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  • Confirmed Lyme, what now?

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    Old 03-01-2009, 03:50 PM   #1
    searching119
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    Confirmed Lyme, what now?

    Greetings - looking for some guidance.

    Bit by tick; pulled it out; had it tested; had me tested - confirmation of Lyme in blood. 3 weeks Doxy and tested again - Lyme squashed. Tested again in 4 months - Lyme still squashed.

    Its about a year now since getting it and I have had some very odd symptoms from awful neck aches (no injury) to fatigue and depression/anxiety.

    Where do i go from here. If Lyme does not show up in blood does that mean I don't have it or not? My Dr. wants to check me annually which is great but if I test OK does that truly mean its gone? Appreciate the help.

     
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    Old 03-02-2009, 06:23 AM   #2
    marshrose
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    Re: Confirmed Lyme, what now?

    That's a trick question lol

    all kidding aside, are you seeing a LLMD or a regular Md from your insurance plan?
    Do you have copies of your bloodwork?

    Why do I ask? I'll tell you alittle story. I had Lyme, confirmed by a regular Md, with a positive western blot lyme test. To be positive for this test you need to have 2 Igm numbers (bands), and 5 out of 10 IGG numbers (bands) which is the CDC criteria, and how regular Md's read these tests for positive or negative. A LLMD (lyme literate medical doctor), does not read them this way.

    First I had 2 IGM and 7 IGG. Six weeks later after antibiotics, 1 IGM 7 IGG. Dr told me Lyme gone I'm ok.

    I relapsed and was sick as a dog for 3 years therafter. I was treated here and there with oral antibiotics through those 3 years, between huge swollen ankles, large body rashes, hands that would shake, memory shot, exhaustion, visual disturbances, anxiety, heart monitors showing a problem, thryroid 3xs it's size, about 15? pills a day just to exist, and that's all I did was exist, until the point came of what they thought were seizures. The neuro gave me a spinal tap, which was positive for Lyme.

    By my blood results, I had ONE igm, and 7 igg. Technically, by CDC standards (not the best way to read a lyme western blot), I was negative. BUT, the one IGM band I had, was 23Kd. A Lyme specific band. It's an outer surface protien band. Why else would it show up in my IGM (IGM shows current infection, IGG shows longer standing infection/longer a time that you've had or were exposed to lyme in the blood).

    Alas, the LLMDs were right, and they were wrong, and I am one of the few that have the paperwork that shows, going by the CDC criteria is not always correct and failsafe.

    I would get your lyme western blot test results and see what bands are showing up, as well as goto a LLMD.

    Last edited by marshrose; 03-02-2009 at 06:29 AM.

     
    Old 03-03-2009, 05:32 AM   #3
    Renae610
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    Re: Confirmed Lyme, what now?

    Doctors should give a "clinical diagnosis" based on hearing your symptoms, but most doctors go by tests. Lyme tests are not accurate. IgeneX lab is best -- get that done.
    Find an LLMD through ILADS for testing & see what antibiotic and natural supplements treatments he/she recommends. But there are several natural protocols that may be better for you. PM me if you need more info.

     
    Old 03-03-2009, 10:49 AM   #4
    jenj770
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    Re: Confirmed Lyme, what now?

    Where were you tested? Most labs do not have the proper equipment/protocol/knowledge to test for Lyme. There are a few labs that you can rely on for accurate testing: Igenex in Palo Alto, Bowen in Colorado (I think) and another one the name of which I cannot now remember.

     
    Old 03-04-2009, 11:30 AM   #5
    mhouse11
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    Re: Confirmed Lyme, what now?

    Rosepetal:

    I agree with you that the CDC criteria is far from 100%. But I'm a little confused: if you had 7 IGG bands showing, this would be considered positive according to the CDC criteria. I don't believe you have to meet the requirements for both the IGM and IGG antibody responses.

     
    Old 03-04-2009, 07:37 PM   #6
    marshrose
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    Re: Confirmed Lyme, what now?

    IGG doesn't count to regular doctors except for 'exposure' similar to when you get a vaccine, doesn't mean you have polio, but you have IGG response to it to show exposure. When my IGM went from 2 (23Kd, 41) to 1 (23kd)\ CDC negative), they figured the IGG would tier down as well and it didn't. It then remained 1 IGM (negative), and 7 IGG (5 of 10-positive), four PCPs, 1 neuro, 1 rheumatologist, 1 endocrinologist, 3 infections disease doctorr all stated my Lyme was gone.

    3+ years later, still with 1 IGM and 7 IGG, I had a positive spinal tap and was sent to yet another different neuro, and a yet another differrent infectious disease Dr and began treatment. (I saw approx 45 specialists in the duration of a year due to symtoms), I have been to 2 universities. Many figured MS, brain tumor, hepatitis, aids, you name it I've been tested for it. From bone scans to stool in a cup, MRIs, to blood cultures.

    You don't haveto meet both,-only IGM. but when you have both they take both into consideration (IGG moreseo for longer standing infection/longer your bodies been exposed) as well as when you have only one IGM even if lyme specific, all doctors I went to relied on the CDC criteria, not clinical evaluation. Especially after all the severe symptoms, you think some would with that amount of bands, IGM or IGG, would have sought that avenue especially with everything else being negative except for antibodies against my thyroid with nodules, that went back to normal size and I was taken off the thyroid med approx 5 months after my Lyme was treated and never had a problem with it again. My sed rate was a 2-3 through the whole ordeal and that always suprised them as they assumed autoimmune for awhile as well.

    Hope I cleared that up

    Last edited by marshrose; 03-04-2009 at 07:57 PM.

     
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