Ok, I want to post some of my symptoms (although I already believe that I have Lyme) and what I believe I should do, just to get some opinions/comments from those that've "been there". I want to see if I'm on the right track.
SYMPTOMS about 3 months after hiking in PA, I had: extreme arthralgia swelling of ankles (right one especially) pain in large joints worse than rest headache blurry vision neck pain mid-back pain low-back pain (all unrealted to injury) trouble sleeping short term memory problems itching skin in absense of marks trouble gripping with hands gait problems swallowing problems urinary urgency transposing numbers/letters can't concentrate to read (not every day) pens/typing nearly impossible
This is not an all inclusive list, but gives you the cliff's notes version.
Anyhow, family doc thought (as did I) of MS first. Had many normal blood tests, MRI (head/spine) showed some problems, but they say that it's not related to this illness (hmmmm), all the X-rays, scans, EMG, EEG, etc. all normal. My Lyme titer was negative according to doctor (I think it was ELISA only, though). Now, the family doc, internal med doc, and neurologist want me to just take a mood elevator and forget it.
I refuse to take ANYTHING until I get diagnosed. I don't want any symptoms masked. Haven't been able to work since mid-September. I'm filing for disability so I can get public assistance of some type or other. (They're making me, but I guess it's a good idea).
Now, I'm pretty sure I've got Lyme. I had a rash on my leg and remember calling off with 'flu in maybe July????? I didn't remember this at all, though, till my teenagers reminded me of it all. I slowly remember stuff after being reminded. Still, docs won't diagnose Lyme.
I need opinions on waht to do next. I live in an area with NO LLMD, and the nearest one is apparently 6-8 hours away which I can't get around that well right now.
What should I do next????
Thoughts????
Thanks mylyme2006
Posted by David95928 (Member # 3521) on :
What you describe is very similar my symptoms and to what many here report. Is there a local support group? Sometimes they have the lowdown on local docs who will make a clinical diagnosis and treat. That's what I did and it has worked out well.
Posted by cantgiveupyet (Member # 8165) on :
Sounds like some of my symptoms early on.
I was out of work since Sept and they forced me back, now i am struggling to get by...plus my manager is not supportive and i am stressed to the max. I prob will file for disability so i can get better.
I was also bit in PA. I also went thru the gamut of tests 14 dr in all including about 8 ER doctors....
I would suggest finding an LLMD and starting treatment. Trust your gut with this one.
Posted by bsanders (Member # 8337) on :
Hi. New here, myself. From PA. If I were you, I would order a test kit from the Igenex Lab; you'll be paying out of pocket,(they do not submit insurance claims, but you can do that.) Local lab can draw the blood and send it away for Western Blot. Once you have those results, it should help you determine a course of action. If I had gone by the "traditional" treatment w/my doc I would not have been tested beyond an ELISA. Fortunately, my chiro is very LL.
Posted by Jillybean (Member # 8071) on :
Also, and correct me old timers if I'm wrong, have your blood drawn the earliest part of the week as possible, especially since it's being sent so far away. My lyme brain doesn't remember the reason why? Help someone! Good Luck, Jill
Posted by hatsnscarfs (Member # 6562) on :
Sure sounds like Lyme! I had many of the same symptoms and a positive lyme test. hats
Posted by Boomerang (Member # 7979) on :
My goodness! Sounds like you went through the Lyme checklist, cause you've apparently got ALL of the symptoms.
Sure hope you feel better soon! God Bless.
Posted by mylyme2006 (Member # 8459) on :
Thanks for all the advice.
Ironically, I work (when I did work, that is) in a medical laboratory. I know how flawed the testing can be and it seems like Lyme tests are terribly flawed as far as interpretation goes---maybe not so much in testing. I think the docs need to be educated in how to read these tests.
Anyhow, I think my next step is to go back to the internist to see if he'd be willing to do a phone consult with a LLMD since there isn't anyone near me. If he says no, and he may, I will at least have that in my medical record that I tried.
The more I can read/understand on Lyme, the more I believe I have it. I can't always understand what I read anymore, and I used to be sharp as a tack. Oh well........maybe it'll come back with treatment.
Thanks again for the info. I'm glad I found this site. I'm sorry we're all here and sick, but it's nice to know I'm not alone. I feel so isolated with this.
I plan to file for disability this week. I have a friend in the "welfare" department who says I need to try. It can't hurt.
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