Re: Dosage - handful on 6mg

[Guest guest]

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,

Friday

ps, 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.

>

>