Tuesday, February 25, 2014

Update On My Lyme Journey: Part 2

It's been over five months now since I started a 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 Lyme infection. Discouraging, yes. But we also found out a significant missing piece to the puzzle in how this long term 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. The immunologist (Dr. N) my doctor consulted last fall says it's imperative to treat EBV in conjunction with Lyme because they get layered in together and play off each other. Therefore, treatment must target or address both. 

Several years ago, I was treated over two years with different prescription antivirals (Valtrex and Famvir) specifically for Epstein-Barr. Well, clearly, it didn't work because EBV is still an ongoing issue for me. However, we didn't know about the Lyme infection back then, so I do believe, just as Dr. N said, Lyme and EBV work in tandem. Before ever hearing this from him, I've always felt there was 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 this due to my long term Lyme infection. It's been going on 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 it literally loses its intelligence. We're working to restore it.

I'm experiencing more neuro 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 more and is better supporting my neuronal function, which is precisely what it's supposed to do. I still have a way to go with this, but my movement and balance are some better. I've got to get out of this wheelchair, and I am!

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

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

On a side note, this year [2014] marks twenty years of chronic illness for me. I can't help but think back on everything I've been through over the many long and difficult years and wonder how I've survived it all. It's been tremendously hard and then some. But like I've said so many times before, and it is true, God has kept me in a way only He can.

My beloved mother is my "boots on the ground" if you will, and has been all these years. And let me tell you when you're chronically ill, you need present, tangible help every, single day. Love and well wishes from afar mean a great deal, but they aren't present tangible help while you're so sick, severely fatigued, and debilitated. She is the one who has been by my side through it all; I am so grateful to have her and the help she gives me. I can't begin to tell you how much she has done for me these past twenty years; not just the big things, but the myriad small day-in-day-out things as well.

Prayer helps sustain us very much, but practical help is equally necessary; it takes both to get through this. Actually, when you're really sick and fatigued and you can't function, you need those real, present hands and feet to help you more than anything else. In other words, you need somebody to show up. Yes, prayer helps much, but it doesn't make meals for you; it doesn't tangibly meet your ongoing physical needs throughout each day; it doesn't drive you to your doctor's appointments; it doesn't sit with you while you're receiving your lab or test results; it doesn't hold your hand while you're having a bad day. Love in action from somebody is required.   

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

What I'm dealing with while being on this treatment isn't something I haven’t already on some level through the years, but it does get wearisome at times. And, again, if you don't have ongoing tangible support it's doubly difficult and stressful. Too many do not have the necessary support they need, and they suffer even 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.

I absolutely believe God is doing what only He can in this, but in the meantime, I must keep doing what I need to do, too, and it's a full-time job. I continue praying for perseverance and resolve. If you'd like to pray anything for me right now, please pray for those two things, but especially resolve. Also, please pray for everyone who has Lyme disease. The suffering is often tremendous, and not everyone has a caregiver to help them on a regular basis.

Better yet, if you know someone sick with Lyme, or anyone whose chronically ill for that matter (especially with no ongoing support), offer to help them practically in some way, i.e., run errands, pick up groceries, help around the house. Or, perhaps they need transportation to an upcoming doctor's appointment or physical therapy. Ask what their specific needs are and then follow through with help.

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.

Do the work.

Be brave.

Cry when you need to.

And trust God with the rest. 

~ Michelle