Good Book - just very overwhelming with all of the information - it seems everything could be blamed on Lyme… I was diagnosed with Lyme many years ago and was supposedly treated with Doxiciclene, but I truly believe it has never fully left my system… I believe that once we are diagnosed with Lyme we are never the same again…I have developed so many medication sensitivities, serious small fiber neuropathy (I have the hereditary neuropathy, but I think the Lyme activated it), CRPS, DDD - my body is just breaking down and I am exhausted.
my heartfelt understanding and sympathy, a fellow sufferer, I am suffering with agonizing pain and many other symptoms as I write this now, there simply are no words to describe the endless suffering of late stage neurological lyme/ multi system infectious disease- most important word to remember is COINFECTIONS, they always come with lyme and are actually now considered the primary infections, with lyme being secondary, they can be devastating in and of themselves and combined with lyme combine synergistically not just cumulatively to form new disease patterns, wishing you strength, courage, and supportive people in your life you will need it
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I live in AZ too, I was just finally diagnosed with EM after 2 and a half years. It’s nice to know I’m not alone.
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Lyme never leaves your body …it’s with you forever all LLMDs doctors can do is simply put it back into remission
And yes coinfections is the key…these coinfections bacteria are a beast…usually it’s BARTONELLA…the one that likes to go to the feet and hands
These bacteria can not be killed with a short amount of antibiotics…you neeed a way longer course once it’s gone neurological
Then to top it off the test the regular doctors use is old and way outdated …it’s very inaccurate
Even according to the CDC.
Lyme has 300,000 cases a year according to the CDC
Lots of people are told they don’t have Lyme
When in fact they do … it’s very sad
Lyme is a clinical diagnosis by a good LLMD
You can’t rely solely on the test results
You really have to test with the most accurate test out there
To find out if you have Lyme or seek out a LLMD
( Lyme literate medical doctor )
Lyme is a very serious disease…
and it can mimic many symptoms of well known diseases
And affect any part of the body
causing a lot of neurological damage and atrophy
Many Lyme people get misdiagnosed
I too have had high b6 of 145
I have been seen by a neurologist at Stanford Medical Center.
He conducted an autonomic sweat test and found my sweat glands
are not working properly ( minimal sweating which I sorta knew).
Apparently there is some neuropathy involved which probably has
a genetic basis. My vitamin B-6 is no longer elevated. I manage
my symptoms by taking cold showers, remove shoes when driving,
have the AC turned up and remove shoes/socks when sitting.
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I’ve been seen by neurologist she just did a skin biopsy waiting for results she suspect small fiber neuropathy has triggered my erythromalagia. My feet have been flared all the time for about a year now always in pain now my hands are flaring I’m a hairstylist washing hair is almost unbearable hoping to get a diagnosis
hi Christie,
I had a small fiber nerve biopsy performed by a local neurologist.
It came back negative.
The Stanford neurologist suspects that it might not have been performed
correctly. However he feels that there is some neuropathy in my case,
based on my sweat gland dysfunction and current symptoms. He feels that
there is a genetic basis to the neuropathy and over time ( I’m 65 ) the
symptoms are now
more pronounced.
He claims there is no treatment at this time, just management of
symptoms.
He did say some some patients are looking into CBD oil.
So you might want to ask your neurologist about the possibility that
the small fiber
neuropathy biopsy comes back positive. What is the followup to that result?
Mikeso far i didn’t had a fiber nerve biopsy, however my neurologist said that there are high chances that soon i will need one. that’s why i’m now reading this thread and that’s why i wanted to say that i’m very thankful to you guys for writing all these stories… they help me… to prepare.
So those of you that say em could be from late stage undiagnosed lymes… Does it go away once treated? Seems like, and only just from reading posts here that no matter what the cause, lymes, genetics, toxicity, meds… That once it starts that’s it…
Mine was caused by rheumatoid vasculitis. I can’t say it’s gone completely but far less severe since I had treatment for rheumatoid vasculitis
Waiting on results should be back in couple of weeks .the neurologist also had more blood test don’t including b12 hoping she can make a diagnosis since two other doctors have just said suspect erythromalagia I’m 42 and my flares are getting worse I’m flared anytime I’m standing or sitting with feet down and now with my handsd flaring and the pain is real bad not sure how much longer I can do my job .right now I take 2700 mg of gabaphentin and 60 mg of cymbalta…
So official diagnosis from neurologist erythromalagia which is what all the Dr’s. Suspected primary idiopathic all other tests biopsy negative so I’ve been on 2700 mg of gabaphentin and taking cymbalta there going to raise to 3600 mg of gabaphentin and a topical pain gel neurologist is also going to suggest a narcotic for break through pain since I’m constantly flared but worse when I stand for my job it’s also affecting my hands which I’m a hairstylist so washing clients hair is so painful if this doesn’t help or get better going to have to see a M.D. to start disability process
I had a biopsy done on my foot and leg along with a SFN test and my foot biopsy came back as abnormal. All my neuro said was “I don’t know what that means.” Then told me to follow up with him in like 6 months. Smh. What am I suppose to do with that? So, I’m not sure what that means either. My pain management doc says I have symptoms of EM but won’t give me a diagnosis. sigh
Here in Massachusetts only two doctors perform this biopsy. They take a little piece of skin off the bottom of your leg. My test came back negative for small fiber neuropathy. Dr. Anne Oaklander of Massachusetts General Hospital runs a nerve clinic that does this and she has a bunch of literature and research online you can google her name etc. and read about it. She told me that over fifty percent that have EM have small fiber neuropathy. I am not sure that is an accurate amount as she probably is only considering her patients and she doesn’t accept anymore.
Positive skin biopsy for SFN. Burning red feet when exposed to heat. That and loss of hair on toes and the doc goes. I know what you have. EM. I had never thought about the hair loss. Did others lose the hair on their toes after EM?
Hi Gwadley, yes, hairloss is a common effect of EM. If you’re a male you will notice it much sooner 
But even the tiny hairs that I had on my toes, have disappeared since my EM has started.
I wish you the best, SFN is awful as it is, with EM it is horrible.
What was your treatment for rheumatoid vasculitis?
My treatment for rheumatoid vasculitis is Rituximab infusions. I have them every 6 months 2 of them a 2 weeks between.
It’s only been approved for rheumatoid vasculitis in the UK for a couple of years and only if other things have failed. It was originally a cancer drug.
I’ve just looked at my toes & the hairs have gone ? Xx
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