Re: Re: Jackie::RE:Goldberg

[Guest guest]

Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg

Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of

Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify

and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency

many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg

Jackie, Thrilled to hear about your son's progress! SO happy for you guys.

best, sloan

> > > > > >

> > > > > > Here is a question maybe someone has an answer to:

> > > > > >

> > > > > > Some have argued that HBOT is dangerous because while it increases the flow

> > > > >of

> > > > >

> > > > > > oxygen to areas of the brain that need it, it also increases the flow of

> > > > >oxygen

> > > > >

> > > > > > to areas that do NOT.

> > > > > >

> > > > > > SSRI's are used in this instance to increase bloodflow to certain areas of

> > > > >the

> > > > >

> > > > > > brain. It is able to "weed out" exactly which areas to avoid? (unlike

> > > > > > hbot)?????

> > > > > >

> > > > > > Is that correct?

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > ________________________________

> > > > > > From: "boothlindy@" <boothlindy@>

> > > > > > To: mb12 valtrex

> > > > > > Sent: Fri, August 13, 2010 2:16:17 PM

> > > > > > Subject: RE:Goldberg

> > > > > >

> > > > > >

> > > > > > I am a mother of a 5 year old daughter who has just started (3 months in) the

> > > > >

> > > > > > NIDS protocol with Dr Goldberg. We worked with 2 DAN doctors for 1.5 years

> > > > >with

> > > > >

> > > > > > good results but hit a wall so to speak.

> > > > > >

> > > > > >

> > > > > > When I wanted to try the virus protocol our DAN said OK gave us the meds a

> > > > >piece

> > > > >

> > > > > > of paper with the info and said to us not much has been done in the virus

> > > > >area

> > > > >

> > > > > > by the medical establishment and it does not work for most kids. Something

> > > > >felt

> > > > >

> > > > > > wrong with her statement so I joined this site and was led to Dr Goldberg by

> > > > >a

> > > > >

> > > > > > passionate mom (Marcia).

> > > > > >

> > > > > > That said when we first had our appt. I was somewhat taken aback by his take

> > > > >on

> > > > >

> > > > > > DAN being the 'bad guys'. He went on about it for a little too long for my

> > > > > > liking ... DAN was there for us when everybody else was saying go home and

> > > > > > accept that is how your daughter is going to be. My 'bad guys' were the

> > > > >standard

> > > > >

> > > > > > medical guys pushing the vaccines on my child with a severely and visible

> > > > > > compromised immune system. I had to cut him short and say lets get back to

> > > > >what

> > > > >

> > > > > > we came for, my fight is not with DAN but with healing my child. DAN bashing

> > > > >as

> > > > >

> > > > > > I call it feels decidely uncomfortable for me, especially as they recovering

> > > > >a

> > > > >

> > > > > > lot of of children, yes I do feel like because DAN are trying so many bases

> > > > > > gut/metals/viral etc the doctors can throw a lot of things at us and for

> > > > >those

> > > > >

> > > > > > of us struggling to study and grasp all the info out there we can tend to

> > > > >rely

> > > > >

> > > > > > heavily on them for it all, hence over supplementing with the fear we are

> > > > > > missing something or if we remove some they regress after all our hard won

> > > > > > gains. I also think some of the DAN's are overloaded and good follow up

> > > > > > proceedures are lacking in their offices. NIDS protocol does not spread

> > > > >itself

> > > > >

> > > > > > so thin.

> > > > > >

> > > > > > That said Dr Goldberg is a doctor who takes healing your child seriously,

> > > > >very

> > > > >

> > > > > > prepared and is not afraid to speak his mind and offend. I have accepted this

> > > > >as

> > > > >

> > > > > > part of the deal working with him (who wants a wishy washy doctor healing

> > > > >your

> > > > >

> > > > > > child anyway). He is always prepared for our telephone consults, knows my

> > > > > > daughter history, and kicks my butt when I was too scared to start the SSRI'

> > > >

> > > > > > saying I am here to try and heal your child lets not waste time (my

> > > > >words...his

> > > > >

> > > > > > were stronger).

> > > > > >

> > > > > > I think for many passionate caring doctors who have had great success in

> > > > >their

> > > > >

> > > > > > specific protocols they feel strongly they can take ALL our children to

> > > > > > recovery. Having read many a post on many a site I now know this is not so.

> > > > >Our

> > > > >

> > > > > > children are all so different and their issues so variable it indeed may take

> > > > >

> > > > > > one to many more protocols to get there.

> > > > > >

> > > > > >

> > > > > > Suffice to say we as parents have to stay on our toes and know when to stay

> > > > >and

> > > > >

> > > > > > when to move on (Cheryl's advice to me...thks)....the hard part is knowing

> > > > >what

> > > > >

> > > > > > to do when we are not doctors, just parents with a powerful love in our

> > > > >hearts

> > > > >

> > > > > > to heal our kids and see them flourish in this world.

> > > > > >

> > > > > > Lindy

> > > > > >

> > > > > > PS. We have been on the SSRI's for 9 days and the results have been nothing

> > > > > > short of amazing for my daughter. We are holding our breaths as we saw

> > > > >similar

> > > > >

> > > > > > results with HBOT which did not hold. Right now I am glad Dr G kicked my

> > > > >butt.

> > > > > >

> > > > >

> > > >

> > >

> >

>