Re: Confused over reaction to antivirals

July 17, 2000

Hi,

Any med that has effects against an infection is going to make him worse for

a period of time. The only way to tell if the med is a problem also, is if

you don't see some sort of improvement within 4-6wks(?) I think the first

antiviral we tried on my younger son, was a problem. He improved on both

Valtrex (with dye washed off) and Famvir. When he was first on Famvir, I

thought he might be sensitive to the med itself. It took about a month

before he was doing better. I think it was kicking up some virus that maybe

the Valtrex was ineffective for.

My younger son used to have alot of angry aggressive behavior, which always

gets worse during any type of die-off. I also have a teen with . He is

a very calm person normally, not short tempered and irritable. I know that

he has told me during dieoff that his emotions are really off. He feels

much more irritable and upset about things.

My younger son was allowed a one time dietary cheat on his birthday. He ate

the one thing that he really misses, which is pizza. That night he was

almost what I would describe as manic. He couldn't sleep and ended up on

our bedroom floor around 3:30 a.m. He couldn't stop talking and couldn't

sleep. When my husband got up at 4:00, he got back up too. I think it was

around 7:00 a.m. when he finally dozed off in front of the T.V.

This happened in a child who has been functioning really well. So, I am not

surprised that your son is having sleep changes when you are starting to

stir things up.

Hang in there. I know it is really hard when they are going through an

increase in symptoms. Until we have access to better meds, we just have to

take this step by step.

Cheryl

> Hello everyone,

> I'm new to the group and to Dr. Goldberg's services. My son, 3

> l/2yrs, started with Dr. Goldberg in early June with a prescription

> for Valtrex. We thought he was calmer and a tiny bit more focused

> the

> first week but then the second week was bad. He became very

> self-stimulatory and agitated. Dr. G. advised switching him to

> Famvir. I actually think was improving just before we

> switched but we went ahead with the Famvir. Last week (first week of

> Famvir) we didn't notice much except for a decrease in need for sleep

> and the continued self-stimulatory behavior. This week is rough and

> why I am writing to this group. He is laughing inappropriately at

> nothing and seems pretty out of it. His stimming just isn't getting

> any better and today at school he was agressive- tried to bite and

> scratch a few people. This is just not my son (he's always been

> very sweet natured and cooperative) and it's breaking my heart. Of

> course this will all be reported to Dr. G but I also wanted to

> present

> it to this group. Does this sound like die-off or a negative

> reaction

> to the meds? How does one tell? Thank you so much in advance for

> any

> replies. I feel very sad about this, we were so looking forward to

> trying this regime.

> Fiona

July 21, 2000

Fiona,

it sounds just like die off. We've been through it with my daughter.

Sometimes it lasts her a month! But the results are worth going through it.

Not only for her behaviors, etc., but her body is healthier. I am in the

same meds for CFS. I have experience die off too, and its not fun. BUT, it

is so worth it!

Good luck,

Tina Hendrix

July 21, 2000

Tina,

Are you in touch with a lot of California families? Kathy

July 21, 2000

Hi Fiona - My daughter also became more " aggressive " and slept less with the

anti-virals. Where before she was never aggressive, she will now pinch people

when she's angry (not too often, thankfully). Her stims haven't improved

either. Also, she goes to bed between 10 and 11 now - used to be 8:00. I

don't know the reasons for this, and I can't really get a good answer from

Dr. G. Maybe someone else can tell us?

July 21, 2000

Hi

My son was very bad for 3 weeks when we started on Vultrex. But after

that he became more focused on his tasks. better attention span better

eye-contact. So hang in there mom and be patient. Their little body is

so messed up they need all the medical help we can give them.

Mercy

July 22, 2000

http://www.neuroimmunedr.com//Proposed_Work-Up_/proposed_work-up_nid

s.html

> Hi. I tried this website and nothing happens, or it gives me a list that

has

> nothing to do with Goldberg! Help!!

If the link still doesn't work, you can go to the main website and click on

, then go to where it says you can click for proposed work-up for .

www.neuroimmunedr.com

July 22, 2000

Mercy, I am very curious why the doctor prescribed Vultrex. Was there a test

that showed that your child had a viral condition? Thanks,

July 23, 2000

Dear

Yes, when we did the blood work it showed that he had some kind of

viral infection. I also noticed that he use to have lots of canker

sores in his mouth, red lips and a redness all around his mouth. This is

usually an outside marker for viral infections. The sleepless nights

went on for months before he took the vultrex. It got worse with it to

the point where I had to give advil for his headaches. One month later

he was sleeping through the night.

His cheeks were very flushed and his eyes had dark circles. This is a

sign for allergies and the dark circles could be for viral infection and

lack of rest.

His little bottom (He was in diapers then) would bleed from rash and the

pediatrician said just use whatever. She never said stop the milk, stop

the bottle which is a big contribution to yeast. By the time he was 30

months old he lost his speech, lost his gross and fine motor skills and

was as a seven months old.

When he turned four years old Dr G started the med. First came the

diflucan and the diet, then came the vultrex, and last came the Prozac.

I should say that six months later when we potty trained, he was dry day

and night in less than 3 weeks. Getting up at night going to the potty

and going back to sleep. This is a child where the " experts " said he

will need to go to an institution because on top of his autism he also

has mental retardation.

This is a child whom by God's grace and only for His glory turned 7 and

was home schooled last year almost finishing Kindergarten, works on the

computer beautifully, and steals everybody's heart. He is very

intelligent, non verbal, loves hugs and kisses and when we go out nobody

can tell that he is a child. I am attempting to teach sign language

+ speech to give him an alternative. People accept him as language

delayed and no questions are asked. I give God the glory for every step

of improvement he has made. I also know that put Dr. G in our life for a

purpose.

I did not mean to rattle on and on but I hope it will be an

encouragement for someone.

In His Service and God bless

Mercy.

July 24, 2000

Mercy, first of all, thanks for " rattling on " . It gave me that much more

confidence! I am so happy that you got as far as you did with everything that

you had done for your child-it certainly has been paying off! We found out

that Richie was autistic from around 3. Finally, we found someone who agreed

with us- this was crucial down the road because I finally had enough to prove

that he needed an ABA program which started a month ago.His nutrition also

started around the same time Most of his bloodwork came back normal. Yes

,they said he had slight yeast, casein intolerant only, slight lead{very

important to detect}, slight deficiencies in vitamins{we all suspected that

since he is a horrible eater} and hypothyroidism{very common among these

kids-slight} I don't understand why the endocrinologist is not alarmed- he

does not want to treat- it was so slight it could have been a lab error.

Anyway, I am doing more research to see what I can do to help his thyroid

nutritionally. He also had some malabsorbtion-not yet a leaky gut. The

nutritionist was very pleased with these results .He gave us the diet and

also a very good vitamin supplement that will excrete the bad stuff and

replenish the good. He is on yeast avenger with acidophilus, dmg, and evening

primrose. My 4 year old seems to be more focused , happier, and his sleeping

is much better. His teachers are doing miracles with him. The reason why I

am babbling to you is that I feel that I should be doing more-I would assume

that his bloodwork would have showed some viral activity,right? Did you ask

for a specific test? If you don't mind-were there any other tests that you

think I should be doing? Lastly, both of our pediatricians were not as

updated as I thought they should have been- the last one was not even

open-minded with the vaccination linkage. I have a 15 month old who I am

going to try to protect with the knowledge that I have now, so I will be

interviewing our third pediatrician this coming week to see how thorough they

are in autism. I just can't stand when they tell you thatyou are

overreacting. Sorry for chewing your ear off!

July 24, 2000

Why are you not taking him to Dr. Goldberg? Kathy r

July 24, 2000

Dear

Pediatricians do not know any thing. In my humble opinion all medical

profession have not even scratched the surface of how the brain, the

body, the immune system are connected. One pediatrician in thousands

will lend an ear. And you will be fortunate to find one. I have been

blessed with one that goes to our church. His wife his a nurse and from

the beginning they have followed and agreed on everything regarding my

son. Their support stems from their faith and the doctor has been more

than happy to order blood work or medication that Dr. Goldberg

prescribes. Actually he went as far as reading books that I recommended.

Did you ask Dr. G about immunization for your baby? He is pretty good at

setting a schedule for that He even may order some blood work for your

baby to check before any immunization shots are given.

As for the viral infection, the test is for HHV6 titer, Herpes IGG, I

and II., EBV IGG and IGM (Epstein-barr virus), Rubella IgG, Chicken pox,

and I am sure there are more. Dr. G should be able to tell you which

one.

Have you done the blood work with Dr. G yet?

I do not remember which mom had her son get over Roseola recently but

did you know that it is caused by HHV6?

I have done the blood work, ABA to the best we can do and the diet. I

probably could have seen better results if I had more support from the

family. They cheat on the diet left and right. It takes the body 8

months to get rid of the gluten. A whole year to get rid of casein. So

you can imagine what a little cheat here and there can set the body

backward. But once you have been rigid for a couple of years then you

can experiment with cheating. I have been successful doing that with soy

and now I can cheat once a week and he is fine.

I hope I have answered some of your questions and helped you ask some

new questions. If you don't ask you will not get an answer and I have

learned to ask till the person answers just to get rid of me.

Take care. Mercy

July 24, 2000

I Know that Goldberg is in California, but I know my son won't tolerate the

flight. I also know that there are doctors out there who are willing to try

out his protocol if they knew what it was. Not that I am putting my eggs in 1

basket, but I want to trust his nutritionist for now. I will mention the

tests that you sent me. Could you remember any others ? When Richie gets a

follow up bloodwork, I will force the issue, but I would like to know all the

tests so he can get them all . Any info on Goldgerg and his protocol is

appreciated. Mercy, it's so funny how the more one thinks they know, the more

they need to know.

July 25, 2000

Go to Dr. G's site

http://www.neuroimmunedr.com//Proposed_Work-Up_/proposed_work-up_nids.ht\

ml to see the entire workup.

The Research Institute will be growing shortly; Where in the country are

you??