was very ill for several years (missed a year and a half of high school) and had finally been diagnosed with fibro. We did all we could using both main stream and alternative medicine and she was still getting worse. It was then suggested to us by an acupuncturist that she see a lymes specialist even though she had been tested early on for lymes and it was negative. We went to this specialist and through a lot of very specific testing found that she did indeed have lymes as well as several other serious co-infections. Fast forward about a year of treatment (which was very complex) she is a new person. She still has some symptoms of body pain and rash, but my child is functioning incredibly well. She will always have to manage her lyme symptoms throughout her life, but she is so much better that is is simply amazing. Her spirit for living has returned and my gratitude for seeing her well is enormous.
My heart felt wishes to everyone who is suffering.
HI Leslie - I am SO happy that your daughter is doing well. Just like the Lyme symptoms, We will have to take care of ourselves. I can't even imagine what you must've gone through! I have two kids that are in their 30's now. I will always be their Mother and will always worry about them. Keep us updated on how your daughter is doing?? Laurie
Thank goodness that you persisted seeing that your young daughter with the diagnosis of Fibromyalgia still continued to get worse but you continued to persue other testing and found that she had several other co-infections. What a heartwarming story of a mother's loving persistence and how it had paid off.
It warms the heart of every person who reads your daughter's staory here.
Thank you for sharing this as it may give another person the persistance to forge ahead.
Lymes does test negative unless you go through special testing which only one lab in the country (in California) is set up to run. I had my doctor send blood samples to them to rule it out. But if you do research you'll find out that the standard test - the Western Blot test, is highly unreliable. If Lymes goes into a chronic state it causes a lot of symptoms that overlap with fibro. I lived in an area where Lymes was prevalent and I was also doing a lot of camping. I explored Lymes as a diagnosis for about 6 months before I was willing to rule it out. I'm glad to hear your daughter is doing better but I would continue to look into it especially if she has a rash.
Nancy makes a very good point about lyme, that is that the standard test - the western blot - is highly unreliable. If anyone out there wants to be tested please find a lyme specialist - even if you have to go out of state. Lyme is in every single state now so no one is immune. Symptoms are quite like fibro.
Going through my daughters illness was the most painful experience of my life. I would have given anything for her not to suffer. I know that all you parents out there understand.
In addition, my daughter spent the first 8 months of her life in a very, very poor orphanage in Asia where she was underfed, underheld, and ill. Her life story is that of triumph. She is a leader and a speaker for those who are under-represented…her sense of justice is beyond her years. I could not be prouder.
Blessings to all of you and many thanks for the warm replies.
So great to hear this! Like you, I have a young daughter (18) who was diagnosed with fibro, after nearly a year of visiting various doctors. We were both convinced for the longest time that her symptoms were from Lyme disease, but the test was negative and we were told there was no reason to pursue it. Your story has me wondering! My daughter missed a good bit of school last year between not feeling well and the doctors' appointments. She went off to college 2 days after getting her diagnosis. She is learning to manage her symptoms. She recently gave up red meat and has been feeling better. Not sure if there's a connection, but since she wasn't a huge red meat eater anyway, it's worth it.
Did the acupuncturist help at all? I'd be curious to hear about the complex treatments your daughter went through. I know how you must have suffered too. It's awful to have your kids suffer. I think mothers can only be as happy as their happiest child, and when your child is in pain or too fatigued to get up to go out with their friends, we suffer too.
Hi Leslie, I've been reading the discussions and this one caught my eye. I've been tested, but did not know it is so unreliable. Would you tell me the symptoms please. I had a round red spot on my calf with a white spot in the middle. My rheumy took one look at it and said she was testing me for lyme. Which was negative. now I'm wondering? Thanks, Charlie :)
Ben's Friends has a relatively new group for Lyme disease, and the information and knowledge there is top notch. I encourage anyone who has the least bit suspicion of Lyme to join that group and have their knowledge of the disease and in-depth testing be improved.
Our moderator of that group was diagnosed with fibro and many of us went through her hell with her while she was trying for a more complete diagnosis that ended in Lyme.
Leslie, your daughter is very lucky to have you, your research and persistence has restored her life and hope.