About a week ago I traveled to see a new lyme doc. I have heard for a long time that he is amazing and the top lyme doc in my area, so got on his waiting list. Took 9 months to get in but his current wait list is 14 months so I was lucky to get in within a 9 month wait time. The doc was great, he really took the time to listen to my history, questions, comments and concerns. He did a great job explaining things and his staff was fantastic. The nurse also did a great job explaining all the strange tests she was giving me. They seem pretty up to date with the testing etc they were doing and I found it pretty interesting. Lets see if I can remember everything--
When I got there the nurse gave me some tests I have never heard of or had before. The Bioelectrical Impendence Analysis and Phase Angle and Cardio Wave Analyzer.
Phase Angle is a calculation of 2 electrical properties, reactance and resistance, on a cellular level. Phase angle is an indicator of membrane integrity and water distribution in and around the cells in our body. It tells us how well our cells are performing. Surprisingly, I did well in this test and my cells are working well in my body currently.
For the Bioelectrical Impendence test I was hooked up to electrodes to measure body composition, fluids distribution, body fat, body mass, etc . It measures the resistance of the body tissue.He didn't end up going over these results with me so I am not sure where I stand with this one and no clue what the results mean on the print off. I may have to do some research on this one or just ask next time I am in. It basically just gives him a measure on how well my body is handling my current health state and will help give a comparison when I start treatments etc.
Cardio Wave Analyzer. This tests Digital pulse wave analysis, Heart rate variability and The autonomic nervous system, Sympathetic nervous system Parasympathetic nervous system and Accelerated vascular.
When doc came in we went over my whole history, I tried to remember everything since all my records didn't6+ come in time for some reason. Hope I hit all the important points, its hard to remember 9 years worth of medical problems. He asked a lot of questions and I thought it seemed really up to date in the field and very knowledgeable. Its pretty clear that both lyme and babesia are back full force. He checked my hands and feet with this vibration tool. My hands did really well and I have good sensation and no loss of feeling but my feet are showing some damage, I couldn't feel the vibration for as long or as strong in the feet vs hands. Right foot seems to have more damage than the left. He also said he saw arthritis in my front collar bone by just visually looking at it, one side sticks out more than the other. Hands have Rheumatoid Arthritis, he also said my hands have Swan Neck Deformity, which I have never heard of before. I looked it up and the definition--is a deformed position of the finger, in which the joint closest to the fingertip is permanently bent toward the palm while the nearest joint to the palm is bent away from it-- is exactly how my hands look. I hope my hands don't get worse because those photos on the web are disturbing!! Never google haha! He also did a brain assessment screener test-9 and above is severe...I tested at a 23. Which basically means my body is constantly in the Flight or Fight stage and why I have trouble with anxiety and lines up with Babesia always raking havoc on the brain and function of the brain. Aka-my brain and autonomic nervous system are a hot mess and all over the place. The plan moving forward--
They took 6 vials of blood to run an immune panel, and new patient panel to monitor health markers.
I will be re-tested via I-genex testing in CA. They are the gold standard in lyme testing. Their comprehensive lyme panel looks for lyme disease from several points of view. This test will include an immunofluoresence assay, western blot testing and PCR testing. An immunofluoressence assay is looking for IgG, IgM, and IgA to lyme disease. The western blot looks for antibodies of IgM or IgG to specific parts of the lyme bug, and PCR searches for DNA of the lyme bug. While no test is perfect this is an excellent first step in the laboratory diagnoses of lyme disease. If we can prove lyme and get a CDC positive it really helps lyme cases and getting insurance to cover medications, testing, and the general medical world to take you serious. It also really helps your case if you were to apply for disability. Any good lyme doc out there will not just go off of labs, it also has to be a clinical diagnoses. Testing is just not accurate enough bc those darn bugs and spirochetes can dig so deep in your body.
I have to come back two separate times for more testing. These tests are called Evoke. Evoke EEG and CNS vital signs. They can not be done on the same day so have to go back twice for this. The evoke test is a neurocognitive test but also measures a wide variety of my underlying neuro-endocrine physiology. It is a sensitive measure of my autonomic nervous system balance. It is the autonomic system that is the interface between your brain and your endocrine and immune systems. It also measures and maps your brain waves, which help them understand how my brain is operating and how it is responding to stress. It also gives indication of GI health. mitochondrial health and certain chronic infections.
The treatment plan- Since its clear things are back full force, I had done many years of oral antibiotics, bicillin injections and responded the best to IV treatments via picc line, he is ordering another picc line placement. I have mixed feelings but I know my body will respond best to this sort of treatment. My only worry is I will herx a lot. Last time I had my picc line placed, I was warned by many to brace myself bc I am in for a hell of a ride with such powerful drugs being pumped into me twice a day. But, I felt amazing. This time around my body isn't going from years of orals and then straight to a picc line....so the herxing could get rough. But, I am hoping it makes me feel good again vs sick. As long as we can get insurance to covered it that's the plan and he wants to do this soon. The clinic is contacting a couple infusion companies and they will contact me to get rolling. He wont say how long the picc line will be placed for because it just depends on how my body does with the treatments but its a minimum of 6 months. In addition to IV treatments I will also be doing a bunch of supplements again. I also will start a very high dose of stevia, a special kind. This particular dosing and kind is known for killing off lyme. Also on the list is to start HBOT--Hyperbaric oxygen treatments. NOT excited for this one, I am claustrophobic and being locked into a small chamber and being pumped with oxygen doesnt sound fun to me one bit. It has to be a special kind and luckily there is one not too far from my house. HBOT is a way to increase the amount of oxygen in your tissues. Studies have shown that HBOT can imprive all of the key physiologic areas of the functional medicine matrix. This included the GI barrier function and altering the gut microbiom. HBOT can kill certain pathogens, decrease inflammation, and improve the activity of white blood cells. It can improve mitochondrial function thus improving the conversion of fluid in the energy. Bio transformation/detoxification can be enhanced by HBOT. It has also been shown to increase the sensitivity to messenger molecules such as nitric oxide and certain growth factors. It has also been shown to release your own stem cells. I have many friends who have done HBOT.
Since originally writing this I have an update on the picc placement. I will thankfully be using the same infusion company as last time and even my same nurse for my home care! They are such a great company to work with. I will be getting the picc line placed next Tuesday, 3/1/16. I am hoping they get it on the first try and it's not as tricky as last time. Once it's in I can't feel it and it is pretty easy to use. Here we go, hope its not a rough ride!!