Being someone who has this disease, I can say its much worse than even this article depicts. I was self-diagnosed after seeing over 10 doctors. First was told ahh its Lupus! Then it was certainly some kind of STD, then Rheumatoid Arthritis, then Gout, then reactive arthritis, it wasnt until I looked at my spreadsheet I had kept to look for commonalities that I noticed every one of them said they were "75% sure it wasnt Lymes". I immediately went to anylabtestnow and had a few tests done for common forms of borellia infection and took the results to my rheumatologist. You would think thats the end of it but no, after months of antibiotics I was still not well and still couldnt walk correctly, I ended up at a naturopath in Seattle. All said and done I lost 30lbs, couldnt get out of bed, pain everywhere, symptoms of amnesia, forgetting everything, scoriosis on my eyelids, and all kinds of other really terrible side affects that I wont get into here.
I have it too, and as I get older I'm really feeling it taking its toll on my body. The most annoying aspect is, I knew that you could get it from ticks all my life, but yet .. I blew it off and didn't take it seriously.
One warm summer night, I laid down in the grass in a locally cool field, and enjoyed the stars. I woke up the next day with bullseyes all over me, and 4 of the terrible critters embedded in my flesh.
If only I'd paid more attention, I wouldn't always be operating at 60% ..
Take this one seriously folks. If you're in ticks-ville, pay attention damnit. You don't want Lyme disease.
I've got to wonder if I have this too. For most of my life, I've felt like I'm operating at 60%. Every damn day is a constant battle with energy, and focus, and drive. I've been told its depression, anxiety, or ADHD. Prescribed medication, which I've always refused to take.
As a kid we were always playing in fields. My grandparents owned property in rural CA hills where we used to run around for days unsupervised, wading through tall grass with nothing but shorts and a T-Shirt on.
Did I get bit by a tick? Maybe? To my knowledge and memory, we never did find one on me... But then again, we weren't exactly checking every time we came in. I'm sure in all those years, I was bit by multiple bugs. Multiple times. Could that have injected persistent bacteria into my body that feed on my energy, and constantly drag me down?
Maybe it is just depression. But that sure feels like a symptom, and not a root cause. The root cause of all this is SOMETHING, and blanket diagnoses of ADHD and depression don't satisfy my need for an actual answer. With respect to medical practitioners, I still have to say, at times it feels like we're living in the stone age of medicine.
No, I don't get those rashes ever. I may have as a kid but I certainly don't remember it.
Maybe I should throw in the towel and accept the "you're depressed" argument. 14 years of dealing with 40-60% ... I'm reaching a give up point. Diet, sleep, exercise, all on point for the last 5 years. No improvements.
Get the tests. My practitioners (get multiple opinions always) indicated to me that its not always obvious, and often times people associate the bite with other insects - i.e. spiders and therefore don't bother to screen for Lyme.
Best thing is to screen for the antibodies... but do get multiple tests from different labs.
FYI it's possible to get it without a bullseye rash. Also sometimes the ticks bite you somewhere that's hard to see so you don't notice the rash even if you do have it.
I would presume, you had ticks from a previous encounter as well.
In order to get Lyme, you typically need to have a tick embedded for > 24 hours (meaning a really low probability otherwise). And Bullseye rashes don't occur until a few days after the infection of the bacteria.
No, I don't think thats an appropriate conclusion to make.
Tick embedded >24 hours: not necessarily true per my medical examiners - two independent specialists, as I live in an area with high Lyme rates and wanted a second opinion - as should anyone with doubts about it, and as to the second point, maybe its more correct that I didn't observe the bullseye rash until the next days, but either way multiple tests confirmed Lyme antibodies in the days and weeks following, whereas prior test (wasn't my first attack) didn't ..
Either way, don't lay down in a field where deers and rabbits live, in the middle of a warm, sweaty summer.
It's truly something I wouldn't wish on my worst enemy. The combination of severe disability -- worse than many so-called "serious" illnesses -- combined with utter indifference is crippling financially, socially, and psychologically. I was recently reading someone's post on Reddit, and they said they wished they had cancer instead, because at least with cancer, you either get better, or you die. I mean. You don't want a disease that makes you wish you had cancer.
I read here in a comment here about a person that went through years of antibiotics, to no avail. What finally helped? A 2 week fast. He said he found the idea on some forum and decided to give it a go, since he had nothing to lose at that point.
Very informative & helpful article for someone in my family. this tech guy really did his homework, and has some interesting and unexpected details. Thanks!
There have been some new studies that show that lingering Lyme symptoms are probably caused at least in some cases by "persister" bacteria, that go into a defensive mode during the first deluge of antibiotics and then live to re-infect you after the antibiotics are over. Similar things happen in leprosy and TB if I'm not mistaken. The latest research is about how to kill those persisters. Disulfiram, aka antabuse, is currently in clinical trials, and some doctors at specialty clinics are also using a triple antibiotic cocktail to try to achieve the same effect. I would recommend traveling to one of those clinics if you can afford it...of course they don't take insurance.
Hope you're better. I had a similarly horrifying experience myself. More and more pain pretty much everywhere, tiredness, headaches, GERD - almost every "vague" symptom you could think of, slowly getting worse over months and years, and no answers from multiple specialists. Luckily it wasn't Lyme (which I got tested for). After getting a large panel of lab tests assembled after weeks of online research, I found high calcium levels, and with follow-up tests diagnosed myself with Primary Hyperparathyroidism (at 28 years old, which is rare). Flew to the USA a month later for surgery (the place where they do it best, the Norman Parathyroid Center, is essentially incomparable to everyone else) and now several months later I am much better.
That's amazing that you figured it out. I see a lot of stories like this lately and I wonder why patients have to become diagnosticians for themselves...
As for me, thank you for your kind words. I'm still struggling, and I'm going to an out of state specialty clinic in September. Hopefully they'll do something that helps.
You can have hyperparathyroidism at any age. Mine was found at 15 and at 30 calcium levels haven't been high enough to justify surgery yet (but other tumors stemming from the same root cause have).
How much did you pay for surgury? It sounds like going to the US and paying out of pocket would be very cost prohibitive.
Paid 13200 USD (they don't publish the price on their web page any more, but I suppose it didn't change much). Supposedly their price is one of the lowest (and you get the best care).
How are you now? My cousin has been all over the country for years working to tame hers and she’s found a combination of diet and cannabis to be extremely helpful.
I am better now but still have some aches here and there but its nothing like what it was before, like the person above mentioned I would recommend a fast first and foremost just make sure its a controlled fast and she has a doctor monitoring her overall health while she does it, esp. if longer than 3 days. Me personally I didnt know about the fasting at the time but the doc had me on a combination of the following:
1.Cats Claw
2.Oregano Oil
3.Thorne ATP Formula
4.Corvalen D-Ribose
5.Thorne Adrenal Cortex
This was in combination with a strict diet, I cant seem to remember all the details anymore but it was something along the lines of 0 sugars, 0 carbs, high fats, lots of greens, protein via white meat only. I would also take a look at Stephen Buhner's protocol, the article below is a good read as well.
https://medium.com/p/6e3664fce54f/responses/show
If diet helped - than maybe it was some kind of food allergy that was causing the symptoms not the lyme? Maybe you had lyme some time in the past - and this is why the tests were positive - but the symptoms were because of some food allergy causing Rheumatoid Arthritis.
Diet can play a big factor in autoimmune disorders. proteins leaking from the gut into the bloodstream can trigger a strong immune system reaction which makes the autoimmune disorder flare up.
That is what I was writing about - autoimmune disorder causing the symptoms not the borrelia bacteria. But it is also possible that the bacteria caused the autoimmune disorder first.
It is possible to get an allergy to beef from a tick bite. For an allergy though, one would expect the symptoms to return as soon as normal diet is resumed.
That's easy for someone who isn't grappling with this "non-existent" illness as most mainstream doctors would have you believe.
I spent 3 years (and thousands of dollars) trying to find out what was wrong with me until a neurologist tested me for Rocky Mountain Spotted Fever. It came back positive, he gave me 2 rounds of doxycycline and sent me on my way. Anyone with experience with prolonged tick-borne illnesses can tell you, that's not going to fix it. I went and got an appointment with a lyme-literate doctor (there's the typical 2-3 month wait for an appointment to see any of these doctors - if you're lucky.)
I don't need to be told that tests are unreliable or that doctors can be as misinformed as any of us. I am encouraging anybody in this thread who is personally affected to seek medical advice, not the advice of random internet commenters.
My point is people are desperate - and for some it's difficult to find (or pay) a LLMD. There are groups on FB (one of the only uses I have for FB) with thousands of members who give/get advice. No they aren't doctors, but I wouldn't discount their lack of certification - they have experience.
Unfortunately I have not yet beat it (or whatever other disease(s) the tick gifted me.) I'm still on 3-4 different antibiotics and feeling generally like crap. But it's 'only' been 3 months.
Many people see many doctors, and find no cure and no improvement.
After seeing doctors and not getting better, it is useful to get an idea of what worked for other people because it might lead one on the right path.
Personally, I consider advice - both from doctors and on Internet forums - as advice, not gospel. I do research what doctors recommend, because they too are wrong or implicitly optimize for different criteria than you do (cost of treatment or their own liability vs your well being)
The side effects of Lyme's are not well treated or understood. It's terrible for those effected. Medicine is imperfect and there are still many holes in our knowledge. That doesn't mean you should go to a quack like a naturopath.
This is the wrong incentivization model because it means physicians will do everything to treat the symptoms and not even bother diagnosing the causes.
We already have a pain killer epidemic, and that would make it worse.
You can't cure what you don't know exists, but you can cure that admitting abdominal pain with painkillers and still get paid (with that model).
The point is that diagnostics are expensive, and if you're not going to be reimbursed to run them, you're going to take the risk to find the cause. What's left is curing the symptoms.
Insurance companies are incentivized to not pay anything.
They currently demand that patients do not even go to a hospital, hence the price penalties for going to an ER and lack of preventative care coverage. The only thing an insurance company will demand is what they currently do - the lowest cost, which is an Rx for pain pills.
So if you join a company with terrible infrastructure that needs a ton of work, you don't get paid until it's operational? What if there are organizational issues within the company that prevent you from actually resolving things long-term? Rarely is a single engineer empowered to make a difference in the up-time.
Physicians face similar challenges when it comes to the bureaucracy in the world of medicine, but with the added challenge of working on the unpredictable biology of human beings rather than a bunch of transistors that are predictable in their behavior.
And imagine if the system was setup in the way you suggest, which doctor in their right mind would take on patients where the treatments aren't as clear cut? Who wants to work for months or years with no guarantee of pay?
Honestly, comparing the two fields is pointless. I do not envy physicians. They are working within a broken system and most are doing the best they can. Blaming them will get us nowhere.
There is a movement commonly referred to as "Outcomes-based Healthcare" that is rethinking the way the system approaches treatment. The focus isn't necessarily on compensating physicians for their outcomes, but changing the metrics that are used to evaluate potential treatment options. [https://www.healthcatalyst.com/Outcomes-Based-Healthcare-Top...]
I've been following ZDoggMD for a couple years now and I really like listening to his perspective on the world of healthcare. Check him out if you have any interest: https://www.youtube.com/watch?v=9hEnAmfTBZs
Medicaid and medicare are switching to a value based program, where hospitals and providers are paid more for better outcomes instead of the previous pay for service model where they are effectively incentivized to over treat, and not fix the root cause.
Yes. The check will be in the mail upon receipt of a death certificate. But the form is at the confusion level of a stripper with a W4. Also for some reason we are going to have the postal service manage the reimbursement.
The Chinese healthcare model -- you pay the doctor when you're well -- is an alternative approach. (The doctor is obliged to try to get you well again.)
Congratulations, you've ensured surgeons don't undertake complex surgeries, oncologists pick and choose the less critical cases, and no one staffs hospices any more.
I agree. I think it kind of happens now when surgeons are ranked on their success rates. They start refusing complex surgeries that might impact their ranking.
A number of states allow nurse practitioners, or physicians assistants to do many of the things that only doctors can do in most states, practice independently, admit patients, prescribe medication. But they do not need to go through the match process and residency, so there is not the same kind of monopoly
Nurses and PAs are similarly limited by available slots in their respective educational programs. Our local community college has a 4-5 year wait list for their RN program, as an example.
In both cases, there's a limited number of slots available for what's fundamentally a required educational program, and increasing that number of slots is difficult on a structural and staffing level.
There is no set limit like with the match or residencies. New schools can open up, existing schools can increase class size or run additional classes to match demand, and they have the incentives to do so.
The match can do that, too. 2019's had 6% more, because more programs joined in. There's no set limit; there's a limit to how many slots Medicare subsidizes, but programs are free to offer self-funded slots over that.
Lyme disease is no joke. My neighbor's son found out he had Lyme after being mis-diagnosed with (I think) MS. He was losing motor function, one eye started to go blind, and he was chronically tired. He made a full recovery after being diagnosed but that was several years taken from a person in their early 20s.
I believe I had some sort of tick-borne bacterial illness as well. I felt a scratch on my ankle and found a small tick. I didn't think anything about it and threw it in the toilet. A few days later I started losing concentration, almost feeling out of body. I'd find myself not remembering what I was doing or how I got there. I couldn't read. I would stop mid conversation unable to remember what I was saying. After a week I went to the doctor and Lyme came back negative. Another week passed and he gave me an antibiotic and it cleared up in a few days. It may have been psychosomatic but I have never experienced anything like it before or since. The mark on my ankle has taken almost three years to heal.
My girlfriend was recently possibly diagnosed with MS. I say possibly because the doctor isn't confident - he put it at about 75% likely it's MS - but has no other answers to her symptoms which include numbness that started in her feet and eventually went up to her thighs that lasted for ~2 weeks, as well Barber's Chair Syndrome, and Retinal Vasculitis.
All 3 symptoms have since faded away, and the MRI's weren't conclusive enough to say it was MS, so the doctor is at a loss and working to get her set up with more tests.
What's interesting is she found a tick on her about a year ago, but the Lyme results came back negative. It may be MS but the doctor seems to have enough doubt that I've often wondered if it might be Lyme or something else.
There is currently no reliable Lyme test. The most commonly used test has an accuracy and sensitivity of 50 %. Worthless. A tick bite + weird symptoms = very high change it's caused by a tickborne disease.
The CDC says, "When performed and interpreted in accordance with current guidelines, 2-tiered serologic analysis has a sensitivity of ≈70%–100% and a specificity >95% for disseminated Lyme disease." [https://wwwnc.cdc.gov/eid/syn/en/article/22/7/15-1694.htm]
FWIW it's not technically MS until there's been more than one incident, thus "multiple" in the name. The resultant lesions are usually visible on an MRI. Most people who have one incident to not go on to have multiple.
There's no definitive test other than this: multiple incidents of otherwise-unexplained neural compromise, verified by MRI as lesions on the myelin sheath. MS symptoms are readily addresses by steroids, unlike other similar conditions, so that can also be somewhat diagnostic.
So regardless of how good or skilled your doctor is, some uncertainty is inherent in the disease. That makes distinguishing it from other conditions difficult. If any symptoms recur consider seeing a specialist neurologist.
Thanks for the info. These incidents have all been since the tick bite, but none have overlapped (other than the Barbers Chair syndrome and numbness in her legs...one of which kind of set on toward the end of the other). The MRI's saw some lesions, but they didn't seem to be enough for the doctor to be confident. He did consult with another Neurologist in his office who looked at the MRIs and was 100% confident in the diagnosis, but he wasn't willing to go that far.
Living in DC I guess we're fortunate to be so close to NIH because he is having her visit some MS specialist at NIH which will also include access to better/more reliable MRI equipment. It's been an ongoing process to even get enrolled in the study, but we finally have an appointment for next month so we'll see what happens.
14% of chronic Lyme patients report being initially misdiagnosed with MS and roughly 2% are misdiagnosed with other neurologic diseases, like ALS, Parkinson’s and Multiple systems atrophy.
Not the OP, but my experience with Lyme 25+ years ago in New Jersey was similar. I took oral and IV antibiotics over multiple years. The antibiotics I recall taking are Claforan, Ceftin, Augmentin, Penicillin, Ampicillin, Rocephin, Doxycycline, Azithromycin.
While my symptoms would often improve during/after a course of IV antibiotics, they would always return. I don't ever recall thinking that one of them was what cured me. It was more like the symptoms gradually tapered off over years. I do, however, credit my MD's willingness to aggressively treat the symptoms with my eventual recovery.
Interestingly, both my MD and his wife (also an MD) had Lyme, as did at least one of their children. My advice to people who think they have Lyme is to seek out a physician that has experience in treating Lyme and a willingness to do so. At the time, there was a lot of pressure in the medical community to simply give two weeks of oral doxycycline and then tell the patient that they have to live with whatever remains.
These are the two that sound familiar to me. Doxycycline in particular.
The bite was ~3 years ago for me. I still have the mark on my ankle. It was red and raised until about 6 months ago. Now it just looks like a faint bit of scar tissue.
> I took oral and IV antibiotics over multiple years.
This is not a standard or reasonable treatment for Lyme. Antibiotics will kill it in a standard course. It sucks that you still had issues afterwards. Did they do additional blood tests?
I do not. It was one of the generic broad-spectrum antibiotics. One of those "take two then take one daily" if I remember correctly.
The doctor I went to was equally perplexed. He basically said "you never go to the doctor but you're here. I don't think you have lyme but I don't know what you have. I'll give you an antibiotic and see if it helps."
Brand name for azithromyclin, similar to doxycycline. Both are antibiotics used for a wide variety of conditions where bacteria are known or suspected.
Azithromycin and doxycycline are completely different chemicals; the former is a macrolide, the latter is a tetracycline. Both are used for Lyme (and various other infections).
Sounds like you had Rocky Mountain Spotted Fever, I had the same symptoms and my doctor immediately put me on antibiotics. A few weeks later my blood tests came back with traces amounts of RMSF. It was the worst I've ever felt.
The testing and treatment of tick borne pathogens is a fine line between politics, science and empathy is because many people have been treated poorly by the medical industry. The majority of the symptoms are ignored by physicians or misdiagnosed. In many cases, co-infections or existing immuno-suppressive conditions are ignored by physicians. That's happened to a number of people I know.
It is very common for most practitioners to be ignorant of: HLA DR gene types (can accumulate metals, mycotoxins, lyme toxins, etc), the nature of the Lyme bacteria strains: spirochtte (reproductive, doxycycline susceptible), round bound starvation form (resistant to most antiobiotics), and the nature of biofilm colonies (antibiotic resistant) that exist in nature and our bodies. Furthermore, most physicians do not know what labs and tests to apply to a patient: Igenex and Galaxy labs for Lyme, Bartonella, Babesia, etc testing; c3a, c4a, tgf-b1, mmp-9, inflammation markers.
In short, each human phenotype, genetic expression, and immune context are all highly unique ... which means that every case is different. Inflammation from our immune response is the primary driver of symptoms and is very, very often mis-diagnosed as something else like MS or dementia (happened to a number of people I know). We need a lot more data to finally help educate physicians and bring the vast majority them out of the stone age. We need to educate everyone on complex systems, nutrition, and biology instead of just authority.
>The testing and treatment of tick borne pathogens is a fine line between politics, science and empathy is because many people have been treated poorly by the medical industry. The majority of the symptoms are ignored by physicians or misdiagnosed. In many cases, co-infections or existing immuno-suppressive conditions are ignored by physicians. That's happened to a number of people I know.
My aunt eventually lost her job and had to sell her Austin home after mounting medical bills due to misdiagnosed Lyme disease. She had an early false negative for the disease and spent years chasing "chronic fatigue" cures because there was no explanation for her illness. Once she decided she had chronic fatigue I doubt it did anything to her credibility with the rank and file medical community as that seems to be a generic bucket for a whole raft of symptoms.
She was eventually tested again for Lyme which was positive but by that time it had devastated her financially and physically. She has permanent heart damage, blood pressure issues, regularly suffers minor seizures and has zero energy.
Just reading up about this issue. Root cause for the controversy seems to be difficulty of diagnosis. What prevents development of a "smoking gun" detector for lyme, finding the actual lyme causing bacteria in vivo in humans with symptoms?
There isn't a "smoking gun" detector for Lyme in much the same way that there isn't a "smoking gun" detector for cancer. Diagnosing Lyme with blood tests is only one tiny piece of the controversy around Lyme.
Right, but if you could do it for Lyme couldn't you do it for every bacteria? Blood testing would be our best bet, and we already do that with Lyme antibody testing and Lyme DNA testing. The main problem is that they are very expensive tests (usually a couple hundred dollars, and not always covered by insurance) and thus you need enough clinical suspicion to make the call to get something like that. How do you further increase your suspicion when you have a disease that mimics a lot of other diseases, without breaking the bank?
Antibody testing seems to have wiggle room, which causes people to assume they have Lyme whatever the result. If they believe chronic Lyme is ruining their lives, and long term antibiotics will help, why not take a conclusive test that actually finds the bacteria and know for sure? What's missing from all these anecdotes is that they go from not being sure of the diagnosis, to trying a fringe treatment against the recommendation of multiple medical bodies.
You say all of these things, as a probably-not-100-year-old-human, about a genus of highly advanced shapeshifting spirochete bacteria that have spent the past (perhaps) 500 million years living in the bloodstreams and bodily tissues -- and evading the immune systems -- of billions of mammals and reptiles (and everything between) across the globe.
We only found out about these spirochetes in 1981. That's 38 years ago. You're probably older than that.
Yet you have cited precisely zero sources, arguing by shooting holes in straw men. For the love of <God>, and all that is holy, Sooheon: please base your opinions on evidence.
Not sure what rubbed you the wrong way, these are just questions I have as I read about this topic for the first time, trying to understand the controversy here. I'm not going to have reams of citations for you. If you have citations to throw at me feel free, but from what I can see, reliable medical bodies consider this to be a misdiagnosis at best.
Dna testing is available but has similar problems in that there's no standard to set a cutoff for limiting the number of false positives or false negatives. It's also even more expensive and very unlikely to be covered by insurance.
You can have hundreds of cancerous tumors in your body, each of which is far too small to biopsy. The same is roughly true for borreliosis. You are not making a cogent point here.
People have cancerous mutations all the time, yet those aren't the cancers that kill us. Cancers people die from tend to have grown, to a size you can detect. When someone suffers from life threatening cancer-like symptoms, it's not literally impossible to find whether they actually have it. This seems to be the case for chronic lyme, where the medical consensus is that there is "no reproducible or convincing scientific evidence of any relationship to Borrelia burgdorferi".
Note that this is most likely a population map. That's why Western Mass, Adirondacks, and north of Bar Harbor are nearly void. Each dot represents "patient’s county of residence."
Hmmm; Is the Scientific American's "Observations" section equivalent to newspapers' "Opinions" or "Editorial"?
Because while I agree with overall message ("Let's get serious about battling ticks and diseases they spread"), there is a strange mix of scientific/data-based; political/opinion-based; and just plain emotional imploring. It brings up the highly controversial Chronic Lyme topic right front and centre, but then attempts to steer itself ambiguously away from it (essentially, "Whatever the case, we need to fight it"). Can the author really be unaware of the immediate guard that will go up on every side of that thorny issue?
I'm stunned that you think people in this thread are promoting needless antibiotic use or "endorsing chronic lyme's existence." Please - do link the paper disproving the existence of chronic Lyme.
Say you were diagnosed (via ELISA or Western blot) a few months/years ago with Lyme borreliosis. You take antibiotics for the recommended course, and your health has returned, but your tests are still quite positive. Your doctor(s) recommend continuing the antibiotic therapy.
Would you rather that they terminate treatment despite (a) blood tests turning up positive and (b) symptoms continuing? Are doctors no longer permitted the last word in treating their own patients?
>> link the paper disproving the existence of chronic Lyme.
I mean, regardless of the "side" or "stance", this is kind of the oldest, least honest logical fallacy in the book [1] - you're requiring somebody else to disprove existence of something? How, exactly?
Typically, the burden of proof is on the entity making a claim.
>>Are doctors no longer permitted the last word in treating their own patients?
erm... no?
I'm assuming there's a more profound intent behind this statement, but as it reads, no absolutely not. Doctors are not researchers, they are (to simplify, for purpose of this discussion) expert [and hopefully experienced] appliers of knowledge gained by others, over generations of hard work.
"In case of discrepancy between sticker and system, the system price will be held correct": in case of discrepancy between some random doctor and accumulated body of knowledge, body of knowledge wins.
For example, if my doctor tells me to ingest my own urine twice a day, and CDC & NIH tell me that is bollocks, the doctor empathically does not hold the last word.
----
As to the particulars of your claims when it comes to Lyme, observationally, people actively "shop" for a doctor that will prescribe them the treatment the patient desires. So the last word here is actually typically the patient's. :|
> I mean, regardless of the "side" or "stance", this is kind of the oldest, least honest logical fallacy in the book [1] - you're requiring somebody else to disprove existence of something? How, exactly?
> Typically, the burden of proof is on the entity making a claim.
I would argue here that hycaria is the entity making a claim here: he's arguing that chronic Lyme is nonexistent and essentially fraudulent. The point is that the existence of chronic Lyme cannot be disproved. I'd congratulate you for knowing the concept, but Russell's teapot is completely irrelevant here; if long-term treatment with antibiotics or other therapies is helpful for those who say they have CL, who are you to stop them?
> erm... no? I'm assuming there's a more profound intent behind this statement, but as it reads, no absolutely not. Doctors are not researchers, they are (to simplify, for purpose of this discussion) expert [and hopefully experienced] appliers of knowledge gained by others, over generations of hard work.
This is pretty much completely wrong. Physicians and doctors are a crucial component in the development of new medical knowledge; case studies of patients at family offices and hospitals inform decisions going as far up as the leadership at the CDC. Medicine is a two-way street.
> "In case of discrepancy between sticker and system, the system price will be held correct": in case of discrepancy between some random doctor and accumulated body of knowledge, body of knowledge wins.
I don't know how you drew this analogy, but the logic is a complete farce. Doctors are not robots. If it turns out my appendix is on the opposite side of my body from the medical norm, they don't just chop my intestines off halfway so as to adhere to the "accumulated body of knowledge." Nowhere in science and medicine do you discard real-world data when it disagrees with theory; any doctor will tell you this.
> As to the particulars of your claims when it comes to Lyme, observationally, people actively "shop" for a doctor that will prescribe them the treatment the patient desires. So the last word here is actually typically the patient's. :|
Sure, some doctors will help treat patients who self-diagnose. Wouldn't you argue that this would lead to a higher standard of care, though? Is adherence to standards preferable to a high quality of care? Have you ever read the Hippocratic Oath?
I predicted that I had Lyme after noticing I had Bell's palsy - facial paralysis - a common symptom of borreliosis. Every single test for Lyme, which arrived weeks later, was positive. Would you say that I "shopped around" for a doctor who would give me an "antibiotic fix"?
Why is it acceptable for an aging person to request all sorts of painkillers from their doctor, or acceptable for a patient with late-stage cancer to request experimental and risky therapy from some pharmaceutical startup, but it's utterly abhorrent and should be illegal for someone with Lyme (or whatever) to request, at their own cost, long-term antibiotic prescriptions from their physician?
Why specifically do people like you feel the need to antagonize sick people who are trying to get better?
For the record - I do not have chronic Lyme. Those questions were directed at hycaria.
Chronic lyme disease is the controversial disease where no pathogen can be found anymore, yet the most classical "treatment" offered by some practicians (but not all) is months or years of antibiotics. It's a dramatic misuse of antibiotics, because you're probably not without knowing that resistances emerge from their use, and it has no efficiency.
Two recent free access reviews summing up the issue. Tldr : the very unspecific symptoms are probably real (but not always ie cognitive dysfunction complain that test up normal for age range), probably not because of borreliosis though (since follow up of people who had acute lyme disease brings up a very low number of chronic affection), patients feel unlistened to (sadly always more common and ends up in such defiance towards modern medicine and resort to shady unproven sicknesses and their communities, see electrosensibility too in the same vein), antibiotics are useless.
As such, treatment of this symptom complex with antibiotics is unlikely to be helpful to patients but does incur substantial risk. This, combined with the impact of excessive antibiotic usage on the development of widespread antibiotic resistance among more potentially lethal pathogens, and the significant health care resource utilization and cost associated with prolonged administration of parenteral antibiotics, makes such treatment ill advised.
Three research groups have examined prospectively the effectiveness of prolonged antibiotic courses for post-Lyme disease syndromes.57–59,75 All trials had strict entrance criteria similar to the aforementioned definition of PLDS. The Klempner and colleagues58 study reported 2 parallel trials in which their cohort of 129 subjects was divided into seropositive (n = 78) and seronegative (n = 51) arms. Subjects randomized to treatment groups received 30 days of intravenous (IV) ceftriaxone followed by 60 days of oral doxycycline. Those randomized to the placebo arm received IV placebo for 30 days, followed by an oral placebo for 60 days. The primary outcome was health-related quality of life as assessed by standardized instruments (the Medical Outcomes Study 36-item Short-Form General Health Survey [SF-36] and the Fibromyalgia Impact Questionnaire). These instruments were administered at baseline, and then 30, 90, and 180 days. There was no difference in any outcome measure between placebo and treatment groups in either the seropositive or seronegative arm, or in a detailed battery of neuropsychological tests that was published subsequently.75 Although all patients had complained of cognitive dysfunction at baseline (and this was the primary complaint in >70%), objective measures of cognitive function, such as memory and attention, were normal compared with age-referenced normative data. Depression, anxiety, and somatic complaints improved in both the antibiotic and placebo arms groups between baseline and day 180.
I'm a neurologist, which means I specialize in diseases of the brain, spinal cord, and nerves.
The clinical entity of chronic lyme disease which is undiagnosable by conventional medicine and require months and months of antibiotics is pseudoscience. There is a large industry built to pedal treatments to purported sufferers. I don't want to be disrespectful of the people who report being helped by these treatments, but this is exactly the same situation as vaccinations causing autism: people being convinced by "obvious facts" that are ultimately supported by anecdotes but not science.
The medical community can be wrong, for sure (h. pylori is a great example), but we notice treatments that help our patients, even when unconventional (the FDA approval of cannabis to treat epilepsy is the most recent example).
This will eventually reach the same conclusion as the vaccination debate; hopefully with a lower price tag of dollars and lives.
I am genuinely interested in an elaboration: what is the direct implication of what you are saying?
1. That chronic lyme disease does not exist?
2. That chronic lyme disease and can be diagnosed very reliably
3. Other (please elaborate further?)
The research that shows persistent Lyme is real is piling up but the medical community seems slow to accept this fact.
Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease: "Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined."
https://www.ncbi.nlm.nih.gov/pubmed/29662016
The Emerging Role of Microbial Biofilm in Lyme Neuroborreliosis: "The early treatment with oral antimicrobials is effective in the majority of patients with LNB. Nevertheless, persistent forms of LNB are relatively common, despite targeted antibiotic therapy. It has been observed that the antibiotic resistance and the reoccurrence of Lyme disease are associated with biofilm-like aggregates in B. burgdorferi, B. afzelii, and B. garinii, both in vitro and in vivo, allowing Borrelia spp. to resist to adverse environmental conditions. Indeed, the increased tolerance to antibiotics described in the persisting forms of Borrelia spp., is strongly reminiscent of biofilm growing bacteria, suggesting a possible role of biofilm aggregates in the development of the different manifestations of Lyme disease including LNB."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/
Precision medicine: retrospective chart review and data analysis of 200 patients on dapsone combination therapy for chronic Lyme disease/post-treatment Lyme disease syndrome: part 1:
"We collected data from an online survey of 200 of our patients, which evaluated the efficacy of dapsone (diaminodiphenyl sulfone, ie, DDS) combined with other antibiotics and agents that disrupt biofilms for the treatment of chronic Lyme disease/post-treatment Lyme disease syndrome (PTLDS)."
...
Conclusion: DDS CT decreased eight major Lyme symptoms severity and improved treatment outcomes among patients with chronic Lyme disease/PTLDS and associated coinfections.":
https://www.dovepress.com/articles.php?article_id=44148&fbcl...
In a new study, researchers from the Johns Hopkins School of Medicine have found evidence of chemical changes and widespread inflammation in the brains of patients with chronic symptoms following treatment for Lyme disease.
Imaging glial activation in patients with post-treatment Lyme disease symptoms: a pilot study using [11C]DPA-713 PET
https://jneuroinflammation.biomedcentral.com/articles/10.118...
The biofilm claim surprises me a lot especially in the second one. Honestly their conclusive claim is very far fetched and rather unrelated to their study of the pathways (did you read the paper ?), the journal is very bad (IF of the journal : 3, it's an open access one so you can bet the greatest disruptive papers won't be there), and it seems to me they talk about lyme because their study is on the borrelia family and it makes a shitty paper more interesting.
Third one is great but it's not a randomised trial with a placebo comparison. It has been done before, placebo shows improvement too (see https://www.ncbi.nlm.nih.gov/pubmed/12821733/). It proves nothing.
I don't have time to take at look at the rest, but you get the idea : it's not compelling.
The gold standard in microbiology for diagnosing an infectious disease has always been to culture the organism alive. Despite notorious difficulties in culturing Borrelia burgdorferi, in about 30 studies this organism has been cultured alive from patients despite at least standard antibiotic therapy, and in many cases after antibiotics far in excess of what is deemed curative by IDSA and CDC. If the pathogen that causes a disease is still present in conjunction with symptoms compatible with that infection, it would appear to me that these ‘fundamental questions about the cause of long term symptoms’ should have been answered a very long time ago. To add insult to injury, recent studies from Tulane, Johns Hopkins, and Northeastern University all demonstrate that we can’t even kill Borrelia in the test tube with the currently recommended antibiotics.
What are the chances that a second disease of mysterious etiology but with the same symptoms as the first disease, would come and replace the first disease when there is published evidence that the pathogen which causes the first disease persists despite both short and long-term antibiotics?
There are numerous chronic bacterial infections which require long-term combination antibiotic therapies: Tuberculosis, leprosy, coxiella endcocarditis, brucellosis, Whipple’s. Why should Lyme be different?
The last link in my previous post is very enlightening in how badly Lyme has been mismanaged so far.
The best available scientific studies were conducted by conventional medical science, and show there is no benefit. It's telling that, at the time, "long term" treatment was measured in weeks. After it was demonstrated that there was no treatment effect, the goalposts were naturally pushed back by the chronic-lyme advocates, and now it needed to be months.
Test tubes are profoundly inadequate for this kind of study, because the immune system makes a huge difference. Many antibiotics are bacteriostatic (not -cidal), and don't kill the organisms. But that's enough to give the host immune system an edge, and we wipe it out instead of succumbing to the infection.
If there is a benefit to longer treatments, it should be straightforward for the alternative-lyme industry to perform a similar double-blind placebo-controlled trial and prove it.
That's what happened with the "unconventional" example of cannabis for epilepsy, and now it's available to every patient who needs it, and is covered by their insurance. This example just supports the idea that doctors care about their patients, and want effective treatments to be found. When you have a splinter group of doctors who disagree with convention, create a splinter industry on top of it, and market theories rather than publish data, then my default position is going to be skepticism, and I'm going to try to help my own patients find something more promising (though I would never fault them for trying anything: I recognize they are desperate, and the victim of a con is hardly to blame).
I guess those of us who were bitten by ticks and have been sick ever since are just imagining our illnesses? Why is it that the medical establishment is fine with TB requiring 6 months of antibiotics, but because you can't believe that tick-borne diseases may take months to treat?
It's time for the medical field to actually consider the possibility that prolonged tick-borne illnesses might be real. Is months of antibiotics the best treatment? I don't know, but it's the only treatment option I've been given. It sure beats an army of doctors (2 PCPs, 2 neurologists, rheumatologist, immunologist, and more) trying to convince me there's absolutely nothing wrong with me. Tell my wife, kids and friends that everything's fine - I'm exhausted from the time I get up to the time I go to bed, brain fog, working memory issues, etc. The only test that came back positive was rocky mountain spotted fever (4 months ago) and I've been feeling ill for almost 3 years. But you're right chronic tick-borne illnesses don't exist.
For the record, I would likely believe it was quackery too if I wasn't living proof that it's real.
> I guess those of us who were bitten by ticks and have been sick ever since are just imagining our illnesses?
No, you're imagining the connection between the symptoms and the tick. Even if such a connection is real, the fact that things happened in this order is not evidence of anything.
> But you're right chronic tick-borne illnesses don't exist.
Why the snarky sarcasm? My comment is hidden now, but I thought I said they do exist, and that the pseudoscience is in the chronic, longterm antibiotic treatments.
But your reaction is exactly what parents of kids with autism said: I saw my child get autism after a vaccination. I am it. It happened to me.
Tick diseases do exist, and they have great (conventional) treatments. It can be very difficult to get the right diagnosis, and for your doctor to make the diagnosis.
There are a lot of people out there selling very expensive and completely inappropriate treatments, and it has created endless confusion on the part of the patients who are suffering. It's unconscionable, and when the patients/victims are so convinced that they campaign for it, it's downright tragic.
Just consider how exhalted Andrew Wakefield was by his patients in the day.
Regardless: I'm sincerely happy that you're getting much better.
Your link makes my point perfectly: doctors are open-minded, and have conducted rigorous investigations using meaningful clinical endpoints, and cannot substantiate the anecdotal reports of improvement in spite of a very diligent search. It states:
Posttreatment LD remains a poorly understood syndrome,
occurring in an estimated 10% to 20% of humans treated
under current IDSA guidelines.30 Multiple randomized,
placebo-controlled studies that evaluated sustained
antimicrobial therapy concluded that there is no benefit
in alleviating patients' symptoms and indicated that long-
term antibiotic therapy may even be detrimental to
patients because of potential associated complications
(ie, catheter infection and/or clostridial colitis).31,
32, 33
Where the references are:
Berende, A., ter Hofstede, H.J., Vos, F.J., van Middendorp, H., Vogelaar, M.L., Tromp, M., van den Hoogen, F.H., Donders, A.R., Evers, A.W., and Kullberg, B.J. Randomized trial of longer-term therapy for symptoms attributed to Lyme disease. N Engl J Med. 2016; 374: 1209–1220
Kaplan, R.F., Trevino, R.P., Johnson, G.M., Levy, L., Dornbush, R., Hu, L.T., Evans, J., Weinstein, A., Schmid, C.H., and Klempner, M.S. Cognitive function in post-treatment Lyme disease: do additional antibiotics help?. Neurology. 2003; 60: 1916–1922
Klempner, M.S., Hu, L.T., Evans, J., Schmid, C.H., Johnson, G.M., Trevino, R.P., Norton, D., Levy, L., Wall, D., McCall, J., Kosinski, M., and Weinstein, A. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001; 345: 85–92
I tracked down those studies and the treatments tested were from 30 days to 12 weeks - hardly what I would consider 'long term therapy' that's currently advocated/practiced by LLMDs.
I don't have any definitive answers. All I can tell you is, if you felt as lousy as I feel, you'd be willing to try it given the lack of any meaningful treatment options from the current mainstream medicine that has managed to extract a shitload of my money in exchange for mostly blank stares & shoulder shrugs (or my favorite, passing me onto another specialty, resulting in another 2 month wait.)
> the treatments tested were from 30 days to 12 weeks - hardly what I would consider 'long term therapy' that's currently advocated/practiced by LLMDs
ahh! there is something here. I't subtle but I think it's a really important process you've described:
Conventional medical experts took the anecdotes and lyme theories, and decided to test "long term" therapy that was being advocated by less-conventional but still well-meaning providers at the time. These were the results: they showed there was no benefit.
So conventional thinking moved on, and the now-fringe thinkers simply moved the goalposts. Any scientist is going to be open-minded about the possibility of something being effective, even if they don't understand it. But at this point there are far better places (meaning "likely to show efficacy") to invest research resources.
And the question we're all asking ourselves is: if the alt-medicine community is so convinced that there is a benefit, why on earth won't they perform a randomized, placebo-controlled, clinical trial. We already did several, and published them. If the alt-lyme community still wants to continue making claims and expect to be listened to, they are going to need evidence.
That seems like it should be uncontroversial to me, but here we are.
Written by a woman who has contributed nothing but anti-scientific, pro-chronic Lyme misinformation to the journal (seriously, click on the author's name).
>In 2017, mosquito-borne West Nile virus, which currently infects about 2,000 people annually in the U.S. received $42 million in support from the U.S. National Institutes of Health. Lyme disease, with 20 times the number of reported cases, got half as much, a figure that has changed little in a decade.
Doubling allocations for Lyme research and prevention to $50 million doesn't seem like an unreasonable or overcomplicated request. Congress allocated over a billion dollars for Zika [1] - a disease that something like 10 Americans ever had. How does it make sense that a disease actively affecting 400,000 Americans each year is allocated effectively $0 by the same Congress?
I agree too, even though I would like to see more focus on lyme... I wish they gave more convincing evidence of it being a serious yet comparably neglected disease - they compared to zika and west nile but still don't give a good picture of where it sits on the world stage of infectious diseases.
Prevention is worth a lot here. I've been aware of Lyme for 30 years now probably? (I have lived most of my life not that far from Lyme, CT where it was first noticed.) Because I've been aware of it so long it would get brought up to the doctor immediately if something happened. It would also be very unlikely I would get bit and not notice.
Taking the usual recommended precautions and checking yourself carefully goes a really long way.
Be careful around tall grass. Don't hang around in areas that make it easy for a tick to get on you. Wear clothes that reduce risk.
I've been a very active hiker/mountain biker for many years now. I've pulled a few ticks (<10) off me but I have always found them before they bit me.
Biggest factor I've noticed in the people I know who have gotten Lyme is dog ownership. I would be really interested if someone did a study. It seems Dogs in the house raise the risk significantly. Dogs on a walk behave in the most risky way possible hanging out in tall grass and going everywhere (they're dogs, can't blame them) and they have a nice furry coat that is easy to grab onto for the ticks. Then you need to check the dog and remove the ticks, bringing yourself into contact with the ticks. Or you miss them and now the ticks are crawling around in your house.
Dog owners also seem to wear more casual clothes going for a walk with the dog. The dog drags them into areas they might not have gone on their own. The casual clothes provide more surface to grab onto vs dedicated clothes an outdoor enthusiast is wearing. (Most feel compelled to wear appropriate clothes and at that point you can adjust for tick prevention)
Unfortunately I've known multiple dog owners who have gotten Lyme multiple times.
Check kids really carefully, they're too young to know any better.
Several years ago I went on a hike/hammock camping trip. This was in an `old-growth` state forest and had practically no underbrush. The ground around the campfire area was bare dirt, and I sat/reclined on a ground-sheet and a 'sit-pad'. (two layers between me & the ground).
2-days into the camping I started to feel like I was having a reaction to a bug bite, assumed it was mosquitoes and ignored it.
I got home after 4-days, went to climb in the shower and my wife pointed out that I had several ticks attached to my back. So I grabbed my knife, pulled them off, and watched the area for a few days. (I had my wife circle the red-welts with a sharpie to make sure it didn't spread.)
I was ofcourse concerned about Lyme. Turns out nothing happened, and the redness went down. But I took precautions against getting made a meal of, and I still failed. It was a sobering incident, and I know I was lucky.
If you live in a lyme-tick area, you should have antibiotics on hand at all times.
If you find a tick that's already been on you long enough to cause a red irritation spot, the clock is ticking.
Any time spent on finding a doctor to see, waiting for test results, seeing if symptoms develop, etc. is wasted time.
The sooner you make your body an unfriendly environment to the bacteria, the less time they have to grow and spread.
This means not only antibiotics, but also not eating anything calorie dense, eating fresh garlic and other natural antibacterials, and getting a lot of sleep, when your immune system works best. If you are a weed smoker and it makes you crave food, it may help to take a tolerance break. Coffee will not help you in this situation.
This is a protocol I've learned about from several people for whom antibiotics do not work. I think there's a book about it.
Doctors have told me that a 3-day course is enough to prevent a system-wide infection if you catch it early. Once an infection settles in, a longer course is needed, typically 14 days, which will do major damage to your biome.
So, continental US, excluding maybe Nevada and New Mexico (because desert).
> you should have antibiotics on hand at all times.
So, here is a problem: in US, antibiotics are prescription-only. And no doctor would prescribe antibiotics preventively. They will prescribe antibiotics after a tick bite, but you need an office visit (or online office visit). The only way to get antibiotics preventively is to stash some after a tick bite, or simulate symptoms over a video call.
Really? The CDC [0] shows a total of 4 cases of Lyme in NM from 2012-2017. Looking at that map, it appears to me that the desert does seem to stop the suckers.
> Each dot represents one case of Lyme disease and is placed randomly in the patient’s county of residence. The presence of a dot in a state does not necessarily mean that Lyme disease was acquired in that state. People travel between states, and the place of residence is sometimes different from the place where the patient became infected.
95% of cases come from 14 states, none of which are western. Mountain and Pacific (WA, OR, CA, ID, NV, AZ, MT, UT, NM, CO, WY) states together are around 0.6% of lyme cases nationwide. Many people in these states contract the disease out east, come home, and then visit a doctor in a western state. New Mexico had 3 confirmed cases in 2017, out of nearly 30,000 in the entire US. So no, Lynne disease does not even close to equality abound in New Mexico or the West.
He's talking about oral antibiotics; these tick-borne infections propagate through your bloodstream, so topical antibiotics aren't going to do anything. Triclosan has effectively zero efficacy anyway (since we pump so much of it down our sewers): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4295542/
Unfortunately, since antibiotics are prescription-only, what forgotmypw3 is recommending is effectively illegal in the US. A much better option is to coat all of your clothing in permethrin, avoid wooded/grassy areas, and check yourself for ticks often.
This is correct. The one saving grace of borreliosis is that azithromycin/doxycycline/etc are largely all out-of-patent, so the generics are cheap regardless of where you are.
Lyme has a great young hacker: there's a kid who got Lyme, and she learned how to build an app, connect doctors, start a foundation, and create a self-reporting network of hikers, campers, and outdoors people. Very inspiring!
While the goal seems laudable not sure I follow the purpose of the app. Is it to track ticks in areas where people don’t expect them? Where I grew up you’d be reporting them every other day
I live in TN which fortunately doesn’t have Lyme carrying ticks but other bad things like Rocky Mountain spotted fever and alpha gal (allergy to meat thanks to the lone star tick).
There are several precautions we take every time we go camping or hiking during tick season:
1. Spray permethrin on shoes and ankles.
2. Tuck pants into socks.
3. Leg tick checks during + full body check when we get home and for next two days.
4. Toss all clothes in the drier. The heat kills them. Do not wash first!
5. Shower with T/gel. Still not fully tested but we heard this will kill them!
So far I’ve had a few cases of an attached tick but nothing longer than half a day of exposure. Bleh!!
TN absolutely has Lyme carrying ticks. In Tennessee, between 2004 and 2016, there were 5,950 tick-borne disease cases, according to CDC data.
While those number are not high, there are other reports that indicate the number of infected ticks in TN is growing. And considering that many cases of Lyme go undiagnosed in TN, it is likely that number could be substantially higher.
Light clothes color is another one, makes it very easy to spot them and we found that is pretty effective as first barrier. I avoid permethrin personally because I'm not a fan of it's effect on aquatic life, but I wonder why you only spray shoes and ankles and not complete lower leg for instance? Just guesswork but if I'd count where I found ticks on my clothes in the past year it would be well over 50% lower and upper leg, much less around ankles and shoes. Could be they were all crawling up of course...
Besides the protection means (which are unfortunately necessary as some diseases [not lyme] transmit in minutes), a big problem is the nymphs which can be smaller than a poppy seed, and are the most likely of the tick lifecycle to transmit diseases. If you have a lot of little moles, these buggers are hard to spot: https://www.healthline.com/health/poppyseed-size-ticks-sprea...
The lone star tick and alpha gal allergy is one of my favorite tick borne factoids I like to tell my peers. Just so happens I had a patient with an alpha gal allergy who had anaphylactic shock from a contaminated bun!
Permethrin is vastly more effective than deet. It lasts for weeks, even across washes and kills basically any insect that touches the sprayed areas. Its so harmless to mammals(1) that ranchers spray it directly on cattle.
It is extremely toxic to marine life and indiscriminately kills insects including beneficial pollinating insects. Use with care.
(1) With some important exceptions, thanks to rileyphone for the reminder.
Indeed, so much so that if you have both a cat and a dog, you should not use the standard topical flea treatment on your dog (which contains permethrin) as enough may transfer to your cat to cause serious issues.
Permethrin and DEET have similar efficacies and the EPA says they're both safe to use. The main difference seems to be DEET is applied to the skin and permethrin is applied to clothing.
My understanding is that DEET is a generally effective repellent -- but Permethrin is a highly effective insecticide and a generally effective repellent. It's also nice because you can generally treat a set of clothing with it and the treatment lasts for weeks at a time.
Coming from a place with an endemic Lyme disease problem, I whole heartedly agree with the thrust of the article. I’d add however that in addition to funding and research into tick-borne diseases, there needs to be significant research and funding directed at reducing tick populations in an environmentally safe manner (current methods mostly involve spraying your lawn with chemicals, or applying permethrin to rodents and deer in some ridiculous fashion)
Novozymes took it off the market for tick control for some unknown reason a year or so ago, though it still seems to be available for aphid control. I had some applied to my yard a year ago, haven't seen any ticks since then, however I also eliminated places that mice nest in and had a lot of brush cleared. Been applying Damminex tubes as well.
Lyme is essentially the poster child for an emerging disease related to climate change and human activity. It's an old organism in an ancient tick that had a happy lifecycle of tick-mouse-tick-mouse-tick-deer-tick. Humans took the forest and the predators out of the picture and now the ticks and the deer proliferate at hugely increased rates, and now we're part of the lifecycle of this tick and the Borrelia organism.
Deer are not the primary vector for ticks; they are outnumbered by a factor of 10-100 by white-footed mice and other small mammals. Those animals make the tick's lifecycle, well, tick. This is obviously a simplification; for more details, read in full Richard Ostfeld's "Lyme Disease: The Ecology of a Complex System."
The loss of predators is undoubtedly connected, but it seems unlikely mainstream America will want foxes and wolves in their woods again.
You're oversimplifying as well. What I am basically saying is that our management of our land has resulted in suburban prevalence of this disease through the growth of the deer population and its presence in the suburbs. This is not to say we can manage it back by eliminating deer. We may never eradicate Lyme from the suburbs.
And as bad as Lyme is, if we kept predators like wolves in the civilization-adjacent forests, would it be better or worse --- today's Lyme rate vs the counterfactual wolf attack rate if they stayed?
Yes, big time, because their natural predators have been reduced along with reduced hunting. See [1] for more details about the deer issue in New York. The tick population in the Northeast is absolutely insane. I went camping in one of the "overabundance" areas in that link and killed no less than 10 ticks crawling on me and ripped another 5 or so out of my skin in about a 24-hour period. Compare this to a similar (well-hunted) forest in Texas where I've spent 5-10 days and seen approximately 3 ticks and been bitten once.
I think it is hard to know before the appearance of people who might count, but the loss of the forest means that the deer are browsing suburban areas more and the ticks are becoming more prevalent. Clearly there are no longer any wolves or cougars in the Northeast and that affects predation.
I'm not sure the counterfactual is really relevant. I'm just saying Lyme is the poster child for this kind of problem. My preference would be for more risk from wolves and more diverse ecology, with less suburbia and more forest. If your preference is for whatever causes the least number of deaths then you're going to have to also integrate driving, pollution, carcinogens, etc., into your model.
Just to be clear, there is essentially zero risk to humans from wolves. Wolves present a risk to livestock, and that's the reason humans eradicated them from most of the places they used to roam.
> Yet when patients blame failed tests and treatments for their persistent symptoms, when they seek additional care for Lyme disease, they are often told they suffer from anxiety or chronic fatigue syndrome. They are derided, called anti-science, denied insurance reimbursement.
> They are dismissed in ways comparable to those experienced by their AIDS-afflicted brethren.
In the Alps you can't even go into a mid altitude wood without finding a tick or 2 walking on your dog. Hiking over 1600m is the only way to avoid them. I'm lucky to have a dog with white fur, so I can see them before they bite but it's a constant battle.
I wonder:
1. if we always had them. Probably not, I can't remember seeing that many in my childhood
2. if there's a way to get rid of those or we're forced to have this problem forever.
Has anyone here ever thought of building an army of tick-detector robots powered by solar panels that can go around and grab as many ticks as possible?
So this is actually plausible: the "nice" thing about ticks is that in their questing behavior, they'll grab onto anything that brushes their outstretched arms. Even if it's just permethrin-soaked cloth.
>if we always had them. Probably not, I can't remember seeing that many in my childhood
Depends where. I'm talking dog ticks, not deer ticks, but growing up in Pennsylvania both the dogs and us kids would get covered with them (not exaggerating--talking two-digit numbers) in the meadow or woods.
> Has anyone here ever thought of building an army of tick-detector robots powered by solar panels that can go around and grab as many ticks as possible?
This reminds me of mosquito killing ideas my friends and I would come up with when camping in the south.
I agree it's serious (I've had Lyme disease and so have family members), and there are problems with positively identifying symptoms, but I don't get what this article is asking for?
The author herself quotes:
> For ticks, “proven and scalable control measures do not exist,” wrote three officials from the U.S. Centers for Disease Control and Prevention in 2018.
She ends with "Prevention efforts have failed. Do the work on ticks."
But do what work? She just admitted measures don't exist.
Is she asking for an order of magnitude more funding? New research approaches? Are there even any promising solutions we haven't tried? Or is she just asking for magic?
For someone demanding change, it feels disingenuous to not even give a cursory description of what the current obstacles are or potential avenues for addressing them.
1. Incite outrage, 2. generate clicks and discussion, 3. profit!
E: revisiting this because pure snark adds nothing. I think the heart of the issue is that the tests are inconclusive -- why can't people who care enough look for the B. burgdorferi virus itself live in the blood for a clear-cut diagnosis?
Aside from Lyme disease, I'm also personally concerned about Chronic Wasting Disease. We have deer on our property all the time and all they do is shit and piss everywhere.
This appears to be the deer-form of Mad Cow Disease and apparently the prions in the feces can be spread even after it goes into the ground and in the plants that grow from it afterwards.
There is no case of a human contracting CWD. While CWD can be an issue for the local deer population, it is not something to be worried about. Avoid eating brains, spinal cords, and lymph nodes of deer as a precaution.
My Lyme story is probably one of the less dramatic posted here, but it is telling that I feel like I was relatively taken good care of compared to many others here and elsewhere. My first symptom was the classic erythema migrans (bullseye rash), which was painful on its own, but given that this was during summertime in southern Italy it got unbearable at times. I saw a doctor who told me I had probably been bitten by a spider or lizard, but nothing to worry about. I asked him about Lyme but he insisted there were no ticks in Italy (!)... Eventually I got low fever and terrible upper joint pains, as well as deformed nails and fingers (the second stage of Lyme). This was still not enough for the doc as again, there are no ticks in Italy... After a short time Bell's palsy kicked in (severe facial paralysis and a drastic change in taste in my case) and then I knew that I was 100% dealing with Lyme. So off we go to Italy's main institution for infectious diseases where they tap me for an insane amount of blood to analize, and tell me I will stay at the hospital for maybe a week. Tests came back and Lyme was positive, even though there are no ticks in Italy... I ended up staying at the hospital almost two months with antibiotics pumped intravenously multiple times a day for hours. After recovering I had to go to the hospital for health controls every 2-3 months or so for a around a year.
And I was lucky enough to go through this during a time where antibiotics are still effective at fighting bacterias. One of my biggest fears is entering a post-antibiotic era, where bacterias grow resistant at a faster rate than we are discovering new antibiotics. If we keep misusing them, to erroneously treat ourselves, to feed livestock, pumping the rest products into rivers, this might not be such a far fetched scenario.
If you're interested in the intersection between Lyme disease and investigations into it being a bioweapons program gone wrong there's a recent book on the subject.
I haven't read it, but I heard an interview with the author and the book sounds well researched. It doesn't reach a definitive conclusion that Lyme came from a bioweapons program gone wrong, but it does talk about other bioweapons programs similar to Lyme.
Can gene drive be used against ticks? Mosquitos get many defenders who claim they are important as food for other species, but even that argument can't be used against eliminating ticks.
Borrelia burgdorferi (the pathogen that causes Lyme) was named after Willy Burgdorfer. Burgdorfer claimed that the disease was the result of a biological weapons program that went awry. This is an interesting read: https://www.amazon.com/Bitten-History-Disease-Biological-Wea...
>Some claim that Lyme disease was introduced into the northeastern region of the U.S. by a man-made strain of Borrelia burgdorferi that escaped from a high containment biological warfare laboratory on Plum Island. However, there is ample evidence to indicate that both Ixodes ticks and B. burgdorferi were present in the U.S. well before the Plum Island facility was ever established.
What a lazy "debunking". Of course creating a strain of bacteria would require the original bacteria to already exist.
Discredited and debunked are words that desperately need to be retired. The vast majority of the time, they much more accurately could be replaced with "unpopular" or "disliked by the authority I'm about to appeal to".
There's some healthy doubt to be cast on concepts like "Chronic Lyme." Consider, for one example, the data here: https://lymescience.org/washington/
In this thread a poster claims that multiple doctors couldn't save them until a "doctor" with "natural remedies" put them on a fast.
Now, I support skepticism all around; it is very healthy to get second and third opinions when you know your body doesn't feel right. But it's also extremely important to trust actual expertise over self-diagnosis, Facebook groups, and so-called medicinal practitioners who hawk herbs and starving oneself as panacea.
this summer, I got a tick bite. I immediately went to go get a prophylactic antibiotic (doxycycline). You'd think that the pharmacist could just give me some over the counter, but I had to go to a clinic and get a prescription – felt kinda absurd.
I wonder how much Lyme disease is attributable to the inconvenience of the process, especially in USA where American are scared of obscure + outrageous medical fees.
We don't want 99 people taking antibiotics for every one who gets cured (about the rate most tick bites have of giving Lyme disease), so maybe a bit of gatekeeping is appropriate here. At least to ask "Has it been on you for 36 hours?"
Antibiotics have a major effect on your gut flora and I don't take them lightly.
That sounds bad, but what's the 'false negative' penalty? (Not getting antibiotics when you needed to). Pretty high - getting Lyme disease. If it was your kid, I'm thinking we'd all do it.
One thing I must have messed from the article is: why are we not already serious about it? There was this comparison to AIDS, but AIDS had the whole horrible “moral” stigma against diagnosing and treating it. What ax to grind do people have with Lyme disease? Why are doctors misdiagnosing or deliberately ignoring it? What are the incentives? I don’t understand.
Your confusion is understandable. What the article fails to mention is that, although Lyme disease is very real and is increasing, the disease referred to as "chronic Lyme disease" is not recognized by physicians as either Lyme disease or as an infection, but is more commonly classified alongside things like chronic fatigue syndrome and fibromyalgia as legitimate suffering from an unknown or poorly-understood cause (but not from infection). Other people, like the author of the linked article, disagree, and think that doctors are mistreating these patients. So there's some controversy.
I'm curious why there isn't a "smoking gun", i.e. the actual Lyme causing bacteria being found in vivo rather than these inconclusive diagnostic tests and questionnaires. Seems like the first step to Getting Serious.
You can detect Lyme in the bloodstream, but it's much easier and hundreds of times cheaper to look for the human immune response - IgG and IgM - with a Western Blot or ELISA. The actual Bb spirochete is so dilute in the blood that a PCR test (costing upwards of $5k) is typically the only thing that will definitively detect it.
The "getting serious" bit is a policy request: why is the federal or state government paying so little attention to an issue that affects and injures hundreds of thousands of people per year?
There's all these linked stories of people suffering for years not knowing definitively what they have, a 5k test to diagnose for sure seems like a bargain. I don't understand why the CDC says chronic lyme doesn't exist and suffers claim they think it does but they don't know for sure. Why not settle it with a real test?
- In my country, Lithuania, tick-born diseases have been increasingly becoming a major problem. We had them for some time, but I think the problem has been amplified by the climate change in the last few decades. At least, the summers got hotter and the winters certainly start later than they used to in my childhood.
- Ironically, cleaner environment and stricter EU regulations on the use of pesticides and other chemical compounds also played a role: tick population is flourishing. The government doesn't have or at least cannot come up with some means to control it. Spraying forests with some chemical compounds would certainly produce serious side effects and would do more harm than good (unless something new gets invented). There have been some discussions in the parliament to raise the issue at the EU level.
- There are essentially two main diseases: tick-borne encephalitis (TBE) and Lyme disease. They are both very nasty. There is a vaccine from TBE. Unfortunately, vaccination is not universally funded or compensated by the government. Only for certain groups (forest rangers, members of the armed forces, etc). Nevertheless, a lot of people
(including myself) get vaccinated and it's one of the most popular vaccines.
- Apparently, there is also a vaccine from the Lyme disease: https://en.wikipedia.org/wiki/Lyme_disease#Vaccination . In 2000s, it was tried in the US, but then subsequently pulled out from the market. It is unclear whether the vaccine really had side effects or it was due to anti-vaxxers.
IMO, more effort should be put on: 1) large scale vaccination 2) research on possibilities to control the tick populations.
In 2016, the US FDA approved a canine Lyme vaccine called VANGUARD crLyme [1], and the principal investigator behind its development (Richard Marconi) is working toward a human vaccine [2], so there's hope; availability is still probably years away.
Most of the comments here are about Lyme's disease in deer ticks, but what really terrifies me is the Lone Star tick. This alpha-gal syndrome epidemic appeared out of the blue in the 2000's and gives you a lifelong allergy to red meat.
I've been really impressed with the quality of journalism from Taylor Quimby, Sam Evans-Brown, and that team on other stories. They've had stories where they mention openly that they changed their view halfway through, or have a reasonable debate among the reporters. I find that really refreshing.
If you get the signature bull's eye, you are lucky. My kid got it and we were able to recognize the textbook bite signature, in addition to her high temps and fever symptoms. They were able to test for Lymes and then aggressively do the IV antibiotics regiment.
As an avid camper, I treat all my clothing gear with Permethrin. In addition to keeping the flying bugs off you... they also keep the ticks off. I treat the tick 'entrances' and socks, which makes a huge difference for the normal ticks.
I know people are concerned about using gene drives on native species, but why don’t we use it against invasive species. Lantern flies in PA seem like a good example.
I am close to someone with Lyme disease, and it's far more serious than I realized in terms of impact on day to day life. What I've learned is that it doesn't get the kind of funding or research as other debilitating diseases because it's relatively rare and hard to diagnose, so there's simply fewer people who go into medicine with a personal connection to it.
I have noticed that certain family members are somehow attractive to ticks. On the same forest walk , my mom would always be blessed with a tick while me, my dad and brother never. Off course this is a very small sample size but consistent for literally my whole life growing up across Europe.
I tend to fairly carefully but rapidly pick my way along a trail. My wife and kids do not. I'd imagine this varies the rate of exposure to things like foliage on the edges of the trail.
I do the same. I live within 200 feet of trailheads and hike all the time. I watch for areas of trails with overhanging plants, and avoid touching them as I walk by.
I have also started treating my hiking boots, hiking pants, and shirt with Premethrin. If you are careful, getting Premethrin into the general environment can be avoided.
It's probably similar to how some seem attractive to mosquitoes more than others. My wife definitely gets them worse than me, and to boot she gets big welts from their bites while I only itch for a few hours.
Same for me - mosquitoes and ticks love me. I guess it is related to blood group - A+ (0+) is the worst group to have. While I believe there are more components that might be important.
Serious question: do you think more could be done to help bring awareness to patients to encourage earlier screening for Lyme disease and other tick borne diseases? I remember being told that if I ever saw a tick on my skin or if I had a target sign rash on my body that I should 1) take the tick with me, and 2) go to the doctor.
At least then you have a record of potential Lyme exposure in your record and it can be brought into the differential diagnosis as a reason for your symptoms in the future.
Like a public health campaign where you had some ads especially in wooded areas that are Lyme endemic areas.
I think back to things like the BE FAST mnemonic (balance, eyes, face, arm, speech, time) for stroke awareness, and feel like many people don't even know that.
> It's Time to Get Serious about Tick-Borne Diseases
I was diagnosed with Lyme disease two years after a tick bite in Nth Germany. A strong course of antibiotics cured me of the disease. At the time I got to learn of the chronic Lyme community (typically self diagnosed) and what the specialist doctors are saying.
It seemed to me that the range of possible symptoms of this disease, and the difficulty in diagnosing it, make it a nice excuse for other problems somebody might be experiencing.
Ultimately, the best evidence I saw - the people in the hospital diagnosed with Lyme disease tended to have identifiable symptoms, e.g arthritic joints, while the self diagnosed complained of feeling unsociable and not motivated to continue with working.
This is a pretty limited definition of "vanquished":
>The available Lyme vaccine came with several immediately apparent limitations. First, the vaccine efficacy of <80% meant that 20% of fully vaccinated individuals could still get Lyme disease [20]. Second, achieving full protection required three vaccine doses given at the time of the initial dose and 1 month and 12 months after the initial dose. Third, the vaccine safety and efficacy database lacked tests in young children, a population at high risk of developing Lyme disease [3]. Also the vaccine was effective only against the predominant North American Borrelia strain without necessarily conferring protection against international subspecies [16, 22]. Finally, uncertainty about the length of vaccine-induced immunity implied that recipients might need booster vaccine doses as often as every year to prevent waning immunity.
Keep in mind that vaccines against diseases where the vaccine efficacy is relatively low, and/or the primary reservoir and transmission vectors are not human-to-human contact, are not nearly as effective as those in which reservoir and vector are human.
Vaccinating against measles or HPV makes a tremendous amount of sense, as the disease can be entirely eradicated. At best with Lyme, human occurrences could be minimised (and especially for high-risk individuals).
Mind: I'm going off general knowledge and reasoning, not close awareness of specifics here, take with ample salt.
How about the French pharmaceutical company that shelved their vaccine before GlaxoSmithKline's? I will try and find the article, but as I remember it, their vaccine worked on the OSPa protein and had a number of proven and harmful side effects. It turns out that the Lyme bacteria is hard to vaccinate for since it can change its outer surface proteins to evade the antibodis pretty easily -- in the end, the immune system is much better on its own than relying on a vaccine.
"Vanquished" is a bit too strong, but I agree, it's really frustrating that we know how to make a vaccine but have decided to not manufacture it anymore.
Some of the reaction to the original LYMErix was almost certainly overblown but it also wasn't a great vaccine for a lot of reasons. One can reasonably ask if it should have pulled from the market, but it was a long way from a silver bullet.
We somehow came out of that same Vox article with very different impressions. 90% effective against the North American strain of Lyme for everyone 15 and older sounds pretty darn great to me. I certainly want it.
It's great that there is a new vaccine under development, but it's likely years away, if it even completes its later phase trials at all. How about we use what we have?
The GPs comment has a link to a Vox article that indicates that "Lymerix-triggered arthritis" was never more than a hypothetical posed by some of the members of the FDA review board.
No hard evidence of that condition exists. In a sample of 150,000 recipients, only 59 people later reported arthritic symptoms later - no higher than unvaccinated rates.
The vaccine was withdrawn before additional studies could provide full empirical evidence that there was no relationship, granted. But the preliminary samples for a lack of full study seem to show the vaccine was just fine, but for some reason the market got spooked.
It's also a vaccine that, among other things, probably required multiple shots and maybe annual boosters.
To be sure, Lyme has become a bigger problem since that vaccine was pulled and, with the benefit of hindsight, it probably should be available for high-risk adult populations in spite of the risks.
Of course, it would probably have to be added to the National Vaccine Injury Compensation Program so the manufacturer couldn't be sued. Probably academic anyway as there is hopefully a better vaccine from a French company in the pipeline.
We would already have a vaccine against lyme, anaplasmosis, etc if they were diseases that affected rich people. But since it’s mostly poor people living out in the woods that get Lyme disease, nobody cares. Nobody important anyway.
I'm a deer hunter. I'm out in the woods scouting a few times in the late summer, then I'm out there every day in the fall for about two months.
I treat everything with permethrine: clothes, socks, boots, hats, orange vest, backpack, ground blind, even the tripod chair I sit on in the blind. Permethrine, derived from the chrysanthemum flower, kills ticks (as well as ants and bees). If one lands on your pants or shirt, it will quickly die. But permethrine is considered harmless to mammals once it's dry. It also doesn't hurt to spray some deet on your exposed skin (face, hands etc.). Permethrine survives several washings.
As soon as I come back from a hunt, I strip and take a hot scrub shower. This is probably the best way to rid them from your body before they latch on, which usually takes a few hours up to 24 or so before they settle in a desirable spot.
Reducing the deer population is an excellent way to reduce the adult tick vector; deer can travel quite far and spread tick populations quickly.
The nymph phase of the tick life cycle is slightly different; they are on mice and other rodents until they reach a certain size. You can actually reduce this population by putting out tick tubes everywhere in your yard, under brush, under wood piles, wherever rodents might tend to go. The tubes contain cotton or dryer lint sprayed with permethrine; the rodents take bits of the material back to line their nests, and it kills the baby ticks. I do this every spring, in the hopes it will rid the vicinity of many ticks.
Lyme is serious business and once you get it, it can take years if not forever to get rid of. Lymerix was a vaccine developed in the 1990s that was about 80% effective, but unfortunately an anti-vaccine group sued the company successfully and they pulled it off the market. The CDC subsequently determined there was no validity to the plaintiff's claims, but by then the deed was done. Probably hundreds of thousands of people suffer from Lyme today because of this lawsuit.
There are new vaccines in the pipeline that sound very promising; they target common proteins among the family of Lyme bacteria (there are about a dozen known species of borrelia bacteria) so that one shot should protect you. Of course, promising doesn't mean guaranteed, so we'll just have to wait and hope this thing can be beaten.
In the meantime, we can focus on attacking the vectors: reduce the overpopulation of deer and rodents that carry the ticks, encourage more use of permethrine and other insecticides. Monhegan Island, off the Maine coast, had 25% prevalence of the disease until they eradicated the deer population (originally brought there in the 1950s-60s as a tourist attraction) and new cases of Lyme went down to almost nil.
We can encourage more predators like hawks and owls and snakes, all of which work to keep the rodent population in check. Flocks of birds eat ticks, but bird populations have greatly decreased in recent decades, so we might think about ways to bring them back, perhaps through reforestation and limiting exurban development that removes habitat.
My roommate recently fell asleep in a hammock and woke up covered in currently feeding ticks and tick bites from ones that had their fill and left. It's been about 3 weeks since then and he doesn't seem to have any forgone symptoms. It seems odd to me that... is he just lucky?
Over the course of my life (I am in my mid 30s), I have gotten probably 75+ tick bites.
When I was a kid I lived in the country, about 20 minutes from the nearest town and would have a tick-check every time I returned from being outside during the times when ticks are more prevalent.
Many times you would have ticks but they didn't get a chance to bite yet (Thankfully my parents did these tick-checks all the time, I hated it at the time but looking back I understand their concern).
I usually get at least one a year (tick that actually bites me), and although recently (Age 30+) I have been getting them checked out/monitor them more closely than when I was a younger, I've been lucky myself to not get this disease or any other ones related to ticks yet.
If anyone is curious as to this location, I live in the Upper Peninsula of Michigan.
Wow, I thought if you were not walking next to grass you were safe! Most ticks don't climb higher than about the height of a raccoon because that's where all the hosts are.
The first point sounds pretty farfetched, do you have some sources to back this up, or is it just a conspiracy theory you cooked up because it suits a narrative? Tye second point is ridiculous, you could make the same argument and say that lyme disease is being kept around to prevent people from hiking or camping or doing anything outdoors at all. BTW in case it isn't obvious you're being downvoted to oblivion because this is not a political site and you politicized your post in the very first word.
If anything, the prevalence of Lyme should promote gun-related activities to hunt the huge deer populations in Lyme-heavy areas! OP is way off base I think...
Throw away account here. Writing on mobile so excuse the short sentences. Been dealing with Lyme disease since 2011. Main symptoms have been fatigue (both mental and physical), brain fog, headaches, migraines, cold extremities.
Anyone reading this dealing with Lyme has I'm sure heard of many different treatment protocols to get better. In fact, I've got a list of over 50 treatments from doctors and patients I've saved in a spreadsheet.
To keep it short, I've tried many different treatments and have been very skeptical of most of them and most have not had any meaningful improvement.
Talked with a contractor who was doing work for me who had to close his business because of chronic Lyme. He tried all different doctors and protocols and he found a solution that cured him. It's going to sound crazy and I'm sure it will get downvoted but I'd rather get the information at least out there for anyone to consider. The contractor mentioned this guy called the Medical Medium. This medical medium guy says science actually is wrong about Lyme being bacterial, but is actually viral. I know it sounds crazy. I know there is no science behind it. Try to keep an open mind. I eventually read the theory behind it, tried the protocol, and am now 5 months into it. Best I've ever been in terms of symptoms.
Again, I'm a guy who only follows science. I don't try to get into stuff that is considered out there, but I was desperate enough to at least consider it and try it. Maybe read it and consider it. And please don't say I'm spreading unscientific information. I know that I am but for people who have an illness without a defined solution, I think it's sometime good to being open to considering an unconventional approach.
Medical Medium is bullshit. Dude claims a spirit from the future psychically communicates advanced medical knowledge to him alone... garbage like celery water curing autoimmune diseases.
His website has an extensive legal medical disclaimer that basically says "none of this is medical advice, if you listen to me it's all on you"
