Despite my admonishments to stay well if you want to avoid the multifarious problems of our health care system, sometimes–and through no fault of your own–you’ll get sick.
Your best chance of emerging unscathed from whatever ails you is having what’s called a “self-limiting condition,” namely, one that goes away by itself, with or without doctoring. With any condition that brings the phrase “if symptoms persist, see your doctor” to mind, well, best of luck. Most of the time, the gods will be on your side, your doctor will figure out what’s wrong, and you’ll do just fine.
But here’s the story of a woman with persistent symptoms who saw not one doctor, but at least ten over six long years. Some of her docs came from the best medical centers in town, others were what might be called “alternative.” Finally, getting nowhere, she took matters into her own hands. And that’s really what this story is all about.
Alison is in her fifties, very bright, and until six years ago quite healthy. It was specifically during one week in 2005 when she and her husband were vacationing in Mexico that both of them suddenly became ill. He had the fairly standard turista and recovered with antibiotics, but her symptoms were different. She initially experienced a sudden onset of severe nausea, dizziness, and profound exhaustion, and the first time this happened actually blacked out. Alison and her husband returned to the US and from that week forward her health was never the same again.
Although Alison felt guardedly better on her return, she began to experience peculiar week-long episodes of just feeling very ill: nausea, dizziness, and weakness, all severe enough to send this usually active woman to bed for a week. Then she’d recover enough to return to work. “Recover enough” means never really feeling well, however. And a few weeks later, another episode, another week in bed.
Alison’s primary care HMO physician could find nothing wrong with her, even though she returned multiple times.
“I couldn’t get them to order more tests,” she told me, “but I knew something was wrong. I felt like I was pounding on their door to let me in, with no response. I knew they just didn’t want to see me anymore.” (This image, by the way, can be found in Franz Kafka’s novel The Trial.)
After two years (two years!) of this, Alison’s symptoms began to change for the worse. Now an episode was accompanied by stomach cramps and watery diarrhea. And still her HMO physician had no suggestions—not a diet change, anti-diarrhea medication, nothing. Then one day the episodes stopped being episodes, and instead her diarrhea was non-stop. Seriously weakened by days and days of watery stools, Alison changed medical centers and went to their emergency room. It was obvious she was extremely dehydrated, and she was admitted for intravenous fluids and antibiotics.
“Unfortunately, I arrived at the beginning of a three-day weekend. They sort of forgot about me and by Sunday they were treating me for getting too much fluid. I was literally drowning.”
Finally, still in the hospital, Alison was seen by a gastroenterologist, had a colonoscopy, and was told she had a form of ulcerative colitis. She was started on steroid drugs, discharged, and actually felt guardedly better for a while, though never fully well. Alison herself doubted the diagnosis, however, and after weeks of taking steroids decided to see a different gastroenterologist at a different medical center for a second opinion.
He didn’t believe she had ulcerative colitis, but rather celiac disease. She was advised to stop the steroids and also stop eating all gluten. Again she felt a little better, but knew she wasn’t out of the woods.
Something still wasn’t right.
Alison gives up on conventional medicine
When despite cutting out gluten her symptoms escalated again, Alison was told to restart the steroid drugs. This is the point, she told me, at which she gave up on conventional medicine, deciding to try her luck with traditional Chinese medicine, Ayurvedic medicine, and nutritionists.
And still no progress.
Then, on her own, Alison began reading about intestinal parasites, on her own ordering a parasite testing kit. Each of the three stool specimens she submitted showed a large number of a parasite called blastocystis hominis. Delighted to finally have discovered her problem, she took the results to her gastroenterologist, who promptly disparaged the whole issue of self-diagnosis and the non-hospital lab she’d used, shrugging off the report and its conclusion. (He may have even tested Alison’s stools and identified the same parasite but…see #3 below for more on that).
After some online searching, Alison located an MD parasitologist in the UK and arranged a Skype consultation. Based on her test results, he completely agreed with her diagnosis, saying that of course she’d acquired it on her trip to Mexico and that he’d send a list of the prescription drugs she needed to clear the infection. Because he wasn’t licensed in the US, he couldn’t prescribe the meds himself, advising Alison to give the medication list to her own doctor. The UK parasitologist even added the name of the compounding pharmacy he most trusted to prepare his anti-parasite mix, a combination of three prescription medications taken together over a period of ten days.
Not wanting to go back to either of her gastroenterologists, Alison located a sympathetic physician who retested her from a second parasitology lab. And again all three specimens show heavy amounts of blastocystis hominis. This physician, however, was reluctant to prescribe the UK medication combo because one of the three drugs wasn’t FDA-approved for parasites. Instead, this doctor prescribed a standard blastocystis treatment, which the UK physician had already warned Alison “wouldn’t work, not strong enough.”
He was right. It didn’t.
Alison makes her way to WholeHealth Chicago
At this point, Alison scheduled a visit with us. I admit that as I sat listening, utterly enthralled by her six-year quest to get well, from her first sentence I had a clear sense of what she was going to say based on three facts:
#1 If you’re healthy and you visit a developing or newly industrialized country (such as Mexico), become ill there, and can’t get better, you’ve acquired a parasite. Period.
#2 The mail-order labs for parasite testing (Genova, Metametrix, Meridian, etc.) are actually superior to hospital labs, but in Alison’s case old-fashioned physician arrogance had reared its ugly head. Veterinarians are also quite good at parasite diagnosis, though sadly your health insurance won’t work in the office of the compassionate vet who cares for your terrier.
#3 Many US gastroenterologists do not believe blastocystis hominis is a pathogenic (i.e., disease-causing) parasite. I know this may be hard to accept. But because I trained in the same hospitals myself, I knew that even though Alison’s stools had been repeatedly tested for parasites, when the results she showed her doctors said “blastocystis” these physicians shrugged it off as harmless. But blastocystis hominis from Mexico isn’t the same as the US variety, and I have a sneaking suspicion that Alison’s doctors forgot to ask a key question, “Did you do any foreign travel before you became ill?”
In the Brains Department, there wasn’t much for me to do. Alison had just held my rapt attention with a textbook history of a chronic parasite infestation as detailed as I might hear in a lecture by a university parasitologist. She then spread before me six separate stool-specimen reports from two highly respected labs, all showing “heavy growth blastocystis hominis.” The labs had even made photographs of the parasites.
Alison then handed me her correspondence with the eminent UK parasitologist, his prescription, and the phone number of the compounding pharmacy he preferred.
All I had to do was pick up the phone
David Edelberg, MD
PS Anticipating your questions
- People acquire this parasite via fecal-oral transmission—dirty hand to mouth or infected food service worker hand on food you’re going to eat.
- Scientists don’t know for certain how blastocystis hominis causes diarrhea and other symptoms, though it’s probably by releasing a toxin.
- Did Alison’s UK drug regimen work? She’s taking the medicines as you read this. Stay tuned.