In my last blog post back in November 2015 entitled Lyme Disease : Every Cloud has a silver lining, I shared that I had been diagnosed with Lyme Disease and that I had started a 6-12 month protocol to combat it with antibiotics. I haven’t blogged since then. My priorities have been myself, my daughter and my day job. I’m sure you appreciate and understand why!
As a mother or a caretaker, focusing on oneself is REALLY hard. Putting yourself before your child’s needs isn’t maternal, and it defies logic when you have a child under the age of 10. My daughter and I have navigated and adjusted how we have lived our lives during the past 6 months, and if anything we are closer as a result. There was an unspoken agreement that when I had the energy to be active with her I totally would, and she knew that spending our time together doing less active things for a few months may be the sacrifice we both had to make. I didn’t go into great detail with her how I felt, but I certainly shared “Mummy’s aching today”. So there were no trips at Spring Break this year, and Teacher Institute Days have been low key, with me working at home, while she’s had play dates or worked on science and craft projects. We have had none of the trips to the museums of past years, or bike rides… yet 😉
I’ve continued to work, though at times with reduced hours; and even at times when I really just wanted to curl up the fetal position and sob. With the support and understanding of executive management, I’ve been on conference calls with a bucket by my desk (thank heavens for the mute button!), and called into internal video conference calls wearing sunglasses to minimize the glare. I’ve had the support to stop business travel and I’ve worked 90% from home, only heading downtown for critical meetings. I invested in Travel Sickness Wrist Bands to ease the motion sickness when I needed to – and said bucket joined me in the car!
I found the strength to suck all the pain up when my daughter got home from school, so that she didn’t get scared or sad or fearful. Our evenings consisted of dinner, typically prepared in the crock-pot or pressure cooker for ease, homework, reading novels together, coloring, watching Animal Planet, doing jigsaws, and her favorite watching Winter & Hope two rescued dolphins via Live Webcams at Clearwater Marine Aquarium. When she goes to bed, I go to bed, and when I push that and try and stay up for some ME time, I quickly realize that SLEEP is THE best thing I can do for myself and that in itself is the ultimate ME time and that’s what’s pulled me through!
So let’s now talk about the medication… and my original commitment to a 6-12 month protocol using a combination of Antibiotics and Anti Parasitic drugs… It’s now 7 months since I committed to that protocol, so let me share with you that I did not and will not complete it… and to be transparent I deeply regret ever starting that particular RX combo as a pathway to better my health. Pretty strong statement right?… so let me explain why.
- I did NOT take medication so that I could feel worse than Lyme Disease and/or any of my ‘diagnosed’ conditions had ever made me feel in my lifetime – lying on a bathroom floor every other weekend after taking Anti parasitic drugs in a puddle of sweat with the room spinning was no way for me to live my life.
- These drugs reduced, and in some instances removed, my ability to be a fully functioning parent and working mother –and, let’s face it, human being. The protocol required me to time taking the Anti Parasitic Drugs ONLY when my daughter was with her Dad, which unfortunately was a timing that couldn’t be relied upon. I was a fully functioning active parent BEFORE I took these drugs, so WHY would I take something that impacted my work life balance so dramatically?
- Multiple Articles and research I carried out, including verbal confirmation from other Lyme disease sufferers, said and clarified that dialing in the diet was KEY to regaining health. I already follow the Autoimmune Protocol template, and even coach it. Before the drugs I was feeling 80-90% better than I did when I was taking them… so, why did I need to take these drugs?
- My gut health was deteriorating rapidly. I have piled on weight. I was experiencing skin and digestive issues, not to mention my teeth were turning grey! My body was NOT liking or reacting well to these meds, and while I told to expect herxing and that it could be brutal, I do not believe that I needed to feel this way. I knew there had to be a better solution.
- Knowing that the drugs I was taking, and that were covered by my insurance, contained fillers that brought gluten, corn and other delights back into my system, I had decided paying out of pocket for compounded drugs from a specialized pharmacist was worth the cost. Some $600 per month was not viable long term.
- My cravings for sugar and frozen foods like frozen yogurt/ice cream/sorbet were off the charts! And my ability to say ‘no’ was weakening by the day… (I’m going through a tough time, its ok to have some… right… yes/no/maybe was a constant conversation I had in my head)
- Last but not least, as a single mum with no close family or wide net village to support me (though with amazing friends), I simply could not stick out the extreme fallout of taking those drugs.
So. I was at my god son’s first birthday, sitting gingerly in a chair, having a major issue with the sound and the excessive movement in the room, when a friend of a friend shared with me that her neighbor had Lyme disease and was seeing this amazing doctor locally who treated her homeopathically. Within 15 minutes we were texting and before you knew it, I had an appointment with this doctor, a holistic practitioner with supplements lining her shelves and a little machine that I placed my hand on for 40 minutes to receive a 10 page report highlighting in hues of Green, Yellow and Red the severity of the inflammation in my body.
I had not told this doctor I had Lyme, or my health history to date. I had not told this doctor about a very stressful experience I was also going through in my personal life at the time. But this machine… it… it had picked it all up! There were all my issues listed in various hues of severity, spewing out of a printer. I was immediately skeptical, yet at the same time intrigued that this doctor had a machine that was psychic… seriously, there were things this machine knew about my emotions that I had shared with NOBODY! It also picked up Lyme and Co-infections and presented a homeopathic pathway. All my training told me to run and run fast. However I stayed and I listened to the doctor’s explanation of the results. She explained to me that my body wasn’t able to detoxify the fallout from the anti-parasitic drugs that that the machine picked up I was taking (I hadn’t told it or her). That my MTHR gene (also picked by said machine) and other co-infections was limiting my body’s ability to eliminate the fallout of the anti-parasitic drugs, and as a result my body was sitting there like a coffee filter… that hadn’t been changed in months, and before I went into toxic overload we needed to kick start and support my detoxification pathways. Otherwise I was just going to get sicker and sicker and sicker… THAT MADE SO MUCH SENSE TO ME, and I’ve still no idea if the machine is a gimmick or not, and I often look at the report and think “crap” that’s creepy – but it’s true what it reported my body was struggling to detox.
So since January I’ve been taking methylation support ONLY, no anti biotics, no anti parasitic drugs and plenty of probiotics. Just recently I’ve added magnesium back into my diet, after recognizing that when I take it, those sugar cravings are reduced to merely a whisper instead of demand. Of course, I continue to follow the Autoimmune Protocol as I honestly believe at the core of this, FOOD is really what matters.
I’m sharing this update with you because I want to highlight three things.
- Any doctor needs to look at you holistically and get a full panel of tests including Methylation, Liver, Kidney & Spleen health BEFORE putting you on a heavy hitting protocol, its important to know what detoxification your body can cope with while herxing is part & parcel of an antibiotic protocol with effective detoxification management it should not cripple you mentally or emotionally in the process!
- Do not take an overly aggressive pathway. Your body can only cope with so much. As eager as you are to get better, give your body time to adjust and give it breaks from aggressive protocols.
- Change your diet – I believe and know in my heart I would not who I am today without AIP, while I know the medication was necessary, if you aren’t already following an Anti-Inflammatory diet then I recommend doing so before you start any doctor prescribed protocol .
I will continue to update you, and blog if I continue to feel able. I’m certainly not back to the health I had back in November, but if I can put fingers to keyboard I’ll be here, sharing my journey in the hope that you may gain support and know that you aren’t ever alone.