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. 

Michelle

Struggling With Lyme, Pursuing Acceptance And Trusting God With The Rest

The struggles of living with Lyme disease are myriad, absurd, and often unexpected, just as they are with many chronic debilitating illnesses. This past week, I was reminded of this fact yet again.

Out in a store with my Mom when suddenly, I feel the familiar sensation of vestibular dysfunction arising. Subtle at first. Slightly woozy, dizzy. I'm sitting down in my wheelchair, mind you. I feel it in my eyes. There's pressure in and behind my ears and at the base of my head. I feel my neck begin to ache and tighten up. I can't believe this is happening. Rolling around in and out of isles, maneuvering people and small spaces, only makes it worse. So does too much input. Fatigue begins to wash over me. Mom takes one look at me and knows; t's familiar to her because she's seen it so often. 

We're both surprised and disappointed and we leave as soon as we can.

I'm thinking a lot of things.

Vestibular stuff. I haven't felt this in a while. Why is it happening now?

Ginger. I have no ginger with me. Shoot.

Whole Foods is just across the street. We'll go over there and get some.

By the time we get to the car, I'm running a fever and feeling more tired and woozy, a little nauseous. I'm feeling drained. I have no stamina.

What's happened? I used to be able to tolerate a couple of stops before anything like this. And I haven't had vertigo in quite some time. I feel like I've taken two steps backward.

And then it hits me.

I remember just how bad I have felt this year. How, since spring, I have not been out except to go to doctor's appointments, and many times, I've had to drag myself to those. How the Lyme treatment has been so taxing; how CMV and EBV levels got really high again this past summer, and we had to direct our focus on that too; how my spleen and liver have been so congested and dysfunctional; how tender and swollen they've been; how I've had visceral adjustments, and the last one wiped me out for two weeks.

I think I know why this happened. It happened because I've been more debilitated this year (no wonder I have such low stamina). It happened because I've been physically unable to hardly get out. It happened because I have had some better days at home since breaking from the Lyme treatment this fall, but I mistakenly thought that could translate into a better day out shopping in a store.

After many years of living with chronic illness, I know better. Having better days at home and better days out are two totally different things. I know that. I've lived that. But for some strange reason, it didn't dawn on me that I couldn't handle a store or two like usual, even though this was only my second time being out in one since early spring. And there it is. I was expecting the usual. But these are not usual times. And I have had an unusual year of feeling unusually bad.

As difficult as the past 17 years have been, this year has been uniquely complicated and challenging. I began a full Lyme treatment protocol in September 2010. Since then, between treating Chronic Lyme and multiple co-infections (Ehrlichia, Babesia, Rocky Mountain Spotted Fever, Mycoplasma, Epstein-Barr, and Cytomegalovirus), it's been a rough ride, to say the least. There are no words to fully articulate the depth of it all. If you've not been here, you can't possibly know. That's all I can say. It's as simple as that.

Ironically, I had planned to post something quite different today, a post I worked on a few days ago describing the mild, quiet, beautiful days I'd been having at home the week before last. I will still post that but what happened this past week is ever a reminder to me that there are some things we absolutely cannot do for ourselves. Only God can change certain things.

My Mom did run into Whole Foods and grabbed me a bottle of ginger. It always helps, and that day was no different. About 30 minutes after taking 1,000 mg of ginger root, I started feeling some better. Better enough to briefly stop at a store I love and then have lunch at a place I love (you learn to go on and enjoy some part of your day if you can). By then, though, I was totally spent.

One of the ongoing challenges in all this is acceptance; acceptance of what my body can and cannot do at any given moment, on any given day. On the ride home, I felt like I'd had a setback. I have felt this way many times over the years, and it still doesn't feel good. However, I've also learned it's not productive nor healthy to feel frustrated with my body for what it truly cannot do.

Instead, I must practice the love, self-care, and acceptance that I need. I know my body is working hard to repair, restore, and balance to heal. I know I help aid this process through eating good, whole nutrition, proper rest, treatment, therapies, prayer, etc. 

Being critical or harsh with my body accomplishes nothing. I remind myself to be as gentle and caring with me as I am with my Lyme and other chronically ill friends.

So I went to bed when I got home that day - I needed rest. I needed quiet. I needed hot tea. And I needed the total acceptance of where I am. That doesn't mean it will always be this way. It means I accept what I cannot change at this moment and trust God with the rest.

Michelle Holderman 

Copyright © 2011 

Go. One. More.

My door is open as I write (10:11 AM). It's a rather fallish like day here in my old Kentucky home. Low humidity and a cool gentle breeze blowing. I even had my tea on the deck this morning. Nice way to start a Saturday. It's been such a hot, oppressive summer so this is a very welcome change.

What has not been so nice is how badly I've felt these past three weeks. Bad. Very bad. I'm not feeling all that great even now yet I'm feeling a tad better than I have been. I'm not even sure why I'm writing except to give family and friends an update and perhaps simply to share what I'm going through.

Photo by Katja Brezovar

In addition to my Lyme protocol, I've been on a homeopathic series therapy to treat CMV (Cytomegalovirus) that has reared it's ugly head once again. Think mono. CMV is a cousin to EBV or Epstein-Barr Virus, the most common cause of mononucleosis. CMV and EBV, like Lyme, also get into the nervous system as well other organs. All of this together equals a burdened and overtaxed body that needs a break. Part of the problem is that we've revved up my immune system too much. I'm having an overactive immune response and my muscles, joints and lymph nodes have been paying the price. Clearly, we've had to back off a bit. It's a rather delicate balance. And it's such a complicated and crazy process. Unless you've experienced it up close and personal; you wouldn't believe it all if I told you.

I saw my doctor earlier this week. Correction - I dragged myself to my doctor earlier this week. It was pretty evident I was feeling awful and so we discussed everything that's been happening and made adjustments to my protocol. Yet my body wants to finish out this round of CMV treatment. I'll be done with it in the upcoming week. Still onward ho with the Lyme treatment.

As unwell as I generally feel, there are these times when everything - fatigue, fever, pain, inflammation, and all the other stuff - exacerbates or elevates to the worst level. Ask anyone with Lyme or any chronic illness for that matter and they'll say the same.

As my friend Kathy blogs, this illness has altered everything and requires everything to be altered. What's altered for me lately is the drive to keep pressing in. It's really hard to do when you physically feel so bad and have pressed and persevered for so many years. Yet somehow, someway (Godway) I will press on. I always do. Even when I'm crawling.

Note to self: Don't stop now. Go. One. More.



Journeying Through Chronic Illness

I'm going to share some important news I have been seeking out for many years now. Ironically, I'm doing it preceding the national campaign for Invisible Chronic Illness Awareness Week (September 13-19, 2010). I honestly had no idea it would unfold like this, but that's just like God to set things up in this way.

Most of my family and friends know I've been chronically ill for the past sixteen years. What some might not realize is just how debilitating this illness is and how difficult it's been to find an accurate diagnosis. I've been told a lot of things through the years. I've been to a lot of places. I've gone through a lot of testing. And I've been through a lot of trial and error; so very up and down. It's been complicated, overwhelming, frustrating, draining, and disheartening.

Throughout the years, I've actively searched for the actual cause of this illness, even up until now. I've encountered some of the best and some of the worst that our healthcare system offers. That in itself forced me to change my thinking and make subsequent adjustments. And I thank God for it. For the past year, my doctor and I have pursued what we now believe to be the true root of this illness that has so changed my life and my family's life.

It is with a mixture of relief and reservation that I share this with you. I mean, this is the past sixteen years of my life briefly stuffed into this one tiny blog post. It feels rather peculiar to try and put something so profound as this into a few words. And it's bittersweet, too (if you're chronically ill and searching for answers, you know exactly what I mean). Honestly, I have wrestled with writing this, but I’ve earnestly felt the Lord nudging me to do this, so here it is.

I have chronic Lyme disease.

This implies I have had Lyme disease for a long time, and it's true. Longer than anyone really knew. I was misdiagnosed many years with MS and Chronic Fatigue Syndrome. But before that, some doctors found that I had several chronic viral and bacterial infections (EBV, CMV, VZV, Strep, etc.). Before that, I had been diagnosed with Post-Viral Demyelinating Syndrome, Chronic Mono, Transverse Myelitis, Primary Lateral Sclerosis, Vestibular Neuronitis, Optic Neuritis, and Migraine Variants secondary to MS, among other things.

All along, however, it's really been Lyme disease and secondary infections. 

Yes, it's left my head spinning too.

Lyme disease is called "The Great Imitator" because it can mimic many other diseases, leading to improper and delayed diagnosis. This is what’s happened to me, and it happens to many others as well. It is a very complex, multi-systemic infectious disease that is caused by the bacteria, Borrelia burgdorferi. When left untreated, Lyme can and will disseminate throughout the body and cause significant problems—so it's been with me.

As many of you who live with chronic illness surely know, my story isn't simple. I couldn't possibly address the myriad struggles that have occurred. I want to share some of the invisible aspects of my illness, which is what Invisible Illness Week is really all about - bringing awareness to the fact that much of the suffering of chronic illness and/or pain isn't always visible to others.

Let me first say the most tangible and visible aspect of this illness is clearly my wheelchair. But what a lot of people don't really know is why I am in a wheelchair. And that brings me to some of the not-so-visible parts of this illness.

Chronic Lyme disease has greatly affected me neurologically, commonly called Neuro-Lyme or Late Stage Lyme Disease. I have weakness in my legs, which really stems from inflammation and damage to my nervous system. But you can't "see" that. I've had many problems with neuropathies, paresthesias, balance, disequilibrium, and gait. These are the primary reasons I've been in a wheelchair for thirteen years.

But there's more to this illness. Deeply profound chronic fatigue. Recurrent low-grade fevers. Muscle and joint pain. Chronic sore throats. Headaches. Light Sensitivity. And on and on it goes; so much is involved. I really can't express how debilitating the fatigue and fevers are on many days; it's so very draining. My immune system has been damaged as well. Co-infections and secondary infections are common in chronic Lyme because of this, so it is for me. The bacteria that causes Lyme has also affected my heart, liver, and spleen. You can't tangibly see much of that, either.

What can be seen are the effects of it, but they're not always recognized, and while this might all seem random in how my physical body has been affected, it is the very essence of chronic Lyme disease. It has answered many of the plaguing questions we've had about the complexity of this debilitating illness throughout the years.

For me, the good news is in finally knowing what I'm dealing with. I can't tell you how frustrating it is to not know what's really going on when something clearly is. And after so long, you just want answers, no matter what they are.

I recently began a treatment protocol for CLD. So this is all very fresh and emotional. I didn't just settle for the possible or probable. Instead, I've prayed and fought long and hard for true answers. It's still an ongoing battle, but I know better where I stand now. 

I will say that living with chronic illness is akin to experiencing, as the old Crowded House song goes, four seasons in one day—it's that overwhelming a lot of times.

As I close, I must say that my faith in Jesus plays a huge role in my life and, therefore, in this illness as well. I cannot separate my faith from any aspect of living, including Lyme disease. My relationship with Jesus is what has ultimately sustained and preserved me. And I must also tell you that I've come to know Him in a much deeper and more personal way through all of this crazy mess.

The love and support of my family, close friends, doctors, and therapists have been a tremendous blessing. There's no doubt about it; you must have tangible, present help when chronically ill. 

To my dear Mom—thank you from the bottom of my heart for all you've done for me over the years!! 

Throughout all of these long and difficult years, she has been my caregiver and cheerleader, and I cannot possibly express the depth and impact her ongoing love and support have made on me. I really don't know where I'd be without her.

Although this is a really hard and lonely journey that is so often misunderstood, and although physical healing has not yet come for me, I truly believe something will be birthed out of this pain and suffering, which is why I often refer to it as “a beautiful mess.” In some small way, it already has, but I do believe there's more to come. 

In the meantime, I’d truly be honored if you follow along with me on this Lyme journey. Oh, and welcome to My Lyme Symphony, where I’ll be writing and documenting this whole process.

Stay tuned, friends.

Michelle

Immune Recovery Clinic 

Atlanta - 2003

Michelle Holderman

Copyright ©2010