Hey
@znieh87, don't have a definitive answer yet. I'm still chasing a retrovirus as that makes the most sense to me for my case given the available evidence. Do you have problems with your joints?
Hey
@undiagnosed, I do have joint problems. If anyone else has any input or personal updates I'd love to hear it. My story...
Maybe not relevant but since weight changes have been talked about, here is a background history--I was a super healthy lean guy at 21yrs old (~2008), 6'0'', 155lbs. I always was an athlete and felt weak compared to peers so at 21 I started working out hard, and eating a ton. I gained ~18lbs and was hovering 173lbs, and felt great about my new stronger body. I then went to study abroad in 2009 to Italy and just couldn't keep the weight on, came back at ~163lbs. I hovered around this weight for the next 4 years, but felt like I was still in great shape. Every summer I'd escape NYC and go upstate to the countryside mountain biking, lake hopping, running, etc. Around age 26 (2013), I started having joint pains which I chalked up to old sporting injuries and super flat feet. I also started experiencing erectile dysfunction and noticed I started going to the bathroom more often. The ED was very weird because I stopped having nocturnal erections all together. So at this point, I felt like a very healthy guy with some urology issues, an upset stomach (but only really in mornings), and some aches and pains.
I continued with my life--traveled a lot--went to Brazil, Argentina, Germany, Egypt, Iceland..all over... but then things started to get a lot worse. The summer of 2015, my penis started to feel 'extra squishy,' I had a few days of air hunger, I started waking up to drenching sweats (and I am a guy who hardly sweats at all). In October 2015 I get a very bad viral infection, thick green mucous. I'm preparing for my next trip abroad, and don't want to be sick, so I take an 8 day course of Amoxicillin. Things seem to resolve for the next 2 weeks, I go on my vacation, but on the last day, something terrible happens....
I wake up, veins are bulging in my extremities (hands/feet) and are on fire. My heart is racing. My weakness is debilitating. I feel faint. I go to the airport medical station and have an EKG because I feel like I'm having a stroke. Somehow I get through the flight, and the nightmare is just beginning. I go through 6 months of burning extremities non stop, terrible fatigue, rapid heartbeat, disturbed sleep every 2 hrs, my hands go freezing cold randomly, I have trouble swallowing, I'm burping uncontrollably. After seeing 10 NYC doctors to no avail, all they can say is low WBC, low platelet, low vit D, "it seems like your autonomic nervous system got derailed, give it time." I do a Lyme test but only have 2 bands (not 5+). I do the 1 month of doxycycline to play it safe. No effect. I continue on. Few months later I go back and try another round, Amoxicillin, for 36 days. I have 4 great days on it, and I think I cracked the code, but then the next 2 weeks things get TERRIBLE. My scalp starts burning, my hair is falling out, peripheral neuropathy and fasciculations. This entire time my bowel movements are terrible, just poorly digested food 3x a day. I stop the antibiotics fearing that all the conventional doctors were right when they warned me not to go the Lyme route.
More time passes, some things actually get better. I start swallowing normally. The random rapid heartbeats stop. My nailfolds are no longer inflamed (although the nails themselves are now ridged). I start sleeping again. But... just as you'd think I might be improving, the bed-ridden fatigue is back. I start overheating and realize I'm not sweating. This is confirmed by a neurologist after performing a Sweat Test and a Nerve Fiber Biopsy showing "damaged glands consistent with small fiber neuropathy.
Winter rolls around and my fingertips are going white, but not like raynauds....like very cold and white at the very tips. They continue to change and start wrinkling. I realize I'm losing tissue in my fingerpads. They begin to hurt. Another couple months go by, I wake up one night and different muscle groups are cold (ie, my left buttocks, my right calf muscle, etc) and I'm having crawling sensations all over my body. I get out of bed the next day, blood flow to my feet is poor (they are freezing) and I feel like I'm walking on bones. Then I sit down at the kitchen table--it feels like the padding in my butt is gone. I go to grab the door handle to leave my apartment and my hand hurts. I immediately start emailing doctors--I started losing tissue (what seems mostly like a layer of subcutaneous fat, but also possibly muscle/connective tissue). Of course this sounds impossible, but it is true. Every doctor I see has no idea. This last month my palms have been killing me and there are lines forming between my thumb and pointer finger. From what I've read some people have thenar atrophy while experiencing this tissue loss.
I am an analyst by nature and this disease has me stumped. I am falling back on the possibility of lyme (partly out of desperation and symptoms at onset, and partly by location and lifestyle), but for sure have tons of anxiety as there is no real proof and everyone knows what antibiotics can do to an already impaired gut. I paid up for the IGENEX test which shows just 3 Intermediate Bands (31,34,39). I've sought out a different lyme doctor than I originally saw, and now I'm rotating multiple antibiotics and supplements. I'm only 30 days in, but haven't experienced the dreaded "herx" yet. Figure I'll give it 3 months to see if any improvement. Will definitely let people know if I find any success.
Still, I can't help but read everyone's comments and wonder--is this triggered by a virus? Is it triggered by antibiotics? Could antibiotics have awoken a dormant virus? Is it a metabolic problem? There is definitely something catabolic occurring. Could the root be hormonal?--ED was my first major symptom, even before falling ill. I've also talked to a woman who started getting the wrinkled fingertips and fat loss after pregnancy. I've already exhausted 3 different rheumatologists, who basically fell on a very not confident--undifferentiated connective tissue disorder.
I will just stop there. Any insight or similarities you hear with my story would be helpful. I feel if we can focus on symptoms everyone has, we would be able to narrow things down--ie, do others have peripheral neuropathy, gut problems, erectile issues, lack of sweating, etc etc. I eat very healthy and have tried all the gluten/dairy free diets, as well as all the holistic options--acupuncture, herbs, etc and have yet to find an answer.
