Hi all - I went 25 years with fibromyalgia, with more and more symptoms, you all know the drill, and finally I went online to ask if anyone could tell me what I had.
An online nurse across the country asked me what my symptoms were, and then, had I ever been bitten by a tick. Answer: yes, on my foot, 25 years before. I had gone to a health clinic, saying something's in my foot. "It's a tick. We'll take it out." And they did, and I forgot about
it.
10 weeks later, my first symptoms started - sore neck and shoulders. One year later, a very stiff neck. 18 months after the bite, pain from head to toe that was called fibrocitis, with the name changed in 1990 to fibromyalgia. I met in both large and small fibro groups. No one knew what it was. We all were just throwing treatments at our bodies to see if anything would work.
Fast forward to me with so many symptoms, I was asking online. The nurse told me I had Lyme disease, and I said, "What's that?" I soon found out - it was a bacterial infection I had acquired from the tick that bit me - some ticks are infected and some aren't. The infection is named for Lyme, CT where it was first called in because kids in the area were getting arthritis in their joints.
I bloodtested positive, went on clindamycin antibiotics, 150mg every 6 hours (btw, we all use different abx - this one happens to work for me - I now take 150mg /day), and in a week's time, all my fibro pain of 25 years went to zero and I was flabbergasted!!
So that's why I'm here, to discuss treatments with you and answer questions. I am at 30 years now and still having to treat because I was chronic so long. We're all different, with different strains of the Lyme bacteria and even sometimes some co-infections as well, and we all respond differently to treatments.
A couple more things - the bacteria are transmitted by infected ticks and other bugs and also us, via tissues and fluids, such that some of us could get it congenitally or via breastfeeding and so never have been bitten by an infected tick.
Many never see the tick that bit them, since the nymphal ones can bite and drop off. Mine was an adult female and they will feed for up to 10 or 11 days.
And, to complicate the picture, we don't have perfect testing available yet. So only 60-70% of us test positive who actually have the illness - see the 27 reasons for not testing positive at www.canlyme.com/seronegreasons.html - that's why Lyme-literate doctors (we call them LLMDs, the ones who are specially trained to treat Lyme and co-infections) treat clinically, by history and symptoms.
When I was told I had Lyme, I googled for the symptoms of Lyme disease and also co-infections (babesia, bartonella and ehrlichia) and saw that I matched Lyme symptoms and not the co's. This is a simple thing to do, to look at a list of symptoms.
Lyme symptoms are so varied because the bacteria go into the brain within 12 hours and inflame the brain and spinal cord. That's why I had a sore neck and shoulders 10 weeks later - due to cranial nerve inflammation.
So first the bacteria, which are spiral-shaped, screw up the brain and all our systemic processes with inflammation, and then they also corkscrew into our tissues anywhere and cause inflammation. So that's another reason why we can get symptoms literally anywhere. I was declared a medical mystery, I flunked every kind of therapy tried, I had 4 unnecessary surgeries, and I just got sicker and sicker.
If I can help alleviate people's on-and-on suffering here, that's what I'm here to do. Thanks for reading my very long introduction, and please feel welcome to ask me questions!
Post Edited (IFoundOutWhatIHave!) : 7/3/2011 2:03:14 AM (GMT-6)