I haven't blogged my treatment for a while, as I've been waiting to see if I would stick with a shift in protocol. So far, still with it, so thought it might be time to report in and get other's thoughts. New folks, please read this as informational only. It does help clarify Dr. Stratton's use of the continuous rather than pulsed protocol, but the rest of the hypotheses here are presented as my own speculations, not scientific fact.
I've been on the Wheldon (pulsed) CAPi for over 2 years now, with the addition a year ago of 1/2 INHi and some supplementsi added by Dr. Powell. Last spring I had really turned a corner on treatment: my pulses became relatively mild; I had recovered about 60% of functioning compared to my starting point where the cliff of disability had been right in front of me, and was able to do physical projects like my kitchen that I hadn't been able to even think about for years. Grateful, grateful, grateful. Thank you Dr.s Stratton, Wheldon and Powell, and your guiding Muses. Summer '06 was a good one for me health wise, the first in years. I hovered around 60-68% level of improvement, with some really bad days scattered in between.
But then I seemed to reach a plateau. Through the fall of 2006, and various life stresses and such, I actually seemed to feel gradually worse. Dr. Powell suggested we try Rifampin to gear up treatment. I could tolerate 1/2 dose (150-mg/day) for 2 months, but never got improvements. It too made me feel worse: more brain fog and inflammationi. No upside at all. And my pulses suddenly became much harder-- suggesting that the Rifampin addition was kicking more Cpni into Cryptic mode. I stopped the Rifampin at Dr. Powell's review and a bit later added 2000-3000 units of D3. Again, I felt more die-off, and clearly pulses were worse suggesting that D3 was indeed antibacterial for Cpn, but Cpn was converting to Cryptic phase in response or enhancing apoptosisi. The similar reports from some others on-site (Red for example) suggested this wasn't just my personal response. This was tolerable, so I stayed with the added D and following pulses began to improve to pre-D levels.
I did some thinking about this and came up with a couple of hypothesis. A discussion with Dr. Stratton when I was gathering material for the Chronic Fatigue article for the Handbook also leant some credence to these thoughts.
The Two CAP versions- Continuous and Pulsed
Remember, we have always had two major versions of the CAP protocol (plus Dr. Powell's variations and additions which he individualizes to his patients). The most common one, especially for MSi patients, has been Dr. Wheldon's pulsed treatment version of the Vanderbilt protocoli. Dr. Wheldon's pulsed flagyl treatment achieves simultaneous use of all agents, but does so every 2-4 weeks. His intention with this protocol, vetted and supported by Dr. Stratton's clinical opinion, is that it mitigates the more brutal reactions to the flagyl, particularly the mass apoptosis which can be so problematic in early treatment and in certain diseasesi loci like the nervous system. The break in between pulses gives time for cellular clean up and replacement, and tissue repair and reorganization. This approach has been successful clinically for a large number of people, stabilizing their disease process and regaining functioning gradually over time. It is, as David intended, also the safest route for most patients. This is especially helpful when the prescribing doctors are not yet skilled in the nuances of this kind of treatment.
The other CAP version is Dr. Stratton's original "continuous" treatment protocol. This is the protocol he has used in all the research done in CFSi and MS. Dr. Stratton starts gradually with one of the antichlamydials (usually Azithromycin because of it's low liver toxicity), increasing dosing gradually, one agent at a time as tolerated. He then builds up until all the agents are being taken simultaneously and continuously. He continues this until no reactions are found. This is the protocol he used on his original research, and all the case studies presented. Biologically, this gives no escape route for the Cpn. He calls this putting the Cpn in "a biological conflict." He may, when no reactions are found to the basic CAP agents, then test adding a trial of stronger meds like Rifampin or Rifamycin to the ongoing CAP. The shorter time span of improvement indicated in the case studies (6-12 months) is likely due to this higher intensity protocol
We are often asked here at www.cpnhelp.org "What is the difference between the protocolsi given in the handbook? Why use one or the other?" We have not answered this question, feeling that the decision on this lies with the medical professional who knows the case and condition of the patient best. Clearly the predominant protocol use is of the Wheldon, pulsed protocol. It is also clear that almost all of us, regardless of disease diagnosis, require quite a period of pulsed treatment anyway, and the thought of continuous use of flagyl/tine is clearly out of the question for quite some time. I could not even entertain the possibility until two+ years into treatment.
During my interviews with Dr. Stratton for the recent CFS/CPN article, I discussed these protocol differences with him and some of my own hypotheses. He felt that in a number of cases it will be difficult to completely eradicate Cpn in a pulsed treatment, which is why he has stayed with the continuous protocol for many of his patients. He felt that especially for some diseases like RA, long term CFS/FM, and certain MS cases, the tissues involved may require continuous dosing to get to adequate cryptic kill. He also said that for most patients, due to the severity of early die-off, most treatment was pulsed treatment anyway, and that he was now seeing the time frame for full treatment to be more like 4-5 years, 2-3 years pulsed and another 2 continuous treatment. He has not found ways yet to speed this process up given the toxic nature of the organism involved.
Why might there be a place of diminishing returns for some of us on a pulsed treatment? Some observations & hypotheses:
a) Cryptic load does is not benign just because it is low metabolizing-
Cryptic Cpn have been described as "non-metabolizing" with the implication that in this state they are causing no further harm, and one can then kill them at one's leisure, so to speak, with flagyl pulses. But Cryptic Cpn is not harmless in my view.
1. First, it induces essentially "immortalized host cells." This means that those cells don't go through apoptosis, and don't get replaced with normal, healthy cells. Without this, the host cell's function is impaired and the symptoms for which they are responsible can't actually recover.
2. Additionally, I'm convinced that Cryptic Cpn is harmful. Although low metabolizing, it is not benign. It's effect continues toxic and inflammatory reactions, and degradation of tissue over time. This is completely my own speculation, as there is so little scientific data on this form of the organism. But if the bacterial envelopes of dead Cpn can cause inflammation for up to two weeks after kill (see our research section), than Cryptic Cpn could also do so by mere presence. It's just slower than an active infection, but constant. There is no research literature on this that I've found so far.
The idea is based more on personal observation and the thought that the big endotoxini hit many of us get on pulses could be going on, at lower grade, just from bacterial presence in the host cell. Remember, although Cryptic Cpn is in a low metabolizing state, it is still functioning to regulate host cell genesi for apoptosis. This means it's secreting something to do this. Could other things be maintaining low grade inflammation from Cryptic infected cells?
b) Rate of creating "Immortalized Cells" could exceed rate of Cryptic kill- Now, the whole idea with using the protein synthase inhibitors (like doxyi and azith) to block replication is to stop disease progression and create the "stringent" condition which drives Cpn RB's into Cryptic formi to survive. It seems obvious from this that the Cryptic load must build up (increase) over time with antibacterial and anti-replicant agents.
This means that over long pulsed treatment starting with a high bacterial loadi, you are creating more and more cryptic, immortalized cells. For different patients these curve ratios would be different. With many, the rate of creating immortalized cryptic loaded cells would be such that pulsing over time diminishes them. If EBi's are also cleared, than fewer and fewer RB's are created, and thus fewer Cryptic cells. Episodic pulses would be enough to winnow down the Cryptic load.
But, If the load of Cpn has been high to start with, the curve of creating Cryptic cells could be higher than the curve of killing these cells in a spaced out, pulsed regimen.
A poor but illustrative schematic:
c) TIssue saturation- The pharmacokinetics of drugs is complex.
• Standard doses reach blood saturation levels, but local tissues and cells have mechanisms such as efflux pumps which work against this.
• Some tissues are not well supplied with blood flow, and so concentrations may vary in different organs and tissues.
• Then there is the time factor: how long must a cryptic bacteria within a host cell be exposed to the agent to reach kill? How many of the Cpn must perish in a multiply infected cell to induce apoptosis? Paron discussed this a while ago on-site, hypothesizing why certain pulses can suddenly become more difficult: it takes a couple pulses for a particular host cell to reach the tipping point for apoptosis.
So, for some cases, Dr. Stratton suspects this is so in many cases of CFS or FMSi particularly, pulsed treatment of flagyl/tinidazole may not be adequate to clear the high and disseminated Cpn load: either to clear the Cryptic load at the rate which it is accumulating from protein synthase inhibitors; or to reach saturation levels long enough for the penetration needed to clear it adequately from certain tissues. Treatment may require much longer constant blood saturation levels, or build up of drug levels in certain tissues to reach this tipping point. This is a matter of pharmacokinetics, i.e.. that it might require reaching tissue saturation of the flagyl/tinidazole for a longer period of time to be able to get to certain tissues (e.g.. poor circulation tissues like joints and extremities), or to overcome cellular efflux pumps, or to simply be at tissue saturation long enough to tip the balance for certain cpn infected host cells.
If you look at Dr. Stratton's case reports (in the Handbook) you'll see that treatment appeared relatively short--- for those who were able to stay with it. 6-8 months. What we forget, looking at those figures, is that this was on continuous treatment, not pulsed. Now, how on earth he got patients that sick to do continuous treatment? It is probably a testimony to his persuasive powers as a physician, plus his patients bull headed stubbornness. I can only speculate. Now there's a doctor-patient relationship! No doc could have gotten me to do this at the beginning of this CAP treatment. I could not even think about doing such a thing two years ago, even 6 months ago. Without pulsed treatment I could not have tolerated CAP treatment at all. So pulsed treatment is the essential starting point no matter what.
But staying on pulsed treatment might explain why certain of my symptoms were not improving after a fairly long course of pulsed treatment, or even why a gradual worsening (this is my personal evidence that increased cryptic load is not benign). Now, don't everyone go rushing off on this. Lot's of good reasons for pulsed treatment, especially when the cells effected are vital such as liver, central nervous system, heart, and so on. You don't want too fast an apoptosis until the major load is gone.
N of 1 experiment-
So, having been on the pulsed CAP for two years, I thought I might be ready to switch to continuous treatment with my doctor's consent. I didn't start by simply continuing a full pulse even though I was tolerating a twice a day for 7 days pulse. After all, being on a continuous dose is likely to build up effects over time, so one should take time getting into it-- if one is not an idiot, and I try to be smart from time to time. For a change I actually got smart about it. Yes, yes, amazed looks all around. I actually started February 13th, 2007 with one tinidazole a day until I felt comfortable tolerating that (little reaction). This took about two weeks. Then I added the second dose per day. I was prepared to do this on alternating days at first, but found it generally manageable to do twice a day. I have been on this since then, with one week where, for travel and business reasons, I decided to drop back to one tini per day. Interestingly, I had a distinct improvement on this one per day after 4-5 weeks of twice a day, suggesting that this continuous treatment was getting at some symptoms I had reached diminishing returns on with pulsed treatment.
Here are a few specific observations of this 6-7 week trial. I compare my responses to the CAP during early pulsed treatment, pulsed treatment over time, and the current continuous treatment regime:
Joints-
Early pulses- I would get significant inflammation and pain in certain joints sacro-iliac & hip, knees and wrists, ankles and feet.
Pulses Over time- Sacroiliac pain virtually disappeared, knee and ankle pain became diminished, usually flared for first couple days on pulse, then diminished.
Over time I no longer had significant joint aching during most pulses, except for mild knee and ankle pain and some sacral twinges
Continuous pulse- Joint aching and inflammation flared in knees, wrists & hands, and cervical (C 4) areas. The sacroiliac pain returned, first flaring for a week or so on the left side which then diminished, and then flaring on the right. The right side pain (and sciatic nerve pain) is just starting to diminish.
Conclusion- continuous dosing was definitively increasing kill and getting much deeper into those joint tissues I had thought previously cleared. Continuous treatment actually appeared to activate inflammation and kill in one (cervical) area where I had not had significant symptoms in pulsed treatment.
Soft tissue (fibromyalgia) pain
Early pulses- Significant flares of pain in upper back and trapezius soft tissue, where much of my fibro pain was located.
Pulses over time- this gradually diminished. I no longer had this pain between pulses, and during pulses the flare was mild in these areas. I thought it was mostly cleared area of Cpn infection. These had been the most constant areas of pain pre-treatment.
Continuous pulse- pain has flared up gradually over course of continuous pulsing, with some days of very big pain/inflam flare up in these areas, and also days of improvement. As I've stayed on it, this locus has diminished so that I'm currently not getting this pain at all here.
Conclusions- Again, it seems that tissue saturation is getting to layers in this locus of Cpn infection that had been significantly affected by pulsed treatment, but more recently was almost imperceptibly being winnowed down by pulsing.
Cognitive fogging and energy-
One of my most stubborn and persistent symptoms. Dr. Stratton assured me years ago that this too would pass with Cpn treatment, but it has held on.
Early pulses- The whole CAP including pulses fogged me out more. I stubbornly gutted it out and used ADD meds to maintain adequate mental functioning. Pulses made it even worse. Improvement on these symptoms plateaued during last summer, but actually seemed to grow worse through the fall of 06.
Pulses over time- I'd reach a point day 3-5 of pulses where I'd get much clearer mentally and have surges of physical energy. These improvements would diminish between pulses.
Continuous pulse- These were initially worse on continuous treatment. Two weeks ago I went from 2 tini a day to 1 tini a day as I was teaching a major presentation and didn't want to fight the full dosing. I had more energy and mental clarity than I'd had for a long time, suggesting that the continuous treatment was doing some real good for this symptom, although it wasn't yet apparent full dose continuous treatment and the subsequent increased, temporary, toxin load.
Conclusions- Whether it's over-all lowering of bacterial load, and thus of porphyrins and cytokinesi, or that continuous treatment is getting into brain areas effected by Cpn, this seems to be reaching these more intractable symptoms.
Urinary Symptoms
Like the brain fog, these have been one of my earliest (pre CFS, most persistent and intractable symptoms.
Early pulses- I would get some flare of these symptoms during pulses.
Pulses over time- Again, flares during pulses, but no improvements between pulses. These symptoms had actually gotten worse by fall '06, suggesting to me that the build up of cryptic load was actually increasing symptoms. Of course, it could be that Cpn was simply not the problem here. It doesn't cause everything, does it?
Continuous treatment- Actually worsened these symptoms initially. What gives me hope about this is that during my week of single tini dose a day I had noticeable improvement in these symptoms for the first time! So if I hang with it, once the localized inflammation from die-off is cleared, I expect some improvement in urinary symptoms.
Conclusions- My guess is that continuous treatment is causing gradual kill of cryptic Cpn, initiating more inflammation in the urinary system and thus worsening symptoms, but is doing so by reaching tissue saturation levels I could not get with pulsed treatment. I would expect very gradual improvement of these symptoms over a number of months if this is true. We'll see.
Additional observations: There has been episodic flaring of "bad days" on continuous tini treatment. There is no pattern to this, but generally it seems about every two weeks I have really good days, and similar a difficult day with of inflammatory flares, brain fog, etc. Seems more cytokinei/endotoxin than porphyric.
Tentative hypotheses: suggestive that there is a build up of effect for certain cells, and that even in a constant saturation model, not all tissues hit kill effect at the same time-- perhaps not all tissues actually saturate, perhaps there is some tipping point (as Paron has suggested) for apoptosis-- killing enough Cpn in the cell before apoptosis occurs-- or perhaps for other metabolic reasons, such as improvement of immunei response, stress, etc.
Dr. Stratton's emerging views:
I'm presenting this in my blog rather than in the Handbook as I'd like to see more comments before editing this into the protocol recommendations.
Discussing this with Dr. Stratton while gathering information for the the CFS/FMS article, he noted the following:
• Pulsed therapy may be sufficient for a large number of patients, especially where Cpn load is lower or more in focal tissues.
• Pulsed therapy is the required actuality anyway even if one is gearing for eventual continuous treatment, as this is the only initial approach tolerable for most patients. He is very appreciative of Dr. Wheldon's perspicacity in developing this approach.
• Pulsed therapy is also required where tissue repair and replacement is slower, as with neurological tissues.
• He is not yet convinced that ending a pulsed therapy with intermittent is sufficient to clear all the Cpn from tissues, and would expect that after intermittent therapy is finished, patients may require periods of CAP treatment again if they notice any return of symptoms.
• Continuous therapy is probably required at some point for patients with higher load, or certain tissues infected, especially in CFS and FMS cases. If symptoms are still dragging after two years of pulsed treatment, then it's time to move to continuous treatment.
Dr. Stratton's description of CAP treatment is more like this: 1-2 years of pulsed treatment followed by 1-2 years of continuous treatment.
Schematically, It would look like this:
Compare this to the pulsed treatment approach:
I'll be interested in the ensuing discussion of this blog. Remember, this is an initial report... don't try this at home! The particular versions and timing of CAP treatment have always been individual. There is no "one size fits all." The information given here at www.cpnhelp.org and elsewhere is a starting point, but should not be limiting points for knowledgeable physicians and patients.
As for my own treatment, we shall see. I'm never satisfied with my own state of affairs and always push the limits. I like to think I'm tenacious, but "bull headed stubbornness" has also been applied by those who know me well. As a Taurus, I accept the title.
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Jim what a great blog.
Jim what a great blog. Your evaluation of your own situation is clear and well done, I marvel at the objective nature of your description. I am moving toward continuous treatment as well. I have had a dignosis of MSi since '91 Like a lot of people there were signs before then, but it got bad enough to reach diagnosis level that long, long time ago. It seems obvious to me that we cannot all be the same in response since this is a germ a and more time equals more penetration of bugs.
As for your idea that cryptic bugs are problematic I agree. IT is clar that the associated inflammatory factors are present in the cryptic forms in the research pages. Your idea as a graph about cryptic phases outstripping possible kill rates is interesting and probably accurate. I also have felt a plateau which is not
giving in to ongoing pulses, and like you had a big event last fall that stalled things on several levels (mine was hysterectomy). People who have read my blog have read about a person with improvements in energy and clarity but lacking in motor improvements (though potentially that is permanent).
I am considering the continuous phase as well and will watch your further blogs with intense interest. Thank you Jim for taking time to quantify and outline your current thinking so clarly,
blessings!
marie
On CAPi since Sept '05 for MS, RAi, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplementsi.
"Color out side the lines!"
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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Currently on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, back to pulses of flagyli winter '08 all supplementsi. "Color out side the lines
Nicely done, Jim. I plan on
Nicely done, Jim. I plan on printing this out for a friend who's on the fence about starting treatment. This is much easier to read and comprehend than medical studies.
I would agree on the relative curves requiring continuous treatment with flagyli. I realized my body was craving more flagyl this past month and I went for a ten-day pulse. This resulted in effects on balance, tinnitusi, barely perceptible left-side weakness, brain fog and a minor general 'awakening' of many of my initial MSi symptoms. I know, somehow, this is all good for me. (We truly need to listen to our bodies more.)
Stopping flagyl after ten days, the symptoms have subsided and I am now on the alert for improvement. I plan to do another ten day run in three weeks, then ask my doctor to up the flagyl dose to 'constant' for a year if I have good results. Killing this bug 'dead' is the goal, after all, and I won't settle for my 98% recovery when I can have it all.
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
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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
Wonderful blog, Jim!! I am
Thanks, Jim - that's a
Thanks, Jim - that's a very detailed and useful post. The only reason for pulsing metronidazolei is to make the reactions less onerous; continuous treatment is certainly the best, if it can be tolerated. The range of responses to treatment is vast. Some people seem to require years of intensive treatment; others need only a slight nudge to begin the process of removing organisms themselves. (If I recall correctly, one of the control patients in the Vanderbilt trial of treatment of relapsing-remitting MS managed to successfully clear the organism.) The variousness of this chronic infection is astonishing. Each individual seems to have his or her own manner of colluding with / tolerating / fighting this organism. The depth to which the infection infiltrates every bodily system is also unique to each person.
D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment, BP this a.m. 110 / 75]
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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]
Jim, I admire enormously
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Thanks for your comments.
Thanks for your comments. It's really important to note that moving from a pulse to continuous treatment is not just continuing a pulse ad infinitum. I would suggest starting one dose every other day for a couple weeks, then one dose per day, etc. The pharmacokinetics of a constant blood level are very different from a 5 day spike at full dose, and you don't want to get taken by surprise thinking, "Oh, my pulses are relatively easy, continuous treatment should be fine..." It is not the same animal.
I think that only doctors like David, CS, and Mike Powell who have seen lot's of real treatment cases can appreciate how various this organism and our individual reactions to it are from case to case. Part of starting cpnhelp was my interest in comparing across different illnesses, and across different persons. I suspect the individual differences may outweigh the disease differences, as David's observations have suggested. Imagine, a CFSi patient who had no CAPi reactions, just improvements. Against the rules! Which means I'm jealous!
Diana- I still can't fathom how you did that. Fixed sign is right! For most of us it takes quite a period of pulsed treatment to even contemplate.
CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMSi- Currently: 150mg INHi,
300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!___________________________________________________________
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Thanks Jim for your
Thanks Jim for your insights into Cpni and the CAPi. We might have a couple of bull headed people in this household that might add some information to your speculations. Ella and I are both Taureans, but likely to have a different Cpn load. We won't give up until we get rid of the bugs, but one of us might get there before the other.
I can anticipate that I will have to up the levels of flagyli at some time. I have had spectacular result in the hair department and some improvement in my sinus and asthmai. But not much noticeable change in my IBSi and peripheral neuropathy which are the more painful parts of my complaints.
I have also wondered about the coming and goings of symptoms, and the fact that the couple of good days a month occur in the middle of the 5 day pulse.
Michele: Wheldon CAP1st May 2006 for ailments including IBS, sinusitis, alopeciai, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Very interesting blog Jim.
Very interesting blog Jim. Thanks for putting this together.
Would it not also make sense to follow a period of continuous therapy with another period of intermittant therapy (at 2-3 month intervals), just to make sure all infection has indeed been resolved and no recurrence occurs (by making sure no reaction to intermittant therapy occurs)?
Congrats on starting continuous therapy, btw. I was hoping to be at that point after 1 year of pulse therapy, and was very much ready until adding 4000iu of Vit D3 at the end of the year. My just-completed 5th post Vit D3 addition pulse was still strong enough to make this unfeasible from a functioning standpoint at the moment, but I'm still hoping to be there at some point in the not too distant future.
I'm hoping also to bump up my Vit D3 intake a bit more before going to doing so as well since it seems to be a very efficient way to dramatically multiply the effectiveness of the CAPi agents for me at least. And it would also seem to me that Cpni's ability to prevent apoptosisi in parasitized cells plays a major role in continued infection so this is an area that likely needs to be addressed in a major way through Vit D3 as well.
I know Sarah was on Vit D3 before starting CAP. Were any others involved in the early protocol treatments also taking 4000iu+ of Vit D3, and could we draw any conclusions about its potential for clearing infection and possibly reducing treatment durations as well? Or is its use in treatment relatively new?
Thanks again Jim for adding this very informative blog. Keep us posted on your progress!
On Combined Antibiotic Protocol for Cpn in Rosaceai since 01/06
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On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07
Me? I just decided to take
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Perhaps that really was
Perhaps that really was quite a fortuitous bit of reading Sarah! Are you sure you got it from the "Best Bet Diet" rather than straight from the pages of Cosmo?
On Combined Antibiotic Protocol for Cpn in Rosaceai since 01/06
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On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07
Jim there is an interesting
Jim there is an interesting article about the use of nitroimidazoles in lyme by Dr Martin Atkinson-Barr, a British doctor who used to work for the company that made flagyli and studied the way it worked.
He adapted Barry Marshalls 'triple therapy' for H.pylori and devised a treatment for lyme disease because the borrelia bacterium with its different life stages is as tricky to eliminate as Cpni. The triple therapy is very similar to the CAPs used here and some of the findings and observations he reports seem to echo your own ........ he says
'It should not be thought that the cysts are a kind of vegetative spore, or seed. The cysts are active and produce toxins. On reversion to the spirochetal form each cyst gives rise to multiple spirochetes.'
The Atkinson-Barr CAP is still being used by lyme patients but unfortunately the website was taken down some time ago. This is a link to a thread on Lymenet with the whole article
http://flash.lymenet.org/ubb/Forum1/HTML/034008.html
it's a very worthwhile read but rather long so I'll just post here what he says to expect on taking continuous flagyl (though these reactions were seen on going straight to continuous treatment, not pulsing first)
What To Expect When Taking A Nitroimidazole
The Lyme patient's response to taking Flagyl, or similar, is rather complex. On the basis of talking with about 100 chronic Lyme patients who have taken Flagyl and closely observing three Lyme patients on Flagyl/tinidazole I think there is a general pattern.
Days 1-6 Mild worsening of symptoms - aches, pains and general malaise. There are often palpitations and some difficulty breathing.
Days 7-10 The honeymoon. Patients feel dramatically better, often with all pain gone, energy returns.
Days 11-21 Unfortunately the honeymoon does not last. While the joint and low back pain may go away, malaise and neurological problems come on with vengeance. Profound lack of energy and motivation.
Days 21-33 Depression. For no known reason deep, deep depression starts about now. It may lead to suicidal thoughts and be very stressful for family members. Being forewarned helps greatly so Lyme patients should warn all those around them before it happens. Depression typically lasts about 10 days. Some Lyme patients react badly to anti-depressants so there should probably be avoided.
Warning! Days 40-60. A number of patients have experienced shortness of breath and palpitations at about 6 weeks. These events may require an ER visit. This may be due to a sudden die off of the bacteria.
Days 34-60 Gradual improvement, especially in neurological status, manifest as "good days". Eventually the "good days" become seven days per week. Profound fatigue remains however and will not abate perhaps for six months. At 60-90 days there should be no symptoms other than fatigue. Time to take a vacation!
Elinor ..... from England on CAP, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
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Elinor ..... from England on CAPi, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
Really interesting report
Really interesting report Elinor, and I'm pleased I started on the pulsing version of the CAPi. No wonder a lot of people were not able to stick to the treatment.
What he says about peripheral neuropathy is interesting to me, since this is one of my symptoms. It certainly has not got worse since I started taking flagyli, and I think is is down to Cpni or other co-pathogens. This symptom came on gradually and involved a feeling of constriction in the circulatory system of my legs. I asked my doctor to check me for Diabetes and to check the circulation in my feet. There was no problem she could find. The fluctuation of the symptoms in my feet and legs match the level of pain in my gut. It is as if they are linked and towards day three of the pulse my pain subsides for a while, only to return when the flagyl levels reduce.
Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Elinor- Thanks for the
Elinor- Thanks for the quotes. I'm hoping my 2+ years of pulsing will prevent the pattern he describes, but I think he's observing the pattern of tissue penetration and "tipping points" for different borrealis infected tissues. Thank God for such persistent and observant pioneers. The work of the Brorson's on flagyli and tinii in borrealis was also encouraging to me when I first was learning about Cpni and Lyme's.
I would reiterate that Dr. Stratton said to me that for most patients a "pulsed therapy" a la his friend David Wheldoni's approach is the starting point for a year or two, and that for many this may be sufficient.
Michele- Dr. Powell uses additional B6 to counter peripheral neuropathy symptoms, you might try it and report back.
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi,
300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!___________________________________________________________
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Thanks for pointing this
"I would reiterate that Dr. Stratton said to me that for most patients a "pulsed therapy" a la his friend David Wheldoni's approach is the starting point for a year or two, and that for many this may be sufficient."
Many people seem to be under the impression that the two men are rivals rather than friends.Basic Supplementsi - Essentials
- Vitamin D3 - 4000 IU This is best gotten from pills not associated with any vitamin A.
- Omega 3 Essential Fatty Acids – 3 grams of EPA +DHA. This is best gotten from fish oil such as salmon oil (.3 grams EPA + DHA per 1 gram capsule). One tablespoon of cod liver oil is also an option but ensure that vitamin A content does not exceed 5000 IU. The addition of 1 tablespoon of flax oil can be of value because it contains alpha linolenic acid, a precursor to EPA and DHA.
- Calcium – 1000 to 1200 mg
- Magnesium – 500 to 600 mg
http://www.direct-ms.org/supplements.html___________________________________________________________
Thanks Jim, for B6 info,
Thanks Jim, for B6 info, unfortunately it has been one of my regular vits even before the CAPi, so won't be able to add much in the way of observation, unless it is to say that it might have been worse if I had not taken it. I'm pleased to say that the peripheral neuropathy is not worse than before I started. On the odd day it feels much better, but on the whole it is about the same. I've just finished pulse 16, I'm just about the complete my first year of CAP. So still only a juvenile in terms of treatment...
Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
With CAP I had rapid
With CAPi I had rapid improvement of blood pressure and irregular heart beat. (My heart would have spaz attacks, and I thought I might die.) After a year of pulsing CAP, I was actually becoming less able to pulse Flagyli due to uncontrollable vomiting after 3 pills. Without the Flagyl I would loose the ability to talk. Jim, this blog was timely to explain what might be going on. Thank you.
A month ago I had started taking one pill a day Flagyl continuously. Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgiai, interstitial cystitisi, sinus: minocycline, Zithromycin, Flagyl, Valtrex, D3
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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.
Excellent post Jim,
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
Wow, thanks for everýone`s
I'm thinking that one
Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Aiki- I want to say again
Aiki- I want to say again that the way into continuous treatment is not, repeat not to just continue a regular pulse indefinitely. The dynamics of being at tissue saturation over an extended period are different.
Give yourself normal recovery time between pulses, then start with, say a tablet every other day for a week (or two depending on reactions), then one per dayfor a week (or two depending on reactions), then two per day for a week (or two depending on reactions) as you get clear about your tolerance. As I say, this reaches different tissues as the saturation levels work up. If you have MSi especially, you are trying to work up so that you are not getting significant functional decrement. Rather, you are finding a continuous dosing in phases which will allow you to tolerate the amount of kill/replacement/reorganization level and still get along.
So the idea is not to pulse at full dose and recover, the idea is build up in such a way that you don't have to "recover" hence the lower dose starting point before moving on.
Ah yes, the alcohol thing. I've completely avoided it, then last night, since I had skipped a whole day of tinii, I had a dinner drink. Was awakened with nausea. Stupid. Probably need more than a day to be able to drink, so abstinence while I'm in this. There will be no Port in this storm.
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi,
300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!___________________________________________________________
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Jim, I seem to see an
Jim, I seem to see an improvement in your writing. I watch this ability as a general indicator of our cognitive health. ("No Port in this storm" is an exception, of course. Gad!)
Seriously, I believe that you can tell, after reading a few of someone's posts, how they're feeling by how they write. I'll read a post, and be thinking to myself, "What's going on with _____?" When I get to the end, I'll find out that they're in a pulse, or a setback, or something. I'm not talking about mood or subject matter, I mean the things from English Comp -- structure, flow, spelling, grammar, cohesiveness, concision, etc.
Anyway, I take this as further confirmation that you're getting well. How wonderful!
Back to the topic: one of the reasons given for choosing the pulsed protocol was that the CNSi needs time to recover, and so the pulsed protocol is especially well-suited to treating MSi.
A lot of people here are being treated for MS; is the continuous protocol appropriate for them? I know it's going to vary with individuals, but just as a rule of thumb? Should someone with MS stay on pulsed protocol until there was absolutely no change during or between a series of N pulses?
On the other hand, I think you're saying that with CFSi or FMA or RA, you might never reach that point. It sounds like with non-CNS loci of infection, you might get to the point where every pulse feels crummy, but you don't improve. Or, am I misunderstanding the post?
Often in the past (the post-pulse surveys, for instance), we've seen that MS vs. Everything Else is a big determinant of response to treatment -- is this the same? Can we talk about this without specifying the condition being treated?
Ron
On CAPi for CFS starting 01/06 (NE Ohio, USA)
Currently: doxyi & zithi -- continous; metronidazolei -- 5 days on, 7 days off.
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Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.
Get the research results you paid for: support Open Access
Jim, some great points
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98% well and going for 100! CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi Also EBVi and HHV6 My grateful thanks to all the CAP docs!!!
Ron- Very interesting
Ron- Very interesting comments on the quality of posts as diagnostic. Well, I hope it is indeed reflective! I did labor over this and over the CFSi article, so it does have the benefits of editing, or at least re-reading.
As to the appropriateness of disease and treatment:I'm not really medically qualified to answer. I can note that Dr. Stratton and Siram have treated MSi patients with a continuous protocol, as it wasn't until David Wheldoni's insight that the pulsed format was introduced. And, as I noted Dr. Stratton said that the pulsed protocol is essentially the format for everyone for a time, even if heading for a continuous approach eventually. But he did note that a number will be able to clear their symptoms on pulsed protocol then stay with intermittent for a while, or permanently as a preventative. It's completely clearing the EBi's which is the real trick. They are tiny, populous, and pervade so many tissues that they may be hard to erradicate completely, even if symptoms have cleared.
I don't think it's the disease that's the issue per se, but rather bacterial loadi and tissue penetration issues. If MS CAPi users reach a plateau after a couple years of pulsed treatment, or see diminishing returns from pulses they may wish to look into gearing up to continuous treatment with their medical advisors. But I suspect someone with MS would have to go about this "gearing up" more slowly and carefully than someone with, say, RA or CFS because of the sensitive loci of infection.
This is why I strongly warn against just continuing a pulse which is seemingly mild, ad infinitum. You can't really predict what staying at tissue saturation levels over time will do, and in MS this could result in unexpected apoptosisi and functional decrement. So one would likely want to start with a more graded approach (even in RA and CFS) to get a better sense over a month or two of how continuous treatment impacts you. As I noted above:
CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMSi- Currently: 150mg INHi,
300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!___________________________________________________________
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
re Alcohol +
re Alcohol + nitroimidazoles... An excellent history of tuberculosis, The white death by Thomas Dormandy MD PhD, asserts that alcohol is a serious risk factor for acquisition and/or progression (I forget which) of tuberculosis. While real knowledge comes from looking at the data yourself, Dormandy is a high quality source. The implication is that alcohol could be strongly immunotropic, so you need to think about how it fits (or not) into your treatment.
That said, there are a couple papers in pubmed questioning the interaction between alcohol and metronidazolei, including one literature review and one small human experiment. I haven't read them. I read the abstracts only. You might want to read the full texts and take the matter quite seriously, as at least one of the events interpreted as an alcohol-metronidazole interaction was a fatality. However, rightly or wrongly, I did not take the matter all that seriously and have since washed down my tinidazole with a few (or several) drinks on more than one occasion. That does not mean that everyone will be fine doing the same. Some drug side effects, including fatal ones, are very rare and are highly unlikely to be detected in a small trial.
Relevant PMIDs include 10676835, 12022894, 8947362, and more can be found under Related Articles.
CAP adoption is vital - I
CAPi adoption is vital - I am going to be a heretic and say for most people with MSi (pwMS) I would not recommend continuous bacteriocidal antibiotics. I suggest that we focus on getting pwMS onto the DW CAP protocol rather trying to eliminate CPn completely from our bodies.
Why .... ???
1 - The DW CAP is economically arguable for pwMS (MS is a life long condition with genetic involvement and DW CAP is low cost + low risk).
2 - Continuous bacteriocidal antibiotics will be problematic for the medical establishment to experiment with, let alone adopt. Stratton et al need to produce a lot more data before I use continuous bacteriocidal antibiotics. Why would I seek to eliminate all CPn from my delicate nervous tissue only to get re-infected by a snotty child ? (hope this translates).
3 - CPn is widespread in the community so re-infection is highly likely. An approach of continuous NACi with Dox/Rox/Met every 2-3 months is much more logical from a health economics point of view (after the initial 1 year programme).
Jim, I appreciate your wish to eliminate CPn completely from your body, hence your willingness to use pretty drastic continuous bacteriocidal antibiotics. However, I suggest we promote the one year initial programme of continuous NAC/Dox/Azith with pulses of Met. Then we have a greater chance of gaining widespread use of CAP. This will help more people to get their CPn infection under control (probably not eliminated). For me this is much better than perfect elimination of CPn in a few pioneering people with a very few sympathtic doctors. (I can't remember the exact quote but something like 'good being the opponent of perfection').
Mark
PS: Oxford has a very fancy monument to some heretics burnt at the stake.
Mark Walker - Oxford, England.
RRMSi since 91, Dx 97. CFSi from Jan03. DW Patient, Jan06. Started emp CAP (NAC, Dox, Rox) with Copaxone, Feb06. Met pulses from Jun 06. Pharma Consultant (worked til Jan 03).
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Mark Walker - Oxford, England.
RRMSi Nov 91, Dx 97. CFSi Jan03. Copaxone + continuous CAPi (NACi, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abxi from June 07 onwards.
Mark- your succinct
Mark- your succinct description gives me another chance to say: Yes, yes, yes! No heresy involved at all. I am in absolute agreement with your reasoning and your description. That's why I presented this in blog form not in the handbook, as these distinctions must be clarified so that clear clinical reasons for the different protocol versions can be presented.
But you misread my intentions. My main aim is not to rid my body completely of the organism, but to rid myself of the onerous symptoms. The continuous protocol should be available to anyone, including MS, who has reached diminishing returns from the safer, more tolerable, more economical DW pulsed protocol.
Isn't it difficult, in a room full of heretics, to generate a really good heretical plot! In addition, I can't resist the pun, Michele would probably say we are guilty of hairesy on this protocol!
Undogmatically yours,
Jim
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi,
300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!___________________________________________________________
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3