Re: Lack of progress, ANDY your comments please?

[Guest guest]

I beleive one should start by determining EXACTLY what is wrong with a person.

It is not good enough to say a child has autism. Autism seems to vary according

to the person.

Testing is important. Have you performed all tests as recommended by

McCandless? Have you tested for high testosterone? Have you

performed a genetic analysis from Amy Yasko? Have you been checking porphyrin

levels? Have you tested ammonia levels?

Once you know what is wrong (or as close as possible), you can determine what

to do.-- Much less of try this, try that approach.

The folks here don't talk much about HBOT. Based on my son's experience with

HBOT, 100% O2, 1.5 ATA was a bad one. My son got worse! Many doctors believe

that HBOT, 100% O2 should be used only when the poison (heavy metal) comes out.

Metals shift around and things get worse. HBOT is an awesome tool but should be

used after detox. Perhaps, HBOT, 40% O2 is a better bet. Your statement

regarding gains which do not last tells me that your child may be having

problems similar to my boy.

You don't mention trying MB12. MB12 is awesome if your kid is a responder.

If he is not a responder, Amy Yasko tells of ways to make him a responder.

Keep trying. We've been there, done that.

There is always hope.

Regards,

Anita Kugelstadt <mysuperteach@...> wrote:

Listmates,

My son, who will be four in February, has been chelated 50 rounds, had

one viral protocol, 80 HBOT dives, numerous supplements, different

diets.

We have seen great progress. But, sadly, we have lost almost all of

the gains we've made. This was painfully obvious during the Christmas

holidays. As difficult as it is to admit, ds is nowhere near the place

he was about 6 weeks after our first intervention almost two years ago,

going GFCF (as with all things, almost all the gains disappeared)

although he is still better than right after his regression--that,

however, isn't saying much.

I am hoping to get some feedback on particular issues so I can make

some decisions. Forgive my very long post.

Chelation: we have chelated AC protocol DMSA/ALA for 50 rounds. We

have not seen any gains from chelation since the initial 10 rounds. Is

it possible that we are still in the plateau period? Testing shows

that ds is excreting (lead, mercury, antimony, aluminum, all the

usuals). There is a great deal of talk about kids who don't tolerate

the sulfur chelators. Is is possible that someone could build up an

intolerance that would manifest as lack of progress? Am I just being

impatient?

Viral issues: our viral protocol gave us some good gains, most of

which slowly disappeared after 3 months. I am unwilling to do another

viral protocol without taking some steps to try to ensure that hard-

earned gains won't be lost. Instead, I decided to try NCD based on

some parent reports that it is doing something virally. I used it for

only 9 days and had built up to 4 drops/day on the 9th day. At that

dosage, my son started having absence seizures (as he had done during

our last viral protocol) and also very large blisters appeared on the

palms of his hands. I had thought we had let him burn himself somehow

and he hadn't felt pain and consequently hadn't cried--but in

retrospect these were not burn blisters. The palms of his hands were

about 1/5 covered in these blisters. His entire palms peeled as did

his toes a few days later.

HBOT: 80 dives at 1.5 ATA 100% oxygen. Again, almost all gains

completely lost.

GUT ISSUES: ds still struggles with constipation. Testing shows that

in spite of supplementation, many nutrient levels are still very very

low. GFCF worked briefly and spectacularly and then didn't. A second

trial of it showed nothing except a lot more yeast to deal with. Low

protein, low glutamic acid diet showed now improvements. LOD gave huge

constipation but no improvements (it was a short trial, but ds has no

markers of a good candidate). We use houston enzymes. Finally, I will

be going SCD in a few weeks but with little optimism.

SUPPLEMENTS TRIED:

Calcium, magnesium, zinc, Vitamins C, D, E, K, B (all of them), CLO,

fish oil, colostrum, houstons enzymes, epicor, adrenal support, tons of

probiotics, candex, GSE, OoO, phosphatidylcholine, evening primrose

oil, taurine, custom amino blend, s. boulardii, selenium, moly, CoQ10,

milk thistle, vanadium, chromium picolinate, transfer factor, heme

supps for iron, biotin, AKA, virastop, laurcidin, elderberry,

inflammation control, melatonin, l-carnitine, and probably some others

I've forgotten.

We sometimes see gains but they rarely last. Journals and ATEC prove

this.

DS is still very much in his own world, non-verbal, non-engaged with

his family. He is affectionate with me, sleeps better than before, and

has a few splinter skills. I do know this is a long haul for most of

us, and I'm not expecting overnight miracles. I would truly appreciate

any comments or suggestions people might have on the information I've

provided here.

Most gratefully,

Anita

A special message for any anti-biomedical trolls who might be reading

this with sanctimonious pleasure: sod off.

__________________________________________________

[Guest guest]

Anita,

It is maddening how many times I have seen some kids who turn around with a few

interventions and others who when you move the world, not much happens, or it

happens for awhile then reverts back to base.

Feeling guilty as when you first came here I did not know of this phenomena and

filled your head with all kinds of unrealistic expectations as I had really

thought given your boy's age your journey would be a cake walk, for that I am

deeply sorry.

Does he appear better on the chelators or during a round than off?

It's also interesting, not in any good way that antivirals bring out seizure

activity and I would think that is associated with mercury being moved and I

know antivirals don't have any properties which would make that happen.

I don't have the answers you're looking for, hoping Andy does, just wanted to

say I don't know anybody who has worked any harder than you have and you've

crossed a lot of things off your list. Just wanted to say we are thinking of you

here and hoping the New Year brings you some well deserved answers.

And, btw, can you give me a clue as to what sod means, never quite heard that

one....but I live a sheltered life?

[ ] Lack of progress, ANDY your comments please?

Listmates,

My son, who will be four in February, has been chelated 50 rounds, had

one viral protocol, 80 HBOT dives, numerous supplements, different

diets.

We have seen great progress. But, sadly, we have lost almost all of

the gains we've made. This was painfully obvious during the Christmas

holidays. As difficult as it is to admit, ds is nowhere near the place

he was about 6 weeks after our first intervention almost two years ago,

going GFCF (as with all things, almost all the gains disappeared)

although he is still better than right after his regression--that,

however, isn't saying much.

I am hoping to get some feedback on particular issues so I can make

some decisions. Forgive my very long post.

Chelation: we have chelated AC protocol DMSA/ALA for 50 rounds. We

have not seen any gains from chelation since the initial 10 rounds. Is

it possible that we are still in the plateau period? Testing shows

that ds is excreting (lead, mercury, antimony, aluminum, all the

usuals). There is a great deal of talk about kids who don't tolerate

the sulfur chelators. Is is possible that someone could build up an

intolerance that would manifest as lack of progress? Am I just being

impatient?

Viral issues: our viral protocol gave us some good gains, most of

which slowly disappeared after 3 months. I am unwilling to do another

viral protocol without taking some steps to try to ensure that hard-

earned gains won't be lost. Instead, I decided to try NCD based on

some parent reports that it is doing something virally. I used it for

only 9 days and had built up to 4 drops/day on the 9th day. At that

dosage, my son started having absence seizures (as he had done during

our last viral protocol) and also very large blisters appeared on the

palms of his hands. I had thought we had let him burn himself somehow

and he hadn't felt pain and consequently hadn't cried--but in

retrospect these were not burn blisters. The palms of his hands were

about 1/5 covered in these blisters. His entire palms peeled as did

his toes a few days later.

HBOT: 80 dives at 1.5 ATA 100% oxygen. Again, almost all gains

completely lost.

GUT ISSUES: ds still struggles with constipation. Testing shows that

in spite of supplementation, many nutrient levels are still very very

low. GFCF worked briefly and spectacularly and then didn't. A second

trial of it showed nothing except a lot more yeast to deal with. Low

protein, low glutamic acid diet showed now improvements. LOD gave huge

constipation but no improvements (it was a short trial, but ds has no

markers of a good candidate). We use houston enzymes. Finally, I will

be going SCD in a few weeks but with little optimism.

SUPPLEMENTS TRIED:

Calcium, magnesium, zinc, Vitamins C, D, E, K, B (all of them), CLO,

fish oil, colostrum, houstons enzymes, epicor, adrenal support, tons of

probiotics, candex, GSE, OoO, phosphatidylcholine, evening primrose

oil, taurine, custom amino blend, s. boulardii, selenium, moly, CoQ10,

milk thistle, vanadium, chromium picolinate, transfer factor, heme

supps for iron, biotin, AKA, virastop, laurcidin, elderberry,

inflammation control, melatonin, l-carnitine, and probably some others

I've forgotten.

We sometimes see gains but they rarely last. Journals and ATEC prove

this.

DS is still very much in his own world, non-verbal, non-engaged with

his family. He is affectionate with me, sleeps better than before, and

has a few splinter skills. I do know this is a long haul for most of

us, and I'm not expecting overnight miracles. I would truly appreciate

any comments or suggestions people might have on the information I've

provided here.

Most gratefully,

Anita

A special message for any anti-biomedical trolls who might be reading

this with sanctimonious pleasure: sod off.

[Guest guest]

I don't know, Abid, if we had waited until we determined EXACTLY what was wrong,

we would still be back there. Perfect little hair test and supplements the

cause of lots of improvements. No stimming or other obvious signs of autism, no

don't think there is any harm done with just 5 rounds of chelators to see if

maybe mercury is the problem.

And we knew on the third day of the first round, took just three days to see

what we were dealing with. We couldn't find a dr to do all the test dr jmmc

does. Porphyrin testing wasn't available.

Nice to have all that, but not always necessary.

I do agree about the HBOT, might not be a good idea until mercury is gone and

then what would be the point?

Re: [ ] Lack of progress, ANDY your comments please?

I beleive one should start by determining EXACTLY what is wrong with a person.

It is not good enough to say a child has autism. Autism seems to vary according

to the person.

Testing is important. Have you performed all tests as recommended by

McCandless? Have you tested for high testosterone? Have you performed

a genetic analysis from Amy Yasko? Have you been checking porphyrin levels? Have

you tested ammonia levels?

Once you know what is wrong (or as close as possible), you can determine what

to do.-- Much less of try this, try that approach.

The folks here don't talk much about HBOT. Based on my son's experience with

HBOT, 100% O2, 1.5 ATA was a bad one. My son got worse! Many doctors believe

that HBOT, 100% O2 should be used only when the poison (heavy metal) comes out.

Metals shift around and things get worse. HBOT is an awesome tool but should be

used after detox. Perhaps, HBOT, 40% O2 is a better bet. Your statement

regarding gains which do not last tells me that your child may be having

problems similar to my boy.

You don't mention trying MB12. MB12 is awesome if your kid is a responder. If

he is not a responder, Amy Yasko tells of ways to make him a responder.

Keep trying. We've been there, done that.

There is always hope.

Regards,

Anita Kugelstadt <mysuperteach@...> wrote:

Listmates,

My son, who will be four in February, has been chelated 50 rounds, had

one viral protocol, 80 HBOT dives, numerous supplements, different

diets.

We have seen great progress. But, sadly, we have lost almost all of

the gains we've made. This was painfully obvious during the Christmas

holidays. As difficult as it is to admit, ds is nowhere near the place

he was about 6 weeks after our first intervention almost two years ago,

going GFCF (as with all things, almost all the gains disappeared)

although he is still better than right after his regression--that,

however, isn't saying much.

I am hoping to get some feedback on particular issues so I can make

some decisions. Forgive my very long post.

Chelation: we have chelated AC protocol DMSA/ALA for 50 rounds. We

have not seen any gains from chelation since the initial 10 rounds. Is

it possible that we are still in the plateau period? Testing shows

that ds is excreting (lead, mercury, antimony, aluminum, all the

usuals). There is a great deal of talk about kids who don't tolerate

the sulfur chelators. Is is possible that someone could build up an

intolerance that would manifest as lack of progress? Am I just being

impatient?

Viral issues: our viral protocol gave us some good gains, most of

which slowly disappeared after 3 months. I am unwilling to do another

viral protocol without taking some steps to try to ensure that hard-

earned gains won't be lost. Instead, I decided to try NCD based on

some parent reports that it is doing something virally. I used it for

only 9 days and had built up to 4 drops/day on the 9th day. At that

dosage, my son started having absence seizures (as he had done during

our last viral protocol) and also very large blisters appeared on the

palms of his hands. I had thought we had let him burn himself somehow

and he hadn't felt pain and consequently hadn't cried--but in

retrospect these were not burn blisters. The palms of his hands were

about 1/5 covered in these blisters. His entire palms peeled as did

his toes a few days later.

HBOT: 80 dives at 1.5 ATA 100% oxygen. Again, almost all gains

completely lost.

GUT ISSUES: ds still struggles with constipation. Testing shows that

in spite of supplementation, many nutrient levels are still very very

low. GFCF worked briefly and spectacularly and then didn't. A second

trial of it showed nothing except a lot more yeast to deal with. Low

protein, low glutamic acid diet showed now improvements. LOD gave huge

constipation but no improvements (it was a short trial, but ds has no

markers of a good candidate). We use houston enzymes. Finally, I will

be going SCD in a few weeks but with little optimism.

SUPPLEMENTS TRIED:

Calcium, magnesium, zinc, Vitamins C, D, E, K, B (all of them), CLO,

fish oil, colostrum, houstons enzymes, epicor, adrenal support, tons of

probiotics, candex, GSE, OoO, phosphatidylcholine, evening primrose

oil, taurine, custom amino blend, s. boulardii, selenium, moly, CoQ10,

milk thistle, vanadium, chromium picolinate, transfer factor, heme

supps for iron, biotin, AKA, virastop, laurcidin, elderberry,

inflammation control, melatonin, l-carnitine, and probably some others

I've forgotten.

We sometimes see gains but they rarely last. Journals and ATEC prove

this.

DS is still very much in his own world, non-verbal, non-engaged with

his family. He is affectionate with me, sleeps better than before, and

has a few splinter skills. I do know this is a long haul for most of

us, and I'm not expecting overnight miracles. I would truly appreciate

any comments or suggestions people might have on the information I've

provided here.

Most gratefully,

Anita

A special message for any anti-biomedical trolls who might be reading

this with sanctimonious pleasure: sod off.

__________________________________________________

[Guest guest]

Excellent point . It may be impossible to determine EXACTLY what is

wrong with an autistic (mercury poisoning, viral issues etc). If we knew how

autism worked, then there would be no puzzle.

However, we can do as much testing as is available and affordable.

Agreed that we can start chelation prior to testing -- and should not wait to

test.

I started testing after MB12 & HBOT.

Sometimes testing will tell us why our kids are not getting better. Is it

yeast? Is it high testosterone? Is it a high viral count? Testing will help.

The only place testing hurts is the wallet and trips to the lab.

Regarding HBOT -- if the heavy metals are gone, damage can remain. HBOT has

been able to awaken dormant cells.

Some docs believe in slow, low and constant dosing of HBOT. I may try that

next year (budget depending). HBOT 40% O2 -- called a soft chamber.

Cochran <Ladyshrink111@...> wrote:

I don't know, Abid, if we had waited until we determined EXACTLY what

was wrong, we would still be back there. Perfect little hair test and

supplements the cause of lots of improvements. No stimming or other obvious

signs of autism, no don't think there is any harm done with just 5 rounds of

chelators to see if maybe mercury is the problem.

And we knew on the third day of the first round, took just three days to see

what we were dealing with. We couldn't find a dr to do all the test dr jmmc

does. Porphyrin testing wasn't available.

Nice to have all that, but not always necessary.

I do agree about the HBOT, might not be a good idea until mercury is gone and

then what would be the point?

Re: [ ] Lack of progress, ANDY your comments please?

I beleive one should start by determining EXACTLY what is wrong with a person.

It is not good enough to say a child has autism. Autism seems to vary according

to the person.

Testing is important. Have you performed all tests as recommended by

McCandless? Have you tested for high testosterone? Have you performed a genetic

analysis from Amy Yasko? Have you been checking porphyrin levels? Have you

tested ammonia levels?

Once you know what is wrong (or as close as possible), you can determine what to

do.-- Much less of try this, try that approach.

The folks here don't talk much about HBOT. Based on my son's experience with

HBOT, 100% O2, 1.5 ATA was a bad one. My son got worse! Many doctors believe

that HBOT, 100% O2 should be used only when the poison (heavy metal) comes out.

Metals shift around and things get worse. HBOT is an awesome tool but should be

used after detox. Perhaps, HBOT, 40% O2 is a better bet. Your statement

regarding gains which do not last tells me that your child may be having

problems similar to my boy.

You don't mention trying MB12. MB12 is awesome if your kid is a responder. If he

is not a responder, Amy Yasko tells of ways to make him a responder.

Keep trying. We've been there, done that.

There is always hope.

Regards,

Anita Kugelstadt <mysuperteach@...> wrote:

Listmates,

My son, who will be four in February, has been chelated 50 rounds, had

one viral protocol, 80 HBOT dives, numerous supplements, different

diets.

We have seen great progress. But, sadly, we have lost almost all of

the gains we've made. This was painfully obvious during the Christmas

holidays. As difficult as it is to admit, ds is nowhere near the place

he was about 6 weeks after our first intervention almost two years ago,

going GFCF (as with all things, almost all the gains disappeared)

although he is still better than right after his regression--that,

however, isn't saying much.

I am hoping to get some feedback on particular issues so I can make

some decisions. Forgive my very long post.

Chelation: we have chelated AC protocol DMSA/ALA for 50 rounds. We

have not seen any gains from chelation since the initial 10 rounds. Is

it possible that we are still in the plateau period? Testing shows

that ds is excreting (lead, mercury, antimony, aluminum, all the

usuals). There is a great deal of talk about kids who don't tolerate

the sulfur chelators. Is is possible that someone could build up an

intolerance that would manifest as lack of progress? Am I just being

impatient?

Viral issues: our viral protocol gave us some good gains, most of

which slowly disappeared after 3 months. I am unwilling to do another

viral protocol without taking some steps to try to ensure that hard-

earned gains won't be lost. Instead, I decided to try NCD based on

some parent reports that it is doing something virally. I used it for

only 9 days and had built up to 4 drops/day on the 9th day. At that

dosage, my son started having absence seizures (as he had done during

our last viral protocol) and also very large blisters appeared on the

palms of his hands. I had thought we had let him burn himself somehow

and he hadn't felt pain and consequently hadn't cried--but in

retrospect these were not burn blisters. The palms of his hands were

about 1/5 covered in these blisters. His entire palms peeled as did

his toes a few days later.

HBOT: 80 dives at 1.5 ATA 100% oxygen. Again, almost all gains

completely lost.

GUT ISSUES: ds still struggles with constipation. Testing shows that

in spite of supplementation, many nutrient levels are still very very

low. GFCF worked briefly and spectacularly and then didn't. A second

trial of it showed nothing except a lot more yeast to deal with. Low

protein, low glutamic acid diet showed now improvements. LOD gave huge

constipation but no improvements (it was a short trial, but ds has no

markers of a good candidate). We use houston enzymes. Finally, I will

be going SCD in a few weeks but with little optimism.

SUPPLEMENTS TRIED:

Calcium, magnesium, zinc, Vitamins C, D, E, K, B (all of them), CLO,

fish oil, colostrum, houstons enzymes, epicor, adrenal support, tons of

probiotics, candex, GSE, OoO, phosphatidylcholine, evening primrose

oil, taurine, custom amino blend, s. boulardii, selenium, moly, CoQ10,

milk thistle, vanadium, chromium picolinate, transfer factor, heme

supps for iron, biotin, AKA, virastop, laurcidin, elderberry,

inflammation control, melatonin, l-carnitine, and probably some others

I've forgotten.

We sometimes see gains but they rarely last. Journals and ATEC prove

this.

DS is still very much in his own world, non-verbal, non-engaged with

his family. He is affectionate with me, sleeps better than before, and

has a few splinter skills. I do know this is a long haul for most of

us, and I'm not expecting overnight miracles. I would truly appreciate

any comments or suggestions people might have on the information I've

provided here.

Most gratefully,

Anita

A special message for any anti-biomedical trolls who might be reading

this with sanctimonious pleasure: sod off.

__________________________________________________

[Guest guest]

Hello Anita,

Since nothing seems to be working at this point, I'd reduce or

eliminate all of the supplements. I found that my daughter does better

without most of what I'd been giving her.

Like your son, my daughter has major gut issues. In our case, it is to

many foods and to most supplements. She is now on her 28th round of

DMSA. I was very hesitant to chelate without having certain

supplements on board. What I found was that she did better without them.

At this point, she only gets Neutrophil Plus, a probiotic, sublingual

B12, Houston enzymes and magnesium citrate.

I'd hope that she'd be further along, but we are seeing slow gradual

improvements. Last year she couldn't be in the same room as a digital

clock or be within earshot of her brother's shrieking, wretched

cartoons, but this year she can. For us, this has made life much easier.

You've been an inspiration to me. I wish you and your family a

breakthrough in 2007.

Orelindel

>

We use houston enzymes. Finally, I will

> be going SCD in a few weeks but with little optimism.

>

> SUPPLEMENTS TRIED:

>

> Calcium, magnesium, zinc, Vitamins C, D, E, K, B (all of them), CLO,

> fish oil, colostrum, houstons enzymes, epicor, adrenal support, tons of

> probiotics, candex, GSE, OoO, phosphatidylcholine, evening primrose

> oil, taurine, custom amino blend, s. boulardii, selenium, moly, CoQ10,

> milk thistle, vanadium, chromium picolinate, transfer factor, heme

> supps for iron, biotin, AKA, virastop, laurcidin, elderberry,

> inflammation control, melatonin, l-carnitine, and probably some others

> I've forgotten.

>

> his family. He is affectionate with me, sleeps better than before, and

> has a few splinter skills. I do know this is a long haul for most of

> us, and I'm not expecting overnight miracles. I would truly appreciate

> any comments or suggestions people might have on the information I've

> provided here.

>

> Most gratefully,

>

> Anita

>

> A special message for any anti-biomedical trolls who might be reading

> this with sanctimonious pleasure: sod off.

>

[Guest guest]

> We have seen great progress. But, sadly, we have lost almost all of

> the gains we've made.

This happened to my son after basically EVERY intervention.

Anti-virals were the most effective, but last week he regressed YET

AGAIN! [This will be the subject of my new site update, which I will

post tomorrow.] I learned that he now has mineral deficiency

[previously mineral toxic].

Try dropping all the supplements. For my son, once he no longer

needed a supplement, it would tend to cause the same problems that it

initially eliminated. Then, add them back at 1/4 dose, one at a time,

and see what each one now does.

> Chelation: we have chelated AC protocol DMSA/ALA for 50 rounds. We

> have not seen any gains from chelation since the initial 10 rounds. Is

> it possible that we are still in the plateau period?

For my son, the only thing that chelation really did, was allow him to

tolerate foods and supplements. It was the supplements that caused

the improvements.

> Viral issues: our viral protocol gave us some good gains, most of

> which slowly disappeared after 3 months.

For my kids, vitamin C was essential to keep the viruses from just

going right back into his brain.

I will give you some info on certain of the supplements that you

listed. This info is for my kids, maybe something here will help your

child.

> Calcium,

Calcium toxic, required IP6 to demineralize. Recently calcium

deficient, but have to give it [low doses only, because of previous

toxicity] with magnesium, vitamin D and K, otherwise calcium causes

problems.

>> magnesium,

Needed LOTS of this, more than 2000mg per day for several months,

because certain other supplements pulled a LOT of magnesium.

>> zinc,

This helped for a while, then caused problems.

>>Vitamins C,

Needed LOTS of this, up to 45 grams per day for a few months. This

kept new viruses from migrating into his brain. Also appears to have

pulled resident viruses out of his brain.

>> D, E, K,

D and K are required for calcium absorption. E was fully loaded early on.

>> B (all of them),

Did not tolerate these [and almost all of the other supplements

listed] until about round 50 of ALA chelation, at which point I gave

high doses with great improvements.

>> CLO,

> fish oil,

Caused massive constipation and severe aggression until mito cocktail,

amino acids, and preloading with evening primrose and flax oil.

>> colostrum, houstons enzymes,

Worked well. Once no longer needed, they started causing problems.

>>epicor, adrenal support,

Never used these.

>> tons of

> probiotics, candex, GSE, OoO,

These cause problems now, even probiotics.

>>phosphatidylcholine,

Never used this.

>> evening primrose

> oil, taurine, custom amino blend,

See above.

>>s. boulardii,

Never used this.

>> selenium,

Caused nice improvements.

>>moly,

Recently added, seems to be beneficial.

>> CoQ10,

Required for mito cocktail, for maybe 8 months.

> milk thistle,

Helpful for a few months.

>> vanadium,

Never used this.

>> chromium picolinate,

Seems good for now.

>> transfer factor,

Never used this.

>> heme

> supps for iron,

My son was iron toxic, never used this. Required IP6 to reduce toxicity.

>> biotin,

Was very helpful to keep yeast under control. For #1 and #4,

eliminated thin, frizzy hair. For #4, was one of the key supplements

to keep her one eye from wandering outward.

>> AKA,

Never used this.

>> virastop, laurcidin,

Can't use these now, but were very helpful in the past. Lauricidin

required other supplements first, before it was tolerated.

Have you ever considered high dose vitamin A?

>> elderberry,

> inflammation control, melatonin,

Never used these.

>> l-carnitine,

Helpful as part of mito cocktail. Appears to be giving #1 and #3 a

growth spurt, which #3 desperately needs and #1 is happy to be growing

but has gone from size 14 pants to size 18 pants in four months so my

budget is shot!

> DS is still very much in his own world, non-verbal, non-engaged with

> his family.

What my son needed for language is here

http://www.danasview.net/issues.htm

List all his current issues. It was analyzing issues that lead me to

find what my son needed.

> A special message for any anti-biomedical trolls who might be reading

> this with sanctimonious pleasure: sod off.

Good for you! Every time my son regresses again, it makes me wonder

just how much is genetic. But I keep telling myself " none of it! " and

then find the cause of the new regression.

Keep going, you will find what your child needs.

Dana

[Guest guest]

>

> Listmates,

>

>

> We have seen great progress. But, sadly, we have lost almost all of

> the gains we've made. This was painfully obvious during the

Christmas

> holidays.

Anita

I'm so sorry to hear of your struggles. We have had the same thing

here with gains/losses so many times and it is extremely frustrating.

Every time the words " flu shot " enter into my mind, I practically fall

apart inside. My heart and prayers go out to you and your family for

faith and endurance.

One of the things that we have had some good sustained success with

lately is a low-slow viral attack, along with continued chelation. The

short term high dose viral approach was a complete bust for us here.

The yeast is an ongoing nightmare, but she has gained 4 months in total

language over a 4 month time frame! Attention and ability to follow

directions is better than it has ever been. Prior to this time her

language gains were MUCH slower and would come and go ALL the time.

I know that you have already done a lot of viral things, but I do

believe that for many of the children who continue to struggle that far

into chelation, viruses are a much bigger issue than we ever

imagined. Maybe this could be something for you to consider. As

others have suggested I would also consider dropping some or all of the

supps for a week or so. I've done this a few times and it helped me

to figure out what was doing what.

Sorry that I can't be more helpful, but do want to encourage you as you

have always been an big help and encouragement for me. Hopefully,

Andy will offer some guidance.

Sheresa

[Guest guest]

>But, sadly, we have lost almost all of

> the gains we've made.

Oh Anita, my heart is breaking with you.

Do you think that something is masking the gains -- a food thing, an

intolerance reaction, something?

Did you email Andy this message number?

I'm going to try to think about this. Would you rank the interventions

in order of which things got the best inital response, even if that

response faded?

Nell

[Guest guest]

Hi Sheresa,

Would you mind posting more information on the viral attack you use?

We continue to chelate, but need to start thinking about our next step.

Thanks in advance,

Orelindel

>

> One of the things that we have had some good sustained success with

> lately is a low-slow viral attack, along with continued chelation. The

> short term high dose viral approach was a complete bust for us here.

> The yeast is an ongoing nightmare, but she has gained 4 months in total

> language over a 4 month time frame! Attention and ability to follow

> directions is better than it has ever been. Prior to this time her

> language gains were MUCH slower and would come and go ALL the time.

>

> Sheresa

>

[Guest guest]

If you haven';t done it, you need to get an EEG and try antiseizure medications

(even if the

EEG is " fine, " ), to see if this is part of the problem. I would suggest a trial

of at least 2

kinds of agents. Take a chelation break during this time - a couple of weeks on

each

agent is enough. Do note that you need to WITHDRAW the agents slowly or you can

induce seizures.

If you have had this kind of normal medical work-up, or have tried these drugs,

please

add it to the post below, repost it all (for convenience) and send me the post

number

privately.

If you do try a couple of antiseizure meds and a chelation break and there is

still no

improvement, please repost this all with that informnation too and again send me

the post

number privately so I answer it.

Also it would be very helpful to know more about the testing and specifically

whether

there was a hair test.

Andy

>

> Listmates,

>

> My son, who will be four in February, has been chelated 50 rounds, had

> one viral protocol, 80 HBOT dives, numerous supplements, different

> diets.

>

> We have seen great progress. But, sadly, we have lost almost all of

> the gains we've made. This was painfully obvious during the Christmas

> holidays. As difficult as it is to admit, ds is nowhere near the place

> he was about 6 weeks after our first intervention almost two years ago,

> going GFCF (as with all things, almost all the gains disappeared)

> although he is still better than right after his regression--that,

> however, isn't saying much.

>

> I am hoping to get some feedback on particular issues so I can make

> some decisions. Forgive my very long post.

>

> Chelation: we have chelated AC protocol DMSA/ALA for 50 rounds. We

> have not seen any gains from chelation since the initial 10 rounds. Is

> it possible that we are still in the plateau period? Testing shows

> that ds is excreting (lead, mercury, antimony, aluminum, all the

> usuals). There is a great deal of talk about kids who don't tolerate

> the sulfur chelators. Is is possible that someone could build up an

> intolerance that would manifest as lack of progress? Am I just being

> impatient?

>

> Viral issues: our viral protocol gave us some good gains, most of

> which slowly disappeared after 3 months. I am unwilling to do another

> viral protocol without taking some steps to try to ensure that hard-

> earned gains won't be lost. Instead, I decided to try NCD based on

> some parent reports that it is doing something virally. I used it for

> only 9 days and had built up to 4 drops/day on the 9th day. At that

> dosage, my son started having absence seizures (as he had done during

> our last viral protocol) and also very large blisters appeared on the

> palms of his hands. I had thought we had let him burn himself somehow

> and he hadn't felt pain and consequently hadn't cried--but in

> retrospect these were not burn blisters. The palms of his hands were

> about 1/5 covered in these blisters. His entire palms peeled as did

> his toes a few days later.

>

> HBOT: 80 dives at 1.5 ATA 100% oxygen. Again, almost all gains

> completely lost.

>

> GUT ISSUES: ds still struggles with constipation. Testing shows that

> in spite of supplementation, many nutrient levels are still very very

> low. GFCF worked briefly and spectacularly and then didn't. A second

> trial of it showed nothing except a lot more yeast to deal with. Low

> protein, low glutamic acid diet showed now improvements. LOD gave huge

> constipation but no improvements (it was a short trial, but ds has no

> markers of a good candidate). We use houston enzymes. Finally, I will

> be going SCD in a few weeks but with little optimism.

>

> SUPPLEMENTS TRIED:

>

> Calcium, magnesium, zinc, Vitamins C, D, E, K, B (all of them), CLO,

> fish oil, colostrum, houstons enzymes, epicor, adrenal support, tons of

> probiotics, candex, GSE, OoO, phosphatidylcholine, evening primrose

> oil, taurine, custom amino blend, s. boulardii, selenium, moly, CoQ10,

> milk thistle, vanadium, chromium picolinate, transfer factor, heme

> supps for iron, biotin, AKA, virastop, laurcidin, elderberry,

> inflammation control, melatonin, l-carnitine, and probably some others

> I've forgotten.

>

> We sometimes see gains but they rarely last. Journals and ATEC prove

> this.

>

> DS is still very much in his own world, non-verbal, non-engaged with

> his family. He is affectionate with me, sleeps better than before, and

> has a few splinter skills. I do know this is a long haul for most of

> us, and I'm not expecting overnight miracles. I would truly appreciate

> any comments or suggestions people might have on the information I've

> provided here.

>

> Most gratefully,

>

> Anita

>

> A special message for any anti-biomedical trolls who might be reading

> this with sanctimonious pleasure: sod off.

>

[Guest guest]

> Listmates,

>

> My son, who will be four in February, has been chelated 50 rounds,

had

> one viral protocol, 80 HBOT dives, numerous supplements, different

> diets.

>

> We have seen great progress. But, sadly, we have lost almost all of

> the gains we've made. This was painfully obvious during the

Christmas

> holidays. As difficult as it is to admit, ds is nowhere near the

place

> he was about 6 weeks after our first intervention almost two years

ago,

> going GFCF (as with all things, almost all the gains disappeared)

> although he is still better than right after his regression--that,

> however, isn't saying much.

>

> I am hoping to get some feedback on particular issues so I can make

> some decisions. Forgive my very long post.

>

> Chelation: we have chelated AC protocol DMSA/ALA for 50 rounds. We

> have not seen any gains from chelation since the initial 10 rounds.

Is

> it possible that we are still in the plateau period? Testing shows

> that ds is excreting (lead, mercury, antimony, aluminum, all the

> usuals). There is a great deal of talk about kids who don't

tolerate

> the sulfur chelators. Is is possible that someone could build up an

> intolerance that would manifest as lack of progress? Am I just

being

> impatient?

>

> Viral issues: our viral protocol gave us some good gains, most of

> which slowly disappeared after 3 months. I am unwilling to do

another

> viral protocol without taking some steps to try to ensure that hard-

> earned gains won't be lost. Instead, I decided to try NCD based on

> some parent reports that it is doing something virally. I used it

for

> only 9 days and had built up to 4 drops/day on the 9th day. At that

> dosage, my son started having absence seizures (as he had done

during

> our last viral protocol) and also very large blisters appeared on

the

> palms of his hands. I had thought we had let him burn himself

somehow

> and he hadn't felt pain and consequently hadn't cried--but in

> retrospect these were not burn blisters. The palms of his hands

were

> about 1/5 covered in these blisters. His entire palms peeled as did

> his toes a few days later.

>

> HBOT: 80 dives at 1.5 ATA 100% oxygen. Again, almost all gains

> completely lost.

>

> GUT ISSUES: ds still struggles with constipation. Testing shows

that

> in spite of supplementation, many nutrient levels are still very

very

> low. GFCF worked briefly and spectacularly and then didn't. A

second

> trial of it showed nothing except a lot more yeast to deal with.

Low

> protein, low glutamic acid diet showed now improvements. LOD gave

huge

> constipation but no improvements (it was a short trial, but ds has

no

> markers of a good candidate). We use houston enzymes. Finally, I

will

> be going SCD in a few weeks but with little optimism.

>

> SUPPLEMENTS TRIED:

>

> Calcium, magnesium, zinc, Vitamins C, D, E, K, B (all of them),

CLO,

> fish oil, colostrum, houstons enzymes, epicor, adrenal support,

tons of

> probiotics, candex, GSE, OoO, phosphatidylcholine, evening primrose

> oil, taurine, custom amino blend, s. boulardii, selenium, moly,

CoQ10,

> milk thistle, vanadium, chromium picolinate, transfer factor, heme

> supps for iron, biotin, AKA, virastop, laurcidin, elderberry,

> inflammation control, melatonin, l-carnitine, and probably some

others

> I've forgotten.

>

> We sometimes see gains but they rarely last. Journals and ATEC

prove

> this.

>

> DS is still very much in his own world, non-verbal, non-engaged

with

> his family. He is affectionate with me, sleeps better than before,

and

> has a few splinter skills. I do know this is a long haul for most

of

> us, and I'm not expecting overnight miracles. I would truly

appreciate

> any comments or suggestions people might have on the information

I've

> provided here.

>

> Most gratefully,

>

> Anita

>

> A special message for any anti-biomedical trolls who might be

reading

> this with sanctimonious pleasure: sod off.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

>

> Anita

> I'm so sorry to hear of your struggles. We have had the same

thing

> here with gains/losses so many times and it is extremely

frustrating.

> Every time the words " flu shot " enter into my mind, I practically

fall

> apart inside. My heart and prayers go out to you and your family

for

> faith and endurance.

As always Sheresa, your kindness is most appreciated :-) I have a

hard time being out in public during flu shot season. I'm afraid I

might harm someone. On the good news side, I have dissuaded many,

many people from getting one.

>

> One of the things that we have had some good sustained success with

> lately is a low-slow viral attack, along with continued chelation.

The

> short term high dose viral approach was a complete bust for us

here.

> The yeast is an ongoing nightmare, but she has gained 4 months in

total

> language over a 4 month time frame! Attention and ability to

follow

> directions is better than it has ever been. Prior to this time her

> language gains were MUCH slower and would come and go ALL the

time.

I am VERY glad to hear this Sheresa :-) Such excellent news. Do you

see signs of viral activity (rashes, fevers, etc) or just steady

progress? I am very unwilling to put my son through the difficulties

that came with our last viral protocol. You and I spoke about this

slower approach on another board. I am most certainly leaning toward

this way of doing things. Do you have any idea of your daughter's

methylation cycle? Are you addressing it at all? I ask because I

think it may be one of the missing keys to my son's problems and one

of the reasons he couldn't keep his gains for the viral protocol

> Sorry that I can't be more helpful, but do want to encourage you as

you

> have always been an big help and encouragement for me. Hopefully,

> Andy will offer some guidance.

Knowing you are out there somewhere in cyberworld is in itself a big

help to me Sheresa :-) Also, if you can answer the questions about

your viral protocol, that would be a big help too ;-)

Take care,

Anita