Posts Tagged ‘Lyme Press’

‘My Lyme Disease Is Not The IDSA Lyme Disease’ Responses

// December 13th, 2010 // No Comments » // Links To Other Lyme Site Posts, Lyme Media, LymeBites Blog

Last week Ashley wrote her response to the disparaging article written in the Chicago Tribune about Chronic Lyme Disease as well as the doctors who treat with long term antibiotics.  She titled it ‘My Lyme Disease is Not the IDSA Lyme Disease’ and urged us to follow her lead with our own replies.

Later that day I had my own response finished and posted here on LymeBites.  Since that time there have been at least 11 bloggers and patients responding to the article with their Lyme disease versus the IDSA Lyme disease portrayed in this article.  Here’s a list of the responses posted so far.  A truly amazing job by these writers in showing the other side of this disease.

Ashley – My Lyme Disease Is Not The IDSA Lyme Disease
Eric – My Lyme Disease Is Not The IDSA Lyme Disease
Molly – My Lyme Disease Is Not The IDSA Lyme Disease
Andrew – My Lyme Disease Is Not The IDSA Lyme Disease
Kenneth – My Lyme Disease Is Not The IDSA Lyme Disease
Alix – My Lyme Disease Is Not The IDSA Lyme Disease
Brooke – My Lyme Disease Is Not The IDSA Lyme Disease
Kim – My Lyme Disease Is Not The IDSA Lyme Disease
Candice – My Lyme Disease Is Not The IDSA Lyme Disease
Alyson – My Lyme Disease Is Not The IDSA Lyme Disease
Heather – My Lyme Disease Is Not The IDSA Lyme Disease
Kim T – My Lyme Disease Is Not The IDSA Lyme Diseasse
Planet Thrive – My Lyme Disease Is Not The IDSA Lyme Diseasae
Sharon – My Lyme Disease Is Not The IDSA Lyme Disease
Six Goofy Kids – My Lyme Disease Is Not The IDSA Lyme Disease
Marla – My Lyme Disease Is Not The IDSA Lyme Disease
Dawn – My Lyme Disease Is Not The IDSA Lyme Disease
Joanne – My Lyme Disease Is Not The IDSA Lyme Disease
Five Lymies and a Baby – My Lyme Disease Is Not The IDSA Lyme Disease
Jenna – My Lyme Disease Is Not The IDSA Lyme Disease

My Lyme Disease Is Not The IDSA Lyme Disease – Eric Rutulante

// December 8th, 2010 // 25 Comments » // Eric's Blog, LymeBites Blog

This is my response to the article in today’s Chicago Tribune titled “A Dubious Diagnosis”.  If you haven’t read it you can read it Here.

In the 1800’s, a Hungarian physician by the name of Ignaz Phillip Semmelweiss, who was later described as the “savior of mothers”, realized that many women were dying due to infection after childbirth.  5 women in 1,000 died in deliveries at home or by midwives, while those delivered by doctors in the best maternity hospitals had a death rate 10 to 20 times higher.  By 1847 he had discovered that the incidence of infection was drastically reduced by the simple use of hand disinfection in obstetrics.  Many of these doctors were performing autopsies on women who had died, and then going to deliver children without washing their hands, thus spreading the infection.  (1)

Dr. Semmelweiss’ finding was not confirmed until years after his death when Louis Pasteur developed the Germ Theory.  At the time that he presented his findings, the doctors of the time “were offended at the suggestion that they should wash their hands; they felt that their social status as gentlemen was inconsistent with the idea that their hands could be unclean.”  (2)

To us in our day and time this makes perfect sense.  Nobody would deny the fact that washing your hands can help prevent the spread of germs and infection.  We now teach our children in school the importance of hand disinfection.  Most businesses, Dr’s offices, school and hospitals have hand sanitizing stations located throughout their buildings.

This is one of hundreds of examples of the medical community’s over-confidence in what they knew, but then later find to be inaccurate upon further investigation and the passing of time.  This makes it clear to me that as far as medicine goes, whatever we think we know, we may find out we don’t really know at all.  “There’s little good evidence that chronic Lyme disease exists…” as the article starts out, immediately makes me think of the story of Dr Semmelweiss.

19 months ago my entire life came to screeching halt one day when I woke up and had trouble seeing out of one eye.  After 20 plus years of a strange medical history with lots of problems and few answers, my health was rapidly declining as the bacteria finally took control of my body.  Within days I had severe numbness, tingling, excruciating pain all over my body, headaches and cognitive difficulties.  5 weeks of tests led to a Lyme disease diagnosis with a CDC positive test result.

I was given 3 weeks of medication and told I’d “feel better in a few days”.  At the end of the 3 weeks when I was sicker than when I started, I was told there was nothing else that could be done, I had been treated.  This didn’t sit right with me.  I began to do some research.  There I found that there was no clear cut information available on this disease, because of the never ending controversy surrounding Lyme.  I’m an intelligent person, and took to researching what I was finding to be the two sides to the Lyme controversy.  I thoroughly researched both sides of the argument.  To be honest, I hoped the idea that Lyme was easy to cure was correct, because I didn’t want to be as sick as I was, or get any sicker.

But it became clear I needed to find a Lyme literate physician.  Eventually I was able to get in to one, who diagnosed me with not only Lyme disease, but two of the co-infections (Babesia and Bartonella) commonly transmitted with Lyme disease.  Most people don’t realize that a tick is a reservoir for bacteria and viruses.  If a tick transmits Lyme disease, you can be pretty sure other bacteria will also be transmitted.  I’ve heard this referred to as “Lyme complex”, because it is not just Lyme disease, but a host of other infections that come along with the Lyme bacteria that have to be treated.  I noted none of this was reported in the Tribune article.  Even the IDSA (Infectious Diseases Society of America) openly admits the rise of certain co-infections, so I found it surprising the reporters did not approach that subject.

19 months later, I’m much better than I was that day when I woke up so sick.  But a lot of damage has been done to my body with the bacteria allowed to run rampant for at least 20 years, and that takes time to heal and recover from.  What I know is this:  Dozens of specialists couldn’t find anything wrong in their area of expertise, others who attempted to offer “cures” by prescribing pill after pill, did not have the answer.  I then test positive for Lyme disease, see a Lyme literate doctor, and suddenly those mysterious health problems that plagued me for so many years began to dissipate.  Common sense would dictate with that information that being treated for Lyme is actually working for me!

I am not a medical textbook.  I am a person.  As one of my doctors learned about Lyme disease through me, she said “I now know that you have to treat people, not textbook cases”.  No matter how neat and pretty they want to package this disease, as being hard to get, easy to cure, and not likely to cause long lasting effects, the disease is not like that and every person is affected differently.

I am still in treatment, and having results with every step along the way.  It’s not even logical to deny the need for long term treatment for me, because I’ve had it and it is working.  I took offense to the tone of the article that there’s no proof that long term treatment can be effective.  I’d like to say that I am your living proof.  And I am one of hundreds of thousands of people who can also serve as living proof.

The reporter seems to insinuate Lyme patients are searching for something, and in doing so find Lyme disease and “jump on the bandwagon”.  I became more than a little defensive while reading this.  It felt like a personal attack on the living hell I’ve experienced in the past 19 months, not to mention the 20+ years of unexplained health problems I had before diagnosis.  I would never choose Lyme disease.  I wouldn’t purposely lose my home, my job, my life that I once knew to hop on a bandwagon with others.  Not to mention the cost.  As the article discusses, many of us pay tens of thousands of dollars for our treatment.  Why would I ever choose all of that?  Chronic Lyme disease is not a choice, it’s a result of improper education to doctors and patients alike.

When my Lyme literate doctor sat me down to discuss treatment options, he presented me with the IDSA views of Lyme and its treatment, as well as that of ILADS (International Lyme and Associated Diseases Society, an organization that believes in long term treatment of Lyme disease).  He explained the risks involved with long term treatment in detail, and then let me make an informed decision based on the information he provided me.  I made the choice for long term treatment and antibiotics, once armed with all the proper information.

I’m disappointed in the fact that the article was so one sided, and even being one sided did not present a clear picture of this disease.  It’s my hope that the Chicago Tribune, as well as the reporters who wrote this article, will take the opportunity to show both sides of the story, not just the IDSA’s version of the disease.  It seems to me that unbiased journalism would be to share both sides of the argument, and not pick either of the sides in doing so.  This article does not seem to convey that, and I call upon the Tribune to correct that and share our side of the story.

(1) Wikipedia (sources cited in link),
(2) New York Times, October 7, 2003; The Doctor Who Made His Students Wash Up

Chicago Tribune Article on Lyme Disease

// December 8th, 2010 // No Comments » // Eric's Blog, LymeBites Blog

On Wednesday of this week a front page story is supposed to be published in the Chicago Tribune.  It seems to be an IDSA slanted article, and not written to help those of us with Lyme disease or the Dr’s treating us.

I will be posting info on the article once it is published and I’ve read it, so that I can respond appropriately.  Ashley is planning on posting something on Lymenaide also.  Just give us time to read the article, process and respond and then we’ll share our feelings and suggestions about the article.

The one thing I think is important is for people not to respond in anger.  I know with Lyme, when I get angry, I start to lose control of my thinking process.  So for me to react in anger, usually comes out wrong.  So I suggest when people read this article, they not immediately sit down and respond with anything nasty or out of anger, that will not help our cause at all.

Well thought out responses, that actually have something to say, instead of just anger, will get more attention.  So if anyone wants my opinion, there it is…please try and respond in a way that will help our cause, not hurt it.

And stay tuned, Ashley and I (and many others) will have our responses to the article and be posting them on our websites.

It’s always a good time to band together as a community, especially when we’re being attacked (or our Dr’s) as a community.  I hope whatever the article may say, if it is in negativity, that we can find a way to turn it into a positive by helping to raise awareness of our side of the story in response to any negativity in this article.