Phase 3: Holding Steady
I WISH I could sit here and tell you that my last several weeks of “Phase 2: Antibiotics” has been easy and smooth sailing. However, that has most definitely NOT been my reality. Nonetheless, I am continuing to make GREAT strides in regaining my health — even despite setbacks! I just tolerated an almost two-week family vacation (16 hour drive EACH WAY) COMPLETELY “out of my routine” and comfort zone! That was a HUGE success for me (especially since I had nearly two months between February and April of not being able to drive OR ride in a car with my eyes open even because my vertigo was SO BAD).
When starting the Plaquenil on June 10th, I unfortunately learned the hard way that I Herx BAD when starting a new script. I had to “ease into” taking this antibiotic every-third-day for several days. Once I was able to tolerate that spacing, I increased the spacing to every-other-day for a few days. Finally, about 10 days in I was able to tolerate it daily as the prescription was written, I relied heavily on my Tri-Salts (see post here) and Burbur/Pinella tincture to keep the Herx symptoms of increased pain, headaches, agitation, light and sound sensitivity, peripheral neuropathy, and neurological symptoms to a minimum.
After I became “stable” on the Plaquenil, I had to ease into my 2nd antibiotic Doxycycline the same way… one pill every-other-day for half a week or so… one pill daily for a few more days… two pills daily every-other-day… and then finally two pills daily as my prescription was written. I then waited another few days of being “stable” on BOTH the Plaquenil AND Doxycyclilne before moving on to the 3rd antibiotic. Both the Plaquenil and the Doxycycline were written to kill (as a dual force) the cystic and cell membrane forms of the Borrelia Burgdorferi (Lyme) bacteria. Since I am a “chronic Lyme patient” and the bacteria has crossed into BOTH my central AND peripheral nervous systems (as well as my thyroid, as evidenced by my Hashimoto’s thyroiditis)… it is important to use multiple antibiotics and to vary them frequently throughout my course of treatment. Again, I can’t recommend reading Dr. Horowitz’s book “Why Can’t I Get Better” enough! He explains this concept in METICULOUS detail in his book! Link below to his book on Amazon. BEST $20 you will spend in your (or some one you love’s) journey with Lyme!
That brings me to starting my 3rd antibiotic, Azithromycin (commonly “Zithromax” or “Z-Pack”). Now THIS antibiotic was the trickiest of all 4 of my antibiotics to acquire. I worked closely with a WONDERFUL and extremely helpful pharmacist in the Twin Cities who spent THREE WEEKS contacting 4 different manufacturers to try to find one who made Azithromycin without gluten or diary (due to the severity of my food allergies). Unfortunately, he did not have any luck. ALL Azithromycin is made containing lactose, save one manufacturer who makes it without lactose but with soy (which I also do not consume due to estrogenic and goitrogenic qualities). That being said, I had to use a compounding pharmacy for this prescription (which is AGAIN not covered by insurance). Nonetheless, according to my LLMD… I CANNOT be taking antibiotics to kill bacteria in my body while continuing to create inflammation by additives in the antibiotics which I am allergic to. Then I am shooting myself in my own foot.
I started Zithromax on Monday with my usual “every-other-day” approach. However, less than 24-hours later I was back in bed for a 6-hour nap with FULL-FLEDGED Babesia Duncanai symptoms back… hot sweats, pulse racing, hot/cold intolerance, debilitating fatigue (a whopping total of TEN HOURS worth of naps in 2 days), extreme agitation, and complete peripheral neuropathy/numbness/and loss of sensation in my right arm from the bicep down.
After reconsulting with my LLMD today, she assured me that I was, in fact, experiencing another Jarisch-Herxheimer reaction. This is GOOD in one sense, because it means that the Azithromycin is doing EXACTLY what it is supposed to do (going after the Babesia); however, as my LLMD does NOT want her chronically ill, patients feeling WORSE… I AGAIN have to slow it down. I took a break from the Azithromycin yesterday and will continue to “pulse” it back in (as my body tolerates).
After I become “stable” on the Azithromycin, I will begin my 4th and final antibiotic, Mepron (which is sometimes called “liquid gold” in the pharmaceutical industry). This bottle of liquid yellow goop costs $975.99 BEFORE INSURANCE. It is some serious stuff and was written to eliminate my Babesia (which is another tickborne illness I acquired that is very similar in symptomatology to malaria).
I will keep you all posted as I finish “Phase 2: Antibiotics” and maintain this baseline (along with the near 75 supplements I take daily) until I see my LLMD again in September.
I ALSO have my first monthly check with my primary care doctor next week for a CBC, CMP, and an EKG (to make sure that my body is tolerating the antibiotics and staying strong),,, and also with an ophthalmologist (good thing my daddy is one!) for a Visual Field Eye Exam.
Pray for me as I pray for YOU! My current Novena is to Our Lady Undoer of Knots. Please feel free to comment below if you have any personal intentions you would like me to specifically pray for.
I MADE IT! After last seeing my LLMD on May 22nd… multiple trips to Walgreens to fill ALL 9 of my prescriptions… working with an AMAZING pharmacist who had to contact multiple manufacturers for me to make sure that ALL of my prescriptions were gluten-free, dairy-free, and free of FD&C blue… multiple reorders from my LLMD’s office for all 19 of my supplements… I have successfully eased into them ALL! This has been no easy task for a busy mama. This has also not been easy from an “easing in” and “preventing Herx’s” perspective. Oftentimes I am able to take “1-2” supplements twice a day, which means I had to work up from “1” and see how much my body could or could not tolerate. I currently have NINE daily alarms set on my phone.
Since my last blog post, I have added in:
- Magnesium Glycinate: for healthy muscles, nerves, bones… maintenance and repair of cells, energy production, hormones, nerves… also metabolism of proteins and nucleic acids
- Benfotiamine (B1/Thiamine): an essential nutrient the body needs to turn food into energy, supports healthy blood sugar metabolism and helps protect the body’s tissues against advanced glycation end products and oxidative stress, helps to inhibit flammatory responses
- Lipoid Acid: an antioxidant that is essential for aerobic metabolism and turning glucose into energy, also supports heart, nerve, and eye health
- “Brain Gain:” a natural, dietary supplement containing berberine, biotin, folinic acid, hydroxytyrosol, luteolin, olive pomace oil, and selenium… for cognitive function and brain health
- Pro-Omega: Omega-3 healthy fats (DHA & EPA) for healthy heart, eyes, brain, and immune function, supports healthy lipid levels as well as glucose helps the body handle stress in a positive way
- HPA Adapt: an herbal blend of rhodiola, ashwaganda, eleuthero, holy basil, and maca, awesome for your thyroid, adrenals, and endocrine system in general
- Medi Clay: to detox and bind the gliotoxins in my system
- Activated Charcoal: to detox and bind the tricothecenes in my system
I am pleasantly surprised how well I have been tolerating the Medi Clay and Activated Charcoal (to bind the tricothecene and gliotoxin mycotoxins in my body from our previous house with black mold) without Herxing.
That brings my current list of daily supplements to (over 50 pills taken every day):
- daily juicing (12-ish ounces every AM)
- Daily hydroxocobalamin (B12) subcutaneous injection in hip(s)
- Orthobiotics (4 daily, 3 hours away from antibiotics)
- Saccharomyces boulardii (2 daily, 3 hours away from antibiotics)
- Vitamin C, 2,000 mg (8 daily)
- Vitamin D (5-8,000 iU daily)
- Magnesium glycinate (4 daily)
- Magnesium oxide, as needed (1/2 – 2 tsp. twice daily)
- Benfotiamine (B1) (4 daily)
- Lipoic acid (2 daily)
- Brain Gain (3 daily)
- Pro Omega (4 daily)
- MediClay (4 daily, 2 hours away from everything else including food and supplements)
- Activated Charcoal (2 daily, 2 hours away from everything else including food and supplements)
- HPA Adapt (2 daily, before 3 PM)
- Zinc (1 daily)
- Selenium (1 daily)
- D-Hist (9 daily)
- L-Theanine (as needed, on empty stomach)
- Burbur Pinella tincture (10-20 drops as needed in water for Herx)
- TriSalts (1/2 tsp. as needed up to 3 times daily for Herx, but 4 hours away from antibiotics)
That brings my daily list of prescriptions to another 12 pills daily (plus subcutaneous B12 shot, nasal spray, and liquid Mepron):
- Naturethroid (for Hashimoto’s)
- Compounded hydroxocobalamin (B12)
- Dr. T’s Nasal Spray (from compounding pharmacy as well, to bind and eliminate mycotoxins)
- Nystatin (to combat yeast build-up)
- Minocycline (sub out for doxy on days I’m in the sun)
- Azithromycin (which I ended up having to order through a compounding pharmacy without lactose)
I begin my antibiotics tomorrow with the Plaquenil, and I introduce one a week (in order above) through the month of June. The 5 antibiotics are following Dr. Richard Horowitz’s protocol for Lymes, Babesia, and Bartonella as outlined in his AMAZING book “Why Can’t I Get Better.” Had I not had so many confections in addition to the Lymes and not had Lymes undiagnosed for SO LONG (to the point it went into both my central AND peripheral nervous systems), then I would not need so many antibiotics. 30 days of amoxicillin alone oftentimes works GREAT and is all that is needed for someone who gets a tick bite and catches an EM (bullseye) rash right away… where the Lymes bacteria has NOT migrated throughout the body, changed forms, attacked tissues, or crossed the blood-brain barrier. Ironically, I have been very “anti-antibiotic” my whole life, always seeking a more natural alternative.
However, the goal right now is to lessen the bacteria load in order to get my body functioning on its own again (without being overtaken by Lymes). The goal is to “rotate” the antibiotics so as to kill the Borrelia Burgdorferi bacteria which like to resist antibiotics by changing forms. The bacteria needs to be killed in its cell wall, cystic, AND intracellular forms. B. Burgdorferi bacteria also changes shapes from a spirochete, to an “S” form, to a “L” form so as to make itself unrecognizable to both your immune system and to antibiotics (which is why they need to be varied and rotated).
I have to follow-up monthly with my primary doctor (not my LLMD) for a CBC, CMP, and EKG to make sure my body (and organ systems) are tolerating the course(s) of antibiotics. Additionally, I have to follow-up monthly with an eye doctor (good thing I can count on my dad for this) for a Visual Field Exam (possible side-effect/complications from the Plaquenil).
Please continue to pray for me in my journey as I pray for YOU! ❤
The last several days have consisted of LOTS of ups and downs, including a REALLY hard day yesterday. I would even dare to say one of my worst days YET.
On Saturday, May 27th I introduced zinc into my supplement regime. 15 mg per day (as zinc picolinate), taken in the morning with food. Link to product on Amazon below.
On Sunday, May 28th I introduced selenium. 200 mcg per day (as selenomethionine), taken in the morning with food. Link to product on Amazon below. Selenium is also a KEY antioxidant for proper thyroid health. As directly quoted from Hypothyroid Mom (link below), ” In it’s prevention against oxidative stress, we can think of this key mineral as useful in thwarting heart disease, rheumatoid arthritis, and, as I noted, cancer, among other things. It’s a precursor to the production of glutathione, the “mother” of all antioxidants. It’s depleted in our soil, due to a number of environmental factors, and blood levels of selenium have been shown to plummet as we age, leading to increased cognitive decline.”
Today I introduced magnesium glycinate. 120 mg, taken at noon with food and before bed. Link to product on Amazon below. As directly quoted from The Wellness Mama (link below), “Magnesium is responsible for over 300 biochemical reactions in the body and impacts blood pressure, metabolism, immune function and many other aspects of health. Magnesium deficiency is a widespread problem and some estimates suggest that over 90% of us are deficient.”
Here is an article I found to be helpful in explaining why zinc and magnesium (in addition to a few other supplements such as Vitamin C & Vitamin D) are helpful in an immune-boosting supplement regimen for someone dealing with Lymes.
However, I am first-handedly discovering that you can still “Herx,” even when boosting your immune system to fight Lymes. It doesn’t matter whether or not you are killing off the bacteria with antibiotics OR boosting your immune system naturally in order to be able to fight against the stealth borrelia invaders… point is that oftentimes you find yourself feeling FAR WORSE before any apparent signs you are ever going to FEEL BETTER. I spent the better part of 18 hours in bed sleeping yesterday, unable to lift my head off my pillow or lift my hands to check my ever-incessantly beeping phone across the room. Lymes Disease is no joke. I am 6 days into “Phase 1: Introducing Supplements” on my healing from Lymes journey. I have 7 more days (one more week) of introducing 7 more supplements), and then I am on to “Phase 2: Antibiotics.”
Thank you for joining me on this walk, and be assured that I pray for you as you pray for me! I make daily silent intentions for all visitors to my blog and Facebook page.
I have pretty much been stripped down to bare bones in this journey with Lymes and autoimmune thyroid as far as what I CAN and CANNOT consume.
Dairy has been out of my diet COMPLETELY since I was breastfeeding my 1st child, daughter Audrey, in 2003 with SEVERE acid reflux. We’re talking… this child puked a rainbow-arch of angry vomit OVER her carseat INTO THE LAP of a person sitting next to me at Mass once. Removing dairy from my diet while b/f helped some of her issues (colic and sleep-refusal in addition to GERD) though it did not take them all away.
Out the window went sugar in 2004 with baby #3, son Blaise. I had some major candida and parasite issues after having him (lingering remnants from a mission trip to Guatemala in 1998 immediately after graduating high school). Sugar I avoided as much as I could, or I substituted. However, I never really went “sugar free” (the way I am now, only getting sugar in my AIP diet from the two sources of fruit I eat every day). Christmas every year always seemed to be a MAJOR setback for me health-wise (with the holiday cookie “cheats”).
Gluten came out in 2013 after having my 6th child, daughter Teresa. At 3 months postpartum while doing the 21-Day Fix (Beach Body program), I started experiencing SEVERE stabbing pains in my stomach after reintroducing gluten when the 21-day, clean-eating program was over. I now know this could have been a symptom of Lymes and that I should have went to my doctor. But I didn’t. I researched online and went AIP Paleo from 3-5 months postpartum and then stayed Paleo (with one daily gluten “cheat”) for two years until baby #8 came on board in 2015… and most of my inflammatory symptoms went away.
You know the story of my pregnancy and postpartum with baby #8. Being diagnosed with autoimmune thyroid and Lymes Disease has forced me to reevaluate the term “anti-inflammatory diet.” While I do NOT have either of the two genes for Celiac’s Disease, I basically need to eat as if I do. My LLMD has diagnosed me with EXTREME gluten-sensitivity and has assured me that even just ONE BITE of gluten can stay in your system for 6 months, keeping my TPOab and TGab labs high with my Hashimoto’s. “Low-gluten” and “no-gluten” are NOT the same thing when it comes to a person with Celiac’s Disease or non-Celiac EXTREME gluten sensitivity.
Coffee, you might ask? This was the last lifeline to go. I have increasingly grown less tolerant to wine over the years as well. Without coffee or wine, I’m not really sure how I make it through the day most days with eight kids. Since having DS last summer — alcohol just plain made me SICK (Lymes). Going back to the AIP diet since then has made me search for a coffee substitution. So I swung to tea. Never have been a big tea drinker and started feeling worse (if that’s even possible). LLMD assured me not only was it POSSIBLE but an ACTUAL REALITY as most teas are molds (black tea especially), and I have mycotoxin toxicity in my body (gliotoxins and tricothecenes) from the basement of a former home we lived in. NOT a good combo. However, I was still craving a rich, nutty warm beverage.
Chicory root tea has become my new preferred drink of choice! I actually feel so. much. better. not drinking coffee. I feel like without the caffeine highs and lows my cortisol levels have become more stable (I also suffer from adrenal fatigue or adrenal insufficiency). In addition to tasting AMAZING and being rich and nutty like coffee, chicory root has many health benefits! It has anti-inflammatory properties AND protects the liver (what more can a girl with Lymes and Hashi’s want?)!! Plus it contains no caffeine, so it doesn’t dehydrate. Staying hydrated while fighting off the borrelia bacteria is so important in order to keep your body flushing it out. Additionally, coffee is EXTREMELY acidic and oftentimes hard on the endocrine systems of people who have thyroid/adrenal issues. Link below is a GREAT read on health benefits of chicory root!
Here is my recommendation for the organic kind I bought on Amazon. It came pre-ground which was a HUGE plus for this busy mama. I use about a teaspoon per cup and steep it with a tea infuser. I have grown quite fond of its rich (and almost peppery), nutty taste! I love knowing I am doing something good for my body when I want to curl up with a warm, comforting beverage! I am not allowed to indulge much these days, but this has become my indulgence!
Through the ups and downs of the last four months since my hypothyroid/Hashimoto’s diagnosis (prior to my Lymes diagnosis), I have been trying to find the right “prescribed” day-to-day routine of what I do (or DON’T do) in order to be AT LEAST somewhat functional. Now as many of you who suffer from Lymes disease or Hashimoto’s thyroiditis understand – – this is a tall order. Oftentimes, you may feel differently from day-to-day for NO REASON at all – – even while keeping your food regimen, sleep patterns, and stress levels ALL consistent. That’s just the nature of the beast(s).
However, being that I am a mother of a large family and have EIGHT little people who constantly have needs – – I have been “tweaking” my days VERY meticulously to try to produce consistent results.
In March, even though I had been eating according to the Paleo diet since after delivering our seventh child, daughter Teresa, all the way back in 2013 – – I took it to the extreme. I went AIP Paleo (again) and took out nightshades, eggs, nuts, and coffee. Yes — God has a FANTASTIC sense of humor in asking this coffee-loving mama of a family of TEN to give up her sacred “go/go” juice. No results. Didn’t feel ANY different. *Insert HUGE levels of both disappointment and frustration here.*
Spent ANOTHER 22 days mid-April to mid-May doing another form of an anti-inflammatory/autoimmune/elimination diet for my LLMD. This consisted of a basically a modified-form of the AIP Paleo for the first eight days (take everything out). Then, every other day for the remainder of the diet you re-introduce foods you think you are sensitive to. I did not have to test gluten, sugar, dairy, or anything containing mold/fungus (mushrooms, ACV, kombucha, etc.) as I KNOW I am sensitive to them. However, I was surprised to find I appear to be sensitive to rice and corn. This information was extremely helpful for me to understand as I begin different supplements and antibiotics which oftentimes have FD&C food coloring and other various allergens in them. The body cannot heal from Lymes if it is still continuing to have inflammation created by ingredients your system is currently sensitive to.
In between my first and second appointments with my LLMD, I ran a full six weeks of 200 mg of Fluconazole. However, I had to back-off and take it every-other-day as I could not tolerate taking it every day without experiencing Jarisch-Herxheimer reactions. Link below for further explanation as to what a “Herx” reaction is. As my 5 y.o. says, “They are NOT my favorite.”
After my second appointment, she discontinued the use of Fluconazole and started me on Nystatin instead. Nystatin DOES contain FD&C food coloring red, yellow, and blue lots – – so it’s a good thing I am not sensitive to FD&C food colorings. This is why in healing Lymes you have to do your research ahead of time and know what your body is sensitive to. However, this time around AGAIN, in trying to get rid of the intentional yeast buildup, I have been experiencing Herx reactions in the last 48-hours. This time, however, she gave me some supplements to combat this!
Burbur-Pinella is an herbal supplement that is designed as a detox and brain/nerve cleanse. Yesterday I used 10 drops in a small tincture with water every 10 minutes for 40 minutes until my Herx symptoms were relieved. This product is AMAZING! I have a hard time finding things that “work” for my body. Product link below on Amazon.
Additionally, after introducing one more tablet of Nystatin today (I have to work up to six tablets daily) and Herxing a bit, I tried another product my LLMD sent me home with. The principle behind this is alkalizing the blood and increasing amounts of essential macrominerals in your body such as calcium, magnesium, and potassium (in the form of carbonates and bicarbonates but without sodium or other salts). This I am allowed to take 1/4 to 1/2 teaspoon in 4-8 ounces of water up to three times daily. I started today with 1/4 of a teaspoon in 6 ounces of water. Product link below on Amazon.
Finally, prior to starting my supplement regimen this week, I began juicing again at the end of March and was pleased to find consistent results! Juicing an entire head of celery, several carrots, occasionally about half of a beet, and one serving of a citrus fruit (of course, ALL ORGANIC) seems to be a concoction that works well for my body. I’ve also been trying to follow more of a holistic, cleansing habit in my morning routine (since coffee is NOT on the AIP Diet). I usually juice in the morning and avoid eating anything at all. I also infuse hot cups of water with lemon and lime juice to stimulate my gallbladder and other organ systems to get moving right away when I wake up! My LLMD also recommended adding parsley and chamomile to my juicing routine.
One day, one win at a time (and oftentimes one step forward and three steps backwards) in this battle. However, I continue to remember every day that the battle belongs to the Lord and that He has already won ALL of my battles in this life on the cross! Anything He hands me in this life, He must know 1) that I can handle and 2) that it is for my own good and salvation (regardless of whether or not I like the lot I have been dealt). Suffering is always redemptive if we allow it to be for the intentions we carry with us in our hearts… for our own families, for those we know who are also suffering, for the repose of souls, for the poor souls in Purgatory, and for SO MUCH MORE! The sky is truly the limit for redemptive suffering.
Since returning from my LLMD on Tuesday evening, I have spent the last 48-hours piecing together the 1st phase of my treatment plan: supplements. “Phase 1” is GREATLY boosting and strengthening the immune system (prior to introducing antibiotics to kill the borrelia burgdorferia bacteria). Lymes weakens the immune system, making it unable to fight against the borrelia bacteria load (while it continues to travel and migrate around your body, wreaking havoc on your health, organs, and systems).
This is what healing from Lymes looks like… in addition to my morning thyroid meds for Hashimoto’s (Naturethroid 32.5 mg), I now will be spending the next 2-3 weeks phasing in 17 different supplements, 2 different types of probiotics, a daily subcutaneous shot of B12 in my hip, Nystatin (to combat the yeast overgrowth in my system), and also maintaining a STRICT anti-inflammatory diet (sugar-free, gluten-free, dairy-free, and soy-free). Not ONE BITE of sugar, gluten, dairy, or soy.
Yesterday consisted of introducing Vitamin C, 2000 mg capsules and TWO different kinds of probiotics. Since I have so many food sensitivities (and need to adhere to such a strict, anti-inflammatory diet — Lymes THRIVES off of inflammation in your body), all of my supplements need to be allergy-free. I will build up my Vitamin C by 2,000 mg a day up to 8,000 mg total daily (to bowel tolerance) over the course of the next week. I am also taking 20 billion CFU’s of saccharomyces boulardii daily as well as 80 billion CFU’s of 6 other strains. Product links below on Amazon.
Today consisted of introducing 25 mg of subcutaneous B12 (Hydroxocobalamin) in my right hip. This was prescribed for me from a compounding pharmacy. I am now the proud owner of a sharps collector and a bruised right hip. Here is the reasoning behind incorporating Hydroxocobalamin into a Lyme patient’s “healing” protocol:
Finally, today I also introduced a product by Ortho Molecular Products called D-Hist. This product helps the body with mast cell stabilization in healing from Lymes. I will slowly build up to 9 capsules daily. Here is a great explanation as to “why” and also a direct link to the product I am using on Amazon.
With that I REST! A good night’s rest of quality, healing sleep is a critical component of a Lyme patient’s protocol. Good night, and until tomorrow’s healing additions to my rapidly-growing, immune-boosting supplement regimen!