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Old 09-27-2007, 03:06 PM   #1
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About Ignex-I'm a little worried-Feeling please

Can't beleive A doctor would ok a private not FDA approved lab like igenex for lyme testing.

I'll give you both sides . ONE SIDE Igenex has been investigated by the department of health in California and New York several times for producing too many positive lyme results.

"New York State Health Department charged that Igenex's Lyme-disease tests had failed a series of experimental challenges .New York State officials sent normal blood samples to the Igenex lab, and received many incorrect positive results. "

Theres an article in fortune magazine March issue about igenex falsely diagnosing people with lyme ... it was focused on one man who they diagnosed with lyme, when instead he had a very serious disease.

The ALS foundation has received a lot of complaints about Lou gehrigs disease patients testing positive at Igenex for lyme ( and negative everywhere else) when in fact they had Lou gehrigs disease NOT lyme. .

THE other SIDE The governments approved testing does miss lyme . There is a well publicised case about a journalist Amy Tan i beleive is her name who tested negative or indeterminate for lyme with all lyme tests but igenex found her positive.... and she did have lyme and eventually got better.

IGENEX lyme testing is not recognized to be credible , by the government, most doctors and insurance companies but there is a lot of money and politics involved in getting tests approved. Who knows , maybe these test methods will be recognized someday. Obviously though they have a lot of false positives. But on the other side they may find lyme when noone else does.

Lyme may be a bigger problem than people think it is. The government is reveiwing the whole lyme issue and testing guidelines . There are flaws . Personally I don't think you can ever be sure if you have lyme or you don't. I would not hold any test as gospel

It's a very complicated issue , also complicating things are all of these fanatics who think they have lyme when they don't . The truth probably lies somewhere in the middle.

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Old 09-27-2007, 03:54 PM   #2
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Re: About Ignex-I'm a little worried-Feeling please

Hi Julie. I believe that IgeneX is a good lab for tick-borne illness testing. Many Lyme doctors use this lab for testing. Not everyone who is tested there tests positive.

I know they have been investigated in the past, but from what I understand everything came out fine. I believe the doctor who runs the lab had a family member who had Lyme disease.

Lyme disease is a very political disease. Part of the reason may be because insurance companies do not want to pay for long-term treatment. Lyme disease is the second fastest growing infectious disease after AIDS in the US and the number one vector-borne disease in the US, yet little is being done to educate the public and medical community.

I believe there were about 3000 cases of West Nile last year. Not to minimize the disease for those who had it, but I believe there are usually about 24,000 cases of Lyme reported each year and the true number is estimated to be ten times higher. So why isn't the government doing anything to educate people like they do regarding West Nile Virus?

 
Old 09-27-2007, 04:13 PM   #3
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Re: About Ignex-I'm a little worried-Feeling please

Good enough for me...I'm doing it...He will draw the blood next week for me to send....Will let you know the outcome....Hate to say this I hope its postive that way I know I'm not NUTS...

Oh Lyrcia is working for the numbness and burning pain. Low dose 25mg three times a day, so far I can take it....

Julie

 
Old 09-27-2007, 06:35 PM   #4
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Re: About Ignex-I'm a little worried-Feeling please

Julie, you are not nuts. Lyme disease is nuts. And trying to get treated for Lyme disease is nuts!

 
Old 09-28-2007, 01:26 PM   #5
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Re: About Ignex-I'm a little worried-Feeling please

Quote:
... it was focused on one man who they diagnosed with lyme, when instead he had a very serious disease.
Lyme isn't a very serious disease?!? Are you aware of the long-term consequences of untreated Lyme?

Quote:
complicating things are all of these fanatics who think they have lyme when they don't

Igenex is a highly credible lab. It was subjected to investigation, it passed and was found to be competent, and retained its accreditation. For the record it does produce negatives, including myself and several other cases that I know of personally.

Igenex is an accredited lab. I am not sure what you mean by it not being an "FDA approved lab". To the best of my knowledge, accreditation of laboratories does not fall under the jursdiction of the FDA. The FDA, the Food and Drug Administration, oversees those areas which its name implies as well as the actual laboratory tests conducted in various labs. Do you perhaps mean some of the tests, such as the Lyme Dot Assay, which was developed by Igenex? That was a very new test, and while it was not FDA approved last time I checked, if I'm not mistaken it was pending appoval, which takes time. Other labs also conduct tests that are not FDA approved or are pending approval.

As Ticker pointed out, there have been a great deal of politics involved in the diagnosis and treatment of Lyme, stemming primarily from the cost of care and coverage.
But if you are that concerned then why don't you just have an ELISA done at a local lab? If it comes back negative then you'll know you don't have Lyme disease, unlike all of us "fanatics" here?

Last edited by TINUVIEL; 09-28-2007 at 01:49 PM.

 
Old 09-28-2007, 03:08 PM   #6
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Re: About Ignex-I'm a little worried-Feeling please

Hi TINUVIEL Isn't this the lyme doctor who diagnosed you with lyme that Ticker reccomended to you after " conventional doctors and tests " said you didn't have lyme ? Who do you see now that he and his clinic is out of business ?

Jemsek is one of a small group of infectious disease specialists who believe there is a condition called "chronic Lyme disease" that can be debilitating for years after a deer tick bite. He and like-minded doctors believe such patients need antibiotics for months or years, much longer than the standard few weeks.
Establishment doctors in the Infectious Diseases Society of America and on the state medical board see things differently.

That's why Jemsek lost his fight in July 2006.

During a public hearing in Raleigh, witnesses testified that Jemsek misdiagnosed them with the tick-borne illness and treated them with intravenous antibiotics for many months without telling them the treatment exceeded the standard.

Many devoted patients said Jemsek was the only doctor who helped them.

The board concluded he had violated state law.

Board members allowed Jemsek to continue practicing but required Lyme disease patients to sign consent forms explaining they understood his treatment differs from that of most N.C. doctors.

That ruined his practice.

Insurance companies stopped reimbursing Jemsek for treatment of Lyme disease. Blue Cross and Blue Shield of North Carolina filed suit, asking him to repay hundreds of claims for Lyme disease treatments that were "not medically necessary."

Since then, Jemsek and his clinic have filed for bankruptcy. His five-bedroom house in Foxcroft is on the market for $2.5 million.

 
Old 09-28-2007, 06:30 PM   #7
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Re: About Ignex-I'm a little worried-Feeling please

Julie I had many doctors tell me this about Igenex...this was after years of them dosing me with UNECESSARY DRUGS...14 prescriptioins at once at one time..Them telling me that there was NO lyme disease where I lived. Them telling me live with what I have...And that the test for lyme at these certain main stream labs were right on...

I was dumb at the time and didn't now any different...Get to a Lyme doctor...One that specializes in Lyme. STOP listening to what these run of the mill doctors are saying to you...They get NO kick backs if you use Igenex...
BUT they do if they keep you going to the lab they refer you too...It is all very crazy....I KNEW when I was bit..I was sick within 2 days. I went to the ER and had one of the heads dug out. I was given ONE antibiotic...it took me 15 years to find ONE doctor to send my blood work to Igenex...(somewhere around that time frame) and you know what....IT DIDN'T COME BACK POSITIVE...

By the way if the one doctor that was mentioned here lived in a 2.5 million home GOOD FOR HIM...he saved lives and then got punished for misdiagnoisind ONE patient...oh my gosh what is wrong with this picture...

Wonder how many turned their backs on me that live in 2 millioin dollar homes..and wouldn't even give me a flippin antibiotic...boy that burns me. And it was ME that lost my mind, job, husband, BABY, family, friends, ect..ect...and you know what they didn't give a hoot!

anyway Julie ...hope you find some help soon. Igenex is still the best lab to go to.

Excuse me I am not yelling at anyone just venting...

Hugs to you all...


 
Old 09-28-2007, 06:35 PM   #8
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Re: About Ignex-I'm a little worried-Feeling please

p.s. For Julie and anyone else...Listening to a interview by one of the TOP lyme doctors...Lyme test are Not accurate for many reasons...but one of them is ....

The bacteria does not like oxygen..which is what is in your blood stream...They imbedded in tissue, muscle, bone, organs...ect...If you get a positive from a blood test your are pretty darn lucky...

this is why you NEED TO GO TO A SPECIALIST for Lyme...so they can go on your symptoms...

You can learn alot if you just let your fingers do the walking and reading through the internet...


 
Old 09-28-2007, 06:46 PM   #9
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Re: About Ignex-I'm a little worried-Feeling please

Hi driven88. Do you have Lyme disease?

I had heard that Dr. J's license was restricted after the hearing. I know he declared bankruptcy. He has not been the first or the last Lyme doctor to be investigated. I think it is terrible. He is an excellent, dedicated doctor and a good man. Doctors should have the ability to treat each case as needed.

Many insurance companies do not reimburse Lyme doctors or Lyme patients.

 
Old 09-29-2007, 03:46 AM   #10
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Re: About Ignex-I'm a little worried-Feeling please

Hi:

No my doctor did not say not to use Igenex. My friend sent this to me after I told her I was going there for blood work. She is in the medical field. I'm still going to get tested there next week.

My doctor has ran two lyme tests (Local labs) so far negative. The ID doctor ran another one last week with a different lab. He said if that one comes back negative then to send it off to Igenex.

At this moment they are trying to figure out what pill I can take, I'm working with a allergist, him and on monday my thyroid doctor as they found toxic goiders also.

I just got worried after reading that.

Juile

 
Old 09-29-2007, 06:14 AM   #11
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Re: About Ignex-I'm a little worried-Feeling please

Hi Mrs. Richardson....

I don't reemmber sorry but have you had any bands show up on your test yet? I was nieve also about all of this and looking over past test I had bands ...BUT I was told I didn't have lyme. ugh!

That is nice your friend is in the medical field...but possibly they haven't had to deal with lyme before...Your friend can learn something new from you and us

Let us know how your test comes out...okay! REMEMBER NO LYME TEST IS ACCURATE!! You can have a negative and STILL HAVE LYME~...this is why you must get to a lyme knowledgeable doctor....

hugs to you!


 
Old 09-29-2007, 08:22 PM   #12
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Re: About Ignex-I'm a little worried-Feeling please

Hi driven88,

Welcome to the board.


Quote:
Isn't this the lyme doctor who diagnosed you with lyme that Ticker reccomended to you after " conventional doctors and tests " said you didn't have lyme ?
I don't believe I ever made mention of "Conventional doctors and tests". I consider Dr. Jemsek to be just as "conventional" as every other doctor I saw, just better informed, a more competent diagnostician, and an eminently superior clinician.

As for the information on Dr. J, can you tell us the source of your information? The reason I ask is that elements of it are either incorrect or misleading. Not to be contentious, but I don't like to see false information posted about anyone, least of all one of the most knowledgable doctors in the Lyme community. So, just to set the record straight in a friendly way:

Quote:
The board concluded he had violated state law.
This information is incorrect. Had he violated state law he would not have been allowed to continue to practice. Dr. Jemsek was called to hearing before the N.C. medical board. The result of the hearing was that the board was unable to find grounds for revoking his medical liscence. The official ruling is called a suspension with stay, for a period of one year. That means that the suspension officially imposed was "stayed" or not enacted. He was allowed by the medical board to continue to practice, with the stipulation that treatment could no longer be prescribed beyond a 60 day period and an informed consent form had to be obtained from patients, now standard among many doctors who treat late stage disseminated Lyme. Restrictions would expire after a period of one year.

For the record, 5 patients whose cases were cited by the medical board are still his patients, and all of the 5 wrote letters on his behalf. Even NC medical board examiner, Art McCulloch, was quoted in the Charlotte Observer as conceding that Dr. Jemsek's protocols "could become the standard in five years, but for now patients need to know 'his practice is out of the ordinary.'

Quote:
That ruined his practice.
This information is also incorrect. The decision to close was based on two reasons, one being that the restrictions prevented him from providing adequate care to patients. It was the situation with the insurance company that left many patients, including hundreds of AIDS patients who rely on the Clinic, unable to pay for care.

The outcome of the lawsuit has not been decided. According to Dr. Jemsek's attourney, Michael F. Ruggio, Jemsek has filed a counter lawsuit for breach of contract, failure to pay for services rendered and engagement in unfair and deceptive trade practices.

Yes, sadly it is true that Dr. J has had to sell the house he built 20 years ago to pay attourney fees.

Quote:
Jemsek is one of a small group of infectious disease specialists who believe there is a condition called "chronic Lyme disease" that can be debilitating for years
While it may be true about controversy with the IDS, it is certainly more than a small group who "believes there is a condition called chronic Lyme disese".

Last edited by TINUVIEL; 09-29-2007 at 08:24 PM.

 
Old 09-30-2007, 04:36 AM   #13
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Re: About Ignex-I'm a little worried-Feeling please

Hi TINUVIEL . Thank you for the welcome. The article about Dr Jemsek dated September 7th was in the Charlotte Observer , the largest Newspaper in all of Carolina . . About you saying the article is not accurate , i guess you'd have to take it up with the newspaper .

The newspaper seems like a reputable source to me , it's writers have won like 6 pulitzer prizes .

I'm new to lyme , just trying to figure out what is real and what isn't. There seems to be two opposing views ftom my observations.

Hi Ticker Thank you. I don't know if i have lyme . Was looking for your story in the archives , what is your story , if you dont mind me asking ? ... or is there a post i can look up ? How long have you had lyme ? Thank you.

Last edited by driven88; 09-30-2007 at 04:42 AM.

 
Old 09-30-2007, 11:37 AM   #14
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Re: About Ignex-I'm a little worried-Feeling please

Hi driven88

Thank you for providing the source of your information. However, I have no interest in "taking it up with the newspaper". Unfortunately you seem to have misunderstood the purpose of my post, which was as I stated NOT to be contentious but simply to clarify. However if you are that concerned about the hearing you can obtain the full results of the hearing and actions taken from the NC medical board, it is public domain. This is a very close community here on the board, friendly and supportive and very welcoming to those who suspect tick-borne disease or who have been diagnosed and are looking for support in dealing with the rigors of both finding suitable treatment and healing. We certainly extend a hearty welcome to anyone who is legitimately here for these reasons.

I certainly hope I didn't make our board seem unfriendly. Why don't you tell us about yourself, driven88? Why exactly are you here? You mentioned that you didn't know if you have Lyme. Do you suspect Lyme? Have you checked with any doctors or had any testing? Have you had an erythema migrans? What kind of symptoms have you had? This community can be wonderfully helpful to those who are genuinely here to seek support in their healing quest.

Yes, there has been controversy over the testing and treatment of Lyme disease, at times seemingly with patients and certain groups of doctors on one side and other medical officials on the other. If you are truly interested in educating yourself you might want to try ILADS and also there is a book often recommended on the site here, 'Everything You Need To Know About Lyme Disease and Other Tick-Borne Diseases' by Karen Vanderhoof-Forschner. Many of us have found it to be informative and helpful both in content and in that it is written from the patient's perspective.

Last edited by TINUVIEL; 09-30-2007 at 12:33 PM.

 
Old 09-30-2007, 01:29 PM   #15
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Re: About Ignex-I'm a little worried-Feeling please

Hi... I just wanted to add my 2 cents in... I have had lyme for a few years now.. and have SUFFERED..like the rest of the people on this board.. Iam a 29 year old female and lyme had ruined my life... not counting all the doctors that wouldnt treat me properly.. I had ALOT of lyme test done over the years and at all different labs... I have always tested postive.. I also tested positive with Igenex.. ( I had 2 extra bands that were positive through igenex, which the other labs didnt even test for).. I finally found a LLMD willing to treat me by my symptoms only at first before we even sent my blood out.. Thank God for him... If I didnt see my LLMD and left it up to my 20+ doctors to get me better, I wouldnt be where Iam today.. These doctors and labs should walk just one day in our shoes.. how quick things in the lyme world would change.. Anyway LLMD's and IGENEX are the BEST !!! Im living proof of that !!!!!

 
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