Recently diagnosed

Submitted by Marilyn on Sun, 2005-12-25 19:11

My husband was recently diagnosed with Cpn after udergoing a battery of tests for the symptoms he was having, i.e. fever, chills, uncontrollable coughing, mediastinal inflammation, feeling as if he had an unbelievable cold & flu.  He is currently only taking Doxcycline, 100mg x 2 a day, which he has tolerated from the beginning.  However, in reading the info on this website, it seems he might benefit from a multi-antibiotic therapy (I think his count (?) is really high).  If he hadn't just gotten out of the hospital after a week, I would consider readmitting him because he feels so sick, and this from a guy who was totally in shape, jogging & weight training just weeks ago.  His symptoms generally get worse at night (wheezing, shortness of breath, coughing, etc).  Additionally, I was wondering if anyone has ever heard of Cpn causing mediastinitis?

Small med changes, and a thought?

Submitted by mswillow on Sun, 2005-12-25 15:20

OK, I dropped the tryptophan, and added NAC, 500mg, and DHEA, 25mg, both taken at night. I also take one "non-aspirin" pain pill if needed when my shoulder gets too sore.

Got a silly thought here: Has anybody else had gingivitis? I noticed that, every time I got IV steroids, my gums quit bleeding. That was part of why I was taking so many anti-inflammatories - I could judge when the dose was high enough each time I brushed my teeth, and that told me when I'd hit the level of the steroids. Chalk that up as an experiment with inconclusive results :-/

However, all the antibiotics I'm now on have completely stopped my gingivitis, and my MS is improving. Could there be a connection between gum disease and MS?

It's good to feel bad.

Submitted by mswillow on Fri, 2005-12-23 03:17

After reviewing this site, I've changed from 400mg Flagyl twice a day, to 400mg Flagyl three times a day. Now, my unusable shoulder aches all day, instead of only in the morning and night. My nose is also alternating between stuffy and runny.

These are good things. They're a way to know that te ABx are working. Another good sign is that I'm constantly improving, a little each day. I can flex my toes, slightly. I can type (still left-handed only) almost all day with few pauses. I can get my evening pills together in nearly the same time as my caregiver takes. Slowly but surely, I'm improving.

Also, stuff to add to my medecine list: glucosamine 750mg and tryptophan 50mg. I'll be adding DHEA 25mg soon, and NAC as well - have to have Vikki get those bottles out again. I'm also taking 1mg 17beta estradiol daily, and 20mg Prevacid, which has helped my swallowing problems considerably.

Finished at 7 Days of Tinidazole

Submitted by Jim K on Wed, 2005-12-21 15:45

Finished this Tini pulse after 7 days of it. Thought I was going to do at least a couple more days but seemed to reach a personal limit of feeling "enough!"Interestingly, I had significantly less joint ache this round, no sacroilliac pain, no hip joint pain, only mild aching in knees and ankles. Mostly I just felt tired, a little sick, little appetite and kind of generally crummy. This is a far cry from the misery and pain I've had on earlier pulses, but did convince me that pulsing is the right thing for me-- a body needs to recover from this stuff! It also convinced me that not only do we need to bring the cryptic load down to tolerate this better, and slowly  over time, but that there seems to be some optimal tissue concentration level reached after about 3-5 days which, at least by subjective symptoms, seems to reach deeper layers of tissue like joints, deep muscle layers and so on. I suspect this is true for nervous tissue as well (recall reading an abstract on metronidazole needing 3-4 days to reach adequate killing concentrations in either brain or cerebrospinal fluid).

does Cpn explain my symptoms - or shoud I look out for some other reasons?

Submitted by elisa on Mon, 2005-12-19 04:01

to start with, i am so happy that this page exists. it is one of the best (technically functioning and emotionally supporting) i have ever seen.yet i still don't know whether i actually "belong" here as my symptoms are so different.All I know is that* 2 years ago i had a "very bad cold" with "very heavy bronchitis" (ugly stuff coming op with the cough) - did not see a doctor then, cured it by myself... * and during and EVER after this i have a pain in my neck and back, that did not go away even with the best manual medicine, shots, massages etc.* and  now for 3 months i feel chills on and off an generally feel cold easily* and my gallbladder is thick and has an inflammation for "reasons unknown"* and my blood work says I have Cpn (IgG 70 - not very much, but this was after 2 weeks of antibiotics already), no other type of chlamydia, and no other known virus* and that there is "moderate systemic activation of my cellular Immune system), IgM 335, activated T-cells 17. etc.* and that my gall bladder is only versy slowly getting better, if any at all, and the neckpain also is only slowly decreasing, after already 6 weeks of doxycycline, with  2 phases of azithromycin and metronidazol each.<!--break-->

Fighting the SPMS beast

Submitted by mswillow on Mon, 2005-12-19 03:08

Hi folks, I'm new here, having found this place from PlaintalkMS.org. There, I learned about C. Pneumonia, and it really hit home. See, most every year since I was 10, I've had walking pnuemonia, hacking, wheezing, feverish, achy, the whole nine yards, even as recently as two years ago. Seemed a likely culprit to me.

So, I've been taking the following:

doxycycline 100mg 2x/day
roxithromycin 150mg 2x/day
flagyl 400mg 2x/day
simvastatin 80mg 1x/day

I've been getting better, slowly but still, that's better than I had been. I have a looooooooooooong way to go.

Notes on NO and CPn: I had been doing massive doses of Non-steroidal Anti-Inflammatory Drugs, trying to prevent exacerbations. It worked, sort of. I didn't have what I knew as an exacerbation for about a year ... but I did continue losing ability, at a faster rate than before.

5th Day of the 5th Pulse

Submitted by Jim K on Sun, 2005-12-18 20:59

Okay, seems to hit at some point no matter what. Got to my 5th day on 1500mg of Tini and have felt great so far- a little toxic but more energy and more thinking ability. Had a high-brow intellectual conversation with my Professor brother in law, a great guy, and was able to sustain a high level abstract conversation-- been a couple of years since I could do that.

Then, 4 in the afternoon a big wave of generalized pain, fatigue, malaise (the French have all the best words for this kind of thing). By 7:30pm after dinner I felt like it was midnight and long past bed. Going to a hot bath and that now, and it's only 9:30.

My guess is after 5 days tissue concentrations are building up enough to reach some deeper levels of tissue where those cryptic bugs are embedded. First four days the rush of energy as mitochondrial mechanisms are freed up, now the toxic build up from the kill.

Stay flexible

Submitted by katman on Sat, 2005-12-17 07:50

This disease seems to choose an area of the body to concentrate on in its "pain of the month."  Last winter was my hips which no longer hurt.  Last summer my shoulders and neck became so painful that my range of motion became increasingly  restricted.  After many nights of sleeping on my back (I am a side-sleeper)  I can now sleep on my side again.  The horrible pains of my shoulder are pretty much gone but I have adhesions from curtailing my range of motion over many months. All this leads to my point- stay flexible.  Easy to say, but I have been working very hard on stretching (carefully!) my right arm which has become very inhibited in range of motion.  Now that I am more cognizant of these things, these pains are more easily differentiated from the daily pains of MS.

Into my 5th full pulse of Tinidazole

Submitted by Jim K on Fri, 2005-12-16 22:34

Into my 4th day of tini, this will be my 5th full pulse (at least 5 days full dose--1500mg per day). So far I'm generally achey, but had distinct bursts of energy, lessening brain fog, and ankle achiness. Not the sacroiliac and back pain, and less knee pain than last pulse. So some things are getting easier. It may also be helping that I'm taking a low dose of Benicar (20mg) about every other day. I'll stay with this tini pulse as long as I feel it's useful. Last time I got to 10 days before feeling too loggy with toxicity. We'll see how it goes.

Not cold anymore

Submitted by katman on Fri, 2005-12-16 11:00

I had not planned on witing an entry, but with all the talk of being cold, I had to.  For several years, I have been increasingly cold below 50 F. My standard  outside clothing has been t-shirt, turtleneck, sweatshirt, snow suit and a down jacket and I was STILL cold.  This winter, after 15 months on abx, I wear t-shirt, turtleneck, and sweatshirt.  When it has been in the 20's and 30's I wore a jacket but took it off in the barn,  which is not heated.  This is all absolutely incredible!.  My boots are not out of the closet and I have worn my sneakers every day.  On a philosophical note, we are so attuned to instant everything that we can't seem to comprehend that this is NOT overnight.  As for my stopping abx, I am still improving at such a rate that I will wait for a "sign" that it is time to change something.  My conviction is total that I have a chance (maybe one) to get some of me back.  I will do everything possible not to jeopardize that, and I want to see how much.