The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

Discussion in 'Lyme Disease and Co-Infections' started by Lemnia, Jun 11, 2015.

  1. Sushi

    Sushi Senior Member Albuquerque

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    I have not had any flares in symptoms though some people do. After I hit one of the effective doses (I am taking several types of antigens) I have about a week where I feel almost well and can do a great deal more physically without getting PEM. Others report that the longer they are on this protocol, the longer the "good" periods last. However, some improvements have stayed with me--great improvements in allergies, moderate improvements in sleep, and moderate improvements in brain fog.
    Just over 6 months--early days yet.
     
    Mary likes this.
  2. Daffodil

    Daffodil Senior Member

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    sorry I cannot read the entire thread at present....but my doc keeps recommending LDI. I cannot afford to see Dr. Vincent at present. and I also am just not sure I want to take it....I can't even really explain why. I feel like I am making slow progress on antibiotics so maybe I don't need the LDI. I Just don't know

    do the vast majority of lyme docs like LDI now?

    do I take the Lyme one even if I am treating enterococcus and apparently have already been treated for Lyme? maybe the Lyme isn't even active now?

    I don't have anything else that is showing up active so which antigens am I supposed to use?

    LDI makes some sense if we are sure there is molecular mimicry going on ..but how can we be sure?
     
  3. Daffodil

    Daffodil Senior Member

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    ok so maybe i need antigens for the foods that i am sensitive to, so my leaky gut might heal?
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    It doesn't matter whether the the pathogen is active for LDI to have an effect. It is your history that counts.
    Quite possibly it could help.
     
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  5. foxy loxy

    foxy loxy

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    how are you doing @sushi? I am still watching you... trying to decide! I would do except there are some scary reports of permanent worsening very few but still...
     
  6. Sushi

    Sushi Senior Member Albuquerque

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    I do extremely well after a dose that is on target--feel pretty much well. So far the effects aren't lasting long for me though. Others have reported that farther down the road the beneficial effects last much longer.
     
  7. Daffodil

    Daffodil Senior Member

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    hi points. i am wondering if you have had improvements in the MS with the LDI..
    thanks
     
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  8. Daffodil

    Daffodil Senior Member

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    i am wondering if you have had a stool DNA test. i did antibiotics for years and did get better but the intense brain fog remains. 2 stool tests showed massive overgrowth of enterococcus, which i am told, along with severe gut dysbiosis, is the cause of my brain inflammation/fog.

    i doubted this a little but when i took rifaximin, i became very ill - a herx - and i think it is because the enterocccus was being targeted. i was told to stop it because of the huge flare and several days after stopping it, i had a big temporary imporvement in the brain fog.

    xo
     
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  9. foxy loxy

    foxy loxy

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    @Daffodil

    I have never heard of this before. I am going to check into it because brain fog/ and brain inflammation is my primary symptoms that seem antibiotic resistant! Thank you!!
     
  10. foxy loxy

    foxy loxy

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    ok, I looked it up and I don't appear to have the main symptoms of this...
     
  11. Sushi

    Sushi Senior Member Albuquerque

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    Dr. Ty Vincent is starting a series of very short (5 minute) videos for patients. The first one came out today:
     
  12. Sushi

    Sushi Senior Member Albuquerque

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    Second short video:
     
  13. Vitalic

    Vitalic Senior Member

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    In the latest video he talks about using dilutions of 10^40, even up to 10^50. There are roughly 10^54 atoms in the solar system, which means you'd have to imbibe every single atom in our solar system to ingest a single molecule of active ingredient. He then says the enzyme basically has no effect. So it really is just homeopathy, there is nothing in the mixtures. The only way to explain this is by appealing to the idea of water memory and "vibrational energy", which is in the same space as bio-resonance, Rife etc. I have had some exposure to this through family and have found it impossible to make the necessary leap of faith, yes there is a lot we don't know in science, but if Homeopathy worked it would show up in trials, the meta-analyses done all conclude that it is no better than placebo.

    He talks about measurable changes, for example in inflammatory markers as a consequence of the therapy, where is the evidence? I always say this with other forms of alternative healing, why can you not show me even one convincing case study, it's always anecdotal. It's difficult, because when in a state of desperation you can almost make yourself believe anything if there is the slightest chance it can help. But given how expensive these doctors/treatments are I would find it difficult to justify going ahead with this treatment based on the explanations given.
     
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  14. Sushi

    Sushi Senior Member Albuquerque

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    He said that about the first, very low dose. Later doses are more concentrated.
    The evidence is in patients' lab tests. He is a clinician and won't be running any studies any time soon--he is too busy with his practice. The part that impresses me, is my own response which has been very good. Many others with pathogen based symptoms are also getting very good results--but this is happening generally after the doses have been titrated much higher than the initial doses. It has taken me about 9 months of slow titration to get lasting results.

    P.S. If you are interested, you can read a paper posted in another thread: http://forums.phoenixrising.me/inde...romising-treatment-for-lyme-and-me-cfs.40621/
     
  15. Vitalic

    Vitalic Senior Member

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    Thanks, I saw that before, it was what initially peaked my interest. It is however based on the presumption that it could be having the claimed effect, which as I described above would require a mechanism completely unknown to science. I thought he said that sometimes he could not get an effect without increasing the dilution to those levels? I may have misheard, getting sleepy.

    By case study (should have said case report) I don't even mean a study or a trial, simply a detailed look at one patient's (anonymised if needs be) records that outlines the treatment strategy that was taken and documents the objective/observable effects.

    Anecdotal evidence doesn't carry much weight for me I'm afraid, there are too many known phenomenon that can cause people to think they are experiencing effects when they are in fact not. (Best outlined in this paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770065/)

    It would be truly astonishing to me if this were actually working, I would love to see something more convincing than anecdotes.
     
    Last edited: Aug 8, 2016
    geraldt52 likes this.
  16. Sushi

    Sushi Senior Member Albuquerque

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    Here is an interesting one on the difference between infection and an immune-mediated chronic inflammatory condition that is related to a micro-organism.
     
    sarah darwins likes this.
  17. Dufresne

    Dufresne almost there...

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    In this video Dr Vincent clearly states he believes the mechanism of action to be an "energetic or harmonics level interaction". He then describes the response as homeopathic. He also says he now believes the enzyme added to the dilution is likely redundant. So there you have it from the horse's mouth: it's homeopathy.

     
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  18. Dufresne

    Dufresne almost there...

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    I'm intrigued by Dr Vincent's work. I've experimented with homeopathy for my Lyme and co and been amazed to discover there seems to be something to it.

    At a 30, 60, 90x dilution of borrelia I induced a clear die-off, however the effect faded with subsequent doses. I also saw the vast majority of my symptoms disappear with a single dose of a babesia nosode in the same dilutions. It happened in a matter of hours, but only lasted about a day and a half. Again the effect faded fairly rapidly with subsequent doses. In both cases I tried further dilutions, up to 200C, without discernible effect.

    My experience seems to have been the nosode triggering my immune system to go after the bug rather than encouraging tolerance. However I believe it's possible that different dilutions encourage different effects.

    Interestingly the nosodes didn't have the effects they did until I was out of a moldy house. I'd noticed a slight effect from the babesia nosode while still in the the house but it wasn't positive or nearly as strong. It may be my system was just too irritated by other exposures for the remedies to really have much effect. So perhaps a shotgun approach including many antigens, as Dr Vincent offers, is the way to go. Indeed he seems to recognize food and environmental sensitivities as being part of the same complex.

    I know so many with environmental sensitivities who also seem to have problems with foods, electricity, pathogens (or toxins from pathogens). These reactions often stack up on each other. And yet, curiously, an environment can be problematic for someone at a certain time but not another, or for one person and not another. Similarly there are loads of people with the same infections as I carry who are asymptomatic. The trouble does appear to be with the reactions to the irritants.

    All this said, antimicrobials are still my main strategy at the moment. Well that and avoidance of known irritants. Does anyone know if Dr Vincent believes antimicrobials will prevent LDI from working?
     
    Last edited: Aug 13, 2016
  19. Sushi

    Sushi Senior Member Albuquerque

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    Not from working but that they can make your "core" or effective dose, a moving target.
     
    Dufresne likes this.
  20. Dufresne

    Dufresne almost there...

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    Incidentally, in the Battle Royale pool of ME/CFS clinicians and LLMD's a few of us have going behind the scenes, my money is now on this guy. Dr Montoya's reputedly vicious uppercut notwithstanding.

    [​IMG]
     

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