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Well, I sent in another Igenex blood test. If this one comes back negative, I am going to do the urine test. I just want a diagnosis more than anything. I am now being seen at the Mayo Clinic and having all kinds of tests run. Just to recap you all on my symptoms, here they are:

Disconnected/spacey/drunk feeling 24/7
Extreme fatigue
Overall weakness
Extreme lower back pain with leg pain bilaterally all the way down to my feet
Leg weakness
Extreme brain fog!!!
Hair loss
Very loud ringing in both of my ears
Pelvic pain and breast pain--feels like I should be on my period all month long
Muscle twitches
Eye floaters
Heart palpitations
Shortness of breath
In the morning I ache all over like I have arthritis all over, once I get going it lessens a little bit--but I hurt all over all day long. It is mainly in my low back, butt and legs though.

Tests I have had done:
MRI--low back, brain, c-spine
CT scan-abdomen, pelvis, chest
Xray-chest, abdomen, pelvis, low back, hips
PET/CT scan-entire back, down to mid thigh
Spinal tap
EMG on my legs and low back
Pulmonary tests
EKG's--many of them
I'm getting a heart monitor this tomorrow to wear for 24 hours
I'm getting an EEG next Monday
I also have chronic sinus infections
Tons of blood tests: CBC, metabolic panel, ANA, sed rate, RA factor, antiphospholipid antibodies, EBV, Lyme (with igenex once), full thyroid panel, pth, hormone tests, im sure much more, but thats all I can think of right now.

The only thing that has come up is I had EBV at one time (dont remember that one), a couple of my hormone tests were off--DHEA-S was very low, and my free testosterone was a bit low. I also just had my serum serotonin checked and it showed I don't have any in my blood (not sure what that means) My igenex test came back as negative, I thing the IGG (may have been IGM) was indeterminate for igenex standards. The only positive band I had was 41--it had 2 plus signs, and bands 23-25 were ind, and I think one more was indeterminate as well. Is it possible to have positive and indeterminate bands and not have lyme?

Thank you for reading my long post. I am getting very depressed b/c I am in so much pain everyday and so weak. I'm convinced I have some deadly disease that the doctors have missed :(
I'll let you all know what this igenex test comes back with. My husband reassures me that we are not going to stop until we find out what is going on-no matter what the cost--he is definitely a blessing and I dont know what I would do without him. I may not even have lyme, and I could be going totally down the wrong road--I just dont know what to do anymore except keep getting tests hoping something fixable will come up.
Prayers to all of you.


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