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 very 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. But we also found out a significant missing piece to the puzzle in how this long term infection with Borrelia (Lyme bacteria) has affected my immune system. To read my previous health update about this 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 anywhere in between. But 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 that I've struggled with for quite awhile as well. The immunologist (Dr. N) my doctor consulted with last fall says it's imperative to treat EBV in conjunction with Lyme because they get layered in together and play off each other. So treatment must be targeted at both. 

Actually several years ago, I was treated for a two year period with several different prescription antivirals specifically for Epstein-Barr. Clearly, it didn't work because it is still an ongoing issue for me. We didn't know about the Lyme infection then either so I think, just as Dr. N stated, that Lyme and EBV do work in tandem. Even before hearing this from him, I've always felt there is a link between them because of my own experience.

We're also working to correct the severe immune dysfunction the Borrelia (Bb) bacteria has created in my body. I think this has clearly played a role in the chronicity of EBV but I truly believe Lyme directly has everything to do with keeping EBV in a reactivated state. As for the immune dysfunction, I’m stuck in overdrive on my T-helper 2 side, which means it overacts. This has pushed my T-helper 1 side into suppression, which causes it to underact. All because of the Lyme infection. This has been going on for a number 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 shocking 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. It isn't very pleasant to go through but I think it's actually a sign my body is working to heal and repair my nervous system. I believe the treatment is helping to reduce inflammation more and is better supporting my neuronal function, which is exactly what it's suppose 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 big Lyme ring rashes I've had on my back, chest, and abdomen for almost a year now are much better since starting 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. Big thumbs up for that. 

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

On 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 these many long and difficult years and wonder how I've survived it all. It's been that hard and then some. But as I've said many times before, and it's 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 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. And 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 only the big things but the many small day in and day out things as well.

Prayer helps sustain us very much but pragmatic help is equally necessary. It takes both to get through this. Actually, when you're so sick and fatigued you can't function, you need those real hands and feet present to help you more than anything else. You need somebody to show up. Yes, prayer helps 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 doctors 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 really 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 very hard for my family. I understand it isn't easy to watch someone you love suffer; especially for so long. This illness truly affects everything.

What I'm going through while being on this treatment isn't something I haven’t already been dealing with on some level through all these years, but it does get wearisome sometimes. And again, if you don't have ongoing tangible support; it's doubly difficult and stressful. Too many do not have the necessary support needed 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.  

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. And it's a full time job. I also continue to pray for perseverance and resolve. If you'd like to pray anything for me right now, please pray for those two things but especially resolve. And please pray for everyone who has Lyme disease. The suffering is often tremendous and not everybody has a caregiver to help them. 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, or help around the house. Or perhaps they're in need of transportation to an upcoming doctor's appointment. Ask what their specific needs are and then follow through with help.

All of us who live with chronic Lyme disease know what a battle it is to reach remission. And we wonder about relapses because the Borrelia bacteria is so good at hiding in the body and is relapsing in nature. 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. Cry when you need to. And keep trusting God. 

~ Michelle