I am reprinting this chapter from our book, Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners because i think it might help you develop your own Christmas list and your own “how to survive the holiday” ideas . . .
Miscellaneous Aids During Treatment
I used to believe when I got sick, I could go to the doctor, get a prescription, take a pill, and I would be healed of whatever ailment had inhabited my body. I used to believe a holistic approach to health and well-being was a nice thought, a possible avenue, but something that mostly appealed to those “hippies” or those with a lot of money to throw around.
I used to believe organic food was another way to rip off the customer at the checkout line.
And then I got the Lyme Disease diagnosis. Dr. Mozayeni, with his credentials and research strengths, advised me at my second appointment to go “organic.” Some of my blood work came back showing I had significant levels of arsenic in my blood.
I completely understand the panic and desperation late stage cancer patients’ experience. I found myself willing to try almost anything to see if it would alleviate my pain and fatigue. I believe in traditional medicine and treatment protocols, but I also now believe a holistic approach is the only way to heal from a systemic, chronic disease.
We have gathered a list some patients have found helpful. What worked for some individuals may or may not work for you. And works now may not work six months from now. The point is, if you want to try it, go for it. People are constantly asking me for the “secrets” to healing. There are none. It’s a combination of ingredients unique to each patient.
These are items that were simply helpful during the healing process. They are listed alphabetically.
Attitude – A positive attitude is a critical element in my recovery. Even when I’m not feeling well, I know it will get better. At the most difficult and fatiguing phase of therapy, I mentioned to Dr. Mozayeni that I was trying to accept “the new normal” of what I thought my life would be like. I was depressed. He paused, and leaned forward a bit, lowering his voice.
“I need you to do something for me,” he said softly. I nodded my head.
“I need you to aim for no less than a complete cure,” he continued. “I know I can heal you, but I need you to believe that I can heal you.” Dr. Mozayeni’s words morphed me into the Energizer Bunny, giving me a new mantra to recite each day.
I printed out “I am aiming for no less than a complete cure” and taped the paper above my desk and on my bathroom mirror as a constant reminder of our ultimate goal. Attitude is key in healing.
Caster oil heat pack – One of the most significant possible benefits of castor oil is being a stimulant to the lymph system, improving lymphatic flow and increasing the activity of the cleansing of tissue.
Coconut oil –
Internal use benefits include:
1. cooking as a dairy free replacement to butter.
2. In green smoothies to boost metabolism and reduce inflammation
3. Oil pulling with coconut oil and a drop of oregano oil helps improve gum health
4. Use as a replacement for vegetable oils in any recipe
5. Mixed with catnip, rosemary, or mint essential oils as a natural bug repellent
6. When taken regularly, it can help fight candida
7. Can boost circulation and help those who often feel cold
8. Ingesting coconut oil daily can help with allergy symptoms
9. A tablespoon melted into a cup of warm tea can help soothe a sore throat
10. It can increase absorption of calcium and magnesium
11. Internally as part of the protocol to help re-mineralize teeth
12. To support healthy thyroid function
13. Its anti-inflammatory properties can help lessen arthritis
14. Coconut oil helps digestion and may fight intestinal parasites or yeast
15. A tablespoon taken before each meal can help improve digestion
16. Can be taken in warm ginger tea to sooth heartburn or nausea
External use benefits include:
1. Body lotion – helps relieve eczema, psoriasis and skin sensitivity
2. As a homemade deodorant
3. As eye-makeup remover
4. Topically to kill yeast infections
5. A tiny dab on the hands and then through hair will help relieve dry brittle hair
6. Rubbed on lips as a natural lip balm
7. On feet to fight athlete’s foot
8. Rub inside your nose to alleviate allergy symptoms
9. As a natural shave cream and aftershave lotion; again for those with skin sensitivities
10. Can be used to speed healing of fungal infections when taken internally and used externally
11. By itself or with baking soda as a naturally whitening toothpaste
CPAP and BiPAP machines for sleep apnea – This is one of those things that is good to rule out. The difference I felt after getting a BiPAP machine was remarkable. Part of my fatigue was definitely due to sleep apnea. I had the initial sleep study done AT HOME with a device you wear on your head (VERY SIMPLE). My sleep specialist told me the chronically ill patients he sees have a greater incidence of central sleep apnea rather than obstructive sleep apnea. Central sleep apnea occurs because your brain doesn’t send proper signals to the muscles that control your breathing. This condition is different from obstructive sleep apnea, in which you can’t breathe normally because of upper airway obstruction. Central sleep apnea is less common than obstructive sleep apnea. But I am told by Dr. Mozayeni, who has researched brain blood flow in sleep apnea, that the sleep apnea may be related to small vessel disease from inflammation. The inflammation in small vessels likely disrupts blood flow and injures the neurons of the brainstem controlling respiratory drive and muscle tone. This is likely the connection between chronic illness and sleep apnea – although the exact mechanism has yet to be proven and will likely be shown to be more complicated than we presently think.
Deep Breathing – When experiencing these vital revelations about the mind body connection, everything seemed exponentially magnified in intensity of light, sound, and touch. I felt like I was on a rocket ship with no space suit; trying to hang on for dear life. The intensity was at times overwhelming for me. I had some difficulty handling the intensity of emotions and thoughts coming through me. My EMDR therapist helped me calm my body and my breath. It slowed the information assimilation and processing for me. It’s called 478 breath – http://www.drweilonhealthyaging.com/hya/ecs/a/video.html
Detox baths – I don’t know how much they help medicinally, but it is a good time for me to meditate, relax, and soak up some positive energy. Make sure to rinse everything off after a detox bath!
Dry brushing – (www.iherb.com/Earth-Therapeutics-Massage-Brush/21480?at=0) Dry-brushing is supposed to help with the detoxing process. It helped my skin hypersensitivity and intense itching during herxes. Dry brushing exfoliates dead skin. Since dry skin brushing increases the circulation to the skin, it encourages your body’s natural discharge of wastes especially aiding drainage of your lymphatic system whose job it is to remove toxins from the blood and other vital tissues. Treating your skin in this way can also eliminate clogged pores and help your skin to absorb nutrients while aiding in proper excretion of metabolic wastes. Additionally, nerve endings in the skin also become stimulated and help to rejuvenate your nervous system.
eReader (Nook / Kindle / iPad) – at one point, I could not turn the pages of the book because my thumb joints were so painful. An electronic reader allows me to highlight, carry many books at once, and not have to turn pages in a box small enough to fit in my purse.
Grab Bars – My husband installed handicap grab bars for me in the bathroom. The shower was one of the most dangerous places for me. I had trouble keeping my balance while standing, so having the grab bar to hang onto was reassuring. I often didn’t pick up my feet enough to get over the tub rim (due to peripheral neuropathy) and can trip too easily. By hanging onto the grab bars, even if I don’t pick my foot up enough, I can prevent a bad fall.
Grabber – (http://www.amazon.com/Ettore-49036-Grip-n-Grab/dp/B001B13PC2/ref=sr_1_1?ie=UTF8&qid=1453922855&sr=8-1&keywords=grabber) or (http://www.amazon.com/Duro-Med-Aluminum-Reacher-Grabber-Magnetic/dp/B0009STNME/ref=sr_1_4?ie=UTF8&qid=1453922855&sr=8-4&keywords=grabber) – I call it the Grabber. Lower back pain often makes bending over for anything painful. I use the Grabber for picking up anything and everything. It’s also good for reaching behind the dryer for those elusive single socks.
Green smoothies and the Vitamix (www.vitamix.com) – My Lymie friend Dan told me he was drinking green smoothies in the morning; they were making a significant difference in his energy levels and were supposedly helpful with reducing inflammation. I said, “If it doesn’t taste good, I don’t eat or drink it.” Dan gave me the recipe, and Jeff bought me the Green Smoothie Revolution (www.amazon.com/Green-Smoothie-Revolution-Radical-Natural/dp/1556438125) book for more recipes. I also found it helpful with reducing my chocolate cravings. My favorite green for the smoothies: kale. Yes, you need the Vitamix in order to do it right. It will make all the difference. I have also heard the Ninja Ultima is a good alternative to the Vitamix (http://www.ninjakitchen.com/ninja-ultima-blender/).
Heating pad for end of the bed – (http://cozywinters.com/shop/bed-foot-warmer.html) Helps keep my feet warm in the winter – especially important for peripheral neuropathy patients. It is different than a regular heating pad and better! One can also use an infrared lamp similar to ones used by acupuncturists.
Hobbies – I did a lot of reading during treatment, and not only about Lyme Disease. I read for FUN. It took my mind off reality. For many months, brain fog prevented me from reading anything ‘significant.’ So the lighter material made it easier to maintain this hobby. I was already an avid knitter and needlepointer; I actually had to give them up for awhile because the repetitive motion aggravated my joints, but I picked up projects whenever my body allowed.
Hot tub – Jeff liked it for helping to relax his muscles, a good time and place for meditation as well. If you have skin issues, be careful, as chemicals can sometimes irritate. The bromine may compete with iodine in your system so be sure your iodine intake is adequate.
Intuition – Listen to it; follow your gut.
Laughter – Hours and hours of “Whose Line is it Anyway?” and “Big Bang Theory” worked best for me. Laughter heals. When I asked fellow Lymies for their suggestions for this list of practical aids, many of them stated, “Laughter is the most important.” Numerous studies have shown laughter releases endorphins. And that can only make one feel better.
Meal planning – A game changer for me was signing up for the monthly program of nutrition counseling and meal planning at www.chroniclymenutrition.com. Creator and owner Robin Shirley provides a full meal plan and schedule and even the shopping list. She explains why it’s important to eat various foods and how they can impact the healing process. Robin took the thinking out of food preparation for me and I sorely needed this. Her program does much more than simple meal planning, but that was the big attraction for me.
Meditation – I still struggle with this one. I have tried many different types of meditation, some more successful than others. My “mantra” to you is to keep trying until you find something that works. And some types may work for a while and then you may need to adjust. The important aspect of this is to find a way to get your body and mind quiet for a period of time each day.
Naps – I take them often. NOT taking a nap was detrimental to my health. Rest is an essential part of the healing process. I cannot emphasize this enough.
Nutritionist – Initially, I only needed a few sessions with a nutritionist after Dr. Mozayeni’s suggestion to go gluten and dairy free. I didn’t exclude them from my diet completely, but I found reducing my intake of gluten and dairy products significantly improved my intestinal tract problems. I needed help from a nutritionist to show me options and alternatives. She taught me how to make toasted kale disguised as potato chips. She introduced me to dehydrated bread. She also took me through a few grocery stores to familiarize me with healthier options. I still need more sessions with a nutritionist to get me through the “no sugar” portion of my life – one step at a time.
Personal Trainer – It was almost two years into treatment before I could do any sort of exercise. When I re-started, I was terrified of re-injuring myself. I found a trainer who was previously a US Army Master Fitness Trainer. She helped injured servicemen regain full physical mobility. It’s important to find the right match and to find someone who is educated and experienced so they don’t let you injure yourself.
Pill Boxes – (http://www.amazon.com/Compartment-Pill-Organizer-DEEP-Inch/dp/B000E13BVA) I used these, making my own label for each section: Before Breakfast, Breakfast, Before Lunch, Lunch, Before Dinner, Dinner, Bedtime, 2 AM. So I needed two boxes for each day. The 1-inch deep ones were big enough to hold all of my pills. I took approximately 40-50 pills daily during treatment. INSERT PillBox1 and PillBox2 photos
Progress Journal – In a simple Excel spreadsheet, I recorded the date and the event of anything significant for me. I referred back to this spreadsheet often, especially during herxes, to remind me of the progress I had made. I included things like “made the bed,” “started putting on make up,” and “shaved my legs 5 days in a row.”
Rest – I cannot emphasize this enough. I live in an area of the country where “downtime” is not encouraged. And this was probably the most difficult element for me to maintain during my treatment. I am convinced rest is an essential part of my recovery. Notice I wrote “Naps” and “Rest” as two separate items. That is because they are two separate items. You need BOTH. And they are ESSENTIAL to HEALING.
Soap – My skin started reacting to almost anything I put on my skin. I stopped wearing makeup. I had to find a soap that didn’t cause more skin breakouts. I use fragrance free unscented soap and haven’t had an issue since I started using it. (https://www.etsy.com/people/teresagayers). As I have healed, I have started being able to tolerate some soap with essential oils included. I get those from I get those from https://www.etsy.com/shop/KikisHopeSoaps and https://www.etsy.com/shop/BadRickSoaps.
Stick with the Winners – Connecting with others who have the same disease is a huge aid during treatment. It is important to choose those “others” carefully. Staying positive is a key element of a successful recovery. I chose to surround myself with those who exuded compassion, genuine positive energy, humor, and fierce determination. We fed off of each other’s energy throughout our respective treatments.
Stretching – (www.simplefitnesssolutions.com/stretch.htm). I stretch in bed before I get up, I stretch sitting on the bed, standing in the shower, drying my hair, putting on my clothes. I stretch in my chair at work, on the couch at home. I stretch whenever and wherever possible. The strap is helpful when muscles are really tight.
Trigger Point Injections – I received trigger point injections of Marcaine and Toradol. These are NOT steroids. Toradol is an anti-inflammatory. Marcaine is local anesthetic. These injections gave me short periods of being pain free, something I had not experienced in decades. I had no idea the exhaustion chronic pain causes until I had none for those 24 hours.
After the first two injections, I got up from the exam table and realized I had moved from a prone position to standing up without any pain. The smile that grew across my face was the size of the Cheshire cat’s. I leaned over to pick up my jeans, bending straight and forward, no favoring of either side. I giggled. I stepped each leg into the jeans easily. More giggling. I bent over and picked up my sneakers. It felt as though I had “gotten away with something.”
Dr. Mozayeni came back into the room and asked, “How do you feel?”
I sat in the chair and lifted my right leg with absolutely no pain. I repeatedly stood up and sat down, straight and balanced with no hesitation. When standing, I bent over and touched the floor with my hands, again, with no jerky movement, and absolutely no pain.
Completely overwhelmed with gratitude and excitement, I could only utter, “This is mondo-bizarro.” Dr. Mozayeni chuckled in retort. I walked out of his office looking like the cat that ate the canary. I did not stop smiling for the rest of the evening.
Most of the above are items I never would have considered before my illness. But when we want to heal, willingness becomes key in our attempt to find what works and what will keep us on the path to healing. I found many of the above items helpful in my recovery. I hope you do as well.