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dani@beautyfullmess.com - March 2, 2017

Update & Prayers Needed!

dani@beautyfullmess.com - March 2, 2017

What is Babesia? Where is my Ferretin?

dani@beautyfullmess.com - March 2, 2017

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.

IMG_0126 IMG_0029Needless 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.

 

4 comments

  1. Praying our Jehovah-Rapha sends the wicked Lyme & Babesia back to where they belong today!!! I feel your pain….heaven is going to be so amazingly glorious after the suffering of these wicked diseases…keep hoping, believing, hanging onto Jesus, dear sister…HE will never, no never, let you go!!! HE HAS YOU!!! His promises are all yes & amen….His banner over you is LOVE!!!! Lament. 3:22-23 is my heart’s cry for you&dear ohana…

    1. Amen my sweet new friend and fellow fighter Katie! We are praying for healing in your body and your whole family too! XO, Danielle

  2. Hi Dani,
    Thank you for sharing your testimony. I have had Lyme disease for twenty years next month, and I was diagnosed three years ago. Symptoms of babesiosis were the first to show for me, and were such strange symptoms and therefore easily misdiagnosed. I became sicker instead of getting treated with the right treatment. I just pushed ahead, the best I could–you know the feeling…I’ve been down so many roads now.

    I, too, received infusions of ferritin before I was properly diagnosed, and the first one felt like a lifesaver. I thought I was going to exit the world before that. Anyhow…Some treatments I have tried have not been helpful, and indeed, could have been harmful to me. I would love a chance to talk to another patient about treatments, because I am exhausted and very sick, having more seizures than ever, and episodes of choking and stiffening up like a board if wood in many places of my body at once, and I’m pretty sure that there are critical pieces of the picture still way out of focus or these things would begin to let up.

    I’m not seeking advice, but I’m always happy to share what I’m doing, the things that have positive implications in my experience, and I also like to consider how others fare on their treatment plans. I have a GP and a LLND I consult. I use a combo of conventional treatment and natural. But, it isn’t looking like I’m going to get better. In this last year the neurological symptoms have ratcheted up. I know that indicates I’m still overlooking some important factor/s in my case. I am now of the mind that I help myself more by being honest about what I really think, instead of trying to hide my fear behind false hope. But I know I can hope that an unforeseen help could arrive at anytime, and I keep on looking ahead for such a chance.

    Other members of my family have infections, too, but I am the one that has succumbed the most, I have had it the longest. It frightens me mercilessly to think of one of them facing what I face. I have found the limit of my endurance for burden time and time again. Of course, each time there is a breakthrough. But I never really know if there will be another breakthrough, or how well I may mend to prepare for the next test of endurance.

    A sister from church learned of your family’s testimony and gave your info to my husband.

    So, your family is now in our prayers, and we send our best hopes and wishes along with this message!

    In Christ’s love, Tracy Carter

    1. Dearest Tracy! I literally just now finished praying for you… it breaks my heart to hear all of this. I will continue to pray for you continually and I MEAN it! Please feel free to email me:dani@beautyfullmess.com or you can call/ text me at 541-350-6976 We are currently Hawaii time and I would love to compare notes and encourage one another! XO, Danielle

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