50 done,srill not beter

So done 50 now using rampherin..not noticed much differemde but will continue for the moment.  So hoping ro be better= this has become a long and difficult journey . The abitics definateliy helped which motivates me to continue with this nitemare.  I'm sure my father has cpni, wihich he goet from his mothers I've got ms and just wish the medical connunity  would take a bit ot notice of this.  Anyway too tirrd to wright more - Beat tp all, love Suzanne


Comments

Rifampin - Rifabutin

Twelve years and still going.   I have stopped Rifampin (half-life +/- 7 hours), and m now on Rifabutin (half life 47 hours), getting around the clock _____.  The dosage is, I think, supposed to be 2xd 150 mg, which I did at the beginning.  After a few days, my husband CARRIED me to the doctor, who told me to stop that for a month, which I did.  I now take it one time a day - in the middle of the night.  It works, and has changed my life.  I no longer have to wait two hours before eating and one hour after twice a day.  

As I have always said, Rifampin is not a toy.  We must respect it and using it properly takes a great deal of attention.    I may never be able to take the full dosage of Rifabutin (I am 104 pounds), but researched it and it is acceptable to do it this way.

Good luck, everyone.  Stay with it - it's  long and hard, but it works.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I've recently returned from a

I've recently returned from a short, but lovely, visit with Rica and her dear husband, I can attest to her post!!  Cool

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Just bumping this post - if

Just bumping this post - if the correct dose of Rifampicin should be 300mg x 2 a day, is there any chance we could amend this, please, on the Getting Started - Treatment Protocolsi - page? It still shows as 150mg x 2 a day there.  I'm easily confused! Thanks x

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

I tried to change it a couple

I tried to change it a couple of weeks ago and it looked like it 'took', but now I see it's reverted to the original.  Will try, try again...  Cool

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Thank you! x

Thank you! x

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

I've gone back in and tried

I've gone back in and tried again.  Almost made it 3000mg a day, which would have been entertaining, but terrifying... Cool

Would a couple of you please check it once or twice in the near future, to help ensure it doesn't revert again? 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Suzanne, what are you taking

Suzanne, what are you taking and what dosages and how often?  

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Big thanks to you and and SG for pointing this out to me

I got my quantities of Rampercin wrong, but have now corrected it.  The post about which protocol to choose is very unclear, I thought it said to use 150 mg R X 2 which is why I was taking too little.

Anyway I hope I have got it right now and big thanks to SG and Rica for pointing this out to me,  I also have to increase amoxy -will do when I go back to Kiev where all abs can be bought otc.  

Thanks to all, I will keep you updated on how it goes.  Best wishes to all, love Suzanne



diagnosed RRMSi 2000 - had v little trouble til 2009 when changed to SPMSi - since then things got steadily worse.   Had ccsvi procedure 3 times, helped with general fatigue but did nothing for walking - started abxi 24.08.2

Suzanne, I have just looked and there is a mistake about

Suzanne, I have just looked and there is a mistake on the protocol section of this site, where it goes indeed say to take 150mg of rifampin twice a day.  It might well have said that since Jim put it up, but nobody noticed since not many people take it: I never look at that section because it is way in the past for me.  It is fine to start on that, and in fact I found a note on ThisisMS that Rica started on that dose, but it is best eventually to take 300mg twice a day.

According to Supaguy you seem to have been improving already, so it might well have been the best way to start, if accidentally!  Some eople are so knocked out by starting on the full dose that they just abandon it............................Sarah xx

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Rica!In answer to your

Hi Rica!

In answer to your questions about Froggy's dosages and what she's taking. I believe I have a fair idea.

She  has been taking the standard Wheldon regime for about 3 yearsyears or so. i.e. 200 milligrams of doxycycline; 250 milligrams of azithromycin 3 times a week. 2400 mg NACi. Pulsing regularly with Metronidazolei for about 2 years and then changing to tinidazole just over a year ago. She added 2 x 150 milligrams of rifampicin back in the summer. Soon after the s she added 2 x 500 milligrams of amoxicillini. I realise that her dosage of rifampicin is half that of what you take. One thing that I do also note is that rifamacin that she takes does not cause her tears or her sweat to become redened (not that I have seen her crying or have been close enough to see her sweat).

The obvious question here is does she need to double the dose of rifampicin.

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

That's a low dose of

That's a low dose of amoxicillini, Supa. Standard dose tends to be 500mg x 3 to maintain levels. I took twice that dose.

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

According to the British

According to the British National Formulary the correct adult dose of rifampixin is 600mg split in two doses which is what I took as  well as Rica. I never cried red tears though!........Sarah 

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Congratulations on your turn of fortunes, Froggy.

Congratulations on completing pulse 50, Froggy.

Congratulations on completing your journey back to the UK last Saturday in one piece … even if a little battered.

Now I will address the issue of accuracy or even honesty.  Sometimes people on these pages or even face to face make various assertions, some more credible than others.  It has been known on many occasions for me to be asked where I have been or what I have been up to.  I have frequently claimed to have just gotten back in after having been out, walking The Coastal Path.  The reality is that my head has barely gotten off of the pillow and my feet have yet to touch the floor.  It really is not so unusual for people tot to take what I say too seriously.  You are one of those people that don’t even bother to roll your eyes when I say it.  OK … so I tell the odd porkie-pie: the odd lie.  I do it as a joke … but there are perhaps others here that say things that are not really true at all … but they still post it anyway.

I have been speaking to you and seeing you on Skype for just over a year or so.  Then, I demonstrated my walking to you.  You saw me walk across the living room (without sticks then I think).  I watched you attempt to stand up.  I’ll have to be careful of editorial rebuke here but as I saw you lean forward and rise, I thought “Oh f***!”  The tremor was immediately apparent.  I thought that you were doing the Ukrainian version of the Hippy-hippy Shakes!  In all our many conversations, I tried to keep things buoyant and hopeful.  As time ticked on and you felt lower and lower, your appetite ebbed even further away from any normality.  I began to sound more and more like your mother, nagging you that you really must eat.  For your part, you seem to be aiming for someone that had successfully ended it all by means of starvation.  All the bones and tendons in your hands could clearly be seen.  There was no question; you were on your way down and probably on your way out.

Back last year, you had at least started to get control of the neuropathic pain that had taken up residence.  The increased dosages of gabapentin had brought you quite some relief …. but that seemed to be short-lived and the pain would return with a vengeance.

Towards the end of last winter, I sent you some benfotiamine capsules in the hope of easing the neuropathic pain.  I also sent you some home-made high-dose biotin capsules to increase the dose of that vitamin that you were already doing.  I could not know whether the biotin would have any affect at all … but we could hope.

It could have been nothing whatsoever to do with the biotin at all.  It could have been purely down to my good wishes.  Whatever it was down to, you regained your bladder control.  Not a big deal until you haven’t got it.  You Tremor had gradually reduced over that same period too.  Your ability to do The Hippy-Hippy Shakes is greatly diminished.  If there is a puddle on the floor and you blame the dog … it is because it was the dog’s doing.

When I first used to speak on Skype, I found it quite frustrating – even irritating – at there would be this woman sipping a voddie & Coke and talking away with a more or less constant slur.  It seemed like I was in conversation with a drunk … but of course I was not: I was speaking with a struggling but very determined MSer.  Today, that slur has all but gone.  That’s not just me saying that: both your brother and your mother have noted that fact.

Back in the summer, you started taking rifampicin and a few weeks after that, you started taking amoxicillini.  Soon after you started the rifampicin your appetite returned and you started eating normally.   Thank God for that, at least I don’t have to sound off like your mother.

Bowel function is improved though, as with many of us, it still isn’t perfect.

Last year, if I had have said to you “Hey Froggy, you really need to get out of that flat of yours.  Don’t rely on others; take yourself out in the town on your scooter”.   If I had have said that, you would have assumed that I was taking the piss.  You couldn’t even remember your three digit door entry code to get back in.  Then, for you to be out, you had to rely on someone else pushing you in the wheelchair.  Over the last few months, you have regularly taken yourself out from your 1st floor flat and scooted off up the road, shopping and getting yourself back OK.  Many days that has been 3 times in one day.  You have frequently chosen to walk up the stairs to your flat (just because you can).

Earlier, you opened up a box containing even higher dose biotin that I had made along with a brand new smart phone.  Your old phone is a very basic phone with buttons on it.  Tonight, you very easily got the hang of things and did very well indeed.  You managed to open up the dialogue box and enter your mum’s wi-fi passcode and succeed on the 2nd attempt.  This time last year, you would have thrown it at the wall, smashing it into a thousand pieces.  Tonight, you were pretty sharp, learning new skills in double-quick time.

Oh, I don’t wanna tempt fate but it seems like the high-dose benfotiamine is doing what I wanted it to do; hopefully the pain is no more and I have seen that you stand up much better and straighter.  I know that you ain’t out of the woods yet but you are certainly going in the right direction and doing really well. 

Now readers on this site can choose what they believe and who they believe.  It is my assertion that you are now doing really well.  Whilst Froggy has not get done as well as Moggy, I am just delighted that you are both getting well..

For my part, my aim is not to catch up with either of you; no: I intend to completely overtake Lucky Irene and waive to her in my rear view mirror.

 Smile

 G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Huge thanks to super guy for this post and all the encourage men

that was a super post super guy very appreciated by many so big thanks for all,  

diagnosed RRMSi 2000 - had v little trouble til 2009 when changed to SPMSi - since then things got steadily worse.   Had ccsvi procedure 3 times, helped with general fatigue but did nothing for walking - started abxi 24.08.2

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

One of the best and kindest

One of the best and kindest posts I have read in a long time 

well done supaguy

regards

D

The Greatest Risk of all is Not taking the Risk...

No wonder we love you here,

No wonder we love you here, Supa. Brilliant post! x

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Well said Boadicea...Supa

Well said Boadicea...

Supa -sorry to hear you have not been great... Nice of you to make Biotin caps... 

I hope you and Froggy feel a lot better soon...

Started NACi Sept'14... 100mg Doxyi Dec'14...  Roxi 13Dec '14 Supplementsi...

Good Luck

Best of luck to u froggy.  Pulsing also - feel like crap.


Never stop hoping, Suzanne. 

Never stop hoping, Suzanne.  Your time will come! x

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Suzanne, if Supaguy is to be

Suzanne, if Supaguy is to be believed and I have every reason to believe him, then your time is certainly coming now! I know that you both have been speaking a lot on Skype and he has seen all the improvements over the last year.

The control of your bladder since starting biotin for starters.  You mentioned this yourdelf a while back.  It has also enabled me to not need to rush to the loo so often and it has even benifitted my mother, though she is taking less. The lessening of your tremor is maybe even more relevant.  Later on you started rifampicin: it is probably still early days to comment on it but one thing I have noticed since you started on it, is your tendency to miss spell when you are typing, whether using a screen or keyboard: rifampicin does things like that for a while: it made me veer drastically to the left when walking!  I was glad to give it up when I changed to interrmittent protocol but I can't say it did nothing for me, after all, it has now been so many years since I took any antibiotic, but there has been no hint of deterioration.........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Supaguy, thankyou so much for

Supaguy, thankyou so much for this post!  Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Love your work Supaguy!!!You

Love your work Supaguy!!!

You are doing a great job of supporting the people around you :-) keep it up!!!

Sometimes when you are in the woods you need some perspective fro someone else -at least i do!