jeanneroz's blog

The Elephant(s) in My Room – Blog Update

I haven't posted much and my last blog update was in May of this year. I wish the reasons were because I was enjoying a recovery and had my health back, but it's not.   I now join the ranks of some of the others here who came to this site about the time I did.  

 

Last week I had Bioenergetic Testing done which indicated I have:  Bartonella Henselae, Babesia Nosodes, Mycoplasma Fermentes, Borrelia Burgdorferi and high levels of systemic yeast (as well as EBVi, HHV-6 and CPNi) -- "my elephants" and reasons for not recovering. 

 

Decorum on a Forum

 

Decorum on a Forum

I have been reflecting on this topic for some time as I participate on this site. (I have been a member here since 2007.)  Some activity over the last several months, and as of late, prompts me to express my feelings here in my blog

We are a diverse group and come here to participate for many different reasons - some out fear, some to confirm their sanity, others frustration with doctors, others to find support, and to ask questions.  This IS the ONLY dedicated CPNi support site.   It was my lifeline when I was so very, very ill and still is one of the few places one can go to have comrades who understand what this process is about.   

3 Years, 8 Months, 2 weeks and 2 days.....(Revised 2/14/2011)

It has been 3 years, 8 months, 2 weeks and 2 days since I started CAPi<i<.   I have reached a point, not by choice, but rather by necessity, that I have had to back off the protocol for a while. 

Time to Add Rifampin?

What started as a severe sinus problem is now in my chest (again).  I am still having debilitating malaise, deep chest coughing, running a low grade fever off and on.  I have been taking Tinii continuously now for a little over a month (as well as Doxyi and Roxi).  I am still doing the neti pot, Mucinex (seems to help), nasal sprays, etc.   I still have what appears to be swelling in the mandibular area of my face.

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Hering's Law of Cure

I know nothing of the credibility of this particular source  but the homeopathic philosophy seems to be applicable as I reflect on going through this process so far. 

InterFase Plus and Biofilms

Last Wednesday, I decided to start the InterFase Plus for the treatment of biofilms.  I was curious to see what, if any, type of reaction I would have.  The recommended dosage (on the bottle) is 2-8 capsules per day.   Additionally, I have a schedule obtained from an autism parent given to her by the autism doc, Dr. McCandless, but it is too agressive IMOi, for me so I decided to only take it on M/W/F,  the days I take both Azith and Doxyi. (I switched back to Azith, from Roxi January 2010). 

Pulse #12 Culminated with an ER Visit

For my records here….. I started pulse #12 on Sunday, October 4th.  I have been tolerating my pulses (for the most part) decently.   The first 2 days the left side of my head felt clogged with cement.  My left ear, eye, lymph nodes, sinus were painful.  Right knee painful.   Total inability to concentrate... first 3 days I felt as if I were in "suspended animation" and all I really did was “zone out” and stay in the house.

Trying Roxi instead of Azith

This is day two of switching from Azith to Roxi.  I have a few months' supply and thought I would switch out one of my ABXi since I have been on this protocol for about 2.5 years.   My CPNi titers (in June of this year) are still very high.

I really didn't think there would be any noticable change, but today I am having definite endotoxini reactions (red, scratchy eyes),inflammationi ( my knees and hips are stiff), my legs feel like mud and it's more difficult to walk today.  Extreme fatigue.

Definitely notice Roxi doesn't seem to have the immunomodulatory effect that Azith does for me (so far anyway).

JeanneRoz  

Backsliding...

I am in a quandry.  I am concerned I may be developing a resistance to doxyi 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 cpni 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???

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?

For the past week I have been struggling with what appears to feel like a chest cold (or those  CPNi 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 CAPi.  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)

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)

Addendum - Pulse #1 - Day 21

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 BIDi

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.

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