Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Archive for the ‘Talking to the Brick Wall’ Category

Seeing and believing

with 4 comments

Recently I had a visit from my parents. I have a bit of a blind spot with my parents in that I can never tell whether they are actually listening and taking on board what I say or whether they are just indulging me and going away thinking ‘what a crazy daughter we have’, which doesn’t help my relationship with them. What I do know is that they totally ignore everything I say to them.

I was once talking about my parents and bemoaning that they didn’t listen to me even though I had been making great bounds in fixing my fibromyalgia when they were still suffering from problems. In reply to this, a female friend I had thought understood cut me hurtfully with the patronising remark, “I know you believe you are right, but other people can make up their own minds you know.” It has echoed through my head ever since, along with a variety of painful “hypochondriac” and “get over it” remarks from people who are quick to judge but just don’t know what they’re talking about. It seems, sadly, that seeing isn’t believing for some people, even family and supposed friends.

One piece of news that upset me was that my mum let slip she has been taking statins. This is after she told me, “I’m not taking that rubbish,” a few months ago. At the time I got very angry and had a big rant about how dangerous and ineffective they were and made her promise she wouldn’t take them, and explained exactly how the side effects would be very bad for her condition in particular. Some dynamic young whippersnapper of a doctor has persuaded her otherwise. Her cholesterol is barely even elevated, and cholesterol lowering per se has never even shown any benefit for women. I consider it a particularly risky approach for my mum, as she has brain damage and muscular coordination problems from a haemorrhage a few years ago, and some recent nerve damage from an operation that went wrong. Her slightly high cholesterol would normally be helping her brain and nerves to repair themselves. Statin induced changes in liver function and muscle function are the last thing my mum needs.

When I tried to point out a few very hard and certain facts about cholesterol – such as that low cholesterol levels and statin use both increase the risk of cancer, depression and suicide, my dad flat out said, “well it’s very interesting but I just don’t believe you.” Which he has never said to me before, but I was glad he did because it felt like he was telling me the truth for the first time ever. It brought back to me the “I know you believe you are right,” comment above with painful clarity. I love my parents dearly, but it makes me wonder whether they think I just read absolute shit on the internet and regurgitate it like a monkey – and that what I know is intricate, complicated and often contradictory science, others regard as my own personal dungheap religion invented in my little cracked, warped head.

My mum also has high blood pressure, something she’s had for most of her life and she probably inherited from her mum, and she’s been put on medication for that, although the medication doesn’t appear to be working. She asked me what vitamins and minerals she should take to lower her blood pressure and I reeled off a list that began with magnesium. I then told her to avoid vasoactive chemicals in foods. They both perked up and looked interested when I said this, like it was the answer to their problems. Then I said that amines, glutamates and salicylates were the most important vasoactive compounds in foods, at which point they both looked really disappointed and their eyes glazed over as if they were thinking an internal “oh, that again.”

So I rather crossly sent them away with a copy of Anthony Colpo’s The Great Cholesterol Con in the hopes that they will at least see sense about statins. Of course I know they are not going to read it. Duh!

Advertisements

Written by alienrobotgirl

24 August, 2007 at 2:19 pm

I'm not back yet (part two)

leave a comment »

I guess part of the reason I disappeared over the last few months is that I was feeling fairly worn down with the whole thing. I wanted to find some sort of a solution to this problem, though ever since I started I’ve had the sinking feeling that it’s a part of my biology and hell, high water and wild horses aren’t going to do the slightest thing to change it. I’m not going to change the world or its eating habits either. The best I can do is try and spread the word as far and wide as possible so at least some of the most inquisitive, resourceful, and open minded people are able to figure out the causes of their ill health. Instead I got tied up in the minutiae of trying to help every individual try to figure out the cause of every little reaction they had so they could avoid doing the elimination diet and testing things properly.

People always have to do their own thing. People hate doing the elimination diet. People make exceptions for their favourite foods, or foods they think are nutritious. They take vitamin megadoses, or vitamins they’ve been told to avoid. They take probiotics that half the time make them ill. They try chelation therapy and when they react to the DMSO they think it’s because they’re moving mercury out of their bodies. They try to eliminate one chemical at a time and get locked into an either/or mentality. They make endless mistakes with what they can and cannot eat. They bitch about food not being tasty. They bitch about not having anything to eat. They become obsessed with eating foods that they should be using caution with, and then don’t understand they’re self-medicating their addictions. They become enamoured of the dubious “you need to eat more salicylates not less” theory of salicylate intolerance. They give their good money to bad quacktitioners who sell them NAET, hypnotism, acupuncture, and homeopathic cures. Belief is a very powerful thing. At the first sign of becoming sick, they bottle it and start using non-failsafe medications and herbal remedies. If they get sick, they blame the elimination diet and decide salicylates must be good for them instead of acknowledging the fact that their body is in turmoil and needs at least three months to reset. And they never, ever question the idea that fruits and vegetables are good for you – that the “wonderful antioxidants” they contain are the exact same reactive compounds that are making them ill.

This is pretty much why I needed the mental holiday. Not because I’m upset or having a rant about what is inevitable and a part of human nature and what we all have to go through (I went through it all too), but because I was so tired of going over old ground. When I have to say something more than about three times, I start to feel stupid and embarrassed at having had to say it again. I never know when I’m patronising people or talking over their heads. It’s just the way I’m built. Aspergers. I’d make a bad teacher.

That’s why when I get back on the case I’ll have to try hard to restrain myself from unnecessary posts and interactions with people in order to give myself enough time to get the information website updated and completed. Now I come back to look at it, I can see tons of errors and things I want to change. For example, salicylate, amine, and glutamate intolerance isn’t merely about detox or inactivation of the compounds involved. It’s also about inflammatory processes, about genes that effect neurotransmitters, and a kind of a sensitivity I can’t quite explain but seems to be integral to autism, asperger’s, ADHD, fibromyalgia, and other related conditions. I think it’s something that deserves a “syndrome” title – like “food chemical intolerance syndrome” – or “feingold syndrome”, except it isn’t necessarily ultimately about food, but an integral weakness or difference that is expressed when exposed to certain chemical, atmospheric, environmental, emotional, and food triggers.

I think it’s genetic, or at the very least congenital. I don’t think anymore that in some people might have anything to do with vitamin deficiencies, or with toxins like mercury, or with gut flora, or any other vague possibility that people have theorised. I think it is primarily a modern syndrome. I think it has something to do with our evolutionary diet being low in chemicals, and our evolving in a highly pressured, dangerous environment in which survival of the fittest is survival of the brainiest. I think it has something to do with eating a diet consisting almost entirely of fatty, fresh meat and bland root vegetables, and that’s why we do very well on this diet and very badly on a modern “healthy” diet. I couldn’t care less what various native tribes eat in obscure regions of the world where these genes probably haven’t propagated, as I think it’s fairly irrelevant. Dr Price did not in any case study the health of people beyond their ability to fend off infections and the quality of their bone development. This syndrome is far more subtle than that.

As I have always said, we are all affected by food chemicals beyond a certain point, and that point isn’t particularly high, but some people are particularly badly affected by them and they are different in some fundamental way that cannot be summed up and pinpointed with one gene, or two, or three, but perhaps a small, correlating group of genes. Is autism caused by food chemicals? Or do food chemicals affect autistics particularly badly? Is our inherent hypersensitivity to our environment caused by the food chemicals, or does this inherent hypersensitivity make us sensitive to the food chemicals? Is the hypersensitivity just a different unrelated aspect of the genes involved? Who knows?

Written by alienrobotgirl

27 July, 2007 at 5:18 pm

Coming up against a brick wall

with 4 comments

I tried to communicate with a couple of people on the native-nutrition board recently, but they were having none of it. One is taking a lot of salt and vitamin C. I believe from her other symptoms she is a possible candidate for food chemical intolerance and I hoped she would try the diet, at least in order to rule it out (she has been diagnosed with lyme disease – something I always have questions about). Adrenaline (for which you need salt and vitamin C) is good at masking the effects of food chemical intolerance symptoms, but it is not a cure. Sodium bicarbonate would be more effective. It did not surprise me at all when she mentioned this new symptom, because every time she mentions a new symptom, she fits more and more the food chemical intolerance profile.

The other recently complained of excess sebum and ridiculously greasy hair. Again, I’ve been there and it’s no surprise to see this symptom in someone I already suspected had food chemical intolerance. Before I discovered failsafe, I spent two years asking myself: why is my skin and hair so appallingly greasy? Am I a teenager? Have I got excessively high testosterone levels? What the heck is going wrong in my body when I’m eating such a “healthy” natural diet?

This week I’ve been sneaking: I’ve been having a caffeinated coffee every day – partly because it helps me lose weight, and partly because it fuels weight-lifting at the gym pretty effectively. Four days in I realised I was addicted to caffeine again and if I stopped I would have a completely useless day where I was knocked out by a migraine. I also realised my face was starting to flush again. Caffeine has that effect – but also salicylates, also in coffee. Day five, and after being clear of dermatitis for several months, I’ve a patch appeared above my mouth. Interesting how quickly it happens. Something else I’ve noticed is that my back, which had become very firm and pain-free, has started popping and cracking again, and I’ve somehow hurt my knee very easily whilst swimming.

On the subject of communicating with people, I have a friend who I was drawn to because she seemed to be similar to me. She has Obsessive Compulsive Disorder and has funny routines for her kitchen. As a child she had frequent ear infections and had to have grommits, and was deaf until she was a teenager. She has strange problems with her eyes which she blames on an overdose of malaria medication when she was a teenager. She was a very rebellious as a teenager – one might say she had Oppositional Defiance Disorder – to the extent her parents sent her away to a foreign country. She gets migraines, and frequent infections. Her brothers and sisters all have moodswings and problems of their own (one – oh so fittingly – swears by a macrobiotic diet). She has a tendency to make rash choices and spontaneous decisions. She has a three year old daughter who gets frequent ear infections just like her mother did. Her daughter overheated and had a seizure last year. She also has lazy eye (amylopia), which is a brain/laterality problem closely related to strabismus (deviating eye), both of which are food intolerance associated. I noticed last year that she gets hyperactive, naughty, and tearful approaching mealtimes, and is off in her own world some of the time. It’s also a big battle to get her to go to sleep at nights. In other words, there are a lot of indicators.

This seems to me a fairly clear example of a condition running in families. It also seemed clear to me at the time that whatever I had wrong with me, my friend also had wrong with her. Because she is a pescatarian and often vegetarian, and because I am an ex-vegetarian who now eats almost 100% animal foods (though more of these calories come from eggs and dairy than meat), it has been very difficult for me to broach the subject with her, and I’ve repeatedly dropped matters despite having more answers because she’s very independent and has this ODD-style tendency to push back deliberately when people push her.

My friend is determined to be ‘relaxed’ and ‘not feel guilty’ about her diet, because her mother suffered from anorexia. Her partner, who is quite charismatic, does not believe that diet affects people’s health, which does not help matters. My friend regularly eats MSG in Quorn, artificial colours and flavours in ostensibly “healthy” foods like yoghurt and other processed foods, drinks tea, gets lots of sulphites in wine, and eats a lot of vegetables and fish. In short, it’s a very high-chemical, high mercury diet. Of all my friends, trying to talk to her about diet has been like coming up against a brick wall. Despite trying hard not to interfere, she read something on my other blog a few months back and decided it was about her (it wasn’t), and I was telling her what to eat (I wasn’t). When I wrote to tell her I had finally cracked my problems and I was getting better on failsafe, the response was, well, not pretty, and, being rather hurt, I haven’t spoken to her since.

How do I fix this?

Written by alienrobotgirl

2 September, 2006 at 7:58 pm

Posted in Talking to the Brick Wall

Tagged with

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?

Written by alienrobotgirl

15 August, 2006 at 2:09 pm

Posted in Talking to the Brick Wall

Tagged with , ,

Diet intolerance

with 2 comments

This is a condition suffered by individuals in reaction to logical dietary choices on the part of others, which they the sufferer cannot comprehend.

Symptomology

The condition is characterised by violent knee-jerk reactions to dietary choices that contradict the individual’s existing world-view of what is and is not ‘healthy food’. Scientific and nutritional understanding of the constituents of food and their biochemical impact on the body do not figure in this disorder, which is purely emotional.

‘Healthy food’ is by definition a politically-loaded term that evokes varying reactions in the afflicted individual ranging from disgust, horror, shock, judgementalism, self-punishment, and guilt, through to approval, admiration, and smugness. The afflicted individual does not react based on the taste of the food being judged, for example, revulsion, nausea, salivation, hunger and enjoyment do not figure in this disorder.

Diagnosis

An individual suffering from Diet Intolerance can come from any walk of life and regard any diet as ‘the correct diet’. They can often be identified by their use of the following erroneous and loaded statements:

  • Any diet which cuts out a whole food group is not healthy
  • You should not cut out carbohydrate because your body needs it for energy
  • Cutting out fruit and vegetables means you will miss out on all of those wonderful “phytonutrients” and “antioxidants”
  • Meat makes you aggressive
  • All that fat and cholesterol are going to give you heart disease
  • Fruit is nature’s candy
  • Cutting out this food is unnatural
  • How can you eat that greasy food?
  • Vegetarians are much healthier than meat eaters
  • You should focus on eating a ‘sensible’, ‘healthy’ diet to lose weight, instead of following ‘fads’
  • If we didn’t eat any food that was supposed to be bad for us we would all starve
  • There must be something very wrong with you if you can’t eat a healthy food like that
  • Go on, just a little bit won’t hurt
  • Focussing on diet is not resolving your ’emotional issues’
  • You know this is all in your mind don’t you?

The condition is characterised by judgementalism, patronisation, and sneering. Sufferers typically look down on others as inferior human beings and regard them as being in some way mentally impaired for failing to agree to the sufferer’s terms of what constitutes ‘a healthy diet’. They may:

  • Be prone to judging other’s physiques and finding them lacking
  • Obsess about their own physique
  • Themselves suffer from a real or imagined weight problem or problem with their figure
  • Regard severe restriction, dieting, or self-punishment as admirable
  • Regard the enjoyment of food as a form of gluttony
  • Regard those who are overweight as having ‘no self-control’

Furthermore, sufferers are unable to distinguish between their own choices and other individual’s choices. For example, a sufferer who hears about another’s diet which contradicts their own way of thinking will often assume that the other is judging them for failing to follow a diet identical to their own. The resultant feeling of inadequacy can result in unprovoked attacks against the other’s diet or lifestyle.

Pathology

Many, many individuals suffer from a very mild form of this disorder which manifests as flippant bitchiness, or regarding others as ‘a bit bonkers’. Whilst this is not in itself pathological, it can become so under certain circumstances when the sufferer feels under pressure (real or imagined) to acknowledge that they may not have an ideal diet, figure, weight, personality, or the mental capacity to understand why this may be so, despite their determined efforts to produce perfection.

Treatment

Treatment consists not of pointing out the sufferer’s affliction and inadequacy, but instead focusses on demonstrating to the sufferer that no one else actually cares how much they weigh, what they look like in jeans, or what they like to eat. Once individuals realise that they are not in themselves being judged, they are usually able to stop judging others in return.

Written by alienrobotgirl

27 July, 2006 at 12:53 pm

Picky eaters

leave a comment »

How lovely – someone actually emailed me something nice today:

Your article was amazing to me… until I read it, I thought that my 8 yr old son was the only child in the world that was that picky. He will actually dry heave at the sight or smell or feel of many foods in his mouth. Thank you for helping me to understand how he feels. I, like your Mum worry about his eating habits. You are the first person who has ever understood his eating. Thank you!!!

As you might imagine one or two people (for whom vegetables are a veritable religion), had a rather violent negative reaction to the contents of “why kids don’t eat their greens“, which seemed quite an innocent article to me when I wrote it. I’m glad it’s finally struck home for a mother like mine, who is just trying to feed her child well.

Written by alienrobotgirl

8 July, 2006 at 2:46 pm