New studies offer insight into Lyme disease’s treatment, lingering symptoms
news.northwestern.edu
news.northwestern.edu
That same year I was bitten and had a super itchy spot near my private regions. It was crazy itch and made a bullseye rash. I went to a clinic and they said they had never seen the bullseye rash and it was textbook Lyme disease (or one other common tick disease). Same was treated with Doxy and was fine. It’s an strange disease because if caught early super cheap antibiotics work well… but if has spread through your body it can take years to recover and be quite serious!
It took a physician's assistant, who happened to see me one day when both of my doctors were on their third extended vacation of the quarter, to hear my plight, take my suggestion of gout seriously, and do the leg work, also revealing to me that "full test panels" don't include uric acid by default and that my doctors had been lying to me about their thoroughness.
The assistant was also massively more knowledgeable about the disease, its history, the history of treatment, etc., and disease in general, than either of the two doctors running the clinic. Really opened my eyes.
Our bodies are such strange mechanisms.
Ha. Do you still have symptoms? If not, yea just a bad initial diagnosis. If you do still have symptoms sometimes though, it should be noted that gout is hard to test for when you're actively experiencing aggravated symptoms, as the uric acid crystals are lodged into your tissue and not freely available in the blood stream / urine. This exacerbated everything quite a lot, as when I was much younger I definitely got uric acid tests done when my symptoms were at their worst.
> The global gout prevalent cases in individuals aged 15–39 years was 5.21 million in 2019, with the annual incidence substantially increasing from 38.71 to 45.94 per 100 000 population during 1990–2019
So while marginal, it is either getting more prevalent for younger men over the last 30 years, or we are getting better at catching it.
What's interesting is all of the older men I've met with gout describe moderately uncomfortable pains, I was surprised to learn that my case is exceptionally intense, debilitating enough to be a physical handicap at times (along with sciatica, fused discs, flat feet, some other little things and possible fibromyalgia) which has plagued my life since I was in my teens.
It's been a horrendous disease that has greatly impacted my ability to be as active as I'd like, and sometimes during a flare-up it's extremely difficult just to walk to my bathroom. Flare ups sometimes happen constantly and sometimes I get a month or two of reduced symptoms.
Another thing is that I don't eat meat, and I rarely drink, which are the two biggest aggravators of symptoms. When the doc told me I needed to cut those things out I laughed, and they said they were very surprised that my symptoms were so bad given that I already avoid the most offensive foods.
I'm also currently trying to pin down another autoimmune disease. From what I know, I don't speak to him, but my father has been in and out of the hospital his whole life and it took decades to pin it down as lupus. I am wondering if he lacked the butterfly rash because I don't have one, but otherwise have basically every symptom of lupus, but it also could be fibromyalgia or even MS. Combined with the gout though, I feel 40 years older than I am, almost every little tissue and bone and muscle hurts from head to toe (literally toe, gout keeps one of my toes at a constant level of pain).
Add to that:
- They have a lot of patients and not enough sleep.
- They need to pay back a huge student loan.
- They hold terrible responsibilities and risk being sued.
- They don't have much time for themselves, let alone update their knowledge.
- Most patients are overreacting idiots, so it's a winning strategy to ignore what they tell you most of the time.
- They are not trained nor selected for empathy or open-mindedness.
Basically, you have to double-check everything they do, and endure their cynical rebuttal when you make suggestions, ask questions or try things they didn't request.
I had to face many such errors myself, two almost lethal.
When you can, shop for one that is both good and is open to discussion. But even then, there is a limit. At some point, your doctor WILL fail you, so you have to take responsibility, usually when you're weak and at a low point in your life.
And if you are wrong, people will tell you you should have listened to your doctor, but if the doctor is wrong, well, shit happens.
One of my practitioners is a friend of 15 years, I literally lived with him, he is considered top in his specialty. I'm surrounded by people working at the hospital.
He saved my life once.
Even that is not enough. I still have to double check stuff every time.
This is an industry that places people’s lives as vastly less important than minor scheduling issues as someone working 12+ hours is seen as perfectly normal.
Says the programmer who is giving an opinion on a field that is not his...
He was reportedly at a cocktail party one evening when a messenger burst in and informed the esteemed doctor that one of his patients appeared to be dying from a heart attack.
"My good man," he replied, "that can't possibly be true. When I treat a patient for liver disease he dies of liver disease."
The two times I've been hospitalized in my adult life, I've been incredibly thankful for my parents stepping in to act as my patient advocates, including pushing back on doctors when necessary. (The first hospitalization was guilliane-barre and the other a rare hemotological condition, so i wasn't in a great place in either scenario to advocate for myself).
A pediatrician in my family has said that patients get significantly better outcomes when they have a patient advocate, because even if they are directly related to you (i.e. parents or sibling), they are going to be far better at being objective on the situation than you, the person being affected by it, is
Add on top vague symptoms that can’t actually be measured and are subjective and you end up with challenging diagnoses.
I do agree that patients should educate themselves and advocate for themselves. Doctors aren’t perfect and they don’t know everything.
But it helps to have some perspective of what doctors deal with on a day to day basis.
I had frequent headaches and the student health service referred me to a well-known and very respected hospital for tests as an outpatient. The doctor to whom I was referred was a well-known neurologist with papers to his name—probably the most eminent neurologist in the country at the time (even now, some decades after his death, his name appears on Wiki as someone of eminence).
He then sent me for a series of tests at the hospital and they extended over a number of days although not consecutive (which was inconvenient). Those tests were rather exhaustive and included amongst others neurological tests, brain x-rays, electroencephalographs and testing my eyes including injecting fluorescein into my veins to improve the contrast of the photos they took of my eyes/retina—afterwards I was pissing out that brilliant florescent yellow dye for the better part of a day.
Keep in mind that those tests involved other doctors and clinicians who would have examined the neurologists report, so decisions weren't taken in isolation.
After all that and multiple visits to the hospital he said that they could find nothing wrong with me and suggested that I be admitted for at least three days for further tests! I declined as I was about to have uni exams and never did return to be admitted.
Several months later I visited a local GP practitioner because I'd had a bad dose of the flu and after he'd dealt with that I mentioned my ordeal at the hospital.
He was palpably furious and mumbled quietly under his breath which was just audible enough for me to hear "fucking idiots". Within a split second he went on to say "presumably during all this testing no one actually suggested that you might have migraine?" to which I replied "no". That made him even more annoyed.
He then prescribed a common Parke Davis formulation called Ergodryl, which, back then, was a common go-to drug for migraine, it's a formulation of egotamine tartrate, caffeine and diphenhydramine (a well-known antihistamine).
Problem solved, that drug completely killed my headaches. I've never forgotten that incident and although I've experienced similar inept performances I've never experienced one on that scale again. Ever since I've never fully trusted a medical diagnosis unless confirmed by second options and backed up with tests. It pays to be not only cautions but also to do one's own independent investigations.
From my experience, not all doctors are mediocre to the extent that I'd wished I'd seen another, some I've visited are quite exceptional and have an innate ability to cut to the core of a problem immediately, or at least start investigations on the right footing. Unfortunately, from my experience, they seem few and far between in numbers.
I was once introduced to a state director of health (the State's top medical officer) through a common interest outside of medicine and I got to know him relatively well. Some time later I mentioned that incident and he said to me without hesitation that he would not trust 90% of his profession to make a competent diagnosis, and he went on to say that if I were ever to be stricken by some dangerous life-threatening disease that I was to give him a call and he'd provide me with a short list of the competent ones who he'd trust—one's that he would go to if he became sick. Fortunately, to date I've never had need to take up his offer.
Frankly, for the lay person this has to be a significant worry. How on earth does one know who is competent and who is not, especially if it's at short notice?
Those of us outside the US understand the US health care system is more profit orientated than many other countries but we cannot understand the huge price differentials, they're often huge in comparison with many others. Surely figures that high are nothing other than price-gouging. (Even if demand is low and the stuff has to be imported the additional costs can't be that costly. Surely not?)
So why doesn't consumer and or monopoly law kick in to stop it (as it does in many other places)?
Health-care industry lobbyists spend huge sums to convince lawmakers that they're not price-gouging and _any_ kind of price control is somehow illegal and/or will destroy the economy. This allows them to keep prices high, colluding with health insurances to make deals that incentivize buy insurance (direct-to-patient prices for many medical things are much higher than the prices that the insurance companies pay). Prices high enoguh to make it worth spending so much on lobbying.
It's completely backwards and very anti-consumer/anti-patient, but money has such an outsized influence on our politics, it's ridiculously difficult to get changes made that actually benefit the average citizen.
FYI, I'm in Australia where we have Medicare which is a universal health care scheme† supported by government taxes. It's not perfect and could always do with more money but people here love it. Tampering with it in a negative way would be electoral suicide for a government at election time.
That said, a visit to a GP is only partly paid for by the scheme (about 2/3)—that is unless the Dr 'bulk-bills' all accounts to the scheme and many don't. Bulk-billing allows a patient to walk out of a surgery without paying anything.
That long preamble lets me lead on to something you may not be aware of although many of your countrymen would be. Some years ago the government made changes to the Pharmaceutical Benefits Scheme—which is the drug store equivalent of Medicare where drugs are heavily subsidized—because many Americans who were visiting here used to stock up on prescription medicines and take them home because the price differential between here and the US is so great. Incidentally, COVID vaccinations are also free as they're covered by the scheme.
Previously, anyone could take a scrip to any pharmacy and have it filled without ID, now one has to have one's Medicard card with one or have its number on file and the Dr's script has to match that ID.
The pondering issue for us is why doesn't the US population rise up on mass for a better deal?
_
† Some years ago I heard an American (I think it was Michael Moore) say that Roosevelt had intended to set up a similar universal health scheme but he died before he could implement it. Is there any truth in that?
A particularly nasty one is endometriosis.
I am a physician in the US and have done this before (prior to medical school), so I had always thought it was (still) possible.
https://www.questhealth.com/product/lyme-disease-test-with-c...
I think you’re alluding to this in your last statement, but standard treatment for Lyme can absolutely wreck your natural gut microbiome. This could explain some of the lingering chronic effects post-treatment. Did you try supplementing with fermented foods or probiotics after completing dox?
I have noticed that the line between condition and cause is often overlooked, even by doctors. For example this leads to people thinking Pinkeye/conjunctivitis is highly contagious, when it is still conjunctivitis if it is caused by getting something in your eye. I think that holds for everything that ends in -itis too Sinusitis, Arthritis, Tendonitis, etc.
I know that is a bit of a tangent, but you reminded me of someone who had bell's palsy telling me that it was actually shingles. I explained that just because it was caused by shingles doesn't mean it stops being Bell's Palsy, just like how it is still a cough if it's from the flu or from smoking. They ended up getting really angry at me about it, but I think hn might appreciate the semantics a bit more.
It definitely helps as a patient to advocate, and add anything that a physician like myself maybe wouldn't always ask, like if you've been a tick-infested area and/or discovered a tick attached to yourself recently.
Looks like Labcorp made over 3 billion dollars last year, so I think probably that number would go up instead of collapsing?
It is true - you can’t test every patient for everything. There is an estimated 1B primary care visits in the US each year. Assume every patient get 5 tests at $50 a test and you just spent a quarter of a trillion just on tests.
The frustrating part for me is when people think of the symptom as the cause. Like they understand that multiple things can cause a fever, but they don't understand that multiple things can cause bronchitis.
When I was a kid I had "sinusitis" multiple times a year, but my doctor never explained to me that it could be the same or different causes. When I learned that '-itis' just meant inflammation, it blew my mind. I have done my best to spread that knowledge ever since.
Here’s one paper on the topic I remember reading at the time: https://pmc.ncbi.nlm.nih.gov/articles/PMC8791801/
In the end it was four weeks of doxycycline— that was several months ago and it doesn't seem to have recurred, thankfully.
Many people face symptoms months after the bite or they might not remember getting bitten by a tick so it’s common that it is misdiagnosed and they get all kinds of ineffective and / or unnecessary meds, so I added it to my “list of illnesses to check” in case I ever get unexplainable neurological issues, fatigue and joint problems.
Note that the absence of that wouldn't mean you didn't get lyme disease.
Where I live, most of the ticks carry lyme disease, yet not that many people get infected: if you pull it out quickly, you greatly reduce the chance of getting infected. Of the people I know, perhaps 20% had lyme disease (and knew about it, I must add).
Some have no lingering issues, others have lingering issues seemingly for life, and yet others have issues for a couple of years and then they're ok.
It also cured my nearly lifelong IBS-D about a decade ago. I had a small re-occurrence of IBS-D last year after so many years without it. I was able to convince the doc that it fixed it for me in the past, so he prescribed me doxycycline again. Boom! All fixed just like before.
I have no idea why that particular antibiotic does the trick, but I've taken so many others from amoxicillin line, bactrim, even cipro, flagyl (gross) etc. and only doxy is the silver bullet for me it seems.
Ouch
Then again if it irritates you, maybe it deserves a little disruption itself.
Any news on the development of the fight against Lyme Disease is great news.
One key thing I've learned is that ticks are very unlikely to spread disease-causing bacteria within the first few hours of biting. So just do regular checks whenever you've been outside in tick-prone areas and get them off right away if found. If removed promptly the chance of infection is basically zero.
But some things are just really complex and the root causes are very, very difficult to pin down. There was a lot sad about COVID, but like 4000th on the list is how it revealed the human dynamics that lead to chronic diseases being overlooked because science has no valid explanation for what's happening to patients. I say this as someone who suffered from Lyme Disease for a number of years.
Long COVID? (looks up "party" stance)... that doesn't exist. Eat Apples.
I have a friend who worked in research for rare, chronic, and misunderstood diseases for a few years. Post Treatment Lyme Disease Syndrome (PTLDS or just PTLD) is well accept by now.
The problem they encountered was that so many of the people who presented with "Chronic Lyme" diagnoses were either self-diagnosed from the internet or diagnosed by uninformed primary care doctors who used it as a catch-all for symptoms they couldn't diagnose. Many had never received positive test results, or they had received positive test results from cash-pay alternative medicine labs who used their own in-house alternate tests.
It was really depressing to hear stories about people who had been misled into spending tens or hundreds of thousands of dollars on things like year-long courses of expensive, IV antibiotics for a condition they most likely did not have. Even the idea of a persistent infection hasn't held up to scrutiny. The current line of thinking is shown in this article, where persistent particles of past infection might cause ongoing immune-related symptoms. Those symptoms would not respond to the high-dose, long-term antibiotic therapy pushed by the alternative medicine Lyme treatment providers, obviously.
So while it's a difficult topic, having some better mechanism to separate the verified Lyme cases from the self-diagnosed or those wrongly diagnosed is actually very important for improving acceptance of the condition. It's tragic that many with persistent symptoms of true Lyme infections have been dismissed, but it's also tragic that many with non-Lyme conditions have been misled into thinking that "Chronic Lyme" is the explanation for all of their problems contrary to the evidence. Getting the latter group out of the "Chronic Lyme" mindset and on to a path where their true underlying condition can be addressed, whatever it may be, is a win for them.
Had I been less skeptical, it would've been very easy to conclude that I had "chronic Lyme". Thankfully I knew better than to take the first test at face value and kept pushing for answers to find out what was behind the results-warping inflammation. But there have to be too many people out there with very real symptoms and problems who are misled into clinging to bullshit answers.
Thankfully the symptoms abated eventually, but doctors couldn't really find anything and none of the diagnostic tests turned up anything that interesting. Ultimately they thought it was probably minor viral encephalitis, but the diagnostics for this are quite bad, so no confirmation either way.
You can't really convince doctors that you're not the kind of person with a propensity for imagined symptoms (probably a lot of hypochondriacs tell them that), so there's not really anything you can say to argue when a doctor implies you're just imagining things.
That and other experiences made me realize:
A) diagnostic technology is really quite poor (e.g. at the time, only one lab (one of the UC schools, I forget which) was even theoretically capable of testing for encephalitic viruses outside of 2-3 very common ones, and all of the tests had ridiculous limitations on e.g. sensitivity window)
B) most doctors really overestimate their own intelligence, and they act accordingly
C) you and your friends/family are the only ones who (can afford to) actually care about and put serious effort into your medical outcomes. If you actually want to get good medical results, you basically just have to diagnose yourself and convince some doctor to go along with it without triggering their sense of superiority
https://scholar.google.com/scholar?oi=bibs&hl=en&cluster=384...
In two new studies led by bacteriologist Brandon L. Jutras, Northwestern scientists have identified an antibiotic that cures Lyme disease at a fraction of the dosage of the current “gold standard” treatment and discovered what may cause a treated infection to mimic chronic illness in patients. The studies were published in the journal Science Translational Medicine.
FYI, the idea that active infection continues to exist in hiding within the body is a fringe theory.
The linked article talks about one of the current theories for why some patients have persistent symptoms after the infection is treated. The theory involves certain components of the past infection lodging themselves in the liver where they persist and can cause symptoms.
This is a difficult topic because some alternative Lyme treatment providers will tell patients they have a persistent infection and then subject them to years of high-dose antibiotics with no scientific basis, which can create a separate set of problems without addressing anything.
There's a massive scam industry around Lyme and it's a shame because it interferes with legitimate suffers' ability to get honest treatment. Or worse, sends those who don't have Lyme down a rabbit hole where their actual condition is never treated.
I know someone who has been suffering from what they call "chronic lyme" for years. These people are painfully well aware of the unlikeliness of antibiotics fixing them, and they're very much aware of the problems being caused by antibiotics. But the alternative ("doing nothing") isn't helping them either, so they cling to the hope that the antibiotics will do "something".
It doesn't help that they're stigmatised. They're "lazy". They're "faking it". It isn't a "real disease". None of that helps them. Maybe the antibiotics don't help them either, but at least they have a chance of doing something.
Unfortunately nobody wants to say it to your face, but among females, you can never rule out social contagion when confronted with extremely coincidental outcomes like this.
Or, it could be a genetic condition they both have being misdiagnosed as chronic Lyme via internet research.
Later on, she came across a doctor who happened to used to live in the North East and recognized it as Lyme disease pretty much instantly. She still deals with pain on a constant on-going basis, but has been slightly lessened with more targeted medications, etc. Hopefully something like this can offer her and others like her some sustainable, long-term relief.
Everyone always told me there is no Lyme disease in NorCal. Reading your comment helped me feel vindicated.
The Deep Places: A Memoir of Illness and Discovery
That's the most important aspect of this thing. Every other aspect of this is a sideshow to the main event. And the main event very much is the de-funding of scientific research.
No longer funding this research is a huge change. And one that will eventually have far-reaching consequences for everyone.
No, sorry, the fight with the universities is quite clearly to crush criticism of Israel and all forms of identity politics. The stops in funding for research are a means to achieve this plainly declared objective.
1. The Study Was in Mice, Not Humans 2. Mice Don’t Develop Chronic Symptoms 3. No Co-Infections 4. IV-Only Formulation
Another promising and more tested treatment is that of doctor Richard I. Horowitz: https://sciprofiles.com/publication/view/834d15f5acf0268c9bc...
I have been suffering from Lyme disease for over 15 years but I just discovered it was Lyme 2 years ago. I had a negative test first but did not trust it and did a test at a specialised lab in Germany and that came back positive. From what I hear is that the normal antibodies test only works for 50%.
Suffering from Lyme is brutal, and you look fine from the outside so it's hard for others to relate too, it attacks your whole system and if it's in your brain and nerve system it can make you feel heavily depressed and anxious like you have PTSD, this makes social events feel like a warzone.
For a period of time I could bairly talk, I just could not find the words anymore. If friends or family of my get a tick bit I always suggest them to get antibotics even if you did not have a bullseye, better safe than sorry and the risk is of getting it is way greater than what the antibiotics will do to your body.
Would be nice if it translates to humans.
> The authors argue that piperacillin, which has already been FDA-approved as a safe treatment for pneumonia, could also be a candidate for preemptive interventions for those potentially exposed to Lyme (with a known deer tick bite).
https://pmc.ncbi.nlm.nih.gov/articles/PMC9125511/ https://journals.viamedica.pl/folia_cardiologica/article/vie...
Case in point: The Trump administration has cut Northwestern off from over a quarter billion dollars in funding because of "anti-semitism." Note, that the vast majority of this money is for research just like the one linked in this article.
Of course, people seem to be arguing about anti-semitism more than cutting off funding for research. But make no mistake: cutting off research funding is exactly what is happening. And that has practically nothing to do with antisemitism.
Anti-semitism is just the convenient cover, likewise pro Palestinian protesters are judged to be interfering with USA international relations (wrt Israel) by the Secretary of State under one clause of Immigration and Nationality Act that they use to justify legal immigrants to be kidnapped and deported.
Doxycycline is used as prophylaxis for a wide variety of pathogens; either the risk is tolerable with them, or the alarm is needlessly elevated.
I'll fucking take that all day long to get rid of Lyme. It sucks out loud. Every one of my joints was killing me. Even the useless little joints in my pinky toe.
Very hopeful for a meaningful means of prevention in the coming years.
[0]: https://www.pfizer.com/news/press-release/press-release-deta...
I don't hike as much in areas where Lyme is common as I used to, but I'd still take a vaccine if I could. (I didn't know the vaccine existed in 2001 or I would have)
I really wish there still was a vaccine available (for humans). I treat my pant legs and jacket sleeves with permethrin, which slowly kills the ticks - but does so usually before they would attempt to bite. One of the better camping tricks that I've applied to everyday life.
This strikes me as somehwat odd: as far as I'm aware there are worldwide issues with overuse of anitbiotics leading to various bacteria becoming resistent (and a quick serach seems to indicate this is also the case for piperacillin), but here they're saying that it would be ok for a probabaly large amount of people (as in: millions annualy?) to get antibiotics preemptively? Or is the reasoning that the does is low enough that it's fine?
I mean, it's not uncommon for me and people I know to get a bite multiple times a year. It's better when taking precautions and know what to avoid, but still, sometimes you just have to be in tick-ridden areas and it's impractical to check yourself every hour.
https://www.pfizer.com/news/press-release/press-release-deta...
The distinction matters. Chronic lyme is quackery that encourages people to pursue aggressive long-term antibiotic treatment for a non-existent persistent bacterial infection. Often these are people who have never been infected with Borrelia in the first place.
The article directly contradicts the persistent (undetectable) bacterial infection "chronic lyme" theory.
https://en.wikipedia.org/wiki/Acrodermatitis_chronica_atroph... https://www.ncbi.nlm.nih.gov/books/NBK563289/
The theory of persistent infection hasn't really held up. There were a few researchers who claimed to have some evidence, but it hasn't really been replicated. It's largely been dismissed from mainstream research.
Sadly, it's still a favored theory in many alternative medicine communities. It's also a really contentious topic. There's a long history, including Lyme researchers leaving the field after receiving death threats following publication of research that didn't agree with the alternative medicine theories.
> That was news to me so I found this from NIH in the USA. https://pmc.ncbi.nlm.nih.gov/articles/PMC8870494/ Borrelia can cross over to the CNS. Lovely.
To be clear, that article is about CNS penetration of the infection, not persistence of the infection.
They only trust the small sample of evidence that science provides, and dismisses the vastly unknown space that their science cannot comprehend
This quote seems apt here: "You know what they call alternative medicine that's been proved to work? - Medicine."
Eradicating a bacterium with wild animal reservoir populations (deer, white-footed mice, black-legged ticks, all of which are endemic species) is ... a much harder problem.
https://reviverestore.org/projects/about-the-passenger-pigeo...
https://www.defenseone.com/threats/2019/07/did-us-invent-lym...
Doctor said it was incurable, and gave me a list of meds where the side effects looked worse than the disease.
I rejected it, and started examining every piece of data known to mankind.
This led to me to variety of things. First was biological, a new tech drug that’s super expensive and I had to be on it for life. I was only 30, and no way I’m taking a drug for life at this age. What if I get laid off (or go travel) and can’t afford the 5k price tag per dose for my entire life?
I then found other treatments, ones more natural but scorned on by the medical elite professionals. I went to Eastern Europe to do oxygen therapy.
I came back home, and was well. I told the clinic that I’m healed now and don’t need to come back for the biologic anymore. The staff at the clinic were appalled — they never heard of a case of someone getting healed and weaning off their meds
The medical system is here to squeeze everything from you. You are the top of the line revenue stream. Your health and wellbeing is in direct conflict of their objective function — make more money
Never forget this
Like hyperbaric or just with a mask and a tank of o2 ?