Lyme Disease

[misstraci]

Do you or did you have lyme disease? Were you diagnosed on the first test or did it take multiple testings? If you took antibiotics did it heal your symptoms?

Thanks

Traci

[HopeSprings]

No, but it's one of my top suspects. It's my understanding that Lyme testing can be inaccurate. I was bitten twice by ticks the summer before my problems began and the symptoms match very well with Lyme disease. If I found out tomorrow this was Lyme all along, I would not be surprised. Hoping better testing will be developed in the near future.

[misstraci]

naomi.... me too. I suspect i may have it and i know i was also bitten, once and probably other. well, i'm having a hard time finding a doctor for it here where i live and like you say, testing is unreliable. i'd be willing to do the months worth of antibiotics even though i wasn't definately diagnosed, i take it in hopes that that was it even.

[skiberthoud]

I went down the whole Lyme route. I had testing through Igenix and Neuroscience Labs. Both tests came out equivocal. Testing alone cannot diagnose lyme. Results along with the clinical manifestations and history as seen by an experienced lyme literate doctor is what can make the diagnosis. Though my test results were questionably positive, my LLMD does not believe Lyme is my issue. I'm grateful! I believe that Lyme is very real and very under diagnosed. I hope that if you are seriously questioning this diagnosis for yourself that you do your research and really find someone that can help you.

[Katybug]

I had Babesiosis and suspected Lyme (and suspected Bartonella although my tests for this were neg.). I tested positive for Babesia (a Lyme co-infection) and never tested positive for Lyme itself. However, it is really unusual to have a co-infection and not have Lyme. So, I found a Lyme Literate Doctor through ILADS and I was treated by the Lyme Literate Doc that follows treatment guidelines written by Dr Burrascano (sp?) ( http://www.ilads.org...es_12_17_08.pdf). It helped quite a bit with a lot of my symptoms, however, some of those symptoms have returned over the years and now the POTS is at the fore-front of the issues. The ILADS website is the most informative Lyme site I have found and does a great job of explaining the great divide in the medical community concerning diagnosis, treatment, and post-Lyme syndrome vs. chronic Lyme disease.

You may also want to check out what this doc, Dr. Shoemaker, has to say about Lyme and chronc illness. http://www.betterhea...r-video-on-lyme This video is well worth the 5 minutes to watch.

Lyme is so complicated and so political right now and we as patients are suffering the consequences of the medical community not getting its act together on this subject. My PCP gave me 6 weeks of antibiotics and acted like I asked him for crack when I said I wanted more because each week on the antibiotics I was still feeling improvement. That's why I had to find a LLMD. She had me on an antibiotic cocktail for almost a year and it made a huge difference. The catch is (at least here in Maryland), the only LLMDs I cold find did not accept ANY insurance. Because they all schedule lots of time for each appt since Lyme is such a complicated disease (my doc scheduled 2 hrs. for an initial visit and 1 hr for each follow up visit), it is not worth it for them to take insurance. I can't afford to go back to one of these docs at this point. It's a shame because she was one of the best docs I've known. And, she made sure she ruled out anything that might have similar symptomology as well. She didn't just throw antibiotics at me hap-hazardly.

[misstraci]

tablet, thank you. I'm glad for you that it turned out not to be lyme. You're so right about it being real and underdiagnosed.

katybug, thank you for writing. sorry you have/had Babesiosis and suspected Lyme. Glad things got at least a little better with that but now your POTS is acting up. Did you have POTS prior to your lyme or was it because of it you think? I appreciate you taking the time to write and explain to me, I'm going to go watch that video and check out your other link. Situations like this make me really irritated at the medical community, for not accepting certain illnesses as opposed to others, that is sort of like discriminating.

[nunntrio]

I tested positive (IGG only with a few IGM bands) and was treated for Lyme with about 4 month of IV antibiotics and another 10 months of orals. The antibiotics helped greatly, however I am by no means cured. I stopped taking the antibiotics because I stopped seeing improvement. I have not gotten any worse off the antibiotics so I am assuming the syptoms I have left (POTS) must be damage from the LYME. Notice I said assumed. Some believe you can have chronic Lyme. I really do not know. For me, if antibiotics were readily avavilable I would take some but I have to travel to get to a LLMD. It is not easy. I do still struggle greatly with POTS but I can say that before the antibiotics I was not functional.

[Katybug]

misstraci - I had subtle symptoms of autonomic dysfunction since I was a little kid but other than occassional GI flare ups, none of my symptoms were debilitating until I had tick-borne illness. It seemed to push my body over the edge.

nunntrio - Sorry to hear you are dealing with continued issues. It really is a very complicated disease to treat. I stopped my antibiotics when I plateaued and didn't see any further improvement. It's a hard decision. Hope you find improvement somehow.