Hi everyone. Like probably all of you (or at least were at one point), I am extremely desperate to get my life back and feel like the medical world is failing me. I would greatly appreciated any input.
Starting around 10 months ago in October, I noticed a major increase in anxiety symptoms. Since anxiety runs in my family, I thought nothing of it. Over time, it kept getting worse and I just generally felt really bad. I also developed gastritis that lasted from December until March. After this, the gastritis went away and I started getting random pins and needles in my right hand that was not due to any reason and a GIANT increase in eye floaters.
Since then, over the course of about
5 months, I have developed very debilitating levels of fatigue, joint pain, and muscle pain. It migrates a lot and I have good and bad times, even though it is undeniably getting worse. I also developed random periods of shortness of breath in which my doctor put me on prednisone for 5 days for. This made me feel MUCH worse.
I have many many symptoms. Everywhere from random frequent urination to light sensitivity, ear ringing, cracking joints, and swollen lymph nodes in my neck I'm also very sensitive to the cold. I have had joint and muscle pain at absolutely every point on my body. My back and neck are particularly bad. These come and go.
As far as testing is concerned, my brain MRI and neurologist has ruled out MS. My rheumatologist has run a full lupus/autoimmune panel and the only thing that seems even possible is Sjogren's. But she admitted my blood results are strange and it is extremely contradictory that prednisone made me feel worse. I also have an elevated SED rate of 30.
If you don't have the time to read above, here is the main point: A doctor I saw at an urgent care center said that Lyme is a clinical diagnosis so he started me on doxycyline 100mg 2x daily. I was on it for 4 days and it started to make me feel better, but I noticed the following:
The debilitating symptoms improved noticeably, but all of the little symptoms came out. Normally with my illness, I have severe migratory pain and fatigue. On the antibiotic, every symptom that I had had at some point came out, but it wasn't as bad as before the antibiotic.
Unfortunately, I couldn't stomach the AB (I have severe GERD) and was coughing up reddish mucus from esophageal irritation so I had to stop. 24 hours later, I felt the worst I've ever felt in the entire 10 months that I've had this problem. It was unbelievable; all of the symptoms that I've had absolutely killed. My neck was so stiff. This continued for another 3 days. I even went to the ER to be safe one night, and of course, met with a doctor that didn't even know the ELISAs are really bad. (It's not his fault; he's probably a great person and doctor...I'm mad at the CDC for teaching bad protocols.) He said I am not herxing since I don't have a fever. Anyways, I am finally starting to feel slightly better, but still feel really really awful.
Do you think this could be a side effect of the AB? Could it be a herx reaction? Has anyone experienced anything like this?
I'm sorry for being so self centered and talking about
myself so much. I am very desperate. I start school in a week and as of now, I am planning on taking the semester off. This devastates me greatly.
By the way, I sent my blood out to IGENEX and should hear back within a few days. I have a negative western blot through Quest and a few negative ELISAs. Thank you!
Post Edited (sinkingfun) : 8/15/2015 8:33:35 PM (GMT-6)