jeanneroz's blog

Backsliding...

Submitted by jeanneroz on Wed, 2009-01-14 22:53

I am in a quandry.  I am concerned I may be developing a resistance to doxy and/or azith, is that possible? Or could it just be time for me to mix it up?

 I am again very ill with severe bronchitis and/or cpn pneumoniae symptoms.  I am almost physically at the point I was in March of 2007 when I was first diagnosed (bed ridden, chest pain, deep bronchial coughing, very weak)  This is about the 3rd episode over the last 6 months (2nd within the past 2 months!)

In all honesty my improvements over the past year haven't been significant, other than a reduction in brain fog and a reduction in my FM symptoms.  As each month passes I keep adding to the mix..... I KNOW that is part of this process -- it just becomes more obvious how infected I must be.

Should I take the Amoxiciiliian???

Submitted by jeanneroz on Sat, 2008-12-13 13:19

My poor body is protesting again. Basically, I have been ill since November 3rd with a severe bout of bronchitis, almost as bad as when I first became ill in Nov. of 2006.

Doc told me to double up on my azith and take it daily -- which I did. I also became SEVERELY constipated being in bed most of the month. Was starting to have "spells", nausea other wiggy symtpoms, so I took milk of magnesia... I got relief but it also threw my colon into spasms. Luckily I had some hycosomine from a previous "spastic bladder" after a bladder scope. The drug helped the spasms which I am contining to have 2 weeks later. I continue to have nagging pain in left descending colon area and splenic flexure area.

Something Viral or different NAC?

Submitted by jeanneroz on Fri, 2008-10-24 10:35

For the past week I have been struggling with what appears to feel like a chest cold (or those  CPN elementary bodies are reactivated?)  This is such a strange feeling, in that, even though I have been "sick" with all the repercussions of the protocol, I haven't had anything like a cold, flu, or viral type illness since being on CAP.  I have been running a low grade fever, coughing and feeling very flu-like.  Considering I don't get out of the house much, if it is viral my husband probably brought it home.

Pulse 2...(five days post-pulse)

Submitted by jeanneroz on Sun, 2008-06-01 21:24

Blogging for the record....  My second pulse was  1-250 mg of Tini 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)

Addendum - Pulse #1 - Day 21

Submitted by jeanneroz on Wed, 2008-05-07 21:03

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 CPN.

First Pulse (finally) for the record..

Submitted by jeanneroz on Sat, 2008-04-19 16:15

Haven't been posting lately-- not much to note re improvements (or I should say lack of -- but  continue onward!) . I still have extreme CFS 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 CAP 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

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 ABX 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

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 antibiotics which made me even MORE sick (die off, porphyria and endotoxins) – it’s been a long 9 months.

Darn Coldsore......

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 infections 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.....

Submitted by jeanneroz on Mon, 2007-10-29 15:15
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).