I'm just wondering how many people with lyme actually tested positive with a blood test. I've been reading here and I am now under the impression that very few actually test positive for the disease.
Thanks for your responses!
Posts: 50 | From Virginia | Registered: Jan 2006
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bettyg
Unregistered
posted
I tested blood positive thru IGENEX but NOT Mayo Clinic since they didn't test ALL THE BANDS!
Because you are brand new to the board, you've read a little of the many posts. I would disagree with you; I feel there are MORE blood positives than not.
The biggest thing is WHERE was the western blot done. If it wasn't:
Igenex, MD Labs, Bowen ... then ALL the strains & bands were not tested.
I've been on the board 1.5 years now ... this is what I've seen.
Welcome to the board....much experience/knowledge on this board.
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Thanks for responding. I'm just trying to see if there are more people out there like myself, with the same diagnosis.
Posts: 50 | From Virginia | Registered: Jan 2006
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posted
I've tested positive 3 times since 1994. The most recent western blot was done about 2 weeks ago and again tested positive. I've only used the labs that my insurance/MDs use. I'll be finding a LLMD for treatment this time.
~Kelly
-------------------- ~Kelly
"Had I not known I was dead already, I would have mourned my loss of life."
Posts: 22 | From New Jersey | Registered: Jan 2006
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hi,
i tested positive for bartonella, lyme and babesia.
was retested yesterday so i'll wait on the results of those tests after 3+ yrs of tx.
best, hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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You've tested positive three times since 1994?? Is this because the infection keeps coming back or is it because you keep getting bitten by ticks over and over again?
Posts: 50 | From Virginia | Registered: Jan 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Both my son and myself tested CDC positive for Lyme. Neither of us was tested by Igenex.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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You've tested positive three times since 1994?? Is this because the infection keeps coming back or is it because you keep getting bitten by ticks over and over again?
Skbland,
Some years I've ben bitten frequently by ticks but, last year for instance, I was repeatedly attacked by misquitos and had only one known tick bite.
*I think* that the Lyme is chronic. I've been sick and only getting worse for at least 12 years.
I was treated for the lyme twice (in '94 and in '02) and have never felt any better. I suspect that I have a co-infection of some sort. I'm still trying to figure out why I have a + ANA and other abnormal labs.
~Kelly
-------------------- ~Kelly
"Had I not known I was dead already, I would have mourned my loss of life."
Posts: 22 | From New Jersey | Registered: Jan 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I tested strong positive for Lyme through Igenex but negative for all the other tickborne infections.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I test positive by ELISA at regular labs, equivocal on Western blots---IgM at regular labs.
I test positive Western blot IgM and IgG at Igenex and at MDL.
My spinal fluid has tested highly positive on all tests western and ELISA by a local lab.
Coinfections test sometimes positive and sometimes neg. This I havent figured out at all.
I feel "lucky." B/c I have numbers to point to.
Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
several + ELISA and 1 +PCR. On WB I test + on the lyme bands but never come up with the magic combo the CDC conciders +.
Posts: 1572 | From Pa | Registered: Jun 2001
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JimBoB
Unregistered
posted
AND to ADD to ALL of THAT, I have NEVER been TESTED! Jim
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posted
Thank you to everyone who has responded. It helps to know the test results of others here.
Isilme....I'm guessing that lyme disease can be contracted by misquitos too?? Mostly everthing I have read says only tick bites can give you lyme, but I think (I can't remember now) I read that you can get lyme by fleas, black flies, misquitos and ticks. I don't know where I read this though...I think my brain is on overload now.
Posts: 50 | From Virginia | Registered: Jan 2006
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I've been in treatment for over 3 years now and have had Lyme since at least 1985.
I tested negative in 1991 when I was bitten by a deer tick and had a bull's eye rash. Don't know what test or what lab was used.
Had burning rash on toe and fever, aches, pains, severe headache and fever and tested CDC positive IgM and IgG when first diagnosed through Quest in '02.
Had numerous positive C6 Peptide Assay tests for Lyme and negative Babs, Ehrlichia and Bartonella tests done through local hospital.
After a while, treatment not working and had positive HME and Bartonella tests through local hospital.
Then changed docs and had Igenex/MDL testing done.
Through IGeneX I had positive PCR through urine for Bb (confirmed by southern dot blot), CDC positive IgM and IgG Western Blot, equivocal Babs IgM and IgG titers negative on all other Babs tests, negative on all tests for Bartonella, equivocal IgG for HME.
Through MDL had positve elisa for Bb, CDC Positive IgM Western Blot, Positive for Mycoplasma fermentiens, negative for all other coinfections on all tests.
This blood was taken at the same time and sent to 2 different labs. You can see how different labs come up with different results. Even the good ones.
Another one of my doctors takes Quest labs very often. I am always positive on the elisa and always have band 23 postive on the IgM and IgG. The other bands come and go.
So, in my opinion, tests are very unreliable and the only way you're going to get a good idea of the truth is by spending a lot of money. If you're doing it all out of pocket, it can be exhorbitent (OK, I used a word I shouldn't have, I can't spell it).
I haven't had a test in about 6 months now. I haven't even addressed the Bartonella yet. We treated Babs and I got a whole lot better. I've had numerous "cyclines" so I figure the Ehrlichia and mycoplasma are under control. Once I spend some time treating Bart, and Lyme some more, I may consider taking another crack at some tests. For now, I'm pretty certain I'd come up with confilicting info.
Hope this helps,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
I had 5 ELISA's and one western blot through Quest that all came back negative. The WB from Quest had 2 bands positive. I was tested with a western blot IGg by Igenex a year and a half after symptoms started to appear. It came back with 8 bands positive.
Posts: 146 | From New Jersey | Registered: Jun 2005
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posted
My son tested high positive to IgG and IgM thru Igenex for lyme. My husband tested positive to IgG and Ind to IgM for lyme too.
Posts: 127 | From Rock Tavern, New York | Registered: May 2005
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posted
I have tested positive for lyme via Elisa, PCR and a CDC positive IgM western blot. I was infected in 1996. While lyme is supposed to be a clinical diagnosis, being serologically positive sure helps when dealing with insurance companies to get the best treatment.
I was also positive on various tests for babesia, erlichia and bartonella. Phew!
Posts: 98 | From MA | Registered: Dec 2005
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BostonLyme2005
Unregistered
posted
Hi,
I tested neg on everything I had done through my PCP, until I went to Igenex!
They said my first run was pos. Then second run was neg. I was pos. on the 18KDa, which is highly suggestive of exposure to lyme.
Other bands were pos. and I had 5 IND's.
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posted
I tested negative at Igenex the first time. After a month on abx, I tested "Indeterminate". A couple of positive bands were considered "highly specific" per my LLNP, so I'm being treated based on that and my clinical presentation.
Maybe I'll be tested again sometime in the future and be found positive.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I tested repeatedly negative for a few years. I was infected at least 12 years before diagnosis and just wasn't making any antibodies, I guess.
I had one + band on a WB when I was diagnosed and began treatment. As treatment continued I began to show more bands and eventually tested positive, I think, from Stony Brook.
I also had a positive Babesia test once.
All my other bloodwork has been - or equivocal and continues to be.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
For me, six strong positive bands (double and triple at 23-25 and 31) plus 5 equivocals on IGM, CDC positive. Eight equivocal bands on IGG.
For my 13 year old: five positive bands on IGM, also CDC positive.
Both through IGeneX.
Neither of us had been on antibiotics or started any treatment yet.
I had a negative ELISA (of course. They're still using that test WHY?) and a negative lumbar puncture, though an abnormal MRI with multiple frontal lobe brain lesions.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
ELISA was positive Western Blot by Quest was negative with only 3 positive bands
Igenex was IND because on the IGg I had 4 positive and 5 IND and on the other part 1 positive and 3 IND.
Bowen positive 1:128
My LLMD says that based on my living in Northern CA and remembering ticks, the 4+ years of symptoms, and the specific bands that were positive on my test that I have Lyme.
My insurance company says that because of the CDC criteria I definitely do not have Lyme. The infectious disease Dr. says that I am risking my health by seeking Lyme treatment and I should focus on finding out the real cause of my symptoms. I have gone that way for 4+ years and I am still doing the tests (MRIs, nerve conduction, etc) hoping that they may finally see it to be what I am my LLMD know it is- Lyme.
I started treatment (Ketek, that I pay for out of pocket) a month ago. I am finally feeling hopeful that I will get better.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
I have a deep-seated case of lyme which I have had I think since birth. I tested positive with Bowen (great test) and then had three consecutive negatives with both Quest and Igenex.
Finally J. clinic was able to extract positive bloodwork by putting me on Biaxin for 10 days and then doing the dot blot urine test through Igenex.
The worse the case, the harder it is to get positive bloodwork IMO.
Lymelady
Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Tested positive Igg for Borrellia through Igenex even CDC positive.
Igm was negative for CDC criteria and indecisive for Igenex criteria.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
IgeneX positive IgG Western Blot with 4 positive bands (3 specific to lyme bacteria) and 4 Equiv. IgeneX IgM negative with 3 equiv. I had an equivical IgeneX Elisa for IgG/IgM, negative for IgM alone. I'll be seeing a LLMD in April to determine if I have co-infections. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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-------------------- June Posts: 22 | From CT | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by lucy96734: ELISA was positive Western Blot by Quest was negative with only 3 positive bands
Igenex was IND because on the IGg I had 4 positive and 5 IND and on the other part 1 positive and 3 IND.
Bowen positive 1:128
My LLMD says that based on my living in Northern CA and remembering ticks, the 4+ years of symptoms, and the specific bands that were positive on my test that I have Lyme.
My insurance company says that because of the CDC criteria I definitely do not have Lyme. The infectious disease Dr. says that I am risking my health by seeking Lyme treatment and I should focus on finding out the real cause of my symptoms. I have gone that way for 4+ years and I am still doing the tests (MRIs, nerve conduction, etc) hoping that they may finally see it to be what I am my LLMD know it is- Lyme.
I started treatment (Ketek, that I pay for out of pocket) a month ago. I am finally feeling hopeful that I will get better.
Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans by the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful in the later stages of disease.
Lyme disease is prevalent across the United States. Ticks do not know geographic boundaries. A patient's county of residence does not accurately reflect their total Lyme disease risk, since people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure for each individual.
Lyme disease is a clinical diagnosis. Spirochetal infection of multiple organ systems causes a wide range of symptoms. Familiarity with its varied presentations is key to recognizing disseminated Lyme disease. Case reports in the medical literature document its protean manifestations.
Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture proven Lyme borrelial infection.
Fewer than 50% of patients with Lyme disease recall any rash. Although the bull's eye presentation is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly.
It is important to know that the Erythema Migrans rash is pathognomonic of Lyme disease and requires no further verification prior to starting 6 weeks of antibiotic therapy. Shorter treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.
The CDC surveillance criteria were devised to track a narrow band of cases for epidemiologic change and were never set up to be used as diagnostic criteria nor were they meant to define the entire scope of Lyme disease. This is stated in the 3/25/91 NIH report.
The ELISA test is unreliable, and misses 35% of culture proven Lyme (only 65% sensitivity!) and is unacceptable as the first step of a two step screening protocol. (By definition a screening test should have 95% sensitivity.)
Of patients with acute culture proven Lyme disease, 20-30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus, the IgG Western Blot is even less sensitive in detecting chronic Lyme infection yet the IgM Western Blot may work. For "epidemiological purposes" the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34.
These bands are so specific to Borrelia burgdorferi that they have been chosen for vaccine development. However, for patients not vaccinated for Lyme, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. When used as a part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports on all 16 bands as part of their routine comprehensive analysis. Laboratories (such as SmithKline) that use FDA approved kits (for instance, Mardex's Marblot) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer.
These rules are set up in accordance with the CDCs surveillance criteria. and increase the risk of false negative results. These kits may be OK for surveillance purposes, but offer too scanty of an analysis to be useful in patient management.
A preponderance of evidence indicates that active ongoing spirochetal infection is the cause of the persistent symptoms in chronic Lyme disease.
There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating histologically and in culture that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.
An uncomplicated case of chronic Lyme disease requires an average of 6-12 months of high dose antibiotic therapy. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long term antibiotic therapy.
Many patients with chronic Lyme disease require treatment for 1-4 years, or until the patient is symptom free. Relapses occur and maintenance antibiotics may be required. There are no tests available to assure us whether the organism is eradicated or the patient is cured.
There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to Borrelia burgdorferi's antigenic variability and its various antibiotic resistances.
Antibody titers for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick transmitted diseases) should be performed. The presence of co-infection points to probable Lyme infection, and when left untreated, increases morbidity and complicates successful treatment of Lyme disease.
Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, and other neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, hypochondriasis, somatization disorder and patients with difficult-to-diagnose multi-system syndromes.
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