Tuesday, February 25, 2014

Update On My Lyme Journey: Part 2

It's been over five months now since I started my new Lyme treatment. Despite working really hard for more than three years using various protocols, my doctor and I found out last September that I still have an active infection. 

Discouraging, but we also found out a significant missing piece to this puzzle in how the chronic Lyme infection has affected my immune system. To read my previous health update about this, please go here

I am having some rough days on this treatment; it's really up and down. Some days I feel better, other days I feel bad, and many days fall somewhere in-between. However, it sure beats feeling the absolute worst every day, all day, like I have for so many years.

We're also treating the long-term Epstein-Barr (EBV) infection I've struggled with for quite a while, too. Last fall, the immunologist that my doctor consulted said it's imperative to treat EBV in conjunction with Lyme because they get layered together and play off of each other. Therefore, treatment must target or address both. 

 Several years ago, I was treated by a physician for over two years with different prescription antivirals (Valtrex and Famvir) for Epstein-Barr specifically. Clearly, it didn't work because it's still an ongoing issue for me. However, we didn't know about the Lyme infection back then, so I believe Lyme and EBV do work in tandem, just as the immunologist said. Before hearing that from him, I'd always felt a link between them because of my own experience.

We are also working to correct the severe immune dysfunction the Lyme bacteria have caused in my body. I certainly think this has played a role in the chronicity of EBV, but I also believe Lyme disease directly has everything to do with keeping Epstein-Barr in a reactivated state.

As for the immune dysfunction, I'm stuck in overdrive on my T-helper 2 side, which means it overacts. As a result, this has pushed my T-helper 1 side into suppression, which causes it to underact. All of this is due to the chronic Lyme infection. It's been happening for a lot of years and has thrown me into an auto-immune cycle. The immunologist also told us long-term Lyme infections cause the immune system to become so confused that it literally loses its intelligence, but we're working to restore it.

I'm experiencing more neurological stuff at times, too. I've been having a lot of buzzing, tingling, numbness, burning, and shock-type pains. The sensation on the left side of my face was very dull for several days. All of these sharp, burning pains feel like touching an electric fence that sends a burning jolt through you. While it isn't very pleasant to go through, I think it's actually a sign my body is working to heal and repair my nervous system. I believe the treatment is helping reduce inflammation and better support my neuronal function, which is precisely what it's supposed to do. 

Also, the large Lyme ring rashes I've had on my back, chest, and abdomen for almost a year now are significantly better since starting this treatment. At one point, I seriously looked like I had the Olympic rings on my back, except there were way more than five. Overall, it has mostly cleared up, and I am so glad. A big thumbs up for that! 

I'm not sure what's coming next in terms of how I'll feel. It will probably oscillate back and forth, but either way, I've got to do this. We must deal with this Lyme infection as outright as possible and continue reducing inflammation in my body. I do believe there are some good changes are in progress. I just hope and pray I feel better sooner rather than later.

On a side note, this year, 2014, marks twenty years of chronic illness for me. I can't help but think back through the many long and difficult years and wonder how I've survived it all. It's been hard, and that's an understatement. But, as I've said many times before, and it really is true, God has kept me in ways only He could.

My beloved mother is and has been all throughout these years, my "boots on the ground," if you will. And let me tell you that when you're chronically ill, you need present, tangible help every day. 

Love and well wishes from afar are nice, but they aren't the present and tangible help you need when you're so profoundly sick, debilitated, and fatigued. She's the one who has been by my side through all of this, and I am ever grateful. I can't begin to tell you how much she has done for me over these past twenty years. Not only the big things but also the small day-in-day-out things. I am blessed by her care and devotion in helping me be well.

Prayer helps sustain us very much, but practical help is equally necessary; it takes both to get through this. Actually, when you're that sick and fatigued, and you can't function, you need those real and present hands and feet more than anything else. 

So yes, prayer helps, but it doesn't make meals for you or tangibly meet your ongoing physical needs each day. It doesn't drive you to doctor's appointments and sit with you while you're receiving your lab or test results. It doesn't hold your hand while you're having an awful day. In other words, love in action from somebody is required.   

My Mom and Dad have both made many sacrifices to help me since I've been ill. And I understand how truly blessed I am to have the ongoing support I do because many do not. My illness has been hard for my family too. I know it can't be easy to watch someone you love suffer so much for so long. Chronic illness truly affects everything.

What I'm experiencing while on this treatment isn't something I haven't already on some level over the years, but it sometimes gets wearisome. And, again, if you don't have that ongoing tangible support, it's doubly hard and stressful. 

Many do not have the support they need, and they suffer more as a result. Everyone whose sick should have somebody in their life they can depend on to help them, but sadly, that's not always the case. And that hurts my heart.

Let me say that I absolutely believe God is doing what only He can in this, but in the meantime, I have to keep doing what is necessary, too, and it is a full-time job. 

I continue asking Him for perseverance and resolve, so if you'd like to pray anything for me now, please pray for that. And please pray for everyone who has Lyme disease. The suffering is often so tremendous, and not everyone has a caregiver to help them regularly.

Better yet, if you know someone with Lyme, or any chronic illness for that matter (especially with no ongoing support), offer to help them practically in some way. For instance, offer to run errands or help around the house somehow. Perhaps they need transportation to an upcoming appointment, and, if you're able to do so, filling that void would sure lift a burden. Ask what their specific needs are and then follow through with the particular help.

I'll end for now by saying, none of this is easy, but you just have to focus on what needs to be done each day - that's what I've learned through the years.

Take one day at a time. 

Be brave. 

Do the work. 

Cry when you need to. 

And then trust God with the rest.