Ashley L. from New Hampshire (currently Arizona)
How long do you believe you have had Lyme/tick-borne illness?
My doctors truly believe I contracted Lyme in utero. I have had mysterious illnesses, hospitalizations, and symptoms my entire life. However, in July 2017 the Lyme hit hard!
How long did it take you to get a diagnosis?
My entire life, so 27 years. I was finally diagnosed on August 23rd 2016.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Absolutely, doesn’t everyone? (Lyme humor). I have been seen by them all: neurologists, rheumatologists, gastroenterologists, doctors of osteopathic medicine, dermatologists, surgeons and neurosurgeons, dentists, oral surgeons, pain management doctors, naturopaths, and the list goes on and on!
Were you diagnosed with anything else before Lyme? If so, what?
Degenerative disc disease, anxiety and depression. Many doctors put me in the category of Multiple Sclerosis several times however I was never officially diagnosed with MS because, well, I DON’T have MS! Every specialist would circle the idea of lupus and rheumatoid arthritis and various other autoimmune disorders. They were all sooooo close, but once they ruled out their expected diagnosis they prescribed me a medication, a steroid cream or probiotic, and sent me on my way with no real answers or explanations.
Anything else you would like to share about trying to find a diagnosis:
First off, I want to share some words of wisdom: Do not give up! I was 2 weeks old when I started with chronic ear infections, which didn’t stop until I had my adenoids removed when I was 12 and I was left with 75% hearing damage in my right ear. At 2 years old I stopped walking and couldn’t feel my legs. My parents rushed me to Boston just to be told, “It must have been a weird virus, but she has high cholesterol.” Interestingly enough, now my cholesterol levels are through the roof as well!
This happened again when I was 12 years old - I lost feeling of my legs and couldn’t move them. This time, we shrugged it off as a “pinched nerve or something” once my leg function returned. I have had 5 back surgeries and several hospitalizations with random spinal fluid leaks - still no answers.
I hopped from specialist to specialist and it wasn’t until I started getting severely ill with joint pain and fatigue that I turned to a (now) good friend in my apartment building. Both she and her husband have Lyme Disease. She listened to my complaints and concerns for my future as an occupational therapist and she told me, “You have Lyme - I just know you do. You have to see my doctor!” I eventually saw her Lyme-literate naturopathic doctor and FINALLY received a diagnosis through IGeneX testing (which come to find out, is not the most current, evidence-based testing available, but at the time this was my best option).
I felt so relieved to finally have a name to this beast I have been up against my entire life. Here I was with a name to my disorder and a plan! If you have received a diagnosis, you understand this relief. If you haven’t been fortune enough to receive a diagnosis yet, don’t give up, fight for your health. I realized early on without your health, you don’t have anything (the money you saved up and your future dreams and plans can’t happen unless you are around to enjoy them). Keep fighting, from one fighter to another.
How long have you been treating Lyme for?
Officially since August 23rd 2017. Technically, a year or two prior because I had met my first naturopathic practitioner (she was a nurse practitioner) who was 99% sure I had Lyme Disease. I did not have the money at the time to pay the $250 for the blood test to be sent out to California - so we treated it with holistic tinctures and used the body’s meridians to find sources of weakness within the body. I did not go on any antibiotics at this time, as I was not as advanced as I was when I was seeking treatment this past August. I truly feel in my heart every practitioner has done the best they could do within their parameters; however, my hope for the future is that practitioners of all kinds are further educated and provided with the resources and support from the state in order to provide the best quality, evidence-based care. See, I work within the health field and I hear from doctors too often that, “Lyme Disease is such a buzz word right now and that it isn’t actually the epidemic people are making it out to be.” I refuse to accept this any longer. We exist and we matter, our lives matter.
Do you have any coinfections? If so, which ones?
My main doctor is pretty confident he know which co-infections I have but is waiting to review the results with me prior to providing me with an official diagnosis until has done his due-diligence running diagnostic testing. Here at the clinic where I am currently treating, they stress the importance of a proper diagnosis in order to assure the best possible treatment and best outcomes. Soon they will be offering a new diagnostic test utilizing urinalysis, so I will be one of the first patients offered the newest diagnostic testing to identify co-infections at a more specific level. I’m very excited!
What types of treatments have you tried?
Oral antibiotics (Bactrim and Azithromycin) and various holistic tinctures and oral medications to support my other body systems. However, I still ended up with gastritis from the oral antibiotics. After starting the Bicillin shots I started severely herxing. I had a PICC line placed to start the process to receive IV antibiotics at home however because I could not get a positive diagnosis on the CDC-approved Elisa or Western Blot (I had a “determinate” which many patients with Lyme receive). New Hampshire is one of the hardest hit states with some of the fewest resources. As most of you know, VERY little it covered by insurance; therefore many cannot afford to seek treatment (I was unable for several years until I started working and saved).
My boyfriend and my family decided we needed to seek other options outside our state as they saw me declining rapidly from one doctor’s appointment to the next and was being turned down from one emergency room to the next (even after waiting 6 hours in the ER with significant chest and upper abdominal pain and an abnormal EKG! It was shrugged off as “most likely Lyme-related” and I was sent to follow-up with my principal care provider). Thankfully, I was fortunate to be accepted by a doctor of osteopathic medicine with an already-full caseload who was more versed in Lyme Disease than your average principal care provider. However, these practitioners are too far and in-between and once you find one, they are typically booking months in advance.
I now have a port in my chest instead of the PICC line because my arm became severely infected with contact dermatitis! Currently, at the clinic where I am treating, I am receiving antibiotics: Rocephin and Doxycycline via IV, along with various other infusions to help avoid fungal infections (Candida), and fight heavy metals, and boost my immune system, etc. They also have infrared saunas and ozone therapy and use something called a Bemer to help promote oxygenation, circulation, and healing. I have A LOT of homework as well to assure adequate detoxing (i.e. coffee enemas, colon hydrotherapy/colonics, IV electrolytes, medications at home, castor oil pack on my liver, Epsom salt baths, etc.) — you get the gist! It’s a full time job!!
List up to 5 of your biggest (past or current) symptoms:
- PAIN (joint, bone, muscle, nerve, migraines, even skin sensitivities)
- Fatigue (Lyme with re-activated Epstein-Barr or “mono” like a lot of patients)
- Seizures (or pseudo-seizures, we are not 100% sure yet)
- Brain fog, memory deficits
- Neurolyme – inability to walk, speech is affected, and tremors
What is the biggest way that Lyme has affected your life?
I am unable to walk, shower myself, dress myself, and sometimes I am unable to speak in full, fluid sentences. However, I like to look at what opportunities this has opened up for me. For example, I have the opportunity to heal and help others like me through occupational therapy (in my opinion, the best job in the world, but I could be a little biased). It has opened my eyes to the beauty of life, what a gift it truly is, no matter how young you may be - it’s never a guarantee. Lastly, since Eddie, my family and I have had to get this far by selling our personal items (cars, apartment items, etc), so many caring friends and family and people we don’t even know have donated and prayed for us — it has made me believe in the power of humanity, that there IS good in this world, despite all the sad and scary things we see on the news every single day. I thank those who have helped us get this far and continue to help us get the treatment I so desperately need! Thank you <3
What do you wish people knew about Lyme Disease?
Please start by watching the documentary “Under Our Skin.” Although it was filmed in 2009, I believe, the information is still very valid. But don’t stop here! Research, research, research… and don’t just stop at the CDC (yes include it absolutely but don’t stop here!)
Ask questions, us Lymies LOVE when people want to hear our stories!!
Doctors: LISTEN to your patients, like actually HEAR them. And do your best to BELIEVE them, TRUST in them that they do not want to live their life this way. To be told this much pain and suffering could be caused by yourself (“in your head”) is the most devastating and belittling statement you could ever be told. In advance, thank you — from hundreds of thousands of patients.
Ask your fellow Lyme-Literate practitioners (can be found on http://www.ilads.org/ and often through word-of-mouth)
Friends and Family: listen to podcasts like LymeVoice to help understand this disease and to seek support from others struggling with supporting family member’s and friend’s with Lyme Disease or various other chronic conditions (i.e. Fibromyalgia, Chronic Fatigue Syndrome, chronic pain in general, MS, and the list goes on).
Look into the multiple benefits of medical marijuana (cannabis) and CBD oil for pain control and neurological Lyme symptoms.
Any advice for someone newly diagnosed with Lyme?
Yes! I’m told, “It get’s better.” Tell yourself every single day, “when I get better” NOT “if I get better.”
Allow yourself to feel whatever emotion it needs to. Allow your body, mind, and soul to just be — be wherever it’s at in each moment.
LEAN on your supports, if you don’t have any…find some (i.e. support groups online and social media outlets such as Instagram — feel free to contact me on there @Lymekhaleesi anytime!!)
Journal, record, or video. Any form you can physically and mentally handle to record your experience. You will be surprised how much you will not remember.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
I love to eat! Haha I love food, so this new ketogenic diet is going to be interesting!
I enjoy spending time with my boyfriend if we can get a second away from treatment, fundraising, spreading awareness and my story, and finding a place to live while we are here for 3 months.
I look forward to my first hike and run and bike ride, maybe even a marathon! I also look forward to trying yoga and starting equine therapy (horse riding).
I also plan to watch some of the wild horses left in AZ. I am learning how to meditate, as I have been told by many wise people that this is a game changer for many people to remain balanced.
I actually enjoy spreading the awareness of Lyme Disease and sharing my story with others (clearly!) haha
You may find more about Ashely in the following ways:
Twitter (I have NO IDEA HOW TO WORK THIS so please remain patient and any advice is welcomed! Haha): @AshleyL43715738
My YouTube video: https://youtu.be/i-hMuSxwyFY
My YouCaring Fundraiser: https://www.youcaring.com/ashleylynch-1017686