Re: Doc looking for info

[Guest guest]

Dr Sager,

What a breath of fresh air!! To hear of a doc prescribing LDN and being interested enough to ask questions!! Thank you.

My own personal experience; where sleep is concerned. For the first 3 - 4 weeks on 3mg LDN last November, my sleep was erratic. I would wake up around 3:00 - 4:00 AM ready to get up, and by 11:00 AM I was pooped! This only lasted 3 - 4 weeks, and ever since I sleep very well. Better than I had in 4 years. Partly due to bladder improvements, I'm not having to get up 7 - 8 times per night. Once and sometimes twice is the norm now!

I have found that I sleep most sound when I have gotten some sun exposure during the day. NOT sunburn! Just 10 - 30 minutes of pure sunshine on my arms and legs. (I'm in a wheelchair all the time) I have read that this stimulates the melatonin production. Also something about the Pineal gland. You probably know more about that than I.

As for stiffness, I'm stiff as a board! Have been for nearly 5 years, but LDN hasn't made it any worse. I am taking DL-Phenylalnine which seems to help somewhat, and I take 500mg of Keppra per day (250mg 2 x per day). At one point, I was up to 1500mg of Keppra, but I was having some days where my spasticity was so much reduced that I couldn't get myself on or off of the toilet, so I backed off to the 500mg which seems to help me. I think I am building some strength, so maybe in time a larger dose of Keppra will be good. I think the study for this was done at Baylor University by Dr Kathleen Hawker if you want to research it. It was in the news back in Dec '03.

I hope this helps you, and I look forward to your posts regarding your patient's experiences with LDN! You also might contact Dr Bahari in NYC.

I also do bee venom therapy which I know helps me. If you have questions, you can e-mail me personally.

Marcie (PPMS)

In a message dated 5/31/2004 8:26:29 AM Central Standard Time, drbob@... writes:

Hello everybody - I've been using LDN with patients for about a

month, partly as a result of finding this group. I'm interested in knowing if there is a

comparable group for docs using LDN to share clinical ideas.

[Guest guest]

Dr. Sager you are going to make a bunch of people here really happy!

Everyone will be delighted to give you plenty of feedback. Bless you for

your willingness to try something a bit different for your patients!

When I first started the LDN (3 mg) I slept better than I had in years, for

about a month, then I started having wakeful nights again. Melatonin has

been very effective for me. I've used it on and off for the last several

years for pre-LDN sleep issues, almost as a sleep cycle training aid. Seems

like I can use it for a couple of months, then quit for a few. Then my

sleep cycle begins to change again and I go back to the Melatonin. It has

also worked very well to overcome the 3 am LDN wake up pattern.

Some people have found relief for the muscle stiffness with Benfotiamine. I

had been using it for about a week and found increased energy but no help

for the stiffness. Then my husband snagged my bottle and I just haven't

ordered more yet. He says his hips don't ache all the time taking the

Benfo... seems like he'd share, don't you think?

I've thought about quitting the LDN because of the stiffness. It isn't just

my legs; my intercostals are also very stiff. But the LDN has done such a

great job of correcting my bladder issues I have to stick with it and hope

the stiffness will ease, or someone will have a suggestion that helps.

I would be willing to try magnesium; how much would be appropriate?

Welcome to the group!

(MS)

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

From: " swmcsager " <drbob@...>

<low dose naltrexone >

Sent: Monday, May 31, 2004 7:03 AM

Subject: [low dose naltrexone] Doc looking for info

> Hello everybody - I've been using LDN with patients for about a

> month, partly as a result

> of finding this group. I'm interested in knowing if there is a

> comparable group for docs

> using LDN to share clinical ideas.

>

> Also I have some questions regarding what I'm seeing in my patients

> and also reading

> here.

>

> The sleep disturbance that comes in the beginning - has anyone tried

> improving sleep

> during this startup period with natural approaches, such as melatonin

> or 5HTP or GABA

> support?

>

> The muscle pain/stiffness - has anyone tried natural approaches, such

> as increased

> magnesium or other supplements.

>

> My MS patients seem to have the most startup reactions and some will

> not put up these

> two symptoms and quit. That's why I have begun to think about

> supplements to ease

> these symptoms.

>

> One patient with chronic relapsing West Nile virus infection has

> noted a great

> improvement with LDN added to the other things I was using to reverse

> her frequent

> symptom flareups.

>

> Bob Sager MD

>

>

>

>

>

>

[Guest guest]

Hello Dr. Sager,

It was a pleasant surprise to see a doctor post. After the

struggles that many of us have had in getting a script for LDN, it is

indeed a happy day especially for those in your area in Kansas!

I am not aware of a group for physicians prescribing LDN.

Perhaps consulting with Dr. Bihari in NY will provide you with some

helpful information.

I have only been on LDN for about a month-starting at 1.5 mg for 3

wks and 3 mg for a week. Last night was my first at 4.5 mg. I have

had some stiffness/cramping in my legs and feet which has been very

tolerable. I have been taking magnesium for a while so perhaps that

is why it is not that bad. I spend most of my day in a wheelchair,

although I can walk w/ a walker for a limited time. I also take

Copaxone which I will continue for now.

Unlike many in this group, I have not had any noticeable

improvement in my bladder especially at night. I do sleep pretty

well, but awaken to urinate every few hours which has been my pattern

for many years. So far the LDN has not affected my sleep although

many in this group will be able to share their sleep disturbance remedies.

Gail

Woburn, MA

> Hello everybody - I've been using LDN with patients for about a

> month, partly as a result

> of finding this group. I'm interested in knowing if there is a

> comparable group for docs

> using LDN to share clinical ideas.

[Guest guest]

Dr. Sager,

I am using LDN for my Crohn's disease. I take Melatonin every night to

help with sleep, but I have to say that it didn't do much for the insomnia

in the beginning. However, the insomnia went away (as it does with most

people!) within a few weeks. What did help was to take benadryl right

before bed.

[Guest guest]

So happy you have joined us. It's great to have a doctor who is

willing to learn.

I have secondary progressive MS. I walk a few steps, use a walker,

a cane my husbands arm and fo shopping using a wheelchair.

I started LDN at 4.5ml. Right away my sleeping pattern improved.

instead of waking every hour to go urinate I now get up 2 times

which is great.

I also find my energy has increased. I'm not as tired as I was

before and can do more things.

I had 87 days of stiffness upon waking. (I keep a journal of my

progress) At day 163 I find 3ml is right for me. I sleep better

and have little stiffness. More than that I have trouble falling

asleep and have more stiffness upon waking.

Besides LDN, I take

vitamins B2, B6 (100mg/a day)

vitamin C (3000mg/3 a day)

Vitamine E (400 UI/a day)

vitamine D (400 UI/a day)

vitamine B12 sublingual (500 mcg/ every 2 days)

calcium (500 ng/2 a day)

omega 3-6-9 (1200mg/2 a day)

when I need extra energy I take 2 teaspoons of bee pollen and/or

GS's histamine

http://disc.server.com/Indices/148285.html

[Guest guest]

> Hello everybody - I've been using LDN with patients for about a

> month, partly as a result

> of finding this group. I'm interested in knowing if there is a

> comparable group for docs

> using LDN to share clinical ideas.

>

> Also I have some questions regarding what I'm seeing in my patients

> and also reading

> here.

>

> The sleep disturbance that comes in the beginning - has anyone tried

> improving sleep

> during this startup period with natural approaches, such as melatonin

> or 5HTP or GABA

> support?

>

> The muscle pain/stiffness - has anyone tried natural approaches, such

> as increased

> magnesium or other supplements.

>

> My MS patients seem to have the most startup reactions and some will

> not put up these

> two symptoms and quit. That's why I have begun to think about

> supplements to ease

> these symptoms.

>

> One patient with chronic relapsing West Nile virus infection has

> noted a great

> improvement with LDN added to the other things I was using to reverse

> her frequent

> symptom flareups.

>

> Bob Sager MD

=========

I have my own LDN message board but not for docs. I could build one for docs

wanting to discuss LDN. Here's the address to my LDN forum.

Low Dose Naltrexone Forum - Home

http://ldn.proboards3.com/index.cgi?

I've suffered severe insomnia for years. After starting LDN in about 3 months of

4.5mg the insomnia cleared up and I sleep good. I used 10mg or a bit more of

Melatonin in the early days on LDN and that seemed to help but I no longer have

to use any sleep aid. In June I will have been on 4.5mg of LDN for a year. The

only time I had problems was when we changed to DST, it took awhile to adjust.

I played with fillers and found I was allergic to Avicel, headache, nausea and

dizziness. I tried Calcium Carbonate and found that my symptoms were returning

and I immediately switched back to Lactose and all is great again. I later

learned from Skip at Skip's pharmacy that if calcium carbonate gets packaged

wrong in the capsule, the calcium carbonate can make LDN sustained release and

that is BAD!! It can make LDN worthless in your body. This experiment also

proved that I was not getting a placebo effect because if it was a placebo

effect, then I should have done great while using Calcium Carbonate as the

filler whether it was working or not.

I highly recommend for tight drawn muscles investing in the Homedics Shiatsu

Kneading Massager. It's great!! I use it on my back, sit on the couch with a

pillow at my lower back, drop massager down my back and let it rest on the

pillow while it massages my upper back above and in between my shoulder blades

and on and around my shoulder blades, I remove pillow out from behind me and

lean on massager and let in massage my lower back and rib cage. You can use it

to massage your thigh muscles. Either hold massager with your hands or lay on

the bed with a medium size thick pillow under your pelvic area so the massager

won't be too harsh on the muscles and let the massager do its thing while you

lay there. JUST DON " T FALL ASLEEP UNLESS YOU HAVE MASSAGER PLUGGED INTO A

TIMER!!!! You can lay your calf on the kneads and let it massage away as long

as you desire. Same goes for your arms and neck. Putting one of the Kneading

balls against your temple while you have a headache is dandy, alternate sides

and massage both temples. Massage your stomach and feet with this thing. It

does it all. Use the massager daily or 3 to 4 times weekly. Pool therapy in

water heated no more than 87 degrees in winter and no warmer than 79 degrees in

summer is fantastic for stretching spastic drawn muscles. Pool therapy 3 times

a week or more would be quie beneficial. I also use Bill Rich's brand of

MSM(Torpedo tablets of 1000mg each), started out at 1000mg 2 times per day for 4

days and took 1000mg of Ester C along with it twice per day. Then increased MSM

to 2 1000mg tablets twice per day and still took the same amount of Easter C

for 14 days. Increased MSM to 4000mg twice per day and increased Ester C to

2000mg twice per day from then on. Helps spasticity.

Read my message board. You can get alot from it good and bad.

[Guest guest]

You should call Dr.Bihari , he would probably want to speak with you.

Also, I tried Calcium/Magnesium before bed and it definitely helps with leg cramps. The insomnia passed for me , but it took 18 days.

[Guest guest]

DR. SAGER-

YOU ARE COOL - AND SHOULD BE COMMENDED!! YOU ACTUALLY HAVE

THE BEST INTERESTS OF YOUR PATIENTS AT HEART!!!

FOR SLEEP DISTURBANCE, I USE AMBIEN, WITH NO ILL-EFFECTS.

FOR THE INITIAL INCREASED STIFFNESS, I USE BENFOTIAMINE. IT

SEEMS TO HELP. CALCIUM AND VIT. D ALSO SEEMS TO WORK WITH

THE LDN.

PLEASE SHARE YOUR FINDINGS IF YOU FIND SOME NATURAL WINNING

COMBINATIONS - AND THANKS.

BESTAUNT

[Guest guest]

Hi Doctor Bob,

I am very pleased to see that you are willing to allow your patients

to try LDN. Most of us have a had a very difficult, if not

impossible, time convincing our doctors to let us try it. I am still

trying to get my doctor to prescribe it.

I was diagnosed in May of 2003 and tried Avonex but had a lot of

trouble with the drug. I have been taking LDN for about a month now.

I started out using 50mg capsules and diluting them so I could

gradually build up to the full dose. I started at 2mg and

increased .5mg every 4th day. The sleep issue wasn't too bad for me

doing it that way. I sleep great now, as long as I go to bed early

enough. If I don't have to get up for work, I get plenty of sleep

even if I don't go to bed early. My body now allows me to sleep as

long as I need to.

There is so much positive results I have personally experienced from

LDN. I regained some of the strength in my arms and legs that I had

lost. I am able to think clearer, my energy level has improved, I

have better bladder control and emotionally I feel great.

I have had some stiffness, mostly in the morning, but I stretch and

take a multivitamin plus potassium, vitamin D and/or magnesium as

needed. It seems to help. I also take 1 to 2 aspirin per day. I was

originally taking 3 aspirin (325mg ea.) per day but have been able

to lower it to 1 or 2. I don't take aspirin for pain, it just seems

to help everything work better.

One other thing, and I don't know if anyone else has experienced

this, I noticed I feel dehydrated after taking the LDN. Now, I make

sure I drink a few glasses of water before taking it. It does seem

to help.

I hope this info helps.

God Bless,

Peny(the cheese)

--- In low dose naltrexone , " swmcsager " <drbob@s...>

wrote:

> Hello everybody - I've been using LDN with patients for about a

> month, partly as a result

> of finding this group. I'm interested in knowing if there is a

> comparable group for docs

> using LDN to share clinical ideas.

>

> Also I have some questions regarding what I'm seeing in my patients

> and also reading

> here.

>

> The sleep disturbance that comes in the beginning - has anyone

tried

> improving sleep

> during this startup period with natural approaches, such as

melatonin

> or 5HTP or GABA

> support?

>

> The muscle pain/stiffness - has anyone tried natural approaches,

such

> as increased

> magnesium or other supplements.

>

> My MS patients seem to have the most startup reactions and some

will

> not put up these

> two symptoms and quit. That's why I have begun to think about

> supplements to ease

> these symptoms.

>

> One patient with chronic relapsing West Nile virus infection has

> noted a great

> improvement with LDN added to the other things I was using to

reverse

> her frequent

> symptom flareups.

>

> Bob Sager MD

[Guest guest]

Dear Dr. Sager,

It's wonderful to see a doctor posting on this board. Thanks.

As for the sleep problems: I, myself, had sleeping disturbances,

before LDN. Since being on LDN, I sleep like a baby, just about

every night. I am almost wondering if the people who do have sleep

disturbances, were the people who did not have any difficulty falling

asleep before LDN. I've sort of come to that conclusion, both from

myself and friends on LDN, and also from reading the message board.

Before LDN, I had a lot of leg spasms, and they seem to have lessened

on LDN, though many morning I do have stiffness which is relieved

from stretching. I am also wondering if a lot of what we are

calling " stiffness " is not just muscles that are " tired " , because

they actually haven't been used for a long time. I really find that

doing exercises helps with reducing stiffness, and at the same time,

it seems to give me more stamina.

Before LDN, I was not able to walk, outside on the ground, without

the use of a crutch or at least a cane. I can now even water my

entire back yard, without any aids.....wouldn't using muscles which

have atrophied over the years, cause stiffness and soreness when they

again being used?

I am using L-Phenalenine afternoons, which seems to boost my stamina

and also my staying-power. Some have said that it re-boosts the LDN.

I can't imagine giving up this wonderful feeling, just because of a

little stiffness or spasm...or a few weeks of not sleeping well. I'm

sorry to hear that your patients couldn't wait it out.

If you have any more questions, please do not hesitate to contact me.

Pam

prsklak@...