I will try and be as brief as possible and I will thank everyone in advance for their time and review/comments.
I live in Tennessee and did find a tick on me 2 1/2 years ago.
I started having symptoms 2 years ago.
Started with flu like feeling - tired, fatigue, muscle aches and strange feeling in right side of my face.
Progressed to burning streaks (fast burning feelings that last only a second or two and then stops) in all parts of my body except face. Also pain in right foot to big toe and ankle. Tingling in right foot and ankle. Muscle twitching in all sorts of places but always in my right foot and calve muscles. I have a strange feeling in my face from my right eye down to my lip (sometimes the corner of my right lips feels numb but it really isn't.) Also feels like tingling in my right side of face.
The symptoms that I have every day are -
- Tingling in right foot. - Strange feeling in right side of face. - Muscle twitching - some random places but in my right foot and calve muscles every day. - Burning streaks in my body.
Now I have been to 3 Neuros and 2 regular MDs. I have had 2 MRIs, 2 EMGs, ON test, Lunbar Puncture, EEG, Evoked Potentials and more blood that I can list. They did regular LYME tests which were negative. The only test that has come back positive has been (what my doc say is an old infection) for Cytomegalovirus CMV and Epstein Barr EBV.
What do you all think?
Thank you so much for your time.
Posted by Lymetoo (Member # 743) on :
I think you need to locate a good LLMD [Lyme Literate MD] and get a Western Blot test thru Igenex Labs in CA.
If possible, you MIGHT be able to convince your PCP to order the test.
Hi, I am a relatively new here and I know others with more experience will jump in soon. A few comments
1) You had a tick bite followed by symptoms consistent with lyme. That makes it highly suspicious that you have lyme.
2) No other diagnosis has been obtained although you have seen specialists and had a number of tests.
3)The validity of the lyme test varies widely depending on type (ELISA versus Western Blot for example) and what lab is used. The false negatives for all of these tests is fairly high.
What test did you have done and through which lab? Most here would recommend a Lyme Western Blot from Igenex or MDL labs. The other labs are -well useless.
4)Lyme is a clinical diagnosis, based on symptoms and response to treatment. There are many who have lyme disease, have responded to treatment but had a negative western blot for lyme.
So, I would encourage you to find a lyme literate doctor who will look at the entire picture and run the appropriate test for lyme and coinfections.
Posting in the seeking doctor section would be a good start.
Posted by Lymetoo (Member # 743) on :
up
Posted by improver (Member # 8380) on :
I recall before testing positivr for lyme a couple of the ducks i went to told me my bloodwork showed signs of the epstien bar virus and it was going away...
Still never figured that one out....
I agree with lymetoo, a good llmd is the first step in the right direction. Good luck..
Posted by tic chick (Member # 9156) on :
ditto. Look for a Lyme Specialist over in Seeking Doctor section of this forum. Also read as much as you can from this site.
Good Luck, tic
Posted by jazzman62 (Member # 9871) on :
I've had all of your symptoms (minus the burning streaks) and started up on Ceftin 10 days ago (500mg twice a day). All of my Lyme tests came back negative, but I have a Lyme doctor who treats based on symptoms and the fact that Lyme is very prevalent in our area.
I had Lyme back in 1995 with completely different symptoms and failed the tests back then also, but after a month of doxycycline was rid of all the symptoms.
