Discussions By Condition: I cannot get a diagnosis.

Wasting Away

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: NorCal Namaste
  • October 1, 2008
  • 07:44 PM

Hi, my partner Jeff is a Caucasian 38 year old gay man with no prior medical history of illness, and no medical problems in the 16+ years we've been together. That all changed last year. I fear my partner is dying despite months of doc visits, tests, and hospitalizations, and I need some advice.

In November 2007, Jeff was having painful urination. Our family doc diagnosed "acute prostititus" and prescribed Bactrim. After taking the Bactrim for 10 days, Jeff had a severe alergic reaction which included muscular/skeletal pain, burning skin, difficulty swallowing, loss of taste, persistent cough, loss of appetite, abdominal pain, and severe anxiety. Our family doc prescribed Vicoden and Xanax to deal with the symptoms and ordered tests to rule out any other cause. After about 10 more days, the painful urination returned, and our family doc prescribed Cipro. The Cipro cleared up the prostititus by the end of December, but my partner was still left with many of the symptoms from the Bactrim reaction, as well as others that may be associated with a reaction to Cipro (fluoroquinolone).

Over the following months, some symptoms have diminished in intensity (muscular/skeletal pain, burning skin, difficulty swallowing), while others became more severe (nausea/vomiting, persistent cough). He has seen specialists in GI, Neurology, and ENT. Many tests have been completed, but no cause has been found for his condition. The current strategy employed by our family doc and our internal med. doc is to treat the symptoms and "wait it out."

It is now coming up on one year since the initial doctor visit for the painful urination, and my partner has become a shadow of his former self - Jeff is wasting away. He has dropped from 182lbs to 122lbs over these several months (he is 6' tall), due to not being able to eat enough calories. He's been hospitalized twice for uncontrolled vomiting, and we've had several ER visits for the same issue. He still has the burning skin (less severe, more localized to his trunk), the persistent cough, taste perversion (he can taste, but things don't taste right, they taste "gray"), abdominal discomfort ranging from mild to severe, periodic severe nausea/vomiting, and anxiety. He is on disability from work, has sold his part-time small business, and is near the end of his emotional rope.

What do you think we should try? Are there tests I should have done or re-done, or other anti-nausea/gastric drugs that may work better than those that have been tried (see below)? Naturopathic doc is on the list already, but he has been reluctant to try that approach.

Please post if you feel you can help.

thanks,
- Brian


Tests Completed
11/07 - Urinalysis
12/07 - Blood Tests: CBC Auto + Reflex Manual Diff, Sed Rate Westergren, Anti-Nuclear AB (ANA), Rheumatoid Factor
01/08 - Chest X-ray
01/08 - Blood Tests: Comprehensive Metabolic Panel, TSH (Sensitive), Thyroxine Free (Free T4), Urinalysis
02/08 - UltraSound Abdomon
02/08 - Upper Endoscopy
02/08 - Blood Tests: Glucose Fasting, Hemoglobin A1C, Vitamin D,1,25-Dihydroxy, Vitamin B12, Lyme AB, IGG/IGM Western Blot, Syphilis Test Serum, Hepatitus C AB Screen,
03/08 - CT Scan Abdomon + Pelvis
03/08 - Esophogram (swallow study video)
03/08 - Blood Tests: Cortisol, Adrenocorticotropic Hormone, TSH (Sensitive), Thyroxine Free (Free T4), T3 (Triiolothyronine) Free, Tuberclulin PPD, Histamine (Plasma), 5-Hydroxyindolacetic Acid, Blood Culture
03/08 - Urinalysis - VMA & HVA, Metanephrine
04/08 - MRI C-Spine and Brain
04/08 - Blood Tests: HIV 1 and HIV 2 screen, CBC Auto + Reflex Manual Diff, Immunofixation (Serum), VIT B6 (Pyridoxine), Vitamin B1 (Thiamine), Folate, Zinc (Serum), Lyme AB, IGG/IGM Western Blot, Cat Scratch Fever (B.Henselae), Brucella Antibodies IGG/IGM
04/08 - Colonoscopy
05/08 - Gastric Motility Study
05/08 - Blood Tests: Basic Metabolic Panel
06/08 - Blood Tests: Syphyilis Test (serum), Syphilis Test (TPPA), Creatine Kinase, Aldolase
07/08 - Blood Tests: Basic Metabolic Panel
08/08 - Blood Tests: Basic Metabolic Panel
09/08 - EMG Nerve Conduction Study

None of these tests revealed a cause for his symptoms. Thyroid results were normal but near the high range, gastric motility was normal but in the slow range. All other tests have not found a likely cause.

Current Medications
- Adivan 1mg / AM or as needed
- Benadryl 25mg / PM
- Prilosec 25mg / EVE
- Cymbalta 30mg / PM
- Marijuana / as needed to keep sane

Previous medications included an anti-nausea and motility drug routine. However, it was ineffective in that each of the anti-nausea drugs that we tried had limited effect (Phenergen, Compazine, Zofran) and the motility drug was stopped due to concerns about taking it long term. The Adivan seems to have as much effect on nausea as anything else.

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3 Replies:

  • My wife lost her sense of taste after 9 days of Bactrim DS 2 tabs twice a day, which was prescribed by her family doctor for a skin infection. She began to experience a tingling in her mouth, followed by a bad taste in her mouth, progressing to a feeling that she could not tolerate any food in her mouth and then finally an inability to taste anything. I first thought she had developed a case of thrush and gave her an antifungal medication to rinse her mouth out with. When that did not help after a week, I began to review the side effects of Bactrim and found a reference in the Merck Manual indicating that Bactrim can lead to a Folic Acid deficiency. Therefore, we bought some over the counter vitamin B12 400 mcg tabs. I gave her 2 at the purchase time and another 2 tablets approximately 5 hours later. Within 4 hours of the 2nd dose, she began to indicate that she could partially taste food again. This may not work for everyone, but we are already pleased with her response. Anyone with similar problems should make sure that they follow directions on the label and/or do not take megadoses of the Folic Acid for prolonged periods. Good luck.
    Anonymous 42789 Replies Flag this Response
  • My wife lost her sense of taste after 9 days of Bactrim DS 2 tabs twice a day, which was prescribed by her family doctor for a skin infection. She began to experience a tingling in her mouth, followed by a bad taste in her mouth, progressing to a feeling that she could not tolerate any food in her mouth and then finally an inability to taste anything. I first thought she had developed a case of thrush and gave her an antifungal medication to rinse her mouth out with. When that did not help after a week, I began to review the side effects of Bactrim and found a reference in the Merck Manual indicating that Bactrim can lead to a Folic Acid deficiency. Therefore, we bought some over the counter Folic Acid 400 mcg tabs (my first posting said Vitamin B12, which was a typo). I gave her 2 at the purchase time and another 2 tablets approximately 5 hours later. Within 4 hours of the 2nd dose, she began to indicate that she could partially taste food again. This may not work for everyone, but we are already pleased with her response. Anyone with similar problems should make sure that they follow directions on the label and/or do not take megadoses of the Folic Acid for prolonged periods. Good luck.
    Anonymous 42789 Replies Flag this Response
  • I recenty finished a perscription of the Generic for Bactrim DS. One the tenth and last day I started losing my sense of taste. I took this back in November and lost my sense of taste then for about a week. It has been roughly 4 days this time I hope I have the same result, but it seems more sincere this time. I can not taste, but I also get bad stomach aches if I eat more than a few bites of food at a time. Drinking any fluids the same thing. I am miserable.
    Anonymous 1 Replies
    • January 19, 2014
    • 08:58 PM
    • 0
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