Cpnhelp.org - Chlamydia Pneumoniae Treatment

Well sometimes it seems best not to be lab tested in some cases.  Of course I am only speaking of myself. 

I have feaked out my recent consultant who after afirming that it would not be wise to stop Doxycycline ( from a Lyme perspective at least) on the very next day did not feel comfortable continuing an Rx for Doxycycline let alone advancing to macrolide or azole.

I now am scanning as much data as I can and find that my longstandiing Celiac Dx may be expressing itself in a way that I was not at all aware of.  Also have read that Celiac is now considered by some to be auto-immunei? 

My conundrum is to stop a suggestion to stop treatment for 6 to 8 weeks and take Milk Thistle for 6 top 8 weeks, as suggested with the Naturopathic Licensed Provider.  This person also quickly began to talk about tweeking the Wheldon protocol and the value of Chinese Herbs in the treatment of Lyme?   The problem is I want this Alternative Alopathic treatment, the Wheldon protocol.  I provided much print out, the letter adapted to a non-ms expression of CPni and spoke of telephone calls could be placed to DrStratton and his receptivity and email conrrespondence with Dr Wheldon. My goal was several fold, one to find someone north of Philadelphia, within a reasonable max of 5 hour drive from my home area to send other folks to as well as for myself.  He did not seem to get the seriousness of CPn in itself from my assessment of his feedback and I go with my personal readings fo situations.  They are building a lyme and coinfection practice, it is clear from the detail in the office.  I believe that I had CPn well before any Lyme came into my life.  It may have tipped the scale but I have researched CAPi and it is robust, cost effective, and covers many many bases.  Brilliant as I have said before.

So the consultants suggestion was that I put my C.Pn. positive active and chronic disease on hold for mild elevation of liver enzymes while the balance of the metabolic panel is completely negative, to prove that it is Celiac or r/o all the other very unlikely causes.

Go to a Hepatologist cause that would be the only MD who might know about the connection with Celiac Disease.  This provider did not mention Celiac the internet revealed that news to me.  When I asked about possible causes, and saying no that is not my lifestyle etc to those causes.

To stop now is to ultimately waste more time, I have been on this since May 07.  And if I do have any of the other causes of elevation they are not treatable anyway.   It has been said her before this is the infection of my lifetime. 

I have been 6 weeks on backed off Doxy now at 200 mg/day.  At 400 mg Doxy for 12 week there was some major kill off. NACi did not neutralized that. 

Could the Glutatione that I took several days prior to last lab draw impact the ALT? The AST did not change at all still minimally elevated 8 weeks after the first drawer.  

Could the 4 Gm of Betaine (one dose) that did such a good job of mimicing a pulse have an effect on the values two full weeks afterward?

Is there a practitioner in New England that really understands the seriousness of C.Pn.

I realize that I am mostly talking out loud to myself.  I have been round and round on this for the past week. 

Oh to add to the picture is that on a previous full abdomenal both without and with contrast CAT SCAN in July 06 I had numerous "simple" liver cysts noted approx 10 mm - numerous  and the number was not bothered to be counted since it Scan was relate to the congenital absense of my left kidney which is as I had told the told the urologist has been absent from birth and found incidentally on ultrasound some 20 years ago.  And yes, because I have only one kidney I have only one adrenal gland so per lab testingi this year I am a bit hypo aderenal because of this I would speculate and that just another reason for elevated liver enzymes which was also include in the list of unexplained reasons for elevations !

I would be happy to recieve personal mail regarding any feedback.  This question one that is much too political to touch with a 10 foot pole out here in plain view on the net!

Louise CFSi. CPn postitve, Bb(Borrelia B.)postive. 

CAP 6/24/07 Initial Doxy and NAC started.

10/31/07 Macrolide Abxi. added to Doxy and NAC.

11/3/07 Doxy 100mg BID, Macrolide 150mg BID, NAC600mg BID

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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}

Louise, I may have missed something, but here is my take on this: you are cpni positive and thinking of stopping abxi and trying "something else". You have been doing this for some months without much change, so maybe it is not "working for you"? This is to treat a bug you are positive for and it takes a long time. This bug would appreciate what you are comtemplating. While you are comtemplatong, don't forget your abxi and supps.

 

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

I agree that the cpni would be most relieved if Louise would quit abxi. Louise, is there some reason you cannot add whatever you are contemplating to the abxi protocol rather than in place of the abx protocol?

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

Hi Rica, I agree with you completely.  No the new provider is suggesting some tweaking of the CAPi protocol and is reacting to mildly elevated Liver Enzymes from what I have been able to learn so far.  I have been doing at first a huge mega dose of Doxyi 400 mg for three months per RX had lots of confirmation that die off was happening and cut back for the 4th month to 200 mg Doxy and have taken NACi and Supplement and want to continue and this treatment is not so easy to sell.  So I have some mildly eleveated liver enzymes elevated and the balance of the metabolic profile is negative and my kidney seems OK and It is being suggested to me that I now stop and go on Milk thistle because the provider is not comfortable with the elevated results.  And just now I am learning more and have decided that this is the infection of my life and to stop may not be my best option at this point.    And of course I an once again atypical!!!!    For once I would just like to do something in a way that normal people do!  Thanks for your concern and support.  Seems to me I learned somewhere long ago that the liver is a very regenerative organ.  Or is that my wishful thinking?  Ugh!!!!

Yes I know the disclaimer is that I should find a good doctor that know about all of my parts and conditions. 

The fact is I am a healthy person with a SIBI process.  I am choosing to believe that.

Louise CFSi. CPn postitve, Bb(Borrelia B.)postive. Northeastern US.

CAP 6/24/07 Initial Doxy and NAC started.

10/31/07 Macrolide Abxi. added to Doxy and NAC.

11/3/07 Doxy 100mg BID, Macrolide 150mg BID, NAC600mg BID

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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}

Louise concurs that that atypical bacteria of the C.Pn. variety would be most joyous to be freed to roam and ramble and reestablish itself hither and thither.

I am not convinced that a Milk Thistle vacation is the answer for my situation.   The ND "Lyme Specialist" is not comfortable with writing any more Rx for any of the CAPi antibaterials without a six week layoff and repair with Milk Thistle.   

The treatment for Celiac Disease is eat NO WHEAT, I was religiously abstinent for 10year. I do ingest a very modest amount of wheat at this point so that will change again back to the completely gluten free existence. As for most of the other possible causes there is no really restorative treatments but the advice to the avoidance of medications, alcohol, etc.   I am a bit adverse to considering Milk Thistle it is infact as a concentrate a drug! Got to pick and choose my drugs wisely it seems.

Louise

Louise CFSi. CPn postitve, Bb(Borrelia B.)postive. 

CAP 6/24/07 Initial Doxyi and NACi started.

10/31/07 Macrolide Abxi. added to Doxy and NAC.

11/3/07 Doxy 100mg BID, Macrolide 150mg BID, NAC600mg BID

___________________________________________________________

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}

Louise- the treatment for Celiac disease is to avoid gluten, not wheat per se. From my limited knowledge, even tiny amounts of gluten can trigger the autoimmune reactions.

Most of the doc's using CAPi for Cpni routinely pause the CAP when liver enzymes go up. This is a long term treatment, and better to pause for a few weeks and let your liver recover than end up with both Cpn and liver failure.  If this is only a mild elevation of enzymes, then you should be able to correct in a shourt period of time. You can also get strict on the gluten-free and see if that helps too. No way to know what might have caused it, but can't ignore it.

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

A motto, not an aspiration: "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