First noticed strange nerve sensation in left arm shortly after camping trip (1998-no recollection of tick bite). Over the years, sensation progressed to all limbs. Have also had tremors, starting in hands and spreading to legs. Other symptoms include: dizzieness, plugged ears, tingling in hands and feet, burning sensations, pain in hips, etc. Have seen four neurologists over the years, claiming I am normal. MRIs of brain, spine, lower back normal. Nerve conduction study normal. Blood tests normal. Recently tested positive with Western Blot, but because there is no single definitive test for lyme, how do I know this is what I really have?
Posted by WildCondor (Member # 434) on :
Welcome Baron....
You will find plenty of answers here. It sounds like you are at the very beginning of your journey with this. You may not have Lyme, but if you do, we can point you in the right direction as far as diagnosis and treatment.
The first step would be for you to write down your health history. Include the time of the possible tick bites, any tick exposure(camping trips) all your MRI's and copies of all your relevant lab tests. Put it all together, and then fill out a Lyme disease symptom checklist.
The next step would be to get a full diagnostic workup by a Lyme Literate MD (LLMD). I see you are in California. Email me, [email protected] I can help you find a doctor.
Then you can get tested for Lyme and tick- borne co-infections. The testing for Lyme is not very good, so Lyme IS a clinical (symptom based) diagnosis.
Once you see a LLMD, and you get all the test results and a full checkup and review of your symptoms and history, there is a variety of treatment options available. We'll get to that later!
Welcome...and good luck!
Posted by pmerv (Member # 1504) on :
Tonight I am looking only at posts that have zero responses!
You can't be sure it is Lyme, but many people with Lyme have negative workups. Doctors unfamiliar with Lyme complain that all the patients have different complaints. Doctors familiar with Lyme see that as a pattern - all their patients have multisystem complaints that come and go and are typically vague and not diagnostic of anything. In addition the tests don't show anything.
At least you have a positive blot, which shows reactivity to the Lyme spirochete. This means you have probably been exposed at some time in the past. If you have never been treated, it seems likely that you might indeed have it.
At this point you can either learn to live with it, in which case it might get worse. Or you can keep seeking, which might cost a lot and not tell you much. Or you can find someone who will treat you for Lyme to see if things improve.
Posted by Geneal (Member # 10375) on :
I know that I went through a questioning phase
Even after diagnosis with a Lyme Literate MD.
Is it really Lyme?
I only had one positive band on WB---IgM 23.
Had 54 out of 75 symptoms listed for Lyme disease.
I also had just about every known blood test known to man.
Nothing else was positive.
I guess the kicker for me was my response to antibiotics.
The herx reaction was pretty telling.
I am getting better (although slowly) on antibiotics.
Gosh, I shudder to think where I would be physically if I had just accepted
The Post Traumatic Stress Disorder diagnosis....
You need to see a Lyme Literate Medical Doctor.
For diagnosising and proper treatment.
Hang in there.
Hugs,
Geneal
Posted by davidx (Member # 8326) on :
Well you've only had 1 test come back "not normal" and that was your Western Blot for lyme. You should definitely continue to seek medical care if your symptoms are effecting your quality of life.
It would be good to see a lyme literate dr if you can.
-David
Posted by Michelle M (Member # 7200) on :
I'd see an LLMD and be REALLY tested for lyme.
Since you probably didn't use IGeneX for testing, you have a incomplete picture.
You likely weren't tested for any coinfections such as babesia, bartonella, ehrlichia, etc... those can be as devastating as lyme itself and it's more likely that you're coinfected than not.
If you had a good western blot done and saw band reactivity at lyme-specific markers, it would be hard to imagine anything else at fault!
A good LLMD will always rule out other things and it sounds as if you've taken care of that.
Get an appointment with an LLMD. It can save your life!
Michelle
Posted by CaliforniaLyme (Member # 7136) on :
I had tick bites rash and onset of illness so it was pretty clear!!! What I didn't know was I had Babs because it was sero-+negtaive- HME was positive though- local lab-