Time to Get Serious about Tick-Borne Diseases
blogs.scientificamerican.com
blogs.scientificamerican.com
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
Anyone reading this with a therapeutic need should see a doctor, preferably more than one.
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.
Congratulations on beating RMSF.
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.
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)
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.
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.
My wife diagnosed it over Snapchat. After that, the Physician she had been seeing agreed. (edit, Wife is a doctor of Physical Therapy)
The longer I live, the less I think Physicians deserve their Monopoly.
That way, physicians would have an incentive to actually cure people rather than bill them for some inconclusive diagnostic tests.
Also, insurance companies are an opposing force here.
Shouldn't I get payed for the work my software does, without interruption, day after day after day?
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.
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
Is it:
- Increased capabilities gained?
- Risks avoided?
- Alternative opportunities enabled (I babysit your kids, you get a night on the town)?
- Enablement of specialisation, expertise, and concentrated and efficient use of capital?
- Other?
Probably some combination of these.
Managing conditions is clearly a useful outcome.
Avoiding conditions is even better.
Payment based on some quality outcome measure -- QALY, or quality-adjusted life-years is one such standard.
https://en.wikipedia.org/wiki/Quality-adjusted_life_year
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.)
We already have a pain killer epidemic, and that would make it worse.
Painkillers treat symptoms but they don't cure anything.
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.
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.
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.
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.
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.
Also, you've got to get multiple tests if you suspect it. One point of data does not certainty, make ..
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.
Best thing is to screen for the antibodies... but do get multiple tests from different labs.
Always get a second opinion on matters like this - not only can labs get things wrong, but so can doctors.
Of course, this is easier to do in a country that has adequate health care for its citizens, as is the case for me .. so, ymmv.
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.
How much did you pay for surgury? It sounds like going to the US and paying out of pocket would be very cost prohibitive.
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.
And how are you doing now ? out of the war zone ?
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.
I'm actually surprised to hear such an accurate description from someone else, as my Googling has turned up very few matches so far.
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."
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.
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?
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.
https://globallymealliance.org/about-lyme/diagnosis/testing/
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.
Source: more experience with it than I'd like.
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.
The Lyme test only measure antibodies, not bacteria. That means if you get tested too early in the disease process, you might come up negative.
I think it's worth it to check it out.
https://www.lymedisease.org/lymepolicywonk-lyme-neurologic-m...
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.
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.
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.
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?
>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?
[1] https://www.statnews.com/2016/09/28/senate-approves-zika-fun...
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?
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 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.
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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4440423/
Extract :
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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/
Extract :
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.
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.
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.
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.
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.
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
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 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.)
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.
Thanks for sharing your expertise.
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...
Three-antibiotic cocktail clears 'persister' Lyme bacteria in mouse study: https://medicalxpress.com/news/2019-04-three-antibiotic-cock...
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...
Disulfiram–breakthrough drug for Lyme and other tick-borne diseases? https://www.lymedisease.org/disulfiram-kinderlehrer/
Obstruction to Treatments Meeting International Standards for Lyme and Relapsing Fever Borreliosis Patients: https://waset.org/Publications/obstruction-to-treatments-mee...
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 last link in my previous post is very enlightening in how badly Lyme has been mismanaged so far.
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).
Is this civil?
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.
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.
Does this mean oral or topical? And if topical, would tryclosan be enough?
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.
Triclosan has little effect on anything except being toxic to humans and wildlife.
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.
TL/DR: if you are in US, you're fucked.
> 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.
https://www.cdc.gov/lyme/datasurveillance/tables-recent.html
My sister and a handful of close friends have been temporarily paralyzed to varying degrees because of it.
No, you should not be treating yourself with antibiotics. That may help contribute to antibiotic resistance. Visit a doctor and get proper course.
> This is a protocol I've learned about from several people for whom antibiotics do not work.
That's not a thing.
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!!
https://www.consumerreports.org/insect-repellent/how-deet-an...
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.
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.
Be safe out there!
https://www.novozymes.com/en/advance-your-business/agricultu...
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.
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?
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.
https://blog.nature.org/science/2013/08/22/too-many-deer/ https://www.scientificamerican.com/article/do-we-really-need...
The loss of predators is undoubtedly connected, but it seems unlikely mainstream America will want foxes and wolves in their woods again.
https://aspenn.com/lyme-disease-ecology-complex-system-richa...
> They are dismissed in ways comparable to those experienced by their AIDS-afflicted brethren.
The Atlantic just published a good article about this: https://www.theatlantic.com/magazine/archive/2019/09/life-wi...
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?
This reminds me of mosquito killing ideas my friends and I would come up with when camping in the south.
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.
https://www.bizjournals.com/triangle/blog/techflash/2015/03/...
https://www.wdbj7.com/content/news/VMI-built-robot-will-hunt...
2. Yes. The main issue is that nobody wants to pay for the robots, although they're extremely effective: https://www.cnet.com/news/military-robot-deploys-co2-to-lure..., https://ieeexplore.ieee.org/document/1594003/?arnumber=15940...
Growing up in Austria we regularly got shots for tick-borne encephalitis (https://en.wikipedia.org/wiki/Tick-borne_encephalitis). Ticks not only existed but have been known to be problematic for quite some time.
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?
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.
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.
<https://www.amazon.com/Bitten-History-Disease-Biological-Wea...
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.
What a lazy "debunking". Of course creating a strain of bacteria would require the original bacteria to already exist.
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.
Antibiotics have a major effect on your gut flora and I don't take them lightly.
https://royalsocietypublishing.org/doi/full/10.1098/rstb.201...
Ticks (and tick-borne diseases) will become widespread as the world is warming.
Lyme borreliosis is persistent and hard to kill once it establishes itself in the form of biofilms/plaques: https://akademiai.com/doi/abs/10.1556/1886.2015.00049
Lyme is a common term for a bunch of different infections (borreliosis, babesiosis, ehrlichiosis, anaplasmosis), while AIDS is just a single virus.
AIDS has been known to the medical community decades longer than Lyme has: https://www.bayarealyme.org/about-lyme/history-lyme-disease/
Lyme is known as "the great imitator" as it is so often misdiagnosed: https://drjaydavidson.com/lyme-the-great-imitator/
Lyme borreliosis may be transferred in utero, so a child could be born with latent infection: https://www.tandfonline.com/doi/full/10.1586/14787210.2015.1...
There is a huge controversy raging between ILADS & ISDA over the characteristics of Lyme in general: https://www.lymedisease.org/idsa-guidelines-removed-ngc/
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?
- 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.
[1] https://www.zoetisus.com/products/dogs/vanguard-crlyme/
[2] https://news.vcu.edu/article/VCU_researcher_develops_Lyme_di...
https://www.patientzeropodcast.com/
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.
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 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 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.
Huh? Which one is it?
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.
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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/#idm140...
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.
https://www.vox.com/science-and-health/2018/5/7/17314716/lym...
There is apparently a new vaccine in the works. https://www.healthline.com/health-news/lyme-disease-vaccine-...
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?
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.
Hepatitis C vaccine also requires multiple shots (3), though no annual boosters. What's the problem?
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.
>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.
https://www.vox.com/science-and-health/2018/5/7/17314716/lym...
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.
Either this means more diagnoses or more people being infected
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.
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.
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.
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"