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Erythema Multiforme, Tongue Lesions, Purpura on Buccal Mucosa

Hi there,

I've been sick for six weeks. Doctors think I must have caught a strange virus. Tested for HIV, Mono, Hep A,B,C. All Negative. Liver and Kidney function within normal limits.

Six weeks ago my symptoms began with fever, night sweats, diarhhea, and strange lesions on the tip of my tongue. Basically my tongue looks like erythema multiforme, kinda like this, only without the scarring on the lip:

Here's a photo of my actual tongue, 3 weeks later:

Night sweats went away but the tongue illness remains and rises and falls in terms of severity. but numbness on the tip of my tongue, swollen (grooved) tongue edges, and enlarged red papuliae on the tip of the tongue are a constant. Lately, in the last 3 weeks, I also began getting blood blisters/purpura on the inside of my cheeks, i.e., on my buccal mucosa, and occasionally on my upper and lower lip.

My complete blood count was thrown off, but seems to be improving. Right now everything is within normal range except my lymphocytes (my lymphocytes are currently @ 1.3 ... normal is 1.5-4.0). My lymphocytes have been low for several weeks consistently. I'm wondering if anyone has had similar symptoms or can offer any insights.


38 Responses
Avatar universal
It would be wise to rule out primary amyloidosis of the tongue.Manifestations
include macroglossia, in up to 50% of
patients, and oral petechiae or blood-filled
bullae.A biopsy may be essential. Do consult your doc.
Best wishes.
Avatar universal
Thanks Maatson, I'll discuss amyloidosis with my GP. Can you advise me of any specialists I should see? I have an appointment to see a dematologist but it will take one month to see him/her. I look forward to your reply.
Avatar universal
Also, the one irregularity in my other tests included elevated ALBUMIN. My test result was 53. The normal range is 32-52. Does this further suggest amyloidosis? Thanks again.
Avatar universal
I do not think this is significant.Also remember that localized amyloidosis
(Not serious) is distinct from the serious systemic counterpart.
So this is only a differential diagnosis to the virus induced EM.
Best wishes.
Avatar universal
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.
Avatar universal
Kindly excuse delay in replying. Seems there is a server problem to be corrected. I will get back to you.
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