Chronicles of a Rifampinaut: The Sixth Sense

Submitted by farandwide on Tue, 2008-04-15 14:50

I'm into my fourth day of a 5 day pulse. I forget what count this is, maybe the 22nd or 23rd? I know that April signified my official 2 year anniversary since starting the CAP with NAC and Doxy, way back when.  And here I still am, no better then when I began and sometimes worse.

Now, that being said, I haven't given up on anything.  I think that maybe I'm just starting to really figure things out about the CAP and how it can work for me.  What I mean by that is this...

Up until recently, I've been going through the motions, being very diligent to take NAC and abx on a set schedule.  I still am; however, now I think I've found something in myself that I wasn't aware of before, a reaction I wasn't noticing.

Recently, a discussion on the forum covered the topic of Pyruvate.  I began taking Pyruvate in the last month, along with INH.  I wasn't noticing any sort of reaction from it except I would get more energy out of it.  That was until I changed how I took the abx.

I also found out that Rifampin may be causing me to metabolize abx, removing them from my system more quickly.  I say may be because there was also discussion of how none of the abx I take are affected by the P450 enzyme.

In any case, out of fear, I changed how I take abx.  Instead of taking everything together, I now space them apart thusly:  I take Rifampin alone, apart from the others.  I still take Doxy, Azi, INH together.  Sometimes I may also take Flagyl, as I am right now.  But otherwise, Rifampin is spaced apart by hours, as much as possible.

I have noticed a reaction to  Rifampin, much more acute then I was getting before.  Much more.  I sometimes am almost to the point where I can't walk when I take it.  Walking definitely becomes much more difficult, as does balance.  I can do it mind you, but any sort of prolonged walking comes at great risk.  The longer, the greater the changes I'll take a plunge and end on my hands and knees.

Anyway, just thought I would put down some things.  I may add to this later.

all my best

John

RRMS/EDSS was 4.5, was 4.???, now 5 on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INH 300mg/daily on 03/17/2008.

Finally, finally a reaction!!! I have been dismayed so long and completely baffled at your lack of same. Now I will be holding my breath waiting. This makes me wonder what might have happened to me if I had taken my Rifampin alone twice a day instead of with Doxy.

 

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 50 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

Yep, it's definitely one of those.  It isn't _just_ Rifampin, per se.  I trip myself out by taking 3 grams of Pyruvate 30 - 60 minutes beforehand as well as 1 gram of Calcium Ascorbate and wham!  Of course, I can't be sure that the Pyruvate or Ascorbate is making any difference, I may have the same reaction without it, but that's what I'm doing.  I think taking everything at once was masking the response from the Rifampin, so it may or may not be that this is needless but it at least is identifiable.

Taking INH doesn't give me any sort of noticeable reaction.  However, I'm still doing it, for another 4 - 5 months, provided my liver holds out.

all my best

John

RRMS/EDSS was 4.5, was 4.???, now 5 on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INH 300mg/daily on 03/17/2008.

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

 Interesting observations, John, and I too am "glad" you are getting some clear reactions, especially related to your MS specifically. From discussions I've had I think both the pyruvate and the Vit C in the timing you are talking about can potentiate the bacterial kill. You may also be onto something here on the timing of the Rifampin. Thanks for your continuing reports of your self-experiment. It may help all of us sort some things out on this journey.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 250mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

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

 John - Interesting observations, thanks for reporting on your experience !

Makes me wonder what would happen for you if you bumped the Rifampin to 600mg once daily.  Not recommending it by any means, just pondering your response to the timing change and the supplements...

Daisy - Husband on CAP 5/07.   Roxy, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Mino

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

Good job John, you are getting reactions!

This hits home the importance of keeping on top of these things.

thanks for posting

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

I always look forward to hearing about your experiences with the protocol.   Has nothing really changed for the better since you started?

I know that you have never had very strong reactions to the ABX, but I do seem to remember you talking of night sweats and skin erruptions earlier in you treatment, and subtle improvements in some of your symptoms, notably balance and prostrate.   Here is a thread you started at Xmas 2006.... which kind of sums up your course through this protocol.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Michele       

As you know, I have had subtle improvements that have been continuing gradually, so gradually to be almost imperceptible.  The big changes I've been hoping for haven't happened.  Maybe this is the way it happens, slow and steady wins the race.

I remember the night sweats way back when but haven't had them in a long time, in over a year.  I didn't know what they were at the time really, since they seemed to be coinciding with my gym routine at the time and weren't consistently happening.  But I think that I concluded, as I still do, that it was a reaction to the CAP.  It was short lived though, I don't think I had that for more then a month, maybe two.

My balance is better....when I've excercised.  If I go without getting some excercise for a few days, walking is very unsteady.

I don't recall the skin eruptions you mention, unless you're referring to the nose bleeds I was getting.  I've concluded that it was happening because of the combination of lower blood pressure and the blood thinning nature of the abx.  I started taking vitamin K daily and it rarely ever happens now.

The burning sensation I used to get in my legs when I would take flagyl is gone.  I don't get that sensation any more.

I went back and read that old blog you linked to above.  My how time flies and how quickly I've forgotten some things.  My eye sight and sense of smell improvements are things I don't even realize have improved any longer.  Same with my sense of touch, which has improved though not back to pre-MS days.  Maybe things never will get back to that point but I was hoping it would come closer. 

all my best

John

RRMS/EDSS was 4.5, was 4.???, now 5 on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INH 300mg/daily on 03/17/2008.

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