I was diagnosed with FM in 98 and just 2 weeks ago tested positive for Lyme.
I have always experienced what I call "flares". Periods where I get deep muscle pain, extreme fatigue, swollen glands, ear pain, headaches and a general flu like feeling. These flares can last for a day or months.
When not in a flare I always have muscle pain and low energy and some days are better than others.
But sometimes, I actually have good days, with very little pain and great energy levels, I call these my miracle days, I feel like a normal healthy human being.
As time goes on my flares are more prevalent than my regular days and my good days and I am definitely more ill today than I was 12 years ago.
I have also noticed over the years that when I take an ABX for an infection (sinus, bronchial, etc) my flares go away and I feel great for up to 6 weeks (depending on the # of rounds of ABX.)
So, even though I have tested positive I would still like to know - does this sound like Lyme?
Posted by Pinelady (Member # 18524) on :
I have read many do not exhibit severe symptoms until something in their life sets it off. And I do
think the antibiotics we all get a one time or another could keep it set back. But I think once
you have it it can allow so much other stuff in the system it calls for treatment.
Posted by LightAtTheEnd (Member # 24065) on :
"When not in a flare I always have muscle pain and low energy and some days are better than others.
But sometimes, I actually have good days, with very little pain and great energy levels"
That describes how I have felt since I got Lyme about 10 months ago. I've been on antibiotics since 10 weeks after the tick bite.
If you tested positive, then you have it. Many people tested negative (including me) and still have it, but a positive test is a reliable indicator of its presence.
False positive Lyme tests are very rare, but since you are having Lyme-like symptoms, you should believe your test, and get to an LLMD for treatment as soon as possible.
A misdiagnosis of fibromyalgia is all too common.
Posted by Dekrator48 (Member # 18239) on :
I was diagnosed 22 years ago with fibromyalgia.
1 year ago I discovered that the fibromyalgia was really a symptom of chronic lyme.
Since you know you have Lyme, do you have a Lyme literate MD?
If not, please post on the Seeking a Doctor board for one.
You need proper treatment for Lyme following ILADS guidelines, and a good eval for coinfections like bartonella (swollen glands), babesia and ehrlichia, among others.
It is very possible that you have had Lyme and coinfections since '98 or before.
Make sure you read the following paper by a lyme expert:
symptom list p 9-11, coinfection symptom info p 22-27...
Thanks all. I am trying to find an LLMD (researching here) and will be making an appointment soon. (I hope)
I am also reading everything I can. After 2 weeks I feel a lot more informed but have to admit I am feeling pretty bummed out and a little scared, mostly of the herxing as I live alone and can already barely find the energy to take care of myself now, I can't imagine doing so if I am going to feel even worse!
Posted by Dekrator48 (Member # 18239) on :
Summerzen,
Herxing is different for everyone.
For me, I had flu-like fatigue for a couple weeks and some increased muscle and joint pain.
Maybe you can use any good moments you have now to prepare some easy meals and freeze them in small portions (avoiding sugar, gluten, dairy, soy, and corn syrup is recommended by me).
That way, if you are more fatigued for awhile, you will have some prepared food that is not the processed junky stuff that most convenience food is.
Try not to be too scared. I never really worried about it because I was too excited to begin treatment with the hope of a normal life again.
We will be here for you when you need support.
Posted by TF (Member # 14183) on :
What you described in your first post in this thread sounds like lyme disease.
Lyme disease is often episodic at first. It was episodic for me for at least 5 years. I would have "flares" or episodes lasting up to 7 months, then 5 months of being normal.
I could not go a year without a flare. It seemed crazy at the time. I have met many fibro patients who said their fibro was episodic at first also.
I consider any serious fibro case to probably be lyme disease. So, these fibro people are also experiencing exactly what you described. It is very common.
But, unfortunately, it eventually gets to where you are sick all the time. No more good times. Just bad days of varying intensity. Then, finally, all bad, bad days.
So, the disease progresses over time and more and more bodily systems are affected. When it starts seriously affecting the brain, you really want to be sure you get good lyme treatment. You don't want to end up with permanent brain damage from something that could have been prevented.