hdwhit's blog

The people in the waiting room thought I had lost my mind...

...but what else is new?

I didn't get a tutu, but I did dance into my neurologist's office as discussed in my blog here last year.  The other patients - none of whom looked any more disabled than I am looked at me like I was insane.  I just wished them a good day and told them I was happy that my neurologic problems were getting better.

Even with an Islay Single Malt...

...the muse has left me. 

I have posted about this several times before.  When I had an untreated CPni infection, my personality changed - and in the opinion of my wife it changed for the better.  I could compose terrible prose worthy of the Bulwer-Lyton competition that were almost funny.  That muse left me as my brain recovered From the CPn infection.  After getting used to the jovial CPn infected me, my wife doesn't really like the new (similar to the old) me.

It turns out the rental place didn't have a tutu in my size...

You have to read the last paragraph of my March 2011 posting for the subject line to make sense.

It was another recordbreaking day in Dallas.  The people who say global warming is a myth had been strangely silent for more than a month as temperatures climbed to levels that even the residents of Phoenix or Tucson would have found uncomfortable.  Worse for the Texans was that the humidity had not dropped to desert levels so being outdoors was like being slow roasted in a convection oven.  The deteriorating asphalt of the parking lot outside his neurologist's office that he had skipped across like a frog jumping between lily pads at the time of his last visit had melted in the heat and looked almost new.   

That's "Mister Clifford" to you...

The door was slightly ajar as his hand reached up to push against its weight.  The door swung open silently as lightning flashed and briefly illuminated the interior of the cabin.  The sound of the rain was distinctive on the tin roof.  As another bolt of lightning flashed, he looked around to see if he could make out the shape of the man that he felt he had over the past years he had in a perverse way come to know; Mr. Paul Clifford.  The cabin had no electricity so the lightning turned out to be a mixed blessing,  With each flash it illuminated the room while yet destroying the vision his eyes had patiently won back from the moonless night.  As he scanned the room through successive flashes, he slowly came to understand that the bemedaled Mr.

It was early in the morning...

It was a dark and stormy night....  Well, in this case that's literally true.  We've had no moon, but lightning and thunder with no rain.  It's the kind of weather you would expect at the start of a gothic horror movie. 

Seeing yet not Perceiving

Bulwer-Lytton prize, here I come!

It was unseasonably warm for an early March day, even for a city like Dallas whose inhabitants in July and August considered it to be Hell's waiting room.  He walked across the deteriorating asphalt of the parking lot and into the first-floor office of his neurologist thinking that in a few short weeks, it would be almost warm enough for the parking lot to melt and the chunks of asphalt to fuse together in a new pattern. 

I have M.S. but its in remission?

Got the results of my latest MRI today.  The radiologist report said that in comparing with the previous MRI (January 2009) there was no change in the number or size of the lesions and as in 2009, none of them were enhancing.  

Every other person I know with M.S. is deteriorating but I'm getting slightly better and the doctors won't believe me that the antibioticsi had anything to do with it (even - as with my neurologist - they ask me specifically whether I have been taking them).  

If there is any downside to the CAPi, it is that without it I would probably be retired on disability by now (and due to a quirk in the way they changed our retirement plan at work, the disability annuity is slightly more generous than regular retirement).   

What you leave behind

I last completed a maintenance pulse in November 2009. 

I had my annual visit with the neurologist at the medical school in Houston in January 2010.  EDSSi now "about a 2" versus the "about 2.5" it was in January 2009.  As he considered my progression (or lack thereof), he asked whether I was taking antibioticsi.  I told him none since November 2009 which left him scratching his head since he can't account for my "atypical progression".  (For the record, I previously discussed antibiotics with him and he dismissed it since he is of the belief that M.S. is caused by a virus).

Praying to the Porcelain God - Not

As I get ready to finish up a maintenance pulse, I just wanted to report in on something. 

Because of the chemical similarities between Flagyl and Antabuse (a drug that is used to treat alcoholism), we warn people that Flagyl could cause the same reaction so they shouldn't drink during a Flagyl pulse. 

During my entire time on the CAPi, I scrupulously avoided alcohol because I really hate to vomit.  But, after I quit having reactions to the pulses and switched to maintenance treatment, I started drinking again.  During one of my maintenance pulses, I wasn't even thinking about the possible Antabuse reaction and had a drink....

"Why is a freight train roaring through downtown Charlotte?"

My co-worker asked as we walked from the restaurant.  Although it was just as loud, it wasn't a freight train but a Nascar stock car being put on display as part of the preparation for the city's race days celebration.

I figured that travelling out of town the week after I completed my second intermittent pulse was just asking for another visit to the emergency room, but nope, no reaction at all (apart from the taste of the flagyli and the sour stomach that it gives me).

I "scored" some more flagyl (since I having to do this without a prescription, the drug deal slang seems appropriate) so I can now do six more intermittent pulses.  So, I guess I can look forward to next month.

For those of you who went to Sunday school...

Join with me in singing (to the tune of "Oh, How I Love Jesus"):

Oh, how I hate hydrazine

Oh, how I hate hydrazine

Oh, how I hate hydrazine

Because it upsets my stomach.

First session of intermittent therapy nearly completed.  

I am just going outside and may be some time

My "stash" of antibioticsi is nearly depleted.  I have enough left to do two occasions of intermittent treatment and then that will have to have been sufficient.

I will continue the supplementsi (including NACi).

Those of you who recognize the quote will understand the desperation to find an effective treatment that led me here as well as my fear that I may be stopping just short of the depot with disasterous consequences. I do not in any way seek to connect my present circumstances to the quote's spirit of self-sacrifice.


With Apologies to Barbara Streisand


People who need Doctors

Are the sickest people in the world...

Now, I'm not trying to start a controversy here about the fact that there sick people who don't have access to medical care, just trying to come up with a subject line based in popular culture that is at least somewhat obliquely related to the subject of the post and might keep me in contention for the Bulwer-Lytton prize.

Anyway, some time ago I went to one of the Lyme disease sites and downloaded the names of some doctors who are willing to treat patients with antibioticsi

Unless All Dream Alike, You Must Not Ask Them to Remember It

I had an MRI in January 2009.  The M.S. specialist ordered it because I have been having mild headaches at the top of my head that precede things "happening". 

  • For example, I had a headache that came on before I temporarily lost my ability to write a cursive "D" (and hence lost the ability to sign my name).
  • I also had a headache come on and when it had passed, my need to get up at 3:00 a.m. to go to the bathroom had all but vanished. 

The MRI was done:

Wanted to get this in before vacation

Well, pulse #19 was so mild that I wanted to get the next one in before starting vacation.  Pulse #20 was completed on 3/12/2009.  I'll be really surprised if the post-pulse reaction sends me to the emergency room in Hot Springs.
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