Re: Lack of progress, ANDY your comments please?~ Abid

[Guest guest]

Abid can you point me to the information Yasko has on MB12 responders?

Your post and information were fantastic. I totally agree that it's critical

to find out everything before you forge ahead with a treatment plan.

Amy

Abid Khan <a_bit_solutions@...> wrote:

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]

I don't have Yasko information on MB12 responders. I recently ordered genetic

testing & analysis from Amy Yasko. Answers are probably somewhere on her

website:

www.autismanswer.com

Some folks here probably know lots more than I do regarding Yasko. She

believes in MB12 and detox pathways. Genetics make certain people

non-responders so she detoxes using a different pathway. She tells folks to

take Folapro and perhaps other things. I am still learning.

Another source is Yasko's book:

The Puzzle of Autism: Putting It All Together

Good luck to you.

Amethyst Mueller <amethyst_mueller@...> wrote:

Abid can you point me to the information Yasko has on MB12 responders?

Your post and information were fantastic. I totally agree that it's critical to

find out everything before you forge ahead with a treatment plan.

Amy

Abid Khan <a_bit_solutions@...> wrote:

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.

__________________________________________________