Slowly Throttling Chronic Illness With Endless Research and Experimentation

When I last posted on my health, 9 months ago, I wrote with no small degree of triumph that I’d licked my chronic illness.  I’d gone from having thousands of skipped and extra heartbeats each day  (called ectopic beats ), losing weight without explanation, and feeling horrible for months, to feeling, if not perfect, then better.

The victory dance was premature.  Soon after that post, I regressed some.   My ectopics crescendoed from ~50 to ~300 per day, and I’d go through periods wherein my body felt like it wanted to explode (I don’t know how else to say it).  The feeling was never as intense as it was when I first fell ill, but that was a small consolation.  So I resolved to study and experiment more.  9 months later, I have a report.  I’m still not where I’d like to be, but I’m better than I was when I last wrote and I know more about what’s wrong.   On some days I’m free of palpitations and feel “normal”.

I’m going to violate the first rule of blogging and write at length.  The investigation of a chronic illness is a long, winding road.  Readers struggling with illness may find clues to their own problems in the details.  Here’s the story:

Knowing I had digestion issue, I started by studying digestive health.   In the course of things I read a book called Optimal Digestive Health – A Complete Guide, a compilation of articles by twenty-some authors, all with a bias toward integrative medicine.  Of my readings on digestive health, this has been the most useful.

Among many other things, I learned that if your heart rate is elevated after meals, it’s a sign of a food allergy.  I discovered that, though I was on a restricted, gluten-free diet, my heart rate was nonetheless elevated after meals, usually by 10-12 beats per minute.
This was an early clue.  Still, my symptoms were consistent with many afflictions, and I didn’t know where to go from there.  I couldn’t just avoid the meals that elevated my heart rate because *every* meal did so.   For a month, I experimented haphazardly and unsuccessfully with several supplements.

Then one day, perusing the book, I noticed a “Candida Questionnaire” I’d passed over.  I knew that one possible cause of my illness was an overgrowth of this pesky yeast in my small intestine – the term for this condition is fermentation dysbiosis – but it was just one of many possibilities and I’d not given it much thought.  I decided to take the questionnaire.   If you score more than 100, there’s a chance you have a Candida overgrowth.  If you score more than 175 there’s a high probability you have it.  I scored 161, and so I decided to look into it.

I began to read about Candida and to follow an anti-Candida diet, described in a book on the subject called The Candida Cure (it’s a low carbohydrate diet – yeast eat carbs, and the diet deprives them of it).  I felt improvement within days.  My physical discomfort partly subsided.

I also began taking a probiotic yeast called Saccharomyces boulardii, which some claim competes with  Candida in the small intestine.  I discovered that, for a day after taking it, I had more ectopic heartbeats, but then they disappeared and I felt better than I did before taking the probiotic.  I came to understand this was probably a “die-off,” or “Herxheimer” reaction:  when certain intestinal flora (like Candida) die in large numbers, they release toxins/allergens which exacerbate your symptoms, so you get worse before you get better.

I discovered that S. boulardii was not the only substance which could cause die-off.  Another supplement, Grapefruit Seed Extract, which is thought to kill both bacteria and yeast, caused an even greater die-off.   Progress!

Though my symptoms were improved, I still didn’t feel normal.  Since my low-carbohydrate diet had helped greatly, I decided to experiment with an even more extreme diet – I would eat nothing but meat for a few days and see how I felt.  Result: I felt great.  For the first time in nearly a year, I felt  normal.  No ectopic beats or discomfort.  It felt so wonderful that I extended my all-meat diet, but it soon took a toll.  Though I no longer had the horrible discomfort and palpitations, I felt fatigued and lost more weight (I had precious little to spare at that point).   My all-meat diet lasted for 3-4 weeks, and then I began including vegetables in my diet.  My palpitations and discomfort returned to an extent.

Then I was stuck.  The meat-and-vegetables diet was difficult to endure.   I couldn’t eat most dishes at restaurants, because even meat dishes often contain high-carbohydrate ingredients which would vault me back into suffering.  Plus I don’t even like meat.  I had been a vegetarian, damit.   I felt trapped between an icky diet and an ickier illness.  I stuck with the diet, but I didn’t like it.

At the time I was searching for a physician who could help to treat me.  Many I met seemed clueless, some seemed incurious, others downright dismissive.  For a while I gave up looking, but finally my frustration with my diet led me to look again.

My readings had convinced me that integrative medicine had much to offer to those with digestive  conditions, so I began looking for doctors with an integrative focus.  I finally found one I liked.  Dr. Michael Sharp.  In our first meeting, he interviewed me for 90 minutes, and he was the first person I’d met who seemed both to care and to know things relevant to my illness which I didn’t.  He became my doctor.

He ordered 2 tests.  Both yielded insight.  From the first, a blood test from Quest Diagnostics, we learned that I had a severe vitamin B12 deficiency and elevated Homocysteine.   Since B12 isn’t easily absorbed, especially in someone with impaired digestion, Dr. Sharp ordered daily intramuscular B12 shots for two weeks.  I felt partly better within hours of the first shot.

The second test was a stool analysis – a 2100 Gastrointestinal Function Profile from Metametrix.  It revealed that I had not one but two intestinal overgrowths: an overgrowth of an “opportunistic” bacteria called achromobacter, as well as a fungal  overgrowth.  For months after I assumed that the fungal overgrowth was Candida, but I later learned that it wasn’t.  The labs included a genetic test that had ruled out a Candida problem.  My fungal overgrowth was unidentified, and the interpretive guide for the tests suggested that it might be ingested mold.

That caught my eye.  I had initially become ill while living in a house with a bad mold problem – there were visible colonies of mold everywhere, and in the months prior to onset my illness, I’d developed a harsh rash on my feet, consistent with a mold issue.  Also consistent were my main symptoms: palpitations, food allergies, and severe B12 deficiencies are all common consequences of chronic mold problems (or so I’ve read).   A mold issue would also explain why some of my anti-Candida treatments worked.  Mold and Candida are related and respond to some extent to the same treatments.

We (my partner and I) no longer lived in that moldy house, but when we moved, we brought our stuff with us.  I later learned that this is a no-no if you’re running away from mold.  The mold gets into your stuff – especially soft stuff, like books and blankets.  We’d brought ~20 boxes of books with us in the move, along with our bedsheets, towels, etc, and hadn’t washed some of them before bringing them into our new home.  Dolts.

So now I thought I understood something about the origin of my problem, but I didn’t think that we still had an environmental mold issue.  Not realizing that mold was likely to have come with us, I assumed that we’d left it behind when we left our old house.

On that assumption, I ignored my environment and focused on my gut.  I added two treatments.  The first, recommended by Dr. Sharp, is called Candex.  It’s an enzyme that dissolves the cell walls of molds and yeasts, and thereby breaks up the “biofilms” they tend to establish in your gut.  I also started drinking tea made from ground licorice root, after learning that licorice root contains an array of antifungal chemicals (be careful with stuff though – it can have serious adverse affects).

The result was that I immediately started to gain weight.   While I’ve been sick (~1.5 years now), I’ve struggled to maintain my weight.  I’m 5’8” and I weighed about 119 pounds on the day I started taking Candex and Licorice tea.  3 weeks later, I was up to 128, without any diet changes.

Shortly after however, my symptoms returned in force, but only while I was at work, and despite my continued diet.  I’d wake up in the morning healthy, roll into work, and I’d be wracked by palpitations by noon.  If I didn’t come into work, I was fine.   At first I chalked it up to stress.

Then, one day while at work, I picked up a nylon case that had been sitting unmoved on my office floor for a month.  The underside was a blanket of mold.   I investigated my office. I found blooms of mold everywhere.  The floorboards for example, and especially the desk.   The desk was a kingdom of mold.

I had it remediated, and that was a big turning point.  I began to feel much better.

Now my attention was locked onto mold.  I bought a hygrometer to measure relative humidity, and I discovered that it was very high both at home and in my office (80% in my office with the A/C on, higher with it off.  It should be no higher than 65% and preferably lower than 50% to prevent mold growth).  I inspected our new apartment for mold, and found it in several places.  We began getting rid of things.  We dumped cases of books, replaced the bed  we’d brought with us from the old apartment, bought new bedsheets, new furniture, started dusting and cleaning the apartment regularly, and bought a dehumidifier.

I started to improve rapidly, enough that I felt comfortable experimenting with foods other than meat and vegetables.  My first experiment was a plate of beans and rice.   I had no negative reaction!  That was a moment of triumph.  I felt like I was ready to live normally again.  Days later, I had my first cup of coffee in more than a year.  I paraded around the office telling people about my amazing cup of coffee.  Mistake.  2 hours after drinking the coffee, I was beset by waves of palpitations.

So, there were still things I couldn’t eat.  Nonetheless, I decided to press on with my dietary expansion.  My hope was that, having finally identified and (at least partly) eradicated the environmental problem, my food sensitivities were subsiding and that I could slowly reintroduce all the foods I used to eat.

I adopted a rotation diet, wherein when you eat a particular food, you don’t eat it again for at least 4 days.   This is done to avoid stoking food allergies. The first few days of this diet were magical.  I ate a plate of mung beans one day, and a bowl of rice on another.  No consequences!  But then, just when I’d become convinced that I was firmly on track to recovery, something changed.  Over the course of two meals, my old reactions returned.  So I went back to meat and vegetables only.

That’s where I am now.   I’m certain that I’ve made progress in remediating the environmental mold, but my food sensitivities have returned from their brief absence and I’m not sure how to deal with them.  My hope is that I simply moved too fast in trying to reintroduce foods into my diet, and that a slower approach will work.  But I’m going to stick to my old meat and veggies diet for a while first to let my body recover from the recent shock.

There’s a lot I’ve left out of this account.  I haven’t mentioned all the things I tried that didn’t work.  Such failures can offer valuable clues.  For example, I took a number of remedies aimed at fighting Candida, many of which failed to have any noticeable effect.   Oregano Oil, Three-Lac, and Caprylic Acid are all examples.

Mysteries remain.  I still know little about the Achromobacter overgrowth.  Achromobacter can cause nasty systemic infections in surgical patients for example, but mine seems confined to my gut and it’s not known what it does there or how it can be managed.

Likewise, another stool analysis finding was that I have too little bifidobacteria in my gut.  These are healthy bacteria necessary for proper gut function.  I’ve been supplementing with probiotics to rectify this problem, but have no way to measure my progress.

I’m more proud of the way I have dealt with my illness than I am of anything else I’ve done with my life.  I’ve refused to be defeated, refused to heed suggestions that there’s nothing wrong or that there’s no fix.  I haven’t handed my problem to doctors who couldn’t prove their competence.  For once, I’ve lived by Churchill’s exhortation to “never, never, never, never give up”, and I now know better what it means to do that.  I’ll carry that knowledge to my grave.


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6 Enlightened Replies

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  1. Marie says:

    Good grief, Nick. And good job! I hope you continue to find insight and make progress.

  2. admin says:

    Thanks M

  3. Elissa D says:

    I’m a big believer in managing problems as much as possible through positive measures like this, Nick. I have a really minor condition that I have to monitor through dietary measures so I have had a *tiny* glimpse at what a pain must have been.

    You rock. Stay well!

  4. anna says:

    interesting. i’m curious as to how your body has responded to foods naturally high in probiotics like sauerkraut and yogurt. Any hippie will claim them as healthy for digestion. In my own experience naturally fermented foods seem to sit better, but then again I don’t have any diagnosed digestive disorder.

  5. admin says:

    I haven’t tried high probiotic yogurt, but I regularly eat live saurkraut, and it seems not only to sit well but to help in the management of my condition. This surprised me since, many, many people say you should steer clear of live probiotics. I haven’t been able to find any explanation of the logic behind this recommendation, which makes me suspicious that it may just be one of those speculations which has been repeated so many times that people start to take it as a given.

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