Further Down the Lyme Road

wristHi friends. I am the queen of false starts…gaining momentum and then pushing this little blog to the side when life gets crazy. Or when I fall and break my wrist and need surgery to screw it back together and am handicapped by one-handed typing and type for a living and can’t bring myself to type during my free time.

But then again, I do have frigging Lyme, which is probably the real reason for my inconsistency.

ANYWAY. This post may be super boring if you don’t have Lyme or you hate posts with lots and lots of links. But I owe you an update.

In July I shared a bit about the detour we were taking with Lyme treatment, going off the beaten path to try new (and alternative) therapy for the illness that has torn through our family. Three months later we can say that we are making progress and gaining confidence that this detour is a permanent route. I threw a lot of information at you in this post,  but I am going to try to offer a simplified explanation of what we have found to be helpful. When we adopted this new protocol, things began to get dramatically better.

We continue to read, research, and interview practitioners as we seek to understand the complicated conundrum that Lyme presents. We were recently in the office of a new, local LLMD (yes, local to Charlottesville!) and she affirmed our recent epiphany that healing is a “mind, body, spirit” endeavor.  The descent into full-blown, chronic Lyme most likely did not happen overnight, and is probably the result of inflammation, diet, genetics, or circumstances. And, of course, ticks. You could have Lyme “simmering” below the surface only to have a virus, tragedy, or vaccination (yep) bring it to a boil. (And we are living proof of all three….one of us crashed after a vaccine, another after an infection, and a third after a difficult transition/season.)

 Important aside –  I am not anti-vax. I am pro-vaccine education. Many of us with Lyme have compromised immune systems and will not tolerate vaccinations as we did prior to the invasion. Our son ended up in the emergency room with cellulitis following a routine vaccine required for college. If we had only known what to expect afterwards. 

joyGetting back to the topic at hand, I want to share a simplified version of what we have done to gain traction with regards to overall healing.  I wish I could report that it was as simple as a medication change, but that is so NOT the case. In fact, we were probably harmed by staying too long within the confines of mainstream medicine and the overuse of antibiotics. What truly helped us turn the corner was the realization that healing requires a whole-life approach. (A mind, body, spirit approach.) I will break this down into concrete steps, but before I do I need to offer the requisite disclaimer: this is not prescriptive. It is highly individualized based on genetic testing, bloodwork, and lots of time with a Lyme practitioner. Do not adopt these thinking they are a panacea for your own battle with Lyme, because it is just that: YOUR battle, but rather an overview of the holistic approach that is finally working for us.

  • First, we underwent genetic testing. Your unique genetic makeup determines how your body tolerates pesticides, mold,  gluten, dairy, medications, detox and more. It is so much easier to make changes when you understand your own genetics. This takes the guesswork out of an already-complicated process. We used Genesight, while others have used 23andMe or DNA Connexions.
  • Next, a consultation with our LLMD helped us map out a new dietary and supplement regimen using the genetic testing to inform our plan, which included:
    • A more alkaline diet to reduce inflammation, organic vegetables and fruit in season (due to pesticide intolerance), pasture raised eggs, chicken or beef, and NO seafood due to higher mercury levels. We also had to eliminate gluten and most dairy. Kale smoothie, anyone?
    • We added supplements of glutathione using Immunocal (denatured whey protein) to make up for the fact that two of us lack the gene that makes glutathione, an antioxidant that supports detoxification and promotes healing. In a non-Lymie person, the body produces and uses glutathione to help detox the liver, and break down foods with gluten and dairy. Lymies who don’t make glutathione need to take OUT the gluten and dairy and add in supplements to replace it. We also added NAC  (N-acetyl L Cysteine) because it plays nicely with the glutathione to promote healing and detox.
    • These changes were combined with supplements we were already taking: D3, Zinc, Vitamin B6 and 12, liposomal vitamin C, and probiotics.
  • We learned as much as we could about the role of detoxing and added in a more robust regimen of epsom salt baths, bentonite clay soaks, infrared sauna, and detox lemonade. We are lucky that a “salt spa” with infrared sauna has opened in our town.
  • We began a very tailored herbal protocol. This is so individualized, and must be done under the watchful eye of a LLMD. There are many herbal protocols in the Lyme world (Vital PlanByron White, Cowden, Buhner, Klinghardt.  to name a few). The herbal therapy has to be done EXACTLY right, at the same time of day, and also requires the above dietary and lifestyle changes in order to be effective. Let me repeat: Do not try this on your own!
  • We embraced meditation. Meditation is gaining respect in the Lyme community for its role in calming the mind, reducing inflammation, sparking the production of serotonin and dopamine, aiding in brain plasticity, reducing emotional lability, helping with sleep, increasing pain tolerance, do I really need to keep going? I’m absolutely NOT KIDDING: some of our greatest leaps in recovery came after sessions of guided meditation.
  • And finally…the spirit part. Lyme is insidious in its assault, with cardiac, neurological, reproductive, hormonal and musculoskeletal repercussions. It can take months, or even years, to arrive at a diagnosis,  there are LOTS of setbacks, healing is hella expensive, and there are no uniform guidelines for treatment. And all of this happens while life marches on. It would be an understatement to say that it’s a spirit-killer, often robbing us of relationships due to isolation and broken commitments and even altering our perception of ourselves. (Now I’m sad.) It takes a dedicated effort to seek joy and to pursue healing, but it is absolutely crucial to the process. It’s also the last thing you feel like doing when you are in a healing crisis. A new Lyme treatment center in town is offering EMDR (Trauma Therapy) as part of the program, because they rarely see Lyme patients who DON’T have PTSD.

anneI doubt I’m alone when I say that I still hold this progress tentatively, afraid that the other shoe is going to drop, or that we will hit a wall and experience more setbacks. I know I need to work on that mindset (yet another theme for therapy) but it’s so easy to lapse into self-preservation mode as we climb out of the pit of chronic illness. We need to stop reading about joy and more actively chase it, we need to exhale and celebrate the progress. More later.

Until we meet again, God bless you all good.

Jenny

When I let go of having it perfect, I learned the joy of sharing life with the imperfect.” 
― Kara Tippetts, The Hardest Peace

 

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