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Posted 6/19/2018 12:54 PM (GMT 0)
I am new here but am desperately seeking answers for my son. He has been dealing with "whatever this is" for almost 4 years now. We originally thought it was allergies as he discovered he has severe allergies to most things (mold, dust, dog hair, etc, ). Long story short, I have suspected Lymes all along. My degree is in lab science so I fully understand that not all lab results are accurate. He went to Mayo Clinic and after 10 days there, he was given a diagnosis of chronic fatigue. I don't buy it.

My question for this group is- Are there labs other than IGeneX that can give a reliable Western Blot result for Lymes? The clinic he is going to in Atlanta said that IGeneX is not covered under insurance and thus far have not even ordered any Lyme testing other than the CD57- which was high.
I just want to know the best test and a reliable lab to have the Western Blot done so we can demand that it is done.
This is all so very frustrating and heart breaking.
BTW- He is 31 years old.
Posted 6/19/2018 2:10 PM (GMT 0)
Welcome to our community!


He can be tested with whatever lab the insurance covers first and then try another lab after if needed.

Or just pay the $250 for the Igenex Lyme WB
Posted 6/19/2018 3:47 PM (GMT 0)
Girlie, does the Igenex Lyme test cover co-infections or are those a separate cost? Do you know if you have to take the kit they send to your LLMD or can you have someone do your blood draw? my LLMD said she couldnt order the lab through Igenex but I have 2 nurses in my family who can do a blood draw if I can do it that way.
thx!
Posted 6/19/2018 3:57 PM (GMT 0)
IGeneX has different panels that cover co-infections and they are all listed on their website with prices. The more test, then the more cost is, of course. Im not sure about the blood draw. They do ahve draw place options listed on their website but Im sure anyone could draw it if they know how.
Posted 6/19/2018 5:05 PM (GMT 0)
I do not believe you can rely on a "positive" or "negative" interpretation from any lab including Igenex. I had 2 bands on a Lapcorp Western Blot and 4 on an Igenex in the same week. Both are interpreted "negative".

The CDC wants 5 bands to be counted in their national reporting. That's the problem, we do not care about national reporting case counts. We worried about our own / own family's lives.

From what I understand Igenex tests against multiple strains of B. Burgdorferi. Quest and Labcorp only use the lab cultured B31 strain that is from the Northeast.

NO test reliably picks up Borrelia Mayonii, Borrelia Lonestari, Borrelia Andersonii

You will probably have to pay for Igenex out of pocket, but that is probably the best course of action for you.

You should get him to a proper LLMD for evaluation.
Posted 6/19/2018 5:17 PM (GMT 0)
Hi laudie!

And hello fellow scientist! These are pretty bad test in general. I would opt for the Igenex only b/c it is the most widely accepted by LLMD's. If you suspect lyme-follow your gut and find an llmd (we can help), nd, or herbalist that can help.

I honestly didn't even know I had 'fatigue' with this until I recovered and then I was like "Holy cow" - could not believe all this symptoms I had went unnoticed until I got better. (Denial much, yup). All my test from regular labs came back negative...and I had a tick bite with a bulls eye rash. Igenex came back I think...4 bands? Truthfully I don't remember.

I would argue if I could get one test I would opt for PCR but that is because I am a PCR girl. The bottom line is as you said none of the tests are accurate. Too many doctors put so much faith in bloodwork.

~beth
Posted 6/19/2018 5:45 PM (GMT 0)
Please help us find a LLMD in our area. We live in birmingham, AL
Posted 6/19/2018 5:54 PM (GMT 0)

Lovemy3 said...
Girlie, does the Igenex Lyme test cover co-infections or are those a separate cost? Do you know if you have to take the kit they send to your LLMD or can you have someone do your blood draw? my LLMD said she couldnt order the lab through Igenex but I have 2 nurses in my family who can do a blood draw if I can do it that way.
thx!

The coinfections are a separate cost. But, many of us just get the Lyme test...and then see a LLMD with the results of that test.
If money is tight, you could start there - with just the Igenex Lyme WB.

You can call Igenex and they will send you the test kit. Then you get a Dr. to sign the lab req.
Then get the blood drawn, and send it to Igenex.

Any Dr. can sign though - including a ND or a Chiropractor.

There is also a lab that you can use if you can't get a Dr. to sign

/www.truehealthlabs.com

You order the test online - and then go to one of the labs they have listed. I'm not sure if these labs are in all States though.
Posted 6/19/2018 6:34 PM (GMT 0)
HI laudie,

If you go to this site...

http://ilads.org/ilads_media/physician-referral/


and put in your information, you will get the 3 closest physicians to you that are affiliated with ilads. There is also this facebook page...

https://www.facebook.com/AlabamaLymeDisease/

Where hopefully you can connect with some others and get referrals from folks who have used drs. down there.

~beth
Posted 6/19/2018 8:19 PM (GMT 0)
Thank you for this information. I think we are going to try and get doctor to sign off on the Western Blot and PCR at IGeneX. And while we are waiting, we will seek out a LLMD and try and get an appointment. He has been seeing a chiropractor that practices homeopathic med for about 6 months now and she has been using the NAET treatment and BEMER therapy- but so far he has not seen any progress.
Anyone have any experience with either of these treatments?
Posted 6/19/2018 8:41 PM (GMT 0)
You said his CD 57 was high. With Lyme, it is usually low.

Has he been evaluated for CIRS? He could have that with or without Lyme.

/www.survivingmold.com/diagnosis/lab-tests

Google CIRS and you can pull up a pdf explaining it.
Posted 6/19/2018 8:57 PM (GMT 0)
Ill look into CIRS- thanks! The high CD57 could mean that he doesn't have Lymes. His % was high but the absolute count was normal- so to completely rule out Lymes, I think we need the Western Blot test.
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