Sudden loss of balance. Do I have Lyme?

Since July I have been sick with what I thought to be EBV(pain in throat and liver, immense fatigue). However a few months ago I came across lyme and I found myself saying "check" to many of the symptoms including a weird elongated red rash I had at the onset which could be EM. And some of the symptoms were not typical for EBV (ear ringing, karpal tunnel, pain in achilles).

Since then I have had several tests for Lyme. 3 elisas and one extended package which I paid for myself which included 3 special type of Elisas and two western blots. All negative, results are in a different post. I am fairly confident that if I do have Lyme antibodies are not being produced. One extended EBV test revealed that I had it more then a year ago and it did not reactivate.

However, my condition was slowly improving so I put Lyme out of my mind, untill about two weeks ago, when my balance was suddenly completely messed up, like I am on a boot the whole time. This was joined by a weird pinching feeling on the back of my head. and sting on my scalp. Soon after I had the smallest flu which lasted just 2 days (But I think it strained my immune system). However the headaches and drunk feeling have not cleared yet, and barely diminished. In addition my fatigue level is nearly the same as when my problems started. Especially the dizzyness is debilitating. So now I find myself looking for answers again. And I have become completely disillusioned with my GP.

Does anyone recognize this drunk feeling? and weird stinging headaches, could they be part of Lyme?
What is the chance that my immune system is supressed by Lyme or EBV?

Thanks in for your time, Stef

Post Edited (Cornelisz) : 2/3/2016 4:16:32 PM (GMT-7)

Welcome to our community, Cornelisz!

As Sarah said if you post your results..we can offer more help.

Cornelisz,

First welcome to the forum. Sorry for the reason you are here.

I'll give you my opinion and then afterwards, I will paste in a welcome from one of the moderators.

First the ELISA test is very useless. It misses about 90% of cases that eventually test positive for Lyme. So even though that is the first test your doctor will order, a negative test does not mean you don't have Lyme.

What lab did you have your Western Blots done at? The reason that Sarah asked about the results from the Western Blot is because the positive or negative result is really not reliable (or important). You need to get the results with each of the bands listed individually. The actual CDC criteria that most labs report is considered too narrow by some doctors. There is a lab in CA, Igenex, that reports more of the bands. The bands are important because some test positive only if you have been exposed to Lyme.

Yes, loss of balance is a symptom of Lyme. I was talking to my son and suddenly fell over. The world didn't tilt but bam I went over. Others have similar stories.

The other symptoms that you list are also symptoms. You should read the thread "New to Lyme?". It is always the first thread on the page. It has lots of information and explains things in detail.

So here is Traveler's welcome. There are some other moderators but there are many new posts everyday and they aren't able to answer every post. But if you have questions, add a new thread and people will chime in. A detailed title will help direct the right people to read your posts.

So really this is Travelre's welcome:

Trav's Welcome message - please feel free to copy and paste all or parts of it to share with others!

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


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) 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 Traveler an email by clicking on her screen name or the small blue envelope under her screen name. She 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 she will be happy to share the names that she has.


You can email the Tick-Borne Disease Alliance at medicalinfo@tbdalliance.org​ 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

Let us know how we can help,
Kim

Stef, it's a very active community but the credit belongs to others. I just passed on information that other's passed on. Most of my post was from Traveler.

There are definitely other Europeans on the forum. If you start a post "looking for an LLMD near (Amsterdam or what is close to you)", someone near there will contact you if they can help. The moderators might know better who could help. Traveler, Girlie, Mister Mike, and others are moderators for the forum.

Good Luck,
Kim

Cornelisz - Are you able to travel to either Germany or Belgium?

If so, send me an email...and i will send you the information I have.

And I can also get in touch with another Moderator who may have some Dr.'s to recommend.