jeanneroz's blog
Submitted by jeanneroz on Sun, 2008-06-01 20:24.
Blogging for the record.... My second pulse was 1-250 mg of Tinii for 4 days.... May 24-27, 2008 1. First two days I noticed an increase in energy 2. Day 3 my LEFT knee and hip became painful and stiff. Up until this point I have not experienced problems with my left leg, it's been all in my right knee and sacriliac . I could barely walk and was unable to go up or down stairs. I still have major problems with my right leg - knee (can't squat or bend, difficulty walking up stairs.) 2. Again increase in coughing... as well as chest congestion - benedryl helps 3. Red rimmed/watery eyes. 4. Third day I had a really bad headache (and I usually don't get headaches)
Submitted by jeanneroz on Wed, 2008-05-07 20:03.
Addendum to my blog. It's day 21 post pulse. I am depressed and sick and tired of being sick and tired. I guess it's finally hit. I only took 1- 250 mg of Tindamax for 2 days. Nothing really happened until now. I was experiencing pelvic/gut pain but kept writing it off to the pulse. so I then went the route of gyn and urologist which has led me to: 1) I have a bladder infection -- was prescribed Nitrofurantoin 100 mg BID. 2) Per gyn - I have BV and gyn wants me to use Clindesse -- I have not administered it yet as I am concerned I'll be on antibiotic overload and could possibly cause another pulse or yeasst. I have no idea how it would interact with CPNi.
Submitted by jeanneroz on Sat, 2008-04-19 15:15.
Haven't been posting lately-- not much to note re improvements (or I should say lack of -- but continue onward!) . I still have extreme CFSi and FM which keeps me physically down most of the week... no driving, shopping, housework, etc. Frustrating, expecially now that the weather is warm. One of the few positives (right now anyway) after being on the dual CAPi for a year is that my body no longer has that "sick, sick" feeling.... just the extreme fatigue. I do have occasional days that pop up maybe once a month ... "pseudo normalcy".
Submitted by jeanneroz on Fri, 2008-03-07 16:19.
Sunday night I went to the emergency room with severe abdominal pain (upper/lower left quadrant, front and back – [as an aside, I have experienced pain on my left side since almost the beginning of my ABXi in April of last year –2007]. I kept contributing the discomfort to possibly die off and/or my spleen. My dr. could never find anything on x-rays or a cat scan, so I just kept plodding along, as it was not intolerable.
Submitted by jeanneroz on Tue, 2007-12-18 11:34.
I haven’t posted for a while, but as you may have noticed I still visit and peruse the site and throw in my occasional two cents worth! I would like to say I have improved so much, am back to work, have a life.. but that’s not the case. I am one of those “sickies” that started this protocol at my worst, added antibioticsi which made me even MORE sick (die off, porphyria and endotoxinsi) – it’s been a long 9 months.
Submitted by jeanneroz on Mon, 2007-11-05 13:28.
a miniscule marker in my treatment, but I have NEVER in my life had a coldsore..... and I now have one that appeared this morning out of nowhere. Guess the antibiotic's are finding the infectionsi in my body! Last week, I was getting small, inflammed red bumps (looked like a pimple coming on) randomly around my mouth... just a few. Past two weeks have been EXTREMELY difficult -- my fatigue and weakness have me down almost all day.... I am having "wiggy" porphyric episodes again (waves of anxiety... chest pain, coughing), which seem to dissipate with sublingual b12 and Vit C (as long as I stay in bed and don't move around). My lymph nodes in my left arm, shoulder and neck are swollen and very tender....
Submitted by jeanneroz on Mon, 2007-10-29 14:15.
Rant… I’m getting a bit discouraged. My fatigue is worse – I am sleeping 11-16 hours per day. If I force myself to awaken with an alarm, I am pretty much toast the rest of the day (even with naps).
Submitted by jeanneroz on Sat, 2007-09-29 12:32.
Actually, 6 months and 2 days... the 27th of September marked six months of my being on CAPi. As Ruth mentioned in a previous post about herself, I am no longer a newbie! I am now reading posts of those coming on board, reflecting on my past experiences! It's a strange feeling indeed -- firstly, to realize how many of us there are "out there". It is wonderful that people are finding this website -- the word is getting out. As I read of those coming on board it's a curiosity to gauge the different levels of tolerance the individuals have. Some are able to ramp up on the meds quite quickly and others, like me, struggle to build up to each level. I guess this is also indicative of our unique immunei systems and the CPNi load each of us carries.
Submitted by jeanneroz on Sat, 2007-09-08 16:45.
End of My 3rd Month Update: I am now beginning my 4th month of ABXi and felt I should blog what has been happening. I finally reached the full 200 mg of Doxyi/day, the week of July 8th and was feeling pretty decent actually. I had 2 weeks of feeling normal "so to speak". Not "whispers" as you call them, but they were shouts!!!
Submitted by jeanneroz on Sun, 2007-08-19 11:44.
This week has been one of depression/frustration.... probably due to my impatience and lack of control. But also because I don't understand what is going on with my body and this bacteria! Family members keep looking at me at asking "when are you going to get better"... I stopped trying to explain. Having to use a wheelchair this week -- I've experienced the stares from people and small children and now understand what those of you with MSi must endure from society.
Submitted by jeanneroz on Tue, 2007-06-19 10:29.
I've been rather silent on the site the past week or so, in that, I have had some negative situations occurring in my life that have brought me down physically and mentally. (all pertaining to my work/insurance situation  ) This doesn't help my illness or state of mind! But I would like to add a great big THANKS to the cheerleader on this site who keeps encouraging me! (and reminded me
Submitted by jeanneroz on Mon, 2007-06-04 14:46.
.. well my "what to do" has changed to "this is what I've done"... thanks to all of you who previously answered and supported me. Since my last post, I started doxyi 100mg - 1/day for a week. Everything went fine and I actually started to feel better until about the end of the week. I became VERY tired on Thursday then Friday, okay. By Saturday, I was running a low-grade fever and I could tell my body was needing more antibiotic (is that possible?)
Submitted by jeanneroz on Sat, 2007-05-26 14:31.
.. having a pity party today. It's Memorial Day weekend here in the US... beautiful, sunny day, and I can barely walk around the yard, let alone do anything physical, even driving a car. My husband is working overtime and I am home alone... not a good day. YET, I AM alive, just feeling a bit depressed and not knowing which way to go.
Submitted by jeanneroz on Fri, 2007-05-18 11:52.
.. this is may 18, 2007, I took my second dose of azith on Wed.... I have pretty much been in "horizontal" mode since. On Thursday, I actually awoke refreshed, but by about 10 AM, after showering, I could barely move. My fatigue was worse than I have yet experienced... my breathing was very labored, and my body would just not "go". (could the hot shower have triggered?)
Submitted by jeanneroz on Tue, 2007-05-01 21:02.
Hello to everyone.. I have been lurking on this site for about two weeks now and finally thought I should introduce myself.... I have been ill now for over two months (this time) and it seems to be getting worse, not better. I literally am not able to be out of bed for more than a couple of hours a day... November of 06 I came down with bronchitis, literally in bed for two months, back to work for 2 months and then BAM! down again on March 10th of 07.. has been downhill since. After testing for CMV, HV6, EBVi, and others, my doctor finally determined I have CPNi, I did have mono at some, and tested positive for HV6 virus and EBV.
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