RE: Those on LDN

[Guest guest]

Ok. I have chronic progressive MS. Haven't been able to balance, stand or walk for 5 years. LDN hasn't phased any of the symptoms. I used to have to go to the restroom every 10 - 15 minutes if I wanted to stay dry, and some of the time even that didn't work! Now my bladder control is I would say 75 % - 80% improved. I sometimes go 2 - 3 hours without going, and I have slept 6 - 8 hours before waking up to go. My problem here is it takes me so long to get out of bed, but it's still better than getting up 3 - 4 time every hour during the night. I have been on LDN for 10 1/2 months. I truly do think that I haven't gotten any worse. Keep in mind I am an 8 - 8.5 on the EDSS scale to begin with. With LDN, at least I am hopeful that I can get better.

Now, as far as your doctor being an expert in MS...does he/she have MS? He may know from a traditional medical standpoint everything that he was taught, but he still doesn't know everything. You have MS, so chances are that you know as much if not more about what you are feeling than he does! Give yourself more credit!! You found out about LDN, not him! Try it! You may be one of the lucky few that does see miraculous results!! You will never know until you try!

Best of luck!!

Marcie

In a message dated 9/17/2004 10:43:41 AM Central Standard Time, adj022762@... writes:

Those on LDN. I need to know your situation. 1st mine.

I use a scooter to get around. Can only take a few steps with a walker. Left arm is weak and numb, mostly from Tendenitist. If I fall I need assistance getting up. Bladder/Bowel, well when you gotta go you move your butt and get to the can.

So for those on LDN, can you be more specific on your progress than just "I feel better'. Is walking improving, things like that. I'm going to try and persuade my regular doctor to prescribe it. My neuro thinks it's silly and he's an expert on MS. One last thing. What's the best place to get it? The web site list a few good compounders, but who can recommend the best.

Thanks

[Guest guest]

For years I have suffered from constant extreme fatigue. Pain in my

neck and lower back and almost constant headaches. Off and on

bladder frequency issues. Sexual dysfunction in the form of total

loss of libido. Never knew what it was and it went untreated. On the

weekdays I was unable to do anything more than shower / work / eat

enough to survive / bed. (During these years I gained 180 pounds due

to inactivity.) On the weekend I was doing good to accomplish 4 or 5

loads of laundry, maybe vacuum or dust (never both) and manage to

get food in for the coming week. Everything else in my life was left

undone or was done for me by my 73 year old mom. I am a successful,

educated, independent, goal oriented person and living like that was

driving me crazy. I thought I was crazy.

I had my first major flair-up in late January, 04: numb face / total

loss of vision due to ON. Was Dx'd with MS in February, 04. (Via

spinal tap / MRI is clean.) After steroid treatment both the

numbness and blindness symptoms started to resolve (I returned to

work but was still unable to see well enough to drive and was still

biting myself on a daily basis since I could not feel my face /

mouth), and I finally knew there was a cause for the fatigue and

pain. In early March (about 45 days after my first flair-up) I had

my second one: total loss of feeling in face / head area, numbness

and tingling on my hands and feet, and new and different visual

problems.

I began LDN in mid April. Since that time I have been completely

flair-up free and all of my symptoms have slowly disappeared. I am

living again and have (without changing diet) lost almost 100 pounds

due to the increase in activity. I am not only driving, working full

time, but have completely regained my life. I have been able to

resume my walking routine which I had stopped due to fatigue, not

any other reason. After working a full day, I go home, do housework -

play with my daughter and animals - do a little yard work and

laundry. On the weekends I am able to whatever I want. I am even

starting to entertain again - inviting friends over for meals. I

have cleaned out my 2 car garage (4 dumpsters hauled away!) torn

apart my bathroom and replaced all fixtures / flooring / baseboards.

Replaced my kitchen faucet. (And I do mean I have done it, not hired

someone to do it!!!) Cleaned and organized all the cupboards and

closets in my 3 bedroom house. I am looking forward to cooler

weather, so that I can start to attack my much overgrown ½ acre of

yard!!! My thinking (which I had never noticed was lacking) has

become crystal clear again. I remember things and the " brain fog "

has lifted. I am happy, positive and more like my " old self " before

the days when the fatigue first hit - sometime in the mid 1990's.

Now I am doing for my mom, instead of her doing for me - a much

better arrangement!

I am on day 154 of 4.5 LDN. I seldom have any pain, and take less

than 2-3 doses of OTC meds like Motrin or Alieve a week. (Pre LDN I

was taking 10/15 doses of OTC pain meds a day!) I take a few other

supplements - vitamins and fatty acids/oils and am on bio-identical

hormone therapy. (47 and pre-menopausal.) No other medication. I am

still overweight but have no other health problems - blood sugar:

normal / blood pressure: normal / cholesterol - low at a total of

110. All other tests are in the " normal " range. My MRI was

unremarkable. Spinal tap: positive for protein banding that

indicated MS.

My neuro (a MS specialists) wouldn't Rx the LDN. He no longer sees

me - my choice. I received my LDN script from my HRT doctor as my GP

belongs to the same medical group as the Neuro and will not Rx

anything the Neuro will not approve. I will continue to see my GP

for annual physicals.

I highly recommend Skips in Florida for obtaining compounded LDN.

They offer fast, reliable service.

[Guest guest]

You are lucky if you can use a walker, I tryed on the other day and because I can not raise my left leg off the ground at all, I have to lean to the right and swing my left leg in a wide arc to walk. Of course I kick the walker and want to fall down if I can lean far enuf to the right to swing my leg that is. So I am only able to walk with a cane and only for twenty feet or so without a rest. Yesv I too use a scooter and an electric wheelchair for mall shopping or even the superstore grocerie store( the aisles in the smaller local groceries are way to small to let me move around in them).But then they get me what I want as I sit there.

I am sure that my hips will give out before I am sixty at this rate so that is why I am not willing to b e happy with where the ldn has left me.I WANT MORE!

Yes my bladder control is that of an eighteen year old but yet when I hit the floor I need a strong chair or counter or something to hold onto to get up.

When you say "you gotta go" well that was the first thing that went away for me and was I happy no more extreme urgency, I would say only normal urgency now.

I think we, almost to the person, will agree(except for one lady out there)that nuero's are fairly blind when it comes to a new way to use an old drug.

Good luck in your quest.

Reg

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

From: low dose naltrexone

Date: 09/17/04 10:47:36

low dose naltrexone

Subject: [low dose naltrexone] Those on LDN

Those on LDN. I need to know your situation. 1st mine.I use a scooter to get around. Can only take a few steps with a walker. Left arm is weak and numb, mostly from Tendenitist. If I fall I need assistance getting up. Bladder/Bowel, well when you gotta go you move your butt and get to the can.So for those on LDN, can you be more specific on your progress than just "I feel better'. Is walking improving, things like that. I'm going to try and persuade my regular doctor to prescribe it. My neuro thinks it's silly and he's an expert on MS. One last thing. What's the best place to get it? The web site list a few good compounders, but who can recommend the best.Thanks

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

I have a 16 year old son who started LDN over 3 months ago. He was

diagnosed RRMS 3 years ago, at age 13. He had 3 major exacerbations

with hemiparalysis, optic neuritis, all the usual severe MS symptoms

of an attack. He also experienced tingling and slurred speech at

times in between these attacks. He used Avonex for one year, had

one of the worse exacerbations he has had, and was then switched to

Rebif. After a year of that with very little faith in the

interferons on our parts, his depression got so severe that we

became very concerned. He also had severe problems with the

injections themselves. He was totally intolerant of heat, had

extreme fatigue, and such " brain fog " that he had dropped from a

straight A student to barely passing.

Since starting LDN, he has seen alot of improvement in all areas.

He has no more heat intolerance, no more fatigue, and his

concentration has returned to the way it was prior to being

diagnosed. He has lost weight because of his increased energy

level, but this is okay, because he was overweight from not being

able to do things before. In other words, he has his life back, and

that is the only way he can describe it to you if you ask him. He

did not have any severe residual problems from the attacks, but the

disease and the treatment were taking a toll on him mentally and

physically until we took control of his health.

I hope this helps you to make your decision. What we are looking

for here is to halt the progression. All this other stuff is just an

added bonus. Take care!

Kim

> Those on LDN. I need to know your situation. 1st mine.

>

[Guest guest]

I only started using 3 mg LDN 12 days ago.

I suppose I have the worse MS, which progresses and doesn’t

stop.

I have MS 24 years, and 16 years I am not walking at all, I cannot

even stand.

I have bladder incontinence.

I found out that I have more energy,

I have more strength in my arms, hands.

I had heaviness on my left side of the face and ear, and at times like

wings flattering in my ear, that has improved.

Since May this year something is happening in my abdominal

region, and I am not sure what it is.

First I thought it was urine infection, but the tests came back

negative. Colonoscopy was Ok also. Then it started again, so dr

gave me Nitrofurantoin 100 mg for one month, after that I started taking LDN and the troubles

started again. This

time more severe. Waiting this time for another urine test. Well all the doctors are telling met hat

it is nerves and muscles which burn and pain so much.

I

just hope that it will settle itself especially when I am using LDN. I also take a lot of supplements,

vitamins, minerals, oils and herbs and I hope something will help.

So

far with the little what I noticed since I started taking LDN I am satisfied,

and I hope that it will progress in my favour.

*Zora*

San

Trinidad

West Indies

***

[Guest guest]

adj,

LDN has done an extremely good job of regulating my previously uncertain bowels. I varied from constipation to diahrrea and back. No problem now. And my bladder spasms and urgency are gone. I had an area on my left rib cage that felt sunburned and over sensitive, it is now normal. My sense of well being is greatly increased. I can feel my feet, and the skin on my legs. I can feel hot and cold on my extremities and had been unable to do so for at least three years. I can tell the difference between rough and soft toilet paper... My grip is stronger in both hands, my legs are stronger. My doctor was very impressed with the difference in my leg and hand strength, as well as the return of sensation in my feet. My awareness of where my feet are has improved tremendously.

I have plenty of symptoms that have remained the same, but the ones that have improved are more than worth the limited cost of the medicine.

JT

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

From: adj022762

low dose naltrexone

Sent: Friday, September 17, 2004 9:37 AM

Subject: [low dose naltrexone] Those on LDN

Those on LDN. I need to know your situation. 1st mine.I use a scooter to get around. Can only take a few steps with a walker. Left arm is weak and numb, mostly from Tendenitist. If I fall I need assistance getting up. Bladder/Bowel, well when you gotta go you move your butt and get to the can.So for those on LDN, can you be more specific on your progress than just "I feel better'. Is walking improving, things like that. I'm going to try and persuade my regular doctor to prescribe it. My neuro thinks it's silly and he's an expert on MS. One last thing. What's the best place to get it? The web site list a few good compounders, but who can recommend the best.Thanks

[Guest guest]

i have only been on ldn 3mg for 2 1/2 months

my bowel function is now normal, i too varied between diarrhea and constipation, i had constant urinary tract infections, but not anymore

my balance is about the same, (i am ambulatory) cogntion is good, and sleep is improved

i do have leg spasms at night occasionally, just an annoyance

i tried cutting back on rebif, that did not work out for me, and have since returned to 3x a week. my neuro does not know that i am taking ldn, and i have no plans to tell him... he wanted me to start cathterizing, i really don't want to do that, and i have been infection free for 2 1/2 months now, obviously i'm, not retaining much urine

-------------- Original message --------------

adj,

LDN has done an extremely good job of regulating my previously uncertain bowels. I varied from constipation to diahrrea and back. No problem now. And my bladder spasms and urgency are gone. I had an area on my left rib cage that felt sunburned and over sensitive, it is now normal. My sense of well being is greatly increased. I can feel my feet, and the skin on my legs. I can feel hot and cold on my extremities and had been unable to do so for at least three years. I can tell the difference between rough and soft toilet paper... My grip is stronger in both hands, my legs are stronger. My doctor was very impressed with the difference in my leg and hand strength, as well as the return of sensation in my feet. My awareness of where my feet are has improved tremendously.

I have plenty of symptoms that have remained the same, but the ones that have improved are more than worth the limited cost of the medicine.

JT

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

From: adj022762

low dose naltrexone

Sent: Friday, September 17, 2004 9:37 AM

Subject: [low dose naltrexone] Those on LDN

Those on LDN. I need to know your situation. 1st mine.I use a scooter to get around. Can only take a few steps with a walker. Left arm is weak and numb, mostly from Tendenitist. If I fall I need assistance getting up. Bladder/Bowel, well when you gotta go you move your butt and get to the can.So for those on LDN, can you be more specific on your progress than just "I feel better'. Is walking improving, things like that. I'm going to try and persuade my regular doctor to prescribe it. My neuro thinks it's silly and he's an expert on MS. One last thing. What's the best place to get it? The web site list a few good compounders, but who can recommend the best.Thanks

[Guest guest]

Hello Kathy,

I use at the moment Slippery Elm together with high potency Cranberry

tablets twice a day.

Doctor examined me on Wednesday and told me that everything is OK, my

kidneys and etc., and till now we keep getting negative urine tests.

I was always on some sort of diet and was vegetarian for number of

years. Right now I am on BBD, Best

Bet Diet, with which I see good results. I am thinking that probably as I

started eating meat after 25 years might have something to do with my current health situation…

this burning sensation in abdomen, one minute it is on the left hip, next time

on the spine, then it moves to left groin and this how it is, so I really do

have other thought if it is really UTI.

I did read lately a lot about self catheterization, people in our

condition do have good results with it once there is high hygiene kept, and

that is about every 4 hours. That

means that you or your caregiver has to do it every 4 hours, to insert a tube

into your bladder and drain it out completely….and remove the tube,

sterilize it for next use….

Let me know how you are doing.

I hope that both of us will have relief soon.

I hope that the LDN will help me to stop the UTI’s. At the moment I am taking 3 mgs. Probably next month I might be able to

get higher dosage.

*Zora*

San

Trinidad

West Indies

***

[Guest guest]

--- I have had good results by being on LDN for almost a year now, my

neuro is impressed but I believe they feel that they are not treating

us in a way that is acceptable with neuro standards. I get the

impression my neuro is happy for me and his other patients on LDN,

but he is not going to yell it from the rooftops (sort of speak). He

has admitted that there is no money to be made on LDN and therefore a

study is not a reality!

Steve

In low dose naltrexone , " adj022762 " <adj022762@y...>

wrote:

>

> I've been on this board for a few months. I've seen a lot of posts

> stating that there are using LDN and felt much better compared to

the

> CRAB crap. This is great to here but I don't see anything on your

> doctor's reaction. This is the info we need out there. Is anyone's

> doctor tracking the results? Information like that would be a big

> boost if it got around. It would prove that LDN works and maybe

> convert the none believers. Don't get me wrong, all the info is

good

> as it motivates me to do it. As soon as I talk to Dr. next

> week, I hope to start on it.

[Guest guest]

I have an MD now who prescribed LDN. He is also a ND (naturopath) and an

acupuncturist. He is very open and is helping me with MS and will be tracking

my progress. The neurologists at Kaiser want nothing to do with it - won't

even look at the research I've brought them, didn't even know what naltraxone

was! My new MD knew exactly what the drug is and how it was orginally used

and read all the research I gave him. I asked him how he knew about

naltraxone and he said because he was in " pain medicine " for a long time

and they use it for different things. Perhaps he will support our effort in

getting

the word out. At least he will know about it in a new way.

Alice

--- In low dose naltrexone , " adj022762 " <adj022762@y...>

wrote:

>

> I've been on this board for a few months. I've seen a lot of posts

> stating that there are using LDN and felt much better compared to the

> CRAB crap. This is great to here but I don't see anything on your

> doctor's reaction. This is the info we need out there. Is anyone's

> doctor tracking the results? Information like that would be a big

> boost if it got around. It would prove that LDN works and maybe

> convert the none believers. Don't get me wrong, all the info is good

> as it motivates me to do it. As soon as I talk to Dr. next

> week, I hope to start on it.

[Guest guest]

Alice,

My doctor who is an MD and has moved in the alternative direction, also knew what Naltrexone is. For many years he was an Anesthesiologist, so I guess he would have needed to know how it could interact with other drugs. Slowly, maybe the news will reach mainstream. I know of a holistic dentist in West Texas who was so impressed that he has put several patients on LDN! One of them is my friend who has several neurological symptoms but no diagnosis. She is doing great on LDN. More energy.

Marcie

[Guest guest]

Remember that it is usuall to revisit old symptoms or seemingly have an

attack when starting LDN. In no way should taking this low of a dose cause

you to have a severe or disabling attack.

But then what do I know I have only got one year of LDN use under my belt

And I love it!

Reg.

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

From: low dose naltrexone

Date: 10/14/04 07:48:14

low dose naltrexone

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

I've only been on the LDN for about 3 weeks, and have

found at first the nueropathic pain has definately

gone down. I also have found that the spastic muscles

have gotten much better. Only problem that's

concerning me write now is, I started the LDN write

after a dose of solumedrol, and was feeling 100%

normal with all sensation in my feet back to normal.

But in the last week I feel my feet once again going

numb again. Does this seem like a normal thing to

most people taking LDN at first. This first month is

3mg, and them am going to 4.5mg. I plan on giving LDN

[Guest guest]

Marcie,

That is so good hear. I have been wondering what others here have been

doing for doctors. I figured my guy can't be the ONLY one who gets it.

Way cool,

Best of luck to you,

Alice

> Alice,

>

> My doctor who is an MD and has moved in the alternative direction, also

knew

> what Naltrexone is. For many years he was an Anesthesiologist, so I guess

he

> would have needed to know how it could interact with other drugs. Slowly,

> maybe the news will reach mainstream. I know of a holistic dentist in West

Texas

> who was so impressed that he has put several patients on LDN! One of

them is

> my friend who has several neurological symptoms but no diagnosis. She is

> doing great on LDN. More energy.

>

> Marcie