hi all — very long — sorry!

I’m new here, and I can’t believe I am posting my story YET again in a different forum in the hopes that somebody will say, “Yeah, that definitely sounds like (_______)…or me!” Like many of you, I certainly have been put through the ringer for the last 9 1/2 months. So…here I go again:

I’m a 30 year old male, living in New York City. I have had strange medical things happen over the course of my entire life, really, but nothing too alarming — sleep paralysis now and then, once diagnosed with lichen planus, had 3 swollen glands removed when I was 17 (benign), strange left wrist that would sweat out of the blue, eczema, cognitive issues — word retrieval problems, switching letters and numbers, short-term memory, passed out only once in my life and it was 5 minutes after given a booster shot (when I was about 14?). Even with all of these strange things, I still considered myself pretty healthy! I ran the NYC marathon in November, 2004, so I couldn’t have been TOO unhealthy? (The cognitive issues and eczema didn’t come until my twenties). Anyway, when I was 20, I developed chronic prostatitis that lasted for 10 years (still have it, although not quite as bad). I was actually told not to worry about it from one urologist, so I just dealt with it for so many years without getting any treatment…until February, 2006 when I decided that enough was enough!

A different urologist diagnosed me as having nonbacterial chronic prostatitis and gave me 1000mg of Aleve to take for 2 weeks and then something called uroxatral to shrink the prostate (even though it wasn’t enlarged, he thought it could alleviate the burning symptoms). So, to my surprise, it did seem to help a little bit — the Aleve that is. Then I tried the uroxatral, which didn’t do anything, so I went back to the Aleve. I didn’t want to be on the Aleve for too long, having heard about stomach bleeding, etc. A few days after I went BACK on the Aleve in the beginning of April, I started to get stabbing pains in the liver area for about 36 hours straight. Oh, I forgot to tell you that I had a bad headache in the BACK of my head in January of 2006 (before starting on the medications) and started to notice that I would get scars from very minor cuts, so something was probably already in motion and maybe the medications could have been the nail in the coffin.

After the liver pain, a few days later I started to get what I call “clubbing pains” like diffuse, little bone/connective tissue pains from EAR LOBE to TOE, I mean they were everywhere. I thought I was just coming down with something so I didn’t worry about it too much. Then a few days later I started to get severe muscle burning pains (like somebody was dumping acid in my muscles). I was still having the strange clubbing pains, too. Both pains took over my entire body, and I would get them every 10 seconds! Then my calves started twitching nonstop, which in a few days grew to twitching everywhere! And I do mean everywhere. I went to the ER was told it was anxiety (you know the drill) and given Tylenol (yeah, thanks!) Well, I kept getting worse — this was definitely not a stress or mind-over-matter type thing. A few weeks later, with no change at all and VERY little sleep from all the pain, I started to get the paresthesia (water dripping sensations) — I forgot to mention that I also had bugs crawling sensations on my torso way back in 2000, but I was told not to worry about it. (UGH!) The water sensations went from water dripping down my leg to little drops of water everywhere from eyeball to limbs, hands, feet, no part was left untouched. A month later (and suicidal at this point due to the fact that all symptoms were still there and there was no waxing and waning) I started to get painful beesting and electric shocks sensations — and other dysthesias. I had already had a normal EMG/NCV and an MRI with constrast of c-spine and brain. By July, my joints had started to get stiff — from knuckles to shoulders…everywhere…you can even see some disfigurement in the knuckles. I also noticed beaus lines on my toenails (which I read can be from malnutrition or severe illness). I also started to have involuntary jerking of limbs, fingers, toes (along with the constant muscle twitching). I would just cry all day (and I very rarely cry), because the neurologists all said different things (like “fleeting neuralgia” “post-viral” and just gave me drugs to cover up the symptoms). The drugs — lyrica, neurontin, vicodin, amnitriptyline — nothing even touched my pain, because this wasn’t constant, steady nerve pain…this was START AND STOP pain everywhere every 10 seconds…never knew where it would be.

Finally, after my own research, I thought it could be Lyme Disease, so I found a reputable LLMD in the Connecticut. My blood results were IFFY, not technically positive (even through Igenex), but I did have a positive on (for those of you familiar with Lyme) band 41 and 58 and IND on 39. My sister, who also has had very strange aches, pains, and other bad symptoms throughout her life (still a mystery to this day) had the exact same results as I did plus a + on band 30. I also found out that I am HLA-DR4 and DR7 positive, so this could explain a concurrent autoimmune response, although my ANAs were 1:40 (twice). My sister also had borderline positives and even one that was 1: (four digit number), but lupus was ruled out because she got a little better…but isn’t this normal…waxing and waning? I know this is one big non sequitir!

My CD57 (another supposed Lyme marker) was indeed low at 42, now it’s 36 (normal is 60-300). I failed a muscle kinesiology test that indicated I could have Lyme (but how reliable are those?). I have a few other abnormal results from a lab in California — Immunosciences Lab:

IgG Variable Antigen to Lyme 2.1 normal is 0-2
CD4+ Cell to Antigen A 16 normal is 0-10
CD4+ Cell to Antigen B 13 normal is 0-10
TNF-A Lyme Antigen (A+B)*2 1020 normal is 0-1000

but everything else was normal…even testing for coinfections.

So I did a total of 5 months of antibiotics…the only group I didn’t try were the -cillins. I even did 90 days of IV Rocephin and I had no change at all, no herxing. Also did 38 sessions of hyperbaric oxygen and, again, had no change whatsoever and no herxing, which leads me to believe that I either don’t Lyme or it has no turned into an autoimmune disorder?

Still with me? I went to an integrative doctor in NYC, and he found high levels of mercury, candida, and many food allergies (I know the first two are controversial in the medical community). Well, I did several months of mercury chelation with DMPS and DMSA, took antifungal meds and changed diet to stay away from inflammatory foods and ones I am allergic to. I’ve been taking lots of MSM, B-12 shots (actually had a very high level of B12 in my blood before taking any B12 supplements and was told it was probably just circulating in my blood because my nerves weren’t able to use or absorb it, which is why i am taking B12 shots), essential fatty acids, glutathione pushes, 5HTP/tyrosine (because my dopamine and serotonin levels were low — not a shock), a very alkaline diet so my body pH is less habitable for any critters that may be in there, magnesium taurate, essential oils, etc. etc. End result — ABSOLUTELY no change my status. I was still being shocked, stabbed, clubbed…and twitching, jerking every 10 seconds (on average).

So I made one last push and found another neurologist. He made me do another EMG/NCV, because he said that they are often read incorrectly (lovely, eh?) or results may have evolved (or devolved!) since last test. Well, he was right. I was found to have slowing in the NCV and was told I have peripheral neuropathy. Not only that but I had autonomic dysfunction (which I have read is less common in CIDP but possible) due to an abnormal QSART (I didn’t sweat at all when I was tested) and abnormal heat sensitivity test. I also get a little light-headed and tachycardia when I stand up (although these symptoms don’t bother me at all compared to the symptoms from hell — pain and parasthesia!) Seems like I have small AND large – fiber neuropathy. I will get the skin biopsy results in about 10 days to see if there is breakage, damage to these small fibers, which the neurologist is already telling me there probably is. I have developed some minor weakness in my left foot, but, unlike many of you, weakness for me almost seems to be an aside! I just noticed it recently, actually the neurologist noticed it before I did. I guess I have a little tremor in my left hand too, or so he tells me!? I notice my stiff joints more than slight weakness and, of course, the pain and parasthesia without any breaks is driving me insane!! I have never been so depressed in my life and if I ever get better, trust me, I never will be this depressed ever again!

This new neurologist just tested me for paraneoplastic syndrome (bloodwork sent to the Mayo Clinic), although he said it’s unlikely I have cancer due to my age AND the following tests (you guys are probably familiar with these):

quantitative immunoglobulins, immunofixation electrophoresis, cryoglobulins, c1q binding assay, SSA, SSB, ANA (yet again), ANCA, dsDNA, thryoglobulin & microsomal Abs

The neurologist seemed somewhat hopeful that he could help me, which is nice, but I have been let down so many times by uncaring and insensitive doctors who just told me to “get over it.” Now I at least have paper that shows I have these neuropathies! It’s not just neuropathy either, bones and muscles have been affected too…nails, skin. If this were autoimmune and NOT lupus, what could affect so many body systems — small/large fibers/autonomic/bones/nails/muscles/skin — pretty much everything!??????