It's taken me over a year to finally be able to sit down and document what nearly took my life. There were 3 or 4 times, I didn't think I'd wake after going to bed for the night. The majority of the time dealing with this nightmare was the "not" knowing. Was it terminal? How long do I have to live? I just wanted to know what it was, so I could tackle it head on. But that wouldn't happen for quite a while.
It was a year ago last October (2013) that I figured out the cause of a year and 3 month long health scare. I went to specialist after specialist & no one could figure out what I had. I was tested for everything under the sun. I had numerous symptoms that mirrored a lot of auto immune disorders. Just about everyone that exists. The episodes would start with excruciating, debilitating muscle pain that would begin from the back of my calves all the way up my back and around my chest, into what felt like it was affecting my lungs, making it difficult t breath. It would eventually envelope my whole body, all the way up the back of my neck and into my jaw. The burning sensation felt like the muscles were eating themselves. It got so bad I could barely walk up the stairs in my house. It was beginning to hold me captive.
Eventually I kept pushing through it, no matter what, I wasn't going to let whatever this was stop me from living. I'd still hike & camp in great pain with very high fevers. The high fevers worsened at night. All of the muscles in my body would constrict as I would shake myself to sleep... Usually waking up soak n' wet from extreme night sweats. This was just the start of it. Symptom after symptom continued to accrue. On top of the muscles burning, the joints started to hurt. The hands and feet were the hit the hardest. It felt like arthritis. Nothing ever showed up in blood work or serologies, other than inflammation. Then one day the skin on my fingers started to break down and crack to the point where it made it difficult to touch or pick up things. I wore band-aids on the tips of my fingers as well as using medical glue to stop the cracking & splitting. Everything was painful to the touch. I remember telling the doctors that my organs felt they were drying up and cracking as well. I still firmly believe on some level, that what was happening. As the months went by, the symptoms mounted. I had vertigo for a small period. I developed iritis in my left eye, twice. Which is inflammation of the iris. With the pressure I initially woke up with one morning & small blindness, I thought for sure I was losing my sight. I also had random bouts of skin irritation throughout the whole year and 3 months. Mostly the feet, arms & legs... to the point where you'd scratch the skin away to nothing. Pure torture.
I didn't think it could get worse but then it did. I had random numbing on the side of my left calve & knee. My attitude at this time was, just throw the symptoms on the pile with the rest of them. The episodes would take me out for 3 sometimes 4 weeks at a time. They started to treat me with a sister antibiotic called Doxycycline. It felt like after a while I may be starting to heal. The episodes seemed to be dissipating. But then they'd start back up again after my 30 day supply would run it's course. After this back n forth roller coaster ride going on for the whole duration. I felt better than I had in a while coming off the Doxycycline the last time. I decided to take my minocycline which had been prescribed for years for scalp acne. Since during a good portion of this time period my internist told me not to take the two together. I'd like to note that I was taking 3 things. Ambien, klonopin & minocycline. That's it. Every doctor and the laundry list of specialists knew I was taking the minocycline. Including my Dermatologist. Who continued to fill my description when I went to him for the itching and skin on hands breaking down. So after the last episode calmed down, I decided to take a minocycline for my scalp. That's when I was able to make the connection. Not the doctors or specialists, but me. The minocycline was slowly killing me. I found it causes lupus like symptoms or full on aggravates in your system. As well as a slew of other bad side effects. I had an internist in Michigan corroborate my suspicions. As soon as he saw the name & length of time I'd been on it, he told me to stop immediately. Which I'd already done at that point, a little while earlier. He said you shouldn't be on minocycline for more than 2 years. I was on it for 7-8 years.
The day I stopped and my immune system calmed down, I slowly but surely started to feel normal again. I have been left with some residual permanent damage. I'll always take drops daily so that iritis doesn't come back. I also have some minor arthritic pain in my hands. As well as some numbness. All doable. This was a true nightmare, I wanted to share. I'm sorry it's taken me so long write and share this. Please beware of the drug minocycline.