Lyme disease and neuropathy

Posted by tdemaria @tdemaria, Dec 30, 2018

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.

Hi @tdemaria, I have no specialty with Lyme disease but found a few articles that may provide some information until a member with some experience shares some suggestions for you.

Mystery disease unraveled by Stanford neurologist
https://med.stanford.edu/news/all-news/2013/02/mystery-disease-unraveled-by-stanford-neurologist.html

New Treatment for Chronic Lyme Disease
http://www.synergyhealthconcepts.com/chronic_lyme_disease/

Lyme Disease Action Neurology & Psychiatry
https://www.lymediseaseaction.org.uk/about-lyme/neurology-psychiatry/

From what I understand Lyme disease can be hard to diagnose. Have you thought about seeking a second opinion?

Liked by aeg73

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@johnbishop

Hi @tdemaria, I have no specialty with Lyme disease but found a few articles that may provide some information until a member with some experience shares some suggestions for you.

Mystery disease unraveled by Stanford neurologist
https://med.stanford.edu/news/all-news/2013/02/mystery-disease-unraveled-by-stanford-neurologist.html

New Treatment for Chronic Lyme Disease
http://www.synergyhealthconcepts.com/chronic_lyme_disease/

Lyme Disease Action Neurology & Psychiatry
https://www.lymediseaseaction.org.uk/about-lyme/neurology-psychiatry/

From what I understand Lyme disease can be hard to diagnose. Have you thought about seeking a second opinion?

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I will talk to my Dr this week. I dont know why they dont just give the antibiotics and see. Seems cheap and simple way to rule it out.

Liked by aeg73

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HI, @tdemaria – I'd like to add my welcome to Mayo Clinic Connect. I believe members like @ndttech @cwallen9 @carnes @basslakeview @sharonryanbless who have mentioned Lyme Disease may also have some input on your questions on a Lyme disease/neuropathy connection, as well as whether one may test negative but still have Lyme disease.

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@tdemaria,
I have Lyme disease and bilateral peripheral neuropathy.
Can you tell me what test you had to test for neuropathy?
I too had a negative test result from my initial test for Lyme.
Then I went to a Lyme Literate Doctor who initially diagnosed me with Lyme based on my symptoms. Then confirmed that diagnosis by sending my blood off to one of two testing companies that are not supported by the CDC and so were at liberty to show all the test results (I sent it to Igenex in Palo Alto, California). Mine came back with several positive markers of Lyme.

I had it restested a few years later and again showed several positive markers for Lyme.

I do not know for sure that my neuropathy was caused by the Lyme, it had started many year before, but based on symptoms I likely contracted Lyme when I was in my early teens.

I would suggest asking your PC Physician if he would send your blood out to Igenex and have it tested properly. Igenex has all the info on how to do it on their website.

I wish you the best of luck.
Carl

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@cbrackle

@tdemaria,
I have Lyme disease and bilateral peripheral neuropathy.
Can you tell me what test you had to test for neuropathy?
I too had a negative test result from my initial test for Lyme.
Then I went to a Lyme Literate Doctor who initially diagnosed me with Lyme based on my symptoms. Then confirmed that diagnosis by sending my blood off to one of two testing companies that are not supported by the CDC and so were at liberty to show all the test results (I sent it to Igenex in Palo Alto, California). Mine came back with several positive markers of Lyme.

I had it restested a few years later and again showed several positive markers for Lyme.

I do not know for sure that my neuropathy was caused by the Lyme, it had started many year before, but based on symptoms I likely contracted Lyme when I was in my early teens.

I would suggest asking your PC Physician if he would send your blood out to Igenex and have it tested properly. Igenex has all the info on how to do it on their website.

I wish you the best of luck.
Carl

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I have Lyme disease and blood testing was done by I Gene x. My Lyme doc and neurologist believe that my cidp and neuropathy are the result of chronic Lyme. I wouldn't have surgery until you rule out Lyme. For that you'll need to find a Lyme specialist. Your Pcp should at least give you a month if antibiotics. Good luck.

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@cbrackle

@tdemaria,
I have Lyme disease and bilateral peripheral neuropathy.
Can you tell me what test you had to test for neuropathy?
I too had a negative test result from my initial test for Lyme.
Then I went to a Lyme Literate Doctor who initially diagnosed me with Lyme based on my symptoms. Then confirmed that diagnosis by sending my blood off to one of two testing companies that are not supported by the CDC and so were at liberty to show all the test results (I sent it to Igenex in Palo Alto, California). Mine came back with several positive markers of Lyme.

I had it restested a few years later and again showed several positive markers for Lyme.

I do not know for sure that my neuropathy was caused by the Lyme, it had started many year before, but based on symptoms I likely contracted Lyme when I was in my early teens.

I would suggest asking your PC Physician if he would send your blood out to Igenex and have it tested properly. Igenex has all the info on how to do it on their website.

I wish you the best of luck.
Carl

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These are symptoms of Lyme disease and possibly other tick borne diseases. See a Lyme specialist.

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@sherlock

These are symptoms of Lyme disease and possibly other tick borne diseases. See a Lyme specialist.

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At this point I am almost positive I have lyme. The rash I have is a clear indication of stage 2 lyme erythema migrans. I would post a picture. My dog also had lyme at the same time all this started.

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I started HBOT (Hyperbaric Oxygen Therapy) for suspected Lyme disease on Dec 12th and it is helping reduce the pins/needles and paid that I have in both feet and legs. It's the only treatment that I have been able to find that can eliminate the spirochaetes (B. burgdorferi anaerobic bacteria). Take a look on http://www.oxygenunderpressure.com for reports about using HBOT for Lyme treatment, and also notice how similar the symptoms are to peripheral neuropathy.
The recommended hours for complete elimination of the bacteria is 98 hours, in 1.5 hour sessions each day. The cost here in Canada is $150 per session (so, just over $10,000 CDN in total), but I hear that it can be a lot more expensive in the U.S. and is not covered by the health care plans.

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My understanding of Lyme disease is that most standard blood tests for it are only 25% reliable., so it's quite possible that you got an "all clewar" from a blood test.
I have heard that IGen-X is very good, but that the authority is a lab in Germany that is the best in the world: http://www.arminlabs.com/…/tick-borne-diseases/lyme-borreliosis.
My HBOT therapy (which is the only reliable way that I know of to get rid of chronic Lyme disease is about half way through now and my PN symptoms have lessened dramatically (in my case, I am trying to rule out Diabetic PN because it came on so suddenly after being diagnosed Type-II diabetic, and progressed from my feet to my waist in less than a year. The HBOT therapy has driven down to my calves, so far.
I think the intense antibiotics are only effective if you catch the Lyme disease early on (within about 48 hours of the bite).. Hope this helps.

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@tdemaria

I will talk to my Dr this week. I dont know why they dont just give the antibiotics and see. Seems cheap and simple way to rule it out.

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I'm in a similar situation, just wanting to see if antibiotics does anything as I know this is something that hit my body and I'm trying to fight it off but also have some neuropathy but no MS Parkinsons signs, etc. Frustrating.

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@cbrackle

@tdemaria,
I have Lyme disease and bilateral peripheral neuropathy.
Can you tell me what test you had to test for neuropathy?
I too had a negative test result from my initial test for Lyme.
Then I went to a Lyme Literate Doctor who initially diagnosed me with Lyme based on my symptoms. Then confirmed that diagnosis by sending my blood off to one of two testing companies that are not supported by the CDC and so were at liberty to show all the test results (I sent it to Igenex in Palo Alto, California). Mine came back with several positive markers of Lyme.

I had it restested a few years later and again showed several positive markers for Lyme.

I do not know for sure that my neuropathy was caused by the Lyme, it had started many year before, but based on symptoms I likely contracted Lyme when I was in my early teens.

I would suggest asking your PC Physician if he would send your blood out to Igenex and have it tested properly. Igenex has all the info on how to do it on their website.

I wish you the best of luck.
Carl

Jump to this post

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.

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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.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Are you currently taking any medications for treatment?

Liked by Lisa Lucier

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Maybe you should repeat the lyme disease blood test. See what it says now. Especially if it has been awhile. Lori Renee

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Unfortunately repeated Lyme test twice and negative always

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No medication because they don't know what to treat

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