Petra's Battle with Lyme Disease
Fall of 2011 our Petra was an eager, happy college freshman ready to jump at every opportunity that came her way. Sadly, soon into her school year she began having unusual neurological symptoms. As the months went by other concerning symptoms were added. We quickly began a mission of many doctor appointments. Symptoms subsided in the summer, but her sophomore year began with symptoms reoccurring. By Christmas break, Petra was disturbingly ill. We were very concerned and baffled. Every evaluation and labs were deemed normal.
In December when Petra arrived home from college, she lay on the couch and was too weak to get up as each day passed. She was having odd seizure like activity, body pain, and a host of other symptoms. She could not return to school. By February she was struggling to walk and needed a wheelchair for transfer. She was now couch ridden, 24/7. I was spending hours doing research and soon became convinced that Petra had Lyme Disease. We then recalled a tick bite that had been symptomatic. We found one of the most reputable N. Ca doctors that specialized in Lyme Disease and made an appointment. Clinically she was diagnosed with Lyme as well as positive testing with Igenex and the Western Blot. This became our introduction to the great controversy of Chronic Lyme. It was not recognized by The Center for Disease Control, therefore there was no approved protocol for treatment. Sadly, this meant insurance would not cover her needed treatments.
Petra continued to rapidly decline. Her body was extremely sensitive to all treatments we tried. We had to move at a snail’s pace. She became extremely sensitive to light, sound, and movement, and had to be confined to her room with the door closed and blinds down, only dim light. She remained too weak to walk or talk and body pain was always at level 8-10. Searing migraines continually. She battled with seizures that came at random, but were also provoked by sound and movement and these can provoke full body paralysis. This meant that only her mom could walk into her room and only very briefly. This is currently Petra’s condition today, although, thankfully, she is having less seizures. Watching this illness has been incomprehensible and our hearts have been broken over her suffering.
Oddly, and at random, Petra will have what we call a lifting. These “liftings” may last only an hour, sometimes a partial day, and at times a full day. Suddenly, her symptoms will drop by around 40%. Her doctor does not understand this phenomenon. We treasure these “liftings” when Petra has some relief from symptoms. This is when her sister and brothers will be able to go in and visit with her, and a friend can come over and sit on her bed with her. She will laugh and talk. But, very sadly, it typically takes 3-4 months before she has any lifting at all. This gives you a picture of how great and long her suffering is and has been.
In the recent two months we have had two dear friends tirelessly advocating for Petra. They are currently doing everything possible to find help. We have learned of a doctor/advocate that takes very difficult illnesses/cases and he has a research team. We are in the middle of the process of hoping he will take Petra’s case. We have another new doctor, and coordination happening between doctors. I have boxes of tests on my desk waiting for blood draws, and new findings from her current doctor with new things to try. Sadly, none of this is insurance covered. My dear friend/advocate is shouting from the rooftops with hopes to find help for Petra.
I will end this story with something personal to share about our daughter. As her caretaker and mother, I love my girl with all my heart. I have never know anyone who has had to endure such great illness with severity and longevity. Petra has battled valiantly. She has feared greatly at times, and wept deeply. She has told me of a depth of sorrow that I cannot even know, but only feel for her. What amazes me most is her continual love for me as I care for her, and that I see no bitterness of soul, nor anger towards God. Jesus has been faithful to carry her through each day, and she has told me that even in the darkest hours...He is with her.
Nanette & Marty
We have temporarily moved Petra to a little mountain home that we found on Airbnb. It's about a 45 minute journey from our home and commute for Marty. We arrived a week ago. She initially had a good arrival, feeling stronger, and the first few days her improvement was better than at home. The smoke from the fires here is faint but I smell it and see a bit of haze and wonder if it's taxing on her body? It is quieter here and very few planes overhead, but there is a road up above us making it too loud for an open window during the day. Yesterday PG&E stopped by and they wanted to take down the huge tall dead pine tree in the back. Yikes...chainsaws! I pleaded they wait until we leave. They will. :)
We are still awaiting MCAS test results.
Marty and I are praying and trying to decide what to do next. As I mentioned in my last post, we would really like to try to follow the mold avoidance plan that has been successful with others. The idea is a climate where the mold is at the lowest, air is clean, and going away from cities and agriculture sprays. It is believed by many that those who suffer from chronic illness like Lyme & ME/CFS...that their immune system, within it's great fight, also becomes burdened by many environmental factors. Many say when they remove these factors, they start to feel better. Knowing that she must still fight Lyme, she would be very grateful to experience some of the "feel better" and it would enable her to accomplish other treatments.
So, we are very seriously considering doing this soon. The MA plan says to ideally start in a tent! We cannot do this with Petra, but we do know of a trailer that would be perfect for her and she likes the idea. Marty & I would tent and/or sleep in the van. The desert rates very well, but also the coast with the ocean breeze rates well. The ocean has always been Petra's favorite place so it makes our hearts happy to think of starting there. I'd love to find a location where she could see the ocean from her window.
We always ask God to show us what He wants us to do because we believe He is our Savior and Lord and our lives belong to Him and we know that He loves Petra. We are prayerfully moving forward.
What we need ever so much right now are your prayers. The last week plus Petra's symptoms have escalated. Also, at the same time we are having great difficulty with her local health care providers and finding someone in "the system" to speak on her behalf, with decision making authority, to help her with an urgent need. Please pray that this will be accomplished very soon and a smooth transition will take place.
I am in process of seeking another private local doctor that we have learned of that makes home visits! THIS would be just what we need and have been trying to find for quite sometime. Plz pray he will say, "Yes." to adding Petra as his patient. I may ( hopefully ) will be talking to him today.
Last Friday Marty and I drove to Santa Rosa to have an appointment with her doctor there. He always spends a lot of time with us carefully explaining and going over all questions and new things to try. Our date for the first consult with a doctor in San Francisco ( I mentioned in an earlier post ) that we are awaiting anxiously is now coming closer. March 28th. Although we had hoped to hasten this appointment...instead we need to wait. :(
On this Valentine's Day of love...I am reminded of The Greatest Love. He, that gave His life for us, that we might live and have a home with Him forever. Jesus.
I was brought to tears reading this, and only thought how every time I saw Hannah I didn't see any pain and it just proves that you never know what somebody is going through. I want you to know that I will do my best to share your story and to have people all around know what your beautiful daughter is dealing with. My heart and my prayers are with you as the parents and siblings and Petra herself. And I agree in order to not have any bitterness, she has the Heart of God
Have you heard of ozone therapy? A friend of ours has Chronic Lyme Disease and that's what worked for her. She is now healthy and happily married! Praying for Petra and the family!