Just found out I have active lyme disease. I am stunned. Help!

[roxie60]

Thank you Ema, I feel blessed to have you here sharing your experience!!! I think I was just frustrated when I wrote that I'm just so tired of never getting better and now this too.....just weary of the dance. Is the full panel of any usefulness or is just #188 and #189 sufficient? Not sure I get a choice cause what the doctor gave me includes all the ones I listed. I think I need to find an LLMD. I dont want to spend another 5 years poking around this, who knows how long I have had it if I have it.

 

[roxie60]

For others who are on the Lyme quest I just called Igenex and here is the break down on costs

Panel 6050 - $475.00 (includes IFA, IgG & IgM Western Blots and PCR(whole and serum). I was told IFA is just an antibodies titer test (thought that was the IgG and IgM?)

Panel 5010 - $410.00 (same as above except IFA not included)

Panel 5095 - $780.00 (most complete panel Babesia microti IgG & IgM, Babesia FISH, HME IgG & IgM, HGA IgG & IgM, Bartonella IgG & IgM, Bartonella FISH)

there are other panels that are variations on these and was told individual tests can be ordered. How does one decide which is the most likely to be useful?

I'm in education process once again - can I conclude that non of these tests are the Lyme ELISA antibody test I had last year? Guess what I'm asking is non of these tests are a repeat of the typical ELISA test most drs run?

 

[roxie60]

Easy to see how people with chronic illness end up in poverty, such a shame. Wonder if my insurance will cover any of this or will it be all out of pocket. If OoP I really want to be sure I'm getting the most useful test.

 

[roxie60]

Looks like the IFA maybe a repeat of the ELISA (looks for IgG and IgM response) so maybe can save $65 and go with 5010 panel. Anyone know for sure if the IFA from Igenex is in fact just another name for the ELISA test, guess I need to call them a third time today.

WHAT TESTS ARE AVAILABLE?
A variety of tests is available. Many doctors who are unfamiliar with Lyme disease just use the Lyme test
available in their local laboratory. This is usually the Lyme ELISA. This test measures a patient’s anti-
body, IgM and/or IgG, in response to exposure to the Lyme bacteria. By today’s standards, these tests
are not very sensitive. IGeneX, Inc. will only perform the ELISA test in conjunction with Western Blots.

The Lyme IFA (performed as part of a Lyme Panel) detects IgG, IgM and IgA antibodies against
B. burgdorferi. IgM-specific titers usually persist in the presence of disease. Antibody levels tend to
rise above background levels about 2-3 weeks after infection and may remain elevated in case of
prolonged disease.

The WESTERN BLOT tests (IgG and/or IgM) visualizes the exact antibodies you are making to the Lyme
bacteria. In some cases, the laboratory may be able to say that your “picture of Lyme antibodies” is
consistent with early disease or with persistent and/or recurrent disease. Not all patients have anti-
bodies at all times when tested. Antibodies are more commonly detected within the first year after
infection, although re-infection may cause a significant rebirth of antibodies. At most, only 70% of
patients have antibodies early, and the presence of antibodies alone does not make a diagnosis of
disease.

The LYME DOT BLOT ASSAY (LDA) looks for the presence of pieces of the Lyme bacteria in urine.
The assay specificity is better than 90%.

The PCR (Polymerase Chain Reaction) test, a highly specific and sensitive test detects the presence of
the DNA of the Lyme bacteria. The PCR test is often the only marker that is positive in all stages of Lyme
disease. The test can be performed on blood, serum, urine, CSF and miscellaneous fluids/tissues.
Unfortunately, Lyme bacteria like to “hide” in the body, therefore, PCR can often be negative. Studies
performed on different sample types suggest that performing PCR on multiple sample types improves
assay sensitivity. In the Lyme Panels, PCR on whole blood is performed as a courtesy when PCR on
serum is ordered. This gives the panel 80% sensitivity.

 

[Mog]

Have you had a PCR test for Bartonella? It is hard to find in blood but worth a try.

Sushi

Sushi, no I've not had the Bartonella PCR. Don't think they do it at Infectolab. Where did you get it done?
Thanks Ema and Snowathlete for the advice re Bartonella. Just re-read your article about it, Snowathlete.

Going off at a bit of a tangent - if my CD57 is so low (12), why do I react badly to echinacea? I've noticed over the last few years that it doesn't seem to agree with me, making me feel worse. It's an immune stimulant, so should it not be good for me if my immune system is suppressed - or is it like flogging a dead horse, my immune system can't cope with any extra stimulation? I don't think I do well on olive leaf or beta glucan either.

 

[Sushi]

Sushi, no I've not had the Bartonella PCR. Don't think they do it at Infectolab. Where did you get it done?

My PCR test was done at Redlabs.

Sushi

 

[roxie60]

How does one determine what stage or phase of Lyme one has?

 

[Mog]

My PCR test was done at Redlabs.

Sushi

My mistake, they do do the PCR test for Bartonella at Infectolab, but I didn't have it done. Is the result of it reliable / conclusive enough to say whether you have Bartonella or not?

 

[Ema]

How does one determine what stage or phase of Lyme one has?

Lyme is typically referred to as either acute or chronic.

Conventional medicine is not convinced chronic Lyme exists though they are willing to accept a post-Lyme disease syndrome. LLMDs see chronic Lyme in their practices every day.

I typically think of acute Lyme as within the first three months and chronic Lyme thereafter.

Ema

 

[roxie60]

So it is likely I am chronic Lyme (if I'm Lyme - I dont know what to believe anymore). With a CD8-CD57 result of abs 55 and 1.9% could not tell what stage Lyme that implied so now I get it is dependent on if you were recently infected or have been fighting symps for years . Just ordered the Igenex kit for the 6050 Initial Lyme panel testing. Was told it will take two weeks to process once they receive the kit back. Anyone know if blue cross blue shield covers this test? it is almost $500.

 

[Sushi]

My mistake, they do do the PCR test for Bartonella at Infectolab, but I didn't have it done. Is the result of it reliable / conclusive enough to say whether you have Bartonella or not?

PCR is checking for the DNA, so yes, reliable -- if they find it, but it is hard to find in the blood as it is an intracellular infection.

Sushi

 

[roxie60]

IgeneX is a very reputable lab. I don't think it is a scam.

I think there are two ways you can go with testing. You can test everything under the sun upfront or you can just do the Bb Western Blots and see if they are positive. They hold onto your blood at the lab so if those come up positive, you can call them and have them add on tests for the coinfections (double check that they still do this though).

My doctor ordered the WB's for me - #188 and #189. The cost was about $160 which is much more affordable than the full panel.

There is also some overlap with the antibiotics used for Lyme and the coinfections so some doctors may choose the appropriate antibiotics based on the clinical symptoms (Bart and Babs have some common typical symptom profiles).

Ema

Thx, Dr wants the 6050 test ($475). Takes two weeks to process once arrives back at Igenex. If I have to co-infections also that is another $780. How can this be so damn expensive when it seems hundreds of thousands are infected.

My mom is asking me do I have Lyme. I'm not even sure. All I can tell her is I have had a CD8-CD57 test that indicates chronic, persistent Lyme (per Igenex web site even tho it is not 100% specific for Lyme). Now I have to take this additional test to determine what kind of Lyme and if it is negative I have to get co-infection tests to see if different variety of Lyme.

If I understand, co-infection just means one can have more than one variety of Lyme infection. How does one explain Lyme disease to family / friends when I'm still trying to understand it.

 

[Sushi]

roxie60

Co-infections aren't exactly different varieties of Lyme, they are other infections passed on by ticks, horse-flies, mosquitoes, etc. or mother to child. They each have somewhat different treatments, though they overlap.

Medicare pays for IgeneX, not sure about other insurances, but sure worth checking.

Sushi

 

[roxie60]

Amazing info in these videos regarding Lyme. Looks like another rabbit hole disease that insuers and octors dont want to recognize similar to ME and CFS/CFIDS. Why cant I have something that is not a constant battle for recognition and support. argh I'm in a bad mood. Got to spend more money to find out if I have something that once again has no real medical and insurance support.

 

[Mog]

Going off at a bit of a tangent - if my CD57 is so low (12), why do I react badly to echinacea? I've noticed over the last few years that it doesn't seem to agree with me, making me feel worse. It's an immune stimulant, so should it not be good for me if my immune system is suppressed - or is it like flogging a dead horse, my immune system can't cope with any extra stimulation? I don't think I do well on olive leaf or beta glucan either.

Anyone know the answer to that?

 

[Ema]

I don't think that CD57 cells predict whether one is Th1 or Th2 dominant. So I would guess that if you are already Th1 dominant, doing additional things to boost that arm might not be helpful.

You might also have an allergic sensitivity to echinacea. It is related to ragweed.

But I'm not even sure that the Th1/Th2 shift theory holds much water.

Also some extremely ill people have high NK cells and some well people have low NK cells and vice versa. My LLMD doesn't find them all that helpful anymore. Some people also get better and their NK cells remain low.

So the above is just a guess because I don't put too much stock into either Th1/Th2 or NK cells as predictive of anything in particular.

Ema

 

[Mog]

Thanks very much Ema.

What is the test for Th1 / Th2 dominance? I haven't had that done.

 

[Ema]

Thanks very much Ema.

What is the test for Th1 / Th2 dominance? I haven't had that done.

I've only heard of one test for Th1/Th2 dominance. It was done by a specialty lab and it was pretty expensive. I can't remember it offhand unfortunately. If you are really interested, let me know and I will dig through my notes. I didn't pursue it because I wasn't sure if the theory made all that much sense.

Otherwise, I think it is determined by symptoms and reactions to things that are known to boost one side or the other like echinacea. There is also a whole list of Th1/Th2 shifters out there on the web if you google.

Sorry, it's been a while since I looked into all this and my memory is not all that fresh!

 

[Mog]

That's fine, thanks very much. I'll google it. I'd seen it mentioned a lot and thought it must be determined by a test, because people seemed sure that they had it.

 

[Ema]

That's fine, thanks very much. I'll google it. I'd seen it mentioned a lot and thought it must be determined by a test, because people seemed sure that they had it.

Here is the test:

http://www.truehealthlabs.com/th1-th2-cytokine-test-advanced/

Ema