Lyme & IDSA Criminal Conspiracy

 I got a new doctor at the end of September and in 72 hours flat I was ready to go back to work full time. I’m thrilled by that, but I am still dangerously sick, so much so that a small mistake can tip me from seemingly normal into a dangerous place where I am physically and mentally disinclined to care for myself.

   I have a regimen of several antibiotics which change about once a month. I fumbled the switchover mid February, losing a big chunk of Valentines day. I’m writing this after a three day antibiotic break to see how I feel, having just started a mixture of clarithromycin and plaquenil moments ago.

 So … here’s a peak into what life is like with chronic Lyme. And a deeper look at what it could mean for health care reform.

 I got up today around 9:00 AM … and didn’t eat a thing until 3:00 PM. I just got a new blood glucose meter – trying to chase down why I’ve been feeling so nasty, thinking inflammation may be sugar related. My fasting blood glucose is mid 90s, just a tiny bit high for me, but I ate something sugary, waited two hours, and it was 180. I’ve never been able to get it above 130 before. Simply not eating is a tactic required at times to avoid losing an entire day to fatigue. And this is true even though I’m the author of the Chronic Tonic entry Forceful Fatigue Fixes.

 A bad Lyme day is: Can’t feel hands, feet, face – transient peripheral neuropathy. I guess this is like what diabetics get, for me it comes and goes and it’s correlated with fatigue. Dysautonomia – digestion has been a constant hassle for me since I got sick, when things get bad I have thermoregulation problems, and when they’re really bad there are cardiac effects. Today is a clear up to cardiac effects kind of day. I came up out of a fatigued sleep with my heart racing, mentally disoriented, balance troubles, hands shaking, etc.

 I hiked a couple of miles round trip in the freezing (that’s a relief from subfreezing, was a nice day out actually) weather to go to my favorite Mexican place. I ate and then continued to sit there, lost in a book I’d brought with me, until I started to nod off. This wasn’t a pleasant, post meal nap coming on; the fatigue demon had me in its grasp and I was a thirty minute walk from home.

 Thankfully the symptoms abated as soon as I got moving. I don’t know what it’s like for others, but this digestive driven fatigue stuff is strange – if I’m up and moving I feel pretty good, but if I sit and try to do something intellectual I can literally slip from chair to floor and lose an hour or two laying in the cold before I can gather myself enough to climb into bed. That scenario was precisely what happened this afternoon after I got home.

 Lyme comes in three forms, a syphilis like spirochette, a hardy cyst when it’s placed under stress, and a cell wall deficient shape that makes biofilms. It hides in low blood flow areas and one of those is the back of the eye. My eyes go dry, my vision goes blurry, and Visine can help, but the final solution is sulfa eye drops, which I am going to break out right here before I add any more to this story.

 OK, so at 4:00 today the three steps from my chair to the bed was two steps too far. I slipped out of the chair to one knee, rolled over to my yoga mat, and I lay there thinking it was cold. It was dark when I stirred enough to make the end of the bed and pull covers over me. Around 10:00 PM I’d been stirring fitfully for an hour or two and I got myself upright through sheer force of will. By this time I knew that three days off from antibiotics was one day too many.

  So there I was, sitting at the end of the bed. I could easily have given up, curled back up, and lost the rest of tonight and maybe the work day tomorrow, too. The packet from the doctor that I have to refer to before taking anything new was four steps away on the other side of the desk, the bathroom is six steps the other direction. I had a bit of luck here, I’m into this phase where I’m supposed to start alternating two sets of two drugs and I’d already lined the second set up in the cabinet. I went in and got one of each, then I spent five minutes with Google trying to figure out if I should eat or not before taking them. I couldn’t find the information I wanted, so I just popped the pills. I’ll nibble something if I don’t like how this feels.

 I made the epic journey across this studio room and pulled a low carb Monster out of the fridge. I’d left a five hour energy shot sitting out – I keep one in the side pocket of my backpack, this one was a refill I’d not yet zipped into storage. We’ll keep in mind that I injected 100 units of B-12 around 2:00 PM today …

 So, I’m writing this,  900 words so far in just 30 minutes, with shaking hands and not enough energy to lean down and dig out my Blackberry out of my pocket, despite the fact that it’s been ringing the whole time. I posted something to Twitter about being disoriented and I’m guessing it’s someone worried about me. Getting that phone is the same motion that got me a couple of hours of laying on the yoga mat, which I think I’m past, but I get … funny … about talking to/seeing people when I feel like this. Maybe it was those years of “but you look so good.” I might look fine, but I’m not fine and I get tired of explaining it. OK, I’m explaining it here; I get tired of debating it face to face, and some of that is when I am feeling like this I’m extremely combative.

   Seriously, get the hell out of my way  – haven’t been in a fight in probably twenty five years, but I get caught in line at the store behind a little old lady digging for coupons when I’m like this and she could end up needing an orthopedic surgeon. I first experienced this in 2007 and it’s just so not me temperament wise. I read a tiny bit about ‘Lyme rage’ last year and it all fell into place – some people get this disease and they end up dying in prison from complications after assaulting someone.

 And if I were going to hit someone, I’d hunt up one of these scumbags from the Infectious Disease Specialists Association, kick the shit out of them, and them handcuff them to a tree near Chapel Falls in Massachusetts for an overnight stay. That area is crawling with Lyme infested ticks and I’d like to hear one of these sleazebags continue to assert that there’s no such thing as Neuroborreliosis when they themselves are wasting away from it.

  If you get Lyme, and if you can find a doctor who knows what they’re doing to treat you, you often can’t publicly share their name … because these IDSA shitbags, on the payroll of insurance companies and spouting junk science over Lyme, will attack your doctor, get their license pulled, and financially ruin them.

    So, you say health care reform is stymied? Let me give you a solution right here, right  now – stop dicking around with politics, stop jacking around with civil actions, and give this criminal conspiracy to Eric Holder.

   The denial of the reality of Lyme in this country is just as unbelievable as our climate change denialism …only the victims are plentiful, pitiful, and quite willing to assist in putting an end to the ASTONISHING corruption displayed by the IDSA. When you take the head off the beast dismantling the rest of it is a much simpler proposition – lock up the top five IDSA people involved in this, get a like number of insurance company chief executive officers, and we’ll see an entirely different attitude from the survivors.

 And those are the thoughts of this Lyme survivor on a Sunday evening.


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  1. May use all means, both peaceful and wrathful, in order to protect the maximum number of sentient beings. But I’m just a lazy householder …

  2. i don’t even know what to say…we talk well quite often and i know how ill you are sometimes…and i try to respect that when you’re not feeling well…but reading it like this…all i can say is {{{{}}}  

  3. read ur status update earlier but i was so damn busy with my greeroots diary i clocked out of gmail for most of the day. just got on twitter and so to this link. Damn. Damn. It just makes me so damn furious that you have to deal with this! Things seemed to be going well for awhile since the new doctor. So it was stopping the ABs that caused this horrid episode.

    This lyme’s sitution, I agree, so similar to the shit we have to deal with re Cders, federalist society supreme court justices, faux news, faux news. We have only the authenticity between us as negotiator of our sanities.

  4. this sounds so familiar.

    I’m still don’t understand why the IDSA panel members are not under criminal investigation. How many of us must suffer and die?

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