Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Hi Pam I don't believe Igenex will test without your Dr. ordering it.I spent 900.00 on tests and they wouldn't even send me the results...only to my Dr. (Makayla'smom) On Fri, Aug 22, 2008 at 8:08 AM, Pam Norman <pam_norman@...> wrote: > Hi all > > I have an appt coming up with a LLMD in northern WI & thought I would > get retested by Igenex beforehand. My first test was a year ago. Since > it's quite a drive up there, I thought this would save time & possibly > another trip if he had the results in hand at the time of my appt. So > my question is what tests to order?? > > Pam > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Yes, I know. I was already tested a year ago & my local doctor refused to sign off on it. I had to go to Madison (I'm in WI) to get my womens' internist to sign it. They called me when it came in & I went in & got it. But I just talked to the LLMD that I am going to see in September. He says not to bother retesting now. If I tested negative, who knows what that would mean since I was positive a year ago, & if I tested postive, I would just be spending money to learn what I already know. nancy berndt wrote: > > Hi Pam > I don't believe Igenex will test without your Dr. ordering it.I spent > 900.00 > on tests and they wouldn't even send me the results...only to my Dr. > > (Makayla'smom) > > On Fri, Aug 22, 2008 at 8:08 AM, Pam Norman <pam_norman@... > <mailto:pam_norman%40charter.net>> wrote: > > > Hi all > > > > I have an appt coming up with a LLMD in northern WI & thought I would > > get retested by Igenex beforehand. My first test was a year ago. Since > > it's quite a drive up there, I thought this would save time & possibly > > another trip if he had the results in hand at the time of my appt. So > > my question is what tests to order?? > > > > Pam > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2008 Report Share Posted August 24, 2008 my opinion--dont bother with retesting--Ive been retested over the 18 yrs and just ONCE was I ever slightly positive negative tests wont mean anything but it MAY mean insurance denials for tx!!! go with clinical sx and a good experienced Dr F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 don't stop at one, my daughters 3rd test came back positive -- R. Wood michellerwood@... Happiness keeps you sweet, Trials keep you strong, Sorrows Keep you Human, Failures keep you humble, Success keeps you glowing, but only GOD keeps you Going! ---- tweetyrja@... wrote: > > Has anyone had more than 1 Igenex test for Lyme? Were most of your kids diagnosed with other blood tests or in combination with Igenex? > > I'm asking because we know of someone who had 4 Igenix tests....................with the last one being positive for Lyme. The first 3 were negative. My son is about to have his first, and if it's negative, I don't think we can afford more of them. > > > I appreciate any info.! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 How do you afford more then one time? I'm waiting right now for my daughters igenex test results .... took all out Xmas money n if its negative family members will probly take her away from me.....ugggg On Mon Dec 27th, 2010 9:11 PM CST michellerwood@... wrote: >don't stop at one, my daughters 3rd test came back positive >-- > R. Wood >michellerwood@... >Happiness keeps you sweet, Trials keep you strong, Sorrows Keep you Human, Failures keep you humble, Success keeps you glowing, but only GOD keeps you Going! > >---- tweetyrja@... wrote: >> >> Has anyone had more than 1 Igenex test for Lyme? Were most of your kids diagnosed with other blood tests or in combination with Igenex? >> >> I'm asking because we know of someone who had 4 Igenix tests....................with the last one being positive for Lyme. The first 3 were negative. My son is about to have his first, and if it's negative, I don't think we can afford more of them. >> >> >> I appreciate any info.! >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 All 4 of us had IgeneX tests. My two daughters were positive -- the younger one very much so, the older one only by PCR after we saw a few telltale positive bands. My husband was positive right off. I was not positive until we had a PCR Test and found lyme dna. The thing is, there are a lot of tests that you can get done that indicate Lyme even if your body is not producing antibodies at first until, say, it has an antibiotic challenge. Please know that IgeneX has very generously given $$ to a fund to pay for kids who need tests whose families cannot afford it. I think it's through Time for Lyme, though it may be through others as well. natasha ________________________________ From: " tweetyrja@... " <tweetyrja@...> Sent: Mon, December 27, 2010 7:08:23 PM Subject: [ ] Igenex Tests Has anyone had more than 1 Igenex test for Lyme? Were most of your kids diagnosed with other blood tests or in combination with Igenex? I'm asking because we know of someone who had 4 Igenix tests....................with the last one being positive for Lyme. The first 3 were negative. My son is about to have his first, and if it's negative, I don't think we can afford more of them. I appreciate any info.! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 What test can find it in your dna? My nurse sisterinlaw said maybe they my in-laws would believe we were sick if we got a positive lyme dna test...what is that as our highly positive elsia n eviquvicle wb were not good enough for them....ugggg On Mon Dec 27th, 2010 10:08 PM CST Natasha Moiseyev wrote: >All 4 of us had IgeneX tests. My two daughters were positive -- the younger one >very much so, the older one only by PCR after we saw a few telltale positive >bands. My husband was positive right off. I was not positive until we had a >PCR Test and found lyme dna. The thing is, there are a lot of tests that you >can get done that indicate Lyme even if your body is not producing antibodies at >first until, say, it has an antibiotic challenge. > >Please know that IgeneX has very generously given $$ to a fund to pay for kids >who need tests whose families cannot afford it. I think it's through Time for >Lyme, though it may be through others as well. > >natasha > > > >________________________________ >From: " tweetyrja@... " <tweetyrja@...> > >Sent: Mon, December 27, 2010 7:08:23 PM >Subject: [ ] Igenex Tests > > > >Has anyone had more than 1 Igenex test for Lyme? Were most of your kids >diagnosed with other blood tests or in combination with Igenex? > >I'm asking because we know of someone who had 4 Igenix >tests....................with the last one being positive for Lyme. The first 3 >were negative. My son is about to have his first, and if it's negative, I don't >think we can afford more of them. > >I appreciate any info.! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 there's negative and negative. If there are any positive telltale bands then LLMDs will have you do an antibiotic challenge and then retest. Having some but not enough to test definitively positive generally means the LLMD takes a cautious approach. ________________________________ From: Diane Biel <dkbmama@...> Lyme Treatment Sent: Mon, December 27, 2010 7:57:34 PM Subject: Re: [ ] Igenex Tests How do you afford more then one time? I'm waiting right now for my daughters igenex test results .... took all out Xmas money n if its negative family members will probly take her away from me.....ugggg On Mon Dec 27th, 2010 9:11 PM CST michellerwood@... wrote: >don't stop at one, my daughters 3rd test came back positive >-- > R. Wood >michellerwood@... >Happiness keeps you sweet, Trials keep you strong, Sorrows Keep you Human, >Failures keep you humble, Success keeps you glowing, but only GOD keeps you >Going! > >---- tweetyrja@... wrote: >> >> Has anyone had more than 1 Igenex test for Lyme? Were most of your kids >>diagnosed with other blood tests or in combination with Igenex? >> >> I'm asking because we know of someone who had 4 Igenix >>tests....................with the last one being positive for Lyme. The first 3 >>were negative. My son is about to have his first, and if it's negative, I don't >>think we can afford more of them. >> >> >> I appreciate any info.! >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 Lyme can suppress the immune system and hide so effectively that you don't produce antibodies. Since the Western Blot is a test for antibodies, it would not test " positive " under those circumstances. But if you do a blood and urine test, (I think mostly urine) called PCR, it will look for actual pieces of lyme DNA in your body fluid, which you collect for 3 days I believe. That's how they found it in me. I was not showing positive, but my kids and husb had tested positive so we went for the PCR and lo and behold, they found the DNA. Natasha ________________________________ From: Diane Biel <dkbmama@...> Lyme Treatment Sent: Mon, December 27, 2010 8:18:44 PM Subject: Re: [ ] Igenex Tests What test can find it in your dna? My nurse sisterinlaw said maybe they my in-laws would believe we were sick if we got a positive lyme dna test...what is that as our highly positive elsia n eviquvicle wb were not good enough for them....ugggg On Mon Dec 27th, 2010 10:08 PM CST Natasha Moiseyev wrote: >All 4 of us had IgeneX tests. My two daughters were positive -- the younger one > >very much so, the older one only by PCR after we saw a few telltale positive >bands. My husband was positive right off. I was not positive until we had a >PCR Test and found lyme dna. The thing is, there are a lot of tests that you >can get done that indicate Lyme even if your body is not producing antibodies at > >first until, say, it has an antibiotic challenge. > >Please know that IgeneX has very generously given $$ to a fund to pay for kids >who need tests whose families cannot afford it. I think it's through Time for >Lyme, though it may be through others as well. > >natasha > > > >________________________________ >From: " tweetyrja@... " <tweetyrja@...> > >Sent: Mon, December 27, 2010 7:08:23 PM >Subject: [ ] Igenex Tests > > > >Has anyone had more than 1 Igenex test for Lyme? Were most of your kids >diagnosed with other blood tests or in combination with Igenex? > >I'm asking because we know of someone who had 4 Igenix >tests....................with the last one being positive for Lyme. The first 3 > >were negative. My son is about to have his first, and if it's negative, I don't > >think we can afford more of them. > >I appreciate any info.! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 I'm in the same boat. And has anyone heard of the CD-57 test? I think that's a new test too for Lyme. Re: [ ] Igenex Tests How do you afford more then one time? I'm waiting right now for my daughters igenex test results .... took all out Xmas money n if its negative family members will probly take her away from me.....ugggg On Mon Dec 27th, 2010 9:11 PM CST michellerwood@... wrote: >don't stop at one, my daughters 3rd test came back positive >-- > R. Wood >michellerwood@... >Happiness keeps you sweet, Trials keep you strong, Sorrows Keep you Human, Failures keep you humble, Success keeps you glowing, but only GOD keeps you Going! > >---- tweetyrja@... wrote: >> >> Has anyone had more than 1 Igenex test for Lyme? Were most of your kids diagnosed with other blood tests or in combination with Igenex? >> >> I'm asking because we know of someone who had 4 Igenix tests....................with the last one being positive for Lyme. The first 3 were negative. My son is about to have his first, and if it's negative, I don't think we can afford more of them. >> >> >> I appreciate any info.! >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 The CD57 is like some other tests -- it tests for predictable symptoms of Lyme, specifically its effect on some immune cells called CD57s-- here's an explanation I found: This is how it works: Chronic Lyme infections are known to suppress the immune system. The Lyme spirochete can affect all major cell types of the immune system, but it most clearly can impact a specific subset of the natural killer cells. This is called the CD-57 subset. Just as in HIV infection, which suppresses T-cell counts, Lyme suppresses Natural killer cell count such as CD57. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active the infection is, in Lyme we can use the CD-57 count to indicate how active the Lyme infection is. When Lyme is active, the CD-57 count is suppressed. We currently are having our tests run by LabCorp because published research on this test was based on their methods. At this lab, the expected range for the CD 57 count is above 60. However, in the chronic Lyme patient, CD-57 counts are usually well below 60 and may be at risk with levels of 60-100. It doesn't actually test for Lyme per se, just for something that is a great symptomatic indicator of Lyme. ________________________________ From: " tweetyrja@... " <tweetyrja@...> Sent: Mon, December 27, 2010 8:47:17 PM Subject: Re: [ ] Igenex Tests I'm in the same boat. And has anyone heard of the CD-57 test? I think that's a new test too for Lyme. Re: [ ] Igenex Tests How do you afford more then one time? I'm waiting right now for my daughters igenex test results .... took all out Xmas money n if its negative family members will probly take her away from me.....ugggg On Mon Dec 27th, 2010 9:11 PM CST michellerwood@... wrote: >don't stop at one, my daughters 3rd test came back positive >-- > R. Wood >michellerwood@... >Happiness keeps you sweet, Trials keep you strong, Sorrows Keep you Human, >Failures keep you humble, Success keeps you glowing, but only GOD keeps you >Going! > >---- tweetyrja@... wrote: >> >> Has anyone had more than 1 Igenex test for Lyme? Were most of your kids >>diagnosed with other blood tests or in combination with Igenex? >> >> I'm asking because we know of someone who had 4 Igenix >>tests....................with the last one being positive for Lyme. The first 3 >>were negative. My son is about to have his first, and if it's negative, I don't >>think we can afford more of them. >> >> >> I appreciate any info.! >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 If they did not believe the highly positive ELISA (not super accurate -- lots of false negatives) and the equivocal WB (I'm imagining they wanted a deifinitive result), the PCR (finding actual pieces of lyme bacteria) test might convince them. Or maybe no matter what proof you get they will still doubt you. Sigh. I have several friends whose families and friends think they are crazy hypochondriacs no matter how much proof they come up with. Or they have pediatricians who accuse them of Munchausen by Proxy. As if these parents who keep looking for answers to their children's health issues are trying to make them sick or are convinced they are sick because the parents have psychological problems. Myself, I had a pediatrician accuse me of " dangerous experimentation " on my kids when we put them on massive antibiotics, PICC lines, etc. I do know someone whose husband had the children removed from her custody and she has not seen the kids (and they have not been treated) for several years. It breaks my heart. ________________________________ From: Diane Biel <dkbmama@...> Lyme Treatment Sent: Mon, December 27, 2010 8:18:44 PM Subject: Re: [ ] Igenex Tests What test can find it in your dna? My nurse sisterinlaw said maybe they my in-laws would believe we were sick if we got a positive lyme dna test...what is that as our highly positive elsia n eviquvicle wb were not good enough for them....ugggg On Mon Dec 27th, 2010 10:08 PM CST Natasha Moiseyev wrote: >All 4 of us had IgeneX tests. My two daughters were positive -- the younger one > >very much so, the older one only by PCR after we saw a few telltale positive >bands. My husband was positive right off. I was not positive until we had a >PCR Test and found lyme dna. The thing is, there are a lot of tests that you >can get done that indicate Lyme even if your body is not producing antibodies at > >first until, say, it has an antibiotic challenge. > >Please know that IgeneX has very generously given $$ to a fund to pay for kids >who need tests whose families cannot afford it. I think it's through Time for >Lyme, though it may be through others as well. > >natasha > > > >________________________________ >From: " tweetyrja@... " <tweetyrja@...> > >Sent: Mon, December 27, 2010 7:08:23 PM >Subject: [ ] Igenex Tests > > > >Has anyone had more than 1 Igenex test for Lyme? Were most of your kids >diagnosed with other blood tests or in combination with Igenex? > >I'm asking because we know of someone who had 4 Igenix >tests....................with the last one being positive for Lyme. The first 3 > >were negative. My son is about to have his first, and if it's negative, I don't > >think we can afford more of them. > >I appreciate any info.! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 From my experiences and family's... Make sure you do it correctly the first time and maybe you won't need more. Make sure you take the proper antibiotics before the test. I think for 5 to 7 days, your doctor should be able to tell you. Doxycycline works great for the test. It really stirs up the spirochetes and makes them release from free radicals they attach themselves to that can then hide from the test. Definitely get the urine and blood test done at the same time. When I had mine done and it was positive, they then did a reverse western blot to confirm the results. My dad was equivocal a couple times before he was positive because he didn't take the antibiotics first. It's very important. And with me it made my arms itch and I think my son too. In most opinions, there is no such thing as a false positive. If it's there, it's there. There's different viewpoints on equivocal but if your really negative you shouldn't be coming out equivocal. Good luck. Suzanne On Dec 27, 2010, at 9:08 PM, tweetyrja@... wrote: > > Has anyone had more than 1 Igenex test for Lyme? Were most of your > kids diagnosed with other blood tests or in combination with Igenex? > > I'm asking because we know of someone who had 4 Igenix > tests....................with the last one being positive for Lyme. > The first 3 were negative. My son is about to have his first, and if > it's negative, I don't think we can afford more of them. > > I appreciate any info.! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 We only had one round of igenex testing. Our 17 year old has been sick for 18 months. Initial CDC test was negative but igenex test was positive. Hope you get some answers. I know this is a tough road to travel. Sent from my iPad On Dec 27, 2010, at 7:08 PM, tweetyrja@... wrote: > > Has anyone had more than 1 Igenex test for Lyme? Were most of your kids diagnosed with other blood tests or in combination with Igenex? > > I'm asking because we know of someone who had 4 Igenix tests....................with the last one being positive for Lyme. The first 3 were negative. My son is about to have his first, and if it's negative, I don't think we can afford more of them. > > I appreciate any info.! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 Financial help for Lyme testing: http://www.lymetap.org/ From the website: The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program offered by Rotary Club of Ferndale Foundation in coordination with Humboldt Lyme Awareness Group to provide reimbursement assistance of initial Lyme-related lab tests to patients who demonstrate true financial need. To apply, send a completed application along with requested documentation (noted in the application). We prefer all application materials be submitted via fax. Other options for submission include by mail or email to lymetap@.... If approved, you may be reimbursed for up to 75% of your out-of-pocket costs of testing from a qualified CLIA/Medicare approved laboratory of your choice. Funds are limited & are available on a first-come, first-served basis. Children under 18 years of age are given priority. The intention of this program is to help as many patients in need as possible. It is not intended to cover insurance deductibles or to cover patients not truly in financial need. > > > Has anyone had more than 1 Igenex test for Lyme? Were most of your kids diagnosed with other blood tests or in combination with Igenex? > > I'm asking because we know of someone who had 4 Igenix tests....................with the last one being positive for Lyme. The first 3 were negative. My son is about to have his first, and if it's negative, I don't think we can afford more of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 So why hasn't anyone (LLMD, Ped., IDSA, other alternative MDs) recommended the PCR urine test for my daughter? I've had her tested with the regular WB a couple of times (band 41 positive) and the CD57 and the C4a (came out fine) and that's all they've recommended as that is all that is covered by insurance...is the PCR simple and covered? Is it considered definitive? If so I wonder why nobody recommended it? > > > Has anyone had more than 1 Igenex test for Lyme? Were most of your kids diagnosed with other blood tests or in combination with Igenex? > > I'm asking because we know of someone who had 4 Igenix tests....................with the last one being positive for Lyme. The first 3 were negative. My son is about to have his first, and if it's negative, I don't think we can afford more of them. > > > I appreciate any info.! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 While some testing is better than others, there is no definitive test for Lyme. Lyme is a clinical dx, the testing can confirm the clinical dx, however technically you can be considered positive by clinical alone (just very difficult to get most people to believe it without testing, including most dr's). Charlotte [ ] Re: Igenex Tests So why hasn't anyone (LLMD, Ped., IDSA, other alternative MDs) recommended the PCR urine test for my daughter? I've had her tested with the regular WB a couple of times (band 41 positive) and the CD57 and the C4a (came out fine) and that's all they've recommended as that is all that is covered by insurance...is the PCR simple and covered? Is it considered definitive? If so I wonder why nobody recommended it? > > > Has anyone had more than 1 Igenex test for Lyme? Were most of your kids diagnosed with other blood tests or in combination with Igenex? > > I'm asking because we know of someone who had 4 Igenix tests....................with the last one being positive for Lyme. The first 3 were negative. My son is about to have his first, and if it's negative, I don't think we can afford more of them. > > > I appreciate any info.! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 My daughters PCR urine test came back negative. We did a 3 day urine catch, on days 2, 4, and 6 of being on antibiotics. I never thought to ask why it came back negative, or why we needed both. Her blood tests done after 16 days on antibiotics came back positive and thankfully so, i don't think I would have decided to continue with the antibiotics with a negative PCR test result. Our doctor who also treats my daughter never recommended I have a PCR? At that point, I wasn't in a questioning state, but now that you mention it, I'm interested. She recommended Igenex during our very first visit. Now that she is completely aware of our financial situation, she has suggested Labcorp for my husband, since our insurance covers it. This took 4 months of us seeing her to make this suggestion when it was clear that we could not afford any further testing with Igenex, and possibly will have to put off seeing her again until our financial status changes due to deductibles and copayments that kick in all over again starting in January. She has complete faith in Labcorp and other various labs for everything else. From: spamneggs@... Date: Tue, 28 Dec 2010 19:26:33 +0000 Subject: [ ] Re: Igenex Tests So why hasn't anyone (LLMD, Ped., IDSA, other alternative MDs) recommended the PCR urine test for my daughter? I've had her tested with the regular WB a couple of times (band 41 positive) and the CD57 and the C4a (came out fine) and that's all they've recommended as that is all that is covered by insurance...is the PCR simple and covered? Is it considered definitive? If so I wonder why nobody recommended it? > > > Has anyone had more than 1 Igenex test for Lyme? Were most of your kids diagnosed with other blood tests or in combination with Igenex? > > I'm asking because we know of someone who had 4 Igenix tests....................with the last one being positive for Lyme. The first 3 were negative. My son is about to have his first, and if it's negative, I don't think we can afford more of them. > > > I appreciate any info.! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 ________________________________ From: Guillen <lovingmama@...> Lyme Treatment Sent: Tue, December 28, 2010 12:26:18 PM Subject: RE: [ ] Re: Igenex Tests My daughters PCR urine test came back negative. We did a 3 day urine catch, on days 2, 4, and 6 of being on antibiotics. I never thought to ask why it came back negative, or why we needed both. Her blood tests done after 16 days on antibiotics came back positive and thankfully so, i don't think I would have decided to continue with the antibiotics with a negative PCR test result. Our doctor who also treats my daughter never recommended I have a PCR? At that point, I wasn't in a questioning state, but now that you mention it, I'm interested. She recommended Igenex during our very first visit. Now that she is completely aware of our financial situation, she has suggested Labcorp for my husband, since our insurance covers it. This took 4 months of us seeing her to make this suggestion when it was clear that we could not afford any further testing with Igenex, and possibly will have to put off seeing her again until our financial status changes due to deductibles and copayments that kick in all over again starting in January. She has complete faith in Labcorp and other various labs for everything else. From: spamneggs@... Date: Tue, 28 Dec 2010 19:26:33 +0000 Subject: [ ] Re: Igenex Tests So why hasn't anyone (LLMD, Ped., IDSA, other alternative MDs) recommended the PCR urine test for my daughter? I've had her tested with the regular WB a couple of times (band 41 positive) and the CD57 and the C4a (came out fine) and that's all they've recommended as that is all that is covered by insurance...is the PCR simple and covered? Is it considered definitive? If so I wonder why nobody recommended it? > > > Has anyone had more than 1 Igenex test for Lyme? Were most of your kids >diagnosed with other blood tests or in combination with Igenex? > > I'm asking because we know of someone who had 4 Igenix >tests....................with the last one being positive for Lyme. The first 3 >were negative. My son is about to have his first, and if it's negative, I don't >think we can afford more of them. > > > I appreciate any info.! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 My daughters llmd wouldn't give her abx before her test....but...a different doc did give her doxy for a sinus infection for 10 days and she was off of that a little over a week or so before her test.......hope that helped......as it sure made her sicker!! I even asked the llmd is he should put her on abx before the blood test....he said no.....and I also heard its good to do in the beginning of your period......now sure why...but she had that also........twisting my fingers  Sure CANT do it again. Diane ________________________________ From: Suzanne <suzlwilliams@...> Sent: Tue, December 28, 2010 12:17:09 AM Subject: Re: [ ] Igenex Tests From my experiences and family's... Make sure you do it correctly the first time and maybe you won't need more. Make sure you take the proper antibiotics before the test. I think for 5 to 7 days, your doctor should be able to tell you. Doxycycline works great for the test. It really stirs up the spirochetes and makes them release from free radicals they attach themselves to that can then hide from the test. Definitely get the urine and blood test done at the same time. When I had mine done and it was positive, they then did a reverse western blot to confirm the results. My dad was equivocal a couple times before he was positive because he didn't take the antibiotics first. It's very important. And with me it made my arms itch and I think my son too. In most opinions, there is no such thing as a false positive. If it's there, it's there. There's different viewpoints on equivocal but if your really negative you shouldn't be coming out equivocal. Good luck. Suzanne On Dec 27, 2010, at 9:08 PM, tweetyrja@... wrote: > > Has anyone had more than 1 Igenex test for Lyme? Were most of your > kids diagnosed with other blood tests or in combination with Igenex? > > I'm asking because we know of someone who had 4 Igenix > tests....................with the last one being positive for Lyme. > The first 3 were negative. My son is about to have his first, and if > it's negative, I don't think we can afford more of them. > > I appreciate any info.! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2010 Report Share Posted December 29, 2010 I know one person who had several negatives and was not positive until quite a while on antibiotics(she retested then out of curiosity). I know what you mean about the expense. Maybe your dr will take that into consideration. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 I don't understand that. I'm sure things have changed since my test 9 years ago but the way it was explained to me was that taking a Lyme's test (from IGENEX) is like throwing a handful of cotton balls in a swimming pool then closing your eyes and try to scoop one out with a cup. And taking antibiotics before the test releases more spirochetes (cotton balls) from free radicals they cling to so you can potentially " scoop up more in the cup. " I believe this because I saw several tests with family members be equivocal until the antibiotics were taken just prior to testing that would then result in a positive test. A different doctor explained that when the spirochetes are threatened by the treatment/antibiotics it makes them more active and they then try to reproduce as fast as they can because they are dying off. Like a defense mode and that the theory of it only taking one month to cure, like the Infectious Disease doctors treat it, is just making the condition worse. That is why you don't want to stop treatment until a couple months after your symptoms are all gone. For me that was about 8 to 10 months. Everyone will be different. Changing treatment is different. The other interesting tidbit not everyone knows is that he said, they can reproduce every 12 hours! So some people take their meds twice a day instead of once for that reason. As if it's going to kill them off faster. I don't know if that's true since your flooding your blood with antibiotics to the point they couldn't live through it or reproduce anyway. These are all theories and many doctors have their own. Unfortunately, it's not a disease that is easily understood even by the believers. Some doctors will go ahead with treatment for an equivocal test result if you are also accompanied with other Lyme symptoms to make them believe you do have it. There used to not be a blood test at all and a symptomatic diagnosis and ruling out everything else was the only way to determine a diagnosis. It actually might be the better route to go if you really believe you have it because if your insurance company has a Lymes diagnosis on you they can " black list " you so that you can't get individual insurance in the future. Sounds illegal but it happened to my sister and it was purely because they asked her why she was taking Actigall. She talked the girl into telling her the truth. She own's her own business and no company will give her health insurance with no other health issues. Normal insurance will cover antibiotics in pill form anyway, with no questions. But for picc lines they may want a diagnosis. So much for health privacy. Take care, Suzanne On Dec 28, 2010, at 3:56 PM, Diane Biel wrote: > My daughters llmd wouldn't give her abx before her test....but...a > different doc > did give her doxy for a sinus infection for 10 days and she was off > of that a > little over a week or so before her test.......hope that > helped......as it sure > made her sicker!! > I even asked the llmd is he should put her on abx before the blood > test....he > said no.....and I also heard its good to do in the beginning of your > period......now sure why...but she had that also........twisting my > fingers > Sure CANT do it again. > Diane > > ________________________________ > From: Suzanne <suzlwilliams@...> > > Sent: Tue, December 28, 2010 12:17:09 AM > Subject: Re: [ ] Igenex Tests > > From my experiences and family's... Make sure you do it correctly > the first time and maybe you won't need more. Make sure you take the > proper antibiotics before the test. I think for 5 to 7 days, your > doctor should be able to tell you. Doxycycline works great for the > test. It really stirs up the spirochetes and makes them release from > free radicals they attach themselves to that can then hide from the > test. Definitely get the urine and blood test done at the same time. > When I had mine done and it was positive, they then did a reverse > western blot to confirm the results. My dad was equivocal a couple > times before he was positive because he didn't take the antibiotics > first. It's very important. And with me it made my arms itch and I > think my son too. In most opinions, there is no such thing as a false > positive. If it's there, it's there. There's different viewpoints > on equivocal but if your really negative you shouldn't be coming out > equivocal. Good luck. > Suzanne > > On Dec 27, 2010, at 9:08 PM, tweetyrja@... wrote: > > > > > Has anyone had more than 1 Igenex test for Lyme? Were most of your > > kids diagnosed with other blood tests or in combination with Igenex? > > > > I'm asking because we know of someone who had 4 Igenix > > tests....................with the last one being positive for Lyme. > > The first 3 were negative. My son is about to have his first, and if > > it's negative, I don't think we can afford more of them. > > > > I appreciate any info.! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Yep, I took 10 days or so of doxy and got a CDC positive test at QUEST...and later took an Igenex WB after taking abx and it was indeterminate so amazingly I have the Quest result ...I think about 30 % seroconvert after a little doxy but all here in FL are getting pos results from Quest and Labcorp. Regards, Dolores > > > > > Has anyone had more than 1 Igenex test for Lyme? Were most of your > > kids diagnosed with other blood tests or in combination with Igenex? > > > > I'm asking because we know of someone who had 4 Igenix > > tests....................with the last one being positive for Lyme. > > The first 3 were negative. My son is about to have his first, and if > > it's negative, I don't think we can afford more of them. > > > > I appreciate any info.! > > > > Quote Link to comment Share on other sites More sharing options...
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