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:

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.

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.

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)

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:

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!

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.

Friday, March 13, 2009

Diagnosis du jour: Lyme Disease

This post originally appeared on gratitude365.

If you've been reading this blog for any length of time, I often subject you to the state of my health. Today is no exception. And before I get to the diagnosis du jour, a recap the last nine months:

Let's start with an emergency c-section in April. It took a month to get off the Vicocin. In May, I got so sick, in hindsight I believe it was Salmonella poisoning (remember the whole tomato scare)? In June I had mastitis. In July I had strep throat. In August, my dentist took a crown off an old root canal, cleaned the decay and put a new crown on. In the same week, I had the Mirena IUD put in. Three days later I had the OBGYN take it out. I couldn't breathe. I couldn't think. I felt weak and confused. Meanwhile I broke out in a rash on my shins. My primary care physician thought it was an allergic reaction to the Mirena.

Two months later, I still had the rash. And I kept getting pink eye (or so I thought). I go to the dermatologist, he says the rash is psoriasis. He tells me not to go crazy reading about it on the Internet (yeah right). So, I end up on the National Psoriasis Foundation site and stumbled upon Psoriatic Arthritis, which explains my eye inflammation and the random nerve/muscle/joint pain I'd been having. In October, a rheumatologist and an MRI confirm PsA. And so the struggle began to get JB off the boob and onto a bottle (a whole diatribe in itself), so that I could go on iummosuppressants.

I started to have breathing problems and chest pains, which landed me in the ER, and a subsequent VQ scan (I literally had to breathe radioactive gas), a chest CT, and a pulmonary function test. Until I could wean JB, they started me on a course of prednisone, which calmed my breathing down, but made my psoriasis crazy--it spread and soon I was covered from head to toe in red scales. Remember the story of Job? That was me, except I still had my family and friends, thankfully.

The day before I was supposed to learn how to inject myself with Humira (which, BTW, without insurance is $1700 a month), the new doctor I'd been chasing, returned my call. I'll spare you the series of synchronistic events that lead me to him, but seriously, a Godsend. Believing, like me, that this whole thing is infectious related (I mean, look how many bacterial infections I've had), he started me on antibiotics in November and told me to have my tooth pulled, which I did the week before Thanksgiving. The oral surgeon likened the roots to dry rot. He is one of the few mainstream doctors I've talked to that considered a connection between an on-going infection--perhaps the tooth--and my arthritis. He, ironically, at the time mentioned Lyme Arthritis to me. Ding, ding, ding. Six weeks later, the labs and new doc (a three-hour car drive away), confirm Lyme.

So here I am. It’s been two weeks or so that I’ve lived with the Lyme diagnosis. Which doesn't mean I don't necessarily have PsA, along with Ankylosing Spondylitis, but it does mean that Lyme could be the trigger for for these autoimmune conditions. And the theory is that if you can get rid of the bacteria in your system, then perhaps you can stop the autoimmune attack. And that to me sounds more encouraging than the path I was going down of steroids, NSAIDs, and DMARDs, (disease modifying anti rheumatologic drugs) indefinitely. I read a statistic that it can take 22 months and seven doctors to be diagnosed with Lyme. I feel fortunate it didn't take me that long.

I don't know a lot about Lyme yet, but I'm starting to shift my perspective from preventing disease progression to hoping for a cure. I'm so grateful for everyone who has and continues to come along side me to listen, lament, and love. Especially, my dear husband. And even Ry-Ry said to me the other day, "you fragile, mommy?" And to that, I'm reminded of a Phillips Brooks quote, “I do not pray for a lighter load, but for a stronger back.” Because with with a 3.5 year old, a 9 month-old, and a high maintenance cat, my load isn't getting lighter anytime soon.

If anyone out there reading this has PsA, AS, or Lyme, please let me know via email or commenting on this post. I'd love to hear how you're managing and maybe compare notes.