Lyme Treatment

The CDC won't admit to chronic lyme disease, won't allow doctors to treat for chronic lyme disease... yet the same CDC won't allow those who have chronic lyme disease to be organ donors. So which is it then? Does chronic lyme exist or not exist?

Chronic lyme disease exists and anyone who suffers from it will say so. Those who don't suffer from it and claim there is no such thing would quickly change their minds if they had one tick bite change their life... going from a fully able bodied, energetic, working person to a disabled, always in pain, weak and overlooked patient... who have to pay out of pocket for doctors who don't take insurance because of the bogus guidelines set for treating lyme.

When you hear stories of people having lyme disease and fully recovering there is a reason for that. They were most likely bit, saw the tick or at least had a rash, possibly had a positive blood test, and immediately went on antibiotic treatment for lyme disease. They caught it before it could turn chronic, before it could hide and start taking over your body. However, even then sometimes they don't get better.

So because of those different cases of lyme you heard of, the acute cases, you cannot assume that lyme disease is not serious. You cannot assume that lyme disease is not a problem. You cannot assume that because a person looks fine that they are fine. Chronic lyme disease is a horrible, devastating, debilitating illness. Chronic lyme disease means it may never end. Never. Even if it does become better, most likely the lyme will never fully leave your system and can again take over at any point in time.

Though I had a tick bite and saw a rash and got sudden severe symptoms back in September, I am currently being treated for chronic lyme disease. That is because I got lyme disease back in college and it was never treated. I didn't know any better back then and I trusted the doctors who didn't treat me for it. What most likely happened was that after that initial sickness period, it lay dormant in my body. Then when I got pneumonia or any of the other problems I encountered from then on since 2010, lyme came back out. When I got it again this past September, it came out with a vengeance. Lyme disease could be the cause of or at least attributing to my Myasthenia Gravis. Same for POTS/dysautonomia. Same for almost everything else. I do have those things and they are serious, but they may have been caused by or brought on by one little tick bite 10 years ago. And now to lessen the severity of any of those other illnesses we have to take care of the lyme. 10 years worth of lyme. That is far from easy.

I've been on medications to treat lyme for 4.5 months. Several as well as additional ones to treat a coinfection- another illness contracted from that little tick. Recently I started an additional medication. You see, lyme disease hides itself in cysts in your body. Anywhere. Lyme disease can pretty much take over you- your brain, your heart, your kidneys, your nervous system. Anything. And when it hides in these cysts it still takes over your body but the regular antibiotics used to treat it can't find it in hiding. So this new medication I started busts open those cysts so that the other medications can then attack the lyme. What this means is that the lyme is errupting throughout my body. So I can potentially get much much worse before it gets killed. And this process can take an extremely long time- years. And it will most likely never completely get rid of it. Lyme will always be a part of me and can come back out and attack me.

Therefore, some days I am better. Some days I am worse. But every day I feel it even if I don't look it. I feel the pain. I feel the stiffness. I feel the cracking in my bones and joints. I feel the weakness. I feel the nausea. I feel the dizziness. I feel the brain fog. I feel the rage and anger. All due to one, or in my case two, little tick bites. I feel all of it and sometimes it's so debilitating I have no choice but to lay in bed and do nothing. When lyme isn't making me feel horrible, the medication side effects are, or the MG or POTS is. It's always something but I still always try to go out there with a smile and do what I can when I can. That doesn't mean I'm better, it means I'm trying to have the highest quality of life I can. When I go home I can assure you my time will again be spent resting in bed, because lyme does not give me a choice.

I haven't written in a while because I had put a hold on starting this new medication that I knew would potentially make me worse. My progress was at a stand still. Thus I tried to enjoy life a bit and though I was still far from "normal", enjoying life a bit was pretty awesome. Now it's back to business and that means taking this new medication and feeling the effects of it. Treatment is a long, painful, difficult process that may possibly never end. But this is my body, this is my journey, this is my story, and I know it doesn't end here. God has a purpose and I'm excited to see where my story goes as I make the most of each page that gets turned in it.