cypriane's blog

David, If you're there.....

RE:  developments and comments from the past two days on the "Coming Aboard" thread.  Any input from you concerning Spotty's post-surgery antibiotic or anything else would be so very appreciated.    Cypriane

Too much thinking?

Too many back burners, too many pots boiling over---so many areas to investigate, so many unexpected connectable dots emerging, so much combing through old threads, so many community members (real people with real lives, real struggles, real histories, real futures).  I'm involved in a learning process that is so compelling, it's hard to break off and take care of my other concerns.  It's driving me to physical and mental exhaustion.  The excitement from finding hope for effective treatment of Spotty's MSi and the energy expended from frying this big fish and telling my family and friends about it has resulted in an 8-pound weight loss in the past two weeks.  No effort there, the pounds just got jittered off.  Still, I find myself stepping back to ponder the whole CPni/exhaustive list of illnesses/antibiotic treatment ball of wax from a broader perspective. 

Almost Too Scary To Think About

Today middle sister and I were with our mother for her arteriogram.  When she was asked to sign a document to okay any necessary blood transfusions, it hit me like a ton of bricks---I've donated several pints, but Spotty has donated a few gallons of blood.  You medical and science geeks out there...what are the implications of this?  If MSi incidence is on the rise, what about all the other chronic diseasesi on the list?  I'm thinking about the blood supply, the increasing mobility of peoples in the world, increasing numbers of significant others per person, etc.  The combined potentiality of these factors is longterm, global, and socio-economically threatening. 

There must be so many with chronic diseases who have generously given their blood...is it to ill effect?~~~~~Cypriane

Marriage Made In Microbe Heaven & Family Legacies

Spotty and Cypriane sittin' in a tree, K-I-S-S-I-N-G, I'll give it to you, you'll give it to me, and we'll live together so germily.

OK, Jim K, I'm getting the picture.  Looking into Lupus on this website because my NIECE has it, I tripped over Sjogren syndrome (possibly ANOTHER NIECE and ME).  I also looked into uterine fibroid tumors; plenty of those to go around amongst my MOTHER, SISTERS, and ME.  Chronic sinusitis is enjoyed by almost EVERYONE in the family, not to mention lots of other respiratory infectionsi.  And then there is my NEPHEW.  I haven't researched him yet, but this is his history:  pneumonia at 2 when he inhaled a peanut, pneumonia again at 3 and at 4, bacterial spinal meningitis at 4, in early adulthood, he developed some kind of serious sinus condition that causes his face to become enlarged from sinuses getting packed with some dark, muddy gunk that has been augered out at least twice, diagnosed bipolar a couple of years ago, last Fall he had surgery to repair a large hole in his heart.  Interestingly, his IDENTICAL TWIN has had none of this.  For my family, I also plan to investigate heart diseasei, peridontal disease, and fibrocystic disease of the breasts.  No telling what else I'll trip over. ***click "read more" on the tab below.

Blood thinners anyone?

Preparing to get those minor medical matters out of the way before starting the protocol.  Spotty gets a CT scan tomorrow to see what that hard egg-sized lump on his back is about: it will be resolved one way or another soon.  Anticipating surgery on that and a routine over-50 colonoscopy, I'm checking out all these supplementsi we just bought to identify the blood thinners (Warning!...to those dark humorists out there:  The plan is to hold off on those temporarily, not make sure he takes plenty!)

Anyhow, I've identified Vitamin E, CoQ10, and fish oil a blood thinners.  He's been taking ginkgo biloba and flaxseed oil---neither of these is on the cpni.org list, and he's just discontinued them.  Not much he can do about the Motrin he takes before injecting Rebif.  Are there any others supplementsi he should postpone starting till after those procedures?

Heat+Herx Dread

The summer heat:  a huge issue for local MSers (Dallas area).  The timing of Spotty's protocol start will probably make him herxy just in time for the heat.  Been dreading the heat effects on his MS since they were so bad for him last year.  He has a cooling vest with refills.  This helped alot last summer, but he was still in pretty bad shape in the afternoons and falling down frequently.  Foot-dragging, bladder problems, and fatigue symptoms are worse now and it's still relatively cool.  He's still working full-time---a tenuous and sometimes questionable blessing.  Now projecting thoughts of just how bad that H+H effect might be and wondering if his job will survive it.

Who of you out there has experienced coinciding herx and extreme heat?  What happened?  Any ideas?  Thanks~~~~~Cypriane

Pondering Implications of Caregiver Sinus Infections

Hello Bloggers, Noticing the frequent mention of sinus infectionsi, it makes me wonder if I may have been feeding Spotty a steady stream of extra CPni for several years.  Not looking for a guilt trip---who knew?!  Well, maybe you guys.  Anyway, in the 8 years we've been married, I've had pneumonia twice, bronchitis at least 3 times, and at least a dozen sinus infections.  Much of the time when I don't have a full-blown sinus infection, it seems like I'm trying to get one.  Could this have any contributing effect on his MS progression?

Coming Aboard

My husband "Spotty" (as in MRI) is too fatigued and uninclined to plink around in cyberspace to unearth MSi research and treatment information, so it's up to me.  Besides, he says the letters are beginning to run together when he reads.  He's had enough of that at work by the time he comes home.  I try to read it to him, but he falls asleep within a minute.  Since he loves and trusts me, he's willing to do whatever I think best---this responsibility is frightening!

Spotty has been treated with Rebif (to no apparent avail) by a general neurologist since his diagnosis in January 2005; tomorrow we will receive the last Rebif shipment.  He is waiting to get an appointment with an MS specialist at a university hospital MS treatment clinic in our area.  Not expecting the specialist to offer any useful help, we intend to use him to get a base-line MRI for future use in evaluating the effectiveness of the abxi protocol.  When he declines our request to prescribe the drugs, we will invite him to monitor what happens.  We will try a few other doctors, but we expect to resort to buying them over the internet.

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