LDN

[Guest guest]

Jody we’ve seen a lot of nay sayers I don’t

think sharing people who haven’t actually taken part in seeing people on

this etc… helps any of us to keep positive.. in fact it angers me. I don’t

need to hear from another medical professional who can’t see all the

study drugs they study in their profession are worth no more than this one here

we are trying. This one although the evidence is only considered anecdotal does

have a lot of evidence and a lot of support.

Please don’t share negative views unless they say

specifically we’ve tested on it and it’s bad I’d rather not

give any credit to them just as they don’t give any credit to us saying I

am on it and it is good! Does that make sense?

Sorry if I’ve offended anyone just my 2 cents…

From: Jody

[mailto:jodycasbarro@...]

Sent: Thursday, January 08, 2004

2:44 PM

low dose naltrexone

Subject: [low dose naltrexone]

" LDN "

I WAS JUST SHARING WHAT SHE

SAID

JODY

[Guest guest]

Dear ,

Don't stop! I felt terrible, worse, for two full weeks. Then I started feeling better than I have for years. That seems to be how it works for most people. Go with it for at least a month. I know how difficult it is to feel worse, but it is WORTH IT!

Lynda

----- Original Message -----

From: maria van velzen

I am a CFS (chronic fatigue syndrome) patient and started LDN 3mg last monday, but I worsened and I am feeling bad. Does somebody understand this? I thought I should improve immediately. Now I am a little bit afraid LDN does not work for me.

I hope I am wrong and that I must have more patience. Is there someone who this effect of LDN recognizes?

[Guest guest]

I am a CFS (chronic fatigue syndrome) patient and started LDN 3mg last monday, but I worsened and I am feeling bad. Does somebody understand this? I thought I should improve immediately. Now I am a little bit afraid LDN does not work for me.

I hope I am wrong and that I must have more patience. Is there someone who this effect of LDN recognizes?

[Guest guest]

I started LDN three nights ago. My first night I woke up exactly at 2:00 a.m. and continued to constantly wake up until about 4:30. Woke up with a slight headache. The second night was absolutely horrible. I thought I would end up in the hospital. It truly felt like my head would explode. I was hot and nauseous and of course could not go to work. I ended up staying in bed until 5:00 in the afternoon. Then I started to feel better. I was afraid to take it again but I reallly want this to work and from what I read sometimes it takes a week or so for your system to get used to it. Well I woke up only once and NO HEADACHE. I feel great today. Thank God for sure. So I say don't give up. I hope this helps.

Jean

[Guest guest]

The Key to our bodies tolerating something NEW is DRINK lots OF clean filtered water....take your body weight divide by 2 and turn that number into ounzes and thats how much water our bodies need..i.e. 140 lbs.divided by 2 is 70 so 70 ounzes.of water daily......Sandy..

----- Original Message -----

From: JeanCatalano@...

low dose naltrexone

Sent: Saturday, February 07, 2004 9:03 AM

Subject: Re: [low dose naltrexone] LDN

I started LDN three nights ago. My first night I woke up exactly at 2:00 a.m. and continued to constantly wake up until about 4:30. Woke up with a slight headache. The second night was absolutely horrible. I thought I would end up in the hospital. It truly felt like my head would explode. I was hot and nauseous and of course could not go to work. I ended up staying in bed until 5:00 in the afternoon. Then I started to feel better. I was afraid to take it again but I reallly want this to work and from what I read sometimes it takes a week or so for your system to get used to it. Well I woke up only once and NO HEADACHE. I feel great today. Thank God for sure. So I say don't give up. I hope this helps.Jean

[Guest guest]

Hello weveryone,

I've been on LDN since December 21st, and I am feeling better then I

was before I started taking LDN, but I still have room for

improvement. I would like to know is there a certain length of time

before you really start to notice a big difference? About how long

does it normally take for the LDN to really kick in?

Am I trying to take things too quickly? And last how long does it

take to get the stength built back up. Is something I'm not

doing..or shall I say is there anything I should be doing. Someone

please!!

[Guest guest]

Dianna, are you certain it will need to be for that long? And is it for the sake of whatever painkiller they will be using? If so perhaps they can use something instead of opiates as soon as possible? Are there any others that are really effective even... I don't know. I do know when my husband had heart surgery he was on morphine at first and then a codeine compound when he got out of the hospital. Max time for the opiate derived meds was under two weeks. But heart surgery is certainly not as painful a recovery as many other types. Have you been able to interest your doctor in your concerns about having to stop the LDN? Perhaps someone out there has had surgery, already faced this issue, and can offer advice. Or Dr Bihari??

----- Original Message -----

From: Reg Kreil

low dose naltrexone

Sent: Saturday, February 14, 2004 9:05 PM

Subject: Re: [low dose naltrexone] Re: LDN

Hi Dianna I will never give up my ldn. I go back to the way I was within fourty-eight hours of taking the last pill! The good news is that I know I will recover totally within the next forty-eight hours and be even better! It's kind of a catch 22 you pay for running out but you get a better result when you start again.I don't know about attacks but they sound ugly, or is relying on attends and your wheel chair again when previously you had no bladder problems and were walking like having an attack? Reg.

-------Original Message-------

From: low dose naltrexone

Date: 02/14/04 20:52:54

low dose naltrexone

Subject: [low dose naltrexone] Re: LDN

Hi All:I was wondering if anyone has had to stop taking LDN for a considerable length of time, in my case it will be for about 3 weeks due to surgery.If so, do you quickly revert back to your previous symptoms or have an attack?ThanksDianna

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Kathy, myelin is made up of lipids or the good fats in our brain not saturated fat. Saturated fat causes the bad type of prostaglandin production which produces an inflamatory response which precludes every ms attack. ldn halts the progression and gives our bodies own innate healing mechanisms a chance to kick in and reverse the damage. Anyone out there who feels discouraged that they have only stayed the same and not improved should feel much hope. The body will repair itself in time when given the right type of fats and nutrients while ldn keeps it at bay. health and happiness, Kathy

----- Original Message -----

From: Kathy Penrose

Cc: Hi everyone

Sent: Friday, February 20, 2004 10:32 AM

Subject: [low dose naltrexone] LDN

I read yesterday on MSwath.ca that mylen is made of fatty tissue and that is why the mylin is attacked! If this is true why would any of us need to diet? It doesn't make much sense to me. I am a big woman.

FlashyKathy

[Guest guest]

Marcie,

Forget the word “diet” it

becomes a part of your healthy way of life. As for me and my MS, when I go to the

grocery store I automatically

Buy lean meats, veggies, fruits and stay

away from processed foods. . . get as many omega 3 foods in your mouth as

possible. . . lol Its kept me healthy and dancing with MS

for over 20 years. Just started ldn 2 weeks ago and am very excited!

Take care,

-----Original Message-----

From: marciemjm@...

[mailto:marciemjm@...]

Sent: Friday, February 20, 2004

10:44 AM

To:

low dose naltrexone

Subject: Re: [low dose naltrexone]

LDN

Possibly, the majority of fats that

we consume are not the best or most healthy kinds?? I don't diet. I

just try to eat as healthy a diet as I can without being so strict that I get

obsessed. I feel as if I already have a 'full plate' so to speak!

Marcie

[Guest guest]

Marcy, it sounds like your way of eating is a lifestyle and I commend you for that. I read once that you should always shop the far left isle of the grocery store and the far right. All the packaged and processed foods are in the middle.Also speakinf of the good fats, did you know that vitamin e must always be taken with fish oil. Otherwise it goes rancid in the body creating free radicals and does more harm than good. Kathy.

----- Original Message -----

From: Baden

low dose naltrexone

Sent: Friday, February 20, 2004 9:06 PM

Subject: RE: [low dose naltrexone] LDN

Marcie,

Forget the word “diet” it becomes a part of your healthy way of life. As for me and my MS, when I go to the grocery store I automatically

Buy lean meats, veggies, fruits and stay away from processed foods. . . get as many omega 3 foods in your mouth as possible. . . lol Its kept me healthy and dancing with MS for over 20 years. Just started ldn 2 weeks ago and am very excited!

Take care,

-----Original Message-----From: marciemjm@... [mailto:marciemjm@...] Sent: Friday, February 20, 2004 10:44 AMlow dose naltrexone Subject: Re: [low dose naltrexone] LDN

Possibly, the majority of fats that we consume are not the best or most healthy kinds?? I don't diet. I just try to eat as healthy a diet as I can without being so strict that I get obsessed. I feel as if I already have a 'full plate' so to speak! Marcie

[Guest guest]

I REALLY ENJOY READING THE DIALOGUE - EVEN THE HEATED

WORDS. WE'RE A FEISTY GROUP - AND FOR GOOD REASON. MS

STINKS - AND I'M NOT SURE WE GET THE BEST CARE BECAUSE CARE

SHOULD BE UNIQUE TO THE INDIVIDUAL. MOST NEUROLGISTS DON'T

HAVE THE TIME OR INTEREST IN TREATING THE WHOLE PATIENT AND

CUSTOMIZING TREATMENTS.

I'M INTERESTED IN EVERYONE'S OPINION. WHAT SPECIAL SERVICES

SHOULD DOCTORS OFFER - MAYBE COORDINATION OF TREATMENTS?

ALTERNATIVE TREATMENTS? PT? CUSTOMIZED EXERCISE PROGRAMS?

EDUCATION SEMINARS?

WHAT DO YOU THINK?

BESTAUNT

[Guest guest]

--Hi Mona,

Are you from Truro??

I grew up there and went to school there....

Where are you now??

If you lived there for how long and when????

Thanks

Jen

- In low dose naltrexone , BESTAUNT@R... wrote:

> HI TOM-

> ARE YOU TAKING LDN BY THE WAY?

> THANKS SO MUCH FOR ANSWERING ME.

> I'M WORKING WITH UMASS-LOWELL AND SAINTS MEMORIAL HOSPITAL

> TO DEVELOP AN ACCESSIBLE, COMPREHENSIVE CLINIC FOR MS. I'M

> ASKING MS PATIENTS WHAT THEY WOULD LIKE TO SEE IN A CLINIC -

> I KNOW MYSELF WHAT'S MISSING. AND THERE ARE JUST TOO MANY

> PEOPLE NOT GETTING ANY TREATMENT.

> I LOVE THE CAPE - USUALLY SPEND A COUPLE WEEKS IN TRURO IN

> THE SUMMER WITH MY FAMILY. I'LL BE GOING TO JUPITER FLORIDA

> IN APRIL - BUT MY DAD IS HAVING AORTIC ANEURYSM SURGERY

> 3/9. AND, I WANT TO MAKE MY PRESENTATION TO UMASS BEFORE I

> GO.

> DO YOU HAVE ANY SUGGESTIONS?

> THANKIS FOR THE INFO YOU SENT - AND I WANT TO GET YOUR BOOK.

> BESTAUNT (MONA)

[Guest guest]

Bestaunt,

What you are attempting to do is so sorely needed. It seems that the real problem is that most folks don't know the real truth about ms. Ms is an extremely manageable condition. Most folks are so full of fear when told.

Education is the first and foremost requirement for any treatment. This would give the patient the confidence to know that their life will still be happy, active, fulfilling and worth while.

I have a new book coming out this week that will spell out the steps that are available to one with ms.

I'm going to Florida tomorrow but would be pleased to discuss it with you when I get back on 3/7.

Regards,

Tom

P. S. Yes, I take LDN. I started last July. The first day I had significant improvement with urinary urgency and frequency. Also increased leg strength and balance. No further improvements since that time . However, those that did occur have remained constant.

[Guest guest]

HI JEN-

I LIVE IN LEXINGTON, MASS. LOVE TRURO - SPENT SUMMERS THERE

WITH MY FAMILY.

I JUST MOVED BACK TO LEXINGTON - AND I'M WORKING TO START A

COMPREHENSIVE MS CLINIC. I'VE MET SO MANY PEOPLE THAT DON'T

GET ANY HELP.

ARE YOU CLOSE BY?

MONA

[Guest guest]

I look forward to talking with you.

When you return, give me a call - 781-862-4728.

Have a great time in Fla.

Mona

[Guest guest]

Thank you all who responded to my 'strangeness' email. I did see my

holistic doctor yesterday. He said that there are no warnings about

quitting Copaxone. I am going to do a heavy metal cleanse on Thurs. and

next week have 9 hours of allergy testing. I am having a sinus MRI today.

I am still thinking of taking the Copaxone once a week maybe, just to cover

that base, but the headache is getting better and I still want to take as

few meds as possible. But the LDN is still the best thing that has ever

happened to me. Thank you again for the support.

I am going to start the AM DL-Phenylalamine and my holistic Dr. recommends

5HTP for sleep. I'll let you know.

Good wishes to all.

Lynda

[Guest guest]

YES! AND, MY NIGHT VISION HAS RETURNED TO BE BETTER THAN IT HAS EVER BEEN

IN MY LIFE. PRIOR TO TAKING BILBERRY, MY EYES HAD DETERIORATED TO THE POINT

THAT I HAD TO WEAR YELLOW DRIVING GLASSES AT NIGHT IN ORDER TO TOLERATE THE

ONCOMING CAR HEADLIGHTS. AFTER ABOUT 3 MONTHS OF TAKING BILBERRY, I COULD

AND STILL CAN STARE-DOWN ABOUT ANY HEADLAMP WITHOUT PAIN OR BLINDNESS.

AT THE END OF A YEAR, MY CATARACTS WERE REDUCED TO MINOR DOTS AND NOW THE

OPTOMETRIST'S DON'T EVEN SEE THEM UNLESS YOU ASK SPECIFICALLY ABOUT THEM.

THEN, THEY LOOK AGAIN FOR THEM AND COMMENT THAT THERE IS A LITTLE THERE.

NOLAND

----- Original Message -----

From: <BESTAUNT@...>

<low dose naltrexone >

Sent: Monday, February 23, 2004 3:21 PM

Subject: Re: [low dose naltrexone] LDN

> INTERESTING! THE CATARACTS ARE GONE?

> BESTAUNT

>

>

>

>

[Guest guest]

HI AAGE-

I HIGHLY RECOMMEND DR. VICTOR. HE'S IN BILLERICA, MASS

(ALSO LOWELL) AND IS PART OF THE LEAHEY EYE CLINIC. I'VE

GONE TO DR. VICTOR FOR 10 YEARS - I TRAVELLED FROM NEW

JERSEY TO MASS EVERY MONTH.

YESTERDAY, DR. VICTOR DID CATARACT SURGERY ON ONE OF MY

EYES. HE FOLLOWED ME THROUGH THE ENTIRE PROCESS. THIS

MORNING I TOOK OFF THE EYE PATCH - AND I COULD SEE

PERFECTLY!! TOO BAD NO ONE WAS THERE TO SEE MY DRAMATIC

PERFORMANCE. I'M 48, BUT BECAUSE OF STEROID USE, I

DEVELOPED CATARACTS EARLY. NO SWEAT - DR. VICTOR TAKES CARE

OF EVERYTHING.

BESTAUNT

[Guest guest]

HI MARIE-

I'LL SEE DR. VICTOR AT 11:00 TODAY FOR A FOLLOW-UP TO MY

CATARACT SURGERY. I'LL ASK HIM AND LET YOU KNOW.

BESTAUNT

[Guest guest]

I have never used Dr. victor. I just found out about him. Anyone out there

that can help Eunique.

Marie

----- Original Message -----

From: <EUNIQUE_2@...>

<low dose naltrexone >

Sent: Thursday, February 26, 2004 5:21 PM

Subject: Re: [low dose naltrexone] Re: LDN

> MARIE

>

> DOES DR. VICTOR SEE PATIENTS ON THE PHONE LIKE DR. SCOTT DOES?

>

> EUNIQUE

>

>

>

>

>

>

[Guest guest]

Bestaunt,

Do you get Naltrexone in powder or Tablets? I have tablets that I cut in

half and dilute in water. It works very well and it is easy to figure out

dosage.

Lynda

----- Original Message -----

From: <BESTAUNT@...>

<low dose naltrexone >

Sent: Wednesday, March 03, 2004 10:28 AM

Subject: Re: [low dose naltrexone] Re: LDN

> NOW I'M CONFUSED. I GET 50 MG. NALTREXONE CAPLETS AND I CUT

> THEM. NO FILLER - NO CAPSULES TO FILL. IS THIS NOT

> CORRECT? HELP?

> BESTAUNT

>

>

>

>

[Guest guest]

Naltrexone is good for about a week, I was told by a pharmacist. That is

why I only dilute half a tablet (25 mg) at a time which gives me five days

worth of 4.5 mg. It works fine for me.

HI LYNDA-

I GET THE TABLET - BUT READ EARLIER ON THIS SITE THAT

NALTREXONE IS NOT STABLE IN LIQUID FOR AN EXTENDED TIME.

DOES ANYONE KNOW FOR SURE?

BESTAUNT

[Guest guest]

Well, unless I am fooling myself, I can feel the effects of my daily dosage,

and I can for sure tell if I miss a day! And truly a pharmacist told me

that it lasted for a week. Many others mix their own in water, and seem to

do fine. It is important, however, that it be kept refrigerated!

When I first started in Jan '04, there were several people responding who

mix their own. I know it is confusing, but I use distilled water, that I

have boiled and let return to room temp. Then I mix it and put it in the

refrigerator. No problem

Good luck.

Lynda

>

> Are you sure Lynda? I was told by the producer of ReVia that it can

> only be kept ine day in water. After that day, the LDN is wasted. I

> don't know what to believe anymore, hear so many different things.

>

> Chey

>

[Guest guest]

HI LYNDA-

I GET THE TABLET - BUT READ EARLIER ON THIS SITE THAT

NALTREXONE IS NOT STABLE IN LIQUID FOR AN EXTENDED TIME.

DOES ANYONE KNOW FOR SURE?

BESTAUNT

[Guest guest]

Are you sure Lynda? I was told by the producer of ReVia that it can

only be kept ine day in water. After that day, the LDN is wasted. I

don't know what to believe anymore, hear so many different things.

Chey

> Naltrexone is good for about a week, I was told by a

pharmacist. That is

> why I only dilute half a tablet (25 mg) at a time which gives me

five days

> worth of 4.5 mg. It works fine for me.

>

> HI LYNDA-

> I GET THE TABLET - BUT READ EARLIER ON THIS SITE THAT

> NALTREXONE IS NOT STABLE IN LIQUID FOR AN EXTENDED TIME.

> DOES ANYONE KNOW FOR SURE?

> BESTAUNT