Hi Maatson, I spoke with a coordinator with a national amyloidosis support group yesterday. She said that after meeting 4000 amyloidosis patients, and attending loads of conferences, she's never amyloidosis affect anyone who is only 30 years old. But I understand your point about amyloidosis, and I'll seek to have that ruled out by biopsy.
I began taking antihistamines yesterday for the first time to see if it would have any effect on this ongoing, 6 week, illness. I'm taking Xyzal (5mg). It made me feel slightly better, and the hypertrophied fungiform papillae on the tip of my tongue seem to have responded with a moderate reduction in their swelling. Do you know of any allergic reactions that can cause purpura in the mouth and some of the other symptoms I've described? (Night sweats, fever, swollen tongue, low lymphocytes, etc). Also, if I have a viral illness, would it be unsafe to take antihistamines?
I still suspect Mono or EBV, or Herpes as triggering this whole illness. I tested negative for Mono and a swab of my tongue did not detect Herpes, but I know that during the second week of symptoms, when I was taking Valtrex, my night sweats remitted, and everything felt much better except the tip of my tongue still had hypertrophied fungiform papillae. After I finished my Rx of Valtrex, my night sweats returned for about a week and then disappeared again. I haven't had real night sweats (changing damp shirt multiple times per night) now in about 3 weeks.
Thanks for your help Maatson. Its great to have someone knowledgable to discuss this with. I've seen over 15 different doctors now in six weeks and still no Dx--I haven't even had anything ruled out, except HIV appears to be exceedingly unlikedly given my Combo test results (negative) at 28 days post last exposure. Most doctors I've seen aren't worried about me, but I know my own health, I know that I'm very ill, and have never felt like this before. I also know that blood blisters in the mouth are not a good sign. I do not have a history of hypochondriac type behaviour. Also, my CBC results show something is unusual:
I asked my GP to do a differential composition analysis of my lymphocytes, but he refused, saying it was unnecessary. I'm in Canada and we have socialized medicine. If i could pay for a specialist to see me, I would do so in a flash. Right now I've got a long wait (a month or more) before I can see any specialists. I feel its up to me in the mean time to try to figure out what's causing this illness. Do you think seeing a dentist would be of any use?
Please let me know if any ideas/tests/strategies come to mind. Again I REALLY appreciate your input. I owe you one.