To Birdie about LDN

[Super_sally888]

Hi,

I would be very interested to hear what your husband has found out about LDN, particularly as he is a pharmacist and could properly evaluate information he finds? (Low dose naltrexone).  

I just did a little reading, it does look like a 'wonder' drug, which works by stimulating the immune system.  Applicable to a range of autoimmune conditions...

Sally

[Super_sally888]

That is so cool that your husband can do all this research.  I am sure a lot of us here would be interested if he has time to summarise etc.

I studied physiology and pharmacology at university (though i don't use it now) and it is such an interesting field.

Hope your life is a little less hectic now.

Best wishes

Sally

[Birdie75]

Hi Sally.  I haven't been around the board over the last week or so because life's been a little hectic.  I couldn't do the research justice that my husband has done on this topic.  It's pretty interesting, actually.  He has a whole slew of meds/antioxidants/etc. that he thinks would be beneficial.  He has all sorts of theories about addressing the problems of MS on multiple levels (not just at a single source) and believes that beta interferons have a place, but aren't the only solution.  He also thinks that the side effects are so severe and their effectiveness is a little overstated which concerns him.  He actually doesn't think that LDN and beta interferons cannot be used together like many postulate - he thinks they address different areas and could/should be used together.

I keep hearing him say all sorts of stuff about the blood-brain barrier, microglial activation, oxidative stress, various terms I had NO clue about a month ago and have only a slight clue about now.  He actually told me this morning he was emailing a doc at a major research hospital - who also happens to be a pharmacist - regarding LDN because this doctor is apparantly an advocate of the treatment.  He also wants to compile his research in some sort of concise paper to see if it might do some good.  Once he does so, I'll be sure to let you know if you're interested.

It's funny, he's a retail pharmacist and was never so involved in the clinical/research side of things because he never needed to be.  Now that it's impacting a member of his family, all that info has been re-awakened in him and his knowledge is pretty remarkable, IMO.  He thinks that an MS specialist will be better than the neuro we have because when he talks to our neuro he seems like he only knows about the standard interferon treatments and nothing more.  He believes an expert in this disease should have at least heard of these other things.  He also thinks there are things a pharmacist knows that docs don't because docs deal with everything and aren't necessarily pharmacology experts.  

I, personally, feel really lucky that I have someone with his basis of medical knowledge on my side.  I'll help you out in any way that I can and will give you a better update on the info he has, once I can get something together for you.

Birdie

[monotreme]

Check Birdie's comments about her husband's opinion on LDN under her post "So I went to the neuro"

Elaine

[essdipity]

I bumped up Quix's recent comments on LDN. Hope it's still near the top.

ess

[Momzilla]

Hey, Hot Legs~

It sounds a bit like you blame yourself in a way for the horrible experience you had, your stroke and all the complications.  I hope not.

Although I believe we have so many resources of information now available to us, like the internet, your doctor is the one who has a license to practice medicine.  It was HER responsibility to know the contraindications of any new drug she prescribed for a patient.  LDN is still an 'off-label use' for MS.  She should have been extremely cautious in prescribing it, and wasn't.  Her negligence nearly killed you.  

I just would hate for you to take any blame in what happened to you.  Blame and guilt should not enter into it for you.  Anger at your doctor, yes.  I could understand that.  I'm still angry at her!  She almost took you away from us.

While I think it's important for patients to have an active role in their own care, you don't have a medical degree.  No license.  That's why you go see a dcotor.

I appreciate you not writing LDN off for anyone else.  I think it sounds like a VERY interesting option for those who have run out of options.  It will be good to get more data on it as they continue to study its effects or effectiveness.

Take care of yourself and feel better!

Zilla*

[grannyhotwheels]

Hi Sally

LDN I think is a wonderful medication for some people but please make sure before starting it you read everything you can about it and also make sure you are seeing a doctor who knows what the heck they are talking about concerning LDN.

I had a very bad experience with it but it wasn't the LDN itself it was my crazy doctor not explaining how to take it.  You must be completely off of any pain medications before starting LDN.  I'm not exactly sure but I think it's 2 weeks or something like that.

I almost died by not being informed enough about it.  This was my fault along with my doctors.  That's why I strongly urge anyone trying anything new, please don't rely on your doctor for all of your information, research, research, and research some more.  Know everything there is to know about any medication you are going to start taking.

I'll be praying,
Carol