Protocols

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Treatment protocols for Chlamydia Pneumoniae, usually using combination antibiotics.

Flagyl first?

Hi everyone, I'd like to get some more advice from you all to take with me to my doctor.

I would like to know if there is a problem on doing something like starting flagyl and doxyi at the same time, or starting with a flagyl pulse and adding in the doxycycline in after the first week or so.

Here's why I ask: I start feeling AWESOME after about two weeks of a flagyl-type drug. Right now, I am FAR from awesome, and I am concerned for my ability to do things like... oh... say...work and make money to live on... It requires a brain, and mine has trouble shifting out of neutral at the moment.

I would like to do a pulse of flagyl first, because of this. Perhaps even a low dose for two weeks, as even a low dose really helps. I need a jump-start or I'm afraid bad things will happen to me work-wise.

Can someone help me with my schedule for treatment?

We have starded the treatment last week. We found a really nice doctor in are nebeirhood that has accept to prescribe the treatment (antibioticsi). the only thing is that I'm the one that has to make the schedule of when to take what. It is a bit overwelming for me. I dont whant to make any mistakes. the protocole is in english and some time's, I am worried that I dont understand the right thing (I am french) we live in Québec, canada. So to make sure, I would appreciate some help. This is the schedule I made, hope it's find. If not, please tell me, and help me with the next step. I included the other medication's that was already prescribed and should be continued as are doctor suggested. Thank you in advance for your help!!!! It is very appreciaded!

Intermittent therapy, theoretical question

hi all, now, dont think i am getting ahead of myself, this question is purely theoretical for me.

I was thinking, when one gets to the intermittent therapy, from my understanding, you go on a couple of weeks of bacterial static, and then on the last five days, you take flagyli. Finishing both on the same day. With the doxyi & roxyi being taken to stop resistance building against the flagyl.

Now, i was thinking, on the day AFTER the last day, there will still be some flagyl in the system (due to serum half lifes, metabolites etc), and the doxy & roxy will be fading as well. Would this not leave you in a state where the CPni could start to replicate again (ie low bacterial statics), while flagyl is still in your system? and isnt this the situation resistance may build under?

Timing of pulses -- any idea why mine is different?

Briefly: I am being treated for something very like CFSi. Other than:

  • being unable to walk around the block faster than a saunter without paying dearly the next day (or two),
  • a little myalgia,
  • low body temp (decreases during exertion),
  • low ESR,
  • brain fog,
  • fasciculationsi,
  • sleeping 2 hrs more per night than is normal for me,
  • and lightheadedness,
I'm in really good health! Seriously! I don't have FMA or IBSi, thankfully. I am quite strong: I can touch the rim of a basketball hoop from a standing start -- I'm really pretty healthy, overall. I mean, my back doesn't even hurt, and everyone's back hurts.

My doctor (in consultation with Dr. Stratton) has me doing 3 days of Flagyli (2x500 mg each day), followed by 7 days off.

Patient Info - CAP medications

In the following links you can find patient information on the common CAPi medications. These were started by Mark, a Pharmacist in Oxford, who combined info from official (drug company) sources. Louise has added further sheets from identified sources.

What to bring to your doctor to educate about Cpn and the protocols

Select out the most relevant sections of the Handbook, as well as a couple of the research sources, so your doc has the medical rationale but isn't overwhelmed with info. 

If this is for MSi, start with the main page materials from David Wheldon's site.<

Add selected material from the Cpni Handbook from these:

  • Multiple Sclerosis and the CPn model
  • Cpn in MS: Over Easy
  • Smoking Guns, Cellular similarities between CPn cellular reactions and MS
  • The Brain and Pathogenic Treatment
  • The great MS debate Do we find CPn?

Then these, add specific articles on your particular disease from the research pages:

Flagyl and antioxidants

Regarding Flagyli and antioxidantsi,

Given the way that Flagyl kills the cryptic formi of CPni, does it make sense to withdraw antioxidants for the length of the Flagyl pulse?

Just a theoretical inquiry- the reasoning is very likely to be over my head but I would appreciate any response!

Thanks. 

 

A Different Perspective

Reading Sojourner's Talon blog and combing through other threads moves me to share some thoughts that have been simmering on one of my back burners.  I have been in one of the trade industries of construction for thirty years.  I have been involved in countless commercial and residential remodel/renovation/reconstruction projects during that time, and besides the obvious analogous changes that take place from start to finish, there are other things that go on in the process that parallel the stories that emerge in the CAPi experience blogs.

You are all under reconstruction:  the building=your body, the owner=your psyche, the architect=the CAP formulators, the permit=the prescription, the inspectors=the doctors, the general contractor=the protocol, the trade workers=the abxi and supplementsi, the work they perform=the effect on CPNi and your bodies at the cellular level.  The same thing happens on every one of these projects---things get worse here and there before they get better.  Maybe a section of the roof has to be removed with rain in the weather forecast,  maybe the plumbing is temporarily out of order, maybe the heat or AC is off because the gas or electricity have to be off, maybe there's dust all over the non-construction areas of the structure, or maybe there's a pile of rubble or a construction dumpster in the yard.  And there are all those strange people in and out, intruding into your private space, no peace.  This tends to make the owner feel very weary, irritable, overwhelmed, anxious, impatient, and sometimes, even nuts...it's a type of suffering.  Once, my company was even kicked off a job for breaking something during installation.  We knew we would have to "eat it," but the owner over-reacted without first finding out our intentions (=quitting the medication to try something else).  Those of you who have experienced a remodel know the type of frustration I'm talking about.

My dear sister's husband

My sister's husband has failing kidneys with high bp under control.  What does this protocol do to kidneys?  Can someone who sees a nephrologist "do" this - as in beginning NACi, supps, later Doxyi, Zithi?  I suggested she get on here but with a niece's wedding and a new grandchild coming within a week it will have to wait. But she looked at the site and "seached" for Rica.  The answer is for her.  I hope this is ok, but I also think it is general interest.  Thanks, all.

Rica 

finishing treatment?

I have a sketchy idea of an answer to this question but thought I would pose it anyway, in case someone had something more concrete than I have.  The question is when does treatment end?  Now, with respect to treatment, I'm referring to the use of multiple antibioticsi - e.g. the Wheldon / Stratton / Vanderbilt protocols for killing Cpni.

I know that one will need to be on and remain on NACi throughout life as a preventative measure against Cpn.  What criteria need to be met before one stops the continuous administration of antibiotics?  Is it just trial and error?  If so, that scares me.  I can see a doctor being too eager to stop antibiotics, resulting in a relapse.  Conversely, I can see a patient being too paranoid to take the chance that it's time to stop.  A relapse would suck, not good.

Editorial: Be Considered in Using Survey Results

When I first started www.cpnhelp.org< one of my dreams was to be able to gather some real data about users experiences and results on cpn protocols. I know from my training as a psychologist that having such a ready data pool is a priceless opportunity. It would allow us to go beyond mere anecdote to some real, statistically relevant results. I was joined in this by Marie Rhodes whose training and intelligent understanding of medical research gave her an interest in gathering some "hard" data, i.e. medically sanctioned measures such as EDSSi scores, blood results and the like.

But when I started the site 33 weeks ago and put up the first survey, we had only 4 people who had met the three month criteria and could fill out the survey. It took us 8 months to make for reasonable numbers that I felt were worth reporting on. The results of that survey can be found at Survey #1 Results<.

Since that report, I've seen others referring to it, like me grateful to have some kind of data they can point to.  We aren't just going on our personal impressions any more.

Having been worried about the lack of data, now I'm getting worried about how data is being used and misused. In case you haven't gathered by now, I'm a worrier by nature. This could be a genetic defect on my part. You've heard the joke about the Jewish mother who gives her son two ties for his birthday? The next morning he comes down proudly wearing one of them, and she says "What's the matter, you didn't like the other one?"

My worries- that these very preliminary results will be referred to as firm findings. The data group is so small (23) that anything in this survey is merely suggestive. And barely that.

This is even more true with any results derived from breaking down findings into subgroups, like the MS/CFSi-FM groups. In that case we have even tinier groups, and less validity to draw on. Such fndings are even less generalizable because each group is now so small that any large differences by any one member within the group will skew the results of that group.

I almost regret having broken the results down this way, especially with those damned charts of which I was so proud, because the charts make everything look so official. Slick presentation impresses us beyond the actual validity of the data itself.

However, our numbers are growing every day. I put up a poll up recently to get a clearer idea of how many people are actually doing the protocol: 35, plus 3 people additional actually done with the thing! Thirty-eight is not bad. When we hit 50+, we might even have some data worth doing statistical analysis on. Getting closer to that every day.

The results of this first survey have inspired Marie and I to take the next step, and build a survey which is much more detailed and will include some hard measures of functioning in it as well. It will take time to develop, but it's coming.

In the mean time, I want to ask everyone to please be cautious about how you refer to any findings of the current survey. If you refer to these findings, please, please use qualifiers like "It looks like..." and "preliminary survey results have suggested..." and the like.

It's good to be enthusiastic about the CAPi's and your own personal experience, but be tentative about how firmly you make claims based on this data. Make sure newbies know that, while the survey found one thing, their own results may differ, and that there is a big range of response within the survey reports.

Thanks to everyone who contributed to Survey #1. I'll be relying on you all to provide even more data next time!


First Report: Results of CAP's Treatment Survey #1

Finally we have the results of our first survey of CAPi's treatment!

The detail hounds might find a few numbers that don't add up. If so, let me know and I'll double check the data. It's as accurate as I could get it given mostly hand tabulation. I'm relying on you to keep me honest, as I'm only one day post Tinii and not seeing everything clearly this morning!

Please remember that these are small numbers reporting in, and a rather rough set of questions. It's a survey, not a statistical study. The charts are impressive, but should be taken with caution as visual aids can look better than the data set they come from!

Find it at:

First Report: Results of CAP's Treatment Survey #1< 

Coming Aboard

My husband "Spotty" (as in MRI) is too fatigued and uninclined to plink around in cyberspace to unearth MSi research and treatment information, so it's up to me.  Besides, he says the letters are beginning to run together when he reads.  He's had enough of that at work by the time he comes home.  I try to read it to him, but he falls asleep within a minute.  Since he loves and trusts me, he's willing to do whatever I think best---this responsibility is frightening!

Spotty has been treated with Rebif (to no apparent avail) by a general neurologist since his diagnosis in January 2005; tomorrow we will receive the last Rebif shipment.  He is waiting to get an appointment with an MS specialist at a university hospital MS treatment clinic in our area.  Not expecting the specialist to offer any useful help, we intend to use him to get a base-line MRI for future use in evaluating the effectiveness of the abxi protocol.  When he declines our request to prescribe the drugs, we will invite him to monitor what happens.  We will try a few other doctors, but we expect to resort to buying them over the internet.

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.

Day One: my Fred

Okay, I had to try it too. A Single High Dose Pulse (otherwise known as a Fred). I hate the term "easier pulse" because it's misleading as our reactions are going to be different, as we've found. I took 1.5 grams of Tinii last night, along with ibuprohen, vitamin C and sleep meds, anticipating a pain response. I have also had 2 days on gliSODin, a high potency antioxidant">i which Red has described elsewhere as helping to counter his Flagyli side effects. I have no idea if the gliSODin has made a difference in this, as I have not felt the distinct effects he reports.

What I do know this morning is that I woke up feeling rather good, a bit foggy and achy, but no more than normal and with more underlying energy. I must say that last night when the dose hit before bedtime I had major red and burning eyes, huge fatigue, mental confusion (I found myself in the midst of a number of activities with no clue what I was doing), and burning aches in shoulders and neck.

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