Jen, I remember you well and am glad to hear from you again. I think your case is a perfect example of making sure that you listen to your gut instinct about
what is going on with you and making sure you continue to get things checked if you don't think the docs have it right. Both lyme and lupus mimic so many other diseases that they are pretty tricky to diagnose.
I really hope your treatment for lyme works well for you and that you get some real relief. What kind of testing did you get to show you had lyme? I'm asking because we may get my son tested and I know that some of the tests are more accurate than others.
I've had the usual ups and downs with lupus - some days I feel pretty good and some days are pretty rough. I've had a super busy and stressful week so I'm not feeling great now, but I think if I rest up for a few days I'll start feeling better again.
Let us know how the lyme treatment works for you. Take care and thanks for the update.
yeah I always felt uncomfortable about the lupus diagnosis. I heard of lyme and when I researched it to death, I figured I owed to myself to get tested.
Testing in very faulty. There is the Elisa test which is the common test give for lyme. But it's not very specific. Most people, even with full blown lyme, test negative.
I sent my blood off to Igenex in Cali. They are a lab that does only tick born illness. I paid a lot of money but it was worth it.
I also did the Elisa here in canada just to see. That came back negative.
The test from Igenex game back CDC negative but showed so many bands for lyme that the LLMD (Lyme literate dr) said it was a sure sign I had lyme. The CDC requires many bands to be + before they give u a + result.
Many ppl who have been cdc negative have started meds, retested and they came back full blown CDC +.
The bacteria for lyme is so tricky.
I only just saw the LLMd this past monday. This dr also had lyme and her dr's told her for 2 yrs, she was nuts. She finally found a dr to take her seriously and she was tested at Igenex and was +. She is now symptom free.
She says I have 90% of the lyme symptoms as well. This is why that plaq took me for a loop, I was herxing on it. Herxing being when the abx kill the bacteria, they become toxic and the toxics are overworking the liver, but it means it's working.
I spoke with a women who was diagnosed with Lupus 6 yrs ago and was tested for lyme. She was +, treated and now she's been symptom free for many years. I swear, all the unknown illnesses scare me.
Also many MS patients have been shown to have lyme and not ms.
One day there should be a reliable test for lyme and everyone should be tested. It really does mimic so many other illnesses.
You keep your chin up..........keep healthy, eat well and never give up.
I'm really happy you ladies are hanging in there