Lyme Question

Hey all!

I will try to condense what is sort of a long story. I have a fairly large exposure to ticks both at work and in my extracurricular activities. A few years ago (2013), I got a CLASSIC Lyme rash after getting bit by a tick at work. I got was put on Doxy for 21 days. Ironically, My Elisa test came back negative that time, but the the rash was unmistakable.

Here is a pic of my original rash in 2013:
i257.photobucket.com/albums/hh233/sontavas/Ring2_small.jpg

Fast forward to now. For the past 2 months, I have been experiencing a host of very strange issues. Numbness in my left jaw, left hand and left foot, Stomachaches, chronic muscle pain in my neck/shoulder/chest, super stiff neck, and a huge amount of burping. All of these symptoms do not happen all the time, but there is something there all the time. For instance, right now I am not numb, but my neck is so stiff its unbelievable and at various points in the day my stomach just starts throbbing for 60 seconds.

I have been put through the ringer with tests. Multiple blood tests, Stress tests, Cardiac ultrasounds, Brain MRI, Cervical Spine MRI (next week), multiple EKGs; they are all normal. I was give a western blot test (labcorp) and only tested positive for one band (IgG p41 Ab). My doctor has basically said that he thinks there is something wrong with me but he cant figure out what it is and he thinks it will basically go away on its own over time.

Are these symptoms consistent with Lyme? Is it possible that I may still have Lyme from 2013 or that I may have been reinfected (which is possible because I get bit by ticks often). I am in Maryland and any information that you all could provide would be greatly appreciated.

Thanks!!

Post Edited (sontavas) : 2/25/2016 10:14:23 AM (GMT-7)

Hi Sontavas!
Welcome to our community!! I'm so glad you found us.

That's quite an impressive bulls eye rash! 21 days is simply not enough treatment, unfortunately. It's very common for the tests to come back negative if the infection is less than 4 - 6 weeks old because the body hasn't had enough time to make antibodies for the bacteria by then. But the ELISA misses up to 70% of those with the actual infection anyway - the Western Blot misses up to 50% of those with the actual infection - so you can see why so many are undiagnosed by these tests.

Yes, Lyme can most certainly cause all of those symptoms, especially since your tests are all coming back as "all clear" and the symptoms are moving around. This is one of the most common things of Lyme.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

You will need to see an ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in order to get the evaluation and treatment needed. For information on finding one in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php

CD- are you going to be "Queen of Links2"? LOL!!!

I don't have any explanation for the improvement of symptoms after a big meal, other than alleviating a possible issue with not getting enough nutrients (leaky gut type of issue), but the feeling great while exercising and then 'crashing' is called exercise intolerance. When we have exercise intolerance, we have to lower the intensity of the exercise. The exercising is likely killing some of the bacteria (from raising the body temp.) and this is causing the symptoms (herxing) to increase afterwards for the 24 - 36 hours. Exercising is good for us, but everything has to be done in moderation for now.

And as for feeling great while you are running, that's likely due to endorphins being released during exercising.