Cpnhelp.org - Chlamydia Pneumoniae Treatment

Todybear, you don't say how many days it has been since ending your last pulse. Are you taking flagyli or tinii? Stil, after four years, a pulse knocks me back two years, and can take as long as seven weeks to feel the last dregs of pulse symptoms. Another thing that it took me many, many months to realize, is that the most devastating pulses had the most recovery. We never know what will happen - certainly keeps life exciting. Incidentally, I empathize with the "sheer will" bit.

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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 ended my last pulse of Flagyli August 27th. I did 1000 mg each day for three days.

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 3 days once per month

That is not very many days after. You are wise to step up incrementally - you are getting a good taste of what can happen, and won't be so terrified when you get "whompped" again. As a matter of fact, you may be pleased. (I believe it has been said "We are so weird!"). The statement "Patience is a virtue" begins applying to us about now.

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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

katman, so what you are saying, this is not only normal, this is desirable? I won't worry if I can honestly say it's normal to lose temporarily what you have gained back. It's difficult to explain to others what is happening. They don't relate to how you can regain so much and then fall back into a bad place. I need to be able to tell them, it's the way the treatment works.

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 3 days once per month

Hi Tody,

My last tinii pulse of 2 days ended on Aug 26th and I'm still "not right" either.  As I look back over my journal, I can see I was already beginning to get some effect from the other 2 abxi I was taking and so the pulse compounded the prob, IMOi.  

After reading thru Jim K's old blog entries I realize that these aftermath effects of pulsing are all part of what is to be expected and it appears that the more you feel set back, the more you prob accomplished from the effects of the pulse and/or the daily abxi.  That's how I interpreted it anyway.  

It seems to me that until a few more months go by I won't really see much progress and I don't expect (now) to feel much better than I do until after I get further along.  I will wait to see how much more I improve though before doing another pulse but I think once a little more time passes I'll be able to do another one.   

I talked to another person that has been on several different abx and antivirals and she said it usually takes her about 4+ months before feeling some good effects each time she begins a new med so I'm holding onto that idea for now thinking I have at least another month or two before I feel very much improvement. I think you and I started nearly the same time. 

Hang in there.  I think from what we're experiencing we are both on track and will have to be patient; not one of my strong points. 

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Reenie got it as right as we can get it, I think. "Normal"? As my Dr R (husband) says "This is not acceptable medical practice". Then he adds "But there is no doubt that you are better". And I say I don't have time to wait til it is. We can only say what has emerged as normal for each of us, probably while holding our breath and hoping it will work for us. We are all volunteers here. And there is a collective cheer as each volunteer gets improvement.

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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 don't think guinea pigs have a choice whether or not to volunteer. I know we do, but we are still guinea pigs. There is no cut and dried proof or even any documented testing for the protocol so we are bravely going where no guinea pigs have gone before. I am glad there are those that have gone before me here that I can ask my inexperienced questions to. If I have a chance in the future, I want to be one of those mentoring sorts that supports the fear, frustration and questions of those like myself.

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 3 days once per month

You will. Everyone goes from terrified newbie to terrified backslider (even me, when my hair started falling out in droves), to accepting of the 'two steps forward, one step back' progress of the treatment. Then they 'get it' and then they start comforting others who are starting where they had started months before and because of their experiences, they begin to give good advice.

It's almost as predictable a pattern as the rollercoaster manner of our recoveries.

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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

Tody,

I prefer the term guinea "hens" for those of us of the female gender, as one friend of mine so eloquently identifies us as... 

I do have a question regarding pulsing, to get back to Tody's original posting/question... 

So is it best to proceed before feeling completely recovered from the last pulse, if it's possible to remember exactly what that feeling was or is it best to just forge ahead after 3-4 weeks have passed regardless?   

 

Reenie, fellow guinea hen 

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

That is a hard one, and I have done both. Dr. Stratton says go as fast as you can, and no faster. But those very precious moments of feeling so good are good for you physically and mentally. And I still don't really know what the cause is - inflammationi, the flagyli, or whatever makes this work. We NEED the good part, too. There is also the fact that, at least for me, the good part did not come AT ALL for months and months.

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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

New symptom. My back, along the left side feels hot, not to the touch, just a neurological feeling. It kinda feels like a mild sunburn or like I am against a heating pad. Really wierd.

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 3 days once per month

I think this happens to quite a few people and also it is not unusual for symptoms to appear some 10 days after the end of a pulse.   It is scary for MS patients to go through this.   Some progress that has been made in the past has been the result of a long struggle with exercise and it is very hard to see it all fade away again..   But it does come back eventually.... Patience

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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

Thanks Michele for speaking about the MSi perspective of fear of lost recovery of function.  I, not having any remarkable neuroi symptoms, could move even when I was out flat, I just did not have much get up and go over to the other side of the room energy etc, and I couldn't think very well either or speak predictably either.   Both ways of feeling the results of CAPi are very scarey, and more so  if you don't have the expectation that these things can possibly happen at some point for you.

I believed that there were no other options that could offer my as much possibility to return to function, so a bit like you Rica I kept on keeping on with the treatment. 

My concern for MS folks is how to know when going very fast is the best choice vs taking a slower pace to avoid overwhelming die off.   I do not have that issue but I would be concerned about that if I did have obvious neuro impairment.  I know this topic has come up over and over here.  That is why the archives are so wonderful, you can sort through some pretty amazing conversations that can be very helpful.      That is how I decided to try cholestyramine to take me out of the fog and fatigue of porphoria, it was old new that I found and decided to give it a go and it was like night and day even through pulses.     Not for everyone but sure works for my situation.

Todybear thanks for starting this blog and sharing your thoughts.      Louise

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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

Michele, with your experience with Ella etc, would you suggest that I go ahead with a pulse on my schedule regardless how I feel at this time? Would it be smarter to wait? I would be scheduled for a pulse to start Sept 15 so in five days. I am still dealing with a lot of weakness. My legs are giving me real problems and my feet with neuropathic pain. I know that I need to do what I feel is best for my own body, but what are your feelings?

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 3 days once per month

A few days may help, Todybear. Wait a few and don't feel guilty. Some pulses are just plain hard.

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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

Tody,

If you just finished your last pulse on the 27th, the day after I finished mine, how come you're scheduled for another pulse on the 15th when I'm only scheduled for the 25th?  

My understanding is once a month for pulsing which would make for about 5 days on (some do a week) and then 3 weeks off so I just picked the 25th each month as my 1st day of pulse.  

Anyway, I'm going to wait until I feel better first before adding "insult to injury"! 

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Consider each month to be 28 days. On days 22-26, do a pulse.

OR look at a calendar and pulse on the last five days of each month.

However you do it, you should have a minimum of 23 days when you're not on a pulse.

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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

Reenie- A quote from Wheldon Protocol in the Cpni handbook. "Two or three months into the treatment regimen, or when the patient is experiencing few problems with reactions, three-weekly cycles of intermittent oral Metronidazolei are added. During the first cycle metronidazole is given only for the first day. If problems with reactions are found, the period of administration is kept short. When metronidazole is well tolerated the period of administration in each cycle is increased to five days." I asked Sarah what the three weekly cycles meant, and she told me that meant every three weeks.

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 3 days once per month

Tody,

I may be wrong but I think it's meant more like 3 weeks off and 1 week on, more like Mac's response below, "...you should have a minimum of 23 days when you're not on a pulse..."

You might want to think of giving yourself a little more time in between pulses especially since you're still recovering from your last pulse.  I'm waiting to feel a little bit better myself. 

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Hi Tody,

Like Reenie, I too thought it meant 3 weeks off, one week on.  That's how I'm doing it.  I've been reading your posts and have enjoyed those you sent me; I rarely post myself.  I feel that I consistantly regress and have had nothing to encourage me other than it's my understanding that feeling worse is "good" so I'm just truck'n on.  Best to you, dear one    

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Mary Ann

SPMSi. Dx 1991. EDSSi 6.5.  Weldon CAPi; 3/08  NAC 2400, Doxy & Azith. 6th metroi pulse 11/08 

Hi Tody,

Like Reenie, I too thought it meant 3 weeks off, one week on.  That's how I'm doing it.  I've been reading your posts and have enjoyed those you sent me; I rarely post myself.  I feel that I consistantly regress and have had nothing to encourage me other than it's my understanding that feeling worse is "good" so I'm just truck'n on.  Best to you, dear one    

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Mary Ann

SPMSi. Dx 1991. EDSSi 6.5.  Weldon CAPi; 3/08  NAC 2400, Doxy & Azith. 6th metroi pulse 11/08 

Mary Ann, sorry that you have been struggling. My heart goes out to you. I hope for your recovery.

As for the pulsing, I just went back to IM's that Sarah sent me and, yes, she did say every three weeks. She said that it meant three weeks from the start of each pulse you do another but she always went three weeks from the end of each pulse. So if you ended one on the 5th you would start another on 26th. It's confusing and that is why I asked the Wheldon's directly. I am trying to follow the Wheldon protocol like Sarah did as closely as possible as her case was so like mine. I say this because of how it started progressing like mad at one point after being ill.

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 3 days once per month

Okay, let's be clear here.  DON'T pulse 'sooner' rather than 'later'.  I've gone as long as two months between pulses because of holidays, or whatever.  I would NEVER have done two pulses so close together the first year of treatment. Never. And I am the princess of 'dive into the protocol full-out right from the very first day'.

 You do yourself no good pulsing in such rapid succession, as you are experiencing. Flattening oneself in order to adhere to an artificially imposed timetable is pointless.

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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

Tody,

Here is the grid of pulses copied directly from David Wheldoni's website.  As you can see, each red mark for a pulse is only done ONCE in a month never more often.  It starts in the third month after treatment begins with the bacteriostatic antibioticsi.  I agree that it can be confusing but a picture (or graph) is worth a thousand words!  

 

 

 

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Lets not get ourselves tied up in knots over timing.   We all do it differently at different times in our treatment and the rule of thumb is do it as fast as you can and no faster, and in the beginning this can mean pretty slowly...

If you feel you need three weeks or more between pulses that is what you should do, later when you are tolerating the treatment well enough you can add pulses at different intervals.   In my treatment at present I start a pulse every 21 days, they last 5 days, and although I have tried on occasions to make them last longer, usually the terrible heartburn and taste make me give up after 5 days.

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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

 

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Sarah, those hateful fruit predators! I have fought the good fight this year, but I lost about 50% of the grape flowers early on to a very wicked hail storm. It was a horror to see all the flowers laying on the mulch below the vines. In the long run though, I guess I didn't need the enormous quantity that there might have been. I still have a lot and I think they are likely bigger due to less of them on the vine. Now that they are getting sweet and ripe, the  birds would love to fill thier bellies but I managed to get them wrapped early enough. They are purple now but need to sweeten just a little more as they still are a tad sour. 

Thanks all for your advice. I talked to my caregiver husband this morning regarding the pulse timing and he said much the same thing. Don't overdo it but do what you can. I don't want to wimp out and not do the pulses when I should be, but I also don't want to do them when I am unable to manage them. I will see how I fare in the next few days.

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 3 days once per month

Todybear,

This is my latest symptom, too.  It is worrisome for me as well.  You might consider increasing B complex and proteolytic enzymes such as Bromelain.  These enzymes help reduce inflammationi naturally.  I think Zyflammend[sp?] has proteolytic enzymes.

I find that I hardly need Ibuprofen when I take Bromelain.  Keeps the gi tract moving along nicely too.  I know it contains sulfur which is a no-no for me, but when the pain is bad it is worth it.

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.