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Lyme Disease
A MyFibroTeam Member asked a question 💭

I heard you can have lyme disease but not test positive for it if you have a test too late like weeeks later or something and then if its late theres no cure the way there is if it is caught quickly.... is this accurate?

posted January 3, 2020
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A MyFibroTeam Member

You should only have an immunoblot (such as an FDA-approved Western Blot or striped blot) test done if your blood has already been tested and found reactive with an EIA or IFA. The IgM Western Blot test result is only meaningful during the first 4 weeks of illness; so if you have been infected for longer than 4 to 6 weeks & the IgG Western Blot is still negative, it is highly likely that the IgM result is incorrect (a false positive). This does not mean that you are not ill, but it does suggest that the cause of illness is something other than the Lyme disease bacterium. If you go see an Infectious Disease specialist, they can test you for many different illnesses. Back in 2014 I was bitten by a tick and by a deer fly. I called my DR and told him but he wasn't concerned. I soon started having symptoms and getting sicker. Some of the symptoms were the same as fibro but others were not. After 9 mos suffering with it, I was at my Neuro Dr and mentioned my symptoms. He immediately sent me over to infectious disease for emergency consult, they drew 9 vials of blood and a week later, I found out I had Tularemia. I had 11 days of IV antibiotics at the hospital to get rid of it. It was caused by either a tick bite or a deer fly bite. Imagine that. If you feel you are having symptoms other than those associated with Fibromyalgia, talk to your DR about seeing a specialist to have blood test ran.

posted January 3, 2020
A MyFibroTeam Member

I've lived in the Rocky Mountain Region for the passed 100 years so yes, I have heard of it and other ticks diseases but it was really realized when I heard Avil Levine had it. I didn't listen to her until last year with her then new song, Head Above Water where she sings how bad her experience had been trying to survive it. I was tested since it's symptoms are similar
She has an organization to bring awareness about it

posted January 3, 2020
A MyFibroTeam Member

I agree with Shelby. Before my fibromyalgia diagnosis, I was tested for Lyme. Some of the symptoms are similar to fibro, but not all. There is a good documentary about Lyme called “Under Our Skin.”

posted January 3, 2020
A MyFibroTeam Member

TaffSpur, I’m sorry to hear physicians in your area don’t acknowledge Lymes disease. There’s nearly as much lack of good information on this disease as fibromyalgia. You can try showing pages like this:
https://www.iamat.org/risks/lyme-disease#
US doctors pull the same crap. My guess is because the science isn’t settled on how to treat older infections, nobody wants to touch it. In the states, if your infection isn’t new you have to find a specialist with an interest in treating older infections. They’re usually collecting data for research. My rheumatologist (who I’m trying to replace for many reasons) believes you have to live on the east coast to catch Lymes. Well, tell that to my Western Blot, or Avril Levine, or Justin Bieber! Considering that an untreated Lyme infection with my genetics pretty well guaranteed I’d end up like this (a few of my better docs have said as much), this denial mentality is NOT helpful! If you suspect it, find a good specialist. Old infections aren’t in the blood, so the labs must be performed by technicians, not machines—they aren’t sensitive enough and you’ll get a false negative. Also, if you do test positive, ask for IV antibiotics over oral and make sure they monitor your organs. Furthermore, a specialist with Johns Hopkins is conducting clinical research on 10 essential oils that are more effective at killing the Lyme bacteria than current pharmaceutical antibiotics. This research is also important for application towards other stubborn and resistant bacteria infections. Hey, plants have been fighting these bugs a lot longer than us. Lot of info, hope some of it is useful.

posted April 6, 2020
A MyFibroTeam Member

In the UK they barely even acknowledge it exists, Doctors pretty much would never test for it. I was bitten by something about 7 years ago and came up in a huge red welt, had symptoms since but they don’t listen.

posted January 12, 2020

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