Re: Re: Dosage - handful on 6mg

[Guest guest]

Hi Friday,

I need to put my two cents worth in. I tried Bacloflen and had a lot of problems with weakness and fatigue. Actually I tried it a few times after changing doctors. They all thought that it would work for me. I also tried Norflex and Zanaflex. They worked in reverse of what they were suppose to do. Instead of loosening me up they stiffened me up to the point that I was walking like a scissor.

Many years ago my doctor put me on Tegretol for the muscle spasms. I was taking 100mg of tegretol three to four times per day. I started in 1987 and got relief thank God. Although if I was going through stress like when my Mother died, then I would still get a few spasms slipping through. I got on LDN a year ago June and my spasms have eased up quite a bit. I was able to cut my tegretol down to 1 & 2 pills per day. Tegretol is a medication that is also used for seizures. I never had seizures but for me it worked for spasms. When you are on tegretol you need to have your blood checked twice a year. Like I said I have been on it 17 years and have had no problems at all.

I also think that taking magnesium supplement does help with spasms. I take five, 250 mg tablets per day. It also helps with bowel issues.

I hope that this helps. Good Luck and stay well.

Marie

----- Original Message -----

From: Friday

low dose naltrexone

Sent: Friday, August 06, 2004 9:50 AM

Subject: [low dose naltrexone] Re: Dosage - handful on 6mg

Well, that handful on 6mg just got smaller. I dont see the point of being on 6mg and it only makes my script finish faster...I've looked over my diary and its much of a muchness really - so, 4.5 IT IS!!Im sticking with 4.5mg - and my MS neurologist just wrote me a repeat script for it yesterday and was impressed with my diary over the last 3 months and asked if she could take a copy for my files. She cant find any fault or adversity in this low dose drug - it doesnt bother her at all to prescribe it. (her words)She (my neuro) can see the science of LDN and understand it's benefits, and even how its helping hormones and increasing chances of pregnancy. She'd love to do more about a clinical trial, but is way too busy with other projects - She is meeting with the Antegren 'people' today, explained it is promising, and as usual, at this stage, only for RRMS.I did, however, tell her that for me, LDN is not making a terrible difference to spasms and stiffness - but the thing I'm having problems with is Baclofen. It may take 20 percent of my spasms away, but at what price? It only weakens my legs and it is the highest fatigue causing drug out of all the anti-spasms she knows. She has quite a few MS patients complaining about it.She suggested stopping the Baclofen during the day - it only has a working life of about 6 hours per tablet in our bodies, and to start trialing how Valium half dose (only 2.5mg) once in the morning feels for me. Valium does not cause weakness in the legs and I may find this is far better - but again, to keep a diary and see if it causes me a degree of drowziness that would effect my day to day duties - driving, working etc. At night, I can opt to take one baclofen before bed only.Also, for Aegis/LDNers, my neuro is good friends/colleagues with Prineas - who incidentally is not involved in research as much as he is an investigator who sits in his lab and looks at MS brain biopsies, studies MRI's and formulates 'theories', such as the Apoptosis one. He is a semi-retired elderly professor who is not involved in any clinical trials - .I was also explained about the amount of patients who do take Rebif, and other inteferons and have done extremely well. I argued the whole 'immuno-supressant' nature of them with her, and she told me that the ABCR's are not as simple as that. They are not just suppressing things, as much as they are 'adjusting' - some things are suppressed, some are enhanced and they have a far more complex function than to simply be labelled 'suppressants'.She is happy about my news on LDN, she has no problems prescribing it, and is already to a few others. Also, not a terrible believer in the power of the statins. Too early, too little to fuss about.when she looked at my list of questions about various drugs and their suitability to my situation - she told me to put less focus on the 'drugs' and more on a healthier lifestyle, less stress, monitoring and diary keeping and finding what is write for me, together with her monitoring and input. As I am PPMS, there is little or nothing for me to take that is terribly safe and non-toxic or even effective and this is why I must just focus on LDN, health and happiness.Overall, it was an informative visit, and I really only need to visit my neuro once a year or every two years - unless there is an issue or something new worth trying for PPMSers.Take care,Fridayps, hello to all whom i email off this list, I promise to answer your mails soon - its very late now, im off to bed (soon as I check the footy results).> > , someone recommended taking the maximum dose, but I don't think> that's a good idea. Dr. Bihari has most of his patients on 4.5 mg and> about a quarter on 3 mg. Only a handful of people are taking 6. > >