lyme disease and episodic flare-ups

[Todd36]

Hello everyone,

do people with lyme disease have episodic symptom flare-ups, or are the symptoms generally chronic and consistent?

i've been experiencing a number of symptoms similar to what's been described for lyme disease i.e., diffuse fasciculations, neuropathic pain, and muscle cramps, as well as many others.  I had a brain and C-spine MRI in April 2008 and Jan 09, respectively, that were both normal, and I’ve had an EMG and a NCS in Dec 08 that were normal too.  My blood work for vitamin B12, potassium, and magnesium deficiency is normal.

i don't recall a tick biting me and I live in Oregon where lyme disease isn't that common; however, before the nasty symptoms developed last December I was traveling remote areas of Bhutan and Thailand in Oct/Nov 2008, and I could have unwittingly been bitten by a tick somewhere along the way.  I’ve unsuccessfully tried to locate a GIS map showing the distribution of lyme disease, albeit the literature suggests it does occur in parts of Asia (not sure what part).

Your opinion is appreciated!

Rgds,
Todd

[patsy10]

I understand the travel part.  At my worst I was afraid to even go on vacation here in the US.

Ticks are everywhere and like Jackie said they don't read maps very well.  It's supposedly not common in my state either but funny, it's endemic in my neighboring state PA.  I'm about 1.5 hours from there.  They must stop at the Ohio/PA line because I was told  "there's no such thing in Ohio".

[JackieCalifornia]

Try to find a doctor familiar with Lyme to do the testing and to take your history.  There is much disdain in many doctors toward even the idea of having Lyme -- and it is as a result a widely underdiagnosed and misdiagnosed disease.

Lyme-carrying ticks don't read maps very well, so the idea that they can't be in various places is not logical.  If you read the posts on this website, you'll see Lyme patients from all parts of the US and Canada, and there is a variation on what we call 'Lyme' (it's all borreliosis) in Europe and I believe in Asia as well.

Do your own research and be persistent in getting answers; good luck to you.

[Todd36]

thanks for your feedback.  i just made an appointment with my PCP to get tested for lyme.  if that comes up negative, i'm going to be at a loss for what i've been dealing with.  this is all very frustrating.  although may of my symptoms have either resolved or decreased in intensity, i'm still not 100% normal.  the worst part is that i'm carrying on with my work and there is a good chance I'll be heading overseas again to a developing country where the medical services are sub-standard, and i'd hate to get there and have another fare up.  I just want a dx so i can treat whatever i'm dealing with and move on!!

thanks again,
todd

[wonko]

I think I've responded to your post in another forum, so hello again.

My Lyme disease, before diagnosis/treatment, did exhibit relapsing/remitting behavior.  

I first noticed neurological symptoms in summer '07, but all were mild and didn't endure.  Then in Jan. '08 I had a more acute attack that lasted abut a month.  Then everything quieted down on its own, and I felt about 95% normal again, except I'd still tingle in heat and a few other minor effects.  Then in late March, my symptoms suddenly returned and worsened.

From that point, I didn't have any other remissions or relief without the aid of medications.  I didn't develop some of the more classic Lyme symptoms (joint pain, persistent cough) until Fall '08.  It can present in a wide variety of ways.  

My Lyme doctor, when I gave him my history, commented that many of his patients have flares in their Lyme symptoms, which can be brought on by stress or sometimes just unknown causes.

I don't know what my "normal" level is now, unlike patsy10, I'm in my initial treatment.  I am hopeful for a full or nearly so recovery, but since I was sick for at least 1.5 years before starting treatment, I don't know if I'll escape relapses in the future.

I too don't recall a tick bite in my life.  I've read that anywhere from 10-40% of Lyme patients do not recall the bite.  (The figure varies a lot on source.)  I've also "met" or read testimonials of plenty of folks online who got Lyme in places where "there is no Lyme."  

[patsy10]

I would say chronic with flare-ups.  I"m never "normal" but was doing ok until recently.  See my post from today.  Chronic muscle and joint pain with lots of generalized stiffness would be my normal, stable daily condition.