Posted in Authentic Catholicism, Large Family Life, Lymes and Other Tick-Borne Illnesses

When You Can’t Save Your Kids…

Last week I received my oldest son’s laboratory results. We knew this was an insurmountable obstacle we would have to one day face, not knowing how long I have had Lyme Disease and coinfections for…. having EACH OF OUR EIGHT CHILDREN tested for Lyme Disease (and coinfections) through IGeneX. At $1,000 a lab test. Additionally, testing our OLDEST FIVE CHILDREN for mycotoxin toxicity, especially gliotoxins, from a previous moldy home we lived in. At another $800 per lab for that test. Raising eight children in today’s world is NOT EASY no matter how you slice it… but looking at $20K worth of JUST LABS (not even considering the high cost for antibiotic treatment for a disease most doctors don’t even believe exists)… not to mention that most Lyme doctors are cash-only (to keep from being shut down by insurance companies and other doctors affiliated with IDSA who believe Lyme to be perfectly treatable and cured with 7-14 days of antibiotic therapy).

However, when our oldest son started exhibiting classic symptoms of Lyme Disease this past winter while in fifth grade – – we knew we had to step up our game and get him in right away. Somehow, deep down inside I knew what the results would be. However, my mama heart still held out hope that I had not transmitted this horrific disease to any of my children. You see, I have NEVER pulled a tick off of any of my kids. None of my children have ever had a classic bullseye or EM rash. Sure – – they’ve had plenty of mosquito bites over the years (being born and raised in either Ohio or Minnesota), and I do know that mosquitoes can transmit Lyme and other vector borne illnesses.

However, there was no nothing I could do to prepare myself for the heart-wrenching sadness I felt after opening his labs. I died a thousand deaths all over again; however, this time it was far harder and far worse than the day I received my own lab results.

You see, the more I live this thing called life, the more I realize that I can’t save my kids. I can’t save them from getting hit by a car when crossing the street. I couldn’t even save them in utero… in my womb… the most sacred of safe spaces… from contracting a bacterial illness across the placenta line. I can’t save them from getting bad grades if they don’t work hard. I can’t save them from injuries on sports fields. I can’t save them from inevitable broken hearts during their dating and courting years. 

This disease has made me ever so aware again… by bringing me to my knees in COMPLETE humility… that we serve a God who is in control. Despite having always lived a life of constantly choosing the right portion and trying to be healthy – – contracting Lymes was something I could not control. I truly believe I was bitten either in my childhood or in high school, and that this disease lay dormant in my body for YEARS, decades even. Something changed in my body hormonally with marriage and childbirth that brought it out. I have spent the last 15 years suffering and struggling in a constant sea of up-and-down waves and mysterious “phantom” symptoms nobody ever really got to the root cause of. Until our eighth son was born last summer, and I became DEBILITATINGLY sick. However, remember that Lymes is an “INVISIBLE DISEASE” when viewed through the eyes of both the world and the medical community at large. 

In knowing that AT LEAST one of our eight children has Lyme Disease (and a very high probability of having contracted it from me in utero), I have had to AGAIN surrender. Surrender the pain. Surrender the anger. Surrender the questioning that if I would’ve never been “open to life” and bringing him into this world, then he might not have to face the things in his life that I have faced. The pain… the pain that hurts SO BAD some days you just want to die so that there’s an end to it. The judgement. The isolation. The feelings of inadequacy, worthlessness… being a shell of a human being. Parenting from bed. Watching your life from the sidelines. These are things NO ONE should have to face in a lifetime, not me and most DEFINITELY not any of my babies.

When we thought or eighth child, Jeremiah, would be born with Down Syndrome last year in 2016… it brought me to a place of poverty on my knees that I had never known before. A place of complete surrender in knowing that God knows so much more than I do. A place of complete trust like I had never known before in my life. Knowing that I would truly have to walk the walk and not just talk the talk I so eloquently preach. Knowing that God’s plan is ALWAYS right and is ALWAYS perfect but is NEVER guaranteed to be easy. I knew deeper than I had ever known anything in my entire life that we serve a God who doesn’t make mistakes and that my eighth baby would be perfect – – no matter how he was born. He was named Jeremiah after Jeremiah 29:11 and 1:5. 

“For I know the plans I have for you, declares the Lord. Plans to prosper you AND NOT TO HARM YOU. Plans for hope and a future.” Jeremiah 29:11

“Before I formed you in the womb I knew you, before you were born I set you apart.” Jeremiah 1:5

I now must face that SAME ABANDON in parenting my oldest son we now know has Lymes. I must be stronger than I ever thought it was possible to be. I will not know until I return to visit to our LLMD in several weeks WHAT his course of treatment will look like. I can only pray that it will be easier than mine since the bacteria has not yet crossed the blood brain barrier and into his central or peripheral nervous systems. He doesn’t have any neurological incapacities or peripheral neuropathy at this point in time… which is EXACTLY why we chose to begin testing our kids sooner than later.

Fortunately, I trust my LLMD whole-heartedly and know that even if the course is hard that she is doing what is best for him. I continue to thank and praise God for bringing this awareness to our eyes before my son hit a point in his life where he was struggling and unable to do things that normal kids do. So many Lyme patients, myself included, struggle and suffer with watching their life from the sidelines. I am so thankful that hopefully this will not be the case for my son. God has BIG PLANS for this kid’s life — despite my own feelings of guilt and inadequacy for possibly transmitting something I had NO KNOWKEDGE OF and absolutely NO CONTROL OVER. Again — surrender.

Lord Jesus, when we answer your call to say yes, we fully surrender it all. When we take up our cross and follow you, we cannot question the sometimes rough parts that we must navigate through in our lives. Lord, help us to understand when we go through rough waters that there are calm waters ahead and vice-versa in preparing for rough waters that will inevitably come when life seems calm and balanced. Amen.

Posted in Healing from Lymes, Lymes and Other Tick-Borne Illnesses

Deep Into “Phase 2: Antibiotics”

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.

http://m.theholyrosary.org/site/maryundoerknots-m?imz_s=cuuuloqjrsh9n4bmml7olig5m4

Posted in Healing from Lymes, Lymes and Other Tick-Borne Illnesses, Thyroid Health and Hashimotos Awareness

End of Phase 1!

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

https://www.amazon.com/Pure-Encapsulations-Magnesium-Glycinate-Physiological/dp/B002HYE2RO/ref=sr_1_1?s=hpc&ie=UTF8&qid=1496758432&sr=1-1-spons&keywords=magnesium%2Bglycinate&th=1

  • 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

https://www.amazon.com/Life-Extension-Mega-Benfotiamine-capsules/dp/B000OSIO9W/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1496758695&sr=1-1&keywords=life+extension+mega+benfotiamine

  • Lipoid Acid: an antioxidant that is essential for aerobic metabolism and turning glucose into energy, also supports heart, nerve, and eye health

https://www.amazon.com/BioTech-Pharmacal-Lipoic-300mg-Count/dp/B00BEG355G/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1496758916&sr=1-1&keywords=bio+tech+lipoic

  • “Brain Gain:” a natural, dietary supplement containing berberine, biotin, folinic acid, hydroxytyrosol, luteolin, olive pomace oil, and selenium… for cognitive function and brain health

https://www.amazon.com/BrainGain-1-Bottle-90-softgels/dp/B00HQNFQL2/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1496759042&sr=1-1&keywords=brain%2Bgain%2Bsupplement&th=1

  • 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

https://www.amazon.com/Nordic-Naturals-ProOmega-Softgels-Lemon/dp/B003XX3W0Q/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1496759187&sr=1-1&keywords=proomega+nordic+naturals

  • HPA Adapt: an herbal blend of rhodiola, ashwaganda, eleuthero, holy basil, and maca, awesome for your thyroid, adrenals, and endocrine system in general

https://www.amazon.com/Integrative-Therapeutics-Capsules-Resistance-Complex/dp/B00JCL3FR8/ref=sr_1_1?ie=UTF8&qid=1496753650&sr=8-1-spons&keywords=hpa+adapt+integrative+therapeutics&psc=1

  • Medi Clay: to detox and bind the gliotoxins in my system

https://www.amazon.com/Premier-Research-Labs-Medi-Clay-FX-capsules/dp/B00CK9CK9S/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1496759622&sr=1-1&keywords=medi+clay

  • Activated Charcoal: to detox and bind the tricothecenes in my system

https://www.amazon.com/Natures-Way-Activated-Charcoal-Capsules/dp/B0006LCQ4Q/ref=sr_1_1?s=hpc&ie=UTF8&qid=1496759710&sr=1-1-spons&keywords=activated%2Bcharcoal&th=1

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):

  1. daily juicing (12-ish ounces every AM)
  2. Daily hydroxocobalamin (B12) subcutaneous injection in hip(s)
  3. Orthobiotics (4 daily, 3 hours away from antibiotics)
  4. Saccharomyces boulardii (2 daily, 3 hours away from antibiotics)
  5. Vitamin C, 2,000 mg (8 daily)
  6. Vitamin D (5-8,000 iU daily)
  7. Magnesium glycinate (4 daily)
  8. Magnesium oxide, as needed (1/2 – 2 tsp. twice daily)
  9. Benfotiamine (B1) (4 daily)
  10. Lipoic acid (2 daily)
  11. Brain Gain (3 daily)
  12. Pro Omega (4 daily)
  13. MediClay (4 daily, 2 hours away from everything else including food and supplements)
  14. Activated Charcoal (2 daily, 2 hours away from everything else including food and supplements)
  15. HPA Adapt (2 daily, before 3 PM)
  16. Zinc (1 daily)
  17. Selenium (1 daily)
  18. D-Hist (9 daily)
  19. L-Theanine (as needed, on empty stomach)
  20. Burbur Pinella tincture (10-20 drops as needed in water for Herx)
  21. 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):

  1. Naturethroid (for Hashimoto’s)
  2. Compounded hydroxocobalamin (B12)
  3. Dr. T’s Nasal Spray (from compounding pharmacy as well, to bind and eliminate mycotoxins)
  4. Nystatin (to combat yeast build-up)
  5. Plaquenil
  6. Doxycycline
  7. Minocycline (sub out for doxy on days I’m in the sun)
  8. Azithromycin (which I ended up having to order through a compounding pharmacy  without lactose)
  9. Mepron

 

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! ❤