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just got back from doing bloodwork

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Lyme Disease
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james from missouri
Regular Member
Joined : May 2009
Posts : 432
Posted 6/22/2009 7:56 AM (GMT -8)
the lady took 5 tubes of blood from me.

sent it off to the CDC for lyme and co-infections. did other bloodwork as well, i will know hopefully by friday. i guess this is step 1 to finding medical proof of what i have. i had a list of symptoms to give him, and he suggested we start with the bloodwork first and build off of that, which makes sense. i showed him how much my thumb and now feet shake. he didn't rule out ms or parkinsons. he said after blood work we can go foward either with a brain mri, neurologist and so on. So i don't feel any better, but i do feel somewhat better knowing that i'm on the path of a recovery process that could be good or bad, just depends on how i look at it when everything comes back...
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RottenDog
Veteran Member
Joined : Apr 2009
Posts : 1013
Posted 6/22/2009 10:22 AM (GMT -8)
i'll be praying for ya, good luck
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james from missouri
Regular Member
Joined : May 2009
Posts : 432
Posted 6/22/2009 10:29 AM (GMT -8)
^^thank you
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ktp812
Veteran Member
Joined : Jul 2007
Posts : 732
Posted 6/22/2009 10:37 AM (GMT -8)
Remember those blood tests are not always accurate. I was sure I would have a positive outcome on mine but never did. Have had 3 WB with co-infections. The only thing I ever tested high for was Bartonella.

Only had some IND with the Lyme tests. I am still trying to figure out what exactly is wrong with me after almost 5 years. I hope yours come back with some definate answers for you.

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james from missouri
Regular Member
Joined : May 2009
Posts : 432
Posted 6/22/2009 12:53 PM (GMT -8)
this is the scary part.. if it comes back neg, i should try igenex then?

or get ahold of a LLMD and test that way, because if it comes back neg on everything, i won't be happy, that sounds really bad huh
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pj1954
Regular Member
Joined : Feb 2008
Posts : 57
Posted 6/22/2009 1:21 PM (GMT -8)
yes definatly igenix you might not be cdc positive but these days you dont need that you can be diagnose clinically by most llmds.

my doctor says if even 1 band lights up on a western blot its enough to start treatment for a minimum 6-8 weeks of doxy .
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james from missouri
Regular Member
Joined : May 2009
Posts : 432
Posted 6/22/2009 2:01 PM (GMT -8)
exactly, doxy is so cheap why wouldn't you be safe and just take 2 or 3 months of it i hate when doctors say all you need is 3 weeks.. i'm like DUDE, just give me refills..
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CajunGrl
Veteran Member
Joined : Mar 2009
Posts : 4717
Posted 6/22/2009 6:40 PM (GMT -8)
James,

Good luck with everything. Let us know how your bloodwork comes out. Get a copy if you can.
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RottenDog
Veteran Member
Joined : Apr 2009
Posts : 1013
Posted 6/22/2009 8:20 PM (GMT -8)
demand your copy. in any test anyone has done you have the right to all copies. you may have to sign a relise form for it but do it.

good luck
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pj1954
Regular Member
Joined : Feb 2008
Posts : 57
Posted 6/23/2009 9:14 AM (GMT -8)
yes doxy is cheap so why dont they prescribe it for a longer time.

the doctors have no problem giving a kid tetracycline for 6 months for zits or to clear up acne.

hey maybe things will get better I see the ct attorney general passed a bill that protects doctors now for treating lyme.

maybe more states will follow suit and we can quit playing cat and mouse with the cdc and idsa doctors.  

before its too late and they have a full blown epedemic on their hands. oops too late its already here !   

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james from missouri
Regular Member
Joined : May 2009
Posts : 432
Posted 6/25/2009 6:58 AM (GMT -8)
got a call from the doc today, all tests came back NEG.. i'm going in to get the paperwork.. I"M PISSED!!!!!!
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Lovelabs
Regular Member
Joined : Jun 2009
Posts : 367
Posted 6/25/2009 8:01 AM (GMT -8)
James,
I know how frustrated this is for you. I got that phone call, too, telling me that my tests were negative. That was last May. I wasted my time with an ID specialist last summer. He initially treated me with 3 weeks of Doxy based on a clinical diagnosis. When I went for my follow up and I wasn't feeling better, he basically shut the door in my face. I tested negative through Quest with bands 41 & 66 positive. I had a rash in august of 2007. I knew I had it. That was the beginning of me finding a LLMD that could help me. I waited until October to see him. The wait was long. I could barely use my right hand. Not to mention all of the pain everywhere. My LLMD is great. Ruled out everything else to be sure. I have been in treatment since Oct. and I have slowly improved. I have full use of my hand, almost completely pain free. Still dealing with other issues but have accepted that this may be a long road. I told you all of this because last year I was where you are now. Don't waste anymore time getting in with a LLMD. 2 months ago I retested through Igenex. My request. My doctor didn't need the result. I still came up negative but 1 more band came up positive and 2 "IND.". Follow your gut and get to a good doctor. Most are very clueless about Lyme. Remember they are not god and you know how your body feels. I am lucky to be in CT where protection of doctors for treating Lyme are protected. Thank god. Don't know what I'd do without my doctor. Please find a LLMD...I think then you can stop guessing and driving yourself crazy and get back to feeling better!!!
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Lovelabs
Regular Member
Joined : Jun 2009
Posts : 367
Posted 6/25/2009 8:04 AM (GMT -8)
One more thing... Get copies of all your bloodwork!!!!
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CajunGrl
Veteran Member
Joined : Mar 2009
Posts : 4717
Posted 6/25/2009 11:51 AM (GMT -8)
James,

Get copies of your bloodwork and post the results here. We will be able to tell you which bands are Lyme specific. Just because your test was negative does not mean you do not have Lyme. My test was negative 2 times already but the second test had more bands and INDs on Lume specific bands.
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james from missouri
Regular Member
Joined : May 2009
Posts : 432
Posted 6/25/2009 12:32 PM (GMT -8)
the cbc test came back with a low blood count of 3.2

platelet count of 173

says my lyme was <.90
ehrlichia chaffeensis
result comment "anitbodies not detected"
<1.64
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