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Old 10-28-2011, 08:12 PM   #1
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Wondering if I have Lyme..

I have been searching for answers since last November, when I had a terrible experience. I had eaten some Thanksgiving leftovers and drank some coffee, and had a few bouts of dizziness. When I was 9 years old, I had brain surgery to remove a benign cyst, which went successfully. The main symptoms that had been accompanied by this cyst were dizziness and nausea. Naturally, I started worrying that my brain tumor was back and I basically had a full-blown panic attack. Prior to this, I had never had a panic attack, and besides being a bit of a worrier, I didn't have health-related anxiety.

Since then, I have had a slight feeling of dizziness which is pretty much constant. It's not a spinning-type dizziness, but rather a swaying, unsteady feeling. I have gone through numerous doctors who performed many tests. Here's a summary of that:

PCP: thought it was sinuses, gave me sinus meds
ENT: didn't think it was my ears, no tests
PCP: blood work; normal
Neurologist: Ordered MRI of brain, came back normal
ENT: VRT test, normal
Neurologist: CTAT of head and neck to check for blocked arteries; normal

and now my neurologist and my PCP have tried to put me on SSRI's because they think it's anxiety. My symptoms are dizziness, and I also have neck pain on the left side of my neck. They subsided for awhile, and now are starting to become more prominent and bothersome. I also have an enlarged lymph node behind my left ear. My PCP looked at it and said not to worry about it, but that was in the summer and I have not had it looked at since (it has neither increased or decreased in size).

Now, I want to mention that I am an AVID outdoorsman, and have picked numerous ticks off of my body throughout the seasons. I have hiked parts of the Appalachian Trail, went camping at a friend's lake for days at a time both previous summer, etc. Also, I have a 2 year old black lab which sleeps in the bed with me (I mention this because of the possibility of ticks coming from her to me).

I want to make an appointment with my PCP and order a Lyme test (not ready to jump on the LLMD bandwagon just yet) and see what happens. I am baffled, as my blood work, MRI, VNG, etc have all been normal and I'm searching for an answer!!

Reading through these posts, I notice that the symptoms do not seem as subtle as mine. It seems debilitating, painful, and life-changing. I have been able to do well in school, keep my job, etc throughout all of this, even though it is constantly reminding me that I could feel better and lingers in the background. I guess I'm asking if there are varying levels of Lyme, and if I could have a "mild" form of it.

Or, on the contrary, does this not sound like Lyme at all? Any input will be greatly appreciated, and it will not sway my decision to get a Lyme test either way. I don't know how soon I can schedule this test because I am in the process of getting a new job.. so it might be a couple of weeks before I can actually get in to see a doctor.

One final question: will I need to do any special preparation the day of the Lyme test? How long will the results take to come in? And will my PCP be reluctant to issue one, considering that it is a "less likely" cause of my ailments?

*EDIT: I also have created previous threads which detail the progression in greater detail:

http://www.healthboards.com/boards/showthread.php?p=4730436#post4730436

http://www.healthboards.com/boards/showthread.php?p=4831617#post4831617

http://www.healthboards.com/boards/showthread.php?p=4730439#post4730439

Last edited by Ryan484; 10-28-2011 at 08:13 PM.

 
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Old 10-29-2011, 02:33 AM   #2
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jenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB User
Re: Wondering if I have Lyme..

The only thing I would strongly recommend is that you have your blood sent to Igenex Lab in Palo Alto California, the only lab to date that knows how to properly test for lyme. Otherwise, you will be wasting your time to go through a non Lyme lab and a non lyme specialist (an LLMD). If you haven't already, you might read the post at the top titled "Lyme Newbies".

Best,

Jen

 
Old 11-28-2011, 12:09 PM   #3
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Re: Wondering if I have Lyme..

As of late, stats show that Lyme tests are only 65% accurate. This means you very well may show up negative for Lyme when you get results back but actually be positive- "seronegative". If you've exhausted and been cleared of all other possible disorders or issues, you should consider seeking out a LLMD. Lyme is truly meant to be treated clinically and is farmore complex than a simple blood test. Just something to keep in mind. Best of luck.

Last edited by lyubova; 11-28-2011 at 12:10 PM. Reason: spelling-oops

 
Old 11-30-2011, 08:10 AM   #4
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Re: Wondering if I have Lyme..

Hi Ryan, it would be very wise to be tested thru Igenex Lab. you can find their info from where you are sitting. You can call them and tell them the area you live and areas you have visited. They can help you decide what strains to be tested for. You would want to be tested for co-infections such as babesia, bartonella, and other things.
Just to let you know, I had been tested numerous times and testing is just not accurate.
One must see a Lyme specialist (Lyme Literate Medical Doctor) to get a accurate diagnoises.
The people at Igenex will be able to answer your questions about testing.
Everyone is different on how they are affected by Lyme and co-infections. And all depends on how long we have had it. Some people may just walk around chronically fatigued and that would be their only symptom. Some can be diagnoised with ADD or alshimers ect ect. Some of us wind up with every symtpom there is...And if you go to just a regular g.p. You will not get a proper diagnosis.
I have had MRI's, ekg's and tested with everything under the sun pre diagnosis and after...My test still come out normal. So moral of the story, you can have the symptoms and nothing will show.
Lyme is in the syphilis family, it imbeds in bone, muscle, and every inch of our bodies. It would be very wise to check your pup before she shares your bed. And many times the ticks are so small you can't even see them. Also fleas, knats, lice, mosquitos ect can carry the bacteria. It is suspected that we can pass it on thru sex and of course blood transfusions. It is estimated that over half the population have lyme.
Hope you find your answers soon. "If" you have lyme, and are only displaying small symptoms right now. It doesn't mean it can't get worse.
It might be good to have your pup looked at too. The vet I was taking my dog too 20 years ago. He suspected I had lyme way before I got a diagnoises from human docs. Wish I had listened to him...
Wishing you luck in finding your answers.
Jodie

 
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Old 11-30-2011, 04:06 PM   #5
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Re: Wondering if I have Lyme..

Hello Ryan:

Lyme symptoms are different for each person. It all depends where the tick bit. Do you remember a bulls eye bite on your person? I don't but Lyme was just getting public attention about the time I was bit in 1974. My symptoms all seemed to settle in my head at first. Now I have many debilitating symptoms. It may not be too late for you to get some antibiotics. I took them for six months in 1999 and a few of my 114 symptoms went away - thank God! After the antibiotics, he tested my urine and that is where he found the Lyme diagnosis (probably from the death of the bacteria).

If you can find a doctor that treats for Lyme, you should ask him for a PCR blood test by IGeneX. (LYME IgG/IgM ANTIBODY SEROLOGY).

I hope you can get a diagnosis soon. I know how miserable it is not to know what is wrong with you.

Ellie Jeanette

 
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