Discovery of new Lyme strains invalidates current tests
Benjamin Luft, M.D., Professor of Medicine at Stony Brook University Medical Center, discovered that four highly virulent mutations of Borrelia burgdorferi, the spirochete that causes Lyme disease, may account for the alarming increase in cases for the past 20 years. Luft’s investigation and findings were initially reported in Emerging Infectious Diseases.
This genetic drift of the organism could explain why current Lyme disease tests, which were defined nearly two decades ago, are missing approximately 75% of the confirmed positive Lyme cases, according to a recent Johns Hopkins study.
Pam Weintraub, author of “Cure Unknown: Inside the Lyme Epidemic,” recently interviewed Luft for the Psychology Today website about his findings:
“What we will find,” says Ben Luft of Stony Brook, “are proteins we never tested for on our ELISAs and Western blots—proteins we were never even aware of. But they will be the critical markers for invasive, infectious Lyme disease. Perhaps people who test negative on the old tests will become positive when we look for the right markers.”
Weintraub also discusses how the classic Lyme studies relied heavily on disappearing rashes as an objective signs of a cure, yet if the researchers unknowingly used one of the non-invasive Lyme strains that stay in the skin, they may have to redo these original studies in order for them to be scientifically valid. She adds:
“The answers won’t be found in the twentieth-century technology of the Western blot, by today’s standards crude yet still trotted out by IDSA as evidence absolute that they are right. (The Western blot for Lyme is so flawed that even its major manufacturer says he has found numerous “band” patterns more accurate than the one in use today.) Instead of relying on flawed 20th century technology, we must look to the science of the twenty-first century, including state-of-the-art genomics and proteomics that allows for the sequencing of every gene and protein involved in every stage of Lyme. With evidence of this calibre we won’t have to fight over the truth: We will know what’s going on.”
The controversy over Lyme disease testing is the subject of the new investigative documentary, UNDER OUR SKIN, which will open in theaters nationwide this summer.
Photo Caption: The CDC-endorsed Lyme Western Blot test, shown above, is the second step in determining whether a patient is considered “CDC positive.” This outmoded test is problematic, and under the 2006 IDSA Lyme guidelines, the subjective interpretation of one blurry line can mean the difference between treatment or not for many patients.
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This is Great news, I can’t tell you how awful it is to be sick all the time and because of the old test we were being frowned upon as crazy people. We are not crazy but sick with Lyme borellia working it’s destruction in our bodies.
I had so many western blots i lost count and they said it must be cfs or fibro it was PCR test that did it for me. I am late stage #3 and my spect scan was positive also for Lyme Damage. Stonybrook let me down big time and told me i didn’t have Lyme.
I am so relieved now that we are getting closer to the truth and all these fibro,cfs and others need to get retested with the new Science. Lyme left untreated only get worse and worse until it finally ends in Death, and it’s a horrible Journey.
Hang in there John, I hope your being treated now…. I was sick for YEARS with Lyme before I was diagnosed and finally treated with antibiotics, I don’t know how I hung in as long as I did, but I made it with every alternative non prescription treatment modality I could find and it kept me around till I finally got the right help…Your a fighter, so you ARE going to make it too, besides were all in this together.
Kathy
This research brings to mind an article I saw in the NYTimes that talked about how syphilis was originally a New World disease — a skin disease transmitted by touch via open sores (dubbed the “great pox” to distinguish it from small pox) — but rapidly became a sexually transmitted disease when it crossed to Europeans (who wore more clothing). This enormous change happened over a relatively short time span, and within recorded Western history. Kind of makes you wonder whether Lyme could similarly change over the same relatively short time span. Given the idiotic assumptions that have led to the controversy and growing epidemic, we are probably tempting fate…
More accurate testing will lead to more accurate diagnosis which will then start to show the true numbers of people that suffer. That will lead to more research. This epidemic needs to be stopped.
When will the new testing be available, anyone know???
There are no better tests in the FDA pipeline, as far as we know. The new C6 peptide test is being pushed, behind the scenes by the IDSA, but independent studies have found that it’s not much more accurate that the current two-tiered protocol.
Kris
This is eye opening. I was diagnosed with Lyme almost 10 years ago even though my blood test came back negative. I had all the symptoms, and after a few days of Doxi. I felt better. This past year more alarming symptoms arose, I didn’t even equate it to Lyme. I went to a neurologist because I thought I had a brain tumor of the Olfactory Nerve. She did a blood test and it was positive. I cried. It was the first positive test. Back on Doxi.,Pred. better as lons as I stay on Doxi. Off pred only did 7 day pack. She sent me to an infectious disease Dr.,she said I couldn’t have it because the 2nd blood test Western Blot to confirm. I left that office and told them not to send me a bill. Your article confirms my thoughts. I have 50+ symptoms.
Hello must be something to the positive test now. CT scan showed no tumor.
Is there a conspiracy of some kind trying to deliberately deny development and access to accurate testing for Lyme? We hear about medical boards and insurance companies working together to deny patient coverage for Lyme treatments. Now stories are circulating that biological germ warfare research and development are at the root of many conditions, including Lyme Disease.
Any thoughts?
Ellen
Thank all of you out there who have the strength to stand up for all Lyme sufferers and help by researching and new testing. I, like many of you out there, am too sick to help out and raise funds. I was diagnosed with Lyme in 1991 (18 yrs. ago), unfortunately I was given only 7 days of antibiotics which as we all know was not enough. After dozens of doctors and the usual myriad of every other diagnosis and treatments for a dozen years, I was lucky enough to be seen by Dr. Burrascano before he retired. He was honest enough to give me the truth, I have been given too many medications that worsened my Lyme and after having been bitten a total of 4 times, there is currently nothing to help me at this point. I have tried years of oral antibiotics and had IV Rocephin which almost killed me. I am lucky enough that my tests show up positive and my SPECT scans continue to show Lyme damage but that doesn’t help the pain and dozens of other excruciating realities of Lyme.
Mine is the typical story of many of you out there: I had to quit my job almost 3 years ago; I am bedridden; had to give up my car; my husband cannot deal with this so we pass daily with no words spoken; my husband lost his 2nd job so we are forced to file bankruptcy and are on the verge of losing our house. If I were not a Catholic and it was not the ultimate sin I would have commit suicide long ago.
My in-laws say I am faking it and just want attention and have gone so far as to pass these lies onto many people in our very small New England town. When I do get out of bed for an hour or so per day (on a good day) I have to use a cane or wheelchair (I have lost feeling in my left leg due to nerve damage from the Lyme). I get dirty looks from fellow moms at my child’s school and get nearly pushed over since it takes me longer to walk with my cane.
Not only does this society not accept Lyme as a real disease but those of us who suffer immensely are looked at and treated like the worst of the worst and completely degraded. I have very little family left, no friends and just a husband who is torn between his love for me and his controlling family. The only person I have left is my mother, Thank God for her. She has moved back in with me to care for me around the clock. I know I am very lucky to have her and feel bad for those of you who suffer with nobody to help you.
Unfortunately we will be on the street soon with nowhere to live so it will be interesting to see how Lyme reacts to living on freezing cold streets in New England in the dead of winter. Maybe I will get lucky and freeze to death and give my mother her life back. I actually had one mother and family friend say to me, “Why don’t you just leave your poor mother alone already and stop feeling sorry for yourself!” WOW, what a nice reaction to someone who is dying with a disease.
Enough from me. I am sorry but I have nobody who understands this disease. Although my mother cares for me she cannot bear to talk about Lyme because it brings her to tears to think of me dying with no cure or treatment for this horrific disease.
I feel and care for all of you Lyme sufferers out there and pray that there will be a cure someday soon to save others. So please stay strong for one another and thank you very much for all of you out there who are fighting this fight. – Meg.
Is there hope for those of us who are very sick that a test will become available any time soon? It’s been 10 years for me and I can’t even take antibiotics anymore due to increased brain pressure.
I was one of the lucky ones to test high positive on a Western blot in 1990, seven months after my bulls-eye rash. After years of antibiotics, intravenous and otherwise, and years of alternative treatment, I am still sick. So now what?
Amy
Amy, if you are still sick it is likely that you have other coinfections such as babesia, or baronella — have you been tested for these?
If so it is likely that your symptoms are not from lyme at all but a completely different disorder.
This madness needs to stop. We need help now and can’t wait any longer. We’re given 1 life here on planet earth and look at the millions suffering at the hands of a few crooked criminals who did not do their jobs and knew darn well, long ago, this disease was more then they claimed. Waiting any longer is simply not an option any more…no more! We have a new president who cares, and as full as his hands are, he won’t let us down. He cares about everyone- and us included. Glorier days are coming for us. Hopefully before my brain explodes with what my dear friend calls me, “spiral pasta brain” yes, that’s the name I have inherited.
[...] the IDSA Lyme guidelines endorse an indirect antibody testing protocol that misses well over half the truly ill patients, and attributes ongoing Lyme disease symptoms to the “aches and pains of daily [...]
Well, I was also one of the lucky ones who tested positive the first time after being diagnosed with fibro for 17 years…Same story as most of you, but I took the path less traveled and after at least 1000 hours of research, I am mostly on the mend and I have to tell all of you that things can turn around without abx…the nerve damage and a lot of the neuro problems have disappeared for me…truly a miracle…I went exactly the opposite way of the western doctors, and went with everything that the FDA won’t approve and it all helped…it took over a year but am at least 80% back to being me!!! I almost forgot was I was like before LYME, but I’M BACK!!! And I LIKE MYSELF! Thank God for all of the people that came before me to make it easier…You have to be YOUR OWN DOCTOR with this disease because 98% of them don’t even know what they are doing and could care less unless one of them or THEIR family members get it…anyway, to the UOS people…THANK YOU FOR BRINGING THIS OUT INTO THE OPEN. We need a database to keep track of ourselves, not THEIR statistics…OURS…That’s the only way that we can unite and help one another!
[...] it worth keeping our minds open to the possibility that the Lyme bacteria — a neurologically invasive spirochete just like syphilis — could be the root cause of a myriad of psychiatric disorders that are currently considered [...]
Has anyone investigated treatments other then antibiotics? I found a doctor who says that “antibiotics trigger a type of virus called bacteriophages (viruses that normally eat bacteria) to cause the bacterium they have infected to start producing toxins. These viruses can act as genetic delivery vans, invading bacteria, such as spirochetes, often lying dormant until activated by a change in the host environment. Once activated these viruses insert their toxin generating genes into the bacterial chromosomes. These viruses turn basically harmless bacterium into killers through this genetic sequencing of toxins. So now we see that not only are these toxins released through the die-off of bacteria, and not only can antibiotics actually increase the production of the toxins, but these viruses can cause the bacteria to rupture spilling their toxins into your body. When a doctor uses an antibiotic and kills some Lyme spirochetes, there is a resulting Jarish-Herxheimer reaction…a worsening of the patients symptoms in response to the increased release of bacterial die-off. The toxins are dumped into the blood stream and circulated throughout the body until they can either be eliminated by the body or become lodged in areas of weakened tissues. As neurotoxins they are preferentially taken up by nerve tissue. These lodged toxins are one of the reasons that symptoms can persist even after the actual Bb infection is gone because the toxins remain as an irritant in the tissues for years. Chronic Lyme sufferers do not have adequate detoxification mechanisms to detoxify these Bb toxins.”"
So, when you are SO sick want to get better how do you trust doctors and make decisions on treatment without maybe making a decision that gets you even sicker?
I’m just really scared, I want an answer, but I guess I don’t want the answer to be Lyme.
I have not been “formally” diagnosed with this disease, which I really don’t want to be. But I do want answers to the tons symptoms I am experiencing. The worst of which are the neurological, they are really scaring me. I’m a shadow of the person I “used” to be. I just want to be back to the creative, quick, smart, active person I was.
The prevailing theory is that a Jarish-Herxheimer reaction is caused when the antibiotic kills the Lyme bacteria, Borrelia burgdorferi, and the fragments of the dead organisms create excessive inflammation in the body. All strains of Borrelia are pathogens, causing disease in human bodies. There have been no studies that shown that bacteriophages make “herx” reactions worse, but I guess it’s possible.
Now, where bacteriophages can cause trouble is with this process called transfection. Bacteriophages can insert bits of foreign DNA into a human’s DNA. There are all sorts of DNA error correction mechanisms in a body, but when the DNA damages reach a certain level, it can cause wreak havoc. If you Google Alan MacDonald and transfection, you can read his theories on how junk DNA through transfection may explain some cases of Alzheimer’s Disease.
[...] Lyme disease is not rare and tick bites often go unnoticed, especially since commercial laboratory testing for Lyme disease is inaccurate. Consequently, the disease is often not recognized and may persist in a large number of patients, [...]
Thank you for this information. It explains one reason why my blood serum and cerebral spinal fluid was negative, but my http://www.frylaboratories.com photo demonstrated extensive disease process of bartonella.
I have been very, very ill. Yet, I am slowly getting better on long term IV antibiotic therapy. Without this, I would have left my two minor children without a parent. Thank God for people who try to help us. Thank you, Andy for helping all of us through “Under Our Skin.”
I am researching for my sister who spent over a week in a boston hospital in november: 2 spinals, cat scans, pet scans, mri’s and of course lyme tests. all negative. emergency room visits in july and august. symptoms:double vision, bi-lat bells palsy, slurred speech, unbearable headaches. we have found a wonderful doctor in harvard, ma., who knows lyme, ordered a cd-57 test and it was positive! I can’t believe how closed minded the boston dr’s were-we insisted it was lyme, live in country, horses dogs etc..they were adamant that is wasn’t and were downright hostile to my husband (a dr.)who questioned them. How do we educate these closed minded doctors?
The lyme community is working endlessly to get legislation passed to keep our doctors from being targeted by insurance and medical boards for treating lyme past the 4 week guideline. We need our LLMD’s and this valuable information is exactly why. Our PCP’s aren’t going to know this stuff. ILADs doctors have this information but the government are taking them away. Contact your state government to keep our doctors safe and shine a light on HR 1179 lyme bill.
blessings
Can’t wait to see UOS at the next SE Michigan Lyme meeting! Anyway, previous posts mentioned the connection between many psychiatric disorders and Lyme and inadequate testing. One has to wonder if Pharmaceutical companies want to keep it that way. If Bb is indeed a vector or main co-factor for scores of chronic diseases then to find a decent way to neutralize Lyme would slash profits across the board. And the first step in that is discovering accurate tests. We have a smokescreen here, but I would not go so far as to say a conspiracy (although it may turn out that way like it did for the tobacco companies). We also have a potential time bomb since it does look like its sexually transmitted, transmitted in utero, and transmitted by many kinds of backyard critters. So the government does not want any attention on it to fan the flames and create a panic. Also, I think that we are at the cusp of a paradigm shift in finding the causes of many diseases as bacteria or bacteria/viral complexes (evidence points to a super tiny bacteria in some cancers, eg) and the metabolism and uptake of nutrients. At this stage there is going to be a lot of collective denial in the medical industry. That would explain the arrogance and ignorance of the doctors. That still is no excuse for how many doctors have treated Lyme and other chronic patients. Damn them.
My son who is 25 has had lyme for 3yrs. He was diagnosed right away and treated right away with the standard 4 week course of antibiotics. He did test positive for lyme. He never got better and only got worse even though he caught it right away and has has several courses of antibiotics including IV. He has also been tested for co conditions all negative. We are very scared and not sure what to do next. It sure seems like there should be help out there somewhere, so we keep hoping…
I would like to share another example of researchers finding ways of improving the predictive reliability of tests for Lyme disease.
Scottish doctors evaluated the use of local B. burgdorferi sensu stricto and B. afzelii strains in a single mixed antigen for their own in-house IgG Western blots in the routine diagnostic setting and then compared it with their current protocol. They also used a revised criteria for reporting results.
In the end, they were able to increase significantly the number of patients who were able to test positive using the new method and they were improved the accuracy of predicting those who were negative.
Read the abstract from the Journal of Clinical Pathology, published online first, 23 February 2009.
http://dx.doi.org/10.1136/jcp.2008.063461
This is the kind of work which should be going on everywhere.
I’d like to make a comment regarding STARI if it’s alright…
My grandmother was bitten in 1906 in Corsicana, TX and is patient zero of this infection running through my entire family / clan. According to the LLMD in Houston who originally diagnosed me in 2002, I am infected with sp. afzelli or garinii (my spelling is awful) which hasn’t been present here (TX) in nature in about 30 years. These strains originated in central Europe and this is one way that the LLMD found out that much of the infection in this area is congenital. The newest strain, carried by the Lone Star tick is called, appropriately, B. lonstarii.
I’m not sure what exactly is being referred to as STARI in the literature, but can tell you that I tested CDC positive for Lyme (and thank God for it) on the WB.
You are so right… We need much better tests!!!!!
Eleanor B. Mason
Borrelia Information Center of Houston
bic_houston@yahoo.com
“We are more than containers for Lyme”
[...] Dr. Burgdorfer: The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their… [...]
I believe I have Lyme, all blood tests negative, etc. I had blood drawn yesterday for Western Blot, ordered by a forward thinking walk-in Dr. who believed my info re:ELISA not being enough.
In the duration, I am taking Lyrica, 225 mg TID, plus TRAMACET every 4 hours to help with the pain/weakness. It’s working, and I am functional, (although mad that I am paying through the nose for this ability to move on with my daily tasks.)
I hope the Rx info helps those of you unable to carry on carrying on.