How doctors think:::
My correspondence with the infectious disease doctor concerning my test results ::: (I hesitated to post this as I do not want people to become discouraged by reading this. We know that it is up to us to pursue our wellness and do hope that we find a concentious physician to work with.)
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My email to the dr.
Subject: Test results
Hi Dr X:
Thanks for trying to get ahold of me via the phone, unfortunately we have been unable to connect. I hope things are well for you.
As you recall we discussed the ideas of protozoa infections and I had a chance to review the lab results by going down to the hospital and picking them up. I see that I tested negative for the 3 protozoas you tested for and did notice an elevated C Reactive Protein, problems with creatine probably from the Cushing's and some slightly elevated liver enzymes.
As you know, I have been ill, I have been able to utilize an elaborate schedule of supplements that has keep me somewhat afloat. Cushing's is a dangerous disease with a high mortality rate. And you know that I have researched extensively about Chronic Fatigue Syndrome, Cushing's, infectious disease etc. I would suspect that I have 25,000 hours of research.
So in my research I have looked extensively at the protozoa theory of
Chronic-Fatigue-Syndrome (having ruled out viral etc.). The unformed and yellow stools, right upper quadrant pain, the adrenal response, fatigue, bloated abdomen, sore throat and rheumatism factors all point to an intestinal infection.
I found a lab (certified) that does PCR testing of stools, I was able to send a test in and received a positive for a protozoa infection. Although they are able to identify many species, mine returned with a 'unknown taxonomy' (report attached). They state:
A taxonomy unavailable finding likely indicates an ingested protozoan and not a human parasite. It
does not indicate treatment unless patient symptoms and other inflammatory markers are consistent
with
parasite infection.
Of course with the high C Reactive Protein and strong adrenal responses, this would indicative of an infectious etiology. I know that you may disagree with me concerning the adrenal responses, but I did confirm this with Drs. Y and Z as well as with the Chief Research Endocrinologist at the NIH (Esther Sternberg, MD) who incidentially recommended OSU. They all suggested the adrenal response was due to a humoral immune situation.
So I will await your comments. Thanks for your time.
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Mr. B,
I hope all is well with you. Judging from your email, you have been hard at work on your own case. Perhaps I can answer some questions about your screening and test results here at OSU, though I doubt I’ll ever be able to give you the answers you want regarding your chronic fatigue syndrome.
As you know, you were tested here for a parasitic gastrointestinal infection through two different means: 1). an antigen stain which looks at the 3 most common (giardia, entamoeba histolytica, and cryptosporidiosis) as well as 2). a concentrated, comprehensive microscopic exam (to cover the other ones that don’t show up on the antigen screen). Both of these were negative. They don’t rule out a parasitic infection with 100% certainty, but in your case, there was such a low pre-test probability of having an infection, that repeating the assays did not seem warranted. Stool is a highly diverse environment from a microbial standpoint, and indeed, most people have protozoan DNA of some kind in their feces. This most often represents what we call commensal organisms—organisms that don’t cause clinical infections or harm to the patient, but rather live peacefully there, much like the vast majority of bacteria which we are packed with. Utilizing PCR tests on the stool for any known
parasites is not clinically indicated and cannot be recommended without further study (not FDA approved).
Your other blood tests were essentially unremarkable. You had a mild elevation of your liver transaminases. This could be due to many causes, but is most likely related to some fatty infiltration of your liver (to be expected given your body mass and body fat distribution). If you wanted to look into this further, I would suggest an evaluation by a gastroenterologist. The mild elevation of your CRP is not clinically significant, and indeed, the sedimentation rate (which also measures inflammation) was completely normal. Your rheumatoid factor and other antibody tests were also normal.
If you do indeed have Cushing’s Syndrome, I can find no underlying infectious cause for it at this time and I see no clear indication for any further infectious disease evaluation at this time. I understand you probably will disagree with this assessment. In which case, I would be happy to refer you to any of my other colleagues.
I do wish you the best, Mr. B, and good luck with your struggles with chronic fatigue syndrome.