We’re about 5 months into our Healing Lyme journey with my son Charlie and we’ve come a long way. Our day-to-day is now a mix of life before Lyme (which is wonderful!), walking on eggshells when we can tell it’s needed, the occasional (a couple times a week) emotional outburst/panic attack), and a daily routine of supplements, OTC meds, herbals, and antibiotics. It still takes all of that to keep his inflammation at bay and his moods and progress stable. His OCD is still very present, though not debilitating like it was before. He still has food restrictions. I describe it like having food aversions when pregnant — how something you used to love now turns your stomach and the thought of it makes you ill. That is how he reacts to some (many) foods now. He can’t even look at them. I might make him something he ate the week prior and then the next week he looks at it and flies into a panic. It’s getting better, but it’s still there.
He was able to return to school after over two months being homebound. It hasn’t been seamless. He is tardy every day but we’ve gotten a note from our doctor and it is built into his 504 to allow for tardies or absence due to his illness. And he still asks to stay home most Mondays — but don’t we all feel that way? 😉 He works at a slower pace than his norm, math is harder due to his brain inflammation, and he gets tired. And now that we’re doing online learning at home due to COVID, we’re dealing with new struggles. But we’re doing our best. Sometimes his OCD causes him impulse control issues (this happened A LOT at onset before we went homebound) but mostly he has done great. I’d say we have him 75% back to his old personality. We haven’t retested any of his infection titers yet but will likely do that next month, and we’re considering doing some mold testing as well.
One of the hardest parts of healing Lyme has been learning the healing process. There is so much more to it than taking an antibiotic. For people with chronic stealth infections like Lyme and mycoplasma (Charlie has both) the infection can hide and be hard to kill. Lyme is a spirochete and it can burrow itself into just about every area in the body: joints, liver, brain, heart, etc. Many of these bacterial infections also exist in a biofilm, which helps it evade the immune system. Also, when you do kill the infection you need to be able to detox that from your body or it can also make you feel really sick (this is called a herxheimer reaction, or herxing.) Herxing is a sign that things are dying or being released from their hiding places into the body. When the organs that detox can’t keep up your body releases cytokines that cause a lot of unpleasant symptoms (both physical and emotional). What the body couldn’t see before is now visible and the immune system goes into hyperdrive. And if you have autoimmune disease like PANS/PANDAS that can make things go even more haywire. This is why proper detox is so important.
Your body’s natural detox system does a great job under normal circumstances, but when you have chronic illness your detox pathways often need a little assistance.Two big ways your body detoxes is through sweat and stool. Since kids with Lyme (and most people with chronic illness in general) often aren’t feeling up to working up a sweat, this one can be tough. We do epsom salt baths that help work up a bit of a sweat. Many people do infrared saunas as well (we haven’t tried this). It’s also important to make sure there are 1-2 bowel movements daily — we push water, foods high in fiber, and keep an eye on stooling. When we notice a backup, I make a “poop smoothie” with aloe vera juice, senna tea (smooth move), prune or apple juice, magnesium citrate, or a combination. We NEVER give Miralax (I shared why here).
Another tool that has been huge for aiding our detoxing is the IonCleanse foot bath. Our LLMD has one at their office and we tried it a few times there and I saw such a difference in Charlie. He was more relaxed after using it, was sleeping better, was having more regular BMs, and his mood seemed to improve. The 1-2 days following his foot baths were always better. I reached out to A Major Difference to see if they would be willing to send us a machine to continue testing so I could see if it was a tool that worked for us with continued use and in combination with our treatment plan. I wanted to be able to see how it worked for us before I shared much about it or recommended it to other PANS/PANDAS families. We’ve now been using it three times a week for over two months and I feel like it has made a huge difference for us. I have also used it on myself and find myself more relaxed and sometimes tired (I use it before bed and sleep better).
Let me just say that before Charlie got sick I would never have imagined that alternative treatments and therapies would be something that I would be doing, let alone recommending. But honestly, when traditional medicine and doctors failed us by not believing me (and even gaslighting me) and dismissing our positive test results, I became more open to other avenues of treatment. Because honestly, they were my only avenues. Had I done what the infectious disease specialist at Children’s hospital advised, I would have gone back to psych (which we had already done) and never treated Charlie’s Lyme. I can’t imagine where we would be now or years down the road if I had listened to that terrible advice. With that being said, when we first started using our foot bath and I shared about it on Instagram I had more than a few people commenting negatively and skeptically. And I get it. But seeing is believing, and I have seen such wonderful positive changes and improvements after using ours. On the nights that Charlie does a foot bath before bed, he has his best nights of sleep following — he did one last night and slept 15 hours! I don’t think he moved all night, honestly. And when these kids are trying to heal from these awful stealth infections and brain encephalitis, sleep is so important.
The company explains so much better than I can how the IonCleanse by AMD works, so I would advise you to do your research and read more about it here. But I am always happy to answer questions. Getting one is an investment, but when you have a kid with PANS/PANDAS and Lyme you already know that everything that goes into their treatment is expensive, and all you want to know is “will it work?” This has worked well for us so far. I’ve heard of people with other autoimmune conditions, ASD, other behavioral disorders and developmental disorders, as well as other things like heavy metal or mold toxicity benefitting from this treatment as well. If you are on the fence about buying one but have questions, please feel free to reach out via email!
Do you have any other Lyme or PANS related questions I can answer? Or questions about the foot bath or other treatments we’ve tried? Don’t forget to read my other Lyme and PANS posts if you haven’t already. You can find them here.
And thank you again to A Major Difference who provided this foot bath for us to test out so we could see if it was a treatment that I could share and recommend to my fellow PANS/PANDAS and Lyme parents.