The challenge of dealing with the struggles of healing from Lyme Disease & Babesia and its pervasive impacts on the health of my body and brain and the associated impacts on my life and work is what got me into writing a blog in the first place so it’s time for an update. Writing gave me a way to process through the difficulties and a way to chart my progress in the middle of a fight for my health when it was often hard to tell if I was moving forward. I am night and day better than when I started and had difficulty walking around the block, intense pain, deep fatigue and numerous neurological symptoms such as memory loss and burning & tingling in my toes and fingers but I am still working toward returning to my pre-Lyme state of health 26 months into treatment after my initial two-week course of antibiotic treatment failed. I am done being angry at my primary care providers who prescribed that treatment. They were only doing what they were trained to do. I do hope that our treatment practices evolve to treat Lyme in an individualized manner so more people can be treated successfully rather than go through the hell that I did.
Move toward what you want, rather than fight what you don’t.
This approach to life of investing my energy in what I want makes a lot of sense to me and I am trying to apply this more and more to my Lyme Disease management so rather than being focused on trying to kill off all the “bad guys” through heavy-duty medication I am focusing more on helping my body to be strong so it can heal itself. Having two pre-existing auto-immune conditions, Hashimoto’s Thyroiditis & Lichen Sclerosus, increases the complexity of this approach since my immune system already causes my body to attack itself but it also ups the potential benefits. This complexity means paying attention to all the various pathways that can impair proper immune function such as toxic load from heavy metals, chemical exposure from food, body care & cleaning products and water, stress, sleep and emotions.
First of all, I am grateful that I continue to be pretty stable using herbal and other natural supports. (I did 18 months of antibiotics and have now been antibiotic free for 9 months. Yippee!) We continue to sort out what symptoms might be damage from the Lyme and Babesia and what might be ongoing, low-level infection. My ND is pleased with my progress overall, as am I, but we are adding in some additional natural treatments for some of the lingering neurological issues. We are continuing the heavy metal chelation treatment and still hoping it will stop the tinnitus which I have been experiencing for nearly two years straight. So far my cadmium levels have dropped down into the “acceptable” range (yay!) but I still have a ways to go for lead; 7 more cycles of treatment or another 14 weeks and I can test again. Here’s hoping the lead will be down, the tinnitus will stop and I can stop that treatment. It has been a long haul.
One of my first lines of defense is to eat as healthy as I can which includes avoiding things that piss off my immune system. Every bite of food I eat can either help me get better, or not. That means no gluten, dairy, sugar or alcohol as well as a host of other foods that I am sensitive to but more importantly it means putting good micro-nutrients and antioxidants in my body through organic fruits, vegetables, nuts, seeds, eggs and meats, healthy oils like coconut, safflower & grape seed. I favor lots of kale, cabbage, spinach, shiitake mushrooms, garlic, ginger, lemon, & brightly colored foods like beets, sweet potatoes & blueberries and include some fermented foods for gut/immune health. I have been including things like raw cocoa nibs, raw Spirulina, raw local honey and hemp seeds in my green smoothies primarily for the micro-nutrients and healthy fats & proteins and immune system support. Meats are the hardest since there are few choices for organic, antibiotic-free meats. Most are really expensive and unfortunately chicken is one of my food sensitivities so I need to keep that to a minimum. I keep hoping there will be more local farms with healthy meats in my area. I have found that I have added almost as many new foods to my diet as I have cut out, such as a variety of new grains and nut flours which are rather fun to cook with. Who knew there were so many options out there besides wheat?
I am also working on trying not to think about Lyme so much since much more is going right than going wrong. My doctor agrees that I would feel better mentally if I could do this and is on board with me reducing the frequency of charting my symptoms, something that was critical to do when I was really sick. It is harder to not think about than I thought it would be since I still take medication five times a day and still experience lingering symptoms almost every day. However, I think I’d feel better focusing on what is going right and what brings me joy rather than paying too much attention worrying about low-level symptoms and whether the Lyme is growing back. Biochemically what we think and feel floods our body with hormones and neurochemicals that effect our health plus I just don’t want Lyme to steal my happiness. On that note, I am intentionally saying “Yes!” to more things that bring me joy such as taking some art classes, getting out with friends, volunteering, etc.
Another positive change for me is I am getting sufficient sleep on a regular basis and reducing stress which my job change in August has allowed. It is a wonderful gift to be able to go to bed when I’m tired and get up when I’ve had enough sleep, something my old job often did not allow. I can feel my nervous system slowly unwinding as the weeks go by and think that the benefits from this change will continue to grow. Unfortunately my yoga and hiking has been on pause since November when my back began to act up but hopefully that will be a temporary thing. I have restarted acupuncture which I think is good for my immune system & nervous system overall.
I am going to add in Lion’s Mane mushrooms to see if it will help with the last lingering memory and language use problems that resulted from Lyme in the brain. (I want my old brain back!). Lion’s Mane has some early promising results in reducing plaques in Alzheimer’s. We are adding in P5P which is a B vitamin to see if it will reduce the nerve damage in my face and Immuplex for general immune/thyroid support. (Lyme is notorious for causing Bell’s palsy.) My ND wants to make sure the tingling numbish feeling I get in my cheek does not turn painful and grow from an annoyance into a problem. I am also adding back in Cryptolepis for 2-4 weeks since I have had an intense bout of night-time hot flashes for a couple of weeks followed by a return of drenching night sweats which had disappeared when we treated for Babesia. Better to nip it in the bud. I can tell it is working by the burning feeling I get in my toes and bottom of my feet after I take it. My ND reminds me if the neuro-symptoms increase we may have to add antibiotics back in for a few days a month something that I hope not to do. However if we do ever add them back in it would create the opportunity to do a urine PCR to check for the continued presence of Borrelia. (Essentially if you pee out dead Borrelia, then you still have it your system.) My ND also thinks that my hormone cycles aggravate the symptoms which is common in women. Too bad there isn’t some kind of menstrual cycle stopping rain dance or ceremony I could do. At 50 years old I would welcome an end to hormone fluctuations. Enough is enough!
So there you have it. Essentially I am holding my own and am feeling pretty optimistic about continuing to feel better.
For my fellow Lymies out there who are curious about my current treatment regimen, this is what I’m currently taking for herbs & supplements:
A-L Complete, Byron White (5 drops once a day away from everything else) – antimicrobial & immune support
Samento & Banderol (5 drops, 3 Xs day) – antimicrobial herbs that also help with symptom relief
Grapefruit Seed Extract (2 caps, 2 Xs day)
Crypotolepis – antimicrobial for Babesia – also used to treat malaria
P5P – for nerve damage
Memory Pro – 1 cap, 2Xs day– herbal blend to support brain health, also anti-inflammatory
Vitamin D3 – 1 drop a day – often low in those with Hashimotos and often low in those with Lyme
Immuplex – overall immune support
Lion’s Mane – 2 caps a day – for brain repair (here’s hoping!)
Captomer D – DMSA for chelating heavy metals – 2 caps, 3 Xs day 3 days on & 11 days off
Heavy Metals Support –2 caps, 2 Xs day – to prevent lose of certain minerals during chelation.
Naturethroid 1.75 grains – for thyroid
Adrenal tincture – for adrenal gland support & cortisol management