indeterminate result

how many docs consider an indeterminate result a positive one?? does anyone know how often people without lyme's can have indeterminates, even on the "specific" bands?

hi dowa, and thanks for your response.
i still don't have a llmd. i was waiting to meet with my infectious disease doc again, who ran a whole panel of tests like all the herpes, epstein barr, mycoplasma, etc etc. i was interested to see how those came back, as i have been loosely diagnosed with "pots-cfs-like syndrome." that is my diagnosis. it is very questionable. my team of docs agree that an infection or virus triggered this. but no one can answer which one. my ID doc, who also specializes in CFS, sees a lot of people with EBV and the likes that can cause CFS.
However, all those tests were negative for me. So, I still have no answers at all, and I honestly feel like lyme's is like the only possible option left. especially given that i have a history of a tick bite in africa, where, despite lyme's disease not being known there, an NIH study found the borrelia species in a village really close to mine that caused tick-relapsing fever. so i am definitely feeling the pressure to see a tick doctor. but i just want to feel like lyme's, or something similar, is a really viable option for me before i do that. i am a student, so the money would be really really really tough for me to come up with. i have some concerns about the onset of my issues and how much they don't fit the typical "lyme" picture. i started with facial flushing, panic attacks, and a really rapid and forceful heart rate. then came shortness of breath, chest tightness, and months later, finger joint swelling came. it just seems like an unusual onset of something like lyme's. i have not ever read in any literature about anyone having facial flushing, heart problems and panic attacks as the very first symptoms.
so i have reservations about shelling out hundreds if i don't have this problem. i have an igenex test with a positive 41 and indeterminate 31. this is not very strong at all. though, if the CDC would have considered a positive diagnosis had that 31 been firmly positive, then it seems like i could be right on the edge...

anyways, i am blabbing (sorry, really brain fogged right now!), and i know no one can give me an answer here, but i am just wondering if anyone knows how likely it is that people without lyme's would have indeterminate bands???

thanks, karen. that is very helpful.
i am wondering, how soon after treatment did you start to improve? has it been gradual over the course of the year, or are you just now starting to improve? how long does your llmd suspect you have had lyme's???
thanks so much!

After I started treatment, I herxed pretty badly for a month or two and very gradually started doing better and better. Periodically, the pain will cycle back around, but it only lasts for a day or two.

I grew up in Maryland, Massachusetts and Long Island and I can remember often having ticks on me. But about 5 years ago after a tick bite, I started with knee and hip pain. But of couse, I just thought the pain was because I was getting older. The about 2 years ago, I was bitten again. This time the pain started to get really bad and would move around my body, I started forgetting words and having "fuzzy thinking". By this time my son had been diagnosed and was on treatment, so I knew what to do and where to go.

I don't know what part of the country you're in, but here in NY, there are one or two LLMDs who take insurance. Because of this, they try to stay under the radar and treat conservatively. The doctor that treats me takes insurance, but because my son is so sick, he needs much more aggressive treatment and he sees a LLneurologist in CT. If you want the names of the docs who take insurance, Email me and I will gladly give you there contact info.

Hope you can get some relief soon.
Karen

gracietiger- NO, the coinfection tests are just as bad as the lyme tests if you aren't sending them to a special lab like fry-he looks for the bugs in the blood by microscope. And apparently Clongen is able to detect several different strands that regular labs don't. The #s are in the teens for different strands of bart and babs yet reg labs test for like 2. Very deceptive. Some doctors are oblivious to all the strands and tell you you don't have it if these tests come back neg. NOT very professional if you ask me. I think there are a lot of doctors out there who got their degree out of a cracker jack box. Just my opinion.

Gracietiger,

"i started with facial flushing, panic attacks, and a really rapid and forceful heart rate. then came shortness of breath, chest tightness, and months later, finger joint swelling came."

I had/have the same. Also I feel all my head is burning, and I can't handle warm weather. Also I have sweating and many times I feel I can't get air.
I went to a LD and he did a test for lyme. I asked him about co-infections but he said he only does test for lyme :(
I'm still waiting for result, but I think it's positive because the doc asked me to start taking Vitanax PX4, Human Gamma globulin, Hepabene...
I had a red rash about 4 years ago, but it was not very big, about 3-4 cm, but when it started to go away, i remember the middle of the rash became clear at first.