1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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I am booked in to see Prof. de Meirleir in January

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

  1. snowathlete

    snowathlete

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    I'll be happy to share them, but unfortunately, I am still waiting. I hope they will arrive on Monday, but who knows, could be weeks yet..
     
  2. maryb

    maryb iherb code TAK122

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    Does your postman deliver Bank Holiday Monday then:D
    Its hard to wait so long isn't it? Hope they come soon and you can get started on treatment.
     
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  3. snowathlete

    snowathlete

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    Still waiting on results. ahhhhhhhhhhhh :(:mad::confused::eek:o_O:cry::thumbdown: :aghhh: :ill:

    I know I was told to expect a long wait, but it is so frustrating waiting to start treatment, I feel like I am in limbo.
    Four months ago to the day that I was in Belgium.
     
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  4. WillowJ

    WillowJ Senior Member

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    that does seem like a long time
     
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  5. santi

    santi

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    Indeed it is. I guess the doctor is very busy, has a lot of patients.
     
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  6. snowathlete

    snowathlete

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    My results are in!!! :)
     
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  7. Valentijn

    Valentijn Activity Level: 3

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    Well, what's the verdict?!? :alien:
     
  8. snowathlete

    snowathlete

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    Well, I'm still reading through it all, but basically he thinks that I likely have Borreliosis and Bartonelliosis and I have several strong food intollerances (dairy, eggs, gluten, wheat, corn and orange) I would have guessed these myself, except corn. I have some gut disbiosis, with one good bacteria completely absent :eek: .
     
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  9. snowathlete

    snowathlete

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    Here they are then. Very pleased I did all these. Some surprises and some not, but all very intersting I feel.
    Comments welcome!

    Intollerances/allergy/exposure etc.
    Fructose breath test - neg
    Lactose breath test - neg
    Food alergy panel – lots of strong intolerances (all dairy, egg, wheat, gluten, corn, oranges)
    IgA/IgM oxidative products – all ok except anti-cysteic acid/M which is 4.6 (0-2.0)
    Molds IgG panel - neg
    Urine-neurotoxine test - neg

    Immune
    Proinflamatory cytokines panel:
    IL-1betaS – 25.9 (0-3)
    IL-6S – 483.7 (0-5)
    IL-8S – 4689 (0-15)
    MCP1 – 131.6 (0-165)
    MIP-BETAs - 7352 (0-155) Tgf-BETA1s – 11803 (1674-12400)
    TNFs – 32.6 (0-6)
    Cytokines RNA, Th1/Th2 – in range
    Perforin expression – 1398 (250-750)
    Elastase – 129 (0-150)
    CD57+/CD3- absolute count – 239 (60-360)
    Solube CD14 – 929 (1430-2800)
    C4A serum level – 0.54 (0.57-1.68)
    Prostaglandin E2 – 28.3 (0.17-6.4)

    Genetic and activity assays
    GVDM polymorphisms - f/f b/b
    Nagalase activity – 0.83 (0.32-0.95)

    Pathogens
    HHV6 - 0
    HHV7 - 0
    EBV - 0
    Borrelia burgdorferi sl / PCR - p41 on blot. See: http://www.latitudes.org/forums/index.php?s=6a4f6e4efebcf6577798a8b8fc789b9d&showtopic=7230
    Bartonella spp / PCR –grey zone (sent for sequencing)
    Babesia spp / PCR - neg
    Stool test – (high Bacteroides group. Bifodobacterium group absent. High Anaerostipes (from Lachnospiraecea group, low Gram+/Gram- ratio)
    Borrelia serology panel (B. burgdorferi ss, B. afzelli, B. gariniii, B. spielmanii, B. bavarinensis) – neg
    Zoonosis serology screening panel (Bartonella henselae, Borrelia burgdorferii, Coxiella burnetti, Rickettsia conorii) – neg
    Toxoplasmosis IgG and IgM - neg
     
  10. Gypsy

    Gypsy Senior Member

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    This makes me wonder how many of us actually have a lot of food intolerances.

    If you are allergic to oranges, wouldnt this mean you have a fructose intolerance? Is there fructose in oranges? Sorry if that is a dumb question! I've actually never heard of an orange allergy!

    Best of luck with KDM! You've got a lot of great results and a great doctor and I hope it leads to successful treatment and improvement!
     
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  11. aquariusgirl

    aquariusgirl Senior Member

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    so you may have a bartonella infection.. you were negative for everything else. is that correct?
     
  12. Valentijn

    Valentijn Activity Level: 3

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    People can be allergic to pretty much anything :p But in the case of the food intolerances we develop with ME, it's more likely to a be a leaky gut or similar issue, allowing proteins to leak out of the gut and into the bloodstream, where they are recognized as foreign and attacked, causing an immune reaction.

    It's not really an allergy, although it is an immune reaction. Bad news is that we can start reacting to pretty much anything at any time. But the good news is that if the leaky gut is healed somehow, it might be safe to eat those foods a gain some day.

    I'm also reactive to egg yolks and dairy, as well as cranberries, broccoli, pineapple, banana, pecan, and sesame, according to IgG tests. I also react to egg whites and gluten, though it's a different reaction (faster, more intense swelling, and of shorter duration), and the test didn't pick those up.

    It's pretty hard to guess what's going on, but it seems like something pretty complicated.
     
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  13. snowathlete

    snowathlete

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    I think most fruits have fructose in them but my fructose breath test was fine. So it must be something else in them that I react to.
     
  14. snowathlete

    snowathlete

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    Well in terms of pathogens it looks like I'm positive for bartonella, and maybe Parvo (see my earlier post on the first set of results - though he didn't mention that in report so I need to ask about that) and the Borrelia blot test showed I have antibodies against flagella. Now this may or may not be Borrelia, some other bacteria have them (they are the tails that make them motile) but my cytokines being so high as well as my other immune markers and some of my symptoms support the diagnosis of Borrelia. So he thinks I have that too. I think he's right.
     
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  15. aquariusgirl

    aquariusgirl Senior Member

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    Does a Lyme diagnosis seem plausible to you.
     
  16. snowathlete

    snowathlete

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    Lyme isn't uncommon here where I live. So many of the symptoms are the same and with the picture muddied by Bartonella also, I think it's plausible, yes. At the same time I'd say I'm pretty much smack bang in the middle of what you'd call an ME patient when you look at symptoms, etc.

    If I'm lucky treatment will work, but I don't know what my chances are. I'm probably going to have to get most stuff from abroad as I've had trouble getting anything in the UK with the Belgian prescription.
     
  17. Diana S.

    Diana S.

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    My understanding is that ferritin goes high with inflammation in the body.
     
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  18. Tristen

    Tristen Senior Member

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    Shows some significant inflammation, but wouldn't the Elastace to be high as well with bacterial infections such as Lyme and Bartonella?

    From my experience, Val is correct about food allergies in ME actually just being an intolerance. I test positive for just about anything I consume too much of. I believe it's due to leaky gut, or some kind of dysbiosis.

    Glad your moving forward and getting some answers. I've always had the greatest respect for KDM.....clear back from Red Labs Reno that I recall, he was doing some amazing work.
     
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  19. snowathlete

    snowathlete

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    I don't know. I have a lot of research to do, I think. Although I know a fair amount about these two from a point of view of what they are, how you can get them and what symptoms they give you, I don't know much about the specifics of which markers are high in each of these diseases. Suddently, that is a lot more important to me :nerd:
    If anyone can reccomend a good Lyme forum (and good Bartonelliosis forum, if such a thing exists, then let me know!)

    Yes, I'm thinking along the same lines now. What is interesting to me is that a lot of the stuff that came up high on my test was stuff I eat a lot of. I wonder if i start eating the other stuff if my body will become reactive against that too. I hope it's reversible long-term.
     
  20. GcMAF Australia

    GcMAF Australia Senior Member

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    Don Lewis has many people with fooed intolerances
    the most is to fructose/ about 60-70%
     

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