cypriane's blog

DISH

Hi friends,  I haven't been with you much for the past several days.  I've been out of commission due to a problem that has been diagnosed by a chiropractor as DISH (diffuse idiopathic skeletal hyperostosis).  The x-rays show long shallow hook-like projections extending off some of the vertebra in my neck and mid-upper back and some other types of bone overgrowth...and I had been so pleased until now that my bone density was above average!  I'm hoping this might prove to be my ticket to getting a doc to prescribe the CAPi for me.  Does anyone know if this is a reactive form of arthritis?  Is there any decent documentation implicating Cpni in this condition?  Weird thing---my tinnitus">i got much louder when the pain started and has stayed very loud.

Anyway, if the moderate arterial build-up revealed in a recent MRI, the HBP, the chronic respiratory infectionsi, the mild lower back and hip arthritis, the history of borderline blood sugar levels, the high cholesteroli, the developing cataracts, the macular granulation, the pre-hysterectomy fibroidsi, the tinnitus, the morning fogginess and imbalance, the dry eyes/mouth/skin, and the carpal tunnel syndrome don't justify the CAP, perhaps periodic excruciating PAIN and a disabled hand will do the trick.  Thanks for listening...any help on links to documentation would be appreciated,

Steve J's Update: The Counter-intuitive Becomes The Intuitive?

Steve's first flagyli pulse was Saturday, November 18.  It was a one-day pulse with three 375mg capsules spaced several hours apart.  Nothing earth-shaking happened, no nausea.  There was some extra tiredness, sleepiness, a little crabbiness, some moderate worsening of imbalance, temperature increase from 96.5*F to 98.1*F, and some slow-motion leg writhing when he tried to nap.  The next day he was only a little wobblier and more tired than usual but in a good mood.  This is Friday, and over the past few days, he has continued to be a little wobblier and more tired than his new usual, but now he's experiencing that disconnected, depressed feeling.  He fell at work today, felt as if everyone were watching him, and his mind dwelt on the prospects of his continued employment.  The last time he fell at work was about a month ago.  He doesn't remember that, before then, falling was a fairly frequent event.  There's nothing that can be done to make him remember those foggy days, but it would certainly make things easier for both of us if he could remember them.

Experimental Back Porch Thread

Dear Cpnhelpers,  This is an experiment.  I'm hoping that this and possibly future "back porch" threads will be magnets for our casual and familiar personal conversations on everything from washed-away dirt to itchy stitches, foggy days to sharp days, goats to cabuchons, Yeats to Longfellow, and so on.  I suggest this thread be closed somewhere between 30 to 35 comments and deleted 30 days after the last comment even if the count has not reached 30.

I'll start...I'm glad Emmitt won the championship on "Dancing With The Stars" even though I don't watch football.  Was there ever a more engaging personality?  I'm a quilter, but I don't do the quilting by hand anymore due to carpal tunnel syndrome and declining eyesight.  The most memorable movie I've rented in the past six months was "The Merchant of Venice" with Al Pacino and Jeremy Irons...I will read the play again when I lay down my sword and shield.  It's disturbing to our 21st century sensibilities, but there is value for anyone in the story if you can grapple with the anti-semitic prejudice of the time yet appreciate the humanity of all the main characters.  Al Pacino was a surprising choice and terrific in the role of Shylock.  Perspective is an amazingly changeable thing...locating this play in my "Riverside Shakespeare" I find it in the "Comedies" category.  There are only two major points of comedy in this play; the rest is serious.  Joyce

Another Problematic Illness In The Family

Tonight Steve and I learned that his father has just been diagnosed with Sezary's Syndrome.  I've been surfing the internet to investigate, but available information seems very thin and vague.  It appears to be rare, incurable, and characterized by an overabundance of white blood cells.  It's classified as a cutaneous T-cell lymphoma.  It looks like another disease that is studied and studied and studied, but the existing treatments can only offer hope to slow down its progression.  This is sounding far too familiar.  Dad will go to Yale University in a matter of days to allow the Sezary's experts there to study his case and perform one or more of those "hopeful" treatments.

You all know what we're wondering:  Is this something else that eventually be added to the "exhaustive list?"  Will Steve's parents be overwhelmed by the very professional talk of the rarity, the complexity, and the mysteriy of the body's immunei system gone berserk?  Will Dad be treated ineffectively until he dies from lack of effective treatment?

Inflammation > Cancer

Marie,  I know you're laid-up, but when you're feeling better and you're not on "drugs," please explain why I know I'm looking at something so familiar, so important to this group, and so pertinent to my mother's bladder cancer when I read this abstract:  "Chronic inflammation as inductor of pro-cancer microenvironment:  Pathogenisis of dysregulated feedback control"<.  In the meantime, I'd appreciate commentary from anyone else too.  Thanks,

Joyce~caregiver & advocate in Dallas for Steve J (SPMSi) on Wheldon CAPi since Aug. 21, 2006

"Factor isolated that regenerates nerve fibers"

Cpni Conquerors:  Here's something that could hold huge potential in addressing nerve damage:

http://tinyurl.com/yewysk<

Joyce~advocate and caregiver in Dallas for Steve J (SPMSi): started Wheldon CAPi Aug. 21, 2006

On msrefugees: Much Ado About Something

Learning should never stop until you die.  I'll be 54 in a few weeks, and I just learned a whopper of a lesson.  "When in Rome....." is so true.  Being a cyberspace infant, I have only become consciously aware that not only are the atmospheres of the various MSi websites we visit so very different, but that they serve different purposes. 

One of the websites that many of us frequent has a confrontational, free-to-bash, and many times negative atmosphere.  It serves its purpose.  On this site, we are polite, nice to each other, and supportive, but we are very focused on the business at hand.  We know what our purpose is.  And then there is this new site some of us have been posting on called msrefugees.  The purpose of msrefugees is completely different from both of the others.  I can only speak for myself here, but I think we've made a mistake.  The mistake was not in our attempt to spread the word about antibiotic treatment but in walking in the door wearing combat boots and primed for challenges.  Now that I'm seeing this different atmosphere and purpose thing more clearly, I surmise that historically, the established msrefugee group members (newly regrouped from the old MSWatch message board) collectively made a soft place to land for each other.  The site also offers a variety of helpful MS-related forums that many MSers need.  One thing about this new site that any visitor should realize is that the group prizes niceness very highly.  Again, we are nice to each other here too, but then we're all "birds of a feather" on the subject of MS causes and treatments.  It's easy to be nice.  And yes, we're open to information on other pathogens and their treatments, but we don't have to put up with any "autoimmuners" now, do we?  This might be difficult to understand, but I think even firm disagreement could be taken for argumentive rhetoric on msrefugees, and arguing is something they don't like.  Understandable...a soft place to land shouldn't have thorns in it.  As for myself, from now on, I intend to make a conscious venue transition when switching from one site to another in terms of style and attitude.  

Circus Monkey

As some of you know, last week I made a connection with another caregiver on a different forum.  On the trip home from work Friday evening, I let Steve know that we would be meeting him and his newly diagnosed wife over the weekend.  I joked "You'll have to perform like a circus monkey."  This provoked the look I had expected, so I said "No. Seriously, your typical 'okays' and 'I guesses' are not going to work for this meeting."  Then I asked him to assess the differences between now and two and three months ago.  Uh oh!  He doesn't remember how he was two to three months ago---he was too foggy then to know he was foggy and whipped to the ground by fatigue.  This meant that johnnymac and his wife would have to depend on my assessment alone in terms of Steve's improvements on the protocol.

Morgellons Disease

There was a feature story on the TV last night about a mysterious ailment that causes the sufferers the sensation of bugs crawling on their skin.  They also have lesions with fibers growing out of them.  I'm posting this link for those site users who have Lyme's since it includes information to the effect that half of those afflicted with Morgellons Disease< have also been diagnosed with Lyme's.

Joyce~caregiver and advocate in Dallas for SteveJ (SPMSi):  started Wheldon CAPi August 21, 2006

Losin' It

I wasn't prepared for so much loss.  Steve is losing much more than Cpni, Mpn, viruses, heavy metals, hair, bad gut flora, bad vision, slurred speech, etc.  This other loss is ticking me off:  he's losing weight, love handles, and rear end.  He now weighs less than me, and I hate that.  After all, he's seven inches taller than me.

I can forgive him his inflating vanity, though, because he's feeling good, he's up and buzzing around with new-found energy, and he's smiling.

Joyce~caregiver and advocate in Dallas for Steve J (SPMSi):  started CAPi 8/21/06

Rainy in Prince George, BC

We have a new user called "Rainy" in Prince George, BC, Canada.  Rainy's personal statement includes a request for guidance in finding a doc to prescribe the CAPi.

Rainy,  Please make an introductory blog about yourself.  Click blog entry under the create content section on the left side of this page.  When you finish writing your blog, be sure to scroll all the way down the page you're on and press preview or post or submit.  Welcome and please let us hear from you in a blog...no one is going to see your message where it is now except by accident or purposeful search. 

Joyce~MSi caregiver and advocate - Dallas

Steve J's Update:

For history see "At Last!" and "At Last!:  Part Deux..." blogs.  Steve is ready to add azithromycin to the doxyi, but will postpone that for two weeks due to critical upcoming work events.  Otherwise, things have progressed as expected:  die-off reactions characterized by exacerbated MSi symptoms and temperature fluctuations followed by relative recovery.  Noticeable improvements are:  less brain fog, better color, restless feet calming down, diminishing eye fatigue/clearer vision.  Also, since the first few days on the chelation therapy, he no longer smells and tastes like "The Tin Man."  Something unexpected was that two nights ago he had trouble sleeping because of sciatic-type pain in his right lower back/hip/upper thigh.  He hasn't felt that for a few years now...he's only been able to feel a dull discomfort.  This is a pretty dry account...sorry, I'm in a dry mood.

Lupus Fish Story

I may have caught one.  My niece who has lupus stayed with our dogs and cat while we were in Boston recently.  I've been attempting to "evangelize" her for months, but apparently leaving the NACi out on the kitchen counter combined with some time reading on this site piqued her curiosity enough to take a little plunge.  She's been having some pretty nasty die-off reactions, but she's up to 1200mg 2X/day now.  Consider this with the additional information that she has also been on plaquenil for a good while now.

Is there any other user on this site with lupus?

Joyce~~~MSi caregiver and advocate - Dallas

At Last! Part Deux: Quicksilver & Other Toxic Metals

Dr. X's nurse called this morning to discuss the results of Steve's heavy metals/toxins urine test.  She said Dr. X describes his concentrations as a "severe burden."  Out of the 15 substances he was tested for, he is positive for 11.  Of those 11, he is particularly elevated for 2:  mercury and antimony.

As soon as the recommended agent (Chelex) arrives, he will start on a half dose (1 capi) every other day for six weeks: then he will take a full dose every other day until the bottle is empty.  That will take about 4 months.  After that, he will wait 6 weeks and have a new test.  If the mercury level is not being reduced as it should, "silver" filling removal will be discussed.  While the chelation is in progress, he can only take his mineral supplementsi on the days when he is not taking the Chelex.  That includes exclusion of any supplementsi containing incidental minerals...that's a tough one.  Calcium and magnesium are in many of the supplements he takes whether they need to be or not.  He is also supposed to add Caprylllic acid to his regimen during the chelation.

Irresponsible Blogging

It was me.  I did it today on Pink's "NACi and mercury" thread.  The intent was good, but I fell into a trap so old and common, I certainly should have known better and should have seen it coming.  I'm chastising myself publicly for the good of this site...this could happen to others and it shouldn't happen on cpnhelp.org.  It was so fast and easy, I didn't even recognize that I had succumbed to a temptation. 

I wrote that a well-respected doctor "said" something, and then I paraphrased what he said.  In my attempt to convey the idea in the fewest words possible, I put an unintended spin on the actual statement.  Using the words "say," "says," or "said" should always throw up a caution flag.  Of course, the best thing to do is to provide a link to the actual source, make a direct and accurate quote, or provide some sort of "signpost" to the source of the information.  The physicians, scientists, researchers, theorists, and academics who put the information out there for consumption deserve that consideration.  A much greater consideration, though, is the possible effects on each other of what we blog.  Users of this site sometimes act on the information provided to them by other users.  It's a sobering thought.

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