Becca D. from Kentucky
How long do you believe you have had Lyme/tick-borne illness?
How long did it take you to get a diagnosis?
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes, I saw many doctors. Some of this I’ll explain below because it relates to diagnoses and more, and the misdiagnoses I had from many types of doctors through the years, but as far as the types of doctors go in the active search that resulted in finally unearthing 20+ years of undiagnosed Lyme, I saw:
- Rheumatologists (3, one in NYC)
- Neurologists (one in town and one at the Cleveland Clinic)
- Assorted other specialists at the Cleveland Clinic who ran some intense tests.
- Infectious Disease doctor (traveled to NYC from KY)
- My family doctor
Were you diagnosed with anything else before Lyme? If so, what?
Prepare yourself. It wasn’t until we started hardcore investigating Lyme that we finally realized “no one person has this many conditions and problems wrong with her without there being an underlying cause.” I’m including both physical and mental health diagnoses, because Lyme has a very strong neuropsychiatric component in the way in manifests for me. So, diagnoses before Lyme:
- Juvenile Idiopathic Arthritis (formerly Juvenile Rheumatoid Arthritis)
- Anorexia Nervosa
- Obsessive-compulsive disorder
- Anxiety disorders (varied)
- Leaky Gut Syndrome
- Chronic Fatigue Syndrome
- Neurocardiogenic Syncope
- Postural Orthostatic Tachycardia Syndrome (POTS)
- Ehlers-Danlos Syndrome (EDS)
- Trigeminal Neuralgia
- Chronic Migraines
- Small Fiber Neuropathy
The rest of my diagnoses I have as a result of Lyme came about after I was diagnosed, like the Lyme-induced gastroparesis that developed last year, mast cell activation syndrome, and others.
Anything else you would like to share about trying to find a diagnosis:
It was hard. There’s no getting around that. And frustrating, because I felt like my body was spiraling out of my control, and QUICKLY. I had no answer as to why, nor a plan, other than “keep searching.” I finally started seeing a naturopath who I learned about from a long time family friend, who was going through almost exactly the same symptoms I was, with no answer, and had come across a story on TV about another friend locally who has Lyme, and once our family friend researched Lyme and the controversy surrounding it, she called us to fill us in, and by that point, we had no doubt it was the cause. It still took a few months to see this doctor, but he was able to help me get sorted out with supplements and off unneeded drugs that were masking symptoms, and he diagnosed me both clinically AND based on my Igenex testing (Western Blot and my CD57 alone were more than enough to confirm, even though the CDC wouldn’t be terribly impressed since one test didn’t meet their misguided standards. If we had given up three months into the search, or even six months into the search, or longer, I’d still be chained to symptom-masking medications and monthly IV infusions for my “JIA,” which suppressed my immune system and let the Lyme roam freely. My last IV infusion med for JIA is actually what finally caused years of Lyme hanging out just being pesky to turn into a debilitating illness, leaving me bedridden. Don’t stop searching.
How long have you been treating Lyme for?
Almost 5 years.
Do you have any coinfections? If so, which ones?
Yes, I have Bartonella, Babesia, Mycoplasma Pneumoniae, Chronic Active EBV, Systemic Strep, Staph. Aureus (in my gut, not the contagious MRSA).
What types of treatments have you tried?
- Homeopathic Series Therapies (DesBio)
- Oral antibiotics (short course of doxy had me dry heaving daily)
- Cowden Protocol
- UVBI (Ultraviolet Blood Irradiation)
- Ozone therapy
- Low Dose Naltrexone
- LDA/LDI injections
- Hyperbaric Oxygen Chamber
- Myers Cocktails
- Regular infusions of IV saline
- IV and oral glutathione as part of the PK protocol (along with phosphatidylcholine)
- Sphenopalatine Ganglion Nerve block (worst pain of my life)
- Many assorted daily supplements and meds, altered throughout the years
- Currently am on heavy duty IV antibiotics and antimalarials
- CBD oil (legal in all 50 states)
I’m sure I’ve forgotten at least one or two, but my brain fog isn’t helping me remember as I’m typing.
List up to 5 of your biggest (past or current) symptoms:
- Trigeminal neuralgia, type 2 (constant facial nerve pain on the right side: my eye, ear, jaw, that whole side of my face and head)
- Daily headaches for over 1900 consecutive days and counting (“brain trying to break out of skull headache)
- Psychiatric manifestations (i.e. when herxing, my OCD and anxiety will often flare majorly, which shows we’re killing those bugs in that area of my brain).
- Body temperature dysregulation and nightsweats with accompanying insomnia. I list these all as one because they have recently become much more pronounced and all hit at the same time…once we started directly attacking Babesia.
- Fatigue that prevents me from leaving bed most days and kicks in even when sitting upright instead of lying down.
What is the biggest way that Lyme has affected your life?
Honestly, I can’t think of a way in which Lyme HASN’T impacted my life. It’d be easy to say it took figure skating away from me, and much of my ability to write (I have an English degree, so not being able to think of words and communicate and/or write, which I love doing, is very hard to handle). It has greatly affected how my husband and I live our lives. I encourage him to go out and have some “him” time when he can, because otherwise he’s also stuck at home, tending to my needs as my caregiver, and that dynamic is hard, as well, because I want to be able to cook him dinner, go out with him, etc. The biggest way Lyme has affected my life is probably everything coming together and forming the perfect storm where I can’t be around anyone other than Roger without a heavy duty face mask on (mast cell issues get triggered by smells of detergent, shampoo, food, etc), and I have become quite a pro at finding activities to keep my brain active while bedridden.
I’d be remiss if I didn’t also mention this, though: Lyme has helped me learn to live in the present and not take anything for granted. That is one reason I vlog our everyday life - to capture the moments - regardless of how they are, and focus on choosing joy every day, despite how I’m feeling.
What do you wish people knew about Lyme Disease?
I wish people could truly understand how complex and serious it is WITHOUT having to get it themselves. Unfortunately, so many are simply unaware, or don’t take awareness and precautions seriously, and I long for that to change. I want others to know that Lyme needs to be diagnosed clinically if the signs are there, even with a negative test, because Lyme testing is notoriously horrible. Also, EVERY LYME PATIENT PRESENTS DIFFERENTLY. There are some symptoms that seem to be common across the board, like headaches, sensitivities, neck pain, nausea, fatigue, but even those commonly shared symptoms present differently in each person because our body chemistry is different and we’re all infected to a different degree. I want the government to actually hold the CDC and IDSA accountable for upholding all the research proving the existence of chronic Lyme and need for prolonged treatment. I want EVERYONE to know that LYME CAN BE PREVENTED IF YOU TAKE PRECAUTIONS. Sorry for the caps, I just can’t stress enough the importance of wearing repellent for any outdoor activity and doing frequent, thorough tick checks after you’ve been outside. The ticks in the nymph stage are extra good hiders, so check everywhere (including on your head/in your hair).
Any advice for someone newly diagnosed with Lyme?
Don’t assume your life is over. It’s easy to get overwhelmed, and that happens to everyone at one point or another (or more often than that), but take it one day at at time, make sure you have a doctor who is willing and able to treat you adequately for healing, and never stop advocating for yourself. If you aren’t strong enough to advocate like you need to, appoint a family member or friend to help you (you may be surprised at who’s willing to step up and help). Go with your gut (even those of us with leaky gut syndrome), and if a doctor or treatment feels wrong according to your instinctual intuition, don’t accept it as the only way. Keep fighting for your health and you will eventually find a doctor who is willing and able to help you. It can be difficult to find a good LLMD, and often requires a long trip depending on where you live, but once you’ve found the right doctor who can help you by using treatments to which you know your body responds well (which can mean herxing, or feeling worse before getting better).
Don’t ever give up. This world needs you.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
Oh goodness! Well, pre-Lyme, I loved figure skating as far as physical activities go. But as far as right now, when I’m not actively treating (or herxing from) Lyme and friends, one of my all-time favorite things to do is to write and record Christian rap lyrics. I also write lyrics about life with chronic illness, trying to encapsulate the struggle. There’s something about rap that is so pretty to me–maybe it’s my love of words and puzzles (by the way, I also love working jigsaw puzzled or crossword puzzles) and finding ways to put words together to a beat and flow with it…something just warms my heart and takes me out of any negativity I may be feeling at the time. I also enjoy comic books and all things geek-culture related, so those are great on days I’m able to focus and read.
Of course just enjoying life with my husband and beagle to the fullest extent we can on any given day is one thing I strive to do.
Lastly for this post, I’m not sure there’s a minute in my day where I don’t have music playing, unless I’m listening to an audiobook or something that would interfere with music. Music is healing for the soul!
You can find Becca online in several places!
Vlog/YouTube channel: Lyme is Lame https://www.youtube.com/channel/UCwy-zql0_sBtS9AFhmHR1VA