Flagyl
Submitted by Jim K on Sat, 2006-06-24 18:11.
As we have more people on the CAPi protocolsi longer, our community is accruing clincal priceless experience with the different medications used and course of improvement and diffficulties on the CAP. One of these areas for observation and discussion has been use of Tinidazole versus Flagyli, and it's effect on treatment and course of recovery. There has been another thread discussing these, but I thought it was time to restart the discussion now that a number of people have experienced switching back and forth between these meds. So my own comments (posted on Rica's blog also) below.
Tini vs Flagyl-- interesting questions. I have to say, after doing Tini since pulse 3 and then trying Flagyl again for my last pulse (pulse 16) they do have different effects. Not just different side effects. It is possible, as our clinical experience accumulates, that there could even be good reason to do courses of both, or alternate them for pulses.
Post pulse reactions are a bit of a mystery. Please help us to gather some preliminary data about reactions CAPi users attribute to a pulse of metronidazolei or tinidazole by completing this survey. YOU MUST BE LOGGED IN AS A REGISTERED USER FIRST OR YOUR SURVEY DATA WON'T SUBMIT!
If you haven't done a pulse yet, await ye the results!
Submitted by Jim K on Mon, 2005-09-12 22:59.
What follows is an interview with a physician who has significant expertise in treating Cpni who has closely followed the Vanderbilt research over the years. He has garnered a lot of clinical experience, and his insights provide a lot of information both for patients and physicians who are looking to treat for Cpn. He prefers to remain anonymous. We’ll call him Dr. A for this interview.
Testing for Cpn
JimK- So what about serological testing for Cpn?
Dr. A-Testing for Cpn is only useful if you get a positive result. Because Cpn is an intracellulari pathogen, PCRi testing may be negative unless infected cells containing the DNA of the organism are directly tested. That is a problem for any PCR or antigen forms of testing. Serological testing has two problems. The first is that by middle age, most people have been exposed to Cpn and will have IgGi titers against this organism. If you are exposed and have a positive titer, then you most likely have a persistent infection somewhere, but this infection may not be causing symptoms. Thus, a positive serological test cannot distinguish asymptomatic persons from symptomatic persons. The second problem is that even persons with culture-proven Cpn in their coronary arteries only had a 35% positive rate by serological testing in a study done in Germany.
The most sensitive test appears to be reverse transcriptase PCR testing for messenger RNA produced by infected cells. This testing, for example, showed 18.5% of blood donors to have messenger RNA from Cpn in their peripheral blood mononuclear cells.
JIMK- So there’s no easy way to test for the intracellulari phase of Cpn?
Dr. A- It’s very difficult to test for the intracellular phase because the organism isn’t readily available to be tested unless you have infected cells to be tested. Testing for messenger RNA from infected cells appears to be the most sensitive method. However, this method is not commercially available.
JIMK- So PCR is just the most sensitive test for detecting DNA or RNA floating around in the serum or tissues.
Dr. A- If you test for antibodies you are testing for the response of the patient. If you test with PCR you are testing for DNA or RNA from the actual organism.
JIMK- You have said that they are useful if they are positive, but not particularly useful if they are negative.
Dr. A- Right
JIMK- That’s when you might decide to do an empirical course of treatment or something?
Dr. A- Exactly.
Empirical Diagnosis
JIMK- When you make a medical judgment on that, is it based on the disease? Are there also sets of symptoms you might be looking at? In David Wheldoni’s web site, he refers to history of respiratory illness. Are there other useful indicators?
Dr. A- The problem is that there are no symptoms that will hone in specifically on chronic Cpn infection. So if you have a suspicion, based on symptoms or the disease process, you begin with serologyi. And if you have positive serologyi then you may feel you have something to treat. If you don’t have positive serology and you are still convinced that Cpn is causing infection, then my approach would be to try a combination antibiotic protocol empirically, and if the patient has the side effects seen with the so-called “die-off” effect, such as those David Wheldon has described in his WebSite (Ed: these reactions typical of endotoxaemia include fever, chills, sweating, and muscle pains, coryza, widespread arthralgia and myalgia, and temporary worsening of neurological symptoms) then they may well have a Cpn infection. Once you treat for Cpn infection, all these side effects eventually go away!
JIMK- What about Borrellia that creates similar side affects when treated with metronidazolei? Any way to distinguish based on symptoms? I suggested to one person that porphyriai might be a distinguishing factor, any others?)
Dr. A- Metronidazole shouldn’t cause these effects, as it has no activity against Borrellia. It is probably killing Cpn. (Ed. Actually, this is not accurate. Dr. A does not treat Borrellia and was at this time unfamiliar with the way Flagyl is active against the cystic form of Borrellia- see Brorson & Brorson 2004, 1999. In I have been told that some Lyme doctors are using Wheldon's protocol as a primary Lyme Disease treatment. It is true that co-infection of Lyme and Cpn may be an unsuspected complication).
Length of Treatment
JIMK- I’ll tell you, it seems it can take quite a while…
Dr. A- It can take years, much as the initial treatment for tuberculosis did. It’s just like treating tuberculosis in that it takes many months to years of combination therapy.
JIMK- It Seems like people respond faster or slower.
Dr. A- People respond at different rates, which probably has to do with how much Cpn they have, what tissues are infected, and how good their immunei system is.
JIMK- Supposedly, you’re recovering your immune system function over time from disinfecting the monocytes and macrophages. It seems, just from being on it myself for 10-11 months that different tissues get reached at different times. Also, that different agents reach different tissues. When I added amoxicillini to the doxyi/zithi/tinadazole I got a big flare up in body areas I had not had pain in for a while. It surprised me how much additional effect I had, since I’d been on antibioticsi so long.
That’s one of the questions I had. The different protocolsi use different combinations of antibiotics. Do you find different effectiveness in different antibiotics, or is it more a practical matter of what’s available?
Dr. A- I think there are differences in tissue penetration, as well as a lot of other factors that aren’t yet clear.
Choice of antibiotics
JIMK Do you just tend to have a preference starting with certain antibiotic with a patient?
Dr. A- I’m pretty pragmatic and generally use the least expensive and safest antibiotics. I start them on: doxycyccline (Dr. A will attend to patient reaction and have them work up to 100mg twice a day over longer or shorter period, depending on tolerance with any of these medicines), and then I add azithromycin 250 mg working up to once per day Monday/Wednesday/Friday, I work up to 500 mg twice a day for metronidazole. I’ll finally add 300 mg twice a day of Rifamcini to that.
But I may start out working up to 500 mg twice a day of amoxicillin rather than doxycycline.
JIMK you start out with that because it’s the easiest on the patient?
Dr. A- It’s cheap, safe, and tolerated the best. Then after a month or two add the azithromycin Monday/Wednesday/Friday for a month, then the doxycycline, see how they do on all three. I’ve generally added the metronidazole into this and see how they do. I wouldn’t mind pulsing it as David Wheldon does in his protocol (Ed. This is a reference to the Wheldon protocol’s method of pulsing the metronidazole for 5 days every 3 weeks). By pulsing, you can give them time to recover from the side effects.
JIMK- But it sounds like you used to give the metronidazole as a constant, then?
Dr. A- Yes, that’s generally how I proceed.
JIMK- That’s one drug, the metronidazole, that I had the hardest time tolerating.
Dr. A- You think that one’s tough, wait until you get to the Rifamcin!
JIMK- That’s one my doctor isn’t real enthused about giving me (the Rifamcin). Not sure exactly why.
Dr. A- Well, most physicians aren’t familiar with it unless they’ve treated TB.
JIMK- Do you think the Rifamcin is a necessary one for this protocol?
Dr. A- Let me tell you what Rifamcin specifically does. When chlamydial EB’s germinate and transform into the RB’s, which is the replicating form, the first enzyme out of the EB’s is DNA-dependent-RNA-polymerase that Rifamcin specifically blocks.
EB’s are like spore-like infectious form of Cpn. The cryptic formi is also different to treat; it is metabolizing but is not replicating (Ed. The cryptic form is what the metronidazole is directed at, since it is metabolizing but in an anaerobic mode. Our expert is noting here that the EB’s are not metabolizing nor replicating, therefore are not affected by antibiotics that interfere either with bacterial metabolism or with bacterial replication. They are effected only by disulphide reducing agents, like amoxicillin, which breaks the disulphide latice bonds of the EB cell membrane). If you have a large EB load you’re going to keep getting cells reinfected. If you stop them before they start, that’s much better than letting them get started and then trying to kill them.
JIMK- So doxy/zith is inhibiting the replicating form?
Dr. A- Yes. Remember, you are trying to formulate a combination therapy that attacks all of the potential forms of Cpn. And so, N-formyl-penicillamine, which amoxicillin is metabolized to in the body, destroys the EB. It is these spore-like, non-replicating, EB’s, which invade your body’s cells and once inside transform into RB’s capable of replicating. In this transformation the first enzyme employed is DNA-dependent-RNA-polymerase, which allow this transformation. If they are in the RB replicating form, then azithromycin and doxycycline will interfere with that. If they are in cryptic form then metronidazole goes after that. If they are EB’s the amoxicillin takes care of that. If they are transforming from EB’s to RB’s, where they are particularly vulnerable, Rifamcin takes care of that. It takes a lot of different antibiotics because there are lots of different life forms. Otherwise it just goes from one life form to the next.
JIMK- So, adding the Rifamcin is to be as complete as possible?
Dr. A- It is hard to say if you can get by without the amoxicillan, or the Rifamcin. I suspect that you can in younger healthy persons. I tend to think that they are especially important for those who have been sick for a long time, and likely have a lot of EB’s looking for homes. I want to destroy these EB’s (amoxicillin) or if they are finding homes I want to short-circuit them (Rifamcin). The transformation from EB to RB is where they are particularly vulnerable.
JIMK- That is really important information to get out there. Especially for those of us who have, indeed, been sick with this for a long time. I knew when I added the amoxicillin to the Wheldon protocol that I was killing something additional. And it was so clearly, highly inflammatory too; by the amount of pain and inflammationi I had in reaction to it.
Dr. A- You probably have a high EB load. Those were probably Elementary Bodies that you were destroying. By the way, you can use penicilamine directly, but that’s a very scary drug.
JIMK- And that tends to dump a big load of the endotoxini when they get popped?
Dr. A- That and a lot of other antigens. The response to the antigens is somewhat dependent on your body’s immune system.
JIMK- So you’re getting a cytokinei reaction.
Dr. A- Yes.
JIMK- Do you find tinidazole as effective as metronidazole?
Dr. A- I don’t see why it wouldn’t be. It’s just been recently approved in the US, so I have no experience with it, or what they are charging for it!
JIMK- I find I tolerate it much better than metronidazole. I got so sick on that, which I believe is more a drug side effect than a kill effect.
Dr. A- Well, I wouldn’t necessarily see it that way. My experience is that people who don’t have any Cpn organisms can tolerate metronidazole without any side effects. You’re talking to someone who has had patients taking metronidazole as a post treatment preventative for a number of years without side effects.
JIMK- So your bet then would be that I got sick from the metronidazole because it was killing cryptic Cpn, not because of drug side effects (Ed. which would suggest that tinidazole is not as potent in this as metronidazole).
Dr. A- There are two explanations as to why you are tolerating tinidazole better. One is that you just knocked down enough of your Cpn load with the earlier metronidazole pulses. And people have done that; they say they can’t tolerate the metronidazole and then after a time they can. The other is that you were getting better penetration with the metronidazole than with the tinidazole.
JIMK- So it may be that the tinidazole is not quite as strong, so it may be a good way to gear up over time to the metronidazole.
Dr. A- Yes, but if you were to try metronidazole for a couple weeks and you didn’t get any side effects, then you probably don’t have much Cpn.
Brain Fog
JIMK- You see brain fog a lot in Cpn patients; do you see this as CNSi involvement or more as an effect of endotoxin?
Dr. A- It is most likely a combination of endotoxinsi, porphyrins, and cytokinesi. It may largely be porphyrins for the simple reason that reactions from porphyrins last longer than those from cytokines and there’s no fever.
And you know you are better when…?
JIMK- So that’s the kind of “gold standard” test: that you can take metronidazole and not get hammered?
Dr. A- And Rifamcin. Rifamcin has deep tissue penetration too. So if you can tolerate the metronidazole and then I challenge you with Rifamcin and you tolerate that as well, you have very few Cpn left. I periodically challenge patients with a short course containing metronidazole and Rifamcin to see if they continue to be cleared of Cpn.
JIMK- The complete challenge.
The more I understand, the more I appreciate how tough a bug this is, and long it takes to get it, how complex it is, and all the tissues you need to penetrate to get there.
Dr. A- Not only the tissue penetration, but also both the organism and your cells have active efflux pumping mechanisms to pump out the antibiotic. You have to work against these natural mechanisms to keep adequate concentrations in the cells. Rifamcin tends to inhibit these efflux pumps. I also use another drug, Quercetin, a bioflavonoid that also acts as a cell efflux inhibiter. It works on a different efflux pump than Rifamcin. It’s, also active against Chlamydia on it’s own.
JIMK- Plus Quercetin is also an anti-inflammatory and free radical quencher.
Dr. A- But the antichlamydial effect may be more important than it’s anti-inflammatory effect.
JIMK- How much Quercetin do you use a day—I tend to take three caps with the bromelain.
Dr. A- I tend to use 2 caps a day containing 500 mg of Quercetin along with vitamin C.
Differences in treating different diseasesi?
JIMK- Do you see differences in treatment based on disease entity, or more on the person.
Dr. A- That’s hard to say. My generalization is that: the longer the person’s been sick and the sicker the person has been, the more problematic the therapy is going to be. In addition, the older the person is, the more likely that they’ve had a Cpn load building for a long time without knowing it. Their ability to tolerate treatment can be low, both from the high Cpn load, and from an aging immune system. On the other hand, I know of a young patient who had a very strong family history of cardiac disease. For this reason, his doctor placed him on the regimen. He had very few reactions. He was in his early 30’s.
JIMK- He had some reactions, which let you know that he had some Cpn building.
Dr. A- Yes.
JIMK- I know in my family there’s both cardiac disease and Alzheimer’s, and another sibling has fibromyalgiai. So there may be a common link genetically that is more about the susceptibility to Cpn.
Dr. A- AOE4 probably has a place in Cardiac disease, Alzheimer’s and MS.
I’ve observed that the recent memory problems that come with brain fog for patients can really lift once the Chlamydia is gone, even in those 50 or more.
Porphyria
JIMK- On the porphyrin stuff- do you think the porphyrin testing is worthwhile, or do you just assume it and treat for it anyway when you are treating for Cpn?
Dr. A- The trouble is that you really have to test for the fat soluble porphyrins to get the best data, and that involves a 24-hour stool test, and you have to freeze that sample and so on. You need a 24-hour urine to look for water-soluble porphyrins.
There is a poor man’s way to check for porphyrins. It seems that if you have porphyrins, you will have an increased hemoglobin level, on the high end of normal on most CBC’s.
JIMK- when I was first treated I was very low on iron, which I understand is heavily used by chlamydial metabolism. Would that make a problem for using hemoglobin’s as an indicator of porphyrins?
Dr. A- Initially, low iron would mask the increased hemoglobin you would expect with porphyrins. Once your iron levels are normal, it would no longer mask the elevated hemoglobin. But in general, a high-normal hemoglobin and high-normal hematocrit are both good indicators of porphyrins.
JIMK- I can’t tell you how unusual it is to speak to a physician who sees it his or her job to actually investigate and reason out what’s going on in a patient, rather than look to see which already-known-box to put them in. I spoke to David Wheldon about that and he said, “Yes, I know, if I’d listened to those doctors I would be a widower now.” Kind of put home the point.
Submitted by katman on Wed, 2010-07-28 14:11.
Here I am back again with a couple of things I meant to say before. The first is just a funny coincidence - my blood pressure at my check-up was my weight over my age: 106/70. The other has nothing to do with our protocol. It is that next week we are getting solar hot water! We almost went entirely solar at the beginning but "chickened out" and decided to try this first. There is a federal tax rebate of 30% and NC has a 35% tax rebate in addition. A few days after our decision, we learned that a very famous dairy goat judge, breeder, and dairy owner is doing the whole thing. She is in CA and hers is the second largest solar profect in CA. This is incredibly exciting that all this is happening! Rica
Submitted by katman on Mon, 2010-07-26 14:24.
It appears that living right can do good things. And the young coyote is alive and well - she was not euthanized, but instead released, due to a catch-and-release program! Today was my annual physical, and I passed with high flying colors. Such adjectives as: phenomenal, amazing, beautiful, and several others were used. I was told again that my doctor has fully realized that there is a Vit D deficiency across the county - he used the word "epidemic" - where have I heard that before? Incidentally, mine is again down to 65, so I will increase my intake again from 8,000 to 10,000 for a while. My level seems to go up or down as my diligence - unwitting or not - ebbs and flows.
Submitted by davethegreat on Mon, 2010-06-28 18:07.
I finished my fifth pulse on 6/20/10 and didn't feel well when I finished. I had my blood draw on 6/22/10 and the ast went from 21 to 41 and the alt from 50 to 73. My doctor says he cannot continue treatment untill the numbers get better. The funny thing is the bilirubin which has never been in range in a decade 1.6-1.7 is now all of a sudden 0.9 and that doesn't make sense to me. I finally start to get well and... . I need help to understand if this is normal. I had the Doctor repeat the test just now but won't have results for a couple days. I have CFS. Help. I am in Sacramento ,Ca. I understand Dr. Stratton is here. Is that true? Dave
Submitted by 4dogday on Wed, 2010-04-14 22:17.
Just for my own records (since I usually loose any paper that I write anything down on) I took two Flagyli yesterday. I really wanted to do 3, a full pulse, but read some people's reactions and remembered Jim's advice to be conservative as well as my strong reactions to the first two abxi. So I don't know if I broke the duck or not, since I don't know if I need a full day's pulse to do so. But I took the plunge anyway. I have no side affects yet, unlike taking the first two abxi, which gave me almost immediate side effects. But from reading everyone else's reactions to flagyl/tinii, I know that reactions may surprise me much later with this 3rd abx.
Submitted by 4dogday on Tue, 2010-04-13 15:27.
I've put off starting flagyli for ALMOST 3 YEARS for various reasons. The last was because the doc wanted me to take Arimedex and didn't want confusion of side effects. I eventually elected not to take Arimedex, however, and just now got the guts to start flagyl. After 3 years, this is a BIG jump for me, so I'll probably be here looking for support if I find myself vomiting in the toilet...or...if nothing happens. I don't know which would be worse. I'm going to start slowly and hope for something in between. I'm taking one pill as soon as I stop typing.
Submitted by heartprints on Thu, 2010-04-08 12:12.
Hello - this is my first post :-) Been reading info here off and on for the last year....Been a patient of Dr. Powell for almost 2 years. It's been a long slow start as at first I was too sick to tolerate any of the antibioticsi they tried and had very severe candida and digestive problems. Finally now I'm able to tolerate low dose flagyli (500mg/day) 5 days on, 5 off. wondering if anyone can give me some input on the following: Re/ Ursidiol - it caused me gall stones and I couldn't tolerate...should I try cholestramine or something else as a "mopper"?
Submitted by jeanneroz on Wed, 2010-04-07 12:35.
I picked up a comment in another post (by K23la) regarding Biofilm Testing and it perked my interest. I 'm not sure what advantage it would be to know specifically what pathogens are hiding in the biofilms we have as the removal process is, I believe, the same. Perhaps some of the more scientifically-minded here may have input. The test is available at Fry Labs in Arizona and your own prescribing doctor can order it (the test kit will then be sent free). If you order it yourself, the test kit is $15.00. The cost of the Fluorescent DNA Stain is $350.00. All information is available at http://www.frylabs.com
Submitted by iwillgetbetter on Tue, 2010-03-23 09:08.
Hi I took this protocol to my Lyme Doctor he said he knows nothing about Whendols Protocol and he said he's willing to try it. I'm on a shot of Bicillin once a week, intermuscular injection then I take a day dose of zithromax (200mg) now I've just received Flagyli. My doc said start out with a 1/4 tablet a day and work my way up, to see if I can tolerate it. Should I take this every day and then Zithromax every other day? I'm so confused. I'm telling the doc what to do, not him telling me and I'm a little scared. Thanks
Submitted by katman on Wed, 2010-03-03 11:42.
This is a very short blog about a tortoise in the slow lane. For many years (how does this happen? - we shouldn't blink!) I had a solitary discussion about arthritis: (1) I was getting very old very fast. (I was 55) and everything hurt. (2) My hips are in agony. (3) My fingers and shoulders hurt all the time. (4) My neck is so stiff that I can't turn my head. It hurts even when I don't try to turn it. Most of my joint pain went away while I was "sleeping" that first couple of years. Then my hips were incredibly painful during walking - then it went away. My finger joints were worked on one at a time and have slowly stopped hurting, though still have some residual swelling, probably permanent, which I accept.
Submitted by katman on Sun, 2010-02-07 11:28.
Many times I read for the great pleasure gained and to satisfy my curiousity, but I discovered Greg Mortenson, Three cups of Tea, and now Stones into Schools. Along with wishing the Nobel Prize for Medicine for our cpni crew, I wish the Nobel Peace Prize for Greg Mortenson. And I am hardly ever much affected by movies, but last night we saw "Seven Pounds", with Will Smith, and will probably be affected for the rest of my life. As for my own cpn protocol against PPMSi, I still chip away daily with my five abxi plus caffeine. We all tweak and listen and tweak some more, but I seem to have stumbled on a tight turn of the screw, thanks to John (farandwide) and Paul.
Submitted by hdwhit on Mon, 2010-02-01 11:53.
I last completed a maintenance pulse in November 2009. I had my annual visit with the neurologist at the medical school in Houston in January 2010. EDSSi now "about a 2" versus the "about 2.5" it was in January 2009. As he considered my progression (or lack thereof), he asked whether I was taking antibioticsi. I told him none since November 2009 which left him scratching his head since he can't account for my "atypical progression". (For the record, I previously discussed antibiotics with him and he dismissed it since he is of the belief that M.S. is caused by a virus).
Submitted by kimberlyskach on Tue, 2010-01-26 22:45.
What if I'm healing quickly? I feel like I am living a miracle. After 25 years of interstitial cystitisi and fibro, the CAPi has me basically well within 4 months. I had the high antibodies for cpni. I had started Cortef for adrenal exhaustion and thyroid meds for Hasimotos...so I was already about 70% well from tackling those issues. I contacted Dr. Stratton and he gave me his protocol (doxyi, Biaxon, Flagyli) and I seem to be healing quickly. I tried stopping after 2 months and the pain came back in 10 days....it was horrible! I just finished 2 more months and am commited to going at least 6 full months.
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