posted
I am taking my 2 year old to see the doctor in CT. I took a tick off of him and it was positive for Ehrlichia. Hope to have caught it early. Hope to stop it with antibiotics and happy to see a doctor who i know will treat him correctly.
On the flip side, I have a four old who has been sick with other health issues and for him we go to an infectious disease doctor. She has been so helpful with his issues, which are completely separate from my 2 year old. His symptoms are different and are not lyme. But she has been a respected medical professional for us for the past few years for my 4 year old and his issues. And for that i am thankful.
However, on a recent visit with the infectious disease doctor for my four year old, my husband mentioned what was going on with my 2 year old. He only mentioned Ehrlichia and how we had the tick tested by igenex. She informed us that the lab was "quackery". She told us that she doesn't believe these labs that are not FDA approved. And some of these labs will put a positive Lymes diagnosis on every tick. She also asked me that if the lab was so great, why didn't they tell me what strain of ehrlichia was in the tick.
I am new to this whole process and my knowledge is limited in lymes. I had no rebuttal. I know igenex is not quackory. What do you say to naysayer's? Why is igenex not an FDA approved lab?
Yes, i respect this doctor for the fabulous works she has done with my four year old who was very sick himself. But it was something other than lymes. But i was very upset about this conversation we had about lymes.
She told me if it was her child, she would just wait and see. I obviously am not going to wait and see but the conversation was so upsetting, i can't get it out of my head.
I am not listening to her on this topic. I am not bringing it up again to her and i am not going to tell her about my visit with the ped dr in CT.
But quackery? Come on?
But after my long story and venting, i guess my only question is about Igenex. Why is igenex not FDA approved? Are there other labs as accurate as Igenex that are FDA approved?
My hope is that everyone in the medical community will open their eyes an all become LLMD.
Posts: 6 | From NJ | Registered: May 2009
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Keebler
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posted
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I know you say this doctor has helped your other child but if she is so ignorant about this matter, I would find it hard to trust her.
Her quick response and most unfortunate (and erroneous) label say a lot about her, sadly.
The politics involved in all this are incredible. Igenex is one of the top labs in the world with testing far more advanced than most regular labs.
I'm not sure the FDA is the agency that certifies labs. Medicare pays for tests at Igenex. That should say something.
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[ 06-02-2009, 11:13 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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The laboratory is CLIA-certified, inspected by the Department of Health and Human Services for Medicare testing with a CMA license (Centers for Medicare & Medicaid Services).
We are also licensed in those states with special requirements (California, Florida, Maryland, New York, and Pennsylvania). All other states accept CMS licensure.
Personnel include MDs, PhDs, and California licensed and nationally certified clinical laboratory scientists (medical technologists); research, accounting, and marketing staffs; and client service specialists . . . .
See the QA Package for description of our certifications, validation protocols, and quality assurance practices. Q & A: http://igenex.com/Website/
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[ 06-02-2009, 11:10 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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And, about the strain of Ehrlichia, that is probably on the test result. It may say HME or HGE (human monocytic or human granular - something).
It matters little to your other child's doctor (the ID doctor) as to what kind of ehrlichia, however. If the tick was infected and your child was bitten, treatment can save him a life-time of problems - it may even save his life.
You are very lucky to have another LLMD. It's so outrageous when the IDSA doctors are ignorant in these matters. She could cause much pain and suffering to a lot of children.
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[ 06-01-2009, 07:10 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You know, I don't really get some of the testing issues myself. It seems as though Igenix was pretty thoroughly investigated and passed inspections with flying colors.
It's a little strange when ELISA tests and the like are so widely considered--even by the most 'establishment' institutions--cited to have so many false results, negative and supposedly positive too. I mean, I was pretty astonished that the tests that doctors use most often to determine if you had lyme or not had an acknowledged error rate around 50%. . I mean, that really is 'flip a coin'.
But the thing I was going to say is that I have all of these Quest and Labcorp results, mainly from my pre-lyme diagnosis, for many different things. And MANY of them have, at the bottom of the results page, some sort of disclaimer that the particular test has not been approved or evaluated by the FDA.
That always kind of disturbed me anyway. Until this illness, I had this idea that most (if not all) lab results were somehow empirically correct and reliable.
By chance, I met a doctor over the weekend, in a sort of social setting. A friend had told him I had lyme/babesia. The doctor asked me a number of questions. He had the impression that lyme is extremely rare in our area (Los Angeles, and he lives right around the corner from me). He asked if I'd traveled to endemic areas (I really haven't). He said he had 2 patients currently who had a bunch of sort of odd symptoms, and he was starting to consider lyme. He said what he did was to do a standard ELISA, and if they came back positive, he re-tested WB at Stonybrook. We talked for a while, he did not seem aware of the known error rate in ELISA tests, and also had never heard of babesia.
He was very nice, and asked lots of questions.....but it also sort of shows the confusion about all of this.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Keebler
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The confusion with doctors has to do partly with this not even being taught in medical school. The IDSA has lead what amounts to a campaign of criminal proportions to keep doctors in the dark.
Most labs don't do the right tests and, often, use incorrect methods for some of the tests they do perform.
True, not every person bitten by an infected tick will necessarily contract the infection, but it could lay in waiting, even if symptoms did not develop in the weeks after the bite. And, by the time an infection develops, it can be impossibly hard to treat.
As for waiting to see, rather than your being proactive with treatment since the tick that had bitten your son was positive for ehrlichlia, you did the right thing in getting treatment with a LLMD. Your son is very lucky that you acted promptly on this. You may have saved his life.
I believe either last summer or the summer before, a little girl in Missouri died from Ehrlichia. Early treatment might have saved her - and others.
Fourteen years ago, in CT (but authored by NJ doctors) . . . yet the IDSA ID doctor in NJ thinks this is no big deal:
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Clin Infect Dis. 1995 Oct;21(4):910-4.
Human granulocytic ehrlichiosis in Connecticut: report of a fatal case.
Hardalo CJ, Quagliarello V, Dumler JS.
Department of Internal Medicine, Morristown Memorial Hospital, New Jersey, USA.
We report a case of granulocytic ehrlichiosis in a 71-year-old man who presented with an acute febrile illness and subsequently developed multisystem organ dysfunction and sudden severe anemia with thrombocytopenia requiring intensive care, mechanical ventilation, hemodialysis, and transfusions.
. . .
This, to our knowledge, represents to first documented case of human granulocytic ehrlichiosis to occur outside the Upper Midwest.
Because of the possible epidemiological association of Ehrlichia species with the deer tick Ixodes scapularis (dammini), this case raises additional concern for clinicians and patients in regions where Lyme disease is endemic.
PMID: 8645839
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And
Medicine (Baltimore). 2008 Mar;87(2):53-60.
Hamburg BJ, Storch GA, Micek ST, Kollef MH.
Division of Pulmonary and Critical Care Medicine, Barnes-Jewish Hospital, St. Louis, Missouri, USA.
The importance of early treatment with doxycycline in human ehrlichiosis.
Excerpt:
. . .
Human ehrlichiosis is a serious disease that can be fatal if not treated appropriately. . . .
Isolation and characterization of Ehrlichia chaffeensis strains from patients with fatal ehrlichiosis
CD Paddock, JW Sumner, GM Shore, DC Bartley, RC Elie, JG McQuade, CR Martin, CS Goldsmith and JE Childs _Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia 30333, USA.
Ehrlichiosis: Human Monocytic Ehrlichiosis, Human Granulocytic Anaplasmosis Updated: September 2008
Excerpts from New York State, Dept. of Health:
Ehrlichiosis is a tick-borne disease which can be caused by either of two different organisms. Human monocytic ehrlichiosis (HME) is caused by Ehrlichia chaffeensis, which is transmitted by the lone star tick (Amblyomma americanum).
Human granulocytic anaplasmosis (HGA), previously known as human granulocytic ehrlichiosis (HGE), is caused by Anaplasma phagocytophilia, which is transmitted by the deer tick (Ixodes scapularis
. . .
Symptoms appear one to three weeks after the bite of an infected tick. However, not every exposure results in infection.
. . .
The symptoms of HME and HGE are the same and usually include fever, muscle aches, weakness and headache. Patients may also experience confusion, nausea, vomiting and joint pain.
Unlike Lyme disease or Rocky Mountain spotted fever, a rash is not common. Infection usually produces mild to moderately severe illness, with high fever and headache, but may occasionally be life-threatening or even fatal.
. . . .
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[ 06-02-2009, 11:21 AM: Message edited by: Keebler ]
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Keebler
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Keebler
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posted
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Bottom line, in reply to your ID doctor's accusation that Igenex and ILADS doctors are quacks (and that you, therefore, are less than smart), I would state shock and dismay that so many typical labs and most IDSA doctors, while good at other things, are criminally ignorant and incompetent when it comes to tick-borne infections.
I would leave LDA pamphlets in the lobby of her office building so that people can become better educated because it's sure not going to happen with that doctor.
I had to go to the pediatrician today for my four year old. This doctor was also not in favor of treating the ehrlichia. I did not mention my trip to the LLMD and i will not be mentioning it to any of my other doctors.
And one more thing, i had two doctors tell me not to treat my son because the medication will stain his teeth. I should only hope that he has a long healthy life ahead of him and stained teeth will be the least of his problems.
Best wishes to all of you.
Posts: 6 | From NJ | Registered: May 2009
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Keebler
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There may be things you can do to prevent staining of the teeth. I don't know what they are but please do investigate that. It might be something fairly simple (but not tooth whitening or anything like that).
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What abx is your son taking? Is it tetracycline? If not, tooth staining should not be a problem but you can ask your doctor about that - an if anything can prevent it.
Is he also taking any supplements such a probiotics or milk thistle (dosed for a child)?
posted
I've never heard a doctor worry about antibiotics staining teeth when they treat acne for months and years, but for some reason when it comes down to a serious illness that can disable and kill you they use that as an excuse to let you suffer.
Posts: 499 | From Indiana | Registered: Oct 2007
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Marnie
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posted
Look at this link...then cut and paste it into a MS word file and print it out.
Take it with you to the doctor. It looks to take IM doses of abx. to halt lyme. Get it fast, hit it hard.
Tough because the above (Rifampin) doesn't look to hit Bb if co-infected.
In which case...IM penicillin together with the above (oral Rifampin) maybe needed.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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bettyg
Unregistered
posted
i was just reading cure unknown tonight..
some comments NOT VERBATIM.
steere came up with this theory of doing elisa tests only; if it tested POSITIVE; then do a western blot igm and igg.
steere & d..... can't remember last name ... came up with OMITTING OSP A & B from the number of positives counted.
so we all these years of misdiagnosis to steere & company!
also, cdc sent something to all states; minn's. strong advocate tom grier, got it stopped immediately in their state OR they would have had to comply w/cdc on steere's theory.
rest of states NOT objecting due to no active advocates like tom grier, are FOLLOWING CDC'S guidelines!
*****************
posted on lymenet during the last 5 years below ....
Tick Specialty Labs: Too Many Positive Findings? They Save Lives By James S., MD, MAR, PA, DABPN, DABFM
I asked Dr. Harris, from the internationally respected, IGeneX labs, to reply to the dubious comment that IGeneX "only has positive findings."
This is not valid for many reasons. First, many physicians using IGeneX get negative results. Further, IGenex has done quality assurance studies with appropriate negative findings in uninfected controls. And the company, as you can see below, has done a great deal to be certified and licensed.
The "all results are positive comment" is lazy, sloppy and uninformed. Lyme is the leading vector illness in the USA. A positive result should not be rare. ********* IGeneX, Inc. is a reference laboratory located in Palo Alto, California specializing in Lyme disease and other tick-borne diseases. We take pride in the quality and diversity of the testing that we perform on samples from around the world.
IGeneX is licensed by CMS (Centers for Medicare and Medicaid Services) and is strictly regulated by CLIA. We are licensed in all states, including California, New York, Pennsylvania, Maryland, and Florida where special licensing is required.
The laboratory is inspected by these state and federal agencies on a regular basis. A Ph.D. consultant is also used to ensure that our laboratory is current with all the compliance regulations.
IGeneX participates in all proficiency programs required, such as New York State. Independent specialty laboratories, such as IGeneX, who have a narrow focus in testing, typically are not certified by CAP, but we do participate in the CAP Proficiency programs.
IGeneX has been testing clinical samples for over 11 years. The staff consists of a Laboratory Director, an MD Clinical Consultant, and several other MDs who also are licensed Clinical Laboratory Scientists who manufacture and perform tests. The personnel responsible for the test quality and performance are all licensed Clinical Laboratory Scientists, most of whom have been with IGeneX for many years. Our Research team is comprised of qualified PhDs and MDs and experienced Research Associates.
Customer Service is our main goal and the office staff is always willing to assist our patients and physicians. We take pride in our trained personnel that have worked together for years.
IGeneX is continually working on the advancement of existing tests. In addition, IGeneX is committed to designing and researching new technologies and opportunities. Our goal is to give Lyme patients and their physicians state-of-the-art tools for diagnosis of Lyme and other tick-related diseases. -------------- [Steve Andison Comment] The Federal Center for Disease Control periodically ships identified samples of what they know to be positive and negative samples to IGeneX to determine the accuracy of their testing procedures. Their accuracy rate for both positives and negatives is unsurpassed by any facility in the United States and with their state-of-the-art techniques and equipment, they may be the most accurate lab for diseases carried by ticks.
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posted
my neurologist also used that word "quackery" when referring to Igenex and chronic lyme. He told me everyone who sent bloodwork to Igenex would get a positive result..
I did my own research and learned they are blind tested by the cdc and they are an accurate lab and could find nothing to back his statements up..
Some doctors have their professional opinion, and there is NOTHING that you are going to be able to say or do to change it. I didnt bother trying, I got a new doctor.
seekhelp
Frequent Contributor (5K+ posts)
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posted
It seems like it would be in Igenix and LLMD's best interest to fund a study to have 500-1,000 random people w/o symptoms send their blood to Igenix for WBs. They could elevate credibility.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
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seekhelp,
Igenex does not need to defend their reputation from slanderous assaults that are based on ignorance, as in the case of the doctor above. What needs to be elevated is the education of doctors.
When one is educated in matters of testing and tick-borne infections, it is clear that Igenex is a very reputable lab with the best tests available at this time. They've gone through all the hoops and have passed with flying colors. There are a couple other labs that also meet the call.
But, if talking about elevation here, the methods used for testing at all the labs should come up meet the methods and standards at Igenex.
Some doctors, such as the one described, don't understand the complexities of testing because they've not read all the literature about this. It's not necessary all their fault as the medical associations work very hard to shield doctors from the truth.
Whether they are educated or not, however, they do not have the right to defame the name of an excellent lab that can help save patients' lives when others fail so miserably in this area.
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[ 06-03-2009, 02:20 PM: Message edited by: Keebler ]
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