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Do I have Lyme? I hear yes and no.

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Posted 10/23/2013 1:27 AM (GMT 0)
 I have been sick for over a year. I finally went to a ND to see if she could help because my Doctor's couldn't.  She tested me for Lyme and when the results came back, she said I did, in fact, have Lyme.  I took the paperwork to my Primary Care and he says that I do not.  Can someone shed some light? Here is the lab results:

Western Blot -

All IgG - ABSENT

IgM p23 - Present

according to my PC, I don't have enough criteria.  So why would one band be positive? Is this just random??

Any help would be appreciated as I am so confused.  thank you.

Posted 10/23/2013 2:33 AM (GMT 0)
Band 23 is specific for Lyme which means nothing else would trigger that antibody response causing it to come up positive. Many here just have that band and indeed have Lyme.

What are your symptoms? What lab did you test through? Chances are you would have more bands come up positive or reactive if you tested through IGeneX. That lab has the best test for Lyme. Welcome to our group.
Posted 10/23/2013 2:37 AM (GMT 0)
I'm pretty sure band 23 is specific to Lyme bacteria. Hopefully others will chime in with more info.
Posted 10/23/2013 3:24 AM (GMT 0)
Hey, I definitely think you should ask to get tested again. If you have been tested for Band 23 then it is weird they would say you don't have it. You can get tested for ELISA and IFA, but when you get the Western blot it confirms both of those tests. What are the symptoms that you have with this?

Monalisa
Posted 10/23/2013 3:55 AM (GMT 0)
The infectious disease dr and PC said I didn't have enough positive bands, per the CDC, to have lyme. I asked why band 23 was positive and no one could give me a straight answer. They also said because I never had bulls eye rash or known tick bite, I don't have it.

I keep getting full body rashes that look like shingles. I have lower back and hip pain that comes and goes, but when its active, I can barely get out of bed. I can't remember one thing from the next and the fatigue is incredible. Every 4-6 weeks, I get what seems to be the flu for about four days.

The infectious disease dr said that those are not symptoms of Lyme and I should have a chronic infection, meningitis, or nerve issues.

I'm so confused.
Posted 10/23/2013 7:28 AM (GMT 0)
HMMMM. That's weird. Have you gotten any other tests done? Besides checking for lyme disease? I was just wondering if you got your thyroid checked? Thyroid problems can cause rashes, extreme fatigue, memory loss and joint pain. Just a thought.

Monalisa.
Posted 10/23/2013 9:49 AM (GMT 0)
Hi Tally,

Your symptoms sound very much like Lyme. It is very easy to miss a tick, especially a nymph tick. Mosquitos and other vectors can spread the Lyme bacteria as well.

The general testing for Lyme is unreliable. The fact you test positive for Band 23 is a red flag. It's Lyme specific.

Have you checked out the "New To Lyme" thread?

Keep posting, okay? We are here to help you.
Posted 10/23/2013 10:00 AM (GMT 0)
Hi Tally,

Please look for a LLMD in your area. Your test is absolutely positive. Having Lyme, you don't want to stay with an ID dr, but a Lyme specialist.

You can start a new thread like 'Looking for LLMD in _____', and enable your email address under My Profile / Edit Profile / Show my E-mail address. Members on the forum will send you pm's with names and information about their LLMD's or other LLMD's they know. We have to do this by pm, cause we're not allowed to post dr's names on the forum.

Good luck!

MarieLS

Posted 10/23/2013 1:18 PM (GMT 0)
Thank you all so much for your replies! I've actually had thyroid disease for ten years, but within the last year, it has gone completely out of control and I kknow have several conflicting thyroid diseases. I've also just tested positive for Celiac disease.

I'm going to find and LLMD today and check out all of the posts on this website so I can understand this more.

I can't figure out which symptoms are from Lyme or thyroid. I have some back/hip pain occasionally, swollen glands in throat, and exhaustion.
Posted 10/23/2013 2:39 PM (GMT 0)
Sounds like Lyme to me which can cause lots of thyroid issues. Honestly with your symptoms and a positive band 23 there really is no need to question the Lyme diagnosis. You also have co-infections. Rashes and swollen glands are usually Bartonella which comes along for the ride with Lyme and recurrent flu-like symptoms usually Babesia which is a parasite not as common as Bartonella but still very common with tick-borne illness. Do you have any day or night sweats?
Posted 10/23/2013 2:55 PM (GMT 0)
Yes! I sometimes wake up in the middle of the night drenched! I am burning hot in the morning and evening. I just don't know if its Lyme or thyroid. When I'm really hot, my temp is usually around 97.1. I'm a hot mess. My nd is aggressively treating my thyroid and hoping to reverse the issues.
Posted 10/23/2013 4:01 PM (GMT 0)
Hi TallyFL!
Welcome to our community!! As you can see, we are all here to help those who find us! :-)

Please check out our "New to Lyme? Start here!" thread as it has symptom lists (and tons of great info!!) for some of the other more common tick-borne diseases as well. Those sweats could easily be from Babesia.

As has been said already, thyroid issues are fairly common with Lyme and it's usually Hashimoto's thyroiditis. If you have Lyme (which there's really little doubt), your ND won't be able to heal your thyroid until the Lyme and other infections are taken care of.

Low body temps are common with many bacterial infections - bacteria and viruses are killed by high heat, so they can actually keep the metabolism lowered enough to keep your body temp low. My temp didn't return to 98.6 until I had completed all of my treatments.
Posted 10/23/2013 4:40 PM (GMT 0)
The drenching night sweats is Babesia so you will be probably at some point be put on Mepron with Zithromax which is the standard treatment for Babs though there are others. Think Malaria type symptoms..sweats, chills, etc. All Babesia but I'm sure you have Lyme, Bart and maybe others as well.
Posted 10/23/2013 5:28 PM (GMT 0)
Thanks! I'm so glad I found this forum. I'm going to go sit down and comb through all of the threads. I'm sure I'll find this answer, but I'm going to ask now bc I'm panicking. My right hand is trembling when I out it on my lap or on a surface. Is this a symptom of Lyme?
Posted 10/23/2013 10:14 PM (GMT 0)
That's know as an intentional tremor, and yes, it can be symptom of Lyme disease. I always giggled when that would happen once I learned the name of it - intentional tremor. Like I wanted the thing!!! I would suggest that you refer to the 'Master symptom list' for Lyme that's listed in the "New to Lyme? thread when you have a new symptom or if you just want to check on another symptom. There are also symptom lists for Bartonella and Babesia as well.

And we are glad that you found us too! :-)
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