Living With Lyme

Living With Lyme

Disclaimer:  I am not giving medical advice on this blog.  I am not a M.D. nor am I an expert in Lyme Disease, Chronic Lyme, or co-infections.  This information is simply a response to many requests to share MY STORY related to my experience with Lyme disease.  Please see a doctor for medical advice and more importantly, read as much as you can to form your own opinion about Lyme and Lyme treatment.  Be your own health advocate...go with your gut instinct...and never give up.

Resources- A list of resources that I find helpful

Under Our Skin- A Documentary About Chronic Lyme- Be prepared with tissues.

A List Of My Symptoms- The symptoms I experienced over the two years it took to get a correct diagnosis

Articles I have found helpful-

Chronic Lyme Disease- A New Era of Ignorance

Doctor's I've Seen:
~Family doctor- treated for "sinus infections" and then sent to other specialists
~Ophthalmologist-  for floaters and vision changes
~Neuro-Ophthalmologist (GBMC)- for vision changes, headaches, pituitary microadenoma
~Neurologist (Johns Hopkins)- Headaches, vision changes, pituitary microadenoma
~Rheumatologist- Was diagnosed with "Unclassified Connective Tissue Disorder" and was under watch for Lupus.  Wanted to put me on chemotherapy.  I said, "Hell no."
~ENT- sore throats, headaches, eye and ear sensitivity (had sinus surgery to fix the problem but it never fixed it.)
~ Endocrinologist (Johns Hopkins)- pituitary microadenoma
~Gastroenterologist- stomach pain, nausea- tested for celiac disease and treated for suspected lactose intolerance
~Allergist- sinus trouble/headaches; high eosinophiles (a type of White Blood Cell)
~GYN- removal of IUD for suspicion of trace hormones causing health problems including headaches.
~Dentist- dental pain
~Spinal Orthopedist- back pain
~Chiropractor- back pain, joint pain (has been a wonderful resource for me and I continue to see him)
~Holistic LLMD (Lyme Literate Medical Doctor)- FINALLY DIAGNOSED ME!
~Many emergency room doctors in two states for several hospitalizations over 2 years- spinal tap;
~Many radiology centers for x-rays, MRIs, CAT Scans,
~Ambulatory Surgical Centers for Steroid back injections, sinus surgery
~Countless Lab visits for bloodwork (most which came back "normal")
And possibly more...

Emergency Hospitilazations-
~New York City pre-diagnosis- level 10 headache with partial facial paralysis (spinal tap, CAT Scan) (released without a diagnosis)

~Baltimore pre-diagnosis- rash; high eosinophiles; fever; dehydration; headache (released without a diagnosis)

~Baltimore pre-diagnosis- severe vomiting, dehydration, passed out, convulsions, increased reaction to alcohol (released and told it was from having cold medicine and 2 drinks).

~Baltimore post-diagnosis- severe dehydration caused by vomiting which resulted in increased heart rate and low blood pressure (told I was a Chronic Lyme patient and they completely ignored me...released once my vomiting was stopped, and had IV fluids to stabilize my heart rate and blood pressure)

Tests that helped diagnose me:
Western Blot for Lymefrom IGenX Labs- Positive
Bartonella test from IGenX Labs- Positive
Ehrlichea test- Positive
Babesia Test- Inconclusive but considered by LLMD positive due to symptoms
Burrascano Symptom Checklist
(Other tests were preformed to RULE OUT autoimmune disorders, etc)

~I am currently on a regimen of three antibiotics, one that also has anti-parisitic properties (I will not specify what they are as I don't want to be perceived as giving medical advice.)

~I am taking natural herbal supplements to help with various issues including adrenal fatigue, heart support, immune support, brain support, anti-virals, and natural detoxing agents.

~I am taking multi-strain probiotics in high does to help replace the good bacteria in my gut that the antibiotics destroy.

~A low dose immune system support medication to help repair my destroyed immune system.

~Plenty of rest and help repair my body and the many systems that were destroyed by Lyme.

~A strict dairy free, gluten free, caffeine free, processed sugar free diet focusing on whole foods.  Many ask why this is and it is for two reasons.  First, dairy and gluten both cause an inflammatory response in our bodies.  In the effort to reduce as much inflammation in my system as possible, I need to avoid these foods.  Secondly, it is so important to have correct nutrition to give my body the vitamins and minerals it needs to repair itself.  Fresh, whole foods including fruits, vegetables, lean meats, beans, legumes, non-gluten grains such as whole grain brown rice, coconut milk and/or almond milk are the staples of my current diet.

~Daily epsom salt baths to soothe the pain of Lyme but also to help my body detox through my pores.

~Regular visits to my Lyme Literate Doctor (LLMD) to carefully monitor my progress and needs based on blood tests, and symptoms.


  1. Thank you so much for sharing your story. You are so strong and brave and such a fighter. You inspire me. I have not seen as many doctors as you have but many. I am now seeing Dr. Jemsek (in Under Your Skin) in DC about 4 times a year. I am being treated for babesia, bartonella, others I don't know about, as well as lyme. Being in treatment so long is discouraging. I have not driven or been able to work since 2013. I have such distorted vision when outside and such fatigue and pain and cognitive issues that make even the smallest task or conversation so very hard. My brain is totally infected and my doc didn't even say I would get to remission...tho that is what they are hoping for. These last few months have been hard. My symptoms are like a roller coaster. But I know you understand all of that. Tina Lacey was my college roommate and a dear friend.

    1. Hi Mary! Thank you for your very kind comment. I don't feel very strong and brave, but I do try to use my big mouth, my art, and my blog to reach others like us who struggle with this terrible disease. I am so thrilled you found me through the Lacey family and am truly grateful for them connecting us. Hang in there- you are a warrior so keep fighting!


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