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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 03-19-2017, 10:26 AM   #31
Shay08
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Have you tried weening off any of them? I found I only needed LDN when I was regularly going for PT in warm salt water, unfortunately since that was terminated by WC I have had multiple flares, which require me to take tramadol. I believe that short stints of drugs are vital to control the worse pain, but I fear that long term they negatively alter our bio-chemistry.

Because you take LDN you might be interested in the liver cleanse drink I make. It's delicious. Simply wash and chop a whole lemon into quarters or smaller. Add to a food processor,blender or vitamix, along with 2 tablespoons of olive oil and blend with four cups of filtered water. Drain through a sieve, into a glass jar. Store in the refrigerator. To drink: pour 4-6 oz into a glass, add some vanilla, stevia and ice cubes.
Thanks for posting your liver cleanse drink. After using lemon juice drinks after my ketamine treatments, my follow up blood tests finally started to come back normal. The lemon unfortunately started to aggravate my GERD so I switched to lots of broccoli and cauliflower which I read could aid in cleansing the liver. No problems after using them either.
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Old 03-28-2017, 11:10 PM   #32
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Hi Numb. I've never tried it but have heard about it. My pm dr prescribes gabapentin and pain meds for me and they help manage my rsd pain a little better so I am sticking with them for now. But if they ever stop working I will ask my pm dr about LDN. If you try it I hope it helps.
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Old 03-28-2017, 11:48 PM   #33
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I have stopped my LDN, due to unsurance issues, which I should have cleared up soon. I also switched to Wellbutrin from Lexapro. I am having a miserable time. Not sure if its the one or the other or both, but this bleeping bleeps!
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Old 03-29-2017, 08:21 AM   #34
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This free-access review is a balanced summary of the potential risks and benefits of LDN treatment https://www.ncbi.nlm.nih.gov/pubmed/24526250.
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Old 03-31-2017, 12:14 PM   #35
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I have stopped my LDN, due to unsurance issues, which I should have cleared up soon. I also switched to Wellbutrin from Lexapro. I am having a miserable time. Not sure if its the one or the other or both, but this bleeping bleeps!
I get mine on my own dime.Five months of 4.5mgs is 90 at Belmar in CO.
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Old 06-09-2017, 10:55 PM   #36
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Hello,
I did not realize I have not returned to post my result for the LDN. I tried it for a few months but eventually stopped because It did not seem to make any difference on my pain. However, I have found soaking/swimming in the ocean helping with my PN and RSD pains tremendously. It is too bad I can't access to a salt water pool or warm ocean. I accidentally discovered this while I was vacationing in Hawaii. Try it if you can access to a salt pool or warm ocean.
Good luck and take care,
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Old 06-10-2017, 04:22 AM   #37
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Numb,
It's unfortunate that you had no success with LDN, but may I ask if you switched compounders before you threw in the towel? I ask, because it is well documented by Dr. Bihari that patients often get no potency, low potency or slow release LDN. This is why he advocated DIY LDN. You cannot fully trust the compounded medications, they are not FDA approved.

Recently one CRPSer wrote on the LDN FB page that she had instant relief.

Others write it took a year. I am now grateful that no doctor would prescribe it for me originally, which forced me into DIY. What if I had gotten no potency LDN I might never have recovered? I am more leery than average, due to a previous compounding failure that cost me half my hearing in one ear.

I also wonder if some think they will lose their business if LDN proves to be too successful, so they purposefully compound less than effective LDN.

I wish all the LDN products that do not work could be checked for potency.
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Old 06-10-2017, 01:13 PM   #38
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Posting to add this info: LDN may not work if you have candida, yeast.
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Old 06-10-2017, 05:25 PM   #39
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Biobased,
I diluted it with the distilled water. I did not have the pharm to compound it since my doctor had prescribed it at 50 mg which was the standard size.
I wonder was it the problem that might have reduced the effectiveness.
Thanks.
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Old 06-11-2017, 02:41 AM   #40
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Biobased,
I diluted it with the distilled water. I did not have the pharm to compound it since my doctor had prescribed it at 50 mg which was the standard size.
I wonder was it the problem that might have reduced the effectiveness.
Thanks.
Numb
You may be in the twenty percent group who due to genetics will have no response or you may need to double dose. Some take it twice a day. Some take as little as 1mg with relief and some also need to take up to 12 mgs. I had no idea that there were so many variables, until I joined the endorphins FB group. Also, there are many stories of people stopping LDN because they believe it isn't working and afterward they realize there were subtle improvements.

I wish you had luck, because it is so distressing to read that you did not, considering my success.

I was able to dance twice at my daughter's wedding, but I did suffer the entire night and two days afterward with a flare. But these flares from "over doing it" while painful, cannot compare to what I suffered with before LDN. I believe if I had gotten LDN earlier I might have had a full remission.
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