Cpnhelp.org - Chlamydia Pneumoniae Treatment

Congratulations!   I started with Biaxin (like azith) and my head swam like I was drunk or something, I felt like I was on fire (stuck my head in the freezer in desperation), had severe bowel pain and diahrrea, among other things, and scared myself silly.  Stopped taking Biaxin immediately, took doxyi for one week (actually can't remember what happened with it, but I felt bad in general then, so it wouldn't have mattered much to me unless it was a lot worse.  I just know that it wasn't as bad as the Biaxin.)  Then I started the Biaxin again and had a less intense reaction.  I imagine if I had started with Doxy first, it would have given me a bigger jolt.

Best advice I can give is to read everyone's post to you (although you might have to wait until morning since it is late).  I know they will tell you the same thing they told me, and others, and I am now telling you.  Your reactions sound familiar, a lot like mine were to start (I'm Fibro and CFSi, too, btw), and strangely enough, probably a good reason to celebrate.  As others told me, if you didn't have a reaction, it wouldn't be working.  Reactions are a sign of progress.  Reactions also sometimes surprise you, when you think you aren't going to have any, but it hits you after a delay.  They get better, more familiar, less scary, less intense.   They used to scare me.  Now they just let me know my abxi are still working. And they gave way to improvement and feeling better and almost forgetting why I take them! 

I know others will tell you about taking supplementsi and mopping away reactions (or something or other related to them), but I'm not very good at remembering that stuff.  I know Raven said eat lots of blueberries so I went out and got bags of them and ate two bags at a time (and yes, they are expensive).  They seemed to help.  The mopping stuff does seem to help, so you might want to check out the stuff on this web site related to supplementsi.  And don't forget the supplements.  My best guess is that the reactions are worse without them. 

Also, I strangely found that I was able to exercise more, even when I was having reactions, and that if I did a little exercise, whatever I was up to, it helped me get rid of some of the overstimulated feeling.  I think someone else may have mentioned that it might help "wash" some of the "reaction type chemicals" out of our systems, although I think they said it more eloquently.  It's 2:53 am here and I have no business being up this late (not good for one's health, you know) and can't barely put together a sentence, much less make any sense.

Hope you get some good advice from others.

Reve'

Hope you feel better soon but give it some time. 

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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.

BTW, what felt like my falling apart syndrome came after my mild IBSi and fibro increased to fatigue and periodic flu symptoms and finally to sudden all over pelvic area pain including symptoms of interstitial cystitisi (which I noticed you started with) and painful bowel inflammationi.  I got sent from one specialist to another, with no one finding anything other than stupid stuff and inflammation.  Each one would say that I had this small thing or that, but nothing terrible other than inflamed tissue.  One said that sometimes people hurt in these places but no one knew why and all they could do would be to cut the nerves to those areas.  That didn't sound like a good idea to me.  No one ever even considered it could be infectious.

I accidentally figured out that abxi stopped the pain, and started asking for abxi everytime I started to hurt badly again.  My "alternative" doc, as I call him, was the only one who figured out that needing abx was the clue and, ironically, he was the only doc I had who hated to give abx.  In the end, all the other docs said I had taken enough abx, so I had to be cured.  I couldn't have any bugs still left in me by then!  But my alternative doc said, well, it looks like you need to take several abx! And then he said I was positive for multiple bugs. 

I'm still amazed that so many docs were sure I had no infection just because I took a few abx.  Shoot, I had a utii that was resistant to a host of abx, and I probably had that at the time, too, and no one tested me for it either.  They just said, oh, you took one or two or three abx, you won't have any more bugs to kill.  Or for the utii, they would give the "standard" abx and declare I was cured, but finally my alternative doc said to do a culture, and I still had the same uti, and it was resistant to every abx I had taken up until then. 

 Which reminds me, be sure to take probiotics (I take floraQ 2) daily, and you might need to take anti-yeast meds somtimes.  I figured out that yeast also seems to be the cause of what feels like bladder pain (or pain in that general area).  My doc figured that out, too, and after I took yeast meds and took the right abx for my uti, I finally got rid of my bladder pain.  The CAPi has greatly reduced the bowel pain and I have more energy. 

And have UTIs cultured to make sure you are using an abx they are resistant to.  Also, don't trust the litmus test (I don't know the official name).  My UTI was not showing up on that litmus test where they look for blood or white count or whatever, and I found out later that some uti infections don't show up on that test.  When I did the culture, it showed up.  I did the litmus test the same day, and it didn't show up.

Hope some of this might help.  Ignore the rest.  I'm pretty much babbling now.  I have to go to bed.

Finally, don't stay up late!  Ha!  I haven't stayed up this late in eons.  My doc said the number one most important thing for health above all else is to get enough sleep.  I guess I forgot tonight.

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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.

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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

Kelly~

Good luck starting the CAPi.   

I liked the description in your signature of "progressed to all over falling apart syndrome."    Doctors should have that for a diagnosis...."The All Over Falling Apart Syndrome."   Shoot, enough of us have that!!!!

Take care and hang tough....Timaca

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.

Hi Kelly.

That falling apart feeling which so many of us have with CFIDSi is described by Jim K here as GFAi syndrome - general falling apart.  FWIWi, I really thought my illness was not as "severe" but that is simply not the case.  There is evidence at this site that CAPi can be more problematic for us and some of us experience much more symptoms of secondary porphyriai.  

Reve makes sense to be sure to use the SP measures and the supplementsi.  Glad you're hear. 

You can find a chart which lists all the recommended supplements during a CAP's here.

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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

Thank you everyone for your comments. It feels nice to have people understand what you are talking about when I'm assuming my family and friends pretty much think i'm a nutcase at this point, although they would never let me know it :)

 Have meant to ask something re: yeast that Dr. Powell mentioned. He said to control yeast to start taking Biotin and Vitamin K. I thought that was interesting since I always pretty much hear to take just probiotics. I haven't been able to find much about Vit K and yeast online but I was a bit surprised since K is supposed to be a blood thickening agent and so many with CFSi are told they have "thick blood" already and that is part of their problem. 

Anyhow, just throwing those 2 supplementsi out there to see if anyone else takes them to control yeas, I know biotin is listed on the reccommended supplementsi, although I'm not sure the rationale behind it. Thanks again talk to you all soon. 

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Gearing up to starting abxi protocol from Dr. powell.

Initial diagnosis of Interstitial Cystitisi (july 06), progressed to all over falling apart syndrome within the past year. Current supplementsi/meds: sublingual B12, ursodiol, Niacini, NACi 1200 m

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

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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