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The Extraordinarily Persistent Patient

Posted 08/16/2011

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

Be well,

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.

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  1. Lorna Bibbie says:

    OMG! This is so true and typical or what doctors/dentists do. It appears their egos are hurt when you persist or question them or take matters into your own hands. You want to get well and appears they are in the ego and money making business more than the caring and getting well business. Dr. E thanks so much for the article I will keep it forever.

  2. Evie Maurer says:

    Wonderful article. First of all, it shows that Dr. Edelberg is a truly caring doctor who actually LISTENS to his patients! He is also a wonderful writer! I’ll just bet that this woman is cured since she is finally being cured by the right doctor! For me, I’ve given up. Unfortunately, I don’t live near Chicago, and I’m tired of using my time to spend five minutes with a physician who only considers me a number in his day where he has a quota. Life is too short, I’ll try to enjoy the time I have left on this earth.
    Keep up the great work, WholeHealth Chicago!

  3. Catherine Rush-Ossenbeck says:

    Thank you for this wonderful article, David. You are providing such a service to us. Education and self-empowerment are gifts which can sincerely change lives…they have changed mine. Keep up the great work!

  4. Ann Raven says:

    Amazing we’ve avoided this, eating out often and in various foreign countries! Fingers crossed for the future – for us and for
    all of you. David is unique at listening and diagnosis. He’s smart. I love all of you at WHC! Thanks for all of your support and sensitivity and for the imagination and skill with which the practitioners have helped me. Ann Raven

  5. Joan Bedore says:

    Thanks for being such a good and sensitive listerner Dr. E. You truly care more about your patients feeling better than any doctor I have met. This women was lucky to walk into your office that day.

  6. janice Trecker says:

    I had almost exactly the same experience. Sadly, the parasite can recur in two to three year intervals. At least Alison will recognize the culprit if this happens to her.

  7. james bielmaier says:

    Been suffering from BC (documented by stool cultures) for 4 years & is getting more frequent. Several DRs ignored me, but have been prescribed two courses of Flagyl & a course of Alina without results. Tried pro-biotics, yogurt then tried Pepto Bismo daily. Went 4 months without an episode while taking Pepto Bismo. Relief lasted 4 months. Now, has returned as before in 1 to 3 times a week. Can you help me?? Thank you.

  8. Moira Minke says:

    Has Alison’s treatment worked?
    I have been diagnosed, through stool samples, with Blastcytis Hominis and found the web page of Jackie Delaney http://www.badbugs.org. From her web page I have the descrition of the treatment that cured Jackie. It is Triple Therapy. Unfortunately I cannot find a doctor who will prescribe it. I live in Canada and at present visiting Fort Myers, Florida for the winter. I am still looking for help!!!!!

  9. Dr E says:

    Yes: Alison’s stool is completely parasite-free

  10. What an enlightening article. I just got healed from blastocystis hominis. Its now March 2015. Nine months ago, in July 2014, I started a cough that won’t go away. It would begin with a throat infection and then I would cough and cough with no relief. I saw three Doctors — one my regular Doctor trained in Family Medicine. Several times, she treated the cough with varying types of antibiotics, antihistamines, nasal drops, anti-asthma meds and so on.Her theory was that, since I am allergic to house dust and fresh dairy products, my symptoms MUST be allergies. She theorized that my sinuses were dripping so causing throat irritation. The meds helped some but soon, the cough was back. My tummy was bloated, I was flatulent, my stool was unhealthy. I cleaned my house, changed mattress and bedding, and so on. No relief. My daughter in Australia said: Mum, try alternative medicine, and I saw a Chinese Doctor who decided that Ying and Yang:) were imbalanced. She even told me that I was fighting bouts of anger, and mu hormones were totally out of balance. I spent almost $900 on Chinese herbal meds over four weeks of treatment. Coughing stopped for a bit but soon the symptoms were back. I then decided to seek out a ENT Surgeon and demanded an endoscopy, convinced that I had something growing in my throat. Endoscopy was clear and she gave me more antihistamines but this time, decided that I had too much acid and my problem was acid reflux. So, I got meds to stop my “acid pump” in the stomach from pouring too much acid. But I asked her: “Where is the acid coming from?” Still she told me to go on and try the meds. I did and for a week or so, coughing stopped. Then it was soon back. I slept only a few hours and I would wake up to do herbal concortions and so on. Finally, a few weeks ago, I went to my Family Doctor and demanded a full blood test to check on abnormal cells as well as a stool test. I told the Doctor that I am convinced that I have parasites in my gut. She laughed at me and obliged. A week later, results were out. I had blastocystis hominis. After two weeks of treatment, MY COUGH IS GONE! I thank God that my journey was shorter than six years, but who would have thought that blastocystis hominis can be linked to a long irritating cough!

  11. Bryarly McEachern says:

    Hello Dr. Edelburg,
    I have had Blastocystis hominis since May 2013 and have tried Flagyl and Paromomycin to get rid of it, without success. My symptoms initially were diarrhea, nausea and faintness after eating starchy foods, and irritability. Within 2 months I also developed an autoimmune condition of the scalp (lichen planopilaris), resulting in cutaneous lesions and some hair loss. I had to radically change my diet to reduce inflammation in my body, following the Paleo Approach. I have also tried herbal remedies such as black walnut, goldenseal, and slippery elm to eradicate the parasite and heal my gut. In October 2014 stool tests confirmed that I still have Blastocystis hominis. My hormones are also messed up- I haven’t had a period for 5 months. Before I try another strong antibiotic, I’m trying intensive accupuncture for 4 months, but based on others’ reports it sounds as if the only effective way to eradicate the parasite is via the triple drug therapy.

    I have read that Saccharomyces Boulardii can resolve a Blastocystis hominis infection. What are you thoughts?

    Also, do you think that in order for the triple-drug therapy to be successful one should avoid the following during treatment: starches, sugars, probiotics and probiotic-rich foods? I have read (not in scientific articles) that probiotics can make Blastocystis hominis infections worse.

    Finally, have you heard of other patients who have developed autoimmune diseases as a result of Blastocystis hominis infection?

    Much thanks,
    Bryarly

  12. Dr E says:

    Hi Bryarly
    I think the Blastocystis and the autoimmune issues are unrelated but to finally clear the parasite I do suggest the triple antibiotic protocol. I’ve not heard of Saccharomyces able to completely clear Blastocystis
    Dr E

  13. May says:

    Hi Dr. Edelberg, I’m also suffering from Blastocystis hominis for almost 2 years now. I took Alinia and things got better for a few months, but then all my symptoms came back. Can you help me. I live in Canada and willing to travel to Chicago.
    Thanks,
    May

  14. Dr E says:

    Hi May
    Yes, we can work with you. Be sure to bring all your lab tests at the time of your first appointment. Generally, the triple antibiotic approach clears these infections.
    You might want to contact Genova Diagnostics and order the “Comprehensive Parasitology” test if you haven’t had a stool test in the past 6 months. They would mail you the collection kit and you’d send it directly to them

    https://www.gdx.net/product/comprehensive-parasitology-test-stool

  15. Richard Muncaster says:

    Hi Dr. Edelberg,

    Five years ago, I acquired Campylobacter after international travel (albeit to England), and have spent countless hours, thousands of dollars, and relentlessly sought out medical help to solve the ongoing GI issues that have lingered since the initial Campylobacter antibiotics. Similarly to your “persistent patient” story, all of my doctors have disregarded my symptoms, refused to test for parasites, and belittled my situation to a point of saying: “Well, you’re not dying, so what are you worried about”.

    The bloating, severe distention, loose stools, and a multitude of other GI issues have increased exponentially over the years.
    This year, 2015, after finding a Certified Nutritionist, I finally learned that I have blastocystis hominis.

    My Internal Medicine doctor and GI specialist all refuse to provide anything other than Flagyl, which I’ve read, alone, will not kill the parasite in the long term, in fact, it only proliferates.

    Can you recommend any doctors in San Francisco (or Northern California) who practice the triple therapy approach that you’ve used?
    If not, I am open to flying to Chicago to meet with you.

    Desperate but hopeful,
    Richard

  16. Dr E says:

    Hi Richard
    Just click this link and you’ll need not travel to Chicago
    http://bhomcenter.org/wp/physicians/

  17. Richard Muncaster says:

    Thanks, Dr E for the references to US doctors experienced with BH.

    Unfortunately, Dr. Kaiser (Northern CA) no longer runs his private practice (he’s now focused on clinical trials).
    I contacted his employer for a potential referral, but he no longer provides referrals as he wasn’t able to find a practice in Northern California that lived up to his standards.

    Dr. Stuppy (Southern CA) doesn’t have as much commentary online, as you do, especially regarding triple therapy, as he’s used a single approach with Nitazoxanide.

    I will work with Whole Health Chicago on the possibility of meeting with you.

    Richard.

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