posted
It just seems that Igenex and Bowen are the labs to use if you want a positive result. Does anyone know how many tests return as negative? Which lab: Bowen or Igenex would you consider most accurate and reliable? How are labs rated and by who?
Posts: 6 | From Atlanta, GA | Registered: Dec 2005
| IP: Logged |
posted
I've known quite a few people going to the FFC who use Igenex and they came back negative. I also know another woman who, although she had a negative from Igenex, went to an LLMD and was clinically diagnosed for lyme.
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
It's hard to get a positive even with a reputible lab that specializes w/ TBDs.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I tested negative per CDC guidlines with Igenex. My current infection was listed as IND. Far from positive, but LLMD clinically diagnosed based on symptoms.
-------------------- "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
| IP: Logged |
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I tested positive by CDC standards with Igenex.
My son tested negative, even by Iegenex standards. However, his tests showed Lyme relevant bands. That, along with symptoms, prompted treatment. A month of treatment brought out two clear bulls eye rashes as herxheimers. Clear proof of infection. He is now recovering very nicely in treatment.
Igenex says they have about a 64% rate of positives in their testing. However, as you see, a lab that reports all bands is very helpful, even with a negative test. They are accepted by Medicare, which is also an issue.
posted
Thanks for the response; I did not mean to sound skeptical. I guess that people who have tested negative and went on to find that they had some other ailment would not be here to post. My son may have lyme; we do not know. We don't know if he was bitten by a tick and we did not observe a rash. He has been sick with a mysterious illness for over a year now and conventional medicine has been unable to figure out his illness. He has a lot of the classic lyme symptoms but without having seen a tick or a rash makes it so hard to to make the lyme diagnosis since we do not live in an endemic area. The only reason that we give lyme consideration is that we visited California a month or two before he became noticably ill. I have been communicating with people in California regarding the frequency of lyme and tick counts in areas around Muir Woods and Lake Tahoe. If anyone has any recent data on these areas please let me know.
AC
Posts: 6 | From Atlanta, GA | Registered: Dec 2005
| IP: Logged |
bettyg
Unregistered
posted
Welcome AC and sorry to read about your son's lyme.
I tested positive at IGENEX; 1 + CDC & 1 neg CDC.
Tested this year for co-infections at Bowen; NO co-infections but advanced lyme 1:16.
Please shorten your long paragraphs to 6-8 lines of text and double space for us chronic lymies. You see we are unable to comprehend that much without breaking things up for our long-term lyme.
Also, go to TREEPATROL'S NEWBIE LINKS. Print it off, check off most important stuff you read 1st as there are months of reading there.
Lots there on IGX, MDL, & BOWEN labs.
IP: Logged |
posted
My first test at Igenex was negative. After a month of ketek, it was indeterminate, but w/significant positive bands.
The antibiotics are helping. Although they've never specifically said so, I presume I've been clinically diagnosed positive, and continue to be on abx.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
| IP: Logged |
posted
I don't know much about Igenex, but Bowen tests negative for less than 1%. I was suspicious until I learned that Bb is opportunistic.
Therefore, most people carry it, much like Epstein-Barr or Herpes, but just because you have Bb doesn't mean you have Lyme Disease. If you have an underlying immune weakness, however, it can wreak havoc. So little is understood...
There are two things that make Bowen a great test. First, it tags the spirochetes directly, eliminating the chances of the Type-II error that afflicts the other tests that look for antibodies (which aren't present in chronic cases like myself).
Now you probably say what's the use of a test that only tells you if you have Bb, as opposed to Lyme? The answer is the other distinct advantage that is unique to Bowen: they tell you the concentration. Using some form of titration, they come up with this exponential scale:
Numbers under 2, I think, generally mean Lyme isn't an issue; under 16 means you may have a subclinical case, but it's probably not the signficant factor. 16 and over means you've probably got Lyme Disease.
I tested back in October and came up with a 1:128, so there's really not much doubt in my mind, especially since I fit the symptom profile to a T.
Good luck in your journey.
Posts: 45 | From Pittsburgh, PA | Registered: Nov 2005
| IP: Logged |
Please don't believe that endemic arguement. I am also in Atl, and very long story short, am positive for Lyme by CDC standards (which are more difficult to become positive by).
I contracted it via my backyard! I did have an infection area around my elbow that did swell and have its own fever. No bullseye though.
Dr. diagnosed it as a spider bite (or something similar). I had been clearing branches out of an ivy-covered area of my yard, and the infection occured a few days later.
I recently was telling a friend that I had Lyme, and he said a neighbor of his also got it from his back yard...also in ATL
Feel free to email me if you have any additional questions.
Bill
[ 14. December 2005, 09:44 PM: Message edited by: Bill ATL ]
-------------------- Bill
**Question everything...it may save your life!!!** Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
| IP: Logged |
posted
Lyme is everywhere, cases reported from CA and GA both. If low number of cases, probably because docs and patients have bought that endemic business. Plus, the number of reported cases is only about a tenth or less of the actual cases.
Many people did not see the tick that bit them or get the rash. I did not. Medical establishment doing a very poor job with tick borne diseases.
Here is a report on lyme in CA, in pdf file so you need to have adobe to read it. I don't agree with everything it says, the vaccine for instance has been taken off the market because of adverse effects, but the map shows the disease can be found just about everywhere in the state.
If you want to know more about Lyme in Georgia, google that phrase and I bet you find something. And contact Bill for more info.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I never saw the tick, never saw a rash, but I have CDC positive tests for Lyme, Bartonella, and Ehrlichia. SOMETHING got me, somewhere.
I've lived in NC, IA, IL, WI, MI, and CA. Could have been any or all of them.
There are over 85 support contacts for Lyme in CA alone. That should tell you something about the incidence in this state.
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
AC, I was bitten many times in the Sierra Nevadas. Not Tahoe, but Mammoth Lakes where I grew up, just a hop over the mountain range. My daughter likely got Lyme from me and came back CDC positive, while I came back IND.
My mother who has been diagnosed with MS also became sick in Mammoth Lakes a very long time ago. She even remembers a bull's eye rash that she thought was ring worm. She will be seeing my LLMD next month.
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
So sorry your son has been sick for over a year with no diagnosis. That is not unusual for people with Lyme. Some have gone 20 or 30 yrs before diagnosis.
Unfortunately, too many of the drs in the South have been told that "Lyme is not a problem here", so they don't consider it as a possible diagnosis.
I had a dr tell me "We don't waste our time studying an illness that we'll see only one bizarre case in a lifetime." I've told several drs - if we didn't look for cancer, we could say we didn't have cancer in SC.
That partly explains why the number of cases is so low compared to the northeast.
Concerning Lyme in Georgia, I find the following very interesting.
In "Everything You Need to Know About Lyme Disease" (my copy pub in 1997), chart on p.8 says: Cases Reported Since 1980, so I'm guessing that would be through about 1995.
Georgia - 1,177 This would average 78.5 cases a yr for 15 yrs.
Then something apparently happened and the numbers dropped dramatically. CDC Reported Cases are: 1996-'99: 1, 9, 5, & 0 (total of 15 in 4 yrs) 2000-'03: 0, 0, 2, & 10 (total of 12 in 4 yrs)
Average drops to 3.3 cases a yr for last 8 yrs. Total cases 1980-2003: 1,204
Quote from CDC "Lyme Disease---US, 2001-2002" "LD cases were underreported by 6 to 12-fold in some areas where LD is endemic..." So we can assume that statistics do not give an accurate picture.
The CDC says: "Disease endemic to county- A county in which Lyme disease is endemic is one in which at least two definite cases have been previously acquired OR in which a known tick vector has been shown to be infected with B.burgdorferi."
With over 1,200 cases in Georgia, there are probably a lot of endemic counties.
IGeneX and Bowen - I believe an important reason the percentage of positives is so high is that those tested have reason to believe they have LD. The labs are not testing a cross section of the population.
Read "Basic Info" at www.ilads.org #3: "Fewer than 50% of patients with LD recall a tick bite..." #4: "Fewer than 50% of patients were LD recall any rash. In some studies this number is as low as 15%..."
How old is your son? Has he been tested for Lyme yet? Do you have a LLMD (Lyme Literate Med Dr)?
Keep in touch & ask as many questions as you need to.
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
posted
CBB - the reason the numbers dropped dramatically in GA was because the CDC told doctors there wasn't any lyme in the state and to stop reporting it. These doctors had seen EM rashes, which are said to be diagnostic and reported them!
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic