Posted 4/16/2016 12:26 PM (GMT 0)
Rockon, PLEASE don't go into the Lyme forum to post. All it will do is upset you and cause back and forth arguing. We have seen this in the past. The Lyme mod's also ask that their members stay in their own forum. We had a big problem several years ago and one Lyme member was banned over this argument. If you want to go read, fine, but please don't start posting.
I know it's soooo frustrating when you are told that you really don't have Fibro. It seems that many people with Lyme think we all have Lyme disease. They go through a lot of what we go through. The big difference is that they know what causes Lyme disease so they do have a test for Lyme. We have had a member who was diagnosed with fibro, kept getting worse and worse, and it was discovered she did have Lyme disease. You can have both Lyme and fibro too! BUT we also have had people diagnosed with Lyme that actually had fibromyalgia. They had been given a lot of unneeded antibiotics. This is off the Fibromyalgia Symptoms site.
"Lyme Disease. Lyme disease is a bacterial disease transmitted by ticks. Health care providers can usually (but not always) diagnose Lyme disease correctly using blood tests that identify antibodies directed at the bacteria that cause it. But if this disorder isn't diagnosed right away or it comes back, it may be mistaken for fibromyalgia. Some experts believe that 15 - 50% of patients referred to clinics for Lyme disease actually have fibromyalgia. If fibromyalgia patients are incorrectly diagnosed and treated for Lyme disease with long courses of antibiotics, the drugs may have serious side effects."
Did you catch that? 15%-50% of people referred to clinics for Lyme disease actually have fibromyalgia! So there could be members being treated with antibiotics for Lyme disease when they actually are dealing with fibro. So I think you can see how the back and forth bickering can start and get out of control.
Just wanted to note that early in my diagnoses, before a test for Lyme was created, I was put on Tetracycline to knock out Lyme...IF I had Lyme! Results? I had a reaction to the tetracycline, combined with my Crohn's disease, and ended up having to have my entire colon removed just weeks after doing the Lyme treatment that was used back then! What a price to pay to check if I had been misdiagnosed with fibro! And, yes, my pain continued after the antibiotic treatment.
I wish all of us didn't have fibro or Lyme disease. They are so similar so we do understand what they go through pain-wise. But you and I know we do have fibromyalgia. I was diagnosed 29 years ago and if I really had Lyme disease I would be a huge, painful mess right now because I wasn't being treated properly. But I am doing better...better than I have in years. These illnesses have many of the same symptoms.
I saw that one of their statements was that they know the cause of Lyme but not the cause of fibro. This doesn't make fibro any less an illness. Many doctors and researchers are working diligently on finding the cause and a cure for fibromyalgia. They wouldn't be wasting their time and funds to do this if fibromyalgia didn't exist!
So, fibromyalgia members, please help keep the peace by not posting in the Lyme forum. I'm locking this thread now so things don't get out of hand again. Relax, smile, and have a great weekend!
Sherrine