Chelation Update

[Guest]

Hi Everyone,

 

I received my CBC & Red Blood Cell Elements test results back for the last 3 months of chelation. I see my doctor towards the end of March and hope to have some results for the specs at that time. When I made my appt. I forgot to ask if he had gotten those analyzed.

 

Everything in my cbc was in the reference range. The liver levels were getting lower from the last cbc, but still in the range.

 

With the RBC Elements test the iron that I was low on before went back up so I'm glad I didn't start taking any extra iron. Selenium is still off the chart. Calcium is low, but still in the reference range. Everything else looks good including my zinc levels.

 

As far as the blood levels of metals from the RBC Elements test there was no cadminum or thallium which did have levels in the blood before. I'm still showing arsenic and lead levels in the blood. I haven't seen any levels of mercury in the blood. It will be interesting to see the next test results. I might take a kit home to do a challenge test eventually (haven't decided on that yet). I'll update again after my doctor's appt.

 

Carolyn

[kim]

Carolyn,

 

Glad to hear it sounds like it's going well.

 

Looks like you made good calls regarding the zinc, and now the iron. That's great.

 

Are you still adding new foods? I'm also wondering if your tests, as in the RBC,

ever showed a magnesium deficiency within the cell?

 

I was always puzzled as to why the boys blood work showed calcium and magnesium at the high end of normal, yet it appeared the mag taurate was really beneficial. Then I read where the body will work hard to keep blood calcium levels "up" even if it needs to pull from bone to do it. This made sense as people with osteoporosis don't necessairly show low blood calcium, as far as I know. That still left the question of magnesium, and I'm assuming that it's present, but needs the taurine (or another form) to be utilized by the cell.

 

There is a lively discussion going on, on the ASD solutions bd. regarding the Buttar/Cutler proticols. I'm learning a lot from that discussion, but just scratching the surface.

 

Also, the alternative Dr. I took the boys to, was surprised that I wasn't interested in a challenge test for metals for the boys. This is something I read from Andy Cutler, but it was from 2000.

 

http://www.tacanow.com/mercury.htm

 

Q: My alternative doctor wants to do a DMPS challenge test. Is this safe?

 

No. DMPS challenge tests and IV chelation with DMPS can be very dangerous—see www.dmpsbackfire.com A challenge test is when a doctor administers a large amount of chelator in a single dose, and then tests the urine for metals. Challenge tests in general aren't useful for diagnosing mercury toxicity because everyone has some mercury in them, and DMPS (or DMSA) will mobilize it. If DMPS is to be used, it should be administered orally, every 8 hours. And no one should take a chelator of any kind if they have dental amalgam fillings. Some doctors suggest doing the same sort of challenge test using a large oral dose of DMSA, or will suggest treatment with infrequent doses of chelator (once a day or every other day) This is also dangerous. Chelators should always be given in frequent, small doses (every 3-4 hours for DMSA, every 8 hours for DMPS).

 

I'm assuming this line of thought, is the reason that your taking more of the low and slow approach. So Buttar's protocol is larger dose, which some feel leaves less room for problems with redistribution, and others feel that Cultler's is the safer way to go, as it isn't as taxing, with less chance of pulling too many minerals? Do I have this right?

 

I know this is a complicated subject, and certainly don't expect you to explain in any detail, just wondering if I have the basics, or how much Andy's views may have changed in the last 6 years.

 

Thanks for any input!

 

Kim

 

I see posts about those mysterous specs quite a bit. Will be really interesting to see what the lab turned up.

[Guest]

Hi Kim,

 

Thanks. Yes, I'm still adding new foods. Since the celery I've tried Cream of Wheat, Rice milk, Watermellon, Cantaloupe, Dairy Free Graham Crackers, Peas, Buckwheat Pancakes, Dairy Free Butter, and Italian Salad Dressing. Handled everything well except the cream of wheat. It now makes 37 new foods since the start of MB12 shots & Chelation. No my RBC hasn't ever shown a magnesium deficiency. It was higher this time than 3 months ago.

 

For me choosing not to do the challenge test was a personal choice based on what I researched. I don't know that I really see any point of doing one except maybe if you want to be sure you've got all the heavy metals out. There's many other reasons for doing one, but I feel that seeing results is a fine monitor of if your pulling metals. I do feel the necessary tests such as CBC to check liver and kidney and the RBC elements or something that montiors mineral levels is by far more important than the challenge test if you can't do all tests. I'd much rather know that my liver, kidney, and mineral levels are okay rather than how much metals I'm pulling out of my body.

 

Yes, that line of thought is the reason I'm taking a more low and slow approach. Yes, Buttar's approach is larger doses and you chelate every other day. Andy believes that keeping the chelator in the body is important so you don't redistribute so much and then taking a break of atleast the amount of days you were chelating. I was doing TDDMPS every 8 hours and was getting rashes, but switched to every 4 hours and no longer am seeing the rashes. Every 4 hours isn't in Andy's protocol, but I don't know that everybody clears out the chelating agent at the same time either.

 

Yes, you have that all right. Andy's views haven't changed one bit in the last 6 years. I don't know that there really is one way that works for everyone. Dr. Neubrander uses both Andy's protocol and Buttar and that Andy's doesn't deplete minerals so fast. When I talked to the pharmacist where I get my TD DMPS from she even told me that she would not use the full amount recommended unless you've got a chronic health issue. She said that when she does the full amount she gets a headache so she doesn't use as much, but if she had a chronic health problem she would do the full amount. She also said we don't want to be mineral deficient because then you can't chelate heavy metals anyways. When I was researching which protocol to do I found a lot of one sided persons. I'm not one sided on this because its so unknown I don't know if there is one best way. I would ask people and they would either say Andy's protocol is the best and say how bad Buttar's protocol is or it would be the opposite and Buttar's is the best and Andy's is bad. So probably just researching and choosing the one you feel is best for your children. The other way I saw it was it would be a lot eaiser switching from Andy's which uses low amounts of chelators to Buttar's than switching the other way if it didn't work because Buttar's are higher and less frequent. Hope this helps.

 

Carolyn

[matt]

Carolyn,

 

Do you by any chance use a compounding pharmacy to get your supplements? We had a ION profile from Metametrix run on my daughter and she showed deficient in Zinc and Magnesium. This despite us supplementing these two, plus B6, in the way of 2 ZMA capsules before bed (20mg Zinc, 300 mg Magnesium, 10.5 mg B6). I went and bought magnesium and zinc separately and began giving her an additional 15 / 200 mg in the morning for a couple days and it appears to be having some positive effects. However, I'm concerned about keeping things in balance because I read that if you supplement magnesium you also need to add calcium, plus you should add taurine, etc. All this can get very confusing. The ION profile gave a individualized formula that you can take to a compounding pharmacy and get put together, which seems nice because you would hope they keep things in balance, plus could seriously reduce the number of pills my daughter needs to take. Anyway, I saw you also had a RBC done and was wondering what you were doing.

 

Her customized Vitamin and Mineral formula indicated adding additional amounts (to the base) of the following items: Vitamin D, Vitamin E, Pyridoxine (B6), Calcium, Magnesium and Zinc. Customized Amino Acids recommended adding the following: 5-Hydroxytryptophan, Isoleucine, Phenylalanine and Taurine. Finally, in the free-form (non compounding portion) they recommended supplementing Alpha-Ketogluarate, Coenzyme Q10 and Fish Oil.

 

BTW, her tests also indicated Aluminum, Arsenic and Cadmium towards the high end, but still within range. Is this something to work on, or does it have to actually be out of range to get nervous?

 

Thanks,

Matt

[Guest]

Hi Matt,

 

I do get 2 items from a compounding pharmacy. I get methyl-b12 shots and my chelation agent from a compounding pharmacy. However I do not get my regular supplements from a compounding pharmacy. I think it would be easier to have things compounded, but every time something changes (as in if I'm low in something) then the script would have to be changed. Also my insurance company decided they were going to no longer cover compounded prescriptions so its a much better deal just to buy them from a health food store.

 

Most of my supplements I take are from NowFoods vitamins. I tried some other over the counter from a compounding pharmacy, but it didn't fit me because it may some levels way too high. What I'm currently taking is Now Foods Full Spectrum Minerals and I add in extra NowFoods Zinc, NowFoods Vitamin E, NowFoods B-5, B-Complex, Flaxseed Oil, and probiotics. For now that seems to have been the correct adjustment for vitamins. Everyone is different though and the full spectrum minerals may be too much for your daughter because of her age or have something in it that she doesn't need, etc.

 

Yes, you do need to supplement calcium if your supplementing magnesium. For a lot taurine seems to help them. For myself taurine makes my tics worse and I don't know why. Be careful with Fish Oil as for some that makes tics worse and that's why I take flaxseed oil.

 

As for the Aluminium, Arsenic, and Cadmium I think getting vitamins correct first is important because if you choose chelation to get rid of the metals, chelation agents also pull good minerals. My toxic heavy metals are in the range and I'm chelating. This is what the Challenge test is for. You take a large amount of chelator and then do a urine or fecal test and see what toxic metals you pull. Most of the time heavy metals don't show up to be out of ranges in the blood or even the fecal or urine tests unless there's a challenge test. However I chose not to do a challenge test and just go by the results I'm seeing. I also think that when you chelate you have to make sure your ready for it. I went through some pretty tough months of chelation with a lack of energy, achy legs, and headaches. It looks like I'm starting to get into that phase again with the achy legs, headaches, etc. after a month of feeling really good. Let me know if you have any more questions.

 

Carolyn

[kim]

Carolyn/Matt,

 

Thanks so much for the response. Your courage and wisdom, never fail to amaze me Carolyn. I sure hope the achy legs and head aches, pass quickly for you.

 

Did you ever have base line tests? Or had you already supplemented magnesium when you had your first RBC?

 

Matt thanks for posting your daughters results too. A poster from another group was just talking about Met. ION profile and said her pediatrician had been on the phone with the lab, and was thinking of recommending this test for other kids in his practice that had eating issues, after she brought the results in, ordered from another Dr. Can I ask, if your daughter has limited diet tendencies? Obviously, it provides a ton of other info, but I'm especially interested in this area, as it's a much bigger problem than tics, for my youngest son.

 

I remember a post of Claire's where she talked about what Carolyn just said. She had a compounded vitamin made up, and was unable to keep using it, as a level changed. There are some places that sell flavored liquid supplements, of a lot of things. Might be worth checking into?

 

Just thought I would mention that I have read several times that zinc is best absorbed given alone, ususally rec. to give it at night. Zinc picolinate is said to be one of the the most absorbable forms.

 

I see from your first post in Dec. that 5HTP was suggested, and now it is recommended on this test. Did you ever start using it?

 

Also, vit D.... Bonnie's vits. don't contain vitamin D. With the new study that was done on it, I'm thinking of supplementing it, especially during the cloudy, winter months. Was interesting to see that recommended.

 

I sure hope others will post the results of tests they may be doing. I feel like these forums and sharing of info. are SO important.

 

Kim

[matt]

Kim & Carolyn,

 

Thanks so much for your posts. My daughter too has problems taking fish oil. At the time she took the ION profile we were supplementing with a small amount of flax seed oil and she showed OK for DHA but low for EPA. For some reason shes either not converting the one to the other or isn't getting enough. It would be nice if there was a way to supplement EPA directly without the fish oils.

 

The ION Profile was the first time I had something like this run and it was pricey but full of interesting information. My DAN doctor has ordered some more test based on the results. My daughter tested low for homocysteine which he felt might indicate some breakdown in the cycle involving glutathione. I'll post a follow-up on this if it turns out to be the case. My daughter isn't a particularly picky eater but I could see how this test would be helpful in this situation. It was very pricey so, unfortunately, the frequency of my repeating it will have to be somewhat limited. Not sure if I could cherry-pick and maybe just get the important parts re-run for less money.

 

A nutritionist we saw before did recommend the 5-HTP and we did give it to her for a while. It may have marginally helped (if that) but I stopped giving it to her recently when she complained of being tired and feeling "weird". I was giving it to her when she was tested.

 

I guess I'm going to check into how much it would cost to get a compounding pharmacist to mix the pills. I'd hope you could buy things a month or two at a time since, given the test price, I don't anticipate getting it repeated any more than every three months anyway. Finally, I think my daughter is allergic to some food dyes so I'm definitely trying to stay away from the flavored medicines. She actually takes (and prefers) the pills quite well.

 

Thanks both again and hope you get to feeling better Carolyn.

 

Matt

[kim]

Matt,

 

I had thought about the flavored supplements too when I typed that. At one time I had some info. on a place that sold supplements with natural flavors. Can't seem to find it now. If anyone needs it, I can look harder though.

 

I bumped up a thread with some of Claire's wonderful information. You can read through these too, as they are the threads that came up when I typed "compounding" in the search box. I think the one I bumped may be most helpful though.

http://www.latitudes.org/forums/index.php?...&hl=compounding

 

The expense of the tests, Drs. and supplements can be quite a load, can't they. I only hope I live to see the day that these disorders are recognised as something more than a mysterious genetic mishap, with no hope for improvement than a medication to mask symptoms. (That's my polite version. I'd probably be banned from the bd. if I stayed on that subject ) anyway, hope this helps!

 

Kim

 

oops, that link doesn't work. If you want to read more threads, just type compounding in the Enter Key word box-search topic, in the left hand bottom corner.

[Andy]

Carolyn,

 

Glad to hear it sounds like it's going well.

 

Looks like you made good calls regarding the zinc, and now the iron. That's great.

 

Are you still adding new foods? I'm also wondering if your tests, as in the RBC,

ever showed a magnesium deficiency within the cell?

 

I was always puzzled as to why the boys blood work showed calcium and magnesium at the high end of normal, yet it appeared the mag taurate was really beneficial. Then I read where the body will work hard to keep blood calcium levels "up" even if it needs to pull from bone to do it. This made sense as people with osteoporosis don't necessairly show low blood calcium, as far as I know. That still left the question of magnesium, and I'm assuming that it's present, but needs the taurine (or another form) to be utilized by the cell.

 

There is a lively discussion going on, on the ASD solutions bd. regarding the Buttar/Cutler proticols. I'm learning a lot from that discussion, but just scratching the surface.

 

Also, the alternative Dr. I took the boys to, was surprised that I wasn't interested in a challenge test for metals for the boys. This is something I read from Andy Cutler, but it was from 2000.

 

http://www.tacanow.com/mercury.htm

 

Q: My alternative doctor wants to do a DMPS challenge test. Is this safe?

 

No. DMPS challenge tests and IV chelation with DMPS can be very dangerous—see www.dmpsbackfire.com A challenge test is when a doctor administers a large amount of chelator in a single dose, and then tests the urine for metals. Challenge tests in general aren't useful for diagnosing mercury toxicity because everyone has some mercury in them, and DMPS (or DMSA) will mobilize it. If DMPS is to be used, it should be administered orally, every 8 hours. And no one should take a chelator of any kind if they have dental amalgam fillings. Some doctors suggest doing the same sort of challenge test using a large oral dose of DMSA, or will suggest treatment with infrequent doses of chelator (once a day or every other day) This is also dangerous. Chelators should always be given in frequent, small doses (every 3-4 hours for DMSA, every 8 hours for DMPS).

 

I'm assuming this line of thought, is the reason that your taking more of the low and slow approach. So Buttar's protocol is larger dose, which some feel leaves less room for problems with redistribution, and others feel that Cultler's is the safer way to go, as it isn't as taxing, with less chance of pulling too many minerals? Do I have this right?

 

I know this is a complicated subject, and certainly don't expect you to explain in any detail, just wondering if I have the basics, or how much Andy's views may have changed in the last 6 years.

 

Thanks for any input!

 

Kim

 

I see posts about those mysterous specs quite a bit. Will be really interesting to see what the lab turned up.

 

 

I would have to disagree with this. My son has had 10 treatments now with DMPS IV's with no problems.

The doctor that he uses has been doing DMPS for years now with no problems. Another DAN doctor, Dr. Berger in Tampa who has been written about in the Wall Street Journal does DMPS IV's as well. Recently in the news a man's life was saved using DMPS for removing pesticide poisoning. DMPS was attacked years ago by the same people who claimed that mercury did not cause ASD spectrum behaviors. I have lab results at home showing the percentages of mercury that was in my kids body and have seen the decreases from the urine challenge tests. DMPS was made by the Chinese and Russians and later perfected by the Germans to remove mercury from potential chemical warfare. Old example would be mustard gas. DMSA was invented by the US navy to remove lead but has been found to remove Mercury as well. ETDA is another treatment that is being used now to remove metals but again one needs a trained and experience doctor for any of these treatments. As for the time of treatments, it varies. Quick pulls vs Slow pulls is an individual choice based individual individual assessments. There is no one type of pull that fits all. I have had my kid detox with chelation for over a year now and have spoken to many parents who are doing the same. All have seen better success with the IV's vs the creams. The creams in our case are more of additional treatment then primary treatment. As for the pills if someone has stomach issues which delayed food allergie people have, yeast and fungus overgrowth people have, then the pills will make the tics worse for it actually feeds the yeast and fungus. Chelation with liquid and pills is only for individuals who have no gut issues. As for fillings, it is true that all silver fillings should be removed before any chelation begins. Supplements are taken before chelation treatments begins and should be taken during chelation. All supplements should be based upon testing. I do not know of anyone who has had any problems with having less minerals because of the chelation and all good DAN doctors give various blood cell/liver and other tests to ensure that the body is not being taxed from the chelation. My sons minerals, vitamins, amino acids, etc.. have all increased since he has been doing chelation for the chelation is pulling out the poisons that affected his body in producing or absorbing them in the first place.

[kim]

Andy,

 

You just summed up the other side of the lively debate Thanks!

 

Kim

[Guest]

Kim,

 

I've been taking magnesium for about 7 years (long before I ever had any vitamin tests). I didn't ever have any base line tests. I've had a vitamin test that I did go off supplements before having it done, but I had been supplementing with magnesium for several years already.

 

Yes, Andy just summed up the other side. I don't know which side is the best way to go. I think the important factor is that your removing the toxic metals. I would think the results would be the same as long as your removing the metals. With the transdermal dmps I'm using, I'm removing metals and it shows that in the blood so I feel its an effective way for me to chelate. Another factor is if you have a good DAN doctor that's not too far away, who is known as being experienced, then iv's might be worth a try. However in my area we have no DAN doctor's like that. The closest one would probably be 8 hours away and that's really just too much to go to once a month to get iv's. So transdermal dmps is the best thing I can do. From what I understand oral can cause stomach issues unlike transdermal. I should mention Andy Cutler does not favor Transdermal DMPS. He's always said its a fad and oral is better. However I still choose to use transdermal because of the yeast issues.

 

Carolyn

 

 

 

Matt,

 

I wanted to mention that my testing also suggested Alpha-Ketogluarate. I haven't tried it yet, but was thinking of trying some next time I order vitamins. I would check with a compounding pharmacy because maybe its real easy to change the vitamins every 3 months after testing. What I've wondered is if you get vitamins compounded do they compound it into just one supplement a day type of thing or is it still like Bonnie's Vitamins where you take 10-20 depending on your weight, etc. That might be the other thing to look into and make sure your daughter would be taking less vitamins.

 

Carolyn

[Andy]

Yes I did present the other side and I am a big believer in chelation. However, I must repeat what Carolyn has said in that be careful with the doctor you pick. To many doctors are now jumping on the bandwagon and some do not know the finer details of the procedures. I have as others have read about a certain doctor's office that used the wrong type of ETDA for chelation which caused the death of a child. ETDA is like blood. There is more then one type and to the lesser skilled and sloppy office mistakes in purchasing and then administation can be made. Just as there are the doctors who seem to cut off the wrong leg more then once in hospitals and there are the horrible doctors who claim to be plastic surgeons and cause horrible harm there are also doctors who a couple of years ago were pumping kids up with vacines with mercury who now claim to be DAN doctors. Chelation is an serious medical procedure that is safe when done correctly but can be deadly when procedures are not followed which includes preparation and constant testing.

[Sydsmom]

What about EDTA pills? We were thinking of having my daughter take those for a few months to start getting rid of the other metals then using DMPS lotion to take out the mercury. My husbands aunt who is very informed and involved in autism said her grandson is having success with the EDTA pills. But after reading Andy's reply, I'm nervous. It's all so overwhelming that I think that's why I sometimes don't do anything. My daughter has been on supplements for 10 months and her copper levels have come down to middle range. Her tics and behaviors aren't totally out of hand but we worried about what will happen when full blown teen hormones set in. (She's just turning 12) We don't use credit cards so everything we do is cash only and we want to heal my daughter but we want to see which method we can best afford. Thanks for any advice on this matter.

 

Lisa

[Andy]

What about EDTA pills? We were thinking of having my daughter take those for a few months to start getting rid of the other metals then using DMPS lotion to take out the mercury. My husbands aunt who is very informed and involved in autism said her grandson is having success with the EDTA pills. But after reading Andy's reply, I'm nervous. It's all so overwhelming that I think that's why I sometimes don't do anything. My daughter has been on supplements for 10 months and her copper levels have come down to middle range. Her tics and behaviors aren't totally out of hand but we worried about what will happen when full blown teen hormones set in. (She's just turning 12) We don't use credit cards so everything we do is cash only and we want to heal my daughter but we want to see which method we can best afford. Thanks for any advice on this matter.

 

Lisa

 

Lisa sorry if I caused you any second thoughts. Pills and IV's are two different stories as far as I know. With the IV the solution is going straight into the body so if the solution is wrong the body will go straight into shock. Also the IV is a big pull so if repeated IV's are done and if the body was weak and not prepared before hand and monitored during, damage can be done. The Pills are much safer as long as the person follows the given dosage and does not decide to self regulate while medicate. The only problems with chelation that I ever heard of was not with the chelation procedure, was with who was doing the procedure. Like any other thing with medicine. It is very importent to pick the right doctor and researching the doctor is the most importent thing a person can do.

I myself trust our DAN doctor with IV chelations on my son. But that was after researching the chelation agents, researching the procedures and with researching the doctor himself.

[Sydsmom]

Thanks so much Andy. I appreciate your wisdom and experience.

 

Thanks again,

 

Lisa