Today is day 39 for Thomas using the Cowden Approach for treating Lyme Disease. Originally we were to be working up to 15 drops of the main "killers". We made it to 12. Today we traveled to Thomas' doctor in Indiana for a quick blood and urine test to evaluate how the treatment was going. Overall this approach hasn't been horrible. Thomas has had many "good days" where he plays and the pain doesn't overwhelm him. Then there are the bad days, the days that are so mentally, physically and emotionally exhausting as a parent. The days when he lays around in pain. His legs will ache, his neck will be miserable and his head will pound. It's a blessing when he falls asleep as it passes the day more quickly. Last Saturday was one of those days. It really started Friday evening with pain that didn't allow him to stay asleep thus multiple tuck in's were needed then on Saturday all his symptoms were in full force. I spent much of the day rubbing his back and neck, trying oils and alternating between heat and ice. Sunday dawned and his symptoms had decreased enough to even take him with his siblings to the beach for a few hours. He didn't swim but he did play in the sand a bit and enjoyed a picnic dinner. We even got in a short hike. Lyme is ridiculous in its ups and downs. Its one of the hardest parts to explain to friends and family too. He can be fine one day and not the next or even one morning and not that afternoon. I mentioned to the doctor today that he had had some good days but then there were the bad days. He reassured me that this was completely normal with Lyme. Symptoms come and go thus why diagnosing is initially so tricky. He also noted that it is hard because some people will observe the child happy and playing one day and sad and quiet the next and think depression or that the child is being spoiled. The truth is the symptoms come and go and some days it's all he can do to put one foot in front of the other because the pain is constant. Some days he can't read and other days he might be able to devour a whole book. It's frustrating to say the least. I am every so thankful for faithful friends and family who hold our family in prayer and are there for me to lay my fears out to. I am blessed with friends who point me back to Jesus and his everlasting love and care when the doubts and tears come.
So the good news today was that his blood sample did not have the spirochetes. It did have the bacteria in the cyst form which is what makes Lyme so tricky to treat as you may recall from my other posts. Lyme can be a worm like spirochete freely swimming around attacking everything but it can also go into cyst form and hide. Then it comes out when conditions are more favorable. There weren't many cysts which is great news however with chronic Lyme it gets into the deep muscle tissue thus causing Thomas's symptoms still. He needs to go stronger on the killers and some of the other support drops. We are to work up to 30 drops of each kind potentially at a quicker rate that the increase every 3 days that we had been doing. It will make him feel bad until it is all killed off. He's likely to have some cognitive issues to as Lyme crosses the blood brain barrier causing more problems. The urine test showed that I was actually giving him too much water- poor kid. I followed the directions in the book not taking into account his size and that that would be for an adult so now he only has to have 50 oz a day and he drinks it a little bit every 30 minutes. That will be so much nicer for play-dates not to have to interrupt him every 15 minutes. The doctor was confident though that we should start to see his hair grow back. He's lost quite a bit including several patches on his legs. He had low enzymes and protein linkage which is a digesting issue but his liver was functioning much better. He had no yeast this time and only a few protoplasts. The other good news is that his minerals were up so the lower dose 4 times a day seems to be helping that.
We will keep fighting this battle. Every night we still repeat " You are brave, You are Strong, You will Overcome!" Then we add something like you are a warrior who...... and fill it in with something fun or silly he did that day.
Our cupboard is overflowing with the supplements and pills. Its a job to keep it all straight. I am thankful for the printed book that comes with the program but I have to go through and change the dosing numbers based on what the doctor recommends so it can be time consuming. Everything has to be mixed in a certain way and then it has to sit for some long. The drops can only be mixed into spring water.
We venture south again to the doctor on August 15th. Please pray with us that this approach will win this battle once and for all!
