Whatever is Required

We spoke to Dr S just now.  He was approving of my going back on flagyli, and, because of nausea, cutting back on caffeine. 

A couple of interesting and heartening bits came of the conversation.  One is that I will continue with this protocol for another three months and call him again, sooner if there is news either way - worse or better - because I still react.  But... my daily reaction is nowhere near five years and four months ago.  For example, today is Azithromycin day - and Doxyi, Rifampin. Amoxycillin, flagyl, and caffeine. 

Here I sit, fairly sound of mind AND BODY, writing a blog and thinking fairly rationally.  Today, I went to the barn and did my everyday stuff, swept the floors, did some (much-needed) cleaning, some laundry, and some other stuff that I could not have come close to even thinking about months or years ago, especially on MWF.

The other thing is to me very exciting, both an encouragement and a warning:  caffeine, a short essay.

John (farandwide) and I speak on the phone occasionally.  He has, for a number of years, been unwittingly feeding his bugs and making them very happy with caffeine, and has gotten worse and worse.  At some point a few months ago Norman Yarvin pointed out this fact and John has cut way back.  May he now get better - but it will be on our clock, which runs very, very slowly. 

With this bit of knowledge in my mind, about ten days ago I stopped taking my AM supplementsi with my morning coffee (the same coffee I said I will NEVER give up).  I haven't given it up - just moved it to the time AFTER I take my AM abxi and caffeine pills (now 1 1/2 pills).

I told Dr S that I thought the use of my right leg, which was only a numb post five years ago, was improving faster than before and I really thought it was the more astute use of caffeine and could this be possible.  He replied with an emphatic yes.  I will continue to pursue this.  Anyway, I can sit in a chair and pick up my leg without touching it, and put it on my left thigh halfway up the thigh.  This was not possible even two months ago - I tried it.

So, for all the faint of heart, scared to death, of us - and all of our common and legitimate complaints - keep it up.  It is soooo worth it.

Rica

Comments

Thanks John I was scratching

Thanks John I was scratching my head wondering what Nancy was talking about.   Now I get it.   And yes she certainly does!  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
  • <

Nancy, we each have

Nancy, we each have different challenges, obviously.  As I go down this path, my reaction continues to lessen, but for several years, the response was so diffuse and my mind so foggy that I couldn't pinpoint any overall improvements, except the huge things like energy improvement and major muscle control.  I got physically worse for months and months, and then stayed in that hole for a long time, several years, I think.  My brain is better, there is no doubt, and I can better see small things measurable in inches. 

The muscles that are affected in your case are diferent, but may eventually begin to respond.  Why can't you walk?   For example, I no longer even have foot-drag, though I did even a couple of months ago.  I suppose if I went for a long hike, I would, but at the end of the day, even after working a normal day, when I do fifteen minutes on the elliptical, I don't.  Now I am beginning to test the height of leaning over a chair and comparing the height of rearward leg lifts - my height has been pretty small till recently - it's getting higher.

What abxi are you on?  Since last Jan (09), I have become a very big believer in MORE.    When I added Amoxycillin and began flagyli every day, I was flattened.  I am much, much better now.  I am not well, but considering none of this was ever supposed to get even a little better, I will pay close attention to what I am doing and keep doing it.

The big thing that I have realized lately is that the fatigue (exhaustion), is, I think, much deeper than any of us know.  I am no longer as totally worn out as I was.  This battle is quieter than we think.  We expect NOT to be so tired sooner, but mine lasted five years and is only now going.  I also think, for what it's worth, Vit B-12 is going a long way toward repairing tissues.  30,000 sub-lingual a day.

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

Hi Rica, love your optimism!

Hi Rica, love your optimism!  I'm a little confused on the coffee thing.... In the AM, I take my abxi followed by 1 cup of coffee, breakfast 1 hr later and supps in another hour.  Is this OK?

Mary Ann

SPMSi. Dxi 1991. EDSSi 6.0, 6.5, 6.9; Weldon CAPi. started 3/08.  All supps, NACi, Doxyi, Azrith, 13 flagy pulses, 5th tini pulse 11/13/09, 19 total pulses, no improvements, worsening condition 

Macorn        The

Macorn       

The theory involving caffeine is that it stimulates CB (cryptic body) stage Cpni to wake up and begin to reproduce.  Whether or not this is a direct effect of caffeine on Cpn or the result of energy levels in the human body increasing, resulting the same way in both cases, is anybody's guess.  What this means is that suddenly there are more EBs ejected into the bloodstream and possibly an increase in the load of infection should more get into new cells and form RBs.  They likely will but how much is anybody's guess.

Anyway , because your drinking coffee immediately following abxi, you're likely better protected from an increase in EBs.  However, bear in mind that it's not perfect, some might get through, which is where the anti RB abxi come into play. 

How effective the use of caffeine is with abx hasn't been tested or trialed anywhere that I know of.  I think that Rica and I are both trying to find out.  I am doing better having the caffeine only twice a day with abx and no other time.  I'm still not used to waking up and functioning fully without it but I'm making progress overall.

As far as the timing of breakfast an hour after abx and coffee is concerned, that should be fine.  I tend to wait a little longer then an hour but at least an hour is recommended.

 

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, a couple of years ago

Rica, a couple of years ago you wrote some words of encouragement to me. I printed them out and in my most despairing moments I read them. You continue to be my light.

There is one thing (at least) that I don't understand: if you have the energy to do a full day of physical labor, you can walk and even cllimb ladders, why do you have so much trouble lifting your right leg? If I lean back I can cross my right leg over my left at the knee without assistance, but I sure can't walk.

Jealous of John,

Nancy

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Nancy            

Nancy            

Jealous of me?!?!???  Huh?  <looks behind himself and checks under the table>  What in the world??  Rica is a nice woman but I'm hardly unique in my occasion to talk with Rica.  She has many friends and talks to many people  :-)  All it takes is a little patience and the desire to become friends.  Stick with 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

Rica, wonderful to read your

Rica, wonderful to read your blog update and continue to marvel at your progress.  Thanks for sharing your news!   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
  • <