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Posted 1/28/2011 7:55 PM (GMT 0)
Hi everyone! Happy Friday.

Of course the doctor doesn't think it's lyme especially since I don't remember getting bit or getting the rash. Figured that so it didn't bother me too bad or it was the ativan I took before I went. He said if I wanted, he'd retest me in a month. So people what can I do in this month to get these baby's moving around so they can find them??? He did admit it is a possibility but he doesn't think I have it.

I do have a bad ear infection and have been put on a 20 day course of Bactrim, will that help if it is indeed lyme?

Sent me for more bloodwork, took another 12 tubes outa me today on top of the 7 on Monday and not sure how many last week. Maybe I'll end up needing a blood transfusion and get lyme free blood. I don't remember everything they are testing with my blood but I do know CBC, more thyroid tests, tests to rule out lymphoma, and lots more. Also wants me to go for a thyroid ultrasound and MRI of my head (no comments..hubby had a field day when I texted him about that). But those tests have to be precertified by the insurance so I'll have to wait until Monday to schedule those. He said he's thinking lupus or RA.

Now for the test results.

Lyme Disease 0.15

Reference range

< 0.9 negative

.91-1.09 Equivocal

>1.10 positive

Thanks for all your help! And bucci I got your email but was in a hurry this morning (then got stuck in the snow behind my house..should have stayed in bed LOL). I'll get to it in a little bit. Thanks!

Posted 1/28/2011 8:23 PM (GMT 0)
The bactrim may in fact cause you to herx. It did to me after only 2 weeks into it. There's really no way to get the lyme to show up in the blood from what I understand. But get a copy of your bloodwork and see if anything at all came back abnormal. Sometimes lyme will trigger inflammation.
Posted 1/29/2011 3:30 AM (GMT 0)
If it causes me to herx, I'll know I'm on the right track. All he seems to think it is is lupus or RA. I know it's not but try explaining that to him. Just getting so discouraged and starting to 2nd guess myself and wonder if it really is Lyme. Has that happened to anyone else?

Going to try and get some sleep.
Posted 1/29/2011 11:59 AM (GMT 0)
Yes, I've second-guessed, questioned, wondered, and struggled with many mis-diagnoses over the years. Getting diagnosed with Lyme initially helped because it 'felt' right...and then I slipped back into the questioning and wondering thing when other (non-Lyme-Literate) doctors treated me like a nutcase for even considering the possibility of Lyme in this non-endemic area and with no known history of bull's eye rash or tick bite... One doctor even yelled at me for considering Lyme a possibility...unfortunate, because this doctor had been very good to me (probably saved my life at least once) up until the Lyme diagnosis...

A short course of antibiotics may indeed kick-start your immune system into making antibodies to Lyme, which is what the Lyme tests are looking for.

Your Lyme test results are only from an ELISA - the very inaccurate screening test (I think the screening test is something like 50% accurate...so there is a high probability of having a false negative with the screening test). The less inaccurate (but still not super great) Western Blot is a superior test for Lyme than the ELISA screening test, and it is best when a lab specializing in tick-borne infections does the testing (they tend to have more accurate results than the standard labs...). Most members here recommend IGeneX lab in California...see http://www.igenex.com/ for more info. I do not have any financial connection with IGeneX.

Take care,
Posted 1/29/2011 2:01 PM (GMT 0)
Jeannie,
Your experiences with your current doc is why we suggest that people see a Lyme-literate medical practitioner. Is that a possibility for you?
Posted 1/29/2011 3:28 PM (GMT 0)
It is so normal to second guess and actually good. Do your research. If you keep coming back to lyme, trust your instincts. Only you know your body and what you are feeling. Had I listened to my body and my instincts, I would have saved myself years of no treatment. However, i didn't know a negative test result could be wrong. It scares me how many people out there do not know that.
Posted 1/29/2011 6:08 PM (GMT 0)
I am working on finding a LLMD. I emailed ILADS yesterday and they emailed me back with the name and number of the Lyme Advocate in PA. I left a message for her. I am also working with the Lyme PA yahoo group of finding one, hopefully one that takes insurance. I pretty much do keep coming back to lyme. Did some lupus and RA research last night and neither one sounds like me at all. I'd love to get testing done at the IGeneX lab but that is just not in the cards money wise right now, unless someone knows of a loan/helper outer program for people that can't afford it. I'll check in throughout the day. Got to try and get some cleaning and laundry done and make dinner.

Thanks again for all your help.
Posted 1/29/2011 7:33 PM (GMT 0)
Sent you an email, Jeannie.

That always sounds ominous, doesn't it?
Posted 1/30/2011 12:06 AM (GMT 0)
Thanks for the email! Don't mind emails from anyone so feel free!

It was funny, when I showed my doctor my list of symptoms that I printed from the PA lyme site, he asked what was most bothersome. Told him it varied. One day the sheer exhaustion bothers me the most, another day its the confusion, another day the dizziness, anytime I'm out in public its the itchiness (don't want someone to wonder what is wrong that I can't stop scratching myself). Some days I feel better then others. Heck some hours I feel better then others. Felt horrible yesterday morning, by the afternoon I was feeling better (except being po'ed for getting stuck in the snow), by evening I felt like I wanted to get hit by a truck.

Another question, being I don't have a definitive diagnosis, what do I tell people who ask me what's wrong? I've been telling them that they don't know yet, which they don't but I know it's lyme.

I am just trying to figure this all out myself.
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