posted
I had lyme/coinfection done through Igenex. My IgM was barely positive. Everything else was negative including the IgG.
I've also had coinfection testing done through MDL and Quest. Also negative both times.
Still being treated for lyme, babs, and bart due to symptoms.
As for neuro problems, mine have only gotten worse since starting treatment. Scheduled to start IV Rocephin, probably some time next week.
Had an MRI done about 6 weeks ago. It showed some small lesions, but only 1 was mentioned in the report.
Currently in the process of getting a second opinion on the MRI for several reasons, including the fact that the first report was done by someone who was only NOT a neurologist/neuroradiologist, but specialized in ultrasounds.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
My IgeneX results were negative for Babs and lyme. But I know I have lyme disease and co's (did get a positive for Bart from Fry) because of my symptoms, response to treatment, and I remember the tick attached to me.
You can't use the tests to rule out lyme disease or co-infections!
Also, I have lots of neuro symptoms as well as a lot of head pressure and headaches (and also ice pick headaches) and had an MRI but that came out normal. I've heard SPECTs can be better than MRI.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
My daughter has had 3? WB's from IGENEX and none have been positive. The closest was Equivocal. Don't think they use that term anymore. She had a few bands but not all of those that they require.
She was positive for Bart and Lyme on other tests however.
So if you are wondering if everyone pays for this test gets a +, the answer is no. Many will be +, because they have already been very ill and have ruled out many other possibilities.
Just my 2 cents. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
"negative" tests from Igenex and MDL. Positive bart smear with "many" bacteria from Fry. they were everywhere -- makes you wonder how the other tests missed the buggers.
Posts: 1173 | From USA | Registered: Nov 2007
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Dawnee
Unregistered
posted
I tested negative for co-infections but my LLMD won't rule them out. I had another lab come up positive on a lyme band that Igenex didn't catch. Yes, I have had an MRI when they suspected MS 6 months ago and it showed only one very small area of enhancement. Almost all my symptoms are severe neuro. Dawn
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posted
I tested negative with IGeneX but had bands: 18+ 31/41 IND 66++
18 indicates Lyme (according to Dr J) so I have been treating for Lyme since October. Have neuro stuff like twitching, numbness, tingling, vibrations, etc.
Had an MRI in March - negative. Perhaps a waste of money but it was also good to know there was nothing like a tumor up there.
I continue to treat with orals and do well as far as feeling good on abx. Currently take 2000mg of amoxicillin/day
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
See, a test stamped "negative" even from Igenex MAY not be negative. they have to use the CDC criteria. (At least for my last tests a few years ago they did.)
The CDC criteria are ridiculous. So you can't count on what the test says or on the labs that don't test all the bands possible. If one had the lyme vaccine years ago, just take that into account when the tests are done as certain bands, then, need special interpretation. But having had the lyme vaccine would not rule out lyme, either.
So, the tests still have to be interpreted by the LLMD, along with clinical evaluation and history. While positive labs are a great help, the tests miss a lot. This is a clinical diagnosis and that is something that most doctors are not able to do.
Igenex, though while using the CDC criteria, will test for more bands than most other labs.
And, remember, there are over 300 strains of lyme. Only ONE is tested for - Babesia, too, has several strains. Ehrlichia: HGE, HME, maybe more.
Also, when testing, there are certain ways to help get the most accurate tests. Windows of time after tick bite, or . . . a certain time either on or off certain antibiotics. That all matters.
And, even if a test is positive, you gotta know that most doctors will still just say, "well take this abx for a few days and all will be fine." If a new case, of course, early treatment is great but it still needs to be complete to minimize later risks.
==============
Unless the radiologist who interprets the MRI is LL, an MRI is not of much use in obtaining a picture of lyme's effect.
they may see white matter but, often, it is dismissed. Again, a LLMD needs to interpret.
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A SPECT is quieter - a big plus - and perhaps gives more information about blood flow to the brain.
A CT scan is best if looking at inner ear structure.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i tested positive for lyme with igenex but no co-infections AT ALL....
i think there was a mistake about the coinfections.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Lyme is a clinical diagnosis. Not all who get tested at Igenex will be positive.
I tested neg for Lyme at Igenex. Like Lymetoo, some bands were pos and after treating for a while and re-testing, more bands were pos. But I was not positive by the standards set by the CDC (which were not meant for diagnosis but for surveillance, anyway).
However, I did test pos for babs, erlichiosis, WA-1, bartonella, CO Tick Fever and more. Through a non-Igenex lab. Plus, I tested pos for Lyme by PCR (a different test).
Yes, I've had multiple MRIs due to white matter lesions (not uncommon in Lyme patients).
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
negative for everything. Fry found bartonella on blood smear.
will get most recent tests back tomorrow, which im sure will be negative since my white blood count was low when test was done.
My body is not fighting.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Negative Lyme test from IgenX twice, Negative Lyme test from Quest twice. Negative Babesea test from IgenX twice, negative Babesea test from Quest twice. Negative PCR Lyme test from IgenX twice.
MRI normal. Lumber puncture normal in all ways, icluding another Lyme test, which was negative.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
I tested CDC positive for Lyme, but negative for babs and bart.
I was clinically diagnosed with babs and bart ... my response to the meds for those was confirmation of the diagnosis.
No one tests for all strains, so some will test negative.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
There are tons of people here with negative tests from IGeneX. Doctors commonly claim that IGeneX gives "all positives" because either (a) they don't know any better, or (b) they actually do know better, but they strongly dislike anyone messing with their (non)diagnoses.
Here is some information regarding IGeneX which might clear up some misinformation:
quote:At the 2005 ILADS conference, IGeneX Lab Director Jyotsna Shah, PhD,CCLD, MBA, said that IGeneX scored better than 95% in the stringent NY proficiency tests from 2001-2005.
Out of 58 labs, only IGeneX had a perfect score on Western blot proficiency. In recent tests for 327 patients, 238 were identified as positive by IGeneX criteria. Only 112 would have been correctly diagnosed using the CDC surveillance criteria.
In testimony given at the Informational Hearing on Lyme Disease: Issues in Diagnosis and Reporting, Wednesday, February 25, 2004, to the California Legislature Senate Committee on Health and Human Services (Deborah V. Ortiz, Chair) Jyotsna Shah, PhD, CMLD, MBA, Vice President of Research and Development Dept. and Laboratory Director of Clinical Reference Laboratory, IGeneX Inc. of Palo Alto offered the following:
"For the year 2003, just to give you an idea, we had tested 698 patients suspected of Lyme Disease. Three hundred and ninety-four were positive by either Western blot or antigen test or PCR. If we had gone by the CDC criteria only, we would have missed 70 percent of this 394 cases."
In other words, 56% of the Lyme disease tests performed by IGeneX Laboratory in 2003 were positive.
This testimony is on the public record and is available online as part of the recording of the complete hearing at www.calchannel.com Go to Search Archive, Browse by Month (February 2004), then to February 25th (listed as 022504), Senate Info- Hearing, Health and Human Services - Lyme Disease and hit "watch."
If 56% seems high, remember that these are not people pulled off the street and randomly tested. These are people already strongly suspected by their doctors to have lyme disease, whose blood has been collected and sent to IGeneX for testing.
You would think numbers like these would convince people that IGenex does NOT simply give everyone a positive test.
However, the IDSA continues to spin that story to suit their own twisted purposes, and doctors continue to believe it because that's easier than actually thinking for themselves.
But let me tell you how I really feel...
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I tested negative twice w/the CDC test then positive w/Igenex.
Two good friends both tested negative at Igenex but are in lyme treatment anyway.
There is NO test 100% reliable, although Igenex is very good, Lyme should always be based on a "clinical" diagnosis of symptoms by a Lyme literate Md.
99% of my symptoms have been nerve pain..still not one Md could diagnose me.
posted
My Lyme was positive the first time through IGeneX, and even positive through Quest several months later after having started antibiotics.
Also, my babesia was negative the first time through IGeneX, so I was surprised to get a positive for babesia several months later through IGeneX.
This tells me that IGeneX doesn't fudge results - they just don't want to pay for all the people who would eventually turn positive - too much money in treating people for decades for depression, anxiety, acid reflux, arthritis, etc...
*** I forgot to add, the second time I was tested for babesia and it came back positive, I had my doctor order the southeastern panel, even though I live in the northeast. I'm not sure if they test for different strains of babesia or not, but if they do, I'm living proof that it wouldn't hurt to have your doctor order a panel from another area of the country.
I'm actually tempted to get tested for the midwestern or western strains of bartonella and ehrlichia. My ex-husband was in the Navy, so my bugs could be worldly.
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yes
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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