Finally have an appointment with an LLMD!

[Fran]

I finally have an appointment with an LLMD and I'm having bloodwork done for Lyme this Thursday.  He uses IGENEX.  I've put this off for so long because I have never actually found a tick on me and really question how I could possibly have lyme.  But given its been 4 years on AP and I'm seeing no improvement, I really feel like I better check it out before I decide what my next step will be.

 My question is: I've been on antibiotics (doxy, mino, IV clindy and zithromax) for 4 years now and I'm wondering whether this is going to have an impact on whether the IGENEX test is accurate?

My second question is: What all should I be asking I be tested for?  Should I be looking at all the different possible infections or is the basic test covering a lot of stuff?

Thanks for all your help!

[randyremote]

The Lyme test isn't necessarily accurate, anyway, it's just a diagnostic tool, but not reliable. Not sure if taking the anitbiotic would affect the test-probably not.
Igenex has many different tests-some are regional, some are just for Lyme, some test for the other tick-born infections, too.  The doc should be able to use your symptoms as a guide as to which tests to order.
Many people with Lyme do not recall being bitten, and nymph forms are almost too tiny to see.

[Kim]

[user=123]Fran[/user] wrote:

I finally have an appointment with an LLMD and I'm having bloodwork done for Lyme this Thursday.  He uses IGENEX.  I've put this off for so long because I have never actually found a tick on me and really question how I could possibly have lyme.  But given its been 4 years on AP and I'm seeing no improvement, I really feel like I better check it out before I decide what my next step will be.

 My question is: I've been on antibiotics (doxy, mino, IV clindy and zithromax) for 4 years now and I'm wondering whether this is going to have an impact on whether the IGENEX test is accurate?

My second question is: What all should I be asking I be tested for?  Should I be looking at all the different possible infections or is the basic test covering a lot of stuff?

Thanks for all your help!

Hey Fran,

Good work on pursuing the Lyme angle.  You said you were having the blood draw on Thursday, but Igenex wants the samples UPS'd back earlier in the week Mon,Tues,Wed, to get to the lab during the work week and not sit in a warehouse over the weekend.  You should have all your forms filled out and signed off by your doctor (that can be done anytime) and then go to the lab as early in the week as possible.  The instructions are in the kit for lab processing as well as all the shipping materials, labels, etc.  I waited for the lab to process my samples and then drove them myself straight to UPS so there wouldn't be any screw ups.  Done!

My LLMD says the tests for the co-infections are not that accurate, so basically all you need for a baseline is the basic Western Blot, which is Test #188 and #189 for around $200.  Your Lyme doc may want more so you'd have to check.  When I had my Igenex test I'd been on abx and tested “positive”.

When you get your results back (only sent to the doctor that signed off) be sure to get hard copies and don't just rely on the “pos” or “neg” result, because as you probably know, a “neg” could actually be very positive if you've hit on certain Lyme-specific bands. Once you get your results we can send you links to help interpret the findings.

Take care…..kim

[PetRescue]

Hi Fran-good luck with Dr. P-I hope he can help you. When I first went I just got the two tests Kim talked about. I wrote the $200 to Igenex and he sent in the sample and then he emailed me the results. It took about two weeks for the results to come back and I was IgM positive, but IgG negative, but still considered Lyme positive.

Then when I went for my first appointment he tested the co-infections (babesia, bartonella, etc), CD-57 (how your immune system is functioning), mycoplasma, CBC, thyroid, liver, and a bunch of other things. He tested those through Labcorp.

Let us know how it goes!

~jen

[Donna RA]

Hi Fran,

Im with you in that I never saw a tick on me, but after 3 yrs on antibiotics with minimal improvement, I got the Igenex testing done, while on Minocin.  Mine was not positive, but had specific bands which strongly point to Lyme, both IGM/IGG.  Even though my tests are not positive, my LLMD believes it is Lyme, based on testing and symptoms, and commenced treating.  I am happy to report that improvements continue, not as quick as I'd wish they would, but I am grateful knowing that I can feel better as time goes on.

Good Luck,

Donna RA and Lyme

[PetRescue]

Hi Fran-just wondering how your appointment went!!!

~jen

PS…I never in a million years would have thought I had Lyme. I never saw a tick or rash…until the day after I got my positive Lyme results-I found a tick in my scalp. Someone was trying to tell me to believe! 🙂

[Fran]

Jen-  My appointment went fine.  I just had the initial blood draw and not a full out appointment.  I wanted to wait until I get the results of the lyme test first before paying the money for a full appointment.

Dr. P did say that if I was positive he wanted me to start IV rocephin.  That seems different than the protocol that you started with him??

Fran

[PetRescue]

That is very different than my treatment, but it all depends on your symptoms. I am luckily not too symptomatic, so I think I am on a sort of “easy” course. I know IV's are used in Lyme treatment often, but I'm not sure what rocephin is targeting. I am on the amoxy for strep and zithro for mycoplasma. And artemisia for babesia. The good thing about IV's is I think they tend to work faster and since you've been on orals (and clindy) for 4 years, it will be good to switch things up!

Let us know your results!

~jen

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