Who's on LDN?

sheilat · Post by **sheilat** » Sun Jan 25, 2004 4:17 am

Is anyone else living in Germany? Any thoughts on getting a prescription from here? My husband is here on temporary assignment for two years and I would very much like to try this drug.

I have SPMS and have been diagnosed for almost 9 years. I am on Copaxone for the last 20 months after 4plus years on Betaseron and Avonex. No help from any of them, although Copaxone feels like I'm doing better.

Thanks for any help/info, SheilaT

dave richardson · Post by **dave richardson** » Tue Jan 27, 2004 3:27 am

I am on Copaxone and 3 weeks into LDN @ 3mg I am soon to start 4mg but all I can say is give it a go I have felt so much better since I started
Be as well as you can be

Andy · Post by **Andy** » Tue Feb 03, 2004 6:28 am

Thanks Dave, I've not yet managed to persuade my doctor to let me have a script for LDN, but I'll keep trying, I've got a neuro appt on 17th so that's my next hope, next one will be contacting my MP to see if he can help. I feel so let down by the medical profession, after all it's our bodies. I even said to my doctor, "what do I have to do to get LDN? Become a heroin addict?" He kinda laughed and said "I see the irony in that."

But the thing is, drug addicts use a much larger dose of Naltrexone than we would need so why can't we get help from the doctors. We didn't bring our illnesses on ourselves, drug addicts do and they get all the help and support going! It would be absolutely WONDERFUL if all us MSers could at least TRY LDN just to see if it helps get our lives back, even just a little.

WE WANT LDN, WE WANT LDN, WE WANT LDN.
I wondered if the media could help our situation, what do you all think?

Regards
Andy

september1968 · Post by **september1968** » Sat Feb 07, 2004 8:01 am

Hey guys,
I went to the LDN site and found a link to contact us. SO, I emailed the following question...

Is it ok to take LDN & Avonex?

We shall see...I'll keep you posted

Andy · Post by **Andy** » Sun Feb 22, 2004 4:21 am

Hi, well I went to my new neuro and left him all the info on LDN, he will get back to me......
Sooooooo I decided to get LDN from a doctor in the US while I wait for my Neuro or GP to decide whether they are going to prescribe.

I am now on LDN, started taking it on Tues 17th FEB...3mg dose caps.
I'll keep you updated on my progress.

Andy ( I'm happier now I'm trying LDN )

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robH · Post by **robH** » Mon Feb 23, 2004 12:09 am

Hi Andy,

I will be in a similar situation later this week. Can you tell me who you went to in the US and what was the cost? I have plenty of stuff to show the GP and the Neuro on Thursday, but the neuro's here in west wales are very few and far between, so I want to have 'alternatives'.

Regards

Rob

Andy · Post by **Andy** » Mon Feb 23, 2004 2:52 am

Hi Rob, Here is the link I used to obtain LDN from the US.

http://www.voy.com/156761/441.html

The consultation price is now $150 (£82)

plus cost of meds and shipping

Total cost for 2 months supply of 3mg LDN capsules was $248 (£135.50)

The next telephone consultation will cost less and the script will be for more than 2 months supply.

Hope that helps you. If you need to know more, send me a private message.

Good Luck
Andy

Liza · Post by **Liza** » Sat Apr 03, 2004 11:52 am

Who on earth is charging you $248 for 2 months supply of 3MG LDN?

You should not be paying more than $25 a month. Check out www.lowdosenaltrexone.com for a list of compounders. I use Skips pharmacy. He is an absolutely wonderful man and charges only about $15 a month. For the guy from UK call Skip and ask if he will ship 2 month supplies at a time to UK. Im sure shipping cant cost more than $20 international 1800-553-7429 Fax 561-218-8873. Best of Luck - LIza

huartz · Post by **huartz** » Mon Apr 05, 2004 12:15 pm

Are you on LDN? YES
How long? 1 month
How many mg's? 3 mg
When do you take it? 11:00 PM

What kind of MS do you have (rrms, spms, ppms)?
RRMS (diagnosed 6 months ago).

Positive changes since/while taking LDN?
I had new symptom 3 month ago, all of which reduced 50%
after starting LDN.

Negative changes since/while taking LDN? NONE

Any relapses while on LDN? NO

The million dollar question: Will you continue to take it? YES

Andy · Post by **Andy** » Mon Apr 12, 2004 1:51 pm

Hi Lisa, Don't worry, I'm NOT being ripped off. The price I quoted includes the $150 telephone consultation (from Dr Scott in Wisconsin), 2 months supply of LDN and all shipping costs to the UK. I am quite happy with those prices.
Dr Bihari in New York charges much much more for a telephone consultation, (so I'm told).

Anyway, I no longer will have to use Dr Scott as my doctor here in the UK is now prescribing LDN to me.

Thanks for your concern anyway.

Andy

Andy · Post by **Andy** » Tue Apr 20, 2004 12:43 pm

Well I,ve been on LDN now for 61days (off and on until my system has gotten used to it )

Regime now is 2weeks on 3mg then break for 3 days, this routine was given to me by a doctor who is on LDN. It's so that the body does not get used to the dose and therefore need more than is required...staying on 3mg instead of upping the dose through time...makes good sense I thought.

The pains in my feet and ankles are now just a memory and I can go to bed and sleep ok. I still have my 2 walking stick to get about but I have now and again taken a few wobbly steps without them...still early days for which I intend to continue with LDN.

Feel better in myself and life is not so down....looking better as the weeks go by.
All take care

Post by **Arron** » Tue Apr 20, 2004 2:06 pm

cheers Andy ! Glad to hear you're feeling better and hope that this site was able to play a small part in that.

bertabobbie · Post by **bertabobbie** » Fri Apr 23, 2004 10:43 am

Are you on LDN? Yes.
How long? 5 weeks
How many mg's? 3 mgs.
When do you take it? 11:00p.m.

What kind of MS do you have (rrms, spms, ppms)? unofficially, spms

Positive changes since/while taking LDN? less spasticity [no longer take Baclofen], better balance, slightly less severe mood swings, progression seems to have stopped!!!

Negative changes since/while taking LDN? None.

Any relapses while on LDN? No.

The million dollar question: Will you continue to take it? He!! YES

sharonia · Post by **sharonia** » Sat Apr 24, 2004 7:07 pm

Hello

Does anyone know if this naltrexone drug is available in Canada? I has MS but my neuro doctor doesn't know what kind. I have spasticity and fatigue but taking Amantidine only. Please let me as I am interested in taking this naltrexone. I can not take any injections; afraid of needles.

Thanx and God Bless

Sheilat · Post by **Sheilat** » Sun Apr 25, 2004 1:44 am

Hi Sharonia,

There are quite a few people on LDN in Canada. Yahoo has a discussion site devoted to LDN and they post there quite a bit and share info on doctors and pharmacies. You might try to find the site through yahoo.com

Best of luck,

Sheila

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