My Diet, Supplements, and Routine

This page is for fellow Lymies, and of course for those more interested in the ridiculously time-consuming and expensive regimen that goes alone with Lyme Disease. If only it were the meds..ha! Ask any late-stage Lyme patient and they will tell you a horror story about tens of thousands of dollars in supplements, nutritional aids, infrared saunas, acupuncture, holistic treatment, because believe me, Lyme Disease is NOT just Lyme Disease.

It is accompanied by (and because of the disease) messed up hormones - adrenal fatigue & thyroid problems, heavy metal toxicity, toxicity from the treatment, chronic viruses, stomach inflammation and problems, sometimes autoimmune disorders, and much more. We are all so sick that we need all these supplements and meds to address the bodies that we inhabit that are so incredibly messed up, but ALWAYS look so incredibly normal to those around us. A lot of my non-Lyme friends ask me about my very strict diet that I follow and why I avoid certain foods. No more answering questions: the answers are all below!

A proper DIET is, in my opinion, essential for healing any major illness. Also included are most of the SUPPLEMENTS I take and ROUTINES and other HEALING MODALITIES I use. I believe an integrative holistic approach is the best way to approach this complex disease. Unfortunately, most Lyme docs don't have enough knowledge of diet or time to discuss it with you at your appointment. There is so much other stuff going on and so many disasters and fires to put out that diet doesn't get much air time.

Luckily, though, there is a TON of information in books, from other Lyme patients, Lyme support groups, and online. The Body Ecology Diet (thanks Liz!) and The Lyme Diet are two books I live by. I've sort of created my own diet from what I have learned and tweaked it over the last 3 years with the new information that I acquire everyday. The Body Ecology Diet is in fact an amazing book about healing diets for not just Lyme, but anyone with a long-term disabling illness, especially cancer, colitis, Crohn's Disease, and HIV/AIDS.

Although I used to eat all kinds of delicious food and also junk food (I grew up eating Fruity Pebbles for dinner and McDonald's 4-5x/week and only 5 years ago averaged 4 pints of ice cream per week), my diet is now solely centered around healing. It saddens me to no longer have rich eclectic meals and ice cream sundaes, but I feel so much better off those foods that the sacrifice is worth it.

Eating, as many of you know, is probably in my top 2 favorite activities in life. I LIVE to eat. I love to eat everything and LOTS of it.

Disclaimer: of course I cheat sometimes on my diet, I'm HUMAN! I used to NEVER cheat, but after a few years, sometimes I just need to break down and eat normal human food and suffer the uncomfortable consequences. Like that time I went to Little Star (remember Sue and Sam?) and put down 7 deep dish slices of pizza in an hour....

What I do NOT eat:
Gluten (this means almost any kind of yummy bread, sandwiches, pizza, subs, croissants, cereals, cookies, all those are distant dreams now). Gluten is the biggest and baddest of them all. Note, I don't have Celiac disease, which is a severe allergy to gluten that can make you very ill. But gluten is a food that is a burden on the liver and on the body. And when you are bombarding your body with toxic hell, as we Lyme patients are, you want every extra bit of burden taken off your body and especially your liver, which is doing all the grunt work. Otherwise your symptoms are much worse. It is interesting to note that about 60-70% (estimated) of the population has a gluten sensitivity, which may or may not have implications in your life. However, I know a lot of people who had stomach problems, allergies, arthritis, and other bothersome chronic health conditions who eliminated gluten and found relief from their symptoms. Gluten is also a major part of the G.A.P.S. diet, which I believe was developed mostly for children with learning disabilities and those with autism who benefited greatly by removing gluten from their diets.
Dairy (except eggs) – dairy is an inflammatory and I am somewhat lactose intolerant; when you get Lyme or any other disease, food sensitivities are worse and food allergies can even develop temporarily during the time you are sick
Sugar (any kind including fruit, vinegars, etc.) – any form of sugar is an immune suppressant – just a big bad no-no, but when I need a fix I snack on gluten-free ginger cookies.
Caffeine (I never drank coffee anyways. People usually tell me I'm ‘naturally’ caffeinated except for the last 3 years, of course).
Alcohol of course (I once sipped 1/8 of a cocktail at dinner one night and literally felt like I was going to fall off the chair for the next hour: not only would I be on the floor passed out and likely puking if I had even one cocktail, most of the medication I take would not mix well with alcohol, causing major problems for my liver and organs)
Nightshade vegetables and any acidic foods like eggplant, tomatoes (not having heirloom tomatoes with mozzarella and basil breaks my heart every summer), bell peppers, onions. Note, this piece is something I extracted from Ayurvedic (ancient Indian medicine) science and nutrition. Keeps acid reflux, stomach problems, and inflammation down.
Processed foods, refined carbohydrates (i.e. white flour, white rice), non-organic foods, meats with hormones , antibiotics, or nitrates
Any spicy food. I'm Indian, but my stomach is so wrecked from all the treatments I cannot even eat salsa!

What I CAN eat:
Quinoa (highest protein, lowest glycemic index grain on the planet), really good for people wanting to lose weight. I am trying to do the opposite but it’s a great gluten-free grain. Brown rice (occasionally white rice), gluten-free waffles, gluten-free bread (I avoid b/c it tastes like cardboard), any bread made with quinoa-, rice-, tapioca-, garbanzo bean-, buckwheat- or other gluten-free flour.
Meat and LOTS of it. Organic, hormone and antibiotic-free. Even when not sick, I will never go back to eating non-organic meats or produce. I eat meat every few hours to keep my blood sugar stable (especially necessary for people with adrenal fatigue like myself). Keeps blood sugar even keeled as opposed to carbs, which make you crash shortly after. I also make sure to have protein EVERY morning with a whey protein powder smoothie mixed with almond milk. Carbs without protein in the morning is a recipe for energy crashing (something I wish I knew years ago) mid-day or afternoon.
Vegetables and LOTS of them. My parents, caretakers, or I probably spend 1-3 hours a day buying, cutting, washing, and preparing veggies. It’s time-consuming!
Good Fats: avocado, nut butters, olive oil, olives
Herbal teas and TONS of water
Juicing: My old roommate got me hooked on our Jack La Lane juicer and I’ve gone through 1 already and onto my second. I have juiced ALMOST everyday for the last 2.5 years. I juice about 20 oz. of green veggie juice in the morning (kale, collard greens, daikon root, broccoli and stems, celery, cucumbers, red cabbage, dandelion greens, ginger). It tastes like lawnmower juice but it is potently energizing and amazing for your health because the enzymes go straight into your bloodstream whereas they get cooked away with warmed veggies and raw veggie fiber prevents the enzymes from going straight into the bloodstream. This means, however, you still need your 4-7 servings of veggies on top of this to get the fiber. I will probably juice for the rest of my life (just not everyday, it is exhausting).
TONS of salt: for most, this is not good but my blood pressure and cholesterol are extremely low despite the amount of salt and fat I eat. People with Lyme often have severe endocrine problems, as I do (hypothyroidism, adrenal fatigue), and sea salt with proper trace minerals/elements is essential. Sometimes I put a tsp or more of salt in my water if I am lightheaded!! It helps rebuild the adrenals. My choice: Celtic Sea Salt brand.

Let me be honest: this food routine gets old, boring, and depressing. I eat basically the same foods all the time. Finding creative recipes online or from friends is essential. The Body Ecology Diet book also has great recipes in the back. But I look at it as my job. I am very strict about my diet - the foods that go into your body play a HUGE role in getting well.

Here are some of the supplements I take that I find helpful. I haven't listed everything or my medications because I'd like to maintain SOME sense of privacy!

Chlorella, 30 tablets chewed and swallowed per day, as a binder plus for
detoxing metals, etc. (many people do cholestyramine instead but it was too harsh for me)
Milk thistle for detox, 3-4 pills per day
Acetyl-L-Carnitine, 2-3 tablets per day for energy production, and increased cellular energy in brain (you can check your carnitine levels via blood tests)
Terramin Trace Minerals powder for healing the gut, detox, and supplementing essential minerals (1 tsp daily with water)
Pekana Homeopathic Detoxification Drainage Kit (Itires, Renelix, and Apohepat for drainage of lymphatic system, kidneys, and liver), about 20-30 drops of each in water 2x/day
Detox 1 herbal tincture (8 drops/day) and Detox 2 herbal powder made by Lyme-specialized herbalist in Santa Rosa at Gordon Medical Associates.
Bouloke Lumbrokinase, 2-3 pills per day before meals for biofilm breakup, also added Curcumin to this to help thin out the blood as well; many of us have the hypercoagulation problem where the blood is too viscous and thick, causing slow flow of blood to the brain and other areas it is needed
Co-Q 10 and Alpha Lipoic Acid (when I'm not on Mepron, which is rare, since these both interact with Mepron). Note ALA and Acetyl-L-Carnitine work well when taken together.
• For energy to function, Thorne B Complex #5 Multi-B, 1 per day + 1cc Methylcobalamin B12 shot/intramuscular injection DAILY (I just found out I've been doing these shots subcutaneously and NOT intramuscularly, which is probably why I wasn't feeling any benefit from them).
8,000-10,000 I.U. Vitamin D-3 per day (it took 3 months at this level to get my D levels up to 60, where my doctor wants them to be). Most people don't realize that 20 is way too low for a Vitamin D level even though most lab ranges will say 25 is normal. Vitamin D is a huge pre-cursor in immune system function.
Genestra Super EFA Fish Oil (2 tsp/day)
Magnesium Glycinate or Magnesium Malate, 1250 mg daily but realistically I never get this amount because my stomach cannot handle it
Calcium, Multivitamin (Perque Life Guard) 3-4 per day - this brand contains Tocotrienols and Tocopherols, great for many Lyme symptoms
• For stomach pain and problems, which is very frequent for me: Aloe Vera juice, 1/2 cup, 2x/day + DGL (deglycerinated licorice) 2 tablets chewed before meals, Stomach Ease, Chamomile, Fenugreek, Mint and Ginger tea, Digestive Enzymes, Pancreatic Enzymes
Probiotics: we all take Saccharomyces Boulardi up the wazoo of course, but I also always take Custom Probiotics 6-strain blend powder - it literally saved my stomach from destruction last summer. It is ridiculously expensive but there is no way I could handle all these abx without this. I take the highest maximum dose, 6 scoops per day. I also rotate in different probx, as recommended, every 12 weeks: Prescript-Assist Pro (soil-based probiotics), Theralac, Klaire, Healthy Trinity, etc.
NAC (N-Acetyl Cysteine), 500-1000 mg/daily or as needed for liver support
DHEA, 12.5 mg daily + 15 mg Hydrocortisone (spread into 2-3 doses) daily for adrenal insufficiency. This SAVED my life. I could barely walk to the bathroom before I started on these adrenal supports back in 2008 before I was diagnosed with Lyme.
Actigall, a MUST when on IV drugs (esp Rocephin) to protect your gallbladder. It is basically bile in a pill. Gross, but necessary! I do 2-3 per day. It has also helped with my acute pancreatitis issues.
Evening Primrose Oil, 1300 mg, 3x/day for cramps and protecting the pancreas
AP anti-parasitic herbal tincture from Gordon Medical Associates (currently, though I've used Ivermectin before and may try Alinia for this as well)
Methylation Protocol, combination of 5 different methylation co-factor supplements. Methylation pathway testing is fairly common now among holistic LLMDs and naturopaths.
L-Ornithine and Jernigan's Anit-tox II Liquid for excess ammonia; my Lyme naturopath (separate from my Lyme doctor) tested my homocysteine levels, which apparently, if too low, indicates that your body has trouble eliminating ammonia from the body and the brain, which is the cause of a lot of fatigue and illness in some Lyme patients. My homocysteine level was 4.0 and apparently much too low. I originally tried a stronger product by Ecological Formulas, but it removed the ammonia at a rate much too quickly for me and I became INCREDIBLY ill for 7 days. I am very sensitive, so just be sure to be aware of what your body tells you.
B12 (methylcobalamin) shots. Dr. Burrascano's protocol recommends 25 mg per 1 cc daily, and he indicates that you need to be peeing red within an hour to make sure you are getting enough. I, being the sensitive creature I am, could not even tolerate 10 mg per shot. So I am experimenting with what dosage works for me, but for most people, it works wonders in terms of increasing energy and reducing neuro symptoms.
Lemon water: excellent detoxifier.
• For sleep, in addition to my sleep meds, I take melatonin 3 mg regular and 3 mg time-released), Magnesium glycinate (400 mg), Seriphos (1-3 depending on how bad my Lyme-induced insomnia is), Tryptophan, GABA, and if I still can't sleep, I add Hyland's Homeopathic Calm Forte, Benadryl, and/or L-Theanine. Ridiculous that this disease requires this much supplementation to just SLEEP when we are all so exhausted but just cannot sleep!

The rest of my routine: *Luckily, many of these healing modalities have been donated to me or given at reduced rates since the financial burden of this disease is now averaging $7,000 out of pocket for my IV treatment (and that is WITH health insurance!).
Skin brushing (I used to do this but no longer b/c of my picc line. Just getting myself to take a normal shower is hard enough).
Rebounder (bounce on exercise ball or do small bounces on the rebounder for lymph drainage)
• EFT (Emotional Freedom Techinique)
Happiness Program with Dr. Aymee Coget: Dr. Coget is a high school friend who has graciously donated countless hours of her time to helping me heal through the power of learning and incorporating happiness science and positive psychology into my daily routine. She is a friend and an amazing inspiration to me to keep going, and constantly reminds me of the power of manifestation with positive thought. "Aymee uses theories from positive psychology to help her clients reach optimal human flourishing and high-sense of well-being in their life, work, and their body and soul. She also uses happiness teachings from Dr. Bob Nozik, a happiness expert, as well as guidance from Robert Muller, Ph.D. former UN Assistant Secretary General who was nominated for the Nobel Peace Prize 19 times. To address the physiological component of one's brain chemistry she also uses techniques put forth by Jinendra Swami, the messenger of sustainable happiness."
IMT (Integrative Manual Therapy); locally in SF, I receive IMT from Jen and Arlene, who have been an amazing team of healers, taking me from feeling like on my death bed to functioning again: Alan Connealy, who now practices at Connealy Chiropractic, also used to treat me and he in fact, is the FIRST person to ever mention that he picked up that I had Lyme with nothing other than a vial and his hands(1 year before I was even diagnosed)!
• Reiki
• Acupuncture
Energy Medicine Healing: at the recommendation of an excellent Mill Valley doctor, I started working with John Lavack, an intuition and energy medicine healer. It is an understatement to say John is AMAZING. I know people who do not 'believe' in holistic forms of healing may scoff at this, but even my mother, a PhD in immunology, and scientist schooled in ONLY Western ways, has witnessed the amazing powers that meditation, yogic breathing, and this healer have had on my life and my ability to heal. I am not here to force my belief systems on you, but rather to say that this man is quite possibly responsible for a great amount of this blog coming about. The ability to ACCEPT this disease as a journey rather than a curse, and to see my way through it with humility, to learn to free myself from toxic energies of other people and things (which I had no idea I was involving myself with ALL the time) has been a gift. There is SO much I have learned from him in 2 years, but I have to thank him for learning about energy and intuition medicine and the profound ability to heal yourself has led me down a very particular path in my life. I cannot imagine living any other way.
• Qi Kung (Chi Gong) Healing and classes
• Used to do yoga stretches a lot but hard now with my picc line in my arm b/c it is so restrictive
Coffee enemas: haven't done these yet, but I hear they are a must. There will definitely be a post on this!
Myers cocktails (10,000 – 25,000 mg Vitamin C plus essential vitamins, B’s, calcium, magnesium, trace minerals) all mixed in 1000 mL lactated ringer bag with electrolytes: infuse through my picc line as needed and as budget will allow
Glutathione pushes into my picc line (1,000 mg 3x/week)
Epsom salt and hydrogen peroxide baths for detox and magnesium absorption (HPO oxygenates the blood); occasionally do Borax mixed with baking soda for same effect and not as drying on skin
Oxygen tank, 2-3 L/min. I used to use this at first because I couldn't breathe and had such severe air hunger attacks from Babesia that I would wake up choking and unable to breathe. But now I use it even to get the blood flowing to the brain - a few LLMDs use it just for that purpose to stimulate flow in the brain and reduce neurological symptoms, almost like a poor man's Hyperbaric (HBOT) treatment. I'd like to do HBOT, but it's very expensive but it's something I will consider if I am still ill after years of conventional and herbal treatment.