cypriane's blog

Slice of Life

Submitted by cypriane on Fri, 2007-01-26 06:38
Yesterday morning: took mother to urologist/bladder cystoscopy/no new cancer. Yesterday afternoon: took self to dermatologist/infected cyst removal from scalp (this was rough) + basal cell carcinoma removal from face + sebaceous cyst removal from arm + squamous cell lesion frozen on other arm + something biopsied and cauterized on rim of lip/headache/Z-Pack (azithromycin). Last night: Steve left $400 worth of prescriptions in the shopping cart after purchase/we returned and, by God's grace, we recovered them an hour later/ he lost his keys and later found them in his pocket/ he lost a check---still lost. This morning: 2 pounds lighter. Joyce~caregiver-advocate for Steve (SPMS): started Wheldon CAP Aug. 06. Joyce (self)~Cpn falling apart syndrome.

An Unknown and Unknowing Ally

Submitted by cypriane on Sun, 2007-01-21 00:53
I posted an article by Dr. Gabe Mirkin titled "Why I Prescribe Antibiotics to My Patients With.....and Other Autoimmune Diseases" a while back. At the time, I only satisfied myself that he was a legitimate doctor, but today I quoted from the same article again on another site and took a closer look at Dr. Mirkin. This guy isn't exactly on the same page as us, but darned close. Perhaps he just hasn't made it this far...and he probably won't. He's surely retired by now. He has written his prolific opinions about the very illnesses discussed on cpnhelp.org. There is a recurring theme that's very familiar: antibiotics, antibiotics, antibiotics. Go to www.drmirkin.com to see what I mean.

Drug Interactions~Over-the-Counter Medications

Submitted by cypriane on Sun, 2007-01-14 18:09

This is a page from The American Association of Kidney Patients and has been provided specifically for that group.  It contains information, though, that might be of interest to many of us.  For example, this page cites interactions between St. John's Wort and erythromycin, rifampin, ketocolazole, and Tagamet.  Of course, I immediately wondered if that also applied to azithromycin, but I haven't found that information yet.

Steve J's Update: Barnacle Watching

Submitted by cypriane on Wed, 2007-01-03 13:17

During Steve's 2nd post-pulse period, he experienced some short-lived muscle aches in his left "good" leg.  I figured he would also be feeling the same in his "bad" right leg if he had not lost so much feeling in that one.  Early in the peaking phase that followed, I noticed him sporadically walking almost normally for a few yards at a time.  That improvement faded somewhat as apoptosis set in, and it didn't have time to recover to the same level by the time he had his 3rd pulse over December 30 and 31 (six total 375mg capsules of flagyl).  Concern that his rate of apoptosis might be outstripping his rate of cell replacement moves me to try a four-week cycle.  After the next pulse, we will re-evaluate this.

So far, pulse cycle #3 seems like a comparatively easy one.  It's still early in the post-pulse period, but the only particular symptom exacerbation seems to be everything that goes on in his mouth and throat.  The heavy salivation is heavier, swallowing a little worse (this is not one of his significant symptoms anyway), and his tongue is a little uncoordinated when talking.  If the pattern holds true as established in the first two pulses, these are the items that will be improved when he reaches his peaking period.

Black Vacuum

Submitted by cypriane on Fri, 2006-12-22 11:18

I'm going to conduct a bizarre test on myself based on a possibility that might explain why Steve continues to lose weight despite eating like a horse. We eat dinner later than we would like and retire to bed about 2-1/2 to 3 hours later.  He wakes up in the middle of the night and takes 12 to 14 charcoal capsules.  I think the charcoal may be vacuuming up part of his dinner.  So now, I'm going to try taking the charcoal in the wee hours myself to see if this is true.  It really rankles my ego that he weighs less than me.

What happened to my signature?  Oh well....

Joyce~caregiver/advocate in Dallas for Steve J (SPMS)- Wheldon CAP since Aug. 06; antivirals; heavy metal chelation; LDN. 

DISH

Submitted by cypriane on Sun, 2006-12-10 07:15

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 CAP for me.  Does anyone know if this is a reactive form of arthritis?  Is there any decent documentation implicating Cpn in this condition?  Weird thing---my tinnitus 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 infections, the mild lower back and hip arthritis, the history of borderline blood sugar levels, the high cholesterol, the developing cataracts, the macular granulation, the pre-hysterectomy fibroids, 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?

Submitted by cypriane on Fri, 2006-11-24 23:39

Steve's first flagyl 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

Submitted by cypriane on Sun, 2006-11-19 19:26

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

Submitted by cypriane on Mon, 2006-11-13 23:22

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 immune system gone berserk?  Will Dad be treated ineffectively until he dies from lack of effective treatment?

Inflammation > Cancer

Submitted by cypriane on Wed, 2006-11-08 01:39

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 (SPMS) on Wheldon CAP since Aug. 21, 2006