Sunday, November 16, 2008

Page turner

I should be asleep. But I bolted out of bed, restless, driven and obsessed. How did I end up in the middle of this maelstrom, and where is it headed? I did not choose this disease: It chose me. The story unfolds. A drama. A Robin Cook novel. Only this time it is real. The patients are real. Their illnesses are very real. Dr. K from Clongen calls me and says: "D These are the sickest patients I have ever seen. They look barely alive." I know. One has spirochetes swimming in plain view on a slide made of his blood. Others have blood swarming with mysterious bacteria. Most are young people struck down in the prime of life. They fumble for words which do not come. Their thoughts are scattered and lost in the fog. They get confused and disoriented. Their muscles are weakened and no longer support their weight. Their bodies are consumed with pain. Mysterious shooting pains. Muscle pains. Joint pains. Strange sensations, numbness and tingling and loss of sensation and balance afflict them. Strange fevers and drenching sweats punctuate fragments of disordered sleep. Unbearable headaches without relief. A slow, creeping, silent plague wanders the earth. The silence is deafening. Medical journals flow to my office daily. Nothing. The same list of banal illnesses and therapies is paraded out week after week. There is no mention of this strange and mysterious plague which is eating away at the fabric of so many lives.


Like all good novels, this story has a beginning, a middle and an end. Where do we stand? First chapter I suspect. It has all the trimmings of a medical thriller. There is a deep mystery. A terrible disease is disabling and killing people in plain sight and yet no one seems to notice (or care?). Just like in a Robin Cook novel, unexpected and unassuming protagonists emerge unwittingly, swept up in a drama which they did not seek. And despite this, these unlikely protagonists are compelled to see this thing out. Politics and egos obscure a search for truth. There is a foreboding sense of a deeper conspiracy. Danger signs are everywhere. Yet the protagonists trudge through the mine field laden terrain. The plot unfolds daily in unexpected ways. We turn the pages of this crazy novel, caught up in a world of swirling spirochetes, blood parasites, mysterious bacteria and a spreading dreadful plague. A nail biter. A page turner. Yet unlike a Robin Cook novel, this one is real. Hang in there: we are still in chapter one.

13 comments:

sukey said...

I hope this story has a happy ending.

Grateful said...

Dear LymeMD,

This must be an incredibly difficult and challenging career for you. I just want you to know there are more people thankful for you than you can even imagine.

You have just started treating my dear sister. She is very, very sick and has been long-misdiagnosed. You are the first doctor that has taken the time to look deeper into her situation and help start solving the mysteries of the disease in her blood.

My sister has hope for the first time in many years. So do I.

As we near this Thanksgiving, I am thankful for you~and for doctors like you~who make a personal sacrifice and perhaps take a professional risk to help others.

It won't be easy, but I believe the paradigm WILL shift in the diagnosis treatment of tick-borne disease.

You are a blessing.

Grateful

Grateful said...

That second to last sentence should have read: "diagnosis AND treatment".

dogdoc said...

Some of us are bacteremic and look fairly alive (smile). Although I know what you mean about the walking death look from watching my other half.

This is your catharsis. But is is nice to see from us other sometimes sleep deprived folks that wake up thinking the same types of things and share similar obsessions if you want to call it that. Makes you feel like you are not alone in your thoughts and there are other kindred spirits out there. I didn't chose to be in this either. I was dropped into the insanity of Lyme land. Sometimes, I inanely think- why like in the Matrix movies did I not chose the blue pill (actually forget which color it was that you get to wake up and go on blithely unknowing in the made up computer generated world being fed into your brain)? I know the answer- some of us are just not blue pill people. We cannot turn our heads and pretend that things do not exist even if by doing this, we have to deal with harsh unbelievable realities. And when faced with such, we are driven to find an answer. To stop the suffering. Even if we are about as blind as the folks fighting the machines in the Matrix. Somehow, this has morphed into my catharsis as well. I thank you again.
I think we are in chapter one as well. Endings in life are always bittersweet by the time all the twists and turns have played out. I guess I am an optimist-realist. I always am driven towards the happy ending but in an expect to fight it out until the bitter end way. I believe the answer is there and we will have to fight hard to find it and the solution. It is an uphill struggle and you look up and realize how deep the hole is that you are trying to find a way out of. How little we know. How far we have yet to go. Then you look at how far we have already come and all the possibilities for places to go. And that going back down and giving up is not a personal option. I wonder what it would be like to be a blue pill person?
Nice to have a place to slip off into the innane sometimes.

lymebytes said...

I was really hoping we were a bit past chapter 1 but in my heart I know we are not. With over 2 years of treatment starting from a bullseye rash and still so sick and testing positive I know its either a slow go or a no go for me.

lymebytes said...

If its a no- go I just want to know. I don't want false hopes.

MoreOrLesMe said...

I can say without reservation that my character in your medical thriller finds you to be distinguished by exceptional courage and strength. Before you came to my rescue I had given up hope of ever having a normal life. The medical community was convinced that my problems where psychiatric in nature. Sadly all of the magic pills that were given made my head even foggier. I’m pain free for the first time in more than 20 years without any pain medication. I feel so much better that it’s hard for me to put it into words. I feel you are a God send and possibly saved my life. I hope someday I can return the good that you have done for me.

dogdoc said...

I for one am not about to let me or anyone in my family be a statistic without a really big fight of however many years it takes! I am so sorry you have had a bad go of it so far- my husband was really sick and I can't even imagine how horrible it is. I can guess alot from what he's said. I really do think we can figure it out if we just don't give up and start looking at it in different ways. We all are venting emotions here- I don't think its hopeless. I won't speak for doc, but I don't think he does either.

girl Mark said...

Doctor, I sure hope you're writing a book on Lyme. I just started reading your blog from the early May entries on, and it's probably the best Lyme 101 on the internet. I'm keeping my fingers crossed that you turn this into something published.

lymebytes said...

What about this "lyme disease clone" recently discovered by Dr. Lund? There is a paper on this on CDC's website

DocJen said...

I am slightly more optimistic. (slightly) I think that Chapter 1 opened with a tragic scene describing people dying terrifying and painful deaths, with docs standing by shaking their heads saying "idiopathic -fill in the blank-." Or MS. Or ALS. Or...the list goes on.

Chapter 2 is when brave docs like yourself willing to question scientific cannon start looking for other answers, and trying alternatives outside of the mainstream box.

In this case, knowing the solution might be the ultimate goal. But getting science to start asking the question in the first place is a giant leap. In my humble opinion, anyway.

tyge said...

hi and thanks doc

just two things
1.About "chapter one".
Very precise as we dont yet know exactly what the bug is let alone anything about treatment options (chpt 2).the rumors from frylabs that it is a betaproteobacteria seems very promising.However one can only hope that a far greater openness would be part of the labs policy.

2.i have become more and more sick.The last year has brought traditional infections along.(Lungs).Some aspects of my findings seem as if they might be of relevance to the speculation about mystery bug.
a.Psudomonas and other gram-negative bacteria were found in sputum samples.
b.i have this strange immunological finding for cd20 weak b-lymphocytes.The only thing that can be found about this on the web are cases with systemic Pseudomas infections. -Nonsense or useful information?

tyge said...

forgot this.
IF the rumor is true- that the bug can be cultivated with arginine- this would make a very big difference for patints with our problem.
Hence my remarks baout openness.