Cpnhelp.org - Chlamydia Pneumoniae Treatment

I'm not sure what data you are refering to, maybe someone else will know..

The numbers doing this treatment are small, especially compared to more conventional treatment for MSi.   Most of the people here MS or not who are doing the CAPi are in the process of getting better.   Only a couple could be said to have finished the treatment.   This is a slow process.   The benfits incurred have been a minimum of stopping deterioration, the best results have been a  marked improvement in EDSSi score from 7 to 2, and in between there are people who have made significant improvements to their conditions.

You really need to understand how Cpni affects the body before you will see the reasoning behind this treatment. To that effect you might like to visit:

http://www.davidwheldon.co.uk/ms-treatment.html 

and read the handbook, top of the page green tab.

There is a lot to assimilate, but as you may need to educate your doctor about this, it is essential that you understand the basic principles of the treatment. 

Michele (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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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

As I said in my blog, please don't see my report as typical. You have to consider how long I've had it as one of the major factors in rate of improvement. 

As far as I know, the tables indicate all the patients studied, and are explicit about dropouts from the protocol. But.. you should know that this was a more aggressive protocol than what most of us are doing here: working up to full, continuous treatment (rather than pulsed) over a couple months, then all the meds all the time. Frankly, I don't know how they kept them in compliance on such a grueling protocol, and Dr. Stratton said that it required intensive support from the physician to do this.

None of the things you are exploring are contradictory. Methylation problems are probably involved in CFSi/ME for some. Borrelia is difficult to find via microscopy, usually is found via complex PCRi blood testing (western blot). Personally, I'd want a confirmation via Western blot, and get tested for Cpni at the same time. Borrelia is treatable with the CAPi and many Lyme docs use the same combo of drugs. The high-dose regimens some Lyme doctors use can be hellacious if you also have Cpn, as Cpn generates secondary porphyriai which Borrelia does not.  

You might do a trial of NACi to see if you get any reactions. It should be innocuous unless you have a high load of Cpn EBi's. A reaction would give you some further data.  

CAP for Cpn 11/04. Dx: 25yrs CFS & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

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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

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Thanks very much for your speedy replies and helpful suggestions, Michele, Jim and Sarah.

Michele, I'm referring to the Mitchelle/Stratton patent pdf, table 11.

Sarah - do you know how reliable the test you refer to is? (Sorry you've probably talked about this a lot on this site already...)

Jim - good idea to try the NACi. Yes I appreciate that your own experience isn't typical. Thanks very much for sharing your good and not so good experiences.

On your point about whether the data in the tables includes all the patients on the CAPi, if it does, then it would seem that in 11 people with CFSi or FM, with treatment lasting between 5 and 10 months, 8 became asymptomatic, one had 75% improvement, one had more more strength, and only one was non-compliant. No-one who completed the treatment failed to benefit.

Presumably there are no follow up data, but even so this is incredible. I've never seen any ME/CFS treatment produce such good results in such a short time! Why hasn't more been made of this? Clearly there is no control group but why hasn't this published anywhere? (I am bit worried though, as the patent report doesn't clearly say that these data were from all the patients treated - it just says 'typical responses' - seems very vague for such an important issue.)

Best wishes

Jenny

 

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25 years ME/FMSi.

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"Why hasn't more been made of this?"

It is only my opinion, but while there are a number of factors that make it difficult for word of this treatment to get attention, I think economics has a lot to do with it.  Just look at the numbers for someone with M.S.: Copaxone costs about $20,500 a year ($56 a gram) and the patient is on it for life.  If you are a pharmaceutical company selling this - or a neurologist whose career is spent studying it - how do you feel about the guy who says that with $2,000 worth of antibioticsi, he can put an end to your revenue stream - or your career?  I believe the reality of the marketplace is that it is not possible for a drug company to sustain double-digit profit growth by providing "cures" for disease.  Instead, the recipe for a healthy stock price involves providing a "treatment" the patient must take for life. 

 

CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Second pulse metronidazolei 12/2007.

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CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Twelfth pulse metronidazolei & INHi completed 8/28/2008.

hello Jenny, i just called the Testing place Sarah recommended.  They charge £50 for the test (not bad I think), but you have to do it through your GP, though i don't see why a GP would refuse to recommend it.  However, as i understand, the test is not conclusive as CPNi is a difficult organism to find (and destroy).  I only started CAPi a couple of months ago, and didn't do any tests as the only one i heard of was in the region of £250, but had i known i could get a cheaper one i might have done so.  As others have said, trying NACi and seeing the reaction can also be a helpful indication.  good luck.

msi blackfoot

 

M.E./CFSi 20 years.  Wheldon Protocol - Started NAC and supplementsi Sept 2007, Doxyi daily 100mcg October 2007, Azithromycin Nov 2007.

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M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

I have to give a word of caution about "micropathology ltd" - their detection rate is next to zero. Ring them up and ask them - in the words of one of their employees who I spoke to "We find CPni very very very rarely". I wish they had told me this before they charged me £100 for a useless test. 

Personally I consider it highly unethical for them to be charging that amount of money for a test which clearly isn't working (according to their own figures).

CFSi since 2001. Infected CPn Jan 2006. Started CAPi March 2007.
Currently: 500mg Azithro MWF, 200mg doxyi every day. 4 Pulses done.

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Hunter: Don't think - experiment

Jenny you said.....' I've never seen any ME/CFSi treatment produce such good results in such a short time! Why hasn't more been made of this?'

Well I'm putting my hand up here to say that for me, with very severe ME/CFS, the CAPi has produced good results but not in a short time, it's taken more than 2 years to see good results but considering the length of time I've been ill that really isn't so bad, I could be on it for some time longer. 

After the first few months though I was so ill I had to stop treatment for a while, it made me feel so hellish that I almost wrote it off as yet another failure but eventually, after taking some other abxi for a few months I started again, still it took many months to start seeing improvements.   You could be one of the lucky ones and have no trouble, as you'll see from the stories on here everyone is different and reacts differently, however the ones who are very ill to start with often seem to struggle more in the beginning as so many systems are out of whack.

Are you a patient of AW?  I had a positive test from a lab he uses     www.medi-lab.co.uk         

Elinor ..... from England  on CAP, doxyi/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpni 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.

 This may say more about why this research wasn't followed up: http://www.cpnhelp.org/chlamydiapneumoniaechronicfatigue

The patents you are reading were done after the original research was done, but not able to be published. The patents were to assure that the full information and findings would be available to the public and so physicians could see the methodology and data for themselves.

Publishing, there's the rub. You don't know what a coup it was for Drs. Stratton and Wheldon to get their paper on Cpn and MS published, without it being quashed by certain bigwigs in the Chlamydiologist circles. The little world of Chlamydiologists, like all such places in the human scheme of egos and reputations, has it's own politics and according to some sources, some of the major players involved in journal peer review disagreed with the methodology used by the Vanderbilt team.

You see this later in a more active attempt to "replicate" and  disprove Sriram's study on Cpn in MS. They had their own methodology which was not the same as Sriram's, both in the PCRi primers used, and in the incorrect use of frozen rather than fresh tissue samples (the same erroneous method used to discount Balin's brilliant work in finding Cpn in Alzheimer patient brains-- he, like Sriram, used fresh tissue and found Cpn, whereas frozen samples did not. Both Balin and Sriram responded to the critical studies noting these and other methodological differences, but were ignored).

There is a British lab in our links page which has the right to use the Vanderbilt primers for Cpn testing, but you'll have to inquire as to whether they are actively testing. 

CAPi for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

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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

Great post Jim - learnt a lot from that.

On the subject of the British lab - micropathology ltd - my understanding from speaking to their employees (and from other patients who have spoken to them) is that their detection rate for CPni is virtually zero.

They may have the right to use the Vanderbilt primers, but whether they are doing so correctly is another issue. Something seems to be amiss.

CFSi since 2001. Infected CPn Jan 2006. Started CAPi March 2007.
Currently: 500mg Azithro MWF, 200mg doxyi every day. 4 Pulses done.

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Hunter: Don't think - experiment

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Thanks for all this useful info Jim. I suppose what I'm trying to say is that I really want to convince myself that there is some hard evidence that the CAPi works, and the table 11 data is tantalising. If only we were given more details and told more about the sample! (I have spent much of my career as a psychologist doing evaluation research, so I'm quite critical of methodologies.)

I completed an 8 week course of pen V, azith (only 125mg x3) and ivermectin (you'll know this Elinor, yes I'm with AW) a while ago and now I'm completely bedbound and feeling so ill I can often only lie and listen to the radio. (I might think this is good (die off) but I have these bad relapses anyway so I don't know if its the abxi.) But it's likely that if I start the CAP I'm likely to get much worse for a long time. This will mean I'll lose my job - I'm currently on sick leave - and will be unlikely to work again even if I eventually improve (I'm in my late 50s). So it's a big risk. 

If I could believe the evidence I think I might stand the course. I've read all the encouraging stories from the brave people on this site, and that's more grist to the mill as it were, but of course we don't really know how many people don't get any benefit as they probably don't post any more.

I'm sorry to sound sceptical, but hard evidence is such an important issue. If I start the CAP I think I might get some support from AW but I can't get to see him in person as he's hundreds of miles away. I have no support from any other doctor - my GP says there's nothing that can be done for ME. I'm rarely well enough to see him anyway.

Best wishes

Jenny 

 

 

 

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25 years ME/FMSi.

In the end it has got to be a risk versus benefit decision.   No guarantees.   I'm not sure what the prospects for your future health are, with ME; my experience is with MS, for us there was no question that we should give this treatment a go, as there was nothing else for Ella. 

Michele (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

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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

Hi Jenny, Louise here. Just took a look at your Dx. I too have likely had CFSi for at least 25 years. I found JimK's story somewhat like a mirror for me at least his explaination about always trudging uphill and acomplishing much by most peoples standards. Yet there was that always striving to figure out what to do to feel better, I have been on supplementsi of one sort or another since 1973. Much has been helpful that I have done over these past 25 years.

Currently I am not working at in any of my porfessional capacities since March 2005. Had the ceiling literally not caved in at my practice space of 15+ years I may still be punting along there it is hard to tell. I too am in my 50's and understand your concerns about loosing your employment.

I will skip lots of detail that I could add and focus back on CAP and what I see as possibly a way to adapt it for your needs. What it has done for me and what my expectations are. The only treatment mistake I have made so far (and it was not by my own design) was to start my first antibiotic Doxycycline at a kill level dose 200mg twice a day. I did this for 14 weeks and like you now did little productive activity, sometimes not getting dressed, not going out, eating mostly Healthy Choice TV dinners and breakfasts. Hind sight is great of course but I also know from years of this trudging through life on sheer will was not a better option. Sorry if I am rambling here. Giving you a sense of I know personally what it is to be fairly incapacitated by CFS and by agressive Abxi tx.

So what am I leading up to here. Not really sure but will continue anyway.

It seems hard for those of us with CFSish unrelenting fatigue and high bacterial loads to get up to speed with even the moderate approach to CAP that the Wheldon protocol proposes. And When we have the ability to sort through all the data overload (in a good way I am saying this) I find that the way recommended is to as much as you can and progress as you can.

If I were lying in your home as you are, for what this is worth, I would consider starting either with Roxithromycin 150 mg daily or Doxycycline 100 mg daily and get either one worked up to twice a day in a week or two.

Then hold that dosage for several months. Reason you will be stopping replication of many sensitive bacteria and with your response to the Abxi you have recently had it is likely that you may have bacteria.

This is all somewhat emperical of course. There are no gaurantees of course. After the first week or so at full dose you may begin to be up and about more and be able to get back to work doing little much else but work but since you know your job well you will manage.

In September I said to someone that if I had to be on ABX all of the rest of my life to get an improved quality of life I would do that. What is my alternative really? And I believe that in learning the science behind the way the abx work with the lifecycle of the CPni there is hope for much improved quality and return to my life. The key is in the moderation and slow turtle pace of CAP for CFS. Different than the CAP for very aggressive MS and other overwhelming neurological manifestations.

First you get a handle on the pathogen with one full dose of one antireplicative ABx.

My choice, only from my personal experience would be to start with Roxi by Aventis if you can get it. I say this because it is so easy on the stomach even when taken on an empty stomach. I take it first thing in am and mid afternoon or at least 30 minutes before supper with a 12 oz glass of water to promote absorption.

Doxy would be my second choice, because for me it needs to be taken with a full meal always one with fat, protein (not a dairy product) and carbohydrate to buffer my tender stomach that can react most violently. After saying that, I do continue to take my Doxy 100mg twice a day and I am at the 6 month mark.

Some of us CFS on CAP wait six months or more before starting pulses and we often start very very slowly so that those of us with jobs can keep them.

Eventually we get up to full moderation of the Wheldon Protocol, we have a bit more time to spare than those with devisating neurological diagnoses.

Hope this has been somewhat helpful. I can say that if you asked me 5 years ago I would be willing to be so involved with learning all I can about antibiotics and persistent bacterial infection I would say very, very, unlikely, given my progression to holistic healthcare. I feel much gratitute for this website, when I google chlamydia pneumoniae it was right up there at the top with solid information. Louise

 

 

CFS/ME. CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tinii Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.

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Louise-CFSi, CPN+/Bb+ Wheldon CAPi 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi, Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

Thanks very much Louise for your very detailed advice, I will certainly follow it if I go ahead with the CAPi. I've asked my doctor to look for chlamydia in my blood using his microscopy technique - not sure how reliable this is though.

I was interested in reading about people's experience with FIRi sauna - I bought a blanket last week and do feel better after using it, at least for an hour or so. Have also started nimodipine - had a brain haemorrhage 3 years ago and was given it for a month, during which time my ME symptoms improved.

Best wishes

Jenny

 

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25 years ME/FMSi.

 Jenny, if I had to hypothesize here, I think you started off with too strong of antibioticsi. this caused you more of a die off reaction than your body could handle.  I think you might find it more tolerable (and possibly could work) if you started with small dose of naci, work up to 2400mg a day, then slowly add doxyi at 100mg twice a day. then once you are tolerating that, very slowly introduce the azith. 

Mphs, TN. CFSi, hypoT, weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. 6/26/07- CPNi Titer 1:256 (normal 1:16); 6/27/07- NAC; 7/2/07- doxy 100, 2xday; 7/19/07-9/7/07- Biaxin. 9/8/07-azith 250 mg m/w/f. 10/18/07-1st flagyli pulse

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Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli, tinii<

Jenny- I'm a psychologist too, so I understand the methodology critique. Quite legit in evaluating large scale studies, but remember, this is about you, not an N group. There is really only one question in that regard: will it help you? No way to answer that question aside from an N=1 experiment.

From the sound of it, you don't have much to lose. 

On the professional note: I was able to work and maintain my practice all through the CAPi. If you read my Patient Story you'll know that it was seeing eventual disability looming in front of me that helped me find this. I slogged through, and used meds to support functioning. If you do the CAP gradually and carefully you will feel better (assuming it is the right thing for you) even with tough days. The pulses you can plan to manage your work.  

I'll throw a quick poll together and see if we can get some current data on the question of CAP in CFSi. We did a more complicated survey about a year ago, but it was so complicated that I've been unable to analyze the data. It's out of date by now for your purposes anyway.  

CAP for Cpni 11/04. Dx: 25yrs CFS & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

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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

Jenny, Though my diagnosis in Auust 2005 was MSi, I had become convinced in the past fifteen years that I had chronic fatigue.  My periodic extreme ebbs and flows of energy and ability and strength sure fit the disease presentation.

What I can tell you is my MS stopped dead in its tracks within ten to fourteen days of starting antibiotics.   My stamina and energy levels built up gradually over the next six months, to the point where I could function most days without a nap of an hour or two each day.

Twenty-six months into abxi treatment, I am doing more than I could have imagined at any time in the last thirty years!  I am no longer tired in the evenings (my friends used to joke about my social life, which did not exist, due to my inability to drag myself out in the evening). 

Today, I held a forty pound chandelier above my head with one hand while tugging items under it (to support it) with my other hand. Never would I have believed this possible two short years ago.  By the way, I was treated without testing, as I was so anxious to start, and it's obviously paid off in energy and stamina beyond expectation.  Good luck to you!

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

Jenny, if you decide to do this, just remember that there are no guarantees as to time line or the level of "discomfort" (hah! talk about euphemism) you will experience. My neurologist at Johns Hopkins took 3 months to consult with her colleagues before putting me on the CAPi in order to ensure that she would "first do no harm." I have now been doing this for about 9 months and I do not even try to use flagyli while working. It is clear that the CAP is working for me in that I have regained the ability to feel muscles I haven't felt in years.  But I work part-time and I would be lying if I did not say that there COULD be problems in dealing with work. My energy has never been so low in my life as in this past month (barring the flagyl pulses). I have always reacted very strongly to drugs (even caffeine) and also had just about any side effect possible. Jim however seems much heartier and Mack responded more quickly than I have. So you see, the reactions to CAP, on the way to wellness, are individual. 

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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.

Jenny,

Your posting had this:

"I completed an 8 week course of pen V, azith (only 125mg x3) and ivermectin (you'll know this Elinor, yes I'm with AW) a while ago and now I'm completely bedbound and feeling so ill I can often only lie and listen to the radio. (I might think this is good (die off) but I have these bad relapses anyway so I don't know if its the abxiii.)"

During the time you were taking these antibitotics were you doing anything specific to deal with the effects of die-off?  I had taken antibiotics many times in the past without any kind of ill effect so when I first started the CAPi, I was pretty cavalier about doing anything to treat for endotoxinsi, secondary prophyria and lipopolysaccharides and I ended up in a Chicago emergency room because of it.  It made me a true believer in the need to take more than just the antibiotics seriously.  The Handbook and the Vanderbilt protocoli both discuss the things that can be done to deal with these side-effects.  If you have been laid out by die-off, then treating your current die-off may be enough to get you back on your feet.   And if it does get you back on your feet, then you'll know how to deal with die-off in the future so that if you start a CAP (for either CPn or Lyme) it probably won't hit you so hard that it keeps you from working.   I've got M.S. not CFSi/ME, so I don't experience the fatigue that you do, but I can say that in the four months that I have been doing the CAP (once I got serious about the anti-porphyriai measures), I have lost more time from the job getting my cars repaired than I have to the effects of the antibiotics. 

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zith (3 x week). Second pulse metronidazolei 12/2007.

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CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Twelfth pulse metronidazolei & INHi completed 8/28/2008.

Thanks for all these very helpful comments. On the question of dealing with die off, I was only doing epsom salts baths, 3 litres of water, and 6 grams vit 6. I didn't take cholestyramine as I'd tried that for 3 weeks before during a bad patch and it had no effect.

If I was really convinced I was experiencing die off while on these abxi, I'd be happy. But I had felt as bad at this a year ago while on no treatment at all. It's so hard to judge the effect of any treatment as the normal course of my illness is one of exacerbation and improvement and completely unpredictable. Exacerbations happen over hours, days and months, and I've never been able to link them to anything I'm doing or taking.

Also, I finished the abxi 10 days ago, and I'm not feeling any better. Can die off continue after abx are stopped?

Jenny

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25 years ME/FMSi.

Just my personal understanding here as a disclaimer first.  Eight weeks of treatment on the two combined antibiotics from my observation of folks in discussion here around their experiences on the Wheldon Protocol seems to be a point in time where die-off begins to happen from the antireplicant type of abxi that are part of the early program.  And it begins to happen in a more natural way as the cells that have been suspended in animation so to speak by first the CPni and then the antirepicant abxi begin to die off as the body naturally does periodically in the normal course of cell metabolism and life.

And I personally believe from my understanding that yes die off could continue after the you stop taking your medications.  I am wondering how much Pen V you were taking just as a matter of interest.  And the Ivermectin has been mentioned by some here and seems to be strong medicine in itself as well. And then it may take several weeks for you body to get rid of the dead bodies of the bacteria to say it simply and then it takes the bodies cells that have been killed in the process some time (weeks maybe 3 -4 ) to fully repair themselves.  And we don't really know which sites and organs in any one persons body, these pathogens have been living and each one of us is different in that regard. 

Hope that helps Jenny.  And I am ready to stand corrected by anyone who sees this more clearly than I.

Louise

CFSi/ME.  CPn posititve, Bb positive. Started CAPi 6/24/07 Doxy & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.

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Louise-CFSi, CPN+/Bb+ Wheldon CAPi 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi, Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

Thanks Louise, that's very helpful. I was taking 1gm of pen V four times a day. As for the ivermectin, it was 3 doses over a period of 2 weeks, but I didn't feel any better or worse after each dose.

Best wishes

Jenny

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25 years ME/FMSi.

Jenny, Just a quick check in my drug reference guide (professional).  In this particular reference under Penicillin V potassium,  under indications and dosages it varies according to the systemic bacterial infectionsi.

Looking under adult  for treatment of Lyme Disease erethema Chronica Migrans (which would be an acute case of fresh Lyme infestation) the doage suggested by mouth (po) is 500mg four times a day (q.i.d.) to total 1 Gm per day.

It sure looks like in taking 4 Gm total per day, that dosage would fall in a range that would be a frank outright Kill dosage and from my experience with another abxi in the kill dosage range along with the smaller dose of azythro that you were taking ( less that this particular CAPi) the two together or even just the first would have knocked my sox of as well, in my humble opinion.   In the end this could serve you, I am not criticizing your medical management just getting some clarity on the impact of your treatment on your situation.    I would not, knowing what I do now for myself and I am positve on lab tests for both  Lyme and CPni, expect to be able to sort out the effect of the ivermectin while undergoing all this die off. 

For me a change to the more moderate Wheldon protocol fo my Lyme and my CPn is the way for my system to be able to tolerate an ABXi protocol that will server both  chronic infections.

I must be off now and will be away to a family event for most of the weekend.  Keep reading the handbook and the stories.  They need not match us exactly, they bring the glimmer of Hope at least they did for me and I will be up to a lot of dancing this weekend even if I do overdo a little. 

My best to you,

Louise  

CFSi/ME.  CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.

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Louise-CFSi, CPN+/Bb+ Wheldon CAPi 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi, Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

Jenny- I know what you mean about not having a "better" baseline to compare your currently crappy state to.

Yes, affects of die-off can continue for weeks. The Penicillani you took, in addition to it's affect on other microbes, also kills chlamydial EBi's, and at that dosage would have killed a lot of them. A paper in our research section shows that the protien envelopes from dead Cpni can cause inflammatory reactions for up to two weeks in the lab. Then there is the inflammatory activity which is part of your own immunei system's clean up routine.  

Cholestyramine would not be helpful because killing EB's (the extracellular form) doesn't release any porphyrins, only endotoxinsi (hence why Vit C might be helpful) and causes inflammationi and pain (hence Epsom salt baths being helpful). Porphyrins are only produced as a result of the intracellulari parasitization by Cpn, and you only get a big dump of porphyrins which have accumulated in the cells when you kill these intracellular forms such as RB's or cryptic Cpn. That takes drugs like doxyi, roxyi, azith, flagyli and so on. Penicillan is not active against these forms of Cpn. 

People have die-off on beginning a course of antichlamydials any time between a couple days to weeks. My first course of tetracycline slammed me in 4 days-- well, I was naively on full dose and tetracycline is one of the strongest antichlamydials (just doesn't penetrate the nervous system well, so not good for MS). Some people do seem to need a couple weeks before the "tipping point." 

CAPi for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxy, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

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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

I've seen a couple of sources saying that penicillin does have an effect on chlamydial RBs. Here's one such passage:

Although the existence of a peptidoglycan layer in Chlamydia is now suggested by the genesi, it is puzzling that its presence should have remained undetected, especially given the inhibitory effect of penicillin on chlamydial growth (Moulder, 1993). This paradox, known as the chlamydial anomaly, is currently being debated in the light of the genomic information. Trace amounts of muramic acid have been detected in only one study involving purified EB of C. trachomatis (Su et al., 1985). Other previous failed attempts to detect pepti- doglycan constituents have all used purified EB, and only one attempt was made to specifically find pepti- doglycan in RB (Barbour et al., 1982). This raises the possibility that the peptidoglycan is specifically degraded during differentiation of RB into EB by amidases, whose genes are present in the genome (Chopra et al., 1998). This hypothesis is consistent with the marked volume reduction during RB to EB differentiation and the presumed lack of structural requirement for pepti- doglycan in EB (Hatch, 1996).

That's from the article Closing in on Chlamydia and its intracellular bag of tricks, by Patrik M. Bavoil, Ru-ching Hsia and David M. Ojcius. (Peptidoglycan is a usual component of bacterial cell walls, and is the substance penicillin acts to inhibit the synthesis of.)

Here's another passage:

A number of studies have analyzed antimicrobial agents as mediators of persistent chlamydial development. Treatment with penicillin has no effect on initial differentiation of the infecting EB to the RB but prevents the process of binary fission, inducing the development of enlarged, morphologically abnormal chlamydial forms with a block in the production of progeny EBs (67). These aberrant forms have been found in both C. psittaci- and C. trachomatis-infected cultures treated with penicillin (3, 21, 24, 49, 59, 67). Ultrastructural analysis reveals that the RB forms become progressively larger with continued culture in the presence of the antibiotic, with masses of membranes forming outside and inside the swollen RBs (67). Removal of penicillin from the extracellular culture medium results in extensive budding and internal subdivision of the aberrant chlamydial forms, producing typical RBs (67) with maturation to infectious EBs (30).

That's from this article. Now none of the above mentions C. pneumoniae, specifically, so it's possible that it's an exception.

According to this article by Gieffers et al, penicillin G is not very effective against the strains of Cpni they tested -- but it does have some effect:

Penicillin G did not completely inhibit inclusion formation at the maximum concentration used. However, an antimicrobial influence resulting in morphologically aberrant IFU and weaker staining was observed at penicillin G concentrations of >0.5 μg/ml.

It certainly doesn't sound as if penicillin should be a recommended antibiotic against Cpn RBs, but it seems hard to completely rule out an effect from it.

Norman- These do indeed throw more complexity into our assumptions. Your last statement sums it up well for me, "It certainly doesn't sound as if penicillin should be a recommended antibiotic against Cpni RBs, but it seems hard to completely rule out an effect from it."

I'm basing my statements completely on the Vanderbilt findings where penicilan was found to be minimally effective in reducing RB signal using their tests, but my knowledge of other work is admittedly limited. Thanks for the added info. It would be interesting to have a talk with Dr. Stratton about this and get a finer differentiation. 

CAPi for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

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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

There is the question of how much Borrelia might have been killed off by the Pennicillin V that Jenny took.  It is specific for borellia according to source that I quoted, and there could be as a result the production of producing endotoxinsi or remains of the borellia with an increasing general malaise etc. 

Perhaps the cholystyramine could take the edge of those lipophillic substances?  Therefore a potential improvement as a general perception of state of well being regardless of the affect of this particular form of Pennicillin V on EBi CPni.

Louise

CFSi/ME.  CPn posititve, Bb positive. Started CAPi 6/24/07 Doxy & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.

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Louise-CFSi, CPN+/Bb+ Wheldon CAPi 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi, Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

Welcome Jenny,

I will keep this short...had a sleep study last night & there wasn't a whole bunch of sleeping going on even with all the meds I take!

I had to step back from my highly technical career last April-06 at a time I was sick & should not have even put in 12 work hours a week.

At that time, I had just been to a seminar with Dr. Kenny DeMeilier, Belgium who is a specialist in ME.  A very important fact came to light that day, something very important, that NO ONE had ever mentioned to me before, YOU CAN DIE FROM THIS ILLNESS when people 19 yrs of age are all over the world.

Well, things became alot clearer then & thankfully God led me to this site in April of this year.  Overall, I am already feeling better, less pain!  This does make the days when I get slammed a little harder perhaps, but hey!  This beats the alternative of dying slowly only to watch the birds in the MayDay tree outside my bedroom window while I wait.

I follow the CAPi & supplement recommendatoins faithfully.  I now know the signs, the odd symptom creeps in every so often causing some alarm.  cooler heads prevail & I move forward.  I am not looking back, even if this treatment only serves to make me as well as I have attained to date; it is worth it.  spiralling uncontrollably downward is not an option for this gal just yet.

Blessings.

btw, what is AW?

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 1.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 12-3-07 4th pulse 1 X 375 mg 3day

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08