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EDSS 6.7 to 2.5

MSi lesions NEVER go away.  This was said to me yesterday by my neurologist who at the same visit said "If you need me, call".  He also said "No MRI- there is no indication for one"  Why is that ?  "I don't get MRIs just because a patient asks for one".   Why do you think you are better?  The antibioticsi, I said.  Silence and avoidance of eye contact.  (Sound familiar?).  "Have you ever seen this?"  I asked.   Finally I asked for the third time and sat staring.  No, was the reply.  Also, I have moved UP on the EDSSi scale from "at least" 6.7 to 2.5.  I said I have been up running around for 10 hours. 

I am  PPMSi.  I have had ONE attack and it has lasted 10 years.  I have been fighting back very hard  for over 15 months now.  Avonex is in my past which was probably the biggest shock for my neurologist.  While writing he said distractedly " Of course, you are taking your Avonex" Period, not a question mark.  I said "No, not for two weeks."  His look said that couldn't possibly be. He looked back and said " But in Sept. 2004, you said you felt great."  I said "Yes, with Avonex and steroids"

Dealing with the aftermath

Having beating ReA Reactive Arthritis (Reiters Syndrome) with the aid of Cipro, Biaxin, Zirto, Pristeinmycine, etc. I think I must have used most abxi. Cipro and Biaxin were fundemental for me however. Anyway Having beating the aggressive arthritis, and the mamouth of other symptoms, (whole body was infected and organs were taking a pounding), I have been struggling on almost halfpar. I have continued to suffer with colon problems, eye trouble, low immunity, CFSi, anixity, etc
 
Recently I started a course of Antifungals. Fungizone (oral) first, and a month after adding 250mg Lamisil a day. Now 2 months in I can attest that all my symptoms are improving. I am gaining ground daily and I sware that its a profound effect.
 
I would strongly encourage others that have been using abxi to consider antifungals too. 
 
I have never made much progress with Difulcan, and cannot say it worked for me (in the small doses I tried), the problem I see with Difulcan is the price.

Recently diagnosed

My husband was recently diagnosed with Cpni after udergoing a battery of tests for the symptoms he was having, i.e. fever, chills, uncontrollable coughing, mediastinal inflammationi, 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?

OK, I dropped the tryptophan, and added NACi, 500mg, and DHEAi, 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 antibioticsi 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.

After reviewing this site, I've changed from 400mg Flagyli 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 DHEAi 25mg soon, and NACi 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

Finished this Tinii 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 metronidazolei 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?

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 inflammationi for "reasons unknown"
* and my blood work says I have Cpni (IgGi 70 - not very much, but this was after 2 weeks of antibioticsi already), no other type of chlamydia, and no other known virus
* and that there is "moderate systemic activation of my cellular Immunei 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

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 flagyli 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 CPni: 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

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

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

Into my 4th day of tinii, 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

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 abxi, 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 abxi, 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.

Sarah's Unillustrated Blog

Please read this very carefully.

I mentioned in my first blog  http://www.cpnhelp.org/?q=sarahs_illustrated_blog#comment< that there was much I didn't remember about the early days of my treatment.  I have never been a terribly good record keeper, but I did start out keeping a journal.  For a few days I even added to this daily, but soon I could go for a couple of weeks without adding anything.  This period rapidly became longer and then eventually I ditched it all, probably in a fit of pique.  I had no intention then of taking part in anything like ThisisMS or this site.  If I had I might have been more circumspect.  In one way it is good that I even now only remember something when someone experiences a similar reaction themselves, because if I had a list of absolutely everything and had put it all down, then I might have risked putting ideas into someone's head.  It is better if someone new to the treatment suddenly comments about various things  -  I'm going carefully here lest I say something that hasn't been mentioned yet!  Let's take one of the most recent comments on the board about a desire for hot food: if someone has not experienced that at all, they might feel that they are not succeeding!  Then there are Karen's blue toes, or my early experience of putting my feet down to the ground when I got out of bed when the weather first turned wintry and feeling the cold floorboards, one toe turning blue and the toe nail actually coming off.  It has grown back perfectly now, by the way!
A very important thing that I want to mention here, though, is something that I only realised a few days ago when talking to someone who started antibioticsi this year, back in Early August, nearly exactly on the same date as me two years previously.  This person is just about to start his third pulse of tinidazole, timed to finish on December 25th and yet I have been saying that my only really severe reaction was during my third pulse.  It can't have been because I didn't experience it until February, so it must have been at least the fifth.  I think it is important to say this because many people are almost looking forward to feeling that something is happening yet will never experience the agonies that other people do and so might just think that they are failing somehow with the treatment, like with the ubiquitous Marshall Protocol, where if you don't go through purgatory and back several times over, you are made to feel like you failing.  Its not like that, if you don't have a build up of CPn in your limbs, you won't feel it there.  I felt nothing in the first pulse: I had already gone through the true herxheimer "almost going down with 'flu"  feeling when starting on the doxycline. It was shortly after this that I nearly gave up the treatment because we both thought it wasn't working.  Remember I was David's first chronic CPn patient.

Improved

Improved at neuros office!!!!!

 

I went in for my first visit since starting the abxi<i<i< in sept.  My neuroi< had to admit that my leg strength has improved.  Although he told me that it was from doing physical therapy, but when I said I have been doing pt for the last 2 years, he said nothing.  He is not the one prescribing the abx for me.  He had a smirk on his face which I knew meant....She thinks shes getting better from the abx. 

 

But on the other hand, my raynauds is worse than ever.  My pinkie toes are both blue.  Has anyone had this get worse while first on abx?  I have talked with Sarah and she said this did happen to her.

FIrst Flagyl

Well, gosh inquiring minds want to know how goes it with me so I am here to oblige. Thank you friends for the kind interest.

Last evening I took my first flagyl dose, one pill one time (250). Oh yuck! Blech! Pooey! Tastes terrible! I will place future ones in 000 capsules (ask the pharmacist for "triple ought capsules" or you may find them in your health food store, often for less).

I spent the night feeling hot then cold and nauseous, and I slept late. When I got up my right leg would not lift but dragged the floor with every step lightly (because I can lift it a tiny bit but not enough to clear) This is worse than usual. I drank a lot of water and took a bunch of vitamin c also as a morning activity along with my supplementsi. Then I felt better.

On the energy angle, I spent the weekend with my sister and we took the dogs to the dog parks, meaning I "walked" with a cane about 1/4 mile to get to the field to throw things for my border collie. I walked poorly, but I did it. Interestingly, I recovered fairly quickly and was able to "walk", again badly and with my cane, to go shopping with her. I certainly did not feel a whole lot more functional. In fact, I kept thinking "Oh crumb this is hard and I am not that functional. That darn leg! Still floppy. Maybe I'm not better" But in reality for the last year I have been going to my tiny local mall if something was necessary, parking at the disability closest to the item needed (like the Penney's Shoe door) then getting it and leaving. Why? Because I'm so wobbly I might fall. Even 2 months ago I went and got my husband shoes and needed to go up the escalator and get a new espresso machine but bailed as I was too wobbly to want to do it. Now this weekend I wobbled with my cane for 4 hours from thither to yon. The walking was bad, but I had enough energy to do it, so this is actually a big improvement even though I walked very badly and at the end, my right leg was so weak it was essentially non functional, every step the foot dangling like a floppy fish on the end of my leg, but I was still feeling OK like all I needed was to rest a bit and I'd be fine. I managed to purchase a few stylish duds also. I told my Sister it's been years since I felt like I was wearing something other than "challenged person's easy wardrobe" AKA sweats or stretchy stuff, and it feels good to have one spiffy outfit to wear should the need for dress up come along.

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