cypriane's blog

Joyce's CAP Log: The Beginning

May 15, 2007 was my start date. I took 100mg doxycycline for 5 days with very mild reactions: 3-1/2 year old hysterectomy scar turned red and itchy for 2 days, eyes red-rimmed for a day, residual puffiness and redness underlying 3 month old surgery scars on cheek and upper lip increased for 1 day, then "deflated" to a lower profile than before.

Steve J's Update: "Deja vu all over again"

This is what I wrote 5 months ago, about a week following Steve's 2nd pulse:

"This morning I noticed that......the whites of his eyes are unusually white for him.  Something unusual happened during Mass this morning.....he drifted off to sleep during the homily (not unusual), but...the sleep had been very unusually deep, something like a loss of consciousness. When he woke from it, the sanctuary seemed darkened for a moment and his tinnitusi<i< was suddenly much louder than usual."

A Year of Pre-Protocol

I started taking the recommended supplementsi one year ago, went through NACi flu, and I have felt generally better except for periods of high stress. After a lifetime of frequent acute respiratory infectionsi and maintaining a constant low-grade sinus infection, since starting the supplementsi, I have been free of those acute infections and free of the symptoms of chronic sinus infection (except for a nagging little dry cough). There have been times of minor allergy symptoms when the mold spore counts, or mountain cedar and ragweed pollen counts were high, but they have gone away when the counts lowered instead of launching me into an acute sinus infection as they had done in the past.

Interpreting Cpn Antibody Titers

Scan down this webpage< that I found very helpful for interpreting my Cpni antibody titers.  It starts out discussing chlamydia species in general, then gets specific for different ones.

Lauricidin

I apologize for the wide text spread, but after many attempts at getting rid of it and

having lost this post three times already, I'm going with it as is.  Since the real value of

this post is as a reference list, I don't think the wide text field will matter much (unless

it causes a site problem).

Please read the attachment first for an understanding of why I have posted this

reference list.  I hope it will help you, but please use this information cautiously.

The following is a compilation of resources I've been gathering for the past nine months

on lauric acid/monolaurin/glycerol monolaurate/Lauricidin.

Re: Vitamin D---Translator Needed

I just ran across this abstract< concerning vitamin D. I don't understand it, but I sense this might be worth understanding. Anyone who can translate this, please do:

Query~Implications of Negative Liver Testing

Occasionally we have a site user who has to take a break from abxi due to liver enzyme testing with results indicative of damage. Of course, it's difficult to discern exactly what's causing the problem. But if someone is doing something exotic, let's say, like a CAPi for example, the antibiotics will be the # 1 suspect in their physician's view, and the doc orders a break from the abxi and anything else that could be problematic. Momentarily, whether or not the culprit has been one or more of the CAP antibiotics becomes a secondary issue, the primary consideration being the abstinence from anything that might be contributing to liver stress until the condition is resolved. Then the suspects must be sorted out and dealt with.

Steve J's Update: Approaching a Corner?

With 5 pulses behind him, we are anticipating what will come in the CAPi phase of pulses 7 - 9. Some of the CAP "old-timers" report that phase to be one of turning a corner in the treatment, a time of having reached appreciable improvements when drawing a comparison to their conditions before starting the CAP. We recently opted to do the pulses on a four-week cycle from start of pulse to start of next pulse. This is working out better for Steve because his post-pulse period is a full two weeks. At least he has near 1-1/2 weeks of "normal" time. That "normal" time is really the only time to assess his progress on the CAP, and so far, we are very encouraged by the results.

Is DCA the same thing as naltrexone?

I just read a sketchy thread on another site that leaves the impression that DCA (dichloroacetate) is naltrexone. DCA was the subject of a recent post from Ron, but I can't find it now. The article Ron posted was about DCA as a safe, cheap, long out of patent drug that has already been in use for a long time. The big recent news is that it has been found to kill cancer cells by waking up the cancer cells' mitochondria which then signal apoptosisi. So can anyone verify if naltrexone and DCA are the same?

Joyce~caregiver-advocate in Dallas for Steve (SPMSi)-Wheldon CAPi since Aug 06

Buddy List?

I've just discovered this new feature, the "buddy list." Poking around, I discovered that someone who is already a buddy had requested me to be a site "buddy." Question: What are we supposed to be doing with this feature that we are not already doing? And how do you "operate" it? When I think of all those I want to be my buddies, the list of names seems endless. There isn't anyone on the site I want to exclude. Are there dues involved? PS: That last question was a "tongue-in-cheek" query, but Michele's ingenious tongue-in-cheek punctuation isn't working out since the site overhaul. Joyce~caregiver-advocate in Dallas for Steve (SPMSi): Wheldon CAPi since Aug.06 for Cpni+Mpn; antivirals for EBVi+CMV; completed heavy metal chelation; LDNi.

Slice of Life

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 (SPMSi): started Wheldon CAPi Aug. 06. Joyce (self)~Cpni falling apart syndrome.

An Unknown and Unknowing Ally

I posted an article by Dr. Gabe Mirkin titled "Why I Prescribe Antibioticsi to My Patients With.....and Other Autoimmune Diseasesi" 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

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

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 apoptosisi 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 flagyli).  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

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 (SPMSi)- Wheldon CAP since Aug. 06; antivirals; heavy metal chelation; LDNi

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