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It's me again....getting very depressed...

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Old 07-18-2006, 08:48 AM   #1
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Join Date: Jan 2005
Location: Phoenix, AZ
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schao HB User
It's me again....getting very depressed...

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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Old 07-18-2006, 10:07 AM   #2
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Location: NJ
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6Blues HB User6Blues HB User6Blues HB User
Re: It's me again....getting very depressed...

Hi schao.

I know EXACTLY how you feel. I had the exact same symptoms and no one knew what was wrong with me.

Not knowing was the worst part. I remember how angry and depressed I was.

I would go see a new doctor, have to explain everything to them all over again and hope I didn't leave anything out.

They would order a bunch of tests. I would go for the tests only find out there's nothing wrong with me except I had been exposed to Mono at one time (I also had positive EBV - I think 90% of adults are positive).

Back then I still had friends and family calling and asking how my tests and appointments were and if the doctors found anything. I hated to tell them I had no answers - I felt like a broken record.

Every time I saw a new doc or had a new test - I thought I had some different ailment.

ie: When I went for the MRI, I told folks they were ruling out brain tumors and Multiple Sclerosis. Then, the next doctor thought I had X, then Y, then Z. It was exhausting and expensive. Its also a full time job managing all that crap.

Hang in there!

Someday you will have a diagnosis (although in my non-medical opinion what you describe is Lyme).

Apologies if I can't remember, but have you been tested for co-infections?

Peace and health to you,

Old 07-18-2006, 07:15 PM   #3
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Join Date: Aug 2005
Location: North Carolina
Posts: 1,247
Pearlscale HB User
Re: It's me again....getting very depressed...

I also understand. I had the run around for so many years. I question whether you will find the answer - to is it lyme?-at the Mayo. Theyre good but I'm not sure lyme literate. I agree with Mickie, what about co-infections. I also tested ind at Igenex on all bands. But I also tested positive for several of the co-s. I hope you get to the bottom of this soon, and get started on treatment.

I think all of us get depressed over this at one time or another. Hang in and know you will be in my prayers....Marsha

Old 07-18-2006, 11:54 PM   #4
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Join Date: Jul 2006
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KCLyme HB User
Re: It's me again....getting very depressed...

Hi schao,

It sounds like your doctors need to be reminded that even the CDC says that Lyme is supposed to be a clinical diagnosis. I don't know where you live, but at least one LLMD recognizes that even one positive indicator on the Western Blot should be treated as Lyme. Here's the link that explains his logic:

[url][ REMOVED ][/url]

I got my Lyme in Kansas decades ago and my Western blot results and symptoms were very similar to yours. Thankfully for me, my doctor follows Dr. Crist's protocol. I did subsequently test positive on the Bowen QRiBb test which I highly recommend because it is the ONLY test that looks for the bacteria themselves.

My herx symptoms when I started on antibiotics would have confirmed my diagnosis if nothing else had. I've been on them for about 14 weeks now and am clearly experiencing improvement.

Below is a URL that will take you to the U.S. patent site. If you search on the patent number (6,838,247) it will pull up the QRiBb patent info. It explains the logic as well as the process better than I can.


Many Lyme people are skeptical of it which amazes me when I know they, like me, have gone undiagnosed for years and suffered tremendously because of it. Dr. Whitaker, who invented the test process reportedly is a Lyme sufferer herself, and Dr. Mattman who independently validated the test results was nominated for a Nobel Prize for her work on stealth pathogens in 1997.

Please let us know how things progress for you. Best of luck. I can truly empathize.

Last edited by moderator2; 07-19-2006 at 06:38 AM. Reason: do not post a doctor's website for any reason

Old 07-19-2006, 07:56 AM   #5
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Join Date: Feb 2005
Location: Delmarva area
Posts: 728
Re: It's me again....getting very depressed...

Hi schao,

I too had more than one negative test. The first test I had come back positive was the Lyme Dot Assay, which identifies the pathogen rather than the antibody. After I'd been on abx for a few weeks, my antibody test came back positive. The reasoning behind this is that there were not enough free-floating antibodies in the blood at the time the negative test sample was taken - due to their all being "tied up" with pathogens (called a complexed antibody). The testing was designed for tracking purposes, not diagnostics. The diagnosis is supposed to be clinical with the testing used to confirm. Sorry for the short post, Im in a bit of a rush this morning. But do look into the Lyme Dot Assay (urine test).

Old 07-19-2006, 03:50 PM   #6
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Location: Phoenix, AZ
Posts: 674
schao HB User
Re: It's me again....getting very depressed...

Thank you all for your responses and encouraging words. If my blood test comes back negative again, I am definitely going to do the urine test. My doctor already signed for it so I'm good to go on that. We'll see what happens, I'll let ya'll know.
Have a great day!


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