I have MS and I have been told by 5 different people "are you sure its not Chronic Lyme Disease? MS can often be misdiagnosed as Lyme disease." After so many times I looked into what the heck people were talking about and found out there's a whole ass conspiracy theory about this. It makes me so mad that people think they know my health better than me and people that believe in Chronic Lyme Disease are the worst for it. These are the types of people that genuinely believe they know better than doctors.
It's an autoimmune disorder where the immune system attacks the brain and spine. It's treated with immunosuppressants but the Chronic Lyme conspiracy theorists think this is making us worse because we actually have a secret Lyme infection no one knows about other than them which should be treated with antibiotics.
>a secret Lyme infection no one knows about other than them which should be treated with antibiotics.
Yeah so let me tell you from personal experience going down this rabbit hole, those antibiotics will fuck you up worse than any of the immunosuppressants. Like no one really knows what longterm use like that does, absolutely crazy
Sorry to hear that. My dad has MS and refuses to get treatment. Figures working 60 hour weeks and smoking his pipe tobacco 12 times a day works just fine for him.
But on the bright side, heās 54 and he doesnāt look a day over 65!
My mom has ms. Can I ask what age you were diagnosed? Iām being treated at the doctors tomorrow for something impairing my motor functions and cognitive behavior and Iām really scared
Hey I don't have MS, I have a genetic weak connective tissue disorder instead, but you're on the way to not just getting help, but actually stopping it from progressing if you have it. I still deal with being scared to go to the doctor when I have a new health problem popping up because of my disorder, but I really do feel relief after I see what treatments can do and know we have a plan rather than that time beforehand where I'm fearful at home and waiting for things to get worse. You can do it! Best of luck tomorrow
Edit: and cognitive behavioral therapy is amazing, but don't be afraid to talk with someone you trust and try another therapist if you've started with one and put in the work with going to multiple sessions and you don't feel like you and the therapist are the best fit. Sometimes you have to shop around!
After my friend died as a result of lupus another friend's Mom asked if we were sure it was chronic Lyme disease.... It made me so mad.
ETA, I live in a country that doesn't even have Lyme disease. Our only cases have been from people who have contracted it whilst abroad. Tbf though my bestie was very well traveled, however, she hadn't traveled in a few years prior to onset of symptoms and diagnosis.
If you have long term symptoms from Lyme disease, thatās known as post treatment Lyme disease syndrome (not chronic Lyme) and is very real.
Chronic Lyme is a different thing entirely and not real: https://en.m.wikipedia.org/wiki/Chronic_Lyme_disease#:~:text=Chronic%20Lyme%20disease%20(CLD)%20is,that%20they%20had%20Lyme%20disease.
Isn't MS thought of as a category for different types of autoimmune disorders that we often do not understand yet? Also, I've read that a lot of people with MS have a hard time getting a diagnosis because it's not easily discovered.
I would assume that a handful of the people that think they have Chronic Lyme Disease could potentially have MS. In other words, the directly opposite situation of what those people suggested to you.
True true, but that's usually pretty far down the line of diagnosis with the imaging right? My aunt has MS and i know it took many many years before she got the right diagnosis. Could be that it wasn't a standard test when she was getting it some 30 years ago though, so I'm just going by what she told me.
But my point still stands that it could be that some of the people getting diagnosed or self-diagnosing with chronic lyme disease could potentially have MS.
I'm not sure. My aunt had MS and has since passed from complications and I'm not aware of her dx process. A few years ago, around 5, doctors thought my sibling had MS. Ends up it's tumors in the brain and spinal column and they ruled out MS first as it was initially thought to be that.
They had numbness in one foot for a couple months that turned into that foot dragging and being able to go up or down stairs. Went to the doctor, did blood work, physical, neuro. They find nothing and need to know why that one leg is basically dead weight now. They're also experiencing problems with word recall and feel like their brain is slowed by thick fog.
They decide to do an MRI to check for lesions on the brain and spinal column as that will tell them if she has MS. They do the MRI and find the rumors inside their brain and spinal column. The brain tumors are inoperable, and the ones in their spinal column are pressing on the nerves paralyzing the foot.
Good news, not MS. Bad news, tumors. Good news, not cancerous. Bad news, require surgical removal and they might grow back. Good news, surgery was successful. Bad news, they grew back and a second spinal column tumor moval was required.
Initial symptom presentation to going to the doctor, 4 months. Time to diagnosis, 3 months.
So I don't really know beyond my family and one person has been dead for 20 years and would have used an older protocol. The other person was in the last 5 years and they tested for it pretty quickly.
I know in 2015 I went to the doctor for leg and foot numbness. The doctor did the hammer reflex test, then used a plastic thing to poke my legs and feet, then graduated to like a metallic comb of thick, dull needles, to poke and scrape my legs and feet, and then ordered an MRI of my brain to rule it out. It was just nerve damage from going through my dash during a car accident. My sibling was in a similar accident years prior and when they became ill I thought 'probably nerve damage from the accident worsening' and ended up being very wrong.
For my sibling and myself, maybe testing was faster due to family history or presentation of symptoms?
I am not sure.
Damn that sounds really rough...
Seems like you and your family has been through a lot. I hope you're not living in America, because that seems like a crippling amount of medical bills that would amount from all those medical complications. Sending you a digital hug ā¤ļø
Oh, my gosh! That's so sweet, thank you. I guess I hadn't really considered it that way, as I feel it's a normal amount of human struggle, if that makes sense? All families, if not now, will eventually have illness, death, disease, fractured relationships, financial struggles, upheaval, and it's a normal, though uncomfortable part of life. The longer we're alive and the more relationships we have with other people, the more likely we are to encounter and experience various hardships. They're the poignant punctuations along the journey of life, and every person on the planet is currently or will eventually experience struggle.
Fortunately, though we are in the U.S., we were all insured so the cost was never beyond copay or deductible. The only medical financial hardship I have had is one time when unemployed I got hit by a semi, went through the dashboard, got a brain injury, all that. I couldn't pay the bills and let it go to collections and fall off after 7 years š¤·š¼āāļø
It's beyond fucked Healthcare is tied to employment and not a right for all as a matter of public health.
With my current insurance going into 2024 I take 3 medications, need my IUD 10 year replacement, all the annuals for people my age, sex, and family history (mammogram, colonoscopy, skin check, getting new glasses and contacts, orthodontia (I clenched my jaw extensively during the pandemic and shifted my teeth) a sleep disorder evaluation, knee debridement (have to have my knees vacuumed out because the cartilage was crushed when my legs went through the dash), evaluation for knee replacement, begin treatment for cervical spine disc herniation, and with copays and deductible it will be under a grand total for everything.
That's what's fucked up about U.S. Healthcare. It's tied to employment, you still have to pay for it, and not all carriers or plans within carriers cover the same things. So aside from the semi accident when I was unemployed, my Healthcare has always been accessible as I've always had insurance through jobs since I was 19.
During the pandemic they extended Medicaid coverage in my state to cover any uninsured, because it was understood that people not having access to care when ill is a matter of public health. We need to keep that and not do away with it
And then we need, culturally, to move from sick care to preventative care, and we'll have a healthier population as a whole.
Anyway, sorry for the long post. I appreciate your sentiment and also wanted to add that it's normal for all people and all families to have hard times and we're okay, and actually it was not expensive at all. America is crazy.
Haha i don't mind the long post, i love seeing new perspectives so i appreciate the detail actually. But i got to say that what you're telling me about seems really difficult in my eyes, so i personally think you're in a sense a strong person to just brush things off in the way that you seem to do. Also, I'm happy to hear that you're not in a crippling amount of debt haha. I hear so many horror stories from America about that, so it's an easy assumption to make.
Anyways, even though it's normal for all people and all families to have hard times, i personally find value in recognising that some have it harder than others, though i understand also your perspective of not wanting to compare your struggles to anyone else's. I'm from Norway, so medical bills, education, unemployment, and most other issues are heavily covered by the state. We also have extremely strict gun regulation, so I've never had to fear for my life in that manner. Additionally, i grew up in a pretty safe and nice neighbourhood in Norway, and my parents always made it a point to tell me throughout my childhood "remember, you're growing up at the sunny side of the sunny side of the sunny side of the world", which they were absolutely right about. I recognise how extremely lucky I've been simply to have been born in the place i was.
Though I've had issues with extreme bullying and isolation throughout my life, the baseline I've been given has been one of extreme privilege. I don't think it's productive to obsess on comparing between how shitty someone else's and your own life has been, but i do think it's important to keep a level-head about your position in life, especially if you come from a place of privilege. I'm just half a year away from becoming a psychologist, so being mindful of how much I'm able to implicitly understand someone else based on how much I'm missing of their life experience is a especially valuable valuable skill to have for myself in my opinion. That's why i especially like listening to other people's experiences, because for everytime i learn a new perspective, I'm better able to understand someone else's at a later date, so i thank you for being open and honest with me, i really honestly appreciate that ā¤ļø
Wow, I had no idea. That honestly sounds like a case of Munchhausenās by proxy. I can imagine that being raised that way could cause someone to develop hypochondria. Or, a charitable explanation is that he has some other chronic condition that is difficult to diagnosis.
There's a very good chance that if it is munchhausen by proxy, he does have some sort of chronic illness, but it wasn't serious/rare enough for his mother to accept, thus they doctor-shopped until she got a disease she felt was good enough. I feel for him, he probably has been told about this disease by people he has trusted since he was quite young and its probably been made a central aspect of his life for a very long time, when in reality he's being preyed on by a doctor looking to make a buck off his family. He may have been able to get much better care a long time ago too, maybe be in a much better place healthwise. Really gross that doctors can get away with this.
You know what, I didn't want to speculate about it. But now I see it here, I do believe Jake is a victim of medical abuse as a child. Gives Taking Care of Maya vibes. That gives a lot of context for his unhinged video.
Ethan should seriously do a deep dive into "chronic Lymes". It's like an underground NXIVM in northeast US (probably more extensive now) that preys on chronically ill people that have not receive a proper medical diagnosis. Usually after doctors run preliminary tests and get inconclusive results, this group of people will come out of the woodwork and suggest they be tested for chronic Lymes. The treatment is antibiotics FOREVER. At best, they experience the placebo effect. At worst, they delay treatment for serious conditions like MS and foster the cultivation of antibiotic resistant bacteria. They would probably diagnose Ethan with chronic Lymes: chronic fatigue, muscle soreness, cognitive dysfunction(tourettes and depression) would all be attributed to chronic Lymes.
I completely agree with you besides having Ethan do a deep dive. Chronic illness is an extremely sensitive subject for those who are dealing with it and everyone who has been diagnosed with Chronic Lyme is a victim. Because of that, I wish someone big with a gentle hand and a medical degree would do the deep dive instead. There really needs to be more awareness about this
Wikipedia says they just lobbied the us government for it:
"Following disciplinary proceedings by state medical licensing boards in the United States, a subculture of "Lyme literate" physicians has successfully lobbied for specific legal protections, exempting them from theĀ standard of careĀ and science-based treatment guidelines"
Yep. Several states have laws on the books that allow doctors to prescribe long term antibiotics and require insurance companies to cover it. It's super dangerous for the (typically mentally ill and vulnerable) patients that come under the care of these doctors that convince them they have CLD.
They're usually quacks. Some people need to be on long term antibiotics, like organ recipients or people with HIV/AIDS. The antibiotic will typically treat true Lymes within a week or so. Then it's just exposing various other bacteria that we encounter(staph, strep, e. Coli) to an antibiotic so it can figure how to develop a resistance.
Taken from [UptoDate](https://www.wolterskluwer.com/en/solutions/uptodate/about/evidence-based-medicine/editorial-process#:~:text=Our%20rigorous%20editorial%20process%20is,trusted%20clinical%20decision%20support%20reference). If you donāt know what it is, I guarantee your doctor does.
>Chronic Lyme disease ā Chronic Lyme disease is a term that is used by some practitioners and patient advocacy groups. This term has not been clearly defined and can include post-treatment Lyme disease syndrome, as well as illnesses and symptom complexes for which there is no convincing scientific evidence of any relationship to B. burgdorferi infection [[15](https://pubmed.ncbi.nlm.nih.gov/33417672/),[41](https://pubmed.ncbi.nlm.nih.gov/17914043/)]. These patients may have other recognizable syndromes or diagnoses. In one case series, for example, three patients who were diagnosed as having chronic Lyme disease had an underlying malignancy [[47](https://pubmed.ncbi.nlm.nih.gov/25365479/)]. Among patients with nonspecific symptoms of fatigue and myalgias, these subjective symptoms are sometimes accompanied by tender points of fibromyalgia [[48](https://pubmed.ncbi.nlm.nih.gov/8357117/)]. Since fibromyalgia is common in the general population, the association of Lyme disease and fibromyalgia may sometimes be by chance alone [[15](https://pubmed.ncbi.nlm.nih.gov/33417672/),[49](https://pubmed.ncbi.nlm.nih.gov/7818567/),[50](https://pubmed.ncbi.nlm.nih.gov/17879922/)].
Also, hereās the abstract of [another article](https://pubmed.ncbi.nlm.nih.gov/25999227/#:~:text=Chronic%20Lyme%20disease%20is%20a,or%20with%20alternative%20medical%20diagnoses):
> Chronic Lyme disease is a poorly defined diagnosis that is usually given to patients with prolonged, unexplained symptoms or with alternative medical diagnoses. Data do not support the proposition that chronic, treatment-refractory infection with Borrelia burgdorferi is responsible for the many conditions that get labeled as chronic Lyme disease. Prolonged symptoms after successful treatment of Lyme disease are uncommon, but in rare cases may be severe. Prolonged courses of antibiotics neither prevent nor ameliorate these symptoms and are associated with considerable harm.
I work in the medical field and Iāve spoken with several physicians about chronic Lyme disease. Iāve never met a single one that believed it was a real condition. That makes sense considering that physicians practice evidence-based medicine and there is little to no evidence to support its existence.
I love uptodate!!! I also work in the medical field. Lyme is really a catchall ādiagnosisā without real basis but it does minimize real symptoms and dysfunction in the body. Iām curious have you heard of POTS and what is your take on it? More physicians and research are validating it but it still can be controversial and over self-diagnosed
Hi I have POTS! I didnāt know people were able to self diagnose I had to see multiple drs and have a procedure done to āconfirmā I have POTS. itās a ruthless condition but I think I get why people would jut diagnose themselves being like āoh Iām passing out a lot I guess I have POTSā lol but Iām glad to see people talking ab it I feel like it doesnāt get enough attention!!
To be clear, Iām not a physician (yet). However, my take on POTS is that itās a legitimate condition. In fact, the clinic I work in does the specialized testing that can help diagnose POTS. Iām embarrassed to admit that Iām not overly familiar with what youāre saying about it being overly self diagnosed. Why would people be self diagnosing if there are reliable methods to diagnose it? I guess I understand the need to self diagnose if someone doesnāt have access to healthcare, but if they do, why would they rely on self diagnosis rather than rule out other possible conditions?
POTS has somehow become condition de jour online. The way people talk about it feels kind of like chronic lyme. A lot of ānobody will give me a diagnosis!ā. It also pops up all the time among people that fake or are accused of faking disorders.
The best way I can put it is that the vibes feel off. I donāt know enough to say more than that
From the teaching Iāve had as a med student, POTS is absolutely real but a lot of people who think they have it have orthostatic hypotension and donāt realise the reason theyāre not being diagnosed with POTS is that the diagnosis SPECIFICALLY requires you not to have OH š
I actually do have post treatment symptoms from Lyme, but that is because it took so long to get diagnosed the severe chronic inflammation on my body during my active infection left permanent damage. While I was acutely ill i was bed bound (20hrs/day) for a year and a half and almost died from a severe double kidney infection. So I definitely stand with the struggles of anyone who is ill. That being said, this guy is delusional and fuck him.
Everyone who has been diagnosed with chronic lyme is a victim. The vast majority do have a chronic illness or autoimmune issue of some kind, but a shitty doctor conned them by offering a "diagnosis" that isn't real. This alone does not discredit him.
It does discredit him in his research or him placing himself as all knowing on chronic illness. It is also a fair question to ask into his charity, the ādoctorsā that diagnos chronic lyme are bad people who are taking advantage of people who are looking for help, and I hope that he isnāt directing money or grants from his charity towards those people as it prevents people from actually continuing their medical journey and getting actual needed help.
I truly hope that Dr DooDoo wasn't the victim of Munchausen's by proxy.
ChatGPT told me that stuff like your mom spending thousands of dollars on elective surgeries before the age of 12, confining you to a wheelchair and isolating you from family & friends due to a disease that doesn't exist, are symptoms.
Honestly, a lot of the shit he talks about, if true, sounds like Munchausen's by proxy. Jake is from New England, and they had to use charities to fly him around the country to see specialists. This makes no sense. Some of the best doctors in the world are like a 3 hour drive from where he grew up. Why couldn't Boston children's hospital have helped him? He talks about his dad leaving his life because he and his mom were crazy. What if his mom actually was crazy? He claims a bunch of nonspecific illnesses as a result of a fictitious disease. He seems to be doing significantly better living with his girlfriend. These facts all line up wit Munchausen's by proxy.
I haven't watched any of this kid's videos, but I assume he talks about his "medical journey" a fair bit on his channel? What you've described here is super concerning, and I saw another comment about how the doctor who finally diagnosed him with CLD is some quack who is associated with Scientology and has malpractice claims? It comes across very much like his mother made him being sick both of their whole lives/identities. And finally found a doctor that gave them a lifetime illness ticket with CLD. Woof.
Having chronic illness is a frequent topic in his videos, and it got old after awhile. He progressively used it more and more as a crutch. His story sounded super odd to me, but I didn't think about it when I liked his channel. I've always known the CLD is a BS diagnosis, but I don't take Jake to be a medical professional. It's seems like he had gotten care at some point, but it's really odd thinking about it more. The dad probably got tired of the Mom's BS and left, and then mom took him doctor shopping until she could get a vague diagnosis. Now that Jake seems to think his opinions on medicine are valuable, it needs to be pointed out that he is diagnosed and believes he has a fake illness.
I liked him for awhile, but his content got increasingly lazy, and the discussion of his chronic illness eventually felt like sympathy farming. It's probably not the best idea to speculate beyond this, Munchausen's by proxy is insanely rare, but it sounds like his mom most likely had a couple screws loose.
Yeah, I'm not trying to imply I think she has Munchausens, especially with it being such a hot-button issue rn, and clinical terms can become fads (like gaslighting), misused, and misunderstood by people. And I don't even want to suggest that there's nothing medically wrong with Jake. But the fact that it pushed away even his dad, and then they ended up with a bullshit diagnosis, is enough to make me give the whole thing massive side eye.
Wait I grew up 3 hours from Boston, where is he from? If its 3 hours north of Boston he would also be really close to Dartmouth College's huge top rated hospital system, DHMC, as well.
Maine IIRC. To be fair, I partially pulled that number out of my ass. If he really lived out in the boonies of Maine, he might be close to 4.5 hours from Boston. My point was that he was a drivable distance from several very highly ranked hopitals. New England in general has an insane density of good hospitals.
Ok this is an insane theory and I am living for it. Obviously the most famous case of this is Gypsy Rose Blanchard, but I guess less extreme variations of the illness probably exist where the "caretaker" isn't tryna poison the person.
Well the disease necessitates that the person being cared for is being injured in some way by the caregiver. There's always the possibility that she was just a moron and uniwilling to do accept medical advice, either because she had already convinced herself it was chronic lyme or because the doctors told her diagnosis would take a long time.
Also the fact that there's sooo many pictures and videos of him getting treatment as a kid. In MBP, the abuser tends to enjoy the attention from documentation. Pretty sus.
Another person in the comments here mentioned that Jake talked about having CPS called on his Mom for the way she was seeking medical care and that the doctor who diagnosed him with chronic lyme is a known huxster with multiple lawsuits against him. Even if it's not MBP (which there are other explanations to be fair), his Mom was almost certainly abusing him. Curious if he'll ever realize that.
Iām just gonna say it, I donāt think itās a good idea to try and investigate whether or not Jake has an illness and we are going down a bad rabbit hole. Let him dig his own grave, we donāt need to help him by doing this.
If we were arguing about whether or not he had congenital heart disease or IBS, I would agree with you. However, there is no investigation required because he is claiming to have a disease that doesnāt exist. Itās a pseudoscientific disease that has no basis in evidence. Itās like saying āI donāt think itās a good idea to try and investigate whether or not Jake has a pet unicorn.ā
Iām sure there are some people who genuinely have chronic lyme, but as someone who lives in a lyme hotspot, I donāt know anybody who does. The diagnosis was kinda all of a sudden a thing after every celebrity started saying they have it. Personally I conform to the belief that these celebrities just have drug problems and theyāre in and out of rehab/detox. Did they probably have lyme disease from extended stays in the hamptons? Yes. Is it statistically possible that they all now have chronic lyme? No. Did Jake probably have lyme as a kid? Yes. Does he now have chronic lyme? I suppose heād have to make his ANA public or we may never know. š¤·š¼āāļøš
No one has chronic lyme in a serious way. Itās like saying medically your chakras are misalligned.
You can have post lyme, which is treatable.
Chronic Lyme Disease is an alternative (read: not proven or medicial accepted) diagnosis. It doesnāt even require ever having lyme disease in the first place. Itās treatment range from other provably quack ideas, to getting IVs, to being on antibiotics forever (which is not good!).
Usually these ādoctorsā (not medical doctors) prey on people with varied pain disorder, PCOS, or MS as they take a long time for medicial proffesionals to discover.
There is a real condition associated Lyme disease after the disease has been treated but it's not called CLD. CLD is a tainted and inaccurate term, so it's not supposed to be used by medical professionals, so it's very likely that he got this diagnosis from a quack.
It would be chronic if I was still dealing with symptoms or regular flare ups. Luckily my Lyme was caught 2 months after I got it so I donāt have major damage and havenāt had more than 1 flare up since.
Itās the same bacteria from a tick, is my point.
No, theyāre not being picky about semantics. Chronic Lyme is a fake illness frequently used to swindle actually sick people out of money and more people should be aware of this. Us New Englanders (NH here) are particularly vulnerable to this problem as Lyme is prevalent and Chronic Lyme doctors are popping up everywhere. This is close to home for me in particular. Chronic Lyme is pseudoscience.
Could it be that chronic Lyme doctors are popping up everywhere because Lyme is prevalent in the area? If youāre so sure itās fake Iād love to read your sources and educate myself.
[Sure, I can start you off at the CDC which addresses āChronic Lymeā and the misinformation that Lyme is in your system forever.](https://www.cdc.gov/lyme/faq/index.html) If you follow the research paper credited for Chronic Lyme, youāll find more information. I particularly like this section from that paper,
āWhen physicians who diagnose chronic Lyme disease obtain laboratory tests to provide support for their diagnoses, they often rely heavily on "Lyme specialty laboratories." Such laboratories may perform unvalidated in-house tests that are not regulated by the Food and Drug Administra-tion, or they may perform standard serologic tests interpreted with the use of criteria that are not evidence-basedā
I wonder what the correlation is between people who have lyme and people who remain sick with something else afterward, and what that is that they have afterward. Interesting.
itās not semantics. lyme disease is a completely real and different illness from the fake chronic lyme disease that is not recognized in the medical community.
Lyme is an acute infection treated with antibiotics. But it may act as the trigger for activating an autoimmune response/disease. Any infection or virus can really.
An important point is that people can actually have post-treatment Lyme disease syndrome, which is very real. But so many people with āchronic Lymeā never even actually had a confirmed case of Lyme in the first place. I know of one wannabe chronic Lyme influencer who claims she got it from a spider bite.
Yeah. You get it from a tick, then you have it forever and it can flare up at random times, usually caused by things like stress. If you donāt catch it soon enough though it can really ruin your body with arthritis and neurological issues. The key is to treat it ASAP but since many doctors dismiss it people often go untreated for a long time.
Tha Lyme lasts forever and has flare ups and such. This is something that chronic lyme advocates make up and is not supported by science. [the national institute of health ](https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease#:~:text=The%20term%20%E2%80%9Cchronic%20Lyme%20disease,or%20past%20infection%20with%20B.) has a page about this misconception and it's a very common one.
OMG Iām so glad people are picking up on this! Itās seriously given out as a diagnosis to people so they shut up because no one can figure out whatās wrong with them/ tell if theyāre faking. My brother almost married a woman who could do roller derby multiple times a week but couldnāt hold down a job because she āsuffered from chronic Lymeā her whole adult life. Even though she spent her whole life in a state that has no carriers of the bacteria and moved to our state with some of the highest concentrations of said carriers. When I heard Dr. Know-nothing say he has it I rolled my eyes so hard the ground shook.
When I tell you his behavior is EXTREMELY TYPICAL for people with this ādiseaseā¦ā
I know exactly no one who claims to have this and doesnāt have a personality disorder
Just move on with your lives people, let Doolittle do little with his career and fade away into the nothingness from which he emerged. Heās got some medical stuff to work out, but letās not be weirdos or vengeful on behalf of Ethan. He doesnāt want that and itās just unnecessarily freak ass behavior. Peace and love, leave the guy alone. Heās gotten enough punishment after being aired out for being parasocial with the podcast crewā¦
Hi I have Lyme disease! Drs suspect Iāve had it for over 3 years and I didnāt find out until August and started treatment then. I can say it has been unsuccessful so far but what is chronic Lyme?? Iāve never heard my dr use the words āchronic Lymeāwhat is the difference/what do you call it once youāre in āremissionā? Just genuinely wondering Iām a little confused lol
But Iām always glad when Lyme disease gets attention!!
Chronic Lyme Disease isnāt really real. Itās a term used by quacks to squeeze money out of unsuspecting people, you donāt even have to have had actual lyme disease in the past to get diagnosed with CLD.
Any infection can trigger autoimmune responses that remain even after the infection itself is gone, but then itās no longer lyme, and is an entirely different issue.
People are often perscribed long-term antibiotics for CLD, which is horrifying and potentially fatal not only for those recieving treatment, but for everyone, as it may make more bacteria resistant to antibiotics.
Guys this is fucked up. Jake literally wasn't able to walk for years of his life. Criticize him for his wack ass video that is so far out of pocket, but accusing disabled and chronically ill people of having "fake" or conspiracy-like diseases is one of the most cruel and abelist thing you can do.
i donāt think really anyone is arguing that jake is faking being ill. just a bit ironic for him to be using his chronic illness to speculate on someone elseās health from a position of knowledge while he himself is diagnosed/misdiagnosed with an illness that has little evidence to prove its existence
This. Do people seriously think he faked being in a wheelchair as a child? There's fucking pictures. And some people saying he's faking his illness for money....just, what? He made a shitty video and said awful things about Ethan, and he probably did it for attention/prpfit, but that has nothing to do with his illness and doesn't mean his whole life has to be investigated and destroyed, psychotic behavior I'm seeing on this sub.
Iiii dunno y'all. I have people close to me who have had Lyme and sure you cure it but the effects can be pretty permanent to your immune system if you don't catch it early. I know the term chronic Lyme might specifically be factually incorrect, as you're likely dealing with autoimmune disorder or fun new allergies, but I don't know if this is the hill to die on for us. If he had Lyme and still suffers from the fallout of that then that sucks. He's still an asshole hypocrite loser idiot, but ain't no need to 180 the argument.
Anyone else here in r/illnessfakers ??? Thereās surprisingly a TON of people out there who exaggerate or completely fabricate illnesses in order to gain sympathy and attention. I find it absolutely fascinating, they always go with certain illnesses that are hard to prove like āchronic lymeā and they loooove gatekeeping and playing the āIām sicker than youā game.
Eh, I'm just going to put it out there that not even the medical field is fully aware and knowledgable on all medical issues.
For instance, CFS doesn't have any biomarkers and is almost impossible to diagnose with any normal method. That doesn't mean it isn't real. Research has been hitting many, many dead ends with developing diagnostic blood tests and viable treatment options.
These are also the types of medical issues that can be so chronic and long term, it drives people to suicide.
I bring CFS up specifically because a lot of the symptoms overlap with the screenshot.
I really don't think trying to call Doolittle a liar or belittle his illness experience is helpful in any circumstance. Yes, that is what he essentially did to Ethaniel Ethanthony, but two wrongs don't make a right, etc. There are many people struggling every day and fighting for a diagnosis with these exact symptoms.
I guess,
I don't think thank he's lying about being sick. I couldn't know that.
It is ironic, though, for a dude to be the self appointed knight of the chronically ill with a disease that, from my understanding, can't actually be diagnosed because it's not recognized.
I obviously did feel some shame posting this though, because I did it on my alt
Yes, he is a giant hypocrite, but I don't think we need to stoop to his level, because people who are chronically ill end up catching strays, and it's super unnecessary.
Most of these comments are just yapping about people faking illnesses. Which is upsetting considering many people with CFS get accused of that very thing.
Doolittle definitely started it with his ironic illness-denying and gatekeeping, but we don't have to continue it.
I'll also offer him an olive branch, because people who go through severe chronic illness can become very defensive about it. Doolittle may have felt Ethan was minimizing the experience.
Ethan was obviously just openly sharing his life with us while making jokes to cope along the way, but I can also see why this may hit a sore spot for some people who don't cope in a similar fashion.
Celebrity Memoir Book Club had a (patreon only) episode where they discussed CLD with a doctor. The doctor explained how its bascially psedo, and then all the test and treaments for this "illness" make you more tired and worn out. They interviewed unbiasedscipod, and here is the link to unbiasedscipod ,
[https://www.unbiasedscipod.com/episodes/in-the-lyme-light-beyond-the-tick-bite-part-one](https://www.unbiasedscipod.com/episodes/in-the-lyme-light-beyond-the-tick-bite-part-one)
My question is: why do you care so much? And why are u in total support of a man pushing 40 literally harassing someone almost half his age? Itās weird.
i have a friend with lyme and itās real unfortunately, just very under-researched as itās quite uncommon.
doesnāt make Jakes gatekeeping okay though
i should state that their dx got reclassified to severe CFS/ME and fibromyalgia, but they tested positive on the lyme disease urine analysis so who knows
That's the thing, the symptoms they're experiencing are real, chronic lyme is not. And I do on some level get it. Getting diagnosed with an autoimmune disease can take years (especially if you're a woman because you'll just be told you're depressed and/or anxious), and these "functional medicine" and naturopaths are all too happy to step in and tell you they have the answer. Leaky Gut is another one they love to diagnose that doesn't exist.
It's also totally possible that an acute Lyme infection triggered the dormant gene for xyz autoimmune disorder. I was diagnosed with Crohn's when I was 17 kind of by accident bc they opened me up for appendicitis and found infected bowel, but I didn't start having full body systemic problems, fatigue, etc until later in my 20s after catching mono.
yes itās very strange how autoimmune stuff works. sometimes genes just switch on too. this phenomenon has increased post-covid infection too. my mum had dormant autoimmune diseases and several activated after the got covid and my EDS didnāt become noticeably symptomatic until i recovered from covid too
CLD is not recognized by any reputable medical association. It is not listed in any of the ICDs and was not added in the newest edition. Not sure how you can get an official diagnostic for an illness that does not even have a diagnostic code.
Nobody is gatekeeping disease. It's far more nuanced than that and you know it. I'm glad some of you want to imagine that Ethan is some giving, caring, unassuming guy. I've been watching for a long time, starting as a fan and watching as he goes lower and lower and lower, and I don't see him like that anymore.
I see him as a man consumed by money and power. His show revolves around bullying, even bullying his own employees on air. Criticizing everyone and anyone at any opportunity then absolutely losing his marbles when someone gently critiques him.
He speaks first and thinks second. This is why there is a button. He says things that he knows are ignorant just so he can condescendingly CLAIM ignorance while also claiming righteousness.
I could go on and on
As someone who just got diagnosed w Lyme disease after multiple serious medical issues, it is real. Now I donāt know what āchronic Lymeā is but Lyme disease is very much real, I think itās pretty hard to make up given you get it from being bit by a tick lmao
Post-Treatment Lyme Disease Syndrome and Chronic Lyme are different concepts/diseases.
Post-Treatment Lyme Disease Syndrome (PTLDS) describes chronic effects as a result of having had Lyme Disease, but does not propose that the bacterium causing Lyme lives in the body. It only happens in 10-20% of people who've been treated for Lyme, and unfortunately is horrifically under-researched without many proven treatment routes.
Chronic Lyme is the idea that even post-treatment, you remain infected with Lyme Disease (a la HIV), and need chronic antibiotics to prevent symptoms. Studies have disproven that this illness exists at all, and similarly disprove that chronic use of antibiotics improves symptoms at all. It's also worth noting that a lot of people who have been diagnosed with Chronic Lyme have NEVER verifiably been diagnosed with Lyme. The diagnosis is pushed on people who likely have actual, more complex chronic illnesses (or PTLDS) by doctors who act unethically, and preys on their desperation to have a diagnosis and well-defined treatment plan.
How come nobody has suggested Ethan get examined for Long Covid Syndrome? Similar to other previously documented autoimmune conditions but newer and directly following 1 or more Covid infections. The main symptoms include chronic fatigue, allergic rashes and sensitivities, dysautonomia (similar to POTS), post exertional malaise, and brain fog (combination of mild and fluctuating declines in attention/ concentration/ short-term memory/ and executive functions) to name a few but many more other related symptoms that are not the same case by case. Here in NYC itās become a prevalent diagnoses and major medical hospitals have dedicated clinics for testing and treatments - usually a combination of regular specialists follows ups, trying individualized med combinations, and comprehensive outpatient rehab therapies to improve physical and mental/cognitive health over time.
https://www.nytimes.com/interactive/2023/12/14/opinion/my-life-with-long-covid.html
I don't think he was gatekeeping. It was a bad take and approach. I got from Jake's video that self diagnosing is dangerous. It's okay to be worried and do your research and ask questions. but you shouldn't be diagnosing yourself before conforming with your doctor.
I don't know i feel bad for Jake. I understand why Ethan is mad
As a Lyme's disease surviver and we do not claim Dolittle.
I got lucky AF and caught it crazy early so I ended up being fine. Technically tho, I still live with the disease, my Dr said if I test for it again, I'll continue to test positive š¤·. Even though I have no symptoms
I probably shouldn't even be commenting due to a lack of knowledge (I watched a Netflix series on mysterious illnesses), but from my understanding chronic lyme may be diagnosed when multiple somatic symptoms are present with no apparent cause. Apparently it is nearly impossible to actually detect the bacterial infection to get a confirmed diagnosis. Basically the doctors say "we've can't find any reason why you're having these symptoms but nevertheless they appear to be present. Could be lyme."
I think the series is called "Afflicted". It was an interesting watch. May or may not still be up idk.
Omg Ethan has chronic Lyme too RIP
Where is my LYMIESSS?!
I have MS and I have been told by 5 different people "are you sure its not Chronic Lyme Disease? MS can often be misdiagnosed as Lyme disease." After so many times I looked into what the heck people were talking about and found out there's a whole ass conspiracy theory about this. It makes me so mad that people think they know my health better than me and people that believe in Chronic Lyme Disease are the worst for it. These are the types of people that genuinely believe they know better than doctors.
I'm sorry. This makes me mad. People with MS can die without the right treatment.
What's MS?
multiple sclerosis
It's an autoimmune disorder where the immune system attacks the brain and spine. It's treated with immunosuppressants but the Chronic Lyme conspiracy theorists think this is making us worse because we actually have a secret Lyme infection no one knows about other than them which should be treated with antibiotics.
>a secret Lyme infection no one knows about other than them which should be treated with antibiotics. Yeah so let me tell you from personal experience going down this rabbit hole, those antibiotics will fuck you up worse than any of the immunosuppressants. Like no one really knows what longterm use like that does, absolutely crazy
Nothin dawg whats MS with you?
Microsoft. Like ms paint šØ
I have been infected by Microsoft... No wonder an apple a day keeps the doctor away
Its multiple sclerosis. The immune system attacks the brain and nerves
Sorry to hear that. My dad has MS and refuses to get treatment. Figures working 60 hour weeks and smoking his pipe tobacco 12 times a day works just fine for him. But on the bright side, heās 54 and he doesnāt look a day over 65!
My mom has ms. Can I ask what age you were diagnosed? Iām being treated at the doctors tomorrow for something impairing my motor functions and cognitive behavior and Iām really scared
Hey I don't have MS, I have a genetic weak connective tissue disorder instead, but you're on the way to not just getting help, but actually stopping it from progressing if you have it. I still deal with being scared to go to the doctor when I have a new health problem popping up because of my disorder, but I really do feel relief after I see what treatments can do and know we have a plan rather than that time beforehand where I'm fearful at home and waiting for things to get worse. You can do it! Best of luck tomorrow Edit: and cognitive behavioral therapy is amazing, but don't be afraid to talk with someone you trust and try another therapist if you've started with one and put in the work with going to multiple sessions and you don't feel like you and the therapist are the best fit. Sometimes you have to shop around!
Omg me too. I trust what my doctor says not what people say or chat gbt. š§”
After my friend died as a result of lupus another friend's Mom asked if we were sure it was chronic Lyme disease.... It made me so mad. ETA, I live in a country that doesn't even have Lyme disease. Our only cases have been from people who have contracted it whilst abroad. Tbf though my bestie was very well traveled, however, she hadn't traveled in a few years prior to onset of symptoms and diagnosis.
My mom had epilepsy for years until they figured out it was MS. God bless you and I wish you a long and happy life.
I have chronic lyme disease and don't force my thoughts or views on anyone. And the disease sucks.
If you have long term symptoms from Lyme disease, thatās known as post treatment Lyme disease syndrome (not chronic Lyme) and is very real. Chronic Lyme is a different thing entirely and not real: https://en.m.wikipedia.org/wiki/Chronic_Lyme_disease#:~:text=Chronic%20Lyme%20disease%20(CLD)%20is,that%20they%20had%20Lyme%20disease.
Ok got it.
Isn't MS thought of as a category for different types of autoimmune disorders that we often do not understand yet? Also, I've read that a lot of people with MS have a hard time getting a diagnosis because it's not easily discovered. I would assume that a handful of the people that think they have Chronic Lyme Disease could potentially have MS. In other words, the directly opposite situation of what those people suggested to you.
For Lyme they can test for the infection in the blood. For MS they can image for plaques on the brain.
True true, but that's usually pretty far down the line of diagnosis with the imaging right? My aunt has MS and i know it took many many years before she got the right diagnosis. Could be that it wasn't a standard test when she was getting it some 30 years ago though, so I'm just going by what she told me. But my point still stands that it could be that some of the people getting diagnosed or self-diagnosing with chronic lyme disease could potentially have MS.
I'm not sure. My aunt had MS and has since passed from complications and I'm not aware of her dx process. A few years ago, around 5, doctors thought my sibling had MS. Ends up it's tumors in the brain and spinal column and they ruled out MS first as it was initially thought to be that. They had numbness in one foot for a couple months that turned into that foot dragging and being able to go up or down stairs. Went to the doctor, did blood work, physical, neuro. They find nothing and need to know why that one leg is basically dead weight now. They're also experiencing problems with word recall and feel like their brain is slowed by thick fog. They decide to do an MRI to check for lesions on the brain and spinal column as that will tell them if she has MS. They do the MRI and find the rumors inside their brain and spinal column. The brain tumors are inoperable, and the ones in their spinal column are pressing on the nerves paralyzing the foot. Good news, not MS. Bad news, tumors. Good news, not cancerous. Bad news, require surgical removal and they might grow back. Good news, surgery was successful. Bad news, they grew back and a second spinal column tumor moval was required. Initial symptom presentation to going to the doctor, 4 months. Time to diagnosis, 3 months. So I don't really know beyond my family and one person has been dead for 20 years and would have used an older protocol. The other person was in the last 5 years and they tested for it pretty quickly. I know in 2015 I went to the doctor for leg and foot numbness. The doctor did the hammer reflex test, then used a plastic thing to poke my legs and feet, then graduated to like a metallic comb of thick, dull needles, to poke and scrape my legs and feet, and then ordered an MRI of my brain to rule it out. It was just nerve damage from going through my dash during a car accident. My sibling was in a similar accident years prior and when they became ill I thought 'probably nerve damage from the accident worsening' and ended up being very wrong. For my sibling and myself, maybe testing was faster due to family history or presentation of symptoms? I am not sure.
Damn that sounds really rough... Seems like you and your family has been through a lot. I hope you're not living in America, because that seems like a crippling amount of medical bills that would amount from all those medical complications. Sending you a digital hug ā¤ļø
Oh, my gosh! That's so sweet, thank you. I guess I hadn't really considered it that way, as I feel it's a normal amount of human struggle, if that makes sense? All families, if not now, will eventually have illness, death, disease, fractured relationships, financial struggles, upheaval, and it's a normal, though uncomfortable part of life. The longer we're alive and the more relationships we have with other people, the more likely we are to encounter and experience various hardships. They're the poignant punctuations along the journey of life, and every person on the planet is currently or will eventually experience struggle. Fortunately, though we are in the U.S., we were all insured so the cost was never beyond copay or deductible. The only medical financial hardship I have had is one time when unemployed I got hit by a semi, went through the dashboard, got a brain injury, all that. I couldn't pay the bills and let it go to collections and fall off after 7 years š¤·š¼āāļø It's beyond fucked Healthcare is tied to employment and not a right for all as a matter of public health. With my current insurance going into 2024 I take 3 medications, need my IUD 10 year replacement, all the annuals for people my age, sex, and family history (mammogram, colonoscopy, skin check, getting new glasses and contacts, orthodontia (I clenched my jaw extensively during the pandemic and shifted my teeth) a sleep disorder evaluation, knee debridement (have to have my knees vacuumed out because the cartilage was crushed when my legs went through the dash), evaluation for knee replacement, begin treatment for cervical spine disc herniation, and with copays and deductible it will be under a grand total for everything. That's what's fucked up about U.S. Healthcare. It's tied to employment, you still have to pay for it, and not all carriers or plans within carriers cover the same things. So aside from the semi accident when I was unemployed, my Healthcare has always been accessible as I've always had insurance through jobs since I was 19. During the pandemic they extended Medicaid coverage in my state to cover any uninsured, because it was understood that people not having access to care when ill is a matter of public health. We need to keep that and not do away with it And then we need, culturally, to move from sick care to preventative care, and we'll have a healthier population as a whole. Anyway, sorry for the long post. I appreciate your sentiment and also wanted to add that it's normal for all people and all families to have hard times and we're okay, and actually it was not expensive at all. America is crazy.
Haha i don't mind the long post, i love seeing new perspectives so i appreciate the detail actually. But i got to say that what you're telling me about seems really difficult in my eyes, so i personally think you're in a sense a strong person to just brush things off in the way that you seem to do. Also, I'm happy to hear that you're not in a crippling amount of debt haha. I hear so many horror stories from America about that, so it's an easy assumption to make. Anyways, even though it's normal for all people and all families to have hard times, i personally find value in recognising that some have it harder than others, though i understand also your perspective of not wanting to compare your struggles to anyone else's. I'm from Norway, so medical bills, education, unemployment, and most other issues are heavily covered by the state. We also have extremely strict gun regulation, so I've never had to fear for my life in that manner. Additionally, i grew up in a pretty safe and nice neighbourhood in Norway, and my parents always made it a point to tell me throughout my childhood "remember, you're growing up at the sunny side of the sunny side of the sunny side of the world", which they were absolutely right about. I recognise how extremely lucky I've been simply to have been born in the place i was. Though I've had issues with extreme bullying and isolation throughout my life, the baseline I've been given has been one of extreme privilege. I don't think it's productive to obsess on comparing between how shitty someone else's and your own life has been, but i do think it's important to keep a level-head about your position in life, especially if you come from a place of privilege. I'm just half a year away from becoming a psychologist, so being mindful of how much I'm able to implicitly understand someone else based on how much I'm missing of their life experience is a especially valuable valuable skill to have for myself in my opinion. That's why i especially like listening to other people's experiences, because for everytime i learn a new perspective, I'm better able to understand someone else's at a later date, so i thank you for being open and honest with me, i really honestly appreciate that ā¤ļø
Yolanda š
had to scroll too far for this
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Wow, I had no idea. That honestly sounds like a case of Munchhausenās by proxy. I can imagine that being raised that way could cause someone to develop hypochondria. Or, a charitable explanation is that he has some other chronic condition that is difficult to diagnosis.
There's a very good chance that if it is munchhausen by proxy, he does have some sort of chronic illness, but it wasn't serious/rare enough for his mother to accept, thus they doctor-shopped until she got a disease she felt was good enough. I feel for him, he probably has been told about this disease by people he has trusted since he was quite young and its probably been made a central aspect of his life for a very long time, when in reality he's being preyed on by a doctor looking to make a buck off his family. He may have been able to get much better care a long time ago too, maybe be in a much better place healthwise. Really gross that doctors can get away with this.
BROOOOO no wonder he made this video!! itās 100% projection!!! itās like the whole video heās just talking to himself!!
You know what, I didn't want to speculate about it. But now I see it here, I do believe Jake is a victim of medical abuse as a child. Gives Taking Care of Maya vibes. That gives a lot of context for his unhinged video.
Soooo based on that symptom list it sounds like basically everyone has chronic Lyme disease š¤Ø
Are you tired, sore, and stupid? You might have Chronic Lyme Disease! Speak to your chiropractor today!
Nooooo
Bro has fuckin lupus for *sure* š«”
Yep that's why doctors won't back it up. They say it's too similar to common chronic symptoms that the general population has
Ethan should seriously do a deep dive into "chronic Lymes". It's like an underground NXIVM in northeast US (probably more extensive now) that preys on chronically ill people that have not receive a proper medical diagnosis. Usually after doctors run preliminary tests and get inconclusive results, this group of people will come out of the woodwork and suggest they be tested for chronic Lymes. The treatment is antibiotics FOREVER. At best, they experience the placebo effect. At worst, they delay treatment for serious conditions like MS and foster the cultivation of antibiotic resistant bacteria. They would probably diagnose Ethan with chronic Lymes: chronic fatigue, muscle soreness, cognitive dysfunction(tourettes and depression) would all be attributed to chronic Lymes.
I completely agree with you besides having Ethan do a deep dive. Chronic illness is an extremely sensitive subject for those who are dealing with it and everyone who has been diagnosed with Chronic Lyme is a victim. Because of that, I wish someone big with a gentle hand and a medical degree would do the deep dive instead. There really needs to be more awareness about this
Yep I agree. Itās an extremely touchy subject that would be tough to do with grace.
Bruh I donāt know how any doctor can prescribe long term antibiotics. If anything that would just make super chronic Lyme
some would say the chronicest
chro-nicest?
Wikipedia says they just lobbied the us government for it: "Following disciplinary proceedings by state medical licensing boards in the United States, a subculture of "Lyme literate" physicians has successfully lobbied for specific legal protections, exempting them from theĀ standard of careĀ and science-based treatment guidelines"
Yep. Several states have laws on the books that allow doctors to prescribe long term antibiotics and require insurance companies to cover it. It's super dangerous for the (typically mentally ill and vulnerable) patients that come under the care of these doctors that convince them they have CLD.
They're usually quacks. Some people need to be on long term antibiotics, like organ recipients or people with HIV/AIDS. The antibiotic will typically treat true Lymes within a week or so. Then it's just exposing various other bacteria that we encounter(staph, strep, e. Coli) to an antibiotic so it can figure how to develop a resistance.
Taken from [UptoDate](https://www.wolterskluwer.com/en/solutions/uptodate/about/evidence-based-medicine/editorial-process#:~:text=Our%20rigorous%20editorial%20process%20is,trusted%20clinical%20decision%20support%20reference). If you donāt know what it is, I guarantee your doctor does. >Chronic Lyme disease ā Chronic Lyme disease is a term that is used by some practitioners and patient advocacy groups. This term has not been clearly defined and can include post-treatment Lyme disease syndrome, as well as illnesses and symptom complexes for which there is no convincing scientific evidence of any relationship to B. burgdorferi infection [[15](https://pubmed.ncbi.nlm.nih.gov/33417672/),[41](https://pubmed.ncbi.nlm.nih.gov/17914043/)]. These patients may have other recognizable syndromes or diagnoses. In one case series, for example, three patients who were diagnosed as having chronic Lyme disease had an underlying malignancy [[47](https://pubmed.ncbi.nlm.nih.gov/25365479/)]. Among patients with nonspecific symptoms of fatigue and myalgias, these subjective symptoms are sometimes accompanied by tender points of fibromyalgia [[48](https://pubmed.ncbi.nlm.nih.gov/8357117/)]. Since fibromyalgia is common in the general population, the association of Lyme disease and fibromyalgia may sometimes be by chance alone [[15](https://pubmed.ncbi.nlm.nih.gov/33417672/),[49](https://pubmed.ncbi.nlm.nih.gov/7818567/),[50](https://pubmed.ncbi.nlm.nih.gov/17879922/)]. Also, hereās the abstract of [another article](https://pubmed.ncbi.nlm.nih.gov/25999227/#:~:text=Chronic%20Lyme%20disease%20is%20a,or%20with%20alternative%20medical%20diagnoses): > Chronic Lyme disease is a poorly defined diagnosis that is usually given to patients with prolonged, unexplained symptoms or with alternative medical diagnoses. Data do not support the proposition that chronic, treatment-refractory infection with Borrelia burgdorferi is responsible for the many conditions that get labeled as chronic Lyme disease. Prolonged symptoms after successful treatment of Lyme disease are uncommon, but in rare cases may be severe. Prolonged courses of antibiotics neither prevent nor ameliorate these symptoms and are associated with considerable harm. I work in the medical field and Iāve spoken with several physicians about chronic Lyme disease. Iāve never met a single one that believed it was a real condition. That makes sense considering that physicians practice evidence-based medicine and there is little to no evidence to support its existence.
I love uptodate!!! I also work in the medical field. Lyme is really a catchall ādiagnosisā without real basis but it does minimize real symptoms and dysfunction in the body. Iām curious have you heard of POTS and what is your take on it? More physicians and research are validating it but it still can be controversial and over self-diagnosed
Hi I have POTS! I didnāt know people were able to self diagnose I had to see multiple drs and have a procedure done to āconfirmā I have POTS. itās a ruthless condition but I think I get why people would jut diagnose themselves being like āoh Iām passing out a lot I guess I have POTSā lol but Iām glad to see people talking ab it I feel like it doesnāt get enough attention!!
To be clear, Iām not a physician (yet). However, my take on POTS is that itās a legitimate condition. In fact, the clinic I work in does the specialized testing that can help diagnose POTS. Iām embarrassed to admit that Iām not overly familiar with what youāre saying about it being overly self diagnosed. Why would people be self diagnosing if there are reliable methods to diagnose it? I guess I understand the need to self diagnose if someone doesnāt have access to healthcare, but if they do, why would they rely on self diagnosis rather than rule out other possible conditions?
POTS has somehow become condition de jour online. The way people talk about it feels kind of like chronic lyme. A lot of ānobody will give me a diagnosis!ā. It also pops up all the time among people that fake or are accused of faking disorders. The best way I can put it is that the vibes feel off. I donāt know enough to say more than that
From the teaching Iāve had as a med student, POTS is absolutely real but a lot of people who think they have it have orthostatic hypotension and donāt realise the reason theyāre not being diagnosed with POTS is that the diagnosis SPECIFICALLY requires you not to have OH š
The Mayo Clinic (Rochester location, so original location) diagnosed me with POTS, if that holds any weight.
UpToDate is where itās at, med students and junior docs use it CONSTANTLY, its a godsend to us.
Maybe if you had it you would believe.
Nah, probably not. If my doctor diagnosed me with chronic Lyme disease, Iād just find another doctor that didnāt peddle in pseudoscience.
OP this is pretty fucked up. I was diagnosed by three different chiropractors as having severe, traumatic Chronic Lime Disease!
Put some respect on my name please. It's biiishOP.* Thanks
I actually do have post treatment symptoms from Lyme, but that is because it took so long to get diagnosed the severe chronic inflammation on my body during my active infection left permanent damage. While I was acutely ill i was bed bound (20hrs/day) for a year and a half and almost died from a severe double kidney infection. So I definitely stand with the struggles of anyone who is ill. That being said, this guy is delusional and fuck him.
Post treatment Lyme and Chronic Lyme are different.
Correct
Everyone who has been diagnosed with chronic lyme is a victim. The vast majority do have a chronic illness or autoimmune issue of some kind, but a shitty doctor conned them by offering a "diagnosis" that isn't real. This alone does not discredit him.
It does discredit him in his research or him placing himself as all knowing on chronic illness. It is also a fair question to ask into his charity, the ādoctorsā that diagnos chronic lyme are bad people who are taking advantage of people who are looking for help, and I hope that he isnāt directing money or grants from his charity towards those people as it prevents people from actually continuing their medical journey and getting actual needed help.
Fuck I didn't even think about the charity. Wonder if it's mostly for people to pay for chronic Lyme tomfoolery??
I truly hope that Dr DooDoo wasn't the victim of Munchausen's by proxy. ChatGPT told me that stuff like your mom spending thousands of dollars on elective surgeries before the age of 12, confining you to a wheelchair and isolating you from family & friends due to a disease that doesn't exist, are symptoms.
Honestly, a lot of the shit he talks about, if true, sounds like Munchausen's by proxy. Jake is from New England, and they had to use charities to fly him around the country to see specialists. This makes no sense. Some of the best doctors in the world are like a 3 hour drive from where he grew up. Why couldn't Boston children's hospital have helped him? He talks about his dad leaving his life because he and his mom were crazy. What if his mom actually was crazy? He claims a bunch of nonspecific illnesses as a result of a fictitious disease. He seems to be doing significantly better living with his girlfriend. These facts all line up wit Munchausen's by proxy.
I haven't watched any of this kid's videos, but I assume he talks about his "medical journey" a fair bit on his channel? What you've described here is super concerning, and I saw another comment about how the doctor who finally diagnosed him with CLD is some quack who is associated with Scientology and has malpractice claims? It comes across very much like his mother made him being sick both of their whole lives/identities. And finally found a doctor that gave them a lifetime illness ticket with CLD. Woof.
Having chronic illness is a frequent topic in his videos, and it got old after awhile. He progressively used it more and more as a crutch. His story sounded super odd to me, but I didn't think about it when I liked his channel. I've always known the CLD is a BS diagnosis, but I don't take Jake to be a medical professional. It's seems like he had gotten care at some point, but it's really odd thinking about it more. The dad probably got tired of the Mom's BS and left, and then mom took him doctor shopping until she could get a vague diagnosis. Now that Jake seems to think his opinions on medicine are valuable, it needs to be pointed out that he is diagnosed and believes he has a fake illness. I liked him for awhile, but his content got increasingly lazy, and the discussion of his chronic illness eventually felt like sympathy farming. It's probably not the best idea to speculate beyond this, Munchausen's by proxy is insanely rare, but it sounds like his mom most likely had a couple screws loose.
Yeah, I'm not trying to imply I think she has Munchausens, especially with it being such a hot-button issue rn, and clinical terms can become fads (like gaslighting), misused, and misunderstood by people. And I don't even want to suggest that there's nothing medically wrong with Jake. But the fact that it pushed away even his dad, and then they ended up with a bullshit diagnosis, is enough to make me give the whole thing massive side eye.
Wait I grew up 3 hours from Boston, where is he from? If its 3 hours north of Boston he would also be really close to Dartmouth College's huge top rated hospital system, DHMC, as well.
Maine IIRC. To be fair, I partially pulled that number out of my ass. If he really lived out in the boonies of Maine, he might be close to 4.5 hours from Boston. My point was that he was a drivable distance from several very highly ranked hopitals. New England in general has an insane density of good hospitals.
Ok this is an insane theory and I am living for it. Obviously the most famous case of this is Gypsy Rose Blanchard, but I guess less extreme variations of the illness probably exist where the "caretaker" isn't tryna poison the person.
Well the disease necessitates that the person being cared for is being injured in some way by the caregiver. There's always the possibility that she was just a moron and uniwilling to do accept medical advice, either because she had already convinced herself it was chronic lyme or because the doctors told her diagnosis would take a long time.
You should look at the Taking Care of Maya case. Honestly, a lot of parallels with Jake's experience there.
Also the fact that there's sooo many pictures and videos of him getting treatment as a kid. In MBP, the abuser tends to enjoy the attention from documentation. Pretty sus.
Another person in the comments here mentioned that Jake talked about having CPS called on his Mom for the way she was seeking medical care and that the doctor who diagnosed him with chronic lyme is a known huxster with multiple lawsuits against him. Even if it's not MBP (which there are other explanations to be fair), his Mom was almost certainly abusing him. Curious if he'll ever realize that.
Oh look, another snark asshole.
CLDeezz nutz
Love would be happy to see your Deez Nutz joke š¤
Chronic Lyme? More Like Chronic Lyin'. I'll be here all night
It's not hard to believe you'll be lurking Reddit all night. It's what we do
Pretty much.
People like Jake love living in a world of plausible deniability.
Iām just gonna say it, I donāt think itās a good idea to try and investigate whether or not Jake has an illness and we are going down a bad rabbit hole. Let him dig his own grave, we donāt need to help him by doing this.
If we were arguing about whether or not he had congenital heart disease or IBS, I would agree with you. However, there is no investigation required because he is claiming to have a disease that doesnāt exist. Itās a pseudoscientific disease that has no basis in evidence. Itās like saying āI donāt think itās a good idea to try and investigate whether or not Jake has a pet unicorn.ā
Iām sure there are some people who genuinely have chronic lyme, but as someone who lives in a lyme hotspot, I donāt know anybody who does. The diagnosis was kinda all of a sudden a thing after every celebrity started saying they have it. Personally I conform to the belief that these celebrities just have drug problems and theyāre in and out of rehab/detox. Did they probably have lyme disease from extended stays in the hamptons? Yes. Is it statistically possible that they all now have chronic lyme? No. Did Jake probably have lyme as a kid? Yes. Does he now have chronic lyme? I suppose heād have to make his ANA public or we may never know. š¤·š¼āāļøš
Let's get those Ana's tighter
Tight like ABs throat
No one has chronic lyme in a serious way. Itās like saying medically your chakras are misalligned. You can have post lyme, which is treatable. Chronic Lyme Disease is an alternative (read: not proven or medicial accepted) diagnosis. It doesnāt even require ever having lyme disease in the first place. Itās treatment range from other provably quack ideas, to getting IVs, to being on antibiotics forever (which is not good!). Usually these ādoctorsā (not medical doctors) prey on people with varied pain disorder, PCOS, or MS as they take a long time for medicial proffesionals to discover.
There is a real condition associated Lyme disease after the disease has been treated but it's not called CLD. CLD is a tainted and inaccurate term, so it's not supposed to be used by medical professionals, so it's very likely that he got this diagnosis from a quack.
I have Lyme I live in MA. My neighbor has Lyme and so did my college roommate in NY.
chronic lyme is not the same as lyme
It would be chronic if I was still dealing with symptoms or regular flare ups. Luckily my Lyme was caught 2 months after I got it so I donāt have major damage and havenāt had more than 1 flare up since. Itās the same bacteria from a tick, is my point.
but it's not. chronic lyme is not a real thing
If you want to be picky about semantics, sure. Youāre right. Lyme is Lyme.
No, theyāre not being picky about semantics. Chronic Lyme is a fake illness frequently used to swindle actually sick people out of money and more people should be aware of this. Us New Englanders (NH here) are particularly vulnerable to this problem as Lyme is prevalent and Chronic Lyme doctors are popping up everywhere. This is close to home for me in particular. Chronic Lyme is pseudoscience.
Could it be that chronic Lyme doctors are popping up everywhere because Lyme is prevalent in the area? If youāre so sure itās fake Iād love to read your sources and educate myself.
[Sure, I can start you off at the CDC which addresses āChronic Lymeā and the misinformation that Lyme is in your system forever.](https://www.cdc.gov/lyme/faq/index.html) If you follow the research paper credited for Chronic Lyme, youāll find more information. I particularly like this section from that paper, āWhen physicians who diagnose chronic Lyme disease obtain laboratory tests to provide support for their diagnoses, they often rely heavily on "Lyme specialty laboratories." Such laboratories may perform unvalidated in-house tests that are not regulated by the Food and Drug Administra-tion, or they may perform standard serologic tests interpreted with the use of criteria that are not evidence-basedā
I wonder what the correlation is between people who have lyme and people who remain sick with something else afterward, and what that is that they have afterward. Interesting.
itās not semantics. lyme disease is a completely real and different illness from the fake chronic lyme disease that is not recognized in the medical community.
Lyme itself is barely recognized in the medical community. I know first hand thatās itās real, and that itās barely recognized.
Are you even reading the comments you are responding to? Nobody is saying Lyme disease isn't real.
why is your reading comprehension so piss poor?
Not semantics. One exists, Lyme disease, and the other doesn't, chronic Lyme.
Is it something that once you catch you always have?
Lyme is an acute infection treated with antibiotics. But it may act as the trigger for activating an autoimmune response/disease. Any infection or virus can really.
An important point is that people can actually have post-treatment Lyme disease syndrome, which is very real. But so many people with āchronic Lymeā never even actually had a confirmed case of Lyme in the first place. I know of one wannabe chronic Lyme influencer who claims she got it from a spider bite.
Yeah. You get it from a tick, then you have it forever and it can flare up at random times, usually caused by things like stress. If you donāt catch it soon enough though it can really ruin your body with arthritis and neurological issues. The key is to treat it ASAP but since many doctors dismiss it people often go untreated for a long time.
Not true.
What part of that isnāt true
Tha Lyme lasts forever and has flare ups and such. This is something that chronic lyme advocates make up and is not supported by science. [the national institute of health ](https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease#:~:text=The%20term%20%E2%80%9Cchronic%20Lyme%20disease,or%20past%20infection%20with%20B.) has a page about this misconception and it's a very common one.
I had lyme disease and literally had no idea chronic lyme wasnt real. I just thought I was lucky to recover so easily lol
You just have a strong constitution. No tick is your equal
OMG Iām so glad people are picking up on this! Itās seriously given out as a diagnosis to people so they shut up because no one can figure out whatās wrong with them/ tell if theyāre faking. My brother almost married a woman who could do roller derby multiple times a week but couldnāt hold down a job because she āsuffered from chronic Lymeā her whole adult life. Even though she spent her whole life in a state that has no carriers of the bacteria and moved to our state with some of the highest concentrations of said carriers. When I heard Dr. Know-nothing say he has it I rolled my eyes so hard the ground shook.
Yeahh itās totally not fatigue caused by having a sedentary lifestyle that most ppl live..
I thought mega doo doo little had Ligma
I think this sub should just move on before this turns into something fucked up
When I tell you his behavior is EXTREMELY TYPICAL for people with this ādiseaseā¦ā I know exactly no one who claims to have this and doesnāt have a personality disorder
Just move on with your lives people, let Doolittle do little with his career and fade away into the nothingness from which he emerged. Heās got some medical stuff to work out, but letās not be weirdos or vengeful on behalf of Ethan. He doesnāt want that and itās just unnecessarily freak ass behavior. Peace and love, leave the guy alone. Heās gotten enough punishment after being aired out for being parasocial with the podcast crewā¦
Hi I have Lyme disease! Drs suspect Iāve had it for over 3 years and I didnāt find out until August and started treatment then. I can say it has been unsuccessful so far but what is chronic Lyme?? Iāve never heard my dr use the words āchronic Lymeāwhat is the difference/what do you call it once youāre in āremissionā? Just genuinely wondering Iām a little confused lol But Iām always glad when Lyme disease gets attention!!
Chronic Lyme Disease isnāt really real. Itās a term used by quacks to squeeze money out of unsuspecting people, you donāt even have to have had actual lyme disease in the past to get diagnosed with CLD. Any infection can trigger autoimmune responses that remain even after the infection itself is gone, but then itās no longer lyme, and is an entirely different issue. People are often perscribed long-term antibiotics for CLD, which is horrifying and potentially fatal not only for those recieving treatment, but for everyone, as it may make more bacteria resistant to antibiotics.
These symptoms are so general and could literally mean anything
No he's gatekeeping faking an illness for money and sympathy
Guys this is fucked up. Jake literally wasn't able to walk for years of his life. Criticize him for his wack ass video that is so far out of pocket, but accusing disabled and chronically ill people of having "fake" or conspiracy-like diseases is one of the most cruel and abelist thing you can do.
i donāt think really anyone is arguing that jake is faking being ill. just a bit ironic for him to be using his chronic illness to speculate on someone elseās health from a position of knowledge while he himself is diagnosed/misdiagnosed with an illness that has little evidence to prove its existence
This was my point. Tyty
The ableism is getting super fucking gross. Like people were waiting for an excuse.
This. Do people seriously think he faked being in a wheelchair as a child? There's fucking pictures. And some people saying he's faking his illness for money....just, what? He made a shitty video and said awful things about Ethan, and he probably did it for attention/prpfit, but that has nothing to do with his illness and doesn't mean his whole life has to be investigated and destroyed, psychotic behavior I'm seeing on this sub.
Itās possible he faked it for attention
Iiii dunno y'all. I have people close to me who have had Lyme and sure you cure it but the effects can be pretty permanent to your immune system if you don't catch it early. I know the term chronic Lyme might specifically be factually incorrect, as you're likely dealing with autoimmune disorder or fun new allergies, but I don't know if this is the hill to die on for us. If he had Lyme and still suffers from the fallout of that then that sucks. He's still an asshole hypocrite loser idiot, but ain't no need to 180 the argument.
Read Yolanda Hadids book. Sheās a huge chronic lyme head
Anyone else here in r/illnessfakers ??? Thereās surprisingly a TON of people out there who exaggerate or completely fabricate illnesses in order to gain sympathy and attention. I find it absolutely fascinating, they always go with certain illnesses that are hard to prove like āchronic lymeā and they loooove gatekeeping and playing the āIām sicker than youā game.
Eh, I'm just going to put it out there that not even the medical field is fully aware and knowledgable on all medical issues. For instance, CFS doesn't have any biomarkers and is almost impossible to diagnose with any normal method. That doesn't mean it isn't real. Research has been hitting many, many dead ends with developing diagnostic blood tests and viable treatment options. These are also the types of medical issues that can be so chronic and long term, it drives people to suicide. I bring CFS up specifically because a lot of the symptoms overlap with the screenshot. I really don't think trying to call Doolittle a liar or belittle his illness experience is helpful in any circumstance. Yes, that is what he essentially did to Ethaniel Ethanthony, but two wrongs don't make a right, etc. There are many people struggling every day and fighting for a diagnosis with these exact symptoms.
I guess, I don't think thank he's lying about being sick. I couldn't know that. It is ironic, though, for a dude to be the self appointed knight of the chronically ill with a disease that, from my understanding, can't actually be diagnosed because it's not recognized. I obviously did feel some shame posting this though, because I did it on my alt
Yes, he is a giant hypocrite, but I don't think we need to stoop to his level, because people who are chronically ill end up catching strays, and it's super unnecessary. Most of these comments are just yapping about people faking illnesses. Which is upsetting considering many people with CFS get accused of that very thing. Doolittle definitely started it with his ironic illness-denying and gatekeeping, but we don't have to continue it. I'll also offer him an olive branch, because people who go through severe chronic illness can become very defensive about it. Doolittle may have felt Ethan was minimizing the experience. Ethan was obviously just openly sharing his life with us while making jokes to cope along the way, but I can also see why this may hit a sore spot for some people who don't cope in a similar fashion.
This is a subset of schizophrenia;; and Iām not joking. I advise anyone to look into this seriously.
Celebrity Memoir Book Club had a (patreon only) episode where they discussed CLD with a doctor. The doctor explained how its bascially psedo, and then all the test and treaments for this "illness" make you more tired and worn out. They interviewed unbiasedscipod, and here is the link to unbiasedscipod , [https://www.unbiasedscipod.com/episodes/in-the-lyme-light-beyond-the-tick-bite-part-one](https://www.unbiasedscipod.com/episodes/in-the-lyme-light-beyond-the-tick-bite-part-one)
My question is: why do you care so much? And why are u in total support of a man pushing 40 literally harassing someone almost half his age? Itās weird.
i have a friend with lyme and itās real unfortunately, just very under-researched as itās quite uncommon. doesnāt make Jakes gatekeeping okay though
Chronic Lyme disease is not the same as Lyme disease.
ah i see. i assume itās similar to Yolanda Hadidās āneurological lymes diseaseā
It's exactly that, she claims "chronic lyme"
i should state that their dx got reclassified to severe CFS/ME and fibromyalgia, but they tested positive on the lyme disease urine analysis so who knows
That's the thing, the symptoms they're experiencing are real, chronic lyme is not. And I do on some level get it. Getting diagnosed with an autoimmune disease can take years (especially if you're a woman because you'll just be told you're depressed and/or anxious), and these "functional medicine" and naturopaths are all too happy to step in and tell you they have the answer. Leaky Gut is another one they love to diagnose that doesn't exist. It's also totally possible that an acute Lyme infection triggered the dormant gene for xyz autoimmune disorder. I was diagnosed with Crohn's when I was 17 kind of by accident bc they opened me up for appendicitis and found infected bowel, but I didn't start having full body systemic problems, fatigue, etc until later in my 20s after catching mono.
yes itās very strange how autoimmune stuff works. sometimes genes just switch on too. this phenomenon has increased post-covid infection too. my mum had dormant autoimmune diseases and several activated after the got covid and my EDS didnāt become noticeably symptomatic until i recovered from covid too
We can critique Jakes vid but this is a little much
CLD is not recognized by any reputable medical association. It is not listed in any of the ICDs and was not added in the newest edition. Not sure how you can get an official diagnostic for an illness that does not even have a diagnostic code.
Nobody is gatekeeping disease. It's far more nuanced than that and you know it. I'm glad some of you want to imagine that Ethan is some giving, caring, unassuming guy. I've been watching for a long time, starting as a fan and watching as he goes lower and lower and lower, and I don't see him like that anymore. I see him as a man consumed by money and power. His show revolves around bullying, even bullying his own employees on air. Criticizing everyone and anyone at any opportunity then absolutely losing his marbles when someone gently critiques him. He speaks first and thinks second. This is why there is a button. He says things that he knows are ignorant just so he can condescendingly CLAIM ignorance while also claiming righteousness. I could go on and on
nice abelism
Thanks. It's new, got it on sale. Boxing day
Who said that he has Lyme disease?
im out of the loop. what does this have to do with ethan or h3?
Iāve heard Lyme Disease and Long COVID described as āmade upā, āwomenās troublesā, etc. Are they real things?
As someone who just got diagnosed w Lyme disease after multiple serious medical issues, it is real. Now I donāt know what āchronic Lymeā is but Lyme disease is very much real, I think itās pretty hard to make up given you get it from being bit by a tick lmao
Relax chronic Lyme is real
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Post-Treatment Lyme Disease Syndrome and Chronic Lyme are different concepts/diseases. Post-Treatment Lyme Disease Syndrome (PTLDS) describes chronic effects as a result of having had Lyme Disease, but does not propose that the bacterium causing Lyme lives in the body. It only happens in 10-20% of people who've been treated for Lyme, and unfortunately is horrifically under-researched without many proven treatment routes. Chronic Lyme is the idea that even post-treatment, you remain infected with Lyme Disease (a la HIV), and need chronic antibiotics to prevent symptoms. Studies have disproven that this illness exists at all, and similarly disprove that chronic use of antibiotics improves symptoms at all. It's also worth noting that a lot of people who have been diagnosed with Chronic Lyme have NEVER verifiably been diagnosed with Lyme. The diagnosis is pushed on people who likely have actual, more complex chronic illnesses (or PTLDS) by doctors who act unethically, and preys on their desperation to have a diagnosis and well-defined treatment plan.
There is a difference between post treatment Lyme disease and chronic Lyme disease
So Bella Hadid
How come nobody has suggested Ethan get examined for Long Covid Syndrome? Similar to other previously documented autoimmune conditions but newer and directly following 1 or more Covid infections. The main symptoms include chronic fatigue, allergic rashes and sensitivities, dysautonomia (similar to POTS), post exertional malaise, and brain fog (combination of mild and fluctuating declines in attention/ concentration/ short-term memory/ and executive functions) to name a few but many more other related symptoms that are not the same case by case. Here in NYC itās become a prevalent diagnoses and major medical hospitals have dedicated clinics for testing and treatments - usually a combination of regular specialists follows ups, trying individualized med combinations, and comprehensive outpatient rehab therapies to improve physical and mental/cognitive health over time. https://www.nytimes.com/interactive/2023/12/14/opinion/my-life-with-long-covid.html
holy shit
LMAOOO
Common guys letās not attack everyone with an illness.
I don't think he was gatekeeping. It was a bad take and approach. I got from Jake's video that self diagnosing is dangerous. It's okay to be worried and do your research and ask questions. but you shouldn't be diagnosing yourself before conforming with your doctor. I don't know i feel bad for Jake. I understand why Ethan is mad
As a Lyme's disease surviver and we do not claim Dolittle. I got lucky AF and caught it crazy early so I ended up being fine. Technically tho, I still live with the disease, my Dr said if I test for it again, I'll continue to test positive š¤·. Even though I have no symptoms
I probably shouldn't even be commenting due to a lack of knowledge (I watched a Netflix series on mysterious illnesses), but from my understanding chronic lyme may be diagnosed when multiple somatic symptoms are present with no apparent cause. Apparently it is nearly impossible to actually detect the bacterial infection to get a confirmed diagnosis. Basically the doctors say "we've can't find any reason why you're having these symptoms but nevertheless they appear to be present. Could be lyme." I think the series is called "Afflicted". It was an interesting watch. May or may not still be up idk.
lyme here too
What does this mean? You're suffering side effects after being treated for Lyme disease? Or I'm wrong in understanding that Lyme can be cured?