I'm tested for other things but to no avail. Things have gotten progressively worse over the years. The constant companion of pain and fatigue can be debilitating to say the least but I've tried to stay positive. I have to say I think I've done pretty good at hiding my pain for the most part. I haven't been able to work or do much else since this started. Last year I was in a better cycle (it seems to go in cycles for me of worse and better), and I was able to work as a substitute some days. Well, that good cycle is gone and things have progressively gotten worse over the past 6 months including a couple of trips to the hospital.
A couple of years ago, I watched a wonderful documentary Under Our Skin on Amazon Prime. I don't even know why I decided to watch it but I'm glad that I did. It is about Lyme's disease and how most people with fibromyalgia really have Lyme's. I've been tested a couple of times over the years and it has always come back negative. What I didn't realize was that the test that most doctors give you only test for a few strains and you have to test positive for all 3 bands to get a positive diagnosis.
Well, I have decided to investigate further because from everything I've seen so far I've become more and more convinced that I have Lyme's disease. My nephew was diagnosed with chronic Lyme's and sees a Lyme literate doctor. I talked to my sister-in-law about it. There is only one lab, Igenex, that we have found that tests for the full spectrum of Lyme. My nephew was tested through this lab. My sister-in-law spoke to the doctor about me and what I need to do.
To start off, he said I needed to start 2 supplements, Samento and Banderol. If they cause a flare up, it is a good indication that I have Lyme's disease. From what he said, these supplements kill off Lyme and makes them get more active. You want it to be more active before you get tested. If it isn't active, it is harder to get an accurate diagnosis. I need to stay on these supplements for awhile. So, I keep them active (if it is Lyme) and also to make sure it isn't just a normal flare up for me.
Well, last week I spoke to my doctor about all of this. I love my doctor; she is wonderful, and open to any suggestions or questions I have. She is not a "Lyme literate" doctor, but she does see several patients with Lyme and/or fibromyalgia. She had heard of the lab, and said that she would support my decision to try this new therapy and testing and help me with anything I needed. She knows a little bit about some of the therapies, doctors, and labs that work with Lyme and would give me referrals if needed.
So, I started the supplements last week. If how I'm feeling is any indication, I have Lyme's. I have been having a full blown flare up. I have been so exhausted and my pain has been through the roof. Even just sitting here trying to type this up is painful. It is hard to explain how miserable it is. It is like every nerve, muscle, bone, everything hurts. It's like I can barely keep my head up. It hurts my legs when I have my computer on my lap, and it is pretty lightweight. It hurts my hands and arms to crochet or to hold anything which has never really bothered me.
What really sucks is that this will continue. I have to stay on these supplements for at least a month or so before I get tested. If the tests come back positive, I will stay on these supplements trying to kill off all of the Lyme. I will also have to take other meds. I know that things will get worse before they get better if it is Lyme from what I've seen and read. The only benefit will be that I should be able to be cured in the long run. I just can't believe I'm taking stuff that I think will make me feel worse.
Of course, there is another problem with all of this. It seems that most insurance companies cover treatment for chronic Lyme. So, not only can I not work but I will costing us a fortune trying/hoping to get better. I have never filed for disability but I'm quickly changing my view on this, too. I hate that all of our money seems to go to my medical expenses and medicines. My husband and I would love to take a trip or cruise and/or be able to just do small things like go to the movies or out to eat. Somehow, I have to get past this guilt, too.
Anyway, I just wanted to let you know what is going on, to let you know I may not be on as much as usual, and to let you know to never give up. If you are sick or having other problems, continue to look for solutions and/or help. I know I have a long road ahead of me but I hold to the hope that I can get to the point to where I can have a somewhat normal life and do things without being in constant pain. I will try to keep my chin up and I hope you do, too.
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