Chronicles of a Rifampinaut: stayin' alive on pulse 25

Day 3 of pulse 25 is well underway.  Over the weekend, I had two days of taking the higher dose of Metronidazolei and it continues today with 3 x 500mg, this time in pill form as opposed to the capsule form.  I can now say from first hand experience, there is a major difference between taking the capsule form and taking the pill form.  The pill form is NASTY.  Horrid, horrid taste!

I've started attempting to toss the pill back in my mouth to my throat in hopes of missing my tongue entirely and washing the bugger down.  Uggh!!  I had it easy with the capsule form!  Unfortunately, when my doc increased my dosage, he also increased the amount of pill prescribed so that I get a 4  month supply at a time.  Now, all in pill form....yuck!

Needless to say, I'll be sure and ask for the capsule form when I next refill the prescription!

Now that I've whined about metronidazole and its horrid taste, I can also report a difference that I'm unsure whether is due to the higher dose or what exactly.  My visible symptoms have been sorely invisible up until recently.  With the higher dose, I noticed my urine is much darker then before, quite noticeably darker.  This should be a good thing and I hope that it is.

I am a bit more tired lately then I usually am.  I don't know if it's from lack of sleeping enough lately, or from the higher dose of Flagyl, or both.  Probably the latter.  I will endeavor to get more sleep as I really need it.

The heat lately has been troublesome.  Heat still affects me negatively.  I wonder whether that will ever change.  I hope so.  When I was a kid, I ran around all summer in heat, no problem.  I want to be able to again.  So, onward towards that.

Before this pulse, I had been thinking about pulsing INHi with Flagyl.  No thank you, this is enough.  I think until the Flagyl has little impact, I will keep things simple.

 

Comments

Daisy         

Daisy         

Thanks for the well wishes.  I have no idea whether INHi was responsible for what you propose but that would be nice.  My understanding is INH is a bacteriocidal not bacteriostatic, so I'm thinking it wouldn't generally be expected to do that, it would be expected to kill off Cpni.  It's more of an additional axe to swing at Cpn rather then the threat of one, from what I understand.  Maybe that's wrong and you or someone else will correct that understanding.

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 - Perhaps INHi

John - Perhaps INHi addition drove some recalcitrant CPNi into cryptic state and now the Flagyli is doing them in.  I hope so !

Also - hope you do see some real and measurable improvement soon !

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

Daisy on her own CAP 11/2012. 

John- I think you are quite

John- I think you are quite right, if flagyli wasn't killing anything you would not be having reactions.  It's very interesting and instructive to all of us that, after having very little reaction to the addition of rifampin and having had mild pulses even through the early part of your addition, the last couple pulses have packed some wallop. To me it says: give changes some time before making conclusions, as effects may be cumulative.

 

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

The last day of pulse 25. 

The last day of pulse 25.  Thank God!  There has been a marked difference with this pulse versus the 24 that came before it.

When taking Flagyli, I immediately feel my legs burning and/or heaviness.  I had some of that before but it's much more discernible now and lasts all day.  It doesn't go away.

Consequently, I think that's a good thing.  I don't know the full pharmokoenetics of Flagyl but I would expect that if there wasn't infection, I wouldn't feel much of anything.  Burn baby burn, lol!

I can't imagine someone going on continuous Flagyl.  Holy crap!  Go you!  I think several people here have done that.  Given the reaction I have now, no way.

When I did continuous INHi, it was imperceptible.  I had little if any reaction to it that I could discern so given the reaction I have to the 1500 mg dose of flagyl I've been doing, that's like touching a hot stove element and not expecting to be burned.  No thanks, I'll take my time.

I'm hopeful that in the intermission between pulse 25 and pulse 26, I'll see some improvements, given the distinct reaction I'm having this time. Ra, ra!  Go team, clean those suckers out!

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

How to self-compound

How to self-compound flagyli capsules:

http://www.cpnhelp.org/node/4747#comment-36114<

 

Hunter: Don't think - experiment

In lieu of having the

In lieu of having the capsules to wrap around each pill as Jim suggests, I have come up with a method of taking Flagyli that prevents or minimizes tongue contact.  I open wide, tilt my head way back, and carefully insert the pills at the back of my mouth, behind my tongue, quickly washing them away!  It's worked a couple of times but is a pain. 

I have called around to local shops and found one that carries the 000 capsules Jim mentioned.  I probably won't have time to get any before the end of my pulse on Wednesday but I surely will get them for pulse 26 and beyond.  No sense in doing anything I don't have to (the awkward swallowing method).

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 used to smear jam

John, I used to smear jam on them and swallow fast and never tasted anything but the jam (as long as you don't lick your fingers after doing the smearing part). These days, I just don't care. I take my flagyli (just came off nearly two months of it) and don't much think about the taste, which is only mildly noticeable to me now.

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

Hi Mac         I

Hi Mac        

I remember reading your suggestion some time in the past but had forgotten about it.  The jelly/jam approach might work but then I worry about the consequences of ingesting a strong sugar while on a strong abxi, meaning, what happens with candida and other stuff when doing that.  I would be inclined to take the gel capi approach instead, but thanks for the reminder.

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

Metroi tastes disgusting!

Metroi tastes disgusting! The brief microsecond as it passes over my tongue on the way down is enough to evoke deeply burried memories of chewing on a cigarette butt as a young toddler. (Maybe I dreamed that, but it sure does taste nasty!)

Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.

John- Go directly to

John- Go directly to healthfood store and get 000 capsules. Depending on the metroi tablet size, if you split the tabs and stuff them into the bigger side of the empy capsule you should be able to fit the top on without having to turn them to powder. If they are circular tabs just fit the two halves one on top of the other facing opposite ∩U so the curves fit together. Saves you the taste problem.

 

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, I had not

Thanks Jim, I had not thought about doing that.  A friend of mine buys powerdered supplementsi and empty capsules, stuffing them herself.  Not a bad idea to do with Flagyli, we're only talking 15 pills a month.  Not sure whether there is an inexpensive kit that I could go that would assist in that process.  My friend has one.  Don't think she has to break pills in half but I'm not sure.

On another note, Flagyl at 500 mg is definitely harder to take then Flagyl at 375 mg.  Perhaps part of that is that it's in pill form and doesn't take as long to be absorbed.  However, I physically feel much worse on it then on the capsules which I barely notice most of the time.  Today, my legs are heavy and have been all day.  It's like dragging around concrete trousers and/or boots.

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 too take the tablet form

I too take the tablet form of Metronidazolei. Now you've got me wondering if my taste buds have died  and I haven't noticed because of all my other health problems.  Can't say I've been aware of any taste at all from the tablets. Weird!

2004 ME/CFSi after undiag/untreated pneumonia. 2007 lyme/babesia. April 08 finally a diagnosis CPN, lyme, babesia, c. pulmoni.

Rifampicin 150mg day, Azith 250mg M/W/F, NACi 1200mg day, Metronidazolei 400mg 2 x day every 4th week.