Columbia appointment

I woke up at 4:00 am the morning of my appointment. I had such a hard time sleeping. I had so much anxiety about the appointment, about oversleeping, about driving there... I worry way too much over things. But anyway, my appointment went really well. I really liked the doctor. He spent a lot of time talking with me and looking me over. He seemed very knowledgeable about things, I was very impressed. He doesn't like to say the word “Lyme” though. He uses the term Master's disease or Borreliosis. However, when you look up the word Master's disease online – it says that it's the same thing as something called STARI, and the doctor said that this disease is not STARI. If you look up Borreliosis, everything says that it's an infection caused from a bite from a tick that is infected with Lyme bacteria. The technical term he uses in his papers is Borrelia burgdorferi, and when you google it, it says that it is the causative agent of Lyme disease. But, he says that we do not have regular New England Lyme disease here in the midwest, and told me not to mention the word Lyme in front of any other doctor. He is definitely covering his butt on this, because doctors can get in trouble for diagnosing Lyme. It's a really long, complicated reason why...

But anyway, he is almost positive that I have Borreliosis. I brought him my copies of my positive Lyme antibody test and my negative Western Blot test. The first test is a screening test, the second test in a confirmatory test. He told me that when people have positive screening tests but negative confirmatory test, then the patient still typically has it. And he pretty much said that the lab my doctor used is worthless. Western Blot tests often have false negatives, especially when they aren't done at a good lab. He went ahead and did another Western Blot on me – that test will take 3 weeks to come back. I also have most of the symptoms for Lyme. I mean Borreliosis. Ticks often carry more than one disease, so you can easily get other infections as well. The doctor mentioned the possibility of me having Babesia and Bartonella as well, based on my symptoms. He is also pretty sure that I have low metabolism, so he is testing for that. These infections cause low metabolism.

The doctor was looking at my past blood work, and noticed that I had tested high in Copper. He asked if a doctor has ever re-checked that and I told him no. He said that it needs to be checked again because there is a disease called Wilson's disease that prevents the body from getting rid of extra copper. It's a serious disease that can be fatal because the copper builds up in the liver, brain, and other organs. It's not common though – both of your parents have to be a carrier in order for you to get it. He has never ordered a copper test before. Out of 9,000 patients – I'm the only one that has been high in that. I was very impressed he knew about the disease considering he hasn't dealt with it before.

The doctor went ahead and gave me a bunch of prescriptions – 17 to be exact. He wanted to go ahead and start me on antibiotics. I started my first one yesterday, which was Doxy. I'm supposed to take it for approximately 4 weeks and then move on to the next antibiotic. Basically if it's working, stay on it. If I hit a plateau, go on to the next. 4 weeks seems to be the average. The downside is that many people get more sick after starting on antibiotics. When the bacteria start dying, they release toxins that can make your body really sick. This is called herxing. Some of the antibiotics make you herx worse than others. The doctor has some patients that don't herx at all, and there are some that have ended up in the hospital. So I'm a little nervous about that. I will be on different antibiotics for a total of 2 years.

He also prescribed me Nystatin for yeast, because when you're on antibiotics for long periods of time, yeast builds up and causes infections – or something like that. All the information he gave me was so overwhelming. I'm not supposed to start that medicine until I get my Western Blot test back though. He also prescribed me some eye drops. The spots and lines I see in my vision look exactly like the Borreliosis bacteria when it is seen under a microscope. They did some sort of weird eye test on me and it showed I had a lot of toxins in my body. He also prescribed digestive enzymes, vitamin B-12 shots, and I'm supposed to take probiotics, vitamin C, Magnesium, and charcoal pills. My sweet husband went into Walgreens for me and asked for charcoal pills – they had no idea what he was talking about. They probably thought he was crazy. I guess I'll have to order those online. Oh, and I'm supposed to go on a Gluten free diet. And a Sugar free diet. I'm not sure I can do that. That takes away all the good foods! There is nothing left!

Anyway, I'm supposed to go back in 6 months. We had a great time on our little trip. The kids like staying at hotels, and they loved going to Chuck E. Cheese. The pizza there really sucks though. When we were driving through Kansas City on the way home, I saw a store called ½ Price Books – so I made John stop. It was a book lovers paradise. And they had records there so I think John was glad I made him go there.