Re: Inosine & increasing ATP - Dr. JM & everyone/sensitivity to light

[Guest guest]

Thanks Dr. McCandless. Hailey is not on any meds except for guaifenesin for

fibromyalgia and the photosensitivity started way before that. I think I

noticed it beginning about the time she was 6 or 7, and now she's just

turned 13. She has no other reaction to being in the sun...no burning

(actually tans very well), no blisters, no cold sores. After I read your

response I googled some stuff and lupus kept popping up....ugh. Is that the

autoimmune illness you were thinking of, or are there others that might

produce the same symptom? Do you think if it were some sort of immune

response she could have no other symptoms of photosensitivity and it is just

connected to the eyes?

Could there be any connection there between Vit A and the alpha-G protein

receptors? She did do one megadose of the Klaire mycelized Vit A once we

got the study report back but I didn't notice anything either way. Would

you suggest trying it again or upping the daily dose?

Last question. Do you see any reason why we wouldn't want to try inosine?

If you think it'd be ok to do, what dose and a trial for how long?

The optometrist just gave her an exercise to try just in case there was an

undetected delay in the sphincter muscle in the eye to close...tissue paper

and straw tic tac toe. We'll try it all.

Thanks again,

Susi

Re: Inosine & increasing ATP - Dr. JM &

everyone

> >

> >

> > >

> > > Many adults with eye problems use inosine which infused actually can

> help

> > > optic nerves regenerate. Oral studies have never shown this benefit,

> and

> > it

> > > may be that you would have to take 5-6 grams at a time or more, and

it's

> > > hard to get this much stuff down our kids. Ecological formulas has

> > > liposine-enhanced inosine 500mg caps that Jack and I both take for eye

> > > health, but it's one of those things that is very difficult to tell

> > whether

> > > it's beneficial or not as it is preventive medicine. So, it is hard

to

> > > know, I'm sure it wouldn't hurt, and when you start prioritizing it

just

> > > hasn't made the list for my ASD kids yet. However, this

> > acetyl-l-carnitine

> > > arginate mentioned on the list this morning sounds quite promising,

and

> I

> > > have ordered some to try on some of my kids - will keep you posted.

Dr.

> > JM

> >

> >

> >

> >

> >

> >

> > Many frequently asked questions and answers can be found at

> <http://forums.autism-rxguidebook.com/default.aspx>

> >

> >

[Guest guest]

By definition, almost all children with autism struggles with autoimmune

issues, mostly set off by the vaccines and particularly with the one-two

punch of Hep B followed by MMR. Lupus is rare in our kids - so rare I have

not seen one with that diagnosis. Have you been able to do the Premier

Panel at Immunosciences? This can be a good indicator of autoimmune issues

with the Myelin Basic Protein and other brain antibody readings. However,

the treatments are non-specific and are in the category of enhancement of

the immune system (glutathione is great - have you tried the new LipoGSH for

Hailey?) Are you giving her CLO? This is the best treatment of the alpha-G

protein issue, and Dr. Megson followed this with bethanechol. Have you

tried that? If she has shown high serum rubeola titers, regressed after

MMR, and still has gut issues I would recommend the mega-dosing of A every

six months as being safe. Dr. JM

Re: Inosine & increasing ATP - Dr. JM &

> everyone

> > >

> > >

> > > >

> > > > Many adults with eye problems use inosine which infused actually can

> > help

> > > > optic nerves regenerate. Oral studies have never shown this

benefit,

> > and

> > > it

> > > > may be that you would have to take 5-6 grams at a time or more, and

> it's

> > > > hard to get this much stuff down our kids. Ecological formulas has

> > > > liposine-enhanced inosine 500mg caps that Jack and I both take for

eye

> > > > health, but it's one of those things that is very difficult to tell

> > > whether

> > > > it's beneficial or not as it is preventive medicine. So, it is hard

> to

> > > > know, I'm sure it wouldn't hurt, and when you start prioritizing it

> just

> > > > hasn't made the list for my ASD kids yet. However, this

> > > acetyl-l-carnitine

> > > > arginate mentioned on the list this morning sounds quite promising,

> and

> > I

> > > > have ordered some to try on some of my kids - will keep you posted.

> Dr.

> > > JM

> > >

> > >

> > >

> > >

> > >

> > >

> > > Many frequently asked questions and answers can be found at

> > <http://forums.autism-rxguidebook.com/default.aspx>

> > >

> > >

[Guest guest]

Inosine is non-toxic, but I have no parameters for this kind of treatment,

sorry! If you get it as a powder, just push up until you see effects, good

or bad, and please let us all know if you do this experiment. Dr. JM

Re: Inosine & increasing ATP - Dr. JM &

> everyone

> > >

> > >

> > > >

> > > > Many adults with eye problems use inosine which infused actually can

> > help

> > > > optic nerves regenerate. Oral studies have never shown this

benefit,

> > and

> > > it

> > > > may be that you would have to take 5-6 grams at a time or more, and

> it's

> > > > hard to get this much stuff down our kids. Ecological formulas has

> > > > liposine-enhanced inosine 500mg caps that Jack and I both take for

eye

> > > > health, but it's one of those things that is very difficult to tell

> > > whether

> > > > it's beneficial or not as it is preventive medicine. So, it is hard

> to

> > > > know, I'm sure it wouldn't hurt, and when you start prioritizing it

> just

> > > > hasn't made the list for my ASD kids yet. However, this

> > > acetyl-l-carnitine

> > > > arginate mentioned on the list this morning sounds quite promising,

> and

> > I

> > > > have ordered some to try on some of my kids - will keep you posted.

> Dr.

> > > JM

> > >

> > >

> > >

> > >

> > >

> > >

> > > Many frequently asked questions and answers can be found at

> > <http://forums.autism-rxguidebook.com/default.aspx>

> > >

> > >

[Guest guest]

That's a relief to hear about lupus...whew! Hailey is one of the MMR kids.

She was given her first one at the age of 6 months when the doctor thought

her brother had contracted the measles. He told me if I didn't allow her to

be vaccinated I was setting her up for encephalitis or death. He scared me

right into it. On the same day she also received the DPT, HepB and polio

vaccines which I'm assuming he decided to do to save us another trip to his

office :-( I didn't realize he'd given them until I requested her records 2

years ago. What a shock. She had a violent reaction to the vaccines which

the pediatrician responded to by saying " babies do all sorts of funny

things, give her some tylenol if it makes YOU feel better " Unfortunately

she had the second MMR at 13 months and a third one at 4 years. With each

one she got worse.

Hailey had the panel from Immunosciences done last February and she tested

positive to MBP antibodies. She also had elevated serum rubeola and

positive for the IgA salivary rubeola. Hailey is on your waiting list for

an evaluation and I'm pretty sure I included the results with all the

paperwork, so I'll be interested to hear what you think once you evaluate

her. It's been over 6 months since she did the Vit A megadose so I should

try that again. She did take CLO for a long time but it upset her stomach.

I just read tho this past week that some of the kids are having a reaction

to the flavorings in the CLO so maybe we should just try an unflavored one.

Is there an unflavored one that you prefer? I tried to convince a couple of

her doctors to try a trial of beathanechol but none of them were willing.

That's still an interest to me if I could find a doctor confortable and

knowledgeable to supervise it.

Hailey just started on the LipoGSH in mid November. It is doing GREAT

things for her. She started at 1 tsp twice a day for 3 weeks and now I've

backed down to once a day. Her symptoms of apraxia are improved, speech and

language are booming and her mood and stamina are better than they've ever

been.

Thanks so much!

Susi

Re: Inosine & increasing ATP - Dr. JM &

> > everyone

> > > >

> > > >

> > > > >

> > > > > Many adults with eye problems use inosine which infused actually

can

> > > help

> > > > > optic nerves regenerate. Oral studies have never shown this

> benefit,

> > > and

> > > > it

> > > > > may be that you would have to take 5-6 grams at a time or more,

and

> > it's

> > > > > hard to get this much stuff down our kids. Ecological formulas

has

> > > > > liposine-enhanced inosine 500mg caps that Jack and I both take for

> eye

> > > > > health, but it's one of those things that is very difficult to

tell

> > > > whether

> > > > > it's beneficial or not as it is preventive medicine. So, it is

hard

> > to

> > > > > know, I'm sure it wouldn't hurt, and when you start prioritizing

it

> > just

> > > > > hasn't made the list for my ASD kids yet. However, this

> > > > acetyl-l-carnitine

> > > > > arginate mentioned on the list this morning sounds quite

promising,

> > and

> > > I

> > > > > have ordered some to try on some of my kids - will keep you

posted.

> > Dr.

> > > > JM

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Many frequently asked questions and answers can be found at

> > > <http://forums.autism-rxguidebook.com/default.aspx>

> > > >

> > > >