Wednesday, November 6, 2013

Hill Park Report Card: My first follow-up and my kid's initial visit.

Right at the top I want to say, HOORAY!

Something most patients take for granted, but it feels miraculous to an ME patient: a specialist who tests for the right infections and treats them.

Further, something too few patients get: a specialist with long experience in both conventional and alternative approaches.

And beyond that, Dr Bouch and all the staff at Hill Park Medical Center make every effort to find the most affordable route to tests and treatments that would otherwise be far beyond my insurance and budget.

So, as midterm grades are getting reported in universities, I will offer this report card regarding our care at Hill Park.

Informed: A

Doctor Bouch cites experts and studies including very recent information from the broad field of neuro-immune disease and incorporates them in his testing and treatment.

Open-minded: A

When brought a study or publication that he hasn't read, Dr Bouch will review it carefully and give you feedback on it.

Affordable: A+

Already charging lower fees than other experts for office visits, Dr Bouch and his staff make extra efforts for the most impoverished patients, finding adequate tests and treatments that will be covered by our meager health insurance.

Sensitive: A+

Dr Bouch and the Hill Park staff are sensitive to our sensitivities, offering low light, a place to lie down while waiting, a cup of tea during our visits. Even my severely-ill kid made it through her appointment in relative comfort, finding herself able to talk directly with Dr Bouch much of the time and only needing to refer to me for the answers to a few of his questions. That is an excellent endorsement of his bedside manner.

A specific example: Seeing how ill she is, Dr Bouch decided to forego a POTS test that would doubtless have had her reeling with intense post-exertion neuro-immune exhaustion. He's capable of taking her POTS-type symptoms into account in treatment without having to torture her for confirmation.

Patient and Thorough: A

Each appointment leaves me with a whole lot to absorb and no matter how I try to take notes, I wind up with follow-up questions. Everyone at Hill Park has been excellent about responding to my phone calls and emails, following through with tests and prescriptions, and explaining things over again if I didn't get it the first time.

Effective: A

Noting that these are just midterm grades and it's early days yet --- we're not ready to confer a diploma with honours --- still, it seems our new specialist is on the right track. I have still had down days with the up days and a few complete crashes, but all in all, since I began seeing Dr Bouch I have had far less pain and far more energy, and a far more optimistic view of light at the end of the tunnel, or at the very least partial visibility.

That's all I can write for now. I will try soon to catch my readers up on specific tests and treatments though I'll give again the caveat I've given before: I'm not up on the science, I don't understand the interactions of all these methylations and mitochondria that muddle in my ME mind, so this won't be the blog that you keep beside you in your home laboratory with its limbics all a-bubble. Wait, a limbic is not one of those cool glass pots in the mad scientist's inventory, among the crucibles and coils? Okay, time for me to sign out, whatever it was I meant to say... as you can tell. I've got a long way to go before I'm well but for now, a hearty endorsement of Hill Park.

Muddy Waters: the IOM to the rescue, not.

With about 25 years of efforts by some agencies to muddy the waters, while other agents and entities strive to avoid the voodoo and get some serious science done despite many obstacles, it's no wonder there's no one solid definition of ME broadly accepted.

Obstacles include pseudo-science perpetrated by the psychopharm lobby that wants to keep us all on expensive drugs that weren't designed for, and don't work on, ME. Also misconceptions of the nature of the disease, planted, perpetrated, perpetuated, ppbpblpblphh, by the CDC, haven't helped. Their definitions have only stirred up more mud.

And an accurate definition is literally vital: of life-and-death importance. How can a disease be researched, diagnosed or treated if it can't even be accurately described?

Personally, I have become incapable of following the science or the politics of ME. I try to share what has been helpful for me and my kid: info on a good doctor or a pain relief method, stuff close to home. The big picture is way beyond my ability to absorb and still manage to do the day-to-day. Life lately is about medical appointments, insurance denials, treatments, and of course the ongoing struggle to afford not only health care but housing, utilities and transportation. Life is one kid in college on the opposite coast, while the other kid is mostly in bed upstairs in pain. Life isn't allowing me time to understand and share what's going on in the wider ME world.

But I couldn't help hearing about the latest controversy, regarding the IOM. A new acronym to me, it stands for Institutes of Medicine. It seemed they were going to work on a new definition of ME. Good, right?


As it turns out, the IOM has a bad track record, and is being paid big bucks to re-do badly what others have done better, before. This article helped me get out of the "confused" camp on the question.  So I am blogging mostly to share its helpful explanation, but also to make a couple notes regarding things I have shared in the past in this blog.

I know that I have referred at least a couple of times to the International Consensus Committee's criteria and primer on ME. (Two different things but coming out of the same group.) Those, as it turns out, are flawed in several ways: the ICC is muddied by references to the since-debunked XMRV, the primer fails to mention the frequency of HHV6 infection and possible benefits of treating for it when it is found, the ICC falls short on discussing pain while overemphasizing fatigue and the primer recommends GET which has actually proven harmful to ME patients... yes, a valiant effort but seriously flawed.

 According to current ME patient community consensus (MEPCC?) the best existing definition -- which could simply be adopted instead of spending wads of money on a new and probably flawed definition -- is the Canadian Consensus Criteria, on which the ICC definition was based. So contrary to my earlier recommendations of the ICC, this CCC might be the best thing to share around. For now.

In short, with little recourse or resource, we with ME remain in a ghetto of pain and brain-drain, while the money that should be spent on solid study is squandered to make the waters more muddy. We'd maybe do better to go down to New Orleans with Mr Muddy Waters himself, and get us a mojo hand.