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Which Tests to run? (IGenex)

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Posted 6/29/2015 5:36 PM (GMT 0)
I'm running the lyme panel, and I am also very broke. I need to be sure it's not or is lyme, as my slurred speech and swallowing problems is starting to accelerate at a rapid rate (mimicking ALS symptoms and it's starting to really scare me, does anyone else have this?) I'm only 24 years old :(.

Do I do the basic lyme panel, or the complete lyme panel that does the DNA test? I heard that they aren't very accurate so I'm just wanting to get advice. My western blot and ELISA came back negative by CDC standards, so I don't have much hope anymore.

I'm really scared right now. If it's not lyme, it's something far more sinister and possibly terminal and it's destroying my life.

thank you for the advice.
Posted 6/29/2015 5:46 PM (GMT 0)
Western Blot IGG/IGM. No need to get the PCR test if money is tight.
Posted 6/29/2015 5:53 PM (GMT 0)
Would you recommend the PCR? I'm just worried as both tests came back negative for ANY bands on the regular test at my hospital (ELISA & WBLOT). I'm afraid the same will happen with this test.

Thank you for the response as well, I'm borderline suicidal every day from these symptoms. I'm a 24 year old man that shakes and cries himself to sleep every night. I want this nightmare to be over. I really hope it's not ALS, but does slurred speech even happen in lyme?
Posted 6/29/2015 6:25 PM (GMT 0)
Yes, slurred speech happens in Lyme. I would not recommend the PCR, it is hard to get a positive test, that's why I said just get the Western Blot.

Just to clarify, I did the full Lyme panel with the PCR and while my Igenex test was CDC Positive, my PCR was negative.

Posted 6/29/2015 6:38 PM (GMT 0)
St0rch - The usual Western Blots aren't reliable/accurate. Your best chances at a positive result is Igenex IgM and IgG - even if it's not an Igenex or CDC Positive, there may be some positive bands present...which means you have lyme disease.

Have you been to a LLMD? I suggest you find one.
Posted 6/29/2015 8:01 PM (GMT 0)
Girlie,

Thanks for the response again. Every post I read, people indicate that when they did the CDC test that at least SOMETHING showed up on it. Mine was completely negative for any bands at all. How likely is it that the WBLOT from IGENEX will show anything at all?

There is only one LLMD in my area, and boy is he expensive. I'm doing what I can to take this one step at a time so I can afford it, but the symptoms make me want to do this faster.


Sarahm, thank you for the advice. I've heard about the PCR being very likely not to show lyme as it has to catch it in the sample. I guess I won't do that one.
Posted 6/29/2015 8:06 PM (GMT 0)
Why the Western Blot from Igenex? Because they have better testing methods...I believe they test for more strains of the Bb. They are specialized in Lyme testing...that is what they do.

I was negative on the IFA here in Canada...and so they wouldn't even consider doing the next step - WB.

I was Igenex positive a couple months later.
Posted 6/29/2015 8:07 PM (GMT 0)
So sorry for your suffering. My LLMD suggests only doing igenex tests #188 and 189.
Posted 6/29/2015 8:08 PM (GMT 0)
Plus, igenex retains your blood samples and you can order additional tests on your blood later, I understand.
Posted 6/29/2015 8:09 PM (GMT 0)
the Lyme WB IgM and IgG - is the 188 and 189 Igenex tests.

I heard they keep the blood for three weeks...do you know if that's correct Lisa?
Posted 6/29/2015 8:22 PM (GMT 0)
Not sure how long. It seems like it should be longer, so you could order more tests depending on initial test results.
Posted 6/29/2015 9:52 PM (GMT 0)
IgeneX Is considered the best & most sensitive re LD. So many coming here are incredibly fearful with symptoms similar to you. It may be something else, but doing a test with IgeneX will hopefully point u in a direction.

Previous thread which may be of interest to you (2 pages on ths thread):
https://www.healingwell.com/community/default.aspx?f=30&m=3414350&p=2
Posted 6/29/2015 11:00 PM (GMT 0)
St0rch,

I had a positive ELISA (Lyme antibodies) and no bands on my Western Blot through Quest. Subsequently, I had a positive IGENEX Western Blot.

It is worth doing their Lyme IGG and IGM, which is slightly less. You can start there. You can always add more tests for co-infections later on. That is the best bang for your buck.

Keep us posted.
Posted 6/30/2015 6:22 AM (GMT 0)
St0rch, we completely understand your anxiety and desire to get a positive test. Please know that if you see an LLMD (or any doctor that is truly knowledgeable about Lyme) they c an diagnose you based on your symptoms alone, without a positive test. The hard part is that a lot of us have strange symptoms that don't exactly match the typical Lyme picture that most doctors are familiar with. Still, please don't worry yourself too sick, continue to hang in there until you can get your test and results back.

I was having symptoms of MS for a couple of years before realizing my symptoms fit Lyme even better. I had lots of tests that came back negative from sub-par labs (but reputable, according to doctors and insurance) before getting a positive test. First I finally got a positive from Stonybrook (see the numbers in my signature) & a month later I got the IGeneX results that were much more specific and thorough (also in my signature). Before this, I'd had 7 tests that came back completely clean (including PCR) or with 1 band showing Indeterminate/Insignificant. It was completely worth the $200 to IGeneX to get this peace of mind. (But be warned that some folks still get a negative from IGEneX at times--even if they have Lyme. It's a tricky little bugger!)

It will take about 3 weeks to get your results from IGeneX. They keep your blood sample for 3 months in case you want to order any additional tests thereafter. Best of luck to you!!!!

Maui
Posted 6/30/2015 11:42 AM (GMT 0)
you MUST do the LTT ELISPOT for Borrelia at ARMIN LABS in Germany. email and they will send you a test kit free. you do not need a doctor's signature. INFECTOLAB in Germany also does the same test but it is much more expensive there.

I was negative for years on ALL tests including IGENEX and my life was destroyed for 20 yrs. Then, I turned up positive on the German test and am now in proper treatment.

LTT ELISPOT does not rely on antibody production or PCR
Posted 6/30/2015 6:06 PM (GMT 0)
Thank you for that information, Daffodil! I will likely get that test through Armin Labs in Germany in the future, after adequate treatment, when I want to know if this thing is still in my system.
Posted 6/30/2015 6:37 PM (GMT 0)
I'm sorry you've got those scary symptoms which are indicative of Mycoplasma, an often Lyme co-infection( but not always)

Dr Garth Nicholsen is the leading expert on Mycoplasma. He's a molecular biologist who's IMMED lab discovered that 5% of vaccines were/are possibly still contaminated w/Mycoplasma.

Mycoplasma is NOT always a Lyme co-infection....I got Mycoplasma pneumonia when I lived in Singapore; just after getting all the typical childhood illness vaccines done, for my move overseas!

It's an intracellular bacteria that 'feeds off' the mitochondria(cell batteries)

Labcorp labs tests for Mycoplasma(s)- Like 'Lyme' it must be treated w/long-term abx-

I don't remember how much labcorp charges for the test, but they also check for chlamydophila P.

I hope you can get some tests done, and get started asap on a treatment.
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