cypriane's blog

On msrefugees: Much Ado About Something

Submitted by cypriane on Thu, 2006-10-19 05:59

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 MS 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

Submitted by cypriane on Sun, 2006-10-15 19:28

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

Submitted by cypriane on Thu, 2006-10-05 22:49

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 (SPMS):  started Wheldon CAP August 21, 2006

Losin' It

Submitted by cypriane on Sat, 2006-09-23 11:05

I wasn't prepared for so much loss.  Steve is losing much more than Cpn, 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 (SPMS):  started CAP 8/21/06

Rainy in Prince George, BC

Submitted by cypriane on Tue, 2006-09-19 21:00

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 CAP.

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~MS caregiver and advocate - Dallas

Steve J's Update:

Submitted by cypriane on Mon, 2006-09-18 13:40

For history see "At Last!" and "At Last!:  Part Deux..." blogs.  Steve is ready to add azithromycin to the doxy, 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 MS 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

Submitted by cypriane on Mon, 2006-09-11 23:30

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 NAC 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~~~MS caregiver and advocate - Dallas

At Last! Part Deux: Quicksilver & Other Toxic Metals

Submitted by cypriane on Thu, 2006-08-31 12:40

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 cap) 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 supplements on the days when he is not taking the Chelex.  That includes exclusion of any supplements 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

Submitted by cypriane on Wed, 2006-08-23 21:12

It was me.  I did it today on Pink's "NAC 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.