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Grand Magnate
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Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
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Grand Magnate
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
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There's a lady I know, a mother from my daughter's ball team, and she had gotten a rx for LDN months ago from her neuro. She decided to try naturalpathic options first for about 6 months (combined with Rebif), and when those didn't seem to help, she went with the LDN (+Rebif).
Lately I've heard of a number of people using the interferons with LDN, but I know that Dr B didn't recommend it. They did that small 2007 trial in San Fran that didn't seem to indicate a contradiction, so maybe that's why some doctors (and hence myself as well) are thinking it might be ok.
She started out at 1.5mg because she is very sensitive to most meds, and has other very troubling (maybe MS-related) health issues; bowels, stomach, bladder, etc.
The first thing she noticed is that her tongue was tingling, and of course that made her nervous. I suggested it might be the "awakening of nerves", but she was afraid it was an allergic reaction (she is on liquid, no fillers). Then she noticed the spasticity increase, and that made her afraid she was headed into an attack. Due to the mouth reaction, I suggested she cut down to .5mg to start because if it was an allergic reaction, she should continue to get that reaction even on a smaller dose.
My pharmacy checked into allergic reactions to Naltrexone, and found absolutely nothing on that if the drug is PURE naltrexone. The tingling in her mouth stopped, but the spasticity/weakness continued. In the end, she decided to go off LDN for a bit and see what happened when that occurred. Nothing much changed for the worse or better, except the same spasticity/weakness.
She contacted Skip and he advised she should not use Rebif while on LDN. I was actually a little surprised that is still the recommendation, given the short/small trial that showed there appeared to be no safety issue. Also, so many neuro's seem to be rxing it to those on interferons now, and most seem to be still getting benefit from LDN with that combo.
Anyway, this wasn't a success story, YET anyway (she is going off Rebif in the new year and wants to try LDN again), but I wanted to post it because it is a reminder that:
- maybe interferons shouldn't be used with LDN
- people need to be aware that side-effects or "awakening" may occur in the early days/weeks, but not to be too frightened of that
- ultimately LDN might not work out so well with some patients
Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas .
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