Cpnhelp.org - Chlamydia Pneumoniae Treatment

Quite recently Jim suggested that the action of the antibioticsi on Cpni might cause quite a few of our immunei system cells to die, leaving us open to viral infectionsi.  This might explain your symptoms.   Also RA (I know nothing about it so this is purely speculation) may be the result of the action of the antibotics on the cpn in your joints.  Alternatively it might not be RA but an infection in the joints caused by a virus...  

I have not suffered anything like the terrible pains you describe but there have been times when I have had pains in hips, knees, ankles, toes, fingers and wrists which have laid me low for a couple of weeks, some of them for a couple of months.   These were not symptoms I had experienced before starting the treatment.   I did have some lower back pain but strangely enough this did get better before the other symptoms showed up.

 As Jim often says: go figure...

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

Jeanne,
you and I seem to be CAPi buddies - we both started around the same time. It sounds very much like reactive arthritis caused by CPni. This was actually one of my major symptoms before I started abxi. Onset was very sudden and agressive. The RAi went away very quickly in my case with abxi treatment (probably the one big success of the CAP I can point to).

In my case the RA was triggered by various immunei modulating supplementsi. To this day if I take too much vitamin C I'll start getting RA symptoms again.

I don't agree with the viral theory - all the literature I've read on RA is that it is triggered by bacteria (e.g. work of Dr Brown and the Road back foundation). CPn is a major cause of RA.

It is also interesting this started mid-November when I changed to taking the Azith (250 mg) on M/W/F. I never had this problem taking 125 mg of Azith DAILY

Might be a stupid question - but why don't you go back to taking 125mg Azith daily? Jim talked about Azith taken daily possibly acting as an immunomodulator - maybe it is helping your RA that way.

Also have you added or removed any supplementsi from your schedule? For me a couple of supplements will trigger my RA, including too much vitamin C and also DHEAi.

Also you might want to experiment with other antibiotics - minoi as you mention. Also Roxi might be worth trying. I would try and combat the RA with the anti-RB abx (doxyi, mino, azithro, roxi etc), rather than relying on the pulsed ones. Relying on pulsed abx for symptom relief is not a good idea IMHOi.

I feel guilty complaining because many of the newest people (Cara, April, others) are more ill than I in the "big picture"

Believe me you have nothing to feel guilty about! Your symptoms sound pretty serious to me. My guess is that it can probably be easily fixed too with enough experimenting.

garcia.

CFSi since 2001. Infected CPn Jan 2006. Started CAP March 2007.
Currently: Roxi+Doxy. 4 Pulses done. Welchol 1xday. Sauna every other day.

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Hunter: Don't think - experiment

Hi Jeanne,

yes I agree with the others above about getting to the bacteria in your joints. 

I have Famvir waiting in the wings for times when I know the viruses could be too strong for my immunei system at the time.  I usually get tingling sensations in my lips.  For the most part, so far, I am able to keep this in check with my daily supplementation of L Lysine.  If I wasn't doing either the Famvir or the L Lysine, I would be a huge oozing lip sore regularly.

We are no strangers to how this bacteria & viruses can rob you of your life, in the meantime; eye on the prize.

Merry Christ Mass

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 1.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 12-3-07 4th pulse 1 X 375 mg 3day

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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#14 1000 mg X 5 days 9-19-08

 Wow. Some good responses already here! Was your reactive RAi measurable in some kind of blood test like sed rate? Or was it diagnosed on symptoms? I'm not really familiar with how that one goes. If sed rates have gone up, then that may be a different thing than symptomatic joint pain, even though it is disabling pain.

I do know that I had a lot of joint pain from the first year on the CAPi, and especially so on pulses. If your joints are a big locus of Cpni, you'll get big time reactions. Garcia's comments are very interesting, especially about immunei boosting supplementsi aggravating his symptoms, so this sounds like possibilities to look into for you Jeanne. I know some supplementsi used to make me feel worse because of immune stimulation, but can't recall which they were! Your experience with the daily Azith (by the way, I tried it for a month, but no noticeable diff for me) suggests you need more immunomodulatory abxi. Certainly minocycline has a rep for this, hence it's common use in RA, and Roxyi as well.

CAP for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 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

My sister has reactive arthritis due to mycoplasma. Have you been tested for mycoplasma? my doc says that mycoplasma tends to gravitate more to joints, connective tissue.  I think Jim brings up a good point.  Is the reactive arthritis diagnosis based upon symtpoms or blood work? for my sister,  her sed rate and ana were high.   

Mphs, TN. CFSi, hypoT (Hashimotos), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. 6/26/07- CPNi Titer 1:256 (normal 1:16); Presently on NACi 2400mg/day, doxyi 100-2xday, azith 250 mg m/w/f, and pulsing w/flagyli. also taking estriol, progest

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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<

Jeanne, Something that comes to mind for me, sparked by what Sharon has said is that some intracellulari parasitic bacteria in addition to CPni are not seen well prior to Abxi tx. I know this is true for Borellia (Lyme) that sometimes an individual will be given a course of say Doxyi for a month or so and then tested for titers, with Borellia specifically the Western Blot often will be provoked ( so to speak) into showing the positive results. When you had your early testing do you recall if it most of it was done prior to any antibiotics?

My CPn was postitive without any prior Abxi however my Borellia and the remainder of my complete infectionsi panel was drawn on my second blood draw 4 weeks after the start of my Doxy.

So my point is that the picture or lab studies could change as a result of your 9 months of abx Doxy and now Azythro. I regret that I have not studied the life cycle of the Mycoplasma P. like I have the Borellia B. and the Chlamydia P. and then there are those other stealth bacteria that some users report from time to time as being part of their situations.

Just some more food for thought.

Louise CFSi/ME. CPn posititve, Bb positive. Started CAPi 6/24/07 Doxy & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tinii Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.

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Louise  CFSi, CPN+/Bb+, Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphoria & Endotoxinsi PRN, Doxy100daily, Roxi300BID, Tinii 500mgBID pulses, VitD3-4000IU, Magnascent Iodine,{S.O.D.3/QD[KAL Brand], +Pyruvate 3.75G +SAM-e For Energy support

Thanks everyone for your responses, gives me some things to consider...

 I am aware this is all a result of the CNP, because nothing flared until I had been on the full dosage of the dual CAPi for a couple of months. The extreme pain and immobility began when I started dosing again with M/W/F Azith.   Definitely interesting/frustating why its hit my joints so terribly. So, yes, Michelle and Jim - "go figure"! :)  Never know where those darn bacteria are hiding!

I finally had to swallow my pride and have my husband push me in a wheel chair at the mall just to be able to get out of the house to try and get in the Christmas spirit as well as  some shopping done.  (I really do not get out much at all) I had a lump in my throat and tears came to my eyes when I got in it.  I am having some "acceptance" issues with all of this as well -- even if it is only temporary!  .. yeah, I know waa waa......  (Jim, what are the stages we go through?  I think I am in the ANGER stage) -- whoa look out in another week when I add the Tinii! I will be VENOMOUS!

 I was very athletic when I was young, and as for my sacroilliac, I injuried my back there about 3 years ago,  my wrists and thumb joints, from years of keyboarding (?) as well as my right knee "pushing off" from an office chair... some days I feel frozen from the waist down.... Ibuprofen eases the pain, but doesn't enable me to be real mobile. I am worse than the Tin Man.  I bounce off the doorsills and stumble up and down steps stiff-legged. Thankfully, I haven't fallen, LOL. 

Right now it is a diagnosis of symptoms, but I have to get my blood drawn (sed rate) and an x-ray done this week.  I had a sed rate done a couple of months ago and it was at the high end of normal... guess we'll see.  Personally, I am not one who, even if I went to a rheumatologist, would be willing to take what they probably would want to prescribe.  Just want to make sure I don't incur joint damage.

Sharon, I don't have any other bacteria except CPNi (no mycoplasma), but thank you for pointing that out.  I do have EBVi and HHV-6 .

Louise, my panel was drawn after I had taken 2 or 3 weeks of ABXi ... would that have been long enough for other potentials to have appeared?  Can't really afford to run the whole series again, but then with the protocol it shouldn't really matter. 

Garcia, (cap buddy  -- I''ve gone back to the Azith DAILY at 125 mg .... we'll see what happens.  Thanks for the heads up on the supplementsi.  One day when I was extremely bad I had taken  about 3 grams  of Vit C (about 3 grams)  I've read, too, that RA and other arthritis are caused by bacteria.

 Yes, Ruthie, eye on the prize

I'm trying to decide if I should (want) to add the Minoi (100MG /day) in addition to the Azith and Doxyi Since that is suppose to get into the tissues more.  Thoughts anyone? Would this be instead of the Doxy or could it be in addition to?  I couldn't find anything on the arthritis sites or Road back....

Again, thanks for listening and being here...

Be well and blessed,

Jeanneroz 

Jeanne ~CPN  4/2007; HHV6, EBV, CFIDS/FM- diagnosed '07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues (hypo); prior bronchitis/sinus problemsi. 200 mg/doxy daily & 250 mg AZITH M/W/F, supplement

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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. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup