posted
"Paranoia strikes deep, into your heart it will creep, it starts when you're always afraid . . ."
I keep hearing this song and it's lyrics in movies and TV and it always strikes me as very apropo of so much that is going on, and now it strikes me in the CLD context.
We all know, don't we, that CLD is big business, full of charlatans, quacks, snake oil salesmen, selling improbable hope to desperate people, and that it is full of greedy doctors of a legitimate nature who feel that they are treating the "undesirables" people who some consider "wacko" and these doctors can thus charge whatever they want because "Big Pharma" and "Big Insurance" won't cover treatment of these "wacko undesirables"?
And many who have failed to be diagnosed clinically have put their faith in a few labs who claim to have more accurate tests than the routine tests that turn up negatives, especially for Chronic Lyme.
But there is undeniably a profit motive for these labs to carve out a niche in this very lucrative CLD industry, a niche providing positive results for those who have convinced themselves that they have Lyme. And despite being pressured to submitting to peer reviewed studies of their process they resist; what are we skeptics left to think besides the worse?
What if these labs are preaching to the choir, telling true believers what they want to hear? For a big profit?
What if they (these labs) are part of the conspiracy, the conspiracy that we all, or so many of us, believe the establishment is part of, to either make money or to save money (is there a difference?) using the phenom of Lyme as a money making vehicle?
But I suspect bringing these questions up is like questioning a person's belief in God and asking them for proof that there is a God: they will usually tell you that it is a "leap of faith" that you just gotta "believe" because there is no real evidence of God that could be arrived at through the scientific method of proof.
But my health is not subject to a question of faith.
Here is a link to an article and below it are a few quotes pulled from it: it is important to always keep an open mind to all possibilities -- truth or dare or fraud.
"Where is a validation study of the Mdlabs "spirochetal load" test?
Something describing the methods and technique, statistical data supporting cut off points etc.
Same with a WB for Babesia done there.
Could all these tests be perfectly valid?
Absolutely.
Has ANY of these labs EVER produced studies showing that?
NO.
And Harris will talk his way around issues like that.
So there is NO BASIS for the BELIEF of Lyme patients and "llmds" that these tests and these labs are "good."
The only basis for this apparently religious FAITH is the self-fulfilling prophecy standard.
And that is fine for a religion but not fine for science medicine or medical testing. Sorry.
The figures cited in the article are DISTURBING. If IGenex is really raking in $20-$30 MILLION DOLLARS A YEAR, well, immediately that shows that Nick Harris has 20-30 million reasons to advocate for his testing.
It also makes one wonder--WHY wouldn't Harris PROVE the validity of his testing??? If he can do it, why allow the stigma of uncertainty hover over the lab?"
-- --
Moving to another article in the NYT, I pull a disturbing quote just below the link, one that raises more questions than it answers:
"On the Western blot tests, however, IGeneX sent back positive results, while the Quest testing came back negative.
Although his doctor started him on antibiotics to treat the possible infection, Mr. Courcier was encouraged by a colleague to visit Dr. Gary Wormser, chief of the division of infectious diseases at New York Medical College in Valhalla, for another opinion. Dr. Wormser repeated the Western blot test and told him in June that he did not have Lyme disease.
At first, Mr. Courcier did not know whom to trust, and he remained on the antibiotics therapy prescribed by his doctor in Texas. But by July he concluded that he did not have Lyme disease and stopped taking the antibiotics, which he said were only making him feel worse.
"It's been a hell of an emotional roller coaster," said Mr. Courcier, who conceded that it was a comfort for a while to have a definite explanation for the pain and exhaustion that continue to plague him."
-- --
Was Mr. C. herxing, is that why he felt worse? Wormser, does that name ring a bell? Of course it does, he's with the CDC.
--
Again, it is "buyer beware" of being sold the truth that you wish to hear, of buying a self-fulling prophecy, of people telling you what you want to hear, as long as it's for a profit.
I have no idea if these tests are legitimate or not, but I have become skeptical of everything having to do with CLD that does not have a solid scientific, peer reviewed study behind it, and I see no reason why these labs hesitate to submit to legitimate scientific scrutiny of their methods of arriving at such positive results.
Are they financially capitalising on the CLD phenomenon or are they legit?
That is the question, yet none of us have the answer, we are only guessing or hoping, still grasping at straws.
Good, legitimate science, though, could help answer some of our questions.
[ 03-04-2011, 04:49 AM: Message edited by: rajon ]
Posts: 81 | From Rhode Island | Registered: Nov 2010
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-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Right there with those who suscribe to the "Witty One-liner" technique of non-debate. LoL
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TerryK
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Member # 8552
posted
If I had followed conventional "wisdom", I'd probably be dead by now like my sister who died last October with the exact same symptoms that I have. She was 15 months older than I am and had been bedridden for 10+ years.
I went from being in horrific overall body pain for over 10 years and a huge list of other symptoms to a reduction of 70% of my pain with many symptoms disappearing all together after several years of lyme and co-infection treatment.
I had many borrelia specific bands but was not CDC positive and had a negative PCR.
I believe that I have lyme but I really don't care if it is lyme or some other infection. My life is worth living again thanks to treatment recieved from my LLMD!!
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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posted
rajon I have no idea if these tests are legitimate or not, but I have become skeptical of everything having to do with CLD that does not have a solid scientific, peer reviewed study behind it, and I see no reason why these labs hesitate to submit to legitimate scientific scrutiny of their methods of arriving at such positive results.
Igenex are a certified lab and are medicare approved.
At the 2005 ILADS conference, Jyotsna Shah, PhD,CCLD, MBA, said that IGeneX scored better than 95% in the stringent NY proficiency tests from 2001-2005. Out of 58 labs, only IGeneX had a perfect score on Western blot proficiency. In recent tests for 327 patients, 238 were identified as positive by IGeneX criteria. Only 112 would have been correctly diagnosed using the CDC surveillance criteria.
I have a lot of research on Igenex. It took me several years of research after I got my IgeneX positive result before I was convinced that I should go for CLD treatment.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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t9im
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posted
Ask yourself the basic question are those questioning the results doing their work for free?
My daugher's Igenex has been negative 3 times. You need to do research, understand the reasoning behind the Dearborn agreement.
I'm wondering if you are a lyme patient or actually have an ultermotive here.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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bcb1200
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Member # 25745
posted
Well..I had a negative ELISA from my ENT, but was CDC positive on Igenex. I have since tested CDC positive on Quest. So IGENEX was correct for me.
And I know that they use a much higher quality gel for their western blots, (think HD TV versus standard Def.)
So my vote is for IGENEX.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
IgeneX has been vetted well by many independent bodies, they pass all the relevant certification and a percentage of their accuracy has to do with simply not throwing away "irrelevant" data, as the CDC test does. Its not using an unproven methodology or anything.
Back when Wormser, Steer and the like were tasked with coming up with IDSA and CDC diagnostic guidelines, they were approached by Novartis, makers of the Lymerix vaccine, to ensure that all Lyme tests wouldn't come up positive on those that had Lymerix. This conflict of interest is what led to today's foul up; that group of doctors set the guidelines as to ignore the pivotal bands that Lymerix would induce a positive response. Later, Lymerix was taken off the market. Why? Because it gave people Lyme! Yet, due to hubris in a handful of IDSA doctors they refused to admit they were bribed by a pharmaceutical company to make a less accurate test, the standard remained. This is what Blumenthal (now Senator, formerly Attorney General of CT) concluded with his conflict of interest ruling.
I know there are a lot of charlatans and some legit practitioners who I feel are taking advantage of desperate patients, but IgeneX has been proven to be on pretty solid footing in everything from official CLIA certification to examination of the assays.
Now, I do believe that IgeneX and every other "advanced, specialty" lab has two choices - if they have diagnostics they feel are ready and stable, they should take insurance. If they are still in the experimental phase, I think they should be done for free with the understanding that the results and methodology will be used in research data. Much like LLMDs, I don't think it is ethical to have a "special", better healthcare practice or technology, only allowing those with the money to pay out of pocket to do so. Its an issue of supply and demand - LLMDs and some of these specialty labs offer services that you can't just find anywhere and thus are free to charge a premium by market forces. Look, I know that no doctor' WANTS to deal with insurance companies - it takes me 6 weeks or longer to get payments, they pay a fixed fee schedule nomatter what you bill etc... but I believe that if the LLMD/ILADS way is really the right way to help so many people, it isn't right to only admit the faithful with a lot of money. This is one reason that LLMDs are seen as unscrupulous, especially when they are often providing experimental treatments for full price, sometimes with methodologies that haven't been properly vetted. Nobody should be charging thousands of dollars for "muscle testing" diagnostics for instance, but yet... some do.
There are those on both "sides" if you will that make choices that are bad for science and patient care out of personal benefit or hubris. Just because LLMDs and these labs are often doing good work doesn't mean that every decision they make should be lauded as in the benefit of the patient or the community as a whole. There is room for improvement.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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Hambone
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posted
I had a western blot done at Mayo with reactive bands 41 and 58.
I had a western blot done through Quest with reactive bands 41 and 58.
I had a western blot done through IgeneX with reactive bands 41, 58 AND 31, 34.
If IGeneX was a scam, how is it they picked up the 58 band like the other two tests did? 41 is a given...but how do you explain 58?
It is because of them I got a proper diagnosis, because Mayo and Quest don't test for 31 and 34.
Posts: 1142 | From South | Registered: Dec 2010
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feelfit
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posted
blackstone. thank you for saying so well, my thoughts exactly. Unfortunately, I do not possess the brain power to put my thoughts into understandable words, as you have. bravo.
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seekhelp
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posted
As many here probably gather, I'm not a person who takes the Igenex tests w/blind faith. I'm very suspicious by nature and can certainly see where a lab like this can profit crazily from manipulation.
I'm not 100% sure if they're right or wrong, BUT I do want to say it appears your intentions here are to cause trouble and not get medical help. Kind of odd for someone to be sick spending all your time doing this stuff.
Convince yourself...don't take treatment and see if you're happy how you feel. If so, maybe you don't have TBIs. Not everyone does honestly. I don't even know what I deal with, but dying and living a miserable life 24/7 isn't an option so I'm not going to stop trying.
I agree with Blackstone's comments as well.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hambone
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posted
quote:Originally posted by t9im: My daugher's Igenex has been negative 3 times.
This made me think of Loripink here, whose Igenex was negative.
And I know of someone else on another forum whose Igenex was negative, but she treated anyway and was better in 3 years.
Posts: 1142 | From South | Registered: Dec 2010
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TerryK
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posted
Blackstone - you said lymerix was taken off the market because it gave people Lyme. You probably already know this but to clear up for others - lymerix was not capable of transmitting borrelia because it was not made with a live bacteria. http://www.rxlist.com/lymerix-drug.htm
The reaction to the vaccine appears to be an autoimmune reaction.
Steere and some of the other core IDSA lyme guideline members along with some CDC employees have patents for testing of lyme disease. BIG conflict of interest by both the CDC and IDSA guideline writers.
I don't want to get too far off the subject but I want to quickly address the reason why many LLMD's don't accept insurance. Many insurance companies will not accept doctors as a provider if they treat chronic lyme disease. I know of at least 2 who went bankrupt when the insurance comapny suddenly refused to pay them for services rendered.
In addition, insurance companies appear to be instigators of quite a number of medical board complaints. Very time consuming and expensive for a doctor to deal with not to mention the threat of losing ones livelihood.
If LLMD's sign a contract with insurance companies they are not free to treat the way they want. IDSA guidelines prevail. My LLMD does not take insurance but I am allowed to bill my insurance company so I get about 70% of the bill paid EXCEPT for phone consults which are not covered by any insurance company that I've ever had. My meds are covered the same as they would be from any other doctor.
The IGeneX Western BIot was designed to be effective in all stages of Lyme Disease, not just early Lyme. The current Western Blot, in most clinical laboratories, was designed for early Lyme Disease. The publications referring to this generic blot studied patients with Lyme disease within the first few months after a tick bite and an EM rash.
IGeneX designed the blots differently, based upon the principles discussed in the publication by Ma et al. J Clin Microbiol,1992, 30:3 70�79 (see graph below). Pedigreed samples were obtained from Yale, University of Connecticut (UCON), and a Hospital in Old Lyme, CT. These samples came from patients with a physician diagnosed EM rash and symptoms of active Lyme Disease. The difference from the CDC studies was that these patients were not just early Lyme Disease < 5 months, but also mid-Lyme > 5 months to 1 year and late Lyme disease > 1 year.
In addition, instead of using just one strain of bacteria, two strains (B 31 and 297) are used to make IGeneX Western Blot strips. This allowed IGeneX to have alI the Lyme antigens more or less equally represented.
IGeneX also uses a 12.5% polyacrylamide gel to get better separation of the important 31 kDa to 39 kDa antigens. Dressler et al. JI., 1993, 167:392�400 only used a 10% gel and had poor separation of the 31 to 39 kDa antigens. That publication was a cornerstone of the CDC surveillance criteria published in MMWR 1995, 44:590�591.
In summary the IGeneX Western BIot for Lyme Disease has:
High sensitivity in aIl phases of disease. Ability to detect Lyme antibodies in aIl parts of the US.
Ability to detect late Lyme due to the presence of 31kDa and 34 kDa antigens.
Ability to detect immunization by European strains of Borrelia due to high uniform antigen concentration.
The IGX Western Blots can accomplish this due to the relatively equivalent amount of each unique antigen used in our strips. This is done by harvesting each cell line at an optimum phase.
The IGX Western Blots have been evaluated and have reactivity against various B. burgdorferi strains including: European strains B. afzelli and B gaiinii; the Japanese strain of B. japonica; and the sub-strains of B. burgdorferi from Colorado, Missouri and Texas.
The high amount of antigen to OspA-31kDa and 34kDa gives the IGX Western Blots the ability to detect patients with persistent/recurrent (chronic) symptoms of Lyme Disease.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Terry - it appears during my editing I erroneously left out "symptoms", as was my intent. Yes, its true the vaccine is not made of active live Bb and the nature of the reaction was inflammatory and, though not well understood, is considered to be autoimmune. The symptom profile of course, was very similar to Lyme itself.
As far as insurance authorizations are concerned, I cannot speak for every physician, but from my understanding of the system merely treating Lyme, even by ILADS guideline, wouldn't impair a doctor (at least in my state). Insurance companies pay based on Diagnosis (ICD-9) and procedure (CPT) codes. If there is a code for it, whatever it is, the doctor agrees when taking insurance that they will agree to the allowable benefit for said code.
I'd have to know more about the particular cases, but insurance companies routinely refuse to pay physicians of ANY type, regardless of controversy or specialty. They'll find something wrong with the paperwork, the way the claim was filed, the CPT code you used as related to the ICD-9 code etc... you appeal, and you wait. This is one reason that I and many of the health care providers I know (mostly physicians) would welcome a correctly built, ground up universal healthcare system, to remove these middlemen and the many-headed hydra of greedy insurance companies that make life difficult for both doctors and patients.
That said, as far as complaints are concerned, I'd have to know the context. My experiences with many LLMDs is that, since they have people that pay cash, they don't deal with the "world" of insurance most doctors do. For instance, charging $300 or more for an office visit that would at best be considered level 2, maybe warranting a quarter of that. If a LLMD tried their "normal" billing on an insurance company, after awhile it would look like an attempt to defraud the company, especially if they then ramped up every office visit to Level 5 without clear documentation of the procedures required for such. Now, there may be some procedures that they wouldn't be able to bill for, those especially alternative-experimental variants that don't have CPT codes, but you'd be surprised what is available - I know an anesthesiologist MD who practices homeopathic medicine as well (including an energy-medicine diagnostic) and accepts insurance. So long as they use the proper codes and bill accordingly, there are many extra-normal medical procedures that insurance companies will pay for. Now, they can most certainly refuse to pay for certain things on the grounds that it isn't needed and thus you have to appeal, but that is common to the entire medical profession these days, sadly.
Insurance companies are difficult to deal with for any physician, but even if we look at it from the patient-insurance side where you and I are lucky enough to get reimbursed to some extent, it proves that the procedures are not contested. I feel that, by using the same sort of adaptation that many other physicians do, LLMDs could take insurance. Yes, it is additional annoyance, time and money. No, its not as profitable. However, LLMDs as I said have rare, for the moment, knowledge and thus it isn't simply like going from an internist or dermatologist who doesn't accept your insurance to one that does with generally the same level of care. Thus, ethical questions are raised and on average I don't buy the idea that "Insurance companies won't LET me treat" as much as "Insurance companies won't PAY me as much as I'd like to treat". Of course, every situation is different and I'm sure there have been a handful of cases where so many things aligned "wrong" to create issues for a given LLMD, but I don't think it is correct for the vast majority of the profession to erect a financial barrier to care, especially while they are trying to fight for credibility in the medical field.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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posted
I don't think it is worth answering this kind of post. The answers can be found in the archives, ad nauseum.
If the person who started this thread has doubts about this or any other lab, they are welcome to omit testing and just go with their own guesswork. The next question will be doubts about clinical diagnosis.
Which leaves you with what?
Reading tea leaves? Consulting goat entrails?
And what is the motivation of those who produce tests that have many false negatives?
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by t9im: Ask yourself the basic question are those questioning the results doing their work for free?
-I have no problem with people making honest money. Investigative journalists get paid too, I guess.
My daugher's Igenex has been negative 3 times. You need to do research, understand the reasoning behind the Dearborn agreement.
I'm wondering if you are a lyme patient or actually have an ultermotive here.
-My motive is to ask questions and try to find answers and to not jump to conclusions nor take anything at face value if doubts have been raised. If I'm going to spend my money for expensive tests I'd like to understand them and be sure that they are reliable and the firm is totally on the up and up.
-- --
Thanks for pointing me towards the Dearborn Agreement or conference. But I searched and could not find a good link to it that was clear and readable.
Do you know of one?
The testing is one of the biggest area's of controversy in the CDL industry and it does give me pause, many LLMD's only use IG test results as guidelines. A clinical diagnoses is still the one most relied upon.
I'd like to be able to trust the IG tests but the controversy around it remains unresolved to me.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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Camp Other
Unregistered
posted
rajon,
I didn't see your post until now.
I think it's fair to be a skeptic and question everything, and learn what you can. Just know that the testing issue is a sensitive one for a lot of people and has caused much grief in getting a proper diagnosis.
So far as I can see, others here have given a pretty good review of the testing situation as Lyme patients see it - referring to TerryK's and Blackstone's comments. If those aren't relevant enough for you to support Igenex testing, then I suggest doing more of your own research on Lyme disease and serological testing. You might want to include David Volkman to your list and look at the latest research from Europe - although they do have different immunoblots, they have issues with accurate testing, too.
Even members of the IDSA themselves have complained early detection of the presence of Lyme disease in ELISA testing is not good enough because patients often do not produce antibodies until several weeks after a tick bite and infection. And some people seem to never mount a significant response in these tests.
Indirect detection has its downside. Which is depressing, because perhaps a lot of us who are on this forum right now may otherwise not be here if our infections had been caught and treated early.
Here's a question for you, rajon:
What kind of profit margins are you seeing for other testing facilities?
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Camp Other
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posted
Ah, rajon, see you responded in the middle of composing my recent response...
I'll put something together for you in a little bit - in the meantime, someone else may respond to your questions and comments.
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Camp Other
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posted
rajon,
I'm going to be posting some links here piecemeal, as I do not wish to overwhelm, and would like feedback on what *level* of information you seek.
Are you looking more for a Lyme-patient summary of Dearborn issues?
If you want more specifics, it will take me a while to trawl through my citations list. The problem with these links is they do not include data on C6 ELISA or newer vlsE test.
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posted
Thanks Blackstone for your thorough and thoughtful response(s).
And thanks TerryK for your information. It will take me a while to read through the links to information that you provided. But I will get it done.
Seekhelp, I think you have the right attitude, being skeptical, and we share that trait.
CampOther,thanks, there is a lot of information in your post that I will look into.
I didn't write the investigative journalism pieces just referenced them, so I did not question the labs income, the author did. Over 5 years IgX has taken in over 100 million dollars and that seemed to significant to the author in light of the controversy.
What I would like to know is if this question, asked by the author, was ever adequately answered:
"It also makes one wonder--WHY wouldn't Harris {IGX} PROVE the validity of his testing??? If he can do it, why allow the stigma of uncertainty hover over the lab?"
I would think it has been laid to rest since the article appeared in 2005, more than adequate time to answer the question raised in the article. Yet I have not found it yet using Google.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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t9im
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posted
Maybe you should question his motive, not IGenex's.
This is from memory not direct quotes.
Dearborn was the conference where the CDC set the serological 2 tier lyme test. The elisa screening and then the WB confirming. The WB uses the european strain of LB and excludes 2 LB specific bands.
This was orchestrated by Alan Steere (Yale research labs). He already had the FDA approve the WB 4 months before for the vaccine trials.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
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Member # 25489
posted
Also use quest of lab corp but if you do request the band readings in advance.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Those are only up through 2003 and require updating.
From Ingenex's web site:
"Based on our tracking, as well as input from our client physicians and our clinical consultant, the initial Panel to order for Lyme disease is the IGeneX Panel 6050. This panel includes the IFA, IgM and IgG Western Blots and PCRs for Borrelia burgdorferi. The IFA is a general Lyme disease screen. The Western Blots are to determine which antibodies the patient is making. The Western Blot is 96% specific. Since some patients do not make antibodies, the Lyme Whole Blood PCR for DNA (#456) and the Lyme Serum PCR for DNA (#453) is included.
The Complete Initial Lyme Panel includes IFA, IgG and IgM Western Blots and PCR (whole blood and serum):
The Initial Lyme Panel includes IgG and IgM Western Blots and PCR (whole blood and serum):
Panel 5010** #188, #189 & #456, and #453
(IGeneX performs a courtesy PCR on whole blood in the above panels)
The follow-up test for Lyme disease, if the above is negative, is the Lyme Dot Blot/PCR Panel - #875. This panel looks for pieces of the bacteria in urine as well as DNA of B. burgdorferi in the urine. Most physicians use an antibiotic challenge to make the test more sensitive. The antibiotic protocol, as well as the general instructions can be found in the urine testing kit available from the laboratory. You may also call IGeneX for a copy of the protocol.
The combination of all of the above tests provides higher than 90% sensitivity and better than 95% specificity. Remember that Lyme disease is a clinical diagnosis and testing can support your clinical presentation."
When you have finished your assignment - if you choose to accept it =) - feel free to ask more questions. On my end, I'll try to find you more on Dearborn that's coherent, and pointers to more recent testing information (including C6 and vlsE tests).
ELISA has not been completely discredited, and what Lyme disease should be is a clinical diagnosis with tests being supportive information because of the unreliable nature of them. Even the CDC states on its own site that its surveillance case definition should not be used for a clinical diagnosis of disease.
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sparkle7
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posted
Thank you for all of this everyone. I don't think it's wrong to stir the pot & ask questions. I'm learning alot from reading this!
I couldn't afford to keep getting tested & retested. My Western Blot was considered negative by NY State standards. I don't recall if it was IgeneX. All my records are in storage at the moment.
My doctor gave me a clinical diagnosis. I treated with abx for 9 months and didn't feel any different. I only got worse from abx side effects. I decided to treat myself with herbs & supplements.
At some point in the future, I may want to get back into it but I have mixed opinions about the "experts" here in Lymeworld. I have seen people get well from alternative treatments & others get worse from taking large doses of antibiotics and vise versa. So, in any case - it seems to me that there are no guarantees.
I appreciate the discussion. I'm glad rajon brought it up even if he's a bit caustic in tone. I can understand why people may feel frustrated.
I posted here about a huge settlement that happened when a watchdog group asked questions about a particular Quest Lab test. I'll see if I can locate it. It is important to ask questions! Many tests are not accurate. I don't know enough about IgeneX to say.
There's also a new lab called Spiro Stat. I have no idea how accurate they are, either.
Haley
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Member # 22008
posted
I think your skepticism is healthy.
I know Dr. H personally and he is a good person. These people would not risk going to jail for this. If they created false positives that would be against the law. I have had positives from lab corp. and not from Igenex.
It was Igenix that I identified that I have very high numbers for RMSF and Ehrlichia. I am so grateful for this test result as it is one of the keys to my treatment.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Well,I'm glad that more people than I are getting something out of this stimulating discussion. I think it is too important to stay passive and accept the status quo without raising questions. As Sparkle put it, stirring the pot sometimes is a good thing and keeps things cooking evenly and prevents stuff from sticking to the bottom. I do love to cook.
I guess some people misinterpret my writing, but as far as "wacko undesirables" go, that is how many people view us, and I was merely extrapolating that onto some docs, whom I imagine do view us that way in an attempt to justify to themselves their fees, that range from $950 to around $2000 for an initial consultation for some LLMDs.
I'm proud to be both a "wacko undesirable" and a "difficult patient."
I thank everyone for all the information, and I will be wading through it all tomorrow.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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seekhelp
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Member # 15067
posted
Wow, $2,000 for a consult? OMG. The $950 alone irked me to no end. OUCH OUCH OUCH.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
rajon said,
"As Sparkle put it, stirring the pot sometimes is a good thing and keeps things cooking evenly and prevents stuff from sticking to the bottom. I do love to cook."
Agreed. I love to cook, too. What kind of cuisine do you like cooking? Any favorite dishes?
seekhelp said,
"Wow, $2,000 for a consult? OMG. The $950 alone irked me to no end. OUCH OUCH OUCH."
I've heard of that, and I think I might know who that is. Not 100% sure. Regardless, I *do* think it is not ethical to charge so much to patients who are already in a vulnerable position, especially when other doctors who are not taking insurance are not charging that high and are offering the same service of often equal or better quality.
The argument has been made that doctors need to charge more for legal support. That does lead to my questioning about why it is not every doctor I know has the same high rate and why not every doctor is involved in such battles. Perhaps some of it has to do with specific state laws where they are practicing.
With the rise in tick population and longer breeding cycles due to climate change, right now I'm afraid there will only be more and more cases - even acute ones - and fewer doctors who are trained to recognize and treat them properly. If the trend continues, can you imagine the waiting list for LLMDs of the future?
I would like to see more effort put towards research into persistence and coinfections overall - if there is enough high level evidence presented for their role in chronic illness, then it will become clear that it is unethical and unconscionable not to treat people for such conditions. With strong evidence, all doctors will be treating patients with longer courses of antibiotics until something better comes along.
And I don't really think this sort of change in practice will put LLMDs out of business - if anything, with strong evidence on their side, they will continue to be the go-to guys and be asked to speak at many conferences and events - perhaps even to write books about the lives they've changed and professional risks they've taken.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
If you ask me... there's something systemic going on with Lyme & related illnesses.
None of this sort of thing went on with AIDS. People with AIDS, maybe, were isolated or had prejudice against them to begin with but they weren't considered "wacko undesirables" or malingerers with drug seeking behavior.
I not trying to compare the various suffering & who is worse but look at the whole picture. Can you imagine cancer patients being treated like this? or people with heart disease, diabetes, etc.? There's something that is not right about it. From diagnosis to treatment to disability claims to public awareness to media representation to insurance to doctor's behavior, etc...
Then, the whole issue about testing & the CDC, IDSA... It's disgusting. There's something really wrong with this picture.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I don't think there is another disease out there that is treated with such reckless disregard and contempt..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
black - Good to see you posting again.
black wrote Thus, ethical questions are raised and on average I don't buy the idea that "Insurance companies won't LET me treat" as much as "Insurance companies won't PAY me as much as I'd like to treat".
The doctor that I see has State laws that protect him. The State that I live in does not have a single LLMD thanks to Kaiser. They were involved in bringing one of the first LLMD's in our State to the attention of the medical board. He was told if he continues to treat chronic lyme disease they will pursue trying to remove his license. Kaiser has effectively taken away our ability to have LLMD's in my State.
Had he not been in the Kaiser network, I doubt he would have been called before the medical board and threatened. Many try to fly under the radar because insurance companies are behind a number of LLMD's being brought to the attention of medical boards.
I've heard of 2 LLMD's that accepted insurance and then when they got reprimanded by the medical board the insurance company refused to pay for past treatments and are suing to get past payments returned. The doc was left holding the bag and had to go bankrupt.
Many opt out of medicare because medicare does investigate doctors that they think are treating "unethically". Many insurance companies base their rulings on medicare rulings.
Insurance company persecution of LLMD's is real. While LLMD's may be able to work around some of the insurance company billing issues with appropriate codes one has to be very careful about this so as not to be charged with fraud.
I've been keeping track of how many LLMD's have had lyme disease themselves and there are many. I believe this is one reason they treat chronic lyme patients. I don't know about other LLMD's but when I looked up the standard charges in the State where my LLMD practices they were not out of line for a specialist. I also know that he spends a lot more time with me in the office and out of the office than any of my other doctors.
I'm not saying that all LLMD's are above board anymore than all doctors are but I think the majority are in it to help patients get better while at the same time making a living. There are a lot of other specialties where one could make as much money where they won't be jeered by their collegues or harrassed by medical boards, insurance companies etc. AND where the treatments are not nearly as difficult and uncertain.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Terry!
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