Re: Decrease in LDN benefits

[Guest guest]

,

This is just my two cents worth, an uneducated personal opinion. I would try 6 mg rather than going down. I am doing better on a slightly higher dose. I hope the loss of improvement is only a temporary thing for you.

Marcie (PPMS)

In a message dated 7/14/2004 9:11:05 AM Central Standard Time, Lee@... writes:

I have been taking 4.5 mg (acidophilus filler) for over six months.

I use The Prescription Center in Wisconsin which is on Dr. Bihari's list of recommended pharmacies. The benefits I received were less back pain, better sleeping, and better bladder control. Within the last month these benefits are disappearing. I switched to 3.0 mg to see if that would make a difference, but it didn't. What should I do?

[Guest guest]

,

I felt noticeable changes right away, for the better. Keep in mind that I am very progressed. I have been since way before starting LDN last November. It's been so long since I have known comfort that I'm not sure that I remember what it feels like. I am hesitant to say this, and certainly don't say it in the presence of able-bodied people as they interpret it as a bad attitude. I truly don't mean it that way. In general, all days suck. Some just suck less than others! 24/7 pain in varying degrees. It's hard to put into words, so I usually don't. I will attempt here only because there are people who can relate. Again, LDN offers HOPE!! Again, it's the individual thing. Oh how I wish there was an easier way!!

Bladder control was improved immediately on 3 mg, then 4.5 mg same, 6 mg was even better for me. I am certainly stronger. I still get tired, or fatigued as the medical community says. I don't think even fatigued describes it because in my case, it can be disabling. Stiffness still persists, although DL-Phenylalnine seems to have helped. Transfers would be hard enough with the dead weight of limp legs, but in my case, they are as stiff as boards and can't be manipulated with any ease. I just manage somehow. Don't ask me how. I just do.

At any rate, I do feel as if progression has stopped, and that is a good thing!! The only bad effect that I had initially was disturbed sleep pattern. After about a month, this resolved itself, and now I sleep great. Never any nausea or headaches. If there was only a one-size-fits-all fix for everyone!!

Marcie (PPMS)

In a message dated 7/14/2004 4:11:56 PM Central Standard Time, jatrac1@... writes:

When you changed doses did you feel better right away, or did you have a few days of feeling lousy? Is it a matter of getting through some bumps till you adjust?

-

[Guest guest]

My first thought would be the possibility of some kind of infection. Sinus, bladder, allergies, etc. Other than those you might look for stress in your life, emotional or physical. Like the summer heat here in Central California, which is knocking me on my backside this year...

Next, have you refilled the prescription lately, changed your diet in some way that is affecting your overall health, quit taking some supplement, started taking a supplement, or reached an age where your hormone balance is unstable...

The problem may not have anything to do with LDN, but perhaps some other area of your life which is affecting your health.

Best of luck, and try to continue a positive outlook. I believe, and probably a majority of the gang will agree, that even with LDN we will all see ups and downs in our various conditions. We just have to ride them out and try to focus on the long term.

Hang in there.

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

From: lindafahrbach

low dose naltrexone

Sent: Wednesday, July 14, 2004 8:05 AM

Subject: [low dose naltrexone] Decrease in LDN benefits

I have been taking 4.5 mg (acidophilus filler) for over six months. I use The Prescription Center in Wisconsin which is on Dr. Bihari's list of recommended pharmacies. The benefits I received were less back pain, better sleeping, and better bladder control. Within the last month these benefits are disappearing. I switched to 3.0 mg to see if that would make a difference, but it didn't. What should I do?

[Guest guest]

Marcie, I know this dosage thing is so individual. I wish we had some guideline to help us with it. At six, even at 4.5, I feel lousy. REALLY lousy. Nasty headache at 6, severe stiffness at 4.5. My first attempt at 4.5 was followed by what I now believe was a flare up. Very weak legs, just getting my strength back now after 3 months. My only try at six was three days ago, and I'm still trying to get back to normal. I feel dizzy, tired, and really crampy. I'm reluctant to try to get to the Dr Bihari recommended 4.5 again...

When you changed doses did you feel better right away, or did you have a few days of feeling lousy? Is it a matter of getting through some bumps till you adjust?

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

From: marciemjm@...

low dose naltrexone

Sent: Wednesday, July 14, 2004 2:51 PM

Subject: Re: [low dose naltrexone] Decrease in LDN benefits

, This is just my two cents worth, an uneducated personal opinion. I would try 6 mg rather than going down. I am doing better on a slightly higher dose. I hope the loss of improvement is only a temporary thing for you. Marcie (PPMS) In a message dated 7/14/2004 9:11:05 AM Central Standard Time, Lee@... writes:

I have been taking 4.5 mg (acidophilus filler) for over six months. I use The Prescription Center in Wisconsin which is on Dr. Bihari's list of recommended pharmacies. The benefits I received were less back pain, better sleeping, and better bladder control. Within the last month these benefits are disappearing. I switched to 3.0 mg to see if that would make a difference, but it didn't. What should I do?

[Guest guest]

I went thru this also and now I think I can relate to what the PPMSers go thru when they have a relapse. Jusy when you think, "yes the world is good and life doesn't suck anymore" something like loosing the ability to go four hours without running to the bathroom just destroys you!

Mine happened during a stressfull month while plans for my parents fiftyth anniversary were being formulated plus Dads heart attack and the weather etc. ( I can almost feel myself weakening just from reviewing this..... no I am weakening)

Since LDN is no cure we do have to be careful to keep ourselves in tip top shape and not get rundown.We still have M.S.Also the weather (believe it or not) has a big bearing on how I do, and I don't mean just from hot to cold but with high and low pressure systems moving in,

Now don't laugh but....I am beginning to see a direct corrolation with my good days and bad days in relation to how fast my barometer changes.

With the weather we have been having lately I am not having that many good days,but August is comming and with it more settled weather I hope.

First diagnoses of M.S. in 1981 with three attacks, then good health until 1996, then SPMS until Oct , 4.5mgs LDN for seven

months now 3.0mgs for three months.

Reg.

From: lindafahrbach

low dose naltrexone

Sent: Wednesday, July 14, 2004 8:05 AM

Subject: [low dose naltrexone] Decrease in LDN benefits

I have been taking 4.5 mg (acidophilus filler) for over six months. I use The Prescription Center in Wisconsin which is on Dr. Bihari's list of recommended pharmacies. The benefits I received were less back pain, better sleeping, and better bladder control. Within the last month these benefits are disappearing. I switched to 3.0 mg to see if that would make a difference, but it didn't. What should I do?

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

I'm with you Reg, the barometric pressure changes affect me as much or more than the heat.

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

From: Reg Kreil

low dose naltrexone

Sent: Thursday, July 15, 2004 8:26 AM

Subject: Re: [low dose naltrexone] Decrease in LDN benefits

I went thru this also and now I think I can relate to what the PPMSers go thru when they have a relapse. Jusy when you think, "yes the world is good and life doesn't suck anymore" something like loosing the ability to go four hours without running to the bathroom just destroys you!

I have been taking 4.5 mg (acidophilus filler) for over six months. I use The Prescription Center in Wisconsin which is on Dr. Bihari's list of recommended pharmacies. The benefits I received were less back pain, better sleeping, and better bladder control. Within the last month these benefits are disappearing. I switched to 3.0 mg to see if that would make a difference, but it didn't. What should I do?

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

> I went thru this also and now I think I can relate to what the

PPMSers go

> thru when they have a relapse. Jusy when you think, " yes the world

is good

> and life doesn't suck anymore " something like loosing the ability

to go four

> hours without running to the bathroom just destroys you!

> Mine happened during a stressfull month while plans for my parents

fiftyth

> anniversary were being formulated plus Dads heart attack and the

weather etc

> ( I can almost feel myself weakening just from reviewing

this..... no I am

> weakening)

> Since LDN is no cure we do have to be careful to keep ourselves in

tip top

> shape and not get rundown.We still have M.S.Also the weather

(believe it or

> not) has a big bearing on how I do, and I don't mean just from hot

to cold

> but with high and low pressure systems moving in,

> Now don't laugh but....I am beginning to see a direct corrolation

with my

> good days and bad days in relation to how fast my barometer

changes.

> With the weather we have been having lately I am not having that

many good

> days,but August is comming and with it more settled weather I hope.

>

> First diagnoses of M.S. in 1981 with three attacks, then good

health until

> 1996, then SPMS until Oct , 4.5mgs LDN for seven

> months now 3.0mgs for three months.

> Reg.

>

>

>

>

>

>

> From: lindafahrbach

> low dose naltrexone

> Sent: Wednesday, July 14, 2004 8:05 AM

> Subject: [low dose naltrexone] Decrease in LDN benefits

>

>

> I have been taking 4.5 mg (acidophilus filler) for over six

months.

> I use The Prescription Center in Wisconsin which is on Dr.

Bihari's

> list of recommended pharmacies. The benefits I received were less

> back pain, better sleeping, and better bladder control. Within

the

> last month these benefits are disappearing. I switched to 3.0 mg

to

> see if that would make a difference, but it didn't. What should I

> do?

>

>

>

>

[Guest guest]

Ditto. . . low pressure=increase in symptoms

From: [mailto:jatrac1@...] Sent: Thursday, July 15, 2004 3:31 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Decrease in LDN benefits

I'm with you Reg, the barometric pressure changes affect me as much or more than the heat.

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

From: Reg Kreil

low dose naltrexone

Sent: Thursday, July 15, 2004 8:26 AM

Subject: Re: [low dose naltrexone] Decrease in LDN benefits

I went thru this also and now I think I can relate to what the PPMSers go thru when they have a relapse. Jusy when you think, "yes the world is good and life doesn't suck anymore" something like loosing the ability to go four hours without running to the bathroom just destroys you!

I have been taking 4.5 mg (acidophilus filler) for over six months. I use The Prescription Center in Wisconsin which is on Dr. Bihari's list of recommended pharmacies. The benefits I received were less back pain, better sleeping, and better bladder control. Within the last month these benefits are disappearing. I switched to 3.0 mg to see if that would make a difference, but it didn't. What should I do?

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

>

>

>

>From: Reg Kreil <mailto:regkreil@...>

>Subject: Re: [low dose naltrexone] Decrease in LDN benefits

>

> I went thru this also and now I think I can relate to what the PPMSers go

>thru when they have a relapse.

>

Reg, PPMSers don't have relapses. That's what gives us the " progressive "

(what I call " the slide " ) label, as opposed to " relapsing-remitting. "

Martha