It wasn't my intention to ever post on a Lyme Disease site until I made a few comparisons with a friend who has it and the desperation to find a DX. I'll TRY to keep this as simple as possible.
It started with my left eye, almost exactly a year ago. I had been exercising, took a break and it looked like someone put a piece of wax paper over my eye for about 3 minutes. I, also, got very dizzy. Talk about freaky, eh?
A couple weeks later, I pass out in my car for an hour while smoking a cig just to wake up choking on my own spit, cig still in hand and enduring a massive tremor in my left arm. I call the doc, they call the ambulance.
"Must be anxiety," they said.
All the Cat scans and blood work were normal. Fantastic! A mystery! Where's Scooby Doo when you need him?
I talked to my sis about it, remembering, also, that my left arm had been acting funny. I couldn't drive with it, anymore, or talk on a cell phone. It was practically useless, feeling numb, fatigued, plagued with pins and needles or just in pain. She screams out "MS!" I was insulted... I thought she was messing with me until she couldn't stop crying 'til the next day. So I did my research and it got me thinking. Hmm...a lot of the things on that list sound pretty familiar...
Here are my symptoms to the current date:
Summer of 2007 - Bottom half of my face (about up to the bridge of my nose) goes completely numb. I start shaking like a maniac. This lasts for a good 2-3 hours. Could barely walk upon getting out of the car.
Slamming into doorways when trying to walk through them.
Slamming into desks, tables, etc... when trying to walk by them.
Horrible depth perception with my ears (i.e. hearing things behind me when they're in front of me).
Tired all the time.
Random anxiety attacks all day, everyday.
Loss of bladder/bowel control or the urge to go, frequently, for no good reason.
Random "sunburn" pain and/or itchiness on areas on my body.
Whole left side of body was numb, fatigued and/or feeling pins and needles, at some point.
The worst pain I've ever felt in both my legs for about 2 days. NOTHING helped.
Black or white "swarms" of glowing spots.
Loss of taste in my mouth or poison taste in my mouth.
Shaking...my whole body...or tremors in my limbs.
Loss of balance.
Forgetting things (how to spell, that I'm carrying things, how to get back to my house, etc...).
Headaches/migraines I've had for years.
Partial/total loss of vision on several occasions.
"Lightning bolt" pains up and down my spine.
Well....the list goes on and on. I suppose I'll list my tests and results and get on with the posting.
MRI - positive with white matter. EEG - abnormal. EKG - normal. Optic Neuritis Test - normal. Sleep Study - said to have Idiocratic Hypersomnia. Blood work - negative for Lyme, diabetes or anything else they may have been looking for. My doctor said I was healthier than a lot of people.
My primary physician points out that MS can't be ruled out, just yet. My neurologist says she can't think of any more tests she can give me and shoved me off to get a second opinion.
I'm now waiting to get an appointment with a new doctor.
I'm angry, I want a diagnosis and I want to be fixed.
Help!
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
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bettyg
Unregistered
posted
mama, what a detailed health history ... so sorry you've been going thru what the majority of us do.
WHICH LYME TEST was done for you ... elisa? or
western blot igm and igg and WHICH LAB DID TESTING?? very critical there ..
i can't remember, did you post for a LLMD in the SEEKING DR. FORUM? if not, please do.
copy your outstanding health history and post it in a NEW POST THERE ...
subject: CONN. LLMD NEEDED
go to lower left hand corner and mark box to receive all replies ok! click send.
hoping you get the right llmd to start you on the road to REMISSION!
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posted
Honestly, I have no idea what kind of test was done. My doctor took a bunch of blood and, later on, I was told "the Lyme test came out negative". :/
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey Mama,
Sorry for all you've gone thru. Unfortunately your story could be all of ours - bizarre, scary symptoms, and not a single doctor that can figure it out.
It definately sounds like Lyme to me, not to mention the fact that you live in the hottest state for the disease.
Betty gave you the best advice for now - the first thing you need to do is go to the "Seeking a Doctor" section and find a LLMD (Lyme Literate Medical Doctor).
Do NOT waste your time with other doctors right now - they will fill your head with garbage and you will only get sicker.
You need aggressive therapy and you're not going to get that from your primary, nuerologist or an infectious disease doc.
Good luck and keep us posted.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Let me tell you something about Lyme tests - they are junk. Up to a 70 percent inaccuracy rate, especially if you've had Lyme for an extended period of time.
The test doesn't test for the actual bacteria itself, but for the antibodies your body produces against it.
When you've been infected with Lyme for a while, it hammers your immune system and your body quits producing antibodies against Lyme.
Sadly because of this the sickest Lyme patients often test negative.
This is why Lyme is supposed to be a clinical diagnosis...
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Hi - sorry you're going through all this. IGeneX lab does very good Lyme testing (www.IGeneX.com). They can send you a test kit. The tests are for IgM and IgG.
However, about 70% of those with Lyme test positive who actually have it, so this is a disease that's treated clinically.
And by what you've described, I think it's best to get to an Lyme-literate doctor (LLMD), who really understands the disease, and start treatment.
A huge list of Lyme symptoms to peruse can be found at www.anapsid.org. Scroll down and click on the Lyme Disease box, then click on Diagnosis, then Master Symptoms.
(insert motivational quote here: out, out, darn Lyme)
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Like Betty and Lauren - don't worry about what you're doctor is telling you right now. Lyme disease is over his head, he doesn't know any better.
Go to the Seek a LLMD forum and find an expert near you. Sounds like you may very well have Lyme so you need to check it out thoroughly. Be well soon -p
Posts: 641 | From So. CA | Registered: May 2008
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bettyg
Unregistered
posted
also, ask for copies of all your tests.
in face, i've signed a RELEASE OF INFORMATION form and have asked for copies of all medical reports, xrays, labs, etc....EVERYTHING.
then i know what has gone on and it was needed for my ssdi, disability insurance claims for ss's 5 yrs. of hell program.
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Hi there, ShakespeareMama--I love your name. i was an English major in college and had dreams of getting a Masters in Shakespeare or British Lit.
Anyway, sorry you're going through all the garbage.
Have you been told yet that your "obsessive description" of your many symptoms is proof that your illness is all in your head?
I try to describe in detail what I'm feeling to my PCP and just get looks like they want to scoot out and get me a straightjacket.
But I agree with Bettyg, post your message on Seeking a Doctor and get yourself to a LLMD.
Forget any more regular doctors. They just don't get it.
Like someone else said, it's over their heads, not in your head!
Good luck, and I hope you get the treatmetn you need!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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adamm
Unregistered
posted
Most Lymies test negative. The simple fact of the matter is that if you have the symptoms, you need to at least try treatment for a few months. You should read up on it here: lyme-info.net lymecryme.com ilads.org
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Dawnee
Unregistered
posted
I have every single symptom you do. When I read that you hear things from the wrong places.. I could not help but smile. *raises hand* We at first thought I had MS also. I have L'hermittes Sign which is supposedly just about exclusive to MS, and VERY hyper reflexes, clonus, sustained clonus, tremor, weakness or perceived weakness, neuropathy in legs, horrible shooting static pains down arms, vibrating sensation, bells palsy episodes, swimming little frenzy of dots in my vision... the list goes on. But my MRI only found one lesion (lots of Lymies have brain lesions) so they dismissed MS and instead told me I must be crazy. ~ Not long after that I came up CDC positive for Lyme disease. Yay me.. I'm not crazy after all.
Don't freak out too much. You're gonna be okay. Do you have an LLMD yet? Getting IgeneX tested soon? You're in the right place.
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I hate to hear the ordeal you are going though. Welcome and you are in the right place. I have found a new home here with all the wonderful information.
Did your neuro do a Spinal Tap?
I was going to get that done but I got very scared about the needle and I had already been through so much already.
We are well here for you Posts: 171 | From the land of oz | Registered: Feb 2009
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~ Not long after that I came up CDC positive for Lyme disease. Yay me.. I'm not crazy after all.
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