Lyme Disease and Chronic Parasthesia

[BlimeyLymey]

Before being diagnosed with Lyme I suffered from paresthesia when working out or getting hot and now that I've been diagnosed, it is so much worse.  I also have fibromyalgia as I've been told and have a sore back all of the time (along with many osteophytes (spurs) in neck).  The Prickling is a constant now and mostly located on my whole back, neck and head areas.  When I work, do housework, walk, stress, practically move, it gets worse.  I also get extremely hot all of the time (in menopause, but don't think it's related).  I finding it very hard to work or function with this and am worried why it might be so bad.  I also get pains on my upper side scalp that I can usually deep massage with finger tips to ease the pain and loosing a bunch of hair in spots in the same areas.  Does anyone else experience this?  Is this all part of Lyme?  Could this mean lesions in my head?

[Ricobord]

My LLMD included "unexplained hair loss" on the symptom check list at my consultation.  Also, on the special features section of the Lyme documentary "Under Our Skin", writer Amy Tan talks about her hair coming out by the handfulls.  It's not a common symptom, but it does happen.

[JackieCalifornia]

Welcome to MedHelp Lyme --

Sorry to hear about what you are going through.  A few comments/responses to your post:

"Before being diagnosed with Lyme I suffered from paresthesia when working out or getting hot and now that I've been diagnosed, it is so much worse."

Lyme comes and goes seasonally and for other reasons the docs aren't entirely sure of.  If your immune system is rundown, that may allow the infection to flare up too.

"I also have fibromyalgia as I've been told and have a sore back all of the time (along with many osteophytes (spurs) in neck)."

To my understanding (and I am not medicaly trained), fibromyalgia is not a defined disease -- it is a syndrome, meaning a collection of symptoms with no known cause.  There is some thought that fibromyalgia is the label attached by those who do not 'believe' in Lyme, because the symptom set is strangely similar.  

"The Prickling is a constant now and mostly located on my whole back, neck and head areas.  When I work, do housework, walk, stress, practically move, it gets worse.  I also get extremely hot all of the time (in menopause, but don't think it's related).  I finding it very hard to work or function with this and am worried why it might be so bad.  I also get pains on my upper side scalp that I can usually deep massage with finger tips to ease the pain and loosing a bunch of hair in spots in the same areas.  Does anyone else experience this?  Is this all part of Lyme?"

Could be Lyme.  I would suggest finding a Lyme specialist for a work up.  And by Lyme specialist, it doesn't have to be a particular specialty, but instead an MD with an open mind.  Unfortunately infectious disease docs and neurologists are often in the "It can't be Lyme" camp, so searching around for an open minded doc is necessary.  

"Could this mean lesions in my head?"  I doubt it, but you should see a competent doctor to figure out what is going on.  Lyme messes with the whole endocrine system, hence fluctuating body temp, etc.  Lyme can infect the nervous system, which includes the brain, giving some of us more neurological effects than others have.  That's part of the difficulty in diagnosis:  the disease (along with an assortment of other diseases carried by the Lyme ticks) have variable symptoms from person to person and in the same person over time.  So, yes, Lyme can affect the nervous system and the endocrine system and the muscle and joints, but it causes inflammation, not lesions.  

Doctors who specialize in Lyme and have a broadminded approach to it are sometimes called by us the patients as "LLMDs", short for Lyme Literate MDs.  An LLMD would take your history, do an exam, take some blood and test for what (based on your symptoms) might be infecting you, and go from there.  NonLLMDs might do an MRI on your brain to see what's up, but an MRI does not diagnose Lyme -- MRIs look for lesions, not for the swelling that Lyme can cause.

And I wouldn't think hair falling out is directly related to what is or is not going on inside your head.  Try not to worry, and just find an LLMD for a work up -- that's what I would do.  Lyme also, by irritating the nervous and endocrine systems, can create anxiety in its sufferers, as it sure did in me.  That makes it all the harder to deal with, I know, and tends to make the docs brush it off as a symptom of the disease, and instead to call it menopause or simple anxiety ... and we know how docs love to call women neurotic!!!

I see you are outside Little Rock ... if you need help finding an LLMD, let us know  --  best wishes --