On the morning of March 16th Stephen and I made our way to the Jemsek Clinic in Washington DC for my first visit. Everyone we saw was incredibly kind and the best part of going to a clinic where they specialize in Lyme Disease is that they really know how this Disease can affect a person; I was offered assistance for every move they asked me to make – they already knew what was going to be difficult and were prepared to help me right away. It truly makes you feel comfortable and at ease when someone sympathizes so well with your symptoms because they have such a good understanding of this disease.
At the end of the PA’s assessment she left the room. A few moments later I thought I heard Dr. Jemsek’s voice in the hallway – and before I had the chance to tell Stephen I thought it was him, he opened the office door and came in. Now, this may sound silly – but to me it was almost like a celebrity sighting. He is one of the well known LLMDs (Lyme Literate Medical Doctors). In the field of Lyme disease – he kind of is a celebrity (click here to read more about him). My excitement turned to reality when he sat down and looked at me and said “you are really sick”, he told us by the time most people get to his office they aren’t in this bad of shape. To be completely honest; despite the horrid symptoms that I have, I truly thought I was doing well still. I suppose being an optimist might have led me to this false reality, but if I had to create a false reality for myself, I would rather it be a happy one vs. one filled with doom and gloom.
I’ll try to keep the conclusions of the visit brief:
Dr. Jemsek explained that although we know I have Lyme and Bartonella (this was shown in my lab work done through Igenex) it is possible that the tick could have transmitted other bacteria or viruses. Additional tests are going to be done for some of these, including Babesiaand Mycoplasma. When co-infections are involved it further complicates the the illness and the treatment.
My body is constantly “on fire”, and we need to address this before we can start my treatment. My body needs to be able to cope with treatment, once we introduce antibiotics we run into the possibility of “herxing” which I’ll probably write about another time if, or after I’ve experienced it. Until then you can read about it by clicking here.
My neurological symptoms have been getting worse so I’ll be taking meds to calm down my nervous system. These meds should address the extreme twitches and spasms and help to reduce the neurological pain. The bacteria have “hi-jacked” my brain, possibly causing damage to nerve areas.
Lyme can also affect the organs, therefor it is important to check and monitor function of the liver, gall bladder, etc. These things can be monitored with lab work, and certain diagnostic imaging.
Some of my symptoms can be explained by autonomic dysfunction, this means my autonomic nervous system (ANS)– the part that controls the ‘automatic’ things we do isn’t functioning properly. This can be thought of as the reptilian brain, the ‘non-thinking’ brain. It is involved in regulating blood pressure, heart rate, sweating, digestion of food. The ANS is what communicates to our organs as well. It is basically in control of everything our body does without us having to think about doing. POTS also explains some of my symptoms; this stands for postural orthostatic tachycardia syndrome. It is when the heart rate increases without much of a change in blood pressure when a person stands. It is difficult to explain; but perhaps the symptoms might make it easier to understand: light-headedness, palpitations, shaking when standing, discomfort in the head or neck, tiredness, weakness, nausea, chest discomfort, shortness of breath.
Our plan of action is to have labs drawn that will determine metabolic, immunologic, endocrine and nutritional status as well as complete some diagnostic imaging studies. Thorough investigations and ‘work-ups’ need to be done by my primary physician before moving forward. Based on the lab work we will address any deficiencies or excesses found; Lyme basically messes up a lot of the body’s pathways and functions, therefore causing deficiencies or excesses.
So, the immediate plan is to have all of these tests done to help us decide what steps to take next, at the same time we want to calm my body down (my markers of inflammation have been high for longer than I can remember) as well as get my immune system ready to fight even harder before we move forward. I do my best to keep these short; I just summarized a 5 page doctors report into 2; so I think I did well. Also note – everything in red is a link for you to click on for more info.
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