Monday, September 24, 2012

more reasons to hang on to a good doctor

i've been meaning to write but things have been extraordinarily rough.  this morning, i forced myself to take care of some business, financial, medical, and the spots on the kitchen floor.  that kind of thing.

also, chasing one buddy the freakishly large kitten who had what we politely call a "cling-on," a game that he found hilarious, but which induced need of a nap in me.  the expedition was a success, i am glad to say, and buddy is now allowed back on the bed...  where his twitching, dreaming self suggests that he is reliving the fun of ridding his derrrière of stray matter.  his huge paws are twitching...

there have been many mentions in this blog of my MDVIP go-to-guy.  at my most destitute, i came up with the money to keep him as the center of my medical "team." he's just that good.  you can read about MDVIP HERE.  i cannot vouch for anyone save my guy, of course.  there are some things about the system that i still don't understand, but that's about average for me, and probably won't be an issue for smarty-panted old you, dear reader.

but i ask you, how many of you have doctors that would field an email such as this one, that i just fired off?  he's told me that he lacks time for extra research into biofilm infections and -- like everyone -- is stymied by my extensive CRPS.  that said, he's asked me to forward to him references and my "takes" on journal articles that my astute judgment deem possible sources of actual action.

gracious?  the man is gracious -- even if it is mostly the epitome of a polite and sympathetic blow-off.

this morning's email:

need order for annual echo + med adjustment + consideration for more medication adventures
2:15 PM (18 minutes ago)

to X, X  bcc: me


since insurance is at 100% coverage, i thought i would try to knock off any annual testing before the end of 2012.

  • the most important thing to me is the annual echo. i called dr. w's office and they require dr. MDVIP's referral/order.  would you please ask them to call me to schedule the appointment? 

i also just pre-ordered most of my meds for the rest of the year, some rx have expired or need renewal, so i apologize in advance for the flurry of faxes that will be coming your way.  

  • through experimentation, i've come to believe that taking two 200 mg generic plaquenil helps with bone pain better than just one.  if it is okay with you (and please pardon the experimentation), could the rx be changed to that dose amount?  i have never tried MORE than 400/day... ?  anyway, this is the rx#  if you want me to stick to 200 mg/day, i surely will, in which case no changes are required at medco.   200MG  Rx# X

things are pretty miserable around here, mostly due to pain, spasm, fever, sweats, no sleep or too much -- otherwise known as "the usual"!  

  • before the end of the year, i'd like to have my blood rechecked, if that makes sense, including sed rate and c-reactive protein.  i won't be returning to infectious disease dood who usually does the blood work as a matter of course.  would/could you order through quest, as there is one near our manor.

a piece of confidential health care cost gossip?  infectious disease dood's office has garnered over $275,000 since JANUARY.  can you say "wretched excess"? i know the drugs are expensive... but, please...

i am trying to do the groundwork on biofilm infections but have trouble concentrating and most of the info stresses the wonders of prevention, and the best ways to identify bugs from implanted devices (once removed) -- which is all irritating to someone who is on the other side of the thing.

  • i am very interested in trying "drugs that work through TNF-alpha blockade" -- as there are many abstracts out there pushing for more studies of these biologics in CRPS -- going after the inflammation, i guess.  i am ready to skip the studies and go right to giving something an "off-label" try.  or maybe something like enbrel/remicade/humira wouldn't even need to be "off-label"?  how's about thalidomide?  i am wondering if my insurance would be suitably impressed just by a history of my c-reactive protein scores as justification... that'd knock their insurance socks off!
  • i am also wondering if it is worth restarting "bisphosphonate-type compounds such as calcitonin, clodronate, and alendronate" -- which we stopped because i had been on them so long. i've been off of them for well over a year now.  if yes, and they're all pretty much the same, my preference is for the cheapest! i'm doing my best not to bankrupt the country, though clearly, it is too late.
  • if we scratch off methadone and ketamine, there are still some NMDA receptor antagonists i haven't ingested, namely amantadine, memantine, dextromethorphan (did you suggest this to me once?).  the discussions (anecdotal patient message boards) i've seen for dextromethorphan have a huge range of doses, but all recommend "compounded" versions rather than OTC which has alcohol in it.  amantadine seems to be used for neuropathic pain pretty frequently...  memantine's best study included a huge cohort of three patients, so i dunno... you gotta love the investment big pharma is making into CRPS.

Clin J Pain. 2006 Jun;22(5):425-9.
Pharmacologic management of complex regional pain syndrome.
Rowbotham MC.
UCSF Pain Clinical Research Center, Departments of Neurology and Anesthesia, University of California, San Francisco, School of Medicine, USA.

Few randomized controlled trials of oral pharmacotherapy have been performed in patients with complex regional pain syndrome (CRPS). The prevalence of CRPS is uncertain. Severe and advanced cases of CRPS are easily recognized but difficult to treat and constitute a minority compared with those who meet minimum criteria for the diagnosis. Unsettled disability or liability claims limit pharmaceutical industry interest in the disorder. Many studies are small or anecdotal, or are reported on only via posters at meetings. Targeting the process of bone resorption with bisphosphonate-type compounds such as calcitonin, clodronate, and alendronate has shown efficacy in three published randomized controlled trials. Intravenous phentolamine has been studied both alone and in comparison to intravenous regional blockade or stellate ganglion block. Steroids continue to be administered by multiple routes without large-scale placebo-controlled trials. Topical medications have received little attention. There has been considerable interest in the use of thalidomide and TNF-alpha blockers for CRPS, but no published controlled trials as of yet. Numerous other oral drugs, including muscle relaxants, benzodiazepines, antidepressants, anticonvulsants, and opioids, have been reported on anecdotally. Some therapies have been the subject of early controlled studies, without subsequent follow-up (eg, ketanserin) or without an analogous well-tolerated and equally effective oral treatment (eg, intravenous ketamine). Gabapentin, tricyclic antidepressants, and opioids have been proven effective for chronic pain in disorders other than CRPS. Each has shown a broad enough spectrum of analgesic activity to be cautiously recommended for treatment of CRPS until adequate randomized controlled trials settle the issue. The relative benefit of oral medications compared with the widely used treatments of intensive physical therapy, nerve blocks, sympathectomy, intraspinally administered drugs, and neuromodulatory therapies (eg, spinal cord stimulation) remains uncertain. In summary, treatment of CRPS has received insufficient study and remains largely empirical.

your natural reaction will be that some specialist somewhere should look into all this and do any prescribing.  excuse me while i giggle, because there just aren't any brave souls lining up to help.  i am going to try to make an appointment with the hawaiian-shirted neuro-guy , but am pretty sure he no longer wants to deal with me, either. this may seem an odd complaint, but he tends to over-medicate me...

sorry to cram so much into one email.  please take your time responding, there is no rush (except for scheduling the echo and correcting the plaquenil, if that's okay).  and if you ever want to charge me for an office visit as part of dealing with such an email, i'm good with that, you brave, brave doctor man.

take care,

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