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 02-09-2016, 07:22 AM #11
BioBased BioBased is offline
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Blazed,

Please bear with me and my LDN questions. What was your bad reaction? And in what form where you taking it? Because you took LDN so long ago it may be that there is updated info of which you may not be aware.

I belong to an LDN FB group which has a vast number of members and massive amounts of in depth information. It is known that fillers can cause negative reactions, not the LDN. Improper dosing can run the gamut of doing nothing to causing violent nausea. Some LDN has been found to be compounded with next to no potency and with certain fillers that cause allergic reactions.

Retrying LDN in the pure powder form using an acidophilus powder as a filler has been successful for posters who had reactions to other fillers. Also mixing it yourself can be beneficial, because you can slowly increase the dose until you find the optimum one for you. Many members have more informed doctors, who give them prescriptions for the 50mg pills and instruct them to do this. It is also the most affordable way to take LDN.

Also at the beginning of taking LDN at higher doses people "herx," it actually indicates the LDN is working. I did not have this reaction-probably, because I started "low and went slow."
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Old 02-09-2016, 04:22 PM #12
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Quote:
Originally Posted by BioBased View Post
Blazed,

Please bear with me and my LDN questions. What was your bad reaction? And in what form where you taking it? Because you took LDN so long ago it may be that there is updated info of which you may not be aware.

I belong to an LDN FB group which has a vast number of members and massive amounts of in depth information. It is known that fillers can cause negative reactions, not the LDN. Improper dosing can run the gamut of doing nothing to causing violent nausea. Some LDN has been found to be compounded with next to no potency and with certain fillers that cause allergic reactions.

Retrying LDN in the pure powder form using an acidophilus powder as a filler has been successful for posters who had reactions to other fillers. Also mixing it yourself can be beneficial, because you can slowly increase the dose until you find the optimum one for you. Many members have more informed doctors, who give them prescriptions for the 50mg pills and instruct them to do this. It is also the most affordable way to take LDN.

Also at the beginning of taking LDN at higher doses people "herx," it actually indicates the LDN is working. I did not have this reaction-probably, because I started "low and went slow."
I realize when I said that it was the first thing they tried it sounded like it was when i was 11, but it was the first thing they tried after they finally accepted and diagnosed it in my stomach, so that was about 4 months ago.
I had gotten very bad hives, along with nasty looking blisters that would pop and be gross, and then my mouth and throat would swell up, which is my most common reaction to most medicines, I am allergic to A LOT of things lol. So they just refuse to give it to me now as my reaction is life threading. I also am unable to swallow any medicine because it will go to to my stomach. Which would cause me to vomit it up with in minutes. Which is why my feeding tube goes past my stomach to the small intestine. If I was capable of trying it again I would but I dont think its possible. Also you mentioned that some forms of it can be mixed with something else, I believe is what you said, and I was given just pure ldn with nothing else . thank you sooooooo much for suggesting it though. I'm glad there are people trying to help, I just wish I had more options XD lol. Why does my body hate me So much.
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Old 02-10-2016, 04:04 AM #13
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Hi there..

I too do Ketamine infusion at Stanford about every 3-4 months for 5 days in-pt. Mine always take about two weeks to kick in and so far they have all been slightly different in how well I respond or how long it lasts. I have had full body CRPS II and Arachnoiditis since 2004. It started after a back surgery. Woke with Pain in leg and foot and eventually it spread everywhere.

Anyway.. All this to say you might consider MBSR http://www.mindfullivingprograms.com/whatMBSR.php

Dr. Jon Kabat-Zinn has a fantastic book called Full Catastrophe Living
http://www.amazon.com/Full-Catastrop.../dp/B00115MP3S

You might be able to get it from the library. If you google his name you can find tons of his stuff on YouTube. It is helpful. Another tool in your box.
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 02-10-2016, 06:07 AM #14
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Blazed,

Your story breaks my heart. I hope there is something/someone that can bring you relief.

There is a known combination of two items commonly used in LDN compounding which can cause the exact reaction you describe. http://naturallysavvy.com/eat/this-i...te-is-so-scary.

LDN can be compounded into a transdermal cream. I have read that it is made specifically for children who can not ingest LDN.

Last edited by BioBased; 02-10-2016 at 06:28 AM.
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