Lyme disease and neuropathy
I think I have been misdiagnosed for the last year. I think I have Lyme disease causing my neuropathy. I was tested negative but all my symptoms point to Lyme. My neoropathy came on in less than 60 days from being fully healthy. I have neck pain, night sweats, irregular heart beat, tiredness and joint pain along with neuropathy that comes and goes. I noticed a small rash/discoloration on the inside of my thigh which is spreading, Can you test negative but still have Lyme disease? I don't think you get RA in 60 days, I was riding my bike 10 miles a day just prior to all this. No problems ever with neuropathy or RA. I am at my wits end. They even recommended me having neck surgery for a bulging disk, I have had it for 15 years no major issues, slight pain and mobility issues but nothing Major. Anyone have any specialty with Lyme disease.
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I have Lyme like and neuropathy symptoms, aches and intermittent pains muscle twitch/pulsations, neck pain, fatigue, brain fog, night sweats at times, low normal B level – before all this I was a seemingly healthy person although low energy struggles and occasional low D levels but not overweight or like I am at this point. My first western blot Qwest test showed negative for the 4 Lyme disease/coinfections they listed most of which I had never heard of. I don't know if it warrants a further test from Igenex- getting mixed info on that but like others on here would just like to see if antibiotics changes anything. This has made a major impact on my mental well being and my husband has to carry a bigger load for the two of us due to my limitations. Any insight is appreciated.
Hello @aeg73, welcome to Connect. @ndttech @cwallen9 @carnes @basslakeview @sharonryanbless who have mentioned Lyme Disease may also have some input on your questions on a Lyme disease/neuropathy connection.
You might find the following video helpful — What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
Are you currently taking any medications for treatment?
Maybe you should repeat the lyme disease blood test. See what it says now. Especially if it has been awhile. Lori Renee
Unfortunately repeated Lyme test twice and negative always
No medication because they don't know what to treat
I have had neuropathy in my back and arm from Lymes the test never showed positive for Lyme. If you want to know for sure the test cost over $300. I was totally unable to live and in terrible pain- the pain came on instantly. I was finally given Gabapentin- it gave me my life back. I do drink coffee which helps with the fatigue. If you want information and treatment for Lymes you have to go to a doctor that deals with it. Regular doctors really don’t know. Rennie
Thanks John, I will check it out TED talk). I feel like some "thing" whether from Lyme or Epstein Barr or Frozen shoulder the latter two I got diagnosed with wreaked havoc on my whole body. I'll check out the Ted Talk and have a Lyme literate specialist appointment but not until end of July. Some MD's use that one test as the gold standard if it shows no bars that it's a definite no but it didn't test for other common co-infections either so I honestly don't know what to make of it. Lots of testing, lots of out of pocket/deductible payments, etc. -at this point with no major connections.
But typically MD's give out meds like it's candy and I'm not one to ever ask for meds so I was hoping to see if Doxy would change anything, it's frustrating.
@cbrackle Was your first initial test a Western blot? Mine came back negative so I'm torn on spending the money on Igenex or German lab, getting mixed thoughts on that. I hope your are able to fight your chronic lyme with some positive outcomes/changes. Kindly, Amy
I have met someone that did not test positive for Lyme the one year later tested positive . So keeping checking !!