hdwhit's blog

Seeing yet not Perceiving

Submitted by hdwhit on Fri, 2011-03-04 14:08

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?

Submitted by hdwhit on Wed, 2010-09-15 20:55

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 antibiotics 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 CAP, 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

Submitted by hdwhit on Mon, 2010-02-01 11:53

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.  EDSS 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 antibiotics.  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

Submitted by hdwhit on Thu, 2009-11-19 23:14

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 CAP, 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?"

Submitted by hdwhit on Thu, 2009-05-21 21:34

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 flagyl 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.

I am just going outside and may be some time

Submitted by hdwhit on Mon, 2009-03-30 12:36

My "stash" of antibiotics 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 supplements (including NAC).

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

Submitted by hdwhit on Mon, 2009-03-30 12:10

People

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 antibiotics. 

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

Submitted by hdwhit on Mon, 2009-03-30 11:00

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: