Tuesday, August 24, 2010

David S Bell, MD | Lyndonville News


At this point, what's on the website is the newsletter he sent out last week, but I do expect some update soon.  Dr. Bell is usually right on target with his predictions -- he said 20 years ago that maybe the reason they weren't finding any organ damage was because it was something that wreaks havoc without damage.  Sure enough, then came the proof that the Central Nervous System is involved, and can cause all these different body functions to go haywire without causing any visible damage.
Last week, he wrote:
"Dr. Harvey Alter can find it, but his paper was held after being accepted by the very prestigious journal PNAS. Very strange happenings, and I hope that someone is keeping a very accurate diary of all this. ... On the negative side, perhaps there is an organized effort to marginalize XMRV, even if it is the cause of CFS, because it may be expensive to treat. We know that this has been done before, with the excuse being "good science". Personally, I would insist on good science, but not political science. Lets find out what is there. If XMRV is marginalized, it will be no more visible to mainstream medical practitioners than the 2'-5' A synthetase, RNAse L, blood volume, isoprostanes, IVRT, natural killer cell data, immune upregulation, and the many other good science that has been done on CFS. It is all meaningless if the patients never get to see the benefit of this science."
And it's true -- until I read Osler's Web, I didn't know what-all was already known about CFS because what the researchers know isn't getting to the front lines.  Treating doctors don't learn diddly-squat about it unless the patients educate them.  And, well, (1) I'm getting tired of having to educate doctors, and (2) some doctors will remind you that they have an MD degree and you don't, therefore why should they listen to you?
For a couple years, what self-help I was doing for myself (rest, pacing, natural supplements) was more effective than what the doctors wanted to do for me (anti-depressants and making myself sicker by "exercising my way back to health" -- one wanted me to go for a walk even on days I couldn't get out of bed without collapsing to the floor!).  Some of the stuff they tried to do to me (or make me do to myself) could've killed me if I hadn't been a well-educated patient who knew better. 
Nonetheless, everything I know didn't help me one bit because I couldn't write my own prescriptions and I wasn't finding a doctor willing to prescribe what I asked for; they all just wanted to dole out anti-depressants, and two of them insisted on prescribing something that I'd been told NEVER to take because of an adverse reaction to a related drug.  When I protested, I was told "it'll be fine"; the pharmacist refused to fill the prescription because it was NOT going to be "fine", it might be fatal.
So, yeah, we've got to get this information out of the lab and into the hands of every single doctor in the country.  Only then can it help people.
Dr. Lombardi made it clear over the weekend that if the doctor you're seeing is not willing to be educated, find a new doctor.  Unfortunately, I went through half a dozen of them and still hadn't found one who knew what he was doing nor was willing to learn what he should be doing.  Just like with marriageable men, "all the good ones are already taken" -- the only doctors in the medical group accepting new patients are the ones no one else wanted.  (And we have a large, very religious, immigrant community here, such that in some medical groups, only those with religious proscriptions against male/female interactions are allowed to sign up with the limited number of female doctors in the medical group because there simply aren't enough female doctors to go around to all the women who want someone to take us seriously.)
My current doctor, who is willing to treat me and a couple of other patients, is not willing to become a CFS specialist.  I've tried inviting him and/or his staff to CFS seminars, even offered to pay their way, and he's not interested.  Take good notes, mail them to us, we'll put them in your file for reference, but no, he does not want to be overrun with CFS patients seeking a miracle.
At least now, when I'm asked for a referral, I can tell people to take Amtrak up to Reno to be seen at WPI.  It's an $80 round trip, and the scheduling is awfully tight if you're planning to go up and back the same day, so you'll probably have to pay for meals and a hotel.  But it's better than nothing ... unless you're not married and the cost of the trip and the appointment exceeds your limited income. 

1 comment:

kp said...

getting tired of educating myself too! currently wading through osler's web properly for the first time - scary and enlightening.