Cpnhelp.org - Chlamydia Pneumoniae Treatment

Marcia, your heart is in the right place. I always only say what I would do, and having done it, I will say it even more strongly - I would do it again, exactly as I did before. And I CERTAINLY would not do it every other day! Pulsing is what should be done with flagyli - NOT WITH DAILY ABXi! Sounds like you are on the right track (but some of the tracks are missing).

 

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 49 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

 I don't know what this protocol is, but it is not the Vanderbilt protocoli by your description. Going on and off meds is not "pulsing" as it is understood here, in fact this strategy can actually develop bacterial resistance to the antibioticsi. It also does not use metronidazolei which is crucial to the CAPi because the antibiotics (doxyi and Cipro) kill some of the Cpni and drive the rest into the Cryptic state: where they won't show up on titers, so measurement of your antigens tells you nothing about how much cryptic Cpn is still present. Your own reactions to the doxy suggest that indeed this is the case. I have no idea why he is using l-Methionine, an amino acid, as it is not mentioned anywhere in Dr. Stratton's work relating to Cpn. 

In short, this is an idiosyncratic protocol that is not based on the Vandy understanding of what is necessary to deal with Cpn, and is certainly not consistent with anything we know of here in treating it. I don't suggest treating yourself, but finding a doc who knows more specifically of the Vandy treatment protocolsi. 

CAP for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxy, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

FMSi/CFSi 12 yrs., IBSi, Hypothryoid, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni, On CAPi since 10-1-07, Currently on NACi only, From Memphis-USA

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FMSi/CFSi 12 yrs., IBSi, Hypothryoid, EBVi, CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni, On CAPi since 10-1-07, Currently on NACi & Delta Fr. E  Valtrex, Lysine, and Guna Virus

Thanks for the information.  It just confirms that my frustration and uncertainty are valid.  I've been reading at this site since Sept. '07.  But, most of that time was spent trying to digest (through the fog of my die off reactions) the basics of CPni from the handbook. 

I didn't look closely at the specific differences in the Vandy CAPi and my docs CAP until recently.  I'd already planned to discuss this with him.  Sharon, from this site, also sees the same doc.  But, she requested that he follow the Vandy protocol which he was willing to do.  Apparently, I need to do the same.  I don't think there is another doc in town who is treating CPn.

According to my doc, the l-Methionine acts on the EBi's in the same way that NACi does.  Originally, I was on NAC but, because I was so sick, he switched me to l-Methionine which was not as strong.  Now, I'm wondering if I should switch back to NAC??

Jim, thank you for taking the time to explain things to me.  You have given me a better understanding of what may be going on.  I wish I'd posted my questions sooner.  I should know by now to trust my intuition.   

 

FMSi/CFSi 12 yrs., IBSi, Hypothryoid, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpn, On CAP since 10-1-07, Currently on NAC only, From Memphis-USA

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FMSi/CFSi 12 yrs., IBSi, Hypothryoid, EBVi, CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni, On CAPi since 10-1-07, Currently on NACi & Delta Fr. E  Valtrex, Lysine, and Guna Virus

 Sharon- The good news is he is willing, in Sharon's case, to prescribe the full CAPi. You don't need to look for  new doc, just renegotiate terms! It may be he had clinical reasons for starting you differently, and it's always good not to prejudge a doc's decision to modify a protocol for someone without knowing their reasoning. So you might approach it that way-- curious about what his clinical rationale was for modifying this in your particular case, and negotiate from there with a better knowledge base about Cpni and the CAP process. That the CAP symptoms and your CFSi/FM symptoms are a match is very encouraging that improvement with Cpn will make the difference in your illness.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

 Hi Marcia, I PM you.  he does not follow the vanderbilt protocoli.  he generally has a different approach then vandy protocol. I wanted to follow the vandy protocol and he respected my wishes.  

Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBVi, CMV. on NACi 3000mg, doxyi 100-2xday, azith 250 m/w/f/sun, estriol, progesterone, synthroid, and pulsing w/flagyli.

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

Marcia,  Maybe you need to take Sharon with you when you see this doctor.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Thanks Jim.  I do want to understand his clinical rationale and he is one of the "good guys".  He is very open and willing to "think outside the box".  He will be willing to explain his rationale.  However, my mind is made up-I'm going to tell him I want to follow Vandy's CAPi. Even though he has studied CPni and he is brilliant, he does not have the experience, study time or research that Stratton and Weldon have.  Because he sees patients every day, its impossible for him spend anywhere near their time on CPn.

Cypriane-Sharon has given me some good, specific advice re: our doc, via PM.  So, I think I have a plan now thanks to all of you.  I'm just dreading being so sick again as I restart the protocol.  But, I'm willing to do almost anything to get better or even get well (dare I hope??).      

 

 

FMSi/CFSi 12 yrs., IBSi, Hypothryoid, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpn, On CAP since 10-1-07, Currently on NACi only, From Memphis-USA

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FMSi/CFSi 12 yrs., IBSi, Hypothryoid, EBVi, CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni, On CAPi since 10-1-07, Currently on NACi & Delta Fr. E  Valtrex, Lysine, and Guna Virus

Marcia, I sent you another PM...There is a big difference between your tone in the first post that you posted and this last one.  You seem more empowered. I like to see that.  You go girl!!!!!

Hopefully, you wont be as sick if you follow the vandy protocol and take it slow.  You said this, "During this first round of meds, I was very ill each time I increased a dose or added a med."...Marcia,  just take it slower. take 600mg of naci, then increase to 1200, then 1800, then 2400mg. once you tolerate that, then add 100mg of doxyi, etc. Like i said in my PM, you just know when you are ready to increase.  I think we all like to push the envelope a little here.  When I first joined the site, someone told me (and I cant remember who), that this is not a sprint or race, it is a marathon..i learned for me the best approach was slow and steady. we dont want to kill ourselves while we are trying to get better.  plus, you do have slep apnea and cardiac arrhythmias to deal with as well.  

Also, if you start taking a med or trying to increase it, and you feel bad, come to the site and post. tell everyone what you are taking, and how you are feeling. people can give you some suggestions that may or may not  help.  

 Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBVi, CMV. on NAC 3000mg, doxy 100-2xday, azith 250 m/w/f/sun, estriol, progesterone, synthroid, and pulsing w/flagyli.

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

Marcia, To answer your question, yes, you dare hope. Good start, weird mix of meds, that's all. Sounds like Sharon is perfect for this particular exercise in 'horizon-broadening' for your mutual doctor.

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

Good Luck Marcia...

it sounds like you have taken your health into your hands for the better.

You may want to take it slowly depending on your reactions.  Take the supplementsi for support during your journey & have the toxin "moppers" waiting in the wings to flush out the CPni hell raisers.

Expect the unexpected.  Blessings for your journey to wellness.

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 6th pulse 1 X 375 mg 5day

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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

Thank you for the encouraging words.  I will hold on to hope.

I feel so fortunate to have someone like Sharon right here in town and going to the same doc.

 

FMSi/CFSi 12 yrs., IBSi, Hypothryoid, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni, On CAPi since 10-1-07, Currently on NACi only, From Memphis-USA

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FMSi/CFSi 12 yrs., IBSi, Hypothryoid, EBVi, CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni, On CAPi since 10-1-07, Currently on NACi & Delta Fr. E  Valtrex, Lysine, and Guna Virus

Ruthless1-Yes, I am taking my health into my hands and will continue to do so. 

I will have to take it more slowly than I did the first round.  I don't think I can face being that sick week after week again.  My doctor definitely moved me along too quickly. 

And, I am taking a number of supplementsi (that treatment plan needs work too) but I don't have the toxin "moppers" yet.  I will get them ASAP.

 Thanks for the encouragement.

FMSi/CFSi 12 yrs., IBSi, Hypothryoid, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni, On CAPi since 10-1-07, Currently on NACi only, From Memphis-USA

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FMSi/CFSi 12 yrs., IBSi, Hypothryoid, EBVi, CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni, On CAPi since 10-1-07, Currently on NACi & Delta Fr. E  Valtrex, Lysine, and Guna Virus