Could it be (late stage, neurological) Lyme’s Disease?

I’ve been sick for about 5 years now. I don’t mean not feeling well… I mean down and out. Done. Toast. I could barely get out of bed for a year, could hardly walk due to muscle weakness and tremors, and I was losing more and more physical and mental function all of the time. I started losing hair. I started having trouble talking. It took immense effort not to slur my words. I forgot everything, so I’d have to write it all down. Then I’d forget to look for the reminders. It was hard to watch TV, read, I couldn’t read out loud at all. Face to face and phone communication became very difficult because I couldn’t think and talk, so I began to email everyone so that I had time to gather what I wanted to say. I had to withdraw from everything. I saved every tiny bit of energy for my family just to be sure they got the basics (my husband doesn’t drive). When I did have an upswing it never lasted long. One of the symptoms was exercise intolerance. All it took was overdoing it a bit and I would crash right back into the crushing fatigue, pain, and neurological haze.

They tested me for all kinds of diseases. MS, Tumors, Lupus, even Lyme’s. Nothing was found except some mild sleep apnea. The neurologist finally decided it was a case of Guillian Barre but that I had recovered (?) enough that they couldn’t diagnose it with testing, and sent me home. I even visited Cleveland Clinic in an effort to find out what in the world was wrong with me. I thought it was very possible I was dying. Still, nothing was found. I thought for a short while I was better when I was diagnosed with Insulin Resistance and I had an upswing with treatment, but it wasn’t enough to give me back my life…. and new symptoms began to emerge. Arthritis in my knees, and my jaw was getting so painful and stiff I could barely use it.

Then, in my own research, I started looking into Lyme’s disease as a possibility. It can mimic many diseases. So I visited a doctor about 3 hours away from me that treats many Lyme’s patients. After several tests (which are notoriously unreliable) I am still testing negative. But….

He treated me anyway. Apparently when you have long term Lyme’s Disease and you’ve been ill for years, the tests can all be negative. Especially when it has become late stage and neurological. I’ve heard of Lyme’s disease, but since I had tested negative, it took me a long while before I began visiting a specialist to investigate. It is possible that it has always been Lyme’s, even since I started having fibromyalgia as a teenager. The past 5 years have been hell, but the past 25 have been filled with pain and fatigue as well, just not as bad. I don’t think I will ever really be able to sort it all out. I’m having elevated RA levels as well, so some of the damage could be permanent. It also means that this could be RA as a diagnosis, but if it is, I’m still responding to treatment.

I am not 100% yet…. maybe 60%? But I am doing better! I have had NO life the past 5 years, out of necessity, but I am beginning to be able to do some things again. I am discovering that I will have to start over getting a life again since most people have disappeared, but that is better than being dead, right? And I’m not quite ready to add a lot of outside activities yet. I have been able to have my sister and her family once without wanting to cry because I was so tired I wanted to lay down, not being able to concentrate on what was being said, not being able to say the things I wanted to or organize my thoughts enough to hold a conversation, and worst of all coming across as unwelcoming or not wanting them there.

I nearly cried a few nights ago when I read something out loud to my husband without misreading words, stumbling over my words, and having to mumble because it was too much effort to use my voice and too painful to open my mouth. That is something I haven’t been able to do for a long time (and I’m an avid reader who could read aloud with no effort before). It sounds like such a little thing, but it was so HUGE for me.

I’ve been on one antibiotic for 4 months now. A second was just added last week. I cannot exercise yet, but I can drive my kids to their appointments and practices. I can research the Autism that two of them were just diagnosed with. I can go to the meetings, and while I still struggle with the face to face communication, I don’t sound like as much of a bumbling idiot now. I can drive to the specialist which at first seemed like it would be impossible to go so far every month without badly regressing. Yesterday I spent the day on the couch because I was feeling very tired, and today will probably need to be similar since I’m having trouble keeping my eyes open, but it will take time to build some strength back up. I still need well over the normal amount of sleep to function well. I still get confused a lot, and have to stop and try and think about what I was doing, what I want to do, etc. But I will take ANY progress as hope that life will improve and my family can have me back. The internal medicine specialist talks to me about “when you are cured” which is something I had really lost hope would never happen.

I’m hopeful this is the answer for me, since there have been no answers for so long. I hesitate even writing this, because I fear this is a temporary rally that is just lasting longer than those in the past… but the glimmer of hope is there.

Love and hope!
HW

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