Thank you for your replies to my previous post about my recent RA diagnosis. I definitely want to explore lyme before RA treatment, and I am very eager to do so ASAP.
IGeneX seems to be the lab of choice. I just called and they told me to order the #6050 panel. Do you agree? I understand I can get it thru any MD signature.
Should I go ahead and get the test right away, or should I try to find and schedule an appt w/ an LLMD first?
Thank you!
Taylor
Posted by Lymetoo (Member # 743) on :
GOOD MOVE!!
If you're tight on money....just get the 188 and 189.
Posted by sixgoofykids (Member # 11141) on :
I'm glad you're getting the testing done!
I scheduled my LLMD appt and had my local doctor do the IGeneX test. I knew that I wanted to see an LLMD even if the test was negative, and I wanted the LLMD to be able to start treatment right away and not wait for testing.
Posted by Aniek (Member # 5374) on :
Taylor,
You might want to make an appointment with an LLMD and tell them you have a doctor willing to order Igenex, and ask if you should get specific tests.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Aniek: Taylor,
You might want to make an appointment with an LLMD and tell them you have a doctor willing to order Igenex, and ask if you should get specific tests.
excellent idea!
Posted by Taylor (Member # 12775) on :
Hi Everyone,
So I called IGeneX again, and am a bit more confused now. I asked about co-infections (someone had mentioned it in another thread) and if it is separate. The lady suggested the # 5080 (Western). I told her that didn't make sense b/c their website indicates it is done by region and I'm in GA, so it seems I would need the 5090. I asked to speak to someone else and was on hold. I then was sent to a vm.
I am willing to do the tests, I just want to make sure I get the right ones. I called my endocrinologist office today and was told I could stop by for 5 minutes tomorrow to ask if he will sign the form for the test.
I tried to find a LLMD in GA using this site, but nothing came up in GA. If anyone lives in my area and has any suggestions, I would love to hear from you. Please feel free to contact me personally.
I really want to make sure I get the right diagnosis, so I am willing to do WHATEVER testing is necessary, regardless of the cost. I understand I'm looking at over $1000 for Panels 6050 and 5090. If these are the right tests, I will do them.
Does anyone know if these are the right tests? I'm looking at methotrexate in 2 months for RA, if I don't come up with another diagnosis.
Below is what IgeneX has on their site about co-infections tests.
Take care, Taylor
We also offer tests for the common co-infections of Babesia, Ehrlichia - Anaplasma phagocytophila (HGE) or Human Monocytic Ehrlichia (HME), and Bartonella. These co-infections are seen in approximately 20% of the patients with Lyme disease. The usual first tests to order for the co-infections are IFA antibody tests: Babesia microti-#200, Ehrlichia: #203 Anaplasma phagocytophila (HGE) or #206 Human Monocytic Ehrlichia (HME), Bartonella- #285 and Babesia FISH-#640. In Northern California, Oregon and Washington State, #710 (Babesia WA-1) is substituted for #200 for Babesia microti. A complete Panel has been established for the Midwest, Southern and Eastern Region (Panel 5090), and a Panel for the Western Region (Panel 5080). The FISH test (#640) is also included since it is a more sensitive indicator of Babesia infection, even in the absence of antibodies.
Posted by Taylor (Member # 12775) on :
Sixgoofykids,
Will a doctor do treatment for lyme disease even if no tests indicate you have the disease? Did your tests end up positive?
Take care, Taylor
Posted by sixgoofykids (Member # 11141) on :
If you have Lyme specific bands that show up, most LLMD's will treat based on that with symptoms.
If you show Lyme symptoms and a negative test, some will give you abx for a couple weeks, then retest. Sometimes the abx will stir things up enough to get a positive test.
I didn't have to worry about that as I had an IgG positive test with 8 positive bands.
Most of us have to travel to see our LLMD's. I fly to NY to see mine.
Posted by Taylor (Member # 12775) on :
Hi Sixgoofykids,
Wow!
Taylor
Posted by Geneal (Member # 10375) on :
Dear Taylor,
I know there are LLMD's closer to you than NY.
I would not advise testing for co-infections as of yet.
Those tests are not real reliable either.
As Tutu said, order tests 188 and 189. That is the Western Blot IgM and IgG.
It will cost you $190.00 plus whatever your doctor charges for a visit and blood test.
I was diagnosed with Lyme disease by a duck before I ever saw a LLMD.
Wish I had known about Igenex then.
Just make sure you get copies of the test (and anything else your doctor does)
And if you have any questions, post your results here.
This info is helpful to have before you see a LLMD
As well as a symptom list.
Hugs,
Geneal
Posted by lymednva (Member # 9098) on :
Taylor,
Many of us had Lyme for so long before being tested (decades) and do not have positive tests.
A LLMD will treat based on a clinical diagnosis. That takes into account your symptoms, history, and any testing you have had done.
I have not had a positive Lyme test, but I have had a few positive bands and some key ones that register as equivocal. Based on that my LLMD has been treating me for more than a year. My reactions to the abx show that we are on the right track because I have been herxing.
I recently tested positive for Babesia, a co-infection. That's unusual. It's difficult to get a positive test for co-infections. I would not waste money on testing for co-infections unless your LLMD wants it done.
Posted by Taylor (Member # 12775) on :
Hi Geneal and Lymednva,
Thank you for the information.
I've seen 'duck' mentioned. What does that stand for. I'm sure doctor of some kind, but couldn't figure it out. Related to quack maybe?
Posted by Taylor (Member # 12775) on :
Hi Geneal and Lymednva,
Thank you for the information.
I've seen 'duck' mentioned. What does that stand for. I'm sure doctor of some kind, but couldn't figure it out. Related to quack maybe?
Posted by Taylor (Member # 12775) on :
Oops! I hit enter too many times!
The co-infections was recommended on a previous thread b/c of my RA diagnosis. I'm not sure what the relation is, but I guess I won't order that test panel. I just don't want to chance missing anything!!!!