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igenex results are here

Hi all
Just rung the Dr surgery who ordered my bloods for igenex and my results are in!!!!
I can't get them though until tomorrow as the Dr is not there.
I am really nervous now, and have asked for a copy to be emailed to me also for my own records.
I know I am jumping the gun  a bit but if they are negative what do I do then??????
Get a repeat, they cost me $1600.
I still have to get my daughter done yet, but was waiting to see what my results come back as.
My cd57 test here in Australia come back at 39, and my G.P. said that was chronic and that he expected the igenex one to come back even lower.
Is this test very reliable at igenex????  Is this a test solely for lyme, or is it just a test that could mean someone has lyme?????
Thanks for all your help so far!!!
Melissa
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Avatar universal
Labcorp CD57 test results verses Igentics CD57 , are they both compadiable for the CD57 Results or should we just have the test done Igentics , I had my CD57 done by Labcorp are they as effective
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1211030 tn?1381137342
www.lymediseaseresource.com/Syphilis.html  
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Avatar universal
There are other docs you can see.  Find an ILADS member as a first step, but they are not all created equal either.  The medical community is in disarray, so there is more responsibility on the patient to make treatment choices and determinations.  
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Avatar universal
Yes I agree , its a personal choice, but I feel that we also need to be opened minded and also be informative of what are options are and choices and who to believe and who not to belive , more so what to believe rather then who, bing d/x and having a false positive can cause serious reprecussions to ones well being , if they are telling people they are positive and then later doning another test to say oops sorry we were wrong it was a false positive, they are gambling with ones life and decissions, people go to Igentixs as they are looking for answers and are referred by others , but do that mean they are bullet proof , NO they are not ,but state their tests are 95% accurate , sorry I am just sop frustrated with this entire Lyme therory , nothing personal, just fed up with the Medical community especially here in Canada where theirs no acknowledgemnet abt Lymes and we have to go to the States to get treatment, I seen a LLMD in Buffalo , and all she wants me to do is more tests with a Naturalpathic Dr to have tests done for Detox toxicity , chemical sensativity test , neurotransmitter tests and was told by her if I DONT do these test then she WILL NOT treat me , the tests costs $1500.00 , I am like I just want to be treated for Lymes, theres no other LLMD close by to  me or even futur away that can see me until NEXT year!!!! I am so angry and so scared the later I wait the harder its gng to be to trea if indeed it is Lyme .
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Avatar universal
To my understanding, the IGeneX testing is proprietary to IGeneX Labs:  they invented it and they own it. It's a business, not a charity.  If you don't want to deal with them, then don't -- they seem to have been very generous with their time and expertise already.  

You have to decide for yourself whether to pursue Lyme as a diagnosis.  If you don't believe you have it, then get another diagnosis from another doctor and pursue treatment for that.  It's a personal decision.  Best wishes to you --
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Avatar universal
Wow syphliss disease!!!!! NOPE there's no way I have thAt ,my hubby and I been married 24 years and faithfully married, there's NO way I have any of those symptoms or lesions ,I am still not 100% convinced that Igentixs testing is bullet proof , as I asked why are other Labs , like Labcorp etc... Are no better then Igentics if Igentics seems to have the magic answers then why isn't Labcorp following the exact procedure ? If Igentics seem to be the relable D/X , to me it's all about $$$$$ , I was suggested by Dr Harris at Igentics to do another testing to see if band 31 is a false positive , my money is on saying the answer is NOPE , and it was suggested because they wanted more money!,,I would like to know why we spend $200 on a western blot test for results and then when were still not sure they request us to pay out MORE money because they have. Better test , if they are so sure in their results then why do they other options for the vulnerable to pay out of pocket to get another test done , to me it's because their not sure themselves and they just want more money.That's justly though
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Avatar universal
Some people can have a Lyme infection but their immune system is strong enough to keep it in check.  That happened in my family.  I was very ill with what turned out to be Lyme and babesia, and under protest another family member was tested, saying "I feel fine!" but the test came back ... positive for Lyme and babesia.  

After treatment, we both felt better, and the person who 'felt fine' now realized that there was illness there after all, just mistaken for overwork and playing too hard.

That matches the situation you describe above.

Are you familiar with syphilis?  You might want to read up on it.  It is caused by a spiral-shaped bacterium similar to the one that causes Lyme.  A syphilis infection can go underground in your body for years and years, doing its dirty work with hardly any notice at all, and then BAM ... syphilitic dementia and all sorts of ugly things.  Personally, I'd rather be treated.

IGeneX has a newer and different kind of test from the standard Western blot and ELISA.  The parts of the medical community that don't think Lyme is a big deal think that the Wblot/ELISA combo are just fine and see no reason to move to a different kind of test, which IGeneX' PCR test is.  

It's called 'progress.'  We do not have all the answers, partly because nature keeps changing and inventing new diseases ... like AIDS.  Medicine takes time to understand and gear up to diagnose new and emerging diseases, and Lyme is one of those.  

You don't have to use IGeneX or find a doc who uses IGeneX, and you don't have to get treated or do anything at all.  It's up to you.  The medical community is still sorting itself out on Lyme.  That's just the state of the art at the moment.  
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Avatar universal
I would like to chime on this too, I have a friend that was tested POSITIVE from Igentics , got tested because his twin brother had Lyme and he wanted his mom and brother to get tested to make sure they were not gng through what he was, anyways the one brother was a definate positive for Lymes as he has alot of Lyme symptoms, but his mom and brother HAve LITERALLY NO symptoms at all, that test was done by IGENTIXS , so from what I heard and read that if you are tested positive then you have active Lyme, that test was done ofr them 5 years ago , and still dont have any symptoms at all, so I would like to understand why their tests came back positive , what logic is it to that, and their bands are almost identical to mine. If Band 31 and Band 41 are so obvious a Lyme marker and I gentixs are the best why isnt other Labs following the same procedure if their testing is so much better? I am not debating but only stating the facts , and need to understand why Igentics are so much better then anyone else and why other Labs dont follow the same protocol. Just asking
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Avatar universal
Good for you!! That is a great attitude. And you have done great to survive it for so long. I am so glad you are getting treatment and looking forward to feeling better.

It always strikes me as significant when I read about an Aussie with similar symptoms or disease progression as myself. It is like a validation of my own experience. I know I haven't been making anything up or exaggerating my symptoms, but I still carry that feeling of not being fully believed by my mom and some doctors.  

My internist while I was hospitalized used the phrase "Too unlikely!" at my argument that I had Lyme and possibly Babesia. (Turns out it was Lyme and Bart.) My presentation is definitely different than most North Americans with Lyme. When I see similarities with Aussie Lyme, it is a reminder that I don't have some highly unusual Lyme story. I actually have a fairly typical Lyme story..for Australian Lyme.  Even my IGeneX WB results are consistent with the twenty-something other results WB results published by Dr. Peter Mayne.

There is a strange relief in not feeling like I am the only one.
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Avatar universal
Good for you, and welcome to the battlefield!  errr, I mean ... welcome to MedHelp Lyme.  :)

Thirty years you've been ill!  I always heard Aussies were a tough lot, and you're proof.

Let us know how we can help, and stay in touch with your progress -- ROAR!
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Avatar universal
Well said Jackie.  Having to explain, justify and even teach the medical profession of your illness is frustrating and draining to say the least.   Gee, I wonder why so many Lymie's would prefer to lock themselves away at home.  Still then the comeback "Your depressed" .......well Duh!  Perhaps if we were treated as a sick person who deserves a diagnosis and treatment it may actually help toward healing in the treatment process.  I am only just finally being diagnosed and treated 30 years after my initial tick bite....20 years of mono like flares (just the same as you explain Ricobord) and a further 10 years of Chronic symptoms.

I have to say that you guys are so encouraging providing a great place to vent, rant, learn and share.  I read through every ones journeys and feel so encouraged.  My focus has changed and my eyes have lifted up out of my circumstances.  I look back on the past 30 years now and think "I have done so well surviving this awful disease" instead of the "I'm such a failure going round and round the same mountain".  Well, I am going round this mountain no more. I am going up and over it and I thank you all that we are all here to help each other in that process.
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Avatar universal
right on!
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Avatar universal
I suspect there are many, many of us out here, diagnosed and undiagnosed, who have been bitten and carry the infection, but our immune systems keep the symptoms at a low roar, until another illness **or a reinfection with Lyme and one or more co-infections** overwhelms the immune system.

Docs engage in such linear and singular thinking, and it 'infects' (excuse the word) the entire approach to Lyme+.  And given that Lyme is everywhere and that many of us never see a tick or have a rash, the position that there is ONE bite with ONE disease resulting may make for pretty articles in medical journals, but a good epidemiologist should scoff at that model of tickborne diseases.

Lyme seems to persist in the 'scientific model' stage rather than address it as an illness that we have multiple and repeated unknown occasions to be infected over the years.  How do we get docs to go beyond that?  I am truly puzzled at the willful ignorance in the medical community on this topic.  

If the attention and time spent on the annual flu strains were equalled by attention and time spent on Lyme+, think how much better we would be treated when we drag our sorry behinds into a doc's office and get sneered at and handed tranquilizers.  Sigh.

Instead we the patients end up obsessing over when we might have gotten The Tick Bite and whether we got The Rash.  I know of no other illness that requires patients to jump through so many hoops to receive consideration, diagnosis, treatment, and respect.  

>end rant<
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Avatar universal
Some doctors are convinced it is sexually transmitted. Other doctors are convinced it's not, and that couples with Lyme spend a lot of time together and were probably exposed in the same area. Spirochetes have been found in sperm.  But no one has shown if they are viable and capable of reproducing and starting an infection.   We just don't know yet.

You could have had it for quite a while. I had it for nearly 5 years before my chronic symptoms started. I would have bouts of severe fatigue and headaches that just shut me down. It felt exactly like mono, which I'd had 5 years before these episodes started. I thought I was having mono relapses. It would happen every 6-11 months and would last for 1-3 weeks.  I was usually bedridden for at least 2-3 days and felt like I'd been run over by a truck for several days or a couple weeks until I pulled out of it. Eventually, I realized I had less energy than my peers and I was less social and less motivated to do anything. I wondered why I seemed to be aging faster than normal. It will be interesting to see how I feel once I have kicked this beast. It's been nearly 7 years since I was actually well.

I read a summary of an ILADS doctor's talk to a a group of patients.  She doesn't believe that there are any false positives with Lyme specific bands.  She recommended treating an asymptomatic patient without a history of Lyme Disease who shows Lyme specific bands, because it indicates that the immune system is fighting off Lyme. Eventually, the immune system will decline with age or be compromised somehow (severe stress, surgery, illness, etc.) and then a Lyme infection will seem to come out of nowhere.  She said it is easier to kill when the immune system has it under control than it is later, when the infection is full blown.

I wondered what asymptomatic person would get a Western Blot?  It's hard enough for people WITH symptoms to get one.  I concluded that she was referring to family or household members of Lyme patients who could also have been exposed. She could also be referring to people who remember a bulls eye rash in the past, but didn't get sick.
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Avatar universal
one more thought on this old thread.. is it sexually transmitted?

my husband had lyme last year and just as he was getting better i started getting bad..?
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Avatar universal
this is an interesting thread..
i was on HIV meds and undetectable for over 10 years. my lyme symptoms were slight but annoying. did not think i had lyme...
i thought it was the meds..
so i went off meds and waited a few months to start a new coctail...and my viral load, immune systm dropped just a little.. a little, and bam!! lyme symptoms reared it head sooo bad...

i think my immune system was really strong and fought it .. then it couldn't anymore..
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Avatar universal
There's the peril of long series of comments ... Navyguitar's post is from over a year ago, and I don't recall that he's been around here since then.  Not to worry.
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Avatar universal
In regard to your comment about me being probably the first person in Australia to have lyme, I'm sorry, that is so incorrect.
If you are on facebook and go onto the aussie lyme sites on there, you will see and find that  there is hundreds of people with it, and many who I have spoken to are responding to treatment.
I had symptons for over 5 years 24/7 particulary in my head, vertigo, eye dizziness and a feeling of my brain bobbing in water, these were 24/7
I could hardly talk and walk, I would muddle up my words and just sit and stare all day.
Three weeks into my meds for lyme I woke one morning and my bobbing brain sensation was gone, I am now back out socializing, and am studying at university, I'm full of energy and am almost sympton free after being on meds.
My daughter has identical symptons to me, and has tested very positive for lyme via igenex.
There are many aussies with lyme on lyme sites, I am not the only one, so your comment there was wrong.
Hopefully they will recognize lyme here soon, as the more people with it I speak to the more our symptons are identical.
If you don't believe in lyme can I ask you why the hell are you on this forum for!!!!
I am sorry to be rude but if you don't believe in it, then bugger off from this site, I have been to hell and back with my symptons, I am doing better now and don't need your negativity.
As for everyone testing positive for lyme through igenex that is crap too!!!
Many on the lyme site here have got a negative for it.
I know of a family just weeks ago with symptons who all got a negative, there are 5 in the family..
If I don't have lyme, and had symptons 24/7 for over 5 years, in which are now responding to meds, than please let me know what I do have????
I am almost back to normal.
A few Dr's have even told me no way would the meds take away ms if that is what I had.
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Avatar universal
Hi
Yes I was worried about ms but have even been to a few Drs who have all said that no way would the antibiotics take away symptons that I have had 24/7 for over 5 years.
Also my daughter was 8 when she experienced her first lot symptons, and she has tested very positive for lyme, she was both igenex positive as well as CDC positive.
We also both tested positive for bartonella on the PCR and I was told my 2 lyme Drs that you do not get a false positive for that, also I think our western blots were both positive.
Are you in Australia???
If so, I will give u my email, please email me and we can discuss anything regarding the lyme there if you would like.
I can also put you in contact with the lyme society lady who helped me find GP's and answers all my questions etc.
I grew up in Queensland and lived with bush right behind our house.
We used to play in the bush always and build cubby houses etc and walk through the bush to get to school.
Email me, I would love to have a chat with you!!!
Email is ***@****
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Avatar universal
Welcome -- sorry to hear about what your family is going through.

You might post a new message of your own referencing Australia (something like "Lyme in Queensland, Australia--?" that would catch the eye of some of our posters.  I think we have at least a couple of people here who are somewhat familiar with the situation there and might have some comments and suggestions for you.

You could copy and paste most of your message to Melissa as a new message --

Best wishes --
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Avatar universal
Hi Melissa!  I know its a while since you first posted here, reading through this has scared me just a tad.  Well here is another 40 year old Aussie female ready to throw a cat in amongst the pigeons by saying I too am on the diagnosis/treatment warpath with Lyme in Australia.  After suffering for many, many years I have only just gathered enough courage to pursue a diagnosis, mainly for reasons you have already mentioned being passed from one medical professional to another.  However, with 4 children and a husband all suffering with symptoms from it and it's co-infections the time has come for me to un-bury my head from the sand and press on into this.  I found a good Lyme Dr in Qld and am travelling across 2 states to see him.  Would love to know where your childhood holiday spot was.  We grew up on the Sth Coast of NSW when we were all bitten by ticks.  Was also wondering if any of your children have suffered from any learning difficulties with this?
Bless Ya, Robyn.
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Avatar universal

Please stop replying to my responses. You are even attacking my genuine apology. When I stated no medical doctors post on this forum, I was referring to the Lyme forum only. Almost all the other forums on medhelp have doctors replying. They would get attacked in this forum. Where are all the LLMD's that are so willing to help?

I can't believe you think the information provided here by others is unbiased. Lol
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Avatar universal
You just don't give up, do you?  Even your 'apologies' are insults.

You make the most egregious misstatements and then blame us for your comments.

You say "I am assumign that this particular board only relies on anecdotal evidence."  Wrong.

"This is very surprising to me, as this is a medical help board with real medical professionals."  Wrong.  No one here has ever identified him/herself as medically trained, and quite the contrary, there are repeated statements that we are NOT medically trained.

"I always wondered why medical professionals never post in the Lyme forum."  Okay.  And then your conclusion is:  "Their views, like mine, will be met with repeated attacks from board members."  Persecution complex?

"I was genuinely trying to help people like Melissa and Carrie.  The[y] still possess rational and logical mind sets regarding Lyme disease."  ... with the intended insult that the rest of us are irrational and illogical.  What a guy.

"They have not become overwhelmed by all of the biased information available."  Prove it is biased.  You have not done so.  

Do you know what an 'ad hominem' attack is?  It is when you attack the messenger instead of the message.  It's soooo much easier to beat up on people's credibility than to refute the facts.  

Your "apology" is simply a veiled means to deliver further obnoxious commentary.  Stop.  Just stop.
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Avatar universal
I apologize to the forum and Meilena for making any comments that show dissension to Lyme proponents. I think it is unfair for people to only receive highly biased information. I could not post my dissension on other Lyme boards. This is because the views of the majority of medical professionals and the CDC are not considered reliable to Lyme boards. Although this is disturbing to me, I will no longer try to convey proven scientific evidence or mainstream medical information. I am assuming that this particular board only relies on anecdotal evidence. This is very surprising to me, as this is a medical help board with real medical professionals.

I always wondered why medical professionals never post in the Lyme forum. Their views, like mine, will be met with repeated attacks from board members. I was genuinely trying to help people like Melissa and Carrie. The still possess rational and logical mind sets regarding Lyme disease. They have not become overwhelmed by all of the biased information available.
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