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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Thu Dec 16th, 2010 04:11 |
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I just ran across the idea of using low dose naltrexone (someone with CFS who says his life was restored). This link explains what conditions it is used for off label and supposedly (one of the links at bottom of page) why it works.
Anyone with the science background to explain why this works and whether it would interfere with the MP (I know supplements and such are not recommended, though people do use some assistance here and there, and I'm wondering if it would be harmful to use on occasion and/or on a regular basis)?
http://www.ldnscience.org/what-is-ldn-used-for
Thanks!
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12/2006 (-2 mo); CFS FMS MCS COPD hypermob IBS/GERD osteopor food/animal/plant allergies; sleep difficulties, exhaustion, muscle weakness, pain, post exertional malaise; 25D<4 summer 2010
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Ron
Foundation Staff
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Posted: Thu Dec 16th, 2010 08:02 |
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Claire,
Over on CureMyTh1 there has been a discussion on LDN:
http://www.curemyth1.org/view_topic.php?id=3589
Best,
Ron
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MP Knowledge Base
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eClaire
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Posted: Thu Dec 16th, 2010 15:56 |
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Thanks for the link Ron... it would be interesting even if it were good for only intermittent use (e.g., when we had something we really had to do like make Christmas dinner )... as long as we knew we'd get relief. I will watch to see how this plays out.
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12/2006 (-2 mo); CFS FMS MCS COPD hypermob IBS/GERD osteopor food/animal/plant allergies; sleep difficulties, exhaustion, muscle weakness, pain, post exertional malaise; 25D<4 summer 2010
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Dec 16th, 2010 16:50 |
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Be very careful, Claire. One of our members fell unconscious when trying LDN. Luckily, her husband was ready to help... At this point in time I see more negatives than positives with LDN. IP may be a pain, but it has not killed anybody...
Last edited on Thu Dec 16th, 2010 23:15 by Dr Trevor Marshall
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eClaire
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| Location: | Virginia USA |
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Posted: Fri Dec 17th, 2010 23:43 |
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Oh... I'm not planning to try it unless it is better understood and added to the MP palliation list. However, it would be nice to get a break every once and a while from the exhaustion I feel.
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12/2006 (-2 mo); CFS FMS MCS COPD hypermob IBS/GERD osteopor food/animal/plant allergies; sleep difficulties, exhaustion, muscle weakness, pain, post exertional malaise; 25D<4 summer 2010
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Dec 18th, 2010 00:29 |
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I am working on some possibilities .. let's see what 2011 brings 
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Sat Dec 18th, 2010 04:09 |
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Where's the "like" button when you need it?
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12/2006 (-2 mo); CFS FMS MCS COPD hypermob IBS/GERD osteopor food/animal/plant allergies; sleep difficulties, exhaustion, muscle weakness, pain, post exertional malaise; 25D<4 summer 2010
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Aunt Diana
Support Team
| Joined: | Fri Sep 30th, 2005 |
| Location: | Boquette, Panama |
| Posts: | 1987 |
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Posted: Sun Dec 19th, 2010 04:40 |
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Claire,
I just read your recent post and feel the need to tell you that the constant exhaustion I used to feel is GONE! I do get tired after exertion and it takes me longer to recoup from strenuous activity, but I have forgotten the exhaustion part. (When I stop and think about it, to be honest, in our moving to a new country and all that has been involved I have had moments of exhaustion that probably took me longer to recover from than before I was ill...but I'm also 25 yrs older).
i can't pinpoint a time when that fatique left but this is my 5th anniversary on the MP, so I would guess sometime in the past year.
As Dr. Marshall says, once this process get started you just get better incrementally.
Right now I am dealing with some minor neuropathy as one nerve (stretching from my upper thigh to the knee on the outside of the leg)in my right thigh seems to be coming back to life, after feeling numb for 12+ years in that area. Sometimes the pain can be pretty intense but it signals such an improvement that I am happy to have it. Painkillers do take the edge off.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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Lee
Member
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Posted: Sun Dec 19th, 2010 13:30 |
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Lyrica got me over that "hump" that everyone speaks off. I do realize it dampened my immune system along with IP. If Lyrica could be used at a certain point in the MP it maybe useful ...maybe. It was not easy to quit as my immune system sure kicked in full force when I did ... I had to wean myself off of it carefully. Now, I use it only when I am desperate for a good nights sleep ... For me, getting good quality sleep, was the key to healing .... Lee
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MP-Feb05 ABX Breaks 7mth, 18mth,3yr,5yr 2003 Sarc, Hyper-flex FM, Hashimotos, COPD, skin, joint pain and Glaucoma
2010 D25-4.8
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
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Posted: Sun Dec 19th, 2010 19:56 |
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Thanks to both of you.
I am four years in now, and I've had imperceptible 25 D since about 6 months in. I can run more errands in general. However, the exhaustion still dominates most of my waking hours, and I can crash easily and heavily and the lights at TJMaxx are like kryptonite to me. Still, I wear no NoIRs indoors, allow some natural light in the house now, and sleep is more abundant and becoming more reliable. Indeed I feel much worse when I have a few hours of sleep. I used to feel better when that happened. So, I actually seem to need 7 to 8 hours of sleep now.
Overall, I remain hopeful but burned out.
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12/2006 (-2 mo); CFS FMS MCS COPD hypermob IBS/GERD osteopor food/animal/plant allergies; sleep difficulties, exhaustion, muscle weakness, pain, post exertional malaise; 25D<4 summer 2010
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