how were you diagnosed?

How were you diagnosed?
clinically dx only- (labs were all negative) ? - 12.0%
Labs positive w/clinical dx ? - 56.0%
clinical dx w/labs unequivocal ? - 12.0%
clinical dx with neg lab(s) but later labs resulted +? - 8.0%
not yet diagnosed, and neg labs ? - 8.0%
other positive testing? (spinal tap or mri for example? - 4.0%

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New Member

Date Joined Apr 2010
Total Posts : 19
   Posted 4/19/2010 7:37 AM (GMT -7)   
I am curious how everyone was diagnosed?

Veteran Member

Date Joined Aug 2007
Total Posts : 4399
   Posted 4/19/2010 7:53 AM (GMT -7)   
Three Lyme tests were done, and 2 coinfection tests were done.

Fall 2007 - IGeneX positive/CDC negative, but the doctor who ordered the test agreed that my clinical picture fit with Lyme and thus he diagnosed me with Lyme.
Winter 2008 - Quest labs negative (but a few bands were positive).
Summer 2008 - CDC positive (Mayo Clinic labs did the tests, though I was not a patient there at the time)...and the ID doctor who ordered the test blew it off as impossible to be Lyme/must be cross-reacting with something else (with what? he couldn't come up with an answer when I asked)...

All coinfection tests, first from Fry Labs ('08 or '09, I can't remember) & later from IGeneX (2010), were all negative, though I do have clinical diagnosis of Bartonella, and I personally suspect I've had an Anaplasma infection for a long, long time (based on unexplained blood test anomalies, mostly)...
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.

Regular Member

Date Joined Mar 2010
Total Posts : 230
   Posted 4/19/2010 11:55 AM (GMT -7)   
The initial test was negative and six weeks later I tested strong positive on the Western Blot. I believe the six week delay in diagnosis and treatment has resulted in chronic neuroligical lyme for me. Still trying to get better ten months later.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.

Veteran Member

Date Joined Dec 2006
Total Posts : 3533
   Posted 4/19/2010 1:10 PM (GMT -7)   
Igenix testing 5 bands on one 6 on the other. CP infection as well as babesia
Very mild left sided (could have fooled me with the "mild")  UC.Just found out 4 years into it I might have Lyme's Disease, going to a LLMD in December. Confirmed Lymes on 12/8/09 before my new antibiotic protocal from my LLMD, I  Started and stopped LDN ON 1/25/09 to mid May no improvements. Tried Asacol, Pentesa, Colozol, Sulfasulsadine and Lialda, they made me worse. A range of antibiotics (for 10 days here and there), not much better. Supplements: No UC meds at this time. Started Doxy and Cedfinir too rough on stomach, stopped those.Started Bicillin injection 1/12/10, once a week of injections.On Zithromax and Flagyl as well, about 2 year protocol to rid myself of bacteria Babesia, Chylmadia Phenomia and Borresliosis. Taking Oxy Aloe Flush and liquid vitamins, curcumin and CO Q10

Veteran Member

Date Joined Sep 2007
Total Posts : 2017
   Posted 4/19/2010 1:55 PM (GMT -7)   
Went to an orthopedic doctor because my knee was swollen and asked him to test me for LD. The EIA was positive but the WB was completely negative. Then, one of the first Infectious Disease doctors ordered all of the necessary and corrrect tests... I was overly positive for LD. I was IGM+ and I had 6 IGG+ bands.

I have since been re-tested (by a different lab) for everything under the sun and came up positive for almost everything "tick" related.
A small group of committed citizens can change the world-it's the only thing that ever has.-M. Meade

Forum Moderator

Date Joined Mar 2009
Total Posts : 2154
   Posted 4/19/2010 7:00 PM (GMT -7)   
I ended up in ER with numerous symptoms including stabbing pains in heart area in June 2006.  This following extremely stiff neck in June 2005 and then difficulty using stairs with legs that fall.  Followed up with primary care dr. in June 2006 who ran lyme test and told me everything was negative.  Stupid me never asked for copies of labs.  I tested positive on three bands including band 39.  Went four more years undiagnosed from dr to dr until a woman endocrinologist kept going back to lyme.  I then called original dr.'s office and got original labs which showed the 3 significant bands.  Have never tested positive other than for erlicholisis high titer of 1:320.  Am now awaiting Igenex tests to try and get positive as insurance company is refusing me IV for neuro lyme.  Have MRI with white matter/lesions and neuro symptoms.  Keep your fingers crossed Igenex comes back positive. 

Regular Member

Date Joined Jul 2007
Total Posts : 478
   Posted 4/19/2010 9:28 PM (GMT -7)   
Bit by a tick in 1986, diagnosed with JRA, and clinically diagnosed with Chronic Lyme in 2007. Only tests I have that show anything is my CD57 in which I scored a 28.

Forum Moderator

Date Joined Mar 2009
Total Posts : 2154
   Posted 4/20/2010 5:12 AM (GMT -7)   
Patti B, mind if I ask what band you test positive on?

Forum Moderator

Date Joined Nov 2009
Total Posts : 3266
   Posted 4/20/2010 6:18 AM (GMT -7)   
First infected 1984. Tests negative in 1990 and 91 when symptoms were getting unmanageable. Doc didn't believe it was Lyme but gave 2 week course of abx each year.
Bitten again 2007. Not tested until 2008 when went to the doctor for insomnia and mental disturbance. Positive labs. However, only Igenex able to identify Ehrlichia co-infection.

Nicky D
Regular Member

Date Joined Jun 2009
Total Posts : 361
   Posted 4/20/2010 5:20 PM (GMT -7)   
I got a clinical diagnosis from a Naturopathic doctor, and then confirmed with with an LLMD. The naturopath ordered tests from Igenix. The test was a while ago, but I remember I had IgM band 41 ++ and Band 39 IND and IgG Band 41 +. Not anywhere near to CDC positive, but my LLMD said if the band 39 had been positive he would have considered it a positive test (because it was a starred band)...or maybe if I'd had another band positive. I can't remember exactly. He had me do a month of antibiotics and re-test, and, of course, it came back even more negative.

Although my test was not positive, I had a really, really strong reaction to treatment. I felt like crap for close to six months after starting antibiotics, but after that a felt a lot of improvement. So I feel comfortable with the clinical diagnosis even though the tests don't confirm it.

Veteran Member

Date Joined Aug 2005
Total Posts : 4304
   Posted 4/20/2010 5:34 PM (GMT -7)   
I clinically diagnosed myself and later on found a doctor who sent my blood to IgeneX which confirmed my clinical diagnosis from researching.
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:

New Member

Date Joined Apr 2010
Total Posts : 2
   Posted 4/24/2010 12:56 PM (GMT -7)   
I have been sick for five or six years. I don't recall being bitten, but I think it must have been in 2000-2001. I have been very sick since mid 2004. I have had what seems like every test my MD could order, with no luck. My naturopathic physician sent my blood to Igenex late December for the Western Blot, which came back IND for band 39, + for band 41 and IND for band 83-93. She then consulted with a LLMD? (could have been a naturopathic doctor) who gave me a very positive clinical diagnosis of Lyme and Babesia.

Regular Member

Date Joined May 2010
Total Posts : 74
   Posted 5/16/2010 9:08 AM (GMT -7)   
My August 2009 Igenix IGM Western Blot test showed a weak positive for band 34.
Had double positive for band 41.
CDC was negative
Igenix was just positive.

My August 2009 Igenix IGG Western Blot test showed IND for band 31 and IND for band 34, positive for band 41 only. Results - negative.
Local lab showed Western Blot (IGG) positive for band 41 as well.

Back in 1/19/09 - Igenix IGM showed IND for band 39 and positive for band 41 only. Doctor said Lyme was negative. But very high EBV.

8/08 per local lab, tested negative for everything. But this is when my symptoms began.

Does anyone actually know what these bands mean. For instance what is band 31 , 34 & 41?? Anyone??

Forum Moderator

Date Joined May 2007
Total Posts : 35859
   Posted 5/16/2010 10:00 AM (GMT -7)   
I was clinically dxed a several years ago. I didn't test positive(by W. B.) until I had spent a full year on Minocycline.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

Regular Member

Date Joined Jun 2009
Total Posts : 367
   Posted 5/16/2010 2:59 PM (GMT -7)   
Clinically diagnosed by my Lyme doc. I tested CDC negative and igenex negative. First quest test by my incompetant former PCP I tested pos on bands 66 & 41, and pos 41 on the other one.
Then my Lyme doc tested me through igenex (my request he already diagnosed me clinically).I was pos for band 66,58,41 and IND on 2 others(can't remember) and pos 41 on the other.

A year and a half until proper treatment. 1 year and a half of treatment and still not better. (had some bumps along the way) still hopeful, thankful for my wonderful doctor.
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