CFS and cannot tolerate so much as Tylenol, I would like to know as much as possible about any side effects before I invest precious money with Dr. Shoemaker.

    To that end I would most appreciate any feedback on any side effects anyone has had on his treatment.

    Thanks, to any and all of you for your past posts and hopefully new replies ----


    <br>[<i>This Message was Edited on 09/18/2004</i>]
  2. helpeachother

    helpeachother New Member

    Hi RobinK, I am on Dr Shoemaker's protocol through my CFS/FM doctor. My stuff all started with Lyme Disease years ago and now to CFS/FM/ severe MCS, etc etc.

    The first time I tried the questran (this is the basis of his suggested treatment). I had a bad reaction to it because the Questran "Light" (sugar free) has phenalyines (SP?) in it which I reacted to.

    The second time, I used the regular (generic) Questran powder and mixed it with metamucil (so the severe constipation wouldnt occur).

    I still had bad reactions, and was told that the Lyme symptoms hurting me again. so Before i started the third time, I ran a 10 day course of Actos in order to eliminate this problem.

    Now, I am taking this Questran powder with the metamucil powder and have no bad effects. I am hoping for some good de-toxing to lessen the MCS very bad symptoms.

    Have you tried (over the counter) GABA? I take a few (solgar) every day and prn when i am hit with perfume or diesel fumes or other neurotoxins. It helps me, but I am very sensitive to meds. Good Luck. Peace

  3. RobynK

    RobynK New Member

    Thanks much for the response.

    Would you enlighten me as to:
    - How bad was your reaction to Questran light? I.e., vomiting, headache, diarrhea, vertigo, etc.?
    - What is Actos? How long have you been on it?
    - And what is GABA?

    As you can tell, I have no knowledge or experience with any of these things but am willing to learn about and investigate them. Everything I have taken to-date has been natural --- I have improved in some areas (sleeping/waking at 2-4 hr intervals rather than 1/2, and able to eat more foods) but have declined in other areas (brain fog, concentration, confusion, adrenal weakness).

    While I am waiting for confirmation that I do not have Lyme, I do believe my CFS resulted from toxic mold exposure. It seems Dr. Shoemaker's protocol is geared for those affected with Lyme, mold, etc., and I am seriously considering trying it. The fact you have MCS and didn't give up after a couple of bad reactions says a lot. How long have you been on the treatment altogether and have you noticed any improvements?

    'Look forward to your reply. Thank you.
  4. CANSADO

    CANSADO Member

    Hi,

    I have been on Dr. Shoemaker's protocol for about six months. I am using pure Cholestyramine from Hopkinton Drug in MA. I use Psyllium caps from ProHealth to keep things moving through my system. I do get a little acid reflux now and then, but not much. The biggest problem is taking it 4 times a day. Any other meds have to be timed so that they are not "washed away" by the drug. Dr. Shoemaker's website has a lot of info. You should look at the website then call his office and run some of your questions by someone at his office.
  5. RobynK

    RobynK New Member

    I have read through his website, although with the brainfog I can't say how much I actually retain. I have contacted his office and the biggest side effects they told me about were constipation and acid reflux.

    It is when I contacted the local dr. who said he tried the protocol on 8-10 patients who were so sick they would not continue it, that has made me think there must be much worse side effects than the ones his office or you have mentioned. That is why I am asking anyone who is actually on the protocol for their personal experience. I.e.:

    How long have they been on the protocol, do they feel any improvement and if so, how? What are their side effects and/or issues with the protocol? What gave them their CFS to begin with, i.e., Lyme, toxic mold, etc.

    At this point, I would also like to hear of patients personal experience with Dr. Shoemaker. Not being ill until CFS came into my life, my recent experiences with the medical community are less than rewarding.

    I have found that some of the practitioners whose books I have read --- which contain a lot of hoopla of how wonderful their treatment is and how caring and attentive to detail they are --- are more of a marketing ploy as in actuality they are rushed, do not want or have time to answer questions, and do not use the treatment purported in their books and materials. How does Dr. Shoemaker fair in that area?

    Thanks much.....I look forward to learning more personal stories.

  6. CANSADO

    CANSADO Member

    Hi,
    If you think you have a mold problem, you should seriously consider Dr. Shoemaker. The Cholestyramine has not helped me yet, but that might be due to a staph problem in my sinuses, which can hinder recovery. I believe that, for example, the people on this message board probably have a few or more different kinds of illnesses, and accordingly will not respond to some treatments. Dr. Shoemaker's work deals with toxins. Other problems are viral, bacterial, even "mechanical" (Chiari malformation). We have to make a best guess as to what to pursue first. Personally, I think I have chronic Lyme, and/or a mold problem. My first contact with Dr. Shoemaker was an office appointment. The rest of the appointments have been phone consults, as I am about 10 hours away. He cares about his patients and answers their questions. If you are worried about the expense, you might consider asking your GP for a one month scrip for the "pure" cholestyramine to see if you would be able to tolerate it. The side benefit I have seen, of course, is a lowering of my cholesterol!
  7. foxglove9922

    foxglove9922 New Member

    I believe my CFS started with mold as well.

    Could someone briefly explain his protocol and success ratio. Thanks, Debi
    <br>[<i>This Message was Edited on 09/22/2004</i>]
  8. CANSADO

    CANSADO Member

    Hi,
    I don't know Dr. Shoemaker's success rate, but you can find out about his protocol at his chronic neurotoxins website. There are posts of his on a dormant Yahoo group called stealth virus. His book Desperation Medicine describes his protocol, but it is a couple of years old, and he has learned a more about toxin illness and it's treatment since then.
  9. helpeachother

    helpeachother New Member

    Hi Robyn, you asked above

    "Would you enlighten me as to:
    1- How bad was your reaction to Questran light? I.e., vomiting, headache, diarrhea, vertigo, etc.?
    2- What is Actos? How long have you been on it?
    3- And what is GABA?"

    All from my own experiences:
    1-The questran LIGHT basically gave me bad headaches, a feeling like general systemic allergic reaction (swelling, tight chest) cant remember more from this sorry, bbut it was bad enough for me to stop, and i am one to try to plod through anything if i think it will help. )Please remember i think this was just the phenalyline reaction, since I bacame accustomed to the "regular" questran powder has a little sugar instead of this artificial sweetner.)

    2-Actos is a prescription drug that is usually used to control blood sugar in diabetics. The Shoemaker protocol indicates that taking a ten day course of Actos PRIOR to starting the questran is to stop Lyme Disease symptoms from affecting you while you are subsequently taking the questran

    3-GABA is really neat. It is an OTC (over the counter)supplement (i use solgar) and it works in the body in a similar way to neurontin, only it seems much milder. My doc told me to take it to relieve Chemical Sensitivites reactions. (Got MCS after CFS, FM, all started from Lyme Disease which went undiagnosed for quite awhile.

    Good luck and be well. Peace.
  10. RobynK

    RobynK New Member

    Has anyone here actually had any improvement in their CFS symptoms from Dr. Shoemaker's protocol? If so, what and how long did it take?

    I am glad to hear Dr. Shoemaker takes the time to answer questions and really cares about his patients. My experience with the medical community thus far has been very discouraging as they either don't know what's wrong, or don't take time to explain what is happening to me....

    I too, live a rather long distance from Dr. Shoemaker. With my increasing confusion and memory lapses I am concerned about making the long drive. Therefore, I appreciate as many candid responses as possible before I make the leap.

    Thanks to all again. Your information is very much appreciated and valued.
    <br>[<i>This Message was Edited on 09/27/2004</i>]
  11. RobynK

    RobynK New Member

    Has anyone here actually had any improvement in their CFS symptoms from Dr. Shoemaker's protocol? If so, what and how long did it take?

    I am glad to hear Dr. Shoemaker takes the time to answer questions and really cares about his patients. My experience with the medical community thus far has been very discouraging as they either don't know what's wrong, or don't take time to explain what is happening to me....

    I too, live a rather long distance from Dr. Shoemaker. With my increasing confusion and memory lapses I am concerned about making the long drive. Therefore, I appreciate as many candid responses as possible before I make the leap.

    Thanks to all again. Your information is very much appreciated and valued.
    <br>[<i>This Message was Edited on 09/27/2004</i>]
  12. RobynK

    RobynK New Member

    So, has GABA reduced the reactions of MCS? My sensitivies have heightened recently and this might be something I need to look at.

    Thanks for your info.
  13. RobynK

    RobynK New Member

    So, has GABA reduced the reactions of MCS? My sensitivies have heightened recently and this might be something I need to look at.

    Thanks for your info.
  14. Jasmine

    Jasmine New Member

    I am really impressed by Dr. Shoemaker's protocol since my CFS started with mold exposure in my house and started with breathing problems. I read on this site here that beta sitosterol is a naturopathic substitute similar to Dr. Shoemaker's cholestrol drug. So I take the beta sitosterol brand Natrol for 3 weeks on and off for several months. The only improvement I have noticed is that my breathing is much better now. I got severe constipation from the recommended 4 tablets a day so I can only take one half of a tablet a day so maybe that's why I have only had a minor improvement. The tablets only cost $7 a bottle.

    Love, Jasmine
  15. Jasmine

    Jasmine New Member

    I am really impressed by Dr. Shoemaker's protocol since my CFS started with mold exposure in my house and started with breathing problems. I read on this site here that beta sitosterol is a naturopathic substitute similar to Dr. Shoemaker's cholestrol drug. So I take the beta sitosterol brand Natrol for 3 weeks on and off for several months. The only improvement I have noticed is that my breathing is much better now. I got severe constipation from the recommended 4 tablets a day so I can only take one half of a tablet a day so maybe that's why I have only had a minor improvement. The tablets only cost $7 a bottle.

    Love, Jasmine
  16. helpeachother

    helpeachother New Member

    Hi Robyn, I guess the short answer is (for me) yes, GABA has reduced the intensity of each "attack" or reaction to a chemical toxin.

    Its not a cure and it doesnt eliminate the suffering from every exposure, but for me it does most certainly lessen the severity of some or most of the reactions.

    My doc says to take it 4x a day but it might make you just a little sleepy, but if Im going somewhere where I know what's coming, i'll do a pre-pill, or if a diesel truck surprises me, it will be a "Help!' pill. Or if some rude person comes into my house with perfume on, i might have to go for a second pill shortly thereafter.

    Its really worth a try, since its so cheap and available (i have only used solgar brand). I'd be stuck without it as one of my arsenal! Hope it helps, Good Luck. Peace.
  17. helpeachother

    helpeachother New Member

    Hi Robyn, I guess the short answer is (for me) yes, GABA has reduced the intensity of each "attack" or reaction to a chemical toxin.

    Its not a cure and it doesnt eliminate the suffering from every exposure, but for me it does most certainly lessen the severity of some or most of the reactions.

    My doc says to take it 4x a day but it might make you just a little sleepy, but if Im going somewhere where I know what's coming, i'll do a pre-pill, or if a diesel truck surprises me, it will be a "Help!' pill. Or if some rude person comes into my house with perfume on, i might have to go for a second pill shortly thereafter.

    Its really worth a try, since its so cheap and available (i have only used solgar brand). I'd be stuck without it as one of my arsenal! Hope it helps, Good Luck. Peace.
  18. jamescoury

    jamescoury New Member

    I was treated by Dr. Shoemaker in 2009 with Cholestyramine.&lt;BR&gt;
    &lt;BR&gt;
    My side effects were digestive distress, loss of health insurance from excessive labs, and then homelessness.&lt;BR&gt;
    &lt;BR&gt;
    Dr. Shoemaker is biased to prove his pathway. He had me dead convinced it was mold, and 2 years later I tested positive for Bartonella (a Lyme co-infection.)&lt;BR&gt;
    &lt;BR&gt;
    From the Cholestyramine I didn't have any major side effects except for digestive distress. The problem is that I got better at first, and now I'm far worse than before I saw him. I will say his treatment may have helped me if he hadn't bailed on me.&lt;BR&gt;
    &lt;BR&gt;
    Dr. Shoemaker's office got overwhelmed with patients and he never hired more than his 2 staff. The nurse would answer phones and then have to put it down to continue helping a patient. I think this issue still exists.&lt;BR&gt;
    &lt;BR&gt;
    I was blacklisted by his office because Debbie the office manager has good and bad days.&lt;BR&gt;
    &lt;BR&gt;
    After getting stuck half way through treatment because the office ignored follow ups for nearly a year, my insurance cancelled me from the excessive labs he draws every month for research purposes. He will tell you it is to monitor progress which I'm sure has some truth, but the real thing he is after is data to prove his biotoxin pathway.&lt;BR&gt;
    &lt;BR&gt;
    After losing my health insurance, Dr. Shoemaker refused to communicate with me. What a nice way to deal with his own accountability.&lt;BR&gt;
    &lt;BR&gt;
    I've always maintained a positive attitude through all of this. I have heard him on the phone say things that are very hateful and resentful towards patients. To him, it seems like he would just rather do research and the patients get in the way with all of their questions.&lt;BR&gt;
    &lt;BR&gt;
    You can detect this arrogant resentful attitude in all of his books, his patient info packets, and everything he puts out. He is a negative soul that needs some healing of his own before he can actually help people.&lt;BR&gt;