Aa
Autoimmune, chronic virus or what?
Hi, 29 y/o male from Australia.
I have been struggling with an undiagnosed illness for well over a year now. I have had a ridiculous number of tests which have not shed light on my situation. My symptoms have been progressive and included:
Inflammation in nasal passage and thick clear mucus in throat. This went on for a year before other symptoms presented.
Gastritis attributed to bile reflux on endoscopy and biopsy
Abdominal pain (comes and goes) mainly upper but lower as well
Lymph pain (armpits and groin). This was also one of the earlier symptoms.
Random bowel movements (soft, hard, dark, light)
Significant Weight loss
Twitching
Constant low pressure gas (both ends)
Lower back pain on flexing
Frequent fungal infections on penis
Frequent mouth ulcers
The doctors and specialist are stumped and don't know what to do. My test results show:
Elevated pancreatic amylase (7 to 10 times upper limit) with normal lipase and elastase - for this reason and no evidence on CT and MRCP my doctor won't diagnose pancreatitis. They tell me my pancreas seems to be functioning correctly and there is no evidence of damage on imaging.
Moderately elevated IgA (however my last test showed it at higher end of normal)
Bicarbonate comes back on the higher end of normal
Recently I have developed hyperthyroidism that has shown not to be Graves disease.
Tested low positive to Hep C 4 years ago. Viral load testing out to a year showed no virus. Subsequent tests for antibodies over the past year have been inconclusive. Alternating between low positive and negative. Antigen always comes back negative. I do not drink alcohol or smoke and have never used drugs. Doctors say I must have been exposed to the virus at some point and cleared it. They say I should always test positive but are stumped as to why I don't. I suspect cross reactivity with some other chronic virus or autoimmune process the is going on. Exactly what I don't know.
I tested positive to EBV but the doctors said most people will. I have not done a test for viral load as the doctors said it was not necessary dispite my objection to this position.
The major things that this suggests have been ruled out. This is something out of the box which will require that type of thinking. I'm looking for some ideas to be thrown my way. Anything obvious or not let me know. I'm so tired of this.
Thanks.
I have been struggling with an undiagnosed illness for well over a year now. I have had a ridiculous number of tests which have not shed light on my situation. My symptoms have been progressive and included:
Inflammation in nasal passage and thick clear mucus in throat. This went on for a year before other symptoms presented.
Gastritis attributed to bile reflux on endoscopy and biopsy
Abdominal pain (comes and goes) mainly upper but lower as well
Lymph pain (armpits and groin). This was also one of the earlier symptoms.
Random bowel movements (soft, hard, dark, light)
Significant Weight loss
Twitching
Constant low pressure gas (both ends)
Lower back pain on flexing
Frequent fungal infections on penis
Frequent mouth ulcers
The doctors and specialist are stumped and don't know what to do. My test results show:
Elevated pancreatic amylase (7 to 10 times upper limit) with normal lipase and elastase - for this reason and no evidence on CT and MRCP my doctor won't diagnose pancreatitis. They tell me my pancreas seems to be functioning correctly and there is no evidence of damage on imaging.
Moderately elevated IgA (however my last test showed it at higher end of normal)
Bicarbonate comes back on the higher end of normal
Recently I have developed hyperthyroidism that has shown not to be Graves disease.
Tested low positive to Hep C 4 years ago. Viral load testing out to a year showed no virus. Subsequent tests for antibodies over the past year have been inconclusive. Alternating between low positive and negative. Antigen always comes back negative. I do not drink alcohol or smoke and have never used drugs. Doctors say I must have been exposed to the virus at some point and cleared it. They say I should always test positive but are stumped as to why I don't. I suspect cross reactivity with some other chronic virus or autoimmune process the is going on. Exactly what I don't know.
I tested positive to EBV but the doctors said most people will. I have not done a test for viral load as the doctors said it was not necessary dispite my objection to this position.
The major things that this suggests have been ruled out. This is something out of the box which will require that type of thinking. I'm looking for some ideas to be thrown my way. Anything obvious or not let me know. I'm so tired of this.
Thanks.
Hi are you saying that while you tested positive for HCV, there was no viral load? There are people who are able to clear it. Their body fights it off so while they test positive for exposure there is no geno type or viral load because it is gone.
I hope you don't have it but if you do there are new medications that are much shorter and easier to take then interferon was
Good luck
Dee
I hope you don't have it but if you do there are new medications that are much shorter and easier to take then interferon was
Good luck
Dee
Have you been tested for HIV? Have you had an inmmunological panel done to check lymphocytes subsets values etc?
I just looked up elevated pancreatic amylase, and that can cause symptoms of diabetes. So that part sounds solved, but why the elevated enzymes with a clean ct scan and MRCP, so I would make them double check you for tumor markers. Go see the right dr just to make sure you don't have cancer. Then make sure you don't have one of those pseudo cysts. I have seen a lot of those in my line of work. Get second opinions, this is your life! I know you are in pain. My heart goes out for you!
(And FYI, I've been out of work for about a year, so I'm a bit rusty... So forgive me if none of what I said helped. I really do hope I helped you, but even more so, I hope you already have your answers and are feeling better now.)
Love hfh789
(And FYI, I've been out of work for about a year, so I'm a bit rusty... So forgive me if none of what I said helped. I really do hope I helped you, but even more so, I hope you already have your answers and are feeling better now.)
Love hfh789
I was just reading thru the questions to get my mind off myself.. (Been dealing with pretty bad panic and depression for past few days) but I think I might have a thought which makes sense... I'm a RN, but currently not working... When I worked in inner city hospital, they made sure to rule out HIV , so I'm sure you have ruled this out... So then I got to thinking, you may have diabetes type 1 or 2.. I'm just thinking that is what is causing the fungal infections, mouth sores which also may be fungal, the weight loss, and stomach issues!
Of course, then I'm thinking... I'm sure they have already checked you for DM. So another thought about the fungal. Maybe you and your partner are swapping a yeast infection back and forth... A lot of women don't know when they have one.
Stress could be a root cause of stomach issues and can mess up your immunity.
Of course, then I'm thinking... I'm sure they have already checked you for DM. So another thought about the fungal. Maybe you and your partner are swapping a yeast infection back and forth... A lot of women don't know when they have one.
Stress could be a root cause of stomach issues and can mess up your immunity.
have you checked your lymphocyte count ands wbc's.did you have contact withanyone intimately that could have been related to the onset of this problem.were you tested for other issues related to hepc and ebv?
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