I went to a local atheist meetup group for awhile.  I didn't have a good time there, partly because there was a dogmatic pathologist there who gave me grief with his derogatory comments. 

I was chronically somewhat sick and I didn't know why, and I spent a lot of time online trying to figure out how to make myself better.  

This pathologist basically informed me that I was foolish to try to understand or solve my own medical problems, since I don't have medical training.

Yet the opposite turned out to be true - that it was crucial for me to take the initiative to figure out my problems. 

The fatigued and fuzzy-headed feeling I had was consistent with allergies, except that in the beginning, I was only sick during the early part of the day, and I felt ok in the evening.  My allergic reactions hadn't been like that in the past.

I went to various doctors.  I got all sorts of testing from my family doctor, but no explanation.  They did find out I have Hashimoto's (autoimmune thyroid disease).  But the result was that I wasted a year hoping that optimizing my thyroid levels would make me well, as the doctor slowly adjusted my dose of thyroid hormone. 

I went to a couple of allergists - only to find that according to allergy testing, my allergies had mostly disappeared!  One thought I might have a zinc deficiency and I took a zinc supplement for a few months, which didn't help.  He gave me a brain MRI to see if I might have a brain tumor, which can cause changes in consciousness - but that was normal. 

I tore apart large sections of my house because the allergist thought I might be sick from mold.  He apparently felt you could be sick from mold even with negative allergy tests, even though he denied that could happen with other allergens. 

But that also didn't make me well. 

I stayed in a no-pets hotel for a few days, thinking I might be sick from my house.  But that didn't help either.  Later I found there was mold in my home grain mills.  Cleaning them did help some (mold in food can make me very sick). 

I thought - for all this laborious search for mold, there is one allergen I KNEW was all around me, in great quantities - dog dander, since my dog was living in my house.  Finally in June 2011 - I had been sick about 4 years by then - I went again to stay in the no-pets hotel. 

This time I did get well after 5 days.  Then I went to the SPCA and cuddled dogs for a couple hours. 

I got very sick!  I was walking very slowly after that, my mind was jumbled, I couldn't read very well.  I spent a lot of time in bed the next few days, sleeping in the hotel. 

An excellent medical test!  It told me I had some kind of allergy - ruling out at one stroke all sorts of other explanations like a brain tumor or a thyroid problem. 

Later I went to the motel again, got well again after 5 days, then tried a much more mild exposure to a dog, in different circumstances.  Again I got sick - so I knew for sure it was dogs I was so allergic to, not something else. 

The diagnosis is crucial.  And I had to do that for myself!

After that, I read a blog by a CFS (chronic fatigue syndrome) sufferer.  She said she had been diagnosed with immune system activation - that was all she knew about what was wrong.  I kept telling her that the problem might be some kind of allergy - that you can have "local allergies" that don't appear with allergy testing, they're local in the nose; that delayed food allergies cause CFS-like symptoms; that she might have celiac disease or some other autoimmune problem.  And that if it was an unconventional allergy, diagnosis would be mostly up to her. 

But it seemed to fall on deaf ears.  She was relying on medical research to find the answer (even though there may be multiple causes for CFS), relying on doctors and their tests, and not spending time trying to figure it out. 

I have spent most of my time sick since 2007.  It's a horrible waste of my life, I'm slid in my 50's while being sick ...  And I have wondered, how could so much sickness have been avoided? 

Partly, I was delayed by being a passive patient - waiting while the doctor tweaked my thyroid meds for a year, hoping it would help, etc. etc. 

And I wasn't able to think well when I was so sick, living at home.  Allergic rhinitis is known to cause cognitive impairment. 

I would think, when I was so sick: maybe I should go traveling - rent a car and make a trip with my dog, then another trip without my dog, and see what helps ... But I felt too sick to drive safely or to do the work to organize a trip. 

Probably, the same was true of the CFS sufferer I met online. 

Now I've finally taken drastic action to get well.  I put my dog in a kennel, I moved out of my house and after a lot of chaos, I rented a NEW mobile home (no dog or cat dander in it), in a park that doesn't allow dogs, and no cats live nearby. 

But still I've been sick almost all the time from allergic reactions.  Mold on food, dogs in cars that pull up next to me ... 

Having an allergic reaction almost all the time for years at a time, messed up my body.  In those years when I was sick without knowing why, bad things were happening to my body, that made my allergies a lot worse and did other unknown damage.  Maybe the cognitive impairment caused by allergies, also causes brain damage long-term. 

Being chronically ill without knowing why, has to be regarded as an emergency, and I could perhaps have suffered less if I hadn't tolerated being sick for so long.  I spent a lot of time reading The Road to Reality in 2009 for example - when I was sick and didn't know why - and maybe if I had devoted my effort to figuring out my sickness instead, I wouldn't have been sick so long.  

This is rather unique to my situation, with poorly understood autoimmune/allergy problems.  Likely if someone has cancer, it's more a temptation than a help, to spend a lot of time trying to solve it.  A lot of cancer sufferers waste their money and time going to various clinics, hoping to find in one, a miracle duck with magical quacks. 

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Comment by Luara on September 19, 2013 at 9:40am

Doctors continually have to "do another test" for two reasons - they really don't know that much and they also want your money! I might add in todays world that they are also afraid of being sued by you.

Usually it isn't the doctor who's getting paid for the test, but a lab.
Agreed there's a good deal of CYA medicine. But it would be nearly impossible for a patient to know if a test is necessary. That requires medical experience. If a test come backs negative, people may conclude their money was wasted - but the doctor needs to screen for problems that may be uncommon. 

I'm more critical of "alternative" types, who do no testing or bogus testing.

Comment by Michael Penn on September 19, 2013 at 8:51am

Doctors continually have to "do another test" for two reasons - they really don't know that much and they also want your money! I might add in todays world that they are also afraid of being sued by you. Such is the sorry lot of modern medicine, so your level of good medical care is limited.

For the most part, not being made of money, I have treated my own ailments through the years - and I've done it very successfully. The trick to doing this is to be able to realize symptoms and also know when you really need to see a doctor. Once I had an ambulance called for a man I did not know, who complained suddenly of feeling cold, numb, and tired as he did his carpentry job. It was confirmed later that he was having a heart attack.

All homopathy is not hocum, and you simply know how to deal with something. I can remove warts, corns, and the like and some today even look at me strangely thinking this borders on "witchcraft." What it means to me is not having to be charged $800 for a procedure that should cost $30, and this big charge is there because your doctor is milking your insurance. A year ago I had to have a doctor remove a pea sized growth simply because it was on my back. He did it all in 15 minutes, and sent it off to check for cancer. He appeared to want to scare me with the idea of cancer, and I told him it would have been removed with liquid nitrogen in 1980. It would cost less than $30. He hit my insurance for more than $800 (it was not cancer) and I changed doctors soon after.

My basic advise is to be smart enough to know when to go to the doctor, but if nothing is broken then don't try to fix it. I once had a girlfriend who hand to take every new test that came along just to see if she had that disease or not. I ask you - why would she think she had a disease? Why would you have a disease that is common to Chinese yak herders?

Comment by Luara on September 17, 2013 at 5:29pm

I haven't found that doctors do a very good job in the areas where little is known, when they don't have their usual tools like lab tests to rely on.

That's when they start brushing people off, by telling them it's all in their head, or referring them to "alternative" types.

In 2003 after I did a hypoallergenic elimination diet and food challenges, I got sick after food challenges with milk, all foods in the grain family that I tried, oranges and apples.  There was also a strong psychological component to the food reactions.  I felt uptight, paranoid, sometimes depressed, liable to sudden anger. 

Because the foods included gluten grains, I thought I might have celiac disease.  So I went to a gastroenterologist. 

The gastroenterologist wanted to refer me to an environmental medicine doctor, because of the psychological components of the food reactions. 

I wondered, why would the gastroenterologist want to exclude people with psychological aspects to their food reactions, from his practice?  Gastroenterologists deal with food reactions all the time.  Not very much was known about psychological aspects of allergic reactions then - and little is known now - so he could easily acquire as much knowledge as anyone else!  And it's not strange that someone would have an immune reaction to food that has psychological aspects - there are many neurons connected to the gut, a sort of "second brain" in fact, and histamine (generated in allergic reactions) can act as a neurotransmitter.  So why not learn how to help people with problems where little is known? 

Without lab tests to use, many doctors are at a loss and they want the patient to go away, abandoning the field to various alternative practitioners, who give some useful advice, heavily larded with quackery.  I didn't go to the environmental medicine doc because dubious and perhaps harmful treatments might be foisted on me. 

Comment by Luara on September 17, 2013 at 4:40pm

They would draw off blood, factor it, expose component cells (I think it was the lymphocytes) to cancer cells to stimulate a response

That is interesting - so apparently they were trying to provoke an immune response to the cancer somehow.
I wonder why that immune response wasn't available in his body - if the cancer shields itself somehow? 

Comment by jay H on September 17, 2013 at 4:13pm

Actually he had quite a rough treatment. He had to lower his testosterone, The kidney failure was life threatening and for a time even most vegetables would put too much of a strain on his salt balance.

The cancer treatment was rather complex: They would draw off blood, factor it, expose component cells (I think it was the lymphocytes) to cancer cells to stimulate a response, then reconstitute his blood and put it back in.

After several months of this, cancer activity in his body dropped below measurable levels.

Comment by Luara on September 17, 2013 at 2:12pm

Unfortunately for many people trying to medically self help, it means going to the internet and believing every quack-a-loon that comes along.

Or being sloppy about their self-diagnosis, or jumping to bizarre conclusions. A lot of the stories about things I hear that people decide are their problem, are pretty weird. People blaming the water, people blaming the natural gas, people blaming the electric lines ...  All that is possible, but unlikely. 

And deciding doctors have nothing to offer if they're wrong on something. To me this doesn't say that doctors and medicine are incompetent - but rather, that there's a lot they don't know, and in those areas they don't know much about, where there aren't good lab tests, there may be a place for self-help. 

Together they managed to get the husband into a radical experimental treatment program. Considering he was pretty close to dead with kidney failure from the disease a year ago, he is doing remarkably well.

Ouch.  Sometimes men with prostate cancer get something that lowers their testosterone (or something like that).  Rather feminizing. 


Comment by jay H on September 17, 2013 at 1:29pm

You approached it correctly. Unfortunately for many people trying to medically self help, it means going to the internet and believing every quack-a-loon that comes along.

Here's a similar story to yours. My ex wife is what I'd call an 'amateur doctor' in that she's deeply self educated in things biological and medical. Anyhow her husband developed prostate cancer which went untreated for too long because their old doctor was completely incompetent. She started studying current and experimental treatments and they found a new doctor who was very willing to converse with her on a medical level. Together they managed to get the husband into a radical experimental treatment program (he was marginally close to the admittance requirements, if it wasn't for the doctor's cooperation he would not have gotten in). Considering he was pretty close to dead with kidney failure from the disease a year ago, he is doing remarkably well.



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