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Lyme Disease Support Group
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01/10/2008 09:23
lisa3
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Hi everyone....

I was dx with Lyme Disease a couple of months ago. I had rashes in August of 2004, and was not tested for Lyme. I have had numerouse health issues since 2004, including sleep disorders, psychiatric issues (mainly depression and ADD), muscle, back and neck pain and stiffness, etc.....

I was put on doxy for 3 weeks and I thought I had felt a little better, as far as the fatigue anyway, at the very end of the tx. I went to an Infectious Disease doctor and he had not yet seen my test results and kept saying, "if this is Lyme...". I got a copy of my results and faxed it to him. He did put me on another course of doxy even without seeing the results (which I am currently taking).

I didn't feel any better this time around...actually I feel horrible today, but not sure if it is from the die-off of the bacteria or not. I feel like I took too much cough medicine or something...my head is heavy and woozy. I am irritable, have a sore throat, headaches and some coughing last night (think it was post-nasal drip).

Anyway...my main point of confusion was my test results....

Western blot IgG was negative (only showed P41 band)

and IgM was positive (only showing P23 and P41 bands).

What does that mean?

Also, my CBC had low WBC and high Monocytes. My platelets were down about 35,000 from my usual of over 200,000.

Is it possible I have another problem going on? Why are my WBC low? and my platelets dropping?

It is not helping I havent heard from the doctor yet about my bloodwork after I faxed them for his review.

Sorry this is so long, I just am getting worried and I am tired of feeling so badly.

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01/11/2008 05:27
jaime1978
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Hello, and welcome. I am not positive as to how to read results....I do know that most of the time infectious disease docs are the worst to see about this, unless they are VERY open minded. My opinion of your feeling worse is the herx reaction (die off/toxins) pretty common. From only have 2 pos. bands in the igm I would venture to say the infectious disease doc will say negative.

I would suggest you print out a list of symptoms and co infections, mark which ones you have, and contact a LLMD (lyme literate doctor)

To answer your question, yes you could still have something else going on, BUT if you had the bullseye rash, I would venture to say that lyme is there as well. While you're waiting to find an LLMD start building up that immune system. Print out Bruscannos guidlines, those too can be found thru posts here too. He was really the pioneer of lyme treatment (he treated Daryl Hall), he's retired now, but his guidlines are really all we have. He says that some people can't take abx (like our friend Julie here), and in that case, building up the immune system is what needs to be done. And thru the research i've done, it's almost imarative for all of us to do, it's a must.

Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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01/11/2008 06:19
Jenn56
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Hey,If u want i posted my results 2 months back u can find them uder RESULTS ARE IN, I at first tested neg on 4 local labs,but then on igenex igg and igm tested pos,if u want u can look over my results and compare them,But if u find a good llmd u wont even need the results my llmd had an iv picline put in even without a pos result.Lyme needs to be based on symptoms,i remember when those neg results came in i had 50 of the symptoms i new i had lyme but no one would listen i truly thought i was out of my mind.But when i found the right llmd he didnt need results to tell him what we already new,Its about finding the right doc,or one who is ready to listen and willing to learn...JENN

Post edited by: Jenn56, at: 01/11/2008 08:19

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01/11/2008 07:15
lisa3
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Thank you both for the replies. I haven't gone to work the past couple of days, and I feel "foggy" in my head...kinda like I took too much cough medicine. No fever (actually, my temp is low, as I know some Lyme patients get) and I just can't move around alot or I feel nauseas.
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01/11/2008 08:01
Jenn56
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Thats kinda how ive been feeling the past two days,im thinking its bacause the kids had a cold,i have been on ceftin 1500 aday for just over one year now just dont think its working any more,I have been on Antivert for almost 8 months now thats for dizzyness,vertigo,i seem to have alot of problems with that always feel like im gonna fall over or kinda like a blackout feeling,But i also have had a ton of heart problems,It seems to never end.lol.The brain fog feeling i had ever since day one of this whole lyme thing,it kinda comes and goes i guess u get use to it,isnt that SAD LOL.See alot of docs only give a few wks of meds that were they are so wrong,it is sooooooooo important 2 find a doc that knows about lyme or one that is willing to learn,Because a few wks aint gonna cut it,I have been on ceftin 4 over one yr,and i also had a picline 4 three months.And once my llmd trys to get me off im sooo sick within a day or so.My llmd tells me it is a long road and the first 2 year is the hardest,and that i will be on meds 4 year.That sucks....I just wish ther is something else they could do 4 us..

Post edited by: Jenn56, at: 01/11/2008 10:04

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01/11/2008 10:37
lisa3
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I'm in the process of finding a LLMD because I am not sure what/if my Infectious Disease doc is doing what is best. I can't even get a call-back from the man, so he doesn't exactly make me feel like he's on top of things. If I need more bloodwork or a different medication, there is no reason why I should wait a week just to have him call me back so I can know if he even reviewed my original bloodwork. ARGH!
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