Monday, November 16, 2009

Love to SpiroChicks

"M" gave me permission to share this email she sent me last week. It feels good to know that our writing here is not in vain.

Hi Kim,

Read your story on SpiroChicks and just wanted to say the whole blog the team of you girls has going is great, I feel for you and your story. I am about to start a blog (as soon as I appeal all my insurance denials and appeal my disability benefits which have been denied for two years and thrown me into $60K medical credit card debt). I am 32, live in San Francisco, but just "moved" home last week to stay with my parents in cold Michigan until I can get back on my own two feet on my own physically and financially. It feels permanent--I gave up my apartment and life in SF, but my stuff is in storage and I know I will be back, just not sure when.

I love what you all have done and oh, how it's pained me for two years to feel like an 80-year old lady and go through 15 docs like I am sure all of you have and been called crazy until I got my diagnosis of Lyme and all co-infections last summer. But as you say beautifully in your profile page, to be grateful for so much that we took for granted is one of the gifts of this disease. Well, SOME days I think that and others I curse and cry and throw things at the wall.

I was, well am a civil rights/nonprofit attorney, but of course that's been on hold for two years. I just thought I'd introduce myself--always nice to know others going through this crazy journey.

I'm on month 14 of treatment (eight months drugs, six months herbs in between) and feel I've just turned a corner the last two months. For the first time, I could walk 45 minutes (only once but I did it!), even go on dates, go to loud places, cook and clean and take care of myself and drive around and be SORT of functional sometimes. So it's been bittersweet having to come back to live with my parents and wear my pajamas all day and feel isolated again. That's why I am really looking forward to blogging soon. Anyways, just thought I'd send an email. Thanks for giving inspiration to others. 

Hoping this finds you well, or even OK.

"M" from San Francisco

Sunday, November 15, 2009

Who even knows anyone who’s had Lyme?

Every morning I check my email. there is always at least one Google news alert regarding Lyme disease in my inbox. Generally the articles hardly pique my interest. Half the time they are not even about Lyme disease at all.

This morning was no different, the article was called, Swine Flu: How not to be Stupid. It was essentially about being safe and smart about protecting yourself from swine flu. I have to admit, the article is not a bad article at all. It is simple, to the point and despite the topic, fun.

Except for this jab in the third paragraph-

…More people have died from Lyme disease in the last 300 days than from swine flu. Who even knows anyone who’s had Lyme disease…

EXCUSE ME! “Who even knows anyone who’s had Lyme.” Well OK, I have to admit that I actually did not know anyone who’d had Lyme before I got diagnosed, but that is because of ignorance. Exactly like this statement, written out of ignorance.

Now if you know me or if you have been following my blog for any amount of time, you know that I am all about staying positive and this may seem totally out of character. Well, I was angry. I believe that one of the main problems Lyme disease is faced with is ignorance. The lack of awareness and education of the disease is appalling.

I decided to write a letter to the editor to tell her how I felt and suggest she and the author spend some time becoming educated about Lyme disease.

Then I went and harassed my twitter friends until they started re-tweeting (RT) my call urging, or I guess after so many tweets I should say demanding, they also write to the Editor. Thanks Tweeple.

Now here I am urging you to do the same. It does not have to be a response to this particular article, but I encourage you to respond to articles you agree and disagree with to help spread the word about Lyme disease. If there is no media interest in the topic there will be no change. We need our voices to be heard. We need to be a part of the Lyme education process. No one knows more about the realities of our disease than we do.

side note: I do realize that the article in question is from a Student Pulication of a University. I do not see that as a excuse for inaccuracy. I even see it as an added positive, we have just educated some of tomorrow's Journalists about Lyme.

Friday, November 13, 2009

Money Can't Buy Me Love...but it might buy health

I had three good days in a row this week. Less pain, more energy, productive. I don't know what to attribute it to. Could it be the Cipro I just added to my drug cocktail? (I've now on the most antibiotics I've been on at once to date: Doxycyline, Cipro, Zithromax, and Plaquenil.)

Could it be the Scaler Home Protection System that after a month, I finally plugged in the last step and is running full force to minimize my exposure to EMFs?

Was it the green drink I had Sunday night? Is it the swim I had on Monday or the time I spent in the sauna on Tuesday? How about the tweaks I made to the 50-something vitamin and supplement pills I take daily? WHO KNOWS.

But now that I've had a taste of the "good life" for a couple days, I'm ready to do whatever it takes to feel that good again. My LLMD wants to do the PICC line and Rocephin. I'm ready, but my finances are not ($1300 for the PICC and $800 a month for six months or more for Rocephin).

In this case, as I can imagine with every other Lymie, money can't buy happiness, but it just might buy health. I'll start with believing that somehow it'll happen.

Tuesday, November 10, 2009

Cured by Lyme?



Lyme the great impersonator. It can get in to every cell in your body; brain, blood, organs. It can hide itself from the immune system. It can cause symptoms that mimic all sorts of other ailments. It can even effect the nervous system. Borrelia and it’s side kicks, Babsesia and Bartonella (among others), are on a mission to invade and conquer.

What if we could infiltrate their armies and take them down from within? Imagine harnessing their evil powers for good. Borrelia would be forced to rewire the nervous system instead of short circuiting it, and babesia to clean the blood instead of infecting it!

Sounds way too far fetched right? Well, maybe not.

Experiments have proven that bacteria can be manipulated and reprogrammed! Did you know that genetically modified strains of E. coli are being used to produce anti-malarial drugs? Scientists have genetically engineered a virus called M13 to mimic nerve tissue and promote re-growth. They envision using this “viral scaffolding” to help the paralyzed. Bioengineers envision a day in the not so distant future when microbes instead of causing disease, will be used to cure us of disease. (1)

Generally speaking, the idea of genetic modification scares the bejesus out of me. Most of my concerns stem from the fear of biological weapons and just plain old greed. Not to mention the theories and admissions that governments around the world have experimented with borrelia as a biological warfare agent.

There are two sides to every coin though. You cannot ignore the potential benefits of genetic modification. There is undoubtedly good to come from these biological advancements.

On the completely innocent side, is this story of Biological Engineering Students at MIT.

The students were stuck in a lab for hours waiting for E. coli to grow. B-o-r-i-n-g, and apparently, E. coli does not smell very good. It stinks, like poop. Tired of spending hours in a stinky lab, the students decided to remedy the situation by pulling the DNA out of a cell from a petunia plant and putting it into the E. coli cell. Instead of smelling like poop, the E. coli and the lab, now smelled like wintergreen!

This all makes me wonder about the possibilities for Lyme when it comes to the Western Fence Lizard. Have you heard about this fantastic creature? Something, entomologist suspect a protein, in the lizards blood kills the Lyme disease bacteria in the bellies of juvenile ticks! These ticks are no longer infected. They might still suck your blood, but they will not give you Lyme. (2)

How fantastic is that! I am all for harnessing the power of that protein, modify away! I think in the mean time, I might get a few as pets.

SOURCES:
1. Kean, Sam. “The Quadrillion Bug Inside You” mental_floss Nov-Dec 2009, 39-41
2. Russell, Sabin. “Lizards Slow Lyme Disease in West” SFgate.com April 1998
The story of the students at MIT comes from an excellent podcast that also weighs the pros and cons, the fears and fantastics of messing with Mother Nature. It is called, (SO-CALLED) LIFE from WNYC radiolab.org


This post was cross posted on Ashley's blog lymenaide.com

Sunday, November 8, 2009

SpiroChicks raise $2k for Turn the Corner Foundation



SpiroChicks (from left) Kim, Alix, and Ashley participated in the First Annual Bay Area Walkathon for Lyme disease on Saturday. Thank you, thank you to our generous donors.

Benefiting the Turn the Corner Foundation, we are thrilled money will go to programs like:

Distributing the award-winning documentary, Under Our Skin: TTC is the film’s official outreach partner. Getting people to see Under Our Skin will spread awareness about the emotional, social, and political battle of Lyme disease.

Training doctors: TTC’s physician training program provides medical practitioners with the opportunity to study with Lyme-literate doctors and bring that knowledge back to their communities.

Grants: TTC funds research on the treatment and diagnosis of Lyme disease including Dr. Alan MacDonald’s research on biofilms and their role in antibiotic resistance and the link between Lyme and neurodegenerative diseases like Alzheimer’s.

You can still read our personal Lyme stories or make donations to TTC through Alix and Kim's fundraising pages.

For more information on the local Bay Area walk, visit MyLymeMission.com. If you’d like to find a walk in your area or volunteer to plan one, check out TTC’s Create Footprints.

Tuesday, November 3, 2009

Lyme pushes you...

In Under Our Skin, there’s a scene where Dana, one of the Lyme patients being followed, says, “Lyme pushes you to…What do you want? What are you living for? It’s not enough just to be alive.”

I’ve had my share of days like that. I had a day like that this last Sunday when a perfect storm of a pain--physical and emotional--collided with the unrelenting demands of motherhood and marriage. (It didn’t help that I stepped in cat poop for the third day in a row).

And so I ran away like every crazed mother dreams about now and then (don’t they?). I got in the car and took off. I got as far as the gas station and while it pumped, attempted to rationally consider the options.

It came down to this: I could run away from my daily life, but I couldn’t run from Lyme. And while Lyme makes my life very hard, physically and mentally, my family is what makes fighting it worthwhile.

So, when my sweet husband called for the fifth time, worried, not angry (bless him). I picked up his call and I headed back home. Back to his arms of love and the little lights in my world.

There's an update about Dana from the film on the Under Our Skin blog. In her conclusion, she gives me hope:

After ten years of Lyme, I’ve cleaned up and simplified my life. I have retreated deep into my soul and now I stand guard for everything that goes into body and mind. Whatever I have lost to Lyme I have gained ten-fold into my spirit.

Life is coming back to me and I am so grateful.


This was cross-posted to gratitude365.