Dr.

April 17, 2003

Lori,

Dr. 's contact info. follows:

Dr. Kendal / 6836 Bee Caves Rd #300; Austin, Texas

512-338-0863

I am not sure of the zip code. You can ask the office staff when you

call.

Hope this helps!

-

> Would someone familiar with Dr. in Austin TX share contact

info. with me. I would like to follow up with what this doctor is

doing to treat virus's but can not locate anything about him/her. I

would also like to consult with another doc. to get another opinion

on some issues we are having with high ammonia levels. I was

recommended to Dr. Bock as someone also dealing with high

viral titers in our children, anyone have experience with him past or

present? I know he is associated with DAN but not too much more.

>

October 10, 2003

In a message dated 10/9/03 12:58:13 PM Central Daylight Time,

jcneffendorf@... writes:

> I wish I knew what the difference was with the two Drs. because they sound

> like the same.

I'll take a stab at comparing but ask others to jump in if I mistate

something. We've been seeing Dr. Goldberg for about 10 months and have talked

to

various families to gather info about Dr. 's protocol since his office is

in my state. Still learning about Dr. though so anyone who knows more,

please jump in to correct any misinterpretations or add anything.

Overall theories/focus:

Dr. Goldberg focuses heavily on his belief that the immune system is

dysregulated and cannot properly respond to various stressors so he tries to

lighten

the load by treating or avoiding various stressors and hopes to ultimately

offer immune system regulators (not available yet). He focuses heavily on

treating viruses but also treats other potential stressors. His treatment is

usually

long-term, though some patients can get off the meds and retain progress

after 1-3 years of treatment

Dr. (as I understand it) focuses on the virus lodging in the nerves

as the main problem -- treats the virus and believes the problem can be cured

quickly. I've heard 6 months is his typical treatment period.

Testing:

Dr. Goldberg focuses heavily on blood testing of the immune system, CBC and

other tests (listed on his site) and monitors blood tests throughout the

process. He also runs neurospect scans on many kids to see how blood is flowing

to

various areas of the brain.

Dr. uses tests on innner ear function to measure pressure (again, I

may not fully understand this), he does some other tests I don't recall right

now but none of them were similar to the ones Dr. G runs. His expertise and

focus is very heavily on inner ear and balance issues, though I could see where

this would translate to autism due to the vestibular problems many of our kids

have.

Treatment:

Dr. Goldberg starts with dietary manipulation to reduce foods stressing the

system, then treats viruses and yeast in the order he feels they're stressing

the child most. He uses Valtrex and Famvir for viruses; Nizoral, Diflucan and

Lamisil for fungus. In some cases, he also treats strep with antibiotics.

When he feels the body is " clean enough " he adds a SSRI drug (Paxil, Zoloft,

Celexa) to " jump start " healing and rebuilding of function in the temporal lobe.

He introduces all meds one at a time and insists on updates on

results/functioning every 7-10 days. When the child has reached the point he

feels is

stable or " normal " enough, he begins slowly removing drugs.

Dr. -- Treats viruses with Valtrex only (I've never heard of him

using any of the other drugs but I could be wrong here) and usually for only 6

months. He also uses cortef to reduce swelling in all the kids (a steriod drug

-- Dr. Goldberg is very anti-steriods in these kids because he feels they crash

the immune system and aggravate viral problems). He also uses Provigil, an

anti-dizziness/narcolepsy drug, though I'm not sure if he uses this in all

cases. I've also heard that he uses human growth hormone in many cases.

That's about as much as I've been able to gather. It would be really helpful

if some of the folks who are seeing Dr. could fill in additional info

and/or correct any misinterpretations I've made.

Gaylen

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

October 10, 2003

Jenifer,

I know just how you feel (about being overwhelmed)... that was how I felt

after our first appointment with Dr. Goldberg. I remember telling my

husband that I felt as if I had just read an encyclopedia. Dr. Goldberg has

always been very open to our tape recording our son's appointments (both in

his office and on the phone... of course we ask his permission each time).

You might want to ask Dr. if he would mind if you taped the

appointments. It is extremely difficult to listen, think to ask questions,

comprehend the answers, take notes and watch your child all at the same

time. Best of luck.

Caroline

> On 10/9/03 8:48 AM, " Jenifer Neffendorf " <jcneffendorf@...> wrote:

> It was a little overwhelming to hear it

> all at first so I am taking my husband with me next

> time.

October 10, 2003

Dena,

Thanks so much for sharing your knowledge of Dr. 's work. It sounds

like your son is doing very well. If you don't mind, I have some questions

about some things you mentioned.

> The lab he does is a general lab to check overall function of liver and

> kidneys, he does a growth hormone level and a cortisone level.

What specific tests does he run to check liver and kidney function? Also, is

the growth hormone level test a blood test? Do you know if it can be run by

any lab or is there a special one he uses?

>

> >He has most patients use a homeopathic growth hormone stimulating patch

> (stimulates Insulin dependent growth hormone factors (IGF I-IV)). He believes

> that ASD children are not getting into the stage IV or " deep sleep " stage and

> this is

> when the IGF I-IV are produced. He tells us that the IG factors are a key

> component for healing in the body. It helps the body fight off things.

I've wondered if HGH would be helpful for my son, especially since he's so

small. I'll ask Dr. G his opinion during our next phone consult and if anyone

is interested I'll post what he says. You mention that it is a " homeopathic "

patch -- does this mean that it is not the actual hormone treatment but rather

a homeopathic remedy? I've never heard of homeopathic remedies given by

patch. Do you know how long his patients use this patch, typically?

> He does rx valtrex only and the provigil is used for the first 6-8 months

> of treatment (dependent on the severity of the childs symptoms-at least this

> is my understanding). He told us it is used to asst. with fine motor and

> concentration.

Was that the Valtrex or the Provigil that assists with fine motor and

concentration? We have certainly seen much progress in those areas with Famvir.

Also, did he share what specific symptoms would make him think Provigil would be

most helpful for?

> > Being a neurosurgeon he has biopsied ASD brains and has found the HSV

> antibody on several of the nerve tracks.

That's extremely interesting. Has he or any other doctors written any

published papers on this finding?

Have you talked to any of the parents whose children have completed his

protocol -- like more than a year past his treatment? I'd be really interested

in

hearing if the kids maintain their progress.

Gaylen

October 10, 2003

My son is seeing Dr. and wanted to give alittle more info on

the test and treatment. The lab he does is a general lab to check

overall function of liver and kidneys, he does a growth hormone

level and a cortisone level. He has most patients use a homeopathic

growth hormone stimulating patch (stimulates Insulin dependent

growth hormone factors (IGF I-IV)). He believes that ASD children

are not getting into the stage IV or " deep sleep " stage and this is

when the IGF I-IV are produced. He tells us that the IG factors are

a key component for healing in the body. It helps the body fight off

things. He has found that ASD children are in the low normal range

and that they seem to benefit by being in the high normal range. He

does rx valtrex only and the provigil is used for the first 6-8

months of treatment (dependent on the severity of the childs

symptoms-at least this is my understanding). He told us it is used

to asst. with fine motor and concentration. The est. time of

treatment he gave us was 6-12 months, but cautioned it may be more.

He told us he just cleans the HSV out of these children so the

therapist have a clean slate to work with. He has a passion for

this and will let you know in heart beat where he is coming from.

He has studied this at length. Being a neurosurgeon he has biopsied

ASD brains and has found the HSV antibody on several of the nerve

tracks. He will sit and explain everything very carefully and

answer ANY questions you have. He is VERY patinet with people asking

questions (my husband is the " question asker " of the family (as he

is unfamiliar with all the medical terms). He gives you a wealth of

information to read and understand.

My son has been on the valtrex (with cortef for 2 weeks in the

beginning only) and the provigil for 7 weeks now. He has gone from a

non-verbal child with 2 signs to a child who has 10 words and 6

signs. He is more social and has GREAT eye contact. He would NEVER

touch a toy to play with it and now he plays and even has started to

show an interest in books! His in-home and school therapist are all

amazed at his progress. I also keep up with another mother who has

two children and herself on the protocol via stewart (for 4 weeks

now) and has made tremendous leaps! I would not recommend this MD if

I had not seen any progression in my child or if he did not have

good bedside manners! My husband and I think he is one of the best

MDs we have had contact with since starting this horrific journey

into ASD.

HTH and Good Luck,

Dena

Mother of Hayden (3.3 years)

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

October 10, 2003

Dena,

I thought Dr. 's training was in otolaryngology, not

neurology. You mentioned that he his a " neurosurgeon " but I couldn't

find any history of training in neurology on his website. do you

know where he got his neurosurgery training?

thanks,

Timary

> My son is seeing Dr. and wanted to give alittle more info

on the test and treatment. The lab he does is a general lab to check

> overall function of liver and kidneys, he does a growth hormone

> level and a cortisone level. He has most patients use a

homeopathic growth hormone stimulating patch (stimulates Insulin dependent

> growth hormone factors (IGF I-IV)). He believes that ASD children

> are not getting into the stage IV or " deep sleep " stage and this is

> when the IGF I-IV are produced. He tells us that the IG factors

are a key component for healing in the body. It helps the body fight

off things. He has found that ASD children are in the low normal range

> and that they seem to benefit by being in the high normal range.

He does rx valtrex only and the provigil is used for the first 6-8

> months of treatment (dependent on the severity of the childs

> symptoms-at least this is my understanding). He told us it is used

> to asst. with fine motor and concentration. The est. time of

> treatment he gave us was 6-12 months, but cautioned it may be

more. He told us he just cleans the HSV out of these children so the

> therapist have a clean slate to work with. He has a passion for

> this and will let you know in heart beat where he is coming from.

> He has studied this at length. Being a neurosurgeon he has

biopsied ASD brains and has found the HSV antibody on several of the nerve

> tracks. He will sit and explain everything very carefully and

> answer ANY questions you have. He is VERY patinet with people

asking questions (my husband is the " question asker " of the family (as he

> is unfamiliar with all the medical terms). He gives you a wealth

of information to read and understand.

> My son has been on the valtrex (with cortef for 2 weeks in the

> beginning only) and the provigil for 7 weeks now. He has gone from

a non-verbal child with 2 signs to a child who has 10 words and 6

> signs. He is more social and has GREAT eye contact. He would

NEVER touch a toy to play with it and now he plays and even has started

to show an interest in books! His in-home and school therapist are

all amazed at his progress. I also keep up with another mother who has

> two children and herself on the protocol via stewart (for 4 weeks

> now) and has made tremendous leaps! I would not recommend this MD

if I had not seen any progression in my child or if he did not have

> good bedside manners! My husband and I think he is one of the best

> MDs we have had contact with since starting this horrific journey

> into ASD.

> HTH and Good Luck,

> Dena

> Mother of Hayden (3.3 years)

______________________________________________

Responsibility for the content of this message lies strictly

with the original author, and is not necessarily endorsed

by or the opinion of the Research Institute.

`````````````````````````````````````````````````

October 10, 2003

> What specific tests does he run to check liver and kidney

function? Also, is

> the growth hormone level test a blood test? Do you know if it can

be run by

> any lab or is there a special one he uses?

The lab test he runs are the basic ones, SMA 24, BUN, Creatine,

LFTs. Then he adds in GH levels, TSH, and cortisone levels. The Gh

levels are done by any lab, I assume. We went to the one our

insurance pays for and it is a general lab.

>> I've wondered if HGH would be helpful for my son, especially

since he's so

> small. I'll ask Dr. G his opinion during our next phone consult

and if anyone

> is interested I'll post what he says. You mention that it is

a " homeopathic "

> patch -- does this mean that it is not the actual hormone

treatment but rather

> a homeopathic remedy? I've never heard of homeopathic remedies

given by

> patch. Do you know how long his patients use this patch,

typically?

The company calls it homeopathic because it is made from recombinant

form of GH identical to the knid found in the human. It is not

prescribed and we order it online from www.ageforce.com. It is a

really neat little patch and they now have nose and mouth sprays. I

had one on for a day and it made me feel so energized. I was clear

in thinking and didn't feel the usual mid-day drag I feel. Weird,

but it helped me figure out why Hayden had been waking up and not

falling back to sleep with it on (we USED to put it on at night and

take it off in the morning, as he hates things stuck on him.)!

> Was that the Valtrex or the Provigil that assists with fine motor

and

> concentration? We have certainly seen much progress in those

areas with Famvir.

> Also, did he share what specific symptoms would make him think

Provigil would be

> most helpful for?

The provigil is for the fine motor and concentration. Hayden had a

hard time with gross and fine motor skills which are slowly coming

along. He is now able to climb up on things and use markers for

coloring.

> That's extremely interesting. Has he or any other doctors written

any

> published papers on this finding?

He told my husband that he has, but I was not in there for that part

of the conversation as I had to pick up after Hayden (it was the end

of the visit and Hayden had been eating (and mangling) chicken

nuggets).

> Have you talked to any of the parents whose children have

completed his

> protocol -- like more than a year past his treatment? I'd be

really interested in

> hearing if the kids maintain their progress.

I have only been in contact with four families and all except for

one has started after us. The one that started before us was more

severe than Hayden and (as all the others too) is 3 years older than

Hayden. I guess I could ask Dr. for some names, but since I

talked with the family before us (but still in the protocol -it has

been 8 months for them) I didn't ask.

Dena

Mother of Hayden (3.3 years)

October 10, 2003

He is board certified in Otolarngology, but he is also trained as

and has functioned as a neurosurgeon as well as an allergist. You

don't have to be board certified to do these.

On his website you will see the following:

7/88-6/90

General Surgery Internship and Residency

Univ. of Texas at Houston / Hermann Hospital / MD Hospital

Houston, TX

7/90-6/95

Otolaryngology /Head and Neck Surgery Residency

Univ. of Texas at Houston / Hermann Hospital / MD Hospital

Houston, TX

7/95-6/96 Otology / Neurotology / Skull Base Surgery Fellowship

Baylor University Medical Center

Dallas, TX

As you can see in his post-residency training he does train in

general surgery, head and neck surgery and skull base surgery. He

does refer to himself as a neurosurgeon and allergist. I think he

does a lot with research now.

Hope that clears things up.

Dena

Mother of Hayden (3.3 years old)

December 31, 2004

Kim,

My local clinic with a PA who has a MD over her is how I got my LDN script. Being progressed as I was, he thought I had nothing to lose with trying it. So, he wrote the script. I have never given his name out, but I'm sure he would welcome new patients in his office. I don't think he would do the phone consult type thing. We are in West Texas if anyone is interested. E-mail me personally.

Marcie

In a message dated 12/31/2004 9:41:31 AM Central Standard Time, petessweetheart@... writes:

Hopefully, I will be able to get a local doctor to prescribe it for him, and I will begin working on this immediately. But just in case, I'll take all the help I can get. I would prefer you emailed me privately with names and numbers, though. I think we have to be careful from here on in.

Wishing you all a very happy and healthy new year!

Kim

December 31, 2004

> >

> > Please note that Dr. is no longer doing telephone

> > consultations for LDN. I was just informed. I had called to

> verify

> > the date of my next consultation in January. I asked the reason

> for

> > the sudden change but his receptionist did not want to get into the

> > issue. Does anyone know why?

>

> I have been afraid this was going to happen all along. I really

> never thought the phone consults were legal, and was told by other

> doctors that they weren't, that you could not " treat " a patient you

> had never seen. It would void malpractice insurance, etc. At least

> that is what I was told. But we used Dr. as well, just because

> no one else would prescribe LDN for my son, and I will continue to do

> whatever I have to in order to get it for him.

>

> As for why this happened, I'm willing to speculate that someone got

> angry, whether it be a pharma company or a patient who was disturbed

> over him raising his consultation fees every time you turned around.

> I've read several comments from patients regarding his fees going up

> on different boards and all they would have had to do is report him

> to the AMA, and we can't put anything " above " the bigger pharmas as

> far as marketing goes for their drugs. I don't think I'm being

> paranoid here, just realistic. Someone has managed to hurt alot of

> people by doing this.

>

> We may be in error to continue to post the list of phone consult docs

> here. What do you think? It would be interesting to know if they

> have all been stopped in their tracks. Does anyone else use any of

> the other phone consult docs out there and can you find out if they

> are still doing this? If so, I would love for someone to privately

> email me their information so that I can contact them for Colby. I

> will do a LDN count today, and I think we have enough for a couple of

> months, but I should move fast on this. LDN has made too big of a

> difference in his life for me to allow him to run out, and I do not

> trust using the Revia.

>

> Hopefully, I will be able to get a local doctor to prescribe it for

> him, and I will begin working on this immediately. But just in case,

> I'll take all the help I can get. I would prefer you emailed me

> privately with names and numbers, though. I think we have to be

> careful from here on in.

>

> Wishing you all a very happy and healthy new year!

>

> Kim

===========

Kim,

your son's GP should be willing to write a script by now since he's had so much

success with the drug. You're not anywhere near the state of Arkansas are you?

My ophthalmologist would do an eye exam on your son and with my eye docs

alternative medicine practice, would then write a script for LDN for his

auto-immune disease. My eye doc/alternative medicine doc actually see's the

patients, no phone consults and he MUST do an eye exam, which is important

anyway with people who are ill. My ophthalmologist spends lots of time

attending classes for both eye care and alternative medical care. Once a person

has exhausted all means with traditional medicine for help in reducing pain

they usually turn to this doctor for help. He does many different pain

therapies.

December 31, 2004

Just reading the posts about Dr. and sorry to say they are

true. My daughter had been waiting for a month for a phone consult

with Dr. and received a call yesterday saying he was no longer

doing the phone interviews and gave no explanation! We were

extremely disappointed, but believe it worked out best for her, as

she immediately got on the phone to Dr. Bihari and has an interview

on Monday. He is more expensive, but is the " expert " , so some of you

may want to consider giving him a call. Also, has anyone tried

systemic enzyme therapy for MS? I'm reading many good things about

it but wonder if someone has experience especially for

exacerbations. Has the serrapeptase helped those of you taking it?

Thank you all for your valuable links to such good information and I

follow with interest your posts re: ldn. My daughter and I are

hoping it will stop the progression of her MS and will keep you all

in our prayers, as we hope you keep her in yours. Her name is

and she lives in CA. first exhibited symptoms about 11 yrs ago,

but no definite diagnosis, til this year. She used Colloidal Silver

for a year with very little results. I am a believer in CS, but it

can't cure what it can't reach and MS is so different with each

person. Tried Avonex, but made her much worse, then we found the ldn

site. Thank you all for your support of each other and us as we wade

thru all the info out there.

December 31, 2004