Under the Lymelight: The Realities of Chronic Lyme Disease

Pete Smith is a stand-up guy with a big heart who really cares and looks out for his people.  Recently, he’s hit a pretty big bump in the road that’s going to take a lot of energy to get past and he could use some help so he can start living the life he deserves.  I’ll let him speak for himself on this one.  His story:


In December 2007, I graduated cum laude from Harvard University with a degree in Psychology. After completing my last semester in a study abroad program in Fiji, I spent the next few months traveling through New Zealand, Africa, Thailand and Hong Kong. I then returned to Boston, MA to begin working as an Associate Consultant at Axia, a business management consulting firm. I lived a fast-paced life of work, play and travel, and I loved every minute of it. Then, all of a sudden, it came to a screeching halt.

In January 2009, I began feeling fatigue and aches that seemed to be beyond the common flu. A few months later, I blacked out at work and was in so much pain I could barely get out of bed. For the next nine months, I saw over 10 specialists in Boston, including the hospital’s top doctors. After 90 pages of blood tests, CT scans, endoscopies, colonoscopies, biopsies, MRIs and any other test you can think of, the doctors remained clueless. The symptoms continued to progress and I started noticing new ones, including cognitive difficulties (trouble reading and remembering, losing short-term memory, mixing up phone numbers and addresses, and a few times forgetting which apartment I lived in); crippling bone, muscle and joint pain; constant headaches, including migraines; weight loss of 25 pounds; extreme fatigue; insomnia; hallucinations; and many others. There were days when I was not sure that I would survive through the night.

Initially thinking of Celiac disease, with the increased symptoms I began to suspect Lyme (which I had when I was six years old living on Long Island). At this time I did not know the political chaos surrounding this disease. When I mentioned Lyme to a doctor, it looked as if I had suggesting drinking Satan’s potion to cure myself. Doctors would stammer, “It’s definitely not Lyme, trust me,” and “Maybe it’s HIV. Let’s check again [for the fourth time].” My primary care told me that it was all in my head; that I should get more sleep and “stop complaining about the pain.” He said I would never find a cure to an imaginary illness so I should learn to deal with it and stop making it worse than it already was. I left each doctor’s office in tears of frustration, pain and anger. How could it be that these world-class doctors would refuse to even test for, or even consider, Lyme disease? Then I learned the true politics of Lyme disease.

In 2006, the Infectious Disease Society of America (“IDSA”), an independent medical association, released the Lyme disease guidelines. Patients with chronic Lyme disease were shocked to see this group of doctors completely denying that Chronic Lyme disease even exists. The panel found that in no circumstances should patients be treated with more than 30 days of antibiotics, and oftentimes less is sufficient. It did not acknowledge that Lyme disease can exist beyond the initial infection, and insisted on a positive Lyme test to show that a patient had been infected at all. This test has been found to be over 50% inaccurate. It turns out that nine out of the 13 board members have direct conflicts of interest, including being on the payrolls of pharmaceutical companies, holding patents to Lyme vaccines and diagnostic tests, and in some cases, even receiving money directly from insurance companies who do not want to pay for long-term antibiotics (oral and intravenous), one of the few, albeit risky, paths to a cure for many Chronic Lyme disease patients such as myself. Despite the Attorney General of Connecticut, Richard Blumenthal’s antitrust suit of the IDSA, the guidelines have persisted. Just recently it was reported that the guidelines were reviewed by an “independent body,” and that not a single change needed to be made. This independent body was of course found to have direct ties to the IDSA. In the true peak of irony, the head of the new independent review committee was in fact the previous head of the IDSA itself.

Lyme disease is an epidemic in this country, surpassing HIV to become the number two infectious disease our country currently faces. This is not limited to the northeast as cases have sprung up all over the east and west coasts. Yet, due to these corrupt IDSA guidelines, doctors are too scared to diagnose Lyme disease and insurance companies are all too quick to deny any payments related to this “nonexistent” illness. Lyme patients have bankrupted themselves while becoming increasingly sick, -oftentimes ending in death. Meanwhile, Lyme-literate physicians such as Dr. Joseph Jemsek, previously of North Carolina, struggle to treat patients. Dr. Jemsek was sued by Blue Cross Blue Shield of North Carolina for $100 million since he refused to follow the IDSA guidelines. He lost the case and his license to practice medicine in North Carolina was suspended for one year, forcing him to relocate to South Carolina and currently, Washington, DC.

This is an unfortunate story of corruption, deceit and death. This is a story which needs to be exposed and I need your help in doing so. I have lost nearly everything to this disease: my apartment, my job, my friends, my money and my independence. But it’s time for the suffering of Lyme patients around the United States to end.

Please contact me if you would be willing to work to expose this corruption. I would be happy to speak with you and answer any questions you may have about this disease and the experience that I am going through.

Thank you so much for your consideration.
Peter Smith

pssmith2@gmail.com

This Monday, June 7th, Pete will have an IV put in for approximately the next six months. The medication Peter will be receiving through the IV will cause him to feel extremely sick (even worse than now), and he will most likely be unable to get out of bed on a regular basis. The upcoming six months will be filled with pain and fear. Peter needs your support.

This IV will cost $1800 per WEEK. Peter is expecting to have the IV for up to 6 months = over $40, 000. Any donations for Peter would be greatly appreciated by all of his friends, family, and of course Peter. Anything you can spare, even just a few bucks could help!

CLICK HERE TO DONATE TO PETE VIA PAYPAL (send to pssmith2@gmail.com)

Visit the Facebook Group and share your thoughts!

Regardless of how you feel on this issue, Pete and his family need money to afford this aggressive treatment.  As a peer of Pete, I am deeply discouraged to think of him forced to spend these years of his life constricted to his bed, robbed of the opportunities I enjoy every day to be out in the world laying the foundation for my future.  If you can’t afford to donate, you can help by spreading the word.  This is the internet after all.


Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s