Valentines Day

I went to my new cardiologist on February 8. I told him my symptoms and I think he actually listened. He is doing a heart catheterization on me February 14. Happy Valentines Day to me! After having Lyme disease for 14 years and reading all of the research I can get my hands on, I believe I have Lyme carditis. It is rare, but what isn’t with this disease? I also believe the stem cell replacement I had has exacerbated my Lyme. I recently read that stem cells do no good unless you get rid of the bacterias from Lyme first. Like all of the other treatments I’ve had, I have felt better for a period of time, just to wind up falling right back down the rabbit hole. I have six different diseases from two tick bites (I also had two bullseye rashes, one under my left breast, 9″ in diameter and one on my butt, 6″ in diameter). In addition to Lyme disease, I have Borrelia miyamotoi infection, Ehrlichiosis. Babesiosis, Hashimotos, and TBRF (tick Bourne relapsing fever). My fever, at one point, reached 107.1. If Henry had not immediately packed me down in ice, I probably wouldn’t be writing this. I sometimes run a low grade fever for days, with it reoccurring often.

My reason for the cardiac visit is because I’m gasping for breath after walking 20 feet and it feels like an elephant is standing on my chest. I already know that Lyme thickens the blood, but it also thickens heart valves and the different bacterias cause heart artery blockage and irregular heart rhythm. The problem is most cardiologist know nothing about Lyme and certainly not Lyme carditis. If they find blockage and stint it or my aortic valve is replaced (this was one concern when I went on the 8th), that’s all fine and good, but it still does not stop heart carditis. The bacteria is still there damaging my heart. One alternative is a pacemaker, another is a heart transplant, but, again, bacteria is still rampant. My biggest fear is that they will find nothing and I will live this way for the rest of my life, until the bacteria kills me, which might be better than living this way. I go back and forth about that. Another test I will have is an oxygen saturation test to see if I qualify to be on oxygen permanently. This disease has caused so much pain and money. Every joint in my body hurts, I lost five years of memories because I had brain fog so bad, I had Bell’s Palsy, my brain swelled, my eyes bulged, I couldn’t complete sentences because I couldn’t remember simple words, I gained 100 pounds because I’ve been bedridden for long periods of time, I have neuropathy and that’s just the short list. My husband has to do everything and while he calls it an act of love, I call it guilt. My entire life and my husband’s entire life has changed. We are in constant stress over what’s going to happen to me next. Every test, every procedure, every diagnosis has come out-of-pocket because the CDC doesn’t recognize chronic Lyme, therefore, insurance will not pay. All in all, I have spent somewhere around $400,000. My heart goes out to the people who mortgage their houses, sell their properties, or just plain don’t have the money to pursue “cures”. At the clinic in LA, there were entire families there with this unending disease.

I’m writing all of this now because my family needs to know that I have fought a good fight. I’m ready for whatever comes down the pike. I want to live again, I want to see my grandchildren grow up, I want to live life to the fullest (as I have always done), I want to laugh and have fun with my TRUE friends, but I am also very, very, tired.

I’m not going to be publicly writing about Lyme anymore, because I am sick to death of it. (No pun intended) It is such a complicated disease that I know in MY lifetime there will be no cure. But hopefully by the time my grandchildren are grown, some of the things we Lymies write about will make a difference. I hope so, because whether people know it or not, it’s already a pandemic (thousands are walking around that don’t know they have it yet) and it’s only going to get worse. I (horribly) get jealous of all the attention that other horrible diseases get. THEY get donations for research, 5K walks, ribbons, multiple tv ads, buttons, bumper stickers….we get BILLS!

ENOUGH!!