The outcome of a month of tests was pretty much anticipated, so my wife and I were already deeply involved in researching conventional and alternative - or complimentary - therapies.
However, whenever we mention things like Essiac tea, Laetrile (B17), or Low-Dose Naltrexone to doctors, we are frequently met with blank stares. And while the doctor on my case was happy to dole out a morphine based painkiller with well known side effects - including the high potential for addiction with some grim withdrawal issues - he was appalled when I asked about medicinal marijuana.
What has been your experience?
On marijuana, so far as I am aware, it is not yet "legal" in the UK although a blind eye may be turned. Maybe it is the same here?
Do keep us posted on this, it may benefit others.
A quick google search will reveal a mountain of information on the therapies I have mentioned - some of it anecdotal, some of it based on science.
I personally became aware of Low Dose Naltrexone when a friend of mine was dx’d with advanced glioblastoma. He was essentially written off. The public hospital actually wouldn’t allow him to self medicate the LDN. His tumors were growing at a phenomenal rate. We convinced him to go private, the chemo protocol was changed, and he started LDN. A scan after 30 days revealed no growth.
He is still with us, and according to friends who have been in contact with him, is showing signs of general improvement.
Obviously when an individual is receiving various treatments simultaneously, it would be dangerously misleading to suggest that the “fringe” treatment had tipped the balance. But it has been clearly demonstrated that apart from slightly reducing the efficacy of opioid-based painkillers, LDN does no harm.
Only one of the doctors we have been dealing with had ever heard of LDN - and he dismissed it out of hand - actually refused to discuss it. But then he also said that detoxing, cutting down on meat, and eating more fruit and vegetables would have little or no impact. So let’s say I took his opinion with a pinch of bicarbonate of soda and tumeric! (two other “alternative” supplements!
It was actually quite amusing to see my GP’s face when I asked about the medicinal marijuana - he looked like I had just suggested we clear off his desk and snort a couple of lines of coke.
Yes, I have had a google on LDN now although, when I looked, I realised that I had heard of it in the context of MS and a big lobby which has been building for it in UK on behalf of those patients.
It would appear that it is only on the "prescribed list" in both UK and France for drug addiction. As in UK, it is probably available here too but it is non-remboursable. According to the MS UK Forum, some GPS do prescribe it but most don't and it has to be bought privately. I must say that I haven't found any clinical trials which have any substance (in a medical sense) although they seem to be starting them now for other auto immune diseases like Crohns.
I guess doctors have to be wary because without comprehensive clinical trials they have no knowledge of long term side effects. Havng said that, I assume that there were proper trials before it became available for drug addiction treatment.
When facing a terminal illness or one such as MS which is a slow progression in the wrong direction, this approach, of course, is not helpful!
We have a glorious day here in the sunny south of France, I hope it is the same with you.