Betsy C. from New Hampshire
How long do you believe you have had Lyme/tick-borne illness?
How long did it take you to get a diagnosis?
16 years total after being bit as a child, but 3 years of persistent complaints to my primary care physician.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes, I was seen by my PCP every three months for approximately 3 years. I was sent to Cardiologists, Pulmonary Specialists, Neurologists, Rheumatologists, Gastrointestinal Specialists, ENT Specialists and was eventually told I needed to seek psychiatric evaluation.
Were you diagnosed with anything else before Lyme? If so, what?
Asthma, Syncope, Tachycardia, Respiratory Infections, Chronic Migraine, ADHD, Anxiety, Chronic Pain, Stress.
Anything else you would like to share about trying to find a diagnosis:
You are your own best advocate. Always obtain your own copies of testing - most Primary Care Physicians are only looking for a 'negative' or 'positive' result and are not fully looking over your results. This is especially true for Lyme Disease. I had a CDC negative test in 2010, so my PCP called me with a negative result. I spent 3 more years seeking specialists and returning to my PCP's office every 3 months to find a cause as to what was making me so ill. After testing CDC positive in 2013 and being seen by my first LLMD in 2014, he let me know I had Lyme specific bands present on my test from 2010. I would also recommend seeking a Lyme Literate MD (LLMD) if you suspect you may have Lyme and Co-infections. Standard CDC approved testing is reliably inaccurate, I highly recommend using a specialty lab such as Igenex. Lyme can imitate hundreds of diseases - if you feel you have been misdiagnosed, please continue to seek a proper diagnosis. It's your life - no one is going to fight harder for it than you. Never give up.
How long have you been treating Lyme for?
I have been treating Lyme and Bonus Diseases (aka co-infections) since 2013.
Do you have any coinfections? If so, which ones?
I have Babesia and Bartonella along with several viruses and conditions resulting from untreated Lyme and Co's.
What types of treatments have you tried?
I have done a lot of oral, intramuscular injection, and IV antibiotic therapy, along with herbals. I have been treating with IV antibiotics since July 2016 and have finally started to see improvement. I have also tried physical therapy, chiropractors and sought counseling to heal as well. I believe you need to take a holistic approach in treating Lyme and Co's, which by definition is characterized by the treatment of the whole person, taking into account mental and social factors, rather than just the physical symptoms of a disease.
List up to 5 of your biggest (past or current) symptoms:
Muscle, Bone and Joint Pain
What is the biggest way that Lyme has affected your life?
Lyme Disease has taken so much more than just my health. It has impacted every part of my life. It has literally put my life on hold for the last 4 years. It has destroyed relationships, forced me to leave a job that I loved and bankrupted not only me, but my family as well. I may be the one suffering from Lyme Disease, but it affects everyone that loves me as well.
What do you wish people knew about Lyme Disease?
Lyme Disease is not rare or hard to contract. It is a very controversial disease and the CDC does not recognize Chronic and/or Persistent Lyme Disease, allowing insurance companies to deny treatment beyond 28 days of antibiotic therapy. Anything beyond that is completely out-of-pocket. It's very difficult to find a Doctor willing to treat you beyond the CDC and IDSA's guidelines as well. Many physicians lose their medical licenses and ultimately have to close their practices due to treating patients with Chronic Lyme Disease. You have to fight for everything while you are fighting for your life.
Any advice for someone newly diagnosed with Lyme?
You need people who will be on your team, whether you are fighting or thriving. Reaching out to others that are experiencing similar circumstances helps greatly. I have honestly learned more from the Lyme community than any other available resource. I always recommend being treated and evaluated by a LLMD as soon as possible. If you broke your leg, you wouldn't go to an ENT Doctor, right? Lyme and Co's are very complex - you need an expert in the field.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
The truth is, I am always attending to my Lyme, but distractions are more than welcomed! I love to be outside, taking my dog for a walk (if I am able) is the highlight of my day. I was able to take on short hikes again this fall and it felt incredible to be out on the trails again.
To find out more about Betsy's journey, you may find her on Instagram as: @illest_optimist.
Betsy also wrote for Mighty Well - Check out her article here: http://blog.mighty-well.com/6-lessons-for-the-chronically-ill.