jeanneroz's blog

First Pulse (finally) for the record..

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".  

Interruption of ABX – Waiting for Biopsies

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.

9 Months...and now Reactive Arthritis

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, porphyriai and endotoxinsi) – it’s been a long 9 months.

Darn Coldsore......

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....

Rant.....

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).

6 Month Milemarker on CAP

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.

End of Third Month Update

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!!!

Frustrated, Depressed -- Needing to Vent

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.

hmmm ... "well tolerated"

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 Yell ) 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

calm before the storm?

.. 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?) 

what to do, what to do....?

.. 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.

Second Dose Shutdown...

.. 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?)

New Here.. very ill and frustrated :( --but thankful I found this site!

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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