Re: Use of LDN on polymyositis

[Guest guest]

Hi,

I do not know this disease at all, but I have learned that LDN is working really well for many auto immune diseases. LDN is considered as a mild medication, only leading to minimal side effects for some of the users often just the first weeks when starting to use it. The side effects for the users is most often either insomnia or waking up a couple of times during the night when the endorphine level is at it's highest production level. One often fall asleep just short time after waking up, so it's not too disturbing. The insomnia, if lasting for a long time could be better if using melatonin.

Since the side effects are so mild, and the dose of the pill each night isn't more than 4.5 mg (it's considered as a "homeopathic size") it could be worth a try?

I know a woman having an autoimmune disease that is not mentioned in here before, she wanted to try LDN, and her disease got really improved.

This disease is called arteritis temporalis. Her symptoms was severe headache and pain in a jaw, due to inflamed walls of small veins.

So, even auto immune diseases that we may not have any experience of may be helped by LDN. It's up to the family member to take the final decisions, and learn more about LDN.

You could find good information at

www.gazorpa.com

http://www.gazorpa.com/PatientGuide.html

www.ldninfo.org

Read those sites, and you know a lot to manage to talk her doctor into it :-)

Ingrid

[low dose naltrexone] Use of LDN on polymyositis

Dear forum,

I would like to know if anybody has heard of any case in which LDN has been used to treat polymyositis (a rare and serious autoimmune inflammatory muscle disease), or can refer me to contacts of doctors or institutions who may be able to provide more information.

We are fighting against time to find a treatment for a family member in very serious conditions.

Many thanks

Francesca Marotta

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[Guest guest]

Personally I find fretting about whether or not to

start LDN much like fussing about the arrangment of

deck chairs on the titanic just after it hit the

iceberg.

It should be one of the first considerations and the

consideration of it as an adjunct to other more

traditional therapy regimens when need arises.

Medical practitioners are always looking for the ONE

thing that works and sometimes that ONE thing just

isn't found. Juggling a number of meds makes

evaluation orders of magnitude more complex in

establishing what had what effect. Best thing is to

change one thing at a time, start simple and work

towards increasing complexity only if you need to.

And one more thing, just as a matter of understanding

receptor science. Likely the sleeplessness that I and

some others encounter early on is not because elevated

endorphins themselves but because the LDN funtionally

blocks the receptors and doesnt allow the cell to

respond to endorphins, functionally staving them of

endorphins, which indeed is the essence of the

negative feedback loop that LDN mediates. That's why

endorphin producing activities(!) or drugs that mimic

endorphins make one sleepy afterwards, and likely the

early stages of normal endorphin production at night

nudge us off to beddybye land.

red pill(who fell asleep without his LDN last night)

red pill

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[Guest guest]

Yes, I encourage you to take LDN. I was diagnosed with Polymyositis nearly 2 years ago, although my case was quite low grade and the muscle biopsy was not strongly positive (the diagnosis was made partly on the basis of my symptoms of leg muscle weakness, but this could also possibly have been at least partly explained by my co-existing spinal stenosis). Nonetheless I was diagnosed as having Polymyositis by a neurologist who specialized in neuromuscular diseases.

I never took steroids and strongly wanted to avoid them, which is why I decided to try LDN, and while LDN hasn't been a magic cure all, it has certainly greatly improved things (I am now able to walk up to a mile, sitting down only once or twice to rest, etc.) Moreover for the first few months on LDN I tested my CPK every month, using an online testing service, and already at the end of the first month, it dropped a little, and it continued to gradually drop, and I take that as concrete proof that the LDN was doing some good.

There was one other person on the LDN website who also had PM and felt the LDN was helping, but unfortunately I have lost touch with her. (Hers was a longstanding case and she had been on steroids for years, so it may have been more complicated to figure out what was doing what.)

You will be very lucky if you find any rheumatologist or neurologist to prescribe LDN, and if your practitioner wont prescribe it, you may need to go to someone strictly into alternative medicine, which could prove costly since they will require a lot of other testing/treatments. But the ldn website can put you in touch with MDs who will prescribe it for you over the phone.

If you talk to your doctors, be sure to tell them LDN is NOT a narcotic, because most doctors seem to believe it is--but it is NOT.

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