Re: Gaylen//Dr. Goldberg's office

[Guest guest]

Dear . I called your Dr about a week ago and asked for any

information on the Anti-viral therapy but have not received anything yet. I will

call them again tomorrow. I am emailing you to let you know that I am going to

" unsubscribe " from the mercury-autism list. The information is helpful and the

people are great but there are too many emails to sort through every day. I

received 232 today! I would like to correspond with you privately regarding

anti-viral therapy if possible. I would also like to continue corresponding

with Best at bettwice@... about autism and the Boston Red Sox. I also

want to keep corresponding with Hokkanen privately. There is simply too

much information to sort through. I look forward to corresponding with you

privately. Sincerely, Tim Ziegeweid.

Re: [ ] Gaylen//Dr. Goldberg's office

Gaylen and ,

Great info from both of you. OK -- why can't I do a trial of Valtrex

without

a doctor --or another of the antivirals--and see if she responds? What

would

we gain by seeing Dr. Goldberg? What does he do that my local DAN! doctor

could not do? What if I know dosages, side effects, etc--and do a trial

with

my daughter? She is 9 years old and 56 pounds. Please be honest--I would

not

want to do something that hurt my daughter--but I also see that it may be

difficult to get an appointment with Dr. Goldberg and difficult to deal with

him.

Is there any symptom in particular or charateristic that would indicate to

someone that a child may have a viral infection? Group of symptoms? My

daughter

stims, but mostly when she is near bedtime. My daughter has tight heel

cords

and probably sciatica. Are these indications?

If I start with Curt's protocol, would I be OK? is close to 60

pounds. Gaylen posted this:

> At about 60lbs, Curt took 250mg of Valtrex twice a day at first and then

it

> was bumped to 375mg twice a day after a few weeks. He switched to Famvir

> after

> about six weeks and now takes about 187mg twice a day.

Also, would you both try the NAET before, during, or after the antiviral

trial? What about chelation? Should we just stop for a few weeks during

the

antiviral treatment trial?

ANY info would be welcomed by me and probably others!!

Thanks and Gaylen,

in Salt Lake City

[Guest guest]

Hi Gaylen - Thanks for addressing my post. It sounds like you have had many

of the same experiences, but the protocol seems to be working for you and

you're dealing very effectively with Dr. Goldberg's shortcomings. You may be

right

- perhaps I wasn't assertive enough with Dr. Goldberg's rants, tirades, and

lectures. (I'm old and tired(o: ) He just said the same things over and over and

over. I am genuinely happy that you're having a positive experience. Perhpas,

reading through your posts and mine, parents will have a better idea of what

to expect from Dr. G and be better equipped to make their own decision. One

last word of advice, if you do go that route, don't waste 2 years like I did.

He'll tell you that it'll come, just to be patient, but, like Gaylen said, if

you don't see changes in weeks or months, move along!

>

>

> >I wish I could remember the dosage, but it's been a few years. I do

> >remember giving her one of the big blue Valtrex pills (we had to wash

> >the coloring off) once a day, and then we switched to Famvir, also one a

> >day,

> >but a smaller pill.

>

> At about 60lbs, Curt took 250mg of Valtrex twice a day at first and then it

> was bumped to 375mg twice a day after a few weeks. He switched to Famvir

> after

> about six weeks and now takes about 187mg twice a day.

>

> <We continued for a year and a half on these antivirals and

> >>antifungals (and later SSRIs and Kutaressin) with no apparent changes.

> >

> In most of the cases that I've seen that seem to benefit from antivirals,

> the

> progress is pretty obvious within the first few weeks or months. I know of

> only two cases where the kids made such slow steady progress that the

> benefit

> was only seen after the antiviral was removed. Curt experienced rapid

> improvement in motor function and auditory processing within a few weeks on

> an

> antiviral and then slower steady improvement in other areas. I've followed

> progress

> (or lack of it) with several families who started the protocol about

> the

> same time we did. Some have had tremendous progress, others nothing and

> still others worsening.

>

> >When we first went to his office, he told me, smilingly, that he was

> >confident that he could cure my daughter's autism with 12-36 months.

>

> Funny, we experienced a totally opposite attitude. Since we had come in

> openly sharing that he had done chelation, Dr. Goldberg was very negative at

>

> first, talking about " poor prognosis " due to possible " damage " inflicted

> from

> chelation. After meeting with and testing Curtis, however, he changed his

> tune

> very rapidly and then said he thought he " might " be able to help. Anyone

> who

> chooses to see him, does need to know going in that he can be extremely

> autocratic and is prone to go off on rants against other autism treatments

> if you let

> him. I personally think he's ADD himself because he can tend to get a bit

> stuck brained during his rants but if you keep that in mind and work to

> steer the

> conversation towards your individual child and not get into arguements with

> him, he really can be extremely insightful. I went into seeing him with a

> huge

> grain of salt, having heard both bad and good reports from various parents.

> I

> probably would have avoided him if I hadn't seen first hand some tremendous

> progress with a friend of mine's child he had worked with for a year prior

> to

> us considering him. I chose to see him because I felt, and still feel, he

> is

> the most knowledgeable about viral problems in our kids. I wouldn't have

> seen

> him if I hadn't strongly suspected a viral problem with my guy. We have

> found

> that many of the things he recommends have been helpful for my son but we

> are

> not doing everything he's recommended.

>

> > He told me he as planning on working with other doctors, including my

> >ped., some time soon, but he was much too busy " helping the children " to do

>

> >this.

>

> He's still saying this though I have talked to a few people who say he's

> worked directly with their pediatrician.

>

>

> >He told me that miraculous immune modulator clinical trials were just

> >around the

> >corner (6 months to a year - this was 4 years ago) but parents had to pitch

>

> >in and help (in other words, donate money).

>

> Still six months or so away or just needing " a little bit more money " for

> the

> past year we've been following it. Though I haven't ever seen him ask

> parents for donations and when I contacted the group with a foundation

> who

> wanted to donate some money, I was steered towards other research projects

> they

> were doing.

>

> >He told me that my daughter's autistic issues (stimming, hand flapping,

> >etc.)

> >were just bad behaviors and she was being manipulative to avoid learning

> and

> >

> >I should give her a time-out when she did these things. He suggested to one

>

> >mother that she should spank her autistic son for this kind of " bad

> >behavior " .

> >

>

> Not getting any of that but then my kid rarely stims now days. Both times

> his stims have returned though Dr. Goldberg has changed medications which

> did

> help.

>

> >He refused to answer any questions or adjust dosages unless we had a

> >monthly

> >phone consulatation ($$$)

>

> He still requires phone consults with out of towners every 6-7 weeks and

> regular blood work monitoring. He has answered questions between phone

> consults

> for us though and does request e-mail updates every 7-10 days.

>

> >>during which he lectured me about DAN and CAN and how they perpetuated the

>

> >myth of autism.

>

> Still occasionally goes off on rants about them but I've found I can

> redirect

> his attention pretty easily by asking direct questions about my son.

>

> >I don't think, after almost two years, he even knew who my daughter was.

> >He asked the same questions every month and always adjusted the med.

> dosages

> >by 25%. After a few months, I could predict exactly what he was going to

> tell

> >me and by how much he would adjust each medication.

>

> I've found the opposite in our case but have heard other parents saying

> that.

> He's expressed quite a bit of interest in knowing Curtis directly and asked

> many questions. I've been really impressed at how much it appears that he's

>

> really thinking through my son's case. But then I'm the type of parent who

> is

> very assertive, in a sweet southern way . I have been a bit surprised at

> times at what he recommends and have been pleased that he has taken our

> thoughts

> into consideration.

>

> <Once, my daughter was having problems, and I wrote a pagelong,

> >heartfelt fax describing her symptoms and asking for help. His office

> >called back and told me " Take Tylenol for any discomfort " .

>

> I got that once in the early days and nearly blew a gasket. Curtis could

> barely move one of his arms for a few days during the first few weeks on

> Valtrex

> and I was scared. That used to be the pat answer whenever they didn't know

> what to do and at that time it seemed the office staff sometimes pretended

> they'd asked the doctor a question for a parent when they really didn't. I

> had a

> great deal of difficulty with his staff in the early days because they were

> overworked and could often be very rude and unhelpful. It has gotten much

> better

> since he stopped taking new patients to work on this and I've found they've

> been very helpful and much nicer to work with over the past few months.

> Gaylen

>

>

[Guest guest]

Gaylen and ,

Great info from both of you. OK -- why can't I do a trial of Valtrex without

a doctor --or another of the antivirals--and see if she responds? What would

we gain by seeing Dr. Goldberg? What does he do that my local DAN! doctor

could not do? What if I know dosages, side effects, etc--and do a trial with

my daughter? She is 9 years old and 56 pounds. Please be honest--I would not

want to do something that hurt my daughter--but I also see that it may be

difficult to get an appointment with Dr. Goldberg and difficult to deal with

him.

Is there any symptom in particular or charateristic that would indicate to

someone that a child may have a viral infection? Group of symptoms? My daughter

stims, but mostly when she is near bedtime. My daughter has tight heel cords

and probably sciatica. Are these indications?

If I start with Curt's protocol, would I be OK? is close to 60

pounds. Gaylen posted this:

> At about 60lbs, Curt took 250mg of Valtrex twice a day at first and then it

> was bumped to 375mg twice a day after a few weeks. He switched to Famvir

> after

> about six weeks and now takes about 187mg twice a day.

Also, would you both try the NAET before, during, or after the antiviral

trial? What about chelation? Should we just stop for a few weeks during the

antiviral treatment trial?

ANY info would be welcomed by me and probably others!!

Thanks and Gaylen,

in Salt Lake City

[Guest guest]

> Gaylen and ,

>

> Great info from both of you. OK -- why can't I do a trial of

Valtrex without

> a doctor --or another of the antivirals--and see if she responds?

The lack of a permission slip does make it a little harder to get the

stuff. If you get it on the net and she doesn't respond you always

have to wonder if it was real valtrex.

> What would

> we gain by seeing Dr. Goldberg? What does he do that my local DAN!

doctor

> could not do?

I think they both do exactly the same thing - prescribe their pet

protocol to eveyrone who walks in the door. But the protocols are

different.

>What if I know dosages, side effects, etc--and do a trial with

> my daughter? She is 9 years old and 56 pounds. Please be honest--I

would not

> want to do something that hurt my daughter--but I also see that it

may be

> difficult to get an appointment with Dr. Goldberg and difficult to

deal with him.

I think this is reasonable. Anyone care to post Goldberg's protocol

in enough detail people can give it a try with or without a doctor as

they do for chelation?

> Is there any symptom in particular or charateristic that would

indicate to

> someone that a child may have a viral infection? Group of symptoms?

My daughter

> stims, but mostly when she is near bedtime. My daughter has tight

heel cords

> and probably sciatica. Are these indications?

>

> If I start with Curt's protocol, would I be OK? is close to

60

> pounds. Gaylen posted this:

> > At about 60lbs, Curt took 250mg of Valtrex twice a day at first

and then it

> > was bumped to 375mg twice a day after a few weeks. He switched to

Famvir

> > after

> > about six weeks and now takes about 187mg twice a day.

>

> Also, would you both try the NAET before, during, or after the

antiviral

> trial? What about chelation? Should we just stop for a few weeks

during the

> antiviral treatment trial?

If you are doing the other stuff routinely you could stop or not, if

you aren't of course you will have difficulty sorting out what worked.

> ANY info would be welcomed by me and probably others!!

>

> Thanks and Gaylen,

> in Salt Lake City

>

>

>

> [Non-text portions of this messag

[Guest guest]

In a message dated 9/27/03 11:15:55 PM Central Daylight Time,

BrandtMrse@... writes:

> why can't I do a trial of Valtrex without a doctor --or another of the

> antivirals--and see if she responds?

I don't think you can get it without an RX but if you can, I'd be extremely

hesitant to use it without close monitoring from a doctor. From what I

understand, antivirals tend to not have as many potential liver issues as RX

antifungals but they can stress the body in other ways so it's best to monitor

progress/potential harm with blood work. If your pediatrician is willing, it

would

probably be ok to go that route.

> What would we gain by seeing Dr. Goldberg? What does he do that my local

> DAN! doctor could not do? What if I know dosages, side effects, etc--and do

> a trial with my daughter?

Your local DAN doc could prescribe an antiviral but without the extensive

experience in using them that Dr. Goldberg or other viral docs have, he/she may

not be able to adjust the protocol individually as well to most effectively

address your child's needs.

A simple, regular protocol on Valtrex or other antiviral may be all some kids

need but others may need more " fine tuning " which is where someone with

extensive experience would come in handy. Given the lack of good viral docs who

can see patients quickly, if you have a doc who is willing to prescribe an

antiviral and willing to try to fine tune it with your kid, it would probably be

a

good way to start. If you feel you need more expertise later, you can always

get on one of their waiting lists.

> >Is there any symptom in particular or charateristic that would indicate to

>

> someone that a child may have a viral infection? Group of symptoms? My

> daughter

> stims, but mostly when she is near bedtime. My daughter has tight heel

> cords

> and probably sciatica. Are these indications?

I can only share with you what Dr. Goldberg and other viral docs have

mentioned to me or through other lists. There probably many subtle signs of

viral

problems I'm not aware of. The clearest symptoms in my son were motor problems,

especially a tendency to not be able to use one side (most often the right

side) of his body as well as the other. While I know of some kids who have

responded really well to antiviral treatment who didn't have motor problems,

most

of the ones who seem to respond the best were regressive cases of autism that

also had/have motor problems. Dr. G said that viruses tend to affect specific

areas while toxins seem to affect things more globally. Also, a tendency to

have cycling function, especially that involves motor like ability to form

words, mouth movements, and fine motor skills, can often indicate a virus.

Functions involving the temporal lobe of the brain -- sensory integration,

obsessiveness, focus, anxiety, social awareness, sleep issues, eating issues,

etc --

can be viral related according to Dr. Goldberg because he says many viruses

tend to most affect this lobe. To confuse issues though, he also said that the

temporal lobe inflamation can spill over to cause issues in other areas of the

brain as well so it's not always clear cut. Interestingly, many of my son's

challenges pointed very strongly to the frontal lobe area but he did very

poorly on drugs that affected the frontal lobe. I was very leary when Dr.

Goldberg

said he thought this may be more of a temporal lobe thing in my son " spilling

over " to affect frontal lobe function. He has turned out to be correct.

We've seen a huge decrease in frontal lobe challenges (focus, executive

function,

hyperactivity) as he's addressed the temporal lobe.

> If I start with Curt's protocol, would I be OK?

Probably starting with that (with a doctor who agrees to run regular CBCs)

would be ok but watch her very very carefully and adjust the medicine if needed.

If it's hitting something, you will probably see a " die-off " or " adjustment "

period of up to 21 days where there will be a worsening of symptoms, flu-like

symptoms and generally not feeling well. Some people don't have any

" die-off " problems but just start progressing. Curtis had a combo of " die-off "

and

progress during the six weeks on Valtrex. Dr. G said his symptoms indicated

that we were hitting something but not as effectively as we could so he switched

to Famvir. Then the negatives disappeared and his progress increased. You

might want to subscribe to the list to be able to post things you

notice and hear from other people using antivirals.

> Also, would you both try the NAET before, during, or after the antiviral

> trial?

If you haven't already started this, I'd only do one thing at a time at first

until you know each thing isn't causing problems and know if it's helping so

you don't get confused on what's working and what's not.

> > What about chelation? Should we just stop for a few weeks during the

> antiviral treatment trial?

>

I don't know much about doing both at the same time but nne on this list

is doing both so she may chime in. You might want to post to Dr. McCandless

on the ABMD list to get her opinion since she does both chelation and

antiviral stuff with her patients. If it were me, I'd choose one or the other

to

focus on first and then make sure the patient was far enough along in either

before adding the other but Dr. McCandless would be more helpful with that.

Gaylen

[Guest guest]

THIS IS SO HELFUL!! Thanks.

in Salt Lake City

[Guest guest]

I just wanted to add that my doctor suggests acyclovir for a trial first. It's

not as

strong as valtrex and you will get an idea if they tollerate it or not. Then we

moved

to valtrex.

momtocd@... wrote:

> In a message dated 9/27/03 11:15:55 PM Central Daylight Time,

> BrandtMrse@... writes:

>

> > why can't I do a trial of Valtrex without a doctor --or another of the

> > antivirals--and see if she responds?

>

> I don't think you can get it without an RX but if you can, I'd be extremely

> hesitant to use it without close monitoring from a doctor. From what I

> understand, antivirals tend to not have as many potential liver issues as RX

> antifungals but they can stress the body in other ways so it's best to monitor

> progress/potential harm with blood work. If your pediatrician is willing, it

would

> probably be ok to go that route.

>

> > What would we gain by seeing Dr. Goldberg? What does he do that my local

> > DAN! doctor could not do? What if I know dosages, side effects, etc--and

do

> > a trial with my daughter?

>

> Your local DAN doc could prescribe an antiviral but without the extensive

> experience in using them that Dr. Goldberg or other viral docs have, he/she

may

> not be able to adjust the protocol individually as well to most effectively

> address your child's needs.

> A simple, regular protocol on Valtrex or other antiviral may be all some kids

> need but others may need more " fine tuning " which is where someone with

> extensive experience would come in handy. Given the lack of good viral docs

who

> can see patients quickly, if you have a doc who is willing to prescribe an

> antiviral and willing to try to fine tune it with your kid, it would probably

be a

> good way to start. If you feel you need more expertise later, you can always

> get on one of their waiting lists.

>

> > >Is there any symptom in particular or charateristic that would indicate to

> >

> > someone that a child may have a viral infection? Group of symptoms? My

> > daughter

> > stims, but mostly when she is near bedtime. My daughter has tight heel

> > cords

> > and probably sciatica. Are these indications?

>

> I can only share with you what Dr. Goldberg and other viral docs have

> mentioned to me or through other lists. There probably many subtle signs of

viral

> problems I'm not aware of. The clearest symptoms in my son were motor

problems,

> especially a tendency to not be able to use one side (most often the right

> side) of his body as well as the other. While I know of some kids who have

> responded really well to antiviral treatment who didn't have motor problems,

most

> of the ones who seem to respond the best were regressive cases of autism that

> also had/have motor problems. Dr. G said that viruses tend to affect specific

> areas while toxins seem to affect things more globally. Also, a tendency to

> have cycling function, especially that involves motor like ability to form

> words, mouth movements, and fine motor skills, can often indicate a virus.

> Functions involving the temporal lobe of the brain -- sensory integration,

> obsessiveness, focus, anxiety, social awareness, sleep issues, eating issues,

etc --

> can be viral related according to Dr. Goldberg because he says many viruses

> tend to most affect this lobe. To confuse issues though, he also said that

the

> temporal lobe inflamation can spill over to cause issues in other areas of the

> brain as well so it's not always clear cut. Interestingly, many of my son's

> challenges pointed very strongly to the frontal lobe area but he did very

> poorly on drugs that affected the frontal lobe. I was very leary when Dr.

Goldberg

> said he thought this may be more of a temporal lobe thing in my son " spilling

> over " to affect frontal lobe function. He has turned out to be correct.

> We've seen a huge decrease in frontal lobe challenges (focus, executive

function,

> hyperactivity) as he's addressed the temporal lobe.

>

> > If I start with Curt's protocol, would I be OK?

>

> Probably starting with that (with a doctor who agrees to run regular CBCs)

> would be ok but watch her very very carefully and adjust the medicine if

needed.

> If it's hitting something, you will probably see a " die-off " or " adjustment "

> period of up to 21 days where there will be a worsening of symptoms, flu-like

> symptoms and generally not feeling well. Some people don't have any

> " die-off " problems but just start progressing. Curtis had a combo of

" die-off " and

> progress during the six weeks on Valtrex. Dr. G said his symptoms indicated

> that we were hitting something but not as effectively as we could so he

switched

> to Famvir. Then the negatives disappeared and his progress increased. You

> might want to subscribe to the list to be able to post things you

> notice and hear from other people using antivirals.

>

> > Also, would you both try the NAET before, during, or after the antiviral

> > trial?

>

> If you haven't already started this, I'd only do one thing at a time at first

> until you know each thing isn't causing problems and know if it's helping so

> you don't get confused on what's working and what's not.

>

> > > What about chelation? Should we just stop for a few weeks during the

> > antiviral treatment trial?

> >

>

> I don't know much about doing both at the same time but nne on this list

> is doing both so she may chime in. You might want to post to Dr. McCandless

> on the ABMD list to get her opinion since she does both chelation and

> antiviral stuff with her patients. If it were me, I'd choose one or the other

to

> focus on first and then make sure the patient was far enough along in either

> before adding the other but Dr. McCandless would be more helpful with that.

> Gaylen

>

>

[Guest guest]

> Thanks for the info!!

>

> So why do you need a specialized doctor, or any doctor for this?

>

> What does Dr. Goldberg do during the physical exam? What medical

history does he pursue?

> My adopted daughter's birth mother had Genital Herpes flare-up

around the

> time of her delivery. Yes, it was a C-section, but it took more

than a day to

> finally do the C-section. Did Dr. Goldberg ask about maternal

issues?

been removed]

Hi ,

There seems to be confusion on the concept and treatment of .

It is based on a dysfunctional immune system. If you look at the

credible research on autism, they've found immune abnormalities like

low C4B(increased susceptability to infections) HLA-DR4 (common in

immune/autoimmune disorders) and various studies finding immune

reactions against foods, pathogens, and self antigens. The immune

dysfunction is receiving more validation due to recent genetic

research at the NIH. They found that the genetic locations for

autism and tourettes, overlapped with susceptability genes for

immune/autoimmune disorders.

There is a very detailed history taken, and extensive bloodwork is

done. Besides ruling out any common problems, you are also looking

at various parts of the immune system for abnormalities and for

indications of low level infections. A complete food panel is also

run as another indication of the degree of immune activation. If

the bloodwork leaves questions then a neurospect is done for

clarification.

When someone is genetically susceptable to immune problems, their

immune system may not return to homeostasis after an illness or some

other type of stressor. What they see in CFS is the immune system

gets thrown into a type two response which is towards the allergy,

antigen side. They have activation of the antiviral pathway, but

dysfunctional natural killer cells and lack the response needed to

completely suppress infections.

The purpose of treatment is to remove the factors that are keeping

the immune system stimulated. Cytokines that are produced by the

immune system have the ability to directly alter how the brain

functions. The brain also has the ability to alter how the immune

system responds due to the back and forth communication.

It is a step by step process, with many components. We are always

looking at the response to medications and their labwork. It was

everything combined that helped my children. The SSRI's were a

component but the beginning dose and increases are very small. My

younger son has to stay on a very low dose for benefits. We have

never been able to increase to a dose that was mentioned previously

without negative effects.

If you want to pursue this type of treatment.....PLEASE find a

medical doctor who will work with you. Parents shouldn't be trying

to self treat with medications.

Cheryl

[Guest guest]

> If you want to pursue this type of treatment.....PLEASE find a

> medical doctor who will work with you. Parents shouldn't be trying

> to self treat with medications.

I would characterize this part as the great religious debate of the

day - does America's state religion permit you to help your child

without the permission of a priest in a white robe?

> > So why do you need a specialized doctor, or any doctor for this?

Otherwise I think the real question is the same as it is for the bogus

" metabolic typing " garbage masquerading as alternative medicine - does

everyone get prescribed essentially the same treatment (my impression

is yes) and does it get optimized entirely on the basis of parent

evaluation (my perception is yes) in which case there is neither any

need for the expensive testing or the expensive doctor.

It might be productive if everyone on the list who has done the " nids

protocol " would simply post exactly what was prescribed. Ignore all

the garbage about WHY it was Rx'd, just tell us how much your kid

weighs and what was prescribed.

If they are all pretty much the same, doctor unnecessary. If they are

all different, doctor may in fact be helpful.

Andy . . . .. . . . . . . . . .

[Guest guest]

Hi ,

Thanks for all your info. Is your child a patient of Dr. 's office?

Any results yet?

I did get the info from Dr. 's office. It is so vague and so poorly

written that I am left with lots of questions. He does about the same thing as

Dr. Harold Levinson in New York, but Dr. adds the antivirals. I

believe my daughter has had all the tests that Dr. does. She had many

problems which have improved remarkably with meclizine and other supplements for

inner ear dysfunction. She also went through eye tracking therapy, sensory

integration therapy, and art therapy which Dr. Levinson recommended.

Nonetheless, hands down, the meclizine was the BIG breakthrough. has

never lost

all the remarkable progress she made on meclizine. Meclizine is the generic

name of Bonine. It is a big help for inner ear problems.

I am trying to get to some of Dr. 's papers to see what he has

researched. Can you suggest a specific paper?

Do you know which antivirals he uses and in what doses? That would help me

contrast him with Dr. Goldberg.

Thanks,

in Salt Lake

[Guest guest]

The Doc. in Austin, Texas has several tests that he performs having to do with

the inner ear. The Herpes virus can cause the poor coordination, balance

issues, sensitivity to loud noises, etc. It woud be a good thing to just call

them and ask for their brochure on autism and read what they have on it. This

doc has a test that he does to see if your child is improving with the valtrex

treatment. I would assume that if there is not improvement, then the virus

issue is not a problem.

Jennfer

Ruston, Louisiana

Re: [ ] Gaylen//Dr. Goldberg's office

Gaylen and ,

Great info from both of you. OK -- why can't I do a trial of Valtrex without

a doctor --or another of the antivirals--and see if she responds? What would

we gain by seeing Dr. Goldberg? What does he do that my local DAN! doctor

could not do? What if I know dosages, side effects, etc--and do a trial with

my daughter? She is 9 years old and 56 pounds. Please be honest--I would not

want to do something that hurt my daughter--but I also see that it may be

difficult to get an appointment with Dr. Goldberg and difficult to deal with

him.

Is there any symptom in particular or charateristic that would indicate to

someone that a child may have a viral infection? Group of symptoms? My

daughter

stims, but mostly when she is near bedtime. My daughter has tight heel cords

and probably sciatica. Are these indications?

If I start with Curt's protocol, would I be OK? is close to 60

pounds. Gaylen posted this:

> At about 60lbs, Curt took 250mg of Valtrex twice a day at first and then it

> was bumped to 375mg twice a day after a few weeks. He switched to Famvir

> after

> about six weeks and now takes about 187mg twice a day.

Also, would you both try the NAET before, during, or after the antiviral

trial? What about chelation? Should we just stop for a few weeks during the

antiviral treatment trial?

ANY info would be welcomed by me and probably others!!

Thanks and Gaylen,

in Salt Lake City

[Guest guest]

>

> Cheryl,

> From what I have read, there are many competing theories on why a

virus could

> cause autistic spectrum symptoms. The myelin sheath being attacked

is one

> that I have read over and over. Is that related to the

cytokines? >

> Thanks for sharing your experiences, Cheryl.

> in Salt Lake City

,

One thing that I'd recommend is looking at research in other brain

disorders, or the brain in general. The type of publication is also

a factor. Different publications are considered more credible than

others. Some are more like magazines and others like Science are

given much more weight because they won't publish poorly done

research. With the better publications it's not uncommon to see

papers resubmitted several times because of the peer review process.

Regarding the immune system, there are different types of immune

responses. They span from destructive reactions causing damage, to

reactions involved in repair or protection. Some are directed

against a receptor which alters function but is not causing damage.

One example would be the cytokine interferon alpha that was elevated

when we did our initial bloodwork with Dr. Goldberg. One of the

reasons this becomes elevated is in response to a viral infection.

If you have the flu this is one of the cytokines that increases and

contributes to many of those brain related symptoms. It's not

causing damage in the brain, but it makes it so the brain doesn't

work right. You can't think, you feel spacey and out of it. Yet,

it's probably one of the bodies way of protecting you/the brain and

focusing on resolving the infection.

I'm seeing more research discussing the negative aspects of

interferon because they are using it to treat some diseases. One of

the things coming out were the psychiatic effects on patients. Some

are beginning to use antidepressants to offset some of the effects

in patients related to the serotonin problems that come from that

type of immune activation.

This is only one cytokine, but think of how that one cytokine would

effect someone like my son if his body is constantly producing

elevated amounts? Then add more that can change other functions in

his brain and body.

Finding a doctor is not always easy. Increasing awareness and

interest from doctors is one of the problems that many parents are

trying to address. According to something I saw posted recently,

the recommendation that a parent received from Dr. Singh was

" You probably need to consult both a neurologist and an immunologist

or more appropriately a neuroimmunologist who is specialized in

children rather than the adults. Such a person would be extremely

difficult to find simply because they are the rare breeds of our

medical education system today "

If more parents became involved we could probably accomplish this

much quicker.

Cheryl