BioChat

[kim]

Caz,

 

Thank so much for that reply! I am going to read through all of your back posts hopefully sometime today, also, thank you Giselle. For the parents who are just starting testing, it really helps to hear your experiences.

 

I believe when we start vitamins, as you said Caz, it is easy for things to get out of sync such as zinc/copper. I'm hoping if the zinc for instance, is getting low and copper too high, that it is actually a good sign. From what I understand, as pathways are activated and glutathione levels raised, your body needs change and there may be a need for an increase in some supplements. So we can't get discouraged when a set back occures.

 

Both of my sons had high MPV (mean platelet volume) which I read could be a sign of B12 deficiency. This was the one I asked Ped about and he didn't know what MPV stood for. A poster here told me, and then I was able to find the B12 deficiency thing. Both sons had low neutrophils which I have in my notes "Lack of B12 or folic acid or autoimmune diease, Lupus or HIV. I'm not too concerned about the later two. Youngest also had high Lymphocytes 56.1 test range 32-52. These results were from blood profile ordered by regular Pediatrician, however I would have had no idea if I wouldn't have insisted that the results be faxed to me. Ped said he would fax it to me "if it would put my mind at ease" He said the results were normal, so apparently he didn't find these out of range results alarming, but they were very interesting to me. I didn't consider anything out of the test range normal. How could he give that opinion, when he didn't even know what MPV was?

 

Oldest son who had been/is on Bonnie's vitamins had high B6 also. I think it was 109-with the test range 5 to 50. I wonder if P5P may work better for him also.

 

Thanks again, and please keep us posted on the results of the B12 your using now.

You should see the list of question I have for Dr. on the 14th. There's no way we can get through all of these in one day, not to mention one hour, per child.

 

Happy 4th everyone.

 

Kim

 

Ps oldest sons A/G ratio was out of the normal range also. Listening to the biochat Doc's and the enzyme board, I keep hearing about liver support. Has anyone used milk thistle, or has anyone's Dr. recommended it? It's something I have been meaning to look at, and haven't had a chance.

[Caz]

Kim - I remember now you talking about your sons blood tests and that the pediatrician didn't seem to think anything of the results. Hopefully that is where integrated drs make the difference, they look at the big picture, rather than dismiss such results.

 

Have you run the complete blood test again, to see if the results are the same, or if they are more "in range" now. Sometime eleveated lymphocytes indicate an active viral infection, if that was the case, and it is now passed, they may be more within range, and you can stop being concerned. If not, then you know that there is an area that needs further attention. I get so annoyed when Doctors just dismiss stuff and us as parents for being paranoid. We know that there is something "amiss" somewhere in our kids bodies, or they wouldn't have the issues they do, but most normal doctors just want to bandaid the problems and tell us the stop worrying.

 

Can you tell me which dr will be on biochat on the 14th July. With the time difference I am listeing to the webcast at morning school drop off time, so its a bit tricky! Isn't it great thought!!!!!!!!!!!!!!!

 

I read some notes from Dr McCandless and she mentioned milk thistle for the liver. I have never had a liver enzyme test done for my son, but we did do the functional liver test, which showed low glycination ability. That the one where you talk tylenol and a few other things and they test your bodies ability to detoxify it.

 

Copper/zinc ratios are a big thing according to Pfieffer and Walsh. It shows that body has problems with its metalathionine. The dr I work with here in Perth thinks copper is a bigger problem than mercury and other heavy metals. He believes you have to get the copper out before the body can deal with the other metals. Not sure if that is entirely the case, but we worked on copper using zinc and molybdonum (not sure of spelling) vitamin c and antioxidants for the first year we did supps, and that was maybe the biggest thing in getting rid of the adhd symptoms.

 

Looking forward to getting recent hair analysis results and seeing if copper is more in balance now.

 

Caz

[kim]

Caz,

 

Here is the info. I have currently, on biochat Docs.

 

Thursday June 30, 9:30pm EST

Dr. James Neubrander

James Neubrander, M.D. graduated from Loma Linda University in 1975, trained as a pathologist at the University of South Florida, became board certified in Environmental Medicine, and received additional training in diagnosing and treating heavy metal disorders. He began working with children on the autistic spectrum in 1992. Since 1999 his practice consists almost exclusively of children on the autistic spectrum and children with other neurodevelopmental delays. He uses numerous biomedical approaches but specializes in the use of subcutaneous injectable methylcobalamin.

Wednesday July 6, 9:00pm EST

Professor James B. Adams

James B. Adams is a father of a young girl with autism, diagnosed in 1994, and that is what led him to eventually shift much of his research emphasis to autism, focusing on biological causes and treatments. He is currently a Full Professor in the Department of Chemical and Materials Engineering at Arizona State University. He created and teaches a course on Heavy Metal Toxicity, focused on lead and mercury toxicity.

 

Focus of his discussion will be mercury toxicity, chelation, and nutrients (vitamins, minerals, essential fatty acids, and amino acids)

Wednesday July 13, 9:30pm EST

Richard Deth, PhD

Dr. Richard Deth is a molecular neuropharmacologist and Professor of Pharmacology at Northeastern University in Boston. His research interests are directed toward elucidating the molecular events that cause neuropsychiatric disorders in which impaired attention is a prominent feature. His laboratory discovered a new signaling pathway involving the D4 subtype of dopamine receptor that is linked to the risk of ADHD, autism, schizophrenia and Alzheimer's disease

[kim]

*REMINDER*

 

 

 

BIO CHAT TONIGHT

Wednesday July 6, 9:00pm EST

 

 

James B. Adams is a father of a young girl with autism, diagnosed in

1994, and that is what led him to eventually shift much of his

research emphasis to autism, focusing on biological causes and

treatments. He is currently a Full Professor in the Department of

Chemical and Materials Engineering at Arizona State University. He

created and teaches a course on Heavy Metal Toxicity, focused on lead

and mercury toxicity.

 

 

Focus of his discussion will be mercury toxicity, chelation, and

nutrients (vitamins, minerals, essential fatty acids, and amino acids)

[Sydsmom]

Kim,

My daughter's liver levels are elevated according to blood test taken by her doctor. She is currently on Milk Thistle and she will be re-tested in Aug. My husband had had elevated liver levels last fall and took milk thistle (along with changing a prescription med) and when he was re-tested his levels were down. So, hopefully her levels will balance out with the milk thistle. Thanks for posting all this helpful info lately. Love it.

 

Lisa

[kim]

Lisa,

 

You are very welcome, and thanks for the reply about the milk thistle. I do plan to have testing again, to see if my son's A/G levels are better or worse, along with the other things that seem out of line on both sons and will be interested to see if new Dr. see's any significance.

 

I really wish we could find something common with our kids at this "basic blood work" level. I know how many people are out there that can't afford the vitamins, & supplements not to mention the consults and testing with the specialty Dr.s.

This blood work that I had done on my son's, may be the only testing some parents ever have access to, at this rate.

 

If someone could go to reg. Dr. and say that they had read where ticcy people can have high/low levels of this or that, maybe it would get someones attention if the blood work confirmed it. They may still have a lot of doubts, but maybe they would be doubtful a little more respectfully, and possibly more willing to listen to the parent's wishes about treatment decisions regarding their children's care, give referrals etc.

 

I will see what I can find on milk thisle, as I said, it seems I have read where many are using it. Will you please keep us posted on your daughters results with it?

 

Kim

[Sydsmom]

Yes, I'll keep you posted. Won't know anything until mid August. I agree about reg. doctors. Insurance would maybe cover it too. We decided against chelation at this point because it is too expensive. Her supplements alone are a few hundred dollars every 6 weeks. Yes it's worth it but if you don't have it, you don't have it. My aunt who is very involved in Autism and started the chelatingkids2 website said that the supplements she's taking will pull out the metals but at a slower pace. I was happy to hear that. Sydnie's doctor recommeded just recently zinc, selenium the milk thistle and additional B12 (she now gets a shot of it 2x week). She also takes some other supplements from Kirkmans. Her tics are still the same - have seemed to increase since school's out and it could be the chlorine from our pool and TV/playstaion. She won't stop swimming but my aunt said to dilute some epson salts and spray her when she gets out of the pool so we will be trying that. Our pool man said he puts in the minimum amount of chemicals needed. I"ll be trying the epson salts and let ya know.

 

Lisa

[kim]

Trying to find notes from biochat last night. Haven't been posted anywhere yet, that I have found. I'll keep looking.

[Andy]

Sydsmom

 

We have our son take a hour long epsolm bath everytime after the pool. The sulfer is suppose to help rid the body of the chorine that the skin had absorbed. I also read that sun bathing after swimming in the chorine pool only makes it worse.

 

By the way, I also read and post, not that often there thru, on the chelatingkids2 website as well. It is a good website, especially for those who are detoxing on DMPS lotion.

[Andy]

Sydsmom

 

 

We are currently chelating with DMPS IV and DMSA. We have seen more postive results with the DMSA in two plus months then years of supplements. The cost factor would be that the DMSA is alot cheaper in the long run since we are not plan on doing it for more then 6 months and the medication is only around 100 a month. Plus DMSA is covered by most insurances. What is expensive is the DAN doctor visits and phone conferences. However, six months to one year of using a DAN doctor may be alot cheaper then years of supplements. Now for an even cheaper cost factor for detoxing may be NDF. No doctor visit is needed, there are tons of websites for dosage level. Ask your aunt about it for some of the parents who post on her website praise NDF. The only draw back on it now as far as I know is the yeast factor. But if your child has no issues with that then look into it.

[Andy]

Kim, I wonder if you went to a regular doctor and said I think my child has lead poisioning if you could get all the blood work for heavy metals done. You might not even have to mention vaccination shots, just mention pollution or paint chips, etc.

[Sydsmom]

Andy,

Thanks for your comments and advice. I will ask about NDF. Also, thanks for the sunbathing tip - Sydnie is the typical girl who LOVES to lay in the sun after the pool. Thanks again!

[Andy]

Glad if I was of any help. It took us two summers to figure out and work out the pool thing ourselves.

[kim]

GOT EM!

 

Notes from Dr. Adams Biochat

 

www.eas.asu.edu/~autism

 

Q: What is your opinion of NDF+, Metal-free, etc? What about

contamenents? What do you think about FIR sauna?

 

A: We don't know with some of these products if they are

efficacious, whereas DMPS, TTFD, DMSA have a lot of studies. There

was a study done on chlorella, and that study found chlorella is not

effective in removing mercury. NDF is a form of chlorella. Jim

contacted MetalFree to ask what's in it, and they would not discuss

it, so he's leery. Jim has not seen studies on FIR saunas, so he'd

want to see research and make sure metals are coming out.

 

Q: Hi Dr. We have just begun sulfasalazine from Dr. K, for LMH in

colon. With the "heal the gut first" approach, how long would you

recommend before beginning chelation. My son regressed drastically

after double dose of flu shots, we believe he has high mercury (and

probably others) and are very anxious. Thanks.

 

A: Part of the gut problems are related to mercury toxicity, he

believes. First avoid junk food, lower sugar intake, use organics

where possible, avoid foods you're allergic to, try gf/cf or SCD

(although be careful because SCD can make kids worse sometimes). A

month ago there was a study on EFAs – after using EFAs for 9 months

they saw an 80% healing of gut issues. Takes a long time to heal

gut. DMSA can cause yeast overgrowth – most of the DAN! physicians

are not recommending ALA right now because of the gut issues.

Transdermal DMPS works a lot better to avoid gut overgrowth.

 

Q: Dr. Adams, Thank you for taking the time to speak this evening.

How do the DMPS drops work? We have begun chelating our teenaged PDD-

NOS daughter - transdermally every other day. Extremely high level

of aluminum (hair testing). Just trying to get an idea of how long

the drops are required. How are the metals excreted from the body?

Thank you.

 

A: DMPS (oral or IV) is very effective at removing heavy metals. The

absorption rate is twice that of DMSA (oral). With transdermal noone

has measured how much is absorbed in the skin. We don't know if

enough gets in to increase excretion. Most physicians that do

challenges don't see much excretion using TD-DMPS. Bottom line, we

need some studies. In a rat study, the DMPS initially raised levels

of mercury in the brain, but over time lead to a decrease of mercury

in the brain. Jim's opinion is to start with DMSA for one or two

months, then consider using DMPS later. (Some DAN! physicians

disagree with Jim's opinion.)

 

Q: On amino acids…do you recommend just a general amino acid or a

compounded a. acid from your child's a. acid test? I notice with my

son's test the acids jump up and down depending each time we re-run

the test so I am thinking with all the fluctuation maybe a general

one would do? Thanks.

 

A: Doing amino acid testing is useful. There is a 24 hour urine

sample, or a plasma sample. If you do plasma, it's better to do

fasting plasma. A customized amino acid supplement makes a lot of

sense. Compounding pharmacy will give you just what you want. Also

Kirkman has some good enzymes. If you're low in amino, it could be

because you need an enzyme to digest proteins better. If you suspect

gut dysbiosis, stay away from cysteine, try methionine precursor

instead.

 

Q: My child is NOT excreting mercury despite chelating for over a

year with various chelators (oral DMSA with ALA, TD-DMPS alone, and

lately IV DMPS / EDTA combined with a glutathione push). Does one

need to get lead out first before mercury will come out? Do you

know the safety of suppository EDTA as far as causing rectal

cancer? If he does not have heavy metals, then could the autism be

due to the Tetramune vaccine meaning a virus component versus a

heavy metal component?

 

A: Not every child with autism has a mercury problem. Dr Bradstreet

tested over 200 kids with autism. 9 doses DMSA. On average the

autistic kids produced 3 times as much mercury in their urine. In

baby teeth, the autistic kids had 3 times the mercury in their

teeth. If you don't see mercury coming out after a year, you might

not see it. Do you have a reasonable amount of glutathione?

Regarding the safety of EDTA, Jim has not read up enough on that.

DMPS tends to be safe, according to DAN!

 

Q: We started working with a DAN! June 2004 after many years (5) of

doing as much biomed stuff as we could on our own. Based on test

results we are chelating our 11 yr old son with TD Dmps since last

Dec. Before that we did a few months of oral DMSA. We are seeing

some metals coming out but are wondering if you can give us any idea

as to how long it may take to complete the process for him? We know

it takes a long time, especially for older kids, but we are seeing

a bunch of good stuff and just want it to happen faster! Also, what

do you think about Krill Oil? We have started this with our son and

we are seeing good results. Do you have an opinion as to what a

good dose would be each day? Thanks

 

A: If you see significant metals coming out for the first couple

months, it's probably having good benefit. Long term use of TD-DMPS

is beneficial, according to Dr Buttar. DMPS has some ability to

remove mercury from the brain, so long term use may have beneficial

effects, but the amount in the brain is so small compared to the

rest of the body might not be picked up in urine. At least a couple

months for oral DMPS or DMSA. Some people would say a year or

longer.

It's so important to normalize glutathione. If you chelate someone

without normal glutathione, it's like bailing a ship with holes in

it. The heavy metals will just leak back in. So normalize the

glutathione before starting chelation.

Dr Bradstreet thought krill oil looked very interesting. There have

been studies on EFAs, one was 40 kids with autism and 40 controls,

the autistic were low in omega 3's and high in certain type of omega

6's. After 9 months EFA supplements, he was able to normalize the

levels in these kids of omegas.

 

Q: Thank you for your time. My high functioning daughter has seen

great improvement through GF/CF/mostly SF + Feingold and

supplements. We have also treated her ulcers, clostridia and yeast

with medications. She was extremely aggressive before and also had

a lot of SIBs. All of that has been eliminated. Her current issues

are mild-moderate ADHD, mild OCD and ongoing need for Sensory

input. Are there general guidelines regarding when chelation should

be pursued and when the remaining symptoms are too mild to take any

risks? What about long term brain damage if the mercury does not

come out? What about ongoing gut problems if the mercury does not

come out? She is toxic with Mercury, Aluminum, Arsenic and Tin.

 

A: Hoping to start a study soon with long term (3 months) DMSA. The

only 2 studies are the Bradstreet study (single dose study), and one

other. So we don't know how much benefit there is. Age 5 and under

showed most improvement; age 6-12 showed some; kids over 12 didn't

show much improvement (that was on oral DMSA, Amy Holmes).

Baby hair studies did find there was a big difference in the baby

levels of mercury; but later on the hair tests didn't show the

mercury. Maternal dental fillings, maternal fish consumption, and

vaccines are the biggest contributors to mercury in babies.

 

Q: My 3.5 yr old son has been chelating with TD-DMPS for about 5 mos

with great results, and lots of elevated metal excretion in both

urine and fecal (with no challenge dose - just a very small dose of

about 10 drops). He just had his Asperger's diagnosis removed last

week. Anyway, we're considering adding TD-ALA, and I'm concerned

about re-distribution to the brain. We're considering using TD-ALA

only on the TD-DMPS days (every other day), every 2 hours or so. Do

you have any thoughts about whether we should do this?

 

A: There is very little data showing ALA is a chelator. One study

from Russia suggested maybe ALA increased excretion. Another study

on rats exposed to mercury using DMSA, DMPS, glutathione or ALA

found that ALA and glutathione had no effect on mercury in the brain

and kidney. DMSA got the kidney mercury, not the brain. DMPS got

both. Noone has done long term studies, so maybe ALA long term does,

but it's not known. ALA is a nutrient.

 

Q: I've heard lately about td-dmsa. Can you tell me anything abut

this route. Is it unknown like td-dmps? Thanks.

 

A: There is a pharmacy that sells this (Lee Silsby). But he doesn't

think anyone has measured the absorption rate, just like noone

measured the absorption of TD-DMPS. Disadvantage is that DMSA oral

might cause yeast overgrowth. DMPS oral causes slightly less yeast

issues. TD-DMSA – need to find out absorption rates. Other than

that, could try it. Jim's opinion is to use oral or IV DMSA or DMPS,

since we know a lot about them.

 

Q: My question is concerning ALA. We just added in ALA with this

last round of TD-DMSA. Is it possible to pull out enough Mercury to

change a child's coordination With just one round of ALA. My son

asked to take the training wheels off his bike and we expected to

just put them back on after a few tries. He jumped on his bike and

just pedaled off! We were floored! The week before he was weaving

all over the place with his training wheels on! Is this possible?

Or could it be because we switched to TD-DMSA instead of oral DMSA

and added TD-glutathione? Also my son is eight and we started

biomedical treatments last year? What do you think his chances are

of recovery?

 

A: Probably the amount of metals you're removing is just a small

part of the body burden, so it seems unlikely that just adding the

ALA could do this. For example, a professor received a lethal dose

of mercury, and days, weeks later, he died. When you pull mercury

out, slowly you restore enzymatic function. DMSA and DMPS are potent

anti-oxidants. It's possible the anti-oxidant effect caused the

reaction.

The younger you start the better, but even at an older age it's

important to start. I don't think it's ever too late. But you'll see

more benefit quicker when young. Also look at behavioral therapies,

ABA, RDI, etc.

 

Q: What are the advantages and disadvantages of using iv dmps over

transdermal dmps? Is there a certain type of chelation that is more

effective for adults? What tests are important to perform while

chelating.

 

A: IV – we know it works, it removes metals. High dose all at once

though, so there is some disadvantage in the way of shock to the

body. TD – more gradual dosing; and avoid the gut issues; and gets

to liver later which is good (disulphide form).

There is about a 1% chance of decreased liver function or elevation

of liver enzymes OR 1% chance of decreased white blood cell count.

Important tests before chelating: Check zinc levels, copper levels,

glutathione.

TTFD – published study by Lonsdale – using rectal suppository – nice

improvements in clinical behavior and ATEC scores! TTFD is

exceptionally safe. Not toxic at any dosage based on animal studies.

But….kids smell like skunks when taking it. The odor seems to go

away as time goes on and the child becomes less autistic. TTFD is

not FDA approved in US though, so it's hard to get a study done in

the US.

 

Q: how can we tell what, if any, heavy metals or toxins my child my

have? And is the oral chelation a conservative and effective way to

go? We started the GFCF and SCD when my daughter was 4 years old.

She is high functioning and 6 years old now. She still is not

socially appropriate many times and we are not sure how much she is

absorbing in school, though she is in a public school with a shadow

and seems to be doing well.

 

A: Best way to test, oral DMSA challenge, collect urine up to 6-10

hours after taking DMSA. Compare to baseline urine from same time of

day when you're not giving DMSA. Tells you if high amount comes out,

that it's in the body. Also tells you the chelator is working. Other

tests, you can test baby hair and/or baby teeth.

Jim Adams thinks very highly of RDI, that could help with the

social. Check vitamins and minerals, most kids with autism are low

in both. If you have gut issues, you're not going to feel very

social.

 

Q: What is the best way to raise glutathione levels when chelating?

lipoceutical glutathione or NAC? Is there a danger in giving NAC

while chelating to a child who has low plasma cysteine?

 

A: Not a lot of research. Some papers say oral forms of glutathione

don't help, others say it does. Probably only 15% of oral

glutathione gets into body. Jill James study shows TMG and folinic

acid partially raises glutathione; then add MB-12, that will

normalize glutathione. NAC we don't have data on. Lipoceutical

glutathione we don't have data on.

Many kids with autism have low cysteine, NAC might help with that.

Oral NAC could cause gut problems though. MSM could normalize

glutathione too.

 

Q: What is the best form of glutathione for the children to take? I

know that there are some formulations that are in powder form and I

know of others in capsule form. Is there a difference between

glutathione and l-glutathione? Thank you again.

 

A: Doesn't matter if powder or capsule. Kirkman has a lotion. Jim

will be testing that in a DMSA study soon.

Be cautious about the liquid and lotion form. Some companies don't

have proper Ph. You want the reduced form of glutathione that

Kirkman has.

 

Q: What are your thoughts on dosage frequency for oral DMSA? I went

through several rounds of every four hours 3 days on and 11 days off

before I switched to TD-DMPS. I saw greater gains with the DMSA and

am thinking of going back to it, but I'm puzzled by the different

dosage frequency information out there. Thank you!

 

A: Half life of DMSA is about a day or so. Dosing every 8 hours is

fine, although some folks think every 4 hours is good. Because the

half life is long, it will take several doses to get up to what you

need for your body. If you go too many days in a row, you start

having adverse affects. The 4 or 11 days off gives you a week or 2

week cycle (3 days on).

 

Q: how do you normalize glutathione and how do you know it's

normal? Is mB12 injection helping with this?

 

A: The Jill James study shows for a small number of kids, TMG and

folinic acid partially normalizes glutathione levels; and adding in

MB-12 fully normalizes it. High dose vit C (500 mg) boosted typical

college students' glutathione by 50%. Oral and IV glutathione can

help. N-acetyl cysteine in mist or IV might help. Jill James showed

these kids oxidize more glutathione, so they can use extra anti-

oxidants to combat oxidative stress.

 

Q: Thanks! How often would you dose someone using DMPS and ALA?

Also, how much $$ would you need to raise for the TD DMPS pig study?

 

A: Oral 3 days on 11 days off. Rectal DMPS (Andrew Levinson uses

this method) same 3 on 11 off. IV probably every couple weeks, or

once a month. TD form Buttar uses every 48 hours. For ALA, wouldn't

want to use oral form. TD-ALA you could use it every day.

$$ Depends on how simple or complex. To measure a few pigs' urine,

simple study, a few thousand dollars.

 

Q: Does the Pyroglutamic Acid result in the Organic Acid test show a

person's glutathione level? Thanks again!!

 

A: That's a test I'm not very familiar with, ask Dr Shaw.

Vitamin Diagnostics does good tests, Jim thinks very highly of them.

 

 

 

 

If you need to reach Jim, go to his website, and email him, his

email address is there.

[Caz]

Thanks Kim

 

I popped in the listen for a while to biochat, but then the kids went crazy (school hols and it being am here not pm), so I had to log out. I appreciate all the info you have put up on this and other issues.

 

Chelation seems to be fraught with issues. I had wondered about adding td-dmps to what we are doing, but it is another large cost, and for now, things seem to be going along ok.

 

That being said, my kid has come down with the flu, and tics have increased dramatically, but we know this happens each time he is sick. I am giving extra zinc and vitamin c to help.

 

 

Thanks for the tips with the pool chlorine. I was not aware that espom salts helped with the chlorine, as I was also not aware of sunbathing being an issue with chlorine. Thanks guys

 

Caz