Aa
Lyme Testing, Anxiety, and IGeneX Labs
I have read several stories on this website that are very similar to mine. About nine months ago I had a severe anxiety attack out of the blue. The anxiety led to severe depression with continued anxiety. It has been the worst nine months of my 49 years. Because there was no apparent reason for anxiety in my life, I have felt all along that there had to be some underlying reason. I've been to half a dozen doctors and had every conceivable test trying to find a cause, all to no avail. My wife and brother-in-law have been battling chronic Lyme for several years. Both have severe physical symptoms but no significant anxiety. Until recently, I was unaware that Lyme could create the symptoms I have been experiencing. Since I am an outdoorsman and lived in one of the Lyme hot spots for years (Eau Claire, Wisconsin), I now am wondering if this could be the underlying cause I've been looking for. Our family doctor said there is little chance that both my wife and I would have Lyme. Then I described just one trip through the woods around our house resulted in finding 47 ticks between my son and I. He then changed his mind quickly and agreed to have me tested.
So here is my question. I have been told to have the Western Blot, IgG and IgM test run. The doctor is having this done by an unknown lab. I have been told that I should request that the test be performed by the IGeneX labs because they are more accurate. I have also been told that there results come back positive 98% of the time. Is this true? If so, that doesn't seem scientifically or statistically correct either. Can anyone give me feedback or point me to a website where I can learn more about this?
So here is my question. I have been told to have the Western Blot, IgG and IgM test run. The doctor is having this done by an unknown lab. I have been told that I should request that the test be performed by the IGeneX labs because they are more accurate. I have also been told that there results come back positive 98% of the time. Is this true? If so, that doesn't seem scientifically or statistically correct either. Can anyone give me feedback or point me to a website where I can learn more about this?
Greetings.
Try the ILADS [dot] org website for data, and also the Igenex website. Anxiety is a BIG component of Lyme for me.
Non-LLMDs don't like Igenex for reasons I don't know except that they don't like it -- perhaps because Igenex looks at more markers of Lyme infection than the other labs do, thus increasing the rate of positive results on tests done through Igenex. That increase in positive results runs counter to the IDSA/CDC approach that there's nothing to see here, just move along, folks.
Perhaps you could get your MD to humor you and send your blood to BOTH labs, Igenex, and your MD's preferred lab. That way at least you'd have the results from Igenex, even if you decide to change MDs. (Always *always* get copies of ALL your test results and keep your own file to copy and give to other docs you may consult. I seem to keep better files than my docs do, because it matters to me a lot more than it matters to the doc's file clerk.) [Sorry, I'm tired and a bit cranky right now!]
That statement you repeat about IGenex coming back positive 98% of the time doesn't surprise me. It fits with nonLLMDs rejecting the message because of who the messenger is, instead of considering what the message says. Pretty common reaction from nonLLMDs. The sequence of events is: CDC/IDSA says Lyme is uncommon and easily cured and so therefore any lab that sends back a lot of positive Lyme tests must be in error and so therefore don't use that lab because it must be wrong. So much for the scientific method, eh.
The real problem is that the Western blot and ELISA tests are notoriously unreliable, and yet nonLLMDs treat them like they are the end all, be all, and rely on them TOO much, thus underdiagnosing Lyme and its coinfections. (Which of course fits with the 'no Lyme here' mantra.)
Speaking of which, if i were you, I would ask my MD which coinfections you are being tested for. Nobody told the ticks they are allowed to carry only one disease, and so like an unlicensed taxi, they will pick up anybody along the way and pass it along to you.
It does concern me that your MD first told you that it was unlikely that you AND your wife would both have Lyme. Uh, why unlikely? The ticks don't care who you're married to. It comes back to that 'Lyme is rare' mantra. That says something about your MD's approach and point of view, so be ready to think about finding an LLMD if your MD doesn't follow through.
Again, sorry for my cranky comments -- let us know how you do and what your MD says. Best wishes --
Try the ILADS [dot] org website for data, and also the Igenex website. Anxiety is a BIG component of Lyme for me.
Non-LLMDs don't like Igenex for reasons I don't know except that they don't like it -- perhaps because Igenex looks at more markers of Lyme infection than the other labs do, thus increasing the rate of positive results on tests done through Igenex. That increase in positive results runs counter to the IDSA/CDC approach that there's nothing to see here, just move along, folks.
Perhaps you could get your MD to humor you and send your blood to BOTH labs, Igenex, and your MD's preferred lab. That way at least you'd have the results from Igenex, even if you decide to change MDs. (Always *always* get copies of ALL your test results and keep your own file to copy and give to other docs you may consult. I seem to keep better files than my docs do, because it matters to me a lot more than it matters to the doc's file clerk.) [Sorry, I'm tired and a bit cranky right now!]
That statement you repeat about IGenex coming back positive 98% of the time doesn't surprise me. It fits with nonLLMDs rejecting the message because of who the messenger is, instead of considering what the message says. Pretty common reaction from nonLLMDs. The sequence of events is: CDC/IDSA says Lyme is uncommon and easily cured and so therefore any lab that sends back a lot of positive Lyme tests must be in error and so therefore don't use that lab because it must be wrong. So much for the scientific method, eh.
The real problem is that the Western blot and ELISA tests are notoriously unreliable, and yet nonLLMDs treat them like they are the end all, be all, and rely on them TOO much, thus underdiagnosing Lyme and its coinfections. (Which of course fits with the 'no Lyme here' mantra.)
Speaking of which, if i were you, I would ask my MD which coinfections you are being tested for. Nobody told the ticks they are allowed to carry only one disease, and so like an unlicensed taxi, they will pick up anybody along the way and pass it along to you.
It does concern me that your MD first told you that it was unlikely that you AND your wife would both have Lyme. Uh, why unlikely? The ticks don't care who you're married to. It comes back to that 'Lyme is rare' mantra. That says something about your MD's approach and point of view, so be ready to think about finding an LLMD if your MD doesn't follow through.
Again, sorry for my cranky comments -- let us know how you do and what your MD says. Best wishes --
Thanks Jackie,
I didn't mention that my son had a stroke four years ago at 17 after having six months of body ailments which, now looking back, are congruent with lyme symptoms. I just recently learned that Lyme is a hypercoagulant as well. Out doctor really didn't think it was likely that all three of us have/had lyme. I'm beginning to see the "you're nuts" attitude that I read about. I will keep you posted. Thanks again.
I didn't mention that my son had a stroke four years ago at 17 after having six months of body ailments which, now looking back, are congruent with lyme symptoms. I just recently learned that Lyme is a hypercoagulant as well. Out doctor really didn't think it was likely that all three of us have/had lyme. I'm beginning to see the "you're nuts" attitude that I read about. I will keep you posted. Thanks again.
I don't know the actual percentage of positive results but I can tell you that my test was not positive by Igenex but I did have the bullseye rash. You could possibly inquire by going to the Igenex website.
As far as the anxiety goes yes lyme can cause it. It can also cause depression, bi-polar disorder, sleep disturbance and more.
I don't know if you have lyme but considering the incidence of it in your family and the fact that you lived in an endemic area I would think it is certainly possible or likely.
Sometimes the western blot comes back positive from standard labs. It's worth getting this done to see the result. You could go from there.
As far as the anxiety goes yes lyme can cause it. It can also cause depression, bi-polar disorder, sleep disturbance and more.
I don't know if you have lyme but considering the incidence of it in your family and the fact that you lived in an endemic area I would think it is certainly possible or likely.
Sometimes the western blot comes back positive from standard labs. It's worth getting this done to see the result. You could go from there.
My test by Igenex was not CDC positive. I've also heard those rumors that all tests from them come back positive, but from what I've read on patient sites like these, it isn't true.
I never had anxiety problems before in my life until I started treating my Lyme and co-infections. Then I started to get panic attacks and issues where it would feel like I was short of breath, though I was breathing just fine. I also experienced some strong mood swings. All of these occurred without correlation to life events, and got better further in treatment, so I do blame the Lyme.
Igenex has a website with contact info, you could try addressing your questions/concerns directly to them.
I also don't understand why having family members with Lyme would make it unlikely in you. If anything, it's more suggestive, since you live with and share activities with them.
Do you have other symptoms besides the anxiety that could be from Lyme?
I never had anxiety problems before in my life until I started treating my Lyme and co-infections. Then I started to get panic attacks and issues where it would feel like I was short of breath, though I was breathing just fine. I also experienced some strong mood swings. All of these occurred without correlation to life events, and got better further in treatment, so I do blame the Lyme.
Igenex has a website with contact info, you could try addressing your questions/concerns directly to them.
I also don't understand why having family members with Lyme would make it unlikely in you. If anything, it's more suggestive, since you live with and share activities with them.
Do you have other symptoms besides the anxiety that could be from Lyme?
There's a lot of controversy surrounding the Igenex labs, I believe it was the new york times that did an investigation they claimed them to be providing false positives as well as stories of people getting positive test results and never having the disease but then lyme patients claim them to be the end all be all and there's a conspiracy so the insurance companies can save money you should see a reputable lyme doc and they can give you the best course of action
I have been fighting with symptoms that are lyme like and have had several blood tests, all of which come back negative. I thought I had something to hang my hat on with one band positive on the western blot but the rhuemtologist and family dr agree that it means nothing. The pain in my joints, ringing in my ears, short term memory loss is anxiety related.
Yes, there is great controversy surrounding Lyme disease and the possiblity of co-infections. While the CDC, NIH, and the IDSA all agree on proper emperic data to diagnose Lyme, many believe it can be diagnosed by unproven tests and or physical testing and history . With this said I would like to draw attention to the very true fact that there is probable grounds for prosecution of collusion of Igenex and many "Lyme literate doctors". Why do I say this??? Has anyone ever noticed the fact that founder and CEO is Nick Harris? Has anyone noticed that his son is Steven Harris a supposed "Lyme specialist"?
When a practitioner uses his fathers laboratory to make a diagnoses ot Lyme it should be suspect. No?
Why do all these "Lyme" specialist use the same lab? Why do they request that you sign a waiver? Why do they ask you to buy supplements that you can only get from them?
I ask this out of concern for patients, not out of any casue or intention. I have practiced in the health field for many years and have seen many horrendous things. But, to me this is malpractice and harmful to patients.Just a thought for today ;-)
When a practitioner uses his fathers laboratory to make a diagnoses ot Lyme it should be suspect. No?
Why do all these "Lyme" specialist use the same lab? Why do they request that you sign a waiver? Why do they ask you to buy supplements that you can only get from them?
I ask this out of concern for patients, not out of any casue or intention. I have practiced in the health field for many years and have seen many horrendous things. But, to me this is malpractice and harmful to patients.Just a thought for today ;-)
The only 'conspiracy' I see is one of blind ignorance and vanity on the part of IDSA and its champions like Wormser and Steere, who seem to spend their time defending their early work instead of updating it, and slandering anyone who questions them.
You say: "Yes, there is great controversy surrounding Lyme disease and the possiblity of co-infections." Agreed.
"While the CDC, NIH, and the IDSA all agree on proper emperic data to diagnose Lyme, many believe it can be diagnosed by unproven tests and or physical testing and history." Just because CDC, NIH and IDSA all agree doesn't make them right. They are consistently unwilling to update their understanding of the ailments in light of new research and studies.
"With this said I would like to draw attention to the very true fact that there is probable grounds for prosecution of collusion of Igenex and many 'Lyme literate doctors'. " Then bring suit, dude, or get your local to DA to do so. Or heck, why not the Justice Department?
"Why do I say this??? Has anyone ever noticed the fact that founder and CEO is Nick Harris? Has anyone noticed that his son is Steven Harris a supposed "Lyme specialist"?" So what? Maybe they are both really smart and independent thinkers, unlike the koolaid drinkers at the IDSA.
"When a practitioner uses his fathers laboratory to make a diagnoses ot Lyme it should be suspect. No?" Suspect? Sure, ask the question, but then how do you account for all the OTHER ILADS docs out there? Are they all related to the Harrises too?
"Why do all these "Lyme" specialist use the same lab?" They don't. There are other labs. IGeneX has a test methodology that other labs don't, and it is useful in Lyme because it can find infections after the immune system has given up and gone home, leaving the patients still very ill.
"Why do they request that you sign a waiver?" A waiver about what?
"Why do they ask you to buy supplements that you can only get from them?" Who does this and what are they asking?
"I ask this out of concern for patients, not out of any casue or intention. I have practiced in the health field for many years and have seen many horrendous things." Yeah, and many of them come out of IDSA.
"But, to me this is malpractice and harmful to patients.Just a thought for today ;-) " Lotsa luck if you get Lyme and follow the IDSA approach.
You say: "Yes, there is great controversy surrounding Lyme disease and the possiblity of co-infections." Agreed.
"While the CDC, NIH, and the IDSA all agree on proper emperic data to diagnose Lyme, many believe it can be diagnosed by unproven tests and or physical testing and history." Just because CDC, NIH and IDSA all agree doesn't make them right. They are consistently unwilling to update their understanding of the ailments in light of new research and studies.
"With this said I would like to draw attention to the very true fact that there is probable grounds for prosecution of collusion of Igenex and many 'Lyme literate doctors'. " Then bring suit, dude, or get your local to DA to do so. Or heck, why not the Justice Department?
"Why do I say this??? Has anyone ever noticed the fact that founder and CEO is Nick Harris? Has anyone noticed that his son is Steven Harris a supposed "Lyme specialist"?" So what? Maybe they are both really smart and independent thinkers, unlike the koolaid drinkers at the IDSA.
"When a practitioner uses his fathers laboratory to make a diagnoses ot Lyme it should be suspect. No?" Suspect? Sure, ask the question, but then how do you account for all the OTHER ILADS docs out there? Are they all related to the Harrises too?
"Why do all these "Lyme" specialist use the same lab?" They don't. There are other labs. IGeneX has a test methodology that other labs don't, and it is useful in Lyme because it can find infections after the immune system has given up and gone home, leaving the patients still very ill.
"Why do they request that you sign a waiver?" A waiver about what?
"Why do they ask you to buy supplements that you can only get from them?" Who does this and what are they asking?
"I ask this out of concern for patients, not out of any casue or intention. I have practiced in the health field for many years and have seen many horrendous things." Yeah, and many of them come out of IDSA.
"But, to me this is malpractice and harmful to patients.Just a thought for today ;-) " Lotsa luck if you get Lyme and follow the IDSA approach.
IgenX diagnosed my co-infection of Barts and my symptoms fit it to a T. With treatment I have seen a great deal of improvement. I am not sure what waiver you are talking about or which supplements you are talking about. I never signed anything or bought supplements from any certain place. I find them to be a blessing since my Western Blot was negative and other tests by other labs were showing a false negative.
Sorry but I am very pro- IgenX. I have a few medical professional friends who have Lyme and who deal with IgenX every day. They have done nothing but good for those who were and are suffering.
Sorry but I am very pro- IgenX. I have a few medical professional friends who have Lyme and who deal with IgenX every day. They have done nothing but good for those who were and are suffering.
With this said I would like to draw attention to the very true fact that there is probable grounds for prosecution of collusion of Igenex and many "Lyme literate doctors". Why do I say this??? Has anyone ever noticed the fact that founder and CEO is Nick Harris? Has anyone noticed that his son is Steven Harris a supposed "Lyme specialist"?
When a practitioner uses his fathers laboratory to make a diagnoses ot Lyme it should be suspect. No?
NO, NOT IF THAT IS THE BEST LAB AVAILABLE.
NB I am not using capitals to shout but to distinguish my replies from the original post by 2indebt)
Why do all these "Lyme" specialist use the same lab?
THEY DON'T. THERE ARE OTHER LABS THEY USE TOO.
Why do they request that you sign a waiver?
MY LYME DOCTOR HAS NEVER ASKED ME TO SIGN ANY WAIVER.
Why do they ask you to buy supplements that you can only get from them?
AGAIN, I'VE NEVER BEEN ASKED TO DO THIS, AND NEITHER HAVE MANY OTHER PATIENTS HERE.
I ask this out of concern for patients, not out of any casue or intention. I have practiced in the health field for many years and have seen many horrendous things. But, to me this is malpractice and harmful to patients.
WHAT IS REALLY HARMFUL FOR PATIENTS IS HAVING LYME DISEASE THAT GOES UNDIAGNOSED AND UNTREATED FOR YEARS.
I WAS GOING BLIND, COULD HARDLY WALK AND SUFFERED PERIODS OF BOWEL INCONTINENCE BY THE TIME I WAS DIAGNOSED.
I WENT TO OVER 30 DOCTOR REPEATEDLY OVER A PERIOD OF 28 YEARS SEEKING A DIAGNOSIS AND NEVER GOT ONE. I WAS NEVER TESTED FOR LYME DISEASE.
THAT IS MY IDEA OF MALPRACTICE.
When a practitioner uses his fathers laboratory to make a diagnoses ot Lyme it should be suspect. No?
NO, NOT IF THAT IS THE BEST LAB AVAILABLE.
NB I am not using capitals to shout but to distinguish my replies from the original post by 2indebt)
Why do all these "Lyme" specialist use the same lab?
THEY DON'T. THERE ARE OTHER LABS THEY USE TOO.
Why do they request that you sign a waiver?
MY LYME DOCTOR HAS NEVER ASKED ME TO SIGN ANY WAIVER.
Why do they ask you to buy supplements that you can only get from them?
AGAIN, I'VE NEVER BEEN ASKED TO DO THIS, AND NEITHER HAVE MANY OTHER PATIENTS HERE.
I ask this out of concern for patients, not out of any casue or intention. I have practiced in the health field for many years and have seen many horrendous things. But, to me this is malpractice and harmful to patients.
WHAT IS REALLY HARMFUL FOR PATIENTS IS HAVING LYME DISEASE THAT GOES UNDIAGNOSED AND UNTREATED FOR YEARS.
I WAS GOING BLIND, COULD HARDLY WALK AND SUFFERED PERIODS OF BOWEL INCONTINENCE BY THE TIME I WAS DIAGNOSED.
I WENT TO OVER 30 DOCTOR REPEATEDLY OVER A PERIOD OF 28 YEARS SEEKING A DIAGNOSIS AND NEVER GOT ONE. I WAS NEVER TESTED FOR LYME DISEASE.
THAT IS MY IDEA OF MALPRACTICE.
Jackie, I must say I sense a tiny bit of hostility here.
Most "Lyme" specialist will request a signed waiver priot to treatment in case of med errors i.e. improper dosing. using medications for off label use. And also require extreme costs out of pocket. I have seen patients treated for Lyme with > 1 year of IV antibiotics like Ertapenem. The carbapenems do not treat Lyme.
None of the organizations I mentioned are perfect and neither is Igenex.
If their testing so superior why is it not used by others? It is not proprietary technology. Our clinic has treat many true Lyme disease patients and also suspected Lyme in some cases as it is often better safe than sorry.
Lyme is vicious disease that is very real and definetively under diagnosed across the USA. Most do not even know that there is Lyme disease in Europe, Australia and elsewhere.
My only intention in bringing up the relationship is make some aware of the possibility of things not being what they seem. You seem very adamant that what these gentlemen are doing is proper. I respectfully disagree.
While no method, belief, or way of doing things is always correct atleast we live in a country where we can express our views and choose treatment we find most logical.
Best
2indebt
Most "Lyme" specialist will request a signed waiver priot to treatment in case of med errors i.e. improper dosing. using medications for off label use. And also require extreme costs out of pocket. I have seen patients treated for Lyme with > 1 year of IV antibiotics like Ertapenem. The carbapenems do not treat Lyme.
None of the organizations I mentioned are perfect and neither is Igenex.
If their testing so superior why is it not used by others? It is not proprietary technology. Our clinic has treat many true Lyme disease patients and also suspected Lyme in some cases as it is often better safe than sorry.
Lyme is vicious disease that is very real and definetively under diagnosed across the USA. Most do not even know that there is Lyme disease in Europe, Australia and elsewhere.
My only intention in bringing up the relationship is make some aware of the possibility of things not being what they seem. You seem very adamant that what these gentlemen are doing is proper. I respectfully disagree.
While no method, belief, or way of doing things is always correct atleast we live in a country where we can express our views and choose treatment we find most logical.
Best
2indebt
You make serious and unsubstantiated claims here against IGeneX and the Harrises (father and son).
Unlike you, I do not have a financial interest in seeing IGeneX be taken down. And I quote you: "Our clinic has treat [sic] many true Lyme disease patients and also suspected Lyme in some cases as it is often better safe than sorry." So ... you yourself have a clinic, and IGeneX is eating your lunch?
I will skip over the rest of the non sequiturs in your post, and leave it at your acknowledgment that you are a competitor of IGeneX -- and are simply mudslinging for competitive advantage.
Unlike you, I do not have a financial interest in seeing IGeneX be taken down. And I quote you: "Our clinic has treat [sic] many true Lyme disease patients and also suspected Lyme in some cases as it is often better safe than sorry." So ... you yourself have a clinic, and IGeneX is eating your lunch?
I will skip over the rest of the non sequiturs in your post, and leave it at your acknowledgment that you are a competitor of IGeneX -- and are simply mudslinging for competitive advantage.
Alas you are mistaken. I work for a non profit sliding scale clinic that pays salary to providers and no encentives. More testing etc.. does not increase wages for us. We give the best care possible at the lowest cost so that we can treat the most patients and give those that need care that can not afford it what they need.
No one is turned away for any reason, period!
So no money for me is not an issue here. what is an issue is practitioners giving care and hope that is unfounded. I will caveate this by saying that I acknowledge that some of the patients that have been treated for Lyme truely had Lyme as diagnosed by Igenex. As I initially stated I think it worthy to question the practice of using your father's lab to test your own patients to make the diagnosis. It is far from standard practice and to me unethical as well.
I ask you this, what is the difference? If your water company has their water tested by the company that makes the filters the water company uses? Would you believe the results? Or the equipment that diagnosis your engine troubles is made by your mechanics owners?
Best to you
No one is turned away for any reason, period!
So no money for me is not an issue here. what is an issue is practitioners giving care and hope that is unfounded. I will caveate this by saying that I acknowledge that some of the patients that have been treated for Lyme truely had Lyme as diagnosed by Igenex. As I initially stated I think it worthy to question the practice of using your father's lab to test your own patients to make the diagnosis. It is far from standard practice and to me unethical as well.
I ask you this, what is the difference? If your water company has their water tested by the company that makes the filters the water company uses? Would you believe the results? Or the equipment that diagnosis your engine troubles is made by your mechanics owners?
Best to you
Bravo,
I had periods of blindness, passing out, memory loss, muscle weakness, couldn't walk and nobody believed in or tested me for Lyme until I begged them and then I got false negative results and was thrown out of a medical practice because they didn't know what to do with me after they diagnosed me with Hoshimotos, Lupus, Fibromyalgia, Vasculitis and more and that is MALPRACTICE!
I had periods of blindness, passing out, memory loss, muscle weakness, couldn't walk and nobody believed in or tested me for Lyme until I begged them and then I got false negative results and was thrown out of a medical practice because they didn't know what to do with me after they diagnosed me with Hoshimotos, Lupus, Fibromyalgia, Vasculitis and more and that is MALPRACTICE!
Where do you get these ideas of waivers being signed and supplements being bought at only certain places????? As I said, I know medical professionals that treat Lyme patients and they are in other states and I have never heard of that ever and they haven't either.
Where do I get the idea of waivers and supplements? From the websites of the providers. Please look up a couple of examples and look up the forms and or policies. The costs are very prominent in the contracts. Charging $365 for a 15 minute phone call. I definetly am in the wrong clinic if I want to make money.
Example providers:
Steven Harris Redwood CA
Pacific Frontier Medical, Inc
Susan Marra Seattle WA
Example providers:
Steven Harris Redwood CA
Pacific Frontier Medical, Inc
Susan Marra Seattle WA
Okay, let me back up a step and give you the benefit of the doubt: you think it's wrong for docs to sell supplements and wrong for them to ask for waivers from their patients. It's a free country, and you're entitled to believe that doing either of those things is wrong.
Not everyone agrees with you.
I don't care if a doc sells supplements, but none of my docs sells them. There are a lot of crummy, substandard vits and supps out there, and some docs who trust a certain brand or supplier to have high quality vits/supps may do their patients a service by offering them in the dr's office for convenience.
When you have Lyme, organizing yourself into reading reviews of various vits/supps and comparing the claims etc, and then finding out where to buy the best ones, is sometimes beyond what you can handle.
So a doc may be making money off selling vits/supps (tho I have never been to a doc who does), and if so, so what? The doc charges for his/her time. Is there something wrong with selling vits/supps the doc has confidence in? Big screaming deal. So What. If you don't like it, don't go to that doc.
Re waivers: In some states, the medical boards (staffed by people like you who believe that everything that is worth knowing about Lyme is already known and all cures are full and adequate and established and nothing is left to learn) are just keen to go after docs for take what the med boards deem wrong and even evil.
A little humility is in order. Are you old enough to remember when AIDS first came on the scene? Have you seen the videos of white-coated CDC docs on national TV news, stethoscopes slung around necks, intoning solemnly that if you weren't gay or Haitian, then you couldn't get AIDS? That was all that was known at the time, that AIDS had been found only in gays or Haitians. People were terribly frightened that AIDS could be passed around like the sniffles, and the CDC was trying to calm people down.
Those were herald cases, the first outbreaks of a new disease. Mother Nature did not stop evolving the day you got out of school, and there are new and emerging diseases everywhere. AIDS is/was one. Lyme is another.
The arrogance of medicine is to assume that everything important has already been discovered, examined, classified, organized and backed into a treatment corner. Clearly that is not so. We are used to the idea that cancer is still being figured out. AIDS can be kept at bay, but its secretes are not entirely unraveled yet. Lyme is another, whether you like it or not.
The stuffy docs who believe everything they needed to know was transmitted to them on the last day they attended medical school are the ones who inhabit state medical boards and do their best to shut up docs who see the misery that is untreated or undertreated Lyme and its coinfections. Heresy often ends up in this kind of stand off. And eventually heresy is proven to be right and becomes orthodoxy.
Till then, docs who want to avoid getting hung in the figurative village square may get releases from their patients to be able to wave in the face of the local/state medical board showing that the patient was aware of the controversies surrounding Lyme, and consented to the doc's treatment anyway. A doc in such a jurisdiction is prudent to take that course of action.
You, however, have been drinking the koolaid, and I wish for you that your eyes and mind are opened soon to the misery that is Lyme. I've been there, I know others who have been there and some who are still there. These are difficult diseases to diagnose and treat and are life-altering.
Telling people that their infection has been cured and they just have to live with whatever symptoms are remaining is simply cruel and a violation imo of the Hippocratic oath: "First, do no harm."
You are entitled to believe our docs are quacks, but until you have Lyme and know its misery and are then treated and cured, you don't understand.
You simply have no idea. Get yourself a good case of Lyme, take a couple weeks of abx, and see how it goes. You'll be singing a different tune.
Not everyone agrees with you.
I don't care if a doc sells supplements, but none of my docs sells them. There are a lot of crummy, substandard vits and supps out there, and some docs who trust a certain brand or supplier to have high quality vits/supps may do their patients a service by offering them in the dr's office for convenience.
When you have Lyme, organizing yourself into reading reviews of various vits/supps and comparing the claims etc, and then finding out where to buy the best ones, is sometimes beyond what you can handle.
So a doc may be making money off selling vits/supps (tho I have never been to a doc who does), and if so, so what? The doc charges for his/her time. Is there something wrong with selling vits/supps the doc has confidence in? Big screaming deal. So What. If you don't like it, don't go to that doc.
Re waivers: In some states, the medical boards (staffed by people like you who believe that everything that is worth knowing about Lyme is already known and all cures are full and adequate and established and nothing is left to learn) are just keen to go after docs for take what the med boards deem wrong and even evil.
A little humility is in order. Are you old enough to remember when AIDS first came on the scene? Have you seen the videos of white-coated CDC docs on national TV news, stethoscopes slung around necks, intoning solemnly that if you weren't gay or Haitian, then you couldn't get AIDS? That was all that was known at the time, that AIDS had been found only in gays or Haitians. People were terribly frightened that AIDS could be passed around like the sniffles, and the CDC was trying to calm people down.
Those were herald cases, the first outbreaks of a new disease. Mother Nature did not stop evolving the day you got out of school, and there are new and emerging diseases everywhere. AIDS is/was one. Lyme is another.
The arrogance of medicine is to assume that everything important has already been discovered, examined, classified, organized and backed into a treatment corner. Clearly that is not so. We are used to the idea that cancer is still being figured out. AIDS can be kept at bay, but its secretes are not entirely unraveled yet. Lyme is another, whether you like it or not.
The stuffy docs who believe everything they needed to know was transmitted to them on the last day they attended medical school are the ones who inhabit state medical boards and do their best to shut up docs who see the misery that is untreated or undertreated Lyme and its coinfections. Heresy often ends up in this kind of stand off. And eventually heresy is proven to be right and becomes orthodoxy.
Till then, docs who want to avoid getting hung in the figurative village square may get releases from their patients to be able to wave in the face of the local/state medical board showing that the patient was aware of the controversies surrounding Lyme, and consented to the doc's treatment anyway. A doc in such a jurisdiction is prudent to take that course of action.
You, however, have been drinking the koolaid, and I wish for you that your eyes and mind are opened soon to the misery that is Lyme. I've been there, I know others who have been there and some who are still there. These are difficult diseases to diagnose and treat and are life-altering.
Telling people that their infection has been cured and they just have to live with whatever symptoms are remaining is simply cruel and a violation imo of the Hippocratic oath: "First, do no harm."
You are entitled to believe our docs are quacks, but until you have Lyme and know its misery and are then treated and cured, you don't understand.
You simply have no idea. Get yourself a good case of Lyme, take a couple weeks of abx, and see how it goes. You'll be singing a different tune.
And one more thing. Your snide little comment about sensing a tiny bit of hostility in me? You ain't seen nothing until you have lost five years of your life to this disease, including more than a year being told there was nothing wrong with me. I was unable to work, unable to participate in my family's life, lost touch with friends and family, unable to continue with the volunteer work I did, lost my job, used up my savings, and .... you think I'm *hostile* when people like you tell me I don't know how I am feeling and there is nothing really wrong with me?
D@mn straight I'm hostile. You live through this and find out for yourself. Condescension does not become anyone in the medical field, and that includes you.
D@mn straight I'm hostile. You live through this and find out for yourself. Condescension does not become anyone in the medical field, and that includes you.
Your logic makes no sense. You argue that it is malpractice for Steven Harris to diagnose patients based on IGeneX test results. According to your ethics, he should only be able to use other labs, whose testing is inferior. And how is that beneficial for his patients? As long as he is disclosing the relationship, patients can make their own decision on whether to go to him. Or they can take their IGeneX results to get snother opinion.
And what about every other Lyme practitioner who prefers IGeneX? They are not all Nick Harris's sons. Have you considered that they prefer IgeneX because of better results? Instead of reading doctors' websites, why don't you contact IGeneX directly and ask them why they are different and why they claim to provide more advanced testing. Just because some doc in Seattle wants $345 for a phone call doesn't mean IGeneX is a scam.
You truly sound like someone who is just repeating the gossip that comes from higher up the pecking order in the world of medicine. If you really did your research, rather than caved to vague, unsubstantiated rumors, you would change your tune. Even better, read Pamela Weintraub's book, "Cure Unknown."
You might also spend some time reading the LymeMD's blog about labs. He has a lot to say about how varied the labs's results can be. He tells one story of sending 3 different vials from the same blood draw to three labs, and getting different results from each. And yet patients are denied treatment based on these tests??
Most labs don't even report the bands not used in the CDC criteria. IGeneX shows numerous bands and will call a result 'positive' if any two Lyme specific bands are positive. One major lab even offered up an alternative diagnostic criteria that they said their vast statistics showed was more accurate, but A. steere, the CDC, and the IDSA all ignored it. You see, they don't want to admit they have been very wrong on so many things. Google "Tom Grier Lyme" and read his story and his explanations of testing. He is a scientist who had Lyme and multiple coinfections. It will open your eyes.
You also need to read some articles about the controversy over the CDC surveillance criteria, which was developed by Allen Steere while he was the primary consultant on the LymeRIX vaccine. He left out the two most Lyme specific and significant bands in the interpretation because he assumed everybody in Lyme country would be using his vaccine, and would show positIve on these two bands with or without Lyme. He didn't want false positives, and so he came up with an interpretation based on a number of Lyme patients in the NorthEast with joint issues who had only been sick for 1-4 months, excludimg those two most important bands.
Now why would he assume that someone sick for years with primarily neurologic symptoms in California, where it's a different tick and there is a much wider genetic variability of Borrelia, would show the same antibodies as his Connecticut patients with sore knees? Even Dr. Steere acknowledges that patients' WB results vary from one test to another.
If you want to nail someone for conflict of interest, please direct your criticism at Steere, who was poised to profit handsomely from the vaccine he was going to recommend as the pre-eminent authority on Lyme Disease. Note: the vaccine was pulled after numerous lawsuits saying that it caused Lyme-like symptoms in a significant percentage of people.
Also know that Dr Steere thought Lyme was caused by a virus for years until the spirochete was finally discovered, proving it was bacterial. He had been refusing to treat patients for years (don't want to unnecessarily use abx for a virus!), even when researchers at Stonybrook were having a fair amount of success treating Lyme patients with abx. He clearly has a history of disbelieving those who disagree with him, even when there is meaningful evidence. Both the woman who first brought her research on a new disease to Steere and the guy who discovered the spirochete have openly criticized Steere and his IDSA compatriots on definition, testing, and treatment.
This is the same guy who took taxpayer dollars from the CDC in 2008 to re-examine the WB interpretation that he had come up with (How's that for conflict of interest?). Get this: He would only admit patients into the study IF THEY ALREADY TESTED POSITIVE ACCORDING TO THE CDC CRITERIA! Then, they did biopsies on their rashes and verified that most of them did indeed have Lyme. Ergo, the interpretation is good. Hunh? That's absurd. That is the poster study for circular thinking. All it did was prove that there are extremely few false positives, which is actually contrary to what is happening out in the real world, where patients with positive test results are often told they don't have Lyme because it is too unlikely. What about all the patients who don't meet the criteria who actually do have Lyme? We are left to suffer, lose our jobs, savings, home, friends, even lives while we struggle to find a doctor who will treat us.
You say your clinic will treat even if someone does not test positive, but I really have to question how far out you'll go beyond the "standard." Only 4 bands? Three? Two?
I got neurologic Lyme overseas years ago. Clearly I have a different genetic strain than what most labs use here (B31, the shelter island strain known for causing arthritis.) And I have no muscle or joint pain or arthritis. I tested negative on an IFA so no WB was run. I also tested negative in my CSF. But at IGeneX, I produced two Borrelia specific bands on my IgM WB, although I was CDC negative. One of those bands has been identified by IGeneX as more common in patients with significant neurological symptoms.
Would you have diagnosed me with those results? BTW, I have nearly 80 symptoms on the detailed/specific symptom list for Lyme. I was hospitalized with numerous serious problems, and my internist told me to my face that I did not have Lyme, although they had absolutely no idea what was wrong with me. The ID doc refused to even see me. They told me it was a waste of money to get tested at IGeneX and to go see a LLMD. In reality, it saved my life. I am not sure what symptom would have killed me, but my bet was on the tachycardia, which was as high as 155.
You can see why we don't have much tolerance for someone who doesn't know what they're talking about who starts throwing around serious accusations and generalized opinions. Do your homework before you decide what your opinion is. Just as history is not kind to those doctors who persecuted the guy who came up with Germ theory, history will not be kind to those doctors who put their own careers and status ahead of good science and patients' well being.
And what about every other Lyme practitioner who prefers IGeneX? They are not all Nick Harris's sons. Have you considered that they prefer IgeneX because of better results? Instead of reading doctors' websites, why don't you contact IGeneX directly and ask them why they are different and why they claim to provide more advanced testing. Just because some doc in Seattle wants $345 for a phone call doesn't mean IGeneX is a scam.
You truly sound like someone who is just repeating the gossip that comes from higher up the pecking order in the world of medicine. If you really did your research, rather than caved to vague, unsubstantiated rumors, you would change your tune. Even better, read Pamela Weintraub's book, "Cure Unknown."
You might also spend some time reading the LymeMD's blog about labs. He has a lot to say about how varied the labs's results can be. He tells one story of sending 3 different vials from the same blood draw to three labs, and getting different results from each. And yet patients are denied treatment based on these tests??
Most labs don't even report the bands not used in the CDC criteria. IGeneX shows numerous bands and will call a result 'positive' if any two Lyme specific bands are positive. One major lab even offered up an alternative diagnostic criteria that they said their vast statistics showed was more accurate, but A. steere, the CDC, and the IDSA all ignored it. You see, they don't want to admit they have been very wrong on so many things. Google "Tom Grier Lyme" and read his story and his explanations of testing. He is a scientist who had Lyme and multiple coinfections. It will open your eyes.
You also need to read some articles about the controversy over the CDC surveillance criteria, which was developed by Allen Steere while he was the primary consultant on the LymeRIX vaccine. He left out the two most Lyme specific and significant bands in the interpretation because he assumed everybody in Lyme country would be using his vaccine, and would show positIve on these two bands with or without Lyme. He didn't want false positives, and so he came up with an interpretation based on a number of Lyme patients in the NorthEast with joint issues who had only been sick for 1-4 months, excludimg those two most important bands.
Now why would he assume that someone sick for years with primarily neurologic symptoms in California, where it's a different tick and there is a much wider genetic variability of Borrelia, would show the same antibodies as his Connecticut patients with sore knees? Even Dr. Steere acknowledges that patients' WB results vary from one test to another.
If you want to nail someone for conflict of interest, please direct your criticism at Steere, who was poised to profit handsomely from the vaccine he was going to recommend as the pre-eminent authority on Lyme Disease. Note: the vaccine was pulled after numerous lawsuits saying that it caused Lyme-like symptoms in a significant percentage of people.
Also know that Dr Steere thought Lyme was caused by a virus for years until the spirochete was finally discovered, proving it was bacterial. He had been refusing to treat patients for years (don't want to unnecessarily use abx for a virus!), even when researchers at Stonybrook were having a fair amount of success treating Lyme patients with abx. He clearly has a history of disbelieving those who disagree with him, even when there is meaningful evidence. Both the woman who first brought her research on a new disease to Steere and the guy who discovered the spirochete have openly criticized Steere and his IDSA compatriots on definition, testing, and treatment.
This is the same guy who took taxpayer dollars from the CDC in 2008 to re-examine the WB interpretation that he had come up with (How's that for conflict of interest?). Get this: He would only admit patients into the study IF THEY ALREADY TESTED POSITIVE ACCORDING TO THE CDC CRITERIA! Then, they did biopsies on their rashes and verified that most of them did indeed have Lyme. Ergo, the interpretation is good. Hunh? That's absurd. That is the poster study for circular thinking. All it did was prove that there are extremely few false positives, which is actually contrary to what is happening out in the real world, where patients with positive test results are often told they don't have Lyme because it is too unlikely. What about all the patients who don't meet the criteria who actually do have Lyme? We are left to suffer, lose our jobs, savings, home, friends, even lives while we struggle to find a doctor who will treat us.
You say your clinic will treat even if someone does not test positive, but I really have to question how far out you'll go beyond the "standard." Only 4 bands? Three? Two?
I got neurologic Lyme overseas years ago. Clearly I have a different genetic strain than what most labs use here (B31, the shelter island strain known for causing arthritis.) And I have no muscle or joint pain or arthritis. I tested negative on an IFA so no WB was run. I also tested negative in my CSF. But at IGeneX, I produced two Borrelia specific bands on my IgM WB, although I was CDC negative. One of those bands has been identified by IGeneX as more common in patients with significant neurological symptoms.
Would you have diagnosed me with those results? BTW, I have nearly 80 symptoms on the detailed/specific symptom list for Lyme. I was hospitalized with numerous serious problems, and my internist told me to my face that I did not have Lyme, although they had absolutely no idea what was wrong with me. The ID doc refused to even see me. They told me it was a waste of money to get tested at IGeneX and to go see a LLMD. In reality, it saved my life. I am not sure what symptom would have killed me, but my bet was on the tachycardia, which was as high as 155.
You can see why we don't have much tolerance for someone who doesn't know what they're talking about who starts throwing around serious accusations and generalized opinions. Do your homework before you decide what your opinion is. Just as history is not kind to those doctors who persecuted the guy who came up with Germ theory, history will not be kind to those doctors who put their own careers and status ahead of good science and patients' well being.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
