As most folks already know Kayla was diagnosed with Lyme in July 2013. She was on aggressive abx for 7 weeks and went 6 months with no problems only to relapse again in March of 2014. Then on Memorial Day she broke her ankle so severely it required surgery to fix. Both our LLMD and our PC have no doubt her Lyme disease played a huge part to her breaking her ankle so severely.
A couple months after all this we start noticing behavior changes in Kayla. Of course I attributed it to her stress levels of breaking her ankle and surgery and missing out on a lot of summer play time. Some of the things we noticed were anti social behavior, a desire to always be in a dark room, not liking crowds or noise, especially at church. I would often wonder where she was only to find her on her bunk bed, alone, sitting there in the dark and when I would ask her what she was doing she just said, "I'm thinking". She also always seemed to have a slight rash on her face, mostly her cheeks and forehead. I did find it odd so I asked my LLMD his thoughts, and he showed me his list that he has compiled over the years about bartonella symptoms. Everything Kayla was experiencing was on this list, especially for children. This was in November and so he said let's wait till her last surgery and see what happens, he had suspicions that we would see a manifestation of the bacteria. But he didn't tell me what to look for. Just to keep an eye on her. So in January I had this in the back of my mind as she underwent her last surgery.
When Kayla went through her first surgery her leg was completely covered with many bandages etc so we couldn't see her leg or the incisions. The doctor had to make 3 incisions to insert screws to fix her very broken ankle. But after some time she was allowed to have that big bulky bandaging off and for the first time we saw the incisions. Everything looked pretty good at that point.
At this point we saw no rash or 'allergic reaction',
However this didn't last, as it seems as soon as that leg was now exposed to air and the tape came off, she developed what we thought was prickly rash. It was itchy and burning and very uncomfortable for her.
We watched this rash grow and spread, attacking mainly around her incisions. It oozed and had yellow pus pockets. It took a few weeks but it finally settled down on its own. We tried Benadryl and Benadryl cream to no avail. We didn't think much of it after it went away.
On January 23, 2015 Kayla had to go back into surgery to remove the 3 screws.
Surgery was successful and she did amazing once again.
We were allowed to remove the bandaging after three days which we did with much joy as she hates having a club foot as she called it.
No sooner than the bandages were off and her incisions were exposed to the air she started developing that rash again, but this time it was worse.
We thought maybe it was from the tape so we took her into her orthopedic doctors office and they removed the tape and said it might be an allergic reaction to the Benzoin rub, and to test that theory they applied some of the rub to another area of her leg to see if she would react.....nothing happened. Not even one bump or irritation. They tried prescription strength Benadryl...nothing. Not even relief from her itching. They asked if I wanted to put her on Prednisone but I didn't want to take a chance as I know steroids can lower her immune system.
This rash grew and grew, it was hard as a rock to touch, oozing yellow pus, itchy and burning. She was miserable.
My daughter in law happened to have some steroid cream she uses on her finger and so we tried that and wala! It helped and within two days the rash was almost gone!
I was amazed of course! And so thankful she was now getting much relief from such itching and burning. We were now finally able to end this long journey of this broken ankle.
It was also at this time that I was contacted by a dear sister in Christ who also suffered Lyme and Bartonella after she saw the pictures of Kayla's rash, I had posted them on Facebook to ask advice of something I could do, and this is what she wrote to me:
I just noticed the pictures of Kayla's rash and I had to message you. Before I knew I had Lyme, I knew something was very wrong, but my PC doctor kept wanting to remove moles every time I went in instead of really hearing my concerns. EVERY time, regrettably, that I allowed him to cut into me I got that same nasty, itchy rash! Looking back, I believe it was because of the Lyme bugs in my system.This was eye opening indeed! I couldn't wait to speak to my LLMD.
Kayla seemed to be doing great but she still was struggling with the previous concerns we had of her anti social behavior. It was off and on but now a new symptom appeared. Insomnia. She couldn't sleep, one night she actually came downstairs and cleaned the living room spic and span. I was pleasantly surprised to come downstairs and the house was immaculate! But I realized she was having a hard time sleeping. She couldn't wake up in the mornings from being exhausted from insomnia.
I had my LLMD appointment scheduled for myself, I go see him every 3 months, and so I shared with him Kayla's still existing symptoms of the anti social stuff and now the new symptom of the insomnia. Then without saying anything about her rash possibly being Lyme related I had the pictures on my phone and I asked his opinion and he took one look and said,"oh that is such classic Bartonella! She still is battling the bacteria" Bingo! Thats what I wanted to hear. He looked at each picture and zoomed in on some of them and pointed out the yellow blisters that are so classic bartonella. He asked me if I thought our new primary care would treat Kayla since he is an almost 3 hour drive and my PC is 15 minutes down the road.
I did get Kayla in to our PC and once again I showed the picture and she took one look and without hesitation said, "Oh that's a Lyme rash for sure! She must be treated." Two doctors confirmation, both of course Lyme literate and not afraid to treat chronic Lyme disease which we realize at this point Kayla has. They both also explained in exact same details how the bacteria feeds off oxygen, and that's why as soon as the incisions were exposed to air it manifested itself. Again confirmation. And also they both explained why the steroid cream worked, tricking her immune system and tricking the bug.
So now Kayla is on the same Bartonella treatment as I am using Cefdinir, Minocycline, Plaquenil and Clarythromicin. Since she has began treatment the rashes on her face have cleared up immensely but she has also had the classic herx with fatigue, brain pressure and headache and GI tract issues. We are hoping it passes soon.
Wow, that was a lot! Did you make it down here yet? lol...
I hope someone finds this information helpful. If you have any questions and want to get in touch with me please feel free to email me or leave a comment here. I want this information to be helpful as I wish I had known this so that we didn't let it go so long.
As always we thank the Lord for giving us now two doctors that are treating both Kayla and I and we also know He guided my friend to message me and then to find a PC who is Lyme literate and always thankful for our LLMD!
To God be the glory!
The Valley of Vision
Lord, high and holy, meek and lowly, Thou hast brought me to the valley of vision, where I live in the depths but see Thee in the heights; hemmed in by mountains of sin I behold Thy glory. Let me learn by paradox that the way down is the way up, that to be low is to be high, that the broken heart is the healed heart, that the contrite spirit is the rejoicing spirit, that the repenting soul is the victorious soul, that to have nothing is to possess all, that to bear the cross is to wear the crown, that to give is to receive, that the valley is the place of vision. Lord, in the daytime stars can be seen from deepest wells, and the deeper the wells the brighter Thy stars shine; let me find Thy light in my darkness, Thy life in my death, Thy joy in my sorrow, Thy grace in my sin, Thy riches in my poverty, Thy glory in my valley.
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