Thursday, January 3, 2013

When low dose Naltrexone stopped working


Here's my story about my short but torrid love affair with LDN. I found out I had Hashimoto's Thyrioditis in 2009 and was desperately trying to find some relief for the symptoms, after quite a few years of family, friends, and doctors telling me I was just "stressed" and all the weird ailments I was having were in my head. I took Armour thyroid which ended up making me sicker, I went gluten free, dairy free (for the most part, occasional cheeses and butter didn't kill me). But still no avail. My hair was still falling out in clumps, major mood swings, severe insomnia, severe memory loss (like I couldn't remember what I did the day before), alternating constipation and diarrhea (the Armour gave me horrible diarrhea). The frustration and fear just kept mounting. I felt like I was trying really hard to fix this and was getting nowhere. I do still smoke, which I know doesn't help any of this, but I've been down to just a few a day for years. Anyway, my father (who is an acupuncturist and has knowledge on all the new therapies) told me about low dose Naltrexone. I'd never heard of it and had tried to stay away from any hard pharmaceuticals because they seemed to cause more harm then good. But I was desperate and was willing to put up with a few side effects if it worked and from what I was reading there weren't many, except insomnia. So I called some compounding pharmacies to see who actually prescribed this drug (I assumed there weren't many) and found a doctor I had actually seen before. It had been awhile and I wasn't sure if he knew much about LDN, so I brought my labs and articles and crossed my fingers. He wrote me a script for 1.5 mg without batting an eye (very nice doctor but very busy and scattered brained. Kind of a wingnut). So I went home, got ready for bed, and took it at night just like they suggested. I didn't sleep, but was in a sort of twilight. Like I was hovering right above REM but never able to dream, but I was used to insomnia and could live with it. But when I got out of bed that morning I couldn't believe how good I felt. My hair wasn't falling out and felt stronger!! This was a huge deal as I had cried myself to sleep about this many a night and has tried soooo many things to fix it. But I noticed my stomach didn't hurt, I could think clearer, even my back felt better. It worked so fast and so powerfully, I was blown away. I didn't want to say "wonder drug" but that's what I was thinking... the only problem was the insomnia...it was pretty bad. I stayed up for almost eight days at one point. I tried heavy duty sleeping pills (even Seroquil, which was horrible), and still I was awake. I played with the dosing and the timing and finally got a good combination. I didn't need the full 1.5 mg, it seemed like a half of that in the morning worked fine. I know they say it works better at night but I am here to tell you that the morning does too. So for over a year, I felt great. Not to say everything was PERFECT all the time, but I didn't have to worry about my hair, I could eat without a bunch of digestion issues (I stayed gluten free but was a little lax on the dairy), and my moods were alot more stable, I could work out again, where before it would wreck me just to do some light cardio... Then something happened. Slowly but surely all the symptoms came back. It was gradual, but I was so in tune with my body, I could feel the changes, and started getting scared. I researched LDN like crazy, and there wasn't a whole lot of information on what to do to when it stops working. I tried the obvious things, like switching the dose, taking a week off. I thought maybe it was the filler so I got it from  a different compounding pharmacy. The filler in that actually made me feel kind of aggressive, so I stopped taking that. I read that LDN can cause excessive candida and won't work if you have too much so I started doing a no sugar/no carb for my candida which made me lose too much weight and did a number on my system. I've done acupuncture, quantum biofeedback, and even ozone therapy which was super expensive and pretty painful. All of this just in the threadbare hope that the LDN would work again. I'm not a doctor and some of the research on LDN is too scientific with opiate receptors, etc. I don't want to give up on it, but it's been months since it's done anything... I know this is a very long blog, but I felt obligated to share my experience since most of the help I get is through other people's personal experiences with this or anything else. If you have found LDN, for whatever ailment you have, I hope it works as well for you as it did for me. And continues too.

18 comments:

  1. Did you ever try to titrate up your dose to the max maintenance dose of 4.5mg?

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  2. 4.5 is the dose that most adults need for sustained benefits from ldn.

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  3. apparently the 2 people that commented on my blog didn't actually read it. I tried raising the dose and ended up getting sicker. I am part of the low dose naltrexone group on Facebook, and no one wants to hear that there is a possibility that LDN may not work for some people after a given time. It has been the heartbreak of my life that this drug that helped me so much now does not. This drug works differently for all different types of people and diseases. I have researched, called almost every compounding pharmacy in the country and spoken to several doctors. No one knows why it doesn't work for me anymore. Be grateful if you're reading this and it still does. But please don't give me advice that I've already taken

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    1. This comment has been removed by a blog administrator.

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    2. I think it is fine to stop. I would work with a doctor, discuss your feelings, what your goals for health are, and keep moving forward. I may be in the same boat (though I am likely going to call it quits much faster than yourself). I am exploring the possibility of PEA Palmitoylethanolamide, I have absolutely no idea if it will help, but I figure its worth trying. I happened upon the info from a doctors site in San Diego.

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  4. Did you try LDN in transdermal cream form? Candida and/or bacterial infections supposedly block the absorption of LDN so the cream form may allow for better absorption by bypassing the digestive tract.

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  5. https://sites.google.com/site/whenldnisnotworking

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  6. https://sites.google.com/site/whenldnisnotworking

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  7. https://sites.google.com/site/whenldnisnotworking

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  8. You need to go on diflucan 200 mg per day for 2 to 3 weeks to rid of possible candida and then try again. No sugar diets don't eradicate candida effectively. You can get a diagnosis of candida to make sure that it may be the culprit. I had the same thing happen to me. After 6 years it stopped working due to candida overgrowth

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  9. You need to go on diflucan 200 mg per day for 2 to 3 weeks to rid of possible candida and then try again. No sugar diets don't eradicate candida effectively. You can get a diagnosis of candida to make sure that it may be the culprit. I had the same thing happen to me. After 6 years it stopped working due to candida overgrowth

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  10. Same thing happened to me. I went on LDN last April. It was working great and felt great. I have Hashis was diagnosed in 2009. In 2012 after going through a divorce I started having symptoms. Brain fog,heart palps,anxiety. Was on low dose xanax twice a day as directed. I decided to go off the xanax the same month I went on LDN because I thought the xanax might be causing the anxiety. Started to taper off it and went into full blown accute withdrawals in July. My new doc gave me a weeks worth of Valium and told me to stop taking the xanax and taper off the Valium for one week. It worked and was feeling better. That same month is when my antibodies started to raise again after being cut in half from the LDN. Skip at skips and my doctor lowered my dose and after 2 months antibodies were back up to where they were to begin with. The end of December I went on a candida antibiotic that made me sick. Gave me diarrhea. Trying to clean up my diet before I try it again.

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  11. When I tried going from 1.5 to 3. I thought I was gonna die. I had to go to 2.0 then 2.5 and now I need to go up to 3.0

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  12. Lisa-I'm curious as to if you've returned or if this drug has worked again for you. I'm being pushed into trying it, though I can't afford even the minimal cost of it at the moment, at the expense of taking away what little works for my pain as it is(and I went through extensive amounts of medication and diets myself previously). I, however, have fibromyalgia and have seen the studies are not quite as promising for fibro. Yet the pain doctor I saw was from Stanford and I gather they are where this LDN study is based. Anyhow-I'm interested to hear more from you and others.

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  13. I have relapsing remitting MS and my symptoms include off balance, fatigue, dizziness and some headaches. I had tried different treatments over the past 16 years when I was in exacerbation and the side affects were horrible. I had heard and read about low dose naltrexone and though I have nothing to lose by trying it. I started at the 4.5 dose at night and after about 2 months all of my symptoms went away. I felt so good, had my strength back, no more off balance and headaches and was very focused. This lasted for 18 months but 6 weeks ago my symptoms returned. I am so disappointed and worried and wonder if anyone experienced this and continued with the LDN and felt good again, Thank you

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  14. I'm using my wife's phone to read this blog, I recommend taking a drug holiday from LDN when you think the drug has stopped working; minimum three days and ideally one week. Then restart the LDN. It has been a strategy that has worked for me .LDN has been great for my FM. Peter

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    1. Thanks for sharing that as I am gonna try that . Have been on it for about 6 months ..now at 4 mg in the a.m. and 2 in the evening but it is not working as well as in the beginning.

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