Cpnhelp.org - Chlamydia Pneumoniae Treatment

Jeanne, you sound EXACTLY where I was 35 months ago. I am taking my evening pills on a break from putting up barn walls all day. My answer is : you have answered your questions yourself with how you feel. My feeling is - WHAT ARE YOU WAITING FOR??? Do it - that is what I think. My first one (flagyli) was 1500mg 3xd for 5d. Only ONE TIME. I begin number 48 tomorrow and plan to do 1125 mg a day for a minimum of 5 days - more if I can do it. It will take at least 4 to 6 weeks after I stop for the aftermath to subside, but I am so looking forward to feeling THAT good. Best luck - I really understand how you feel! Stay with the supps - they are SO important.

 

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. flagyl total 47 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 52 pulses LDNi Rifampin 8/08 again NC USA

Rica, thanks for the support.  I guess I am hesitant on the Flagyli because I don't want to be completely incapacitated over the holidays; and if I take a flagyl this week, it will be Thanksgiving week when I should take the next -- same way with Christmas!

But, in the interim, LOL,since I have been physically following somewhat of your symptomology  can you tell me at how many months on the protocol you started to feel functional? 

I find it interesting that I, diagnosed with CPNi, (CFIDSi/FM), am physically reacting similarly as someone with MSi...... (or should it be the other way around??!!)

Blessings!

Jeanne ~CPN 4/2007; also HHV6, EBVi, CFIDS/FM; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues (hypo); prior bronchitis/sinus problemsi. 200 mg/doxyi & 250 mg AZITH M/W/F, supplementsi

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JeanneRoz~CPNi diagnosed & started protocol  4/2007, also HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.  3RD pulse 7/7/2008=500 mgTINI:4day

Rant away, Jeanne!  You sound like you need it.   You're always encouraging me - you're such a good soul, and I hope you find improvement soon! 

I'm wondering if you could let me know (PM if you prefer) where you were healthwise before you began the CAPi.  I'm interested, because I'm following you, and I'm wondering if you were worse off than me to begin with. 

I know I sounded really positive in my update last night, but I left out the negatives.  It's just that I was so bad in the "Summer of Cipro" that where I am now is relatively better.  I am not, however, better than I was before I started the CAP.  My CFSi had me on a downhill slide since early 2006, and I can't say I'm doing better, just that I'm not as bad as I thought I might be so far.  I'm not up to the full dose of doxyi yet. 

Compared to many others here, though, I know I'm very fortunate.  I am able to work and have somewhat of a life.  My heart really goes out to you and all the others who are in the dark days.  My appreciation goes to all those ahead of us who keep encouraging us and pulling us through.  They're exploring a New World and showing us the way through the forest!

Thinking of you - wishing you well ...

Finch - Western PA USA

ME/CFS since 1991 - CPni diagnosed June 07 - began Cipro 750 mg 2x per day - added NACi 600 mg 2x per day July 07 - Stopped Cipro and began Doxy 100mg 1x per day on 9/18/07 - Azithromycin 250mg M-W-F started on 10/10/07.

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Finch - Western PA USA

ME/CFSi since 1991 - CPni dx 6/07 - began Cipro 1500mg per day - added NACi 7/07 - switched to Doxyi 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc

Pulses are theoretically at your choice. And yes, my fatigue was incomprehensible. If you can't wait - I simply could not - you could try one pill. For me, it has always been an accrued deficit - with each pill I sank further emotionally and physically and it took as long to emerge from it. THEN would come those incredible days of feeling better than for years. Each time, after a couple of weeks my legs were screaming that I had to do flagyli. I always did lots of charcoal - when I learned about it - and it really, really halped. After many pulses I realized the rhythm - probably my mind as well as my body was beginning to clear. It was much better with flagyl than before but it was hard. That was ok - it's still ok because it is so worth it.

 

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. flagyl total 47 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 52 pulses LDNi Rifampin 8/08 again NC USA

Don't lose heart. 

I had been on a regular exercise program for nearly a year before I started the CAPi.  If I had not, I would not have been able to keep working.  If you are starting the CAP from an exhausted state, it's going to be hard.  Still, eradicating this bug is a worthy goal.

I think the handbook has a section in which one of the doctors (Dr. Stratton or Dr. A) recommends starting with just one flagyli and then watching for any reaction.

 

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

Jeanne, sounds to me like you need some Flagyli. As mentioned, try one pill and see what happens. I began Flagyl about 5 weeks after Minocycline and Azith. The first time I didn't get much of a reaction---did seven days by mistake! But the second round, I could only tolerate 2 days of it--must have shaken the critters up and then killed them. It took me about ten months of the complete CAPi to finally get my energy back.It's a very long term process for some of us. I'm now on year three and still have some reactions so I know I am still killing the beast. So don't get discouraged---we have all felt like this at one time or another. We just pick ourselves up and get back to the business of getting well. Stay on the healing path, Raven CAP since 8-05 for Cpni and Micoplasma P. for MSi and/or CFSi

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CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi Also EBVi and HHV6

Jeanne - The 'tormenting whispers' show you what will come. Those good days will reveal themselves and retreat. Then they will visit a bit more often, yet again retreat. And one day, you will realize you've recently had more good days than bad and then you will KNOW how much you've improved. This is not me encouraging you; it is just fact, as so many of us have experienced it. You are exhibiting a classic response to improvement. The veterans here will comment occasionally that we know you're improving when you start to show impatience. Funny how we are like obedient sheep when we're really ill, yet once we're improving we want it all and we want it NOW. It's actually a good sign. Also, you've delineated a bunch of very nice improvements to date. Brain fog lifting is not just a sign the protocol is working for you; it is also the means by which you start to address your life and your plan and your treatment realistically and with a lot more clarity. You may FEEL down (which could simply be die-off), but you sound like you're improving nicely to me. I'd go for the flagyli.

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

Sunshine!

I think where you are treading is where I was 1 year ago having been off work already 6 months by that time.  gurl, you are sick & it is OK.  You are recovering from a heavy CPni load & will feel accordingly.

It is absolutely fabulous that you have a break in the brain fog.  That is a huge improvement.  I still have times during the day where I am not good that way.  The ear ringing is tarting to get somewhat annoying, but I know it will pass.

Take that first Flagyl tablet & wait for the fall out.  Time to get on with it.  With your Thanksgiving being so close to Christmas there is no time that will be great.  You are off work now so make the best of the time.  Don't worry about others who can work right now.  We cannot & that is what matters most; our recovery, your recovery.

Those of us who have ME have different reactions to the abxi & CPn die off that the crew here with MSi.  I have been noticing this as I have been reading posts.  Perhaps it has more to do with CPn load, I am not sure, I am not a scientist afterall

You are going to be just fine.  Enjoy those whispers of wellness, they are signs of what is to follow.  Have faith in that & work on that whole patience thing; I know I have had to & I think God is smiling as a result.

Think of this, how bad you are & the devastation this insidious bacteria can cause.  I prefer to think I will not only have the view of the birdies out the bedroom window in my fabulous MayDay tree; but a view from long walks, drives & holidays with my new found body post recovery! (if that makes sense)

The stress of chronic illness is something else, that is for sure.  You can do this friend, pitter patter, let's get at them!  KILL THE BEASTS!!!

oNward & uPwArd.........

you MAD CAPper you!!!!

Grace & Peace

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, 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

 Flagyl for Xmas and Thanksgiving? Oh Goody! Not!

I'll give the minority opinion here: clear the overload for a bit before raining flagyl. At any rate, if you do try a dose or two do so after Thanksgiving and after Xmas! Now, you should know that I'm of the persuasion that anything worth doing is worth overdoing. In fact, I'll add that to my signature! So, do what I say not what I do...

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tinii pulses.

"Anything worth doing is worth overdoing."

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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

No need to do flagyli for both holidays. I started a full-dose flagyl pulse the day after Thanksgiving. I lounged around all weekend (no big reaction at all). I did the second right after Christmas, I believe, though I'd have to check to make certain. No biggie then, either, just a need for more sleep. Basically, if you do a baby-pulse Thanksgiving weekend and it proves difficult, hold off til after Christmas to try again. No need to punish yourself.

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

Maybe I'm missing something here. Why not take 1 or 2 flagyls now and then wait for the next pulse until 1/1/08? They don't have to be every 4 weeks. I get extremely ill when I pulse and I'm still teaching part-time. So I only pulse between semesters. Hopefully, you will then be able to enjoy both holidays and get down to the nasty business of getting well next year.

 

PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

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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.

Hi Jeanne,  I see from your signature that you are now up to Azyth MWF so that is great. 

And I am wondering about all the anti-porhoric measures and the timing of your meds etc.  For me, the other day I took doxyi 200 mg in the evening, I usually take it BID 100 mg am and 100 mg pm with food.  I took it because I was not SURE that I had taken my morning dose.  I can definitely tell the difference even now after all these months on Doxy when I take the 200mg all at one time. And if I did take it and did not remember which I suspect that I really did take that morning dose then I got my level up in general and more effect for me subjectively.        So, I wonder if the cycling effect of die off on the antireplicants  abxi continues even after the initial 4 - 6 months for those of us with higher bacterial loads of one organism or another.   So the porphoria rises on the radar screen to be once again to be delt with, just when I think it is quietly at rest.    

I ask about well spaced food, 5 small meals a day?  I ask about fluid intake on a schedule.   An some well spaced glucose or smarties or my old standby "Nothing dose it like 7-UP" taken judicously as a "medication" in a timed fashion over the day.   

And I ask about menopause and find for myself   25 mg DHEAi and 100 mg Pregnonelone both available OTC were and still are helpful to me.

I found these 1 year before being Dx with CPni and and I believe that if I had not been taking these throught the start up of the CAPi I would be talking fatigue much in the same way that you are.   I started these supplementsi after reading about them in Chris Northrup's book the older version.  The explaination has been cut out of the updated version.  Try the library to find an older copy or Amazon for used books or an other on line ( I am blanking on such an easy thing oh yes Ebay).  Personal Mail me if you want to ask about the ISBN etc and I will spend the time when I have it to give you the specifics.  Her information is practical and she is licensed OB/GYN.  I see her occasionally at meditation group.

Well, I have to get it together to start my 150 mile tip to the new doctor and do the marketing for myself and for others for the CAP.  Please all send positive thought that the doctor will be very glad to get the information that I will bring and that I will get what I need for myself.  Changing ships in the middle of the ocean is not great when it is not of your own choice.  

My alternate choices will be start to progress on my own, which can be done  and or travel 800 miles to another source of treatment that I believe will be receptive.  

Once again I am in gratitutude for this source of open information and support from them that is doing it!  

Louise 

Louise, USA, Northern New England. CPn, Bb(Borrelia B., Lyme,) CFSi. 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, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi, Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

The worse thing about this treatment is not the taste of flagyl or the bad days, but how long it takes to get a bit of certainty that you are actually getting better.   But there is not cure for that you just have to go through it and then look back from whence you came to know that you have made progress.  

We all rant, we all panic, we all wonder what if this is not working for me... but the vast majority of people do make progress.

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

Flagyli for Thanksgiving? Funny thing, my first year I did just that. I was also cooking dinner at my house for the relatives. The turkey came out great but I cut my finger when the knife slipped (my crazy aunt called to say she wasn't coming at the last minute and I was juggling the phone, the knife and a big piece of cheese.)Not much appetite for dinner but it tasted good. Two days later I was really slammed. But I guess it was more important to me to just get on with the treatment. Raven CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi

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CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi Also EBVi and HHV6

I have more than a week of leave scheduled around Thanksgiving and nearly two weeks scheduled around Christmas so that was when I planned to do Flagyli pulses 1 and 2.   The timing seemed pretty close to ideal.

Given that I have had pretty pronounced reactions when I first started taking NACi and then more reactions to the Doxyi and still more when I added in the Zithi, I figure I'm in for the Flagyl version of "Mr. Toad's Wild Ride".   I'm not looking forward to losing both holidays, but if it means that I'm walking for the next 20 or 30 Thanksgivings, it seems a small price to pay.     

 

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

Raven, I remember that! How wonderful that you are better. You have certainly earned it.

 

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 47 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 52 pulses LDNi Rifampin 8/08 again NC USA

Thanks everyone for your input.... I don't want to stall my progress or this process, but considering how nasty I was when I first started the Azith, I think I'll take my Flagyl  right AFTER Thanksgiving. 

With my initial drastic personality change , I wouldn't want to chance taking the knife to something other than the turkey! LOL..  

Jeanne ~CPNi 4/2007; also HHV6, EBVi, CFIDS/FM; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues (hypo); prior bronchitis/sinus problemsi. 200 mg/doxyi & 250 mg AZITH M/W/F, supplementsi

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JeanneRoz~CPNi diagnosed & started protocol  4/2007, also HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.  3RD pulse 7/7/2008=500 mgTINI:4day

LOL Sunshine,

glad to see your sense of humour.

Yes, we wouldn't want a display like I had on our Thanksgiving Day, the dreaded day 8 for me!

Blessings

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, 10-31-07 3rd pulse 2 X 250 mg 2day

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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

Jean,

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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.

Arttile... thank you for you suggestion on the flagyli... I definitely will go slow...but fyi -- I haven't worked since March, I had to resign from my position as I was that sick before I even started CAPi (or knew that I had CPNi) -- this has not been fun (but then we all know that, LOL)

Jeanne ~CPN 4/2007; also HHV6, EBVi, CFIDS/FM; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues (hypo); prior bronchitis/sinus problemsi. 200 mg/doxyi & 250 mg AZITH M/W/F, supplementsi

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JeanneRoz~CPNi diagnosed & started protocol  4/2007, also HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.  3RD pulse 7/7/2008=500 mgTINI:4day