MB12 injections

[Guest guest]

Hi Group. Have ordered the MB12 shots from Fiorentini Pharmacy in

Italy. My emails to Coastal Compounding crossed with my emails to

Fiorentini, and as Fiorentini are here in Europe (and answered first)

I went with them. Does anyone know if MB12 degrades over time? I

have ordered 2 months supply - does it need to be refrigerated? Do

you have to use it up in a certain time period? Just curious if

anyone has looked into this, as I'm a bit worried about them in-

transit. Any thoughts would be very helpful, have looked but cant

find answer anywhere as yet. Thanks a lot, C

[Guest guest]

Hi all,

I'm writing for the first time. This group has been really helpful to

me. I'm a mother of a 5 yo Asperger son, living in Finland

Scandinavia. I've done enormous job trying to find knowledge, and

trying to make a synthesis out of it. Sorry for my bad English by the way!

We do not have any kinds of " DAN " -doctors here, the best I've found is

an elder lady doctor who has been learning a lot from Dr Abram

Hoffman. We have been on GF/CF for three months + taking supplements,

but haven't seen any progress so far. Now my son has been on SCD +

enzymes below two weeks, as have I, as I thought that I must know what

he's going through. So far I've noticed increased urination and

stomach swelling. I guess that's normal in this stage? We're taking

Houston's Zyme Prime, AFP Peptidase and No-Fenol, plus GSE.

Yesterday we met our doctor, and she had to admit that she is no

expert in this field. I asked her about the MB12-shots, she strongly

agreed that they might be very beneficial. I saw this posting, and

tried to find the Fiorentini Pharmacy in Google but didn't succeed.

Please, tell me how to contact them!!!

And please tell also, which DAN!-doctor or therapist would you

recommend as near of us (Finland) as possible? I guess there are none

in Scandinavia, but maybe sometimes in the near future I could try to

arrange an appointment with a good specialist somewhere in Europe.

Have a nice (mid)summer,

Tarja

(Son Panu 5 yo, Asperger/ASD + motorical development delay)

>

> Hi Group. Have ordered the MB12 shots from Fiorentini Pharmacy in

> Italy. My emails to Coastal Compounding crossed with my emails to

> Fiorentini, and as Fiorentini are here in Europe (and answered first)

> I went with them. Does anyone know if MB12 degrades over time? I

> have ordered 2 months supply - does it need to be refrigerated? Do

> you have to use it up in a certain time period? Just curious if

> anyone has looked into this, as I'm a bit worried about them in-

> transit. Any thoughts would be very helpful, have looked but cant

> find answer anywhere as yet. Thanks a lot, C

>

[Guest guest]

Hi Tarja, the italian pharmacy details are in the links/resources page

of treatingautism.com

I believe this pharmacy also does nasal spray now. if you go for that

one instead of shots make sure you start with the non-folinic version to

be able to judge the results better.

Natasa

> >

> > Hi Group. Have ordered the MB12 shots from Fiorentini Pharmacy in

> > Italy. My emails to Coastal Compounding crossed with my emails to

> > Fiorentini, and as Fiorentini are here in Europe (and answered

first)

> > I went with them. Does anyone know if MB12 degrades over time? I

> > have ordered 2 months supply - does it need to be refrigerated? Do

> > you have to use it up in a certain time period? Just curious if

> > anyone has looked into this, as I'm a bit worried about them in-

> > transit. Any thoughts would be very helpful, have looked but cant

> > find answer anywhere as yet. Thanks a lot, C

> >

>

[Guest guest]

Tarja, urinary issues and motor development delay are high tell tales of an

oxalate

problem. SCD unless you adapt it to be Low Oxalate will risk bigger troubles.

Almonds,

nuts, spinach, beets and other foods that are staple in SCD are no nos in Low

Oxalate. I

suggest you go to the trying_low_oxalate group in ! and read up on it.

I have a friend with a son with severe motor impairement. Could hardly stay

sitting up at

5yrs. Started the LOD low oxalate diet in December and he can now go in all

fours. my

own girl was a clutz and now rollerskates, hoola hoops, draws and colors gladly.

You can

read her progress in the database in that group.

Urinary issues (urgency, frequency and pain) are also gone.

Hope this helps.

. (from Brussels)

> > >

> > > Hi Group. Have ordered the MB12 shots from Fiorentini Pharmacy in

> > > Italy. My emails to Coastal Compounding crossed with my emails to

> > > Fiorentini, and as Fiorentini are here in Europe (and answered

> first)

> > > I went with them. Does anyone know if MB12 degrades over time? I

> > > have ordered 2 months supply - does it need to be refrigerated? Do

> > > you have to use it up in a certain time period? Just curious if

> > > anyone has looked into this, as I'm a bit worried about them in-

> > > transit. Any thoughts would be very helpful, have looked but cant

> > > find answer anywhere as yet. Thanks a lot, C

> > >

> >

>

[Guest guest]

Hi Tracey,

Thank you. When you got them from the US, did you still have to pay

vat and customs handling even though they are by prescription and not

available here? Is it worth calling the customs guys?

Best regards,

Radhe

[Guest guest]

Hi Radhe

 

We were lucky as both of our presciptions were sent to us in US when I was on holiday there and later when my husband was on a business trip... so I cannot help you with this..

 

I think that the pharmacy we used was based in Texas somewhere.. I know one of them was called College pharmacy.. We got the other thru' apotheCure Dallas Texas tel 001 800 969 6601

 

If you order specify that you need a long shelf life on the product.. we got 30ml of 10mg/ml  and it only had a shelf life of a couple of months.. so it was wasted.

 

 

We also got procaine at the same time.. a little of this can be drawn up with the MB12 and is stops the stuff stinging.

 

Best wishes

 

 

Tracey

 

 

On Tue, Mar 16, 2010 at 11:49 AM, radhe gopinath <radhe@...> wrote:

 

Hi Tracey,Thank you. When you got them from the US, did you still have to payvat and customs handling even though they are by prescription and notavailable here? Is it worth calling the customs guys?

Best regards,Radhe

[Guest guest]

Dear Radhe,

We didn't pay charges on any prescription goods imported from the US.

The mail companies (UPS especially) were insistent that customs were due but

they were wrong. Unless the law has changed in the last 1-2 yrs you don't need

to pay.

Here's an old post of mine from another list ... I would recommend calling

customs yourself to get a custom case no. You do then have to fill out forms

for deliveries and sometimes may have to pay the chap at the door (who may know

nothing about custom cases) - then claim back the money.

" I don't know if this is useful - but we are getting our {prescriptions]

delivered without VAT and charges from Coastal via

UPS. We fill in a " 10.3 " VAT exemption form which DOES apply for

prescribed goods for a disabled person. We were told quite a few

times it doesn't but it DOES. I rang customs as suggested and they

read out the relevant section of the law and - though it's verbose -

it does say that our prescribed goods are duty free. They can then

give you your own " custom case " number - no forms to fill out just

call and ask the question. Coastal Compounding put this on our

packages for us with a note (see below).

We do pay VAT on regular supplements - but if it's prescribed we

don't.

Here's the note that goes on our prescribed deliveries :

" Zero-rated VAT exempt under 1984 VAT act Section 8 Group 12 a Item

1. (Prescribed for disabled child) Ref Custom Case XXXXXXXX " "

Sandyxx

[Guest guest]

Hi Sandy,

Thank you so very much for the great info! I haven't been well and so haven't

checked here for a bit. I will try hmrc straight away. I have a letter signed

by my DAN for almost all of the supplements that my daughter takes, have had it

with me when traveling back and forth between California and here. Ooh, I am

thrilled to bits!

Best regards,

Radhe

>

> Dear Radhe,

>

> We didn't pay charges on any prescription goods imported from the US.

> The mail companies (UPS especially) were insistent that customs were due but

they were wrong. Unless the law has changed in the last 1-2 yrs you don't need

to pay.

>

> Here's an old post of mine from another list ... I would recommend calling

customs yourself to get a custom case no. You do then have to fill out forms

for deliveries and sometimes may have to pay the chap at the door (who may know

nothing about custom cases) - then claim back the money.

>

> " I don't know if this is useful - but we are getting our {prescriptions]

delivered without VAT and charges from Coastal via

> UPS. We fill in a " 10.3 " VAT exemption form which DOES apply for

> prescribed goods for a disabled person. We were told quite a few

> times it doesn't but it DOES. I rang customs as suggested and they

> read out the relevant section of the law and - though it's verbose -

> it does say that our prescribed goods are duty free. They can then

> give you your own " custom case " number - no forms to fill out just

> call and ask the question. Coastal Compounding put this on our

> packages for us with a note (see below).

>

> We do pay VAT on regular supplements - but if it's prescribed we

> don't.

>

> Here's the note that goes on our prescribed deliveries :

> " Zero-rated VAT exempt under 1984 VAT act Section 8 Group 12 a Item

> 1. (Prescribed for disabled child) Ref Custom Case XXXXXXXX " "

>

>

> Sandyxx

>

[Guest guest]

Thanks Tracey. My brother is coming from Toronto next month for the Paris

marathon and he will bring some for me. (Btw, he is running for an autism

special school in Toronto called Shining Through). I made a miscalculation and

didn't bring enough with me when I was there in December.

Best regards,

Radhe

>

> >

> >

> > Hi Tracey,

> >

> > Thank you. When you got them from the US, did you still have to pay

> > vat and customs handling even though they are by prescription and not

> > available here? Is it worth calling the customs guys?

> >

> > Best regards,

> > Radhe

> >

> >

>

[Guest guest]

Dear Sandy,

I called hmrc today and said that I wanted to get some prescription medication

from the US as prescribed by the doctor and the person at the other end said

that it was not allowed. I kept rephrasing the same thing and he was firm about

his answer. I asked him if the rules had changed in the last two years and he

said they had not. I even said that since prescription drugs in the Uk were vat

exempt, why not the ones you have to get from outside? He just kept repeating

himself.

Now, I saw this from the Downs syndrom nutritional supplies website where they

do mention that some medical supplies could be tax exempt but they only talk

about another form to send to customs to claim a refund.

Is there a form that I can just download and have attached to the shipment and

take my chance at this end.

Thanks much,

Radhe

> >

> > Dear Radhe,

> >

> > We didn't pay charges on any prescription goods imported from the US.

> > The mail companies (UPS especially) were insistent that customs were due but

they were wrong. Unless the law has changed in the last 1-2 yrs you don't need

to pay.

> >

> > Here's an old post of mine from another list ... I would recommend calling

customs yourself to get a custom case no. You do then have to fill out forms

for deliveries and sometimes may have to pay the chap at the door (who may know

nothing about custom cases) - then claim back the money.

> >

> > " I don't know if this is useful - but we are getting our {prescriptions]

delivered without VAT and charges from Coastal via

> > UPS. We fill in a " 10.3 " VAT exemption form which DOES apply for

> > prescribed goods for a disabled person. We were told quite a few

> > times it doesn't but it DOES. I rang customs as suggested and they

> > read out the relevant section of the law and - though it's verbose -

> > it does say that our prescribed goods are duty free. They can then

> > give you your own " custom case " number - no forms to fill out just

> > call and ask the question. Coastal Compounding put this on our

> > packages for us with a note (see below).

> >

> > We do pay VAT on regular supplements - but if it's prescribed we

> > don't.

> >

> > Here's the note that goes on our prescribed deliveries :

> > " Zero-rated VAT exempt under 1984 VAT act Section 8 Group 12 a Item

> > 1. (Prescribed for disabled child) Ref Custom Case XXXXXXXX " "

> >

> >

> > Sandyxx

> >

>

[Guest guest]

I must have spoken to the same guy last week! They also flatly refused to exempt the VAT on prescription medicine, I tried and tried but he also repeated the same thing over and over. No luck. He said some equipment was VAT exempt but not medicine. I even tried to say I had spoken to someone else previously who said it was and he said they must have been mistaken. Autism Treatment From: radhe@...Date: Mon, 29 Mar 2010 19:50:44 +0000Subject: Re: mb12 injections

Dear Sandy,

I called hmrc today and said that I wanted to get some prescription medication from the US as prescribed by the doctor and the person at the other end said that it was not allowed. I kept rephrasing the same thing and he was firm about his answer. I asked him if the rules had changed in the last two years and he said they had not. I even said that since prescription drugs in the Uk were vat exempt, why not the ones you have to get from outside? He just kept repeating himself.

Now, I saw this from the Downs syndrom nutritional supplies website where they do mention that some medical supplies could be tax exempt but they only talk about another form to send to customs to claim a refund.

Is there a form that I can just download and have attached to the shipment and take my chance at this end.

Thanks much,

Radhe

> >

> > Dear Radhe,

> >

> > We didn't pay charges on any prescription goods imported from the US.

> > The mail companies (UPS especially) were insistent that customs were due but they were wrong. Unless the law has changed in the last 1-2 yrs you don't need to pay.

> >

> > Here's an old post of mine from another list ... I would recommend calling customs yourself to get a custom case no. You do then have to fill out forms for deliveries and sometimes may have to pay the chap at the door (who may know nothing about custom cases) - then claim back the money.

> >

> > "I don't know if this is useful - but we are getting our {prescriptions] delivered without VAT and charges from Coastal via

> > UPS. We fill in a "10.3" VAT exemption form which DOES apply for

> > prescribed goods for a disabled person. We were told quite a few

> > times it doesn't but it DOES. I rang customs as suggested and they

> > read out the relevant section of the law and - though it's verbose -

> > it does say that our prescribed goods are duty free. They can then

> > give you your own "custom case" number - no forms to fill out just

> > call and ask the question. Coastal Compounding put this on our

> > packages for us with a note (see below).

> >

> > We do pay VAT on regular supplements - but if it's prescribed we

> > don't.

> >

> > Here's the note that goes on our prescribed deliveries :

> > "Zero-rated VAT exempt under 1984 VAT act Section 8 Group 12 a Item

> > 1. (Prescribed for disabled child) Ref Custom Case XXXXXXXX""

> >

> >

> > Sandyxx

> >

>

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