Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
My PCP said he would work with my LLMD concerning my treatment, I got a call from PCP's office this morning saying he absolutely refuses to work with the LLMD now. Im not sure what happened, but I can guess. I just found out yesterday about all my bloodwork, and have 2 pages of confusing notes on what to tell PCP. now it dosent matter, I have to go to Virginia and quite honestly I need to go now because I'm not dealing with all this too well. I am used to being turned away and told my little "maladies" are just that and dont add up to anything. All of a sudden there is talk of portacaths and long term abx, co-infections.........things I have only read about. now Im scared. I knew I was sick, but all of a sudden it's become very real.I know that once I get to VA things will get better, I just want to drop everything and run there, I need help.
How can a doctor abandon a patient. My guess is that the labs were all faxed to his office and he freaked out. But he is not the one with all of this. He needs to comfort you, the one who has every right to be freaked out.
The good news is that you do have an LLMD. You do have a better idea of what you are dealing with so now you can start on the road of recovery. I know that this battle to get your health back will be hard. But you will win! You have years of a great life ahead of you not years of continueing decline.
I suggest calling an osteopath or holistic doctor to see if they can help. They are often more open and willing. An osteopath took me as a patient when my PCP dumped me at the last minute. It was a blessing in disguise, because he was a much better doctor!
Why are you going to Virginia?
I know things are very scary and overwhelming right now. The last thing you need is something else to deal with. Please remember though, you are not alone and with proper treatment you can get better.
Hang in there okay?
sadly most infectious disease doctors are not on board with chronic lyme treatment. They typically follow IDSA guidlines which are inadequate (see post about "good news on lyme front")
I agree in looking at holistic doctors in your area they are open minded. Hope your insurance is not a PPO. Mine was and no doctor in network would go beyond IDSA guidelines so i went with a naturapath who is also an MD. But it all had to be paid out of pocket. But well worth it since I am feeling so much better!
I'm in VA, if you need a doc recommendation let me know.. I know em all... haha