I wanted to share some of the WHY behind the Babesia that I am fighting tonight. Babesia is one of the co-infections that the same ticks that gave me Lyme Disease have given to me as well. Many of you have asked why I am always so tired or weak and fatigued… I know it seems like it should have a simple answer, but it is quite convoluted… so here it is!
I am extremely LOW in ferretin (ferretin is a blood-cell protein that is in your iron). I have had severely low ferretin for about 7 years that we know of and I would routinely go to a specialist to receive six very painful infusions over the course of two weeks. I would have to repeat this course about every 3-5 months depending on how quickly my ferretin would go from a level of about 450 down to single digits. No doctors or specialists, nor Cory and I could ever figure out why my ferretin would disappear so rapidly and without a trace of losing abnormal amounts of blood. I would cook on a cast iron skillet, eat loads of all the “high-in-iron” foods, I would take supplements, etc… no matter what I did… my ferretin would literally disappear. This cost us about a gazillion dollars and without insurance coverage was a HUGE stress for years of this treatment with no knowledge of the WHY!
Soooooo… fast forward to fall of 2016 and I was again receiving insanely painful, but supposed to be safer than ferretin infusions: ferretin injections. These injections were much, much more cost effective, but even more painful, they stained my skin like tattoos on my honey. I have what now look like large ugly bruises and to this day, they hurt quite badly. These injections were only able to raise my ferretin levels a few points even while doing them at least two times each week. I would alternate sides of my buns to have these huge needles used on each day and we PRAYED for helpful results.
Throughout all of these years of infusions and injections, Cory and I never stopped looking for the REASON for my ferretin loss… I searched each and every way I could think of. One day, last fall, my doctor used the phrase: “What is sequestering your ferretin?”… I literally wrote it down in his office and I searched using that exact phrase and what I found confirmed not only what was sequestering my ferretin, but also that I had Chronic Lyme Disease. You see, what I found with that searched phrase was that Babesia which is a co-infection of Lyme Disease literally solely feeds on ferretin. This was ground breaking and literally the biggest day of my medical history to date as we had seriously suspected for sooooooo long that I had Lyme Disease. Each doctor throughout the last 25 years that I had seen and my parents or Cory or myself had asked to test me for Lyme had always told me that it was not possible to contract Lyme Disease on the West Coast. Some even went further to say that they did not believe in Lyme and even if I tested positive for it… they would NOT treat me for it because it does NOT exist.
I knew I had found the answer to sooooo much and I also had a doctor who listened the next day when I called with my heart racing out of my chest!!! Praise God for that silly searched phrase… I will never ever ever forget that feeling of relief, fright, and to be quite honest another wave of pure frustration with all the doctors who wrote me off for years or who were so closed minded that they weren’t willing to look outside the box and HELP me.
Needless to say… we immediately stopped all of my infusions and injections of ferretin. Each time I would receive these treatments I was literally feeding the very thing that was plaguing my body in horrendous ways. The very babesia disease that was causing seizures, pain, severe fatigue, weakness, sleeplessness, etc… was growing into a HUGE, and strong army inside me and was wrecking me more and more each day. When your ferretin gets as low as mine you are incredibly weak, you are fatigued beyond imagination, you cannot think clearly, you cannot hold a thought, you have no memory, and even though you are soooo tired and weak, you cannot sleep. It feels like you are dying from the inside. I have told countless doctors, my husband, and my parents often that “I was dying from the inside” and that “my organs were slowing down or felt like they were being suppressed”. These are direct feelings from the low ferretin and the babesia.
Soooooo… I hope that all of this explanation helps to explain why when I say that I have low ferretin and friends recommend I just take this supplement or go get that injection… this is my why I cannot. Trust me, if there was anything simple or complex I could do… I would! Right now, I am killing off the babesia with very strong medicines multiple times each day. I am having blood draws to stay on top of my ferretin levels as if the levels become an emergency, I will have to get infusions of ferretin even at the cost of feeding these little devils. I am also continuing to detox like crazy to remove the dead disease and the toxins that it brings with it.
Thank you for letting me explain another part of this super duper complex disease to you. Please continue to pray for complete healing for all five of us! We are pressing on and are committed to “Live It Out”… but we are feeling quite discouraged lately.
XO
Sincerely, Dani
Psalm 147:3 He heals the brokenhearted and binds up their wounds.
Psalm 55:22 Cast your burden on the Lord, and He will sustain you; He will never permit the righteous to be moved.
Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with My righteous right hand.
Isaiah 40:31 But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.