the next step

Submitted by farandwide on Thu, 2007-08-02 01:01
I just thought I would mention that my doctor and I have discussed adding Rifampicin and INH 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.

 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.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 300mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Taking a break from continuous protocol)

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Thanks Jim, that's a good suggestion.  I probably won't have the prescriptions in time to integrate Rifampicin or INH 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 abx, 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

RRMS/EDSS was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

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 NAC 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 CPn but I wouldn't think a couple of days will do that.

 

Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 44 pulses NC USA

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

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 NAC.  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 INH 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

RRMS/EDSS was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

John, I went for continuous before adding any INH 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 tini. marie On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini cont. since April '07, all supplements. "Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

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

RRMS/EDSS was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

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

RRMS/EDSS was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

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 antibiotics 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 CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini cont. since April '07, all supplements. "Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro