Is social media smarter than a doctor?

Feb 19, 2012 by

In my earlier post I indicated to those of you still around that the reason for my extended absence started out as a two-week holiday from writing and ended up being two months of insanity. I will detail all of it in an upcoming post but here I want to deal with a personal health issue that greatly contributed to my absence.

I’m trying an experiment here: crowdsourcing a diagnosis. My doctor and experts have not been able to diagnose what is wrong with me in all ten years of this illness. I think you guys can do better.

Are there others out there with similar symptoms, were you correctly diagnosed, was there a treatment, are you cured, managing, etc.?

After so many years suffering with this, I sit here staring at the blank screen below my last sentence, powerless to know where to begin.

Ringing in my right ear always precedes what I will call an “attack.” What causes the attacks? Herein lies the mystery. Some days I’m back to my theory that the ringing in my right ear is the sign of an infection of some kind in my ear canal, inner ear and/or Eustachian tube. Other days, after eating something with soy oil, or a piece of pumpkin pie, or almost any other kind of food, I will notice a faint humming in my ear. Sometimes it will happen when I have eaten ‘safe’ foods for weeks. Recently when I was about to come back to oddbloke.ca, for dessert on a Sunday we had a dairy-free/soy-free pumpkin pie my wife Erin made. It was very good and I felt very good too. As the week progressed I was feeling what I will call my “best” since this entire nightmare started. The following Sunday we decided to have pumpkin pie again. The next day a serious “attack” started and as I write these words I’ve been sick for weeks.

This apparent variance makes me doubt that my illness is caused by food at all. There are things that do consistently make me sick: whole wheat breads, most nuts, milk, soy, chocolate, green tea, canola oil, oats, corn, celery, greasy foods.  Then there are things that we think are okay, but can never be sure of: white bread, eggs, sweet potato, gourd vegetables, cheese, beef, anything excessively greasy…

Regardless of the cause of an attack, if it ends up being a serious one, I experience the following progression of symptoms:

The humming in my ear will get louder and my ear will get sore. I will often sweat profusely at the beginning of a bad attack and it can continue for days and sometimes weeks. I will sweat mostly from the armpits, soaking my shirts to my waist. It is not uncommon for me to go through several shirts in the course of a day.

On these days I’m very cold even in a room that is 30C. Throughout this time my stomach will be very upset and no matter what I eat I will have diarrhea. As the attack progresses my thinking become incapacitated, with an inability to concentrate and feelings of agitation (could be just because I feel like a bag of s%$t.) I will also often have blurred vision and dizziness. Interestingly when the attack is prolonged for more than a week, the skin above my eyes becomes very dry and itchy.

Other notes:

I have a lot of inner ear scarring from repeated ear infections in babyhood – my right eardrum is always deflated (they tried a tube to no avail).

I was always healthy, but have never been truly well since moving from the prairies to BC when I was 27 (I’m 44 now). As a kid I would always have an asthma attack when my family holidayed in BC..

The health problems started being serious after I ate a bad slice of pizza. I had a severe  case of food poisoning and was disoriented and dizzy for 6 months afterwards. After that my digestion never seemed right and I had a lot of stomach pain. There followed a series of infections and health issues over the next twelve years: epididymitis, prostatitis, sinus infections, gallstones (gallbladder removed in 2009), developed allergies to my cats, and now, recurring ear infections, or so it seems, except that the ENT always tells me there’s no sign of any infection.

We have thought of candida, leaky gut syndrome, irritable bowel syndrome, environmental allergies, some kind of superbug or virus that’s entrenched in my system….we just don’t know.

So – what the hell is wrong with me?

I’m begging you on my knees to share this as much as possible. If I could connect with people who have experienced the same symptoms maybe I could find a solution and get my life back again. Thanks in advance for your generosity.

That’s it for now. Now to get back to the meat and potatoes of oddbloke.ca

Cheers,
Rod

 

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11 Comments

  1. Allan Giles

    In all seriousness; what kinds of toppings were on this piece of “trigger” pizza?

    • RedIron

      Allan,

      Well its a long time ago. Going with my old Pizza tastes I would venture that it would be Ham or Salami with the standard cheese, green peppers, etc. Why do you ask? I’m intrigued! Thanks for replying..

      • Allan Giles

        Well, seeing as you can’t seem to find anything (yet) allergy wise, perhaps you picked up some sort of parasite that is happily camped somewhere inside. I’m not a Dr., so take this for what it’s worth.

        One of my co-workers acquired a very rare parasite by eating seafood that had not been fully cooked while vacationing in Vietnam. Her symptoms were general nausea, discomfort, and swelling in her abdomen. It took her doctors a long time to narrow it down to a liver problem. The problem? The parasite is in her liver, and it ain’t goin’ nowhere. She basically has to wait for a donor.

        Her symptoms are different from yours, but she too had a “mystery” illness for a couple of months, until it was figured out. Has your liver been given a clean bill of health?

        I had my appendix removed years ago, but I’ll never forget how I felt before it was yanked, major discomfort in my guts, not quite pain, but tres uncomfortable, and a feeling like I had to go to the bathroom, but basically nothing was coming out. Plus a big fever, I was a mess.

        If you still have yours, I wonder if there is such a thing as intermittent trouble with the appendix?

        Anyways, good luck. I hope someone hits the magic button for you.

        • RedIron

          All of this us usfull information Allan. I really appreciate you giving me ideas on how to proceed. Sounds like you had a hell of a time yourself. When you get sick you truly realize that addage that money is nuttin’ and health is everything… peace and thanks so much for being one of the few people who responded..

  2. laurel

    sounds like mold/bacteria……..I went thru some crazy stuff for the last year….just starting to feel better now…..long story…..anyway…….maybe its in the vents in your house or in the walls….look it up… I bet you have more symptoms that you are not even aware of …. . PS… they couldn’t figure out what was wrong with me either… I spent hundreds of dollars on creams, antibiotics, foods, vitamins, deodorants etc etc etc… When I switched vehicles and work place I started to get better. Good Luck!

  3. Laini

    Rod–

    Have you been to see an allergist at all? I had the patch test a few weeks ago, and they told me I wasn’t allergic to anything, but I know I am. There is something in northern climates I can’t handle (snow and melt cycle turns me into a sinus monster, which had never happened before).

    It may have been something on the pizza, or it might not, the timing just happened to fall at the same time? If the patch test isn’t successful, they can do blood tests to to check for more serious issues.

    Hope you can find some relief. This sounds nasty.

    • RedIron

      Yes and I had the same extremely unscientific response from the allergist as you did. A brilliant lady, who I can’t remember her name just now was doing research at the University of British Columbia in 2004 on the effects of food and internal immune response. Her thesis was to prove that the common method of patch/scratch testing was wholly inaccurate for diagnosing food allergies. I do believe her work has been picked up and is becoming more and more accepted but as yet if you mention it to an allergist you are met with a dull expression of disbelief.

      Thanks so much for responding… Yes you are right it is awful… But so far it isn’t terminal so I suspect that I have no place to complain while I have a chance to figure out what is wrong with me and I can continue to fight, others don’t have thaopportunityty.

      peace,
      Rod

  4. dilay

    Hi! As people who has written before me, I am not a medical doctor. I am in the health business as an orthodontist so professionally I can’t be helpful to you. But what I am interested in my private life is healing the body, mind and soul trio in unity. All my life I have always tried to see the big picture. My dad being a medical doctor and my mother (R.I.P.) being a nurse helped things to align and enlighten in front of me more easily.
    My suggestion would be first finding a medical persona who is doing what s/he is doing not just for money but that is what life to that person is. I know I am approaching your problem a bit differently, but maybe rather than trying to find a diagnosis you should seek for a new doctor in your area more seriously.

  5. Sista

    I will start by saying I am no expert, but I am interested in wellness. A friend spent years & a huge chunk of money (allergy tests, naturopaths, homeopaths, psychiatrists, medicines that were incorrect…) figuring out an Eczema problem. One day, after having kept a journal of foods consumed, she self diagnosed the problem. Gluten intolerance!
    It sounds like in your case there may also be a common link you have not yet found.
    Did you actually do a cleanse or treatment for Candida?
    Some foods can actually carry their own form of yeast.
    Eliminating refined sugar from your diet is very important.

    Have you consumed alcohol during these episodes?

    Perhaps looking into the mold factor may be a valid pursuit. Have you charted the months that the illness strikes? Where you have been at the time?

    Lactose intolerance is clearly not the case, if cheese is okay.

    I had a very hard time digesting proteins at one time in my life. It was suggested to me to start taking digestive enzymes & sure enough, my body was not producing enough.I had gastro issues for two years prior.
    Recently I saw an ad for a pill to help with ringing in the ears. It was geared toward circulation. I am not suggesting the pill, but rather exercise to increase blood flow, even deep breathing would help if you are unable to exercise. Magnets also increase blood flow.

  6. Dave

    As the others, I’m not a doctor so don’t believe the stupid stuff I say.

    Could it have anything to do with the (non-)function of the missing gall bladder? Being sensitive to fat content of foods & having to avoid excess fat is not necessarily un-related to that, is it?

    Other stuff:

    The following pdf on heart problems doesn’t sound like what you described, except for the very interesting part about the ears:

    http://pmj.bmj.com/content/69/810/300.full.pdf

    It’s interesting to note that problems involving the vagus nerve, or serious distress near the vagus nerve, can cause referred pain in the ear. The internal organs and the ear are not un-connected, but “share an electrical circuit” through the several branches of this nerve; and something wrong in or near the internal organs can make your ear hurt even though the ear itself is apparently fine.
    (Read any good reference on the vagus nerve for more specifics.)

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