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Joined: Jul 28, 2005 Posts: 1330 Location: Sydney, Australia
Posted: Fri Nov 11, 2005 7:18 pm Post subject:
CureOrBust wrote:
the pins and needle in my feet have greatly reduced in the last two days
Just to be clear, the tingling/pins & needles in my feet have returned basically to what it was before the last Flagyl pulse. They have greatly reduced from the worsening near the end of the flagyl pulse.
I am generaly improving slowly day to day (on Statins & LDN) so unless there is a sudden imrpovement after Flagyl, its hard to attribute it to the abx at this time. I'm kinda under the impression that my nerves are repairing pretty much as fast as they can, the abx I am hoping will stop future damage.
As I have said before, my big test of treatments will be when I get a cold/flu. If I dont have a relapse after that, I will be v. happy to say the least.
My comparison to a bladder infection upthread was kinda misleading. Intracellular bacterial infections like TB and tuleremia can take quite some time to resolve under treatment, much longer than a bladder infection. (Im not quite sure yet what all contributes to this.)
So, if MS, CFS etc are in fact simple bacterial infections, some of the difficulty/duration of treamtent could come simply from an intracellular location of the germs. But I still think theres some other unknown factor(s) at work.
Joined: Jun 18, 2004 Posts: 1482 Location: Bedfordshire UK
Posted: Sun Nov 13, 2005 8:47 am Post subject:
Cureo,
Certainly the real test will come when you realise, somewhere along the line, that you don't get relapses anymore. Of course, for those like me, who had become totally progressive, you need something more. Of course, feeling that you are going uphill rather than down is a start, but there is nothing like being able to compare different MRIs.
Eric,
Talking here more specifically about MS, it is undoubtedly a multifactorial disease. To start with you have to be genetically predisposed to get it, then a tendency toward Vit D deficiency, then a CPn infection and probably a few other things as well. CPn has a very complicated life cycle, which goes a long way to show how difficult it is to eradicate. Have a look here, if you haven't already seen it: http://herkules.oulu.fi/isbn9514269853/html/x467.html _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Sarah,
I dont think the reticulate/elementary cycle is Cpns secret, since the same alternation is also found in urogenital C. trachomatis infections and Cpn pneumonias that can usually be cleared right out with abx.
Its similar with acute lyme borreliosis. The majority who contract it dont get chonic disease.
In sick people, something different may be going on - and it may involve the persister form of Cpn? Since last summer I've been pondering the possible significance of multi-drug efflux pumps in our illnesses. They are unique proteins found in bacteria and man that can pump essentially any drug across a membrane, such as the chlamydial membrane or the membrane of a host cell.
If you have cancer and your treatment leaves a few cells that survive because they had extra high levels of these pumps that pump out the drugs, those cells can give rise to new tumors in which every cell has that charecteristic. Then you have a tumor unresponsive to essentially all drugs (tho I guess you might get lucky and find one which is a relatively poorer substrate for the pumps).
M. tuberculosis has a strong MDR efflux capacity - if it didnt, you could just knock out TB with penicillin or tetracycline. People often say Mtb's resistance to most drugs is due to its rather impermeable cell envelope. This is only half true. H Nikaido says a typical abx would finish penetrating the Mtb envelope in about 3 minutes if it werent for the MDR efflux pumps pumping it back out as it trickles in. We could all afford to wait 3 minutes if that were all it took!
Anyway, I'm rambling. One piece of the puzzle I cant fit together is why many of the idiopathic immune diseases seem to be, on average, somewhat more responsive to abx when treated within a couple years of becoming serious. I can think of some possibilities in terms of accumulating persister forms, etc, but in my mind they all just raise more questions.
I've seen the "MS map" of US states, showing higher prevalance in the north, but do you know if its true that MS is essentialy absent altogether from the tropics?
Tho MS certainly has a very strong heritability, the question is, is it outside the range of heritabilities found in the classical infections? I've been looking into some stats on leprosy, one of the most heritable of the latter. It doesnt look to be as heritable as MS, but may come in not too far behind. I'm not done tracking down data on this one yet.
Joined: Jun 18, 2005 Posts: 70 Location: Ohio, USA
Posted: Tue Nov 15, 2005 9:56 pm Post subject: Take another read of Stratton patents, expert comments, etc.
Eric- I think your questions and observations are very thoughtfully made, but I also think you haven't delved deeply into the Cpn literature yet. )Other Chlamydia's also have persistence due to EB's and cryptic conversion for example.
Dr A (interview on www.CPn Help) mentions the efflux pump issue in his interview:
Quote:
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.
In other words, there is quite specific knowledge about some of these things for Cpn, and also some very careful, full, research on what makes for sucsessful treatment. The protocols are general, but Stratton, et al have ways of subjecting infections to much more sophisticated testing than is yet available, which can not only measure the multiple phases of a Cpn infection, but also suceptibility testing for the most sensitive agent, which can vary from person to person. The patent materials are particularly detailed on this.
Also see (again on the www.CPn Help site) the interview with Dr. Powell who has used INH in recalcitrant infections with great sucsess, based on the findings in the original Vanderbilt work that this agent cleared infections from macrophages more effectively than other combinations.
I'm emphasizing this because I think there is much more known, especially about Cpn, that doesn't require a lot of speculation. The science that's actually out there has not been listened to much. Only a few clinicians have enough hands-on experience to even look at adapting the protocol to different patient needs, or what to are reasonable next-step dosage or med changes with challenging cases (although, aren't we all!). _________________ On Wheldon/Stratton protocal since December '04 for non-MS Cpn: CFS/FMS
Ohio, USA
www.CPn Help
Joined: Jun 18, 2004 Posts: 1482 Location: Bedfordshire UK
Posted: Wed Nov 16, 2005 4:44 am Post subject:
Eric, I didn't reply to this yesterday because I had more pressing things to attend to, but Jim seems to have covered most of it.
You did mention, however:
Quote:
I've seen the "MS map" of US states, showing higher prevalence in the north, but do you know if its true that MS is essentially absent altogether from the tropics?
No, MS is not absent altogether from the tropics. It is true that it is a lot less common, probably due to a combination of the natural availability of vitamin D from the sun and the sun's ability to hold CPn at bay. However MS is on the rise in India and has always been more common in, say, the Arabian peninsula, among women. It doesn't take much to work out why both these cases should be. Lack of sunshine. So because it is a beautifully sunny day here today, I am going out now to vacuum up the latest fall of leaves before getting on with some work.
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Eric- I think your questions and observations are very thoughtfully made, but I also think you haven't delved deeply into the Cpn literature yet. )
Fair enough, I will scour the patent by and by, perhaps my thoughts will change. Conversely, if you read the Wirostko/Johnson oculitis bacteria papers or the Japanese sarc microbiology, or looked at alot of refractory Whipples disease case histories, you might be more prone to wonder whether many diseases could share one or a few common keystone aspects which arent specific to any one bacterium.
Quote:
Other Chlamydia's also have persistence due to EB's and cryptic conversion for example.
Yes, C trach is present and metabolically active in the joint in chlamydia-associated arthritis, and some feel that disease is pretty likely to be a simple uncomplicated infectious disease. It is at best slowly/unevenly responsive to treatment. On the other hand, the C trach urogenital infection is usually easily eradicable, at least according to my reading. If EBs are present in a rapidly-eradicable infection, it can be concluded that EBs per se dont cause failure of abx to rapidly eliminate symptoms.
Joined: Jul 28, 2005 Posts: 1330 Location: Sydney, Australia
Posted: Mon Nov 28, 2005 2:03 am Post subject:
Tonight is my 7th day of my 4th flagyl pulse. The previous 3 have been 4, 5 and 5 days long. I have been on Doxi and Roxi (the wheldon protocol) since about the 10th sep this year.
I didn't undergo any severe reaction. I do appear to wake up a liitle nauseated, and I think I feel a tiny bit depressed, maybe.
I think I will go with the Roxi & doxi for a little longer (avoid resistance build-up to the flagyl), and then give this another go next year. I think if my MS is caused by an infection, i have caused a pretty big dent thus far, and I think my body may benefit from a rest from one of the drugs i'm taking; currently 80mg Statin, LDN Antibiotics as well as suppliments.
Joined: Jun 18, 2004 Posts: 1482 Location: Bedfordshire UK
Posted: Mon Nov 28, 2005 8:00 am Post subject:
Oh, I should have read this one first! So you are carrying on with the first two, but giving the flagyl a break. That's fine. You can have a break from LDN and Statins as well, but don't abandon the supplements completely.
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Joined: Sep 25, 2005 Posts: 371 Location: Chicago area
Posted: Mon Nov 28, 2005 9:52 am Post subject:
Hey, don't give up so quickly! I started abx on October 6th and plan to do the full year, come hell or high water. While I've had little reaction to the abx, per se, I've had GOOD reaction in the MS department: brain fog gone, lethargy gone, NO numbness in fingers/toes since I started. It's only seven weeks and I know it's doing something good for me. I started flagyl yesterday and no reaction there, either, except to the horrible taste, which I'd forgotten all about.
My fear would be backing off the abx and allowing the miserable infection to march forth again. I keep saying this is an investment in our HEALTHY future and the only way to get there is to keep going, even through the miserable times. I can do one year of this if it means the rest of my life is quality, instead of trash. _________________ 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
Joined: Jul 28, 2005 Posts: 1330 Location: Sydney, Australia
Posted: Thu Dec 01, 2005 5:39 am Post subject:
OK, I might have spoke too soon.
The next day after I finished my flagyl pulse its quite possible I was a little worse off. But its hard to be sure (this condition is defined by its ups and downs...)
I think I have decided to keep on with the doxi and roxi, and just have a long break from the flagyl; i was always planning on keeping with the roxi and doxi for a week or two. Its hard to tell if the times I feel a little worse are a minor relapse or a reaction to flagyl. So i think if a give myself a number of weeks to get better, it will be clearer what is what (at least in my mind). I think in a couple of weeks the tingling in my feet should be all but gone. It will also give me a chance to see if these minor relapses occur randomly without flagyl.
Now for some other info...
I did notice that during the period of the last flagyl pulse, i had some minor aches in my joints. I put it down to slight pulling of musles when I walk and over-correct from losing my balance, or just walking bad. Also, when I filled my last script for roxi, the pharmists noticed on her computer that I was on simvastatin also. She said (not knowing why I was taking either, just that it was off label) that if I experience any joint pains, i should contact my doctor. As the roxi has the possibility of increasing the statins in your blood (or something-or-other). So that was an easy secondary explanation of the joint pain. But its not as obvious now, and the only thing thats changed is the flagyl.
I will keep on with all three treatments, and the suppliments (i might have a play with my bottle of NAC...), and keep you all informed.
In the very least, If i am not mistaken, doxi and roxi may be stopping me from getting a full blown cold or flu (my major trigger for a relapse) and therefore its probably effective as an MS treatment as that alone.
Joined: Jul 12, 2005 Posts: 247 Location: North Carolina USA
Posted: Thu Dec 01, 2005 9:47 am Post subject: Joint aches
My life has become incomparably better in the past year. I have been on a strict abx regimen for 14 months with ups and downs and mainly an almost mindless adherance to this routine. The sun is rising slowly and I can now speak from a frame of mind that is emerging from the fog. If I have to stay on this regimen for another year or even more I can do it. I keep repeating that the alternative is horrible and to reach the other side you have to ford the river. You can't go halfway and turn back.
My hips ached almost unbearably all last winter. Now they don't. My shoulders and neck ache now but are better. My leg and lower body on the right are no longer mere appendages but are again part of me. My energy level which was about 10 minutes on a good day, lasts 14 to 16 hours.
My message is stronger than ever- STAY THE COURSE! This is becoming our mantra. There are many friends here- just yell.
Rica _________________ EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal
Joined: Sep 25, 2005 Posts: 371 Location: Chicago area
Posted: Thu Dec 01, 2005 9:47 am Post subject:
CureOr... Okay, your homework assignment is to go back and read David Wheldon's protocol, in which he specifically addresses relapses and pseudo-relapses. Sounds like you are experiencing classic symptoms of the cure working the way it's supposed to! And remember how Rica has ALWAYS gotten much worse and then HUGELY better. Hang in. - - I'm on day four of flagyl and wish I was having your response. I am having virtually NO reaction and don't know if I'm lucky, or as Marie says "the only one this won't help". Scary, but I'm committed to this being the right path. _________________ 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
Ok Let's be clear. I said in a moment of poor reaction "Woe is me I'm the only one this won't help". I just don't want the reading public to think I am not believing that Mac will be helped. Remember that Sarah did not particularly react until flagyl 3 Macintosh! Are you pretty functional to begin with? I think it makes a difference: harder to see.
Marie
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