Re: Dana & others Rethinking our protocal

[Guest guest]

Melinda,

Please find my comments interspersed.

>

> We have been working on viruses since last January. It took us 8

> months of Vit C 4 x a day until we reached loose stools. Towards

the

> end she was getting close to 1000mg at each dosing. We started

using

> Virastop last July. My daughter could only tolerate sprinkles or

the

> yeast would get too bad. We have worked up two 1/2 capsule twice a

> day and more recently I have attempted to move one of the doses to

a

> full capsule. We did not have muscle tone issues until we started

> viral treatment.

Many parents of kids who are thought to be viral have muscle tone

issues. This could be a sign of the viruses becoming more active in

response to your treatments.

We are chelating using oral DMPS and ALA. I try to

> be extra cautious with increasing the ViraStop when are on round as

> to maintain regular bowel movements. She shows marked improvement

> when given ALA which I feel is due it being an antioxidant.

That is good news.

>

> Our insurance paid for a Quantitative IgG Ab titer for

> CMV, EBV, HHV6, HSV 1 & 2, Hep B surface Ab, Measles, Mumps, Rubella,

> Varicella and Polio

>

> I have posted these results on other message boards without

response.

> Is interpreting viral testing controversial? If so why?

I don't think it is so much controversial as not well understood. It

really seems to me that many docs will order tests without really

knowing what to do with results. Viral panels are one of those. I

for one don't understand the implications of the numbers,

particularly the difference between viral titres and actual viral

problems are kids might have. Sorry.

>

> Do the numbers mean anything besides that she has a viral load?

>

> The high ones are as follows:

> Rubeola Ab, IgG, EIA 5.20 H

> index 0.00-0.90

> Negative < 0.91

> Equivocal 0.91-1.09

> Positive > 1.09

>

> Mumps Abs, IgG 3.27H

> index 0.00-0.90

> Negative < 0.91

> Equivocal 0.91-1.09

> Positive > 1.09

>

> CMV Ab, IgG (Cytomegalovirus) 12.1 H

> index 0.00-0.90

> Negative < 0.91

> Equivocal 0.91-1.09

> Positive > 1.09

>

> HHV-6, IgG Antibodies, Quant 1:320 H

> Negative < 1:20

> Equivocal 1:20-1:80

> Positive >=1:160

>

> Does this test indicate that I should do something differently?

>

> I am struggling with the idea of Valtrex. Children with Starving

> Brains page 181 says Valtrex/Acyclovir is ineffective against most

> cytomegalovirus strains and has various levels of effectiveness

> against some strains of EBV and HHV6

If you believe that your child is struggling only with these viruses,

then valtrex may really not be for her. However, it has been shown

that valtrex can be effective for some kids who didn't show titres.

It is really difficult to say what is going to work for whom. My own

personal feeling is that the naturals are as effective against the

viruses. I am also leaning towards the low slow approach that you

seem to be taking.

>

> The following is a list of supplements my 5 yr. old 38 pound

daughter

> is on.

>

> 250 mg Vit C four times daily - (Anymore than this it appears

causes

> loose stools- Hard to tell- we fight yeat a lot and have low muscle

> tone)

> Kirkman Multi-Vitamin and Mineral - Divided up 4x daily

> Vitamin E 200 IU - in am

> Natural Calm - Mag Citrate -1/2 teaspoon before bed

> L-Carnatine- 2 (250mg Capsules) in am and 2 Capsules before bed

> CoQ10 30mg in am

> Creatine 250 mg in am

> Lysine 250 mg twice daily

> Kirkman Cod Liver Oil - 1/2 teaspoon twice daily

> Zyme Prime- one with Cod Liver Oil

> Biotin - 4mg twice daily

> ViraStop -1/2 Capsule twice daily

VS is best taken three times a day if possible.

> Candidase- 1/2 Capsule four times daily

> Oil of Oregano- 5 drops twice daily

> Probiotics- 1 Culturelle twice daily

You may want to consider adding more strains. This would help with

the immune system. Note that OLE shouldn't be used with soil-based

strains.

> Del-Immune- 1/2 Capsule twice daily

> Milk Thiste- 1 Capsule daily

> Colostrum- 1/2 teaspoon twice daily

You may want to consider some more immune boosters. We have had very

good luck with epicor but there are others listed in the viral file.

>

> Oral DMPS - 5mg every 6 hours for seven days on seven days off

> ALA - 5 mg every three hours for three days every two weeks

>

> We see improvement come and go. I would like to see more consistent

> eye-contact and cogntive gains. I believe those issues are directly

> related to her viral issues.

>

> I am unable to find in my notes what amino acids you should not use

> when using OLE

My notes show these: glycine, lysine, histadine, and cysteine which

would include n-acetyl-cysteine.

Best wishes,

Anita

>

> Thanks, Melinda

>

[Guest guest]

>>We did not have muscle tone issues until we started

> viral treatment.

Try adding or increasing carnitine. Giving it with folic acid and

mB12 as well as aminos can be VERY beneficial [my son is going thru

this right now]. Since you are already giving some of these, try

increasing the folic and mB12.

>>She shows marked improvement

> when given ALA which I feel is due it being an antioxidant.

I chelated all four of my kids with ALA. It was very helpful as an

antioxidant and chelator, as well as working to demineralize [my kids

had high/toxic levels of most minerals].

> Our insurance paid for a Quantitative IgG Ab titer for

> CMV, EBV, HHV6, HSV 1 & 2, Hep B surface Ab, Measles, Mumps, Rubella,

> Varicella and Polio

>

> I have posted these results on other message boards without response.

> Is interpreting viral testing controversial? If so why?

I think it is because not as many people know how to interpret it.

More people know how to interpret a metal test.

> The high ones are as follows:

> Rubeola Ab, IgG, EIA 5.20 H

This is measles. Consider high dose vitamin A protocol

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

> Mumps Abs, IgG 3.27H

> CMV Ab, IgG (Cytomegalovirus) 12.1 H

> HHV-6, IgG Antibodies, Quant 1:320 H

CMV and HHV are common. And so far as I know, will respond to vitamin

C, OLE, and Virastop.

> I am unable to find in my notes what amino acids you should not use

> when using OLE

Glycine, lysine, histadine, and cysteine (including n-acetyl-l-cysteine)

You can use them on the same days, but not within 2 hours of each other.

Dana

[Guest guest]

Anita & Dana, Thanks!

> >>We did not have muscle tone issues until we started

> > viral treatment.

> Try adding or increasing carnitine. Giving it with folic acid and

> mB12 as well as aminos can be VERY beneficial [my son is going thru

> this right now]. Since you are already giving some of these, try

> increasing the folic and mB12.

>

I am going to try adding these in.

What amount of folic acid and mB12 would you start out with?

I do have 3000mcg B-12 as methylcobalamin sublingual lozenges on

hand. I haven't added mB12 in the past for fear of increased yeast. I

simply do not know what else to give to control yeast except more of

what we are giving.

Can folic acid increase yeast?

> > The high ones are as follows:

> > Rubeola Ab, IgG, EIA 5.20 H

>

>

> This is measles. Consider high dose vitamin A protocol

>

> http://www.danasview.net/vitamina.htm

I had no idea that the result was measles. Thank you so much! I

suspected measles due to signs of vit a deficiency and those signs

went away when we started using CLO. I can't tell you how many times

I have considered this protocal but was a little nervous about going

it alone without a doctor. We due consult but most of our budget goes

to supplements.

> > Mumps Abs, IgG 3.27H

> > CMV Ab, IgG (Cytomegalovirus) 12.1 H

> > HHV-6, IgG Antibodies, Quant 1:320 H

>

>

> CMV and HHV are common. And so far as I know, will respond to

vitamin

> C, OLE, and Virastop.

>

Do we know what might respond to mumps?

> > I am unable to find in my notes what amino acids you should not

use

> > when you use OlE

>

> Glycine, lysine, histadine, and cysteine (including n-acetyl-l-

cysteine)

>

> You can use them on the same days, but not within 2 hours of each

other.

>

> Dana

>

I had no idea you could OLE and these amino's on the same day. I had

stopped using OLE altogether because I wanted to use lysine.

Can you use ViraStop and probiotics together? I have been using

Virastop with oil of oregano, biotion and candidase to control the

yeast. If I add in Virastop a third time a day I am not sure how to

do this. We give probiotics upon waking and at bedtime.

Please know your time and info. is truely appreciated. Our family is

very grateful. Melinda

[Guest guest]

>

> I haven't added mB12 in the past for fear of increased yeast. I

> simply do not know what else to give to control yeast except more of

> what we are giving.

> Can folic acid increase yeast?

>

Melinda,

A big part of controlling the yeast is replacing the good bacteria. If

you are only using culturelle, then your yeast protocol will be

spinning its wheels. Culturelle is a single strain that is excellent

against the bad bacteria, but to repopulate the gut you should be using

a number of the multistrains. Generally at pretty high doses. My son

is about your daughter's weight and I generally give him close to a

trillion CFU's a day now. It's expensive (!!) but working.

I also wanted to comment on the titres. I really don't understand

this stuff well, but I'm not sure high titres really is indicitive of

viral load. I think it can also mean that your daughter's immune

system is simply running on overdrive. It may very well be

imbalanced. Andy has some explanation of this in the viral file. If

Andy is right, then I think the approach that needs to be taken along

with dealing with viruses is dealing with the immune system. This

might be particularly important if your child has an overactive immune

system because we want to address things before the immune system burns

itself out.

I went to a conference recently where Dr. Deth talked in great detail

about this stuff. It all finally made sense to me. His work convinced

me that for my son, who has big malabsorption issues, the only way I

can get his immune system to work properly is with B12 injections.

That may be something to research for your daughter.

Best wishes,

Anita

[Guest guest]

> >

> Melinda,

>

> A big part of controlling the yeast is replacing the good

bacteria. If

> you are only using culturelle, then your yeast protocol will be

> spinning its wheels. Culturelle is a single strain that is

excellent

> against the bad bacteria, but to repopulate the gut you should be

using

> a number of the multistrains. Generally at pretty high doses. My

son

> is about your daughter's weight and I generally give him close to a

> trillion CFU's a day now. It's expensive (!!) but working.

>

Anita, We have used Klaire's Ther-Biotic, Kirkmans pro bio gold, Del-

pro, Sacchararomyces boulardii + you name it. Just recently I

purchased Culturelle because they have 30 billion in one capsule +

got it one sale. Your recommendation made since and I already added

in other pros on top of just Culturelle this morning. Since she can

now tolerate dairy I have gotten out my yogart maker but haven't made

it yet. This is indeed expensive. I have heard of giving 30 billion

and I suspect our practitioner would feel that you can't give too

much. I do remember one time when I felt strongly that the amount I

was giving was causing real hyper. I backed down and it went away.

That was a yr or so ago so she might be able to tolerate more without

a reaction.

> I also wanted to comment on the titres. I really don't understand

> this stuff well, but I'm not sure high titres really is indicitive

of

> viral load. I think it can also mean that your daughter's immune

> system is simply running on overdrive. It may very well be

> imbalanced. Andy has some explanation of this in the viral file.

If

> Andy is right, then I think the approach that needs to be taken

along

> with dealing with viruses is dealing with the immune system. This

> might be particularly important if your child has an overactive

immune

> system because we want to address things before the immune system

burns

> itself out.

>

How do you tone down an immune system that is in overdrive? Am I

making it work too hard by attacking the viruses so hard? From my

understanding Andy suggests attacking the viruses with as much as you

can. She is always more on when attacking viruses. I would think you

should not give anti-virals a break. Oh, I am so confused. Currently

my nt son has the stomach flu. Both kids are on tones of supplements.

My daughter is extra yeasty and warm to the touch but so far isn't

near as sick as my son is. He is miserable and my husband and I are a

little tired but fine. Not sure if I should read into how she is

dealing with the most recent virus in the house or not. How do you

get an immune system back in balance? I have been reviewing dana's

view virus information and thinking thru what I might add to support

the immune sytem. I am not quite sure what else to do. I am not sure

what immune boosters I am over looking.

I have astralagus root and ole more (illiminators) but the yeast is

barely in control without those.

> I went to a conference recently where Dr. Deth talked in great

detail

> about this stuff. It all finally made sense to me. His work

convinced

> me that for my son, who has big malabsorption issues, the only way

I

> can get his immune system to work properly is with B12 injections.

> That may be something to research for your daughter.

>

This sounds very important. We have significant malabsorption issues

as well. I will definately look into this. So B12 helps with the

immune system?

Thanks again, Melinda

> Best wishes,

> Anita

>

[Guest guest]

> >

>

> How do you tone down an immune system that is in overdrive? Am I

> making it work too hard by attacking the viruses so hard? From my

> understanding Andy suggests attacking the viruses with as much as

you

> can. She is always more on when attacking viruses. I would think

you

> should not give anti-virals a break. Oh, I am so confused.

Currently

> my nt son has the stomach flu. Both kids are on tones of

supplements.

> My daughter is extra yeasty and warm to the touch but so far isn't

> near as sick as my son is. He is miserable and my husband and I are

a

> little tired but fine. Not sure if I should read into how she is

> dealing with the most recent virus in the house or not. How do you

> get an immune system back in balance? I have been reviewing dana's

> view virus information and thinking thru what I might add to

support

> the immune sytem. I am not quite sure what else to do. I am not

sure

> what immune boosters I am over looking.

>

> I have astralagus root and ole more (illiminators) but the yeast is

> barely in control without those.

>

Melinda,

In trying to write clearly I realize I might sound like I think I

know it all. I DON'T. sigh. I wouldn't let up on the viruses, as

you say, and I do believe Andy is right about a multi-pronged

attack. Lots of my comments come from the fact that my son lost

almost all of his gains from the viral protocol. Part of that I

belive is because his immune system isn't where it needs to be (and

most ASD kids would fall into the same category). Part of it may be

related to the MB12, which, among other things, can help the process

of inactivating the viruses through methylation. It also plays an

important role in the manufacture of glutathione.

It is VERY confusing because it is all related. If it means

anything, I think you're doing a fabulous job attacking so many

problems at once. I think there is some sort of linear pattern that

may be helpful (eg getting the methylation system working properly,

cleaning up the gut first) but after that it kind of appears to me

that you have to address almost everything at once (chelation, immune

system, viruses, diet, supps, etc, etc). As I've said many times

now, I really am starting to believe that like chelation, viral

protocols may have to be very long term.

The one immune thing I've seen definite improvements with in my

husband is Epicor. I really can't say the same thing for sure about

my ds, but that isn't unusual for ds.

I'm sorry that I just seem to by muddying the waters, Melinda. I

wish I had some clearer answers. I'd share them for sure.

Take care,

Anita

>

[Guest guest]

I just learned yesterday about a different approach from " high doses "

for repopulating the gut with friendly flora. There's a probiotic

blend by an award-winning Japanese scientist (which I just ordered),

and at first I was puzzled why the bacterial count was so " low. " The

article on the link below explains why higher numbers may not

necessarily be better. Here is an excerpt from the article:

" The Japanese scientists, being aware of how the immune system

responds to the invasion of tens of billions of bacteria, reduced the

number of bacteria in their product to assure a favorable immune

system response, which enhances the ability of the friendly bacteria

to implant themselves in the colon. "

http://www.crohns.net/Miva/education/articles/

ohhira_bacterialcount.shtml

Makes sense to me, so I thought I'd share this info . . . -- L

On Jan 23, 2007, at 8:35 AM, Anita wrote:

> .

> A big part of controlling the yeast is replacing the good bacteria. If

> you are only using culturelle, then your yeast protocol will be

> spinning its wheels. Culturelle is a single strain that is excellent

> against the bad bacteria, but to repopulate the gut you should be

> using

> a number of the multistrains. Generally at pretty high doses. My son

> is about your daughter's weight and I generally give him close to a

> trillion CFU's a day now. It's expensive (!!) but working.

[Guest guest]

Anita, You have given me a lot of really good information. Your

comments are helping me a lot! Thank you for being patient.

>

Lots of my comments come from the fact that my son lost

> almost all of his gains from the viral protocol.

I can't imagine. The exact opposite has happened for us as long as we

keep the yeast in control.

Part of it may be

> related to the MB12, which, among other things, can help the

process

> of inactivating the viruses through methylation.

So MB12 helps detox and as we detox the viruses are exposed so that

our immune sytem can fight them.

It also plays an

> important role in the manufacture of glutathione.

I have been thinking about glutathione a lot! We have a bottle of

Kirkman's but I have not supplemented it based on my understanding

that Andy does not think doing so is useful. I think the goal is to

support the body so it can produce its own. Not sure how all that

works either.

I also have been thinking about my daughters high need for

Carnitine. On the autism mercury message board message #193369 I

read that Carnitine is formed from methionine and lysine with the

help of a vitamin c dependent enzyme. A lack of any of the three

would cause a lack of carnitine. I also read that folic acid/b12

contributes to the formation of carnitine.

It is also suggested that supplementation with folinic acid and

betaine has a strong impact on antioxidant capacity in autistic

children.

She has 400mcg's in her multi vitamin and mineral and we have never

supplemented anymore beyond that. Kirkman has folic acid capsules

with B12. Do you think its best to supplement them combined or

separate? During our next phone consult I will talk to our very

expensive doc about MB12 shots. They are prescription only aren't

they?

>

> (eg getting the methylation system working properly,

> cleaning up the gut first)

Just want to brag and maybe I will feel a little better since there

is so much yet for me to understand. My daughter can now tolerate all

foods with enzymes! We really minimize foods that she used to be

intolerant to tho.

As I've said many times

> now, I really am starting to believe that like chelation, viral

> protocols may have to be very long term.

>

I so agree

> The one immune thing I've seen definite improvements with in my

> husband is Epicor. I really can't say the same thing for sure

about

> my ds, but that isn't unusual for ds.

>

I had tried to introduce Virastop at a sprinkle many times. Epicor

was the supplement that allowed us to control the yeast enough to use

ViraStop. Can you give ViraStop at the same time as probiotics? My

daughter had wetting accidents for 6 weeks after starting Epicor. I

really like this supplement!

Thanks again, Melinda

[Guest guest]

> I am going to try adding these in.

> What amount of folic acid and mB12 would you start out with?

800mcg folic, 500mcg mB12.

> I do have 3000mcg B-12 as methylcobalamin sublingual lozenges on

> hand. I haven't added mB12 in the past for fear of increased yeast.

Yes, both folic and B12 will tend to increase yeast.

> Do we know what might respond to mumps?

Possibly the same, but I am not sure.

> I had no idea you could OLE and these amino's on the same day. I had

> stopped using OLE altogether because I wanted to use lysine.

Keep them apart by at least 2 hours.

> Can you use ViraStop and probiotics together?

Yes

Dana

[Guest guest]

>>I have heard of giving 30 billion

> and I suspect our practitioner would feel that you can't give too

> much. I do remember one time when I felt strongly that the amount I

> was giving was causing real hyper. I backed down and it went away.

Once my son's gut was fully populated, giving *any* amount of

probiotics was " too much " .

Dana

[Guest guest]

> I have been thinking about glutathione a lot! We have a bottle of

> Kirkman's but I have not supplemented it based on my understanding

> that Andy does not think doing so is useful.

My son needed glut for approx 2 weeks.

> She has 400mcg's in her multi vitamin and mineral and we have never

> supplemented anymore beyond that. Kirkman has folic acid capsules

> with B12. Do you think its best to supplement them combined or

> separate?

Depends on the doses. Right now I am giving 2100mcg folic and 500mcg

mB12. In the past, my son has needed even higher doses.

Watch for yeast tho.

>> During our next phone consult I will talk to our very

> expensive doc about MB12 shots. They are prescription only aren't

> they?

Yes. My kids are doing fine with oral/sublingual.

>>My daughter can now tolerate all

> foods with enzymes! We really minimize foods that she used to be

> intolerant to tho.

Great!

>>Can you give ViraStop at the same time as probiotics?

Yes

Dana

[Guest guest]

Dana have you been able to resolve the low muscle tone issue your son

was having? On 2/1/07 I added in 1000mcg of MB12 divided into two

doses and 1 mg of folic per day divided into two doses. My daughter

is 5 and around 38 pounds. I have seen no improvement with muscle

tone. Haven't seen any negatives with adding this in and not sure if

I can contribute any positives either. We also continue to give her 4

capsules of 250 mg of Carnitine daily. Any more ideas?

We continue to go low and slow with the viral protocal to keep yeast

semi under control. Her stools usually look normal when she can get

them out unless we have increased the viral protocal too much.

Viral/Yeast Protocal

ViraStop 1/2 capsule three times a day with

1/2 capsule of Candidase

4mg of Biotin with each dose.

500mg of Vit C three times a day. Also using

Lysine 500mg divided into two doses per day (she gets fever blisters)

Epicor

Del-immune

1/2 teaspoon of Kirkman CLO -includes Vit A

300 billion probiotics twice daily

Other supps.

Kirman Children's Mult Vitamin and Mineral

200 IU Vitamin E

25mg of Zinc

Mag Chloride

Mag Citrate

Mag Sulfate cream and baths

Milk Thistle

Oral DMPS & ALA Cutler protocal

We spend so much time addressing the muscle tone issue. I am putting

pads in her underwear. I can barely stand this situation. I did

finally complete an amino acid test earlier this week so hopefully

that will help.

Melinda

> >>We did not have muscle tone issues until we started

> > viral treatment.

>

>

> Try adding or increasing carnitine. Giving it with folic acid and

> mB12 as well as aminos can be VERY beneficial [my son is going thru

> this right now]. Since you are already giving some of these, try

> increasing the folic and mB12.

>

>

> >>She shows marked improvement

> > when given ALA which I feel is due it being an antioxidant.

>

>

[Guest guest]

>

> Dana have you been able to resolve the low muscle tone issue your son

> was having?

Only my #1 had low muscle tone issues, altho all four of my kids

needed carnitine, the other three for other reasons. Yes, the issues

they had have been resolved.

>>On 2/1/07 I added in 1000mcg of MB12 divided into two

> doses and 1 mg of folic per day divided into two doses. My daughter

> is 5 and around 38 pounds. I have seen no improvement with muscle

> tone. Haven't seen any negatives with adding this in and not sure if

> I can contribute any positives either. We also continue to give her 4

> capsules of 250 mg of Carnitine daily. Any more ideas?

Try increasing the carnitine. Maybe add whey protein powder.

Dana