How often is Lyme misdiagnosed?

[Erin]

Hi...

So far I've not been diagnosed with anything, pretty much just reading a lot about certain disease (MS and Lyme mostly)

Ok, I'm actually obsessing about figuring out what's wrong with me...to the point that I think I'm wearing out my poor computer.

I came down with Optic Neuritis in August of this year, and earlier this year in April I developed a weird numbness of my right hip that moved down my leg to my knee and past it...it's also gone across the front of my abdomen and into the other hip and leg. (the neuro I saw for the ON said the hip thing is something called Meralgia Paresthetica)

When I got the ON, the opthamologist suspected MS, so off I went to the MRI. They found two little teeny spots, but said they were not indicative of MS, but probably had something to do with my long history of migraines.

So, I've still got the ON and the weird sensory numbness in my hips and leg...and a lot of worry that I might have MS.

I found a list of symptoms for Lyme and several of them leap off the webpage at me. http://www.wildernetwork.org/faq038.html

headaches
Recurring sore throat (sometimes only on one side)
Vertigo
recurring infections (urinary tract, and otitis media)
development of new allergies
allergic or chemical hypersensitivities
gout-like pain in toe

I checked off several more on that list, but these are the ones that are making me think "I wonder???"

I get migraines...sometimes one or two a month, sometimes more, and sometimes it'll be months before I get one.

I get sore throats a LOT. I just recovered from one that ended yesterday. (it was only on the left side of my throat) and I had one (same side) the week I came down with Optic Neuritis.

I've gotten vertigo off and on for years and years and not known the cause. Doctors usually tell me it's otitis media (ear infection) and give me antibiotics. (the UTI is a new symptom...not sure if they're UTI's only had a doctor check me once for it so far)

I've developed a lot of new allergies over the past ten years. They were really bad until my dog died in April when they seemed to have lessened in severity. I pretty much blamed my dog...I think I might be allergic to dogs and being around him all the time might have been making me a lot more sensitive to my allergies to scents and chemicals and certain foods. Just being near shellfish in a grocery store (while they're cooking it for customers) seemed to always set off a bunch of itchy hives, but now it doesnt seem to bother me much. (I'm still not brave enough to eat it)

That last symptom of the gout-like pain in the toe. I've had sore big toes for at least 15yrs. When I visited a doctor for a ruptured achilles tendon about 6yrs ago, he told me it was probably arthritis...checked me for Rheumatoid, was negative and was told to just take ibuprofen and put ice on it when it hurts.

Does anyone think I should have a lyme specialist examine me, even if it is just to rule out lyme disease???

oh yeah. By the way, I do remember getting a tick on my right shoulder (just behind my neck below the hairline) when I was about 12 or 13yrs old. (I'm 37 now)

And up until April, when my 100 pound bouvier des flandres named TinyMonsters died, I was outside a LOT. (I live in Nebraska) and I've had to take several ticks off my dog at times, so I have to wonder if I had one or two of the nasty beasties and didnt notice them.

Should I get checked out, or what? and how do they test for Lyme?

[Sonsie]

Tick-brone diseases (Lyme always involves several different infections because ticks are infected with more than one disease) are routinely misdiagnosed. Correct diagnosis is an exception. I can think of one person I've met over the last three years who was diagnosed correctly. Sadly, her doctor treated her incorrectly, and she now has chronic Lyme disease. She was told by an LD support group( that she attended to learn about the disease) how to extricate herself from this, but she failed to do so.

Reasons for failure to diagnose are too many to list, but here are the main ones: Doctors do not understand what tick-borne diseases are, they follow the IDSA (whose guidelines are not based on fact), they run tests because they fail to comprehend that testing cannot be a diagnostic tool, they run the wrong tests, they use labs that don't understand how to do tests, they fail to realize that tests results for the Elisa test (which is the wrong test to start with) in women are not accurate, they believe a bull's eye rash must be present, they believe the patient is a psychiatric case.

Here's an article about misdiagnosis: http://www.publichealthalert.org/4-Page-4.html

Good sites to understand tests include, in no particular order:

http://www.anapsid.org/lyme/lymeseroneg.html (why false negatives occur)
http://www.wildernetwork.org/accurate_test.html (test accuracy)
http://www.igenex.com/formset4.htm (IGeneX, Inc.'s explanation of what tests to order)
http://flash.lymenet.org/ubb/Forum1/HTML/022767.html (Western Blot tests)

Best sites re: symptoms and accurate information:

http://www.ilads.org
http://www.lymediseaseassociation.org/
http://www.lymedisease.org/
http://www.columbia-lyme.org/flatp/lymeoverview.html

Research: http://www.columbia-lyme.org/index.html

Excellent journal for regular folks: http://www.lymedisease.org/lymetime.htm

Hope this helps!

If you can, find a LLMD and get assessed. Going to a doctor who doesn't understand tick-borne diseases (or worse, one who belongs to IDSA) usually is a waste of time and money.

[Buttons2]

Hi Erin, I know you are searching for answers (so am I). One suggestion I have is to get as many of the symptoms listed as possible (different sites will have various symptoms), you should be able to come up with about 100 total.

Next step would be to check off any/all that apply to you now OR that you'ved had in the past. From my research I've determined ONLY Lyme/co-infections have some of the strange symptoms you might discover. As an example: the feeling of water running down legs,if you've ever had this you will know what I'm referring to! Another thing that stands out (for me), is the high number of symptoms that literally come & go in seconds....to weeks.

I also had a Bouvier, wonder how on earth you ever managed to find a tick???:rolleyes:

One word of caution, be very careful about talking to your PCP about the possibility of Lyme disease,(or the dentist,eye doc,etc). You will be very disappointed by their reaction & they just might figure you are too looney to bother with!

You've got alot of reading to do....wishing you good luck!
Buttons

[Erin]

the ticks I was able to find on TinyMonsters were found by pure luck. Usually found them a few days after we'd had him groomed (totally shaved down for summer) and he'd go play in the yard and end up with a tick on the back of his neck.

If no one's ever had a bouv, you could lose your car keys in their hair when it's all grown out. We kept Tiny shaved down most of the time.

they were usually pretty massive ticks by the time I saw them too. (ewww...hate ticks!)


I miss my furry wookiee, but I dont miss the ticks he'd occasionally acquire.