LYME question please

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jul 16, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. as you know, i am on antivirals for CFS and they have helped a little.

    i am going to see a neuro in NYC soon and i sent him some of my records. he sent me an email saying that he thinks i have had exposure to lyme.

    i really really dont think i have lyme. dr. lerner tested me at labcorp and dr. galland tested me at igenex and it was always negative. i really was only going to NYC so that this doctor would give me a spinal tap and look for HHV 6. instead, it looks like i have to go through a lot more than i bargained for ..UGH :(

    the NYC doctor saw on one of my old tests:

    Abs. CD8-CD57+ Lymphs,42,Low - normal range: (60-360)

    does this mean lyme??? can't it mean virus? i am so confused and brain fogged i tried to look this up but cant seem to concentrate.

    any help would be much appreciated.

    thank you

    [This Message was Edited on 07/16/2009]
  2. ulala

    ulala New Member

    I would try to see a rheumatologist while you're in N.Y., too. Lymphs refers to lymphocytes. It sounds like you may have some kind of immune dysfunction. A great rheumy in N.Y. is Dr. Harry Spiera. I used to see him when I lived in N.,J. He may be retired now, but his (gorgeous) son is also a great rheumatologist. When I last saw them, they were in practice together on the upper East side.

    Here's a site that mentions lymphocytes (don't let the lupus worry you, it's just a web site where a question was asked).;wap2

    Best wishes!
  3. TeaBisqit

    TeaBisqit Member

    The thing with Lyme is, you could have been bitten as a child and never known it. Have you seen how small the ticks are? You can fit a tiny tick on the end of a pen or smaller. And hardly anyone who was bit even remembers having the rash. You can get bit on the back of a leg or your shoulder and never even see it. You can get one in your hair and get bit on your head and never even know it or see a rash.

    For many years, I resisted the Lyme diagnosis, even though I was bit as a child and did have the rashes. I wasn't just bit once, I had three bites going up my leg all with the rashes. No one even knew at that time what Lyme was, so I didn't get treated.

    I think I resisted the diagnosis because my actual illness started with viral onset. But my feeling now is, the viruses break down the blood brain barrier that would normally help protect against the Lyme making us this ill. The Lyme gets up into the brain and gets into the central nervous system and wrecks havoc. So it is a combo of Lyme and viruses, you can have both.

    It can't hurt to pursue both diagnosis. I think the diseases go hand in hand and have nearly the same symptoms anyway.
  4. ladybugmandy

    ladybugmandy Member

    thanks guys. i guess you're right...though it can hurt for me cuz i pay for everything in cash! lol

    not sure if i have enough to see a rheumy in NYC......but thanks for the suggestions.....

    i will just have to ask that he look for viruses as well as whatever he wants to look for in the spinal fluid....

    ugh...i am so tired of jumping through hoops. i swore the last time was IT and now i'm doing it again....

  5. znewby

    znewby Member

    Also Sue, there is only one expert on lyme in canada and I hear he lives in Toronto.
  6. munch1958

    munch1958 Member

    Less than 40% ever see a rash...

    A nymph sized tick is the size of a poppy seed. An adult is the size of a sesame seed. Think about how you'd spot either one on you next time you get an "everything" bagel.

    It's very difficult to imagine (until it happens to you!) how something so small can absolutely ruin your life. Something this tiny can make you feel like and/or wish you were dead because some ticks (not all) are loaded with tons of crud like borrelia, bartonella, ehrlichia, viruses and mycoplasma.

    I've had 2 different EM rashes and a funky hand rash that looked like "ACA" or acrodermatitis chronica atrophicans which is associated with Lyme. All of my testing (Quest WB and Igenex WB) has been overall negative but I have many important Lyme associated bands that show up as IND or positive.

    I am 95% recovered and no longer consider myself as having "FM" or "CFS" as I don't have any muscle pain or fatigue anymore. (treatment details in my profile) I believed I had these 2 conditions for 28 long years and never thought it could be anything else.

    The important thing to know is the IDSA fiddled with the testing at the 1994 Dearborn Conference. Before this conference, serial Western Blots were the standard for diagnosis not the current 2 tiered method of Elisa followed by Western Blot if the Elisa is positive.

    The Elisa has been shown to be 85% inaccurate when it comes to Lyme but because of political reasons, money and patents, the IDSA continues to ruin things for us all by espousing their corrupted Lyme treatment guidelines. Racketeering.... is why they are under investigation by the CT Attorney General's office.

    A few bad apples took their unproven guidelines to the AAN or American Association of Neurologists. That group signed off on the guidelines as did IDSA thus creating the need for a hearing and a new panel on the flawed guidelines.

    For more info read PJ Langhoff's latest book on "junk science" and Lyme.

  7. Pansygirl

    Pansygirl New Member

    I'm sorry I don't have any information about Lyme ~

    It looks like you have gotten alot of good suggestions.

    I wanted to say I'll be thinking of you and hope you feel better.

    Let us know what you decide.

    gentle hugs, Pansy(Susan)
  8. Elisa

    Elisa Member

    Hi All,

    Can anyone discuss afternoon fever as a symptom of Lyme? I have had a fever for over two years - today it is about 99.7. It never goes to normal anymore - intially it would for as long as 10 days.

    Also what type of test is CD57?


  9. Nanie46

    Nanie46 Moderator


    Here is the link for Dr Burrascano's lyme and coinfection contains tons of very important info......symptom list pages 9-11......coinfection info pages 22-27 with more info about symptoms of each 26 lyme info talks about afternoon fevers.........
  10. Elisa

    Elisa Member

    Thanks so much for your info - so kind of you and helpful to me!

    I have been on antibiotics for 4 yrs or so for mycoplasma pneun of the lungs - made breathing very hard. Am tapering off and having lots of problems - like more pain in spine and neck, and swallowing issues and other things.

    The fever is going higher too...

    Years ago - maybe 20 - I was told I had Lyme and they gave me antibiotics - and now I wonder if I still have it - but I guess we all do!

    God Bless,

  11. ladybugmandy

    ladybugmandy Member

    thanks pansy...i really appreciate your good wishes:)

    re: lyme...i asked the neuro that i just wanted the spinal tap and blood work and nothing else. he got offended and now i have no spinal tap. stuck with a non refundable NYC trip for tomorrow.

    dr. ablashi says i need a spinal tap badly as does loomis but no one will do one.

    should i go to that NYC doc and pay $20 000 for his other tests which i do not need, just for the spinal tap?

    i am so confused, depressed, and fogged...i have no idea what to do.

    munch..i heard that if you go a long time w/out treatment, lyme comes back after you stop the abx...yours didnt return??

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