Questions

May 22, 2009

Im am now learning about NIds. I have ?'s

1. To all the people who child has had a neuro spec scan, what does it show?

2. Do you get all the blood work he suggests 1st and if only they are abnormal

you go see him then?

3. Does the office schdule the scan for you. Can it usually be the same day or

the following. What places did you have the scans done?

4. Im planning for just myself and my son to go b/c of our other child and the

expense b/c we live in Ohio.

Thanks you any input

May 22, 2009

Hi -

1) A couple thousand scans have been done in the last ?10+ years on the same

machine and studied, and there is a published paper from Dr Goldberg and Dr Mena

- you can access it on (can't remember which) either www.neuroimmunedr.com or

www..net. Biggest findings are hypoperfusion (reduced blood flow) in the

frontal and temporal lobes. Often hyperfusion (too much blood flow) in other

areas when symptoms of OCD and anxiety and ADD are present. There are also

scans showing the improvements in the brain coinciding w/treatment and the

child's functioning, but I don't know if that's published in the paper. Also,

the scans show that Chronic Fatigue Syndrome and Autism look alike, only the age

of onset is different. That is why the CFS protocol (researched over 25 years

and many things already tried) is so effective in .

2: You can have all the lab work done. However, you will frequently not find

any outright abnormalities, or the patterns and elevations (or low results) here

or there don't mean much in the mainstream diagnostics, but there are common

patterns and findings that will point to the dysfunction. There are so many

that I can't list them all, but you can post lab results and discuss them.

Often things will look outright normal. My oldest son's pretty much were

normal. His viral titers didn't even go up until a year+ on antivirals, but it

did not mean he didn't have the virus. In fact, it is the absence of any

'universal' findings that have made CFIDS research so difficult for the last 25

years. The knowledge and technology have not even been in place.

3: Most people don't get the scans anymore until after they have been on meds

maybe a year (usually a lot longer) and have concerns that aren't getting

addressed. Many don't have scans for two years - most don't have them at all.

Some people do go to the spect clinics and THEN get referred to Dr Goldberg, but

I would say that a scan in the beginning is wasted money and pretty much going

to have absolutely no impact on the initial year plus of treatment. The only

value I can think of is to have a convincing image for yourself (but none are

the same and it doesn't " prove to the world " that a child has - just proves

the findings we already know about are present), and the other 'plus' would be

having another one in a couple of years and seeing the progress. Now THAT would

be cool. But is it worth the stress when a child isn't yet functioning well and

doesn't understand yet? (They probably do a lot better in a year or two.) Is

it worth

sedation? It really has almost no value in the beginning. The reason Dr

Goldberg shows them in his presentations is it is the most significant tool for

research and showing the progress that treatment does. It is helpful later in

treatment if a child is having complex reactions to SSRIs and other meds or just

is not brightening up the way it was expected.

Unless you just have loads of extra cash, I would save your money and not do the

spect ($2000+), and instead save those resources to apply to treatment. Phone

consults cost about $185? every 4 weeks at first (then sometimes spread to 6

weeks when doing well). Rxs are usually covered pretty well by BC but you could

have several copays. If you could pay for a spect, you may wish to take your

other child for " a look see " just to be an established patient and a short work

up to see if he or she is doing as well as you'd like. A lot of siblings have

some mild issues that can be helped too, even if only by monitoring diet and

being aggressive about treating illnesses.

4) There are occasionally resources for flights for medical travel. Some have

some tight restrictions and most of us wouldn't qualify, and a lot get used up

quickly. But it's worth looking into - you can search in the group's

previous posts for the topic but I can't remember how it's worded. I'm sure

someone else could.

HTH-

________________________________

From: neidhardtashley <neidhardtashley@...>

Sent: Friday, May 22, 2009 1:34:45 PM

Subject: Questions

Im am now learning about NIds. I have ?'s

1. To all the people who child has had a neuro spec scan, what does it show?

2. Do you get all the blood work he suggests 1st and if only they are abnormal

you go see him then?

3. Does the office schdule the scan for you. Can it usually be the same day or

the following. What places did you have the scans done?

4. Im planning for just myself and my son to go b/c of our other child and the

expense b/c we live in Ohio.

Thanks you any input

May 23, 2009

-Great post and wonderful job of explaining the illness! Do you have

more than one child on the spectrum?

Questions

Im am now learning about NIds. I have ?'s

1. To all the people who child has had a neuro spec scan, what does it show?

2. Do you get all the blood work he suggests 1st and if only they are abnormal

you go see him then?

3. Does the office schdule the scan for you. Can it usually be the same day or

the following. What places did you have the scans done?

4. Im planning for just myself and my son to go b/c of our other child and the

expense b/c we live in Ohio.

Thanks you any input

May 23, 2009

Hi ,

Your experience with your children is very interesting. Would you mind

sharing how were your children's Immune Panel numbers just before stopping

the medications? Specially the Natural Killer Cell absolute and percentage

counts? I am curious, because if the Immunovir can really increase Natural

Killer Cell activity at least in theory our children's bodies should be more

cable of keeping viral and other kind of infections under control. And they

would not regress when the medications are stopped.

Thanks,

JR

From: [mailto: ] On Behalf Of

Sent: Saturday, May 23, 2009 8:21 PM

Subject: Re: Questions

Glad it could help. Re more than one child ... sort of. My oldest is

Asperger-ish but really I'm beginning to believe that is mostly gone and

behaviors and delayed social skills (definitely not absent) and some

negative social perception are his primary problems remaining. His CARS

rating, done soon after starting the protocol, was in the middle of moderate

to severe range. They did it twice, because they were having a hard time

believing the results, even did them with my input removed, because he had

already started the protocol and had improved so drastically.

My second son started meds at 18 months. Dr Goldberg always said he would

have been much worse off than his big brother, but I got him off milk by 9

months and started dropping and delaying vaccines due to severe reactions

(screaming 8 hours and seizures after the DTaP and DT, loss of gross motor

skills after the polio). His labs were a lot worse off than his big

brother's, but the triggers kept him from getting pushed over the edge.

After almost 3 years on meds, he had been typically developing as far as I

could tell, though a bit spacey and OCD. But he had pretty typical social

skills etc. We had to stop the protocol due to sudden financial reasons,

and he was still good for about 9 months. Then about 3 months after that,

he went into a full-blown CFIDS episode, which improved drastically about 6

months later after spiking 106.9 fever, then fell back again a few months

after that. During the last two years, he really lost a lot of ground

and developed obvious cognitive problems, mainly expressive and receptive

language processing and behavioral and social delays. He started meds again

in September and he is improving, but he has a long ways to go. I heard

later that it seems the " window " after stopping antivirals is about 9

months.

Dr G had said that he felt that we had seen what we wanted w/my oldest son

(but he is improving better again now that he's on meds but I couldn't tell

he 'needed' them before starting), but he had said that we had not found the

missing piece yet for my youngest. He was definitely right. I'm very

grateful that he had the opportunity to be on meds before we ever found out

just how sick he was. I can't go back and change that he came off the meds

- I can only trust what I've seen them do in the past and hope that we get

" it " this time.

That was a lot more than you asked me! lol

________________________________

From: " gvizjazz@... <mailto:gvizjazz%40aol.com> " <gvizjazz@...

<mailto:gvizjazz%40aol.com> >

<mailto:%40>

Sent: Saturday, May 23, 2009 11:32:12 AM

Subject: Re: Questions

-Great post and wonderful job of explaining the illness! Do you

have more than one child on the spectrum?

Questions

Im am now learning about NIds. I have ?'s

1. To all the people who child has had a neuro spec scan, what does it show?

2. Do you get all the blood work he suggests 1st and if only they are

abnormal you go see him then?

3. Does the office schdule the scan for you. Can it usually be the same day

or the following. What places did you have the scans done?

4. Im planning for just myself and my son to go b/c of our other child and

the expense b/c we live in Ohio.

Thanks you any input

May 24, 2009

Hi,

I don't have the exact numbers available, but I remember that my oldest son's

(who did well) NK's were 15% (although I don't think they were very low to begin

with), and my youngest son's were only 8% (still in the range that would be

acceptable) but I think his had started out around 2-3%. Now my youngests are

back to 3% but his brother's are still around 15% if I remember correctly.

________________________________

From: <jrodrig6605@...>

Sent: Saturday, May 23, 2009 10:56:01 PM

Subject: RE: Questions

Hi ,

Your experience with your children is very interesting. Would you mind

sharing how were your children's Immune Panel numbers just before stopping

the medications? Specially the Natural Killer Cell absolute and percentage

counts? I am curious, because if the Immunovir can really increase Natural

Killer Cell activity at least in theory our children's bodies should be more

cable of keeping viral and other kind of infections under control. And they

would not regress when the medications are stopped.

Thanks,

JR

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Sent: Saturday, May 23, 2009 8:21 PM

groups (DOT) com