In the midst of my continued struggle to overcome what to me HAS to revolve around tick-borne illnesses, I fully realize that the lack of a straightforward path affects far more people than myself. Any gain or loss often gets shared because the lot of us share our struggles and report on what helps and what fails. Of course, because this illness possesses a great deal of variation, a singular set of rules on these do not universally apply. We can only endeavor to apply what seems to best fit our individual situations from what resonates from someone else's experience to our own.
Yet why this is so and remains so has as much to do with the politics and economics of tick-borne illness as any unique characteristics of it to an individual patient.
That is, the official bodies like the Centers for Disease Control (CDC) and Infectious Disease Society of America, as well the insurance industry which shapes and benefits from them, all have collaborated to say persistent or late stage Lyme/Co-infections does not exist. The supposedly educated journalists covering them ape the same language, even when their own work could call this into question.
Here's my example: Some months ago, a writer for Scientific American, one who later claimed independent knowledge on the subject, authored a piece comparing the spirochete of Borrelia Burgdorferi (or Bb) to that which causes Syphilis (i.e., Treponema pallidum). Since both share the same shape, they move very similarly, relying on the ability of a kind of corkscrew propulsion. I know, that is not a very precise description.
But their abilities to move, despite the obvious similarity, are not the same. The key for me came when the author described what happened in a body with these spirochetes inside of it. The spirochete causing Syphilis slows down when it traverses more viscous tissue, lacking torque or thrust to proceed unencumbered.
Bb behaves differently. In fact, the Lyme spirochete not only does not slow down in more viscous tissue, IT SPEEDS UP. The implications for this contrasting behavior should be striking. How can the two be the same? How does the issue of propulsion affect diagnostic testing? How does it affect treatment or "cure"? Who does one kill a moving target that is capable of being more evasive?
The first commenter asked about treatment of Lyme versus Syphilis. The author gave the same tired CDC-based commentary about the "short course of antibiotics" being curative in both. No acknowledgement of any problem, no reason why they are the same. I immediately question this and she reaffirms having "the latest" information.
I use her own article to support my view and ardently press forward as to how she could endorse that. Well, she did not engage me. No, instead, SHE DELETED MY COMMENTS. No independent thought. I guess the deletion just left me as seeming to be yet another "anti-scientific" crank. To me, it seems to question medical experts, even when they are more company shills than unbiased scientists, gets labeled and dismissed.
This is why without even knowing all the facts, I am ready to listen to those who take issue with the multiple vaccine schedule, among other aspects. I recognize the goading and bullying, which is not about science at all. The same thing occurs with GMO food products, including the bullying and castigating of those who question the usage as "too stupid to know what's in the food." When a former editor of the New England Journal of Medicine questions the reliability of what is published, I listen, too. "Paid science" may be more pseudo-science than science. There sure can be unhealthy questioning of authority; I've seen my share of it whenever some crank on the internet thinks he knows more about history than a PhD who's published on the exact subject. But there is also healthy and necessary questioning, especially when information is slanted or cherry-picked to privilege a given position.
I think that is happening here with Lyme and the other tick-borne illnesses. "Journalists" no longer question; they merely take stenography. I also have a BSJ in journalism and I know at least one of my former professors would be spinning in his grave if he got wind of this malpractice.
Since the progress for many if not most of those with tick-borne illnesses is hampered by this current situation, I have started a petition on whitehouse.gov to try to address the problem. I am calling for the creation of a type of blue-ribbon panel to look into the matter.
Find it here: http://wh.gov/...
I ask that such a group include those who have done groundbreaking work on the subject, like Dr. Horowitz and the lab Igenex (their sales director has impressive credentials himself) as well as some well-known people who have suffered from this illness, such as Amy Tan, Daryl Hall and Elena Della Donne.
Perhaps I was inspired by the "ice bucket challenge" for ALS. I believe that cause is worthy. But ALS is at least acknowledged as a disease. Lyme/Co-infections is often misunderstood and family/friends even sometimes have zero sympathy for the suffering person, as if the patient is faking or has some odd psychological problem.
A panel did not entirely change the way AIDS was treated in this country (after all, Magic Johnson resigned from it), but it did play a small role in changing the conversation and getting attention for a real medical problem. Likewise, Dr. Horowitz has said that he believes that advocacy and politics might be where he can best serve those with this problem versus continuing his practice of medicine. Already, he has gotten laws proposed that prevent (usually insurance company) complaints that jeopardize the medical licenses of doctors that follow the guidelines of the International Lyme and Associated Diseases Society (ILADS).
That step is one of many that helps those with tick-borne infections. Let's do this. Sign and share, please.
Note: I edited the link to give the generic address provided to me.