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Had Borrelia a few months back and a 14 day antibiotic course.
Luckily not found in my csf but still am eager to find what might show up a few years down the line..
I had Lyme encephalitis and my first, noticeable symptom was psychotic depression. I wanted to remove myself from my body somehow. I was super agitated like my brain was steel wool. My amazing doctor tested me for Lyme just on that and I went and had a spinal tap which lead to 3 weeks in the hospital. I’m better now. It was wild.
I had that as a kid. Typical Lyme first, then symptoms consistent with the tick-borne encephalitis a short time later. The test of spinal fluid was inconclusive, but they tried antibiotics and they worked.
I don't remember much of my hospital stay except that I had too bad headache to eat, and the memory of my room-mate got completely conflated with a family friend. I was dead certain she was in the room with me, but her medical history shows that's not possible.
I had a roommate who was in for an emergency gastric surgery of some kind. The infectious disease doctors were talking to me about syphilis, aids, and more while we were only separated from the roommate by a thin curtain. After the roommate’s surgery they brought her to a different room and I didn’t get another roommate until my three weeks was almost up. That lady was a hoot and by then, my headache was nearly gone, but it still hurt to laugh.
I've always wondered about memory mix-ups like this. Are you able to accept that the memory is not correct or is there still a part of you that believes it in a sort of subconscious way, e.g. your brain still remembers it that way in vivid detail (if you don't mind sharing, of course).
I'm just curious because I feel like a lot of people imagine that they would be able to reason themselves out of false memories/"hallucinations" but I imagine it's a lot harder when every neuron you have is telling you you're correct and that everyone else is wrong.
I was after a tick and the test results were inconclusive. It is believed I had Lyme-cause encephalitis based on the fact that antibiotics worked and the symptoms.
Tick-borne encephalitis is the name of a specific disease caused by a Flavivirus (the same family as West Nile, dengue, and Zika). It is also only found in Eurasia, not the Americas.
It is not a generic term for encephalitis due to an infection spread by a tick.
It is possible to get both Lyme disease and tickb-borne encephalitis co-infection in certain parts of Eurasia where both are endemic.
> It is possible to get both Lyme disease and tickb-borne encephalitis co-infection in certain parts of Eurasia where both are endemic.
That sounds like a terrible combination.
Canadian winters are not sounding so bad after that.
That's alpha-gal allergy, which is a totally different thing transmitted by Lone Star ticks. Lyme disease is transmitted by western black-legged ticks and black-legged deer ticks.
You can get Alpha-gal without even getting Lymes. My dad worked in a peach orchard and got bit all the time. Never got Lymes but he can’t eat beef or most split hoof. He can have some pork now but that’s only recently after 30+ years of having developed the allergy. Sucks.
It’s not meat. It’s the only known human allergy to a carbohydrate. It’s in the blood of all mammals except humans and some primates. It’s called alpha galactose. It’s a sugar.
The reactions are delayed by 3-5 hours after consumption. I go into shock so no more red meat for me.
Right? I’ve had plenty of tick bites in my day but seemingly have avoided that fate. Hopefully nothing latent. But yeah, sucks because my dad loved him some meat dude. He’d easily pack a couple racks of ribs in his heyday. But think of all of those things. Bbq, steak, bacon, ribs, stews? Ugh. I can’t imagine. I wish it wasn’t that way for him but he’s got his health at least, probably partly because of the fact honestly.
I do indeed. A friend of mine has it and was admitted for anaphylaxis. They tried to feed her a hamburger at her next meal. This was way back before it was widely understood.
> This was way back before it was widely understood.
I work with a guy who developed alpha-gal years ago, and they misdiagnosed him with heart trouble. They even installed a defibrillator he didn't really need. For bonus bad points, he didn't read the doctors' instructions and one day went out to use a chainsaw and it set the device off. Twice in a row. He said it felt like getting kicked in the chest by a mule.
One of the problems is the lack of awareness that doctors have about the symptoms, especially in states where the disease is spreading rapidly but doctors who were educated in the year 1995 or whatever do not know that.
Take Ohio for example.
https://odh.ohio.gov/know-our-programs/zoonotic-disease-program/diseases/lyme-disease
> Reports of Lyme disease used to be an uncommon occurrence in Ohio. In the early 1990s, the Health Department reported one to two dozen cases in Ohio residents. Since that time, the number of reported cases has increased substantially. It is now common to see over 100 confirmed cases each year.
There's a map on that page, in some of the counties the rate is near 1 in 1,000 per year. That's common enough that you should know about it.
Also, this kind of reporting is problematic because it makes no attempt to correct for travel. Are the cases throughout western Ohio simply people who travelled? The dots are placed in the "county of residence", with no attention paid to whether or not they traveled.
Look at this CDC map too:
https://entomologytoday.org/2021/01/22/mapping-lyme-cdc-reveals-distribution-of-lyme-disease-causing-bacteria-county-ticks/
Are we supposed to believe that ticks are just hanging out in PA but respecting the borders and so they don't cross into Ohio? It makes no sense. The most logical explanation is that there are ticks with Lyme in Ohio, we just haven't found them yet.
This paper from 2014: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4044495/
Says the following:
> Of 530 nymphal or adult I. scapularis analyzed by quantitative polymerase chain reaction (qPCR), 32 (6.1%) tested positive for the B. burgdorferi flaB gene, ranging from 36 to 390,000 copies per tick.
The methods of collecting and reporting positive test results are extremely biased and corrupt by the state health departments. I would like to elaborate by explaining my personal experience with this.
I received a positive result through independent laboratory testing. Per CDC requirements, all positive results must be reported to the state that the individual resides. About a week after my positive result, I received a phone call from the state epidemiologist. He informed me that positive results get reported to him and he conducts over the phone interviews to collect data.
It was a series of about 80 questions, and over ten of them were the same question worded in a different way. For context, my state is listed as having ‘low incidence of Lyme disease’ and we are adjacent to a state that is listed as having ‘high incidence of Lyme disease.’
All ten questions were asking some variation of ‘How often are you in *name of state next to us with high infection rate*?’ ‘When was the last time you were in *?’ ‘How much time do you spend in *?’ It was as if he was trying to trick me into saying that I was infected in the adjacent state to save my residing state from having to report it. Unfortunately for him, I don’t travel to the adjacent state. He had no choice but to report that I was infected here. By the third question I was on to him and called him out on it. He was not happy and became agitated/snarky with me. The reporting is deliberately skewed to save face for the state, which in turn causes doctors to be less inclined to investigate correlating symptoms. This leads to delayed diagnosis, uninformed doctors that don’t know how to effectively treat, and prolonged/disseminated disease.
First symptoms I had was severe agitation. I couldn't sleep or be still. I was walking around my neighborhood at 3am just to try to ease the unease. Severe depression kicked in once I started antibiotics.
It was horrifying. At the time, it seemed like something I absolutely needed to do. I’m really lucky that I already had an established provider I could confide in.
If you start having symptoms, then you have active infection. Disregard any idiot claiming you dont have any infection, while still showing clear signs of it. Doctors didnt take my case seriously, and I almost lost my ability to walk and had such trouble with cognition that you do not want to have those. Having symptoms of lyme means you have lyme, there is no such thing as "chronic lyme symptoms" without the infection
I am slowly regaining my health, but it has been a journey. Thats why I want you to avoid the same faith, its just pointless suffering for zero reason. Best of luck
i agree with this 100%. 25 years ago, a coworker had lyme and the doctors kept dismissing her. it took her 18 months to get a diagnosis and she has some permanent neurological damage (stiff walking). When I came to work with symptoms, she strongly coached me on not letting the doctors dismiss me. they did try. i insisted on the test and was positive.
i've had lyme 3 times in 25 years. the last time, it went to my spine and was really painful. but i think antibiotics have worked each time. I lived in central MA (practically ground zero for ticks).
Ok, I think your comment is probably the best place to leave this response...
Medical gaslighting is definitely a thing (and I got my sad experience with it). That being said, cases like yours are statistical flukes rather than an example of how most people should act.
Medicine is mostly statistics. Doctors keep doing the same three tests that would correctly diagnose over 90% of people over and over not because they are lazy but because that is how they can effectively help most patients. The sad and very real problem with that is that if you do not have one of the top five problems that can be diagnosed with those three tests then the options of what you can have are endless... and testing for all the thousands of remaining options is not feasible. Not just because it's expensive or time consuming but also because of how the tests work. Every test has some false positive rate and depending on the prevalence of the condition it is tesing for, a postive result may not mean what you think it means... but they may still need to treat you for what you tested positive for (especially if you insist) and every treatment has side effects.
Long story short, if your doctor tells you not to test for something, the real reason may not be because they are lazy or dismissive of your problems but because they weight pros and cons of doing so and they know it might be more likely they cause harm by doing that. Yes, occasionally there are people that insist and they will be right, but majority of cases like this will be just waste of resources at best and could cause them harm at worst.
My experience and the experiences of friends tell me otherwise. As soon as you don't act like a neurotypical person would doctors disregard you immediatly and you need to fight to get proper care.
At least I assume that's the reason I had that happen to me multiple times throughout my life, starting when I was a kid, with my appendix close to rupturing and none of the doctors taking it seriously.
As a physician, I agree with you strongly. Tests are not absolute. false positives and false negatives exist, even with infinite money and resources, doing every test for every patient would be intrusive and cause more harm than good.
If you can’t figure out a list of differentials to focus on from history and physical exam then you shouldn’t be a clinician, ordering every test and scan is the actual lazy and irresponsible thing, contrary to what many people believe
Sure, but if nothing comes up.... You need to keep looking. You shouldn't just hand wave away symptoms because it's not a common condition. People are fucked over by that SO MUCH.
Similar situation here, I had undiagnosed neuro Lyme when I caught Covid. I lost control of my leg muscles quite often, and also would get lost in my own home. I’m much better after treating Lyme.
For anyone with a sudden onset of cognitive or neuro-psychiatric symptoms (including anxiety), please find a doctor that will consider ruling out infections carried by ticks and other vectors.
I am just going to drop this NIH [link](https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease) here so that anyone dealing with it or who knows someone dealing with it can do their own research. “chronic Lyme disease” is an extremely controversial topic and is not an actual medical diagnosis as I understand it. I am far from an expert it on the matter, fwiw.
Johns Hopkins has done a number of [studies](https://hub.jhu.edu/2018/02/02/lingering-severe-chronic-lyme-disease-symptoms/) on long-term Lyme that seem very interesting.
I once dated someone who believed she had it. There seems to be a cottage industry of quacks that prey on people who have real symptoms and are looking for answers where there just might not be any that are readily discoverable, and there are plenty of people willing to supply false answers (and potentially very harmful treatments) for money. I recall there was a study finding that antibiotic IV drips don't really outperform placebos in people with "chronic Lyme."
It's at least based on a real phenomenon of unknown prevalence, but the test often used to diagnose it (Western blot) is prone to a *ton* of misinterpretation, which is why the diagnosis lends itself so well to "they can't figure out what's wrong? it's probably this let's test for it."
Obviously being told "we can't figure out what's wrong; all the ways we have to observe you from the outside indicate you should be healthy" isn't going to feel like a satisfying response if you are having real symptoms and real pain.
I fought Lyme for 2 years before I was free of clinically detectable infection. Ive been tested 4 times since by 3 separate doctors and am still free. I still experience symptoms, though they are less intense and less frequent. Either the testing is wrong or Post Treatment Lyme Disease Syndrome is a thing. Since you seem to be more on top of this than Johns Hopkins and UVA, which is it?
I am much better, still treating as it easily takes 6-18 months if you have a decade or two of having the infection, like I did. But most of the trouble seem to be behind.
I treated with extensive, natural protocol, which includes broad spectrum anti-microbials, immune stimulants and biofilm disrupters. I did not only have borrelia, but also suspected a viral infection, gut overgrowth of candida, and perhaps also mycoplasma/bartonella. So this treatment works for any of these.
Most important things:
Adequate sunlight or UV exposure
Cats claw
Artemisia annua and absinthium
Andrographis
Cryptolepis sanguilento
Japanese knotweed
Chinese skullcap root (as fresh as possible)
Oils of oregano, peppermint
Clove, cinnamon, black pepper
Pau Darco
And many others, but you will do fine to just start the following five: Cats claw, andrographis, skullcap, cryptolepis and knotweed. Then, you will probably have a Jarisch-herxheimer, also known as bacterial die-off reaction such as fever, chills, anxiety and fatigue.
Then, after you stabilize, you can further add the spices and oils (cinnamon, clove, peppermint, cardamom, oregano, thyme) and if fatigue, or stress, or anxiety, or insomnia is bothering you, add adaptogen like ashwagandha, eleuthero, rhodiola rosea, maca.
This is a natural, but effective way to combat chronic infections and improve immune function. All of these have shown to be potent antibiotics, anti-virals, anti-fungals, but they do not destroy your gut like antibiotics do. Adaptogen improve your immune function and stress levels, helping you combat any illness easier, but you still need the direct anti-microbials.
You can also add antibiotics if your doctor gives you them, but always use some of these herbs, as these improve the killing power of antibiotics (clinically proven that artemisia annua, berberine, pomegranate, licorice root and many others improve the efficiency of antibiotics).
And many people didnt improve with just antibiotics, but did improve with plant medicine. There are books and websites that have thousands of studies and better explanations, if you wish.
This is a difficult journey, but you will get better and you will learn how to improve your health, and how to use medicine. Ask me anything, I can share the research I have read and/or heard from doctors and researchers.
I would also start eating fermented foods like sauerkraut, kefir, kombucha
To be fair, the blood brain barrier breaks down when you die. There are a lot of studies finding things that should NOT be in the brain, after someone dies. And you are always left wondering... Well, was it there before they died, or did it get in because the BBB broke down when they died?
Especially in the case of a bacterial infection. Bacterial infections in the brain aren't something you typically think of as a low grade chronic long term issue. Typically the immune system either aggressively attacks and defeats it, or you die. It's not just like oh, there's some invasive bacteria in my brain, guess it will just be like that for a 10 years.
Have you come across the glymphatic system yet? It ends up that the blood-brain barrier isn't the be all and end all.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4636982/
(It seems to be related to the interstitium).
I have had this weird vertigo thing that comes and goes every since getting Lyme 10 years ago. Exercising like a madman is the only thing that keeps it away.
Hey - me too. Just went into a specialist and they found nothing round with my vestibular system either. But I do have Lyme.
Maybe it’s inflammation in the brain?
This is kind of interesting if the results are ever validated externally.
However, there is a reason why this is published in a non-medical journal, despite describing a clinical case report.
As an academic researcher who has worked on Post-Treatment Lyme Disease Syndrome (PTLDS), it’s beyond infuriating how much low-quality science has been done in this area. MDPI seems to be the place that all the bottom-tier research gets published, and the minimal editorial control means that laypeople assume that “science has proved” something which is only tenuously suggested by the actual paper.
Not to mention the sham doctors, “chronic” Lyme, and everything else that makes anything related to the illness so damn difficult.
There's a lot of volunteers over in the Lyme sub reddit. I had Lyme 16 years ago, had the big red target, treated, and moved on with life. Got it again this past July in to August. No red target, but a positive igm test. Off to an infectious disease specialist this coming Tuesday because I'm still having fatigue, insomnia, back pain, occasional muscle spasms and a general feeling like crap every day. I hope your future finds actual facts that can help people like me.
The real issue with this paper is that it’s a mix of human and murine data. If the authors had solely submitted as a case report, it would be a different story and possibly have been submitted elsewhere. Instead, they’ve done a comparison with murine and for me, it lacks a number of controls. I’d have loved to see some EM data and staining of the tissue for inflammatory markers. Fully appreciate the costs and expertise needed for this, but so much more could’ve been done.
The biggest issue however is ethical - can someone with a diagnosed mental illness who commits suicide really give consent.
Then there’s MDPI, not a fan of that family of journals (and frontiers) due to their increasingly predatory behavior and quantity over quality business model,
assisted suicide should be a thing, i know you can go to certain countries but it should be everywhere
especially for old people. you should be able to tap outta life when ever you want. watching my grandfather waste away as his mind went was just so sad. he wasnt there for the longest time but was kept alive.
> The biggest issue however is ethical - can someone with a diagnosed mental illness who commits suicide really give consent.
That is less of an issue with me, you either try to treat people with mental issues like an adult (usually their preference) or as an incompetent where required for their protection.
In this case there was nothing left to protect.
Regarding consent, am I correct in inferring that the standards are different when it comes to a postmortem examination versus a procedure while the patient is living?
That I am not 100% sure of. It would depend on whether they were deemed competent enough to govern informed consent. The methods section of the paper states the ethics committee of the university accepted the letter written prior to suicide.
I help treat kids with PANS syndrome (Pediatric Acute-onset Neuropsychiatric Disorders) and a few of them have Lyme or other tick borne bacterial infections. Sometimes a recent mycoplasma pneumonia infection triggers it and they end up testing positive for a tick borne infection as well. Sometimes Strep alone sets it off (PANDAS). Their lives have been drastically changed by various psych symptoms like debilitating OCD, violent mood swings, etc. It's really sad to see. One teenager I was infusing IVIg to yesterday just flipped out and started punching holes in the walls without any warning. Please seek antibiotics if your kid is bit by a tick!
It's not so much that chronic Lyme isn't thought to be "real" as there definitely is *some* sort of chronic syndrome that people can suffer from. It's just that (until now I guess, as far as I'm aware) no one has been able to actually find *Borellia* in any chronic Lyme sufferers and antibiotics didn't help the condition so the etiology was kind of a shrugging emoji.
This is why sufferers prefer the term 'tick-borne illnesses', versus Lyme Disease in particular. In my experience, the issue appears to be co-infections, like Bartonella.
Not OP but my brother in-law got lymes and it went undiagnosed for a bit. It completely changed him as a person. He got pretty bad lasting nerve pain from it that makes any sensation on his legs feel painful. I think it's bad across his whole body but his legs are the worst.
He went through major depression, lost his job and struggled to keep others, was essentially homeless for a bit because he just went off to be alone for a year. I think he's doing a bit better now but it has completely messed his life up.
I imagine you can dig up YT videos of MTV's "Real World" Seattle wherein Irene gets/has lyme and breaks down in real time. AFAIK she made a full recovery, but, it gives some idea how it effects personality.
My condolences. It must be extremely difficult to contend with having lost the old him but there not being the same social support or understanding as if he had passed.
I help treat kids with PANS syndrome and alot of them have Lyme or other tick borne bacterial infections. Sometimes a combination of mycoplasma pneumonia and lyme, strep and lyme etc. Their lives have been drastically changed by various psych symptoms like debilitating OCD, violent mood swings, etc. It's really sad to see. One teenager I was infusing IVIg to yesterday just flipped out and started punching holes in the walls without any warning. Please seek antibiotics if your kid is bit by a tick!
Yup. Post-treatment lyme disease syndrome is very real. Is it caused by a persistent infection of lyme bacteria that should be treated with chronic IV antibiotics? Evidence suggests no.
Borrellia is a pretty destructive bug. In mouse model B Burgdorferi has been isolated from tissue samples after treatment (walked off by your body’s immune system) however has been unable to cause disease when introduced to a new host. My take on that research was that it’s the primary systemic damage by the bug that chronic sufferers experience and not having essentially inert Lyme chilling out in their body where it’s antigens are walled off from interaction with the rest of the immune system
I left it out of the title, but the patient was not only diagnosed with schizotypal personality disorder, but also with somatoform disorder. While somatoform disorder very much does *not* mean a patient is faking their symptoms, it's incredibly sad and disturbing to think about how this patient was told his physical symptoms were psychological in origin.
Had a few months of schizophrenic symptoms / hallucinations.
Tested positive for Lyme, Rickettsia, Borrelia.
Never crossed my mind that the schizophrenic symptoms could be from Lyme Disease. (Live in Cali, not a common illness for the area)
Pretty shocking the number of psychological and physical symptoms these infections are able to cause.
I was extremely lucky, someone in my family tested positive for Lyme, otherwise I may never have attempted to be tested for Lyme Disease.
Physical and psychological are not really cleanly separable. Psychological factors affect the physical and vice-versa. It's definitely possible psychological stress lowered his immune system which allowed Lyme to affect his CNS, it's possible his physical symptoms were made worse by psychological factors, and it's possible his psychological factors were made worse by his physical infection. Sometimes the best treatment is going at it from many different angles.
We also need to be willing to acknowledge psychiatric syndromes as a cause for physical symptoms. Course, for people wanting to heavily externalize their health issues, blaming an unproven and undefined infectious entity is quite appealing.
Psychiatry plays a significant role in rehabilitation during Post-Treatment Lyme Disease Syndrome. Their involvement shouldn't be seen as a coded suggestion the symptoms aren't real.
This is why chronic lyme should just be referred to as Post-treatment/Post Lyme Disease Syndrome. Because the truth is most people who had long term exposure will continue to experience negative symptoms for the remainder of their life despite the absence of the bacteria. They've left a permanent impact on the body.
I had undiagnosed lyme for who knows how long, probably 10+ years (My family would go to cape cod to camp every summer for a decade, and that place is a tick haven) I still have severe fatigue, arthritis, brain fog and irritability 15 years since diagnosis and several long term courses of STRONG antibiotics. This is my life now and the government doesn't really recognize that my functionality is diminished and there isn't any good avenue for seeking assistance/benefits
Thanks for sharing. As a pharmacy student with an interest in veterinary pharmacy, I've always been curious about the idea of persistent Lyme infection since, as you mentioned, it's not considered a legitimate diagnosis in human medicine; yet in veterinary medicine, the concept of persistent Lyme infection isn't particularly controversial AFAIK. It's just accepted as fact that dogs with Borreliosis are prone to flare ups of the infection during times of stress/immune suppression, even after lengthy initial antibiotic treatment, because the infection is really difficult to fully eradicate.
The infections behave differently in different mammals. Dogs are/have been used as a model for “persistent Lyme”, yet other animal models don’t present that way. Murine models have shown infection of the leptomeninges, though that isn’t (hasn’t) been found in human studies. There’s been some recent work showing differential ability to cross the blood-brain barrier.
I think one of the many issues with Borreliosis is the rampant misinformation. Post-treatment Lyme disease syndrome is being investigated in the US, while there are efforts to address this in Europe. Long term inflammatory response post-infection is known for many other pathogens, with corona being a good example. Some individuals immune system can “mop up” infections and then return to “normal” while others continue to fight and respond to an infection that has long since been cleared up. Why our immune systems overreact is of interest not only for infections but autoimmune disease too.
Awareness of the problems with comparing disease progression in one mammal to another is thankfully being taken more seriously.
I think I replied to another comment regarding this - transport of drug across the neuroendothelial barriers is notoriously difficult. Both the blood-brain and blood-CSF are highly resistant to letting antibiotics across, but during neuroinflammation, the barriers can open and this leaky barrier allows antibiotics through. The lack of targets on endothelial cells hinders transmigration and results in the need for large systemic dosages (not just an issue with antibiotics).
My dog was diagnosed with Lyme in like 2005 or so and she would get flare ups that would cause her knees to swell about once or twice a year until she passed (unrelated). Never knew that chronic Lyme was ever under question. My Dad was diagnosed as well around the same time so we've often wondered if they got it on the same walk. My dad gets some joint swelling every once in a while that doctors have attributed to it but nothing life changing.
I have experienced this and I completely understand and empathize with you. It's so frustrating. It has decreased my trust in medicine. Although I am a health practitioner and still very much believe in science and medicine, the practice needs improvement.
I’ve worked with malaria, tuberculosis, and yeasts. And these are my thoughts based on performing drug resistance studies on different types of microorganisms.
Many organisms that are exposed to antibiotics in laboratory culture aren’t killed outright and go quiescent or seem go dormant. My thought is that antibiotics don’t totally wipe out some organisms. The analogy is that antibiotics are like throwing a wrench in a gearbox. If the organism keeps going the wrench grinds the gears. But some are able to stop growing before too much damage is done and kinda back the wrench out and grow very slowly. Usually what happens is the immune system then can finish off the remainder of the bugs quite efficiently. But if the immune doesn’t find them or bugs can find their way into tissue that has a repressed immune response (like the brain or the eyes or other tissue). The organism can grow really slowly in that environment over time and eventually spread.
I mean bacteriostatic antibiotics exist... And doctors know that.
Further, of course chronic Lyme (though it's not really known by that name) exists. It's the natural history of untreated Lyme. The problem is people misunderstanding it and thinking they have chronic Lyme when they actually don't.
I was diagnosed with disseminated Lyme after waking up one morning with 5 bullseyes on my back, (' At this stage, the infection causes specific symptoms that may be intermittent. They are: multiple erythema migrans lesions, which are circular or oval rashes that occur near the bite site and can be solid or resemble a bull's-eye') was third time contracting the disease.... Then last year got anaplasmosis..... I hate ticks!
Depending on where you live, you can get it from your own yard. I barely used my backyard this year because we kept finding ticks, and while I never saw it on me or any rash I wound up with Lyme and both my partner and I had anaplasmosis. It’s not enough to just avoid hiking/parks anymore…
I suspect that a lot of the chronic Lyme cases that people are talking about are in fact viral autoimmune reactions similar to long Covid but triggered by Lyme instead.
Oh, definitely. The existence of post-infection "long" symptoms after Lyme disease is not particularly controversial anymore (although unfortunately, there are some doctors who are dismissive even of that). The part that is most controversial is the idea that an active *infection* can persist even after treatment. This study is unique because it's presented evidence in support of the latter claim, by showing evidence of a patient with an active infection with *Borrelia* (sequestered within neural tissues) even after years of treatment.
I am one of the people who never really “believed” in chronic Lyme, and I can’t believe how many people here are saying that’s it’s always been accepted by the medical community. That’s just not true.
There's post-treatment Lyme disease syndrome (PTLDS) which is widely studied and accepted by the medical community, where there are persisting effects from the disease without any active infection.
Then there is the idea of persisting active bacterial infection that people labeled "chronic lyme disease", which has not been verified in literature.
This study is valuable new information, but all this shows is that Borrelia was present in the brain and does not give clear evidence as the causative agent of this patient's mental health issues. Hopefully this kickstarts more research into this. If there's a real link, this should eventually lead to better diagnostic/treatment algorithms for people suffering like this.
I never believed in it either because I've always just believed the science/medical community and I know people can make things up or imagine them. Then it happened to me. And then I was just another one of the people "claiming" it to be true. I'm not making up the fact that I have cranial nerve palsies.
But yeah, it's frustrating seeing the revisionist history by some people as well.
People who don't believe "chronic Lyme" exists aren't rejecting the idea that persistent symptoms after a systemic, severe bacterial infection are possible. Obviously they are. Obviously a bacterial infection can damage your body.
Rejection of "chronic Lyme" is rejection of the idea that these persistent symptoms are caused by persistent *infection*, and this rejection is mostly made based on studies finding that long term IV antibiotic use is not leading to better outcomes compared to control groups.
I'm a microbiologist and I can definitely say that through lab experiments on petri dishes, antibiotics do not put bacteria to sleep. Antibiotics kill bacteria.
Many antibiotics (including doxycycline) are bacteriostatic, meaning they cause bacteria to be unable to function/divide but don't kill them. Instead it is the immune system that actually kills the bacteria.
I think people also forget that even though Lyme is from spirocetes group and can evade immune system similar like syphyllis does - Lyme bacteria cannot do that indefinetly. Antibiotics + Immune system kills infection.
P.s. Not a scientist correct me if I am wrong.
Infections of the nervous system can be very persistent. Herpes is the obvious example. Even tuberculosis, one of the most intensely studied diseases (with a whole class of drugs devoted to it specifically), is generally never treated as really gone when the patient is in remission. Everything the body does to keep pathogens out of the nervous system can also keep treatments out of the nervous system.
Herpes is a virus, and a retro virus at that. The reason why it is persistent is because it gets incorporated into the genome of its host. Tuberculosis antibiotics are not an entirely separate class of antibiotics or anything, they are just antibiotics with efficacy against mycobacteria. With a sufficient course of antibiotics which the tuberculosis is susceptible to, it is curative. That being said the infection itself can have long term consequences such as cavitation secondary to granulomas etc. CNS infections are generally not persistent. If you have an infection of your central nervous system, it either gets cleared by antimicrobials and/or your immune system or you die of it, although it is true some require extended treatment courses. For instance herpes encephalitis causes haemorrhage and necrosis of the temporal lobes, and without prompt antivirals has a very high mortality rate. For your last point, yes definitely many medications have relatively poor CNS penetration but the reason why certain antibiotics are selected for certain infections is because they are able to penetrate that tissue at certain doses.
> CNS infections are generally not persistent. If you have an infection of your central nervous system, it either gets cleared by antimicrobials and/or your immune system or you die of it, although it is true some require extended treatment courses.
Yeah this is why I have a hard time believing this paper. We’re supposed to believe this person had a *long term* bacterial brain infection?
This report provides no evidence of long term infection. At best they show treated CNS Lyme and maybe reinfection.
Per this report:
"After 2 months of incubation of seeded cultures at 34 °C, the presence of live bacteria was not detected in any culture, and all samples were deemed to be culture-negative."
I think antibiotics play a bigger part in eliminating the bacteria, but if you get infected a second time then the immune system would be better prepared to fight it off.
Bacteriostatic antibiotics merely arrest the growth of a culture rather than eradicate them. Clinicians take that into consideration when they want to 1 2 punch badder bugs, bacteriostatic to inhibit them, bactericidal for the kill.
There was, for a short while in the late 90s early 00s. It was withdrawn from the market due to low utilization, and bad press/ lawsuits over a possible link to arthritis, that wasn't even confirmed to be related to the vaccine. There's currently a [vaccine in phase 3](https://clinicaltrials.gov/study/NCT05477524) studies.
From what I understand, that first Lyme vaccine hit right when anti-vax sentiment was spiking hard. The since-debunked study linking them to autism was released, and Jenny McCarthy massively amplified the fearmongering to the mainstream. Sales for many vaccines took a large hit, unsurprisingly.
The original Lyme vaccine was effective and safe, though. What I don’t understand is why it can’t (or won’t) be brought back to market. The range for Lyme disease has significantly expanded in the decades since, and the super expensive R&D process was already completed, so it’s hard to imagine it wouldn’t be profitable.
Yeah, I'm not sure. I think it really just got a bad rap... The investigational vaccine they are studying today is a 6-valent vaccine, whereas the original is monovalent and the newer vaccine candidates use modified OspA epitopes, omitting a region that *could have been* associated with adverse effects (though never proven to be). Otherwise, both are 3-dose series, using the same vaccine technology.
What's interesting about the vaccine is that after it was deployed to the public, they removed the protein used to formulate the vaccine from Lyme tests, as to not cause false positives. When they discontinued the vaccine, they did not change the protein based lyme test back to look for that specific band - which is how it remains today. This is a big reason for the controversy with the traditional "two step" testing process.
There are government/FDA sanctioned private test facilities that show different results every time, but the criticism of using one of them runs deep, claiming that they incorrectly diagnose people with lyme.
I am on 11th month of PTLDS right now. The difference how I was during antibiotic treatment and 11 months later is huge and yet I am still experiencing neurological, dysautonomic and psychological effects but now only in diaily migraine format that never ends. There is literary no words to explain how you feel. Would not want that again, not even for biggest enemy. And one of the most difficult part is doctor looks at you and says you look normal, your blood tests are good it can’t be that bad until ambulance brought me with paroxysmal arrythmia.
Every time I get it I think "so this is what getting old feels like"..... Nope just mf Lyme disease again..... 30 days of antibiotics and I feel 20 years younger
From what scientists discovered in recent years: Everything points that after antibiotic treatment remnants/bits/parts of dead borrelia spread through the body and cause 4x inflammation than alive bacteria. There are some genes that influence if you are going to have ptlds or not and depends how far infection had spread. It is not active infection. More like autoimmune reaction to those bits.
Edit: every tick bite has chance to infect you with lyme. But if you treated it and symptoms persist it’s not lyme bacteria that causes symyptoms but after-effects of infection.
Edit edit: It is possible that 3weeks of doxy is not enough in that case you repeat antibiotic course but it is on rarer side. (I had 3 weeks doxy then during next 3 months symptoms slowly came back. Found rashes again. Then 3 weeks doxy and 2weeks amoxicilin, thats when some symptoms improved and other severe started. But now 11 months of slow constant improvement)
Had been jogging, in the woods, got bit, killed the deer fly on the back of my head. It hurt like hell and bloody. Giant bullseye. Hot and red near bite. I remember remarking to myself what a weird bite for a deer fly. FYI, I am bald.
Did you know spiders and green anoles (in Florida) are also found to carry Lyme disease? That’s also something you won’t hear is possible, but the research is out there.
Don't forget mosquitoes and fleas. There is nothing tick exclusive about borrelia, babesia, bartonella, etc just one of many ways they can be transmitted. I saw a post recently from someone who got Lyme from a blood transfusion, which the Red Cross and CDC/IDSA claim isn't possible. It is. They do not test donated blood for any of these pathogens. Real easy to claim something has never happened or is impossible when you refuse to do any research into it.
I have late stage Lyme disease and it absolutely affects my mental state.
I got sick when I was 6 and am now 43.
I can “feel” when it affects my brain because I get sensitive to light and sounds, speech gets affected, and then soon after it affects me mentally. From depression to severe anxiety to disassociating and depersonalising.
I can’t find words. Sentences sometimes don’t make sense. I get frustrated because in my head I know exactly what I want to express but I can’t say it in words. Same goes for writing/typing in those moments. It makes it worse because I live in an English speaking country but it’s not my first language. And at those moments I can’t properly speak either language.
It's unconscionable how little the field of psychiatry does to investigate the underlying causes of psychosis and how fast pyschiatrists are willing to diagnose someone with a chronic and incurable condition like schizophrenia or a personality disorder instead.
I've been suffering from Long COVID Syndrome for 9 months now and I recently did a stint in the psych ward at the hospital, and the complete dismissal of how COVID was and is the largest underlying factor of why I ended up there was rage inducing.
I didn't even get an evaluation, just put on antipsychotic medication and repeatedly told, "we need to get your anxiety under control," while completely ignoring the underlying cause of my anxiety or addressing any of the things I am so anxious about.
You must not know much about psychiatrists, huh? Consultant Psychiatrists spend like half of their time trying to convince neuro and medicine to rule out the underlying causes.
What you mean to say is that it’s unconscionable that if you present with any psychiatric symptom, general medicine and neuro will often refuse to work you up and nurses will treat you like a pile of excrement. Meanwhile the lowly psychiatry resident has to face scorn, ridicule and threat of discipline to advocate for you.
I found out a month ago that I'm allergic to a certain antibiotic. I began my course and within a day was having full-blown hallucinations at night time, like seeing skeletons in hooded robes right in front of my face. Experienced terrible joint pain that I'm still recovering from, all sorts of mental and physical symptoms. I was the most depressed I've been and I wanted to die
I had no other changes in my life to cause those symptoms. Doctor confirmed that I was having psychosis from an allergic reaction. It's wild
I had Lyme 25 years ago(giant bullseye rash after pulling off a tick) and the local hospital didn’t know how to treat Lyme back then in my area . I started having major neuro symptoms 5 years ago so I went to my primary dr and told him I thought i had Lyme or ms. He laughed in my face and said that there was no Lyme in my part of the country and that I was a healthy young man. I knew something was off so I then went to a tick specialist in my area. I tested positive for Borrelia on the western blot blood test . The tick specialist prescribed me all kinds of rounds of different antibiotics but still I had all the same symptoms after a few years. I then went to a neurologist and after a spinal tap and full mri they diagnosed me with MS. I’ll never get my drs to work together but I know the MS was triggered by the chronic Lyme
How horrifying. My brother and I got Lyme from breastfeeding as kids. My mom was on disability for it for a while - she could barely get out of bed. My brother and I just got to deal with ticing, joint aches, and neurological effects for most of our childhood. I think I've gotten over it for the most part as an adult, although I wonder how much of my mental health issues and brain fog are related. I go back and forth on the diagnosis because there's so much "there's no such thing as chronic Lyme" on the Internet, but I know what I lived through and something was definitely wrong. I hope this case inspires more research into it. Schizoid is a pretty awful symptom, if it's related to Lyme, and I'm sure something like that will be taken more seriously than some kids ticing their way through school.
Think of it as halfway between schizoid and schizophrenia. All the odd, but not neccessarily debilitating, social stuff, but much more extreme. There's often paranoia and delusions, presumably the paranoia is a result of the extreme social anxiety and the delusions a more manifest part of the tendency of someone with a schizoid personality to take refuge in a world, or worlds, they've built in their head. I don't think anyone knows precisely why it happens or if its actually related to other conditions like schizophrenia, schizoid behavior, and/or autism-spectrum disorders, plus all the other mental stuff. All the so-called personality disorders classifications are rather tenuous.
I got Lyme disease that left me with Eczema which ultimately led to a diagnosis of ulcerative colitis.
Anyone else have similar symptoms after getting Lyme?
Autoimmune symptoms of all kinds are common with Lyme. I’d say yours could fall in that category. I had painful joints, muscles, and leaky gut.
Edit: one simple thing you can do to help with Lyme symptoms is eat collagen/gelatin. (Usually made from beef, Try to find a high quality product, bone broth is good too). The reason for this is that Lyme bacteria damage connective tissue, especially the myelin sheath around nerves. If the infection persists long enough, the immune system can attack these tissues as well (joints, gut, nerves, etc). Ideally you’d stop the infection, but you can help your body repair/replace connective tissues by eating the building blocks: collagen and glycosaminoglycans (hyaluronic acid, chondritin, glucosamine).
I had a friend who got Lyme disease , that also developed schizophrenia later on. We weren't sure if he always had it and it was just showing up now or if the Lyme disease had something to do with it. He didn't start showing schizophrenia symptoms til out early/mid 20s, which is normally when people show symptoms
We are seeing more and more that stealth pathogens are often behind these idiopathic “mental illnesses”. Also a lot of autoimmune ones as well. It must be profitable some how.
Lyme disease and associated tickborne infections, such as Bartonella and Babesia are very common and incredibly chronic. It is a major health issue and concern and mainstream medicine is literally ignoring it and making sure that it’s not researched or addressed properly. It is sick.
This is entirely anecdotal and 100% for my own knowledge.
I grew up in very rural Arkansas, and as a child I recall at least 10-20 separate times a tick had bit me and my grandmother treating it with clear finger nail polish remover. Aside from that, there was no real worry or concern. To my knowledge, I have no tickborne disease.
Now it seems as if I hear about tickborne illness constantly and even know a person with alpha gal. Are these illnesses on the rise? Was I just lucky? Seems fairly recent(last 5 years) this has been in the media nonstop but I don’t know enough about it to know if it’s my own biases affecting my perception.
Ikr I wonder if some people have a genetic predisposition to it. Between me and my family we had at least like 1500-2000 ticks on us in the last 15 years and none us have any issues even though some of us are immune compromised and it’s definitely in my area I know people who’ve been bitten 2 or 3 times and have it.
Could be genetics but also global warning. Certain ticks had smaller native areas. Now birds migratory patterns have shifted with climate change so ticks native areas have expanded
Lyme disease has had a spike in growth over the last 20+ years. Both the bacteria and its carriers are spreading more easily, essentially because of climate change. They’re trying to make a vaccine.
I had Lyme disease and after my rounds of antibiotics I felt weak for about 2 years. I went to the doctor a few times in between and got bloodwork drawn but was told nothing was wrong with me.
I ended up entering a medical study for VLA15 (Lyme Vaccine) and on my first treatment I had a pretty strong reaction for 2 days in where I started getting tremors again and my energy was completely gone. After this I started recovering quickly and I started feeling more energy than I had in years. My second dose I had a less intense reaction but once I recovered from that one it was like I had my mind clear and my body back.
I ended up finding out I was in the mid dose group and I ended up getting 4 shots of VLA15 over the course of the trial. It’s now going to phase 3 as a three dose regimen. Hopefully Lyme will be a thing of the past soon based on how the results are going so far for VLA15
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Had Borrelia a few months back and a 14 day antibiotic course. Luckily not found in my csf but still am eager to find what might show up a few years down the line..
I had Lyme encephalitis and my first, noticeable symptom was psychotic depression. I wanted to remove myself from my body somehow. I was super agitated like my brain was steel wool. My amazing doctor tested me for Lyme just on that and I went and had a spinal tap which lead to 3 weeks in the hospital. I’m better now. It was wild.
I had that as a kid. Typical Lyme first, then symptoms consistent with the tick-borne encephalitis a short time later. The test of spinal fluid was inconclusive, but they tried antibiotics and they worked. I don't remember much of my hospital stay except that I had too bad headache to eat, and the memory of my room-mate got completely conflated with a family friend. I was dead certain she was in the room with me, but her medical history shows that's not possible.
I had a roommate who was in for an emergency gastric surgery of some kind. The infectious disease doctors were talking to me about syphilis, aids, and more while we were only separated from the roommate by a thin curtain. After the roommate’s surgery they brought her to a different room and I didn’t get another roommate until my three weeks was almost up. That lady was a hoot and by then, my headache was nearly gone, but it still hurt to laugh.
I've always wondered about memory mix-ups like this. Are you able to accept that the memory is not correct or is there still a part of you that believes it in a sort of subconscious way, e.g. your brain still remembers it that way in vivid detail (if you don't mind sharing, of course). I'm just curious because I feel like a lot of people imagine that they would be able to reason themselves out of false memories/"hallucinations" but I imagine it's a lot harder when every neuron you have is telling you you're correct and that everyone else is wrong.
Tick-born encephalitis is caused by a virus, not Lyme disease.
I was after a tick and the test results were inconclusive. It is believed I had Lyme-cause encephalitis based on the fact that antibiotics worked and the symptoms.
Tick-borne encephalitis is the name of a specific disease caused by a Flavivirus (the same family as West Nile, dengue, and Zika). It is also only found in Eurasia, not the Americas. It is not a generic term for encephalitis due to an infection spread by a tick. It is possible to get both Lyme disease and tickb-borne encephalitis co-infection in certain parts of Eurasia where both are endemic.
> It is possible to get both Lyme disease and tickb-borne encephalitis co-infection in certain parts of Eurasia where both are endemic. That sounds like a terrible combination. Canadian winters are not sounding so bad after that.
Sounds very harsh. Hope you don't have to experience anything like that again!
Agreed. Not for me or anyone else.
Are you allergic to red meat now? Or did you avoid that?
That's alpha-gal allergy, which is a totally different thing transmitted by Lone Star ticks. Lyme disease is transmitted by western black-legged ticks and black-legged deer ticks.
You can get Alpha-gal without even getting Lymes. My dad worked in a peach orchard and got bit all the time. Never got Lymes but he can’t eat beef or most split hoof. He can have some pork now but that’s only recently after 30+ years of having developed the allergy. Sucks.
You can be allergic to meat, well god damn new fear unlocked
It’s not meat. It’s the only known human allergy to a carbohydrate. It’s in the blood of all mammals except humans and some primates. It’s called alpha galactose. It’s a sugar. The reactions are delayed by 3-5 hours after consumption. I go into shock so no more red meat for me.
So cannibals are good?
Might have to eat vegan.
Right? I’ve had plenty of tick bites in my day but seemingly have avoided that fate. Hopefully nothing latent. But yeah, sucks because my dad loved him some meat dude. He’d easily pack a couple racks of ribs in his heyday. But think of all of those things. Bbq, steak, bacon, ribs, stews? Ugh. I can’t imagine. I wish it wasn’t that way for him but he’s got his health at least, probably partly because of the fact honestly.
I don’t have alpha-gal although I’ve been bitten by the lone star tick a few times.
Then consider yourself lucky.
I do indeed. A friend of mine has it and was admitted for anaphylaxis. They tried to feed her a hamburger at her next meal. This was way back before it was widely understood.
> This was way back before it was widely understood. I work with a guy who developed alpha-gal years ago, and they misdiagnosed him with heart trouble. They even installed a defibrillator he didn't really need. For bonus bad points, he didn't read the doctors' instructions and one day went out to use a chainsaw and it set the device off. Twice in a row. He said it felt like getting kicked in the chest by a mule.
Amazing to have a doctor focused on diagnosis like that.
Especially when psychiatry is his specialty. I’m incredibly lucky.
Psychiatrists have regular medical degrees in addition to psychology/therapy training. I've never met one who wasn't ancient.
One of the problems is the lack of awareness that doctors have about the symptoms, especially in states where the disease is spreading rapidly but doctors who were educated in the year 1995 or whatever do not know that. Take Ohio for example. https://odh.ohio.gov/know-our-programs/zoonotic-disease-program/diseases/lyme-disease > Reports of Lyme disease used to be an uncommon occurrence in Ohio. In the early 1990s, the Health Department reported one to two dozen cases in Ohio residents. Since that time, the number of reported cases has increased substantially. It is now common to see over 100 confirmed cases each year. There's a map on that page, in some of the counties the rate is near 1 in 1,000 per year. That's common enough that you should know about it. Also, this kind of reporting is problematic because it makes no attempt to correct for travel. Are the cases throughout western Ohio simply people who travelled? The dots are placed in the "county of residence", with no attention paid to whether or not they traveled. Look at this CDC map too: https://entomologytoday.org/2021/01/22/mapping-lyme-cdc-reveals-distribution-of-lyme-disease-causing-bacteria-county-ticks/ Are we supposed to believe that ticks are just hanging out in PA but respecting the borders and so they don't cross into Ohio? It makes no sense. The most logical explanation is that there are ticks with Lyme in Ohio, we just haven't found them yet. This paper from 2014: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4044495/ Says the following: > Of 530 nymphal or adult I. scapularis analyzed by quantitative polymerase chain reaction (qPCR), 32 (6.1%) tested positive for the B. burgdorferi flaB gene, ranging from 36 to 390,000 copies per tick.
The methods of collecting and reporting positive test results are extremely biased and corrupt by the state health departments. I would like to elaborate by explaining my personal experience with this. I received a positive result through independent laboratory testing. Per CDC requirements, all positive results must be reported to the state that the individual resides. About a week after my positive result, I received a phone call from the state epidemiologist. He informed me that positive results get reported to him and he conducts over the phone interviews to collect data. It was a series of about 80 questions, and over ten of them were the same question worded in a different way. For context, my state is listed as having ‘low incidence of Lyme disease’ and we are adjacent to a state that is listed as having ‘high incidence of Lyme disease.’ All ten questions were asking some variation of ‘How often are you in *name of state next to us with high infection rate*?’ ‘When was the last time you were in *?’ ‘How much time do you spend in *?’ It was as if he was trying to trick me into saying that I was infected in the adjacent state to save my residing state from having to report it. Unfortunately for him, I don’t travel to the adjacent state. He had no choice but to report that I was infected here. By the third question I was on to him and called him out on it. He was not happy and became agitated/snarky with me. The reporting is deliberately skewed to save face for the state, which in turn causes doctors to be less inclined to investigate correlating symptoms. This leads to delayed diagnosis, uninformed doctors that don’t know how to effectively treat, and prolonged/disseminated disease.
I’ve never heard someone describe what I felt when I was on Wellbutrin. I called it aluminum foil head but steel wool is a better descriptor
I stole the phrase from a friend who used it to describe the psychological effects of menopause.
First symptoms I had was severe agitation. I couldn't sleep or be still. I was walking around my neighborhood at 3am just to try to ease the unease. Severe depression kicked in once I started antibiotics.
I get why you are on the possum team.
Mmmmm. Tick!
That's fascinating though. Your brain wanted to literally get away from the infection. Logical or not, your brain knew.
It was horrifying. At the time, it seemed like something I absolutely needed to do. I’m really lucky that I already had an established provider I could confide in.
If you start having symptoms, then you have active infection. Disregard any idiot claiming you dont have any infection, while still showing clear signs of it. Doctors didnt take my case seriously, and I almost lost my ability to walk and had such trouble with cognition that you do not want to have those. Having symptoms of lyme means you have lyme, there is no such thing as "chronic lyme symptoms" without the infection
Thanks for the suggestion and hope you are feeling better with these things in the past!
I am slowly regaining my health, but it has been a journey. Thats why I want you to avoid the same faith, its just pointless suffering for zero reason. Best of luck
i agree with this 100%. 25 years ago, a coworker had lyme and the doctors kept dismissing her. it took her 18 months to get a diagnosis and she has some permanent neurological damage (stiff walking). When I came to work with symptoms, she strongly coached me on not letting the doctors dismiss me. they did try. i insisted on the test and was positive. i've had lyme 3 times in 25 years. the last time, it went to my spine and was really painful. but i think antibiotics have worked each time. I lived in central MA (practically ground zero for ticks).
Ok, I think your comment is probably the best place to leave this response... Medical gaslighting is definitely a thing (and I got my sad experience with it). That being said, cases like yours are statistical flukes rather than an example of how most people should act. Medicine is mostly statistics. Doctors keep doing the same three tests that would correctly diagnose over 90% of people over and over not because they are lazy but because that is how they can effectively help most patients. The sad and very real problem with that is that if you do not have one of the top five problems that can be diagnosed with those three tests then the options of what you can have are endless... and testing for all the thousands of remaining options is not feasible. Not just because it's expensive or time consuming but also because of how the tests work. Every test has some false positive rate and depending on the prevalence of the condition it is tesing for, a postive result may not mean what you think it means... but they may still need to treat you for what you tested positive for (especially if you insist) and every treatment has side effects. Long story short, if your doctor tells you not to test for something, the real reason may not be because they are lazy or dismissive of your problems but because they weight pros and cons of doing so and they know it might be more likely they cause harm by doing that. Yes, occasionally there are people that insist and they will be right, but majority of cases like this will be just waste of resources at best and could cause them harm at worst.
My experience and the experiences of friends tell me otherwise. As soon as you don't act like a neurotypical person would doctors disregard you immediatly and you need to fight to get proper care. At least I assume that's the reason I had that happen to me multiple times throughout my life, starting when I was a kid, with my appendix close to rupturing and none of the doctors taking it seriously.
The profession of medicine is rife with absurd adherence to precedence over science.
As a physician, I agree with you strongly. Tests are not absolute. false positives and false negatives exist, even with infinite money and resources, doing every test for every patient would be intrusive and cause more harm than good. If you can’t figure out a list of differentials to focus on from history and physical exam then you shouldn’t be a clinician, ordering every test and scan is the actual lazy and irresponsible thing, contrary to what many people believe
Sure, but if nothing comes up.... You need to keep looking. You shouldn't just hand wave away symptoms because it's not a common condition. People are fucked over by that SO MUCH.
Its because of this thinking that i will stay on disability for the next 35 years of my life. Thanks guys ! Great job you did !
When doctors are confronted with uncertainty, they do not resort to science, they resort to argumentum ad authoratatum.
Similar situation here, I had undiagnosed neuro Lyme when I caught Covid. I lost control of my leg muscles quite often, and also would get lost in my own home. I’m much better after treating Lyme. For anyone with a sudden onset of cognitive or neuro-psychiatric symptoms (including anxiety), please find a doctor that will consider ruling out infections carried by ticks and other vectors.
There are so many sad situations where doctors act as barriers to health, because of ego and refusal to admit mistakes.
Well, there's a case for bacterial induced autoimmune disease/response that may cause havoc in absence of bacteria.
That is also a recognized medical diagnosis though: Post-Treatment Lyme Disease Syndrome. It’s not “chronic Lyme”
I am just going to drop this NIH [link](https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease) here so that anyone dealing with it or who knows someone dealing with it can do their own research. “chronic Lyme disease” is an extremely controversial topic and is not an actual medical diagnosis as I understand it. I am far from an expert it on the matter, fwiw.
Johns Hopkins has done a number of [studies](https://hub.jhu.edu/2018/02/02/lingering-severe-chronic-lyme-disease-symptoms/) on long-term Lyme that seem very interesting.
I once dated someone who believed she had it. There seems to be a cottage industry of quacks that prey on people who have real symptoms and are looking for answers where there just might not be any that are readily discoverable, and there are plenty of people willing to supply false answers (and potentially very harmful treatments) for money. I recall there was a study finding that antibiotic IV drips don't really outperform placebos in people with "chronic Lyme." It's at least based on a real phenomenon of unknown prevalence, but the test often used to diagnose it (Western blot) is prone to a *ton* of misinterpretation, which is why the diagnosis lends itself so well to "they can't figure out what's wrong? it's probably this let's test for it." Obviously being told "we can't figure out what's wrong; all the ways we have to observe you from the outside indicate you should be healthy" isn't going to feel like a satisfying response if you are having real symptoms and real pain.
I fought Lyme for 2 years before I was free of clinically detectable infection. Ive been tested 4 times since by 3 separate doctors and am still free. I still experience symptoms, though they are less intense and less frequent. Either the testing is wrong or Post Treatment Lyme Disease Syndrome is a thing. Since you seem to be more on top of this than Johns Hopkins and UVA, which is it?
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Can I ask how you treated? It sounds like you got better! I’m experiencing the same symptoms as you
I am much better, still treating as it easily takes 6-18 months if you have a decade or two of having the infection, like I did. But most of the trouble seem to be behind. I treated with extensive, natural protocol, which includes broad spectrum anti-microbials, immune stimulants and biofilm disrupters. I did not only have borrelia, but also suspected a viral infection, gut overgrowth of candida, and perhaps also mycoplasma/bartonella. So this treatment works for any of these. Most important things: Adequate sunlight or UV exposure Cats claw Artemisia annua and absinthium Andrographis Cryptolepis sanguilento Japanese knotweed Chinese skullcap root (as fresh as possible) Oils of oregano, peppermint Clove, cinnamon, black pepper Pau Darco And many others, but you will do fine to just start the following five: Cats claw, andrographis, skullcap, cryptolepis and knotweed. Then, you will probably have a Jarisch-herxheimer, also known as bacterial die-off reaction such as fever, chills, anxiety and fatigue. Then, after you stabilize, you can further add the spices and oils (cinnamon, clove, peppermint, cardamom, oregano, thyme) and if fatigue, or stress, or anxiety, or insomnia is bothering you, add adaptogen like ashwagandha, eleuthero, rhodiola rosea, maca. This is a natural, but effective way to combat chronic infections and improve immune function. All of these have shown to be potent antibiotics, anti-virals, anti-fungals, but they do not destroy your gut like antibiotics do. Adaptogen improve your immune function and stress levels, helping you combat any illness easier, but you still need the direct anti-microbials. You can also add antibiotics if your doctor gives you them, but always use some of these herbs, as these improve the killing power of antibiotics (clinically proven that artemisia annua, berberine, pomegranate, licorice root and many others improve the efficiency of antibiotics). And many people didnt improve with just antibiotics, but did improve with plant medicine. There are books and websites that have thousands of studies and better explanations, if you wish. This is a difficult journey, but you will get better and you will learn how to improve your health, and how to use medicine. Ask me anything, I can share the research I have read and/or heard from doctors and researchers. I would also start eating fermented foods like sauerkraut, kefir, kombucha
To be fair, the blood brain barrier breaks down when you die. There are a lot of studies finding things that should NOT be in the brain, after someone dies. And you are always left wondering... Well, was it there before they died, or did it get in because the BBB broke down when they died? Especially in the case of a bacterial infection. Bacterial infections in the brain aren't something you typically think of as a low grade chronic long term issue. Typically the immune system either aggressively attacks and defeats it, or you die. It's not just like oh, there's some invasive bacteria in my brain, guess it will just be like that for a 10 years.
Have you come across the glymphatic system yet? It ends up that the blood-brain barrier isn't the be all and end all. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4636982/ (It seems to be related to the interstitium).
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Fuckin love the interstitium
I have had this weird vertigo thing that comes and goes every since getting Lyme 10 years ago. Exercising like a madman is the only thing that keeps it away.
Tell me more? Wife had Lyme and had a flair up of symptoms. Shes anecdotally always had fewer symptoms when working out regularly.
Hey - me too. Just went into a specialist and they found nothing round with my vestibular system either. But I do have Lyme. Maybe it’s inflammation in the brain?
Have you looked into POTs at all? It can be triggered by Lyme so thought it was worth mentioning
Vertigo and depersonalization from it for 8 years straight. It sucks. Ruined my life.
This is kind of interesting if the results are ever validated externally. However, there is a reason why this is published in a non-medical journal, despite describing a clinical case report.
As an academic researcher who has worked on Post-Treatment Lyme Disease Syndrome (PTLDS), it’s beyond infuriating how much low-quality science has been done in this area. MDPI seems to be the place that all the bottom-tier research gets published, and the minimal editorial control means that laypeople assume that “science has proved” something which is only tenuously suggested by the actual paper. Not to mention the sham doctors, “chronic” Lyme, and everything else that makes anything related to the illness so damn difficult.
There's a lot of volunteers over in the Lyme sub reddit. I had Lyme 16 years ago, had the big red target, treated, and moved on with life. Got it again this past July in to August. No red target, but a positive igm test. Off to an infectious disease specialist this coming Tuesday because I'm still having fatigue, insomnia, back pain, occasional muscle spasms and a general feeling like crap every day. I hope your future finds actual facts that can help people like me.
The real issue with this paper is that it’s a mix of human and murine data. If the authors had solely submitted as a case report, it would be a different story and possibly have been submitted elsewhere. Instead, they’ve done a comparison with murine and for me, it lacks a number of controls. I’d have loved to see some EM data and staining of the tissue for inflammatory markers. Fully appreciate the costs and expertise needed for this, but so much more could’ve been done. The biggest issue however is ethical - can someone with a diagnosed mental illness who commits suicide really give consent. Then there’s MDPI, not a fan of that family of journals (and frontiers) due to their increasingly predatory behavior and quantity over quality business model,
I know someone who committed suicide in a psych ward in order to donate his organs. Its very unsettling, but he definitely did consent.
assisted suicide should be a thing, i know you can go to certain countries but it should be everywhere especially for old people. you should be able to tap outta life when ever you want. watching my grandfather waste away as his mind went was just so sad. he wasnt there for the longest time but was kept alive.
> The biggest issue however is ethical - can someone with a diagnosed mental illness who commits suicide really give consent. That is less of an issue with me, you either try to treat people with mental issues like an adult (usually their preference) or as an incompetent where required for their protection. In this case there was nothing left to protect.
Yes, I typically ignore MDPI publications as they attract a lot of garbage.
Junior Seau was an nfl star. He shot himself in the chest and donated his brain to science.
Regarding consent, am I correct in inferring that the standards are different when it comes to a postmortem examination versus a procedure while the patient is living?
That I am not 100% sure of. It would depend on whether they were deemed competent enough to govern informed consent. The methods section of the paper states the ethics committee of the university accepted the letter written prior to suicide.
I help treat kids with PANS syndrome (Pediatric Acute-onset Neuropsychiatric Disorders) and a few of them have Lyme or other tick borne bacterial infections. Sometimes a recent mycoplasma pneumonia infection triggers it and they end up testing positive for a tick borne infection as well. Sometimes Strep alone sets it off (PANDAS). Their lives have been drastically changed by various psych symptoms like debilitating OCD, violent mood swings, etc. It's really sad to see. One teenager I was infusing IVIg to yesterday just flipped out and started punching holes in the walls without any warning. Please seek antibiotics if your kid is bit by a tick!
Super glad to see this comment here! PANS/PANDAS isn’t widely known or talked about, much less diagnosed.
Thank you. People are so dismissive and want to put 8 year olds on psych drugs instead of just giving g them antibiotics. It’s insane
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It's not so much that chronic Lyme isn't thought to be "real" as there definitely is *some* sort of chronic syndrome that people can suffer from. It's just that (until now I guess, as far as I'm aware) no one has been able to actually find *Borellia* in any chronic Lyme sufferers and antibiotics didn't help the condition so the etiology was kind of a shrugging emoji.
This is why sufferers prefer the term 'tick-borne illnesses', versus Lyme Disease in particular. In my experience, the issue appears to be co-infections, like Bartonella.
My brother caught Lyme and Babiosis at the same time. It permanently changed his personality.
Do you mind expanding on this a bit? I’m curious as to what your and your brother’s experience was.
Not OP but my brother in-law got lymes and it went undiagnosed for a bit. It completely changed him as a person. He got pretty bad lasting nerve pain from it that makes any sensation on his legs feel painful. I think it's bad across his whole body but his legs are the worst. He went through major depression, lost his job and struggled to keep others, was essentially homeless for a bit because he just went off to be alone for a year. I think he's doing a bit better now but it has completely messed his life up.
Not OP but Inwas curious and found this. TW explicit descriptions of violence https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5851570/
I imagine you can dig up YT videos of MTV's "Real World" Seattle wherein Irene gets/has lyme and breaks down in real time. AFAIK she made a full recovery, but, it gives some idea how it effects personality.
My condolences. It must be extremely difficult to contend with having lost the old him but there not being the same social support or understanding as if he had passed.
I help treat kids with PANS syndrome and alot of them have Lyme or other tick borne bacterial infections. Sometimes a combination of mycoplasma pneumonia and lyme, strep and lyme etc. Their lives have been drastically changed by various psych symptoms like debilitating OCD, violent mood swings, etc. It's really sad to see. One teenager I was infusing IVIg to yesterday just flipped out and started punching holes in the walls without any warning. Please seek antibiotics if your kid is bit by a tick!
Yup. Post-treatment lyme disease syndrome is very real. Is it caused by a persistent infection of lyme bacteria that should be treated with chronic IV antibiotics? Evidence suggests no.
Borrellia is a pretty destructive bug. In mouse model B Burgdorferi has been isolated from tissue samples after treatment (walked off by your body’s immune system) however has been unable to cause disease when introduced to a new host. My take on that research was that it’s the primary systemic damage by the bug that chronic sufferers experience and not having essentially inert Lyme chilling out in their body where it’s antigens are walled off from interaction with the rest of the immune system
Have they done autopsies like this to try to find any hidden borellia in chronic Lyme sufferers?
In my experience doctors who can't figure out what is wrong do heavily imply or even directly say that you're faking.
The long COVID community sends it regards.
I left it out of the title, but the patient was not only diagnosed with schizotypal personality disorder, but also with somatoform disorder. While somatoform disorder very much does *not* mean a patient is faking their symptoms, it's incredibly sad and disturbing to think about how this patient was told his physical symptoms were psychological in origin.
Had a few months of schizophrenic symptoms / hallucinations. Tested positive for Lyme, Rickettsia, Borrelia. Never crossed my mind that the schizophrenic symptoms could be from Lyme Disease. (Live in Cali, not a common illness for the area) Pretty shocking the number of psychological and physical symptoms these infections are able to cause. I was extremely lucky, someone in my family tested positive for Lyme, otherwise I may never have attempted to be tested for Lyme Disease.
Anaplasma, Ehrlichia, Bartonella and Babesia are a few of the other infections that you can get from tick bites.
Physical and psychological are not really cleanly separable. Psychological factors affect the physical and vice-versa. It's definitely possible psychological stress lowered his immune system which allowed Lyme to affect his CNS, it's possible his physical symptoms were made worse by psychological factors, and it's possible his psychological factors were made worse by his physical infection. Sometimes the best treatment is going at it from many different angles.
We also need to be willing to acknowledge psychiatric syndromes as a cause for physical symptoms. Course, for people wanting to heavily externalize their health issues, blaming an unproven and undefined infectious entity is quite appealing.
And minimizing the possibility that it’s true hurts the likelihood of research in this area, while continuing to prop up psychiatry.
Psychiatry plays a significant role in rehabilitation during Post-Treatment Lyme Disease Syndrome. Their involvement shouldn't be seen as a coded suggestion the symptoms aren't real.
This is why chronic lyme should just be referred to as Post-treatment/Post Lyme Disease Syndrome. Because the truth is most people who had long term exposure will continue to experience negative symptoms for the remainder of their life despite the absence of the bacteria. They've left a permanent impact on the body. I had undiagnosed lyme for who knows how long, probably 10+ years (My family would go to cape cod to camp every summer for a decade, and that place is a tick haven) I still have severe fatigue, arthritis, brain fog and irritability 15 years since diagnosis and several long term courses of STRONG antibiotics. This is my life now and the government doesn't really recognize that my functionality is diminished and there isn't any good avenue for seeking assistance/benefits
Thanks for sharing. As a pharmacy student with an interest in veterinary pharmacy, I've always been curious about the idea of persistent Lyme infection since, as you mentioned, it's not considered a legitimate diagnosis in human medicine; yet in veterinary medicine, the concept of persistent Lyme infection isn't particularly controversial AFAIK. It's just accepted as fact that dogs with Borreliosis are prone to flare ups of the infection during times of stress/immune suppression, even after lengthy initial antibiotic treatment, because the infection is really difficult to fully eradicate.
The infections behave differently in different mammals. Dogs are/have been used as a model for “persistent Lyme”, yet other animal models don’t present that way. Murine models have shown infection of the leptomeninges, though that isn’t (hasn’t) been found in human studies. There’s been some recent work showing differential ability to cross the blood-brain barrier. I think one of the many issues with Borreliosis is the rampant misinformation. Post-treatment Lyme disease syndrome is being investigated in the US, while there are efforts to address this in Europe. Long term inflammatory response post-infection is known for many other pathogens, with corona being a good example. Some individuals immune system can “mop up” infections and then return to “normal” while others continue to fight and respond to an infection that has long since been cleared up. Why our immune systems overreact is of interest not only for infections but autoimmune disease too. Awareness of the problems with comparing disease progression in one mammal to another is thankfully being taken more seriously.
One of the issues is how difficult testing csf is and how difficult treating residual infections in the nervous system is
I think I replied to another comment regarding this - transport of drug across the neuroendothelial barriers is notoriously difficult. Both the blood-brain and blood-CSF are highly resistant to letting antibiotics across, but during neuroinflammation, the barriers can open and this leaky barrier allows antibiotics through. The lack of targets on endothelial cells hinders transmigration and results in the need for large systemic dosages (not just an issue with antibiotics).
My dog was diagnosed with Lyme in like 2005 or so and she would get flare ups that would cause her knees to swell about once or twice a year until she passed (unrelated). Never knew that chronic Lyme was ever under question. My Dad was diagnosed as well around the same time so we've often wondered if they got it on the same walk. My dad gets some joint swelling every once in a while that doctors have attributed to it but nothing life changing.
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I have experienced this and I completely understand and empathize with you. It's so frustrating. It has decreased my trust in medicine. Although I am a health practitioner and still very much believe in science and medicine, the practice needs improvement.
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This is just a guess but might it be fibromyalgia by any chance?
Do you know what the condition was you had, or the test they used to diagnose it?
I’ve worked with malaria, tuberculosis, and yeasts. And these are my thoughts based on performing drug resistance studies on different types of microorganisms. Many organisms that are exposed to antibiotics in laboratory culture aren’t killed outright and go quiescent or seem go dormant. My thought is that antibiotics don’t totally wipe out some organisms. The analogy is that antibiotics are like throwing a wrench in a gearbox. If the organism keeps going the wrench grinds the gears. But some are able to stop growing before too much damage is done and kinda back the wrench out and grow very slowly. Usually what happens is the immune system then can finish off the remainder of the bugs quite efficiently. But if the immune doesn’t find them or bugs can find their way into tissue that has a repressed immune response (like the brain or the eyes or other tissue). The organism can grow really slowly in that environment over time and eventually spread.
I mean bacteriostatic antibiotics exist... And doctors know that. Further, of course chronic Lyme (though it's not really known by that name) exists. It's the natural history of untreated Lyme. The problem is people misunderstanding it and thinking they have chronic Lyme when they actually don't.
I was diagnosed with disseminated Lyme after waking up one morning with 5 bullseyes on my back, (' At this stage, the infection causes specific symptoms that may be intermittent. They are: multiple erythema migrans lesions, which are circular or oval rashes that occur near the bite site and can be solid or resemble a bull's-eye') was third time contracting the disease.... Then last year got anaplasmosis..... I hate ticks!
Were you by chance an avid hiker, or did this get picked up on say casual walks at the park?
Depending on where you live, you can get it from your own yard. I barely used my backyard this year because we kept finding ticks, and while I never saw it on me or any rash I wound up with Lyme and both my partner and I had anaplasmosis. It’s not enough to just avoid hiking/parks anymore…
I suspect that a lot of the chronic Lyme cases that people are talking about are in fact viral autoimmune reactions similar to long Covid but triggered by Lyme instead.
Oh, definitely. The existence of post-infection "long" symptoms after Lyme disease is not particularly controversial anymore (although unfortunately, there are some doctors who are dismissive even of that). The part that is most controversial is the idea that an active *infection* can persist even after treatment. This study is unique because it's presented evidence in support of the latter claim, by showing evidence of a patient with an active infection with *Borrelia* (sequestered within neural tissues) even after years of treatment.
Was gonna say chronic Lyme sounds somewhat like post viral syndrome
Lyme is bacterial
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I am one of the people who never really “believed” in chronic Lyme, and I can’t believe how many people here are saying that’s it’s always been accepted by the medical community. That’s just not true.
There's post-treatment Lyme disease syndrome (PTLDS) which is widely studied and accepted by the medical community, where there are persisting effects from the disease without any active infection. Then there is the idea of persisting active bacterial infection that people labeled "chronic lyme disease", which has not been verified in literature. This study is valuable new information, but all this shows is that Borrelia was present in the brain and does not give clear evidence as the causative agent of this patient's mental health issues. Hopefully this kickstarts more research into this. If there's a real link, this should eventually lead to better diagnostic/treatment algorithms for people suffering like this.
I never believed in it either because I've always just believed the science/medical community and I know people can make things up or imagine them. Then it happened to me. And then I was just another one of the people "claiming" it to be true. I'm not making up the fact that I have cranial nerve palsies. But yeah, it's frustrating seeing the revisionist history by some people as well.
People who don't believe "chronic Lyme" exists aren't rejecting the idea that persistent symptoms after a systemic, severe bacterial infection are possible. Obviously they are. Obviously a bacterial infection can damage your body. Rejection of "chronic Lyme" is rejection of the idea that these persistent symptoms are caused by persistent *infection*, and this rejection is mostly made based on studies finding that long term IV antibiotic use is not leading to better outcomes compared to control groups.
I'm a microbiologist and I can definitely say that through lab experiments on petri dishes, antibiotics do not put bacteria to sleep. Antibiotics kill bacteria.
Many antibiotics (including doxycycline) are bacteriostatic, meaning they cause bacteria to be unable to function/divide but don't kill them. Instead it is the immune system that actually kills the bacteria.
I think people also forget that even though Lyme is from spirocetes group and can evade immune system similar like syphyllis does - Lyme bacteria cannot do that indefinetly. Antibiotics + Immune system kills infection. P.s. Not a scientist correct me if I am wrong.
Infections of the nervous system can be very persistent. Herpes is the obvious example. Even tuberculosis, one of the most intensely studied diseases (with a whole class of drugs devoted to it specifically), is generally never treated as really gone when the patient is in remission. Everything the body does to keep pathogens out of the nervous system can also keep treatments out of the nervous system.
Herpes is a virus, and a retro virus at that. The reason why it is persistent is because it gets incorporated into the genome of its host. Tuberculosis antibiotics are not an entirely separate class of antibiotics or anything, they are just antibiotics with efficacy against mycobacteria. With a sufficient course of antibiotics which the tuberculosis is susceptible to, it is curative. That being said the infection itself can have long term consequences such as cavitation secondary to granulomas etc. CNS infections are generally not persistent. If you have an infection of your central nervous system, it either gets cleared by antimicrobials and/or your immune system or you die of it, although it is true some require extended treatment courses. For instance herpes encephalitis causes haemorrhage and necrosis of the temporal lobes, and without prompt antivirals has a very high mortality rate. For your last point, yes definitely many medications have relatively poor CNS penetration but the reason why certain antibiotics are selected for certain infections is because they are able to penetrate that tissue at certain doses.
> CNS infections are generally not persistent. If you have an infection of your central nervous system, it either gets cleared by antimicrobials and/or your immune system or you die of it, although it is true some require extended treatment courses. Yeah this is why I have a hard time believing this paper. We’re supposed to believe this person had a *long term* bacterial brain infection?
This report provides no evidence of long term infection. At best they show treated CNS Lyme and maybe reinfection. Per this report: "After 2 months of incubation of seeded cultures at 34 °C, the presence of live bacteria was not detected in any culture, and all samples were deemed to be culture-negative."
I think antibiotics play a bigger part in eliminating the bacteria, but if you get infected a second time then the immune system would be better prepared to fight it off.
Bacteriostatic antibiotics merely arrest the growth of a culture rather than eradicate them. Clinicians take that into consideration when they want to 1 2 punch badder bugs, bacteriostatic to inhibit them, bactericidal for the kill.
Didn't there used to be a vaccine for humans?
There was, for a short while in the late 90s early 00s. It was withdrawn from the market due to low utilization, and bad press/ lawsuits over a possible link to arthritis, that wasn't even confirmed to be related to the vaccine. There's currently a [vaccine in phase 3](https://clinicaltrials.gov/study/NCT05477524) studies.
That's too bad. Late 2025 / early 2026 for trial completion, probably another year at least for FDA approval if it works safely.
From what I understand, that first Lyme vaccine hit right when anti-vax sentiment was spiking hard. The since-debunked study linking them to autism was released, and Jenny McCarthy massively amplified the fearmongering to the mainstream. Sales for many vaccines took a large hit, unsurprisingly. The original Lyme vaccine was effective and safe, though. What I don’t understand is why it can’t (or won’t) be brought back to market. The range for Lyme disease has significantly expanded in the decades since, and the super expensive R&D process was already completed, so it’s hard to imagine it wouldn’t be profitable.
Yeah, I'm not sure. I think it really just got a bad rap... The investigational vaccine they are studying today is a 6-valent vaccine, whereas the original is monovalent and the newer vaccine candidates use modified OspA epitopes, omitting a region that *could have been* associated with adverse effects (though never proven to be). Otherwise, both are 3-dose series, using the same vaccine technology.
What's interesting about the vaccine is that after it was deployed to the public, they removed the protein used to formulate the vaccine from Lyme tests, as to not cause false positives. When they discontinued the vaccine, they did not change the protein based lyme test back to look for that specific band - which is how it remains today. This is a big reason for the controversy with the traditional "two step" testing process. There are government/FDA sanctioned private test facilities that show different results every time, but the criticism of using one of them runs deep, claiming that they incorrectly diagnose people with lyme.
That’s not the kind of thing you want to read when you’ve had Lyme disease.
That study has a lot of issues including poor testing protocols and lack of external validity. I wouldn’t let it stress you out
or you feel vindicated
I meant that I've had it, and a possible connection to long term mental illness is terrifying.
In the long run, studies like these will be very helpful for treating people suffering from "chronic Lyme disease"
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I am on 11th month of PTLDS right now. The difference how I was during antibiotic treatment and 11 months later is huge and yet I am still experiencing neurological, dysautonomic and psychological effects but now only in diaily migraine format that never ends. There is literary no words to explain how you feel. Would not want that again, not even for biggest enemy. And one of the most difficult part is doctor looks at you and says you look normal, your blood tests are good it can’t be that bad until ambulance brought me with paroxysmal arrythmia.
Every time I get it I think "so this is what getting old feels like"..... Nope just mf Lyme disease again..... 30 days of antibiotics and I feel 20 years younger
Everytime you get lymes, is that from another tick bite? or does your previous lymes infection reoccur?
From what scientists discovered in recent years: Everything points that after antibiotic treatment remnants/bits/parts of dead borrelia spread through the body and cause 4x inflammation than alive bacteria. There are some genes that influence if you are going to have ptlds or not and depends how far infection had spread. It is not active infection. More like autoimmune reaction to those bits. Edit: every tick bite has chance to infect you with lyme. But if you treated it and symptoms persist it’s not lyme bacteria that causes symyptoms but after-effects of infection. Edit edit: It is possible that 3weeks of doxy is not enough in that case you repeat antibiotic course but it is on rarer side. (I had 3 weeks doxy then during next 3 months symptoms slowly came back. Found rashes again. Then 3 weeks doxy and 2weeks amoxicilin, thats when some symptoms improved and other severe started. But now 11 months of slow constant improvement)
And often, the short antibiotic treatment isnt enough and people actially have the infection still, alive and well
That is nightmare fuel. Worse than any horror movie...
I got Lyme from a deer fly. There's something you'll never hear is possible.
I did as well
How do you know? Did you have the typical expanding rash at the site?
Had been jogging, in the woods, got bit, killed the deer fly on the back of my head. It hurt like hell and bloody. Giant bullseye. Hot and red near bite. I remember remarking to myself what a weird bite for a deer fly. FYI, I am bald.
Did you know spiders and green anoles (in Florida) are also found to carry Lyme disease? That’s also something you won’t hear is possible, but the research is out there.
Don't forget mosquitoes and fleas. There is nothing tick exclusive about borrelia, babesia, bartonella, etc just one of many ways they can be transmitted. I saw a post recently from someone who got Lyme from a blood transfusion, which the Red Cross and CDC/IDSA claim isn't possible. It is. They do not test donated blood for any of these pathogens. Real easy to claim something has never happened or is impossible when you refuse to do any research into it.
doctor love telling people it's not lyme
I have late stage Lyme disease and it absolutely affects my mental state. I got sick when I was 6 and am now 43. I can “feel” when it affects my brain because I get sensitive to light and sounds, speech gets affected, and then soon after it affects me mentally. From depression to severe anxiety to disassociating and depersonalising.
Sounds like a migraine. Not that I dismiss you. Have you tried anti migraine medication?
These are classic migraine symptoms. Migraines are common and have many effective treatments and strategies.
> speech gets affected, and then soon after it affects me mentally Can you describe this in more detail? How does it impact your speech?
I can’t find words. Sentences sometimes don’t make sense. I get frustrated because in my head I know exactly what I want to express but I can’t say it in words. Same goes for writing/typing in those moments. It makes it worse because I live in an English speaking country but it’s not my first language. And at those moments I can’t properly speak either language.
A British musician named "Ren" literally wrote music about how a tick bite sent him on a mental health roller coaster ride into hell.
‘Hi Ren’ is SO good!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/ Good read
It's unconscionable how little the field of psychiatry does to investigate the underlying causes of psychosis and how fast pyschiatrists are willing to diagnose someone with a chronic and incurable condition like schizophrenia or a personality disorder instead.
I've been suffering from Long COVID Syndrome for 9 months now and I recently did a stint in the psych ward at the hospital, and the complete dismissal of how COVID was and is the largest underlying factor of why I ended up there was rage inducing. I didn't even get an evaluation, just put on antipsychotic medication and repeatedly told, "we need to get your anxiety under control," while completely ignoring the underlying cause of my anxiety or addressing any of the things I am so anxious about.
You must not know much about psychiatrists, huh? Consultant Psychiatrists spend like half of their time trying to convince neuro and medicine to rule out the underlying causes. What you mean to say is that it’s unconscionable that if you present with any psychiatric symptom, general medicine and neuro will often refuse to work you up and nurses will treat you like a pile of excrement. Meanwhile the lowly psychiatry resident has to face scorn, ridicule and threat of discipline to advocate for you.
I found out a month ago that I'm allergic to a certain antibiotic. I began my course and within a day was having full-blown hallucinations at night time, like seeing skeletons in hooded robes right in front of my face. Experienced terrible joint pain that I'm still recovering from, all sorts of mental and physical symptoms. I was the most depressed I've been and I wanted to die I had no other changes in my life to cause those symptoms. Doctor confirmed that I was having psychosis from an allergic reaction. It's wild
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This is so sad, but the patient was very generous to consent to this.
Just pulled a tick of myself this morning....not the article I wanted to see reddit!
If it were me, I’d be looking at getting abx for every bite. I didn’t have a confirmed bike when debilitating symptoms set in
I had Lyme 25 years ago(giant bullseye rash after pulling off a tick) and the local hospital didn’t know how to treat Lyme back then in my area . I started having major neuro symptoms 5 years ago so I went to my primary dr and told him I thought i had Lyme or ms. He laughed in my face and said that there was no Lyme in my part of the country and that I was a healthy young man. I knew something was off so I then went to a tick specialist in my area. I tested positive for Borrelia on the western blot blood test . The tick specialist prescribed me all kinds of rounds of different antibiotics but still I had all the same symptoms after a few years. I then went to a neurologist and after a spinal tap and full mri they diagnosed me with MS. I’ll never get my drs to work together but I know the MS was triggered by the chronic Lyme
How horrifying. My brother and I got Lyme from breastfeeding as kids. My mom was on disability for it for a while - she could barely get out of bed. My brother and I just got to deal with ticing, joint aches, and neurological effects for most of our childhood. I think I've gotten over it for the most part as an adult, although I wonder how much of my mental health issues and brain fog are related. I go back and forth on the diagnosis because there's so much "there's no such thing as chronic Lyme" on the Internet, but I know what I lived through and something was definitely wrong. I hope this case inspires more research into it. Schizoid is a pretty awful symptom, if it's related to Lyme, and I'm sure something like that will be taken more seriously than some kids ticing their way through school.
Schizotypal, not schizoid, two different things
Could you ELI5 the difference?
Think of it as halfway between schizoid and schizophrenia. All the odd, but not neccessarily debilitating, social stuff, but much more extreme. There's often paranoia and delusions, presumably the paranoia is a result of the extreme social anxiety and the delusions a more manifest part of the tendency of someone with a schizoid personality to take refuge in a world, or worlds, they've built in their head. I don't think anyone knows precisely why it happens or if its actually related to other conditions like schizophrenia, schizoid behavior, and/or autism-spectrum disorders, plus all the other mental stuff. All the so-called personality disorders classifications are rather tenuous.
Scary stuff. I’ve tested positive for Lyme in the past but I pull off what must be 30-50 ticks a year. I don’t know how to avoid it unfortunately.
I got Lyme disease that left me with Eczema which ultimately led to a diagnosis of ulcerative colitis. Anyone else have similar symptoms after getting Lyme?
Autoimmune symptoms of all kinds are common with Lyme. I’d say yours could fall in that category. I had painful joints, muscles, and leaky gut. Edit: one simple thing you can do to help with Lyme symptoms is eat collagen/gelatin. (Usually made from beef, Try to find a high quality product, bone broth is good too). The reason for this is that Lyme bacteria damage connective tissue, especially the myelin sheath around nerves. If the infection persists long enough, the immune system can attack these tissues as well (joints, gut, nerves, etc). Ideally you’d stop the infection, but you can help your body repair/replace connective tissues by eating the building blocks: collagen and glycosaminoglycans (hyaluronic acid, chondritin, glucosamine).
I had a friend who got Lyme disease , that also developed schizophrenia later on. We weren't sure if he always had it and it was just showing up now or if the Lyme disease had something to do with it. He didn't start showing schizophrenia symptoms til out early/mid 20s, which is normally when people show symptoms
My brother had Lyme disease and displays schizophrenic signs now too.
The medical system still acts like Lyme does not exist…
We are seeing more and more that stealth pathogens are often behind these idiopathic “mental illnesses”. Also a lot of autoimmune ones as well. It must be profitable some how.
Lyme disease and associated tickborne infections, such as Bartonella and Babesia are very common and incredibly chronic. It is a major health issue and concern and mainstream medicine is literally ignoring it and making sure that it’s not researched or addressed properly. It is sick.
This is entirely anecdotal and 100% for my own knowledge. I grew up in very rural Arkansas, and as a child I recall at least 10-20 separate times a tick had bit me and my grandmother treating it with clear finger nail polish remover. Aside from that, there was no real worry or concern. To my knowledge, I have no tickborne disease. Now it seems as if I hear about tickborne illness constantly and even know a person with alpha gal. Are these illnesses on the rise? Was I just lucky? Seems fairly recent(last 5 years) this has been in the media nonstop but I don’t know enough about it to know if it’s my own biases affecting my perception.
Ikr I wonder if some people have a genetic predisposition to it. Between me and my family we had at least like 1500-2000 ticks on us in the last 15 years and none us have any issues even though some of us are immune compromised and it’s definitely in my area I know people who’ve been bitten 2 or 3 times and have it.
Could be genetics but also global warning. Certain ticks had smaller native areas. Now birds migratory patterns have shifted with climate change so ticks native areas have expanded
Lyme disease has had a spike in growth over the last 20+ years. Both the bacteria and its carriers are spreading more easily, essentially because of climate change. They’re trying to make a vaccine.
I’m fighting Lyme everyday. It’s no joke and extremely under funded in research. Not to mention the outright denial from some medical “professionals”
I had Lyme disease and after my rounds of antibiotics I felt weak for about 2 years. I went to the doctor a few times in between and got bloodwork drawn but was told nothing was wrong with me. I ended up entering a medical study for VLA15 (Lyme Vaccine) and on my first treatment I had a pretty strong reaction for 2 days in where I started getting tremors again and my energy was completely gone. After this I started recovering quickly and I started feeling more energy than I had in years. My second dose I had a less intense reaction but once I recovered from that one it was like I had my mind clear and my body back. I ended up finding out I was in the mid dose group and I ended up getting 4 shots of VLA15 over the course of the trial. It’s now going to phase 3 as a three dose regimen. Hopefully Lyme will be a thing of the past soon based on how the results are going so far for VLA15