cypriane's blog

Flipping Old Expectations

This is for the newbies. Some of you have quickly grasped the counterintuitive idea that the success of the CAPi and how it makes you feel are at odds with each other, and you have your jaws set to tolerate however much unpleasantness may come with the treatment. I congratulate you for having so much starch in you, and I hope the starch doesn't wash out. Others, though, due to a lifetime of quick medical resolutions or because of the type of impatience that comes from long, grinding suffering (inflammationi personality), are so very ingrained with the idea that a short course of medication will fix them right up if it's any good, they have difficulty grasping that this treatment is a very slow fix and one that may make them feel worse repeatedly before any rewards are enjoyed.

Steve J's Update: Pulse # 12

This is an 8-day pulse and will end tomorrow. As usual, Steve's symptoms have been the same as before the pulse if not a little better. In a few days, though, I expect he will be hitting the apoptosisi skids. Last night he had 4 MRI's, and I could kick myself for not delaying the pulse until after the MRI's were done---the coincident timing didn't occur to me until we were on our way to the imaging center. This will be his first brain MRI since Summer '06 (just before starting the CAPi), his first back MRI's since early '05, and his first abdominal MRI since June '07. Spilt milk!

"The exhaustive list" posted on.....

Cpnhelpers, I just found "the exhaustive list" only recently posted on a website for sufferers of Morgellons: http://www.morgellons-uk.net/?p=364< .  I'll show you mine if you show me yours.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni<, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Hey Doglover...about the WalkAide

Hi Linda, Watching that WalkAide video really struck a chord with Steve.  He talked about it all the way on our ride in to work this morning.  He especially identified with the lady's description of conscious internal instruction to her leg and foot while walking and how much energy is drained away in just walking and all the mental support that goes along with it.  The fact that the device has meant huge relief of her fatigue is mighty appealing to someone with huge fatigue.

Fiddlealliddle in NYC seeks doctor

Hey cpnhelpers,  A new member entered this comment on another thread:

"Hi Everyone, I am a newbie and have MSi for 10 years. I am looking for a doctor in the New York City area that can explore the ideas here with me."

Michele or a yankee, please give this new site user some direction.  Thanks, 

Steve J's Update: The Significance of a Cold

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 CAPi 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.

FIR Dreaming?

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

Steve J's Update: Systemic Candidiasis

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 CAPi 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.

Flying Prep?

We've discussed the bad effects some of us experience from air travel in the past. Did we ever get it nailed down as to what causes it and what can be done to avoid it? One of us in this community is about to face this challenge and could use any constuctive input. Please help. Thanks, Joyce

Steve J's Update: The War Against Yeast

It has been almost 5 months since Steve's last flagyli pulse. He hasn't missed a dose of doxycycline or azithromycin, though. For those who don't know, in addition to Cpni, Steve also has chronic Mycoplasma pneumoniae, Epstein-Barr virus, Cytomegalovirus, and HSVi-1 chronic infectionsi...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 inflammationi behind his chronic illness.

Arachnoiditis

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 Fibromyalgiai starts for a subset of FM sufferers.

"Definition

Let there be peace

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.

Dark urine associated with flagyl

What causes it? I've been asked via PM and can't answer this question. Any info for my bashful friend would be appreciated. Thanks.

CAP ear ~ What to do

If your Cpni history includes acute ear infections or sinusitis with stopped-up ears, the Cpn die-off while on the CAPi 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 apoptosisi. 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 tinnitusi.

PPMS Geographical Concentration?

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 (SPMSi).  CAPi since August 06, antivirals, heavy metals chelation, LDNi, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgGi<i</lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

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