Re: hi does anyone get vsl#3 on private prescription - Joanne

July 22, 2010

I'm sorry to jump in, Joanne can I ask what the VSL3 is prescribed to

treat in your son's case, I hope you don't mind me asking? It would be

great if I could get my GP to prescribe this.

thanks,

emily

> >

> > I looked in a few books last night

> >

> > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all recommend

> this Vitmain A protocol but they tend to say you need to say yes to 3

> out of the following 5:

> >

> > 1. Issues aftter MMR

> > 2. Ongoing gut problems

> > 3. Even slightly elevated IgG

> > 4. Autoimmune to myelin

> > 5. Measles in ileum

> >

> > ** Ive answered yes to the 1st 2. How can i tell if ive got elevated

> IgG? Would that be my requirement for gf/cf diet?

> > Im also seriously considering doing this.

> > --

> > is

> >

> > Get a new e-mail account with Hotmail - Free. Sign-up now.

> >

> > _________________________________________________________________

> > http://clk.atdmt.com/UKM/go/197222280/direct/01/

> > Do you have a story that started on Hotmail? Tell us now

> >

>

July 22, 2010

I'm sorry to jump in, Joanne can I ask what the VSL3 is prescribed to

treat in your son's case, I hope you don't mind me asking? It would be

great if I could get my GP to prescribe this.

thanks,

emily

> >

> > I looked in a few books last night

> >

> > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all recommend

> this Vitmain A protocol but they tend to say you need to say yes to 3

> out of the following 5:

> >

> > 1. Issues aftter MMR

> > 2. Ongoing gut problems

> > 3. Even slightly elevated IgG

> > 4. Autoimmune to myelin

> > 5. Measles in ileum

> >

> > ** Ive answered yes to the 1st 2. How can i tell if ive got elevated

> IgG? Would that be my requirement for gf/cf diet?

> > Im also seriously considering doing this.

> > --

> > is

> >

> > Get a new e-mail account with Hotmail - Free. Sign-up now.

> >

> > _________________________________________________________________

> > http://clk.atdmt.com/UKM/go/197222280/direct/01/

> > Do you have a story that started on Hotmail? Tell us now

> >

>

July 22, 2010

Hi ,

not Joanne, but i did read recently on another forum that some adults are

getting it prescribed for Irritable Bowel disorder.

I would also be interested in how Joanne managed to get it prescribed for her

child as i have intentions to tackle my GP about this also to see if i could get

it on the nhs for ds.

Joanne, how did you do it please.....???

Nikki x

> > >

> > > I looked in a few books last night

> > >

> > > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all recommend

> > this Vitmain A protocol but they tend to say you need to say yes to 3

> > out of the following 5:

> > >

> > > 1. Issues aftter MMR

> > > 2. Ongoing gut problems

> > > 3. Even slightly elevated IgG

> > > 4. Autoimmune to myelin

> > > 5. Measles in ileum

> > >

> > > ** Ive answered yes to the 1st 2. How can i tell if ive got elevated

> > IgG? Would that be my requirement for gf/cf diet?

> > > Im also seriously considering doing this.

> > > --

> > > is

> > >

> > > Get a new e-mail account with Hotmail - Free. Sign-up now.

> > >

> > > _________________________________________________________________

> > > http://clk.atdmt.com/UKM/go/197222280/direct/01/

> > > Do you have a story that started on Hotmail? Tell us now

> > >

> >

>

July 22, 2010

Hi ,

not Joanne, but i did read recently on another forum that some adults are

getting it prescribed for Irritable Bowel disorder.

I would also be interested in how Joanne managed to get it prescribed for her

child as i have intentions to tackle my GP about this also to see if i could get

it on the nhs for ds.

Joanne, how did you do it please.....???

Nikki x

> > >

> > > I looked in a few books last night

> > >

> > > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all recommend

> > this Vitmain A protocol but they tend to say you need to say yes to 3

> > out of the following 5:

> > >

> > > 1. Issues aftter MMR

> > > 2. Ongoing gut problems

> > > 3. Even slightly elevated IgG

> > > 4. Autoimmune to myelin

> > > 5. Measles in ileum

> > >

> > > ** Ive answered yes to the 1st 2. How can i tell if ive got elevated

> > IgG? Would that be my requirement for gf/cf diet?

> > > Im also seriously considering doing this.

> > > --

> > > is

> > >

> > > Get a new e-mail account with Hotmail - Free. Sign-up now.

> > >

> > > _________________________________________________________________

> > > http://clk.atdmt.com/UKM/go/197222280/direct/01/

> > > Do you have a story that started on Hotmail? Tell us now

> > >

> >

>

July 22, 2010

Nikki and It was about three years ago when I went to see my GP (a new one I hadn't seen before) and asked if she would give me a private prescription for VSL#3 sachets (I didn't realise then that the capsules are better because more pure). To my amazement, she offered to prescribe them on the NHS!When I moved to a different area a couple of years ago, I thought I might have difficulties getting VSL from my new GP, so I told my son's gastro that I felt he was doing well on it, and said I was worried in case the new doctor might not agree to prescribe. The gastro agreed to write a letter to my GP recommending that the prescription be continued, which swung it for me.If you've got a sympathetic GP, it's worth trying to get it on prescription. It's much easier to get the sachets because they're on the GP's prescription list, unlike the capsules. I managed to get the GP to switch the prescription to capsules when I realised how much better they are. If your child sees a gastro, you could try to persuade them to write a letter to your GP recommending a prescription for VSL - they might be prepared to do that, as it's the GP's practice that will pay for it, not the gastro!Joanne> > > >> > > >> > > >> > > >> > > > I looked in a few books last night> > > >> > > > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all recommend> > > this Vitmain A protocol but they tend to say you need to say yes to 3> > > out of the following 5:> > > >> > > > 1. Issues aftter MMR> > > > 2. Ongoing gut problems> > > > 3. Even slightly elevated IgG> > > > 4. Autoimmune to myelin> > > > 5. Measles in ileum> > > >> > > >> > > > ** Ive answered yes to the 1st 2. How can i tell if ive got elevated> > > IgG? Would that be my requirement for gf/cf diet?> > > > Im also seriously considering doing this.> > > > --> > > > is> > > >> > > >> > > >> > > >> > > >> > > >> > > > Get a new e-mail account with Hotmail - Free. Sign-up now.> > > >> > > >> > > >> > > >> > > > _________________________________________________________________> > > > http://clk.atdmt.com/UKM/go/197222280/direct/01/> > > > Do you have a story that started on Hotmail? Tell us now> > > >> > >> >>

July 22, 2010

Thanks for the reply Joanne.

I'll try GP, she's sympathetic and tries to help but not the other

doctors in the practice. I'm hoping they will sympathise here, for the

reason that the PCT turned down prescription for ds' P5P although it is

the only treatment that has been effective for his severe epilepsy and

which the paediatrician and neurologist requested be prescribed.

emily

> > > > >

> > > > > I looked in a few books last night

> > > > >

> > > > > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all

> recommend

> > > > this Vitmain A protocol but they tend to say you need to say yes

> to 3

> > > > out of the following 5:

> > > > >

> > > > > 1. Issues aftter MMR

> > > > > 2. Ongoing gut problems

> > > > > 3. Even slightly elevated IgG

> > > > > 4. Autoimmune to myelin

> > > > > 5. Measles in ileum

> > > > >

> > > > > ** Ive answered yes to the 1st 2. How can i tell if ive got

> elevated

> > > > IgG? Would that be my requirement for gf/cf diet?

> > > > > Im also seriously considering doing this.

> > > > > --

> > > > > is

> > > > >

> > > > > Get a new e-mail account with Hotmail - Free. Sign-up now.

> > > > >

> _________________________________________________________________

> > > > > http://clk.atdmt.com/UKM/go/197222280/direct/01/

> > > > > Do you have a story that started on Hotmail? Tell us now

> > > > >

> > > >

> > >

> >

>

July 23, 2010

Good luck , I hope you get it. It's terrible that the PCT turned down the P5P prescription when it had been requested by the specialists. I don't think the PCT will need to be involved in the decision to prescribe VSL as the sachets are on the GP's list. Does your son see a gastro? It might help if you can get a letter from him / her.Joanne> > > > > >> > > > > >> > > > > >> > > > > >> > > > > > I looked in a few books last night> > > > > >> > > > > > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all> > recommend> > > > > this Vitmain A protocol but they tend to say you need to say yes> > to 3> > > > > out of the following 5:> > > > > >> > > > > > 1. Issues aftter MMR> > > > > > 2. Ongoing gut problems> > > > > > 3. Even slightly elevated IgG> > > > > > 4. Autoimmune to myelin> > > > > > 5. Measles in ileum> > > > > >> > > > > >> > > > > > ** Ive answered yes to the 1st 2. How can i tell if ive got> > elevated> > > > > IgG? Would that be my requirement for gf/cf diet?> > > > > > Im also seriously considering doing this.> > > > > > --> > > > > > is> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > > Get a new e-mail account with Hotmail - Free. Sign-up now.> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > _________________________________________________________________> > > > > > http://clk.atdmt.com/UKM/go/197222280/direct/01/> > > > > > Do you have a story that started on Hotmail? Tell us now> > > > > >> > > > >> > > >> > >> >>

July 23, 2010

Hi Joanne

I wonder who your gastro is. It is not DR Fell in London, is it? I am asking because I have tried to get VSL with my local GP with no luck, but I never tried my gastro as I assumed it would be a waste of time and he would also say "No". Thank you for sharing your experience.

All the best

Vilma

In a message dated 07/23/10 00:30:39 GMT Daylight Time, emilyscorer@... writes:

Thanks for the reply Joanne. I'll try GP, she's sympathetic and tries to help but not the other doctors in the practice. I'm hoping they will sympathise here, for the reason that the PCT turned down prescription for ds' P5P although it is the only treatment that has been effective for his severe epilepsy and which the paediatrician and neurologist requested be prescribed. emily > > > > > > > > > > > > > > > > > > > > > > > > > I looked in a few books last night > > > > > > > > > > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all > recommend > > > > this Vitmain A protocol but they tend to say you need to say yes > to 3 > > > > out of the following 5: > > > > > > > > > > 1. Issues aftter MMR > > > > > 2. Ongoing gut problems > > > > > 3. Even slightly elevated IgG > > > > > 4. Autoimmune to myelin > > > > > 5. Measles in ileum > > > > > > > > > > > > > > > ** Ive answered yes to the 1st 2. How can i tell if ive got > elevated > > > > IgG? Would that be my requirement for gf/cf diet? > > > > > Im also seriously considering doing this. > > > > > -- > > > > > is > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Get a new e-mail account with Hotmail - Free. Sign-up now. > > > > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > > > > http://clk.atdmt.com/UKM/go/197222280/direct/01/ > > > > > Do you have a story that started on Hotmail? Tell us now > > > > > > > > > > > > > > > ------------------------------------ DISCLAIMER No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

July 23, 2010

, I am very sorry to hear this.

I would really appreciate you writing this up in a letter for Treating Autism if

you have time. I am not sure what the PCT is, having never used the UK system

for treatments, but I am horrified that ANYONE can reject what has been

suggested by the Paed and Neurologist.

If anyone has experienced similar outrages, please do consider documenting these

and sending them to me to be used by Treating Autism in our campaigns for better

medical treatments for our children. You can remain anonymous in the letters

should you prefer, but it is best to give as many other details as possible.

You can send them to treatingautismUK @ aol.com or to my private email

mysuperteach @ hotmail.com (without spaces).

Again, I am so sorry to hear this . I cannot believe this sort of thing

happens--it is criminal.

Anita

> > > > > >

> > > > > > I looked in a few books last night

> > > > > >

> > > > > > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all

> > recommend

> > > > > this Vitmain A protocol but they tend to say you need to say yes

> > to 3

> > > > > out of the following 5:

> > > > > >

> > > > > > 1. Issues aftter MMR

> > > > > > 2. Ongoing gut problems

> > > > > > 3. Even slightly elevated IgG

> > > > > > 4. Autoimmune to myelin

> > > > > > 5. Measles in ileum

> > > > > >

> > > > > > ** Ive answered yes to the 1st 2. How can i tell if ive got

> > elevated

> > > > > IgG? Would that be my requirement for gf/cf diet?

> > > > > > Im also seriously considering doing this.

> > > > > > --

> > > > > > is

> > > > > >

> > > > > > Get a new e-mail account with Hotmail - Free. Sign-up now.

> > > > > >

> > _________________________________________________________________

> > > > > > http://clk.atdmt.com/UKM/go/197222280/direct/01/

> > > > > > Do you have a story that started on Hotmail? Tell us now

> > > > > >

> > > > >

> > > >

> > >

> >

>

July 23, 2010

VilmaI've emailed you off list about this.Joanne > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I looked in a few books last night > > > > > > > > > > > > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all > > recommend > > > > > this Vitmain A protocol but they tend to say you need to say yes > > to 3 > > > > > out of the following 5: > > > > > > > > > > > > 1. Issues aftter MMR > > > > > > 2. Ongoing gut problems > > > > > > 3. Even slightly elevated IgG > > > > > > 4. Autoimmune to myelin > > > > > > 5. Measles in ileum > > > > > > > > > > > > > > > > > > ** Ive answered yes to the 1st 2. How can i tell if ive got > > elevated > > > > > IgG? Would that be my requirement for gf/cf diet? > > > > > > Im also seriously considering doing this. > > > > > > -- > > > > > > is > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Get a new e-mail account with Hotmail - Free. Sign-up now. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > > > > > http://clk.atdmt.com/UKM/go/197222280/direct/01/ > > > > > > Do you have a story that started on Hotmail? Tell us now > > > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > DISCLAIMER > No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner. >

July 23, 2010

Hi Anita,

I would be more than happy to do it, does it have to be in letter form

to TA or can I just send you an email?

I think GP's fall under the PCT and/or their budget (someone else may be

able to clarify this!). The PCT is the Primary Care Trust and the GP

had to go to a panel meeting to get the P5P approved specially, as it is

not on the list of prescribable meds, Vit B6 is prescribable but

Norman's seizures do not respond to it, so it doesn't help.

Yes it is quite sad really, that the only treatment Norman has responded

to and had some control from, was turned down. Before this my GP was

very confident that it would get approved as she felt that the cost of

it was not unreasonable compared to the countless drugs out there which

cost so much and she said the practise had patients who were being

prescribed extremely expensive drugs, so the P5P shouldn't be a problem

(especially as they had tried numerous AED's without any success! ).

Will email you separately.

emily

> > > > > > >

> > > > > > > I looked in a few books last night

> > > > > > >

> > > > > > > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all

> > > recommend

> > > > > > this Vitmain A protocol but they tend to say you need to say

yes

> > > to 3

> > > > > > out of the following 5:

> > > > > > >

> > > > > > > 1. Issues aftter MMR

> > > > > > > 2. Ongoing gut problems

> > > > > > > 3. Even slightly elevated IgG

> > > > > > > 4. Autoimmune to myelin

> > > > > > > 5. Measles in ileum

> > > > > > >

> > > > > > > ** Ive answered yes to the 1st 2. How can i tell if ive

got

> > > elevated

> > > > > > IgG? Would that be my requirement for gf/cf diet?

> > > > > > > Im also seriously considering doing this.

> > > > > > > --

> > > > > > > is

> > > > > > >

> > > > > > > Get a new e-mail account with Hotmail - Free. Sign-up now.

> > > > > > >

> > > _________________________________________________________________

> > > > > > > http://clk.atdmt.com/UKM/go/197222280/direct/01/

> > > > > > > Do you have a story that started on Hotmail? Tell us now

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

July 25, 2010

Hi ,

An email would be fine. We have a variety of documents that outline the

shockingly poor treatment of children with ASD (the survey results, some case

studies, etc) and the email would become part of that evidence. We are working

on developing more that shows just how things do go wrong, and your case is such

a shocking example of things could go very well, right up to the last moment.

Just write it up in as much detail as you're comfortable with--even costs if you

have them, showing how very inexpensive helpful treatment for Norman would be to

the NHS compared to other treatments, yet your family must still bear the

burden.

Thanks so much .

Anita

> > > > > > > >

> > > > > > > > I looked in a few books last night

> > > > > > > >

> > > > > > > > Mcandless, Rimland/ Pangborne, Dan, and Muscroft all

> > > > recommend

> > > > > > > this Vitmain A protocol but they tend to say you need to say

> yes

> > > > to 3

> > > > > > > out of the following 5:

> > > > > > > >

> > > > > > > > 1. Issues aftter MMR

> > > > > > > > 2. Ongoing gut problems

> > > > > > > > 3. Even slightly elevated IgG

> > > > > > > > 4. Autoimmune to myelin

> > > > > > > > 5. Measles in ileum

> > > > > > > >

> > > > > > > > ** Ive answered yes to the 1st 2. How can i tell if ive

> got

> > > > elevated

> > > > > > > IgG? Would that be my requirement for gf/cf diet?

> > > > > > > > Im also seriously considering doing this.

> > > > > > > > --

> > > > > > > > is

> > > > > > > >

> > > > > > > > Get a new e-mail account with Hotmail - Free. Sign-up now.

> > > > > > > >

> > > > _________________________________________________________________

> > > > > > > > http://clk.atdmt.com/UKM/go/197222280/direct/01/

> > > > > > > > Do you have a story that started on Hotmail? Tell us now

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

July 25, 2010