My wife and ldn

pgy · Family Member Joined: Oct 20, 2009 Posts: 25

My wife was diagnosed 18 months ago with ms. Her symptoms weren't severe but were getting worse. Leg problems, fatigue, flickering eye.
She went on rebif. 6 months later MRI showed more lessons. So her doctor changed her to Copaxane. Her fatigue was getting worse. I felt I was losing my wife.

After the change to Copaxane there was not real change.

About 4 months ago we were finally able to get a prescription for LDN. The change has been profound. She is no longer fatigued, no ms related issues at all, a couple of nights of interrupted sleep with one weird dream but thats it.

We feel she has got her future back. I don't understand why more people aren't on this. My wife was drifting away into a fog somewhere is back.

Thankyou

Sax · Newbie Joined: Jan 08, 2010 Posts: 4

hi. I'm about to start. Can you tell me what dose your wife started with and takes now?

pgy · Family Member Joined: Oct 20, 2009 Posts: 25

She got a script for 1.5mg capsules. She started on 1.5mg for about 2 weeks. No adverse feelings. Then started taking 2 caps (ie 3mg) for about 2 weeks. Then 3 caps (ie 4.5mg).

The GP writing the script didn't really know so we suggested the 1.5mg. Doctor also didn't know how to gradually increase.
She got 100 caps. This allowed us to gradually increase dose.

Now getting a script for 4.5mg caps. Scipt says 100 * 4.5mg caps.

My wife is taking Copaxane. Dhe wouldn't take it with other dmd's as we understand they would offset each other. She is also on a low fat diet and vitamin D3.

All the best

Algis · Posted: Wed Feb 03, 2010 11:17 pm Post subject:

It is suggested not to take Copaxone with LDN - As you say they would cancel each other effects.
But as I dont take any ABC drug I cant say. LDN alone has worked wonder for me.

Good luck Smile

pgy · Family Member Joined: Oct 20, 2009 Posts: 25

My understanding is copaxane is the only one that you would consider taking it with. They don't know how copaxane works but it isn't by suppressing the immune system therefore the theory is it doesn't offset the LDN effect. Speculation is the copaxane gives the antibodies something else to attack instead of the mylin. I'm not a doctor but that is my understanding. This is also theory.

I wouldn't be taking it with anything but copaxane. I have read of people dropping off others including copaxane just to take LDN but I'm not advocating people not taking their doctor supported medication.

The bottom line is that LDN is the only thing out of rebif and copaxane that has made my wife feel better and get rid of her MS symptoms.

All the best.

LDNAwareAdvocate · Newbie Joined: Jan 17, 2010 Posts: 8

I'm glad your wife is feeling better. I'm sure you were scared for her just like my husband was scared for me.

I have RRMS. I was diagnosed about four years ago. I have been on Avonex, Copaxone, Tysabri and now LDN. I've been on LDN for eight months now. It has been the best thing I have ever done. I'm taking 4.5mg.

You are also right; Copaxone is the only DMD that can be used with LDN. The others are immune suppressants and should not be used with it. I chose, however, to not use the two together. I'm taking LDN as a montherapy.

Have you also been told that LDN can increase candida in the body if one already has a propensity to it? I've been told that, so I have eliminated gluten, soy, dairy and sugar from my diet. It really has helped!

Feel free to contact me if you have any questions!

sbr487 · Posted: Sat Feb 13, 2010 6:07 am Post subject:

Algis · Posted: Sat Feb 13, 2010 6:28 am Post subject:

If you are in Taiwan; I'll gladly help, PM me.

If I try to ship outside; nothing will reach you.... Even incense powder is prohibited. Taiwan is ~very~ protected regarding in/ex port of whatever; including our words I believe Laughing

Try a compounding pharmacy close to you. Pharmacist are more cooperative than doctors. especially LDN will and cannot do any harm...

Keep in touch Smile

sbr487 · Posted: Sat Feb 13, 2010 11:58 pm Post subject:

pgy · Family Member Joined: Oct 20, 2009 Posts: 25

We went to a compounding pharmacy and asked what doctors had prescibed it and away we went.

Algis · Posted: Sun Feb 14, 2010 1:05 am Post subject:

Glad if I can be of help.

A quick search about LDN and India; and I can come with this:

Quote from Yahoo!MyGroup lowdosenaltrexone on Jan28, 2010 by 'Sterling'

sbr487 · Posted: Sun Feb 14, 2010 7:10 am Post subject:

Algis · Posted: Mon Feb 15, 2010 2:29 am Post subject:

Mine is coming in powder by 1.5mg doses ready to mix in water. But if you only can get the 50mg tablet; you will have to play the chemist amateur a bit.

The original 50mg tablets are Naltrexone mixed with a filler (neutral substance to bind the Naltrexone in a tablet). Because you only need small quantities (hence LDN - Low Dose Naltrexone) you will reduce the tablet in powder. Then to quantify the needed amount you mix it with 50ml distilled water. After the solution rest for a while; that 'filler' will deposit on the bottom of the solution. Then use a syringe and draw 1.5/3/4.5 ml out of the solution; swallow it and you'll have your fix Smile

Hope it's clearer

sbr487 · Posted: Mon Feb 15, 2010 9:14 am Post subject:

Hi Algis,

Your instructions are very clear.
I tried ordering today from alldaychemist here in India.
Unfortunately, after completing the payment details on this site, I did not know what to do. Basically I did not see any option like ok/checkout etc.
So I am kind of stuck now.

If you have any clue about this, please let me know ...

Algis · Posted: Mon Feb 15, 2010 11:59 pm Post subject:

Sorry; as said before; I get it directly from my friend. I dont use to order things online; but it shall go smoothly. Call them?