Lucky Dog

Meet Oz. He resides with my parents. He is very intellectual. He is a great swimmer (runs in the family). He sheds a lot. If you turn your back on him at the beach he’ll eat as many dead fish as he can before he is yanked away from the seafood buffet. He gets upset when you sit in “his” spot on the couch. He is not named after Ozzy Osbourne or the Wizard, he is named after Oswald State Penitentiary. He makes friends everywhere he goes. He has been vaccinated for Lyme disease.

Wait… what?

Yes, vaccinated for Lyme disease. Man’s best friend can be vaccinated for Lyme disease, but man can’t. 

You can read more about that here: http://www.wbur.org/2012/06/27/lyme-vaccine

Ripped from the Headlines

I am a huge fan of baseball and the NY Yankees. But today I am turning my attention to Tom Seaver and that other NY team... The Mets. For you non-baseball fans, Tom Seaver is a legendary pitcher whose career spanned 19 years. He played for four different teams but his time with the NY Mets is the most noted.  He was elected into the Baseball Hall of Fame in 1992 with 98.8 % of the vote; the highest voting percentage ever. He and his wife own a vineyard in Napa that produces Cabernet Sauvignon in limited production (between 400-500 cases per year). Tom Seaver has Lyme disease and he recently spoke out about his battle. 

Click here to read an article that ran in the Daily News on March 15, 2013.

Click here for another article about Tom Seaver, where he is applauded for speaking out about his struggle with Lyme disease. 

Directly beneath the headline in the first article I linked to about Tom it reads: “It’s been a living hell of uncertainty, confusion, depression and downright fear". You hear this a lot when you speak with patients about Lyme disease, but for the most part it is spoken to each other in support groups and not written about in a national newspaper. It is a big deal that he chose to speak out about it, as evidenced by the second article I linked to which stated: “Tom Seaver continues to show his greatness and courage off the field as he did as one of the greatest pitchers in baseball history,” said David Roth, co-chairman of the Tick-Borne Disease Alliance. “Thousands suffer from Lyme and other tick-borne diseases around the country and are afraid to tell family, friends or co-workers about their suffering because of the stigma attached to these devastating diseases. Tom Seaver has demonstrated that being open about tick-borne diseases is the critical first step to raising awareness as well as government and public support for research to eradicate these terrible illnesses. Everyone at TBDA wishes Tom Seaver and his family well during his recovery from Lyme.”

And now a smooth transition from baseball to "The Real Housewives of Beverly Hills" 

I have never watched RHOBH, but a few months ago a friend of mine who is an avid fan of the show mentioned to me that Yolanda Foster, one of the women featured on the show, had been diagnosed with chronic Lyme disease and was openly discussing her experience. I did some research on her, and I am now a huge fan. She has a large on-line presence and interacts with all of her followers and fellow "Lyme Warriors". She recently received the Star Light Award from the Lyme Research Alliance (LRA). She was selected for the honor because she has spoken openly about her struggle with chronic Lyme disease and her strenuous treatment. Click here to view the speech she made at the LRA "Time for Lyme" Gala. It just shy of twelve minutes, but it is a very moving speech which gives a glimpse into the struggle that so many chronic Lyme disease patients go through. If you would like to know more about The LRA and their event, here is the full press release. 

I haven't been shy about discussing my experience with chronic Lyme disease, but it appears I am running against the norm. I do not have the social clout of Tom or Yolanda, so I am appreciative that they have chosen to share their stories as part of the effort to bring more awareness to a disease which is literally in our backyards. I hope this type of advocacy on behalf of Lyme disease patients eventually leads to more support for the research which will ultimately produce clearer guidelines for diagnosing and treating the disease. 

CliffsNotes

Leading up to my diagnosis (the abridged version): 
March 2011: I awoke with a fever and a mysterious traveling rash that moved around my face and neck for about a week and then vanished; the source was never discovered.

Spring and Summer: A spike in joint and muscular aches/pains was easily explained away by my constant training for triathlons; which I continued to participate in despite my body being cranky and suggesting I slow down.

Late August:  I lost feeling in my hands and feet, along with some cognitive function.  My short term memory and ability to focus were also severely impaired.

Early September: Blurry vision was added to the mix. I made an appointment to get a physical. I explained my symptoms to the physician as well as the fact that I had previously been treated for Lyme disease in 1994 and was 100% certain I had it again; the vision and memory issues were what plagued me the first time. A good amount of blood was drawn, and I was tested for everything under the sun. All of my blood work came back negative or normal. I was told I was in good health.

Late November: I visited a different physician (it took me awhile to get an appointment) who began treating me on the spot.  The symptoms l outlined during our first meeting, coupled with a “barely positive” Lyme disease test from November of 2009 that was in my medical records I was asked to collect prior to my first appointment, left this doctor with zero doubt that I had Lyme disease. This was also the first time the results of my Lyme disease test from 2009 were discussed with me. 

Mid-December: During my return visit to the doctor to discuss my blood work I learned that in addition to treatment for Lyme disease I was going to be treated for 3 other tick-borne infections; Babesia, Bartonella and Mycoplasma.

Medication

Seventeen months and counting… my treatment shall remain on-going until I am symptom free. I have been on as many as seven antibiotics at one time. Currently I am on five.  I have been on up to 21 supplements per day; currently I am on about 18. I get blood work done every 8-10 weeks to make sure my organs are functioning properly, as well as other random tests that are important markers for my Lyme disease battle. My symptoms ebb and flow with antibiotic changes, dosage adjustments, physical exertion and bad food choices. 

That’s News to Me!

My current Lyme disease experience has been very different from my first experience in 1994 when I was treated for a month with IV antibiotics and told I was cured. Here are a few things I have learned since my chronic Lyme disease diagnosis:

• There is a deep division in the medical community over whether there is such a thing as “chronic Lyme disease” and there’s an ongoing debate over how to help/treat people who suffer from long-term effects of Lyme.
• Lyme Literate Doctor’s (LLMD): Due to the issues with the Lyme disease testing that I have documented throughout my blog it is sometimes necessary to seek out a physician with the expertise to consider clinical symptoms in addition to blood tests to get treatment for Lyme disease.
•  Insurance companies do not cover the majority of treatment provided by LLMD’s, because  LLMD's  treat their patients for a disease that is not acknowledged as a disease by the NIH, CDC, WHO, etc.
• Co-infections: I had no idea there were other tick-borne infections one could catch from deer-ticks until the day I was diagnosed with three of them.
• I had never heard of, let along experienced a Jarisch-Herxheimer Reaction (Herx), until two months into my treatment. I wish I was still in the dark about them. They are very unpleasant and of course do not come without controversy.
• Certain foods can effect illness and injury

About that testing

What is a barely positive Lyme disease test anyway? I don’t remember the explanation, but I will be sure to ask my doctor to explain it to me the next time I see him. Hey, cut me some slack, I was in bad shape the first couple of times I went to his office for my appointments.  

… Now back to the point of this post!

"Antiscience and ethical concerns associated with the advocacy of Lyme disease”; the article that I shared in my previous post was written from a point of view that I have trouble understanding since my life has totally been changed by chronic Lyme disease. The article reflects the degree of hostility toward chronic Lyme disease patients, the physicians who treat them, as well as the Lyme charities that were formed in order to support education and research on behalf of the patients. There are numerous Lyme disease non-profit organizations, some of them not as informed as others. The article says that they are all well-intentioned, but ignorant and ill-informed; that is not an accurate portrayal. Many of the charities have established medical and scientific advisory boards to advise their organization. Casting a wide net to discredit research on Lyme disease because some of it has been partially funded by Lyme disease charities is disturbing. These types of efforts have led some researchers to initially submit research studies and not list all of the funding sources because they find that when presenting findings to government officials or other scientists, there has been more interest in the funding sources than the actual research itself.

Previously I mentioned that a discussion regarding this article during the Lyme disease hearing on Capitol Hill that I attended led me to read it.  In the article the authors stated that the public’s health will be endangered “unless responsible physicians, scientists, government leaders, and the media firmly stand up for an evidence-based approach to this infection that is based on high-quality scientific studies.”  And now to paraphrase Congressman Smith's remarks regarding this statement from the hearing: In fact, this is exactly what the Lyme community wants; however, it will be necessary for the physicians, scientists, government leaders, and media to show good judgment – to evaluate the evidence to see if it is based on the best science and to scrutinize the studies and the critiques of those studies to determine whether they are of high quality. Scientists who represent both sides of the debate need to be able to speak without restriction about what their studies have found.  Government agencies need to show leadership and to forcefully say what is known and what is not known, based on the best available evidence. 

Within the last month I’ve experienced a minor set-back with one of my co-infections; I’ll get to that eventually in the coming weeks. In the meantime while I get treated for chronic Lyme disease, which is no picnic, I will continue to get frustrated by the Lyme disease debate. As the debate rages on the people who are suffering the most are the ones who can’t obtain diagnosis and treatment as their quality of life goes down hill, the doctors who are shunned from the medical community for believing in something that “defies science”,  and people like me who finally got diagnosed and are constantly being bombarded with negativity surrounding their treatment.