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Where to go when MDs are apathetic?
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Where to go when MDs are apathetic?

With the body screaming in pain for over 18 months and when nothing shows up in rudimentary lab work, you would think its time for referrals to places where in depth analysis is possible....
It began in June 2004; fatigue, stabbing pain in groin and armpits and a feeling of the flu coming on. It lasted two weeks. Then three days of nausea before a steady pain began in the upper right abdominal quadrant.

Workups were performed to rule out hepatitis and other problems. The only abnormality found was Blastocysits Hominis in the stool. Paromomycin and Yodoxin were administered in a 10 day sequence with 100% pain relief. After the protocol, the pain came back worse than before. And so began the next 3.5 years of doctor visits, herbal experimentation and various other modalities. At one point, I tried Flagyl with no effect.

December 2007 and a tremendous burning pain began accompanied by intense nausea. Stools became yellow and the burning lasted well into spring with radiating burning up the right side of the back. Most of the pain was concentrated in the liver area (front, back and sides). When the pain subsided temporarily, it would "transfer" to the left side of the abdomen in what seemed the spleen or left kidney area.

June 2008, cloudy urine was prevalent with most voids, but no bacteria was found in culture. Urine has been darker than normal since. Pain continues and I have been sleeping with microcurrent "tens" unit stick on pads on the abdomen at night to get sleep without waking up from the pain. Pain is worse at night.

Workups include: Two upper endoscopys; including one with ultrasonography. A HIDA scan with pharm, colonoscopy, CT scan of abdomen, MRI of abdomen, numerous abdominal and renal ultrasounds. Hydrogen breath test and countless amounts of RUDIMENTARY lab work including stool samples.

When RUDIMENTARY fails, isn't it time for referral out to go beyond the usual? Half my hair has fallen out, my ankles have been swelling in the evening (I'm 6'2" and 160 lbs - always tall and skinny, never had puffy legs before). The Creatinine has been creeping up but still in the high normal range. AST/ALT generally normal range, but have been on a roller coaster since early 2008 (highest ALT: 170 following 3 weeks on Alinia); maybe because of the various drugs I've tried: Praziquantel (Biltricide), Nitazoxanide (Alinia), Nystatin, Stromectol (Ivermectin), off label use of Vancomycin Hydrochloride; 5cc oral QID.

Slight pain relief on week two out of three when on Alinia. Great pain relief in liver area when on oral Vancomycin, however pain in left kidney area intense sharp pains causing an ER visit.

In the past six months; first left, then right dilated renal pelvis on ultrasound. Never present before in past imaging. Last month, with the puffy legs; tingling and pain in testicles and darker urine. Three short multi-day bouts of nausea, headache and light fever in past three months.

My personal assessment: Cellular protozoa caught in Japan in 2004. It stayed in the duodenum until 12/07 when it began to burn intensely while traversing gut tissue and gaining free access to organs. Currently there is a bacterial component to the infection (and maybe viral). It has gone to the kidneys and they are being compromised.

I feel time is of the essence to prevent permanent kidney damage and I'm not getting any help. I feel completely alone - doctors look at me like I'm a paranoid schizophrenic. Only a couple take me seriously, however they are the ones who can do the least and have the least likely professional network to be able to get me the correct referrals to the right institution like the CDC or a university research clinic.

Most tragically, the infectious disease doctor at UCSF saw me as early as 2005 and dismissed me then. He again dismissed me in March 2008 saying I had no infection. He never ordered one single lab test, saying I had already had enough tests.

I'm sending this message out in the hope that someone might read it and be able to make a viable suggestion. I have seen a hepatologist at California Pacific Medical Center, another at Stanford and another at the Mayo clinic in Phoenix. They are not used to seeing my symptom presentation. Granted I might present with something extraordinary, however, invasive infection which might be destroying the kidneys is nothing new...

I just need to get to the right place to someone who will take me seriously. However, at this point, I'm getting used to the fact that my organs might have to get destroyed before someone will help...

Does anyone have any suggestions? Including any MDs ... please...
Thank you for your time.
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Avatar f tn
If you had Blastocystis hominis, treatment from what I understand may be hard.  Are you sure it was cleared, or possible if you were clear, got it back?  Also, have you been to a nephrologist?  ~K
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