posted
Hi everyone. I am in a bit of a puzzle and I need your help.
My lab results from Igenex are the following: IgM **23-25++ Igenex = positive IgG **23-25 + Igenex = positive ** 34 IND CDC = positive ** 39 IND CDC = negative ** 39 + **41 + ** 41
My question is: how reliable of a lab is Igenex? Should I trust the results? The reason being: I have been clinically diagnosed with Lyme by an LLMD, Dr. M. in upstate New York. I also saw an Infectious Disease doctor who told me that I don’t have Lyme.
He said the bands on the lab could represent many other types of infection such as oral thrush, other viruses, other bacterial or fungal infections that are not specific for lyme.
I am HHV-6 positive which I believe comes with it’s own set of symptoms. Could it be this that’s actually showing on the lab test?
From the reading I"ve done, I thought that the bands did correspond to things like the Outer Surface Protein, the Flagella(tail) etc... Is it then that there is no consensus on what the bands actually represent?
He also told me that the lab was taking kickbacks (money) as well as telling me that taking long term antibiotics is dangerous, although I did expect him to say that!
Question#2
When I first got sick(last september) I had a myriad of symptoms including :a lot of tingling, burning sensation, extreme fatigue, neck stiffness and a few other things.
Over the next 7 months some symptoms went away while new ones arose. However, since seeing an osteopath a couple of months ago, I have become a lot better, WITHOUT ANY MEDICATION.
She said my whole body was the most tense she’s ever seen! These days, I”m mostly just tired for no obvious reason.
I never had any of the brain fog/ mental capability issues, eye/vision problems or joint pain/arthritis that many people seem to experience. Is it possible that I don’t have Lyme but something else? Could my ID doctor be right?
Is it possible to be asymptomatic after 8 months? I’m just scared of taking so much medication (+ the cost of it all) and only having seen one LLMD. Should I get a third opinion from another LLMD, just to make sure?
Thank you all so much for taking the time to read this and respond (if you choose to do so). It is deeply appreciated.
Posts: 5 | From Toronto | Registered: May 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You are experiencing the lyme disease controversy which has been raging in the medical community for about 30 years.
The ID doc is in one camp, and the lyme doc you saw is in the other camp.
The Infectious Diseases Society of America (IDSA) has issued lyme treatment guidelines that virtually every ID doctor and every other doctor in the U.S. have been told to follow.
The IDSA says that lyme is RARE and easily cured with just a few weeks of antibiotics. That is why an ID doc will say that you don't have lyme disease.
It is so RARE according to the IDSA that doctors should not expect to ever see a case.
Meanwhile, our lyme doctors and the International Lyme and Associated Diseases Society (ILADS) to which they belong says that lyme is worse than an epidemic and lyme is extremely difficult to cure.
So, there you have it.
Our lyme doctors trust Igenex because it does the best lyme and coinfection tests. This is a lab that specializes in tick-borne diseases. So, it is much better than Quest or LabCorp.
The ID docs and the IDSA are always putting down Igenex because it finds lyme disease in so many people. That is why your ID doc bad mouthed them. The Igenex testing is proving that lyme is NOT rare at all.
I can tell you that in the beginning, lyme can be episodic. It came and went in episodes for me for 5 whole years. Finally, after that, it was with me constantly.
People with fibromyalgia often really have lyme disease. I have talked with many with the fibro diagnosis who said that at first their fibro came and went in episodes.
So, you have a positive lyme tests from Igenex and you have had lyme symptoms. That equals a diagnosis of lyme disease.
Dr. M, whom you saw, is a very good lyme doctor. You bet she knows a lot more about lyme disease than the ID doc you saw. And, if the ID doc you saw is in Canada, I believe they have a policy of denying that lyme exists there.
So, you will have to decide who you want to believe.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
Also, read the following post which is an explanation of the Western Blot, given by a lyme doctor. After you understand how the test is done, you will likely conclude that your positive test means lyme and not other bacterial infections. The band 41 can be positive from gum disease. So, if you have or have had gum disease, that is a possible explanation for band 41. I believe Igenex even says this right on the Western Blot test.
This post is found at the top of Medical Questions.
Also, I had undiagnosed lyme disease for 10 years before a doctor finally tested me for lyme disease. I was very sick, but I had no joint pain or problems. My brain was not affected until about year 10. The disease can cause hundreds of symptoms. Nobody gets them all.
But, if it is lyme disease, the disease will continue to progress. In other words, you will get more and more symptoms as time goes by.
Also, if it is lyme disease, when you get good treatment, you will react to it. That is the proof of the diagnosis. See this quote from the most famous lyme doctor of all. Here is where he says this:
"Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
See the last sentence where Dr. Burrascano says that "another very important factor [in making the lyme diagnosis] is response to treatment."
So, the doctor tentatively diagnoses you with lyme disease, gives you a course of lyme treatment, and your reaction to treatment makes the diagnosis definitive.
And, Igenex does NOT take kickbacks. What a slander! I am sure that ID doc has absolutely no proof of this and yet he slanders this company to a patient. Ridiculous.
Posts: 9931 | From Maryland | Registered: Dec 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
symptoms come and go and change. sometimes you have good days and some are really bad.
I went years with no treatment. I don't do well on abx because of other conditions.
there are herbal treatments you can try
igenex is completely trustworthy.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
It's funny that the infectious disease doctor is putting down Igenex considering the IDSA has a ton of controversy about their guidelines, including an investigation from Connecticut's Attorney General Richard Blumenthal.
"The Connecticut Attorney General's investigation found significant irregularities in the IDSA Lyme guideline development process, including significant conflicts of interest among the guidelines panel members"
Igenex is a good lab. Even Medicare pays for the test.
Igenex tests for more antibody bands than other labs. One specific band comes up on people who had the failed Lyme vaccine and people who have been infected with Lyme, so the IDSA doesn't count it.
My neighbor got infected with Lyme and had the bulls-eye rash. He waited 8 months to get treated. It wasn't until he had heart palpitation that he gave it attention.
Lyme manifests differently in everyone.
Some people initially have a terrible flu, then it goes away and they don't have symptoms for a years. This is without taking antibiotics. This is what happened to one of my friends. Then it came back with a vengeance.
Posts: 2839 | From California | Registered: Jul 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Sounds like lyme with a 31+ band and possible bartonella with such tense muscles. You're ID dr is simply wrong, as most are until they get get up to speed. Hard to believe they graduate med school and never learn a thing past that. Surely that wouldn't work in the IT industry, why would it in the medical field?
Igenex taking kickbacks? Dr. H has put is a$$ on the line and been harassed by gov't and pharmaceutical execs.....He hasn't taken a dime. They definitely don't say everyone is positive, I've known plenty of people who have not shown any bands through Igenex.
Does your ID dr. know that a positive 31 band is lyme specific? Very unlikely lab contamination. Especially given your symptoms are exact chronic lyme symptom.
I had an ID dr. trash Qwest labs asking if it was a lab in someone's basement.
posted
You're positive and need to be working with a good Lyme doctor, not an ID doc!
Lyme is a relapsing illness, meaning symptoms fluctuate. But it all will get worse unless we treat.
Posts: 13117 | From San Francisco | Registered: May 2006
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Yes, you have Lyme. For the first four years after my initial episode, it was remitting and relapsing. Then it just stayed and got worse.
Long term antibiotics gave me my life back. Think of it as chemo for Lyme. I am not 100%, but then I waited 7 1/2 years before I got a diagnosis confirmed by Ingenex.
You have to be your advocate with Lyme Disease. Maybe, try herbal remedies if you are in remission right now to keep it at bay.
Good luck.
Posts: 1954 | From Illinois | Registered: Aug 2007
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