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Anti-bacterial agent used to kill the cryptic form of Cpn. An alternative to flagyl (metronidazole).

Finished Pulse 15- the flagyl vs tinidazole question

I finished pulse 15 friday night, it is now Sunday and I feel I can comment without being in the middle of too much reaction.

I did 7 days of Tinidazole. I decided to do the two extra days because

  1.  I was feeling better towards the end of the pulse, more energy and less brain fog.
  2.  Although I had fairly strong reactions to the tini the first day, my and moderate reactions the next 3 days, I had no sense of the build up of toxicity that I used to get, and could manage these reactions without much more than ibuprophen. I confess I didn't actually do much charcoal except for the first two days of the pulse, because it didn't feel needed.
  3.  I'm getting a bit tired of still being on this thing, still getting reactions, still not feeling 100% after so long on the CAPi (please note, I am probably 55% after getting to about 30% functioning before I started the CAP-- so I've made real progress here), ie impatience!

Now, one of the things I've been wondering about is the differential effects of Flagyli vs Tinin in terms of Cpni kill. I had to switch to Tini because I couldn't do more than 3 days of flagyl without severe nausea, but that was 10 pulses ago at least. So... a breif experiment: I took flagyl for the last dose of my 7 day Tini pulse. 

Tini > flagyl > roto-rooter

With this, my 26th pulse, which went directly from tinii into flagyli, there is dynamite afoot.  Yesterday was the 2nd day which is usually building up blood levels, but this time was straight to the point.  My walking is back to almost a year ago, my right arm is less coordinated, the numbness has returned to my right ribcage.   Maybe it is because I am MUCH more mentally alert and aware than a year ago, having emerged from "foggis extremis" and maybe delusional, but I could swear that I could FEEL the flagyl going after "bugs" in my right leg (bad one) and my neck and right shoulder, and all the worst past parts of my body.  In spite of my usual "tiny" (don't laugh, Sarah) melatonin, I woke up at 5 am, though 6 is my usual wake-up.  It is as though tini primed me and flagyl came along and said "Get out of the way and I'll show you how it's done".  I am somewhat handicapped (ha!) in that I can't remember much of the worst time but my feeling is that the biggest sling-shot of temporary disability eventually results in the biggest recovery.  If you, dear reader, are not board/bored stiff (not funny) tune in in 2 weeks and we will all know how much recovery there was from the tini + flagyl pulse.  Of course, to use the standard medical phrase - this may have happened anyway.

Can we mix tini and flagyl?

As of last Monday,  no one here has had time to sit down.  We clipped the 16 goats who went to the show, "did" their 64 feet, and all the emormous amount of work just to get to the show.  Then the REAL work began.  Four days of 18 hours of running up and down the 300' barn, showing all day Saturday and Sunday, finding time for some food so you can work some more, getting 6 hours of sleep (no melatonin - didn't need it) if you are lucky.  What I thought was instant coffee was not so we heated water with our goat water heater, put the coffee in, and strained it through one of our little blue surgical towels.  They make very good coffee filters.  Pill taking must go on.  The coffee was very good and got our hearts started!  Our junior doe was Grand Champion in 2 of the 3 shows and our now 3 year old went Grand Champion for the third time (making her permanent) and Best  Udder in Show, making us happy.  There can be real life after MSi.  Then the mad repacking of things, the goats, and us for the three hour drive home, evening chores and milking  and crash for some sleep.   As Richard says, we are famous again for a while. 

Tini pulse 15

Started Tini pulse 15 (I'm trying to do these regularly every two weeks, as per doctors orders). About to take dose 4 of a five day, 10 dose set ie twice a day. I promise not to "fix" any website software while I'm on the pulse!

The first dose (Friday eve) of this pulse was a big hit of inflammationi, fatigue and brain fog. Cleared this Saturday morning with about 3 grams Vitamin C, not needing a full flush to do so. Saturday I had surprisingly little side effects, which I attribute to adequate Vitamin C dosing and lots of H20 during the day, much more than I usually do. I had a lot of urinary irritation (Vit. C? Endotoxini?) but felt better and better as day went on. Evening dose gave some inflammation and brain fog, but not too bad. Nice to have a slow Sunday to wake up this morning and clear the fog before doing the morning dose.

I am soo spastic

Hi.  I am 1 week out of pulse #4 of tini.  I feel great.  I want to just get up and go but my legs are soo tight.  I even took baclofen and FYI (from garden of life).  I am worse than baseline physically but feel great mentally.  Also my right arm was very weak 2 days ago and it lasted for a day.  That was a new symptom. 

I realize I am still new somewhat to this protocol but I am surprised at how stiff I am today.  Did anyone else go thru this? 


Tini as springtime

Yesterday morning I took the last (10th 500 mg pill) of my second tinii pulse,  This followed 22 pulses of flagyli over a period of 15 months.  I think I must be getting better.  (Understatement)  Whereas the flagyl from the very first pill put me 40 minutes later in a very long tunnel full of grey mist, low diffuse light, no sensory perception, flat emotions that lasted for days, tini was like a spring day with flowers and Bambi (or our own Lyric, Reprise, Raya, Radiance. Erin and on and on)  I will never know (thank whomever) whether tini would have affected me less than flagyl but we put in a mammoth weekend of hard physical work and I was "normally" tired and slept very well with no melatonin. This is amazing, incredible, on and on and on.  I'm not well but I'm sure better than a year or a year and a half ago.  So I walk with a limp. OK - nobody's perfect.

Teeny tiny tini

Do it NOW!  Tinii must know what it is doing, but it does it more unobtrusively than flagyli.  I was skeptical at the beginning - on this protocol it is usually: pay dearly for your wares, and you get what you pay for.  Well, I sailed through the first tini pulse (relative to flagyl, that is - let us keep some perspective here), and  fifteen days after beginning the pulse (#23) my ever-vigilant legs said it was time for the next one so I did.  Why is this and how does this work?  Has this seemingly low dose penetrated more deeply with much less discomfort (temporary senility) and offered up more bugs more efficiently?  I don't know, but I will certainly do several of these tiny tini pulses and look hard at the somewhat different route of recovery before doing flagyl again.  Last night for a "loading dose" of my pulse #24,  I took a 1000 mg pill and broke another thereby taking about 1300mg total.  This am was a 1000 mg pill.  My physical deficits have not improved dramatically with this 23rd pulse as they do sometimes but my mind has amazingly recovered some memory that I didn't even know was missing! 

Update on the Long Road: Pulse 10/14 (?)

I have not updated my treatment course in quite a while. A number of reasons, the biggest one is that it is such a slow process for me, I wanted to report on the overall trends and not on the momentary changes. I also was experimenting with high-dose pulses and wanted to wait to see the pattern before posting.  I am in the middle of a regular Tini pulse, so I will report the momentary first.

I'm in day 3 of Tini 500mg x 2. After having done so many pulses (this is either pulse 10 or 15 depending on if I count the high dose pulses as one pulse) I am surprised by how slammed I got on the first 2 days of this pulse. Pulses had become gradually less unpleasant: no longer any sacroilliac pain, mild aches, more energy, less brain fog, less sense of "toxic" feeling, less porphyriai. But this pulse I was hit with strong fatigue, burning eyes, pain, pain, pain in muscles and joints, especially back, big time brain fog and some discoordination. I even had that endotoxini coldness reaction, which I had not had in the last regular pulses.

Walking around breathing

Eight of ten tinii downed.  This is my first tinidazole and I am a fervent convert.   With flagyli my dose was usually 375 mg 3xd 5d, while so far with tini I have taken only 500 mg 2xd.  My mental reaction has been much superior but the physical deficits are  on a par with if not worse than flagyl, so I will wait three weeks to decide whether to raise the dose.  By then, I may have observations from veterans of this wonder drug  (among other wonder drugs).

Yesterday, the 3rd day of this 23rd pulse, was a day of accomplishment, really a typical day.   I look back to a year and a half in the past and am grateful once again to be up walking around breathing.


What is a Flagyl/Tinidazole pulse like?

Below are reports of what a pulse is like from users of a CAPi. I'll clean up and edit when submissions stabilize.


Sat, 2006-04-29 08:32
Months on CAP:
2 years; now on intermittent
My diagnosed condition(s)::
cardiac abnormalities, hypertension">i, myalgia
Number of pulses to date::
in the region of 12
My encouraging statement about pulses::

No reactions now.

My initial pulse experiences::
First pulse, nothing except a presentiment that something was going to happen.
My experience after initial pulses::
2nd pulse very unpleasant, with reactions which continued long after. Third pulse slightly unpleasant; no noticeable reactions subsequently.
My experience with pulses over time and recently::
No reactions now.
My post-pulse experienceover time and recently::
Nearly recovered.
What has helped me the most managing pulse reactions::
Plenty of water.
Sat, 2006-04-29 09:34
Months on CAP:
My diagnosed condition(s)::
None -- suspect CFSi
Number of pulses to date::
5 partial (3 day)
My encouraging statement about pulses::

I am basically a little self-indulgent during a pulse:

My Experiences Doing Pulses

This form will give us a consistent format through which to present the variety of experiences people on a CAPi (Combined Antibiotic Protocol) have on Flagyli/Tini pulses. This will help people considering a CAP for Cpni have a better idea of the range of reactions and how they are managed.

tini vs metro

I havent ever looked into the tinii vs metro issue much. I just started tini and it did great things for me so I stuck to it. So I'm not out to broadly say tini is better when I share the following quote, just wanted to make a note of it:

"Jokipii et al [reference] reported and average CFSi to serum ration of 0.43 in patients given 2.4 g of metronidazolei orally; corresponding ratio after 2 g of tinidazole was 0.88."

Journal Title: Scand J Infect Dis Suppl
Volume: 26
Year: 1981
Inclusive Pages: 60-67
Article Title: Pharmacokinetics of nitroimidazoles.
Spectrum of adverse reactions.

I just happened to run across this. I dont know whether workers confirmed or disconfirmed these numbers.

Another Pulse- Unexpectedly worse and better

I took 2 grams Tini last night. This time, despite pre-loading with B-12 injection and gliSODin, I got hammered. Took the dose at dinner, couldn't sleep until 3am from irritation, red, red eyes, running sinuses, aches. This morning I was mega-brain fogged in addition to the above-- just sat clicking links on the computer for 2 hours and drinking Vit C solution. Also, nauseaus on for the first time on Tini, probably because my stomach is still sensitive from getting over the bug last week.

So, why is this dose hitting so hard when the last couple were fine? Same precautions. Same dose. Why the big die-off this time. Go figure. Just goes to show that there are other factors involved here than just the drug and dose.

Still, newbies reading this should know that I am continuing to gradually improve. I was reading Marie's recent post and was struck by her report about why she was so cautious and took her time sorting through the Cpni data before trying the protocol:

KK2's Protocol Update

KK2 Loves Tini!!  **cupid's dart**  Day four of Pulse #3--my very first Tinidazole pulse, however.  Tini is a breeze compared to Flagyli, for me.  No Baclofen, no pain meds-sleeping best I have in months.  I have noticed a subtle change in my gait--I find that if I slow down and increase my proprioception by resting my hands on the top of my legs I walk almost normally. 

MarieR-- this reminds me of how you talk about neurologic re-training of muscles.  And like Rica says, move like you used to--imagine your feet/legs/whatever moving easily like before.  I have combined your thoughts here-lol!  It really works for me.  So exciting!!

Post 2 gram + 1gram

Weathered the 2 gram pulse well. Foggy and out of it the following morning, but improved energy in the afternoon. By Sunday I felt quite energized and had much more cognitive clarity. Decided to do an additional 1gram Sunday evening. Monday morning was a little foggy, but much clearer and more energy as the day went on. Other than some joint aches, I'd call this a success at this point. I'm going to gear for doing 1-2 grams about every third day and see if I can build up from there. I think the combination of the abxi I'm on, the Niaspan and supplementsi have gotten me to the point where I can see the the crucial piece is the Tini now. By the way, this is my own experiment, not at the recommendation of Dr. Powell. He's curious about how I do and sees this as a possible useful strategy. (He gets emailed this before I post it.)

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