seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
What kind of doc made this diagnosis? First and second types?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Okay please steere him away from the Mayo clinic - they are so anti-lyme it's not even funny and they are very expensive. He'll walk away broke from God knows how many useless tests and some blanket diagnosis that's absolutely worthless.
Go to the "Seeking a Doctor" section here and post for an LLMD nearest you. A Lyme doctor is the only one that can definatively diagnose him with Lyme - IF that's not his problem then they can rule it out and point him in the right direction. Good luck!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
If you read more on this site, you will see that most doctors are completely ignorant about lyme.
Our Yale-eduacted family doctor told my husband to get an MRI to check for a brain tumor when his headaches came back a year after treating for lyme (after a positive test). She refused to believe it was the lyme coming back since he had been treated for 3 weeks the year before and this time his lyme test was negative.
Eye issues are very common lyme symptoms. My entire family is infected with lyme, including my 3 young children. My 5 year old saw colored spots during the first year of his lyme treatment. His twin brother had eye pain. Fortunately that has gone away for each.
Other people complain of blurry vision or floaters or eye pain.
I would definitely stay away from the mayo clinic or infectious disease docs, as you will discover that they are on the wrong side of the current lyme controversy.
You might also look at symptoms lists to see if your brother has other symptoms that he doesn't realize are lyme.
Best of luck,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
A bone marrow biopsy? What does his WB see?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I wouldn't be sure the second doc is an LLMD ..... there is no way to be certain a person does not have Lyme. There is no test that shows 100% that someone is not infected.
Can you post his IGeneX results here?
Mayo Clinic will tell him it's not Lyme. If it is Lyme, they will be no help whatsoever.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Has he had a Western Blot lyme test done through Igenex?
Also - has he reviewed the list of about 75 or 100 symptoms that could be lyme? It would be odd if ONLY his eyes were involved and nothing else, but it is possible to have only a few symptoms at a time.
Just b/c it's a lyme center does not mean that the doc is completely lyme literate. One LLMD doc in NJ my husband went to for a short time completely misdiagnosed our neighbor who CLEARLY had lyme, and this doc was formerly the president of ILADS!
The best answer is to do your own research to educate yourself and ask a lot of questions on this site.
Also, I would get another opinion from an LLMD.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
One very good doc told hubby a long time ago that he didn't like the words always and never. If someone told me they were 100% sure of my diagnosis then I would probably be looking for another doc.
Lyme is a clinical diagnosis with supporting tests (if you are lucky).
The real test is how a person responds to treatment.
And if the Lyme Treatment Center in New Jersey is the one who recently published the article saying that there was no such thing as chronic Lyme -- it was all in the person's head (psychiatric or somatization disorder etc) -- well then run the other way and don't believe anything they say.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
mayo is as bad or worse than the 2nd opinion doc
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
If a doctor says "you don't have Lyme" by looking at test results, they are *not* a LLMD.
The sensitivity for the two-tier Lyme testing is at 46%. In order to be considered an *accurate* test it has to be at 95% or higher. Enough said, right?
The tests aren't accurate. It's a clinical diagnosis.
Posts: 366 | From MA | Registered: Apr 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme is a clinical diagnosis! Any doc that says otherwise is not Lyme literate.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Just because they say it's a "lyme disease center" doesn't mean it's Lyme Literate nor affiliated with ILADS.
It could be a IDSA guideline center.
Where is this place? What is the website? Post it and see if we have info on it.
I agree with lymielauren, go to seeking a doctor and find one that is a member of ILADS.
Also, I agree with the others, please post the WB results and tell us the lab that did the test.
James
Posts: 872 | From New York City | Registered: Jun 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
yes, james that is very true.
i went to a proclaimed lyme center near me and even though there were many folks in the office with lyme, he didnt believe i had it after complaining of dozens of symptoms, my regular MD said I had it, and a CDC positive test!
thank goodness i went to another doctor ASAP.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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