lyme help please

[Manuel810]

Hello,

I have had been sick for 9 years, started with IC, then fibromyalgia, and just recently candida and a parasite and found out my thryoid is  very low. I have been on thyroid medicine for 5 months and the blood work has not improved at all the doctor just raised my dose to 180mg. I had a western blot test done by quest and it was negative but now i want to get it done by Igenex. What test would someone reccomend for me? I am also trying to find a doctor in san antonio, tx does anyone know how i can find a doctor? If anyone can help with any of these questions i would appreciate it. My current doctor thinks LYme doesnt exsist in texas. ughh!!! fusterating when you are sick and just want answers to get better.

thanks,

[Ricobord]

The PCR on blood is often false negative.  The concentration of spirochetes in the blood often isn't high enough in the sample for the lab to find it.  But when it's positive, it's pretty much definitive.  

The Western Blot will show antibodies present. If any are Lyme specific, then there's the proof.  Not everyone will have enough antibodies to show evidence of Lyme, but this test is much more likely to correctly show Lyme than a PCR on blood.  I am one example of this. I did the whole Lyme panel and only the WB was positive (IGeneX positive, but CDC negative).

IGeneX says their PCR on urine after an antibiotic challenge is highly accurate.  Most docs won't accept this test, though, because it is lab specific (as compared to the Western Blot, which uses a standardized method, even though some labs report a broader spectrum of bands than others).

[JackieCalifornia]

Why do a Western blot as a first stop?  Why not go straight to a PCR?

[Ricobord]

So sorry to hear you're suffering! Your doctor's response is common. Doctors in most of the country are told not to consider or test for Lyme unless a patient can prove exposure, which means travel to an endemic area, such as the Northeast or upper Midwest.

You'll want the IGeneX Western Blot test. It is the most likely to show signs of Lyme. However, you can be false negative even there, especially since you've been sick so long. It's possible your immune system isn't making enough antibodies to show up on the test.  It's a good start, though.  You might have trouble finding a doc to authorize it for you. The ivory tower researchers who say the tests are great are known to bad mouth IGeneX rather than admit that lots of Lyme patients are missed by the CDC testing protocol. Many doctors are under the belief that IGeneX is so unreliable, the results are useless. (Slander, if you ask me! They've passed all required CDC and state audits and their Western Blot is fully authorized.)  If your regular docs aren't willing, then you might try to find a holistic doc or naturopath, as it seems to me they're often more compassionate. I read about one guy who went to a walk in clinic at a WalMart where the doc signed it.

Contact IGeneX to ask for a test kit. They'll ship it to you directly, although you still need a doc's authorization.  When you do the blood draw, you have to go to a lab with equipment to spin the vial before shipping it out.  (My little local lab didn't have it. They sent me to the lab at the hospital.)  You'll have to pay up front. They don't take insurance, but most plans will reimburse you some or all of the cost if you submit a claim afterwards.

In the meantime, find an LLMD and get yourself an appointment.  

[mojogal]

I lived in San Antonio Texas and know for a fact there are no LLMD there. As a matter of fact there are few in TX. There is someone who is a quack and calls himself an LLMD in SA but nobody real.

I found help and support at MDjunction for Texas. They were the only ones 2.5 years ago that knew where the LLMD were hiding. The TX medical board has made all the LLMD flee the state so everything is on the down low.

The MDjunction group was fantastic and basically saved my life when I was misdiagnosed with MS, Lupus and other illnesses..

Just google MDjunction and then find the Lyme forum for TX.

Good luck and keep us posted.

[JackieCalifornia]

Welcome to MedHelp -- sorry to hear what you are dealing with, but good for you for thinking big thoughts about where to go from here.

Lyme can indeed suppress thyroid function, and it did in me.  After treatment, tho, it came back to normal very quickly.  

I have read about Texas being a no-go zone for Lyme docs, and it's a terrible shame on an otherwise great state.  Being centrally located in San Antonio, you may not be able to easily go out of state for treatment, but it may not be necessary.

I just googlesearched for

           texas lyme disease

and there were many hits.  There is a Texas Lyme Disease Association (txlda) that seems pretty hearty and has been around a while, but there are others as well.  I would search that way and see what you get.

Given how long you have been ill, it is not surprising that the W.blot was negative:  after a while, the immune system figures it has killed whatever is ailing you and just stops making antibodies.  

You ask what tests you should request -- but what you need is an experienced Lyme doc.  Lyme often (perhaps half the time) comes with other infections (co-infections) that need separate testing and treatment, and only an experienced Lyme doc can figure all that out.  Lyme diagnosis and treatment is not a do-it-yourself project, due to the medical complexities that confuse even the docs sometimes.

Only a Lyme doc, based on careful consideration of your history and symptoms, would know what tests to order, and even more importantly, how to read the results and what actions to take from there.  It may seem like a good shortcut to have the tests run yourself, but truly I don't think it is.  And even if you get back a positive test, a nonLyme specialist would not know how to react or treat other than a couple weeks of doxycycline, which is often insufficient.

Sorry to be a downer, but don't give up!  Do search online and see what support groups are out there, because once you are hooked into them, you'll find resources that don't advertise because of the thickheadedness of the Texas medical board.

Let us know what you do and how you do, and please stop by any time -- wishing you well --