Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Anyone by chance have a good response by the Clevland Clinic and Lyme??
My brother started having some 'strange' symptoms in Sept 2008. He is a deer hunter, has been biten by ticks much of his life (he is 31 years old) and has enjoyed very good health.
He has the following symptoms: stiff, sore neck, tingling/numbness in the legs and feet, issues with peripheral vision, issues with feeling like his eyes are moving all over and he can't focus, at times a wave of panic sweeps over him, ringing in the ears, bumping into walls, feeling like the floor is moving when he walks, and there are probably more, I'm just tired right now.
He was given an Elisa, which was, of course, negative. He's had an MRI of his head and his spine, a CAT scan, blood work which revealed low K and increased WBC.
After all this, the determination by the Neurologist at the Clevland Clinic is: you must have a virus that is causing these symptoms and it should go away sometime soon.
I'm trying not to see Lyme in everything....but I've had a lot of these same symptoms. I ordered an Igenex test for him, but now I think he believes the Neurologist and will just 'wait to get better' and he won't get it drawn.
Am I just thinking it is Lyme because I have it?? Or does it sound like Lyme to some of you?
I don't want him to be sick for years and years like I was. He and his wife are expecting their first child in June and they need him to be able to work.
posted
Someone from another country sold a house to pay for a trip to the U.S. to get lyme treatment at the Cleveland Clinic. They burned thru his money in no time, gave him no help. He refused to leave until they helped him. They called the police and had this sick foreigner thrown out.
Enough said?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I was treated by a rheumatologist at Clev. Clinic before I finally
sought the help of a LLMD. The first words out of her mouth upon meeting me were "you don't have lyme disease". She
continued testing me for RA, despite testing seronegative and
not responding to the antinflammatories. When she started
talking about methotrexate, I knew it was time to find a LLMD.
I started responding positively once I started treatment for lyme.
There was a good article I read, which I think is archived on
lymenet from the Townsend News. The article discusses why
doctors are reluctant to dx lyme and company-especially new
doctors just out of med school, saddled with huge student loans.
They don't want to risk their jobs and being ostracized. My
family and I have been treated several times at Clev. Clinic, and I
would recommend them on many levels, but certainly not for
lyme disease.
Posts: 25 | From new york | Registered: Dec 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thank you for the testimonys (and BettyG for the LLMD's!)! How sad that this person was thrown out of CC.
Yes, my sister had jaw surgery at the CC and was treated well, everything went great. I just think my brother has Lyme, and while the neurologist DID admit it COULD be Lyme, and gave him a Lyme test (I'm sure it was another stupid Elisa, he'd already had one), I am really shocked at the final diagnoses.
How is that for a crap diagnosis??! I was first told it was just 'mono' and I would be fine in 6 months, despite my high uric acid, extremely high WBC, constant fever, swollen lymphs, panic attacks, spacial issues, wetting the bed, ect.
UGH!! I think he's just going to 'wait it out'. But like someone told me... if it's Lyme, it ain't gonna go away. So we'll see, maybe he'll get the Igenex in a few months when he's very ill like I was 6 months in.
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