Re: For Rich re: autism treatments

January 7, 2006

Hi, Sara.

It's tough to say for sure whether you are a good candidate for the

autism treatments. We don't have info on your genetic variations

(and anyway, it isn't completely known which ones count yet). There

is no commercially available test for SAMe/SAH ratio yet, which is

the best measure of the status of the methylation cycle. We do not

have experience with how you tolerate the things that are upstream

of the potential block in the methylation cycle (methionine and

SAMe). We don't know your homocysteine level. We don't have data

on your plasma amino acid levels. So we are kind of " winging it " at

this point on judging the condition of your methylation cycle.

The fact that you can tolerate NAC and oral glutathione well

suggests that the latter part of your transulfuration pathway and

your sulfoxidation are operating O.K.

You are already getting methyl B12. You are taking folic acid, but

I guess we don't know whether your body is able to convert that to

the active form of folate.

I guess I can't rule out the possibility that you have a block in

your methylation cycle from what information we currently have. In

view of that, I guess I would suggest giving the autism treatments a

try. As far as I know none of the other things you are taking

should cause problems in doing this.

So, I would suggest first adding the P5P and magnesium, and giving

that a week or two. The total B6 dose should be 500 mg per day, and

a small part of that should be P5P. The magnesium dose should be of

the order of 300 mg per day, and it should be in a form that is well

absorbed, such as glycinate, citrate, or one of the amino acid

chelated forms. Then I would suggest adding taurine, starting at

250 mg per day and working up to a gram per day or so, unless this

isn't tolerated, in which case I would suggest maintaining a dose

that is tolerated (until you have tried the folinic acid and TMG for

a while--see below).

After a week or two on the taurine, I would suggest changing the

folic acid to folinic acid. The same dose you have been using

should be O.K.

I would suggest trying this for a week or so. Then I would suggest

that you add TMG, starting low and working up to a dosage of about 1

gram per day, if it is tolerated.

I think those are the suggestions I would make. I would not suggest

adding methionine or SAMe until these other things have been done to

clear a block that might be present in the methylation cycle,

because these things would load it upstream of the potential block.

If these supplements don't give you noticeable improvement, I think

that would suggest that your methylation cycle does not have a

block. I wish there was a more straightforward way to find this

out, but right now, this might be about the best way to go.

You didn't mention whether you are taking selenium. If not, you

might consider adding 200 micrograms per day of that. The enzyme

that converts T4 to T3 needs selenium. If you have accumulated a

load of mercury in your body as a result of being low in glutathione

for an extended period while having mercury exposure from amalgams

or fish consumption, that could be tying up your selenium and

inhibiting your T4 to T3 conversion.

Rich

>

> Hi, Rich.

>

> I've read and re-read your stuff on the autism treatments. And

I'm

> interested in knowing if I'm a candidate to try this.

>

> I've been taking a lot of sulfur-related supplements, some of

them

> forever. I've been on:

>

> 1. NAC (1200 mg/daily for 5 years)

>

> 2. methyl B12 and glutathione (big doses 2x/week IM since August)

>

> 3. Folic Acid (400 mcg/daily for a decade or more)

>

> 4. L-Carnitine (800 mg/daily for a year or so)

>

> 5. Other B oral supplements. I'm considering adding p5p/magnesium

to

> the regimen.

>

> Some case history that may or may not be relevant:

>

> * I have three amalgam fillings; the newest is at least a decade

old.

> Tim Guilford gave me a course of oral chlorophyll-based mercury

> chelation about five years ago, at the same time he gave me the

NAC.

>

> * Over the past six years, I've recuperated from a point where I

> spent 4-5 days/week in bed to a point where I might spend 4/5 days

a

> month there. I am seldom sore, I sleep well, and my cognitive

level

> has made a dramatic recovery.

>

> * I've been on dessicated thyroid (not Armour brand, but a

similar

> compounded version) for 4 years, which has made a dramatic

> difference. It's very clear that my thyroid issues are not so much

on

> the T4 (production) side, but rather in the T3 conversion

process.

> There's a strong suspicion that my adrenals are deeply

insufficient

> (I'm frighteningly reactive to any kind of epinepherine or

cortisone

> medication), but this has never gotten a decent clinical

evaluation.

>

> * Like most of us, I also take a whole raft of other stuff,

including

> multiple vitamins, EFAs, bioidentical hormones, SJW and 5-HTP, and

so

> on. If there are specific supplements that are contraindicated

when

> attempting to clear methylation pathways, please let me know.

>

> * I have no idea if there are any intracellular bacteria issues.

No

> doctor has ever discussed this with me.

>

> * I've been considering trying Blasi salts, but am willing to put

> that off until after I try this, if you think that's best.

>

> * I have a constant inflammation of the lymph glands on the left

side

> of my neck and face. They've been consistently swollen for 20+

years;

> this has not improved as I've healed.

>

> * Despite my good recovery to date, I still don't react at all

well

> to any kind of exercise: I can walk slowly for a good long time,

but

> anything that challenges my lungs or muscles is still asking for

> trouble. (Half an hour of gentle yoga -- my favorite exercise --

will

> make me sore all over, and wipe me out for 1-2 days.) Also,

enough

> everyday stress will still push me into a crash. ( " Enough " is a

lot

> more than it used to be. I've got enough margin now that I can

> usually can stop well before I get to the cliff. But the cliff is

> still out there, close enough to see.)

>

> * I have never tried taurine, p5p, methionine, TMG, or SAMe. If

you

> think it would be a good idea for me to try these things, I'd

> appreciate your guidance for when, how much, and in what order

they

> should be added to my above routine.

>

> I'd like to try this to see if it will improve my fragility in

the

> face of exercise, and push the cliff out a little farther yet --

if

> you think that I'm a reasonable candidate for it.

>

> Thanks in advance for your advice.

>

> Sara

>

January 7, 2006

Bob wrote: Rich you think that what you are telling Sara would good

for me to start?When I go to the dr next week, should I get some

testing done? I was thinking of getting a diflucan IV but shoemaker

thinks they are useless so maybe get another Rocphin in case of Lyme

or GSH IV. Do we need genetic variations and something to see if the

methylation cycle is open? I know we think my GSH is okay so maybe I

should look elsewhere, such as lyme or organophosphate?

> >

> > Hi, Rich.

> >

> > I've read and re-read your stuff on the autism treatments. And

> I'm

> > interested in knowing if I'm a candidate to try this.

> >

> > I've been taking a lot of sulfur-related supplements, some of

> them

> > forever. I've been on:

> >

> > 1. NAC (1200 mg/daily for 5 years)

> >

> > 2. methyl B12 and glutathione (big doses 2x/week IM since August)

> >

> > 3. Folic Acid (400 mcg/daily for a decade or more)

> >

> > 4. L-Carnitine (800 mg/daily for a year or so)

> >

> > 5. Other B oral supplements. I'm considering adding p5p/magnesium

> to

> > the regimen.

> >

> > Some case history that may or may not be relevant:

> >

> > * I have three amalgam fillings; the newest is at least a decade

> old.

> > Tim Guilford gave me a course of oral chlorophyll-based mercury

> > chelation about five years ago, at the same time he gave me the

> NAC.

> >

> > * Over the past six years, I've recuperated from a point where I

> > spent 4-5 days/week in bed to a point where I might spend 4/5

days

> a

> > month there. I am seldom sore, I sleep well, and my cognitive

> level

> > has made a dramatic recovery.

> >

> > * I've been on dessicated thyroid (not Armour brand, but a

> similar

> > compounded version) for 4 years, which has made a dramatic

> > difference. It's very clear that my thyroid issues are not so

much

> on

> > the T4 (production) side, but rather in the T3 conversion

> process.

> > There's a strong suspicion that my adrenals are deeply

> insufficient

> > (I'm frighteningly reactive to any kind of epinepherine or

> cortisone

> > medication), but this has never gotten a decent clinical

> evaluation.

> >

> > * Like most of us, I also take a whole raft of other stuff,

> including

> > multiple vitamins, EFAs, bioidentical hormones, SJW and 5-HTP,

and

> so

> > on. If there are specific supplements that are contraindicated

> when

> > attempting to clear methylation pathways, please let me know.

> >

> > * I have no idea if there are any intracellular bacteria issues.

> No

> > doctor has ever discussed this with me.

> >

> > * I've been considering trying Blasi salts, but am willing to

put

> > that off until after I try this, if you think that's best.

> >

> > * I have a constant inflammation of the lymph glands on the left

> side

> > of my neck and face. They've been consistently swollen for 20+

> years;

> > this has not improved as I've healed.

> >

> > * Despite my good recovery to date, I still don't react at all

> well

> > to any kind of exercise: I can walk slowly for a good long time,

> but

> > anything that challenges my lungs or muscles is still asking for

> > trouble. (Half an hour of gentle yoga -- my favorite exercise --

> will

> > make me sore all over, and wipe me out for 1-2 days.) Also,

> enough

> > everyday stress will still push me into a crash. ( " Enough " is a

> lot

> > more than it used to be. I've got enough margin now that I can

> > usually can stop well before I get to the cliff. But the cliff

is

> > still out there, close enough to see.)

> >

> > * I have never tried taurine, p5p, methionine, TMG, or SAMe. If

> you

> > think it would be a good idea for me to try these things, I'd

> > appreciate your guidance for when, how much, and in what order

> they

> > should be added to my above routine.

> >

> > I'd like to try this to see if it will improve my fragility in

> the

> > face of exercise, and push the cliff out a little farther yet --

> if

> > you think that I'm a reasonable candidate for it.

> >

> > Thanks in advance for your advice.

> >

> > Sara

> >

>

January 7, 2006

In a message dated 1/7/2006 1:49:35 PM Eastern Standard Time,

alancemor@... writes:

Baschetti licorice (I find pulsing on this helpful)

http://www.jacemedical.com/store/dosage.html

Some report success with adrenal glandulars

Lance

In her book, Miracle Cures, Carper writes about a doc who cured himself

by simmering licorice roots in milk. Wonder if it is Baschetti.

I always get a good hit when I eat real licorice candy or take a cap. But

the link explaining the milk/sodium issue makes sense to me.

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

January 7, 2006

Hi Sara

Have you tried ASI

http://www.providentmedical.com/medfacts/factasi.html

(many more links avail)

Baschetti licorice (I find pulsing on this helpful)

http://www.jacemedical.com/store/dosage.html

Some report success with adrenal glandulars

Lance

>

> There's a strong suspicion that my adrenals are deeply insufficient

> (I'm frighteningly reactive to any kind of epinepherine or cortisone

> medication), but this has never gotten a decent clinical evaluation.

>

> Sara

>

< trimmed

January 7, 2006

On Jan 7, 2006, at 11:08 AM, foxhillers@... wrote:

> Some report success with adrenal glandulars

Eh. I've tried them. The results weren't impressive enough to keep me

at it.

> In her book, Miracle Cures, Carper writes about a doc who

> cured himself

> by simmering licorice roots in milk. Wonder if it is Baschetti.

>

> I always get a good hit when I eat real licorice candy or take a

> cap. But

> the link explaining the milk/sodium issue makes sense to me.

My main two sweets are ultra-dark chocolate (the good stuff, about an

ounce a day -- all those antioxidants!), and really good licorice,

for just this reason. My favorite brand is Running Rabbit, when I can

find it.

I've also used Simpler's Botanicals' licorice tincture with good

result, and usually drink a cup or two of licorice tea most days.

Even a stick of Black Jack gum will give me a little hit, though.

Licorice is about the only marginally helpful thing I've found for

the adrenals.

I'll have to look for licorice root. I've usually made tea of the

seeds and leaves. Anise is the main source for it, but fennel (which

used to grow wild and organic all over our place in California) also

has a smaller amount. (We used to eat steamed fennel root bulbs

sometimes, too. It's like eating a steamed onion with a subtle

licorice flavor. Amazing.)

Sara

January 7, 2006

Hi, Bob.

These are tough questions to answer. Every PWC is different. I know

from what you've said that it appears that you have a mold issue.

Since that can be overwhelming and can cause a lot of problems, I

think that focusing on that first would be a good idea. Dr. Shoemaker

recommends several tests in his book Mold Warriors for mold issues. I

think the first one is the visual contrast sensitivity test. Have you

had that one? It's best to take it from cards in the doctor's office,

if your doctor has them. Otherwise, it's also available online at Dr.

Shoemaker's website, http://www.chronicneurotoxins.com. You have to

register to get it, but the cost is under ten dollars.

If your VCS test results suggest that you have neurotoxins, then Dr.

Shoemaker recommends other tests. He also has a treatment protocol in

the book. If you don't have a copy, I would suggest that you consider

getting one. It's available from Amazon for 25 dollars.

Rich

Rich you think that what you are telling Sara would good

> for me to start?When I go to the dr next week, should I get some

> testing done? I was thinking of getting a diflucan IV but shoemaker

> thinks they are useless so maybe get another Rocphin in case of Lyme

> or GSH IV. Do we need genetic variations and something to see if the

> methylation cycle is open? I know we think my GSH is okay so maybe I

> should look elsewhere, such as lyme or organophosphate?

January 8, 2006

" rvankonynen " wrote:

> Every PWC is different. I know

> from what you've said that it appears that you have a mold issue.

Hi Rich.

I think you're doing a lot of great research but I'm still a bit

perplexed by how much different PWC's can be from each other and

still be completely consistent with " Chronic Fatigue Syndrome " .

Sure we all have different secondary pathogens and problems which

vary over the course of the illness, but one still must have the

primary features which consitute the syndrome, or whatever they have

doesn't fall into that category.

For example, when I say that CFS moved through Incline in a manner

that absolutely precludes stress causality, as in " Half a girls

basketball team simultaneously... " and " Nine teachers in a single

room " , the response is that CFS has moved on, there are many

subsets, and that CFS can be more or less caused by anything and

everything.

But that means you aren't looking at anything like the CFS I know

of. We had the raging flu like illness from Hell that jokesters

called " The Yuppie Flu " . Seen a lot of sick people with a lot of

different symptoms, but those who didn't have that Yuppie Flu aren't

quite like us.

Which criteria are you employing when you say " CFS " ?

And, amazingly enough, all the Yuppie Flu type CFSers I've

accompanied into mycotoxin zones share the same type of adverse

response.

-

January 8, 2006

I failed RS's online VCS test, and the questions said I was highly MCS as well.

I dont' 'feel' MCS, and dont' react badly to mold or other sources... well I

don't go seeking them out either. I did try Cholestyramine for awhile, it did

nothing for me good or bad.

Marcia