Re: TTFD - liver

[Guest guest]

It is gentle, slow, steady, and closer to how most of us detox naturally.

TTFD - liver

Lynne and Dr JM,

I am totally a fan of TTFD and it's been great for us. I'm curious, though,

why TTFD wouldn't potentially stress the liver. I would have thought that

anytime toxins exit through urine that the liver and kidneys have a big job to

do. What are your thoughts?

Thanks,

Abbie

[Guest guest]

I would like to interject. We are one of the few who had SEVERAL problems

with the TTFD. Our son still has not gotten over the effects of using it for

only a few days. Please be careful. Just because someone says its OK, dont

take their word as gospel. All of our kids are different and TTFD is relatively

new in the treatment arena. When we had problems, no one could help us or

answer our questions and still cant. The Mayo Clinic saw him last month and

told

us definately NOT to use it.

Kim

[Guest guest]

He went berzerk. He was just about indistinguishable from other children,

but since we gave it to him, he started stimming out of control, lost what

little eye contact he had, response to name, etc. He is still not back to his

" normal " self and we stopped using it about a month ago.

I emailed Dr. McCandless several times regarding this, but she had no answer

for me as to why it occurred. We used authia cream, which she recommended and

gave it correctly in the doses we were told. The only thing different was

that he got it on his hands once and touched some coins, which turned his hands

black. Dont know if this had anything to do with it or not, neither does Dr.

McCandless.? We are at a loss and no one could answer our questions. It was

very hard on us and we felt extremely alone and foolish for trying something

and experimenting on our child without a professional helping us.

Again, I dont want to stop anyone from trying to help their children, just

telling you what happened to us....my two cents.

[Guest guest]

Dr. Mc.

You have all my info. I emailed you several times regarding my son when this

was going on. You basically said you couldnt help us because you didnt know.

You can check my emails to you from mid December on if you like.

kimbamac@...

Kim

[Guest guest]

Dr. McCandless:

P.S: You are right in assuming the Mayo Clinic does not approve of many of

the biomedical treatments many of us use. They themselves do not chelate even

some of the most heavy metal poisoned patients (that are proven to have metal

poisoning) because it is so ineffective, in their opinion.

It was a very interesting week that we spent there and we found many problems

that our DAN Dr. did not detect nor our neurologist. They actually found an

etiology for our sons PDD behaviors, when no one else could...and believe me,

weve done it all..

Kim

[Guest guest]

Kim: I'm sorry your child had a bad reaction to the TTFD. Would you mind

telling me the source of the TTFD you used? Also, I would be curious to know

what you feel are still the effects. And has your child had any bad effects

from any other detoxifying agent?

You are right, thiamine as used in a transdermal form is new, but thiamine as

allithiamine orally has been used for many years and Dr. Lonsdale has never seen

any toxicity with it. He has been researching this compound for 20 years, and

has written quite a few research papers on it. Yet, we are all so biochemically

unique that anyone can have a bad reaction to anything, even if it is just a

vitamin. It certainly is puzzling in your case, as many of us now have had

(collectively in the thousands) experience using it with very little problem

except some rashes from the medium and occasionally some hyperactivity at first,

which usually abates with a decrease in the amount. Occasionally some parents

have reported some soft stools which TTFD might have contributed to.

I do wonder if the Mayo Clinic would approve of many of the things we are

doing? Dr. JM

Re: TTFD - liver

I would like to interject. We are one of the few who had SEVERAL problems

with the TTFD. Our son still has not gotten over the effects of using it for

only a few days. Please be careful. Just because someone says its OK, dont

take their word as gospel. All of our kids are different and TTFD is

relatively

new in the treatment arena. When we had problems, no one could help us or

answer our questions and still cant. The Mayo Clinic saw him last month and

told

us definately NOT to use it.

Kim

------------------------------------------------------------------------------

[Guest guest]

I remember now, and neither I nor Dr. Lonsdale (the creator of TTFD) had any

understanding of your son's reaction, and still don't. The only thing I can

think of may be that he was so metal-toxic that moving it around might have

caused a stronger than usual reaction. Did you have hair testing or RBC testing

showing high metal poisoning? And did the Mayo clinic check his liver status

when you went there, or note any other blood or urine abnormalities?

There's always the possibility of an allergic reaction to one of the (many)

ingredients in the cream, also.

I would certainly appreciate it if anyone else's child has had such a drastic

reaction to Authia to let us know. The more information we have, the better, as

this is new territory. Dr. JM

Re: TTFD - liver

Dr. Mc.

You have all my info. I emailed you several times regarding my son when this

was going on. You basically said you couldnt help us because you didnt know.

You can check my emails to you from mid December on if you like.

kimbamac@...

Kim

[Guest guest]

Would you mind sharing what they found, either on the list or privately? As a

teacher, I need to know as much as possible, and am more than willing to get

information from wherever I can. Dr. JM

Re: TTFD - liver

Dr. McCandless:

P.S: You are right in assuming the Mayo Clinic does not approve of many of

the biomedical treatments many of us use. They themselves do not chelate even

some of the most heavy metal poisoned patients (that are proven to have metal

poisoning) because it is so ineffective, in their opinion.

It was a very interesting week that we spent there and we found many problems

that our DAN Dr. did not detect nor our neurologist. They actually found an

etiology for our sons PDD behaviors, when no one else could...and believe me,

weve done it all..

Kim

------------------------------------------------------------------------------

[Guest guest]

Kim,

Could you tell us more specifics of what happenned and what the Mayo Clinic

thought it did in the case of his particular chemistry?

This is a good reminder that NOTHING, no matter how great, works for every one.

(every body, literally)

Thanks.

Abbie

Re: TTFD - liver

I would like to interject. We are one of the few who had SEVERAL problems

with the TTFD. Our son still has not gotten over the effects of using it for

only a few days. Please be careful. Just because someone says its OK, dont

take their word as gospel. All of our kids are different and TTFD is

relatively

new in the treatment arena. When we had problems, no one could help us or

answer our questions and still cant. The Mayo Clinic saw him last month and

told

us definately NOT to use it.

Kim

------------------------------------------------------------------------------

[Guest guest]

Kim, in the context that I know nothing, but nothing....this business of his

hands going blackish when he touched coins seems significant - as if he pulled

metals into his body. I'm not about to experiment on our son, but intellectually

I wonder what subset of our children would respond that way to contact between

TTFD and metal. Curious, and so hard for you. We're sad for you.

Re: TTFD - liver

He went berzerk. He was just about indistinguishable from other children,

but since we gave it to him, he started stimming out of control, lost what

little eye contact he had, response to name, etc. He is still not back to his

" normal " self and we stopped using it about a month ago.

I emailed Dr. McCandless several times regarding this, but she had no answer

for me as to why it occurred. We used authia cream, which she recommended and

gave it correctly in the doses we were told. The only thing different was

that he got it on his hands once and touched some coins, which turned his

hands

black. Dont know if this had anything to do with it or not, neither does Dr.

McCandless.? We are at a loss and no one could answer our questions. It was

very hard on us and we felt extremely alone and foolish for trying something

and experimenting on our child without a professional helping us.

Again, I dont want to stop anyone from trying to help their children, just

telling you what happened to us....my two cents.

------------------------------------------------------------------------------

[Guest guest]

Dr. McCandless,

My son also reacted to the Authia. We had been using Coastal's TTFD and

glutathione for a couple of months with no problem. I was surprised to see

immediate off-the-wall behavior with the Authia. I stopped and tried again a

week

later and saw the same thing. We'll stick with Coastal from now on.

Beth

[Guest guest]

Kim

Can you tell me Mayo clinic detail? I have tried to find out Mayo clinic but

never got it.

Bei

Re: TTFD - liver

I would like to interject. We are one of the few who had SEVERAL problems

with the TTFD. Our son still has not gotten over the effects of using it for

only a few days. Please be careful. Just because someone says its OK, dont

take their word as gospel. All of our kids are different and TTFD is

relatively

new in the treatment arena. When we had problems, no one could help us or

answer our questions and still cant. The Mayo Clinic saw him last month and

told

us definately NOT to use it.

Kim

------------------------------------------------------------------------------

[Guest guest]

Dr. McCandless:

Yes, we had hair testing done and the bio med doctor interpreted that he

needed chelation. The Mayo clinic said he did not.

[Guest guest]

Hello Dr. Mc:

The Mayo Clinic found some sort of tissue build up in the center of his brain

along with a myelination problem. They are doing additional genetic testing

at this point, but feel strongly that this is the reason for his PDD

behaviors. We have to go back in March for another round of testing and MRI

follow up.

Possibilities given were:

1) Fatty acid build up in his brain. His body may not be able to

metabolize certain fatty acids and they are storing in his brain.

2) Immaturity in the specific section of the brain that is now building up

with tissue.

3) Some rare genetic enzyme disorder.

My feeling is that it is #2. Possibly many of our autistic kids have this,

but do not get early intervention that is needed, thus their brain does not

have the chance to redirect/ " re-network " if you will, at the critical early age

when the brain is maturing/growing at its peak rate. Just a thought. I jumped

on my sons problems with a vengence IMMEDIATELY (18 months) , even though I

had people telling me I was nuts and that boys are slower etc etc. I followed

my intuition.

I am no doctor, but am giving you my opinion. Two very good local hospitals

did several rounds of testing on my son, including MRIs and did not pick up

this problem. The Mayo Clinic did. I am grateful that I atleast have some

sort of answer, when no one else could give it to me. I truly respect their

perseverence in finding the etiology to my sons problem.

Kim

[Guest guest]

Abbie:

My sons liver panels are high now, it could have possibly injured his liver.

We have more testing to do in March.

Kim

[Guest guest]

The Mayo Clinic is world renowned. They are located in Rochester, MN. If

you want more info, you can email me privately.

Kim

[Guest guest]

Kim: Did the doctors at Mayo clinic who told you to stop using TTFD have any

ideas as to how that may have had an effect? (It was Authia, right? And how

long had you used it?)

Thanks for your help; I would really like to understand this since I frequently

recommend it. Did they indicate any possible treatment for the build up of

lipids in the brain? Dr. JM

Re: TTFD - liver

Hello Dr. Mc:

The Mayo Clinic found some sort of tissue build up in the center of his brain

along with a myelination problem. They are doing additional genetic testing

at this point, but feel strongly that this is the reason for his PDD

behaviors. We have to go back in March for another round of testing and MRI

follow up.

Possibilities given were:

1) Fatty acid build up in his brain. His body may not be able to

metabolize certain fatty acids and they are storing in his brain.

2) Immaturity in the specific section of the brain that is now building up

with tissue.

3) Some rare genetic enzyme disorder.

My feeling is that it is #2. Possibly many of our autistic kids have this,

but do not get early intervention that is needed, thus their brain does not

have the chance to redirect/ " re-network " if you will, at the critical early

age

when the brain is maturing/growing at its peak rate. Just a thought. I jumped

on my sons problems with a vengence IMMEDIATELY (18 months) , even though I

had people telling me I was nuts and that boys are slower etc etc. I followed

my intuition.

I am no doctor, but am giving you my opinion. Two very good local hospitals

did several rounds of testing on my son, including MRIs and did not pick up

this problem. The Mayo Clinic did. I am grateful that I atleast have some

sort of answer, when no one else could give it to me. I truly respect their

perseverence in finding the etiology to my sons problem.

Kim

Many frequently asked questions and answers can be found at

<http://www.autism-rxguidebook.com/forums>

------------------------------------------------------------------------------

[Guest guest]

Dr. McCandless:

Yes, it was authia and we used it less than a week. They basically said to

stop experimenting with our son and that high amounts of certain B vitamins can

cause nerve damage to children and who knows what all the other stuff is

doing to them when there are no proven clinical studies out there.

Additionally,

they advised me to stop the B-12 shots.

Kim

[Guest guest]

Dr. Mc:

We dont have any treatment plan yet for him until the follow up MRI is done

in March to see if this build up is growing and the additional genetic testing

is in.

Kim

[Guest guest]

Dr. McCandless:

I do not mind at all. I welcome any input / expertise they may have to give.

Best Regards,

Kim

[Guest guest]

Kim: Do you have any objection if I report this to a group of DAN docs I work

with to see if anyone has any ideas? I will not give your name. Dr. JM

Re: TTFD - liver

Dr. McCandless:

Yes, it was authia and we used it less than a week. They basically said to

stop experimenting with our son and that high amounts of certain B vitamins

can

cause nerve damage to children and who knows what all the other stuff is

doing to them when there are no proven clinical studies out there.

Additionally,

they advised me to stop the B-12 shots.

Kim

Many frequently asked questions and answers can be found at

<http://www.autism-rxguidebook.com/forums>

------------------------------------------------------------------------------

[Guest guest]

Thats ok, I will clarify: It was the first time we ever used any chelation

product on our son. We used it less than a week when he went berzerk. The

coin incident occurred the 2nd day of use. We used it maybe 4 days maximum.

Kim

[Guest guest]

Hi Kim .. Thanks for your answer to my questions .. and please

forgive me for being 'dense' but I am a bit confused. Please help

me understand more clearly please if you don't mind.. you had

written to me when I asked if the authia on hands/coin incident had

happened the first time you used this- or if you had other

applications that went OK and said:

" :

yes it was the first and ONLY time I used it.

Kim "

That really seems it might be a significant clue and I'm sure many

were so interested in understanding and appreciate you sharing with

us.

But then I got confused later today (this is where my " dense " comes

in! )when you answered to Dr. M that you used it less than a

week. Did I misunderstand and you did have some other applications??

I think it is usually done daily, isn't it- or twice a day?? If so,

was there any reaction to other applications during that week's time

before he touched the coins with it on his hands?? Sorry to have to

ask for clarification but I just wanted to be sure I understood what

you were kind enough to share with her and with the list. It is

important to all of us and I know especially to the doctors who want

to better understand when something out of the ordinary happens.

Thanks for sharing with us all...

I pray for you to find answers and for your son's continued

recovery. And I do so appreciate your willingness to share your

experience which I know has been so very difficult for all of you.

Blessings to you and your wonderful son and family. And thanks again

for sharing information with us and those who treat these precious

children.

Warmly,

> Dr. McCandless:

>

> Yes, it was authia and we used it less than a week. They

basically said to

> stop experimenting with our son and that high amounts of certain B

vitamins can

> cause nerve damage to children and who knows what all the other

stuff is

> doing to them when there are no proven clinical studies out

there. Additionally,

> they advised me to stop the B-12 shots.

>

> Kim

[Guest guest]

Kim,

I know you are doing the best you can for your son, but I am also wondering, how

many autistic kids the Mayo Clinic works with and if they approach autism as a

biomedical condition or psychological?

If they do approach autism as a medical condition, what kind of things to they

do? Or have they elaborated on that for you?

I know they are one of the best places, I had surgery there in 1988 for

something no other docs could find. They solved my problem.

But it seems like so many of the mainstream medical docs just don't get it when

it comes to autism being an immune system dysfunction.

If it were not for parents taking control of their kids problems themselves, a

lot of kids would be much worse, not better. I personally know that the things

that have been done for my son have totally turned him around.

Point being, don't beat yourself up for trying to do what you thought would help

your son. And, don't give up on biomedical intervention either. there is no

easy answer and of course, we all know, no one single thing is going to help all

of these kids. They are just too individual.

Our prayers are with you, God bless your son and your family.

Re: TTFD - liver

Dr. McCandless:

Yes, it was authia and we used it less than a week. They basically said to

stop experimenting with our son and that high amounts of certain B vitamins

can

cause nerve damage to children and who knows what all the other stuff is

doing to them when there are no proven clinical studies out there.

Additionally,

they advised me to stop the B-12 shots.

Kim

Many frequently asked questions and answers can be found at

<http://www.autism-rxguidebook.com/forums<http://www.autism-rxguidebook.com/foru\

ms>>

------------------------------------------------------------------------------

[Guest guest]

:

The Mayo Clinic has a full staffed center (the Dana Center) devoted to

children with developmental disabilities. They treat thousands of kids on the

spectrum. Additionally, they are a medical facility. They treat the whole

child,

medically and physcologically. Like most major hospitals and childrens

centers, they have done many studies on biomedical treatments and do not endorse

most of them, because they have found the majority to be ineffective and

experimental on our kids..(their words, not mine, but I have found the same in

my own

personal experience to date.). If you desire to know more about them, you can

contact them directly. I am not a spokesperson for them, I only got much

needed help and ANSWERS from them that no one else was able to give.

I totally agree that many mainstream docs dont get it, but on the flip side,

may of these " so-called " bio-med docs are not honest and forthright either.

Just because they say they have treatments for our kids, dont mean they work.

Many of them are trying to make a buck on our hopes and for lack of anyone

else out there to help us. We had horrible dealings with a very well known

bio-med doc, who when approached by our DAN doc, totally denied the treatment

plan

he put in place for our son. He lied and said he never told us he needed

chelation, when he diagnosed him to us verbally with heavy metal poisoning and

put

him on tons of supplements to get him ready for chelation... We had paid this

fraud THOUSANDS of dollars and lost it all, with no way to recoup it because

he is located out of our state and only travels from state to state monthly.

You have to be careful either way you go. We are all just trying to help our

kids the best we can.

Kim