Re: What am I doing wrong?

[Guest guest]

What is your chelation protocol and what other supplements are you giving?

Yeast and viral issues can mask gains with chelation but you should really be

seeing something here. Did you do a hair test? Is he vaccinated? How old is

your son?

With yeast, what kinds of foods are his favorite? Does he eat a lot of sugar

or simple carbs like white flours? Is he on enzymes?

I am not good with the viral stuff, we are just barely beginning that one. I

think I remember hearing that those kids who really react to viral treatment are

the ones with the most issues. Going very slowly with that one may help...

I can relate to the fustration, we have been doing biomed for 4 years now.

Hopefully we can figure out what may help!!! This group is really good at

that!!! One of the things I did recently was ask someone further down the

recover road what supplements they were using. I actually asked for a list!

She was gracious and sent me one. I checked out each and every one to see what

it was and why it was usually used. It helped me to make sure I was on the

right track with our supplements. I found a few I had heard of but hadn't

started yet for various reasons.

Our kids are a sometimes like playing Marco Polo. You get hotter and colder

with each move. Sometimes you get on a good track and other times you want to

scream.

Kim GIll <kim.gill@...> wrote:

I just dont get it. What am I missing? I am thrilled to read others

who are doing so well, those who post and say their kids are

improving. After 18 months of biomed, we are still we were when we

started. I take 20 minutes each morning and night, mixing up

supplements to give our son . And I wonder, what am i doing?

When we started, we were told he was high functioning. He

looked/appeared very NT and we had 3 " big things " we wanted to work on,

which would make him practically indistinguishable from peers. Well,

18 months later, those 3 things still exist, havent gotten

better....except that now we have OCD's, anxiety, and increased sensory

stuff...and extreme ADHD behaviors. Again, what am I missing? We

now have learned that our son is moderate to low functioning. HOW on

earth has our kid gone backwards?

Here are some things I wonder about, and would appreciate any opinion.

First, we have never gotten rid of yeast. I will be asking for

diflucan from our DAN next week. I am convinced that he is a gut kid

and things will get better when yeast is under control. I have tried

EVERY natural antifungal out there...candex, candidase, OoO, numerous

probiotics, etc. Still there. Makes me think that he has TH1/TH2

imbalance.

Chelation has worked somewhat, but we are not seeing " huge gains " with

each round like we used to. We just finished round 8 of DMSA/ALA

combo with no gains what so ever. Again, perhaps yeast is making the

gains?

LDN was wonderful, great gains at first, they stopped though.

And, we started OLE for our anti viral protocol (yes, without diflucan

first), and he has regressed completely. He repeats the same phrase

over and over and over....100 times a day. It is so God da*^

discouraging. I truly dont know how much more I can take?

Any ideas? Why isnt he getting better?

Thanks. Kim

=======================================================

[Guest guest]

Diet. Avoid all sugar, all carbohydrates.

Get Nystatin, not diflucan. We take

3 pills per day for our 50 lb son.

Our diet is this:

Breakfast: eggs, bacon, pear juice.

Lunch: veal patties, broccoli, pear

Dinner: veal, aspargus, squash, onion, water.

Nothing else.

Supplement for calcium and zinc.

I suspect you will see immedate gains.

--- Kim GIll <kim.gill@...> wrote:

> I just dont get it. What am I missing? I am

> thrilled to read others

> who are doing so well, those who post and say their

> kids are

> improving. After 18 months of biomed, we are still

> we were when we

> started. I take 20 minutes each morning and night,

> mixing up

> supplements to give our son . And I wonder,

> what am i doing?

>

> When we started, we were told he was high

> functioning. He

> looked/appeared very NT and we had 3 " big things " we

> wanted to work on,

> which would make him practically indistinguishable

> from peers. Well,

> 18 months later, those 3 things still exist, havent

> gotten

> better....except that now we have OCD's, anxiety,

> and increased sensory

> stuff...and extreme ADHD behaviors. Again, what am

> I missing? We

> now have learned that our son is moderate to low

> functioning. HOW on

> earth has our kid gone backwards?

>

> Here are some things I wonder about, and would

> appreciate any opinion.

>

> First, we have never gotten rid of yeast. I will be

> asking for

> diflucan from our DAN next week. I am convinced

> that he is a gut kid

> and things will get better when yeast is under

> control. I have tried

> EVERY natural antifungal out there...candex,

> candidase, OoO, numerous

> probiotics, etc. Still there. Makes me think

> that he has TH1/TH2

> imbalance.

>

> Chelation has worked somewhat, but we are not seeing

> " huge gains " with

> each round like we used to. We just finished round

> 8 of DMSA/ALA

> combo with no gains what so ever. Again, perhaps

> yeast is making the

> gains?

>

> LDN was wonderful, great gains at first, they

> stopped though.

>

> And, we started OLE for our anti viral protocol

> (yes, without diflucan

> first), and he has regressed completely. He

> repeats the same phrase

> over and over and over....100 times a day. It is so

> God da*^

> discouraging. I truly dont know how much more I

> can take?

>

> Any ideas? Why isnt he getting better?

>

> Thanks. Kim

>

>

>

>

>

>

__________________________________________________

[Guest guest]

>

> Chelation has worked somewhat, but we are not seeing " huge gains " with

> each round like we used to. We just finished round 8 of DMSA/ALA

> combo with no gains what so ever. Again, perhaps yeast is making the

> gains?

Chelating myself and my 2 NT kids. On round 22, ALA, Andy's protocol, every 3

hours, 3

days on/ 4 off.

I've felt significantly worse with a yeast flare. Felt we were back to square

one as if I hadn't

chelated at all. I guessed it was yeast because I was irritable and couldn't

stand to be

touched. I treated with GSE + No Fenol, and kefir, and felt better.

Although I'd say I'm feeling improvements as I chelate, and I'm seeing

improvements in the

kids, it isn't a linear, better-each-round kind of improvement. Overall? Yes,

better.

Round by round, not so much. More like a couple steps forward, one back.

We started off doing DMSA + ALA, then switched to ALA only. We prefer ALA only.

I'll read the rest of thread to see if you posted the dosage of DMSA/ALA and

timing. And

good luck, keep the faith!

in Illinois

[Guest guest]

Hello : I am also in Illinois...Gurnee to be exact, perhaps

we are neighbors?

First, I want to say thanks for responding and that I made a mistake

on my original post. When I said I saw no gains with 8 rounds of

chelation...I meant that I saw no gains with the 8th round of

chelation. We saw immediate gains in the first few rounds, then

stopped and havent seen much since. So I wanted to clarify that

point. I know chelation works becaus I saw the gains originally.

We are dosing 20 mgs of dmsa and 10 mgs of ALA every 3 hours around

the clock for 3 days on/11 days off. This in transdermal form.

Other supplements we are giving include: antioxidants, minerals, vit

A, Vit E, selenium drops, lots of antifungals, houston enzymes for

infractions to the gfcf diet, LDN, and some others I cant recall

right now.

Also, I learned that it is common to see the " valtrex effect " when

using OLE for antiviral protocol, and our regression could be a

combination of Huge yeast and viruses. When yeast wasnt flared up,

we saw gains.

I cant think of anything else, except I feel that time is slipping

away from me and we will never get our son back. He is so darn cute,

I love him so much, but I cant live with him this way. He drives me

crazy.

Let me know if I can add anything else...and thanks!

Kim

>

> >

> > Chelation has worked somewhat, but we are not seeing " huge gains "

with

> > each round like we used to. We just finished round 8 of

DMSA/ALA

> > combo with no gains what so ever. Again, perhaps yeast is making

the

> > gains?

>

>

> Chelating myself and my 2 NT kids. On round 22, ALA, Andy's

protocol, every 3 hours, 3

> days on/ 4 off.

>

> I've felt significantly worse with a yeast flare. Felt we were

back to square one as if I hadn't

> chelated at all. I guessed it was yeast because I was irritable

and couldn't stand to be

> touched. I treated with GSE + No Fenol, and kefir, and felt

better.

>

> Although I'd say I'm feeling improvements as I chelate, and I'm

seeing improvements in the

> kids, it isn't a linear, better-each-round kind of improvement.

Overall? Yes, better.

> Round by round, not so much. More like a couple steps forward, one

back.

>

> We started off doing DMSA + ALA, then switched to ALA only. We

prefer ALA only.

>

> I'll read the rest of thread to see if you posted the dosage of

DMSA/ALA and timing. And

> good luck, keep the faith!

>

> in Illinois

>

[Guest guest]

Hello : I just responded to another who replied to my " help "

message, so I hope I dont confuse things. Chelation protocol is 20

mgs of dmsa/10 mgs of ALA every 3 hours around the clock, 3 days

on/11 days off. I also wanted to clarify my original message...we

didnt see any gains on the 8th round of chelation....I didnt mean to

say we saw nothing for all 8 rounds. Originally, yeast was somewhat

under control, still there...just not rampant. We saw immediate

gains when we added in ALA for 2-3 rounds, it was amazing. I

thought, hey...we will get him recovered afterall!

But, yeast is at an alltime high, and on top of everything else, we

started an antiviral protocol which sent him into an immediate

regression...bigtime. I really didnt think the antiviral was going

to be so rough. We have cut back on the antiviral protocol, but

still see regression. I understand it can last sometime.

We use the usual supps, nothing unusual. Antioxidants, minerals,

liver life, houston enzymes with gfcf diet, LDN, candidase, numerous

antifungals, I just made our 2nd batch of coconut kefir, probiotics,

etc.

Any thoughts would be appreciated. I dont know if this is a diet

thing that suggested...the viral protocol, yeast issues, but I

can say that we are living in hell right now, and I cant take it any

longer. I love our little guy so much, but dont know if I can live

with him like this.

Thanks for any suggestions you may have. God Bless.....Kim

> I just dont get it. What am I missing? I am thrilled to read

others

> who are doing so well, those who post and say their kids are

> improving. After 18 months of biomed, we are still we were when we

> started. I take 20 minutes each morning and night, mixing up

> supplements to give our son . And I wonder, what am i

doing?

>

> When we started, we were told he was high functioning. He

> looked/appeared very NT and we had 3 " big things " we wanted to work

on,

> which would make him practically indistinguishable from peers.

Well,

> 18 months later, those 3 things still exist, havent gotten

> better....except that now we have OCD's, anxiety, and increased

sensory

> stuff...and extreme ADHD behaviors. Again, what am I missing?

We

> now have learned that our son is moderate to low functioning. HOW

on

> earth has our kid gone backwards?

>

> Here are some things I wonder about, and would appreciate any

opinion.

>

> First, we have never gotten rid of yeast. I will be asking for

> diflucan from our DAN next week. I am convinced that he is a gut

kid

> and things will get better when yeast is under control. I have

tried

> EVERY natural antifungal out there...candex, candidase, OoO,

numerous

> probiotics, etc. Still there. Makes me think that he has

TH1/TH2

> imbalance.

>

> Chelation has worked somewhat, but we are not seeing " huge gains "

with

> each round like we used to. We just finished round 8 of DMSA/ALA

> combo with no gains what so ever. Again, perhaps yeast is making

the

> gains?

>

> LDN was wonderful, great gains at first, they stopped though.

>

> And, we started OLE for our anti viral protocol (yes, without

diflucan

> first), and he has regressed completely. He repeats the same

phrase

> over and over and over....100 times a day. It is so God da*^

> discouraging. I truly dont know how much more I can take?

>

> Any ideas? Why isnt he getting better?

>

> Thanks. Kim

>

>

>

>

>

>

>

> =======================================================

>

[Guest guest]

Hi Kim

Don't get discouraged - your son is still very young. We are doing

much the same protocols with out 4 yr old daughter right now.

Chelating (just finished round 7), OLE, supps, enzymes. It does

sound to me like maybe the yeast is masking his chelation gains.

OLE for us creates a lot of yeast and doing the chelation at the same

time I really have to work hard to stay on top of the " gut " . We

struggle with that ourselves. Have you tried using a little GSE

while you are on round? That helps us here, although I try really

hard not to use too much of it.

Also, how long have you been doing the OLE? When we first started

this it did seem to stir up a lot of OCD activity!! But once I

tried to discontinue it for a couple weeks and the OCD went thru the

roof!!! After I started it back (about 6 weeks ago) I saw really

big gains in language, attention, etc. The OCD's are still there but

much much less and the gains are continuing. I think they just have

to work thru some of the viruses to eliminate them and in the process

this results in more viral type behavior. You can also try giving

the OLE with No-Fenol enzymes. This makes it better tolerated for

my little gal, and also helps with yeast issues. Hang in there and

please keep us posted on his progress.

Sheresa

> >

> > >

> > > Chelation has worked somewhat, but we are not seeing " huge

gains "

> with

> > > each round like we used to. We just finished round 8 of

> DMSA/ALA

> > > combo with no gains what so ever. Again, perhaps yeast is

making

> the

> > > gains?

> >

> >

> > Chelating myself and my 2 NT kids. On round 22, ALA, Andy's

> protocol, every 3 hours, 3

> > days on/ 4 off.

> >

> > I've felt significantly worse with a yeast flare. Felt we were

> back to square one as if I hadn't

> > chelated at all. I guessed it was yeast because I was irritable

> and couldn't stand to be

> > touched. I treated with GSE + No Fenol, and kefir, and felt

> better.

> >

> > Although I'd say I'm feeling improvements as I chelate, and I'm

> seeing improvements in the

> > kids, it isn't a linear, better-each-round kind of improvement.

> Overall? Yes, better.

> > Round by round, not so much. More like a couple steps forward,

one

> back.

> >

> > We started off doing DMSA + ALA, then switched to ALA only. We

> prefer ALA only.

> >

> > I'll read the rest of thread to see if you posted the dosage of

> DMSA/ALA and timing. And

> > good luck, keep the faith!

> >

> > in Illinois

> >

>

[Guest guest]

Kim,

We are in a similar situation, and I am still holding out hope that

the theory of yeast masking the gains is our main problem. But it is

getting harder to justify as our frustration grows.

My son is 3.10 yrs. We began biomed at 18 mos. old with gfcf, 20

mos. with supplements, 26 mos. with valtrex, 28 mos. with chelation

and MB12, 38 mos. LDN... and so on...

Last Fall we were on a great roll after finally switching his

chelation protocol to correct dosing (td dmps every 8 hrs 3 on 4

off). At Christmas break we decided to try 2 rounds of oral DMSA/ALA

and we saw a yeast regression like no other. In the interim we

moved. We have yet to regain the skills he had before the Holidays.

He lost all 5 words he had, stims a ton more (it had virtually

disappeared for 9 mos. previously), and his receptive was gaining

leaps and bounds. Now we are fighting to get back a years worth of

gains.

It seems that age 4 will arrive with a deja vu of age 3. I had such

high hopes for this year, and I feel like I have lost him " twice " .

Once to his original dx. at 20 mos. old, and now again.

We are 3 wks into SCD (our 4th attempt at that diet, but we finally

conquered some texture/feeding issues so this trial should be the

charm!), and even the few gains we have seen on it are eerily not as

dramatic as the last few times we tried the diet.

I know we have to hang in there, but every night before I go to

sleep the last thing I think of is, " what am I doing wrong? "

>

> I just dont get it. What am I missing? I am thrilled to read

others

> who are doing so well, those who post and say their kids are

> improving. After 18 months of biomed, we are still we were when

we

> started. I take 20 minutes each morning and night, mixing up

> supplements to give our son . And I wonder, what am i

doing?

>

> When we started, we were told he was high functioning. He

> looked/appeared very NT and we had 3 " big things " we wanted to

work on,

> which would make him practically indistinguishable from peers.

Well,

> 18 months later, those 3 things still exist, havent gotten

> better....except that now we have OCD's, anxiety, and increased

sensory

> stuff...and extreme ADHD behaviors. Again, what am I missing?

We

> now have learned that our son is moderate to low functioning.

HOW on

> earth has our kid gone backwards?

>

> Here are some things I wonder about, and would appreciate any

opinion.

>

> First, we have never gotten rid of yeast. I will be asking for

> diflucan from our DAN next week. I am convinced that he is a gut

kid

> and things will get better when yeast is under control. I have

tried

> EVERY natural antifungal out there...candex, candidase, OoO,

numerous

> probiotics, etc. Still there. Makes me think that he has

TH1/TH2

> imbalance.

>

> Chelation has worked somewhat, but we are not seeing " huge gains "

with

> each round like we used to. We just finished round 8 of DMSA/ALA

> combo with no gains what so ever. Again, perhaps yeast is making

the

> gains?

>

> LDN was wonderful, great gains at first, they stopped though.

>

> And, we started OLE for our anti viral protocol (yes, without

diflucan

> first), and he has regressed completely. He repeats the same

phrase

> over and over and over....100 times a day. It is so God da*^

> discouraging. I truly dont know how much more I can take?

>

> Any ideas? Why isnt he getting better?

>

> Thanks. Kim

>

[Guest guest]

I haven't been reading all the posts on this but would suggest valtrex -- viral

protocal. Also, difluzan is also helpful for fungal issues.

Finally, I would at least test for high testosterone.

McDermott <jtmcde@...> wrote:

Kim,

We are in a similar situation, and I am still holding out hope that

the theory of yeast masking the gains is our main problem. But it is

getting harder to justify as our frustration grows.

My son is 3.10 yrs. We began biomed at 18 mos. old with gfcf, 20

mos. with supplements, 26 mos. with valtrex, 28 mos. with chelation

and MB12, 38 mos. LDN... and so on...

Last Fall we were on a great roll after finally switching his

chelation protocol to correct dosing (td dmps every 8 hrs 3 on 4

off). At Christmas break we decided to try 2 rounds of oral DMSA/ALA

and we saw a yeast regression like no other. In the interim we

moved. We have yet to regain the skills he had before the Holidays.

He lost all 5 words he had, stims a ton more (it had virtually

disappeared for 9 mos. previously), and his receptive was gaining

leaps and bounds. Now we are fighting to get back a years worth of

gains.

It seems that age 4 will arrive with a deja vu of age 3. I had such

high hopes for this year, and I feel like I have lost him " twice " .

Once to his original dx. at 20 mos. old, and now again.

We are 3 wks into SCD (our 4th attempt at that diet, but we finally

conquered some texture/feeding issues so this trial should be the

charm!), and even the few gains we have seen on it are eerily not as

dramatic as the last few times we tried the diet.

I know we have to hang in there, but every night before I go to

sleep the last thing I think of is, " what am I doing wrong? "

>

> I just dont get it. What am I missing? I am thrilled to read

others

> who are doing so well, those who post and say their kids are

> improving. After 18 months of biomed, we are still we were when

we

> started. I take 20 minutes each morning and night, mixing up

> supplements to give our son . And I wonder, what am i

doing?

>

> When we started, we were told he was high functioning. He

> looked/appeared very NT and we had 3 " big things " we wanted to

work on,

> which would make him practically indistinguishable from peers.

Well,

> 18 months later, those 3 things still exist, havent gotten

> better....except that now we have OCD's, anxiety, and increased

sensory

> stuff...and extreme ADHD behaviors. Again, what am I missing?

We

> now have learned that our son is moderate to low functioning.

HOW on

> earth has our kid gone backwards?

>

> Here are some things I wonder about, and would appreciate any

opinion.

>

> First, we have never gotten rid of yeast. I will be asking for

> diflucan from our DAN next week. I am convinced that he is a gut

kid

> and things will get better when yeast is under control. I have

tried

> EVERY natural antifungal out there...candex, candidase, OoO,

numerous

> probiotics, etc. Still there. Makes me think that he has

TH1/TH2

> imbalance.

>

> Chelation has worked somewhat, but we are not seeing " huge gains "

with

> each round like we used to. We just finished round 8 of DMSA/ALA

> combo with no gains what so ever. Again, perhaps yeast is making

the

> gains?

>

> LDN was wonderful, great gains at first, they stopped though.

>

> And, we started OLE for our anti viral protocol (yes, without

diflucan

> first), and he has regressed completely. He repeats the same

phrase

> over and over and over....100 times a day. It is so God da*^

> discouraging. I truly dont know how much more I can take?

>

> Any ideas? Why isnt he getting better?

>

> Thanks. Kim

>

=======================================================

[Guest guest]

> Also, I learned that it is common to see the " valtrex effect " when

> using OLE for antiviral protocol, and our regression could be a

> combination of Huge yeast and viruses. When yeast wasnt flared up,

> we saw gains.

>

> I cant think of anything else, except I feel that time is slipping

> away from me and we will never get our son back. He is so darn cute,

> I love him so much, but I cant live with him this way. He drives me

> crazy.

I think that's just it -- yeast + viruses. The yeast n got from

antivirals, all of them but OLE and Lauricidin in particular, was *way

worse than the yeast from chelation, and that was pretty awful as it

was. Also, that feeling of " he's driving me crazy " is a tip-off for me

that yeast is the problem. For whatever reason other problems trigger

different emotional responses.

Describe again what you've tried for yeast, and for how long?

Nell

[Guest guest]

> I know we have to hang in there, but every night before I go to

> sleep the last thing I think of is, " what am I doing wrong? "

>

Oh tracy, you and Kim are breaking my heart. What's your yeast

protocol like? I'm thinking both of you need to try ramping it up.

Also want to say that those early rounds for n were nightmarish

thanks to yeast. I'd see improvement on-round, but by the third day he

was glowering and angry, then days of meltdowns. By treating the yeast

*hard I could get him semi-OK (not falling apart but not great) by the

time the next round came. I ended up skipping a lot of weeks back then

to whack the yeast back.

Anyway, I suggest that neither of you is doing anything wrong, you

just have to get through enough rounds and be aggressive enough with

antifungals. I say this because of the positive response you both got,

right from the start.

Nell

[Guest guest]

Dear ,

I should be in bed, but I couldn't when I saw your email. I had to

respond. We are to recover for the great gains our son did on his

chelation protocol last summer. We lost our gains to several mistakes

in one biomedical intervention (one of them was the use of Valtrex). I

felt particularly guilty of the regression my son went through. As

you, I felt that I have lost him twice. I have learned from this

experience though:

1. I do not rush for the very last thing that someone has used to

recover their kids. There are a great number of kids who have

recovered, but it's amazing how diverse the treatments/paths they've

followed are. I am much better now at observing my child, isolating

and working on a single issue at one time. When something doesn't

work, I revisit that same issue from another perspective (the thinking

outside the box type of thing). MB12 may serve as an example. After a

year and a half of MB12 it was clear to me that it wasn't working. We

stopped it. A few months later, we are back thinking of MB12 and the

reasons why he didn't respond (i.e., he doesn't need it; his zinc is

too low for b12 to work; we may need other forms of b12 as well, etc).

2. If we did it once, we can do it again. This is my husband's saying.

I don't look at it anymore as a matter of losing. Now, it is more like

" you have seen his potential once, it is just a matter of time and it

will resurface " Chelation proved to be the most effective therapy ever

for us. We have worked out some of the problems we had with chelation

and we continue chelating nowdays. Some of our problems have been a

matter of finetuning supplement dosing, and already existing

protocols. I can't emphasize this enough.

3. I allow myself my misery days. There are days that it is just too

difficult to be the best, happy, wonderful mom/therapy/cook/doctor. I

hope for the next day to be better.

4. I take time for myself and I feel no guilt whatsoever (well, just a

little bit). Yet, I take it. Everyday.

5. I am constantly searching for children's stories that uplift my

spirit. I watch videos of parents talking about their kids' recovery.

Then, I close my eyes and see my child doing tones of great things. It

is so absolutely wonderful!

6. Expectations. My son needs a mom who truly and honestly believes he

can achieve his best. Our expections reflect on our behaviour, actions

etc towards them. I have learned this from my husband. You should see

him talk about his son!

Take care of yourself,

> >

> > I just dont get it. What am I missing? I am thrilled to read

> others

> > who are doing so well, those who post and say their kids are

> > improving. After 18 months of biomed, we are still we were when

> we

> > started. I take 20 minutes each morning and night, mixing up

> > supplements to give our son . And I wonder, what am i

> doing?

> >

> > When we started, we were told he was high functioning. He

> > looked/appeared very NT and we had 3 " big things " we wanted to

> work on,

> > which would make him practically indistinguishable from peers.

> Well,

> > 18 months later, those 3 things still exist, havent gotten

> > better....except that now we have OCD's, anxiety, and increased

> sensory

> > stuff...and extreme ADHD behaviors. Again, what am I missing?

> We

> > now have learned that our son is moderate to low functioning.

> HOW on

> > earth has our kid gone backwards?

> >

> > Here are some things I wonder about, and would appreciate any

> opinion.

> >

> > First, we have never gotten rid of yeast. I will be asking for

> > diflucan from our DAN next week. I am convinced that he is a gut

> kid

> > and things will get better when yeast is under control. I have

> tried

> > EVERY natural antifungal out there...candex, candidase, OoO,

> numerous

> > probiotics, etc. Still there. Makes me think that he has

> TH1/TH2

> > imbalance.

> >

> > Chelation has worked somewhat, but we are not seeing " huge gains "

> with

> > each round like we used to. We just finished round 8 of DMSA/ALA

> > combo with no gains what so ever. Again, perhaps yeast is making

> the

> > gains?

> >

> > LDN was wonderful, great gains at first, they stopped though.

> >

> > And, we started OLE for our anti viral protocol (yes, without

> diflucan

> > first), and he has regressed completely. He repeats the same

> phrase

> > over and over and over....100 times a day. It is so God da*^

> > discouraging. I truly dont know how much more I can take?

> >

> > Any ideas? Why isnt he getting better?

> >

> > Thanks. Kim

> >

>

[Guest guest]

Thank you for your kind encouragement. I am actually 99%

upbeat on trudging along following the exact guidelines you write

about, but after this last regression lasting soooo long (and

coupled with a new excellent ABA program!) it is disheartening at

best that we are due a stroke of fairy dust, lol!

Valtrex is not a possibility for his regression, it has been the

single most important intervention we have done. We are researching

PANDAS.... highly likely. Pretty sad that I am actually praying that

it comes out positive! At least it would explain the year's

inconsistencies. I had a child at Christmas that looked so great.

At best, developmentally delayed with most of the autism gone. Now,

I have both back in full force. We will keep trying, slowly

disecting his puzzle. I believe we will find it. Just not sure I was

up for such a fight after the glimpse of recovery we saw.

-- In , " Park " <nospam@...>

wrote:

>

> Dear ,

>

> I should be in bed, but I couldn't when I saw your email. I had to

> respond. We are to recover for the great gains our son did on his

> chelation protocol last summer. We lost our gains to several

mistakes

> in one biomedical intervention (one of them was the use of

Valtrex). I

> felt particularly guilty of the regression my son went through. As

> you, I felt that I have lost him twice. I have learned from this

> experience though:

> 1. I do not rush for the very last thing that someone has used to

> recover their kids. There are a great number of kids who have

> recovered, but it's amazing how diverse the treatments/paths

they've

> followed are. I am much better now at observing my child, isolating

> and working on a single issue at one time. When something doesn't

> work, I revisit that same issue from another perspective (the

thinking

> outside the box type of thing). MB12 may serve as an example.

After a

> year and a half of MB12 it was clear to me that it wasn't working.

We

> stopped it. A few months later, we are back thinking of MB12 and

the

> reasons why he didn't respond (i.e., he doesn't need it; his zinc

is

> too low for b12 to work; we may need other forms of b12 as well,

etc).

> 2. If we did it once, we can do it again. This is my husband's

saying.

> I don't look at it anymore as a matter of losing. Now, it is more

like

> " you have seen his potential once, it is just a matter of time and

it

> will resurface " Chelation proved to be the most effective therapy

ever

> for us. We have worked out some of the problems we had with

chelation

> and we continue chelating nowdays. Some of our problems have been a

> matter of finetuning supplement dosing, and already existing

> protocols. I can't emphasize this enough.

> 3. I allow myself my misery days. There are days that it is just

too

> difficult to be the best, happy, wonderful

mom/therapy/cook/doctor. I

> hope for the next day to be better.

> 4. I take time for myself and I feel no guilt whatsoever (well,

just a

> little bit). Yet, I take it. Everyday.

> 5. I am constantly searching for children's stories that uplift my

> spirit. I watch videos of parents talking about their kids'

recovery.

> Then, I close my eyes and see my child doing tones of great

things. It

> is so absolutely wonderful!

> 6. Expectations. My son needs a mom who truly and honestly

believes he

> can achieve his best. Our expections reflect on our behaviour,

actions

> etc towards them. I have learned this from my husband. You should

see

> him talk about his son!

>

> Take care of yourself,

>

>

>

>

>

> > >

> > > I just dont get it. What am I missing? I am thrilled to read

> > others

> > > who are doing so well, those who post and say their kids are

> > > improving. After 18 months of biomed, we are still we were

when

> > we

> > > started. I take 20 minutes each morning and night, mixing up

> > > supplements to give our son . And I wonder, what am i

> > doing?

> > >

> > > When we started, we were told he was high functioning. He

> > > looked/appeared very NT and we had 3 " big things " we wanted to

> > work on,

> > > which would make him practically indistinguishable from

peers.

> > Well,

> > > 18 months later, those 3 things still exist, havent gotten

> > > better....except that now we have OCD's, anxiety, and

increased

> > sensory

> > > stuff...and extreme ADHD behaviors. Again, what am I

missing?

> > We

> > > now have learned that our son is moderate to low

functioning.

> > HOW on

> > > earth has our kid gone backwards?

> > >

> > > Here are some things I wonder about, and would appreciate any

> > opinion.

> > >

> > > First, we have never gotten rid of yeast. I will be asking

for

> > > diflucan from our DAN next week. I am convinced that he is a

gut

> > kid

> > > and things will get better when yeast is under control. I

have

> > tried

> > > EVERY natural antifungal out there...candex, candidase, OoO,

> > numerous

> > > probiotics, etc. Still there. Makes me think that he has

> > TH1/TH2

> > > imbalance.

> > >

> > > Chelation has worked somewhat, but we are not seeing " huge

gains "

> > with

> > > each round like we used to. We just finished round 8 of

DMSA/ALA

> > > combo with no gains what so ever. Again, perhaps yeast is

making

> > the

> > > gains?

> > >

> > > LDN was wonderful, great gains at first, they stopped though.

> > >

> > > And, we started OLE for our anti viral protocol (yes, without

> > diflucan

> > > first), and he has regressed completely. He repeats the same

> > phrase

> > > over and over and over....100 times a day. It is so God da*^

> > > discouraging. I truly dont know how much more I can take?

> > >

> > > Any ideas? Why isnt he getting better?

> > >

> > > Thanks. Kim

> > >

> >

>

[Guest guest]

>

> Hello : I am also in Illinois...Gurnee to be exact, perhaps

> we are neighbors?

>

Oh, super close. We're in Waukegan. Cooler near the lake!

I was relieved to read that you've already seen gains. Rest assured, even if

yeast and/or

viruses are making your life tough, the chelation is getting the metals out.

What's the mantra? It's a marathon, not a sprint?

Hang in there,

in Illinois

[Guest guest]

>

> I know we have to hang in there, but every night before I go to

> sleep the last thing I think of is, " what am I doing wrong? "

>

>

, how long have you used ALA? In our experience (one adult and 2 NT kids),

ALA felt

better than DMSA + ALA (I know this is not everyone's experience). My

perception is I'm

seeing more of a difference in myself since adding ALA, although we are also

further along

in # of rounds.

in Illinois

[Guest guest]

Sometimes you go through plateaus for a while.

Barb

[ ] Re: What am I doing wrong?

>

> Chelation has worked somewhat, but we are not seeing " huge gains " with

> each round like we used to. We just finished round 8 of DMSA/ALA

> combo with no gains what so ever. Again, perhaps yeast is making the

> gains?

Chelating myself and my 2 NT kids. On round 22, ALA, Andy's protocol, every

3 hours, 3

days on/ 4 off.

I've felt significantly worse with a yeast flare. Felt we were back to

square one as if I hadn't

chelated at all. I guessed it was yeast because I was irritable and

couldn't stand to be

touched. I treated with GSE + No Fenol, and kefir, and felt better.

Although I'd say I'm feeling improvements as I chelate, and I'm seeing

improvements in the

kids, it isn't a linear, better-each-round kind of improvement. Overall?

Yes, better.

Round by round, not so much. More like a couple steps forward, one back.

We started off doing DMSA + ALA, then switched to ALA only. We prefer ALA

only.

I'll read the rest of thread to see if you posted the dosage of DMSA/ALA and

timing. And

good luck, keep the faith!

in Illinois

=======================================================

[Guest guest]

I would like to second those who have recommended you re-examine his diet. I

am becomming a big believer in SCD. I know that some parents avoid diets

because they feel that their kids lives are limited enough as it is, but

believe me the pain that gut trouble brings is far more limiting than not

eating candy bars. If my son had persistant yeast, I would put him on SCD

tomerrow.

In our family we have several versions of gut problems: IBS, autoimmunity,

colitis and autism with gut involvement. I have autoimmune thryoid disease.

It's rather hard to explain how gut pain feels. It is both vague and piercing.

Yeast hurts, it isn't just something in there, it causes pain. All gut pain

wears one's patience thin and makes us irritable and cranky. I can only

imagine how terrible it must be to have this awful pain and then have

difficulty telling someone else that it is happening. Addresssing that pain

should really help your son to feel better. I noticed a big change in my own

ability to concentrate, relax and enjoy my life. Our yeast issues were

addressed within the first six weeks.

Kim GIll <kim.gill@...> wrote: I just dont get it. What am I

missing? I am thrilled to read others

who are doing so well, those who post and say their kids are

improving. After 18 months of biomed, we are still we were when we

started. I take 20 minutes each morning and night, mixing up

supplements to give our son . And I wonder, what am i doing?

When we started, we were told he was high functioning. He

looked/appeared very NT and we had 3 " big things " we wanted to work on,

which would make him practically indistinguishable from peers. Well,

18 months later, those 3 things still exist, havent gotten

better....except that now we have OCD's, anxiety, and increased sensory

stuff...and extreme ADHD behaviors. Again, what am I missing? We

now have learned that our son is moderate to low functioning. HOW on

earth has our kid gone backwards?

Here are some things I wonder about, and would appreciate any opinion.

First, we have never gotten rid of yeast. I will be asking for

diflucan from our DAN next week. I am convinced that he is a gut kid

and things will get better when yeast is under control. I have tried

EVERY natural antifungal out there...candex, candidase, OoO, numerous

probiotics, etc. Still there. Makes me think that he has TH1/TH2

imbalance.

Chelation has worked somewhat, but we are not seeing " huge gains " with

each round like we used to. We just finished round 8 of DMSA/ALA

combo with no gains what so ever. Again, perhaps yeast is making the

gains?

LDN was wonderful, great gains at first, they stopped though.

And, we started OLE for our anti viral protocol (yes, without diflucan

first), and he has regressed completely. He repeats the same phrase

over and over and over....100 times a day. It is so God da*^

discouraging. I truly dont know how much more I can take?

Any ideas? Why isnt he getting better?

Thanks. Kim

=======================================================

[Guest guest]

Do an overnight eeg. Do what ever it takes to rule out seizures

while he is sleeping. Any time a child goes up and down it is

seizures? My son was great at three and I have chelated for 3

years, Valtrex, yeast treatments, diet, enzymes, NAET, cranial

sacrial, specific carbohydrate diet, high dose probiotics, vitamin A

therapy, IVIG, lauricidin,GSE,LDN, verbal bx, speech, ot, pt,

homeopathy, and maybe more. I am also taking my cerification to be

a bx analyst in August. I do not get alot of time on the board but

when my son was 4,5 and6 I was on several times a day.

We just discovered Jack has been having seizures during sleep and

has been since he was 3. Jack's seizures affect his gait and this

has been going on since he was three. AT 9 with the start of

Lamictal we are seeing an awaking for our son. Do the overnight

eeg. It is said that 40% of our kids are having some type of seizure

activity.

nne

I just dont get it. What am

I missing? I am thrilled to read others

> who are doing so well, those who post and say their kids are

> improving. After 18 months of biomed, we are still we were when

we

> started. I take 20 minutes each morning and night, mixing up

> supplements to give our son . And I wonder, what am i

doing?

>

> When we started, we were told he was high functioning. He

> looked/appeared very NT and we had 3 " big things " we wanted to

work on,

> which would make him practically indistinguishable from peers.

Well,

> 18 months later, those 3 things still exist, havent gotten

> better....except that now we have OCD's, anxiety, and increased

sensory

> stuff...and extreme ADHD behaviors. Again, what am I

missing? We

> now have learned that our son is moderate to low functioning.

HOW on

> earth has our kid gone backwards?

>

> Here are some things I wonder about, and would appreciate any

opinion.

>

> First, we have never gotten rid of yeast. I will be asking for

> diflucan from our DAN next week. I am convinced that he is a

gut kid

> and things will get better when yeast is under control. I have

tried

> EVERY natural antifungal out there...candex, candidase, OoO,

numerous

> probiotics, etc. Still there. Makes me think that he has

TH1/TH2

> imbalance.

>

> Chelation has worked somewhat, but we are not seeing " huge

gains " with

> each round like we used to. We just finished round 8 of

DMSA/ALA

> combo with no gains what so ever. Again, perhaps yeast is

making the

> gains?

>

> LDN was wonderful, great gains at first, they stopped though.

>

> And, we started OLE for our anti viral protocol (yes, without

diflucan

> first), and he has regressed completely. He repeats the same

phrase

> over and over and over....100 times a day. It is so God da*^

> discouraging. I truly dont know how much more I can take?

>

> Any ideas? Why isnt he getting better?

>

> Thanks. Kim

>

>

>

>

>

>

>

> =======================================================

>

[Guest guest]

> Chelation has worked somewhat, but we are not seeing " huge gains " with

> each round like we used to. We just finished round 8 of DMSA/ALA

> combo with no gains what so ever. Again, perhaps yeast is making the

> gains?

It can be yeast, it can be supplements. For my son, lack of specific

supplements that his body needed, would mask improvements from other

areas. And also, when he no longer needs a supplement, he will regress.

About a year ago, I thought my son was basically recovered, and then I

watched a cold virus move right into his brain. It set him back to

the very beginning of biomedical, it looked like I had done nothing at

all. At least I knew what caused it, otherwise it would have been

VERY discouraging.

> And, we started OLE for our anti viral protocol (yes, without diflucan

> first), and he has regressed completely. He repeats the same phrase

> over and over and over....100 times a day. It is so God da*^

> discouraging. I truly dont know how much more I can take?

For my son, OLE alone was good, but the combination of OLE and

Virastop was much better for him.

And for me, same thing. I can take OLE and many times it will pull

out a flu virus, causing me to have flu symptoms that might make it

impossible for me to function. I take Virastop and the symptoms are

under control.

Dana

[Guest guest]

>

> I started my son on Mito cocktail. At first his bumpy skin stated

> disappearing as well as his cracked lips. His stools also became

> better. After a while the bumps have come back. I thought it may be an

> underlying yeast issue so we started GSE, OLE, Biotin and Candex, This

> gave my son about a week of good stools with some black flecks. He has

> been on this for 3 weeks and the bumps are still there and now his

> stools have become mustard colours very smelly and soft.

On this page is what my #3 needed for chicken skin KP

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

> I feel like I should be a bit more aggressive with the treatments. I

> just don't understand why the improvements disappear after a while.

You may be addressing part of the problem, but not all of it.

Dana