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Convinced I have Lyme but test says otherwise, also seeking NY State LLMD doc

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Posted 8/15/2016 7:11 PM (GMT 0)
I was bit by a tick April 2015, accidentally removed it by squishing it and ripping it off (didn't know it was a tick, thought it was a tiny skin tag on my back while taking a shower). No rash. But since then have had so many symptoms that I've been to my PCP and 4 specialists for various tests. Was tested for Lyme last year and demanded new test last week. Positive on IgG 41 and 58 only. Completed the MSIDS and was pos for 29 of 38 items, some symptoms are quite severe. A rheumatologist has tried 4 different anti-inflammatory meds, including Enbrel, with no positive results (and I wonder if being on Enbrel for 5mos impacted my immunoresponse to Lyme incl not creating antibodies to fight the infection??). Also placed on antibiotics a few times for various issues, wondering if that could impact my WB results??

Any feedback re: pos IgG 41 and 58 results??

Also seeking LLMD in NY State.

Please help. I am so frustrated and depressed about my results. I NEEDED them to positive so I could pursue an appropriate course of treatment. But of course nothing can be easy.

Post Edited (Colleenk51) : 8/15/2016 1:49:38 PM (GMT-6)

Posted 8/15/2016 7:21 PM (GMT 0)
Welcome, Colleenk!

I'm sorry for the reason you are here...but glad you found us...this is a great group of people - lots of knowledge, and support here.

I'm wondering why you want to test through a non-Igenex lab? Your best chance is using Igenex IMO.

I believe Enbrel has immune suppressing effects - and that would reduce your chances of creating antibodies - as you suspected.

Band 41 is a bacteria with flagella (a tail) and can be lyme, but something else as well. Most of us with lyme do have band 41 positive.
Sorry, I'm not sure about 58

I suggest you edit your title of this thread to include NY State to narrow things down.

Since you are new here, it would be helpful for you to read through the thread at the top of the page titled: "New to Lyme?..Start here!"
It's packed full of useful information.

the fact that you were bit by a tick, with subsequent symptoms is enough for a LLMD to diagnose you with LD.


Good luck!
Posted 8/15/2016 7:52 PM (GMT 0)
Sorry for the confusion, I didn't demand to be tested at a non-IgeneX lab but rather demanded to be tested and it was submitted to a local lab which happens not to be IgeneX. I deleted that to reduce confusion.

Recommendations on how to find a LLMD? Is this something that can be requested from my insurance company??
Posted 8/15/2016 7:56 PM (GMT 0)
With the title of your thread...hopefully you will get some recommendations from forum members.

In addition to that, you can contact the ILADS Physician Referral:

ilads.org/ilads_media/physician-referral/


It would be helpful if you enabled your email option so members can send you names of LLMD"s privately. We don't post their names on the forum.

You can enable your email option through "My Profile" (top blue bar on the left)
Posted 8/18/2016 2:36 AM (GMT 0)
many of us go through the same. regular PCP orders test and it's negative.. I had to demand a retest through Igenex, literally handed him the requisition filled out. came back positive.

In short, find an LLMD and retest if necesary. given the tick history he/she would probably start treatment on the spot.
Posted 8/18/2016 12:51 PM (GMT 0)
Welcome Colleenk!

Sorry to hear of another member in the Lyme club. However, you've come to the right place for support and information.

Unfortunately, insurance companies are most likely to refer you to an Infectious Disease specialist. It's very unlikely you'd get a diagnosis or proper treatment from an ID doc. ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme.

Most ILADS-trained LLMD's don't accept insurance because many insurance companies won't pay for the protracted treatment necessary for us to heal.

Best wishes to you moving forward!!
Posted 8/18/2016 1:03 PM (GMT 0)
Forgot to mention,

I have a list of LLMD's in NY that I'm willing to share.

It would be best if you could email me and let me know the area codes within the distance you're willing to travel.
Posted 8/18/2016 2:23 PM (GMT 0)
Hello Colleen and welcome to the forum! I am so glad you decided to join because you may have a lot of questions going forward and this is the best place to come for advice. It has helped me immensely.

The Igenix lab specializes in Lyme and is the best place to go for the test.
You will want to order the Western Blot #188 and #189. Unfortunately Igenix does not take insurance, but you can submit it to your insurance company yourself. Mine did not pay it but did deduct it from my deductable. It cost $210.

Here is some information to use to contact them.


IGeneX, Inc.
795 San Antonio Rd
Palo Alto, CA 94303

800.832.3200
650.424.1191
650.424.1196 Fax
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