cypriane's blog

At Last!

On Ash Wednesday I gave up evening television for Lent.  This gave me time for a fresh search of the internet for an effective treatment for Steve's MSi.  He had been diagnosed with RRMSi in January '05 and started Rebif shortly thereafter.  I never understood why the diagnosis was RRMS and not SPMSi...Steve is in his early fifties, and his earliest symptoms began in his early twenties.  The progression had been very slow but steady with pronounced acceleration over the previous two years.  No "attacks," just steady progression.  After a year on Rebif (an obvious waste of time, money, and chances to do something better), the Lenten sacrifice provided a timely opportunity to find that thing that was better.  I looked over everything I had researched the prior year; then I began to look harder at things I had dismissed out of hand back then.  One of those things was LDNi---the other was antibioticsi.

Self-doubt

Dear CPni villagers,  I'm writing on behalf of my husband Spotty tonight.  This weekend he lost his eye glasses and driver's license.  This morning, he forgot to pack up his fresh heavy metals urine sample for shipping and a bill payment that was due today.  He still pays the bills and packs up everything in the morning that we take to work because it's his longtime routine, and he likes to do it.  Now he's suffering from a bad case of self-doubt.  There's alot of wandering around the house looking really mind-boggled.  I can tell he's really worried about his mental faculties.  To make matters worse, he just learned that the business where he works is for sale.  The fear is that any new owner might not value his presence there.  Any kind words of identifying with his situation that I could pass on to him would be appreciated.

Dogs on Drugs

Maggie somehow ripped out one of her front claws while being rambunctious last night.  Her littermate Lucy has been developing more and more gut sensitivity for some time...diarrhea and vomiting for days following anything stressful like the July 4th fireworks, our party this past weekend, and now Maggie's accident.  We left the vet's office with Previcox (for pain and inflammationi) and Cephalexin (Keflex?) for Maggie.  Lucy got Metronidazolei for her touchy guts. 

I've wondered if these dogs and the cat are CPNers, and I guess we're about to find out.  We adopted them from my niece who has Lupus when she moved to London---I'm certain she's a CPNer like I'm certain about most of the rest of my family.  So doglover, if you read this, what do you do for your dog when it's herxing?  Thanks,

Wistful for Willow

Dear mswillow,  We are thinking of you, missing you, and wishing you all the best.  Please say hello when you are feeling like it.  Warmest regards, Cypriane

You are heard

Dear Avon 1,  You are heard.  There are several users of this site who can speak to your issues, but I'm not one of them.  There is one user who is not logged on right now who is particularly appropriate to respond to you...this will come.  In the meantime, we will hold you in our hearts.  Cypriane~~~MSi caregiver and care advocate, Dallas, Texas 

Isolation

Discovering cpnhelp.org has brought hope and enthusiasm into our lives...and isolation.  I don't blame this website for the isolation; I blame myself.  This is the new world my husband and I have have moved into, and we're happy and relieved to be here, but our lives still intersect that other world.  That other world is where we (particularly I) feel so isolated.  It's not the struggles with the medical community I'm talking about this time, it's family.

My husband "Spotty" has SPMSi.  Most of his family is in the northeast with the exception of his aunt (a retired RN) who lives near Ft. Worth.  Thank God for her!  She is the only family member who has shown any enthusiasm for the direction we have taken.  Her moral support is limited though by distance and time restraints imposed by the health concerns and relationship demands of her own nuclear family.  Spotty's sister (also an RN) cares for patients with neurological illnesses---her last comment was "The docs up here don't think much of your antibioticsi."   His daughters and parents are simply thankful he's married to someone who loves him enough to take care of him and try to find ways to help him.  Though they haven't tried to dissuade us, they are not encouraging us either.  The thing that irritates me mostly is that not one of them has taken the time to visit this website to find out about Cpn and the CAPi.

Flashy Website Re: CPN + Cardiovascular Disease

Hi Guys,  I was just visiting a flashy website called theheartattackgerm.com selling a book published in 2003 named The Heart Attack Germ and pushing something called WIN/WIN Therapy.  The germ, of course, is chlamydia pneumoniae.  It also implicates CPNi in Alzheimer's, and I suppose the WIN/WIN Therapy involves some abxi.  Anybody know anything about this site/book/therapy and how we might manipulate some benefit out of it for cpnhelp.org?  Cypriane

So Much Power...Yet So Powerless

This morning while riding to work, I learned that my husband Spotty was experiencing an endotoxini dump from EBi die-off.  Not only were his usual MSi symptoms much worse, he was achy in his joints (not usual) and feeling very crappy (he's a morning person and morning is usually his best time of the day).  Why was this happening when he isn't even on the abxi yet?  Yesterday, he kicked his NACi up to the full dose, because he seemed to have passed through the very "snotty" phase.  On top of that, having reached the two-week-after-colonoscopy mark, he had a green light to start taking the supplementsi that have blood-thinning properties.  That means he started the vitamin C, the CoQ10, the fish oil, and the vitamin E.  Since the point of taking the selenium is to enhance the vitamin E which enhances the NAC, that was started as well at the same time.  That means the EBs were getting a triple-whammy as compared to just the half-dose with no enhancer.  God blessed me with an unexpected business errand this morning that brought me by a vitamin/supplement store where I bought him a couple of bottles of powerful "lemonade" and some activated charcoal.  I dropped the goods off at his office, and the anti-herx measures worked very well---how empowering.

Tangents

Dear CPNi villagers,  For us, it's all about projecting and planning right now, though my husband Spotty and I are already enjoying the benefits of the supplement regimen aspect of the CAPi (we are grudgingly allowing a few more days for the latest prospective prescriber to respond before going it on our own).  SPMSi is not Spotty's only challenge; he is also dyslexic.  On July 31, he has an appointment to see a doctor in another city four hours away whom I consider to be the physician of his recovery (not primarily of treatment).  What we are desperately searching for right now is an interim prescriber.  The out-of-town doc (Dr. X) is a neurologist, ontologist, and a neurotologist who specializes in autistic spectrum disorders (dyslexia falls into that category) and in helping people with degenerative neurological disorders.  The areas of his interests are odd and exotic to us, but interesting.  Besides addressing chronic bacterial infectionsi, he is also interested in addressing viruses, mycoplasma infections, fungal infections, allergens, heavy metals. organic solvent exposure, etc...(a round up all the ususal suspects kind of guy, all from an aspect of treating autistic spectrum/sensory integration disorders as well as the degenerative neurological diseasesi).  A paper we have read on his practice reveals treatments that seem "Feldenkrais Method-esque" (a therapy unknown to us before sammyjo's mention) aside from all the aforementioned points.  We don't know if this doctor is a charlatain, an unfocused flake, or a brave genius. To his credit, he responded quickly when we sent him a copy of the CPn Handbook, and no objection was raised to us finding an interim CAP prescriber (though his assistant asserted that there was no guarantee that he would prescribe the CAP).  Projecting into and researching all the planned treatments (the CAP, LDNi, and Dr. X's stuff) has lead us into tangential areas unearthed on the internet that overlap into areas on this website.  Please indulge our curiosity if you know anything.

A Different Perspective

Reading Sojourner's Talon blog and combing through other threads moves me to share some thoughts that have been simmering on one of my back burners.  I have been in one of the trade industries of construction for thirty years.  I have been involved in countless commercial and residential remodel/renovation/reconstruction projects during that time, and besides the obvious analogous changes that take place from start to finish, there are other things that go on in the process that parallel the stories that emerge in the CAPi experience blogs.

You are all under reconstruction:  the building=your body, the owner=your psyche, the architect=the CAP formulators, the permit=the prescription, the inspectors=the doctors, the general contractor=the protocol, the trade workers=the abxi and supplementsi, the work they perform=the effect on CPNi and your bodies at the cellular level.  The same thing happens on every one of these projects---things get worse here and there before they get better.  Maybe a section of the roof has to be removed with rain in the weather forecast,  maybe the plumbing is temporarily out of order, maybe the heat or AC is off because the gas or electricity have to be off, maybe there's dust all over the non-construction areas of the structure, or maybe there's a pile of rubble or a construction dumpster in the yard.  And there are all those strange people in and out, intruding into your private space, no peace.  This tends to make the owner feel very weary, irritable, overwhelmed, anxious, impatient, and sometimes, even nuts...it's a type of suffering.  Once, my company was even kicked off a job for breaking something during installation.  We knew we would have to "eat it," but the owner over-reacted without first finding out our intentions (=quitting the medication to try something else).  Those of you who have experienced a remodel know the type of frustration I'm talking about.

Unfamiliar Color in the Bowl

Dear CPNers,  I am writing a proxy blog for my husband Spotty.  He said he was going to register earlier today, but now all he can do is slip into his well-worn groove on the sofa and snooze.  We are still working on the prescriber-finding phase of the CAPi, but we are both on all the supplementsi.  He expressed a concern to me this morning about what all those supplementsi might do to his kidneys.  The new urine color and different smell are making him a little apprehensive.  It's not enough for me to say "me too" and that vitamins and supplements have always made my urine an off color.  Would you guys please give him your opinions?  Thanks, Cypriane

MSi caregiver and care advocate - Dallas, Texas, USA

Medical "Insurance"

Dear CPNers,  Here's a story that will make some of you think "Well, she just hasn't been around the block."  Others will think "Good grief!"  In preparing to start the CAPi, my husband Spotty has been in and out of doctor's offices like crazy and has even had a couple of medical procedures in the past month.  Each time, great care was given to filling out forms and answering questionnaires.  There were even a couple of lengthy telephone interviews.  I'm sorry to tell you that all that information taking counts for very little.  When the exam or procedure time comes, most of the involved parties haven't read that information.  They don't know anything about the patient. 

Yesterday, Spotty had a routine over-50 colonoscopy.  The anesthesia was a huge concern since only two weeks prior, the general anesthesia for a lipoma removal had led to bladder shutdown, emergency catheterization, and a bladder infection.  This time around, there was alot of information taking by all parties including the anesthesiologist's representative by phone the night before the colonoscopy.  In pre-op, several parties popped in to do this and that.  I asked each one what role they would play in the "event."  Some of them asked questions, and I asked questions of the ones who didn't ask.  Not one of them knew that Spotty had MS or that he was a heavy salivator.  The heavy salivation factor mixed with anticipated unconsciousness or incapacitation has concerned me for a long time, and there's no need to get aspiration pneumonia as a result of having a colonoscopy!  Even though we knew he would be lying on his side during the colonoscopy, we wondered about what position he would be in during that time after the procedure and before he would be awake.  Why was I doing all the talking?  The man is not a talker, especially when the subject is himself.  Besides, he's too busy swallowing all that spit.

Supplements Tax-Deductible?

If a physician prescribes the supplementsi on an Rx form, is it tax-deductible?     Cypriane

Texas Prescribing Dr. Needed

Cpni villagers,  Looking for a Texas prescribing physician for husband with MSi.  Since we are in a Dallas suburb, a north Texas doctor would be even better.  Please help.  Thanks,   Cypriane

Buried research informatin

Jim K,  Tonight I re-exhumed the body of a blurb from the "mainstream" MSi website that I had unearthed two days ago.  It had required quite a bit of digging the first time around.  This evening, I purposely tried to find it in the same way I had done previously in order to reassess just how obscure it really was.  Ran out of patience and gave up.  So I used the website google search and found it by using a key name and a word I remembered from before:  "Lindsey bacteria" brought it back again.  This concerns research underway by J. William Lindsey, MD, Department of Neurology, University of Texas Health Science Center, Houston, TX.  The subject of his research is "Bacteria and MS" with a run from 12/1/05 t
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