I've seen two LLMDs and have had severe cognitive impairment (absolutely no short term memory, extremely slowed cognitive function, brain fog, no concentration, etc), muscle twitches, dizziness upon standing, white tongue, and a drunk/altered/derealization feeling for almost two years now with no relief from treatment.
I've been on IV meds (almost 5 months), orals (10 total months), both, clean diet, exercise, detoxing, herbs, antifungals, everything I can think of. I had a really bad experience with my first LLMD who took me off antibiotics after two months. Then I went a whole year with no treatment until I went to another, who I've been with for about eight months.
He wants to take me off antibiotics because I have not responded at all. I've tested positive through igenex and cdc as well as a low cd57 which was just tested last week and was a 26 (through lab corp).
I feel that my situation calls for a top LLMD because I haven't responded to any treatment, I was most likely bit in Europe and have a european strain and/or coinfection, and I really believe my IQ has gone down by about 35 points. But most of all I think my situation is more than Lyme.
I'm scared I'm going to have permanent brain damage if I don't start seeing results soon. I tested negative for co-infections but have been treating bartonella for the last two months along with iv to no avail.
I'm willing to travel anywhere in the united states and pay any price to see one of the best LLMDs. I want a doctor who's up to date with everything and tests/treats every possible infection or virus that can go along with Lyme. (Candida, XMRV, mycoplasmas, all co-infections, viruses,even ccsvi procedure etc, etc, etc. (you see where I'm getting at?) Also, one who test with igenex and fry labs or any top lab for infections.
Really just a doctor who's known to cure or significantly treat patients who have not responded to previous treatment and know how to work with cognitive/neurological problems. The doctor doesn't necessarily have to be an LLMD neurologist just someone who knows how to treat bad cognitive problems.
I've had to postpone two years of graduate school because of my poor brain function and I personally don't think it's permanent damage and that I can get better but I need the right doctor. I'm sick of wasting time and money on doctors who treat half-ass and don't take their patients seriously. I just want to go to the top.
I'm willing to be put on a wait-list for a month or two but I also don't want a doctor who makes their patients be on a wait-list for 6+ months.
If anybody has ANY recommendation(s) please either send my a private message or respond. This is severely ruining my life. Please help.
Posted by Lymetoo (Member # 743) on :
Sorry.. but I have to move this to Seeking a Doctor.