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New approaches may help solve the Lyme disease diagnosis dilemma
Lyme disease [is] one of the most charged and controversial of all infections. It's not hard to find tick-bitten patients who live for years with undiagnosed and unexplained symptoms that defy repeated treatment attempts. Patient advocates point to people who agonize for years, drifting from doctor to doctor in search of relief. Battles with insurers who won't pay for therapy without a definitive diagnosis have played out in courthouses and statehouses. Desperate patients sometimes turn to solutions that may pose their own risks. The U.S. Centers for Disease Control and Prevention recently described people who had developed serious complications, or even died, after unproven treatments for Lyme disease.
Many, if not most, of these problems are caused by the lack of a reliable test for the infection. "This deficiency in Lyme disease diagnosis is probably the most prevalent thing that is responsible for the controversies of this disease," says Paul Arnaboldi, an immunologist at New York Medical College in Valhalla.
That's why Arnaboldi and other researchers are trying to devise better diagnostics (SN: 9/16/17, p. 8). The standard two-part test that's used now, which has changed little in concept since the 1990s, may miss about half of infected people in the early weeks of illness. The test relies on finding markers that show the immune system is actively engaged. For some people, it takes up to six weeks for those signs to reach detectable levels.
To find better ways to diagnose the disease more reliably and maybe sooner, scientists are trying to identify genetic changes that occur in the body even before the immune system rallies. Other researchers are measuring immune responses that may prove more accurate than existing tests.
The science has advanced enough, according to a review in the March 15 Clinical Infectious Diseases, that within the next few years, tests may finally be able to measure infections directly [DOI: 10.1093/cid/ciy614] [DX]. The aim is to amplify traces of the Lyme bacteria's genetic material in the bloodstream. Enough approaches are in various stages of research that some patient advocates have renewed optimism that the problems with testing may finally become a thing of the past.
Lyme Disease Cases Are Exploding. And It's Only Going to Get Worse.
First identified in 1975 in the leafy New England town of Old Lyme, Connecticut, Lyme disease has now reached what experts consider pandemic proportions. According to the Centers for Disease Control and Prevention (CDC), the number of confirmed cases of Lyme disease in the U.S. has more than doubled in the two decades leading up to 2017 (the most recent year for which final figures are available) and increased 17% from 2016 to 2017 alone. More than half the counties in the U.S. are considered high-risk areas for Lyme, according to the CDC, and in some areas, as many as six out of 10 ticks carry the infection.
[...] We now live in a frightening new normal: It's estimated that 300,000 people contract Lyme every year in the U.S., with victims found not just in traditionally tick-heavy areas like upstate New York and Maine, but also in all 50 states and Washington, D.C. While most people are cured quickly with antibiotics, some go on to experience lingering symptoms characteristic of Lyme, like headaches, fatigue, and joint and muscle pain, for months or longer after they've been treated, a condition known as post-treatment Lyme disease syndrome (PTLDS). According to a recent study led by experts at the Brown University School of Public Health, the number of people in the U.S. with PTLDS was estimated to be 1.5 million in 2016 and is predicted to rise to nearly 2 million by 2020.
(Score: 2, Insightful) by aristarchus on Wednesday June 26 2019, @05:54AM (11 children)
And even more better tests for Gluten intolerance, and vaccine-borne stupidity disease. Sorry. I have this condition that makes it impossible for me not to make fun of hypochondriacs. Did I tell you about the inscription on the hypochondriac's tombstone?
"I told you I was sick!" None of us gets out of here alive, though, you know, I have had a good run so far. So as long as no ticks bite me, or doctors needle prick me through the scab of a milk-maid with cowpox.. . . . . So far, so good.
(Score: 3, Informative) by MostCynical on Wednesday June 26 2019, @07:23AM (4 children)
There are tests for the genes for Coeliac disease. It is an incurable auto-immune disease.
You can have the genes, and still not develop the disease, but without the genes, you won't have coeliac disease.
Blood tests will show if you have been exposed to gluten, owing to markers for inflammation. A camera shoved inside will show damage.
"Gluten intolerance" may or may not be a thing, with many coeliacs being un-diagnosed.
If easting gluten causes inflamation that kills micro-villi in your digestive tract, and therefore impedes or stops micro-nutrient absorption, making sure you don't eat foods containing gluten does not make you a hypochondriac.
"I guess once you start doubting, there's no end to it." -Batou, Ghost in the Shell: Stand Alone Complex
(Score: 1, Troll) by aristarchus on Wednesday June 26 2019, @08:10AM (3 children)
Of course, definitely, if, with the emphasis on the "if". And "if not"? Making sure you do not eat food containing gluten when you are not diagnosed with celiac disorder does, in no uncertain terms, make you a hypochondriac. Do you want me to come over there and test you with my anal probe? May or may not be a thing. Can I suggest some homeopathic cures? The more you dilute them, the more potent they are. Or, they might kill you. Is that a tick in your sock? OmG! Rocky Mountain Spotted Fever, which is, after all, a real tick-bourne disease.
(Score: 1, Insightful) by Anonymous Coward on Wednesday June 26 2019, @09:23AM (1 child)
Choosing to eat or not eat a particular food or ingredient does not make someone a hypochondriac. To say that it does is quite absurd. If you need to spend a couple grand interacting with the medical establishment to get an authority figure to tell you what to eat, that's your business. But most people are content to use their own power of observation to decide not to eat ghost peppers again if it caused their asshole to burn last time.
(Score: 1, Troll) by aristarchus on Wednesday June 26 2019, @09:34AM
This is where uninformed common sense can kill you.
The burning subsides with practice and acclimation, and the ghost peppers kill off the colon cancer, even more effectively than CPD and Shamans. So if you chose this, you choose to to die! How about some nice Belgian White Wheat Bier, instead, or even better, with?
(Score: 1, Insightful) by Anonymous Coward on Wednesday June 26 2019, @05:14PM
>"Making sure you do not eat food containing gluten when you are not diagnosed with celiac disorder does, in no uncertain terms, make you a hypochondriac."
No, it doesn't. My wife does not have celiac disorder, but avoids gluten because she is allergic to wheat, barley, and sorghum. If she eats them, she gets horrible migraines. Asking for gluten-free food is much easier than trying to explain her particular situation. It eliminates some things that she isn't allergic to, but that is less of a problem than trying to educate other people about something they may never encounter again.
(Score: 2) by jimtheowl on Wednesday June 26 2019, @08:20AM (4 children)
Wow. Just wow.
Let us know when you get cancer so we can have a good laugh.
(Score: 2, Troll) by aristarchus on Wednesday June 26 2019, @08:47AM
And what makes you think I haven't? I spit it out. But that was some 1842 years ago. Healthy living, and not voting conservative, that is the secret to long life. Have you had your shots?
(Score: 2, Informative) by MikeVDS on Wednesday June 26 2019, @02:23PM (2 children)
I think his comment was referring to the fact that the science on this is showing that Lyme Disease, is curable, but sometimes the symptoms persist and even get worse and no one knows why. There is a cult-like following that says it's a continuation of the active disease, even though study after study seem to show otherwise. I don't have the answer and no one does, so people cling onto a hypothesis that becomes less and less likely and pays 10's of thousands of dollars on treatments, that show to be as effective as placebo and has negative side effects. I know someone who died of "Lyme" who paid for those expensive treatments and I know of another person who is going to start them soon. Hope and fear are often more powerful than rationality.
I would love if someone showed me that I am wrong about this but every source someone gives me, even the ones with scientific study citations, have been quack jobs. When you actually look at the studies (or at least the into for the ones behind paywalls), they all seem to either not say what the article claims or often directly contradict what they claim.
(Score: 3, Interesting) by HiThere on Wednesday June 26 2019, @04:57PM
If that's happening, my guess would be that the immune system is activated against the body. Certainly other things are known to work that way. All that would be needed is for the causative organism to be attacked by some protein that had a signature matching some protein used by the body. Then wherever that protein was used, you'd be attacked by your own immune system.
OTOH, my wife wasn't warned to expect that kind of problem. (She didn't, possibly because it was caught within hours.)
Javascript is what you use to allow unknown third parties to run software you have no idea about on your computer.
(Score: 2) by jimtheowl on Friday June 28 2019, @10:17PM
(Score: 3, Informative) by Spamalope on Wednesday June 26 2019, @05:53PM
Fail.
There is significant evidence that the gut plays at least a regulatory role in the immune system, if not a controlling one. Gut fauna form a complex symbiotic feedback loop. Upset that and you'll damage your health, and diet matters for that. Pop culture aside this is an area that's only beginning to be understood, though there is plenty of clinical proof that there is a there, there.
Even for Gluten, Celiacs isn't the only way to have trouble (Bone marrow/Mast cell diseases will do it, too). Any auto-immune disorder that damages regulation or friend/foe discrimination can do something similar with any food, sometimes just by causing hyper reactions to what would otherwise be a reaction so mild you don't know it's there. 'Modern' foods are likely for that (things we're not evolved for), which includes Gluten but also corn and cows milk. (goat milk works better with our gut, and tastes like sweetened cows milk)
But back to Lymes - it will live in non-vascular parts of the body (like joints), so the easy sort of blood tests are a poor indicator, and the immune system doesn't get to it well.
(Score: 0) by Anonymous Coward on Wednesday June 26 2019, @12:31PM
there have been people living in and around those tick infected woods for a looong time.
maybe if one could stop busying them with anti pipe line protests, give them some good internet connection,
they might find time to reports the secret anti-tick ingredient they stuff in their peace pipes?
also, maybe the antigen (might be a mushroom) needs a dead (infected) brain to me eaten by some vulture who shites it out and fertilizes some dirt for the cure to grow? who knows ...
(Score: 2, Interesting) by MikeVDS on Wednesday June 26 2019, @02:40PM (3 children)
I posted this as a reply to another comment down in a thread, but I think it's important, so I'll make it a new one.
The science on this shows that Lyme Disease, is curable, but sometimes the symptoms persist and even get worse and no one knows why. There is a cult-like following that says the symptoms are due to a continuation of the active disease, even though study after study seem to show otherwise. I don't have the answer and no one does, so people cling onto a hypothesis that becomes less and less likely and pays 10's of thousands of dollars on treatments, that studies show to be as effective as placebo and has negative side effects. I know someone who died of "Lyme" who paid for those expensive treatments and I know of another person who is going to start them soon. Hope and fear are often more powerful than rationality.
I would love if someone showed me that I am wrong about this but every source someone gives me, even the ones with scientific study citations, have been quack jobs. When you actually look at the studies (or at least the intro for the ones behind paywalls), they all seem to either not say what the article claims or often directly contradict what they claim.
https://www.cdc.gov/lyme/postlds/index.html [cdc.gov]
(Score: 0) by Anonymous Coward on Wednesday June 26 2019, @08:39PM
try this on for size: maybe it's really really bad. worms in the brain. totally makes you limp and useless and it's a biatch to cure (doxycycline for HALF A YEAR 0_o' ! your gut "flora" is basically DEAD at the end of the treatment. who knows what other (unhelpful) stuff you're going to pick up because of dead nuked gut and how your septic tank is gonna stink miserably xor the waste treatment plant is wondering why all the waste water won't turn clear.)
and the cluberment knows but can't really ACK it because large swats of a powerful, free and mighty country would be ... dangerous to its inhabitants?
gives a new meaning to: 'murika, land of the free and brave ... enough to wander the woods ^_^
(Score: 2) by pdfernhout on Thursday June 27 2019, @03:21AM (1 child)
See: https://www.amazon.com/gp/product/1439226989 [amazon.com]
"The Lyme Disease Solution is a comprehensive guide to the diagnosis and treatment of Lyme disease and other tick borne infections. The author, Dr. Kenneth Singleton, is a board certified specialist in Internal Medicine who himself struggled with severe symptoms of Lyme disease for 8 years prior to being correctly diagnosed and treated. His book is full of medical wisdom and practical pearls of clinical information that every Lyme patient will find immensely useful."
A lot of options are discussed their from diet to herbs and more.
It seems the Lyme bacteria have different stages -- including a spore-like encysted form one that are essentially invulnerable to antibiotics. You have to hit the bacteria when it is in an active stage (like when replicating) and vulnerable to antibiotics. That is why Lyme is so hard to eradicate with antibiotics.
See: https://jneuroinflammation.biomedcentral.com/articles/10.1186/1742-2094-5-40 [biomedcentral.com]
"The long latent stage seen in syphilis, followed by chronic central nervous system infection and inflammation, can be explained by the persistence of atypical cystic and granular forms of Treponema pallidum. We investigated whether a similar situation may occur in Lyme neuroborreliosis. ... The results indicate that atypical extra- and intracellular pleomorphic and cystic forms of Borrelia burgdorferi and local neuroinflammation occur in the brain in chronic Lyme neuroborreliosis. The persistence of these more resistant spirochete forms, and their intracellular location in neurons and glial cells, may explain the long latent stage and persistence of Borrelia infection. The results also suggest that Borrelia burgdorferi may induce cellular dysfunction and apoptosis. The detection and recognition of atypical, cystic and granular forms in infected tissues is essential for the diagnosis and the treatment as they can occur in the absence of the typical spiral Borrelia form."
In general, people in western countries eating a western diet have such diminished immune systems that they have trouble resisting such infections (including removing the cystic forms).
Dr. Joel Fuhrman has a newsletter article that discusses how he has cured many Lyme patients (he is based in New Jersey) who have been on antibiotics for years (prescribed by other MDs) by improving their diet.
One thing he has on that which is available easily:
https://www.drfuhrman.com/get-started/health-concerns/13/lyme-disease [drfuhrman.com]
"Taking antibiotics long term has dangerous consequences, such as killing beneficial gut bacteria, interfering with vitamin absorption, yeast overgrowth, severe allergic reactions, and resistance to antibiotics; but the main issue is increased cancer risk from antibiotics in the future. Occasionally, people may still feel poorly after being adequately treated for Lyme. They do not need more antibiotics, rather, they need to get healthier and detoxify from the antibiotics they took and the killed spirochetes that have to be dealt with. Long-term adherence to a nutritarian diet can maximize the body’s self-healing potential and can help Lyme disease sufferers to recover quicker and more completely."
The biggest challenge of the 21st century: the irony of technologies of abundance used by scarcity-minded people.
(Score: 2, Insightful) by MikeVDS on Friday June 28 2019, @01:19AM
I have seen many articles and books like this and they make many claims, and there are actual scientific studies that test for many of these things. I am looking for science, not an "expert" opinion, because you can find that saying just about anything you want.