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Velentijin - MS/ME are certifiable recognized illnesses across the medical fraternity.
Lyme is not.
Lyme is not.
Igenex Full Results came in - No Help from them (borderline scam?)
- Thread starter Matthewa100
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sarah darwins - I was unaware (naive) that the results would not be a real diagnosis like all the other blood work I have had in my life.
sarah darwins
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Fair enough, although few blood tests result directly in a diagnosis of anything. Most lab tests require interpretation and some interpretations are much easier than others. Any chronic illness or ongoing or reactivating infection tends to be difficult.
Not sure what you mean with your comment to Valentijn (#21) about lyme. Lyme is most certainly a recognised illness throughout the medical literature. There is controversy in the area of reactivation and ongoing infection, and in the question of the significance of damage to the immune and other systems done by an initial infection. But these are arguments about the mechanisms of the disease, not about the existence of it. That is a matter of indisputable fact (unlike the TMS thing you mentioned above, which was invented by John Sarno).
I'm really not sure why you think Lyme isn't a recognized disease. There are certainly cases of misdiagnosis, but that doesn't de-legitimize actual cases of Lyme anymore than diagnosing people using Oxford criteria de-legitimizes ME/CFS.
Dufresne
almost there...
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...and then join an ME/CFS forum with the apparent single-minded purpose of slamming chronic Lyme and suggesting the whole industry is a racket. Pretty controversial for your first thread.
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I have posted extensively on the NDPH threads. I stopped posting on this thread and it was not going anywhere.
I posted the same on a similar site and have gained lots of useful insights and follow up leads.
http://www.healingwell.com/community/default.aspx?f=30&m=3785976#m3785976
I posted the same on a similar site and have gained lots of useful insights and follow up leads.
http://www.healingwell.com/community/default.aspx?f=30&m=3785976#m3785976
IreneF
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A thoughtful thread on this subject by centered educated people
http://www.lymediseasesupportnetwork.org/t/igenex-testing-whats-the-deal/251
http://www.lymediseasesupportnetwork.org/t/igenex-testing-whats-the-deal/251
Dufresne
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I don't know which NDPH threads you're referring to.
According to your activity log this is the only thread on this forum where you've posted.
http://forums.phoenixrising.me/index.php?members/matthewa100.26441/
So you posted the exact same original post on the Healingwell forum a month ago, made your case that Igenex and chronic Lyme are crap, and then decided you should make your case here too?
adreno
PR activist
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They diagnosed you with Lyme disease in the first or second post. I guess that can be viewed as a "useful insight". Or just someone on the Internet's opinion.
Undisclosed
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What does it matter where a member posts? I think if you want to reach a wider audience, that's the way to go.
Obviously, @Matthewa100 wasn't happy with his results. No lab is going to diagnose a patient. I guess it's very disappointing to spend a lot of money and not get any answers.
The problem with IgeneX is -- there will always be arguments about validity and reliability. There will be naysayers and cheerleaders. From what I have read over and over on the internet, you really need to look at clinical symptoms, test results, health history, possible exposure to ticks etc. A diagnosis needs to come from a medical doctor who is knowledgeable about Lyme disease not from a moderator of a website (like the Healingwell website). I suppose when you only seek out information you are going to agree with, you might miss some good information.
If I were you @Matthewa100 --I would google both positive and negative information related to IgeneX and then delve into how a diagnosis of lyme is made these day. Obviously, you have some symptoms that make you believe it's Lyme. Does you clinical picture suggest Lyme despite what any tests are saying.
I wouldn't call IGeneX a scam because that is suggesting they are purposely ripping off customers. Many lyme tests aren't that great due to the nature of testing. They can't all be scams. I wish you luck in getting answers.
Just to be clear, Lyme is a recognized disease.
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Kina - I appreciate your balanced reply. For the record I do believe Lyme is a disease its a case of believing the severity and how many people genuinely have it.
So having reached out to other forums it has become clear that once your 'results' are provided by IgeneX then you must seek a 'lyme specialist.' Based on your results and symptoms they will go through over the 100 different strains of Borrelia alone and give you a verdict based on their opinion.
For those who have built up knowledge in this field through book reading etc they can self-diagnose further down the road.
I am not in anyway trying to be hostile but understanding how this process works. Is there a piece in the puzzle I am missing here?
So having reached out to other forums it has become clear that once your 'results' are provided by IgeneX then you must seek a 'lyme specialist.' Based on your results and symptoms they will go through over the 100 different strains of Borrelia alone and give you a verdict based on their opinion.
For those who have built up knowledge in this field through book reading etc they can self-diagnose further down the road.
I am not in anyway trying to be hostile but understanding how this process works. Is there a piece in the puzzle I am missing here?
Undisclosed
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Just like ME/CFS there are likely many who are misdiagnosed. There are those that are easily diagnosed and treated -- get bitten, see tick, get the bull's eye rash, get a course of antibiotics and are cured. There are those in that group who get the rash, who receive AB's and the treatment is not successful. They develop chronic symptoms and often don't get further appropriate treatment.
There are those who get bitten and do not get a rash and therefore do not realize they have been infected and end up getting sick. Some in this group end up being diagnosed correctly from lab tests and clinical symptoms, some get misdiagnosed with ME, MS, Fibromyalgia etc.
There are those who have never been bitten, who have non-specific vague symptoms, who don't actually have lyme but have been diagnosed as having lyme and receive useless treatments as a result.
At the end of the day, with all the confusing information out there about Lyme, all the arguing, what is the most important thing -- not numbers of genuine cases, not the number of false positives/negatives by particular labs -- it's about finding a correct diagnosis for yourself and getting proper treatment.
A lot of Lyme forums do tend to promote 'Lyme Literate Medical Doctors'. You don't have to see one. If you do see one, you are much more likely to get a diagnosis of Lyme. Many are perfectly reasonable Doctors who diagnose correctly and give proper treatment but there are unscrupulous ones who will diagnose just about anybody who comes to them and then promote expensive useless treatments (same goes for ME, FM etc).
Lyme disease IS a puzzle. There seems to be a lot left to learn about it, we need better tests, etc.
What led you to get tested by IgeneX -- I don't remember if you said anything about actually observing a tick on you, getting a rash, what your actually symptoms are. Maybe if you explained more about your own circumstances, members could lead you to some specific information, resources that might be helpful. Being annoyed at IgeneX won't lead you anywhere. They are a lab and only provide results, nothing else.
IreneF
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I'd like to add to what @Kina said about useless treatments. Not only can unneeded treatment cost money, but long-term treatment with antibiotics can be harmful to many body systems:
http://www.medicalnewstoday.com/articles/289259.php
...as well as spreading antibiotic resistance.
http://www.medicalnewstoday.com/articles/289259.php
...as well as spreading antibiotic resistance.
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IreneF - You beat me to it - http://www.medpagetoday.com/Infecti...7044?xid=nl_mpt_DHE_2016-03-31&eun=g883540d0r Why I want to be 100% certain I have Lyme
At the end of the day, with all the confusing information out there about Lyme, all the arguing, what is the most important thing -- not numbers of genuine cases, not the number of false positives/negatives by particular labs -- it's about finding a correct diagnosis for yourself and getting proper treatment.
Totally agree with everything you have said here. After extensive testing / diagnosis / doctor visits I have narrowed my prognosis to either Lyme or TMS as they have both the most similar features related to my condition. Obviously I hope its TMS rather then Lyme
↑
So having reached out to other forums it has become clear that once your 'results' are provided by IgeneX then you must seek a 'lyme specialist.' Based on your results and symptoms they will go through over the 100 different strains of Borrelia alone and give you a verdict based on their opinion.
A lot of Lyme forums do tend to promote 'Lyme Literate Medical Doctors'. You don't have to see one. If you do see one, you are much more likely to get a diagnosis of Lyme. Many are perfectly reasonable Doctors who diagnose correctly and give proper treatment but there are unscrupulous ones who will diagnose just about anybody who comes to them and then promote expensive useless treatments (same goes for ME, FM etc).
For me this is absolutely critical. If I am candid as an outsider the Lyme treatment seems like a bit of a racket from the labs charging $1500 for some blood test - the 'specialists' charging $800 to review them - or the 'centres' that charge $10,000 per week 'to cure it'
On the forums I have visited very few posters have been prepared to give information out on LLMD's.
What led you to get tested by IgeneX -- I don't remember if you said anything about actually observing a tick on you, getting a rash, what your actually symptoms are. Maybe if you explained more about your own circumstances, members could lead you to some specific information, resources that might be helpful. Being annoyed at IgeneX won't lead you anywhere. They are a lab and only provide results, nothing else.
I didn't get a tick bite of any sort or mark or rash. I did suffer from Candida about 7 years ago but was fully cured.
I had NDPH for over 14 months which is a daily headache from waking to going to sleep. I cannot tell you how awful it was. Some people have had it for decades I don't know how they live tbh. Whilst this happened to me I did everything humanly possible - stem cells. ketmaine IV everything and nothing worked. I then read this : http://www.mdjunction.com/forums/nd...a-nonsense-diagnosis-most-likely-lyme-disease
Basically a long term NDPH sufferer saying this was a nonsense diagnosis and it was likely Lyme. Please see the post above. That's when I decided to take the IgeneX test. By a miracle of god about two weeks after taking the test my NDPH stopped. Why exactly I cannot say but it stopped.
I started to have other symptoms like pain in the neck etc but these were nothing compared to the headaches. Thats when I discovered TMS which seemed to perfectly my condition. I started to read books on it and thought I had found the problem. Then my lyme test from IgenX which is basically where I am at now. One of these two conditions.
At the end of the day, with all the confusing information out there about Lyme, all the arguing, what is the most important thing -- not numbers of genuine cases, not the number of false positives/negatives by particular labs -- it's about finding a correct diagnosis for yourself and getting proper treatment.
Totally agree with everything you have said here. After extensive testing / diagnosis / doctor visits I have narrowed my prognosis to either Lyme or TMS as they have both the most similar features related to my condition. Obviously I hope its TMS rather then Lyme
↑
So having reached out to other forums it has become clear that once your 'results' are provided by IgeneX then you must seek a 'lyme specialist.' Based on your results and symptoms they will go through over the 100 different strains of Borrelia alone and give you a verdict based on their opinion.
A lot of Lyme forums do tend to promote 'Lyme Literate Medical Doctors'. You don't have to see one. If you do see one, you are much more likely to get a diagnosis of Lyme. Many are perfectly reasonable Doctors who diagnose correctly and give proper treatment but there are unscrupulous ones who will diagnose just about anybody who comes to them and then promote expensive useless treatments (same goes for ME, FM etc).
For me this is absolutely critical. If I am candid as an outsider the Lyme treatment seems like a bit of a racket from the labs charging $1500 for some blood test - the 'specialists' charging $800 to review them - or the 'centres' that charge $10,000 per week 'to cure it'
On the forums I have visited very few posters have been prepared to give information out on LLMD's.
What led you to get tested by IgeneX -- I don't remember if you said anything about actually observing a tick on you, getting a rash, what your actually symptoms are. Maybe if you explained more about your own circumstances, members could lead you to some specific information, resources that might be helpful. Being annoyed at IgeneX won't lead you anywhere. They are a lab and only provide results, nothing else.
I didn't get a tick bite of any sort or mark or rash. I did suffer from Candida about 7 years ago but was fully cured.
I had NDPH for over 14 months which is a daily headache from waking to going to sleep. I cannot tell you how awful it was. Some people have had it for decades I don't know how they live tbh. Whilst this happened to me I did everything humanly possible - stem cells. ketmaine IV everything and nothing worked. I then read this : http://www.mdjunction.com/forums/nd...a-nonsense-diagnosis-most-likely-lyme-disease
Basically a long term NDPH sufferer saying this was a nonsense diagnosis and it was likely Lyme. Please see the post above. That's when I decided to take the IgeneX test. By a miracle of god about two weeks after taking the test my NDPH stopped. Why exactly I cannot say but it stopped.
I started to have other symptoms like pain in the neck etc but these were nothing compared to the headaches. Thats when I discovered TMS which seemed to perfectly my condition. I started to read books on it and thought I had found the problem. Then my lyme test from IgenX which is basically where I am at now. One of these two conditions.
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Lastly someone replied to my posting on another forum and they have taken the words right out of my mouth.
"The reason for that is that IgenX tests have no accepted norms. In the mid-1970s, the FDA began exempting certain diagnostic tests from its approval process. Many of these tests — developed, manufactured, and offered by a single lab, such as in a hospital — were variations on common tests, low-risk, or devised for rare diseases and could not be adequately validated.
But companies are using this exemption to market thousands of these so-called lab development tests — for everything from cancer to genetic markers of disease — and many have not been rigorously validated. The labs do not market these tests directly to the public; doing so would trigger stricter FDA review. Instead doctors order the tests for patients.
The FDA is trying to regulate these tests, but clinical laboratories are vigorously opposed, saying it would be too expensive, take years to get the agency’s approval, and stifle innovation.
Although labs have to undergo certification to ensure they have the right expertise and use proper procedures, no one is actually looking if there is validity to the clinician claims [these labs] are making.
To get around all of this IgeneX only reports the results of their "development test" they do not offer an interpretation of the results leaving that to the physician ordering the test. That interpretation varies widley. Thus they use the - (not present), + (present but low), ++ (present medium) +++ (present high) +/- (indeterminite there but not as much as low) They do this because no one (including them) has been able to determine a laboratory norm. So who determine what these tests mean?
It falls to the ordering doctor who can claim to be an expert (there is no way to know as there is no regulatory body) nor is there any standard of care. You can take the results to six different docs and you can get six different treatment plans."
"The reason for that is that IgenX tests have no accepted norms. In the mid-1970s, the FDA began exempting certain diagnostic tests from its approval process. Many of these tests — developed, manufactured, and offered by a single lab, such as in a hospital — were variations on common tests, low-risk, or devised for rare diseases and could not be adequately validated.
But companies are using this exemption to market thousands of these so-called lab development tests — for everything from cancer to genetic markers of disease — and many have not been rigorously validated. The labs do not market these tests directly to the public; doing so would trigger stricter FDA review. Instead doctors order the tests for patients.
The FDA is trying to regulate these tests, but clinical laboratories are vigorously opposed, saying it would be too expensive, take years to get the agency’s approval, and stifle innovation.
Although labs have to undergo certification to ensure they have the right expertise and use proper procedures, no one is actually looking if there is validity to the clinician claims [these labs] are making.
To get around all of this IgeneX only reports the results of their "development test" they do not offer an interpretation of the results leaving that to the physician ordering the test. That interpretation varies widley. Thus they use the - (not present), + (present but low), ++ (present medium) +++ (present high) +/- (indeterminite there but not as much as low) They do this because no one (including them) has been able to determine a laboratory norm. So who determine what these tests mean?
It falls to the ordering doctor who can claim to be an expert (there is no way to know as there is no regulatory body) nor is there any standard of care. You can take the results to six different docs and you can get six different treatment plans."
I might be able to add a little insight to this.
I had a background of being outdoorsy with hunting and playing in the woods as a kid. Yes there were two separate times I got ticks on me. No rash, no symptoms, nothing... It was about 10 years later I got sick with what doctors are now calling CFS/POTS.
When I first became ill, about a year into my illness we thought, "What about lyme?" I went to an infectious disease doctor, he ran his western blot and ELISA. All Negative. Then I went to a 'LLMD' and she ran a Bowen test. I was positive. Well it turns out all Bowen test comes back positive. So I go to another 'LLMD', he runs Igenex. It comes back positive'ish'. So he does oral antibiotics along with heparin on me for a year. I don't get any better.
I go to a lyme disease treatment clinic for almost 2 years where I get IV antibiotics, oral antibiotics, meyers cocktails, heparin, bicillin shots, and tons of supplements. They also used Igenex. There was always about 30 patients there receiving treatment, and they would come and go. Many never got better and just ran out of money. Many of these patient's family and friends would use the Igenex test on themselves and they were positive even though not sick...
My mom ran the test on herself and she was positive. After I decided to leave and seek other doctors, I found out that clinic got shutdown for tax evasion, false diagnosis lawsuits, insurance fraud, faulty accounting practices, and the list goes on. The doctor lost her license and was put under house arrest, her husband I believe served time in jail while also owning a lot of taxes.
I would say I am pretty confident I don't have lyme. One thing to point out, I think everyone needs to get away from the word 'lyme'. They need to start calling infections for what they are. Borrelia, bartonella, babesia, RMSF, ect.
I had a background of being outdoorsy with hunting and playing in the woods as a kid. Yes there were two separate times I got ticks on me. No rash, no symptoms, nothing... It was about 10 years later I got sick with what doctors are now calling CFS/POTS.
When I first became ill, about a year into my illness we thought, "What about lyme?" I went to an infectious disease doctor, he ran his western blot and ELISA. All Negative. Then I went to a 'LLMD' and she ran a Bowen test. I was positive. Well it turns out all Bowen test comes back positive. So I go to another 'LLMD', he runs Igenex. It comes back positive'ish'. So he does oral antibiotics along with heparin on me for a year. I don't get any better.
I go to a lyme disease treatment clinic for almost 2 years where I get IV antibiotics, oral antibiotics, meyers cocktails, heparin, bicillin shots, and tons of supplements. They also used Igenex. There was always about 30 patients there receiving treatment, and they would come and go. Many never got better and just ran out of money. Many of these patient's family and friends would use the Igenex test on themselves and they were positive even though not sick...
My mom ran the test on herself and she was positive. After I decided to leave and seek other doctors, I found out that clinic got shutdown for tax evasion, false diagnosis lawsuits, insurance fraud, faulty accounting practices, and the list goes on. The doctor lost her license and was put under house arrest, her husband I believe served time in jail while also owning a lot of taxes.
I would say I am pretty confident I don't have lyme. One thing to point out, I think everyone needs to get away from the word 'lyme'. They need to start calling infections for what they are. Borrelia, bartonella, babesia, RMSF, ect.
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Belbyr- Thanks for your candid answer. You will probably be attacked by many on this thread who have been brain washed into believing what they have been told
No problem. I have to let my experience speak for itself. I like many others were looking to be 'validated' by our illness and one of those options was lyme disease as long as I found a LLMD to agree with me. I was even an avid member on popular lyme forum for a few years and learned about all the alternative things patients were doing. I even bought a rife machine, I'm embarrassed to say...
I have kept in touch with most of the people I met while I was at that clinic through social media. So I am not the only one with this experience. Our treatment regime was IV antibiotics in heavy doses, twice a day, everyday of the week. Did it for 2 years and felt no better, so if their are any doubters... They have to explain how that was not enough.
I have kept in touch with most of the people I met while I was at that clinic through social media. So I am not the only one with this experience. Our treatment regime was IV antibiotics in heavy doses, twice a day, everyday of the week. Did it for 2 years and felt no better, so if their are any doubters... They have to explain how that was not enough.
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I share your concern. I just posted about a study showing a high false positive rate w/ Igenex. I'm worried about the validity of these results.