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Munchausen by Internet

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Have you heard of this? It isn’t exactly in the DSM, but it’s an interesting concept.

Munchausen by Internet is a type of factitious disorder which utilizes the Internet’s easy access to a broad audience. […] The term was coined by Marc D Feldman, M.D., in 2000. It specifically relates to Munchausen Syndrome – where a sufferer fakes or induces illness to gain attention and sympathy – and Munchausen Syndrome by Proxy (MSbP), where the sufferer creates fake illnesses in others, or physically harms others. Sufferers of MSbP are often parents who inflict fake illnesses on their child, or children. Munchausen by Internet

Munchausen syndrome differs from hypochondria in that sufferers – or should I say ‘sufferers’ – actually know they aren’t ill and are faking for attention, where as hypochondriacs genuinely believe they are ill when they aren’t (or, in the case of man-flu, they believe they are dying when they get a cold).

Munchausen syndromes can be very serious. Beverley Allitt, the child-killing nurse dubbed ‘the angel of death’, who is imprisoned in a secure mental hospital not so many miles from where I live, is alleged to be a sufferer of Munchausen by Proxy. However Munchausen’s diagnoses are a point of controversy, poor Sally Clark, Trupti Patel, Angela Cannings, and many other mothers were wrongly accused and convicted of baby murder on the basis of a theoretical diagnosis of Munchausen by Proxy by the discredited paediatrician, Professor Sir Roy Meadow.

So let’s hear the stories behind Munchausen by Internet.

When Pam Cohen, a 41-year-old bereavement counselor, first heard about the Kaycee Nicole Swenson hoax, her first thought was Munchausen.

Kaycee was a 19-year-old Kansas woman who chronicled her painful battle against leukemia on a Web log. The site elicited a sympathetic following of well-wishers, who collectively grieved over Kaycee’s death on May 15.

When it was revealed that Kaycee was actually 40-year-old Debbie Swenson, a very-much-alive homemaker in Peabody, Kansas, The New York Times declared it an elaborate Web hoax.

But to Cohen, Swenson’s “hoax” sounded a lot like Munchausen by Internet, a recently identified mental disorder where sufferers go into chatrooms and other online communities, pretending to be gravely ill. Cohen, who became romantically involved with a Munchausen sufferer she first met in an online support group, describes the experience as “emotional rape.”

Munchausen Syndrome is the severest form of what is known in medical circles as factitious disorders, where a patient feigns, exaggerates or self-induces illness. Known among doctors as “black hole patients,” “ER jumpers” or “heart sinks,” people with Munchausen often go to desperate lengths to prove they are sick. They Think They Feel Your Pain

You know, about a year and a half ago there was an individual on the support forum who took up a lot of everyone’s time and attention and seemed intent on causing as much disruption as possible. She had alleged ‘reactions’ to totally non-reactive things – for example to phenolic plastic handles on cookware, i.e. to bakelite(!) At the time I simply thought she must be reacting to something in her diet and just humoured her. She was making so many mistakes I didn’t want to make her look even stupider.

Most tellingly, there was the fact that his life was so dramatic. That’s a key sign of what some have dubbed “Munchausen by Internet.” His mother died of cancer when he was a child. His father abused him. He was raped in his apartment, and then again, in the parking lot of the hospital where he supposedly worked. He threatened to kill himself if he didn’t pass his exams. His cousin was hit by a car – on his birthday. Despite the fact that a few days before Christmas the cousin was on death’s door, he recovered enough that he was home by Christmas. His friend donated bone marrow to two people (when I’ve been in the database for ten years, and haven’t been called once). He saved a Russian mail-order bride from a botched abortion. And much more. Taken all together, it just didn’t seem likely.

At this point, you’re probably thinking I’m a complete idiot for not catching on earlier. A Strange Case of Munchausen by Internet

The individual on our support forum took a couple of trips to the ER for absolutely frivolous reasons and made a huge deal out of this, as if her symptoms were life-threatening when they barely warranted a trip to a local doctor. Yet at other times she acted so blasé about it all. She had all kind of weird, warped theories about food chemical intolerance and it was very clear she didn’t even have a basic understanding of chemistry or biology, though she often tried to blind other forum members with long pseudo-technical ‘explanations’ to justify her strange theories. Her behaviour was so puzzling, contradictory, and erratic, that I questioned privately whether she was a hypochondriac. My other theory was that she was bipolar, to the point where she was experiencing thought disorder. She and a second individual, who at the time acted as her enabler, were the catalyst for my leaving the forum for several months. I was absolutely crushed by the experience.

In a study published in the Southern Medical Journal, Feldman describes four cases of Internet posers. In one, a “young woman” held a support group spellbound with the tale of her struggle with cystic fibrosis. Her dream was to die on the beach. That finally happened, according to a posting from the sick woman’s sister “Amy.” Group members picked up on the ruse when they noticed similarities in spelling errors in postings from Amy and from the sister who was supposed to be dead.

In another, group members were duped by a person claiming to be a 15-year-old-boy with migraine headaches, a blood disorder, and a seizure disorder — who also happened to be a fourth-year medical student. His deaf “mother” stepped in when members started asking questions, and warned them that the boy might slip into a severe depression if they kept it up.

“I became aware of these cases because people who felt victimized contacted me,” Feldman says. “I think their telling me was an effort to expunge their souls of this deception, but also to get professional advice to restore their groups.”

And there’s no doubt these storytellers can have an enormous impact on Internet support groups. Among other things, Feldman says, they can:

  • Create a division between those who believe the tale and those who don’t
  • Cause some to leave the group
  • Temporarily distract the group from its mission by forcing it to focus on the poser

“Overwhelmingly, these support groups offer a tremendous benefit to people,” he says. “[But,] as in other areas of our lives, we have to be informed.”

But figuring out who is faking may not be easy. The unspoken tenet of Internet support groups is acceptance, and many of those suffering from disorders like Munchausen do their homework — which is easier than ever, thanks to the web.

“The Munchausen patient used to have to go to a biomedical library and lug around these heavy textbooks,” Feldman says. “Now they can lie back in their chair and click here and there … and become more of an expert at esoteric medical diagnoses than a doctor.” Sympathy-Seekers Invade Internet Support Groups

Let’s face it. You can’t get more esoteric than food chemical intolerance. It took me years to figure out what was wrong with me. Most of the people I’ve come across who have this problem have spookily similar symptoms to me and I can tell instinctively that they are genuine sufferers because of the way they talk about their experiences. Sometimes, however, you come across people who just don’t add up.

Clues to Detection of False Claims

Based on experience with two dozen cases of Munchausen by Internet, I have arrived at a list of clues to the detection of factitious Internet claims. The most important follow:

  1. the posts consistently duplicate material in other posts, in books, or on health-related websites;
  2. the characteristics of the supposed illness emerge as caricatures;
  3. near-fatal bouts of illness alternate with miraculous recoveries;
  4. claims are fantastic, contradicted by subsequent posts, or flatly disproved;
  5. there are continual dramatic events in the person’s life, especially when other group members have become the focus of attention;
  6. there is feigned blitheness about crises (e.g., going into septic shock) that will predictably attract immediate attention;
  7. others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing. Munchausen by Internet: Faking Illness Online

I don’t know whether the individual in question had Munchausen by Internet, though reading through this list I can see she met most of the criteria. Due to her erratic emotional behaviour I am still leaning towards some kind of bipolar/manic scenario with a touch of hypochondria and paranoia thrown in. Whatever the truth, the individual had a major hissy fit when her theories were disproved, and she left the group. She later appeared on a more altie, less scientific forum where she was accepted with open arms by chronic lyme disease sufferers and GAPS dieters alike, having claimed to have ‘cured’ herself with vitamins. The story changed over time, and more recently she claimed to have ‘cured’ herself with aryuveda. Lately, she has ‘cured’ herself with (wait for it), the bacterial recolonisation of her gut.


Written by alienrobotgirl

23 September, 2008 at 10:39 pm

Posted in Quacktitioners

Aspirin-like compounds increase insulin secretion in otherwise healthy obese people

with 4 comments

And it’s supposed to be a good thing?

Chris sent me this great press release to deconstruct. If you’re in on the joke, it’s downright hysterical.

Aspirin-like compounds (salicylates) can claim another health benefit: increasing the amount of insulin produced by otherwise healthy obese people. Obesity is associated with insulin resistance, the first step toward type 2 diabetes.

Aspirin and other salicylates are known to reduce blood glucose in diabetic patients. New research accepted for publication in the Journal of Clinical Endocrinology & Metabolism reveals a similar beneficial effect among obese individuals by increasing the amount of insulin secreted into the bloodstream.

“The administration of a salicylate led to the lowering of serum glucose concentrations,” said Jose-Manuel Fernandez-Real of the Institut d’Investigacio Biomedica de Girona and CIBEROBN Fisiopatologia de la Obesidad, Spain, and lead author of the study. “These findings highlight the importance of further research on the possible therapeutic benefit of aspirin in the fight against type 2 diabetes.”

For their study, Fernandez-Real and his colleagues evaluated the effects of triflusal (a derivative of salicylate) on 28 subjects (nine men and 29 women). The average age of the participants was 48 years old and their average Body Mass Index (BMI) was 33.9. A BMI of over 30 is considered obese. During three, four-week treatment periods, the study participants received a 600 mg dose, a 900 mg dose, or a placebo once per day.

The researchers found that administration of triflusal led to decreased fasting serum glucose. Contrary to their expectations, insulin sensitivity did not significantly change during the trial. Insulin secretion, however, significantly increased in relation to the dose size.

In conjunction with the human studies, the researchers also conducted laboratory studies on insulin-producing cells (known as islets of Langerhans) from mice and humans. The researchers observed that triflusal significantly increased the insulin secreted by these cells.

Aspirin therapy has been recognized to improve glucose tolerance and to reduce insulin requirements in diabetic subjects,” said Fernandez-Real. “To our knowledge, this is the first study to show that salicylates lowered serum glucose in non-diabetic obese subjects. We believe that this effect was due to a previously unsuspected increase in insulin secretion rather than enhanced insulin sensitivity.”


The paper “Salicylates increase insulin secretion in healthy obese subjects” will appear in the July issue of JCEM, a publication of The Endocrine Society.”

Other researchers involved in the study include Abel Lobez-Mermejo, Ana-Belen Ropero, Sandra Piquer, Angel Nadal, Judit Bassols, Roser Casamitjana, Roman Gomis, Eva Arnaiz, Inaki Perez, and Wifredo Ricart. Aspirin-like compounds increase insulin secretion in otherwise healthy obese people

Were these scientists born yesterday? Aspirin therapy does not “improve glucose tolerance”. It just lowers blood glucose! If anything, it impairs glucose tolerance by inducing the release of too much insulin, which causes hypoglycaemia.

There are two types of diabetics; Type 1 and Type 2. Type 1 diabetics have an autoimmune condition characterised by low to non-existent insulin levels, high blood sugar, and weight loss. Type 2 diabetics have something called ‘insulin resistance’. They have high levels of insulin, high blood sugar, and weight gain. Insulin lowers blood sugar by pushing glucose into cells. T2 diabetics resist the presence of insulin, so they have both high insulin levels and high blood sugar. When doctors talk about improving insulin sensitivity, they are talking about decreasing the resistance to insulin.

Any endocrinologist (in fact, any diabetic) can tell you that insulin is a weight gain hormone. They will also tell you that the more weight you gain, the more resistant to insulin you will be. So why, why would you want to give a T2 diabetic more insulin?

Because you’re using the wrong criteria to assess their health!

Currently diabetes medicine is labouring under a sad misunderstanding. The misunderstanding is that most of the negative symptoms of diabetes are caused by high blood sugar, and that blood sugar must be kept under control at all costs. Unfortunately some of the negative symptoms of diabetes are actually caused by high insulin levels, not high blood sugar. This means that outdated drugs that actually worsen T2 diabetes over time are still being prescribed to T2 diabetics. In fact, Michael Eades MD posted on this subject not so long ago, describing how the large, well-funded ACCORD study has halted its rigorous blood sugar control trials in diabetics because the diabetics who were controlling their blood sugar the best (by raising their insulin levels even higher), were dying faster than the control group.

There are two main types of drugs that are given to T2 diabetics: drugs that increase insulin output (or actual insulin), and drugs that increase sensitivity to insulin. The first class of drugs includes the sulfonylurea drugs, which work to lower blood sugar by stimulating insulin release. The second class of drugs includes metformin, which works by increasing the body’s sensitivity to the existing insulin – that is, by reducing insulin resistance. Metformin is the drug of choice for T2 diabetics. Not sulfonylureas, whose side effects include weight gain. Duh!

So here we have this bizarre study of triflusal – which appears to be a drug without real a purpose other than to mimic aspirin – and researchers are looking for some use for it. Some bright spark who read a medical book once comes up with this. What’s the betting triflusal also causes weight gain and hypoglycaemia? Just the same as salicylates cause me weight gain and hypoglycaemia by inducing insulin release. I’m willing to put money on it.

Written by alienrobotgirl

30 April, 2008 at 11:28 am

Posted in Quacktitioners

Tagged with

Buzz off

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I’ve decided to tell a little story I’ve been keeping to myself for quite a while.

Not long after we started the FailsafeNT yahoo group, I communicated with a lady I knew from a different group who believed that she had candida. I convinced her to give the failsafe diet a try for her mysterious symptoms, and it worked wonders. She had spent a number of years believing that she had been suffering from candida, but on the diet the ‘candida’ just went away. She had been a member of a notorious alternative health yahoo group called candidasupport, run by a woman called Bee Wilder.

Shortly after this communication, I happened to glance at one of the new member notification emails I received, and I noticed that Bee Wilder had joined FailsafeNT and was busy lurking.

Great! Thinks I. This will be amazing. If Bee stuck around for long enough she would learn about how some people who have (genuine) candida are cured by the failsafe diet, and she will be able to communicate that to her members and she will be able to help loads more people.

Sure enough, soon someone was asking about candida symptoms. I tried to explain in the politest, kindest terms that sometimes people think they have ‘candida’ when actually they have food chemical intolerance, which can manifest as the same set of symptoms to those thought of as ‘candida’ amongst alternative health circles. And that other people genuinely do have candida, and some of these people are helped by the failsafe diet, because food chemical intolerance makes one very vulnerable to various skin and mucous membrane infections that often clear up on the diet.

Someone else on the group – a complete troll – deliberately decided to take me to task over what he thought I was saying. Because he doesn’t read things properly, he thought I was denying the existence of any and all infections – obviously Beauchampians are one of his bugbears – and he went of into an aggressive Pasteurian rant.

Before I could reply to this nonsense, Bee unsubscribed from the group. Obviously she had no desire hear anyone out and was rather intent on confirming her prejudices.

This is what Bee has been up to in the mean time.

On candidasupport, someone asked Bee what her opinion of the failsafe diet is, here is her response:

==>Unfortunately I know a group that believes a person should avoid salicylate and amine in foods, called the FailSafe diet, and I believe it is doing a lot of people a lot of harm. I don’t believe people should avoid “good foods”! Not only does it drive people crazy trying to avoid salicylate and amine in foods but also they are doing themselves a disservice by avoiding foods that provide so many health benefits. Many people think that if they react to a food it means they are intolerant or sensitive.

==>However if they are sick, have a depressed immune system and/or have candida they will be intolerant and sensitive to many foods because those exact foods are what the body needs to heal and they will create healing reactions. Healing reactions are not intolerances or sensitivities, they merely mean the body needed them so it went into gear using those foods to heal.

Fallacy #1 of the candida diet is that when you react to a food you are having a ‘healing crisis’ or a Herxheimer reaction.

==>I believe it is wrong to malign good foods. I don’t believe nature gets it wrong – good unadulterated foods are what your body needs most in order to build up the immune system and become healthy again, no matter what the cause, which is my diet plus supplements.

Fallacy #1 of the Weston A. Price Foundation is that nature ‘doesn’t get it wrong’. Unfortunately nature is not getting it wrong – salicylates are pesticides and are there to protect plants from predators. Just like cyanide. That’s why we don’t eat plants that contain cyanide, because rather than just getting urticaria or brainfog, cyanide can actually kill. Plants weren’t put on the earth by God just for humans to eat!

==>If such good foods cause symptoms, which I believe are healing reactions, a person needs to introduce them gradually so they are not overwhelmed by the healing reactions.

==>I’ve read a number of posts on the FailSafe group and I can see that most of those people do have candida. I know a lady who is riddled with candida yet she first went on the celiac diet and when it didn’t help her she also went on the FailSafe diet. She doesn’t have a lot left to eat and meanwhile she is getting sicker and sicker. I had a friend who died of cancer who wouldn’t listen to me that she had candida for 3 years until she was riddled with cancer, and she went the same route. That was when I took a long hard look at allergies and figured out what was happening – her allergy tests had so many foods on it there wasn’t much left for her to eat! She also thought she was intolerant of coconut oil, garlic, etc. because they made her sick. Little did she know. It’s so sad. 37177

Actually, only a minority of people on ‘the failsafe group’ have candida. Some have thought they had candida but it turned out that they didn’t. Others really did have candida. Most people didn’t have candida. Urinary tract infections are actually more common (although I bet Bee thinks they are caused by candida).

Fallacy #1 of the critics of the failsafe diet is that you ‘don’t have a lot left to eat’. This is a basic confusion between quantity and variety that most first graders are able to distinguish between.

If the first individual to which Bee refers to above is who I think she is, she was actually doing extremely well on the failsafe diet. Unfortunately she went to an ‘allergist’ (quack) who told her she had dozens of food allergies. She reintroduced non-failsafe foods and became sick again. At that point she told us she was back on failsafe. I have no idea where she is now.

But get this: Bee thinks cancer is caused by candida. Sigh.

Someone asks Bee what she thinks of the Feingold diet, does she disapprove of that?

==>Yes, Christine I do. Whenever people start warning against God- given food I cringe. I wonder how they think our ancestors ever survived because they didn’t avoid these things, so it doesn’t make sense to me. 37195

Here we are with fallacy #1 of the Weston A. Price Foundation again. Food is apparently God-given. Aside from the fact that our ancestors didn’t eat a high salicylate or amine diet, food chemical intolerance doesn’t usually kill. It also comes with some devastating evolutionary advantages for humans, like increased intelligence.

==>Christine I’ve read Dr. Price’s book “Nutrition and Physical Degeneration” which I believe is the bible for natural nutrition. He found many primitive groups throughout the world who were healthy on foods direct from nature. I think it is insane to suggest otherwise. It’s like the new stuff on the market for candida, which wern’t known about or existed when I cured my candida 20 years ago. My response is “how in the world did I ever cure my candida without that new wonderful stuff”, i.e. whey, inulin, FOS, enteric coated probiotics, etc., etc.?” Duh? I agree with you about herxheimer reactions, which for others means die-off/healing/detoxifying symptoms and reactions that occur during natural healing. 37199

I too have read “Nutrition and Physical Degeneration”, and I believe that if Bee actually went and read this book again and compared the foods described in it with a list of failsafe foods, she would discover that most of the tribes Price describes ate a very low chemical diet, and if she did even the most basic research into historical diets she would have noticed this.

Some poor unsuspecting devil on her support group dares to recommend the failsafe diet for an individual who has had a skin rash on her cheeks (rosacea) for the last four years:

Jewel, please do not recommend Failsafe on my Group. I do not believe in maligning nature’s foods like that. You can isolate any substance in foods and claim they are causing problems, when a natural diet from Mother nature was what Dr. Price found kept primitives and isolated groups he studied very healthy. I’ve known people who followed Failsafe and they got sicker and they are missing the point. Most of those people had candida and when they follow my program they will get well even if they consume foods with amines and salicylates. Besides there is no such thing as allergies. 43117

Apart from the blatant fib that people who follow the failsafe ‘have got sicker’, we certainly aren’t missing ‘the point’. ‘The point’ is that we are sensitive to natural toxins found in foods. Medical studies and evidence-based science proving this fact matter little to Bee, who has a deeply religious attachment to her beliefs about candida. Bee then shows her really expert understanding of food chemical intolerance with the throwaway remark ‘Besides there is no such thing as allergies‘. Amazing!

This is her response to a poster who developed anaphylactic shock after taking Nurofen (ibuprofen), whose doctor suspected salicylate sensitivity. She has been on the failsafe diet for about a year:

The Failsafe diet claims that salicylates and amines in foods should be eliminated, which leads many people to eliminate good foods for no good reason. Any substances can be isolated from good natural foods and be found to make people react negatively to them, but whole foods are different. I don’t believe in maligning whole natural foods. 43490

This woman had an anaphylactic shock reaction to Nurofen, and this is what Bee Wilder says to her?

Written by alienrobotgirl

24 April, 2008 at 9:00 pm

Posted in Quacktitioners

Tagged with

The Biomed Extremists

with 10 comments

Kevin Leitch is the father of an autistic girl and the author of a blog that I respect. In recent months Leitch has been attacked by the biomed community for speaking out against the vaccination theory of autism, chelation, and vitamin megadosing. One prominent member of the mercury brigade responded by using the name and image of Leitch’s autistic daughter in emotive propaganda against him, at which point Leitch stopped blogging for a while, because much as he could cope with abuse directed at him, bringing his daughter into things was inappropriate. This is always a risk that internet debunkers have to take. When you start threatening people’s intensely held religious beliefs, it really upsets them.

In a blog post today, Leitch questions the behaviour of parents and DAN! doctors who experiment on autistic children. It is worth a read. I’ve seen stories like the ones that Leitch mentions over and over again on yahoo groups.

It’s very painful to visit those biomed forums and start reading the things that these parents are doing. When I read about the huge doses of vitamins and the chelation chemicals they are using, I get very angry. The parents even know that their children almost always respond negatively to these supplements, but they still give them because they are so desperate for their children to be ‘normal’. People seem think it’s okay, because these parents are trying to cure their ‘monstrous’, children of a ‘devastating disorder’ that will ‘ruin their lives’. I hate this attitude. If those children were neurotypical, their parents behaviour would be considered child abuse.

You see, I have been there as an adult with unofficially diagnosed asperger’s syndrome. I have willingly spent thousands of pounds experimenting on myself with supplements. I know what it feels like when you give an autistic child these supplements. People think that vitamins are harmless, but they are not. Especially not when you have a balance of neurotransmitters as sensitive and delicate as an autistic. During the last few months alone I’ve given myself a limp in my DVT leg with vitamin K, I’ve given myself serotonin syndrome with riboflavin, I’ve amined myself with folate and given myself a resurgence of eczema that took two months to clear, I’ve glutamated myself with B12, and I’ve given myself brain fog with B6. Sulphites – which cause the same reactions in autistic children as sulphur based chelators do – make me feel like death. You may as well bring back smacking, at least that’s a short-lived pain.

One might assert that most of these parents must be autistic themselves due to their complete failure to empathise with their children. Talk about pygmalion syndrome. Is it only ever neurotypicals who want autistic people to be normal? Or are some parents so afraid that they might be autistic themselves that they have to hate autism and find reasons that it isn’t genetic? Is this like the myth of the closet homosexual who is the most publicly homophobic person? I think thee protest too much?

An example of the paranoia and lack of medical knowledge in these groups is demonstrated in one of the messageboard quotes Leitch came across:

The past few days he’s had white chunks in his stool. Loser than normal stools, very light in color, almost like mustard with dark specs. DAN doc says yeast does NOT come out in poop … then what is it?

What is it with this dirty fascination with stool that the yeast/parasite/bacteria/SCD/GAPS people have? My dog does craps like this when he eats nothing but fat meat. Does that make him autistic?! Is he dumping yeast?! No! The white lumps people spot in poo are not ‘balls of candida’ or anything else alive. They are undigested fats that have saponified (turned to soap) due to the normal presence of hydrochloric acid in the stomach. The colour of poo is determined by how much chlorophyll and haem (heme) you consume, as well as whether you are breaking down your own haem into bilirubin. It’s no big deal. I’ve known people freak out and stop doing failsafe because their poo went yellow when they stopped eating so many greens and so much aged red meat.

Leitch links to an old post of his where he describes a mother who is chelating her autistic son. This post contains a video which people should watch. I don’t think many people actually know what an autistic child looks or sounds like. You will be struck by how normal this little boy is. He sits quietly for two hours and writes down bus timetables on a board to keep himself amused. Is that something that needs ‘curing’?

This post demonstrates such a great example of a typical mercury-mom approach. Check out the boy’s lab report at the bottom of the page. Virtually every heavy metal is in the low-normal range, except for aluminium and lead, both of which are only marginally over the normal range. This is clearly not a case of heavy metal poisoning, but people are so fixated on heavy metals being the cause of autism that they ignore the evidence before their very eyes.

Written by alienrobotgirl

15 February, 2008 at 8:57 pm

The problem with chelation therapy

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Something that often happens when people realise they are food chemical sensitive and/or especially if they are on the autism spectrum, is they automatically think the problem must be connected to mercury poisoning, or another heavy metal poisoning. But rule #1 any scientist should abide by, is that correlation does not denote causality.

People don’t like to think that autism is genetic: there is a moral panic in our society regarding the health of and how we raise our children, and a second moral panic in our society regarding industrial chemicals and toxins and the harm they can do to our health. The persistent assertion in our shared popular culture is that both of these things are getting worse in our society. These two moral panics neatly bisect on the subject of autism, and the natural conclusion of anyone introduced to the subject is that, somehow, heavy metal poisoning must be causing both autism and food chemical sensitivities, because neither of these health problems could be ‘natural’, could they?

The next reaction is to go through all of the alternative health theories of autism: that autism is caused by ‘gut dysbiosis’, by ‘parasites’, by ‘the wrong type of carbohydrate’, by ‘gluten and casein’, by ‘heavy metal poisoning’, by ‘vaccinations’, or by ‘vitamin deficiencies’. A number of these problems do correlate with autism – but that doesn’t necessarily make them the cause, rather they are a feature of the same underlying condition.

People with autism thought to be low on glutathione, sulphate, and methyl donors. Sometimes they are and sometimes they aren’t. This means that they don’t detox a variety of chemicals and heavy metals from their body as well as other people. When autistic people are found to have high levels of heavy metals in their bodies (and not all are and non-autistics can have high levels of metals too), it is usually because they are not detoxing them as well as other people, not necessarily because they have been exposed to an abnormal level of a poison – be that thimerosal, MMR, amalgam fillings or any other chemicals or metals in the environment.

Heavy metal toxicity has a range of medically recognisable symptoms. If you have heavy metal toxicity and you are experiencing these symptoms, it doesn’t necessarily mean they are also causing your autism, or your food chemical sensitivities, or your fibromyalgia. It is more likely that you are experiencing all of these things due to the same underlying pathway in the body being compromised. Unfortunately these symptoms heavily overlap the symptoms food chemical sensitivity, so it is possible to become very confused and convinced that you have a problem with heavy metals when in fact you do not, or that heavy metals have caused your salicylate issue, when in fact they have not, they just coexist.

Sometimes when people suspect that they are heavy metal poisoned, they will panic and have their amalgam fillings removed. This is a very dangerous thing to do. Unless you have your amalgam fillings removed by a specialist who uses a dental dam and piped oxygen, you are liable to actually give yourself acute mercury poisoning by having the fillings removed! Amalgams release much more mercury when they are disturbed than they do when they are sat in your mouth. If, three months later, you then have a metal toxicity hair test done, you are liable to confirm your worst fears!

Next, if someone finds they have an unusually high level of heavy metals in their body, the first thing they usually do is arrange chelation therapy. Sometimes people are so convinced that heavy metals are the cause of their problems that they will do this even if their heavy metal levels are in the normal range or only very slightly raised. Any very slightly raised level is seen as confirmation of a problem that in reality may or may not actually exist.

The problem with this is that the chelation chemicals in themselves are reactive and cause unpleasant side effects:

DMSO therapy: DMSO (dimethylsulfoxide), a sulphur based compound, and the liquid version of MSM. Any individual who reacts to sulphur will usually react to DMSO. It’s known side effects include nasal congestion, shortness of breath or troubled breathing (asthma), skin rash, erythema, itchiness, scaly skin, skin thickening, hives, swelling of the face, blistering, skin pain, nausea, diarrhea, headache, garlic-like taste in mouth, garlic-like breath, garlic-like body odor, transient hemolysis, dizziness, sedation, kidney injury, light sensitivity, color vision disturbance, corneal opacities in animals and birth defects in animals.

DMSA therapy: DMSA (dimercaptosuccinic acid), is also sulphur based, containing two carboxylic acid groups and two thiols. Any individual who reacts to sulphur will usually react to DMSA. It’s side effects include diarrhea, loose stools, loss of appetite, nausea and vomiting, skin rashes, chills, fever, immune system impairment in developing foetuses, and unpleasant odour of urine, sweat and faeces.

DMPS therapy: DMPS (dimercaptopropane sulfonate) is also sulphur based. Any individual who reacts to sulphur will usually react to DMPS. It’s side effects include ‘allergic’ reactions, agitation, burning sensation of mouth, throat and eyes, chest constriction or feeling of tightness in the chest, cardiovascular reactions – dizziness, weakness, lowering of blood pressure, heart palpitations or tachycardia, nausea, vomiting, and tingling of the extremities.

Reactions usually vary in character based on dosage. At a low dosage, you might experience histamine degranulation causing rashes, or asthma, and at a high dose
you might experience vomiting and diarrhoea. All of the sulphur-based substances need to be detoxified in themselves through the sulfite oxidase (SUOX) enzyme. People who have an upregulated cystathionine beta synthase (CBS) enzyme are already putting an extra load on this pathway. These are two of the enzymes that has been flagged up by Yasko and others as having an association with autism, and of course an intolerance and reactivity towards sulphur and sulphites.

EDTA therapy: EDTA (ethylenediamine tetraacetic acid) is a chemical compound containing two amine groups and four carboxylate groups. It ‘looks’ suspiciously reactive. EDTA in itself needs detoxifying from the body. It is known to cause ‘allergic’ reactions, and reported side effects of EDTA include low blood sugar, skin irritation, diminished calcium levels, cramps and tics, headache, nausea and upset stomach, dangerously low blood pressure, kidney failure, organ damage, irregular heartbeat, seizures, and even death.

EDTA is the only chelation therapy that Dr Amy Yasko approves of, because all sulphur based chelators are known to be so problematic to the chemically sensitive. However Yasko does not seem totally clear on the importance of avoiding food chemicals. The side effects of EDTA seem just as ‘reactive’ as sulphur-based chelators, and EDTA superficially resembles gallates and amines in structure.

Sometimes so-called alternative therapists will diagnose mercury poisoning purely based on a DMPS or other challenge test, consisting of injecting a quantity of the chemical into the blood stream and watching for reactions. If the patient reacts to the drug, they are diagnosed as having been mercury poisoned.

The problem with this as you can see is that chelation drugs have some very powerful side effects. They are in and of themselves reactive and tend to affect those with food chemical problems. However, the lay person and any badly educated therapist or quack will attribute these reactions to “mercury being freed up and circulating around the body.” The ‘mercury’ whether it exists or not is blamed for the reaction caused by the chelation drugs, and the hypothesis of heavy metal poisoning is reinforced.

What I find disturbing about this situation is that people can become trapped in a spider’s web of the mind: they blame heavy metals for autism or food chemical sensitivities, they undergo chelation therapy and react to the chelators, and then blame the reactions on the removal of mercury, when in fact they are side effects and are inevitable in those who have food chemical sensitivities. Every time they undergo chelation therapy, they keep reacting, which reinforces in their mind the need to continue with the chelation therapy to ‘cure’ their problems with food chemicals. This can continue ad infinitum for year upon year, long after the heavy metals are actually gone – if they were even there in the first place.

This is why it is extremely important to test and retest your urine, blood and hair levels of heavy metals regularly, and to think about using alternative methods of detoxification.

There are less painful ways to detoxify your body of heavy metals. Most people can detoxify normal amounts of heavy metals naturally – the food chemical sensitive and those with liver/kidney problems are more of an exception. When someone who is food chemical sensitive goes on the failsafe diet, it helps to restore their normal detox systems. They often find that a wide range of chemicals and metals start to come out of their body naturally when they stop eating them on a continual basis. This process may take several weeks or months. Genetically appropriate methylation/sulphation supplements will also help to restore detox systems, as will alpha lipoic acid and selenium, sweating more, getting enough sunlight, and using a far infrared sauna.

Written by alienrobotgirl

28 August, 2007 at 3:14 pm

Posted in Quacktitioners

Tagged with ,

Babies overfed to meet flawed ideal

with one comment

This is an article published several months ago in the New Scientist, my favourite magazine. I’ll start backwards, with the sidebar:

Sidebar: Eating for two

Crucial as diet may be during the first months of a baby’s life, the amount of food the mother eats during pregnancy may also count. New research suggests that this may predetermine whether the baby grows fat and even preset an infant’s appetite for life.

Emily Oken of Harvard Medical School in Boston, Massachusetts, and her colleagues studied 1044 mothers and their children. They found that women who overshot or simply met US Institute of Medicine guidelines on weight gain during pregnancy were four times as likely to have an overweight child by age three as those whose weight gain was “inadequate” (American Journal of Obstetrics & Gynecology, DOI: 10.1016/j.ajog.2006.11.027).

The results are supported by the findings of Lucilla Poston at King’s College London and her colleagues, who showed that mice that overeat during pregnancy give birth to heavier pups, which then continue to overeat throughout infancy. “They still suckle their mothers as usual and so get calorie overload, taking in too much glucose and fat,” says Poston, who also presented preliminary results in Budapest last week.

Poston’s work builds on previous studies showing mice that are malnourished during pregnancy also produce offspring that overeat, often ending up fatter than pups born to mothers with normal diets. “As soon as they’re born, they overfeed,” says Poston, who believes the pups are trying to catch up nutritionally, but end up overcompensating.

She believes that over or undernutrition in the mother may reprogram genes that control appetite in the fetus, priming the pup to eat more than usual and lay down more fat once it has been born.

Poston is now seeking support for a study in humans, to see if mothers who exercise moderately and eat a balanced diet produce leaner babies with normal appetites. In the meantime, she advises prospective mothers to try to reduce weight before they attempt to get pregnant.

“Breastfeeding mothers describe feeling heavy pressure to feed up babies they themselves think are perfectly healthy”

Many new mothers come to dread the arcane growth charts produced by baby clinics to assess whether their new arrival is being under or overfed.

Now research is beginning to confirm what many mothers have long suspected – that the most commonly used growth charts, based on babies fed high-protein formula milk, wrongly classify lean but healthy babies as underweight. What’s more, by encouraging mothers to overfeed their babies, the charts may be setting perfectly healthy children on the path to obesity.

The most popular growth chart, produced by the US National Center for Health Statistics (NCHS), has been used for nearly 30 years to provide a reference against which to judge the growth of a new baby. Introduced in 1977, when rampant obesity had yet to manifest itself, its main aim was to make sure babies didn’t suffer from malnutrition. What is now being increasingly recognised is that these charts were based on babies that were atypically heavy: almost all of them had been bottle-fed and came from white, middle-class families in Ohio.

The charts were revised by the US Centers for Disease Control and Prevention (CDC) in 2000 to include more breastfed infants, but this has little bearing on the preceding 23 years. “They have skewed infant nutrition towards overfeeding for decades,” says Bert Koletzko of the University of Munich in Germany, who heads a major European programme known as Earnest to investigate the effects of infant nutrition on obesity in adult life. “You could say we’ve had avoidable obesity as a result.”

Last week, Koletzko presented preliminary results from Earnest showing that babies fed high-protein formula milk put on weight far faster and more extensively than those fed breast or low-protein formula milk. Previous studies reached the same conclusion, but these relied on simply watching how a group of babies turned out, without being able to isolate the effect from other factors, such as wealth or the smoking habits of parents.

Koletzko’s study is the first to demonstrate a link after being able to dictate what the babies ate and control for these other factors. In all, 1000 infants in five European countries randomly received breast milk, low-protein formula milk or high-protein formula milk and were monitored until the age of 2.

At any given age, babies in the high-protein group weighed around twice as much above the norm as the highest-scoring babies in other groups. “Children in the high-protein group were significantly heavier,” says Koletzko, who presented the results at a conference on the impact of infant and maternal nutrition on childhood obesity in Budapest, Hungary, on 20 April. He is now following the babies to school age to see whether those who were heaviest during the first two years of life are at greater risk of obesity later on, as earlier studies have suggested.

As to why high-protein formula milk should make babies heavier, Koletzko believes that the extra amino acids could drive production of the hormones insulin and insulin-like growth factor 1 (IGF-1). Insulin encourages fat storage in infants, while IGF-1 promotes body growth generally. Koletzko found that levels of IGF-1 were higher in the high-protein group, as were levels of C-peptide, a metabolite of insulin.

A adviser to infant food manufacturers says that protein levels in baby milk have more than halved over the past 25 years, and that companies would be happy to supply brands with lower protein content if this was proven to cut obesity.

Though Koletzko’s results have yet to be published in full, there is growing acceptance that the NCHS charts are out of date. Last month, representatives from 31 European countries met in Brindisi, Italy, to discuss whether to adopt new charts. These are based on a study coordinated by the WHO of 8500 children in six diverse countries, all of whom were breastfed and reared in optimal circumstances, free from poverty, illness and malnutrition (see Graphs).

The concern that infants receiving formula may be overfed was a critical factor behind the WHO study, says Laurence Grummer-Strawn of the CDC, who is coordinating efforts to assess the new charts in the US. He declined to comment on Koletzko’s results, but says that “rapid growth in infancy has been shown to be associated with increased obesity”.

Other researchers in Budapest were keen to see the new charts brought in. “Everyone is pleased they’re being changed,” says Lucilla Poston of King’s College London, who has been studying how a mouse’s diet during pregnancy affects the prospects of its offspring becoming obese in adulthood (see “Eating for two”, below).

“The reaction I get from breastfeeding mothers when I explain the new chart is one of relief, because they describe feeling heavy pressure from health visitors using the old charts to feed up babies they themselves think are perfectly healthy,” says Peter Aggett of the University of Central Lancashire, a member of a UK panel which evaluated the charts. “It means we have a much better standard to operate to in the first, crucial two years of life.”

As for Koletzko, he believes his results constitute new and powerful grounds for accelerating replacement of the old NCHS charts. He points out that infancy is probably the only time in life when an individual’s entire diet can be carefully controlled. “Infants only get one form of nutrition,” he says. “You can’t do that in 10-year-olds.” New Scientist

What is the betting that the ‘extra amino acids’ are in fact hydrolysed or partially hydrolysed, and that they contain free glutamates? I’ve blogged about glutamates in baby formula before.

I have a friend who gave birth to a baby a few months ago. My friend has struggled with her weight for most of her life. When her baby was born, he was overweight. When babies are born overweight, they normally undergo a sharp correction in the few weeks after birth where they lose the extra weight they were born with and normalise.

Instead of letting this natural process occur, my friend’s health visitor told her that he needed to be fed on formula as well as breast milk in order to prevent him from losing any of his excess weight. My friend complained that her baby was sleepless and cried through the night. So would I if I was drinking what he was drinking!

Sadly, my friend didn’t feel she could go against her health visitor’s advice. Young mothers are usually so concerned to do the best for their babies that they are too afraid to listen to anyone who is not a medical authority. Who am I to her apart from a slightly odd, diet-obsessed layperson?

I just hope her health visitor’s dreadful advice isn’t setting up her baby for a lifetime of obesity.

Written by alienrobotgirl

23 August, 2007 at 1:19 pm

Posted in Quacktitioners

My health visitor told me to do it

with one comment

Following on from the Mrs Beeton post, I feel in a bit of a snarky mood about this subject and think it’s time for a nicely judgemental comedy rant. This one is along the lines of: if your health visitor told you to jump off a bridge with your baby in your arms, would you do it?

A “health visitor” is a strange breed of busybody nurse who is almost a social worker. When you have a baby one will come and interfere visit your house ‘in the community’ from the local ‘clinic’ to patronise teach you how to raise your baby according to government guidelines.

I now know or know of several young mothers – maybe half a dozen – and the number is expanding as we speak (another one is pregnant). Deciding to have children in your early thirties seems to be a bit of a social virus. Call it the curse of the middle classes. Once the golden “thirty” line has been crossed women go into instant panic-I-am-going-to-be-infertile-in-five-years mode and turn sex into a chore by marking their ovulation dates and taking their temperature. Once one woman has done it, it triggers a domino effect and one by one the rest get pregnant too. Unless you have a particularly stubborn partner like mine.

All of these young mothers thought motherhood was going to be wonderful and they were going to have angelic children because they felt they would make really good mothers. Unfortunately being a good mother isn’t just about loving children and raising them to behave, it’s also about diet, acknowledging that life isn’t perfect, and not expecting your child to behave like a household gadget or an employee, which I fear is the trend with the average middle class working mother these days.

All of the young mothers I know have crying, irritable, demanding babies and toddlers who won’t sleep at night and seem to have strange health/developmental problems like eyes or ears that don’t work properly. Most have farmed their kids out to dodgy babysitters or expensive nurseries after a few months of looking after them just to get away from them, which I find vaguely disgusting. I mean, why bother having one? Did you get bored with your Nintendo Wii that day? I don’t judge women’s right to work when she has young children, but if you don’t actually need to work then you should be making an effort. Those first couple of years are pretty darn important for brain development, and being plonked in the corner of a room with one teenaged nursery nurse and twenty other squealing brats doesn’t cut it as a pre-school education. The chav babysitter around the corner with five kids of her own who feeds your child squeezy cheese and red shoe string liquorice for lunch does not cut it either. Nor that most frequently used babysitter, the television, not even if it is showing ironically named “Baby Einstein” DVDs that give the infant brain less exercise than watching an episode of Scooby Doo. And Einstein was after all an autistic and didn’t talk until he was two.

All of these young mothers are alienated from their friends who don’t have babies, who ‘just don’t understand’. All of them nursed and supplemented with artificial baby milk due to health visitors telling them their babies weren’t fat enough (another kettle of fish, since the standard graph of “normal” baby weights are taken from bottle fed babies who are significantly heavier and more sumo-wrestler-like than breast-fed babies). All of them have done or intend to go on to wean with high-chemical fruit and vegetable baby food sold in pretty little glass jars (organic ones, of course). It’s sort of like dog food psychology. It’s called dog food, therefore it must be what dogs are supposed to eat. If it’s called organic dog food, it must be the sheer pinacle of what dogs are supposed to eat.

I can see where these young mothers are going. In a couple more years time I’ll see them in the supermarket negotiating in quietly stressed voices with their terrible toddlers that would you please put the tomato sauce back on the shelf and in a minute we can go outside and you can have some chocolate buttons. No dear, please get up off the floor because Daddy is waiting outside for us, how about some coca-cola instead? All right you can have the tomato sauce then but please stop crying or I will have to pick you up and tell you ‘there there’.

Then, much to my astonishment, one of them will announce that they are going to have another baby. What? Why? Wait!! But you didn’t fix the first one yet!! And the whole domino effect will come around again. Because you can’t just have one because then they won’t have a little sister or brother to get into fights with and beat up. That would be ‘selfish’.

I feel very sorry for them, but somewhat more sorry for the babies than the mothers. Every time I have made tentative suggestions about diet to these young mothers I have been sharply rebuffed. I avoid young mothers like the plague now, because it’s rather distressing for me to see them putting their babies through hell whilst being deaf to any advice that isn’t from a midwife or a health visitor.

Sometimes I picture a cartoon in my head: someone making a tentative but common sense suggestion, and an irate, flustered, young mother replying angrily: “that isn’t what my health visitor says I have to do!!!” in other words, mind your own beeswax. My health visitor is God and knows better than everyone else. In my case, it’s mind your beeswax you don’ t have a baby, or, mind your beeswax you’re that weirdo who is on the Atkins diet so I can’t trust a word you say. In other people’s case, I’m sure it’s mind your beeswax, you’re a man, or mind your beeswax, I don’t care if you’re my mother I still resent you for not bringing me up the way I would like to have been brought up because you smacked me once and I’ll raise my own kids exactly the way I think is best thank you…!

Some examples:

– You know, bananas and other fruit are known to cause diahorrea in babies.
That isn’t what my health visitor says I have to do!!! My health visitor says babies should be weaned onto ‘soft foods’ like fruit and vegetable purees!

– You know, if he is sleepless and crying a lot, it is possible that it is one of the artificial ingredients in the baby formula.
That isn’t what my health visitor says I have to do!!! My baby is overweight but my health visitor says I have to stop him from losing weight by giving him baby formula as well as breast milk!

In fact, overweight babies usually undergo a short downwards correction shortly after birth that is often misinterpreted by over-zealous nurses as ‘OMG losing weight!!!’ It’s nothing to worry about.

– Fruit juice is quite acidic and sugary so it’s not very good for the teeth and certainly won’t help her to get to sleep at night.
That isn’t what my health visitor says I have to do!!! My health visitor told me to stop feeding milk at bedtime and feed fruit juice instead because milk rots babies teeth!!!

Yes, seriously, and it was believed, possibly because the mother is prejudiced against animal foods, or prejudiced against me, or is totally hypnotised by authority, or just lacks common sense.

Question: How many young mothers does it take to change a baby’s diaper?
Answer: I don’t care! My health visitor told me I have to do it THIS WAY and I shouldn’t potty train until he has worked his way through every Pampers product on the market!!!

I was potty trained at six months by the way, which is perfectly normal, or was normal back in the seventies. And my mum used natural, washable nappies. I think it’s kind of disgusting seeing two year olds running around with nappies on. If a child is old enough to walk, it is certainly old enough to use a potty. Would you wait until a puppy was a year and a half old before house training it? Six months?? My health visitor told me my toddler wouldn’t have the necesssary cognitive skills until he was 18 months old! I don’t want to give him a bedwetting complex!!! LOL. Scuppered again. Cognitive skills? To pee in a potty? Perhaps my brain developed on time due to me still having fat, salt and sugar in my diet.

I’m beginning to see these health visitor types as some kind of strange big-brother invention designed to make sure mothers toe the government line on baby raising. I bet the health visitors report back to the social workers so any children who don’t get ‘five a day’ can be earmarked for adoption to keep the council coffers full.

My partner reads several doctor’s blogs. Doctors, apparently, hate midwives and health visitors. Their advice is always wrong. They always think they know best. And health visitors always think doctors are idiots. Ironic isn’t it?

Written by alienrobotgirl

9 August, 2007 at 2:20 pm

Posted in Quacktitioners