Read Between The Lyme
#LivingwithLyme
Meet and Greet: 7/23/16
Time to join the partee and meet some new friends!
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4 Comments on “Meet and Greet: 7/23/16”
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Read Between The Lyme 
I’m glad that you found me today! My niece has lost 10 years of her childhood to Lyme Disease and I’ve lost almost that to Chronic Fatigue Syndrome. I have a doctor’s appointment coming up and will ask to a Lyme’s test to rule it out as a possibility. Thanks for the info.
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I think Lyme should be questioned in any CFS or FMS diagnosis just from my own experience. If I hadnt found the CFS doctor I did off the internet! then I also would – I believe – still have only that dx and not one of the 8 doctors I saw before even said the word Lyme. Not all CFS or FMS is Lyme but statistically many times Lyme is the underlying infection. If you have any questions or whatever Please do not hesitate to contact me!! I’ve been navigating the Lyme waters for about 4 years now. Also check out ILADS.org and Lymestats.org Are you in the US? If anyone says infectious disease doctor or IDSA drop them like a hot potato. Good luck and let me know how it goes. What treatment is your niece doing?
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Yes, I’m in Canada. My niece was bed-ridden, unable to walk or speak in the beginning of her diagnosis and her treatment wasn’t satisfactory so, as I recall, her parents brought her to a private doctor specializing in Lyme. They had to pay out of pocket for this doctor as our provincial medical insurance doesn’t approve of and, therefore, don’t cover such an aggressive antibiotic treatment. Not sure, but I think the insurance governing body only recommends the pulse treatment and otherwise less aggressive treatments than this private doctor. The Canadian foundation for Lyme Disease that I could find online is called CanLyme.
Nonetheless, she did improve somewhat but not what they hoped. Time has improved her more than anything at this point (7 years later) with a lot of physiotherapy and brain-mapping, etc. She’s now walking and talking a little but still relies on her wheelchair quite a bit.
It looks like treatment is all around a little lame for either CFS OR Lyme which is a shame as both are becoming more and more common.
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Oh poor girl. It is shameful so many Lyme patients do not get any or adequate care. Here in the US the infectious disease organization has set the guidelines for Lyme treatment as 3-4 weeks of abx. Chronic Lyme is denied by mainstream docs here. Most everyone I know also has to pay out of pocket for treatment for an LLMD because of this. I have been so very lucky thus far in that there is an LLMD here in Houston -she was the doc I picked off internet for CFS treatment – and she takes insurance. I’ve recently added another doctor who is more holitstic integrative protocols and located 3+ hours away. I spend way more there for the tests not covered by insurance and natural treatments not covered. I hope your niece continues to improve! It is a long haul for many of us. It blows my mind how Lyme patients are just ignored but I only think of it once in awhile otherwise I get too angry.
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