Posted on Dec 18, 2015 in Blog |
I’m sitting on my living room couch with tears streaming down my face proving that I am tired, stressed, and emotional. I have a pretty good idea of what’s causing it, but it’s something I haven’t been ready to talk to many people.
This is a BIG pity pot I am sitting on right on.
In the 12 Step Recovery program that I participate in, one of our slogans is: We are only as sick as our secrets. I have been keeping this a secret and it’s making me sick.
As most of you know, I started treatment for Bartonella, a bacterial co-infection of Lyme disease about six years ago. I finished treatment four years ago and have tested negative for Bartonella since then. SUCCESS.
I then was at a plateau for a few months, undergoing more testing, trying to figure out why I was still experiencing many symptoms. I had originally tested positive for Babesia, a parasitic co-infection of Lyme Disease. Its symptoms are likened to malaria.
This is when we discovered I had Protomyxzoa Rheumatica FL 1953, a parasitic co-infection of Lyme Disease. We were thinking that this new protozoa might be causing a false positive on the Babesia test.
The protozoa had been discovered by Dr. Stephen Fry only a few months prior. Imagine just finding the parasite and then trying to figure out how to treat it or kill it. Look at how long we have known about cancers and the continuing search for a cure. Luckily, I have a brilliant physician who tried a few things and they seem to have worked. If all goes as planned, next week will be my last IV for treatment for the PR FL 1953 and the multiple variants that had taken up residence in my blood.
Four months ago, I started developing new symptoms and other symptoms were worsening. That’s a scary place to be when you are supposedly healing.
Dr. M sat me down and explained me that all my new symptoms were typical Babesia symptoms. He said the Protozoa didn’t give me a false positive. He reminded me of when he had put me on the Babesia meds a year ago and my significantly negative response to them – which means the meds were attacking the diseased cells.
One of the intricacies of “Lyme disease” treatment is that can be like peeling an onion.
The patient can present, as I did, with symptoms that are most inclusive of one infection. In my case, I presented with Bartonella symptoms. But as you kill that infection off, it can leave room for a latent infection to take advantage of the open space and then flourish. That’s what happened with the protozoa and then again, that’s what happened with the Babesia.
Babesia is an infection in the blood cells. It is throughout the body. If you have been diagnosed with Babesia, you cannot donate blood or body organs.
Babesia is, at this time, incurable.
And that is where my sulking and self-pity come in. I am so angry about this. I want to be DONE. I want to be WELL. I want to have this OVER.
I was so close to being finished with the Protozoa treatment and then Dr. M tells me I have to start Babesia treatment.
He started laying out his plan to me and I just lost it. I cried. Because this time, unlike six years ago, I KNOW what lays ahead. And I just don’t want to do it.
It has been a rough year for me, medically. On May 8th, I was admitted to the hospital with a Deep Vein Thrombosis (blood clot) and pulmonary emboli. The clot started at my ankle and ended just short of my femoral vein in the pelvis – not a minor incident. I spent seven months on meds, finishing off with two surgical procedures. I am now no longer in danger of developing another DVT in that vein. But it was a tough period that brought to light just how “lucky” I am.
- I waited two weeks to see a physician for the leg swelling. By the time I was admitted, I was in danger of having a fatal pulmonary “event.”
- From other testing, I found out that two years ago, what I thought was a Baker cyst popping open in my other leg was actually another Deep Vein Thrombosis that resolved without intervention.
Lucky? Yes. Still sulking? Yes.
In the midst of my self-absorbed pity, I received emails from two friends in similar circumstances. One read, “Three surgeries, two major broken bones, H2N3 flu, heart attack, not to mention the Parkinson’s, which is always with me.”
Still sulking? Hmm, let’s rethink my situation.
I’ve been like a two-year-old whining and resentful. And I need to stop because at this point, it’s not helping me heal. I told Dr. M I was going to sulk about this until 2016. I needed the time to just feel and be in the ick-i-ness.
Remember those symptoms I was having? I am still having them. And they are not going to go away unless I do something. If I want to heal, I have to take the medicine.
I keep getting stuck at the word INCURABLE. Incurable is what they were saying about Bartonella six years ago. Dr. M told me he was very confident that he could significantly reduce my Bartonella symptoms. And he did. He eradicated the Bartonella. And he did the same with the Protozoa. I watched the process in my blood smears.
He is willing to give this one a try as well. He’s willing to try to eradicate the Babesia from my blood. He is offering me no promises. But he is brilliant. And I trust him. He knows my limits; he knows what makes me tick (pun intended). He knows how to motivate me.
Oddly enough, just writing this down takes the pain away. It relieves the anxiety and helps me refocus on the target.
Letting go of my secret of being diagnosed with a third co-infection allows me to move forward with positive energy and stronger determination.
I think I will stop the self-pity tonight. No need to extend the unnecessary and unhelpful.
I will enjoy the upcoming holidays and a long planned vacation in January. And then we will start on our mutually agreed treatment plan. I can do this. I’ve already done this with two other infections. It’s just one more. One step at a time.