I've been taking ldn since 7/15 and I can't say I find my life much different. I've been ill (flu, cold/virus, sinus problems) three times since Nov so in terms of helping to 'balance' my immunity I can't see any evidence of that. I'm about to have my thyroid antibodies tested and I hope to see some results there or I think I'm going to ditch it.
I understand there are doctors who are taking it themselves as a kind of insurance (it's meant to be a cancer preventative and allsorts) and it's being used to treat MS so I guess it isn't entirely nonsense but I'm struggling to find a reason to take it. It is very awkward to take (needs refrigeration) and now that I've raised my dose the constipation is a kind of daily water torture, death of a thousand cuts or whatever, sorry for mixing my metaphors. I'm now taking 4000iu vit c per day to deal w it and it helps but does not entirely restore normality. I was so pleased when t3 sorted out my bowel and this just feels like several steps back.
There was a time when every thyroid test showed I was a bit overmedicated so I reduced my meds several times and it seemed I genuinely needed less, which I put down to the ldn. Then I went hypo and meds went back up so I guess that was a coincidence.
Just having a moan about it really but I don't see a lot of folk here who take it so I may just be talking to myself.
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puncturedbicycle
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Hi Louise. Yes I am, but I can't really figure out that forum. It seems mainly to be one individual posting. I had a chat there when I swapped from capsules to drops but mainly the advice was to ask an ldn-experienced doctor. If I had one I guess I wouldn't be on the forum, ha.
It is very frustrating. The doc who prescribes says to ask the pharmacy. The pharmacy say they don't know, what does the doc say. I emailed the well-known pharmacist in Florida and got no reply. My gp is better than most in that she is allowing me to stay on t3 but as I currently have her support I'm reluctant to out myself as someone who buys meds online and if she has even heard of ldn I'll eat my hat.
Between my thyroid/adrenal issues and this disappointment w ldn I am at a bit of a low ebb.
I am not taking it but have done a bit of research while investigating my options and it seems it does take some skill to manage it therefore I can understand the advice you were given about the doctor. As far as I know there is a clinic in London (private of course) where they prescribe it for autoimmune conditions and the pharmacy in Scotland you get it from compounded according to this prescription.
I presume you might also know it already but I found this link quite useful
It does seem from various sources it works very well for some people but it might be something like 30% of the overall number who tried it so no guarantees as usual I'm afraid.
Yes, I get it from the Scottish pharmacy where I assume everyone else gets it from but as w the doctor no one seems to want to discuss any specifics about treatment. The pharmacist was supposed to contact me on several occasions but never did.
Can you remember where you saw the 30% effectiveness stats? ldninfo.org is saying 99%+ effectiveness in MS patients, 85% of AIDS patients w no detectable HIV, 50% effectiveness for treatment-resistant cancers etc: ldninfo.org/#What_diseases_...
I was a member of a fb group that I thought might be helpful but when people had questions, maybe about something they were trying to figure out w dosing or side effects, the moderator kept calling them out on the carpet for not being positive enough, as if that was the magic that made ldn work. It was quite bizarre and for obvious reasons little helpful interaction went on there. I have yet to find another. There's meant to be a forum on ldninfo.org but I can't find it.
Anyway thank you for your reply, I appreciate it. Are you still thinking about trying it? I'm glad I tried it, but for me there doesn't seem to be a compelling reason to keep taking it.
Yes I am still thinking about trying it but at the moment I am in the midst of BHRT treatment and until all my other hormones finally settle down I cannot really work on the thyroid. But I had a preliminary talk with my doctor at Marion Gluck clinic and learnt they are looking into ldn as one of the options to offer to patients, especially someone like me with Hashi's. As I said earlier, the other London clinic I found offers the ldn treatment already in the context of autoimmune diseases so I would guess they have doctors who specialise in this therapy.
The 30% if I remember correctly might have come from Izabells Wentz's article on her website or from the Thyroid Secret series. I know she was/is taking it so she has done her research for sure.
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I'm now taking 4000iu vit c per day to deal w it and it helps but does not entirely restore normality. I was so pleased when t3 sorted out my bowel and this just feels like several steps back. 
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