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New IGENEX Results (compared to older Quest results), Please help interpret

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Posted 3/7/2018 4:39 PM (GMT 0)
Hi All,
about 10 months ago I had a western blot done with Quest and had these results (IgM Negative, IgG Abnormal for bands 23 and 58). Always had negative lyme screen prior to that.

I had started treatment about a month and then decided to stop for (to start treating other possible conditions). However I decided to retest myself with IGENEX and here is what I got today:

IGENEX Immunoblot--> (IgM +23, IND for band 41), IgG (IND for band 41), Screen (Negative).

It is very worrisome that I now have positive IgM Results. In the lyme world, is getting IgM (which is supposed to be an ongoing infection) more significant than the IgG results? What is the significance of getting two 41-IND in the IgM and IgG tests?
I still have very strong symptoms, but the insomnia seemed to get better although sometimes it randomly creeps in. But still with fatigue, sinus pain, unrefreshing sleep, Jaw pain which got worse in the past year, eye lid twitching, low grade occasional joint pain and cracking.


Thanks
Immunity

Post Edited (Immunity) : 3/7/2018 9:45:44 AM (GMT-7)

Posted 3/7/2018 5:48 PM (GMT 0)
Immunity - Testing isn't something you can rely on to gauge progress/treatment...unfortunately.

Having IgM band 23 just means that you had or have active infection.


You have 'strong symptoms' - so I'm not sure why these test results concern you?
Posted 3/7/2018 5:57 PM (GMT 0)
Girlie, to be honest after a while I wasn't 100% convinced that I had lyme due to no herxing with herbs (i know dumb reason) and the 100 other diseases that have the same symptoms. I also wanted to think that it may not be lyme and instead something easier to treat. So when I saw the IgM results it just reinforced the idea that it is probably lyme and the IgM usually means an "active" infection where in the past I was just positive for a couple of bands for IgG (albeit with a different lab) which could've meant that I was just exposed to it.
The reason I did the IGENEX was to proof to my self that I am indeed suffering from lyme.
Would you take the IGENEX results as a "stronger" indicator of the presence of lyme than the IgG from Quest?
Posted 3/7/2018 6:21 PM (GMT 0)

Immunity said...
Girlie, to be honest after a while I wasn't 100% convinced that I had lyme due to no herxing with herbs (i know dumb reason) and the 100 other diseases that have the same symptoms. I also wanted to think that it may not be lyme and instead something easier to treat. So when I saw the IgM results it just reinforced the idea that it is probably lyme and the IgM usually means an "active" infection where in the past I was just positive for a couple of bands for IgG (albeit with a different lab) which could've meant that I was just exposed to it.
The reason I did the IGENEX was to proof to my self that I am indeed suffering from lyme.
Would you take the IGENEX results as a "stronger" indicator of the presence of lyme than the IgG from Quest?


The IgM 23 positive on the Igenex test means you have/had the bacteria in you....and since you have symptoms, you have active lyme.

So your Dr. never ruled out all the other 'diseases'? For me, the lyme diagnosis came after 14 months of symptoms and oodles and oodles of tests and specialist appts. to rule out autoimmune, MS, ALS, Parkinson's, thyroid, adrenals, etc. etc.
Finally the lyme diagnosis meant sense.

I think you can rest assured your symptoms are from lyme...but if it's really bothering you...maybe talk to your Dr. to rule out some of the more 'common' misdiagnoses for lyme.
Autoimmune can be done with blood tests.
I personally wouldn't bother with MS, Parkinson's, or ALS - since they go mainly by symptoms (and for MS - imaging of the brain) - and even if you are diagnosed with one of those...what is the cause? Lyme?
Posted 3/7/2018 6:51 PM (GMT 0)
Thanks Girlie for the reassurance.
My first naturopath, prior to lyme testing, diagnosed me with an "autoimmune reaction" due to high ANA (1:320), and its recently at 1:640. All other specific reflex autoimmune testing done for me was negative (thyroid, specific nuclear antigens, phospholipids).
I have not seen a doctor since I did that Quest western blot because at that point I decided to go a head with a self herbal treatment (Chronic tonic from misty meadows, which I then stopped).
I need to figure out in the next few days if I want to go to an LLMD, naturopath who is familiar with lyme, or just start another serious treatment myself. Insurance is going to be a big factor since I would need a referral to see an LLMD.
Posted 3/7/2018 10:40 PM (GMT 0)
Too bad LLMD's are not able to take insurance. I asked my regular doctor if she knew anything specifically about my LLMD. I told her I had an appointment with him the next week. I can't believe the look on her face. The kind of face like if I would have asked her out on a date or something. This was before I knew anything about the controversy. She immediately changed tune and was choosing words very very carefully. It was very strange. She didn't try to talk me out of the appointment, but definitely made me feel crazy.

I suspect your doctor is highly likely to recommend against visiting an LLMD. I doubt you will get a referral. Who knows you might get lucky though. Doctors receive IDSA published papers every year saying Lyme is easy to diagnose and treat and LLMD's are tricking patients out of their money. Which of course is utter BS.

I have had good luck on the LLMD path, so I typically recommend that path to people. The appointments have not costed me that much. It's the treatments that cost a lot. I just do what I can afford and skip out on some of the pricier ones.
Posted 3/8/2018 12:32 AM (GMT 0)
Thanks Missouri. Its really hard getting a referral even to a chiropractor so I am not sure how lucky i'll need to be to get a referral to an LLMD.
Right now I am reading on Dr. Rawl's program which seems nice since all supplements are in a ready format though as you mentioned it will get very expensive.
Posted 3/8/2018 2:31 PM (GMT 0)
Rawl's program costs way more than going through an LLMD for antibiotic treatments (mepron excluded). I am buying a loose herbal powder with an herbal blend similar to his for about 1/10 the cost of what he charges. I am a little skeptical. I have read his book and get his news letters, but I do not like the $300 per month price tag to get treatments.
Posted 3/8/2018 3:55 PM (GMT 0)
It is indeed very costy. How are the herbal treatment working for you? did you start antibiotics prior to that? Also would you mind showing me where you get your herbal blend.
Posted 3/8/2018 6:04 PM (GMT 0)

Immunity said...
Thanks Missouri. Its really hard getting a referral even to a chiropractor so I am not sure how lucky i'll need to be to get a referral to an LLMD.
Right now I am reading on Dr. Rawl's program which seems nice since all supplements are in a ready format though as you mentioned it will get very expensive.

You don't need a referral to a LLMD.
Posted 3/8/2018 6:06 PM (GMT 0)

Missouri said...
Rawl's program costs way more than going through an LLMD for antibiotic treatments (mepron excluded). I am buying a loose herbal powder with an herbal blend similar to his for about 1/10 the cost of what he charges. I am a little skeptical. I have read his book and get his news letters, but I do not like the $300 per month price tag to get treatments.

I wanted to know about Babesia treatment (or was it bart?) because I didn't see anything in his program that covered that coinfection.
The emails back were not helpful...many back and forth...and I can't even remember the final outcome...
they were very curt - I remember that...
I think the first two or three emails ...they pointed me in the direction of the core protocol - or whatever they call it...but it is for lyme and not bart or babs.

Not impressed.
Posted 3/8/2018 8:40 PM (GMT 0)

Immunity said...
It is indeed very costy. How are the herbal treatment working for you? did you start antibiotics prior to that? Also would you mind showing me where you get your herbal blend.

I have been doing antibiotics 7 1/2 months now. I added Samsara Tick Recovery herbal powder a couple months ago. I can't say for sure if the herbs have done anything. I have been nearly symptom free for the past 6 weeks or so.

The Samsara product is like 4 of the main Buhner herbs plus stevia. I buy it on Amazon
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