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Our Family's Journey Through
Life, Lyme, & Homeschooling
"Above all, love each other deeply..." 1 Peter 4:8
What's Helped Our Family?
NOTE: This is the NUMBER ONE question that I'm asked by fellow Lyme fighters, so I feel the need to offer an answer here. However, please understand that each case of Lyme disease is unique, so treatments that work for one person might very well fail for another. The most we can do is SHARE our experiences and then SUPPORT each other along the journey toward better health.
#1 - We are not "cured."
There is currently no cure for many of the tick-borne diseases (including Lyme), but scientists are working tirelessly to find that elusive key to permanent relief! In the meantime, there are treatments to help folks manage their symptoms. Given enough time, resources, and trial-and-error attempts at treatment, many patients find "remission" to be the light at the end of the tunnel (remission being the absence of major symptoms); that said, staying in remission is a careful balancing act. Sickness, stress, and fatigue can result in major flares, so it's essential to avoid these whenever possible.
#2 - Everything has taken time and patience.
We are currently in our 6th year of treating/managing our tick-borne illnesses (Lyme, babesia, bartonella, and ehrlichia - all confirmed by laboratory testing). Discovering effective treatments has taken oodles of time (and oodles of patience!). Plus, we've learned that most of the treatments (the most effective ones, that is) have required months - and, in a few cases, YEARS - to work.
#3 - The road to recovery hasn't been cheap.
There are hundreds of articles online about the financial burden of Lyme disease, so I won't belabor the point. The bottom line is this: those who are just beginning their Lyme journeys should be prepared for some major expenses. Medications. IV antibiotics. Supplements. Special dietary requirements. Doctor appointments. Specialists. Physical therapy. Massage. Laboratory testing. Etc. The list goes on and on! I really don't want to discourage anyone, but I think it's best to be prepared. Knowing what to expect will *hopefully* help to lessen the sticker shock of this disease. Also, full disclosure here: our family has been incredibly blessed by generous parents who've covered many of our expenses. If you aren't surrounded by similar support, please consider looking into organizations which offer funds to those struggling with Lyme disease.
Alrighty, here we go...
These specific things
have helped our family:
#1 - IV Antibiotics
Intravenous antibiotics are controversial, but I have to say that IV ceftriaxone (Rocephin) worked for me. Within 48 hours of beginning the IV, I felt a dramatic decrease in pain and numbness, and I slept - without any type of sleep aid - for the first time in years! The pain, dizziness, headaches, heart palpitations, and tremors all improved greatly throughout the 5 months I received the Rocephin. Now, did any of those symptoms reappear after I stopped the IV treatment? Yep, some of them returned. BUT, those 5 months were glorious, and many of my symptoms never returned to their previous intensity. (I haven't needed a wheelchair since receiving the IV, and that's pretty amazing!)
#2 - Oral Antibiotics
I see one of the most "natural" doctors on the planet (he makes his own soap, y'all, and he utilizes natural remedies whenever possible; plus, his supply of herbs/tinctures/supplements is absurdly large), but even he admits that antibiotics are often necessary for the treatment of many tick-borne diseases. How did he come to this conclusion? Well, first of all, he has Lyme disease himself, so he knows what's worked and what hasn't worked for him personally. He's also a researcher, so he closely follows the latest research regarding effective treatments. And, so far, while many herbs/supplements/tinctures are helpful in the fight against Lyme, antibiotics are proving to be stronger weapons against the more dangerous bugs (Lyme, babesia duncanii, etc.). For our family, in particular, the Zithromax (azithromycin) plus Mepron and/or Coartem combination has been very effective. My children and I have all found relief from these meds.
#3 - Herbs/Tinctures/Supplements
Look into my cupboard and you'll find LOADS of supplements where you *should* find dishes instead. ;-) We are BIG believers in the power of natural medicine! Some of our favs: BioPure's Cocktail, NutraMedix's Quina, Woodland Essence's Cryptolepis, Marco Pharma's Crataegus (for heart palpitations), Byron White's A-Bab and A-Bart, and Standard Process's echinacea. We also take ReBoost Immune Support daily, as well as a rotating supply of additional immune boosters.
#4 - Epsom Salt Baths
Epsom salt baths *help* to take the edge off our pain for a few moments of the day. These baths do NOT eliminate the pain by any means (really, they just provide the slightest bit of relief... but every little bit of ease is greatly appreciated!). We love the lavender-infused epsom salts best! :-)
#5 - Physical Therapy
Many tick-borne diseases cause tremendous PAIN. Muscle pain. Joint pain. Nerve pain. And this constant, high-level pain alters your posture and your ability to walk normally. This is where therapy comes into play. A qualified, GENTLE physical therapist can (1) help to manage your pain, and (2) correct that "hunched-over-in-pain" posture. But you MUST find a qualified therapist... the best physical therapists we've found have all specialized in the management of multiple sclerosis issues. Just fyi.
#6 - Massage
Again, this CAN help folks to manage their pain, BUT sometimes a massage actually makes the pain considerably worse. Why does massage work sometimes and fail miserably at other times? I have no idea! For me personally (Meredith), I find that I cannot tolerate massage therapy during my major flares. On the "good days" however - when my symptoms are tolerable - I find that regular massage helps me to manage the pain.
#7 - Keto Diet
The so-called "Lyme diet" never worked for me (Meredith), but the keto diet has been AMAZING. Life-changing actually! Yes, the keto diet is incredibly strict (fewer than 20 carbs per day), but once you experience the dramatic improvement in symptoms, it's a piece of cake to adhere to the strict plan! My favorite keto recipe books are The Everyday Ketogenic Kitchen and Simply Keto. (Just google "keto and disease" or "keto and MS" to see evidence of the healing power of a keto diet. The results are INCREDIBLE!)
#8 - Managing (Avoiding!) Stress, Fatigue, & Illness
Managing stress, fatigue, and illness has become an art form in our house! We do everything possible to avoid stress and germs because we do NOT want to slide backward. Choosing to homeschool our kiddos has been a tremendous blessing in this respect. Homeschooling helps us to avoid the icky germs circulating through classrooms, and homeschooling also provides a more "relaxed" learning environment... there's no pressure to complete mounds of homework, and the kids are able to get as much sleep as their bodies need. Although we never thought we'd be the homeschooling type, we've discovered that we LOVE this lifestyle! :-)
#9 - Moving to Colorado
This one is extreme, we know, but truly - we are ALL able to function better in this low-humidity climate. There's a mountain of evidence to support the fact that lower humidity climates (with moderate temps) are better for the heart, and there's also a mountain of evidence to suggest that MS patients fare MUCH better in low-humidity environments (I, Meredith, have been diagnosed with MS, but this diagnosis is controversial in the lyme world since many lyme doctors believe that MS is actually lyme disease). In any case, all we know is that our family has benefitted from the move to CO. We can breathe better here. We have fewer headaches. We have less pain. We can walk better here. The list goes on and on. We are grateful!
#10 - Adjusting Our Expectations
This is huge, folks. Really. We no longer expect to be "cured" by the next treatment, the next doctor, the next anything. And this is not a woe-is-me attitude. I say this with all the joy in the world (ok, maybe not joy exactly, but definitely an abundance of peace). The fact is that a cure has not yet been discovered, but the scientists and researchers - especially those at Johns Hopkins - are working tirelessly to find one! In the meantime, it helps to celebrate any improvement in symptoms rather than bemoan the fact that we're not well. Progress is progress!
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In addition to adjusting our expectations of treatments, we've had to adjust a host of other expectations as well. For example:
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(1) We expect our plans to change frequently. We might take that long-planned vacation, but we might not. We might attend the big party, but we might not. None of our plans can be set in stone because we never know when a giant relapse will knock us down for a month. So we accept that ALL plans are subject to change, and we try our best to let everyone know that we're an unreliable bunch (and we're so sorry!!!).
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(2) We don't expect the average doctor to know much about tick-borne disease; in fact, many physicians still call it "Lymes" disease. Instead, we're always prepared to kindly, respectfully share our knowledge - as well as the latest scientific research - with any doctor who inquires about our illnesses. We've seen that most doctors are quick to acknowledge that medicine is a humbling profession in which much is still to be learned.
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(3) We no longer expect our bodies to do the same tasks with the same ease that we once enjoyed - but, really, isn't this true for nearly everyone who ages? Bodies change. Abilities wane. We ALL learn to adapt! For many of us with Lyme disease, stairs have become difficult on our swollen, tender knees... so we limit our trips to the second floor of the house and we use the elevator at the museum. Easy peasy! We've ditched the high-intensity workouts for low-key walks instead. Soups and cereals, which can be amusing messes with our shaky hands at the wheel, are always accompanied by an extra napkin (or 10!). Since buttons add 15 minutes to the getting-ready routine, pullovers have become a household staple. None of these changes are a big deal, but it helps newbies to know that some of these things might be on the horizon. Driving, for instance, is now a glorious luxury that's reserved for the good days (freedom!!!) - and that's perfectly okay. With every limitation comes a much, much greater appreciation for each and every thing we CAN do!
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(4) We don't expect others to understand the struggles associated with an "invisible" disease. People are going to say things like, "Well, you sure LOOK fine!" Rather than give everyone the full, behind-the-scenes scoop, we just smile and say, "Thanks!" because there's only so much energy in the tank, and we'd prefer to save it for the stuff that matters. ;-)
#11 - Making the Most of Our GOOD Days!
Speaking of stuff that matters, it's ESSENTIAL to celebrate the good days. As mentioned before, Lyme disease is not "cured." It's only put into remission by the careful management of symptoms, stress, fatigue, and germs. Hopefully, with the right treatments and coping strategies, these periods of remission will last a long, long time. That said, relapses (or "flares") are nearly inevitable. The best way to cope with those relapses? Celebrate the GOOD days between them! Our best advice to others dealing with Lyme disease is to LIVE YOUR LIVES (within reason, of course). Play with your kids. Go out with friends. Enjoy family vacations when you can do so. Trust us, celebrating (relishing!) the good days will provide a much-needed emotional boost after long periods in bed.