Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

More adventures in internet land

with 2 comments

Before I went on holiday I was trying to start up some dialogue with the Weston A. Price Foundation on the native-nutrition messageboard. I don’t think it really worked. I had some interest, but in general, people on that board are simply too prejudiced about natural foods vs. artificial foods to consider the idea that fruit and vegetables and aged meat can actually be bad for some people.

I rapidly got sick of nutters telling me I have lyme disease (in my opinion, lyme-disease-misinformation-disseminators belong in the ninth circle of hell, the level below candida-misinformation-disseminators). When are people going to realise that lyme disease testing and treatment is all a big scam? The antibiotics people are put on to treat “lyme disease” give them the symptoms of “lyme disease”. The non-profit websites that have sprung up all over the place are financed by drug companies who are making cash out of lyme disease testing and treatment. The Western Blot tests are appallingly inaccurate (false positives abound in lyme testing). Some people are absolutely convinced that lyme disease is “the cause” of fibromyalgia, chronic fatigue, multiple sclerosis, epilepsy, you name it. No. Lyme disease is the cause of lyme disease. It should not be confused with other conditions.

One woman started emailing me off-board to accuse me of being “hostile” for not accepting her lyme disease theory (after I had given her a sarky reply on-board for her basically calling failsafe a dangerous diet – some people are just horrified by the idea of not eating fruit and vegetables).

I gave up trying to help the original individual who had asked for help and listed her symptoms under the umbrella term “fibromyalgia” (her symptoms sounded much more like classic food chemical intolerance than the fibromyalgia variety). I’m afraid you need to be pretty intelligent to be able to do failsafe, especially without support. Otherwise you are just going to get tripped up by all kinds of things you don’t understand, or you’ll cheat, and you’ll fail before you even get anywhere.

I feel like smacking my forehead every time I go near the messageboards I read. I’m going to have to unsubscribe from most of the groups before I burst with frustration. Native-nutrition is full of individuals who have food chemical intolerance related conditions asking for help (for example, today “head noise” is a topic of discussion, with symptoms like insomnia, crankiness, hypnic jerks and pounding heart beat). But do you really think they would listen to me if I mentioned the word “tyramine” to them? Well, they’d listen until I mentioned the words “elimination diet which cuts out most fruit, vegetables and aged proteins”). It hurts to know there are people out there who could be helped, who simply won’t listen to the answer they’re given because it contradicts their preprogrammed dogma about what foods are “healthy for you”, or because it simply sounds like too much hard work.

For example, there is someone I’ve been in contact with who has a definite self-diagnosed sulphur intolerance issue. Now, if you have a sulphur-intolerance issue, you probably need to try the failsafe diet. The same individual has a huge range of food chemical intolerance indicator symptoms. Now, I can show this person a piece of pure biochemistry, but though I explained to him that his symptoms would be relieved by the diet, he refused to even consider doing failsafe because he would “have to live like a monk”. Ironically, doing everything from juice-fasts to the Optimal Diet does not count as “living like a monk”. I recently sent him some pretty important information about sulphur intolerance, but rudely, he has not replied to me.

A subsection of people who do failsafe regain their tolerance for salicylates after doing failsafe for as little as six months. Apparently six months is too long for some, who would rather “treat” themselves – and their children – based on unproven and sometimes completely erroneous theories. The number of parents of autistic and ADHD children who I have come across who would rather megadose their kids with dangerous and even harmful vitamin formulas or use other dubious methods based on wild stabs in the dark is amazing. By contrast, the parents of such children who write on the sulphur groups demonstrate advanced knowledge of biochemistry, and a real understanding of how to perform controlled scientific experiments. I feel pretty sad for the kids whose parents don’t care enough, or don’t try enough, to get that far.

I think the only way I am going to get the message across is with a dedicated all-singing, all-dancing biochemistry website. Sigh.

It took Sue Dengate something like eight years to be willing to accept that salicylates were the cause of her daughter’s uncontrollable ADHD. I wonder if it will also take WAPF that long?

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Written by alienrobotgirl

15 August, 2006 at 2:09 pm

Posted in Talking to the Brick Wall

Tagged with , ,

2 Responses

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  1. I’m not one of those people who goes around telling people they have Lyme disease, but your statement about Lyme being a “scam” is totally irresponsible. If you care enough to investigate the science behind the controversy, see Wikipedia’s Lyme article which is full of medical references and explains both sides well. Best wishes.

    Anonymous

    19 August, 2006 at 5:44 pm

  2. I already read it (I do actually do my research before posting about a subject). And you will note that the Wiki article describes lyme as a “controversy”, falling into neither camp.Did I say lyme disease didn’t exist? NO!!! I said lyme disease is the cause of lyme disease, not fibromyalgia, MS and epilepsy! This a perfectly justified statement!In my opinion (which I am perfectly entitled to), lyme is overdiagnosed and widely misdiagnosed all over the internet by people who have no medical training whatsoever.I repeat: people who indulge in telling other people they have lyme disease on messageboards after reading a dodgy website on the subject belong in exactly the same category of nutter as the candida-misinformation-disseminators. Furthermore, people need to exercise more skepticism when they read lyme websites that have been set up by people making cash out of lyme disease. What exactly is “totally irresponsible” about saying that???Learn to READ THINGS PROPERLY before you falsely assume I’m telling everyone lyme is a scam!!!

    Alien Robot Girl

    21 August, 2006 at 2:25 pm


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