Feeling no better

I have been on the capi for about 14 months now and am still not noticing any getting better.  I am depressed most of the time (on antidepressants for years), still just weary, too weak to do anything physical most of the time, no energy, etc. 

Still a lot of yeast (taking all the stuff for it) plus 1 Diflucan a day plus Kefir (like yogurt, plus acidophulus pills, etc.)  I am on Valtrex for Epstein Barr and hhv-6 and am thinking about asking for Valcyte.  Doc doesn't like to use it but just maybe if I can feel better from those things I might do better on the cap.  Or should I not take the cap while taking the Valcyte? 

I am not having constant sinus infectionsi but the antibioticsi keep it in check but I still have problems with the fungal sinus infection caused by the antibiotics.  Vitamin C powder 10 grams a day when I first get a sore throat really knocks it out thankfully.  I did get Tindamax to replace the Flagyli but haven't tried it yet.  Haven't done a pulse in 2 months because the last time with Flagyl I got so depressed I was almost suicidal.  I'm going to try 1 Tindamax a day instead of 2 and see if I can tolerate it for a few days.  Anyway, just wanted to vent.  I know you all understand. 

Comments

Paul, You state you were

Paul, You state you were involved with the lab. In what capacity?

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

Mac             

Mac             

Paul has provided a partial answer at the end of this thread...

http://www.cpnhelp.org/with_reluctance<

but I don't think it's as complete as you and I would prefer.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Hi John, I do not recall

Hi John,

I do not recall saying there was a paper, only a study. I did accidentally misstate the time frame as it is a little nebulous with patients starting as they were recruited. It would probably be closer to 3 than 2 years though.

Metronidazole is bactericidal to many anaerobic bacteria. However I am not sure if Chlamydia is anaerobic. It does exchange ATP from the host cell for ADP in the cryptic state which I think is unique to chlamydia. That is not to say their are no processes involved that might be effected by nitroimidazoles though.

Norman, depriving Cpni of energy via inducing it to use ATP pumping out toxins might not be the best way to kill it. However I do not question the lab results or the in vivo results. I was involved with the lab when Dr. Mitchell and Dr. Stratton did this work and I believe that their in vitro results were correct.

However if this is the mechanism of action, one might suspect there would be additional unwanted side effects that might not be an issue for cell lines. For example although you did produce an interesting paper a while ago suggesting that Cpn make HP-60 in both the RB and CB state, I have seen papers that suggest Cpn produce more HSPi-60 in the cryptic state. Also this would tend to deprive the host of energy, more dramatically in infected cells. And by depriving infected cells of ATP for prolonged periods of time, the chance that the cell would be making hemei and that process would fail from lack of ATP increases and could lead to secondary porphyria.

- Paul

Still waiting to hear of

Still waiting to hear of your microbiological qualifications, Paul, by which you speak so confidently. And still waiting to read your papers.

 

"It is notable that the combination of zithromax, rifampin, and metronidazolei in a controlled study over a two year period did not work." And still waiting for this reference.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

DW             

DW               

It's clear to me and any logical person who knows your qualifications that you are the expert in the conversation.  The fact that Paul didn't come forth with the paper he is claiming to cite in the first place, completely invalidates the position he's taken and anyone who reads about it the claim he's making should know that immediately.

My own doctor, an M.D. who's practice is in Infectious Disease, also mentioned that Metronidazolei is bacteriostatic.  It's corroborating claims that completely convinced me, let alone reading about the drug itself.

Further corroborating evidence is listed and written about all over PubMed, where research has been done countless times, proving the fact that Metronidazole is bacteriocidal to anaerobic bacteria, such as the CB stage of Cpni.  So in my mind there is no question about it and there should be no question in any other patient's mind, especially those who are reading the comments of a non-medical "expert" on the subject when contrasted against someone who is thoroughly qualified to speak authoritatively about it such as yourself.

I am continuing with treatment and hope to be done in the near future.  Many thanks for giving me the information you have and a reason to think that maybe things can be different from the abyss that my neuroligist effectively cast me into.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

There can still be questions

There can still be questions about whether the cryptic stage of Cpni is anaerobic. The evidence that DW and Stratton listed in their letter is suggestive that it is, but is nowhere near proof. More conclusive, and more directly to the point, are the experiments Stratton and coworkers did in eradicating Cpn from tissue cultures and from laboratory animals using metronidazolei. Whether those worked via anaerobic activation of metronidazole, by efflux pumps, or by some third mechanism nobody has yet imagined, is a secondary question; the main thing is that they worked.

Those experiments could still be doubted -- it's common for scientists not to put full trust in results until they've been confirmed by other laboratories, since scientific experiments can be tricky, and errors occur -- but in this case, the Vanderbilt lab has sufficiently proven their superiority over other labs in the field that even if another lab found the opposite, I would still tend to trust them. (I have in mind the blinded study searching cerebrospinal fluid for Cpn, by means of PCRi, in which the Vanderbilt lab, without knowing who was who, found Cpn in MSi patients but not in healthy controls, while other labs found none at all in either patients or controls.)

Hi Norman, I think it only

Hi Norman,

I think it only kills via the efflux mechanism when used in combination with a bacteriocidal drug. But if it does what Dr. Stratton and I think it does and uses energy through metabolically expensive pumps, then that would presumably push it into the cryptic phase when used alone. If that is the case then it would not be replicating and that would make metronidazolei bacteriostatic. So I concede the point and will endeavor to choose my terminology more carefully in the future ;)

That was not the study I was referring to. I will email you as this has not yet been published.

- Paul

Oh, please. That's not

Oh, please. That's not conceding the point. Conceding the point would be to say that metronidazolei is bacteriocidal, not bacteriostatic.

You seem to me to be trying to have it both ways: on one hand arguing that Stratton's experiments which found that metronidazole kills Cpni (in the context of treatment with other antibioticsi which, alone, would only force it into the cryptic state and not kill it) may have achieved their results solely via efflux pumps, yet on the other hand arguing that killing via efflux pumps is a weak mechanism of action, and that thus patients should search for something stronger. That combination of claims only makes sense if the results of the experiments were themselves weak in some way. Now, I can't say they weren't weak. Stratton has never published the numbers, as far as I know. So I can't, for instance, look at the concentrations of metronidazole he used, and compare them to the concentrations achievable in humans. On the other hand, you're not saying they were weak, and you are saying that you're not contradicting Stratton. I might be receptive to that argument that the results were weak, if it were made (and it might be made without directly contradicting Stratton), but I'm not just going to assume that argument is true when it hasn't been made. If the results of the experiments were strong, then either killing via efflux pumps is not a weak method of killing, or metronidazole kills in some other way besides efflux pumps.

As for the study, I am not the only one interested in this; I got a private message asking me to share it if you emailed me. That person was under the impression that there was a paper describing the study that I would be receiving; I am obliged to tell him, and might as well say here for others who might likewise be interested, that by your emailed account, the study is not yet "completely analyzed", let alone written up.

LynnP - I think, though

LynnP - I think, though you're having slower improvement than you'd like, the sinus improvement is a big deal.

One of the early improvements for me was waking without a stuffy nose for the first time in decades, losing that drainage down the throat (yuck) and, within six months, the loss of my three or four sinus infectionsi a year.

My mom has had chronic sinus infections all her life and I was headed in that (worsening) direction, but that was stopped in its tracks by the protocol. Just hang in there.

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

Hi Sarah, Incidentally I

Hi Sarah,

Incidentally I took rifampicin, roxithromycin and metronidazolei for six months at Stratton's suggestion and prescribed by David and it definitely worked

I do not doubt that this combination worked for you. Is that the only thing you took in that period? From what I read on this board it seems that most of the people are taking significant amounts of a wide variety of supplementsi that may play a role. For example people use vitamin C, caffeine, glucose, pyruvate, lauric acid, ect in significant doses. IMOi these may play a role in treatment, not just helping with side effects as is commonly thought.

- Paul

Paul, Could you not start a

Paul, Could you not start a new topic for this discourse?

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

Paul: don't let us use

Paul: don't let us use another person's blog to argue.

However, please quote the reference for "It is notable that the combination of zithromax, rifampin, and metronidazolei in a controlled study over a two year period did not work."

Let us see this reference in print.

Let's see the pennies on the board. Let's see your published work. You are always rather shy of this, I've noticed. Don't be shy. Let's see it. Let us see your medical and scientific qualifications, as I asked earlier, apparently without response. Give your arguments against our letter. Bring it all out into the open. Argue it term by term in this agora. I shall admire you if you can.

 DW

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

So sorry Lynn,But Paul said

So sorry Lynn,

But Paul said above:

"It is notable that the combination of zithromax, rifampin, and metronidazolei in a controlled study over a two year period did not work. It is hard to argue that this should not have worked if metronidazole is bacteriocidal in the manner you suggest. Similar regimens do seem to work when other adjuvants are thrown in so I think you should really start wrapping your head around this instead of accusing people like Dr. Stratton and I of "falsifying demonstrated science"."

It must be said that David has never accused Chuck Strattoni of falsifying anything.

Incidentally I took rifampicin, roxithromycin and metronidazole for six months at Stratton's suggestion and prescribed by David and it definitely worked.................Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I got curious about a

I got curious about a sentence in the paper that Sarah graciously provided:
If C. pneumoniae has the ability to utilize an anaerobic pathway it should have the potential to fabricate ferredoxin or a ferredoxin-like protein, and, indeed, chlamydiae do possess this ability [23].
Neither it nor its reference says explicitly that Cpni in particular has a ferredoxin, which seems a bit weak. I wondered if I could do this sort of search myself, since a lot of gene data is online. It turned out to be ridiculously easy: just go to NCBI Entrez Gene<, and type in "chlamydia pneumoniae ferredoxin": you get a list< of 21 gene sequences from various subspecies of C. pneumoniae which researchers have labeled as being a ferredoxin, a putative ferredoxin, or a similar reductase enzyme. So although the sentence in the paper seems a bit weak, it could easily be made stronger: it could say that Cpn in particular has such an enzyme, as found by multiple researchers sequencing multiple strains. (This is important since it's the main enzyme that activates metronidazolei into its destructive free-radical form.)

Excellent find Norman!Very

Excellent find Norman!

Very good of you to find this and  bring it out for us to read and continue to make the point about metronidazolei.  Thank you for this!

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Thank you Sarah and

Thank you Sarah and DW.

 

Loulou

diagnosed MSi Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi 100 mg. 1BID. roxyi.150 mg.? BIDi,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNi),NACi, nystatin, major wheldon supplemrnts daily,

Thank you Sarah and

Thank you Sarah and DW.

 

Loulou

diagnosed MSi Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi 100 mg. 1BID. roxyi.150 mg.? BIDi,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNi),NACi, nystatin, major wheldon supplemrnts daily,

Hello Lynn, really would

Hello Lynn,

 really would just stick with what you are doing for now.  With some people an improvement takes longer, unfortunately, but at least you have your sinus issues under control, which is a big start....................Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hello John,I have put the

Hello John,

I have put the actual paper, unlinked, on my website for you to read................Sarah

http://www.avenues-of-sight.com/07-10-06-Antimicrobialtreatmentofmultiplesclerosis.pdf<

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thanks Sarah!I'll be reading

Thanks Sarah!

I'll be reading it in detail over the weekend.  I'm glad I wasn't having some sort of mental aberration and that what I thought I read before was true.  Many thanks!

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Paul: where comes your

Paul: where comes your expertise? Where are your published papers?

Please let us know the authority on which you base your statements.

Chuck Strattoni and I have published on this. It is quite clear that metronidazolei is cidal to C. pneumoniae after the organism has been driven into an aberrant state by administration of protein synthesis inhibitors. Dr Stratton has demonstrated this in vitro and in vivo.

It seems clear to me that you are promoting a nebulous hypothesis by downrating and indeed falsifying demonstrated science. It is quite wrong to play upon the susceptibilities of ill people.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

David, Chuck Strattoni and I

David,

Chuck Strattoni and I have published on this. It is quite clear that metronidazolei is cidal to C. pneumoniae after the organism has been driven into an aberrant state by administration of protein synthesis inhibitors. Dr Stratton has demonstrated this in vitro and in vivo.

It seems clear to me that you are promoting a nebulous hypothesis by downrating and indeed falsifying demonstrated science. It is quite wrong to play upon the susceptibilities of ill people.

I talk to Dr. Stratton about this all the time. And I stated this as my opinion. However I would say Dr. Stratton is on the fence on this. I am certainly not attempting to discredit him in any way as the alternative mechanism of action, inducing chlamydial efflux pumps, is also his idea.

The truth of the matter is that metronidazole may be bacteriocidal, it may not be bacteriocidal but acts on chlamydial efflux pumps, or it may do both. I suspect it only acts on efflux pumps and Dr. Stratton thinks it may do both and I take it from your message you believe it is only bateriocidal. So we will all have to agree to disagree for now... hopefully without being so disagreeable though.

It is notable that the combination of zithromax, rifampin, and metronidazole in a controlled study over a two year period did not work. It is hard to argue that this should not have worked if metronidazole is bacteriocidal in the manner you suggest. Similar regimens do seem to work when other adjuvants are thrown in so I think you should really start wrapping your head around this instead of accusing people like Dr. Stratton and I of "falsifying demonstrated science".

One more thing. Do you honestly think that I would "play upon the susceptibilities of ill people"? Until you post an apology for your little tantrum, we cannot continue this discourse.

- Paul

If it kills bacteria by some

If it kills bacteria by some mechanism involving efflux pumps, that still counts as bacteriocidal! If you want to make claims about mechanism of action, make claims about mechanism of action. But saying that it isn't bacteriocidal to Cpni is saying that there is no mechanism of action by which it kills bacteria -- not via efflux pumps, nor by anything else. If that's not what you mean, then don't say it.

By the way, if you're referring to the Sriram et al study published in 2005, that used only rifampin and azithromycin, not metronidazolei.

Hi John, Metronidazole is

Hi John,

Metronidazole is bacteriocidal against some pathogens. It may be bacteriocidal against chlamydia as well although one would think this would have been shown in vitro by now if that were the case. I really do not think it is even bacteriostatic in the sense that we typically use that term as it does not inhibit Cpni by itself. IMHOi it is probably a useful adjuvanti but no better than many others and perhaps not as good as some.

- Paul

Hi Norman, I suppose it is

Hi Norman,

I suppose it is not inconclusive except that they did not test any of the thousands of other agents or even increased doses of the concurrent agents that may have had the same effect. I think that since metronidazolei has not been shown to be bacteriocidal and that its side effects mimic drugs that we think are being pumped out via chlamydia efflux pumps, its mechanism of action is simply inducing these pumps and thus depleting Cpni of ATP.

The anaerobic thing does sound interesting though as presumably heavily infected cells or areas of heavy infection would be depleted of both nutrients and oxygen.

- Paul

What Paul?? Everything I've

What Paul??

Everything I've read about Metronidazolei both here and elsewhere has stated it is bacertiocidal.  I've never heard it referred to as bacteriostatic.  I'd like to know where you heard otherwise?  That will be a revelation from my level of understanding.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Some interesting info about

Some interesting info about chlamydia and metronidazolei. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1993882/<

Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years

What's inconclusive about

What's inconclusive about that? The assertion was always of being bacteriocidal in the context of using other antibioticsi. It'd be nice to know the mechanism, too -- whether Cpni has an enzyme that activates metronidazolei, for instance -- but the overall effect is the most important thing.

By the way, one thing I ran into, in some paper about metronidazole, was a statement that human liver enzymes activate metronidazole. (That is, they turn it into its damaging free-radical form.) The paper went on to say, however, that the liver is oxygenated well enough that the activated form quickly decays back to plain non-activated metronidazole, by combining with oxygen. So the effectiveness of metronidazole in killing germs can depend not only on whether the germ has an enzyme that activates metronidazole, but also on how well oxygenated the infected area is. Metronidazole has traditionally been considered to only be of use in anaerobic infectionsi, and this may be partly why.

Hi Norman, I have talked to

Hi Norman,

I have talked to him quite a bit about this. Unfortunately there does not seem to be much data. If one goes back to the work he and Dr. Mitchell did years ago, it is inconclusive. I think it did not have any effect when used alone but was beneficial when used in conjunction with one or more antibiotics. My thought is that like several of the TB drugs it does not have any direct antimicrobial effect but helps when used in conjunction with bacteriostatic or bacteriocidal antibiotics.

- Paul

Hi Maria, It is great to

Hi Maria,

It is great to hear your daughter is doing so well. What dose of caffeine is she taking now? Is she only taking the caffeine with her flagyl pulse?

- Paul

Paul,My daughter takes

Paul,

My daughter takes caffeine every day with her antibioticsi even when she is not pulsing.  Generally, she takes 200mg everytime she takes an antibiotic.  So when she was pulsing last week, she took 200mg of caffeine with the first flagyli dose in the morning along with azithromycin if it was M, W or F, 200mg with the second flagyl dose along with the 200mg of doxyi (she takes both doxy pills at the same time) with lunch or dinner depending on the day (on school days she takes her doxy with dinner and on weekend at lunch) and the last flagyl of the day she took before bed without caffeine.  Right now she is not pulsing so she takes 200mg of caffeine with her doxy and 200mg of caffeine with the azithromycin on M, W and F. So some days she takes 200mg and some days she takes 400mg. Not sure if this is the right way to do it but it seems to be working for her.  At first. she seemed to have trouble taking more than 100mg of caffeine at a time but over the last month we have been able to up it to the current dosage and pattern with minimal side effects.

Right now she has a horrible cold but still not complaining about having a headache.  This is really amazing because  the chronic daily headache was the one thing that seemed to not be improving when everything else was getting better and now that too seems to be getting better.  I fully expecting her to wake up tomorrow with a horrible headache since I have dared to share her improvement....but I will enjoy this pain free time while it lasts!!

 Thanks Paul for all the information you have shared about caffeine and treatment.  I always read your posts with great interest.

Maria

Mother of a teenage daughter with cpni infection. Symptons include migraine, muscle aches, chronic fatigue and brain fog.  Currently taking 1800mg of NACi, 200mg doxycycline, 250mg azithromycin MWF, pulsing flagyli, armour 60mg, 100mg trazodone, iron supplem

Exactly. The crucial point

Exactly. The crucial point is that you are reacting to antibioticsi. You had a strong die-off reaction to metronidazol. You should stick to the treatment and be patient. I feel better after 21 months with the protocol but like I said I do not understand the cell replacement process, as I still do not know whether I will ever really recover. Hang in there.

CFSi, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

Lynn, it was at the 2 yr

Lynn, it was at the 2 yr mark that I started noticing improvement. hang in there.  14 months is not a long time for how long you have had CPNi.

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

Contrary to what some of

Contrary to what some of other members suggest you, I would not stop antibiotic treatment.

 Your story sounds familiar to me because I have also had and actually I still have a dificult time with the treatment. Your antibiotic treatment makes a total sense to me because you are strongly reacting to them. I was also hit by metronidazol within my third pulse more then a one year ago.

The thing you did not get generaly better does not mean that you did not kill some of your CPNi loads, actually it is quit contrary i would guess. You have to know that this treatment is hard and it does not promise a miracle. Some of your most infected tissues may never fully recover because CPN may live you with something I would name "the blind spots" within nerve, brain tissues. I do not know for sure but will figure this out within my next 2 up to 3 years of my treatment. Now it does not look too good, but I like this place better then where I was before CAPi. In other words the blind spots feel better then the pain that I was going thorugh there. Cheers.

 

CFSi, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

LynnI would think the main

Lynn

I would think the main problem you should concentrate on is the yeast (that antibioticsi probably don't make any better...) and if you can find a way to reduce it, I really believe it will greatly help your fatigue and lack of energy.

Take care

Diagnosed with MSi on March 2009, started CAPi on Jan 2010. Doxyi 200mg- Roxyi 300mg- NACi and all major supplementsi.

Lynn, The things that

Lynn,

 The things that really help me out are the coconut oil, colloidal silver, and bentonite, these are excellet in the fight against these infectionsi. Bentonite is great and should get rid of a lot of the toxins in your system. also like Raven said im going to get some of that Lauricidin, Lauricidin is similiar to coconut milk becuase they botha have lauric acid and monoglycerides which help the immunei system in new born babies. I highly recommend goggling all the things I mentioned here to get a aspect of it. Ive searched high and low for other things besides abxi to battle these infections and these are the best so far I can come up with.

Fibro, CFSi,  Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day,  Still cant shake it but improving.

I have a prescription for

I have a prescription for ketoconaz/gentamic nose drops to kill the fungus in my sinuses.

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Hi Rica, Now, it happens

Hi Rica,

Now, it happens only about forty-five minutes after I take my Rifampin and is nothing like the past.

You actually hit on something important perhaps without even realizing it... 45 minutes...

Lynn and any others that are struggling should pay attention. Metronidazole may or may not be bacteriocidal to Cpni. (I have not seen any data showing that it is.) However what we now think it does is to induce Cpn efflux pumps. This can have a positive effect by using up Cpn's ATP which may induce Cpn into an EBi state so it can shortly thereafter be killed by antibiotics as it converts from an EB to RB state, its most vulnerable stage. However when stressed (depleted of energy) like this Cpn will either take a path to EB or cryptic state. This branch happens in a few minutes and stress to the ones that choose the cryptic path only produces additional inflammation inducing proteins and keeps the cell depleted of energy. Both of these can lead to side effects without any benefit. You can get more chances at converting it to the EB state by inducing it into the RB state with large doses of glucose/pyruvate or caffeine while taking metronidazolei as the cryptic state is induced by lack of energy.

Rifampin is an example of a drug that induces Cpn efflux pumps like metronidazole. It has some advantages over metronidazole. First it has a half life of only 1-3 hours vs. 6-7 hours for metronidazole. That is why Rica only gets about 45 minutes of side effects. Also unlike metronidazole it has been proven to being highly bacteriocidal to Cpn. It does have a downside of being eliminated by cytochrome P-450 though which means it will tend to induce secondary porphyria a bit more. Still it will only do this while being eliminated and that is not very long.

Of course it is not quite a simple as this or we would all be well now. If you are successful in killing Cpn in a cell, typically the cell will undergo apoptosisi and dump the dead Cpn into extracellular milieu. When WBCs phagocytize the cell remains, they will encounter antigenic Cpn material and recruit other WBCs to the area. These WBCs will induce nearby cells to produce NO which will keep the Cpn in these cells in a cryptic state and producing inflammatory proteins and deplete their energy. This goes on for a few days until the recruited WBC's themselves undergo apoptosis.

This is sort of a rambling response but the point is there will be side effects no matter what but you at least want to be making progress. Taking metronidazole without pyruvate/glucose or caffeine might mean making little or no progress but still experience significant side effects. And IMHOi using a drug with a shorter half life like rifampin might make more sense than metronidazole.

- Paul

As regards: "Metronidazolei

As regards:
"Metronidazolei may or may not be bacteriocidal to Cpni. (I have not seen any data showing that it is.)",
have you actually asked Stratton about this? He would be the one who had the data; his assertions are the reason that it's generally been believed here that metronidazole kills Cpn (in its cryptic formi).

I just wanted to add a

I just wanted to add a comment to Paul's post regarding caffeine use along with metronidazolei.  My daughter took a break from antibiotics last fall when she was trying to get rid of persistent yeast.  Her health started to really decline again so by the end of October she went back on them.  Shortly after starting up on the abxi, I learned about adding caffeine to the protocol and she started taking caffeine along with her abxi.  Her health started to immediately improve.

Paul's comment about the relationship between caffeine and metronindazole and how it works on Cpni,  really seems to be reflected in my daughter's continuing improved health.  Since November she has done three flagyl pulses  along with caffeine and she continues to feel better and better.  Her energy, mood, cognitive function are now all near normal levels for a teenage girl.  The BEST and MOST wonderful improvement that has recently developed, is the near absence of the chronic daily headache that has plagued her for years. 

I think the addition of caffeine when pulsing with flagyl may be the key to the speed of her recent improvement.  She has been sick since spring 2007, on abx since Nov. 2008, started pulsing flagyl in Feb. 2009 and added the caffeine in Nov. 2009. 

  Maria

Mother of a teenage daughter with cpni infection. Symptons include migraine, muscle aches, chronic fatigue and brain fog.  Currently taking 1800mg of NACi, 200mg doxycycline, 250mg azithromycin MWF, pulsing flagyli, armour 60mg, 100mg trazodone, iron supplem

Hi Lynn, sorry you don't

Hi Lynn, sorry you don't feel well, I had some glimmers of feeling well and now am back down on the bottom of the pile. I know how you feel as it can be discouraging to be sick all the time. Reading all the posts here are really the only thing keeping me going at this point... the possibility of being well again. Keep your chin up, keep trying and remember there is hope of good health returning, spring is just around the corner too!
FMSi,CFSi, 15 years,CPni antibodies,mycoplasm pn.,leison on posterior pituitary. Started CAPi end of Dec. 08 minoi.100 daily, azith. 250 MWF all supplementsi,compounded T3 therapy.

LynnP~  If you've been on

LynnP~  If you've been on CAPi for 14 months with no improvements, you may want to consider a different treatment approach.  Perhaps retest for the viruses, and if they are high, treat them for awhile, and see how you do.  Then perhaps come back to the bacterial side of your illness...

How long have you been on Valtrex?   What is your dose?

I probably wouldn't take CAP while on valcyte, if you were to try valcyte.  (1) because CAP doesn't seem to be helping you (2) valcyte is a strong drug.  Your doctor is the best to advise you on that, however.

Sorry for your struggles....Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

Lynn, I would highly

Lynn, I would highly recommend getting some Lauricidin (www.lauricidin.com<) for the viral infectionsi and yeast. It is also effective against Cpni. In the four months I have been taking it my viral test for HHV6 has been cut in half. It has stayed the same since '07--nothing has affected it but this stuff. Give it a try. Hang in there, things will get better! Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

But when you are on all that

But when you are on all that stuff, you WILL feel horrible. Richard - husband/doctor - has said a million times that "normal"people don't react like we do to these things. Sorry.  It sounds like the tinii will be better for you than flagyli.

For most of my life, I had sinuses that were always bothering me.  When I started the protocol, it only got worse.  Now, it happens only about forty-five minutes after I take my Rifampin and is nothing like the past.  Hang on and take it a day at a time - don't let this get you.  Make that an hour at a time if you need. 

Rica   

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Lynn, A good number of folks

Lynn, A good number of folks have switched to tinii for a number of reasons, I found it easy to take, not the die off or headaches etc still had those expected reactions however no depression and not gastric irritation, not bad taste just the expected die off related effects.  I take it first thing in the morning on an empty stomach,  if I do that with doxyi I am in misery so I do not have a cast iron stomach as some folks here have but the tini is a vast improvment in tolerabilty it is a 20 year newer drug.  Louise
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <