posted
So I have felt REALLY bad for YEARS and years now. I am 31, have 2 kids. I feel like I have chronic fatigue, there is ALWAYS "something wrong" with me.
I have had 3 back surgeries in 10 years and my most recent one was last September. After that I got really sick (I had been on steroids over and over). My dr diagnosed me with Mono (I had it when I was a kid too) but they said it reactivated.
I have been to dr after dr and then just finally gave up and deal with feeling bad all the time.
almost 4 years ago I was diagnosed with Meniere's disease because I suffer from vertigo spells, dizzyness, total spatial disorientation..etc..
About 3 months ago I started "talkingn funny" forgetting words, forgetting a lot of things, reversing words..etc... So I was referred to Neuro. Did some tests, now finding out I am having seizures and had a SPECT scan done that shows I have significant frontal lobe degeneration among some other things.
So after a friend of mine suggested I look into Lymes I have been researching and am just stunned. I have SOOOO many of the "symptoms" of advanced Lyme's.
So oredered the test kits from Igenex and my primary agrees to test me.
Any specific tests I should get. I want to do the co-infections because I remember so many times having big fat ticks on me, I had cat scratch fever when I was a kid as well and I was hospitalized once for 10 days with "unkown" infection that they dubbed cellulitis, but looking back it looked exactly like the EM bullseyue rash.
so much to take in and digest here.
Posts: 13 | From AR | Registered: Feb 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
You should find a LLMD. Lyme Literate Medical Doctor. You can try posting in the seeking doctor page.
posted
Yes, do the IgeneX test, at the very least the basic panel which costs under 300.
I went there in person a couple of months ago, in Los Altos. The place is legit. My girlfriend and I tested positive after two false negatives with Quest Diagnostics.
Posts: 19 | From Oakland, CA | Registered: Feb 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would find a LLMD close to you. If you do get tested by Igenex first always get copies of tests.
If you get your old records you may even find they did a test that was deemed neg. because you did not
have enough bands to say positive. Now we know many do not produce enough antibodies to react to
the antigen tests without a challenge of a trial of doxycycline. So with that in mind if you are
not comfortable enough to go that route, I would find a LLMD to help you get well.
-------------------- 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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Where are you in Arkansas? My ticks were there, and I got Lyme and Rocky Mountain Spotted Fever. Warning-an infectious disease MD at the University of Arkansas told me that I could not possibly have Lyme disease, as Arkansas does not have ticks that carry it....funny, I tested positive per CDC guidelines! Don't believe it.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
I am in central Arkansas, but just recently moved here although I vacationed here as a child alot. I have been ALL over the US and the world. I have traveled alot and lived in other countries.
I have never been tested for Lyme's that I know of at all. I never made any connection to the disease until a friend of mine was found positive and pointed out stuff to me.
I was injured 10 years ago in the military and have subsequent nerve damage from surgeries..etc.. so I attributed a lot of my symptoms to that.
Just waiting for the Igenex test to get here so I can have my blood drawn.
Posts: 13 | From AR | Registered: Feb 2010
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posted
Will your local dr do the test for you? Be sure to post your results in Medical Questions when you get them. We'll help you.
PS... It's LYME, not with an "S".
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
OY- Steroids are really bad to use when you have Lyme..it can make things worse.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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