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:
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.
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.
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.
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.
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.
Oh yes, Guess we are at a near diagnosis. Extremely rare though Henoch- schonlein purpura can have a oral-facial presentation.Not a serious condition but then presentation like this is very rare.
Recurrent Henoch-Schonlein purpura presenting as gingival petechiae and mandibular pain Original Research Article
Journal of Oral and Maxillofacial Surgery, Volume 48, Issue 6, June 1990, Pages 634-637
Raymond J. Enzenauer, Stephen H. Sutley, Robert W. Enzenauer
Also I am terribly sorry for not replying for quite sometime, and the PC was out of action!
Even from day1 I did think of Anaphylactoid purpura (Henoch schonlenn) as a differential diagnosis but that it can present at the oral mucosa was an eye opener from the above article I read.
Do talk to your doctors and let me know your progress.
My GP thinks allergies are an unlikely cause because there's usually more respetory symptoms with allergies. I didn have a cough or a runny nose. I'm referred now to two specialists. I'm concerned about lymphoma. My lymph nodes were swollen during the first week of symptoms. And they're still painful from time to time even now six weeks later. I also had night sweats for three weeks which is one of lymphoma's classic 'B symptoms'. Do you think lymphoma could be a possible cause of the oral symptoms? Would there be any clues in my CBC if lymphoma was the issue?
Many thanks. I'll MSG back with any new info I find out from my doctors. Please let me know your opinion about lymphoma.
Hi again Maatson I just wanted to mention ITP or idiopathic thrombocynic purpura. My GP thought that my ITP could not have caused my purpura because my platelet and red blood cell counts were within normal limits. However I did experience a drop in both platelets and red blood cells and I had an irregularly high mean platelet volume measurement. When MPV is high, it indicates increased destruction of platelets, thus making ITP more plausible. Please share any thoughts you made have and thanks again for talking with me !
Why the lesions are localized to the oral mucosa only? That is the crux issue here.A viral fever with lympadenopathy seems likely with a drug induced localized shonlenn purpura.
I believe this would settle down.
My best wishes.
As you can see, my symptoms have improved a lot, even since three weeks ago. But I still have "geographic tongue" and a intermittent metallic/stinging battery type taste on my tongue
Some more details about the medications in that chart:
1.Nystatin was prescribed for suspected thrush. (2 x 2 week dose)
2.Valtrex was prescribed for suspected herpes (on tongue) (1 week dose)
3. Suprax- given by doctor at my request. 10 day dose, I took it for 6 days then stopped taking it--it *seemed* to make my condition worse (diarrhea, metallic taste in mouth, etc.)
Other medications I've taken in the last year:
A year ago I was on 30 days ofloxacin (for suspected prostatitis). I think it was a fungal UTI and misdiagnosed as a bacterial infection.
Over the last 8 months I've taken Fluconazole 150mg single dose on three occasions for post-antibiotic fungal issues
I regularly use, especially in the summer, antifungal creams to treat recurring jock itch in the groin area
One month before symptoms started, I was prescribed Zithromax 2g single dose for a suspected STD causing UTI with discharge (chlamydia most likely). I think this diagnosis was correct, I had white/yellowish discharge from my urethra every day for a week.
I have been eating a lot of protein supplements lately but discovered that some brands are known to have high levels of arsenic, so i stopped eating them one week ago.
Also, one week ago I started taking Xyzal, an antihistamine, once every morning. I'm not sure whether its helping or not.
HIV negative (1,2,4 &6 weeks after symptoms began)
Hepatitis A,B,C negative
Liver function normal
Chlamydia and Gonorrhea Negative
kidney function normal
Also, a note about my CBC results (which you can see here):
http://www.medhelp.org/user_photos/show/265672 Doctors told me that my CBC results from years ago show a low lymphocyte count, suggesting that my normal lymphocyte count is on the low end of normal.
Well done and perhaps one of the best clinical presentations ever! But then as I had told you you are on the recovery phase of a possible mononucleosis-like illness induced by cytomegalovirus or adeno virus.
My good wishes for speedy recovery.
Hi Maatson, I hope you're doing well. I'm waiting to see a dermatologist and still getting geographic tongue and those odd purpura on the buccal mucosa. Yesterday I also noticed a water filled cyst underneath my tongue. It has since burst and is not painful. I thought I'd post a picture in case it provides any clues about my illness:
Hi Maatson. My dermatologist referred me to an infectious disease specialist today. He said my symptoms were serious and required urgent attention. He was alarmed when he noted a heart murmur while listening to my heart. He said the murmur could be the result of an underlying infection. He also gave serious consideration to the idea that an exposure to an exotic fungus or bacteria in my apartment may have caused the illness. I'll let you know what the infectious disease specialist says. Thanks again for your help
According to the internal medicine specialist the murmur is not very pronounced and may have been pre existing. I have an echocardiogram scheduled for this coming Monday. I also had a lot of new blood tests ordered by the internist so I shoul have those results by the end of next week. I'll let you know what I find out! Thanks for your help and ongoing attention!
Hi again. Just thought I would add that after 6 weeks of peace at night my night sweats have returned. They started again two nights ago seem to be getting worse. Tonight I'm back to having to change my shirt
Do get a mantoux test to rule out a tubercular aetiology with special reference to night sweats.
With not much leads this seems another option here.
Hope we have a name to your condition and initiate therapy.
My good wishes.
Would you agree with others that HIV is an unlikely cause? I had four incidents of unprotected vaginal sex in three months preceding the onset of symptoms. 4th generation combo tests at 4 12 18 28 and 42 days post symptom onset were all negative.
I will have my doctors look into TB And the test you mentioned
What do you make of the fact that valtrex seems to have had such a positive effect on my symptoms during week two. See the symptoms & medications chart in my profile photos section please. Three or four days after starting valtrex my symptoms all subsided except some geographic tongue. Three or four days after stopping valtrex my symptoms all came back and lasted for another week before the night sweats disappeared. I have read that valtrex is only effective and prescribed for herpes family viruses like hsv 1&2, cmv and ebv. I've also asked an expert at The Body.com about valtrex and HIV and they told me that valtrex would be unlikely to have any effect on primary HIV are symptoms or on the time taken by the host to produce antibodies.
Please let me know your thoughts about my experience with valtrex
I also took nystatin while taking Valtrex but I think that the nystatin had little to no effect.
Hi Maatson, you've been great so far at suggesting possible causes. I'm working on a list of possible causes to present to my internist. I was wondering what you think of pemphigus. It can have some strange effects on the oral cavity, including symptoms that mimic geographic tongue, as seen here from this photo found on the internet:
However, I believe Pemphigus is an auto-immune condition and so it should present with a positive ANA? My ANA test result was < 1:40 (negative). But I have been re-tested for ANA and should know the results by the end of this week.
Any thoughts about my beau's lines (which I forgot to mention up until now) and my ideas about pemphigus? Thanks again Maatson. I owe you one.
Only about one third show ANA positivity in pemphigus, and also Beau's lines are casual associations.A generalized condition and rather uncommon in your age group is pemphigus. Benign mucosal pemphigoid is more localized but again the age group.
I was wondering if you know whether oral inflammation can cause post-inflammation oral purpura. During the early acute phase of this illness, I had a swollen tongue, which was often scalloped by teeth indentations around the edges. I also had a white bumpy ridge, more pronounced or inflammed than usual, running from the corner of my lips, along the interior of the buccal mucosa, to where the the molars meet. It was after this inflammation mostly subsided that the purpura first appeared. At present, any minor trauma, such as the accidental biting of my tongue or buccal mucosa, produces a localized dark red blister/purpura at the site of oral trauma.
Also I thought I'd mention the good news that I didn't have any night sweats last night.
Hi Maatson, I wonder what you think of reactive arthritis (reiter's syndrome) in my case. I had a negative ANA and my ESR was 0. Still, chest pains due to aortic dilation, oral lesions including geographic tongue and papules, amyloid deposits, are all possible symptoms of reactive arthritis. I had severe myalgia but only for a couple of days during the first weeks of illness. Recently I've noticed some odd unexplained joint pain but it is very localized in the right hand. Let me know if you know of any tests that might help rule out Reiter's as a cause.
Hey everyone. I just signing in to say that I've seen a HUGE improvement in my oral symptoms (geographic tongue and purpura) ever since quitting soy. I was drinking a lot of soy milk, pretty much 1/2 a litre per day on average. I now suspect that I developed a soy allergy or that the soy interfered with my zinc absorption. If you're getting geographic tongue, I strongly recommend you look at your diet very carefully. Good luck to everyone
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