A full web search would also bring up notes from other sites. Cross search both: lyme, naltrexone -- and: lyme, LDN -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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- Lyme is discussed in the book with one well known and respected LLMD (who is ILADS member & presenter) saying that about 75% of those patients of his who (in addition to a full treatment protocol addressing infections) tried this found some help from it.
Another LLMD is said to say that about half of those with lyme he's treated with adjunct LND have seen some improvement.
Ellen101
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Member # 35432
posted
I am currently on LDN. I can't really say I'm taking it as a treatment for lyme, more so as a treatment to address autoimmune stuff. I have had to stop it 3 times due to an increase in pain after a few doses. I am now taking it every other night and so far so good..
Posts: 1748 | From United States | Registered: Dec 2011
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Judie
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Tried it for pain. It made me feel high as a kite and like I couldn't come down. It went on this way for a week.
The way it worked for pain management for me was to make me not care about the pain and feel checked out.
I needed to stop after a week because I couldn't mentally function.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
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posted
- Funny, I'm not high but I also just can't get anything done. I'm down to the wire with getting some paper work submitted and I just can focus to do it.
I usually have trouble with forms, organizing and anything with numbers but it's far worse this time around. Must get it in the mail by tomorrow and I still just can't get my brain to work right.
I had hoped this would help but, in just 3 weeks, that has not happened. I do feel much more dazed.
The successes reported (in the book) with this are so fabulous that I want to hold on, though. Yet, some of the reported successes may be in those who do not also have lyme.
Maybe I should skip it tonight to see if I can get my paperwork done and in the post tomorrow.
Miss the days when diet coke and coffee would wake me up. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lax mom
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posted
My husband and I have both been on it for a year. It helps with my pain/headaches.
I have to take it in the morning because I have terrible nightmares when I take it at night. (Supposedly the nightmares go away after 10 days, but not for me. Also, supposedly if you eat some protein before bed, it's supposed to prevent the nightmares, but not for me).
Keebler: are you weaning up slowly? I took 1mg for over a month, then 2, then 3, then 4.5. It took me a long time to get to the full dose.
posted
Thanks everyone for this great info. I go to my ILADS doc on Monday. Say a prayer!
Posts: 84 | From New Jersey | Registered: Aug 2010
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Judie
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posted
"Maybe I should skip it tonight to see if I can get my paperwork done and in the post tomorrow."
I did immediately notice a difference the morning after I stopped taking it. I hope it'll be as quick for you.
It took about a day or two for me to feel completely back to myself.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lax mom, I may have increased too soon but have been a the intermediated dose for 2 weeks. thanks for your details.
I have found that I just feel odd on LDN. Just odd. And I thought I was used to feeling odd after all these years but odd just gets - well, more odd. It's just that the success stories are so excellent and I want that, too.
Thanks, Judie. I did skip it last night but still can't do any thinking work today. I can think to write some things but when forms, numbers or dates, or money are involved, it's like Greek. Forms, especially just a swirl of grey.
Well, I've been on computer, trying to wake up my brain but my paperwork just can't focus my eyes or brain. Will likely miss the mailing deadline but i just can't do it. Even my sardine "breakfast for my brain" has lost power.
Still, maybe later. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nefferdun
Frequent Contributor (1K+ posts)
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posted
The first few times I tried LDN, I had frequent urination so bad I could not continue to take it. I thought I was have a reaction to the LDN but a few months later I tested positive for protomyxzoa. Bladder irritation is one of the symptoms of PR.
At the time of my test I was also having symptoms of being hyperthyroid - vicious insomnia, irritability and weight loss in spite of constant eating. I knew I had Hashimoto's and felt I was having a flare. PR also causes auto immune problems.
After being on ivermectin for about a month for the protomyzoa I decided I needed to try the LDN to try to calm my thyroid storm. I began with 0.5 mg and worked up quickly because I had no problems. I am sure I was herxing the first few times I tried it.
When I was at 3 mg, the thyroid quickly calmed down and I felt very well. I even got off the ivermectin and was drug free except for the LDN for about 6 months.
I have always had a very low body temperature between 96.8 and 97 F. Now for the first time ever, my body temperature is normal. I have more energy. I eat like a horse and never gain weight. I can think better.
I still get the PR symptoms back now and then but I feel that is usually when I stray from the low fat diet. It doesn't usually take much ivermectin to get rid of the symptoms. It is never really serious but I know it can be if I don't take it seriously.
My son has Latent Auto-immune Diabetes in Adults (LADA). It is type one but takes up to two years to completely destroy the beta cells instead of a few weeks/months as in juvenile diabetes.
I had a hard time talking him into giving LDN a try but he started it about 1.5 years ago. He was diagnosed in October of 2010 so it has been nearly 3 years. He is doing extremely well and would be considered in remission by doctor standards.
Usually a person his size would need about 80 units of insulin a day. He takes 10 to 16 units. To give you an idea of low this is, our cat has type two diabetes and he gets ten units a day.
LDN is a miracle. I don't know why some of you are having problems but I tend to think it might be stimulating your immune system and causing a herx.
-------------------- 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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