posted
Ive taken 5 lyme tests.....all negative except igenex. I will seriously take 5 more of different types/labs just to see if a single one comes back POSITIVE (other than igenex)!!!!!!
See if standard lyme tests are lets say only 50% accurate...then i should be showing up positive even ONCE in 10 different tests....right?
I know most tests arent sensitive..but i person who seriously has lyme should at least have 1 test come up positive out of 10.
I dont wanna put so much faith in igenex simply because they are giving me the result i wanna see.
SO.....i need a few good lab names/tests. i WANT something else to bring to my doctors table other than a positive igenex test. Help me out folks!
If you got a positive igenex test...did you EVER get a positive test at another lab??????????
Posts: 12 | From Los Angeles | Registered: Jun 2007
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posted
Lyme tests are only 30-40% accurate. What tests have you had performed? If you have just tested positvie by western blot by IgenX try taking other tests that can be used to detect lyme(ELISA, PCR).
Lyme disease is a clinical diagnosis and many people never test positive even though they have Lyme disease so I would assume you do have Lyme disease. Also the results from western blots vary based on if the person who performed the test accurately read the bands or if the lab reported all bands or not.
I had 3 western blots performed by LabCorp and the first two showed banding but since i was not meet CDC requirements my doctor told me I did not have Lyme disease. I KNEW I had Lyme disease because it was the only disease that would cover all of my symptoms so I found a new doctor and was CDC positve for Lyme. I have now tested positive on Igenex also.
If you have more then one band present you have Lyme! Just because it was the result you thought you would get does not mean that it isnt correct.
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You can certainly waste some money trying Quest or Labcorp if you want to.. but please remember this.
Once you get a positive test.. I wouldn't keep testing if I were you... just for the sake of testing.
By doing so it is giving the insurance industry AND the ducks a reason to NOT approve your treatment. You are actually risking cutting your own throat.. or the financial ties that you need by using bad labs to try to get a positive test.
Many folks would be happy having a positive test to be able to obtain treatment that will help them.
Take your results and run with them... and be focused on moving forward and getting well rather than trying to use a negative thing to find a positive. That's my advise.
And going from Igenex to any other lab is like going from prime rib to hot dogs.
And I am not trying to be a smarty pants or nothing.. and am very sincere here with this thought below....
If you decide you don't want to keep testing yourself at this time and have money to spare (you said you'd do many more tests on yourself if needed)... and IF you want to spend your money on tests...
There are a lot of children in need of a Lyme test who can't afford to get one. If you'd want to donate so they could, I am sure Dr. J in CT would be delighted to put the donated test money to good use for his children.
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Tests done by Igenex are not similar to those done in large commercial labs.
Most lyme tests done by commercial labs are done with kits. The reagents in these kits are not as specific as the full panel that Igenex uses. No kits at Igenex. Each WB is done professionally and all bands are reported. Most kits do not include many bands specific to lyme.
Some kits have been found to use reagents for strains found in Europe. Not a very effective measure of lyme in my opinion.
I know Nick Harris. My daughter has worked in his lab. Work done there is top notch, so why go anywhere else.
Posts: 1062 | From CA USA | Registered: Jan 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I tested positive through Quest Just so you know it is possible I dont know a lot about the testing but thought I would let you know-
Posts: 3905 | From USA | Registered: May 2007
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butchieboo
Unregistered
posted
Hey there SOsick....
What are you trying to prove to yourself?
I have gotten both positive and negative results from Igenex and Stoneybrook as well as only negative tests from quest.
Exactly why is because the disease is difficult to detect with blood tests. Therefor attempting to prove anything in the way that you are going about it is impossible.
Depending on how active this disease happens to be when you had your blood drawn...will determine how your IGM test results come out no matter what lab you choose.
On the other hand....depending on the labs reagents and when you were drawn will determine your IGG result...
So you would be proving nothing one way or the other...
Take other suggestions and donate money for those that need a test....
If you really like to waste money....I'll give you my name and address....
only unmarked brown paper wrapped boxes of money will be accepted....
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Others may disagree with me, but here goes....
I have had two positive Bowen tests. Some feel they are no good because almost all turn out positive. Others feel they are the best there is. Various people say the same things about IgeneX,and MDL. Nobody seems to be able to prove it, one way or the other.
I don't think tests matter so much. How many normal people do you know who get sicker when they take ABX? I don't know any. Normals feel better after ABX.
So, I think the best test for Lyme is to do a trial of appropriate ABX or herbal ABX and see what happens. If you herx, then you have Lyme or some other kind of similar infection, like mycoplasma, for example. Normals do not herx.
I am allergic to all ABX that kill Lyme, so I took Samento instead, and herxed so badly I could hardly walk. I used my healthy husband as my "control" and on 15 times the dosage I was taking, he still had no symptoms at all. To me,that was more than enough proof.
Of course, since I take herbals, there is no insurance coverage, so if getting ins. to pay is a concern, you may not be able to look at it the way I do.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Dr. Bransfield's Reason's for Seronegativity the reasons why you can test negative and still have Lyme disease.
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e.: lymphocytic cell walls) 4. Spirochete is deep in host tissue (i.e.: fibroblasts, neurons, etc.) 5. Blebs in body fluid, no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains, 100 in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10. Utilization of host protease instead of microbial protease 11. Spirochete in dormancy phase (L-form) with no cell walls 12. Recent antibiotic treatment 13. Recent anti-inflammatory treatment 14. Concomitant infection with babesia may cause immunosuppression 15. Other causes of immunosuppression 16. Lab with poor technical capability for Lyme disease 17. Lab tests not standardized for late stage disease 18. Lab tests labeled "for investigational use only" 19. CDC criteria is epidemiological not a diagnostic criteria 20. Lack of standardized control 21. Most controls use only a few strains as reference point 22. Few organisms are sometimes present 23. Encapsulated by glycoprotein "S-layer" which impairs immune recognition 24. "S"- layer binds to IgM 25. Immune deficiency 26. Possible down regulation of immune system by cytokines 27. Revised W.B. criteria fails to include most significant antigens
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Many of us have multiple chemical sensitivy. Is it possible that is why we react badly to antibiotics? Just putting that out there. I also respond badly to pain meds, antivirals, etc.
Posts: 12 | From Los Angeles | Registered: Jun 2007
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quote:Originally posted by SOsick: Regarding a Herx...
Many of us have multiple chemical sensitivy. Is it possible that is why we react badly to antibiotics? Just putting that out there. I also respond badly to pain meds, antivirals, etc.
Most lyme herxes will cause you to have Lyme symptoms. Some of the symptoms will be the ones you've already experienced, and others will be "new" ones to you.
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
The Washington Test*)!*)!!
You take a quarter and throw it up in the air, emitting a verbal ejaculation of either HEADS or TAILS!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
This explains why those with chronic lyme disease will get positives with IgeneX and not other labs.
The IGeneX Western BIot was designed to be effective in all stages of Lyme Disease, not just early Lyme. The current Western Blot, in most clinical laboratories, was designed for early Lyme Disease. The publications referring to this generic blot studied patients with Lyme disease within the first few months after a tick bite and an EM rash.
IGeneX designed the blots differently, based upon the principles discussed in the publication by Ma et al. J Clin Microbiol,1992, 30:3 70-79 (see graph below). Pedigreed samples were obtained from Yale, University of Connecticut UCON, and a Hospital in Old Lyme, CT. These samples came from patients with a physician diagnosed EM rash and symptoms of active Lyme Disease. The difference from the CDC studies was that these patients were not just early Lyme Disease < 5 months), but also mid-Lyme > 5 months to 1 year and late Lyme disease > 1 year.
In addition, instead of using just one strain of bacteria, two strains (B 31 and 297) are used to make IGeneX Western Blot strips. This allowed IGeneX to have alI the Lyme antigens more or less equally represented.
IGeneX also uses a 12.5% polyacrylamide gel to get better separation of the important 31 kDa to 39 kDa antigens. Dressler et al. JI., 1993, 167:392-400 only used a 10% gel and had poor separation of the 31 to 39 kDa antigens. That publication was a cornerstone of the CDC surveillance criteria published in MMWR 1995, 44:590-591.
In summary the IGeneX Western BIot for Lyme Disease has:
High sensitivity in aIl phases of disease. Ability to detect Lyme antibodies in aIl parts of the US. Ability to detect late Lyme due to the presence of 31kDa and 34 kDa antigens. Ability to detect immunization by European strains of Borrelia due to high uniform antigen concentration. The IGX Western Blots can accomplish this due to the relatively equivalent amount of each unique antigen used in our strips. This is done by harvesting each cell line at an optimum phase.
The IGX Western Blots have been evaluated and have reactivity against various B. burgdorferi strains including: European strains B. afzelli and B gaiinii; the Japanese strain of B. japonica; and the sub-strains of B. burgdorferi from Colorado, Missouri and Texas.
The high amount of antigen to OspA-31kDa and 34kDa gives the IGX Western Blots the ability to detect patients with persistent/recurrent (chronic) symptoms of Lyme Disease.
posted
Has anybody tried the new antigen test offered through Central Florida Research Lab, and if so, what were the results like?
Posts: 13171 | From San Francisco | Registered: May 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wondering if this is something Columbia Research Center will be working on...better tests for all the different bacteria.
I also recall Amy Tan speaking at a hearing in Sacramento, CA.
She said that she was in an experimental program that had her blood tested at many labs.
The results were all over the place. No two a like.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Thank you everyone for your input. I wonder too...about the Central Florida lab mentioned above.
Posts: 12 | From Los Angeles | Registered: Jun 2007
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butchieboo
Unregistered
posted
Believe it or not I was just talking to someone who said that Bowen labs has been bought out!
Does anyone else have info....did'nt her son (or at least someone who said he was her son) post here awhile back to say she was getting FDA approved?
So anyway....if some other outfit is willing to buy her out....I guess they(whoever "they" may be) thinks her methodology is accurate enough....
Hey there Klutzo....have you tried grapefruit extract for your treatment? There was something else I tried other than cat's claw way back in 98 or something....
I had to get it from the company....supposedly really powerful stuff.... Can''t seem to remember what it was right now...dang lyme brain....
posted
My daughter had a positive Western Blot from Lab Corp...and a positive immunoblot from Immugen before going to her LLMD...so it is possible to test positive at non Igenex labs...
good luck to you
Posts: 217 | From New Jersey | Registered: Apr 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
With regards to Bowen labs, they no longer exist and neither does the QRiBb.
Some of the staff moved on to Central Florida Research, although they are not officially connected to Bowen.
CFR does the Flow Cytometry test. I had both done. Got the highest score on QRiBb, and negative on Flow Cytometry, which is supposed to be a more accurate test. Go figure.
I have heard of people on lymenet testing positive through CFR, and I think its probably a really good test, despite my lack of positive validation.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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