Could somebody please help me figure out what I have and what I should do?

My symptoms started after taking multiple simultaneous antibiotics from a doctor I believe was crazy who diagnosed me with some unvalidated "lyme disease".

I was prescribed Bactrim, Refampin, Minocyclin and Azithromycin to take long term for 6+ months. I think I took Bactrim for a month or two and the rest for about 5 months. This was about three years ago.

A couple weeks into the antibiotics I began to experience unusual sensations all over my body. I felt snow flakes or rain drops all over. I later experienced water sensations running all over and stinging. They are mostly random or provoked by pressure and not often by skin, but I can get unusual sensations from scratching. I told the doctor and he said it was just the antibiotics fighting the lyme infection.

After I left the doctor after deciding there was no evidence or proof of this I stopped the antibiotics and the symptoms did not go away. A few months later I got a slight constant burning and numbness in my feet which lasted maybe three weeks. It then went away and has not returned.

Over time the symptoms calmed down and removed from my upper body and went to mostly my feet so it feels like small splashes of water in my shoes when I walk. After 18 months I believe the symptoms went away or were so little I totally forgot about them and moved on with my life.

I was clear of symptoms for maybe a year when I got a very bad upper respiratory infection and a few weeks into that all my symptoms came back strong all over my body. I was heart broken.

I then waited 6 months and over that time the sensations started to calm down again and were not as low as before but were mostly in my lower legs and not my whole body. A noticeable difference.

Then at 6 months I got another upper respiratory infection, though not as bad as the last one. My symptoms returned after about 10-14 days into the infection and were once again very active and all over my body.

That is where I cam now. I have seen a neurologist and saw him as of the last infection, but not the most recent and plan to go back asap. I just visited my primary care physician and they were not able to suggest much. We had hypothesized that it was metabolic or nutritional last time because of a very low carb diet and so I took vitamins, but now it has come back a second time with an upper respiratory infection and that seems to be a pattern.

My only other health problems are some trigger point muscle symptoms in my upper body, jaw, neck and head and right hip. I also just had a very scary and unusual fainting episode that happened in public while standing. No idea if it is related or if it was a fluke and I was low on food and dehydrated. I hadn't eaten much that day and I'm still getting over a cold. Never had that happen before.

My neurologist said last time 6 months ago that I could get an evoked potential test or do physical therapy and the test was optional. I've had small fiber test at Johns Hopkins during the first bout it happened maybe 10 months into it if I remember. They said they thought it could have been immune mediated. At that point I had no upper respiratory infection, just the antibiotics. I've also had the standard motor tests many times.

I'm also looking for a concierge / direct pay primary care doctor to discuss this with.

Thank You.