Hello Cpnhelp Family, Much water has run under our bridge since the last update. We established an additional doctor/patient relationship with an integrative medicine MD in our area. We had divorced our internist, we were searching for a local doc to be our primary care physician, and it was time for our annual physicals late last year. The more urgent need, though, was to find a doc to give Steve IV antifungal treatments for his systemic candidiasis. It just so happened that we found a doctor who could take care of all those needs, and he was a CAP prescriber too (just in case we might ever need an alternate). BUT, he didn't take care of the problem we wanted him to treat in the way we had hoped.
Okay, while Christmas shopping, I spotted a far infra-red heater with a parabolic reflector that oscillates, swivels up and down, and operates at 400W and 800W...for $ 50.00. Right now I don't have the time or resources to attempt to construct a tent or enclosure of any kind, but I am doing something with it. For the past few nights, for several minutes I've been standing about 3' to 3-1/2' away from it and rotating when I begin to feel toasty on the side facing the heater...sort of like a rotisserie chicken. There's no danger of me breaking out in a sweat from this (I hate being too hot), so I know I'm not receiving any sweat benefit. But, I've noticed my mid and lower back and hips are feeling much less creaky a
Some of you have noticed that my presence on the site has been very thin lately. I work full-time, my workload has increased 3-fold, and my major CAP die-off symptom is fatigue. The main reason for my silence and scarcity, though, is that I have been spending most of my limited internet time investigating anything and everything to help Steve. He has been having a rough time of it for months now, and this episode-in-progress should be told.
It has been almost 5 months since Steve's last flagyl pulse. He hasn't missed a dose of doxycycline or azithromycin, though. For those who don't know, in addition to Cpn, Steve also has chronic Mycoplasma pneumoniae, Epstein-Barr virus, Cytomegalovirus, and HSV-1 chronic infections...and those are just the ones we know about. He also has a sluggish, leaky gut with gluten and casein sensitivities. Through urine testing on taking a provoking agent, he was also found to have a severe heavy metal burden. In this crowd, he is not unique. He is in a minority here of about 3, though, in that he is undergoing comprehensive treatment to address as many factors as possible that cause/contribute to the inflammation behind his chronic illness.
I've never heard of Arachnoiditis before, but after a little reading, it sounds like it belongs with our collection. Rather than being a separate condition/illness, I can't but wonder if Arachnoiditis is perhaps how Fibromyalgia starts for a subset of FM sufferers.
Lord, make me an instrument of your peace.
Where there is hatred, let me sow love;
Where there is injury, pardon;
Where there is doubt, faith;
Where there is despair, hope;
Where there is darkness, light;
And where there is sadness, joy.
Oh, Divine Master, grant that I may not so much seek to be consoled as to console;
To be understood as to understand;
To be loved as to love.
For it is in giving that we receive;
It is in pardoning that we are pardoned;
And it is in dying that we are born to eternal life.
If your Cpn history includes acute ear infections or sinusitis with stopped-up ears, the Cpn die-off while on the CAP may cause considerable ear inflammation. This can be caused by endotoxins released from the killed Cpn and the immune response to those endotoxins. Subsequently, it can be caused by the immune system's clean-up response to apoptosis. Ear inflammation should not be taken lightly, as your hearing and balance are dependent on the good working order of your ears. Also, ear inflammation can cause or worsen tinnitus.
Is it my imagination, or are most of Cpnhelp.org's American PPMSers in an area comprised of the southernmost mid-Atlantic states and the northern south Atlantic states (North Carolina to Maryland)? If so, why would that be?
Joyce~caregiver-advocate in Dallas for Steve J (SPMS). CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgGi/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.