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.
Posted by dmc (Member # 5102) on :
You should find a LLMD. Lyme Literate Medical Doctor. You can try posting in the seeking doctor page.
best wishes.
Posted by bonafidejason (Member # 24472) on :
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.
Posted by Pinelady (Member # 18524) on :
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.
Posted by Sick Tick (Member # 23003) on :
Hello,
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.
Posted by Lymetoo (Member # 743) on :
Wow. Sure sounds like you have it.
Remember... testing may come back negative even though you've got Lyme.... esp since you've been on steroids a lot.
They will suppress your immune system, making it harder for your immune system to register with the proper antibodies.
In which part of AR are you located?
There's an awesome LLMD in MO. None in AR.
Posted by arkkid1 (Member # 24465) on :
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.
Posted by Lymetoo (Member # 743) on :
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". Posted by BackinStOlaf (Member # 23725) on :
OY- Steroids are really bad to use when you have Lyme..it can make things worse.
Posted by LightAtTheEnd (Member # 24065) on :
My Lyme doctor who diagnosed me told me never to take any steroids again unless it was the only way to save my life or my eyesight.
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