lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
could you just sign in here? i know we did this b4-but if you can just give me a head count-and any other info you want to leave...like you decided not to tx or tx helped or tx didn't help...
thanks a lot
1. me...i'm both igenex and cdc neg but llmd wants to tx based on sx
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
In my three years here, I've read at most 5 people w/negative tests and that may be overestimated. By this, I mean no significant bands on their IgM/IgG. I've NEVER, EVER heard of anyone without at least band 41 on their test. Most have similar bands too and Igenex always kicks out INDs on 31,34 too based on guessing.
There's a guy here with solid stats from many members on positive bands and overall percentages. I believe ChuckG.
Overall, I believe Igenex is pretty likely to toss out a positive test result. Though the population is skewed here, it still bothers me and their explanations to date have not satisfied my logical reasoning. Of course, most here will say they are good as gold..blah blah. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I am neg on Igenex but only came up pos on band 41 and I think 34. But did come out positive for Erhlichia, RMSF, EBV, and HHV6, and MYCO.
So, I think I am in cyst form with Lyme and that I prob. have had it over 10 years. My last CD 57 was 45.
Posts: 151 | From south east | Registered: May 2010
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posted
Three people in my family tested with Igenex. Two people had negative test results and one test came back positive. I had a bullseye rash too so I know my positive result was accurate.
Posts: 45 | From New Jersey | Registered: Sep 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you all so much.
any more?
i'll just do this 24 hrs and then show him results
i did find out tonight his best friend who is a chiro in KC knows and speaks highly of dr c in mo. that will help my cause!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I agree with SeekHelp, if I had a negative Igenex and CDC test, i'd definitley wouldn't be treating Lyme. I have very rarely seen Igenex be negative
Posts: 306 | From NY | Registered: Sep 2010
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quote:Originally posted by nybasketball212: I agree with SeekHelp, if I had a negative Igenex and CDC test, i'd definitley wouldn't be treating Lyme. I have very rarely seen Igenex be negative
I think Seek was saying that treating without any positive bands at all would be odd.
Many, many people treat with overall "negative" results.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Nagative for Lyme through Igenex.
Positive for Bartonella henselae through Igenex. Positive for Babesia microti through Fry labs.
Had symptoms typical of CFS for 15 years. Made appointment with Lyme doc to "rule it out."
Did not doubt my diagnosis, especially after my first huge herx on Minocycline.
Have been herxing and steadily improving for 3 years. Only wish is that I'd found out sooner!
posted
I was igenex positive (5 bands) my first testing and have been negative ever since. I was neg. for bart and babs.
This is from Dr. B talk on March21. "The sicker you are, the less reliable the tests; lyme burrows deeper and is no longer easily detected in blood"
Posts: 433 | From new york | Registered: Dec 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thanks again. i'll leave this up til tonight in case there are more
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I was Igenex negative with only positive on band 41. I was babesia equivocal, and yet have responded to every protozoa/malaria drug, and have improved significantly with treatment.
Posts: 964 | From san diego | Registered: Oct 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I was officially CDC and Igenex negative on my Igenex WB.
I did have some IND and positive bands.
I was positive only on the 31 kDa epitope confirmation test.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
when my son was tested by the LLMD, the LLMD wanted me tested too as well b/c of my autoimmune disorders. I tested negative and the LLMD said that if I later had "symptoms" and now I know what to look for, to consider retesting, but at this time, LLMD felt there was no reason to pursue further. I feel fine and did when I was tested. LLMD is treating my son who tested positive for LD. He tested negative for co-infections, but presented positive for bartonella by clinical assessment & the journals I kept on our son.
Posts: 54 | From Texas | Registered: Oct 2010
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Loripink was posting here not too long ago about how sick she's been for a few years, but has a negative IGenex test ( I think she had a couple positive bands ).
I spoke with a lady who was getting IV's at my docs office, and she was telling me how she's always had a negative test, but decided to treat anyway. She's been treating for 3 years and is about 80% better ( from near death ). If I recall correctly, she only had band 39 and an IND on 58. She didn't have 41...which I thought was odd.
Posts: 1142 | From South | Registered: Dec 2010
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posted
I had a CDC negative, but barely, and an igenex positive. I am treating just as though I had a positive test
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
up
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Same as lymetoo......if I had not treated with a clinical diagnosis, I wouldn't be nearing remission right now.
Sometimes after you start treating, the WB comes back positive, thus backing up a clinical diagnosis. This happened to me. Negative test to begin with, later tested positive.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I tested neg. and I had the bull's eye 11 yrs. prior and lots of symptoms. I did have some positive bands, but don't know right off the top of my head what they were.
posted
I tested negative through Igenex with only positive on band 41 and 39 IND. Also neg for co-infections. After I posted my results on here there were a few people who said not to treat based on that.
Thank God I didn't listen to them. My pain is 50% better, I no longer have that burning skin feeling all over, I have no more stabbing pains, and no more shooting pains in my head.... and Im progressing.
I have hope again that my life will return to normal.
With all my symptoms, it was so obvious it was Lyme...test results mean very little.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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posted
my daughter is IGenix and CDC/NYS positive through IGM, but negative IGG. She is positive for Erlichea and negative for Babesia through IGenix. She is positive for Baronella and Babesia through Frye labs.
My husband is negative through IGenix. He had some reactive bands: IGG 39 IND and 41+. IGM 31 IND and 41+. He tested positive for Erlichea granulocytic, HGE through Igenix. He tested negative for Babs and Bart through Igenix, but positive for both through Frye labs.
He grew up on long island and planted trees for several years on the west coast. He has had hundreds of tics.
He is completely disabled by his symptoms.
Long story short, he is in treatment and making progress.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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quote:Originally posted by Jennifer70: I tested negative through Igenex with only positive on band 41 and 39 IND. Also neg for co-infections. After I posted my results on here there were a few people who said not to treat based on that.
Thank God I didn't listen to them.
- Exactly. Some posters are not THINKING. It would be a tragedy for someone with a negative test, tons of symptoms and tick bites to go untreated.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Healthy people without symptoms generally don't get tested thru Igenix, hence, the low amount of negatives. Most people that get to the point of testing by this lab, have the symptoms of lyme disease, and most likely have it. That's why there are so many positives.
Posts: 418 | From NJ | Registered: Sep 2007
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posted
Negative through elisa, Igenex, CDC and my CD57 is normal yet clinicaly diagnosed with chronic neuro lyme?
I have two known ticks bites in three years from dutchess county. i have bad neuro issues that got much worse over the last year. Since on abx for 4 months I have developed bad joint and muscle pain all over...only while taking the abx..when I stop them for a few days the pain eases. I was told that is a herx and how I can be sure it is lyme? Is this true?
First igenex had only band 41+ and 58+ After 2 months of abx they redid the test and I have many positives and IND now but still considered negative.
I was also negative for babesia and bart trhough igenex yet my llmd feels i strongly have babs by my muscle pain and vertigo and serious cognitive problems that have left me now disable and out of my job
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All--
The Western Blot (WB) test is a REALLY SH-TTY test-
Very Unreliable and has Not gotten ANY better than when it was designed in the 1940s--
Igenex Lab just dose the Best job using this Sh-TTY test--
Personally I put ZERO faith in my Negitive Igenex test--- Glad I did --
I had a picture Perfect Lyme Bullseye rash on my leg about a month before I started getting sick but I did not know what it was or meant-
After going threw dozens of Ductors and spending 18 LONG Painful years being Sick as Hell
I saw a TV show about Lyme and they showed a picture of a Lyme Bullseye bruise EXACTLY like I had on my leg before I started getting sick --
Went to a Lyme Doctor -- Igenex WB tests came back Negitive --
Lyme Doctor said -- I had Lyme and Babs Written All Over Me --
Started Treatment and and started feeling Better in weeks--
Now after a few years of treatment --
I HAVE MY LIFE BACK and FEEL GREAT --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
I tested positive on the first test given then negative on the following two tests. I think one was WB but not sure about the other...getting more info from my doc today or tomorrow. Neurologist is saying RSD, PCP is saying to take the perscrit. given by said neurologist and see what happens. Not comfortable being a guinea pig to be honest. Having many symptoms of Lyme for the last 2 years....
Posts: 98 | From Maytown PA | Registered: Apr 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thanks again all. this thread is still getting attention so i will leave it. i'll close the similar thread in general. thankyou very much-don't know the exact count but i know it was more than 24 neg in 24 hrs...
and we know the research backs us up on why that is now
twisted-i pmed you. impt for you to keep reading and learning on here. maybe some experienced ppl will begin talking to you. lyme is very complicated and you will soon understand it is a blessing you tested pos and are able to get tx early
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Just read the article by Shaller in the 13 doctors book by Connie.
He says ONE band positive means that you have Lyme in your system.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ys-peace...i think a lot of llmds say that. also the idea that no pos bands often means you are so sick your immune sys prevents test from showing pos
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by peacemama: Just read the article by Shaller in the 13 doctors book by Connie.
He says ONE band positive means that you have Lyme in your system.
My PCP told me the same thing.
Trouble is, he only gave me 10 days of abx's and pronounced me cured of Lyme.
But he was so adamant that just one band meant it was in my system. Too bad he was ignorant about how to get rid of it.
Posts: 1142 | From South | Registered: Dec 2010
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quote:Originally posted by annier1071: First igenex had only band 41+ and 58+ After 2 months of abx they redid the test and I have many positives and IND now but still considered negative.
Proof you have Lyme Disease.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
Treated for 4.5 months. We based it on clinical symptoms. I was very early stage, started RX 2 months after being exposed.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
arkie-are you better?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Sadly not an early diog nor being treated for lyme. doc thinks RSD and is treating me accordingly. Thank you all for the help thus far!!
Posts: 98 | From Maytown PA | Registered: Apr 2011
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posted
yup, everyone should know that I went from Full neg in all my great Boston Doctors eyes (and i hope your sensing my sarcasm here)
to a 100% no denying Lyme diagnosis.
oh and they didn't care that the steroids were making me worse and i was going down hill fast they made up their mind to let me die in Boston as long as they didn't have to admit i had Lyme.
it's by the grace of God I got the right people in my life and got me on the right Lyme Track, I am much better now and getting better all the time.
thanking you everyday my heavenly father Jesus
your grateful child Scott
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by LSG Scott: I am much better now and getting better all the time.
thanking you everyday my heavenly father Jesus
your grateful child Scott
This made me smile Posts: 1142 | From South | Registered: Dec 2010
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