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

Morning after 2 grams pulse

Waking up after having downed 2grams of Tini last night. Took it with gliSODin which I also did again at bedtime along with 1000mg vitamin C and usual bedtime stuff and 3 ibuprohen. Surprisingly this morning I'm a foggier, but the main symptom is burning/tingling in hands and feet and general acheyness.

Paul's April Fools post gave a big and much needed laugh which let me know my humor (bad as it is) was intact! ROFF ROFF! (see comments after his post for this to make sense http://www.cpnhelp.org/?q=vanderbilt_university_res<). This is my third single high-dose pulse which I've been doing weekly, working up from 1.5grams to the two grams I did last night. I'll see how symptoms proceed today, and may do a second dose of 1.5grams today if it feels like I'm managing well.

David Wheldon Comments on How Flagyl/Tinidazole works on Cpn

There are reasons for thinking that the MBC (Minimum Bacteriocidal Concentration) of metronidazolei against cpni 'frozen' by protein-synthesis inhibitors may be quite low. Metronidazole enters the bacterial cell by passive diffusion. Of itself it has little antibacterial activity, but in susceptible bacteria its highly reactive metabolites break the bacterial DNA at the AT base-pair; these are single-strand breaks, and are repairable. In ordinary anaerobic bacteria the outcome (death or survival) is decided by the equation of breakage versus repair.

Under normal circumstances, the organism, at the first sign of DNA damage, will switch on its 'last chance saloon' repair mechanism. However, this repair mechanism requires the synthesis of at least 15 proteins. The 'frozen' organism is unable to make them. Thus DNA damage is likely to be ongoing and remain unrepaired. New metronidazole is also entering the bacterial cell by passive diffusion all the time, there being a concentration-gradient across the bacterial cell-wall as the intracellulari metronidazole is converted to active metabolite. Further, one might postulate that the endosome is likely to maintain a high concentration of active metabolite: the organism's refuge becomes its death-chamber. If this is the case, one could make an argument for a sustained rather than a high-dose medication. Speaking from my own experience I experienced little during my first five-day pulse of metronidazole (400mg three times a day): the fireworks came on day 4 of the second pulse, and continued long after stopping the drug. And what fireworks they were. I wish I had filmed the muscle fasciculationsi. Metronidazole does not now affect me, apart from its rather nauseating taste.

The Day After Fred

Okay, I won't use "Fred" after this blog to refer to the single high-dose pulse. Must be my judgement returning! Did the pulse Monday, today is Wednesday. Except for some logginess on waking up, today has been a regular day, no particular aftereffects as I had yesterday (pain in knees was significant). Don't know if the gliSODin had anything to do with shortening the effect or not, or if it was just the single dose pulse. I would say it was rough but short in activity, and I am likely to try it again and see if this experience repeats.

End of Day One Fred

I first posted this in response to Paul's comments on another thread, so I'm just repeating it here so it's part of my "Fred" blog. Here's how I've learned to sort my reactions out in terms of my own experience, correctly or not!

  1. Endotoxini reactions seem to typically include feeling chilled, cold, cold hands and feet, and so on. Dr. Powell had a great biochemical explanation as to why this is so, for the life of me I can't recall what it was. I just remember it as typified by chill, cold extremities and peripheral vasoconstriction.
  2. Cytokinei (immunei) reactions are typified by inflammationi, consequent pain, swelling or congestion of tissues, and cascade of other responses like histimine release and so on.
  3. Porphyric reactions seem typified by a feeling of loggyness, depression or anxiety, nausea, disorientation, discoordination (when not caused by loss of muscle control function, see below) bowel disturbance, fatigue, hypersensitivity to light, sound and other stimuli. You note, Paul, that the porphyrins also bind to nerve receptors, especially GABA receptors, and thus interfere with the modulating functions the correct neuroransmitter would perform, hence increased pain sensitivity and anxiety and depression (both modulated by GABA). But increased pain sensitivity is not the same as pain-causing, and I know inflammatory pain feels quite different from hypersensitivity.
  4. Cell deathi seems typified by loss of baseline function (eg worsening of hand function in MS), pain, and so on followed by slower recovery and then improvement above baseline. 

 I see this in my reactions to the Fred pulse. When the dose hit a couple hours after taking it, I started to feel increased chill and cold despite all the things Dr. Powell has me on to counter endotoxin which usually do well to counter these symptoms. Then I had a rather rapid porphyric response (over the next hour or so) where my coordination, mental focus, disorientation really increased. Mac noted how visible my typing problems were on the chat. What they didn't see was how many times I had to type and retype a word before I could complete a sentence, and that poorly spelled and error laden even so.

Daily Pulse Survey

Once a day during a flagyli/tinidazole pulse go to this link, click on the "Pulse Survey 2/06" and fill out the survey. You can do this whether you are on a full pulse or just taking one dose.

You need to be a cpnhelp.org registered user. If so you have been emailed a username and password to use to take it.

It won't register results until at least three surveys have been filled in. So you will have to return later if you are one of the first users!

Click: Pulse Survey Link <

Finished 7th pulse

Monday was my 5th and last day of this pulse. Had about two days of feeling achy and fatigued, third day mildly crappy, and the last two days felt much better, more energy.

Now the day after the pulse I have a mild stomach bug and feel fluey, tired and nauseated-- but the same thing has been through other family members, so I know it isn't from the Tini pulse! Just "normal" crappiness. When I told my wife I dismissively that was "just" having a bout of the stomach flu she kindly said, "Well, you  struggle with feeling bad so much, you could use a break instead of getting the flu too."

I have to say that this pulse felt a more difficult than the last one, and I think it has to do with the extra effect of the INHi. Just a suspicion. I'm still only on 150mg of it, and will ramp up next weekend perhaps, but will also be doing the Tini pulses every two weeks, following Dr. Powell's protocol. So there will be a report on my 8th pulse sooner rather than later. 

Dr. A comments on Flagyl use.

As you know, the original Vanderbilt regimen developed by Dr. Stratton's group slowly added each new antibiotic until a continuous program was reached, including the metronidazolei. David Wheldoni's modification pulsed the metronidazole, after slowly adding the new antibioticsi. For patients who have severe reactions, I would recommend slowly adding the metronidazole in the pulses – for example, the first pulse might just be one 500 mg tablet of metronidazole. Dr. Stratton has agreed (see his comments on the differences in the two protocolsi) that pulsing the metronidazole is quite acceptable and achieves the same end results as gearing for continuous use.

Also, the pulses don’t have to be rigid – plan them around life events like holidays, birthdays, job requirements, etc. Once you learn when the reactions hit – like on the fourth day after starting, plan for this day to be on a weekend. For those that can get INHi, a “double pulse” of metronidazole/INH might be more effective, but do a slow pulse rather than a full pulse.

1st day of 7th Tini pulse: first one on INH

I thought I'd mark this startup of my first day on my 7th tini pulse, and the first one I've taken having added INHi (currently at 150mg). I have no idea what difference being on INH will make, if any. Theoretically, one would think that it's increased potency for Cpni might drive more RB's into the cryptic phase than the other abxi I'm on, making for a bigger die-off reaction on the Tini.

I had about three days last weekend on the INH of feeling a surge of energy and mental ability, then during the week the endotoxini reactions (cold, fatigue, ache) came back. Today on the Tini I had some wave of aches, but feel a bit more energy buzz as I often do in the first hours of a pulse, before the toxin release gets too bad. At least I know that a Vitamin C flush on day 3 usually does the trick. I'll report in as this pulse continues. 

5th Day of the 5th Pulse

Okay, seems to hit at some point no matter what. Got to my 5th day on 1500mg of Tini and have felt great so far- a little toxic but more energy and more thinking ability. Had a high-brow intellectual conversation with my Professor brother in law, a great guy, and was able to sustain a high level abstract conversation-- been a couple of years since I could do that.

Then, 4 in the afternoon a big wave of generalized pain, fatigue, malaise (the French have all the best words for this kind of thing). By 7:30pm after dinner I felt like it was midnight and long past bed. Going to a hot bath and that now, and it's only 9:30.

My guess is after 5 days tissue concentrations are building up enough to reach some deeper levels of tissue where those cryptic bugs are embedded. First four days the rush of energy as mitochondrial mechanisms are freed up, now the toxic build up from the kill.

Into my 5th full pulse of Tinidazole

Into my 4th day of tini, this will be my 5th full pulse (at least 5 days full dose--1500mg per day). So far I'm generally achey, but had distinct bursts of energy, lessening brain fog, and ankle achiness. Not the sacroiliac and back pain, and less knee pain than last pulse. So some things are getting easier. It may also be helping that I'm taking a low dose of Benicar (20mg) about every other day. I'll stay with this tini pulse as long as I feel it's useful. Last time I got to 10 days before feeling too loggy with toxicity. We'll see how it goes.

Sarah's Unillustrated Blog

Please read this very carefully.

I mentioned in my first blog  http://www.cpnhelp.org/?q=sarahs_illustrated_blog#comment< that there was much I didn't remember about the early days of my treatment.  I have never been a terribly good record keeper, but I did start out keeping a journal.  For a few days I even added to this daily, but soon I could go for a couple of weeks without adding anything.  This period rapidly became longer and then eventually I ditched it all, probably in a fit of pique.  I had no intention then of taking part in anything like ThisisMS or this site.  If I had I might have been more circumspect.  In one way it is good that I even now only remember something when someone experiences a similar reaction themselves, because if I had a list of absolutely everything and had put it all down, then I might have risked putting ideas into someone's head.  It is better if someone new to the treatment suddenly comments about various things  -  I'm going carefully here lest I say something that hasn't been mentioned yet!  Let's take one of the most recent comments on the board about a desire for hot food: if someone has not experienced that at all, they might feel that they are not succeeding!  Then there are Karen's blue toes, or my early experience of putting my feet down to the ground when I got out of bed when the weather first turned wintry and feeling the cold floorboards, one toe turning blue and the toe nail actually coming off.  It has grown back perfectly now, by the way!
A very important thing that I want to mention here, though, is something that I only realised a few days ago when talking to someone who started antibioticsi this year, back in Early August, nearly exactly on the same date as me two years previously.  This person is just about to start his third pulse of tinidazole, timed to finish on December 25th and yet I have been saying that my only really severe reaction was during my third pulse.  It can't have been because I didn't experience it until February, so it must have been at least the fifth.  I think it is important to say this because many people are almost looking forward to feeling that something is happening yet will never experience the agonies that other people do and so might just think that they are failing somehow with the treatment, like with the ubiquitous Marshall Protocol, where if you don't go through purgatory and back several times over, you are made to feel like you failing.  Its not like that, if you don't have a build up of CPn in your limbs, you won't feel it there.  I felt nothing in the first pulse: I had already gone through the true herxheimer "almost going down with 'flu"  feeling when starting on the doxycline. It was shortly after this that I nearly gave up the treatment because we both thought it wasn't working.  Remember I was David's first chronic CPn patient.

Sarah's Illustrated Blog......................

Nov. 17th 2005  -  A New Life for 2006
To start my blog, I thought I would add three pictures, so that people can see I am a real person and not just a figment of someone's imagination.  The first two little black and white ones are the only ones that remain of a horrible period of my life, dating from 1999 until late 2003.  I destroyed all the others.  By the second one, taken a few months before my diagnosis, I was looking particularly ill.  This was when my memory was starting to go but I was convinced I was getting better.  The colour one, me and two recently finished watercolours  was taken today.


Jim's Blog 11/12/05

I've pushed this latest Tinidazole pulse to 10 days! Mostly because it was giving me more energy and brain power than I'd had in a while. Thought about staying with it indefinitely, but last 2 days have been less energetic and more deep aching in lower back and other joints. Feels like the build up of toxicity is starting to overweigh the improvements. Besides, I'm at a conference and would like to be able to have a beer by the end of the week! You do know that Tini and Flagyli are a no-no with alcohol? Acts just like Antibuse.

This will also help me sort out what effects I'm getting from NACi. I'm pretty sure the burning feet and skin, especially in the mornings, is due to the NAC. Off the tini it will be clearer. 

Jim's Blog 11/8/05

Just into day 6 of a Tinidazole pulse (my 4th full pulse, probably 10th overall). i'm actually feeling so good on it that I may continue a couple more days: more energy, less brain fog, burning ache in some muscles and joints, but quite tolerable given what I've had before. I actually felt so much energy for a time today that i was almost giddy. Wasn't sure whether it was a neuroi effect, or just that I'm so unfamiliar with having normal energy that it made me feel high!

I had started the amoxicillini a month or so back, and while it made clear how much EBi load I had, I felt I was going downhill over the time I was taking it even though I had worked up to a full dose. The brain fog worsened and I could do little creative thinking or writing. I became obsessive tinkering with the www.cpnhelp.org< site because even in brain fog I could get something working and feel the reward of something concrete, when other projects languished from my pea-soup brain. Also, I was grateful to see and hear others echoing their own stories and feel encouraged to get through this phase. I continue to be hugely grateful for everyone here who has shared their struggles and helped me to feel less alone. Thanks.

So, when I started this tini pulse, I decided to switch to NACi twice a day. I suspect this is some of the burning muscles and joints, but won't know for sure until I stop the tini. But either that switch or the fact that the tini is freeing my mitochondria up from cryptic organisms (or, God knows, some other undetected bug), it's less of a load on my system.

These dips in the road are a problem. Hard to assess from being in the cart. On the one hand, I know how much better I am now than 1 year ago when the walls of the tunnel had closed in on me. On the other hand, each time I've added a layer to the treatment protocol, I feel much worse for a while. The question being, asked from being bumped into the bottom of the cart so to speak, for how long? My wife actually questioned whether I was getting better or not, since she saw me flattened again by the amoxi and, from her perspective, I looked as bad as I had a while back. My energy worker keeps telling me how different my body feels and how much more core-energy I have than I had even a couple months ago. But adding the amoxi flared up a lot of pain, and just when I was feeling able to start exercising again, now I'm waiting for the pain levels to come down.

I don't have any belief that I'll be "what I once was," since it's been so damned long that I've had CFSi/FM/MCS, I really don't know who that would be. But if I have my brain back and some energy and zest for life, and less pain so I can exercise again, I'll be very happy. So far, I'm happy to be on Tinidazole, which is something I'd never expected I would say! I'll check back and let everyone know how long a pulse I end up with.

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