Battling Lyme Disease

I typed in "Lyme can barely move" in google. I found a blog about an Aspie woman with Lyme. Excerpts:Lyme is Such a Pain
For nearly the past decade I’ve had pain that the doctors could not explain. I’ve had MRIs, CT scans, X-rays and more blood work than I could have ever imagined having. I’ve had nuclear stress tests, regular stress tests, ultrasounds, physical exams, and no one could come up with a thing. I had been told that I have severe osteoarthritis in my neck (I don’t) and that I have RA. I don’t. I’ve been told that I have Fibromyalgia, CFS, and possible mixed connective tissues disorder, Lupus and possibly MS. Possibly MS? They do have tests for that, you know, and they are usually pretty conclusive as far as I’ve been told. First I have Sjogren’s Syndrome, then I don’t have Sjogren’s Syndrome. First I have Celiac Disease then I don’t have it, then I do again. What?! (For a bit of an intro into this please see my post: It Begins With a Bite: scroll down.)

I’ve had doctors even tell me: “Why bother testing for any of these things? We still won’t be able to do anything for you. Learn to live with the pain and exhaustion.” Great doctors.

A month ago the diagnosis finally came: Oh! You have Lyme Disease. You present just like someone would present with Lyme and since all your other tests have come back negative, then that’s what I believe you have.” Blood taken (again) test results back: LYME POSITIVE. Now an explanation.

I cried so hard when I got that diagnosis. It was a combination of knowing what the hell was going on finally and “Oh my God, I do not want this stuff.” Chronic Lyme is no picnic. I hoped for vitamin deficiencies (which I do have as well) and for nothing more. But something inside of me knew it was true. I’d told doctors about the tick bite and I had even been tested once near the beginning of the ordeal but the doctor NEVER gave me that section of the test results. I had no idea they’d tested for Lyme. The results were negative anyway. That is very common to have happen. If you don’t have enough antibodies in your body to the Lyme bacteria then you will test a false negative. Over a decade I’ve built up plenty.

The pain a person goes through in Lyme is multi layered. First, there is the horribly, unbelievable physical pain. It is unreal the severity of Lyme pain.

Last night my head felt as if someone were trying to squeeze my skull with a vise and poke holes through my ears with long, thick, sharp needles. The pain in my right shoulder was not like a bursitis pain during the night last night. It was very concentrated in one specific spot and was excruciating. Not searing, not burning, but sharp and stabbing on the surface as well as running deep down inside the joint.

Many times my hands hurt so badly that I can barely type and it takes me forever and a day to get something simple down on the keyboard. Sometimes it’s hard to hold utensils to eat my meals.

I have a super high pain threshold and so I tend to take on a lot of pain. I do not rush to the emergency room, though I most probably could have several times over the last several years. Instead, I save my ER visits for those times when my heart is doing things that frighten me the most. I hate going to the ER because they run all these tests, more radiation, more chemicals, and they always say: “You’re in great shape.” Well, hell, thanks for telling me. I shall now go home and do my happy dance. I’m in great shape!

Spirochete do not show up on these tests. They do not see the actual damage being done or the reason for the pain and extreme exhaustion. When you’ve been fighting an infection for any amount of time, your body gets very, very very tired. Just think of how you feel when you come down with a really nasty flu or a case of bronchitis. You feel horrible. Your body aches everywhere and you can barely move. That’s what it’s like with Lyme but worse. I have had some pretty nasty flues in my life and having Lyme for almost a decade means I’ve been fighting these kinds of symptoms and so much more this whole time with very little reprieve from it all. People with Lyme Disease are real fighters. They are also real sufferers. Hopefully, we’ll be survivors and eventually Victorious too.