Pushing on and going forward...

So we’ve got a new treatment plan. My symptoms flared while I was off the IV antibiotics. We knew that I needed to get back on them but we weren’t sure which one would work best for me. During this time God led me to talk to M about our being more active in creating a treatment regimen for me. We both started to research more and more about Lyme, Bartonella, Babesia, and other co-infections. While my doctor in Kansas City thought the Babesia was the likely culprit of my seizures, our research pointed us in a different direction. Lyme and Bartonella both attack the brain. They wreak havoc on the central and peripheral nervous systems. Bartonella in particular can cause seizures. This made more sense to us because my seizures never went away when I was treating the Babesia. We ordered a book that included treatment plans of 13 Lyme literate physicians. They discussed everything from proper antibiotic treatments to supplements to diet plans. We began to see a pattern in their treatment protocols. Then I told M we should really look into the treatment protocol of Dr. Burrascano who is considered one of the 3 pioneers in research of these diseases. He helped found the International Lyme and Associated Diseases Society. He’s also the author of the group’s treatment guidelines which he first wrote in 1984 and has updated 16 times to include the latest research findings. M and I both poured ourselves into research. Through Dr. Burrascano’s guidelines we found the two antibiotics he prefers to use in treating Bartonella but I’ve had serious side effects on one of them and the other is an antibiotic I had a slight allergic reaction to the oral form so we didn’t want to chance that with the IV form. We then went back to the drawing board and found that he uses Vancomycin when other IV antibiotics can’t be used. Vancomycin is a great antibiotic to fight infections but has a high level of toxicity and therefore is a “last resort” for some patients. We decided that it would be the best drug for me to use and in order to keep the level of toxins down we planned to do “pulse therapy”. Pulse therapy is when you do IV antibiotics for 4 days of the week and then IV fluids for the remaining 3 days to help rid the body of toxins. We had discussed with my doctor that we wanted to research some treatment options and then discuss them with him to hear his thoughts. He talked with M at length and agreed that while Vancomycin does have risks, my situation warrants taking those risks.

Having the antibiotic plan down we then researched supplements and diet plans that other Lyme doctors use. I’m now taking a Vitamin B complex, Vitamin D, and Vitamin K. I’m also taking an Iron plus protein pill to help keep my red blood cell count up. I take Iodoral to help my thyroid and Curcumin to help with cognition, memory, and to help inflammation. Then there’s an Omega 3 combination pill to help with heart health and inflammation. Finally, there are 2 different herbal drops taken orally which help the body get rid of neurotoxins. A buildup of neurotoxins can cause seizures so the drops are especially important. As for the diet, well, it stinks as most diet plans do I guess. However, it’s been proven that patients who are strict about taking their supplements and following the diet plan along with the antibiotic therapy have much more success at regaining their health and they do it at a faster rate so I’m trying my best. The diet is yeast free, glueten free (free of wheat), and free of refined sugars and corn syrups – which basically leaves me with meat, chicken, eggs, vegetables and a few fruits! The problem comes from my body being so out of whack with all of the diseases that I actually gag and have to force myself to eat those things. I can hardly stand red meat anymore and chicken isn’t great either. I love vegetables and fruit but they don’t fill you up. I was on a yeast free diet for a year before going to Kansas City and I was very strict about it but I was also able to go to Whole Foods and find a lot of the items I could eat and I was cooking the meals. Since I can’t do those things anymore poor M ends up having to do it all. My mom will cook whatever we ask her to but most of the dishes are best served freshly cooked and we don’t want her having to come over every night and cook dinner for us! We’re going to find a way to do all of this the best we can.

I started the Vancomycin this past Monday and did great on it until the end. I ended up turning red from the chest up. I was flushed, looked like I had a sunburn, and my lips and cheeks were numb. It’s a side effect only seen in patients taking Vancomycin and they call it “Red Man Syndrome”. It can be controlled with IV Benadryl, which I had taken at the beginning of treatment and again halfway through. I was worried that this side effect would mean the doctor would take me off of Vancomycin. I told M that 47% of people who use the drug have this side effect and sometimes it only occurs with the first dose. The doctor agreed I could stay on the drug but that I should only do one treatment daily for the first week and then try our plan of twice daily treatments. I didn’t have the reaction again so I will start the twice daily treatments on Monday. The drug has to be given 12 hours apart so that means I’ll be taking it from 6-9 a.m and 6-9 p.m. Those aren’t my ideal times, but we have to do what we have to do. Our motto for the past year has been, “It is what it is.” and it’s true once again.

God has been with me in so many ways over the past few weeks. I know He is always with me, but there are times when His presence is so overwhelming that you simply can’t mistake it for anything else. I want to write more about the things He’s done and the things He is doing in my life but haven’t yet found a way to describe it all. I pray that He will help me find the words to share it all in the coming week. The hard thing about going back on the antibiotics is that the drugs make it difficult for me to think and write very well. I’m hoping that doing twice daily fluids Fridays through Sundays will help me to feel well enough to keep writing. God will allow me to write when He’s ready for me to do so. I just get impatient about sharing what He’s doing but He’s the one who leads me in what to say. Since I can’t find the words yet I think He’s telling me to wait. I can say that some of my symptoms are already going away with just 4 days of antibiotic therapy. That’s good news but as I start twice daily treatments I will likely deal with a lot of side effects from killing off the bacteria. I’ve said before that this treatment is somewhat like chemotherapy in that you feel horrible when you’re on treatment but you go through it to feel better. I even had a woman comment on one of my posts who had been through chemo and she said my treatment sounded a lot like what she went through and she was sweet enough to say she would be praying for me. It’s a weird treatment because while some of my symptoms flare when I’m off the antibiotics others will flare when I’m on antibiotics. Once again, it is what it is.

I want to thank everyone for their support and prayers as I go into my 14th month of treatment. I knew this wouldn’t be a “quick fix” and that it would likely take 2-3 years to “get my life back” but I had no idea how hard it would be. I didn’t mind the time frame but I was ignorant of how that time would be spent and what physical trials awaited me! I want to also say that M and I know that God led us to the proper research materials and gave us the wisdom to come up with a treatment protocol we believe to be best for me. We know without His help none of this would be possible. These aren’t easy times but we feel that God is working in our lives more now than ever before. We know that He has a plan for us and we believe that plan includes my healing. Things are difficult for both of us but we trust in God’s plan for our lives and pray only that His will be done in our lives. That’s the best any of us can do isn’t it? Just to trust God, humble ourselves before Him, and pray that His will always be done in our lives. Again, thank you all for your prayers because we truly think they are what hold us together some days!

Here are a few verses that I’ve seen on my calendar and felt were very fitting for my situation:

“I lift my eyes up to the hills – from where will my help come? My help comes from the Lord, who made heaven and earth.” Psalm 121:1-2 (NRSV)

“He will yet fill your mouth with laughter and your lips with shouts of joy.” Job 8:21 (NIV)

“For he will command his angels concerning you to guard you in all your ways.” Psalm 91:11 (NIV)

Much love-
K