Lyme Disease is Serious Business - Part 2

Yesterday, I described a conversation that I had with a stranger in the parking lot across from our house. That was when the danger of Lyme Disease started to dawn on me. Today, I will post a note from our friend who has Lyme Disease. She was diagnosed shortly before my real introduction (as described yesterday). You don't realize how bad this disease is until you hear the details, so read all of this. That's an order.
______________________________

Hello to friends, family, clients-friends, and everyone who has touched my life in the last years,

For weeks now I have been intending to write this to you all. It is the story of a very healthy, active athlete (me), who, over the course of 2 years mysteriously dropped, free fall style, into a maze of wide ranging health problems that, to me seems (on a micro level of course) about as puzzling as the current economic bail out situation. Luckily I don’t have to overcome stubborn bipartisanship. Thing to be grateful for…

I want to prefix this following account with a few brief thoughts:
This is a bit lengthy, I know. And I understand if you don’t have the time or interest to read it but I did not know how to make it shorter without losing substance.

The reason why I share this information is to raise awareness, particularly, but not exclusively, among my athletic, outdoorsy friends who, like me, think that their real home is not their apartment or house but the trails of Mount Tam and who rely not least for their sanity on physical activity, thus a body, functioning at a pretty high level. I DON’T WANT YOU TO GET THIS, IT IS AVOIDABLE!!!

The second thought is motivated by a heartfelt sense of gratitude for living in the best possible and most beautiful place, with the best possible care, the best possible workplace (Presidio Sport Medicine), and the best possible support of my spiritual needs in facing this long term crisis.
And, last but not at all least, to all my good friends that I have neglected and not been very responsive to and in touch with over the course of the last 2 years, this has a lot to do with why….

….in summary, this is not at all intended to invite you onto the bandwagon of my ‘misery’ (I am not ‘miserable’ and trust that I have the spirit it takes to make it through this), but to let you know where I have been and to raise awareness about an underestimated, unbelievably under diagnosed AND hard to diagnose and treat illness, that can be crippling and fatal at worst and an extremely disruptive and challenging ordeal on all life levels at best. In all cases, however, (except for the ones discovered immediately after infection) it is certainly long term, expensive to the point of leading to bankruptcy for some.
So, thank you all for taking the time to read this, for your caring and your thoughts. I am convinced that what life is bringing to our gate does not exceed our capacity to deal with it. In that spirit wishes for peace and health to all of you!

*******

I have had this infection for at least 2 years before I finally found out what all the weird stuff was that was going on with my body. Why it felt like I had an alien living inside of me, tucking and pulling, stabbing and shooting and eating away at my memory and my joie de vivre.
I am talking about an illness brought to humans courtesy of the stupidest little critter imaginable: the deer tick: Lyme disease, or in medical terms: Borreliosis. Humans are accidental hosts to this uninvited party of miniature monsters, mostly because of the spread of ticks to urban areas via a growing deer population that has correctly identified the rose gardens of urban and suburban neighborhoods to be nutritionally more lucrative than your run of the mill, potentially dangerous wild forest.

The ‘otherwise’ so adorable and innocent looking deer carry ticks often in the hundreds or thousands nestled into the fur of their bodies. Some of them attached to the deer skin and feeding and some of them not. The ones not attached can fall off and migrate to other objects. They cannot fly or jump but can hang out on branches, grass and bushes and then end up on an unsuspecting human that happens to stride by, touching the lounging tick with a part of their body at which point the tick might be stuck to the person instead of the plant. (And, yes, there are unfortunately plenty of ticks on Mount Tam) It would be great if all ticks looked the way we see them in pictures: small, yes, but with a fat body. Except that they don’t, in fact the ones that carry the bacteria are the smallest and barely visible to the eye. They are about the size of a poppy seed or smaller. Now, not all ticks carry the various bacteria. If infected, the ones that do are the nymphs, i.e. teenager ticks, i.e. the small ones.

Lyme disease used to be mostly an unfortunate privilege of the East Coast population. That has changed. Most recent estimates show, that anywhere between 30-50% of the ticks in Northern California are infected with at least the borrelia bacteria, which includes Marin County ticks.
It is estimated to be the fastest growing epidemic, surpassing the spread of Aids, with the difference that Aids is recognized and accepted as a serious disease on all levels and funded by research, etc, whereas Lyme disease is not.That is changing, but very slowly, too slowly.
There is an incredible documentary about Lyme disease coming to movie theaters in March, called ‘Under our skin’. (Trailer at www.underourskin.com )It received several awards and recently played to a large audience at the Mill Valley Film Festival.

You might be understandably wondering: What is the big deal about Lymes? And what are the symptoms that are so bad, you seem to look OK…?

Ticks can transmit one or several bacteria and often do transmit more than one, which complicates treatment.With that, symptoms vary greatly depending on the type of infection and where it has chosen to travel to in the body, and not everyone with any or all of these symptoms has Lyme disease, of course.

I have Neuroborreliosis, which means that the buggers are camping out in my central nervous system (bone marrow), brain, eyes and probably in my joints as well.So basically, for the worst of it, (and frankly there are many more freakish symptoms but not as difficult to handle as these following) I deal with this: Some more and some less severe cognitive issues (some of them frankly scary), vision loss and eye pain (never thought that possible), memory loss, constant muscle twitching, trembling and involuntary muscle jerking, migraine head aches, tendonitis, digestive dysfunction, arthritic joint pain and stiffness migrating from one joint to the next, back pain that often keeps me in bed over the weekend and hormonal imbalances due to the immune system gone haywire.

The symptoms of the illness would be easier to manage if they had a pattern, actually they do have a pattern (in that they for sure always come back) but it is about as irregular and erratic as the behavior witnessed on Capitol Hill these days. This fact has made it sometimes tough for me to perform my work as a motivating, health inspiring, and energetic trainer with consistency. I am so grateful that my wonderful clients have accepted me even in my lesser states when I was struggling and have stuck with me through it all. So to all of you: THANK YOU!!!!!And while sometimes it is difficult, I know it is better to ‘fake’ it, instead of staying home and wallowing in self-pity, because it feeds back into having some sense of normalcy in my life.

Treatment:

Currently I am in the care of what is coined a Lyme literate doctor and I started a very intense treatment which, for the moment, includes mega doses of two oral antibiotics that I will be on for a minimum of 6 months to a year. They will be alternated with intravenous antibiotics, consistent with the findings that the bacteria, being the scary cousin of syphilis, i.e. same in shape, intelligence and properties, can morph into different shapes, hide and become resistant to treatment. All of this comes with risks and effects of course, as it always is with strong medications and to mitigate some of it, I have replaced my breakfast items in my kitchen pantry with at least 25 supplements and other medications that I take several times on a daily basis. I have considered making this a fulltime job…hahaha (-:

The antibiotics cause a toxic bacterial die-off (hopefully) and produce thereby, in unpredictable intervals a reaction called ‘Herxheimer reaction’ (mostly called a Herx), which basically makes you want to crawl underground and hang out with gofers. They can be very bad, definitely debilitating and last from 2 days to weeks. It is however a sign that the treatment is working, so it’s a bit like chemotherapy for Lymes.

My doctor is unable to specify or even ball park the impending annual cost of this which could be ranging from $30,000 to $100,000, since insurance does not feel responsible for what they consider experimental treatments, leaning on the guidelines of the CDC (more on that below for who is interested).I am lucky that I have work that carries me through this at least in part as long as I am able to perform it (so far so good), especially in this economy and I am very aware that things could be worse, I could be without a job, not get treatment, etc. So, thanks to the universe for that.
__________________________________

Dan here again. Tomorrow, I will post the rest of our friend's message. It includes some links to more information about Lyme Disease, and some good advice for avoiding the infection.