Cpnhelp.org - Chlamydia Pneumoniae Treatment

YES SISTER!!!!!!!!!!!!!!!!!!!!! KC dx msi 1996. started capi 10/05. Started with tinii pulses switched to flagyli pulses. Now almost on continous 500mg flagyl but do need breaks. On doxyi 200mg/day azith 250 mwf and NACi only 600mg. No vitamin di now since the combo makes me go beserk. Comi

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dx msi 1996. started capi 10/05. Started with tinii pulses switched to flagyli pulses. Now almost on continous 500mg flagyl but do need breaks. On minoi 100mg/day biaxin 1000mg day and NACi 600mg. ldni 2.0mg.

Wiggy, Fandabidozzy as they say in Scotland... Seriously though, this is such good news for you and for the rest of us too.   It just shows you that although you may be getting some worrying symptoms and may even be feeling worse at times that there is some progress being made and the healing is happening... Albeit very slowly.

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

Wiggy -

Joyous News!  Congratulations! Good luck recreating neural connections and networks with your PT!

Go Wiggy!

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAPi 5/10/07. Doxyi 200 mg, Minoi 100 BID 9/1/07, AZI 250mg QD 9/10/07, Rifampin 300mg QD, NACi 1800 mg, HD Flagyli Pulses, Novantrone, Prednisone & daily lb of supplementsi.

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Thanks everyone for your support and yes this for me is a miracle. I remember when that large lesion showed up as my neuroi was upset to say the least. As I had many small lesion and than one large one. I am going to scan my report and put it on this site and thisisms. I haven't seen the films as report just went to MD. I think it was that large lesion as report said "prominent lesion is decreasing in size". The news I need advise on and I think it is because I burned arm bad is my MD told me I may want to think about taking a 3 month break from antibioticsi after my arm heals up. Why? After that great news. She is worried about bacteria resistence. She explained how bacteria get wise to antibiotics and change forms so they cannot be killed. She told me at this point 'WE LOSE' and thinks its smart to take a break. I know this protocol was developed to avoid resistence. There is also a scare here in US that my husband just sent me http://www.foxnews.com/story/0,2933,303237,00.html which could be why she is concerned. I am not sure. I know I have to stop if my liver function become out of control. For me it would be hard to stop and start back up but I think I could consider that intermitent schedule as a compromise? I think my load is huge - and stopping is just going to allow for setbacks is my thinking. My husbands view is maybe she still does not believe I have an infection? My toes have had a fungus forever - I started treating last April. My left eye has been infected from using contacts since July. I am wearing glasses pretty much full time. I feel like one big infection and often feel "toxic" as Sarah describes early in her blog. Advise is needed as usual and apprecited! On Wheldon protocol for MS since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004

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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

Wiggy,

me personally, I would not stop the protocol.  Bacteria is bad bad bad for our bodies in soo many ways & you are experiencing some of these symptoms on the outside too.  Imagine the Chao & Havoc it is doing inside that we cannot see.

I would be concerned about making the insidious Cpni resistant by stopping the CAPi.  I prefer the idea of keeping the sledgehammer swinging at the beasts.  Look at the most excellent way it is helping you at this time with your lesions; that is huge!!  I could wait for the toe jam & eye bother to go for that benefit.

IF we face a bacteria that is resistant, can we not cross that bridge if it happens?

Anyway, of course the decision is yours. 

Onward & Upward

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 9-30-07 2nd pulse 1 X 250 mg Metroi

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Wiggy, I didn't follow the link as I suppose it is the story about the student who died and how this bug is antibiotic-resistant. It's been the lead story in the papers, as well. In the meantime, you are treating the disease you HAVE, not the disease you MAY someday be exposed to and MAY someday not be able to fight off on your own and MAY need antibiotics for which you MAY find the bug is resistant to. My answer to the neuroi who refused to prescribe antibiotics for me, because 'what if you need antibiotics to fight an infection someday', was, "THIS is the infection I need antibiotics for. This is THE BIG INFECTION of my lifetime!" All those times I was so tough and didn't take antibiotics, I was saving the use of abxi for 'the big one'. Well, if stealing my ability to walk, to remember, to stand from a crouching postition, to drive my car, to climb stairs, to swallow and to see out of my left eye wasn't reason enough to give me the antibiotics to cure me, I surely don't know what WAS a good enough reason. P.S. I don't believe in going to intermittent therapy until one has achieved all the kill-off one can. You still have reactions to the meds, so you're not ready for intermittent yet. Show your doctor the studies on how one deliberately creates a resistant strain and then ask why the doctor is putting you in exactly the same situation.

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

Let's see .....my body has a HUGE infection which I have had some success with - just about for the first time in history -, my arm is badly burned and MAY get infected.....shall I stop treating the infection I have or stop and wait for _____? Sorry, but to me, this is like the discussion about shall I take the dewormer or keep my pet worms? You have to make your own decision, Wiggy.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 46 pulses NC USA

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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

I would like to hear from the people who have first-hand knowledge about this, but my understanding is that resistance comes about when the antibiotic treatment is either not strong enough or is not continued long enough to eradicate the infection.  The most vulnerable organisms die first leaving the less vulerable ones to replicate.  Thus, "taking a break" from antibitotics would seem to be more likely to create resistance than continuing a theraputic dosage. 

Also, a personal note on methicillin resistant staphylococcus aureus (MRSA).  In 1986, I was invited to consult on a project by a state health department looking at the management of nosocomial (i.e. hospital acquired) infectionsi.  This was sparked by an unexplained rise in the incidence of MRSA infections in certain hospitals.  The project came to nothing when someone noticed that infection rates fell when the hospital administration started paying close attention to whether people were actually following existing disinfection protocolsi.   My point is not to minimize the threat of MRSA as a pathogen, but to make the point that it's not new and that I believe that had we not had a school district shut down at about the same time someone published a report saying MRSA was deadlier than AIDS, this would still be something primarily of interest to hospital administrators, state health departments and disaster movie producers.  

 

CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (2 x week). Waiting to first Flagyli pulse.

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CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week).  Fourteenth pulse metronidazolei + INHi completed 10/17/2008.

Ruth - I agree, why go backwards when I am making progress? I was shocked. Mackintosh, Yes, that is the story and I am assuming doxyi, and zithi couldn't stop that bug anyway! I will take in the stories and maybe notdoneyets story. Why put off treatment when its going good? I don't get it but something happened from last month to this month (as I see her monthly) - last month I was continuing and this month she is talking break. I went to urgent care and told them what I am taking - maybe I gave her name out - don't remember. That could be a problem On Wheldon protocol for MSi since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDN 2004

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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

A friend asked me the other day what would happen if I was on antibioticsi long term and got an bacterial infection anyway.  Now, maybe there's a flaw in my understanding of the biology involved, but in order to get an infection, doesn't someone have to be exposed to the bacteria in the first place?  And then once exposed, doesn't the bacteria have to find somewhere in the body that is hospitable so it can "set up house"?  And then once it sets up house, doesn't it have to find the environment suitable for its reproduction?  And once the environment is suitable, doesn't it take some time for the "babies" to be born?  And doesn't it take a lot of babies to say you're infected?  After all (and I know there's probably an exception to this somewhere), 20 bacteria are not an infection; 20 Billion bacteria are.  

I told him that I figured the chances of getting exposed to something that would find a sea full of Tetracyclines, Macrolides and Nitromidazoles to be a hospitable environment was low enough I was willing to take the risk. 

CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (2 x week). Waiting to first Flagyli pulse.

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CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week).  Fourteenth pulse metronidazolei + INHi completed 10/17/2008.

Wiggy, somehow, I expected such results for you Can't wait to see them if you post them. But, of course, expect the skepticism from others, questioning whether or not the presence and/or activity and size of the lesions means anything at all. And, whether or not the type MRI machine used, was powerful enough to detect even the smallest of lesions. But, my guess is that there would be no new or enhancing lesions detected at all, even with the most powerful machines (see my signature line? I refuse to change it).

 

What I told my GP, who like yours, wanted me to take a break from CAPi right after my MRIs came back with the same results as yours, was; "no, I never, ever want anymore MRIs that show any enhancement!" That, fortunately, was enough for him. I guess that he wasn't particularly concerned with resistance. So, for yours, maybe take her a copy of articles about the recent Harvard study that uses antibiotic combos to fight resistance? Here is the PubMed abstract. And, here is an article about the article that appeared in Nature. Of course, you'd have to pay for a subscription to Nature for an actual copy of it. Sheez..I would hope she would be professionally wise enough to consider Vanderbilt and Harvard, over FoxNews, anyway.

 

As far as your liver function goes, this shouldn't become an issue as long as you are on NACi. I know my daughter's was, until I started giving her just 500mg/day. Never a problem, since. And she's on really heavy meds.

 

Am so happy for you that you've found a great PT! This is wonderful news, too!

 

--Minai

 

RRMSi, diagnosed 2/04. NAC 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAP with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

hdwhit, My sister is in infection control and she would agree - if the hospitals would follow the procedures we would have a lower infection rate. I agree with the risk factor - I think there are risks with every treatment. Rica, I had to laugh at your comment as it is the same as my husbands. I do not get it either but maybe she does just want to hear me say I'm staying the course and not looking back and are you with me? Minai - I did not remember that this same thing happened to you and thanks for letting me know. I appreciate the articles - I will take them in on my next appointment. You are right on the MRI - I expect some will say - it doesn't mean anything....but I know it does and that is all that matters! I expected maybe cracking open a bottle of champagne at my appointment not talking about breaks. Today, I referred someone to this site and I hope she makes it. She is on 2nd drug - third neuroi.... On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004

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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

good for you Minai, thanks for the links, it would seem logical to me, but I don't have a medical degree?

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 9-30-07 2nd pulse 1 X 250 mg Metroi

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

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Sarah , As much as I believe docs may be over using anti -biotics ,they are doing it because people are developing these chronic coughs that do not go away . Its not that we are over using as much as we are treating with the wrong method . Until they really discover just how much cpni is invading our lives we will continue to keep developing resistance. I know you are one who does not see this skin anomily but believe me I do and it is getting worse with every passing day. Researchers are doubtfull about cpn being the cause because it is not the only contributing factor, it is the combination of cpn and viruses . ....chuck

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treating reiters syndrome, cronic fatigue, heart symptoms, myalgia symptoms, started with doxcycline 200mg and rifampin 300mg in jan 15/05. switched to doxyi 200mg and azithromycin 250mg m.w.f in sept 06. after being on abxi for two years now doctors dont t

Sarah, Thanks for all the information - I think that she will be fine with me saying - I don't want to stop but just need to tell her why. Yes, I want to be done one day - not putting stops in the program only to get worse before I get better. I will be on abxi forever. Thanks for Alex's MRI blog. 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.

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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

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Wiggy......A very deep heartfelt congratulations and to all those getting better!! I will post my MRI results from 10/10/07 but need to say this first. I don't wish to take any of your rush but only will report my results as full support of what I say below and support to everyone else doing the treatment or looking into the treatment. Stay on the abxi straight away as you are. Change them up every month or so and monitor your liver, etc., carefully throughout and it will pull you through. I can definitely say that is the only way to do it from my standpoint. I know it's easy to say and nothing but tough to do as everyone is different. Taking a break now just prolongs the treatment. In my mind, I intend to drive this to the end voraciously yet carefully and never deal with MSi again. Bye, Bye, MS and Neuros. There should be some course of action that somehow can pull these Neuros together who are seeing the results first hand with our successes. The medical field need to change and support this. Period. Wiggy.....wishing you the best with sincere Yippeeeeeee!!!

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06.  CPNi past and new chronic infectionsi.  Lyme suspicious titers and Babesiosis found.  Started CAPi 6/1/06.

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Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MSi 5/4/06.  CPNi past and new chronic infectionsi.  Lyme suspicious titers and Babesiosis found.  Started CAPi 6/1/06.

I can't stop smiling, after reading that, Sarah! It's so gratifying when someone 'gets their life back'.

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

Hdwhit, I'm memorizing your phrase, "I willing to take the risk".  It covers so much, is succinct and reflects what participants on this protocol are choosing; taking the risk and hope that CAP is the possible solution to many conditions where there are no real hopeful options for reversal to be offered.  Thanks for sharing!  Louise

Louise, USA, Northern New England. CPni, Bb(Borrelia B., Lyme,) CFS.     Started CAP 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 2400 mg. 

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Karl, Thank you for your note of support and I will continue to move upward and onward! Glad you are doing well and cheers to bye, bye MSi and Neuros..... On Wheldon protocol for MS 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.

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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