Thursday, December 31, 2009

New Year's Resolutions

I have been contemplating New Year’s Resolutions. How do you make resolutions when your life feels so out or your hands?

Well first things first, I have to stop thinking that way. It is my life and I am in control as long as I choose to be, and I do.

2009 was my first year diagnosed with Lyme. I was relieved to finally, after 10 years of suffering, know what was wrong with me. That relief quickly turned to fear as I immersed myself in researching what this diagnosis actually meant.

It was overwhelming. As you all know, Lyme disease is not an easy thing to have. It seems like there are not many set answers when it comes to this disease. It is mostly conjecture and more questions. Not only do we have to deal with having the illness, we are also stuck in the middle of a medical controversy.

For me 2009 was about learning. I want 2010 to be about curing.

My 2010 New Year’s Resolutions are:
  1. Get my health on one track. Balancing two doctors has become a major stress in my life. Starting in 2010 I am only going to see one doctor.
  2. Exercise. I am OK with starting slow, but I need to start something. I am going crazy with no activity.
  3. Move. I married my husband because I wanted to be with him, not five hours away from him.
  4. Work. Even if it is just part-time. This is as much out of desire as it is necessity.
The first step in turning my resolutions into realities will be discussing them with my doctor. He and I need to be on the same page when it comes to my health and my goals.

This is the first year I have ever made New Year’s Resolutions. I guess in the past nothing was ever as important to me as these four things are for this coming year.

I hope that 2010 brings you all progress in your Lyme journeys. I wish you all luck and thank you for your friendship and continued support.

HAPPY NEW YEAR!!!


Happy New Year
Happy New Year

Sunday, December 13, 2009

Am I Crazy?

“You are high strung.”

 “It is all in your head.”

“Everyone has off days.”

“There is nothing wrong with you.”

Were your first doctors as wonderfully supportive as mine? I’m sure that they were.

They ran tests and found nothing still they were willing to prescribed medications. Strange, I thought, why would they give me medication if they did not find anything wrong with me?

After 10 years I was diagnosed; Lyme disease, co-infections, viruses, worms, parasites, amoebas, protozoas, thyroid dysfunction, hormone imbalance…

How in the world did those other doctors miss all of that? Did they really think that I was just crazy? Well if they didn’t before, I am sure they would now. Sometimes even I think it is crazy.

Last week my doctor made me a homeopathic remedy for bartonella. He had me spit in a cup. He made a concoction out of my spit mixed with purified water and vodka. I now take four drops three times a day. Sounds like total hocus pocus. Well this is the second time I have been given the remedy. The first time I broke out with a huge bartonella rash. No denying that it works. That was all the proof I needed no matter how crazy it sounds.

Since diagnosis, and finding doctors who truly understand my illness and care about my well being, I have come face to face with quite a few “are you kidding me” moments.

I had heard about muscle testing so that was not such a shock. I am not going to pretend that I understand it though, it is weird! But, amazingly it is accurate, it works.

I have also done BioSet computer sensitivity testing, had my vitamins and supplements lazered into me, used a light machine to kill viruses and bacteria in my blood, ionic footbaths to detox, tapping to open up pathways in my body, and IVs filled with things like garlic and hydrogen peroxide to kill a blood born protozoa. You know people look at me funny when I tell them about it. They think I am NUTS!

The one thing I have not been able to get my head around was being told that my problem with garlic came not only from this life, but a past life as well. The lady told me I worked around garlic in that past life. I told her I was a vampire, it seemed just as likely to be the answer to me.

In addition to all these strange and curious therapies my doctors do use normal blood testing and medications. Are they crazy? Am I crazy to trust my health to these witches and warlocks? I don’t think so.

I have come to realize a few things from this journey. First, doctors do not have all the answers. The good ones will admit that. Second, our minds are capable of so much more than we can even begin to understand.

I also wonder why traditional therapies and herbs are discredited by most doctors and patients. Many of them have been around for hundreds some even thousands of years. Why do we put so much stock in modern medicine which does not have a very long nor very clean track record?

Am I crazy? No, just open to the possibilities and reaping the benefits.

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.

Thursday, October 22, 2009

Depression vs. Chronic Illness


I recently read an article about depression in a magazine. I was surprised how much the article resonated with me.

Sentences like, “The depressed make their world smaller and smaller until the depression becomes the centerpiece of their life”, really hit home. How easily could you replace the word depressed with chronically ill! Essentially, the “shrinking of my world” was prescribed to me by my doctor. He calls it “shrinking the bubble of my life”.

There was more. “Depression robs people of the ability to recognize others as sources of comfort…The depressed drain others and make it difficult for even the best-intentioned to be around them.” Wow, that is something I can recognize in my own life. Lyme disease is so hard to explain to others. I can feel the strain it causes on my friends and family when it comes to our relationships.

Have you ever read a list of “Symptoms of Depression”? Lack of energy, exhaustion, trembling hands, disturbed sleeping patterns, excessive worry, irritability, isolation, panic, worthless feelings, guilt, headaches, muscle pain, racing heartbeat, loss of appetite, excessive gain or loss of weight, loss of sex drive…

How do we manage to cope when the description of depression so closely resembles the life our illness imposes upon us?

Another relevant passage, “No type or amount of medication will build you a support network or make you more socially skilled. Good relationships are essential to establishing, maintaining, and restoring mental health”.

The shrunken bubble of my life does not seem to have much room left. It is only able to contain precious few things; me, my house, my doctors, limited family and friend interactions and, of course, my computer. I am not trying to shut myself away from the world. But what do you do when the potpourri of a store or the pitch of someone’s voice can cause physical pain?

Every dinner out with friends is carefully planned, even my doctors appointments are thought out. In addition to the pills and timing of meals, naps must be factored in.

We undoubtedly have reason to be depressed. But, we needn’t let the definition define us. We have a choice in whether or not we are sucked down into the depths of self-pity.

I read another article on the same day. This article suggested that it isn’t depression that is the problem with the “depressed”. The real problem is a lack of fun. If you are having fun, concludes the article, it is impossible to be depressed.

This new “illness” has been termed; Fun Deficiency Syndrome (FDS) or Lack of Fun Disorder (LFD).
While it may seem too simple or construed as belittling of people who legitimately suffer from depression, they have a point. You really can not be depressed if you are experiencing fun. It may only be glimmers here and there but they are real and in that moment of enjoyment you cease to be depressed.

For me fun use to be floating down a powdery slope with snow flying up all around me, climbing to the top of a rocky peak, eating and extravagant meal complete with a glass of wine and a beautiful dessert, traveling to all corners of the globe with nothing more than my husband and a backpack.
What is left of that life at present? Memories, photos, and longing. If I simply left it at that, I suppose I would be really depressed.

I choose not to be sucked down into the depths of depression and self-pity. I have carved a new life out of my circumstances. I focus on those things that I enjoy and spend the majority of my day pursuing them. I have “established” a support network filled with other Lymies who understand me and what I am experiencing. They really do help me to “maintain and restore my mental health”.


I am not depressed. I have no intention of being labeled with FDS. I am positive and excited about life. I enjoy the moment and I look forward to tomorrow. I find solace in my “support network” and I cherish the relationships and encouragement and laughter I find there. My life may not be a bowl of cherries but, every cloud has a silver lining.
____________________
Yapko, Micheal. “Secondhand Blues.” Psychology Today October 2009, 87-93
Kent, James. “The Perils of FDS: Fun Deficiency Syndrome” H+ Magazine October 7, 2009

Also posted at Lymenaide.com

Tuesday, October 20, 2009

Vote for UNDER OUR SKIN at IMDb

Okay Lymies, please, please vote for Under Our Skin at the Internet Movie Database. It needs at least 250 votes to be considered as one of the best documentaries of all time. You'll have to register to vote, but a small price to pay for all this film is doing for our cause. Who knows, maybe with enough votes it'll be nominated for an Oscar? If you haven't seen it--which you must--check out this list of nationwide screenings or watch it online or order your own DVD at the Under Our Skin site. Both Alix and I wrote reviews, Thank you, Thank you for this film and Under Our Skin Documentary A Hit.

Watch UNDER OUR SKIN Clip

Saturday, October 17, 2009

Remembering Jane

I began this piece last fall when Jane was still alive. Sadly, she lost her battle with lung cancer late last spring. She was a non-smoker. The week I returned home after being away for months of treatment, she entered the hospital for the last time. Our pact to heal together crumbled and I mourned a day that will never come.

Last fall, when Jane was beginning her second round of chemotherapy and radiation she wrote, "’I'm trying to soak in what this experience needs to teach me. I’m paying attention."

Powerful words. She was a special person.


Our family has faced it's share of medical challenges. All three of my children were born prematurely, the youngest, weighing just 2.5 pounds. The last six years brought countless medical visits for my daughter and I, several surgeries, the loss of my job due to illness, a quest for our restored health and finally diagnosis and treatment of Lyme disease for my daughters and I. We've been through a lot. What have I learned from our own experiences?

1) Never wear a watch. When you are waiting, the time goes by much faster without one.

2) Live in the moment. If your daughter wants to get the Christmas tree lights out in October and turn the dining room into her favorite soup and sandwich hang-out, join her. Just don't tell your friends when it starts to snow. : )

3) Find the gifts and blessings. Today, enjoying the beautiful autumn colors, listening to my daughters sing, reconnecting with friends. Blessings are all around. A phone call from a friend just to say hello. Dark organic chocolate. A smile and hug when your child runs to meet you from the bus. Family.

4) I've learned to trust my instincts more.

5) I've also learned you must be an advocate for yourself.

6) I try to stay level. As one doctor often reminds me, "You're running a marathon."

7 ) Accept help. My sister with breast cancer taught me the importance of this. Likewise, pay it forward.

8) If asked, "How are you doing?" I answer, "We're okay."

9) You can make the world better one smile at a time and always remember, your sense of humor is your best medicine.

10) Peacefully accept what you can accomplish in a day. Rest when you need to heal.

11) The best teachers are lifelong students.

I'm still learning, every day. Thank you, Jane! You were the best of both!

Tuesday, October 13, 2009

When Did You Get Lyme?

My daughters and I have Lyme disease. Like Alix, I was misdiagnosed with Lupus and finally was diagnosed with Lyme disease during the fall of 2008, my daughters in early 2009. It's been a tough road, but slowly we're making progress. I'm pleased to join the SpiroChicks team.

We've all been asked the question, "When did you get Lyme?"

I will never know when I was exposed or if I have been repeatedly infected, but I've certainly had ample opportunity. As a child, I spent five summers from the ages of 5 and 10, camping for entire summers while my father worked on his Master's at Central Michigan University's Biological Station on Beaver Island. Covered from head to toe with black fly, no-see-um and mosquito bites, it was a fabulous childhood and a pivotal influence on my adult life.

Our family spent the summer of 1976 camping while my parents cleared land and built their home in a wooded lot adjacent to a field frequented by deer. I loved to walk with my dog and ride my pony through those fields while growing up.

The run-in with ticks on a hike in the Porcupine Mountains?

During the fall of 1983 at Michigan Technological University, I spent a night in the woods with fellow classmates as we helped with an off-road rally, the Press on Regardless. I awoke days later, running a fever and covered from head to toe with tiny spots. The campus physician was puzzled by my illness. My son, born a year and a half later was 9 1/2 weeks premature.

Add a another red flag to the summer of 1989. I was taking field classes at the University of Michigan Biological Station. A chipmunk was a continual visitor to our dorm room. Did it carry a tick into our room?

During that summer, our class of 15 students and three instructors headed to Sugar Island for an overnight field trip. The group stayed in one cabin and some of us opted to sleep overnight under the stars, myself included. I still remember the beautiful stars and my giggles as my sleeping bag kept sliding toward the lake shore. When our class was preparing to return to the Station, I became violently ill with what at the time I thought were flu or food poisoning symptoms. However, I was the only one who became ill. I now know that a summer "flu", especially if no one else becomes ill, is a very red flag.

Within a few years, I could hardly walk due to arthritis in my right knee, I had daily sore throats, frequent respiratory and UTI infections and lost my voice at the slightest cold. A walk-in collision with a school bus mirror resulted in post-concussion syndrome, two weeks of missed work and months of short-term memory loss. I was bothered for many months, nearly a year, when an itchy sore on the back of neck in my hairline refused to heal. Students would remind me to eat protein when I would become weak and pale. Ten summers were spent at the University of Michigan Biological Station in northern Michigan.

Our current home backs up to a beautiful field. Deer frequent our backyard. I am a biologist and a nature photographer. Much of my life has been spent surrounded by nature. It is a part of who I am and what I love. My husband sides with the MTU theory. The truth is that we can only be sure of one thing. I've had it for a long time.

Monday, October 12, 2009

Ashley's Story


I grew up in Northern California. I’m not talking about San Francisco. I was four hours north of there in the mountains.
Like any kid who grew up in the woods; I was always outside, I hardly wore shoes, and I wasn’t afraid of getting dirty. Naturally I wasn’t afraid of bugs either.
I remember pulling a tick out from behind my ear. I can still see its little legs kicking in protest. With a look of disgust, I threw him on the ground. “Yuck”, was about the only thought I had about the experience. I was maybe 10. I don’t think I got Lyme from that one, he was too big.
I also remember getting spider bites. I never saw the spiders but I would occasionally wake up with a big, round, red ring of a rash around what appeared to be an unaffected patch of skin. Sound familiar? Yeah, well needless to say I am no longer so sure about my self diagnosis of spider bite.
It is hard to say when I was actually infected with Lyme. I didn’t really start suffering from an symptoms until I was 21.
In 1998 it started slowly with my stomach. Honestly it was pretty miserable at times but I just ignored it.
In 2000 I moved with my now husband to New Zealand. When we got off the plane I was in bad shape. It felt like someone had stuck a big wooden spoon into me and proceeded to stir my inards.
“Is this what jet lag was”, I wondered?
It quickly got worse. Besides the unbearable pain in my stomach I started having major breathing problems. I just felt like I wasn’t getting enough air. I also had trouble swallowing. The doctor gave me and inhaler for asthma. Ah, it didn’t help.
Life continued on with me in a constant state of panic. What the hell was wrong with me? My boyfriend’s advice- “Harden up Ash.” How very Australian of him.
On a trip to Germany in 2001 my boyfriend declared that the whole city of Munchen stank. Everywhere we went there was a foul smell. I was too embarrassed to tell him it wasn’t the city. Thankful though, that he didn’t realize it was me.
In 2002 we departed another plane, back in the USA. I was bad. Everything I ate or drank seemed to have an adverse effect on me. Mentally I was struggling too. At this point I thought the doctors were right. I was nuts, totally off my rocker. Lock me up and throw away the key!
My family blamed my fiance. My fiance blamed American food. I was pretty sure I was going to die soon. The latest doctor gave me drugs for IBS and acid reflux. Whatever.
I went to the doctors 13 times between January and March of 2003. Lots of drugs and no real answers.
At our engagement party in April, the guests must have thought I was on illegal drugs. I couldn’t even answer simple questions. I remember my mom encouraging me, as if I were a five-year-old, to answer for myself.
Another plane back to OZ and NZ. I was sick of it all now, and determined to figure this out for myself.
My self diagnosis -Candida.
I found a naturopath to help. She confirmed the candida and tested for parasites. I had a lot. She also did a food allergy test.
I took all this information and put myself on a diet protocol. No gluten, no dairy, no sugar, no alcohol, and no meat other than seafood. My wonderful husband conformed as well.
At this point I had added depression and fibromyalgia type pains in my legs to my symptoms. Enough was enough. My new protocol also included exercise. I started with walking 20 minutes a day.
Six months later I was still on the diet, running three miles four times a week and actually feeling healthy.
I felt pretty good in 2004 and 2005. I had ups and downs for sure but they were manageable.
In 2006 we went to El Salvador for two months. Maybe I got a new parasites or maybe it was that my diet protocol had long since flown out the window. Maybe it was the plane rides or too much time living at over 8,000 feet and working at closer to 10,000 feet. Maybe I got re-infected, I still wasn’t afraid of sleeping in the dirt. Who knows, but my health started to slide.
I decided to just accept my fate. I told my doctor that I was cursed with a sensitive digestive system and I was learning to live with it.
In the winter of 2008 the depression returned with a vengeance. I couldn’t cope. I was struggling to make it through everyday. I’m really good at putting up a front though. No one had any idea what I was going through. I wasn’t even sure what my problem was.
I nearly lost my husband because with no where else to find blame, I layed the finger on him. For some reason he stubbornly stood by me. I was lost.
That summer I gave in. Maybe I was nuts like the doctors had been saying for the past 10 years. I went to see a shrink.
Well, she didn’t think I was crazy. She thought I was sick. How’s that for a Catch-22!
In the fall I reluctantly went to see another doctor. It was getting too serious to ignore.
She tested me for everything under the sun. I was surprised there was any blood left in me after all that!
There appeared to be a handful of minor things wrong with me including, Lyme disease.
I didn’t like her. The medications and supplements she put me on made me feel like I was going to die and I kept breaking out in hives. Nothing was explained to me.
I stopped seeing her after two months.
It was four months later when I went to se a chiropractor that I learned about Lyme disease.
He lent me his copy of Under Our Skin. My husband and I watched it in horror. Was that what we had to look forward to? Did I really have Lyme or was this just the latest in the long list of  the so called “diagnoses” I had received?
The LLMD told us about Lyme. He asked questions about my past and my symptoms. Magically all the broken pieces of my life seemed to fit back together.
I had Lyme alright, and co-infections and viruses.
Would I change it if I could?
No. Like so many others I have discovered so much about myself that I would have otherwise never known. I have become a better person because of this disease.
Do I want to be healthy? Yes.
Emotionally I am in a much better place now then I have been in years. Physically I struggle but, there is a light at the end of the tunnel.
Also posted on lymenaide.com

Friday, October 9, 2009

Vote for Jen -Lyme Disease Awarness

Jennifer Wilson is in the running for the Nature Made SAM-e “Good Mood Gig” Talent Search!

What is the “Good Mood Gig”?

It is a blogging job. Jen will be required to post five articles a week for six months. This job is a great chance for her to show off her good mood by writing a daily blog post about the things that make her happy.

What does this have to do with Lyme?

Jen has Lyme. She wants to use this position to help spread the word about Lyme disease. She also wants to inspire others whether they have Lyme or not to be positive!

Hey!!! I want to represent the Lyme Community and show the millions of users of Sam-E how a chronic lyme patient lives daily life but I have to get a lot of votes!!! I need your help!!! 

My name is Jen Wilson and I was diagnosed with Lyme Disease when I was 11 years old. I am 23 now and relapsed about a year and a half ago. But I have been struggling with Lyme my whole life as I was taken out of high school for 2 years and college was extremely difficult and I had to withdrawal.

I was the classic Lyme patient going to doctor to doctor being diagnosed with chronic fatigue and eventually MS. I finally found an LLMD about a year ago and have been on antibiotics ever since. I also have several co-infections as most chronic Lyme patients do. In February I lost my hearing in my right ear and no one knows if it will ever come back.

I have an opportunity to represent the Lyme community in a blog on the Natures Made website. They are looking for a daily blogger and I would love to blog everyday about living with Lyme. I want the world to see our daily struggles and have them try to understand what we all have to go through. The blog is also about optimism so I really think that I’ll be able to change many peoples opinions of us. Please go to the website all you do is have to click Vote For Me. You can vote once a day and we only have until October 30th to get as many votes as possible. Thank you!  -Jen


VOTE FOR JEN

Thursday, October 1, 2009

The Risk I Will Not Take


I wish that my children were already born. I know that they would most likely have Lyme disease. I know that it would be hard and I would feel guilty that I had given them my disease. But, at least they would be, and now, they most likely never will.
This is one of the most difficult things for me to deal with when it comes to having Lyme. I am 32 years old. I have been with my husband for 10 years. I have always imagined that we would have a family of our own. 
If our children were already here, I would be innocent of their health. They would have been born to a mother who had no idea that she had Lyme disease, no idea that she might be passing it on to her children. But, I am not that innocent mother. I know. I know the risk to my unborn children and I know the realities of Lyme disease. 
I hold on to the hope that their will be miraculous discoveries in the field of tick-borne illnesses in the next few years. That they will discover a way to ensure my baby’s health.


I may have made my decision, but I am not yet ready to face it as reality. 


Adapted from, follow up to Stolen Dreams originally posted on Lymenaide
(The photo is of my niece who I am lucky enough to get to live with for the first year of her life!)

Monday, September 28, 2009

Monkey Girl's Story...part 3

I was newly labeled...a Lyme Disease victim.

There is always a certain sense of relief that happens when your doctor finally gives you an answer.

Of course, I was still skeptical.
Only a few months before I'd been labeled with fibromyalgia and a few months before that labeled with autoimmune urticaria (hives).

My Guardian Angel (my father) must have been working hard that day.
My ND just happened to have gone to medical school with someone who was an up and coming LLMD and had been treating Lyme patients with her partner (an MD) for the last couple of years.

My ND made a personal call to her, and viola, I had an appointment with my LLMD in two weeks.

It really wasn't until I also tested positive for Bartonella and Babesia duncan i, that I finally let my diagnosis settle in my bones.

For those two weeks, I did nothing but research Lyme on the internet, sleep restlessly, and freak out about my new diagnosis. Even though I have a close friend who also suffers from Lyme Disease, and had seen her struggle with treatment for the last 5 years, it was still difficult to wrap my head around my looming future.

I knew enough about Lyme to know my treatment was going to be a long up-hill battle that could potentially go on indefinitely. I knew the future wasn't all lollipops and rainbows.

My first appointment with my LLMD proved to be exhausting and financially draining (haha). I got referrals to a pain specialist, an optometrist, and a psychiatrist.
My pain level was at a constant 6.5, my eyes were giving me so much trouble I had to close and rest them at least 15 minutes every hour or two, and my brain fog and memory troubles were effecting my ability to finish my classes and read more than a sentence or two at a time.

I already was in pure hell...or so I thought.

My LLMD first order of business was to put me on 3 months of Levaquin for the Bartonella. Yippee!

It's been 18 months since my diagnosis.
I've had severe highs and lows.
Good days and days I don't move from my bed.
Allergic reactions that have put me to the edge of my sanity.


...and still I am fighting.


And for all those other Lyme sufferers out there...

"But you look so good."

It's no wonder we suffer from Lyme rage.


peace and health,

Monkey Girl

Friday, September 25, 2009

Hush Little Lymie

Every night is the same. I go to bed with my husband around 10:30 PM. I have all the intention in the world of falling fast asleep and slumbering peacefully until morning. Oh, that would be a dream come true, literally.

Instead the experience goes more like this. I crawl into bed and try desperately to ignore how cold my hands and feet are. I flop around like a fish trying to find a comfortable position. All the thoughts from my day are replaying in my head and I’m making plans for tomorrow. I silently, out of jealousy, curse my husband who is sound asleep. Oh great, now I have to pee. Once I am back in bed the whole process starts all over again.

At this point I generally give up. Who am I kidding? I don’t even feel tired, in fact I am more awake now than I was all afternoon!

So much for that dream of pleasant slumber. I hit the internet. This is something my doctor has specifically told me not to do. "No computer at least a hour before bed." I lied to him and said I wasn’t doing it anymore. I can’t help myself, maybe I need a 12 step program. tonight however, he may forgive me. Tonight I found some answers to my problem. OK, problems.

#1 Liver toxicity.
“If you tend to awaken at 2:00 AM or not fall asleep until that time, this is a sign your insomnia is related to the liver”
That is me! 100%, I don’t get tired until 2:00 AM.


#2 Adrenal insufficiencies, I just got tested for this one, the test aren’t in yet.
“When the adrenal glands cannot synthesize the proper amount of hormones due to illness and stress, insomnia results.”

#3 Thyroid imbalance. I just started taking something for my thyroid imbalance.
Thank you Connie Strasheim and Planet Thrive!

#4 I really should have seen this one coming.
“Be sure that you don’t do any stimulating activity after taking the melatonin, because if you do something (e.g., read or watch TV), then it will backfire and it will keep you up for hours.”Ken Singleton
Whoops, computer got me again. Guess I need to listen and not lie to my doctor.


So what am I going to do to thwart my insomnia? Listen to my doctor, no more computer before bed. Try to stick to a set sleep/wake cycle and take a warm shower before bed so that I’m not so cold.

Other helpful advice from the Smart Doc and the internet included; coffee enemas, green clay, caster oil packs, epsom salt baths, and chlorella for the liver. A protein snack like yoghurt or warm milk a 1/2 hour before bed is supposed to help the adrenal issues. Oh, and did I mention no more computer before bed?

Monday, September 21, 2009

Monkey Girl's Story....part 2

Christmas of 2007/08 was horrible.

My Infectious Disease Specialist ceremoniously dumped me as her patient and my symptoms were coming to a head.

I was breaking out in hives almost every day.
And I was resigned to the fact that I may never know what was going on with my body. I figured either I had contracted some horrible illness and/or my body mistakenly thought it was under attack so it was attacking my body (autoimmune). Either way I was fucked.

I went to a HMO hospital in Seattle and saw their rheumatoid specialist for testing.

We tested for Lupus, MS, rheumatoid arthritis, and a couple of other autoimmune diseases.

And although my blood work showed super high inflammation rates, I tested negative for everything. At this point she diagnosed me with fibromyalgia and recommended I start taking an antidepressant.

I burst into tears at the doctors office. Another non-diagnosis. Another doctor telling me that an antidepressant was the 'cure-all' for my problems.

I left disgusted and vowed never to step foot in that particular hospital/clinic again.

By this time, I felt like the world's oldest guinea pig. I'd had two thyroid surgeries in 6 months, because my thyroid had stopped working and started growing nodules at a rapid rate. I had no energy. I was breaking out in painful hives at least 3 times a week. I was on heavy doses of antihistamines. My joints and muscles were in terrible pain. My bouts of insomnia were the worst they'd ever been, and if I wasn't depressed at the beginning of this ordeal...I certainly was headed in that direction.

No one was interested in finding out why I was so sick.

My only support was my dear dear husband.
Who held my head and hand while I was on the toilet. Wiped the sweat from my forehead. Let me sleep 18 out of 24 hours a day...when I needed it. And who had started cooking and cleaning because I couldn't even get out of bed.

Then one day in February 2008, my ND who monitors my thyroid levels suggested we test for Lyme Disease. I was skeptical, I had a friend in California w/Lyme and I just didn't think that was my problem. She convinced me we had nothing to lose...and with angels looking out for me, she just happened to know that we should do the blood work through a lab in California (Igenex).

Not giving it much thought, we went about our daily routine and struggles.

And 3 weeks later she called. She asked me to sit down, which is never a good sign, and told me I'd tested positive for Lyme Disease. CDC positive no less.

You could have knocked me over with a feather....


...to be continued

Friday, September 18, 2009

Monkey Girl's Story...part 1

I don't know exactly when or how I got Lyme Disease.

I certainly never remember getting the 'bulls-eye rash'.

But I do know I've been sick for over ten years. I mean really sick. And that until March of 2008, no doctor, no specialist, no ER, no hospital could tell me what was wrong.

"You're a mystery," the doctors would say.

I can't tell you how frustrating it was to hear those words.
But I heard them... over and over.

At first, it started with digestion problems.
I couldn't be far from a bathroom. Preferably my own.
Many many times, my husband would speed home, breaking every speed limit, just to get me to our bathroom.

After awhile I had to stop working.
I didn't know if and when I'd have what we called, 'an attack' where I'd spend hours in the bathroom. Afterward, I was so tired, I'd end up sleeping the rest of the day.

My doctor sent me for tests.
Sigmoidoscopy, colonoscopy, blood work, tissue biopsies, etc...

Nothing. After months of tests, the best they could come up with was...IBS.

That diagnosis was the first in a long list of what I refer to as 'non-diagnoses'.
Meaning...the doctors didn't know what was wrong...but they knew what it wasn't.

For a few years I struggled with these symptoms the best that I could.
On average, I went to the emergency room 2-3 times a year, usually for uncontrolled abdominal pain.
The ER doctors knew something was wrong. My blood work, by then, was screwy. My white blood cell count often showed a raging infection, but what kind they didn't know.

I had serious bouts of fatigue. All over body fatigue that could last for hours or days. Getting out of bed, showering and dressing would completely wipe me out.

I modified my life.
I stopped working completely.
I started acupuncture (which helped with my pain).
I got plenty of rest.
I started taking supplements & Chinese herbs from my acupuncturist and my chiropractor.

And slowly, I started to feel better.

What I didn't know was this was the first of a few 'mini-remissions' I would have after taking some antibiotics prescribed from my doctor (generally for an infection).

Every year I acquired new symptoms. I started becoming allergic to medications, skin cleansers, lotions, perfumes, and earrings (weird, right?). Really allergic. Anaphylactic reactions. I started carrying an EPI-pen 24 hours a day.

After a particularly scary ER trip (via ambulance) I was referred to an Infectious Disease Specialist. The doctor at the ER was worried (noticeably) and wanted us to immediately go in for testing. It was the first time (since I was 20) that a doctor used the "C" word (cancer).

Now we were scared.

Here I thought, we're seeing an Infectious Disease Specialist, right? Everything would be ok, and she'd find out what was going on. FINALLY.

Nope. Not even close.

For the second time in my life, my doctor was more interested in writing a paper about my 'weird' illness than actually healing me. I was going to 'put her on the map' as they say. So all in the 'effort' of finding my illness, she sent me for...

more blood/urine work
a bone marrow biopsy
a spinal tap
countless trials with new meds

Only to dump me as a patient when I didn't have the disease she wanted me too.


And then the shit hit the fan.


.....to be continued.

Thursday, September 17, 2009

The people who are there for you

This is written in honor of National Invisible Chronic Illness Awareness Week and has been cross-posted to gratitude365.

One of the more heartbreaking aspects of being sick is the change--or the loss of--relationships. I went through this the first time when I became a mom. My relationships with friends without kids changed. I didn’t have as much time to invest in them and they couldn’t always relate to my life. Getting together required advance notice, a negotiation with my husband, or hiring a sitter, so it just started happening less and less.

Then about a year and half ago, after my second son was born, all wheels fell off. I went on a roller coaster of infections, symptoms, and doctors and was finally diagnosed with Chronic Lyme Disease. I started to go through the friendship change again. Not only was I living with a chronic illness, but was also staying home caring for a baby and a preschooler. Getting together with friends was even more complicated. Not just because of logistics, but mostly because I was--and still am--sick and tired. And if I get a break, I want to crawl in bed, go get a massage, or swim a few laps.

So, I did not invest in some relationships like I would have liked over the past year. I’ve just been too overwhelmed with my own life. But frankly, I’m surprised and disappointed with people who I thought would “be there” but aren’t. They might have been at first, but I think over time, there’s an impression--or expectation, maybe--that I should be better by now. Or maybe it’s because I don’t look sick they don’t realize how sick I really am. Or maybe they’re buried in their own overwhelming life and I don’t know it because, like me, they’re pulling off a Ginger Rogers act.

But sometimes I find connection where I least expect it. For example, an old colleague on Facebook, whom I haven’t seen in 10 years, sent me a very kind note after reading about my struggle with Lyme. He shared that his wife has MS. He wrote, “Her symptoms are invisible to the rest of us who, at times, are somewhat insensitive to her private suffering.” I teared up when I read that. He is one of the few who get it.

Lyme has given me my new BFF, Alix. We were acquaintances and Facebook friends, when I posted something about looking for a far infrared sauna. She eerily commented, “Do we have the same thing?” Alix has since then become a huge blessing in my life. She’s the only person in the world I don’t have to explain anything to. We go to each other’s doctor visits and discuss medications, supplements, diet, and body functions ad nauseam. And in the midst of her own suffering, she finds a way to comfort and humor me in a way no one else can.

Of course there’s my four sisters and a couple girlfriends that I’ve known forever who even though they don’t live here, will say they wish they did so they could bring over a meal, take the boys, or go out for a much needed drink (even if it is only green tea). And those relationships haven’t changed, if anything, they grow stronger by the day.

As hard as this has been on my husband, and we’ve had some rough moments (to put it mildly), I’m constantly amazed by his loyalty and capacity to care for me. I’m reminded of our wedding vows: “Loving what I know of you and trusting what I don’t know, I choose to spend my life with you.” Who would have thought we’d be faced with “in sickness” only six years into our life-long commitment. But, as much as this sucks, without Lyme, I wouldn’t have realized how much that gamble has paid off. I can’t imagine facing the future with anyone else.

Sometimes I get really down about not being a very fun mom. I’m fatigued. I’m in constant pain. I’m irritable. I have panic attacks. I let the sitter take them to the park. I let Dad do the roughhousing. And the soccer, baseball, golf, hockey, croquet, or dirt digging in the front yard falls to the neighbor girl to manage (what a blessing she is). I’ve had many teary moments wishing I could go running and giggling with abandon after these active boys. But on the flip side of all this, I think--and hope--that perhaps I’m raising empathetic boys. I’ll never forget the first time Ry asked me, “You fragile, mommy?” And then just this week, while his dad was out of town on business, he says to me, “I’m going to take good care of you Mommy, but I can’t cook.”

And then there’s my own father. We’ve had our differences over the years. And there’s pain there. But my having Lyme disease for whatever reason, has made him come to terms with what he sees as his shortcomings as a father. He has apologized to me, which means more than I can ever write into words. I feel like he’s “seeing me” more than he ever has, and he, along with my mom, is becoming a reliable source of empathy.

My former colleague put it this way referring to his wife's MS: “This new, permanent member of our lives has taught us many things about living. I wish the positive lessons learned could have come through different means, but they have come and we are grateful.” And to that I say: ditto. And I can only add that may I never take these relationships for granted again. While I am not grateful for being chronically ill, I am grateful for the deepening of these bonds, the love I’ve experienced, and new eyes with which to see it all.

Friday, September 11, 2009

When to Hire a Mold Expert

The following is a guest post from Susanne of Adventures of a Soap Maker. Becuase if you're a Lymie like me, you likely have mold sensitivities. 

When should you hire a mold expert? Don't bother. Recently we hired a mold expert to do indoor air samples as we were concerned about a mold problem in our home. The tests came back and according to our "expert" we didn't have anything in our home that needed treatment. Yes the air samples had mold in them. But according to the experts the mold we had in our sample wasn't statistically significant enough to point to an indoor source. He believed that what was in the sample had been tracked in by people and dogs. My symptoms told me otherwise. The expert looked at me like I was crazy when I told him I was sure we had mold.

At a loss for what to do next and a word for the experts that we didn't have a treatable mold problem, we installed an infinity air purifier to our HVAC system. The air purifier kills mold, dander, bacteria,viruses etc. Within 5 days I was feeling much better and actually in certain parts of the house had no symptoms. However, certain rooms would flare up my symptoms. So we bought an $8.00 mold kit from Lowe's. Big surprise--the test was positive for mold! The picture above is our mold petri dish after 5 days.

So the hunt for a mold source was on. We removed carpet in our home office. We had already removed my son's carpet before the air samples were done, but when we went back in to remove the carpet in his closet we discovered mold underneath the carpet and up his wall and in his ceiling. So much for the expert advice! My recommedations for anyone out there with mold suspicions: "find it yourself!" In our case the expert did not lend a bit of help to the situation, in fact he temporarily through us off the trail of what we needed to find. I was getting sicker by the day. I am so thankful for my husband who hung in there with me on the hunt.

Moral of the story: be your own mold detective. If you find yourself facing a mold situation, check out the
American Environmental Health Foundation and do your own research.

Monday, August 31, 2009

Glad I didn't go on Humira

This just in: The FDA announced that there is an increased risk of lymphoma and other cancers associated with taking TNF Blockers (Remicade, Enbrel, Humira, Cimzia, and Simponi). Just as my accupuncturist suspected. So glad she talked me out of the Humira back when we thought I had Psoriatic Arthritis.

Tuesday, August 25, 2009

Limited

My dad had a heart-attack a little over a month ago--his first. This was preceded by an emergency appendectomy with complications a few months earlier. It's been a hard adjustment for him to accept health challenges, live on four or five medications, and think about changing his diet at age 73 years. When I got home from our 12-day road trip, which included a visit to him in the hospital, I wrote the following letter.

Dear Dad,

For me, I feel like my cross to bear is that I've always felt limited to some capacity. Either by asthma or severe allergies as a child; or debilitating headaches, chronic body pain, emotional fragility as an adolescent and young adult; and now with all the various complex symptoms of Lyme disease. 

And to say the least, it's never been fun. It wasn't fun when I was a kid and it would take me a day to recover from riding horse [I would break out in hives, would sneeze uncontrollably, and suffer an asthma attack], something I loved more than anything else. Or when I didn't have the stamina of other kids in sports. But being a kid, and not knowing what it was like to be normal, I accepted it.

Last fall, when I started having psoriasis, chest pain, nerve pain, joint pain, panic-seizure episodes, migraines, blurred vision, shortness of breath, my eyes so dry I wanted to claw them out, my bones hurting in the inside, my shoulders tingling like I've been hooked up to an eclectic current, and would wake up in the middle of the night shaking and with the chills, as if I was in shock, I had a very hard time accepting it. 

It was all so confusing and scary I was convinced I was dying. And if I wasn't dying, I wanted to. I didn't want to live like that nor did I want my kids to be raised by a mother so limited and seemingly crazy. And, I felt like a major burden on my husband.

But somebody told me to fantasize about a happy, healthy future--being active with my boys. And that's what I did. I would imagine the future and all my dreams yet to be fulfilled. In fact, I had one especially, touching "vision" where I was dancing with Ry at a formal event, maybe his wedding. And then another where JB, a grown man, was carrying me.
[FYI, Ry is 4 years old and JB is 1.5] 

Those dreams/fantasies kept me going. And a lot of prayer. And so, here I am, nine months later, with the help of a good doctor and supportive family,  feeling so much better, improving everyday--physically, emotionally, and spiritually. And, I have a different life perspective because of it all. A better one.

You can take what you want out of that and how it applies to your life. I can imagine that the last three months have been really rough. It's hard to come to terms with sickness, and being dependant on medication and other people. I know that. It's a hard place to be. Especially after the adventuresome life that you've lead. 

I'm sure it will be difficult for you to take it easy for awhile. And in the days when you want to give up, I hope you think about how much we all love you and all the adventures you have yet to go on and all the memories you have yet to make with mom, your children, your grandchildren, and your great grandchildren.

I love you, 

Kim


Tuesday, June 30, 2009

Zoe Lofgren Cosponsors H.R. 1179

Got this email today:

Dear Ms. [Kim]

Thank you for contacting me about House Resolution 1179, the Lyme and Tick-Borne Diseases Bill. I appreciate that you took the time to share your thoughts with me.

I am sorry to hear about the physical ailments you are experiencing due to Lyme disease. Please know I will keep you and your family in my thoughts. In part based on your advocacy, I have decided to cosponsor H.R. 1179. The bill has been referred to the House Committee on Energy and Commerce. I will be sure to keep your comments in mind should H.R. 1179 come to the House floor for a vote.

Again, thanks for being in touch. If I may ever be of assistance to you or your family, please do not hesitate to contact me.

Sincerely,

Zoe Lofgren
Member of Congress



Thank you, thank you Ms. Lofgren!

Thursday, April 2, 2009

Blame it on the Lyme: psychological symptoms of infection

Pamela Weintraub has done it again. She's got proof. A lot of it. Over on her Psychology Today blog, she's got a BIG list of articles that can link infection with personality changes. There's so many this Lyme-brain couldn't count them (believe me, I tried).

She quotes psychiatrist Robert Bransfield: "In working with a number of patients with Lyme/tick-borne diseases it is apparent to many clinicians these conditions can cause reduced frustration tolerance, irritability, depression, cognitive impairments and mood swings, but more significantly, in a few patients, suicidal and aggressive tendencies."

You mean it's not just my personality?

Monday, March 30, 2009

It just gets scarier

"Two weeks ago, I was so ill with Lyme, that I thought I was going to die. I was getting neurological symptoms, my right leg was caving in, and my mind would not work. I called the following hospitals; Stanford Hospital, Mayo Clinic, University of California-San Francisco, not a one of these top institutions would take me as a Lyme patient. I start to get an inkling what is must have been like at the beginning of the AIDS epidemic."

--Michealene Cristini Risley, in today's article from The Huffington Post.

Wednesday, March 25, 2009

Ask your Congressman to co-sign letter for Lyme Department of Defense Money

This just in:

CALL TO ACTION 2009 #3
from Pat Smith, President, Lyme Disease Association

A Dear Colleague letter has gone out from Congressmen Christopher Smith (NJ) and Bart Stupak (MI) to their fellow Members of the House of Representatives asking them to co-sign the letter below. The deadline for Congressmen to sign on is March 31, 2009.

ACTION FOR YOU TO TAKE:
1.Click here to determine who your own US House Member is (you only have one)
2. Call your own Congressman (or you can email him/her)
3. Ask him/her to sign onto this Department of Defense appropriations letter.

WHAT TO SAY TO YOUR CONGRESSMAN:
Sample phone blurb asking your Congressman to sign appropriations letter;

"I am calling to urge the Congressman/woman to co-sign the Department of Defense Appropriations letter from Congressmen Christopher Smith and Bart Stupak. The letter asks for $10 million for Lyme and other tick-borne diseases research. These monies can help the military and patients everywhere. Your office has already received a “Dear Colleague” about signing on to the letter. The Congressman can contact either Congressman Smith’s or Bart Stupak’s office. Please make sure he meets the March 31 deadline. Thank you. (Give your name, address, phone number)

PLEASE DO NOT:
Do not Contact Congressman Smith or Bart Stupak’s office yourself. Only your Congressman should contact either one of them to co-sign the letter.

For other information on Lyme disease legislation and funding issues, go to LDA’s new Legislation webpage.

Letter to the Department of Defense from Congressmen Christopher Smith and Bart Stupak

The Honorable John P. Murtha, Chairman
The Honorable C.W. Bill Young, Ranking Member
Appropriations Subcommittee on Defense
Room H-149 The Capitol
1016 Longworth House Office Building
Washington, DC 20515

Dear Chairman Murtha and Ranking Member Young:

We are requesting that you provide $10 million in the Congressionally Directed Medical Research Program (CDMRP) for research on tick-borne diseases, with particular emphasis on Lyme disease.

Lyme and other tick-borne diseases (TBDs) are a significant threat to military forces, including not only at U.S. bases and training facilities, but at many oversees locations. Lyme disease has been found in at least 65 countries worldwide. Disease causing ticks are endemic on many domestic military bases and are increasing their range across the U.S. In one sample of black legged ticks collected at Camp Lejeune last year, 35% were carriers of the spirochete, Borrelia burgdorferi, that causes Lyme disease.

Funding is needed in the CDMRP for research on TBD’s, including to develop more sensitive and accurate diagnostic tests for Lyme and to increase understanding of the full range of Lyme disease processes and the physiology of Borrelia burgdorferi, including the mechanisms of persistent infection.

Many TBDs are growing problems in the military, with the highest reporting of suspected cases being Lyme, Rocky Mountain spotted fever, ehrlichiosis, and babesiosis. Lyme is the most frequently suspected TBD in the military and is the most prevalent vector-borne disease in the US today, accounting for 90 percent of all vector-borne infections in the U.S. About 270,000 Americans developed Lyme disease in 2007. According to the Centers for Disease Control & Prevention (CDC), the 27,444 new cases reported in 2007 represent only 10% of the actual cases meeting its stringent surveillance criteria.

If not diagnosed and treated early, Lyme disease can lead to disseminated and persistent illness and can affect every system in the body, including the central nervous system. At a blood products advisory committee meeting on Babesia in the blood supply last fall, Dr. Jesse Goodman, M.D., an infectious disease physician and Director of FDA’s Center for Biologics Evaluation and Research, made the observation, “I will say I just finished a month of clinical attending at the Naval hospital in the summer, and I was actually fairly shocked by the number of cases of disseminated Lyme disease that we are seeing. So I think that the notion that we have control over tick-borne disease … we don’t really have a good hand on how many cases of primary infection there are.”

The US Army Center for Health Promotion and Preventive Medicine (USACHPPM), states that “later symptoms of LD can begin to appear shortly after the initial symptoms or not until weeks to months later. These symptoms occur as spirochetes begin to spread via the blood stream and lymph into tissues in other parts of the body. These symptoms may include complications of the joints, the nervous system, and the heart.”

USACHPPM further states that “cases presenting with only disseminated stage complications can sometimes be very difficult to diagnose.” The high rate of false negative diagnostic tests and the misdiagnosis of Lyme (the great imitator) as another disability is of extreme concern because lack of early treatment allows the disease to become disseminated and much harder to treat. According to USACHPPM, “In advanced disease, treatment failures may occur and retreatment may be necessary.”

Thank you for your consideration of this extremely important request that will be a direct and significant benefit to the military as well as to large numbers of sick individuals who may be suffering from one or more TBD’s so that they can be accurately diagnosed and appropriately treated, and to treating physicians and health departments across the country.

Monday, March 23, 2009

Cure Unknown, Inside the Lyme Epidemic: Required reading for EVERYONE

I just finished Pamela Weintraub’s Cure Unknown, required reading for anyone with Lyme disease. But really, EVERYONE should read this. To protect yourself, your family, and your friends, not just from this rising epidemic, but also from our broken medical system where misdiagnosis of Lyme is the norm—not the exception—and the powers that be seem to have their own interests at heart.

Weintraub, as a science journalist, herself and her family afflicted with Lyme, opens your eyes to the limitations of mainstream doctors and uncovers disturbing efforts by the CDC and IDSA to under-treat and even deny the existence of a debilitating disease affecting millions.

Referring to the authors of the IDSA guidelines on the treatment of Lyme, Weintraub writes: “They consulted for big pharma and owned Lyme related patents; they received fees as expert witnesses in medical malpractice, civil, and criminal cases related to Lyme disease; and they were paid by insurance companies to field—and help reject—Lyme related claims. Of the fourteen authors, nine received money from vaccine manufacturers and four were funded to create test kits, products that would be more likely to reap profit if the definition of Lyme disease remained essentially unchanged.”

The stories in this book will make you angry—babies, children, teenagers, moms, dads, doctors themselves—suffering from chronic, debilitating Lyme, being told that it’s all in their head, or to be misdiagnosed with developmental disabilities, chronic fatigue, fibromyalgia, multiple sclerosis, arthritis, bipolar disorder, Parkinson’s or even ALS.

Sadly, I concur with someone who said to me, “this book is more disturbing than hopeful.” But, information is power. And now I know what I’m reckoning with. Not just these persistent spirochetes or range of co-infections, but also the misguided mainstream doctors and the powerful IDSA. Thanks to Pamela Weintraub and her generosity of spirit and her courageous book, I have the information I need to reject the status quo, find the right treatment, and work towards getting better.

Sunday, March 22, 2009

Upcoming Screenings of Under Our Skin

Golden Gate Film Festival
Sunday, March 29, 4 – 6pm
417 Alvarado Street Monterey, CA 93940
Andy Abrahams Wilson, filmmaker, will be there in person.

Sonoma Film Festival
Friday, April 3, 12pm – 2pm
Saturday, April 4, 6pm – 8pm
574 1st Street East Sonoma, CA 95476

Not in Northern California? Check out this list of nationwide screenings.

Thursday, March 19, 2009

Adventures in Far Infrared Saunas Part 1

So my Lyme sista (who really does exist and when our photo goes up, you'll all realize she's not a figment of my "lymagination") and I connected through a status update I made on facebook about how I was looking at far infared saunas. I think we both knew it was inevitable minutes after her eerie comment, "Do we have the same thing?" that we would blog together about this trying time in our lives.

For the last couple days, sista has been sending me instant updates of her far infrared search--everything from Dr. Mercola's DIY out of cardboard box to the "bag lady" (AKA the Portable Infrared Hothouse) to mineral lamps. Meanwhile, I've been having a hard time getting over my obsession with the only outdoor unit on the market. The price seems reasonable (er, cheap). But then I stumbled upon some site telling me not to buy a far infrared sauna from China.

I just want a good sweat in a box. To be pain free. Lyme free. Spirochete free. Maybe a good old fashioned sweat lodge would do the trick?

Tuesday, March 17, 2009

IDSA Stealth Campaign to Kill the Lyme Bill

This just in:

CALL TO ACTION 2009
from Pat Smith, President, Lyme Disease Association

While you are struggling to get diagnosed, treated, reimbursed for your medications and trying to protect your doctors right to clinically diagnose and treat, a medical specialty society is quietly working behind the scenes to eliminate the opportunity for research into your disease—research which could hold the key to your health.

Last week, LDA uncovered a behind the scenes maneuver initiated by the Infectious Diseases Society of America, IDSA− a letter, sent to doctors in specific states, asking them to oppose the Lyme bill, which they describe as one “that would establish a federal advisory panel on Lyme and other tick-borne diseases heavily weighted with patient advocate group representation and with a special seat reserved for a chronic Lyme disease physician.”

In the letter to doctors, the IDSA president said, “the bill's overt support for chronic Lyme disease and other views promoted by Lyme disease activists is troubling. We are concerned about the federal government backing ‘chronic’ Lyme disease when Lyme disease has never been shown to be a chronic infection, and when those patients diagnosed with this dubious condition are frequently treated with long-term antibiotic therapy, exposing them to significant risks for questionable benefits. Our mission is to promote public health and good patient care, and we are concerned that this bill would do neither.”

To defeat the bill and the research monies, IDSA asked doctors to sign onto a letter to Congress that states, in part, “we are alarmed at the references to ‘chronic’ Lyme disease.” It stated some study patients with a “previous diagnosis of chronic Lyme disease did not have Lyme disease at all, but actually had something else, such as rheumatoid arthritis or other autoimmune disorders, fibromyalgia, or depression—conditions that need treatment with something other than antibiotics.” IDSA “urge[s]” our Congressman to, “oppose it and to not cosponsor the bill.”

IDSA is trying to silence treating physician and patient voices in DC. It does not want research which can help you be accurately diagnosed and treated, but continues to promote the “not Lyme” diagnosis, which means no antibiotic treatment for you and your families. We NEED you to CALL your federal representatives this week to combat this assault. We MUST ensure our representatives are not swayed by the IDSA’s propaganda!

TAKE ACTION
Click here to determine who your own US House Member is and who both your Senators are.
• Please call all three of your representatives today!

Sample phone blurb asking House Members for bill support: "I am calling to urge the Congressman/woman to co-sponsor HR 1179, the Lyme & Tick-Borne Diseases Bill. Lyme disease has become an epidemic spreading across the county, we are sick, the tests aren’t accurate, and we need a cure! Patients, and those who treat them, also need a voice in this process. Only you have the power to make that happen. Please sign on to co-sponsor HR 1179 today. Thank you. " (Give your name, address, phone number)

Sample phone blurb asking Senate Members for bill support: "I am calling to urge the Senator to co-sponsor the Lyme & Tick-Borne Diseases Bill when it is introduced by Senator Dodd. Lyme disease has become an epidemic spreading across the county, we are sick, the tests aren’t accurate, and we need a cure! Patients, and those who treat them, also need a voice in this process. Only you have the power to make that happen. Please sign on to co-sponsor the Lyme & Tick-Borne Diseases Bill when it is introduced. Thank you." (Give your name, address, phone number)

For more information, go to the Lyme Disease Association site and click on "legislation" on the top menu.

Saturday, March 14, 2009

Thank you, thank you for this film: a review of Under Our Skin

This post originally appeared on gratitude365.


Watched Under Our Skin last night. It made me angry. It made me cry. While I cannot make sense of our incompetent and what appears to be politically and financially motivated medical community, I did, thanks to this film, start to make sense of what I've been feeling, physically and emotionally.

More than one person they interviewed said they'd consider killing themselves if they didn't have family obligations--the pain, neurological dysfunction, emotions, lack of support (medically and otherwise) is so intense. And, frankly, going through this myself, I can see how one could feel so hopeless. So, GO SEE THIS FILM, if not to support your Lyme suffering friends (i.e. me), but to protect yourself and your family from this spreading, debilitating, constantly misdiagnosed disease. It's easily curable if caught early and treated appropriately, but people like me, who make it to "stage 3" might not ever get well.

Jordan Fisher Smith, the Sierra Nevada park ranger interviewed in the film gave me hope, when he said that after years of antibiotics and seeking out the top Lyme doctors in the country he was "finally getting his life back." Sadly, I read today that since the filming, he's now divorced. The toll of Lyme on families is that great. Mandy's story too was inspiring as--thanks to her antibiotic regiment--she goes from nearly being crippled, to swimming laps by the film's end.

I'm so grateful for Andy Abrahams Wilson at Open Eye Pictures for taking on this topic and raising the awareness of tick-borne disease. I hope this film is wildly successful and opens the eyes of doctors, insurance companies, government officials, and the friends and families of Lyme patients. I'm also feeling so grateful to have found a Lyme-treating doctor and living in state where he can practice freely, because as you'll see in this film, that is not the case for many.