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Old 06-27-2012, 08:39 PM   #1
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Tasia9 HB User
Will be starting LDN

Hi Everyone!
Here is a quick update from an infrequent poster

Finally, after 7 months of persistance, I have been given a script for LDN. I will begin taking it tomorrow. I am very happy with the outcome of my latest visit with a new doctor.

Hope everyone is staying healthy and well!
Take care
T

 
Old 06-28-2012, 04:09 AM   #2
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Will be starting LDN

Hi Tasia!

Congratulations and welcome to yet another club im a memeber of! It will be a full year on LDN for me in September and so far, Im thrilled with it! What mg are you starting on? And, from where are you getting it compounded? Make sure that the filler is Avicel and that it is a short acting (not long acting) filler. And, if you have any questions about getting used to this, please shout out.

Many people have some lack of sleep issues when they start LDN due to the abundance of endophins which are released when its taken. Always take it at night, right before bed! Whatever mg your doctor has you starting on, stick with it for at least 6 weeks before raising it, and remember, the highest dose is 4.5 mgs. You only want to increase it a 1/2 mg at a time up to 4.5 mgs. Anything higher would be counterproductive.

I really hope this helps you and stabilizes you and gives you the wonderful boost of energy which I have gleaned by taking it....please keep us posted!
Nikki
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Old 06-29-2012, 05:29 PM   #3
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Tasia9 HB User
Re: Will be starting LDN

Hi MSJayhawk
Thankyou so much for your well wishes. I am extremely optimistic that I am on the right track. I am eating well, exercising and living the best life I can I think LDN will give me that extra oomph I need. Take Care

Hi Nikki!!

I just picked up my rx today. I have been directed to take 1mg at bedtime for 2 weeks, then 2 mg for two weeks, then three mg if I can tolerate it. I will keep you posted as to how I am doing
I had to go to a new doctor who would perscribe me the LDN. It just so happens that he has been living with ppms for the past 15 yrs and he wrote me a script, without question. I had to travel on a plane to see him...the consult was so worth it. I still have the same primary doctor & same MS specialist. It is just nice to have some more back up so to speak
I will keep you posted
Take care
T

 
Old 06-29-2012, 05:52 PM   #4
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Re: Will be starting LDN

Tasia,
How long have you had MS? Have you tried other MS drugs?

I started on LDN one week after being diagnosed with MS in May of this year. I am on 3.5mg but will be going up to 4.5mg in mid-July. I hope it will help us.

I am sorry to hear that to get LDN you had to travel on a plane. But happy to hear that you finally got LDN. I got my LDN from a contemporary medicine doctor but when I finally talked to my neuro (who had been on vacation for most of May), he prescribed it for me too. I don't think my neuro will keep prescribing it though so I am glad that I have the first doctor.

Keep us updated to how you are doing on LDN.
N

 
Old 06-30-2012, 06:59 AM   #5
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Re: Will be starting LDN

Tasia,
You are starting on such a low dose that I dont think youll have any problem at all. Once you get to 3 mgs, youll only be in the middle range. The prescribed amount for R/R MS is 4.5, so once you are comfortable on the 3 mgs, you might want to see if your doctor will fax or mail you a 4.5 prescription to try. That, is ideally, where you need to be.

By now you have tried the 1 mg, Ill willing to bet you had absolutely no side effects at all. I hope youre doing well. Please do keep us posted! and, remember, there is a wonderful compounding pharmacy, well known in the LDN community in BocaRaton Florida, who ships anywhere if you need it filled- theyll do it over the phone ...

Nikki
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Old 07-02-2012, 07:02 PM   #6
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Tasia9 HB User
Smile Re: Will be starting LDN

Quote:
Originally Posted by Allbluezoo View Post
Tasia,
How long have you had MS? Have you tried other MS drugs?

I started on LDN one week after being diagnosed with MS in May of this year. I am on 3.5mg but will be going up to 4.5mg in mid-July. I hope it will help us.

I am sorry to hear that to get LDN you had to travel on a plane. But happy to hear that you finally got LDN. I got my LDN from a contemporary medicine doctor but when I finally talked to my neuro (who had been on vacation for most of May), he prescribed it for me too. I don't think my neuro will keep prescribing it though so I am glad that I have the first doctor.

Keep us updated to how you are doing on LDN.
N
Hi, I have had RRMS since 2006, I began rebif in 2009, after being dx'd with Optic neuritus. Unfortunately, Rebif did not agree with me, and after one full year I stopped it.

Yes, I did have to travel for the rx of LDN, but I so far it is worth it Thank you so much for your reply. I wish you the best health ever. What I have learned in my journey is that I am in control of my MS, and my job is to educate everyone else, even my primary doctor
Take good care

 
Old 07-02-2012, 07:11 PM   #7
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Tasia9 HB User
Re: Will be starting LDN

Hi Nikki, you are absolutely right, I have felt no side effects. I warned my husband that I might not be able to sleep and I have been asleep way before him, lol. I have already noticed a difference in my energy! wow, and I am only taking 1 mg. It may be "all in my head' but i do feel a difference. I have energy. I will keep everyone posted as I increase my dose.
Nikki, you are such an inspiration to everyone on this board. You have great knowledge & help so many people. Stay healthy, happy and positive
T

 
Old 07-02-2012, 07:13 PM   #8
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Tasia9 HB User
Re: Will be starting LDN

Hi again,
from My understanding, we take LDN at night because it increases our endorphins between the hours of 2am and 6am for the next day, right?

 
Old 07-02-2012, 09:43 PM   #9
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Re: Will be starting LDN

Hey Tasia, Thanks for the compliments....yes, you take LDN at night because it works with your internal clock. During the night,when you are asleep, your body resets itself. Your thyroid, pituitary and other glands secrete what the body needs during the hours of rest.....your endorphins are also released at their highest while sleeping. The way LDN works is to "trick" the body into thinking the autoimmune system is stable - therefore not attacking itself.....if you take it at night, properly, you should convince your body that everything is "ok" and there is nothing out of wack.....and no attacks should take place.

Interesting, I will be on LDN one year in 25 days. I had my one year MRI this morning..IM really curious, since i feel so good, as to whether anything has changed with me or not...ill let you know!

But keep taking it at night. Prime hours are between 10 pm and 2 am. I go to bed around 10 every night, I take it right before I hit the pillow. 3 mgs does wake me up 2 hours after I take it, but as long as I dont get out of bed, I usually fall right back to sleep. 4.5 mgs, my usual dose , wakes me up exactly 1.5 hours after I take it...but I only wake up once a week or so, the rest of the time I get a great nights sleep, and even when I do wake up, I roll over and return to restful sleep...in the beginning of taking 3 mgs, I would do housework or homework at 1 am...not a good habit to get into! Stay with it and your body will get used to it...

Who cares if its all in your head? If you think its giving you a boost, thats all you need to know! I honestly do feel much more energetic since taking it, but I always wondered if its because Rebif made me feel so lousy towards the end of my Rebif journey...

hugs, and keep me posted.
Nikki
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RRMS- dx 05

 
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