Chronicles of a Rifampinaut: the war continues at Pulse 26

On the eve of pulse 26, I can't help but reflect on some things that people here as well as in my day-to-day life have suggested to me.  The suggestions have been good, considerate ones, and I recognize that; however, I have decided not to take the suggestions, at least not yet.

What suggestions am I referring to?  I'm referring to the suggestion that I get a cane or a walker.  I refuse, outright, until I have no other choice.  And despite the hell I put myself through, I have a choice, and I choose to fight.

This is a war and a battle I fight daily and I won't give in.  I won't lose this battle if I can help it.  Walking unaided is something I need to do, something I very much want to do, something I will fight to do for as long as I can.  I will continue to fight to do it, every day.  I have the scars to show that this has been a long battle but I'm not about to stop or give in.

So, I look ahead to pulse 26 which I'll be starting on Saturday morning.  I'll enter into it like the allies landed on the beach at Normandy.  We lost a lot but won the battle.  I intend to win this battle, come what hell may come.

Comments

John, The wheelchair will

John, The wheelchair will help and you won't have it long but it will make your life easier. None of us know how long we will be sick. I spend more time than I should in mine but I also try to do without it when I feel good and I am almost as stubborn as you. I always said I would NEVER be in one. One of my friends met a girl this weekend that was sick for 9 years - then on CAPi for 7 years and now she water skis. I look forward to water skiing one day again. I will be 50 in 7 years. I also have walker with seat that Louise talks about and I like that as well. I look forward to donating all my "stuff" one day. I also continue to work out when I can. I find Aug. the hardest month because of the heat. I split my head open wall walking and we decided had to get that walker. I doo not want you to break something as it would make your life that much harder. Take Care

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

John, I see this situation

John, I see this situation for you as temporary too!   

 How is your upper body strength?

 Holding on with two hands and strong arms can really support you securely.

I would suggest looking for a used folding walker, some have wheels on the front feet, some of the folding walkers have flip down seats too.   These can be creatively used for some activities.  And perhaps another chair will show up to keep in the car and go to work, one for the house one for travel.    I have seen these items in Goodwill Thrift Shops and at the free store at our dump ( I live in the country and we carry our own trash!)  Also call around to church based thrift stores and I know at my church we have a good number of crutches in the storeroom.  So this may be more common than not.

Equip your home and your car, you can still be mobil and get to work.

Blessings,

Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

People can be so helpful!

People can be so helpful! Thinking of it as tanks and artillery - the caissons go rolling along - may help in daily life. You may be out of it in the next few years, but if you-re not, you will have its' use in hand. Personally, I can't help but compare your rock-strewn journey-adventure to mine. I am now about a week post extended (for me) post-pulse and this morning my staggering is a little more reduced and my spirit a little freer. Sorry, but I am a natural, eternal optimist.

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

Hey Rica     I decided

Hey Rica    

I decided to play hookie today from work.  Ive just been having too many problems in the morning while on Flagyli.  I don't know if it will get better but until it does, I'm home bound.  I may go back on Thursday, time will tell.  I'm fairly sure I won't be going back tomorrow but I might surprise myself.  Despite having a wheelchair, it's not a solution to everything.  I still have to lug it around and partially assemble it when needed, fold it up and store it when not  needed.  Those definitely will take energy out of me at some really difficult times of day but once assembled, I can get into it and bypass the other difficulties.  There's never an easy answer, just an answer.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

This is probably a good

This is probably a good decision, John, especially if it is covered. You can still walk whenever you want and I doubt you will become lazy.  I just realized that this may be comparable to my going to a walker, and for the same reasons.  I was happy that it had a seat because I was so tired.

I will be joining you on Rifampin tomorrow, or, if you are stopping, I wil be on it anyway. The only question my doctor asked me about it was "Is it time?" Do I think so, given what has happened so far. I answered that I thought it is.

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

Rica           

Rica           

A close friend of mine (my girlfriend) found a wheelchair that a friend of hers has had stashed in his basement.  She called him and he gave it to me gratis.  Pretty surprised but it wasn't doing anything so he was willing to give it up.  We brought it home last night and so now I'm equiped with one.  It's kind of trouble to move around and set up but once it is, it's definitely going to be helpful when I need it.  Still not wanting to use it, still really resistant to the idea, but it's there when I need it.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John- I think with the

John- I think with the higher dose flagyli and the rifampin at the same time, you may be giving yourself a bit too much to handle. You want to kill this thing, but not at the expense of tissue necrosisi from too much inflammationi. Do you have the option for low-dose prednisone to see if it cuts into some of this worsening of locomotion? You might be able to hit this as hard as you are doing if you have some back up on the anti-inflammatory end. Daisy found this to be a godsend with her husband. Worth considering.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim            

Jim             

My doctor and I talked about using low dose prednisone a few weeks back, perhaps more then a month now.  Neither one of us was keen on the idea.  However, given what's going on today, I don't know whether it's a good or a bad idea.  I frankly don't know what to think about it.  I'm in the process of getting a wheelchair, unfortunately, but that's the reality of my situation.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Rica           

Rica           

A cane isn't enough.  I fall while holding onto railing and walls.  A cane would only prove to be more difficult then the former methods of trying to avoid falling given that it isn't a fixed object and moves.  I know this without a doubt, it's clear that it will not be stable enough.

I made progress (if that's what you call it) this morning about a wheelchair.  I reached one place and sent an email to the other.  The first place told me $200 to buy, $40 to rent for 2 or 3 days.  The other place had them on their website, apparently new for $200.

Given that I'm using medical reimbursement at work of up to $1000, I can afford to do it, provided I reimburse myself.  Of course, standing at the copy machine and making copies so that I can submit them for reimbursement isn't something I look forward to doing.

So, we'll see what happens.  I would so much rather that I wasn't going through this but given what I'm trying to accomplish, I'm doing the best I can do.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John, I just this minute

John, I just this minute saw your post about reconsidering a cane - AFTER i wrote. You could TRY a cane - wald with it for five minutes. If that doesn't give you enough security, then you could move to more serious support. But, given your fighting spirit, you may find that , used correctly, a cane gives you great security while keeping you

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

If I had known what was

If I had known what was coming, would I do it again? Yes, but I would change the dosage of my first pulse and I would stay on Rifampin. IF YOU decide to use a cane (here we go again), remember it is only a temporary crutch, and eventually you probably will give it away, unless you like the freedom it gives you. BUT! I suspect your leaden legs will not get any lighter and may even get heavier during flagyli and stay that way for days or weeks after, finally lightening maybe to a higher level . This has been an inexorable part of my pattern, at least (One can hope, anyway!) A cane would be a defensive measure, brought on not by the disability caused by your disease, but by the casualties of the battle. I think more in terms of the ambulance to help the casualties. We would very much like for you to survive and not be collateral damage!

By now, you are probably not feeling much, having descended into the flagyl-land swamp. We will be here to welcome your gradual return.

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

You might consider

You might consider lengthening the recovery time that you allow yourself between pulses. Yes, it'll slow the protocol; but if you fall and really hurt yourself, that'll set you back even more.

Norman       I agree

Norman      

I agree with what you're saying but more risky then being injured from a fall is some of the other crazy things I do, such as cross a busy street on foot, albeit when traffic clears.  I know I can't do that today, given that I can't wall a 100 ft. without either sitting or falling down.  Just not going to happen.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Rica          

Rica          

Talk about glutton for punishment.  If you went through this, I applaud you for taking the dive again, willingly.  This is not something I would will on anyone.

This morning, after struggling to get to work, I got there.  Needless to say, I was extremely unbalanced and walking very hard all the way in from my car.  Then, a good 1.5 hours later, I made the decision to use the bathroom facilities, which aren't close to where I sit in the office, they're a good walk, perhaps 5 minutes at my speed, 30 seconds at normal speed.

I made it there albeit it was very precarious.  I did my business and then began the trip back.  That was much more difficult then the trip down for reasons I don't know nor understand.

Needless to say, I got 90 percent of the way and then crashed head first into the wall and the floor.  Someone saw me do it and offered to get my office chair which has wheels. 

I accepted the offer, struggled to my feet, and then dropped into the chair.  He then wheeled me over to my cube entrance where I told him I would handle it from there.  He left, then I spent about 3 minutes pulling myself into the cube and situating my chair in the right spot to type and work.

I've been thinking and wanting to find a new employer.  I even had an interview scheduled for today, this afternoon at 3:30;  however, I decided it was best if I canceled it and did.  I can't see myself making it out to my car and getting to the interview in the time alotted, the time I gave myself.  It's just too much to ask of myself to be able to walk in to a new, unknown place, and handle things normally enough to get a job offer.  Just too much to do.

So, I'm resigned to dealing with life today as it is and trying to work from home for the remainder of the pulse.  I know I can get around my house due to the close proximity of things I can sit in and grasp onto while moving around.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

My progress was very fast

My progress was very fast and steady - relentless - while I was on Rifampin. It was very hard every day, after the first 4 months. At that time I was on Rif and Doxyi and just continued my slide into oblivion. Then I added flagyli and spent the next year being slammed around by the "fast protocol". BUT... I came out of the experience greatly improved. My speed of recovery is why I would stay on in and indeed, may soon go back on it. I see my doctor today and will discuss it. I hope he will do it.

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 wonder if the flagyli I

I wonder if the flagyli I was taking earlier was real flagyl?  This is a higher dosage and one hell of a lot harder then at the previous level.  It makes me think that what I was given before wasn't very potent, wasn't the real thing. 

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Jim            

Jim               

I don't dispute the likelihood that Rifampin combined with everything else I'm on is nailing Cpni where it hurts.  It's really why I decided to try it as I want to get the process going and get some kind of benefit I can see in my life from it.  So far, that's not the case but I'm holding on, hanging in there for the 3 - 5 years that Dr. Stratton has said this process takes.  It's not easy at all.

This morning, I was really having trouble.  I only managed to make it to my car because someone saw me fall down and came over to help.  I almost sent him away but given the situation, I went ahead and let him give me a hand.  Flagyli is really taking a toll on me at this dosage.  I hope that it pays off soon.

I've been giving thought to using some of my days off at work.  I have something like 4 weeks of sick time.  I could use 2 days of it each week that I'm on a pulse.  Alternatively, it's possible that my boss will give me approval to work from home for a few days each month.  I haven't yet asked so time will tell.

Back to the concept of using a cane or walker.  Damned if I want to do that.  But how can I not given the idea reall consideration?  I don't think a cane or walker is enough though, I think either would make me more likely to fall.  So I'm thinking wheelchair?  Just to get to the car from my house in the morning, especially on pulses.  God this sucks to have to consider.  I was doing 5 miles a week on my feet just  a year ago.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John- I'd note that

John- I'd note that Rifampin is the drug of choice for both Dr.'s Stratton and Siram in treating MSi. If you think about it, you are covering a wider range of the organismic phases with NACi, Rifampin, doxyi/azith and metronidazolei: kind of nailing it every place you can. I'd like to hear more on why you are thinking it's time to stop it. You mentioned some effects you attribute to it.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

John, I ,too, hope the

John, I ,too, hope the improvements come. You have certainly earned them. I took Rifampin for 16 months, along with Doxyi and Azith. I then stopped the Rifampin, which, in retrospect, I would not do now. You have now had some definite reaction and are hitting something that is fighting back. I was not on the Vit D at 4000 units then. I think that the saying is very true - "as fast as you can" for MSers before it gets too late. All this is, of course, my own speculation.

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

Rica           

Rica           

Just so I understand, you wouldn't stop the Rifampin after 16 months?  If so, what would prompt you to make that decision?  Am I mistaken about Rif being active mainly against EBs in transition to RBs?  I know that it's supposed to have some activity against RBs but my understanding is that it isn't as significant.  Just wondering...

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Rica            

Rica                

I can  only hang in there, hoping that you're right about improvements.  There have been subtle improvements in the past but it has been a long time since I noticed any changes.  No idea when it might happen but I know that I have no other viable options but to keep going.

On another note, I have been giving some thought to stopping the Rifampin after having done it for a year.  I suspect it's caused some other effects that I haven't talked about here, things I would like to change, and given that Rifampin in more effective against EBs going to RB stage, I'm not sure I need it anymore.

On still another note, exercise has been something I try to do every two or three days.  I hop onto a Health Rider bike I have and do about 10 minutes on it if I can.  It's a big change over what I was doing last year and had been doing for several years before that, but it's all I can muster right now.  I've given a lot of thought to starting up at the gym again but I like having free time.  Going to the gym as much as I was doesn't leave much free time. 

It's a tough trade off as I was much more physically able then, much more mobile and able to do things.  I suspect that excercising heightened my metabolism so much that I was expelling drugs too fast, so fast they weren't as effective as they might have otherwise have been.  It's all speculation of course, but what else do I/we have?

 

 

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

<>John, Over and over and

<>John, Over and over and over I say, this bug does not go down easily, we don't have any other options, and it has been so worth it. As I read what you wrote, my "heart leapt"! Again - it seems finally you are getting a reaction that may bring you some improvement in a few weeks - a whisper of "I couldn't do that before".

<>It now takes me 50 days to recover from a pulse and reap the benefits of my latest pulse. My legs did EXACTLY what yours are doing. Sleep - that was the other big thing during and after a pulse for me - I wanted to sleep much more than usual. It was also nearly impossible to exercise much above my regular daily occupations, which were (and still are, though not nearly so much) harder than when not on flagyli. This is SO exciting!!!!

<>

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

This is my 26th pulse;

This is my 26th pulse; however, it's only the second with 1500 mg Flagyli.  I can say without a doubt, it makes a big difference.  Things are much harder on this dosage. 

I woke up with the heaviness in my legs and it has just gone down hill all day as I take more and more stuff.  My next dose of Flagyl is at 3:45.  I'm not looking forward to it but then, who would?  I've been home bound today as I just could not make it to my car.  Thank God for delivery!  I do that a lot, not having the general strength to go shopping for food, nor stand for long periods of time when I'm doing better.

Rica, how did you do it?  I find myself just dragging and dragging and dragging.  My load of Cpni must have been MUCH worse then I ever imagined.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

I've taken only one dose of

I've taken only one dose of Flagyli so far today and can say with no doubt that placing it into the gel capi really eased the process of taking it. I can pop it into my mouth and wash it away without any taste or impact. Much better! My thanks to those who suggested it, it is a good move.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

On another note, after my

On another note, after my last pulse I resolved to get gel caps to wrap the flagyli into on this pulse. I got them yesterday in the mail so tonight I'll be quickly filling gel caps.

In case you're wondering, I bought 200 of them, 000 size, along with a cap filler to help with filling them up.  All in all, under $30 spent.  I got them through a sub-retailer on Amazon.  They got it to me quick, I was surprised.  The retailer is named Joe Muscle.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

I also agree with you.

I also agree with you. Fight like a madman. No, fight even dirtier than that. Someone once told me this phrase They said, "use it or loose it". It makes some sense.

 

 

 

 

 

&nbs

LOL John; good for you!

LOL John;

good for you!

Blessings and good wishes marie

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

John- one thing for sure,

John- one thing for sure, we are all cussed stubborn here. All it takes is the suggestion of "giving in" for most of us to dig our heels in harder. Bravo! (Liability waiver: in the event that you fall and break something, no encouragement for cussed stubborness here may be construed as legally binding.Innocent)

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

I'm totally with you, John.

I'm totally with you, John. It was my abject fear of going that route that moved me to start this treatment the moment I learned of it. GO, JOHN!

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

John, you surely are

John, you surely are younger and less brittle than I who fractured a bone in my left foot two years ago last month.   Thanks for acknowledging that the suggestions were made with consideration.  I am not surprised that you have decided not to take them!  For me it was a long 6 weeks in a walking boot and a full 4 months before every step was comfortable again.

Wishing you stable steps hence forth,

Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Oh John, that made me

Oh John, that made me laugh!  If you don't mind the battle scars, fight on: you reminded me of the day, three years ago, when someone suggested I get a disabled scooter.  There was nothing more likely to make me determined not to need one ever...................Sarah

An Itinerary in Light and Shadow

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.