1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

I am booked in to see Prof. de Meirleir in January

Discussion in 'ME/CFS Doctors' started by snowathlete, Nov 27, 2012.

  1. abporter

    abporter

    Messages:
    41
    Likes:
    8
    Austin, TX
    I just watched this Shoemaker video on treating Borrelia and detoxifying neurotoxins:
    http://www.betterhealthguy.com/dr-ritchie-shoemaker-video-on-lyme
    It seems to make sense to detoxify neurotoxins while doing antibiotics and thus perhaps reduce a herxheimer reaction.

    However while researching, I saw this, which basically says all this is nonsense:
    Excerpt:
    "Until the existence of Lyme neurotoxins is proven (it shouldn’t be so hard to find them in a culture broth), we should not risk what remains of our health and spend time, effort and money on trying to “detox” them, because the “detoxifiers” and “toxin binders” such as Cholestyramine (Questran) have never proven their value in any randomized, double-blind, placebo-controlled, peer-reviewed, reproducible trial but they do have very serious potential side effects, including cancer. Those binders bind important nutrients as well, weakening the immune system. “Detoxing” (AKA the ethereal “body cleansing”) distracts from the real issue: How to kill the Lyme spirochetes more effectively and how to prevent an extreme immune response to the Bb bacteria/dieoff damaging our tissues."
    http://owndoc.com/lyme/lyme-neurotoxin-detoxing-nonsense/

    Since I'm about to start treatment for Gram Negative Bacteria, I'm wondering where people who have researched this stand and/or if anyone has had experience taking Cholestyramine and antibiotics for Borrelia or co-infections and their experience.
  2. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,759
    UK
    @abporter
    very interesting link about neurotoxins.
  3. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    Hi ab - I've probably said this elsewhere, but I was on Questran and all kinds of abx for borrelia and other infections for several years, including IV ceftriaxone for 12 weeks. They had no effect at all, good or bad.

    Good luck!
    abporter likes this.
  4. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,759
    UK
    @Jenny
    have you tried any of the herbal protocols?
  5. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    Hi maryb - I tried resveratol (sp?) for a while - didn't do anything. Also samento for about 6 months - had to work up very slowly as hard to tolerate, but it didn't help.

    At the moment I'm on Chinese herbs and having regular acupuncture. I'll post about my experience on this treatment in a few months.

    (In my case, I don't have much faith in the borrelia etc diagnoses, I'm afraid.)
  6. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,759
    UK
    @Jenny
    I tried Samento as well, it caused neuro effects quite quickly, I understand now:( that you have to go up at a drop a week. Also have to take Burbur with it as an anti-inflammatory, I have a protocol for Samento, Banderol, Burbur if you are interested. Hope you're having success with the Chinese herbs though.
    If you are well enough can you say why you don't have much faith in the borrelia diagnoses? I've just recently been diagnosed and its turned me upside down really. But I have to say all my symptoms point to it, I also think mine has turned into neurolyme.

    What I have read recently about Lyme is that if the a/biotics are used incorrectly the borrelia become resistant to them. Its a minefield...
  7. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    Hi maryb - I first looked into the Lyme etc issue about 8 years ago. I had numerous tests from various doctors - some were positive, some negative; some indicated borrelia, some other infections. One place I went to was the Breakspear and I felt in the end that the doctor I saw there just didn't know what he was talking about. He didn't know how to interpret the different test results and told me conflicting things from one visit to the other. They use different tests I had now (they seem to use some for a while then abandon them) but I've never seen any evidence for the validity of any tests they use.

    I've been in touch with quite a few people who did abx treatments and have never heard of anyone with my cluster of symptoms who improved. Those who did improve tended to have had an obvious tick bite and severe acute pain and neuro symptoms. They seemed to have less exhaustion than people diagnosed with ME. I never had any evidence of a bite and my main symptoms right from the start were feeling like I had never-ending flu, and severe weakness. Like many, at my worst I have only been able to walk a few steps. Perhaps unusually, I've never had many cognitive difficulties.
  8. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,759
    UK
    @Jenny
    Thanks for replying, sorry your experience with B/spear was so poor. I don't know whether the newer testing is better?
    I've just had the epitope test on band 31kda which is supposed to have a 98% certainty.
    My doc suggested this after some bands on my first tests were IND, band 58 was positive which they said is linked to Scottish ticks - I've been to many a dog show in Edinburgh at the agricultural ground there, and stayed with friends up there every year. Never remember specifically being bitten by a tick but was always getting bitten by something whilst out walking or riding over a number of years.

    Yes your symptoms don't sound like mine but we have the same diagnosis via the NHS - morons.....

    I have horrendous head pressure and very sore foot soles at present, absolute and utter fatigue - the slightest exertion and my body is drenched in sweat, also without exertion, sometimes every hour then a couple of times a day.....No pattern. Allergies and severe food/supplement intolerances, limited diet and so on.

    Be interesting to hear about the Chinese herbals after your trial.
  9. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    I've had the head pressure, but thankfully not very severe and not for some time. Also, like you, sore soles occasionally! I don't seem to have any allergies and apart from the samento never had any problems with tolerating any supplements or medications. I do get quite a lot of gastro symptoms which only improved since I found I was lactose intolerant and avoided normal milk. I still get some bloating and indigestion though especially when in a bad patch. After 30 years of experimenting with diet, apart from lactose I've never been able to identify any food that makes things worse.
  10. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,759
    UK
    @Jenny
    Sore shins as well!! oh and I forgot the constant veritgo and dizziness:) :)
    it certainly is a strange illness that has us chasing out tails. But one thing for sure is doing nothing is not an option.
    minkeygirl and Jenny like this.
  11. November Girl

    November Girl Senior Member

    Messages:
    301
    Likes:
    126
    Texas
    Valentijn likes this.

See more popular forum discussions.

Share This Page