Jump to content


Photo

Mercury and chelation advice


  • Please log in to reply
25 replies to this topic

#1 KarenT

KarenT

    Kilimanjaro

  • Members
  • PipPipPipPipPipPipPip
  • 1553 posts
  • Location:Gateshead

Posted 06 June 2006 - 09:52 AM

I've just been re-reading (yet again!) the poll on chelation from last year.

J's saw his cranial osteopath at the weekend who suggested I have him tested for mercury/heavy metal overload and recommended a certain lab in London beginning with a B (sorry, not sure if I'm allowed to name it). He's made enquiries and they can offer two means of testing:

1. a comparitive urine sample taken before and after administering DMSA
2. a single early morning urine sample taken without DMSA.

Treatment (if appropriate) would involve supplements of zinc and selenium, not sure yet of the daily dosage. Apparently there's a difference between chelation therapy and chelation treatment - anyone know what it is?

Having read the poll thread I'd be very interested to hear from other people (Jaded?) who have used a similar method. I'm aware that there's a certain amount of controversy surrounding DMSA and chelation generally, and don't want to make any hasty decisions. Does anyone know what DMSA contains? It seems to be 'safer' than EDTA which seems to be an industrial pipe cleaner by another name - wouldn't touch that with a cattle prod.

Supervision seems to be an issue too. Not sure if the osteo is sufficiently qualified to oversee this, and we're not under any consultant at the moment (although waiting for appointment with local ASD specialist July/August).

In the meantime, can anyone point me to a web link for Andy Cutler's protocol?

Thanks all.

Karen
x

#2 call me jaded

call me jaded

    Offline dealing with real life

  • Moderators
  • PipPipPipPipPipPipPip
  • 2453 posts
  • Gender:Female
  • Location:West London

Posted 06 June 2006 - 06:47 PM

Moira Merriweather has summarised a whole load of Andy Cutler posts:

http://home.earthlin...ANDY_INDEX.html

Just for anybody who doesn't know about chelation, it is really important to NOT attempt it if you or your child has any dental amalgams (silver fillings). These need to be removed first. Can't emphasise this enough.

I'm a long time lurker on AutismMercury yahoo group. The first time I looked at it it scared me witless and I didn't go back for about 6 months. Then I read it - the volume of posts is huge - for about 2 years whilst I waited for dear son's body to heal itself once we'd done the GFCF diet and saw a vast improvement in health. But it didn't happen.

The only chelation therapy I have ever considered doing is Andy Cutler's protocol. AC has never had a product to sell apart from his book (others want you to buy their very special products) and has given many hours of free advice to the yahoo group (see moira's summary), he's not an autism specialist, but a dental surgeon who realised he was suffering from mercury poisoning and devised a safe protocol using over-the-counter products. The amount of DMSA used each time is a fraction of the capsule. I have only ever had to buy one lot. Kirkmans do the very low doses that you don't have to split up.

I did think of doing the urine test, but it was only testing for one thing and did not seem value for money when other tests are more comprehensive (I don't easily part with the readies, LOL). The DDI hair test is the best way to see what's going on. There is a post somewhere that explains why - I'll have a look for it later. I'm also keen to use DDI as (like Sunderland Uni) they are building up quite a database which helps with research. It's not expensive to do. Moira's website tells you how to do it without a co-operative doctor.

The greatest thing which held me back from doing this was the lack of medical support to do it in the UK. This is now available. I can PM the name of the doctor and private hospital. The initial testing they recommend is expensive. I have not had it done (I'd started before I heard about them), but did take the precaution of 'running by' my GP what it was I was doing. He was not able to offer an opinion within the terms of his contract with the NHS, but at least he didn't tell me not to do it.

The osteo WON'T be qualified to do more than facilitate the testing IMHO and why pay for a supervision fee when you can do it yourself? (Told you I was tight.) I would imagine the difference between chelation therapy and chelation treatment is a legal one. I would go straight back to them and ask them what, and get whatever protocol they are proposing in written format. I do completely understand your reluctance to proceed without medical support. It was a question I really struggled with. In the end I came to the conclusion it was going to be about 10 years before the 'gold standard' research would be available and frankly I didn't want to wait that long. I found enough in PubMed to convince me it was worth doing.

So far so good. My son's special school (who have no idea what we're doing) report 'amazing' progress. This is difficult to put in context because they have only known him from September 05, but they do say he is the most settled of his Y7 cohorts, shows great understanding and is very clever at getting out of what he does not want to do. Oh, and he's so busy socialising in the corridor they've had to get the staff to modify their response to his social overtures as it's making him late for class. I have no idea if it's the chelation or his change of school which is helping him.

Anyway, I'm happy to answer what questions I can, but I'm not an expert, just a mum.

#3 LizK

LizK

    Mt Blanc

  • Members
  • PipPipPipPipPipPip
  • 787 posts

Posted 07 June 2006 - 10:02 AM

I've never read much about this area, not really sure what I think but can I ask a question? My son has never had vaccines containing mercury. That being so does that mean that he is unlikely to have potential probelms with mercury overload?

Lx

#4 KarenT

KarenT

    Kilimanjaro

  • Members
  • PipPipPipPipPipPipPip
  • 1553 posts
  • Location:Gateshead

Posted 07 June 2006 - 10:39 AM

Thanks for all that Jaded. Such a lot of reading to do! Like yourself, I'll probably give the diet a chance to work its magic (or not!) before proceeding with this, but will plod my way through Autism Mercury in the meantime to get myself informed. There seem to be so many contradictions, I can't keep my head straight just now.

The osteopath is making enquiries about the actual process advocated by the lab and will get me pape copies to peruse at my leisure. I'm in no hurry to start this, need to be much better informed before then.

Thanks for your help. You may be hearing from me again in the near future!

Karen
x

#5 Martian Martian

Martian Martian

    Salisbury Hill

  • Members
  • PipPip
  • 16 posts
  • Location:Glasgow

Posted 07 June 2006 - 10:55 AM

Hi Karen,

I'm afraid I'm another skeptic about the whole 'mercury/heavy metal toxicity causes autism' argument.

In my view, Cutler selling a book about his protocol is just as dubious as quacks selling snakeoil - he's peddling a product to desperate people.
Also, the rather tasteless publicity stunt (read about it here) where they claim they can cure Professor Stephen Hawking just leaves a bad taste in the mouth.
Notice on the website they are adamant that Hawking's condition is caused by mercury poisoning. There is no ambiguity in their language (echoes of Generation Rescue).
Not 'might be' or 'could be a possible factor'; they are adamant.

And then have a look at this website. Doesn't say anywhere that Hawking's condition is caused by mercury.

Good luck - proceed with caution! smile.gif

#6 call me jaded

call me jaded

    Offline dealing with real life

  • Moderators
  • PipPipPipPipPipPipPip
  • 2453 posts
  • Gender:Female
  • Location:West London

Posted 07 June 2006 - 11:57 AM

As I said earlier I always use PubMed to ferret out published research. Quite often you can get the full published research off google too. Here's where you can find my favourite search engine:

http://www.ncbi.nlm.nih.gov/

Out of curiosity I did a search on ALS and mercury and found a free full text article summarising research:
http://www.pubmedcen...z&artid=1280411

QUOTE
Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease or Lou Gehrig?s disease, is a rare neuromuscular disease with an incidence rate of about 1 in 100,000. It is characterized by muscular weakness from the degeneration of motor neurons, and like PD, intellect and personality is often unaffected. The National Institute of Neurological Disorders and Stroke reports that only 5?10% of all ALS cases can be traced to genetics, particularly to a mutation related to the superoxide dismutase 1 enzyme. This leaves the vast majority of cases without a known etiology, with the potential for environmental association briefly outlined below.

Far fewer studies have examined the association of pesticides and ALS than for both AD and PD. McGuire et al. (1997) found that agricultural chemicals have a significant association with the development in ALS, with a stronger association for men than for women.

Metals may play a role in the development of ALS. Some studies have observed an association with occupation in welding or soldering (Armon et al. 1991; Gunnarsson et al. 1992), but not all have found metals to be related to ALS (Gresham et al. 1986; McGuire et al. 1997). More specifically, an association has been observed with exposure to lead (Armon et al. 1991; Chancellor et al. 1993; Felmus et al. 1976; Kamel et al. 2002), but no association was observed between ALS and lead levels in various tissues (Kapaki et al. 1989; Stober et al. 1983) or toenails (Bergomi et al. 2002); however, these studies had limited numbers of study participants. No association was observed between exposure to zinc and ALS (Vinceti et al. 2002), and the evidence from biomarker studies is inconclusive, with an increased (Gellein et al. 2003), decreased (Yasui et al. 1993), and no association observed for levels in brain tissue (Kapaki et al. 1997; Nagata et al. 1985) or toenails (Bergomi et al. 2002) compared with controls. However, these studies may have had limited power based on the size of the study population. Although one epidemiologic study showed no association between exposure to copper and ALS (Vinceti et al. 2002), there was decreased copper concentration observed in both cerebrospinal fluid and blood (Kapaki et al. 1997), and no association in toenails (Bergomi et al. 2002) among patients with ALS versus controls. Mercury was associated with ALS risk (Felmus et al. 1976) but was found in lower concentrations in the blood of ALS patients versus controls (Moriwaka et al. 1993).

Case?control studies examining biomarkers of iron, manganese, selenium, and Al and risk of ALS were found. Increased iron levels have been observed in brain tissue (Kasarskis et al. 1995; Yasui et al. 1993), although not in blood (Nagata et al. 1985) or toenails (Bergomi et al. 2002). An increase of manganese was observed in cervical cords (Miyata et al. 1983), both an increase (Kapaki et al. 1997) and decrease (Nagata et al. 1985) in blood levels, and no difference in toenail concentration (Bergomi et al. 2002) among cases versus controls. Selenium was found to be increased (Nagata et al. 1985) and decreased (Moriwaka et al. 1993) in blood cells, but no association was observed in toenails (Bergomi et al. 2002) of patients with ALS versus controls. An increase was observed in Al in central nervous system tissue (Yasui et al. 1991a, 1991b) and cerebrospinal fluid (Sood et al. 1990), yet others observed no association in spinal cords (Kasarskis et al. 1995) or toenails (Bergomi et al. 2002). However, the latter two studies had small numbers of study participants, possibly limiting the power to detect an association.

A few studies found a relationship between other exposures and ALS. Gunnarsson et al. (1992) found a nonsignificant association with solvents, but the association was stronger and statistically significant for males with family history of neurodegenerative disease or thyroid disease. Others found conflicting results (Chancellor et al. 1993; McGuire et al. 1997). One study found that those with a history of occupation in the manufacturing of plastics have a significant association with the development of ALS (Deapen and Henderson et al. 1986). Occupations in electrical work have been implicated in the development of ALS in a few studies (Deapen and Henderson 1986; Gunnarsson et al. 1992).


So I think they're on a bit of a long shot. Sounds like one of those ideas one has after a few beers and has forgotten about by the morning.

BTW the Cutler protocol would chelate other heavy metals.

#7 call me jaded

call me jaded

    Offline dealing with real life

  • Moderators
  • PipPipPipPipPipPipPip
  • 2453 posts
  • Gender:Female
  • Location:West London

Posted 07 June 2006 - 12:12 PM

QUOTE (LizK @ Jun 7 2006, 11:02 AM) <{POST_SNAPBACK}>
I've never read much about this area, not really sure what I think but can I ask a question? My son has never had vaccines containing mercury. That being so does that mean that he is unlikely to have potential problems with mercury overload?

Lx



Not necessarily.

I consumed large quantities of tuna during my pregnancy which may have been a contributor. The warnings about mercury in tuna came out after my son was born. There are other links - mother having Rhogam jabs for a rh+ baby when she is rh-, plus environmental factors - coal fired power stations, crematoriums, chlorine plants, etc.

There is a study which compared SEN rates with environmental exposure to mercury which made some interesting correlations:

http://www.seedcoali...udy_UTHSCSA.pdf

#8 Lila-Zen

Lila-Zen

    Salisbury Hill

  • Members
  • PipPip
  • 15 posts

Posted 08 June 2006 - 11:28 AM

Chelation Watch and Autism Watch are worth a read too.

Think as parents we need to understand all sides of the arguements as you've suggested Karen smile.gif

#9 KarenT

KarenT

    Kilimanjaro

  • Members
  • PipPipPipPipPipPipPip
  • 1553 posts
  • Location:Gateshead

Posted 08 June 2006 - 01:06 PM

QUOTE (Lila-Zen @ Jun 8 2006, 11:28 AM) <{POST_SNAPBACK}>
Chelation Watch and Autism Watch are worth a read too.

Think as parents we need to understand all sides of the arguements as you've suggested Karen smile.gif

Thanks for those links, LZ. Have added them to my reading list!! Maybe get round to them by Christmas!

Karen
x

#10 LizK

LizK

    Mt Blanc

  • Members
  • PipPipPipPipPipPip
  • 787 posts

Posted 05 March 2007 - 01:51 PM

Not thinking of doing this but know someone who is which piqued my interest in this again. Understand the basic principle about chelation but after googling am really none the wiser as to how it is done. Different websites recommend different things from eating pulses, transdermal creams, clay baths, EDTA, DMSA and so on. Some oral treatments, some via injections of one sort of another. Is there a set protocol or is it as random as it appear? Where do the Vit B12 injections fit into this theory? Are they given to help with chelation or something else? Can anyone explain it simply LOL! Finally hair testing seems to be one method of testing for heavy metals? Is the amount of mercury in the hair representative of the amount of mercury int he body? Could it not be the autistic children have normal amounts but excrete more via the hair?

Thanks

Lx

#11 florrie

florrie

    Ben Nevis

  • Members
  • PipPipPipPipPip
  • 315 posts

Posted 25 February 2009 - 11:39 AM

I just seen this thread and can answer some questions although it is probably a bit old now.

B 12 does not help with chelation but many neurological problems as well as many other conditions are helped with B 12, I've had improvment with high dose perque B12 hydroxocobalamin which you can't get in this country. The B12 in t his country didn't help at all something to do with abosorption, I get a special one that helps for people with malabsorption.

Hair mineral tests won't confirm mercury, most people that have mercury related problems actually have difficulties excreting or detoxing therefore it is not in the hair. You need to do a Kelmer test which shows if you have a problem with mercury. It is available from www.drsarahmyhill.com

I haven't tried chelation yet

Edited by florrie, 25 February 2009 - 11:40 AM.


#12 mossgrove

mossgrove

    Mt McKinley

  • Moderators
  • PipPipPipPipPipPipPipPip
  • 3275 posts
  • Gender:Male
  • Location:Wirral

Posted 26 February 2009 - 01:20 PM

I would be very wary of chelation.

Bluntly there is no peer-reviewed eveidence that it works and there are concerns about it's safety inclusing a British child that died in America a couple of years ago. I would not put my child at risk in that way.

Simon

#13 mossgrove

mossgrove

    Mt McKinley

  • Moderators
  • PipPipPipPipPipPipPipPip
  • 3275 posts
  • Gender:Male
  • Location:Wirral

Posted 26 February 2009 - 01:27 PM


In December a paper was publushed entitled :

Pediatric fatality secondary to EDTA chelation by Arla J. Baxter a; Edward P. Krenzelok in the journal of Clinical Toxicology:

The summary is as follows:

QUOTE
Chelation therapy has emerged as a popular treatment modality to remove heavy metals that are thought to cause autism. We report a fatality that occurred as a consequence of chelation therapy for autism when the incorrect form of EDTA was administered. Case Report. A five-year-old autistic male was being chelated in a physician's office. While receiving his third treatment he went into cardiac arrest. It was not determined until after the child's death that he had been given edetate disodium rather than edetate calcium disodium, causing profound hypocalcemia and triggering the cardiac events that led to his death. Discussion. In 1991, the CDC recommended using only edetate calcium disodium, not edetate disodium, to children because edetate disodium may induce tetany and possible hypocalcemia as illustrated in this case. Conclusion. The use of chelation therapy in autistic children has not been validated and can have tragic consequences



Simon

Edited by mossgrove, 26 February 2009 - 01:28 PM.


#14 SandraB

SandraB

    Salisbury Hill

  • Members
  • PipPip
  • 12 posts

Posted 03 April 2009 - 03:53 PM

QUOTE (mossgrove @ Feb 26 2009, 02:27 PM) <{POST_SNAPBACK}>
In December a paper was publushed entitled :

Pediatric fatality secondary to EDTA chelation by Arla J. Baxter a; Edward P. Krenzelok in the journal of Clinical Toxicology:

The summary is as follows:




Simon


Hi. LizK, I think you will find if you search a study which found that autistic children didn't have more mercury in their hair than normal. Some people believe this is because autistic children have a special difficulty in getting rid of mercury. However there is also an analysis of milk teeth from autistic children which found higher levels in the tooth than normal.
There is also a study which found that the closer you got to US power plants (coal fired power plants are the major source of mercury in the US) the higher the rates of autism. So possibly one part of the cause of some cases of autism could be a low level exposure to mercury in the womb (forget the injections theory for now).
There's a Feb 6 2004 Washington Post article which quotes a biochemist saying researchers recently have shown that mercury levels in umbilical cord blood are 70 per cent higher than those in the mother's blood. This could fit my child's case, I have v high levels of mercury fillings, but mercury is found in all kinds of places in the modern world.
The research published today on cortisol and autism could fit in to this mercury theory - autistic children have lower levels than normal - if you search a bit you will find, for example, that fish from mercury contaminated pools have lower levels than normal.
So how would we persuade the body to release mercury without resorting to the dangers of chelation? Or fight back against its harmful effects? I don't know, but if you read right through the paper on Vitamin D and autism on the Vitamin D council website you will find Dr Connell's hypothesis that checking Vit D levels then giving supplements or sunbathing safely till Vit D is up to a good level may help. (and he is not trying to sell a personal treatment clinic.)
It could be that a combination of chronic low level mercury poisoning in the womb combined with a lack of Vit D, which may be v important for the immune system, is behind some cases of ASD. I could be talking total b******* but he is a v well qualified proper doctor and I think it is worth trying, not least because unlike chelation it is cheap and doesn't involve long expensive consultations. Have a look, see what you think. Sorry to bore on about Vit D (I don't have any financial interest in it!) but any line of hope that doesn't harm is surely worth investigating.
Florrie, your info was v interesting, thank you.



#15 call me jaded

call me jaded

    Offline dealing with real life

  • Moderators
  • PipPipPipPipPipPipPip
  • 2453 posts
  • Gender:Female
  • Location:West London

Posted 04 April 2009 - 07:27 PM

I have read around this widely and the Andy Cutler protocol is worth looking at. The one thing to know is to never start doing anything if the person has amalgam dental fillings.

#16 trekster

trekster

    Mt McKinley

  • Moderators
  • PipPipPipPipPipPipPipPip
  • 3600 posts
  • Gender:Not Telling
  • Location:nr Bristol
  • Interests:stamp collecting, cross stitching, playmobil, star trek, liverpool fc, computers

Posted 04 August 2009 - 12:16 AM

QUOTE (mossgrove @ Feb 26 2009, 02:20 PM) <{POST_SNAPBACK}>
I would be very wary of chelation.

Bluntly there is no peer-reviewed eveidence that it works and there are concerns about it's safety inclusing a British child that died in America a couple of years ago. I would not put my child at risk in that way.

Simon


That report is grossly exaggerated, he only died as he was being treated with the wrong type of chelation. EDTA is very dangerous and andrew cutler recommends against using EDTA. IV chelation is out also under the Andrew Cutler protocol. If anyones interested in the type of chelation i have been doing for over a year, PM me and i can send you the link to the yahoo group.

Andy cutlers basic recommendations are;

1, remove all metal fillings from your mouth and replace with white ones
2, remove all tinned food and shellfish from the diet (contain high mercury levels)
3, resolve to never put mercury fillings (the free ones unfortunately crying.gif) into your mouth again
4, a minimum of 4 days later you can start chelation.

It is recommended to start with small doses, now i use 25mg DMSA every 4 hours for literally 3 days and 2 nights. This is called a round. At 1st i could only manage 12.5mg DMSA (had to split the capsules). But after the side effects of the rounds eased i went up to 25mg DMSA. The same dose has to apply throughout the round.

That means at night as well. DMSA grabs the metals from the body and allows you to excrete them. It is very good for chelating lead which as removed will get replaced by calcium and other bone minerals that should be there!

The idea is that after 4 months you can do ALA rounds, 12.5mg is all i can manage and ive been doing this almost a year. ALA has to be taken 3 hourly, except at night where you can increase to 4 hourly again for 3 days and 2 nights.

If you can get it prescribed by a DAN! doctor then you can have DMPS suppositories which need to be taken every 8 hours. i wish i could have tried these at 1st as it can get difficult to get up at night to take my dose.

i keep my medicine by my bed ready poured out, i just need to feel for a tablet, swallow it then change the alarm time on my phone.

Chelation can be safe if done using a recommended protocol like andy cutler. i have been on his frequent dosage chelation list for over a year now and people who've been damaged by alternative protocols often come on this list. i had one setback at the beginning due to not recognising i had a filling in my mouth at the time. i have to pay nearly 100 for every required filling but i feel the long term gains from these costs are worth it.

i wish it was illegal to use anything but white fillings in teeth! crying.gif

Alexis


#17 trekster

trekster

    Mt McKinley

  • Moderators
  • PipPipPipPipPipPipPipPip
  • 3600 posts
  • Gender:Not Telling
  • Location:nr Bristol
  • Interests:stamp collecting, cross stitching, playmobil, star trek, liverpool fc, computers

Posted 04 August 2009 - 12:17 AM

QUOTE (call me jaded @ Apr 4 2009, 08:27 PM) <{POST_SNAPBACK}>
I have read around this widely and the Andy Cutler protocol is worth looking at. The one thing to know is to never start doing anything if the person has amalgam dental fillings.


Agreed his protocol has meant i can do without my colorimeter specs and im less at risk of becoming crippled with ME/CFS again!


#18 trekster

trekster

    Mt McKinley

  • Moderators
  • PipPipPipPipPipPipPipPip
  • 3600 posts
  • Gender:Not Telling
  • Location:nr Bristol
  • Interests:stamp collecting, cross stitching, playmobil, star trek, liverpool fc, computers

Posted 09 October 2009 - 12:46 AM

QUOTE (mossgrove @ Feb 26 2009, 02:20 PM) <{POST_SNAPBACK}>
I would be very wary of chelation.

Bluntly there is no peer-reviewed eveidence that it works and there are concerns about it's safety inclusing a British child that died in America a couple of years ago. I would not put my child at risk in that way.

Simon


i have been chelating for nearly 2 years now. There are some forms of chelation that are unsafe such as IVs and others that are much safer such as AC protocol. PM me for details of this list as its on email not BB.

DMSA, ALA or DMPS are known as safer methods of chelation.

Alexis

#19 chidalgo

chidalgo

    Norfolk Broads

  • Members
  • Pip
  • 1 posts

Posted 30 May 2011 - 07:59 AM

Hello, my 3 1/2 year old son has just been diagnosed ASD and we are looking at trying Biomedical Treatment and Chelation. Our nearest practioner is Breakspear Medical center in Hemel Hempstead, we we told our GP he tried to discouraged us as he doesnt believed in these treatments and had some patients coming back to him with bad side effects from this Clinic. Has anyone been to this clinic or can someone recommend me a good practioner around London where my son can have these treatments safely. Thank you.

#20 bid

bid

    K2

  • Members
  • PipPipPipPipPipPipPipPipPip
  • 7649 posts

Posted 30 May 2011 - 10:14 AM

Welcome to the forum Chidalgo,

Can I ask what you are hoping to achieve by using Biomedical Treatment and Chelation?

If you are hoping to help your son realise his full potential, I would say that there are more effective, non-invasive methods.

If you are hoping for a 'cure', then I think you will be disappointed.

Your son is very, very little and his diagnosis very recent. What kind of support do you have? Have you heard of Earlybird? What does your Special Needs Health Visitor suggest? If you live in Hertfordshire, have you heard of CHIPS, which is a support group and playscheme for families.

I haven't had any personal experience of BT and Chelation, but then I have to be honest and say that I have only heard negative things about them. It's not something I would have used for my son.

I hope you can find some positive steps forward for you all.

Bid :)

Edited by bid, 30 May 2011 - 11:43 AM.


#21 baddad

baddad

    Everest

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 10462 posts
  • Gender:Male

Posted 30 May 2011 - 11:16 AM

Hi -
I would agree with the post above. The following, from the BMJ is quite an old article (2006), but still completely relevant:

More children are being diagnosed as having autism, and there are currently no treatments based on aetiology.1 Consequently, a number of controversial, unproved, alternative treatments have arisen. The recent death of an autistic child after a medication error with intravenous chelation therapy has brought one purported aetiology based treatment to international attention.2 The 5 year old child reportedly died from hypocalcaemia after receiving edetate disodium instead of edetate calcium disodium.3Approved uses for chelation therapy include heavy metal poisoning in adults and children, although it has been used in an off-label manner for conditions such as coronary artery disease and Alzheimer's disease.4 Practitioners are using a variety of chelation agents and routes of administration for children with autism spectrum disorders, with oral dimercaprosuccinic acid, also known as succimer, probably the most common. Several of the agents are not approved for use or are given through an unlicensed route of administration such as rectal or transdermal.5Available information about current use of chelation therapy in autism is scant, and what exists implies that inappropriate agents, routes, or dosage schedules of administration are being used as autism treatments. In addition, there is no compelling evidence to suggest that chelation therapy is an effective treatment for autism. A review of Medline (1966 to April 2006) and Premedline did not yield any relevant reviews or randomised controlled trials of chelation therapy for autism spectrum disorder.Serious concern should arise about the ongoing use of chelation therapy in children with autism at this time, especially when the side effects of appropriate administration are well reported, a death has occurred with an error of administration, and the treatment incurs a cost for the families. The potential for vulnerable families to seek this as a promised miracle cure raises ethical and professional practice questions that need international consideration.


I posted this some time ago, which is well worth consideration when researching any therapy, but especially one as controversial and potentially dangerous as chelation:

http://www.asd-forum...tive-therapies/

I'm sure also somewhere on the forum is a list of 'alternative treatments' as reviewed by the BMC / NAS, but I couldn't find it with a quick look... basically, however, chelation treatment was listed as 'potentially harmful' and totally ineffective, whereas most 'treatments' were just listed as ineffective/inconclusive.

As bid has said, if you've just received your child's dx your natural instinct is to try anything you can to help him. Unfortunately, because autism presents and develops in such a wide variety of ways there is a huge industry surrounding it offering 'alternative treatments' and therapies, intensive teaching methods etc that are claimed to help or even cure it. They are all completely and utterly unproven, and for every single child whom it is claimed to have been helped by any one of those treatments there is another child with autism who has acheived the same level(s) of functioning without any specific intervention whatsoever. In essence, with any of these cures or therapies, any progress made by the child is attributed to the 'treatment'. Any negatives are written off as coincidental, evidence of a 'co-morbid' condition effecting the treatment or evidence of poor administration of the treatment by the parents/carers. If none of those satisy, the standard fall-back position is that it 'doesn't work for every child and no one knows why'. What that means in real terms is that any gain is down to the treatment (and of course once the treatment is being administered it's impossible to know how the child would have developed without it!) and where it doesn't work the parents and/or child are to blame.

I posted a very successful intervention of my own some time ago called 'eating chips therapy' which makes this process (hopefully) a little clearer:

http://www.asd-forum...post__p__305067

Having posted all those 'negatives' about invasive/unproven 'wooo' therapies I would add that there is a huge amount you can do to help your child to achieve his full potential, and the forum is full of heaps of good advice to help you help him. I really wish you the very best in achieving that.

L&P

BD

#22 newbie101

newbie101

    Salisbury Hill

  • Members
  • PipPip
  • 21 posts

Posted 22 October 2012 - 09:46 PM

Hello,

I posted about using chlorella awhile back and got a few replies. The chlorella I am using is a mercury detox agent and I am hoping that it will remove mercury from my body and in doing do lessen my asberger traits.

There is the website listed below

http://www.mandimart...upport-41-c.asp

That sells detox agents and detox supplements. If someone uses this website could they please let me know the most appropriate mercury detox agent to use?

Thanks

#23 sesley

sesley

    Mt Blanc

  • Members
  • PipPipPipPipPipPip
  • 782 posts
  • Location:Scotland

Posted 23 October 2012 - 11:47 AM

are you sure you want to waste your money on this rubbish? There is someone /someones in America getting rich by selling this
stuff to vunerable people like you,thinking you can be cured,your asd is you.you have ,you from birth to death.what you need to start doing,is to accept you
for who you are .if you have any health issues go see your GP.

#24 sesley

sesley

    Mt Blanc

  • Members
  • PipPipPipPipPipPip
  • 782 posts
  • Location:Scotland

Posted 23 October 2012 - 04:40 PM

what i find disturbing is the American attitude seems to be coming this side of the Atlantic giving people the idea that drugs can cure autism.Some drugs thearpy recommended by Gp,s and proper Uk based professionals may be of some help,but they do not cure autism.At the most i use food supplements like iq fish oil and movical powders becausemine suffers constipation episodes,which is a result from his limited diet.I do avoid aspertarmine and i use soya milk rather than dairy milk and he seems ok ,but thats all.the rest of treament,is the usual nuturing for a child with extra support and loads of patience from me and a drive to encourage him to feel good about himself.Vunerable people are getting sucked into the snake oil thearpy making some witch doctor very rich.

Edited by sesley, 23 October 2012 - 04:41 PM.


#25 trekster

trekster

    Mt McKinley

  • Moderators
  • PipPipPipPipPipPipPipPip
  • 3600 posts
  • Gender:Not Telling
  • Location:nr Bristol
  • Interests:stamp collecting, cross stitching, playmobil, star trek, liverpool fc, computers

Posted 25 October 2012 - 01:30 AM

You are likely to be quite surprised to discover that some ASDers do chelation on themselves. i know a few such individuals that are either engaging in chelation or seriously considering giving it a go. Whatever you do never do the IVs as these are deadly and more dangerous than the frequent dosage capsule method. In fact Andrew Cutler warns against chelation IVs in his literature.

i have been gf/cf/msgf/aspartamef and pineapple free for about 7 years. The pineapple free helps with my dislocating joints. i did have a spell where i thought i would be fine on dairy so went back on it about a few years ago. i wish i hadn't. Currently i am in another withdrawal phase because ive just realised tea bags have gluten in them. Many sensible practitioners would advise being gluten, dairy, soy and other allergens/addictions free before considering biomed or chelation. Some autistiics and their parents would stop at diet (lifestyle as you cant 'cheat' on this and get away with it like real diets) and supplements.

I respectfully disagree with the negativism about chelation and biomed. i got my filling replaced a few years ago and started chelation using the best protocol Andrew Cutler. i then bought his books 'Amalgam illness' (which is currently missing) and 'hair test interpretation' book. i got a hair test done which showed what state my mineral transport was within my body.

Biomed has really helped me. i have been taking supplements that really help such as taurine, 5htp, d3, omega 3 oils and yes i have been chelating but using the protocol which is a frequent dosage one. Within a round of chelating at low dose dmsa (start 3 days after amalgam is removed and ask your dentist instead of parents re your fillings status) my constant migraines had gone completely. Within a few months (google Andrew Cutler to find out more regarding doses) i was able to do without my colorimeter glasses. Considering Scotopic Sensitivity Syndrome is a permanent disability and years before i was unable to do without them for even a day without having ME symptoms i find the link to be highly likely. I was even assessed as 'not having scotopic sensitivity syndrome anymore back in 2008' the end of the same year in which headaches werent happening when expected. ie from light changes. Also was a few months after i started chelating.

My ME hasn't returned in over 8 years whereas before i used to be ill whenever i misplaced my colorimeter specs. i still have fibromyagla but the crippling fatigue only returns when i have to take my gabapentin for the severe pain i am in (something i wouldn't be able to express and wasn't recognised without changing my lifestyle so that it excluded demorphic items). For a short time my sleeping pattern was quite reasonable then an EDS/HMS flare happened.

Also my supplements and chelating agents are the cheapest i can find, i am going it alone without a practioner. All i need are the yahoo groups about gfcf recipies (strangely occassionally covers chelation) and chelation, the literature by Andrew Cutler and (when my brain decides to sleep better because ive added in or taken out what is causing it to be so wired) my weekends (for the treatment). i spend on average £10 a week on supplements and sometimes less than that, ive found some supplements during a clear out so am likely to buy less for now. i go out about 3 times a week at the most so supplements money comes out of my going out fund but im fine with that. Also i know that the changes ive experienced are due to the chelation and better lifestyle (food wise at least) because ME and scotopic sensitivity syndrome are considered permanent disabilities that are incurable.

#26 trekster

trekster

    Mt McKinley

  • Moderators
  • PipPipPipPipPipPipPipPip
  • 3600 posts
  • Gender:Not Telling
  • Location:nr Bristol
  • Interests:stamp collecting, cross stitching, playmobil, star trek, liverpool fc, computers

Posted 21 November 2012 - 11:20 PM

Selsey actually this is a parent who set up Mandimart in order to help other parents to help their kids. She sells the products much cheaper than the USA the main reason why the website was set up in the 1st place.

Chelation really helped to improve my scotopic sensitivity syndrome to the extent that it was taken off as a diagnosis for me. Also my ME/CFS is now fibromyalgia with much less severe fatigue. Modern medicine is unable to help me, ive tried over and over again to find the right meds or therapies to help me but there is no funding and very little chance of getting funding for my issues.

DMSA or DMPS or ALA are the right chelators to use. Some folk also use citrate. Also on there is a book on their called Amalgam Illness which will provide you with the basics you need. There are other chelation threads on this section of the forums as well.




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users