I am *very* excited to start this! I think that I am going to begin it tomorrow, pending my doc being cool with me starting it (if he's not, I'll have to find another way....).
Anyway, I'm really keen to hear about any success stories out there. I think that hearing those will continue to buoy my spirits.
Cheers everyone...
Danny
Posts: 116 | From North Carolina | Registered: Apr 2011
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posted
I don't think LDN works magically, but it does over time really boost your immune system.
I've taken it for about 1 1/2 years, and felt that it was helping. Most recently my CD57 was 227, which is high, and a positive sign that the immune system is back.
Good luck, and hope you get the script from your doctor...
(FYI: I order mine from a compounding pharmacy, Gideon's in NY, and the cost is less than $50 for three months, including shipping).
Posts: 964 | From san diego | Registered: Oct 2009
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That is very encouraging news, especially the part about the affordability! At least *something* to do with this dumb disease is affordable!!! hahaha....
Danny :-)
Posts: 116 | From North Carolina | Registered: Apr 2011
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posted
I like it. It took my body about a month to get used to it, but it has def helped me.
Baileypup: That's a really good price, mine is $38 for 1 month. Does your doctor call a script in?
Posts: 908 | From Albany | Registered: Nov 2008
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For those just starting LDN, please have your doctor titrate the dose for the first three months. (1.5mg. 3mg. 4mg.)
Posts: 964 | From san diego | Registered: Oct 2009
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I checked out that website, and indeed, they list several places to get it, but Gideon's looks like a pretty good deal to me too. :-)
Thanks again,
Danny
Posts: 116 | From North Carolina | Registered: Apr 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I had some trouble with it that is very rare so I won't elaborate. I felt emotionally very calm and happy so I was very disappointed when I could not continue taking it. I hope I can get started back.
But I just wanted to let you know that Dr. Zagon has done extensive research on LDN for decades and he says you do not have to take it at night. If it disturbs your sleep, just take it in the morning.
He also says research has shown that no one should take more than 3 mg. for the best effect. It is a very good idea to start very low and work up. One way you can do this is to mix the capsule in water and withdraw the amount of water that would equal what you want to take - so if you have a 3 mg capsule mixed in 3 mm water, 1 mm of water would have 1 mg of LND. Hope you get that.
There is a site online where you can get the names of doctors in your area that prescribe it so don't give up if this doctor is not on board. I think it is an amazing discovery. I don't know why I had to be such a weirdo.
Gideon's is a good pharmacy and so is Skip's in FL. You can reliable pharmacies on the LDN homepage.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Thanks for the pharmacy info
Posts: 908 | From Albany | Registered: Nov 2008
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Kudzuslipper
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Member # 31915
posted
I also am going to talk with my llmd next time about it. She mentioned it, but I wanted to do one thing at a time and that one thing was flagyl.
I know. It supposed to help re regulate your immune system...but how does that equate to how you feel? And with Lyme symptoms?
The only thing that worries me about it is you can't take tramadol with it, and that is the only thing that takes the edge off for me.
Posts: 1728 | From USA | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
LDN increases endorphins which are the feel good hormones. Other things that increase endorphins are exercise (aerobic) and acupuncture. I felt very happy while on it.
It blocks opiate receptors for a few hours which is why it is recommended to take it at night so you are asleep when this happens. For me, this just felt like a cup of coffee - not bad.
It was previously believed the reason you were supposed to take it at bedtime was because you would produce more endorphins during your sleep but according to all the latest research, that is not true. It was also previously believed you should take it on an empty stomach but now they are saying that does not matter either.
You do not take LDN with pain killers because when it is blocking the opiate receptors the pain killers will not work but endorphins produced by LDN is very good for reducing pain.
You do not take it with immune suppressing drugs because they are counter productive. LDN boosts and REGULATES the immune system. It increases regulatory T- cells to halt auto immune attacks.
You probably should not take it with anti depression drugs because it is good for depression on it's own.
Otherwise you can take it with just about any other drug used for lyme disases or cancer.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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CD57
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Member # 11749
posted
We have two immune systems, the innate and the acquired. I think that LDN helps one but not the other, I think it's the acquired. Anyone know?
Also: it's supposed to work long term, right?
Posts: 3528 | From US | Registered: Apr 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am guessing acquired is when you develop immunity such as from a vaccine or from having a disease. I can't answer that for sure.
I can tell you LDN is extremely effective to regulate/modulate the immune system. It is very helpful for auto immune diseases. Increasing endorphins boosts the production of regulatory T cells up to 300%, which call off the attack of the killer cells that are destroying the body.
Auto immune disease is kind of like an army with no commanding officers so there is a lot of friendly fire. In the past it was thought it was an overactive immune system that needed to be suppressed but actually it just needs to be regulated. If you suppress the immune system too much, then the "army" is destroyed and can't respond to a genuine attack which is why many drugs developed to suppress the immune system cause cancer.
People with MS, Lupus, RA etc have to take LDN for life. When they quit taking it, the killer cells take over and continue to damage the body.
LDN is also used to control cancer growth. Cancer patients also have to take LDN for life or the cancer will come back. It helps with pain by reducing inflammation.
I am not sure how it helps with lyme disease. Lyme often sets up auto immunity which causes inflammation. It might also boost the immune system so it responds better to the pathogens. Perhaps it just makes the immune system "smarter" by boosting the regulatory T cells - the "brains" of the immune system.
In the case of lyme disease, once you are in remission, you might be able to quit taking LDN.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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CD57
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Member # 11749
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i took it for about 3 months and don't remember noticing much....is it something that has to be taken for a long time before you notice a difference?
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
i took it for about 3 months and don't remember noticing much....is it something that has to be taken for a long time before you notice a difference?
how much did you take nefferdun, ie 3mg?
Posts: 3528 | From US | Registered: Apr 2007
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