ok, so i have been dealing with "lyme like" symptoms for the past 5 months all starting out the first 2 months as bad "tmj" symptoms and headaches, then moving more to the traditional lyme symptoms. I have been to multiple dr's, pcp, ent, oral surgeons, rheumatologist, neurologists.... No one can find anything wrong with me and my pcp as most of you wont go any furthur since he got the results he was concerned about, neg, baseline tests. So i guess what im trying to say is, how, if not recalling ever being or having a bite, or rash can i be sure this is lyme and get it into my head so i can accept and continue treatment. I am currently seeing an llmd, 1 appt so far and he didnt really say yes or no to having lyme, just that it is very characteristic, and i am on tetracycline only, got 4 months worth of script so far and gonna be following up around the holidays with him. i guess its just i dont want to accept its lyme yet cause i feel like it could be other things as well and i dont want to leave other things out of the picture. But my symptoms are very characteristic... anyone else in a similar place, or how has anyone found a confirmation. thanks and best of luck to all
Posted by Misfit (Member # 26270) on :
You very well could have Lyme. You can't rely on conventional testing measures, b/c they are inaccurate. And you could have been bitten without realizing it.
I don't remember the statistics, but a large portion of people with Lyme never had the rash.
There will be others along with links and more information, but I would encourage you to NOT discontinue treatment.
Is your LLMD ILADS trained? Not all LLMDs are what they're cracked up to be.
As far as it being other things? I firmly believe there are "other things" that help to perpetuate Lyme being a chronic condition.
There are co-infections as well, and it's likely you could have one of those. Just hang in there...other, BETTER posters will be along with more information.
Posted by dmc (Member # 5102) on :
download & print out the green booklet from http://lymepa.org on the right side of page
It is a great primer on Lyme & other Tick diseases...last pages of symptoms the can cause.
good luck
Posted by Lymetoo (Member # 743) on :
breaking this up so we can read it
quote:Originally posted by amscal87: ok, so i have been dealing with "lyme like" symptoms for the past 5 months all starting out the first 2 months as bad "tmj" symptoms and headaches,
then moving more to the traditional lyme symptoms. I have been to multiple dr's, pcp, ent, oral surgeons, rheumatologist, neurologists....
No one can find anything wrong with me and my pcp as most of you wont go any furthur since he got the results he was concerned about, neg, baseline tests.
So i guess what im trying to say is, how, if not recalling ever being or having a bite, or rash can i be sure this is lyme and get it into my head so i can accept and continue treatment.
I am currently seeing an llmd, 1 appt so far and he didnt really say yes or no to having lyme, just that it is very characteristic, and i am on tetracycline only,
got 4 months worth of script so far and gonna be following up around the holidays with him. i guess its just i dont want to accept its lyme yet
cause i feel like it could be other things as well and i dont want to leave other things out of the picture.
But my symptoms are very characteristic... anyone else in a similar place, or how has anyone found a confirmation. thanks and best of luck to all
Posted by Lymetoo (Member # 743) on :
Get a Western Blot thru Igenex Lab so you can feel more certain that this is what you're dealing with.
Be sure to get tested for all coinfections too.
Go here to view the symptoms list for Lyme and coinfections:
hello again and thanks again for all of your replies and every day i get more and more info on the disease and hoping i can get it narrowed down for sure soon. Im pretty sure my llmd is ilads certified, and if not im also going to see a second one mid next month to get another and talk about igenex opinion so we shall see. But just had an MRI today so we shall see what the results bring. once again thanks for all the input any any and all advice is greatly appreciated !! ;-)
Posted by lou (Member # 81) on :
Well, you say you have been to a ton of doctors already and they have not found the cause. So, you have already done the differential diagnosis with docs who only excluded lyme. Excluded in the sense that they went only by test results. And although some labs are better than others, no lab test is perfect because not all strains are tested for, and some people have reached the point that they no longer produce antibodies.
About lyme docs: some do not treat coinfections and that can be a problem for some patients. So, you might see how you do with the treatment you are on, and then rethink the situation.
