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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Lyme on my mind

Discussion in 'Phoenix Rising Articles' started by wdb, Nov 11, 2013.

  1. roxie60

    roxie60 Senior Member

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    Well got call today from nurse, my pcp said no to consulting with a Lyme doctor to verify my results. Also said would not treat me for Lyme no matter waht doctor said since it is so controversial. But did acknowledge it was still possible that I had chronic Lyme. Feeling so much in limbo, very frustrated and down. Just want answers...why oes this have to be so damn hard to get help.
    Valentijn and M_Dramatic like this.
  2. vamah

    vamah Senior Member

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    Ugh. So sorry. Been there (not with lyme, but similar situation).
  3. M_Dramatic

    M_Dramatic

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    Just where I am right now too...(((hugs)))!!!
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Why not go to a Lyme specialist on your own rather than the consulting route?

    Sushi
    Valentijn likes this.
  5. roxie60

    roxie60 Senior Member

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    @Sushi I am trying to get into an LLMD in another state (the one closest to me) but they are currently backlogged and could not promise they could get me in until maybe February.

    I then asked if the doctor would be willing to consult with my doctor and at least give me confidence in her Negative for Lyme diagnosis based on discussing the test results and my history. I was told yes she would be willing to consult. That is when I sent letter to my doc and asked her to do the consult. So for now I am in limbo until I can get in to see LLMD. Will call next week to see if I can send copies of my tests and short history (not sure how to make 8 years short) to the LLMD and see if she will give me some idea.

    I am on the LLMDs contact list when they have an opening.
    Valentijn and Sushi like this.
  6. Astrid13

    Astrid13

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    Keep pushing! Doors will continue to slam, but it's worth the fight to have answers and direction so healing can begin ASAP!! You all can always contact Igenex Labs, get a test kit mailed directly to you.

    You must find a physician to sign the orders and will need to pay in advance, but Igenex will give you CPT Codes to file with your insurance for reimbursement. The results will go directly to your doctor and you can obtain them from them, but at least that part is covered when you finally get in to your LLMD and that's one less step in the waiting game.

    Results come back in 14-16 days. You will need to order test 6050 and CD57. Many of the coinfections can be dxed with clinical checklists. It is the most amazing feelings to finally have answers and direction. Knowing is half the battle!!

    Also, walk in labs, like Any Lab Now will draw the blood as long as you have the lab kit and they will be shipped free of charge overnight. There is a $40 drawing fee, but when the results come to them, they may be willing to forward the results directly to you and wa-lah! Confirmation!!

    The CD57 to 6050 will run you $450-550, but in my case that was a drop in the bucket compared to the thousands I've shelled out with no diagnosis! It's worth it if you believe you have been infected. No one, no region, no state is immune!! Best of luck! I'm here to help!!
    Last edited by a moderator: Nov 29, 2013
  7. M_Dramatic

    M_Dramatic

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    Ok.....haven't really been following closely---would sure like to know what Dr shoemaker offers. I was exposed to mold 3 years ago not sure if still being exposed...is it possible that the affects linger? Am I crashing this thread w this question? Also I had blood flow Cytometery done CD4 etc and some were a little high, but no interlinked tests......I really need to talk to someone about this!!!
  8. Astrid13

    Astrid13

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    So far, what diagnosis have you received and what are your worst symptoms?
    M_Dramatic likes this.
  9. M_Dramatic

    M_Dramatic

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    Wow...well to make long story short for now-fatigue biggest symptom, all believe I have inflammation, IBS,minor pain, neorological issues incl eye pain, dizzy, etc!
  10. anniekim

    anniekim Senior Member

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    I did testing with infectolab in Germany. I had two indeterminate results on igm and no igg. My cd57 was low also, was 57. Infectolab claim this suggests Neuro borrelia infection. I am not so sure. In my internet searches cd57 may also indicate not only Lyme but virus's and other things that they are still not sure of.

    For the time being I don't feel my results or symptoms (though I am bedridden) scream Lyme and so, rightly or wrongly, am not pursuing treatment. Obviously, treating Lyme when you definitely have it can help enormously but I have also heard of people who have treated a possible Lyme diagnosis with long term abx and have been made worse. dr Jamie deckoff jones who writes an excellent blog and has been ill with ME for years used abx for many years and believe it made her worse. She writes about it on her blog x-rx. If you scroll down to the second blog post on this log she talks about her thoughts on Lyme http://www.x-rx.net/blog/2010/05. I

    I do stress for some people, as Astrid's story illustrates, treating Lyme infection is incredibly beneficial and important but there do seem some people may treat when they don't have active Lyme. Also I think deckoff Jones suggests if you respond to abx at the start of the course of treatment this further shows treating Lyme is a good idea but it may not be a good idea to continue taking abx when you are having no response or a prolonged herx which she believes may not be a herx but a cytokine flare
    Last edited: Dec 7, 2013
    M_Dramatic and roxie60 like this.
  11. anniekim

    anniekim Senior Member

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    May I ask did KDM test you for this and if so did he use infectolab? Thanks
    M_Dramatic likes this.
  12. anniekim

    anniekim Senior Member

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    Justy, I live in the UK and did Lyme tests privately through infectolab in Germany. You don't need a GP's referral but the tests aren't cheap. Unfortunately, my results were indeterminate so I am still not clear as to whether I have it or not and for the time being am not pursuing treatment.
  13. snowathlete

    snowathlete

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    Yes. I was negative by PCR and serology showed only band 41 for spirochettes. I then had an Infectolabs test which was a weak positive. KDM said it was positive - I hear that results are low if you have been sick a long time as you don't get much of an immune response. If treatment works then over time the result actually gets higher at first. I think Bartonella is more of a problem for me than Lyme though.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @anniekim

    When you mentioned Infectolab, did you have the LTT test? It seems to be pretty accurate unless you have low lymphocytes. It is not an antibody test.

    Best,
    Sushi
  15. anniekim

    anniekim Senior Member

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    Hi Sushi,

    Yes, I did the LTT test which came out negative, which further made me lean to thinking I don't have an active infection, although I am not totally sure. I read somewhere the LTT has 75% sensitivity so don't know whether this is true. Infectolab said a negative LTT doesn't rule out Lyme but I I think it adds to the possibility of not having it with only two indeterminate igm antibodies,

    Excuse my ignorance when you say low lymphocytes, is this referring to the cd57 test or something else? Thanks
  16. anniekim

    anniekim Senior Member

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    Thanks Snowathlete. When you say only a weak positive with infectolab do you mean just one indeterminate band or perhaps a few indeterminate? I hear you though that you think bartonella may be more your problem
  17. anniekim

    anniekim Senior Member

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    Justy, I live in the uk and sent my blood to infectooab in Germany. You don't need a GP referral but not cheap unfortunately
  18. snowathlete

    snowathlete

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    hi anniekim, The results of my Elispot LTT test were:
    Borrelia burgd. Fully Antigen (+): 2
    Borrelia OSP-Mix (OSPA/OSPC/DbpA): 1
    Borrelia LFA-1: 0
    "The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for a
    borderline/very weak actual cellular activity against Borrelia burgdorferi."


    Best
    Joel
  19. anniekim

    anniekim Senior Member

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    Thanks Joel, I'm clear now that you did the LTT elispot test, not antibodies.

    I did the LTT and came out negative, 1, 0, 0
    snowathlete likes this.

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