Just Diagnosed with LYME

Discussion in 'Fibromyalgia Main Forum' started by kimtheartist, Jan 23, 2006.

  1. kimtheartist

    kimtheartist New Member

    Hi all,
    I've been misdiagnosed with fibromyalgia. An md friend of ours thought that my awful arthritic pains looked like lyme. I had already had two negative lyme tests from my PCP. When he sent my blood to Stonybrook labs (cost me $250 out of pocket) it came back CDC positive for active lyme disease.

    I am now on antibiotics and feeling better.

    All I can say is if you have not been tested by a reputable lab (the test should take two weeks to get results)Please do! There are great Lyme disease docs but you have to look for them. I have learned a lot from the web site- flash.lymenet.org -check out newbie links and misdiagnosed stories-there are many!!
    Good luck,
  2. hopeful4

    hopeful4 New Member

    Hi Kim,
    I'm sorry that you have Lyme, but GLAD that you finally have the correct diagnosis!! Let the treatment begin!

    Me, too, and many of us here. DX w/CFIDS 6 yrs ago, and FM earlier this year. Finally got the Lyme DX in October.

    As you've said, the right lab is so important. I'm not familiar with the Stonybrook, what is the test that they give? I was DX w/Igenex Western Blot.

    Yes, lymenet.org is a great resource.

    How long have you been ill? Thank G-d you have such knowledgeable MD friend...he/she has really saved you!! Lyme can mimic so many other illnesses.

    Wishing you the very best as you go through treatment.
    Take care,
  3. kimtheartist

    kimtheartist New Member

    Hi there,
    Was tested with Western Blot also but the lab is much more sensitive. My LLMD in Ct. has also sent my blood to Igenex. I am on doxy 300mg/day - three weeks now.

    How are you doing? Meds? How did you find a good doc?
  4. goaska29

    goaska29 New Member


    Are you referring to LIU-Stonybrook University Hospital on Long Island? I grew up about 15 min away and will definitely check it out if that's the Stonybrook you refer to.

  5. Countrymom

    Countrymom New Member

    Glad to hear you have a diagnosis. So sorry it is lyme.

    I have it too. Glad you found lymenet...it is great.

    Is your name the same over there?

    Mine is Kentucky girl over there.

    See ya around the boards and good luck.


    p.s. Are you only on Doxy? have you herxed yet?
  6. hopeful4

    hopeful4 New Member

    I've been sick for 6 years, first DX w/CFIDS, then last year with FM also. I started to go to the Fibromyalgia and Fatigue Center (FFC) last year. There are about 10-12 around the country.

    That's where they finally diagnosed me with Lyme Disease in late Oct. '05. They are treating me there. I'll see how it goes.

    I'm using an integrated protocol. Now on oral Azithromycin, boluoke (lumbrokinase) for hypercoagulation, artemisinin, nystatin, probiotics, a bunch of supplements. Soon to start on Cumanda, then Burbur, and later on Samento.

    So far doing OK, increased brain fog, fatigue, aches, slight queasiness. Tolerable.

    How is it all going for you? What meds does your doc suggest for you besides the doxy? I couldn't tolerate the doxy so the Dr. put me on Azithromycin.

    Hope you feel better soon.
  7. kimtheartist

    kimtheartist New Member

    Sorry away so long. I am quite sick. I have been on doxy 300mg for almost 4 weeks. Thankfully, the big scary symptoms have died down the ones that sent me to the ER--(neuological attacks at bedtime-shooting electrical/burning pain in spine, neck, head body)
    Now I am having mild to moderate pain in neck/ears/joints/chest.

    Dr. P in Wilton, CT is an expert in Lyme Diseae. He doesn't take insurance but being seen by him is well worth it. He is a brilliant md and lyme researcher. You can find a Lyme expert on flash.Lymenet.org. (Hi Kentucky.... My name on lymenet is "humanbeing".)

    Dr. P added Biaxin to the regimine but I couldn't tolerate it. So still on doxy but I see him in a couple weeks and will hopefully be put on IV therapy.

    The best lab for testing is Igenex in CA, but our md friend worked through Stonybrook, Long Island--they also have very specific, sensitive tests for Lyme.

    Lyme is very scary-I pray alot, cry alot and try to live in the moment.
    Best to you...

    "We are spiritual beings on a human journey...."
  8. minimonkey

    minimonkey New Member

    After all these years of suffering, I am certain that I have Lyme, too -- the symptom picture fits perfectly, the majority of my symptoms started after tick bites in Humboldt county (one of the 3 most Lyme concentrated areas in the US, according to CDC) --- Lyme would explain the whole nasty thing I've been living with for 15 years.

    The thing that really convinced me is that yesterday I remembered a period of time in my 20s when I was getting chronic, unremitting UTIs and was on different abx for months on end....I eventually developed "allergic reactions" to *all* of them-- the docs decided I was a nutcase...

    I thought at the time I was having a cross-sensitivity reaction, maybe -- I'd taken these drugs before with no problem... (and, have I since taken some of them-- I'm not allergic to them!)--


    So, today I call the LLMD near me, who comes highly recommended, and pray that she can take me in as a patient. She also treats FMS.

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