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Posted 3/11/2018 11:58 AM (GMT 0)
Hi everyone,

I’m hopeful to find some help here as I’m not sure what to do. I’ve been having weird symptoms for over 4 months. Symptoms Include the following (in order)
- upper lip began twitching
- pain along the back of my left leg from my glute to my foot
- dizziness, vertigo and hearing loss in one ear
- random muscle twitching widespread - mostly in calves
- swelling and numbness in tongue
- numbness feeling in face

I’ve been to many docs, including my neuro multiple times. He advised he doesn’t think it’s nuerological because I dont have any weakness, besides the muscle twitching. He did an EMG which was normal.

All of the above symptoms remain now, besides the vertigo. I recently went to a Lyme literate doc locally who did a bunch of blood work. I had Previously had a negative Lyme test done by my primary doc through Lab Corp.

The three Lyme tests were done by Lab Corp, IgeneX and Medical Diagnostics Lab. The Medical Diagnostic results showed IgM positive on bands 39 and 41. And IgG band positive on 34 only. Although other bands showed some reaction including 23 and 41. IgeneX showed some reactions but not a positive result. And Lab Corp was negative. My local Lyme doc said I do have Lyme and prescribed antibiotics.

Is this Lyme considering I’ve had these symptoms for so long? I really need some help with this as I dont know what else it could be. Any thoughts or guidance is greatly appreciated. Thank you!
Posted 3/11/2018 3:09 PM (GMT 0)
One of my main questions is the accuracy of both Medical Diagnostic Labs and IgeneX. If i could get confirmation that members believe these labs to be very credible, that would be great. Also, do the above symptoms match neuro Lyme?
Posted 3/11/2018 4:01 PM (GMT 0)
Hi Jric, someone more knowledgeable than me should answer your questions soon. Just wanted to say hi. Check out New to Lyme at the top of the board. Hope you feel better soon.
Posted 3/11/2018 4:28 PM (GMT 0)
Igenex is considered highly reputable. I've never heard of the other lab. Can you post the results of the bands from Igenex?
Posted 3/11/2018 5:53 PM (GMT 0)
Thank you both for the replies. I was IgM positive for bands 39 and 41 from both IgeneX and Medical Diagnostics (NJ based lab). Also IgG positive 34. But didn’t have the 5 bands to confirm IgG. However Medical Diagnostics did show reactions to IgG bands 23 and 41.

My primary didn’t like that i was negative with the Lab corp test. But I’ve heard they aren’t as reliable.

I’ve had symptoms for over 4 months. I’m just hopeful to confirm this is sufficient results for Lyme. Any help or advice is appreciated!
Posted 3/11/2018 6:37 PM (GMT 0)

Jric8 said...
Hi everyone,

I’m hopeful to find some help here as I’m not sure what to do. I’ve been having weird symptoms for over 4 months. Symptoms Include the following (in order)
- upper lip began twitching
- pain along the back of my left leg from my glute to my foot
- dizziness, vertigo and hearing loss in one ear
- random muscle twitching widespread - mostly in calves
- swelling and numbness in tongue
- numbness feeling in face

I’ve been to many docs, including my neuro multiple times. He advised he doesn’t think it’s nuerological because I dont have any weakness, besides the muscle twitching. He did an EMG which was normal.

All of the above symptoms remain now, besides the vertigo. I recently went to a Lyme literate doc locally who did a bunch of blood work. I had Previously had a negative Lyme test done by my primary doc through Lab Corp.

The three Lyme tests were done by Lab Corp, IgeneX and Medical Diagnostics Lab. The Medical Diagnostic results showed IgM positive on bands 39 and 41. And IgG band positive on 34 only. Although other bands showed some reaction including 23 and 41. IgeneX showed some reactions but not a positive result. And Lab Corp was negative. My local Lyme doc said I do have Lyme and prescribed antibiotics.

Is this Lyme considering I’ve had these symptoms for so long? I really need some help with this as I dont know what else it could be. Any thoughts or guidance is greatly appreciated. Thank you!

Hi Jric8 - welcome!

Those symptoms can surely be lyme disease. I had both an EMG and a NCS and the Physiatrist/Neurologist/Neurosurgeon thought everything was just fine. I had twitching, weakness, tremors...etc. and LOTS of pain. But I certainly wasn't 'just fine'.
Morons.
LabCorp isn't a reliable/accurate test for Lyme disease - not surprised you were negative.
Bands 23, 34 and 39 are lyme specific.

Igenex specializes in Tick-born disease testing...Lab Corp doesn't.
Posted 3/11/2018 6:39 PM (GMT 0)

Jric8 said...
Thank you both for the replies. I was IgM positive for bands 39 and 41 from both IgeneX and Medical Diagnostics (NJ based lab). Also IgG positive 34. But didn’t have the 5 bands to confirm IgG. However Medical Diagnostics did show reactions to IgG bands 23 and 41.

My primary didn’t like that i was negative with the Lab corp test. But I’ve heard they aren’t as reliable.

I’ve had symptoms for over 4 months. I’m just hopeful to confirm this is sufficient results for Lyme. Any help or advice is appreciated!

You do have an IgM positive with Igenex - no need to question it....as it backs up your symptoms and clinical diagnosis of lyme.

maybe inform your Dr. that Lab corp doesn't specialize in tick-borne disease testing, but Igenex does.
(although, if he's got a certain mind-set...that probably won't mean much)

The best Dr. to see is a Lyme Literate one...as they are the specialists when it comes to diagnosing and treating Lyme disease.

We can help you find a LLMD - just start a new thread: "looking for LLMD in/near____" and fill in the blank with the city near you.

You can also email me and I will check my list of LLMD"s and send you names.
Posted 3/11/2018 7:46 PM (GMT 0)

Jric8 said...
Thank you both for the replies. I was IgM positive for bands 39 and 41 from both IgeneX and Medical Diagnostics (NJ based lab). Also IgG positive 34. But didn’t have the 5 bands to confirm IgG. However Medical Diagnostics did show reactions to IgG bands 23 and 41.

My primary didn’t like that i was negative with the Lab corp test. But I’ve heard they aren’t as reliable.

I’ve had symptoms for over 4 months. I’m just hopeful to confirm this is sufficient results for Lyme. Any help or advice is appreciated!

Here's a paper from 1989 that discusses the deficiencies in testing, and here are criticisms of the CDC criteria. The short of it is that the CDC wants to minimize false positives by interpreting the test very conservatively, and that leads to people getting negative results when they are infected.
Posted 3/11/2018 9:35 PM (GMT 0)
Hi and welcome to our forum,
Glad you have found us but sorry that you have Lyme.

Your story sounds like so many others here and its important to begin treatment.

We do encourage new members to read our"New to Lyme"start here thread. Its at he top of the page. it has so much helpful information on Lyme, detoxing, symptoms , testing and more.

Feel free to ask any questions you need to or just reach out to us if you need support or encouragement.

Take care and I wish you the best of healing, Jo
Posted 3/11/2018 9:50 PM (GMT 0)
Hi Jric8, welcome to the forum smile Have you ever had a stroke?
Posted 3/11/2018 10:06 PM (GMT 0)
Thanks everyone for the kind words and guidance. I will definitely research the new to Lyme thread, as well as the articles specific to Lyme. Thank you all again. If there’s any other guidance please let me know. Would my swollen and numb tongue be related to Lyme? If so, are there any remedies to help? There’s a slight white coating on it as Well. I’ve never had any neurological issues before including a stroke.

Girlie - i will email you with where I’m located to see if you have any recommendations for a Lyme doc. Thank you!!
Posted 3/11/2018 11:45 PM (GMT 0)
A swollen, numb tongue - yes, certainly could be a lyme symptom.

While I didn't have a numb tongue...my left cheek had a numb feeling to it for awhile (a few months) and then it was sore for a few months...that has subsided with treatment.

Sorry, i have been busy so haven't checked my emails in the past few hours..
I will soon though.
Posted 3/12/2018 12:07 AM (GMT 0)
The white tongue may be candida/yeast infection.

In our new to Lyme page there is a lot of information on that.
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