My wife and ldn

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

My wife and ldn

Postby pgy » Mon Feb 01, 2010 5:27 pm

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
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Postby Sax » Wed Feb 03, 2010 6:10 pm

hi. I'm about to start. Can you tell me what dose your wife started with and takes now?
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Postby pgy » Wed Feb 03, 2010 9:57 pm

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
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Postby Algis » Wed Feb 03, 2010 10:17 pm

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 :)
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Postby pgy » Thu Feb 04, 2010 12:36 am

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.
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Postby LDNAwareAdvocate » Mon Feb 08, 2010 12:33 pm

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!
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Postby sbr487 » Sat Feb 13, 2010 5:07 am

Algis wrote: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 :)


Algis,

Any idea how it can be got in Asian region?
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Postby Algis » Sat Feb 13, 2010 5:28 am

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 :lol:

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

Keep in touch :)
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Postby sbr487 » Sat Feb 13, 2010 10:58 pm

Algis wrote: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 :lol:

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

Keep in touch :)


Algis, thanks a lot. You are such an angel.
I have many questions so that I can manage this on my own. Like,

1) What is the method to get these medications?
2) Do I need Dr's prescription at all?

Basically if you explain your journey on LDN, that would help me a lot ...

PS: I am in India
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Postby pgy » Sun Feb 14, 2010 12:04 am

We went to a compounding pharmacy and asked what doctors had prescibed it and away we went.
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Postby Algis » Sun Feb 14, 2010 12:05 am

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'

"I bought LDN from "unitedpharmacies.com". It comes from India and they call it Nodict, it comes in a foil wrapped pack with the mfg date (03/2009) and an expiration date (02/2012).
I use it as others have suggested, that is I mix the 50 mg tablet with 50 ml of distilled water in a small brown bottle, shake until it dissolves and then let it sit. The filler will drop out of solution. Do not shake it again. Draw off the ldn and enjoy
."


The link for that very product is:
http://www.unitedpharmacies.com/custome ... ing=nodict
It is listed at 28$ for 10 tablets of 50 mg.
You can go at least 3 months with this supply.

I cannot recommend that pharmacy. I really suggest you call a compounding pharmacist in your area first. He will also let you now if they need a prescription in India.

You may also try a standard pharmacy with any of the following brand:

Besides ReVia®, Naltrexone 50mg pills are marketed as Depade (Mallinckrodt Pharmaceuticals, US), Nalorex (Bristol-Myers Squibb, UK), Nodict (Sun Pharma, India), Naltima (INTAS, India), Narpan (Duopharma, Malaysia), Antaxone (Pharmazam, Spain), Celupan (Lacer, Spain), Narcoral (Siton, Italy), Nemexin (Bristol Myers Squibb, Germany), and also Revez, Naltrexona, and Naltrexonum.


"My" journey to LDN is very simple: I saw it could help while making informative search on the net. I came across the before mentioned Yahoo!MyGroup. I registered and have been in contact with a very nice, wise and helpful Lady: Aletha.
On her suggestion; I looked around. I am lucky in that I have a friend who's working in pharmcology unit at an hospital. She supply me with the LDN at about 15$ a month.

I started with 1.5mg for 10 days. upgraded to 3mg for 10 more days. And now on 4.5mg since 2008 and very happy with it.
Noticeable effects came on about 2 months after I started.
I have had wonderful dreams now and then, sometimes I awake during the night at 3:30/4:00 but return back to sleep almost immediately.

Hope this help; don't hesitate to use me if you need;

Cheers and good luck!
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Postby sbr487 » Sun Feb 14, 2010 6:10 am

The filler will drop out of solution. Do not shake it again. Draw off the ldn and enjoy."


Pardon if I did not catch the above sentence. What does filler will drop out of solution means? What does draw off the ldn mean?
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Postby Algis » Mon Feb 15, 2010 1:29 am

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 :)

Hope it's clearer
Last edited by Algis on Tue Feb 16, 2010 2:06 am, edited 1 time in total.
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Postby sbr487 » Mon Feb 15, 2010 8:14 am

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 ...
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Postby Algis » Mon Feb 15, 2010 10:59 pm

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?
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