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-   -   LDN Information & Check-in 2 (https://www.neurotalk.org/multiple-sclerosis/71392-ldn-information-check-2-a.html)

Jappy 09-02-2009 09:38 AM

I am happy to say that since I've been on 3mg. I have noticed that
my energy has greatly improved.

Also which has shocked me is that I do not have to take much or any
pain meds. The fibro has also been effected by the LDN.

I did read, where they are trying it with people that are afflicted with
Fibro and it seems to be helping alot of people. The pain is still there it is just
so mild that I can handle it. If I have lived this long with the horrible pain,pain this now is great for me. That's when I was on Tramadol (a narc)
now I take Aleve if I need something. Big change!!!!

I still take Neurontin for the ms nerve pain when needed. The doc wanted
me to take it whether I needed it or not to build up in my system. I just
won't do it. Hope maybe some day Drug Free. I know that is a big dream
that may never happen, but it does help to DREAM

Jappy :hug:

SallyC 09-02-2009 11:54 AM

Thanks, Jappy. Glad to hear your pain has diminished...Endorphins are Nature's pain killers, ya know..:hug:

Lady 09-02-2009 01:00 PM

Great news Jappy. :hug: I felt the same way, less to no pain on normal days with the LDN. I am almost drug free too. Other than the LDN, Klonopin and the new Thyroid med.

I had minor surgery yesterday and got through the pain afterward, with no pain med other than Tylenol. I usually use Aspirin but bleeding was an issue after the Thyroid Biopsy, so Aspirin was not allowed.

I won't get the results for a while yet. Minimum 7 days. But the LDN last night let me sleep without pain because Tylenol is not strong enough for me at night, IMO. I can't use Aleve or Advil, wish I could. It hurts my tummy(another auto-immune disease I have there).

Tylenol helped, with an ice pack for the swelling, for a few hours during the day, until bedtime and LDN.:)

I was telling Twink about my minor surgery.. She is so sweet.:)


Carol and Kitty that's wonderful news for you two, too. :hug:

Kitty which Thyroid med do you take? Can you take yours with food? What strength? Is it for low Thyroid function?..Hypothyroid? Sorry for so many questions, you could PM me if you wish. :hug:

Sally, I am glad you're doing well also. :hug:

Anyone else?

lady_express_44 09-02-2009 01:11 PM

Quote:

Originally Posted by CarolM (Post 561830)
I'm been taking 3 mg of LDN (since June 15) and was planning to increase that, but if I'm doing so well, I'm thinking, why change what's working? Any thoughts on that would be appreciated.
C

Carol, 3.0mg is fine for protecting you, so I agree you do not need to up it. If you decide to at some point later, just to "see", I would not do it when the weather is changing to cold. As it is, I have to drop down to 3.25mg at the end of Sept/beginning of Oct, for about 3 weeks every year. Then I go back up to 4.5mg, cause I am fine at that dosage.

Remember too, that although you can do more ... you are doing more!! ;) So many people push themselves much more on LDN in the early days, then don't understand why they are having some issues; muscle fatigue, etc. I looked at it as "look how much I am doing ... it's no wonder!!".

Glad to hear you and Jappy are off to a great start. The really great part is when this goes on for months or years, and you can COUNT on feeling mostly ok on an ongoing basis.

I'm doing well too ... as per usual. No issues except when I got bronchitis and a sinus infection. ALWAYS TREAT INFECTION RIGHT AWAY!!! I did, and didn't end up in an attack or anything, but have learned that lesson the hard way in the past. :)

Cherie

Kitty 09-02-2009 01:25 PM

Quote:

Originally Posted by Lady (Post 562188)
Kitty which Thyroid med do you take? Can you take yours with food? What strength? Is it for low Thyroid function?..Hypothyroid?


I take Levothyroxine. 100 mcg daily. I take it on an empty stomach as soon as I get up in the morning. It's for hypothyroidism.

I really can't tell a difference when I take it. I've forgotten to take it several times and don't notice anything. If I just quit taking it I'm sure I'd eventually notice something. Luckily it's one of the generic meds that I can get a 3 month supply of for $10.

Lady 09-03-2009 12:08 AM

Thank you Kitty. I am on a smaller dosage since I just started it. I will be monitored in 4 weeks, then in 8 weeks with blood tests.

I am taking a Brand name Synthyroid, more money than yours. I will ask the Endo doc if I can switch. When I take it on an empty stomach I feel so drugged within that one hour in the morning. Also I can't wait for my coffee.

Thanks for answering me Kitty. :hug:

lady_express_44 09-24-2009 10:55 AM

Bearing in mind this was only 50 people, there were allowed to stay on their drug of choice, it was only for 8 weeks, they started at 4.5mg (side-effects during that short period might outweigh any benefits), the questions are subjective, we can't see the raw data, etc ....:

A randomised, placebo-controlled, crossover-design study of the effects of low dose naltrexone on Multiple Sclerosis Quality of Life Inventory (MSQLI54)

N. Sharafaddinzadeh, D. Kashipaza, A. Mogthaderi (Ahwaz, Zahedan, IR)

Objective:

Multiple sclerosis (MS) significantly affects the quality of life (QoL) of patients. The use of low doses of naltrexone (LDN) for the treatment of MS enjoys a worldwide following among MS patients. There is overwhelming anecdotal evidence about beneficial effects of LDN on relapse reduction and disability and in general patients treated with LDN report improvements in a sense of well being, fatigue, as well as bowel, bladder and sexual function.
.........

Conclusion:

LDN is not higher than placebo in improvement of the scales and Physical or Mental Health composite scores of the MSQOL54. Thus LDN has no treatment effect on the QoL of MS patients.

http://registration.akm.ch/einsicht....E_ID=2&XNKONGR...

Here's the link to the assessment method/questionaire:

http://www.nationalmssociety.org/for...cal-study-meas...



Cherie

SallyC 09-24-2009 12:24 PM

Quote:

Originally Posted by lady_express_44 (Post 570210)
LDN is not higher than placebo in improvement of the scales and Physical or Mental Health composite scores of the MSQOL54. Thus LDN has no treatment effect on the QoL of MS patient.

I'll bet that was some controlled study..:rolleyes:

I really wish the naysayers would quit doing these piddly (controlled) studies to prove us wrong and do a legitimate, longer term, bonafide, open study.

The Doc on the NMSS board has been laughing at our LDN for years..:mad:

BTW, Cherie, neither of your links worked for me..

lady_express_44 09-25-2009 12:58 PM

Quote:

Originally Posted by SallyC (Post 570250)
BTW, Cherie, neither of your links worked for me..

Thanks for letting me know, Sally.

This is the one for the questionaire they would have used to assess QoL ... hopefully it works this time:

http://www.nationalmssociety.org/for...-54/index.aspx

(then you have to click on the questionaire link itself).

I'll try to dig up the other one again ...

Cherie

lady_express_44 09-25-2009 01:05 PM

The other one was presented at the "25th Congress of the European Committee for the Treatment and Research in Multiple Sclerosis (ECTRIMS)", but you may have to search the site for "A randomised, placebo-controlled, crossover-design study of the effects of low dose naltrexone on Multiple Sclerosis Quality of Life Inventory (MSQLI54)"

Or I can send it to you by pm, cause I think I'm not permitted to post the entire document ...

Cherie


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