The Pandora Lyme Box

*I wrote this back in July 2015. But all is still relevant, if not more so. When there are over 300,000+ new cases of Lyme a year across our nation, why aren’t the CDC and IDSA doing so much more for the population at large? And why aren’t these organizations being held more accountable for their actions or lack of actions. #LYMELIESCOSTLIVES

Hi out there! Today I listened to the Diane Rehm show and if you caught it as well, it was a program about Lyme disease. Honestly, it didn’t shed any light on the disease for me personally and yet again, some of the guests continued to perpetuate some of the Lyme disease myths floating around. Now granted, I am not a scientist, I am not a researcher, and I am not a doctor. But I am one of the many suffering from this disease so I have read as much information as I can get my hands on about Lyme and I will continue to do so. At this point in my game of Lyme, I feel like I know enough to make fairly decent decisions regarding my own care.

Listening to the program and reading comments on Rehm’s FB page really struck a chord with me in that there are so many people out there suffering from the elusive Lyme bacteria, Borrelia burgdorferi (B. burgdorferi). And so many of us are not even close to getting the help we need. The medical community is at odds as to what to call the condition where patients suffer symptoms of Lyme after treatment; it is also at odds with whether the bacteria is actually present after treatment or not. On the show, Dr. John Aucott from Johns Hopkins Bayview Medical Center basically agree that yes, in rare cases, patients still suffer from symptoms after treatment but he would not call it Chronic Lyme. He sidestepped this so many times…well anyway. Instead, he made it clear that if, and only rarely, patients have lingering issues, it is due to an immune response but not due to persistent bacterial infection. He stated this as a fact when in reality, this has not been proven as not true in a human subject.

**The two awesome posters above are from a wonderful website and patient advocavy.Please visit http://www.lymestats.org

But how do we even know or how can we even begin to dismiss the idea that this bacteria, one of the most, if not the most, complex and intelligent bacteria we know of, cannot persist? Just because we do not have the means or the way to find out should not lead then to dismissal. I think back to things in the past that were dismissed and then later, after the technology and testing and imaging came to pass, after the WAY to see something became clear, we changed our minds because we actually had the TOOLS to figure it out? Now I am not necessarily trying to make direct analogies here but think about this: women used to be treated as mentally ill if they suffered certain symptoms after delivering a child. Ever read “The Yellow Wallpaper” by Charlotte Perkins Gillman? But then as years went on and doctors focused and researched, this “condition” turned out to be a physical one and not merely a “mental” condition we now call postpartum depression. The same comparison be said about depression in general. We didn’t know what it was, we know now, we know it can be hereditary….and on and on.

I just cannot then figure out why the medical community, in this country for sure, is so fixated on sticking to standards set by IDSA, the Infectious Disease Society of America, in 2006. Like many of us, I wonder why more money has not been put into finding out so much more about a disease that is now affecting 300,000 plus here in the states? I just cannot wrap my head around it!

SOURCE: http://nocturny.deviantart.com/art/Pandora-s-box-340317104
SOURCE: http://nocturny.deviantart.com/art/Pandora-s-box-340317104

I know I live in a bubble, don’t get me wrong. I have yet to have anyone in my life doubt that I am still suffering from something, no matter what the terminology. Not everyone has that kind of support system. Why don’t more medical and science professionals care about Lyme? Or why are they staying away from researching Lyme? Let’s just say that the radio show today did not answer any questions for me. In fact, it only made me think about more questions I have about Lyme disease! On that note, dearies, I must take leave of you.

Until we meet again, peace -B

How Are Lyme Disease and AIDS Alike?

The Deafening Silence Returns: Lyme and AIDS.
Do you have any other examples of how AIDS and Lyme disease are similar as epidemics? Or different?

 

Since I have some time to do more research right now and the motivation to do so, I have been digging into the aspects of the Lyme controversy in our country (USA).  I have been seeing many posts and articles recently that in some way or another compare Lyme disease and its prevalence to that of several aspects of AIDS epidemic here in the USA. As a young 10-20 year old growing up throughout these crisis years, the epidemic was not only the insanely tragic, it was a completely mishandled disease from the start, and ignored way too long by the science and medical fields, think CDC, think Infectious Disease Society of America, think NIH, and on and on, thus costing thousands upon thousands of lives.  I just wasn’t so sure that comparing these 2 epidemics would work logically.

But what are some reasons I thought this analogy wouldn’t work? Well, Lyme doesn’t necessarily work as quickly in killing the body as AIDS has and still does (although now we have many ways to treat this infection so there are less deaths, thank goodness). Lyme is a different animal in that respect. The dead bodies of Lyme victims are not necessarily piling up on anyone’s doorstep. We don’t see Lyme disease in the news every day like we did with AIDS. Also, I felt that somehow by comparing the two infectious diseases that I was somehow trying to diminish the horrendous impact that AIDS made on people and their families, and especially on the gay community. I have no idea why I felt this way. I just did. Actually researching though has led me to a new conclusion.

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In fact, Yes, the Lyme epidemic is in many ways VERY similar to the AIDS epidemic. 

Let’s roll it back a few years, I mean DECADES.

“Besides Acquired Immunodeficiency Syndrome (AIDS), Lyme disease is now the most important “new” disease facing us today.”

Let that just simmer for a moment. “Most important.”

The above quote is taken from an unclassified scientific report conducted by our military. The report is titled, TICKS AND TICKBORNE DISEASES AFFECTING MILITARY PERSONNEL.  Written in September 1989, this report is ” Approved for public release; distribution is unlimited. Conducted by Jerome Goddard, Ph.D. Medical Entomology Section, Epidemiology Division, USAF School of Aerospace Medicine, Human Systems Division (AFSC) Brooks Air Force Base, Texas 78235-5301.

Again, this extensive report was written in 1989 after extensive research. By our military. Here we are, almost 30 years later, and let me impress upon you, dear reader, there has been MINUSCULE, almost NIL, progress in researching and understanding of this disease, accurate testing and diagnosis of this disease, and in the treatment of this disease. 

In 2013, the CDC reported findings from 2 separate entities that there are approximately 300,000 + new cases of Lyme disease every year. Please find those reports here:  http://www.cdc.gov/lyme/stats/humancases.html. The CDC states that it receives about 30,000 cases of Lyme a year (this number is very low as these are only cases reported that meet the almost impossible requirements to identify Lyme set by IDSA.) The other reports the CDC lists on its page are both positive tested Lyme cases and clinical diagnosed Lyme cases, thus the 300,000+.

As Lyme sufferers, like our fellow AIDS victims, we are:

1. Ostracised.

And yet. Here it is 2016. Absolutely nothing has changed. Just like AIDS sufferers, Lyme patients are shunned by doctors who have no experience with Lyme at all, or who rely strictly on the CDC testing criteria and the IDSA treatment guidelines. Even after all of these years, IDSA has yet change any of its treatment guidelines since 2006 when it published its dictated, repressive, and self-serving protocols. We are not treated well nor correctly by the medical field. I myself have been to several doctors who did not believe me nor my symptoms and just blew me off. We are labeled as hypochondriacs and/or attention seekers by both the medical community and our families and friends. Not being believed about a sickness that is so REAL is devastating both physically and emotionally.

2. Untreated.

Similar to AIDS patients in the early 80s and into the 90s, Lyme victims are not receiving the needed treatment to assist them in healing. Since there is so little being invested in Lyme research and understanding, patients must go to extreme lengths to find a doctor who will take them on and treat them as needed according to many skeletal, neuro, cardiac, and on and on manifestations of this disease. Lyme Literate doctors or LLMDs, do not take health insurance because of the possible legal implications. There have been many doctors brought before state medical boards and stripped of their medical licenses because the doctor had not followed the strict IDSA treatment. So our treatment, if we can even be diagnosed correctly, is extremely limited. Many of us seek our doctors in other states and in other countries.

3. Denied

Like many of those ill with AIDS, we are denied at every turn while trying to get diagnosed and treated promptly (this can happen via better testing and meticulous review  and understanding of clinical symptoms). We are told that our symptoms are psychosomatic, all in our head, and we are brushed off or completely misdiagnosed with an autoimmune disease of which Lyme can and is in many, many cases, the root cause, such as Lupus, Rheumatoid Arthritis, MS, ALS, Fibromyalgia, or Chronic Fatigue just to name a few. We are denied coverage by health insurances due the published treatment guidelines from IDSA a DECADE ago. We are denied the opportunity to keep our jobs, our families, and our dignity.

4. (we are) DYING.

But, people might say, well, we never really hear of anyone dying due to Lyme disease whereas throughout the 80s there were reports every single day about AIDS causalities. This is true. First and foremost, I will say again, all aspects of Lyme are being silenced on every front, from politicians to medical practitioners, from health insurers to the media outlets. But the biggest reason we do not hear about Death by Lyme is because an exorbitant amount of Lyme disease sufferers take their own lives. We take our desperate matters into our own hands. Suicide among Lyme victims is in itself an epidemic. Much of what we know about this is anecdotal, again, due to lack of funding and research. For more information, this is a great start “Lyme Disease and Suicide, an Ignored Problem.”

These are just a few things that Lyme disease and its victims has in common with AIDS and its victims. And to refer back to the quote at the beginning, we’ve known for over 30 years that Lyme disease is an EPIDEMIC.

This is what happens when facing a silent epidemic
Source: http://www.lifeofpix.com

 Is Lyme an epidemic? Yes, it is and we’ve known this for over 30 years! Unfortunately, it is a silent one that leaves us rotting from the inside out, slowly but surely. Hopefully, like the AIDS community, the Lyme community can continue becoming a formidable movement, one that will hopefully save lives now and in the future!

Do you have any other examples of how these 2 diseases are similar? Or different? Could or should we possibly as a community learn from the AIDS epidemic and how it was forged into a massive movement? Just having all kinds of thoughts on this topic. Please leave a comment below. Thanks for reading. Peace – Belle