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Author Topic: So sick
Member # 16776

Icon 9 posted      Profile for katiegirl625     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have had lyme is 10/06
my doctors took my blood and told me that i didn't have it, there was a negative and a positive on the test. they said it wasnt "enough" to treat me

they tested me for everything under the moon since 10/06... finally the past month they tested me for lyme again once again they told me it wasnt enough to treat but they would treat me just in case b/c i was so sick. Long story short i went to the hospital b/c i was having an allergic reaction to my meds, and the stupid doctor there put me on steroids and another antibiotic.

A week later i was feeling worse, i was admitted into another hospital, where they put a PICC line in me for my to give myself meds... another weeklater my doc called me telling me that picc line had to come out i did NOT have lyme disease the western blot came back with only one ban positive the rest negative... and told me he was going to stop treatment.

He asked me if i was abused at home... pretty much told me i was making up all the pain in my head and i had "head issues"
Needless to say I am not going to him anymore, i have an appt. with a lyme specialist in september.

But has anyone else went through something like this?
Its horrible, i cant get any answers i can't wait to see the specialist and get this taken care of

Posts: 52 | From Owings Mills MD | Registered: Aug 2008  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 15697

Icon 1 posted      Profile for Nessa1815     Send New Private Message       Edit/Delete Post   Reply With Quote 
OMG, I've been through hell with every single kind of doctor under the sun, for months on end.

I was told to find a good psychologist and psychiatrist. It was all in my head and to stop reading information on the internet.

I have been treated soooooo bad by doctors, but I'm too sick to go back and shove my cdc positive lyme test in their faces.

Skip the drama, find an LLMD. They do cost a lot if they don't take your insurance, which from my experience, most of them don't.

We took out a loan and my hubby says the money is already gone after meds, the doc visit, and lab work. [Frown] We are going to try to pull out all the money out of his 401k now.

I'd give up an arm just to feel well again. Like a 27 year old girl.

Good luck.

P.S. What band showed positive on yours? If you have been on some kind of antibiotics, maybe you'll have another band show up. That's what happened to me. I had all the symptoms of Lyme and a positive band 41.

I went on Doxy and these rashes I had since I got bite (by something, never saw a tick) turned into bull's eye rashes. I tested again and got a CDC positive.

This disease is way to complicated.

Edited to ask: What symptoms do you have?

"~*~My smile hides my bite~*~."

Posts: 506 | From N/A | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
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Member # 12346

Icon 1 posted      Profile for disturbedme   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
How did you find your 'lyme specialist'? You need to make sure it is a Lyme literate MD. Otherwise, it may be just another ID doctor who is going to see you for 5 minutes and then turn you away.

You should find your LLMD under Seeking a Doctor here if you did not already. Or post in there to make sure the doctor you are seeing is actually lyme literate.

One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
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Member # 11013

Icon 1 posted      Profile for Doomer     Send New Private Message       Edit/Delete Post   Reply With Quote 
I agree with distrubedme that you need to go to seeking doctor on this forum and post for a LLMD.

If you still have your PICC line in, it needs to be flushed on a regular basis and the dressing changed weekly. These two things are extremely important!

Yes, most of us have been thru the ringer in getting a diagnoses. THis is why it is critically important that you see a doctor (LLMD) who is experienced in lyme disease and coinfections and you will not find these doctors at a hospital or in the infectious disesase departments.

Posts: 188 | From ID | Registered: Jan 2007  |  IP: Logged | Report this post to a Moderator

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