Around 8 months ago I saw a LLMD and based on my symptoms he thought I had Lyme, I tested positive for Visual Contrast Sensitivity, positive for staph which later became mrsa (nasal only), my ADH was close to nothing, and a few other tests that suggest biotoxins. My ECP was 11, CD57 was 36, he did not do any other Lyme testing but he still thought I had Lyme and maybe also Bartnella (based on symptoms) too but he did not do a test for Bart. Oh, he also did some kind of test that said I was "susceptible" to infections also.
I started on antibiotics and a few months later the staph turned to mrsa and just in those few months I became resistant to the abx I was taking and some others I had not, so I switched abx. My second results for ECP was 10 and my CD57 dropped to 28. I was on two different antibiotics, I was told it was for Lyme, Bart, and MRSA. I was also using nasal silver spray. After 6 months of strict diet change and strong antibiotics I felt no different, no herx, nothing... I looked into other treatments and found a doctor who gave silver through the IV, they told me I would have a herx bad from it so they were careful not to give me too much. I did not herx afterwards, I did not feel better at all, no change.
So then I tried hyperbaric oxygen therapy. I did the hbot almost everyday for an hour for 5 weeks straight, the doctor told me that his Lyme patients usually feel a difference within 3-5 weeks but after week 5 nothing changed at all, no herx, not better, nothing. I did not want to risk anymore money so I stopped the treatment, so far I have spent thousands on this Lyme treatment and I've seen no results what so ever.
I lost my LLMD because he went up in price, he started to charge for writing prescript
ions and changing treatment plans, I couldn't afford that so I had to wait a bit longer for the next appointment. The LLMD refused to call in my betablocker without even contacting me and without it my resting beat is in the 150s, very dangerous to do that, no way in hell do I trust him after that. I can't even trust him for charging to write script
s, what the hell? I do believe some of the tests he did were good but he wasn't the doctor for me. This LLMD has been featured in a documentary and in magazines about
Lyme too...
So after 8 months of all that... nothing has changed. I found a new doctor who is very
openminded but he is not an LLMD, he seems to be very good though, one of the best I've ever had and he's willing to test for anything I ask. He tested me for a lot and it showed that I have no detectable ADH (vasmopressin) despite hormone replacement and some other hormones weren't detected either. It also showed that I am immune deficient, at first they said I might need IVIG after that but then when I saw the doctor again he told me it might be from a pituitary disorder which we checked for right away. My MRI results were normal and some of my hormones were still wacky and didn't make sense, so pituitary disorder was out. I was really hoping that was it too.
I had a regular Lyme test and it was Negative, he knows it's not very accurate but he checked just in case, I was on antibiotics at the time also. He doesn't think it's Lyme because I didn't react to any of the treatments, he did test me for other infections which said I had been exposed but none were active. The abx I've tried during Lyme Treatment are Levoquin, Omnicef, Nitrofurantoin, and a week of Rifampin. The only symptom I ever got from them was orange pee from one. I was told that the strong abx is what turned my nasal staph into mrsa also. I was on a lot of naturals too, cat's claw mushrooms or something, vitamin d, krill oil, and a lot more that I can't even remember at the moment but it was good stuff.
When I tested for cortisol with my Lyme doctor, it was very low so I was put on florinef. The second test showed that my cortisol was normal while on florinef but then when I went to my new doctor my cortisol was high and I wasn't even taking the florinef. He really expected it to be a pituitary disorder but the hormones I had didn't suggest that. What's going on?... Now he wants me to do a sleep study and thinks that maybe I have all these symptoms because my body is not allowed REM sleep? So we are just going through test after test after test trying to figure out what's wrong.
Any recommendations on what I can ask to test for? He's willing to research and test for whatever I ask so please if you have something I can give him let me know. I've been sick for 10 years now and it all started with one symptom, rapid heart rate and skipping. I was a very active athlete when it first started, very active student when it first happened, then the fatigue followed. In 10 years I've gone from that to being completely disabled. I have POTS severely, I'm in constant fight or flight, flushing, sweating, constant rapid heart rate even with beta blocker, constantly dehydrated dry face, chapped bleeding lips, sore throat everyday, minor runny nose everyday, strange deep comatose sleeps, temperature jumps from 96-101, I tend to have some kind of lowgrade fever daily, I have to push really hard most of the time to just urinate. The symptoms go on and on, I see little bits of blue light in my vision eyes closed and
open, I have cognitive difficulties, etc.
I'm not sure what's up... I was bitten by a tick as a kid, I don't know how long it was attached but it was long enough to get very fat. I had no symptoms after the tick bite so I went on with my life until around 5-7 years later when the heart issues kicked in out of the blue, randomly. Up until that point I was very health, good immune system, I was perfectly fine. It took the doctors a few years to find the heart issues, for awhile I thought it was all in my head so I tried to ignore it but when it landed me in the hospital they did a heart ablation years ago. The surgery made me worse instantly, gave me pots and now my legs turn purple when I sit/stand unlike before the procedue.
I've been slowly going down hill for so long now, I really don't think I'll survive the next 5-10 years if I'm left untreated for whatever is happening to me and I'm not even 25. I don't trust that I have Lyme so I need confirmation, how can I get a biopsy done or have my blood looked at under a microscope to actually see them? I can't just blindly start on antibiotics and be on them a year to find out, if it is Lyme I'll probably need IV antibiotics and that is going to be very dangerous if it turns out I don't have Lyme. I thought I was so lucky because I got to do the IV silver, HBOT treatment, strong abx and the naturals.
I'm very low on money and very sick... what can else I do? I've read so much on Lyme already, I did the treatment, spent my life savings and nothing came of it, so so disappointed, seriously, why me? I seriously expected something, heck I should have had some placebo effect but I didn't even get that. Why do I have to be the one that has no reaction to almost everything? I'm beginning to think I'm an alien. Why is it that when I finally get abnormal results it leads to more questions than answers?
I'm sorry for this long annoying post but if I could get some advice, recommendations, I'd gratefully appreciate it.