Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Has anyone tried Dr Ty Vincent's Coxsackie B4 LDI antigen for CFS/ME?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, Sep 2, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,726
    Likes:
    4,350
    Southern California
    LDI (Low dose immunotherapy pioneered by Dr Ty Vincent) is a relatively new treatment modality that uses deactivated antigens (derived from various pathogens and toxins) to rebalance dysfunctional immune systems.

    Although the science behind LDI is unproven and disputed by some mainstream immunologists, it seems to produce dramatic results for patients across a spectrum of illnesses. Results are often temporary (lasting 2-3 weeks), require some trial and error (with different antigens), and can cause adverse reactions. On a positive note, repeated dosing can produce additional benefit and some have reported long term remissions.

    It is sometimes conflated with homeopathy (due to the ultra low doses used), but appears to work via a different mechanism.

    --------------------------


    I found an interesting entry on Dr Vincent's LDI antigen list on Facebook.
    I'm not sure if Dr Vincent is familiar with Drs Chia / Hyde / Ramsay enterovirus research, as he seems to be using the CBV4 antigen for Sjogren's and T1 Diabetes. I've not come across any CFS/ME patients trying it. Given the success Dr Vincent seems to have with the EBV and Lyme antigens, I wonder if the enterovirus subset of ME patients might benefit from the CBV4 antigen.

    I have emailed Dr Vincent informing him of the link between enteroviruses and ME.

    --------------------------

    Has anyone here tried Coxsackie B4 LDI or know of anyone who has?

    Tagging some enterovirus and LDI folks @Hip @halcyon @Sushi @serg1942
     
    Last edited: Sep 2, 2017
    Patrick*, ScottTriGuy and echobravo like this.
  2. Rossy191276

    Rossy191276

    Messages:
    77
    Likes:
    248
    Brisbane, Australia
    Hi Jesse... have you talked to people with ME who say have the protocol has helped... I talked to their office as I have tested positive on some Lyme tests but I've always found it difficult to find people with ME who have tried or really been helped by it besides the one thread in this forum...

    I am currently trying lyme antibiotics again even though I'm not convinced I've ever been infected but still considering it as an option...

    Cheers

    Rossy
     
  3. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,726
    Likes:
    4,350
    Southern California
    Hey Rossy, haven't talked to many directly, probably read the same sources you have. Which antibiotics are you trying?
     
  4. Rossy191276

    Rossy191276

    Messages:
    77
    Likes:
    248
    Brisbane, Australia
    I was on doxy and tindamaz last year and am minocycline and tindamax at the moment and considering adding rifampin for a short trial in case bartonella is playing a part. But as I said exertion intolerance is my biggest symptom which can trigger severe crashes ( currently bed bound and unable to talk for most of last 5 months) so I tend to think Lyme was either trigger and is now gone or my test results were false positives and didn't contribute to my condition
     
  5. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,726
    Likes:
    4,350
    Southern California
    Yes I often wonder how many of these pathogens ar truly still present. I have a positive IgM for mycoplasma pneumoniae. But even positive IgMs can hang around for a couple years.

    Dr Vincent's theory is intriguing, I wish more research was being done
     
  6. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,402
    Likes:
    21,596
    Albuquerque
    serg1942 just returned from a conference with Dr. Vincent. He may know something more, though he is not often here on the forum. I have not tried this antigen.
    Yes, the pathogens may not be actively present any more, but the immune system may be "stuck" trying to fight them. It is not only intriguing intellectually, but fascinating in the sometimes very positive patient response.
     
    dadouv47, lafarfelue and Jesse2233 like this.
  7. Rossy191276

    Rossy191276

    Messages:
    77
    Likes:
    248
    Brisbane, Australia
    Hi Sushi

    I know you have been seeing Dr Vincent...You talk about the sometimes very positive patient response... are you aware of how common patients who consider themselves to have ME have had positive responses with his treatment?

    Cheers

    Rossy
     
    Jesse2233 likes this.
  8. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,726
    Likes:
    4,350
    Southern California
    Given all the different antigens and trial and error methodology, I wonder how this could be arranged into a trial. I know that Drs Klimas, Nathan, and Hirani have all showed interest.

    Speaking of other doctors, I also inquired with Dr Hirani about the Coxsackie B4 antigen. She said she hadn't seen much response and that more CFS patients respond to EBV, Lyme, and mycoplasma antigens. Haven't heard back from Dr Vincent
     
  9. Aroa

    Aroa

    Messages:
    93
    Likes:
    491
    Spain
    Jesse2233 likes this.
  10. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,726
    Likes:
    4,350
    Southern California
    Thanks for sharing this Aroa, I'm reading through them with Google translate, some of the responses to LDI posted are extraordinary.
     
    Aroa likes this.
  11. Rossy191276

    Rossy191276

    Messages:
    77
    Likes:
    248
    Brisbane, Australia
    Hi Jesse

    Can you give a short summary of your thoughts after reading the threads??

    Cheers

    Rossy
     
  12. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,726
    Likes:
    4,350
    Southern California
    Sure, haven't read through them all yet though

    In a nutshell it's clear some people are having dramatic responses (both positive and negative) and their accounts seem credible.

    Some of them are consulting remotely with Dr Vincent, others are seeing a local doctor in Madrid who is now using LDI.

    The responses vary in length and require some trial and error. There is also considerable discussion of the scientific mechanism at work. @serg1942 is active on that board and published a well researched paper on how it may work.
     
  13. Rossy191276

    Rossy191276

    Messages:
    77
    Likes:
    248
    Brisbane, Australia
    Thank you

    I was just able to figure out how to read some as well...

    I read Sergio's paper some time ago when i started considering LDI...it made some sense to me but I have no medical background and when I read the opinion of Jonathan Edwards and my difficulty in finding positive case studies besides Dr Vincent's claims in the past it has made me think it won't work with ME...
     
  14. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,726
    Likes:
    4,350
    Southern California
    Yes it's difficult to contextual the differing viewpoints.

    I think LDI is so new a consensus has yet to form. I certainly understand Prof Edward's skepticism on it as there are no studies and its theoretical basis is shaky. But I also do not discount the stories.

    I think it will be something for which effectiveness improves over time as more permutations of different antigens are tried, and a case history builds.

    I understand Dr Vincent is keeping meticulous records of patients' response, which is a very good thing
     

See more popular forum discussions.

Share This Page