the next step

I just thought I would mention that my doctor and I have discussed adding Rifampicin and INHi to my list of meds. I'm waiting to hear back on him as to what I need to do to get the prescriptions from him. So I'll soon be adding Rifampicin and INH to the list of meds I'm taking. On a tangent, I have an order of Culturelle on the way, along with another probiotic. Finally, pulse 15 is due to start on Saturday. I don't think I have enough time to get the other meds before then, so I'll likely start next week.

Comments

John this is one of my

John this is one of my frustrations also. My doc is a "see me once a month and get your scripts or forget it" kind of person too. I also am on the month to month plan! Her office is also chronically overworked and dropping the ball on scripts so I have gotten into the habit of filling my "pills of the week" containers and as soon as I am down to the point the following weeks fill won't be complete I reorder. Essentially I am a whole week plus away from being out when I reorder and that seems to keep me good. Early on I was out of one or the other antibioticsi several time before I got the clue to get that far ahead of it. The good part she monitors me closely with all that office face to face time. Good luck on the new plan and keep us posted. Yes we are indeed finding our individual ways one by one. marie On CAPi since Sept '05 for MS, RA, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxyi 200, Azith 3x week, Tinii cont. since April '07, all supplementsi. "Color out side the lines!"

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

Just an update - I know that

Just an update - I know that I mentioned I was starting pulse 15 this week.  Well, it didn't happen.  My doctor's office wasn't able to send my prescription renewal to my pharamacy before the office closed Friday.  I guess that means I'll have to get it this week and start the pulse next weekend.

It also means, I need to allow for more than 2 business days for my doctor's office to send a fax to my pharmacy.  What do you think, maybe renew a week ahead, a month, hmmm...maybe the prescription should be for more refills than just 1?  Hmmm....mysteries of the universe! 

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006

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 went for continuous

John, I went for continuous before adding any INHi or Rif. I will be watching your reactions closely as my plan was to add one of them as soon as I felt completely comfortable on continuous tinii. marie On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxyi 200, Azith 3x week, Tini cont. since April '07, all supplementsi. "Color out side the lines!"

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

Yep, I gave the

Yep, I gave the continuous therapy thought and decided that I could do that later if I have no reaction, no improvement from this change.  Also gave thought to merely lengthening the pulse to 10 days versus 5.  Anything is possible, we're all trying to find our ways through this and this is the next step for me.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006

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, Jim has good advice,

John, Jim has good advice, unless, of course, you are on vacation. I seem to remember that you work and are/were concerned about being competent. As unual, I only speak from my own experience. Rifampin hit me very hard within a matter of hours and curtailed my normal activities for months. Please read the literature that accompanies it. HOWEVER, I was not doing any charcoal or NACi and I was on Avonex (which probably had not much impact except on my liver, whose functions went WAY up twice ) So if you could try Rifampin beginning on Friday night, at least that would give you a cushion to see what it is going to do. This is not a toy and the very last thing we need is resistant CPni but I wouldn't think a couple of days will do that.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 44 pulses NC USA

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            

Thanks for the warning.  It's hard to say how I will react to either of these two additional meds.  I've most had little of any reaction to Flagyl and the bacteriostatics.  I do feel kinda woozy/light headed after taking them, but no real distinct reaction the vast majority of time.  I've been lucky in that.

My one distinct, substantial, holy cow reaction came with my very first ever empirical trial of NACi.  In my infinite wisdom, I started on 1200 mg/day of NAC.  Day 1, nothing.  Day 2, a little wierdness when I first got up that morning but mostly nothing.  Day 3, I couldn't stand or walk without holding onto the walls.  Major reaction.  Dizziness, vision affected, loss of appetite, very tired.  I must have slept like 15 hours that first day, didn't eat a thing.  The following four days I gradually recovered and stayed off of NAC entirely. 

So yeah, Jim's advice to start them separate from the pulse (particularly Rifampicin as INHi should be pulsed with Flagyl but I'm going to wait a month) is good advice which I fully intend to follow.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazolei) since 04/12/2006

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 encourage you to

 John- I'd encourage you to do your pulse with current meds, and not add the new ones in first. Both these are potent anti-chlamydials and will make reactions to pulse stronger, let alone die off reactions from their own added kill effect.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 300mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tinii daily (Taking a break from continuous protocol)

 

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

Thanks Jim, that's a good

Thanks Jim, that's a good suggestion.  I probably won't have the prescriptions in time to integrate Rifampicin or INHi into what I'm taking pre pulse, so I think waiting is completely doable.

I also want to see whether or not the rection of day 1 of my last pulse happens again or whether or not it was a fluke that day due to other things that were going on.  If I add in another abxi, I may not be able to tell.  It's good to integrate them in a timeframe that allows one to distinguish what's going on. 

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006

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