Hi, I was just hoping to get a little support and make sure I am doing things right.
I've had all kinds of symptoms for a long time. No known rash but I think there is a high chance that I just didn't see it when it happened to me.
I called Igenex and they asked if I wanted a blood or urine kit. I hope the kit is going to have a vial for serum and a vial for whole blood.
I decided I should get their complete lyme panel 6050. I got a doctor's signature on the test form. I know it will probably cost me $475 and insurance might reimburse me something (I'm hoping 50%).
So once I get the test kit, just get the lab to draw the blood, separate the serum, and mail it back? And does it take a few weeks?
If it comes back negative, I saw that Igenex said that there's still a couple more tests you should get because those could show a positive for Lyme still? Is that what the top LLMDs would do?
And if Igenex says positive, then they would try me on antibiotics right away? My doctor says Igenex has a lot of false positives too, but it's not that harmful to just see if I improve with weeks of antibiotics?
When I read other people's stories, I am hopeful, but I am worried about it just being a waste of money. But I feel like I have to know, don't I? It just sucks that Igenex might be false positive or false negative. I would just have to hope I am a clear positive. (I was negative on that stupid other basic lyme test.)
Posted by sutherngrl (Member # 16270) on :
Lyme Disease is a "clinical diagnosis".
Sounds like you need to find a good Lyme Literate Medical Doctor(LLMD).
You can go to "seeking a doctor" section or you can get in touch with a local lyme support group to find the nearest LLMD. Many of us have to travel out of state to find one.
I would definetly do the Igenex testing; but only a good lyme doctor knows how to read the results. Get a copy of your test results when they come back to take with you to a LLLMD.
Sorry you are ill! But glad you found Lymenet!
Posted by Lymetoo (Member # 743) on :
The lab should know what to do. Be sure to have the blood drawn early in the week.. like Monday or Tuesday.
What may happen is that it won't be clearly positive but you may have Lyme specific positive bands. That, along with your symptoms could indicate Lyme.
Yes, you need to find an LLMD for proper evaluation.
A few weeks on an antibiotic may produce a herx, which means you would feel WORSE instead of better. That would be a good indication that you are on the right path.
Then again, you may feel better!! It happens!!
Confused now?? That's Lyme!! Posted by Snailhead (Member # 18091) on :
Also, you don't have to mail your labs (blood) back, the lab that draws it will take care of that. Igenex will give you info on labs that are affiliated with them, you take the kit and hand it to them. They draw and Fed Ex for you.
Hope you get some definative answers. I am not sure what your Dr. meant by "alot of false positives". If the antibodies are showing up, you get a positive test. A false neg. is more likely than a false positive.
Posted by Pinelady (Member # 18524) on :
Smailhead is right. If you are not producing antibodies to the borrelia because they are being
masked by your own cell. It may be a false neg. Not Pos. Some do a antibiotic challenge in an effort to
get a positive. I drank homemade antibiotic for 4 mths to try to get a pos. and not waste any more
money looking for what was making me sick. If you have any borrelia specific bands and symptoms to
go with it, many LLMD's would treat and ask questions about a test later. Good Luck.
Posted by kidsgotlyme (Member # 23691) on :
I had to take my blood to the Fed Ex office myself when I had my daughter's blood drawn. It wasn't a big deal though.
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