What You NEED To Know About Lyme Disease - BEFORE It Changes Your Life

Please help me welcome my good friend, Master Gardener and guest blogger, Linda Reeves, who's here today to share her story about her very personal journey with Lyme Disease.

Spring is on its way … in spite of the piles of snow!  With that comes the end of cabin fever and a return to the great outdoors.  Unfortunately, it also brings some health concerns we must pay attention to, one of them Lyme Disease.  Each spring, a few stories appear in the news to remind us about Lyme Disease and you probably think, as I once did, that you know everything you need to know about it. Unfortunately, after 16 grueling months of being sick and unable to walk, I was diagnosed with Lyme Disease the end of June 2017.  And I quickly found out how little I knew about it.   I’m writing to tell you my personal experience with the disease and share what I have learned since my diagnosis.  I can’t erase the nightmare I’ve lived through, but I am now on a mission to educate others about this disease and hopefully give a purpose to my experience.  My intention is not to frighten people but to share my new knowledge and impress upon others the seriousness of the disease – and to help fix the many problems associated with it!

Lyme Disease is caused by the transmission of bacteria from the bite of a tick.  The bacteria can live in the body for a long time before causing symptoms.  Initial symptoms can be so mild that you may not think to visit a doctor, as in my case.  The bulls-eye rash, which I’m sure many of you have been told to look for, only occurs in approximately 30% of cases.  And most people, including myself, never even see the tick that caused the infection.  Ticks carry other bacteria in addition to the type that causes Lyme and can cause multiple infections with one bite, making treatment extremely complicated.

Lyme Disease is a very personal journey.  It affects each person differently, depending on how soon a diagnosis is made, which system in the body it affects, which strain of the bacteria causes the infection, and whether there are also co-infections such as Babesia or Anaplasmosis.  Lyme Disease can cause neurological, psychological, cardiac, hearing and vision problems, as well as arthritis.   In my case, it attacked my central nervous system, in addition to causing a variety of seemingly unrelated changes in my health.  

Testing for the disease poses another set of challenges.  Not all ticks carry Lyme, but if you are bitten by a tick you need to be tested.  Be aware, however, that the testing is accurate only 30-50% of the time so it can require more than one test to diagnose, as in my case.  Unfortunately, neither I nor my doctor knew that in 2016, and after one test came back negative I was declared Lyme-free.  Yet, after numerous doctor visits, no one could figure out why I couldn’t walk or do much of anything.  According to the Global Lyme Alliance, it takes, on average, 5 doctor visits and two years to receive a Lyme diagnosis.  In the meantime, the bacteria can cause a multitude of problems.  Lyme Disease and its co-infections can cause many symptoms that mimic other diseases, such as MS, Fibromyalgia and Chronic Fatigue.  If you experience unusual symptoms that have no apparent cause, you need to pursue the possibility of Lyme Disease even if you have never seen a tick.  You need to trust yourself – if you think something is wrong, pursue it!   Many doctors do not understand the varied symptoms Lyme presents.   During my many doctor visits, I was yelled at, scoffed at, and completely dismissed.  Not one of them spent a minute trying to find a connection to all the things that were suddenly going wrong in a previously very healthy person.  The emotional toll that takes when no one knows why you are so sick is overwhelming.  Sadly, that is a very common story with Lyme sufferers.  I got lucky with my last attempt to find an answer, but we should not have to depend on luck with a disease this severe in order to reclaim our health. 

There is no consensus on how long to treat with antibiotics once a patient tests positive, and symptoms can linger long after antibiotic treatment has ended.  And that is when you get another shock – that health insurance does not cover further treatment!  The bacteria can remain hidden in the body and cause problems down the road.  Presently, there is no cure.   Bottom line, the earlier you can be diagnosed and treated, the better recovery you will have.  This cannot be stressed enough.  Unfortunately, because of the unreliable testing we currently have, early diagnosis is not always possible.

Using tick repellants and wearing long pants and sleeves is very important, but you still must do a tick check after being outdoors.  A tick, in its nymph stage, is the size of a poppy seed, not easily detected on the body or in the hair.   Ticks are not affected by the cold weather.  They simply wait for the first warm days and then begin foraging for food.

I believe it is unconscionable that this disease is misdiagnosed by so many doctors, that the science doesn’t agree on how to treat it, that the testing is unreliable nearly 50% of the time, and that insurance companies refuse to cover treatment – yet Lyme is the #1 vector-borne disease and the #2 infectious disease in the US -- and is spreading worldwide.   Clinical trials are underway for a new blood test, and there is much hope that it will change how the medical world thinks about Lyme, but much more needs to be done.

One of the organizations I am now supporting is Lyme Action Network, a local non-profit organization that is working on research, education and advocacy on behalf of victims of Lyme.  They have very active Facebook (https://www.facebook.com/LymeActionNetwork/) and Web pages with a great deal of important information and updates about research and treatment.   Last year the organization testified before the New York State Senate Task Force on Lyme and Other Tick Borne Diseases, making the case for the need for more money to fund Lyme research and education.   Prof. Holly Ahern, a co-founder of Lyme Action Network, will be speaking at the Guilderland Town Hall on Tuesday, April 10 at 7pm.  Prof. Ahern is a leading researcher in Lyme Disease and speaks across the country about the complexities of the disease and the need for better testing and treatment.  Sen. George Amedore will also speak at the program about his work on the NYS Senate Lyme Task Force.  This will be a very important talk and a unique opportunity to hear both of these distinguished individuals speak on this topic.  The talk is free and open to the public.

One of the most effective things we can do to fix the myriad of problems associated with Lyme Disease is to contact or meet with our elected representatives.  Sen. Kirsten Gillibrand sponsored legislation in the US Senate that created the Federal Lyme and Tick Borne Diseases Working Group which held its first meeting in Washington last December.  She and her father both have Lyme Disease, so it’s a personal issue for her as well.  Sen. Gillibrand said we need to make our voices heard in order to make change happen.  Lyme Disease is nearing epidemic stages, or according to a newly published book Lyme Disease: The First Epidemic of Climate Change, we are already there.  It is up to us to educate our elected officials about its impact on our lives and to impress upon them the sense of urgency that we feel.  Everyone knows someone who has dealt with this very complicated and devastating disease.

Children are especially at risk for long-term health problems if not properly diagnosed and treated.  We all want kids to be able to roll in the grass and play in piles of leaves the way we did when we were young.  We need to make our voices heard!  

I have always been private about my health, but this time is different.  My intense passion for the great outdoors has been truly diminished by a tick I never saw that nearly put me in a wheelchair.   Will you please join me in bringing Lyme Disease to the attention of our elected officials and demand an end to this public health crisis?  I’m sure there are many of you who have been affected by this disease, either personally or through someone you know.  It’s time we take back our gardens and the beauty found in nature and end this scourge.  Thank you for doing what you can to be a part of this mission.   I also want to thank Gail for offering this platform to share my story.

"In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine..." Kenneth Liegner, MD.

-Linda Reeves

Thank you for reading this very important post.  If you have Lyme or know someone who does, please share this blog post using the links below.   To read more posts on this blog, check out my Directory  (http://www.lifeasiseeitphotography.net/p/directory.html).  You can also subscribe to receive new posts in your email by clicking here: Subscribe Here