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Posted 5/16/2017 3:12 PM (GMT 0)
For about 2 months now i have been experiencing symptoms. This first started while i was at work, i got really dizzy, sweaty, weak, and faint. Initially i thought it was simply sugar, so i had some sugar and went about my day. However, since then i have been feeling pretty sick, like i have the flu. I have gone to the doctors numerous times; GP, neuro, endo, etc. None of them could find anything wrong with me. Here are my symptoms:

When it first started i had cold sweats and would tremble.


Now:

Achey muscles (mostly legs) but not sore to touch
Feeling weak/drained
muscle twitching all over
Tense jaw muscles
brain fog
headaches
feel jittery at times


I did have a Lyme test done but it came back negative. However, band 41 on the IGG came back reactive. I live in NJ so Lyme disease is definitely a possibility. There was also EPV and parvovirus in my system, but the tests say they are old infections. What do you guys think? confused

Post Edited (kev) : 5/16/2017 9:27:37 AM (GMT-6)

Posted 5/16/2017 3:34 PM (GMT 0)
My first lyme test was with Quest through my GP and I was negative.

I then got a lyme test from Igenex and had positive bands.
Posted 5/16/2017 5:40 PM (GMT 0)
Hi kev - welcome to our community!

Many of us with lyme have band 41 showing positive.

It is the flagella (tail) of a spirochetal infection - there are a few others' besides Borrelia it can be (one being periodontal disease)

You can retest with an Igenex Lyme WB Igm and IgG for total of $210. You just call Igenex and they will send you a test kit. Get a Dr. to sign the lab req, do a blood draw ...Fedex to Igenex...and three weeks later you get results.

www.igenex.com

Or...you can seek out a LLMD for an evaluation. To find one, start a new thread titled: "Looking for LLMD in/near____" and fill in the blank with the area you live in.

...or contact ILADS:

ilads.org/ilads_media/physician-referral/

You can also email me - I will check my lists and send you names I have for the area you are searching.

We encourage our new members to read through the information in the thread titled: "new to Lyme?..Start Here!" (The thread is at the top of Page 1)
Posted 5/16/2017 6:51 PM (GMT 0)
Hi kev,

Welcome! But sorry you have to be here 😖. Getting Lyme to show up in a regular Lyme test is like finding a needle in haystack. Very unreliable, tons of false negatives. Like the others have said, Igenex is more reliable when it comes to testing. Also, there is another test on the market that will test for the DNA of Lyme and coinfections. It's called DNA Connexions. Tested through urine, it is highly sensitive and accurate as it's looking for DNA rather than antibodies. It's either there or not. I've had it done and so have a few on this forum. The results lined up exactly with my symptoms and what my LLMD suspected so I am confident with the test.
It sounds like Lyme and the fact that you've seen specialists who can't find anything wrong just adds to the likelihood. Add in the fact that you live in NJ and, well, all signs point to Lyme. But don't fear! The people on this forum are great and we'll get through it together. Be well smile
Posted 5/16/2017 7:04 PM (GMT 0)
Hello, so glad you found us.

Treat the symptoms, don't rely on test results.

Ask all the questions you need, we are here for you!
Posted 5/16/2017 8:29 PM (GMT 0)
The test most doctors use is inaccurate more than 50% of the time. I had a negative on that test too.

I strongly suggest finding a Lyme Literate Doctor (LLMD) in your area. They can help you get properly diagnosed.
Posted 5/16/2017 9:21 PM (GMT 0)
Lyme is definitely a possibility. My first test only showed 41 as well.
Posted 5/16/2017 11:52 PM (GMT 0)
I'm praying I'm not too late with catching this. The symptoms started 7 weeks ago...sigh....

Anyway I have an appointment with a LLMD this Thursday and she doesn't take insurance so the visit is going to cost me 400$.. Apparently she is one of the founders of International Lyme and Associated Diseases Society and served 2 terms as it's president.

Post Edited By Moderator (Girlie) : 5/16/2017 7:02:30 PM (GMT-6)

Posted 5/17/2017 1:03 AM (GMT 0)
Kev - I edited your post to remove the LLMD's name. We want to protect our LLMD's.
Posted 5/17/2017 2:27 AM (GMT 0)
Welcome kev ...consider the dna connexions test...band 41 means flagella and if you dont have syphalis or leptospirosis then it has to be borrelia
Posted 5/17/2017 11:31 AM (GMT 0)
Hi kev -

Unfortunately, I agree with the other posts - you should seek additional testing and your LLMD should also be able to clinically diagnose you. Sure sound like Lyme sx to me.

Here is a symptom list to help you organize and prepare for your appt - bring this with you or even better - mail it in advance of your appt.
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

And...your sx also sound like hypoglycemic responses as well so you might investigate that, as well.

-p
Posted 5/17/2017 2:03 PM (GMT 0)
Hi Kev!
Welcome to our community! I'm so glad you found us.

If you haven't yet, please do read through our "New to Lyme" thread as it's packed full of helpful and important information.

I agree with the others that Lyme is a real possibility when Band 41 shows up.

Be sure to let us know how your appt goes!
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