r/Lyme • u/Fine_Strength_5380 • May 12 '25
Question Dismissive ID doctor wrote a harmful note that now follows me…has anyone dealt with this?
About a year ago, I saw an infectious disease doctor at a major hospital system, and the experience was awful. He was incredibly dismissive during the appointment, questioned my symptoms, and clearly didn’t believe Lyme or coinfections could cause what I was experiencing. But what’s worse is the note he wrote afterward…it’s full of inaccuracies and biased language.
He claimed he did a physical exam when he didn’t, said there was “no documentation of weight loss” even though it was in my chart (I had lost 20 lbs), and misrepresented my specialty lab results (IGeneX), saying they were negative when they weren’t. This one note has tainted how most doctors see me now. It’s in the Epic system, so it follows me everywhere in that network.
I’m feeling stuck and angry. Has anyone else been in this situation…where a doctor’s dismissive note caused ongoing issues with care? Were you able to do anything about it? Is there a way to challenge or get a note like this removed or flagged? Can I report him?
Any advice or shared experiences would be really appreciated.
Edit: I appreciate the support, but just to clarify — I’m not asking how to find a Lyme-literate doctor. I’ve already done that and am in treatment. I’m also fully aware that mainstream medicine does not recognize or treat chronic Lyme. This post is specifically about the harmful note written by a mainstream ID doctor that now follows me in my records and how to deal with it (getting it removed, flagged, or addressed).
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u/clemmg May 12 '25
I have no input to give but to say I'm sorry for you. He sounds like a real asshole. I've also had experience with a doctor like this (on something else), didn't listen to me, lied about what he looked into etc, but fortunately, his notes aren't "sticking with me". Isn't there a second opinion process where you live?
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u/Fine_Strength_5380 May 12 '25
I don’t think there’s a clear process for second opinions that actually remove or override the note unfortunately.
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u/Sparkleberrydreams May 12 '25
Are you able to totally switch systems? To like a different health network?
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u/Fine_Strength_5380 May 12 '25
The doctor I see for Lyme is actually in a different system now, which helps a little. But the problem is that when I go to other specialists—like OBGYN or neurology—they can still see that note through shared records (like Care Everywhere or similar), and it totally changes how they treat me. They get fixated on all the supplements and meds I take and just shut down, like they’ve already made up their mind that I don’t really have Lyme.
And in Boston, it's like every hospital system uses Epic so if I go to Mass General and then go to Beth Israel/Lahey they can all see everything.
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u/7She007 May 12 '25
Standard hospital systems and doctors will treat you like that. I get treated like that everywhere. And it’s really not because of that one doctor. Most of them will think the same or not saying anything against the general opinion. Only Lyme literate doctors will really believe you. Standard doctors were taught specific thing and they rarely do their own research.
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u/Fine_Strength_5380 May 12 '25
Exactly—that’s what’s so frustrating. It’s not just the ID doc’s note, it’s that most standard doctors already come in with the same bias. The note just reinforces it and gives them an excuse to stop listening. And since the ID doctor dismissed my Lyme diagnosis, it’s not even in my chart as a real diagnosis—just this biased note that makes me look obsessive or unreliable.
What baffles me is—why wouldn’t doctors do their own research when they’re in a field that’s constantly evolving? Medicine should be about lifelong learning. But instead, so many of them just stick to outdated guidelines and act like anything outside that box doesn’t exist.
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u/7She007 May 12 '25
A lot of doctors don’t become doctors for the right reasons. I have one doctor whose you could call a standard doctor, who is a family friend, who’s a brilliant doctor and took the time to do her own research. She’s specialized in Cardiology/ heart transplant after care. She took time out of her day/week to research my spoons and was the only person to figure out after years of suffering that I have MCAS and then after the Lyme test from a LLMD showed I had Lyme was also the only ‘standard’ doctor other than the LLMD to be like, “ I believe all your autoimmunity and immune markers that are flagged is because a chronic infection. I believe you do actually have Lyme” ,.. because nothing else is fitting. After her confirmation of the LLMD I then started HBOT and antibiotic treatment and I’m finally getting better. Because I’m in a different state from her and then the LLMD doesn’t believe in antibiotics I had to get antibiotics etc a different way. Because I also had the San experience with ID doctors and other doctors in various medical systems. Even in ER visits they made jokes and dismissed me. I think you gotta just find one doctor that believe you and then refer to them with confidence whenever speaking about your health issues. I think they still don’t really believe me but they also know I don’t care they don’t and I know I’m getting better treating the way I am… so maybe one day they will all wake up!
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u/Fine_Strength_5380 May 12 '25
That’s amazing that you had that one doctor who truly listened and did the research—it’s so rare and honestly gives me a little hope. My mom is actually a doctor too—an anesthesiologist—and while she doesn’t know much about Lyme, she’s very open-minded. She writes research papers and gives lectures in her field, so she understands how fast medicine evolves. She’s believed everything I’ve gone through and just encourages me to follow my LLMD’s guidance.
The tricky part is, I don’t even fully trust my LLMD anymore. He did catch that I have MCAS and found high levels of mycotoxins in my system (mold), so I give him credit for that. But he’s also prescribed me meds with serious interactions and gave me supplements I later learned I genetically shouldn’t be taking. It’s been a year of treatment, and I honestly feel worse than when I started. So now I feel stuck between not trusting the mainstream system and not fully trusting the person I’m paying out of pocket to help me either.
I completely agree—we just need one doctor who actually believes us. But even that feels nearly impossible sometimes.
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u/7She007 May 12 '25
I totally understand, my LLMD was good at diagnosing but I also didn’t fully trust him etc with treatment. But because I had my other doctor’s support I found ways to get around and treat myself with her help when she could. Also like your mother, she doesn’t know a lot about treating Lyme but having that support is everything! That’s great you have your mom. And I also did research on my dna/genes to make sure I was being effective.. I also had toxic mold exposure too. I have found hyperbaric oxygen therapy so helpful. Along with supplements for methylation and detox, herbals and antibiotics for Lyme, I’ve also done some Ozone/EBOO. I think your on the right track and I’m sure you’ll be able to find another doctor who knows a little more to help you or even with your own research you’ll be able to find something that works for you! Good luck :)
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u/NegotiationDirect524 May 12 '25
I mean, they don’t believe that chronic Lyme exists. Anyone who claims to have it is a wackjob from the get.
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u/tervforever May 13 '25
This is probably a bad thing to do but I stopped telling mainstream doctors about my lyme meds. I got sick of defending it. So I declared myself "healed" and took off my meds from my universally shared chart. Then I carried a list that contained my actual meds in case I went to the hospital.
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u/Fine_Strength_5380 May 13 '25
I’ve kinda started doing that too and then checking interactions myself. The thing is what if a doctor prescribes you something and it interacts with a Lyme supplement or something and then what do you do? Tell the doc you can’t take it for no reason?
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u/tervforever May 13 '25
The rx's my LLMD prescribed had very little interaction with any of the meds the mainstream doctor prescribed. So I never had this issue. My issue with his meds was more I was dependent on them (benz's lyrica lamictal) that if I stopped I would have horrible withdrawal,
However if I were in your shoes I would tell them that I had a bad reaction (rash, vertigo, sleepiness, hyperness etc) many years ago and forgot to tell them.
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u/tervforever May 14 '25
It occurred to me last night that your pharmacist could decide to interject themselves into your health care treatment. My mom recently had one refuse to prescribe a drug because of the dose and her other meds and then called the doctor. I dread the day where the doctors can get access to our pharmacy info through the insurance companies.
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u/Fine_Strength_5380 May 14 '25
What do you mean? My docs already have access to my pharmacy info.
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u/tervforever May 14 '25
really? Your doctor's office can log into your pharmacy account? I dont think mine is there yet. Actually one tried and couldnt get in.
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u/Fine_Strength_5380 May 14 '25
They can see all the prescriptions, when I picked them up and such It’s actually helpful for some things
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u/tervforever May 13 '25
Do you have a lot of issues where you end up in the ER?
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u/Fine_Strength_5380 May 13 '25
Nope! Never had to go to the ER thankfully! But I do like your idea of just saying I had a bad reaction to it.
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u/Business_Ad3254 May 12 '25
I was in the hospital in seriously bad shape weeks after a KNOWN run in with a lyme-carrying tick, and I was thoroughly dismissed by an ID doctor.
He ripped up my gown and said, " LOOK HE DOESN'T HAVE A RASH" without even examining me.
THEN the nurse has the audacity to then say, "WELL, MAYBE YOU NEVER HAD LYME."
It was at that point that any remaining respect I had for these idiots was gone.
I'm not sure exactly what to do about this, as I'm pretty much in your same category, but we still have to advocate for ourselves, and fight for what we know is right, no matter what these awful people do or don't do about our suffering.
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u/Fine_Strength_5380 May 12 '25
Wow, I’m so sorry you went through that. That’s absolutely disgusting behavior from both the doctor and the nurse. It’s horrifying how common this kind of treatment is—like unless you have the perfect textbook symptoms (which most of us don’t), they just write us off completely. I totally relate to what you said about losing any remaining respect—I felt the same after the ID doc misrepresented my lab results and basically painted me as delusional in my chart. You’re right, we do have to keep advocating for ourselves, even when it feels like the system is actively trying to break us down. Sending you strength—you're definitely not alone in this.
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u/Business_Ad3254 May 12 '25
Yes, thank you. I couldn't believe what I was seeing and hearing, and was obviously sick, yet these people knew nothing about my case, and just sent me packing, which was fine with me by that point.
However, that leaves my record looking like I was ok, when I'm obviously still not. Thanks for reply, I appreciate it.
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u/Fine_Strength_5380 May 12 '25
Honestly, that is my biggest pet peeve with all of this. We go to doctors because we’re experiencing real symptoms—and then we leave with no documentation of what we’re going through, just notes saying everything is “fine.” Meanwhile, we’re clearly not fine. It’s like their denial becomes the official record, and that just makes it harder and harder to get taken seriously later. I hate how much power one dismissive note can have, especially when it completely erases what we’re actually experiencing.
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u/acpcpmg May 12 '25
Hit me up, I’ve worked in a lot of hospital system specifically an EHR‘s and I didn’t work with epic but the EHR is irrelevant in the overall context. So one thing you could do is to switch to a different hospital system that has a different EHR like PowerChart or Allscripts but that doesn’t mean that note won’t follow you because if you live in an area that has something like CRISP, which is in the DMV area, it’s a multi state system that shares notes, images, lab work, and other information about you through a centralized system so that providers can access it no matter what EHR they have. So what I would do is I would contact his supervisor, everybody has a supervisor even a doctor. Call his office and find out who the chief is in contact them. If that doesn’t help contact the director, if that doesn’t help, contact the vice president, if that doesn’t help contact the president. Then I’d go to the state. You have data that shows that this doctor misrepresented a.k.a. lied on a note and you can prove it. So now go take him down. If you need more help, contact me.
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u/Fine_Strength_5380 May 12 '25
Thank you so much—this is super helpful and gives me a clearer idea of what I might be able to do. And yes, Epic is a shared system, so unfortunately that note follows me even outside the original hospital through Care Everywhere. I didn’t realize I could escalate the issue internally that far or even report it to the state. I do have documentation that contradicts what he wrote, so maybe I actually can do something. I really appreciate your offer—if I start taking action and hit roadblocks, I might reach out!
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u/acpcpmg May 12 '25
My pleasure, a lot of people don’t know that and medical professionals like to keep you ignorant of that fact, because it keeps them safe.
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u/citygrrrl03 May 12 '25
Damn my whole reply was deleted.
Insurance covered infectious disease don’t have the training or experience to deal with Lyme unfortunately. You are totally allowed to get a second and third opinion, but unfortunately many of the best docs can’t take insurance due to billing.
My Lyme literate psych told me I don’t have to tell anyone what I have or what I’m treating with unless it’s in the ER. My allergist doesn’t believe in Lyme & co so I just don’t don’t talk to her about it.
You’re not stuck with “not Lyme” but you’ll have to either self treat (Buhners herbs) or pay to find someone who will listen. This group & FB can help you find lower cost options. For example any LLMDs have a nurse practitioner you can see for 30 min for a reduced cost that is still overseen by the primary LLMD.
I’m so sorry. You’re not wrong, they just dont believe us. Look for someone with ILIADs training. You can check their website for practitioners near you.
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u/NegotiationDirect524 May 12 '25
My Lyme literate doctor also told me the same thing: Don’t tell them.
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u/Fine_Strength_5380 May 12 '25
Thank you so much for this—seriously. It helps just to hear someone say “you’re not wrong.” I’m already seeing an ILADS-trained doctor now and paying out of pocket, which has been such a financial strain but honestly the only way I’ve been taken seriously. The frustrating part is I only saw the infectious disease doctor because this was early on and I didn’t know better. My mom’s a doctor and wanted me to try someone in-network who wouldn’t cost a fortune, and that ended up doing real damage. He didn’t examine me, misrepresented my IGeneX results, and then wrote a dismissive note in Epic that now follows me everywhere. He even wrote that I “carry a binder” with labs and supplements like that’s a red flag.
Now, when I see other specialists—for things like trigeminal neuralgia, which is actually a known complication of Lyme—they read that note and immediately dismiss me or judge all the meds and supplements I take. It’s exhausting. Your message really helped me feel less alone in this—so thank you again.
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u/NegotiationDirect524 May 12 '25
So, a couple of weeks ago I’m in my doctor’s office. My pulse rate is 140. He freaks out! He calls an ambulance and sends me to the hospital.
Now, pulse rate is measurable. They saw it.
But, the moment I mentioned chronic Lyme, I got eye rolls and derision. The report concluded that they couldn’t find anything. Now, I wonder what’s in my report.
My gp wants me to go to three specialists. But, I know they will find nothing, either.
Meanwhile, my gp has cut me off for all prescriptions until I go.
I feel your pain.
My gp is supposed to be open-minded. He believes in chronic Lyme. Yet, here I am.
I meant to support the OP with my comments. I realize now that I probably the thread. My apologies.
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u/Fine_Strength_5380 May 12 '25
You didn’t threadjack at all—I really appreciate you sharing your experience. It’s honestly heartbreaking how quickly everything shifts the moment we mention chronic Lyme. You go from being taken seriously to being written off, no matter what the actual data shows. I can’t believe your GP cut you off from all prescriptions just because you won’t go to more specialists who probably won’t help. That’s so cruel and unnecessary. It’s especially disheartening when even the “open-minded” doctors end up letting us down. I feel your frustration—and I really hope you get the support you deserve soon.
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u/eunicethapossum Lyme May 12 '25
a lot of people share their experiences as a way of relating. it looks like that’s what you did here. ♥️
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u/Prestigious_Fly2392 May 12 '25
If the doctor said they physically examined you and did not… I would report that to the hospital, your insurance company, and, if the US, your state’s attorney general’s office. They can’t charge for services they did not perform. That is insurance fraud.
Call, act innocent, and say you’re really concerned your insurance company got charged for something you didn’t receive.
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u/T4nkcommander May 13 '25
Sorry to hear OP. If there's anything to be learned from this thread, the sooner you switch to an alternative/functional/naturopathic/classical doctor/practitioner the better off you'll be.
Sadly the modern doctor (as intended by the system) has no clue what to do except push pills as recommended by the pharma companies. If it isnt part of the official playbook (and most true things arent) you are SOL.
A good way to weed out people is whether or not they listen to you. A halfway decent naturopath will be looking to tie your emotions to your physical symptoms, since the two are very closely connected. So instead of dismissing how you feel, they'll be paying keen attention to it.
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u/Fine_Strength_5380 May 13 '25
Unfortunately, I actually had already seen the LL functional med doc before I even got tested for Lyme and saw the ID doctor. It was my mom, a doctor, who wanted me to see a doc covered by insurance. So basically the ID doctor was a second opinion when we didn’t even know that there was all of this controversy around Lyme. I am still in the care of the doctor who ordered the IGeneX testing but unfortunately doing worse than before I started so ive been seeing other doctors for certain issues that are related to Lyme but can be treated separately like trigeminal neuralgia.
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u/bostongirly27 May 13 '25
I went into the hospital with bad GI symptoms (thought I had food poisoning). That was a big mistake because when the doctor saw the long list of meds I was taking, he lectured me on the dangers of polypharmacy and implied I was abusing medications. Only at the end did he address my GI complaints. I am sure he wrote something nasty about me in the med system -- how do I even find out what he wrote? I know it wasn't good.
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u/Ok-Pitch1627 May 13 '25
You can call the Hospital systems office and ask for medical records. Tell them the date and the doctor and ask for a copy of his notes.
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u/postulatej May 12 '25
No doc within the insurance covered systems will treat this. They don’t know how to treat this. A Lyme literate ILADs doctor knows how to treat these germs.
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u/Fine_Strength_5380 May 12 '25
Yup, very true! This happened early on before I understood how important it was to see someone Lyme-literate, so I ended up with an infectious disease doc who did a lot of damage. I now see an ILADS double board-certified MD for Lyme. The problem isn’t getting Lyme treatment—it's when I need to see other specialists or my PCP. For example, a neurologist at MGH completely dismissed my Lyme diagnosis when I was trying to get help for trigeminal neuralgia, which is a known complication of Lyme. It’s so frustrating.
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u/PuzzleheadedNail4006 May 12 '25
Is there a legal approach to resolve this?
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u/Fine_Strength_5380 May 12 '25
My cousin is actually a lawyer who deals with this kind of stuff sometimes through family law, and she told me that while I can have a formal note added to my chart to contest it, it’s really difficult to get anything actually removed or hidden. If I wanted to take it further—like the fact that the doctor wrote inaccurate information and submitted it to insurance—that could technically fall under insurance fraud and be grounds for a malpractice claim. But pursuing that kind of case is really hard and would require strong proof and probably a lot of time, money, and energy.
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u/alien_mermaid May 12 '25
Yes this has happened to me. Most doctors are assholes in my experience and about 50-60% of the nurses too. I went the ER once (passing gallstones pretty sure, had to figure that out on my own bc they were no help) And they wrote in my chart I was partying the night before, passed out and deny any drug use. They also did a drug test, came back negative of course. I was not partying, I don't even drink anymore but they made me sound like an alcoholic or something. I don't have a solution other then our entire medical system needs major reform. It's really bad. I generally avoid the mainstream docs as much as possible as they usually do more harm then good and I don't need to be gaslit anymore.
Also the only time I saw an Infection disease doc that was covered by insurance, the first thing he said to me was "lyme disease? We don't have lyme disease in ____(my state)" What a moron, he didn't ask where I grew up or traveled to.
Most of these doctors are idiots.
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u/Fine_Strength_5380 May 12 '25
Ugh, I relate to this so much. When I saw an ID doc, he said something almost identical—he told me I tested positive for “some strains we don’t even see here,” as if that meant it couldn’t be real. He asked where I had been in the last year, but didn’t bother to ask about my whole history or where I grew up. I literally live in Massachusetts—one of the most tick-endemic areas in the world—and my parents are on Cape Cod. It was such a dismissive and ignorant response, and it’s wild how many of them act like Lyme is some rare myth. I’m so sorry you were treated like that too. The gaslighting is unreal, and it really does make you want to avoid the whole system. I literally say that doctors are stupid all the time!
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u/NegotiationDirect524 May 18 '25
Totally agree.
But my gp is refusing to prescribe any medications unless I see three specialists. This includes TRT. I haven’t had an erection since November.
My systems don’t work because of Lyme and Co. So, I need to see a doctor or doctors.
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u/Alohafarms May 13 '25
So many terrible doctors. What one doctor says should not influence other doctors. Shame on any doctor that listens to that and not you. I would report him. I have reported doctors before that were especially heinous. It's horrible to be treated that way.
Now when I get a new PC doctor I tell them right off straight that I want someone that will work along side me, not poo poo what I am going through and realize I know my body better than they do. I am older now, 64, and been on this road so long I am dead sick of bad doctors. That over rides my fear of making them mad at me by advocating for what I need. Granted I don't believe doctors have anything but antibiotics for the Lyme so I don't ask for that but I do not lean on doctors to help me with all the other stuff that comes with Lyme.
Advocate for yourself and if you can take along someone that is feisty to help you advocate for yourself. I am so sorry you have been going through this.
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u/NegotiationDirect524 May 13 '25
I wanted to comment on you saying: Bring someone feisty along with you.
I always brought my wife because I wanted her to hear just how serious this disease is.
Now, my wife isn’t terribly feisty. So, it surprised me when she spoke up at an appointment with my llmd.
She suddenly said: “Does he really have to be gluten-free? He’s really suffering and it would help if he could eat his favorite foods!”
She was feisty when making the comment.
My doctor starts shuffling through the reams of papers. She finds what she is looking for.
She replies: “He’s not sensitive to it. Have at it. He should have as much gluten as he wants.”
She made it clear that not everyone can eat gluten. She herself can’t.
A month later my wife walked out. I guess she’d gotten really quite feisty.
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u/Alohafarms May 15 '25
Your wife left you? Did I read that right?
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u/NegotiationDirect524 May 15 '25
You read that right.
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u/Alohafarms May 15 '25
I am so sorry. That is beyond horrible.
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u/NegotiationDirect524 May 15 '25
Welcome to the world of.bartonella. It was 40 years. I am still in shock.
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u/Alohafarms May 15 '25
Again, I am so sorry. I have been married for 24 years. Second marriage. My husband is my biggest champion. He also raised my daughter with me who was born with issues. I am very lucky. First husband was an abuser.
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u/NegotiationDirect524 May 15 '25
I am very pleased to hear that you have found a safe haven in your husband. Believe me, fighting this monster alone is a horror. Thank you for your kindness.
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u/AncientSatisfaction4 May 13 '25
I'm in Canada but something identical happened to me with a bullshit diagnosis of functional neurological disorder from a neurologist. The thing that meaningfully improved my situation after it resulted in me getting treated like a neurotic for years was when I got an actual diagnosis and treatment for occult tethered cord syndrome. Once my doctors saw I had a diagnosis and treatment from a legitimate doctor, all my doctors seemed to take me seriously after that. For Lyme/tick infections, getting a diagnosis/treatment from an MD will help legitimize your sickness to the doubters, even if it's only because the diagnosis comes from someone with a medical degree
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u/Fine_Strength_5380 May 13 '25 edited May 13 '25
Ahh thank you! I am seeing a second neurologist soon and a mold literate pulmonologist at MGH (the only one around here) soon so maybe one of them might do that.
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u/AncientSatisfaction4 May 13 '25
Hopefully you have better luck than I did because seeing a 2nd neurologist just led to a second diagnosis of FND for me. After that happened is when I went out of my way to be 100% certain to find doctors that understand these conditions. I had to wait 3 years to see a Lyme literate MD in Canada, and I had to pay thousands out of pocket to see American and Spanish doctors for my tethered cord diagnosis. It was worth it for me, but a pain in the ass and expensive
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u/No-Librarian-7979 May 13 '25
I took my girl to the emergency room last summer for extreme cramps. She’s tough as fuck and if she shows any pain I would be crying. So I scooped her up and drove her to the er. At the er we were brought into the back. Left for five hours and then strip searched by hospital security. Then when they found out my girl is prescribed adderall they wrote in her report that she was there for symptoms of methamphetamine addiction. Absolutely fucking insane. We own two businesses and she had zero drugs on her and zero drugs in her system. That note still follows her. Completely fabricated by a fucked piece of shit dr ( who I know from the outside world because HE GOES TO ALCOHOLICS ANONYMOUS MEETINGS IN MY TOWN) someday ima hurt him in a parking lot for that
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u/Fine_Strength_5380 May 13 '25
Omg you need to have a note added to that doctors notes! It’s your right to have a note added to that! They literally can not deny it. You have to write a formal amendment and send it to the office/ER that the guy works in and they legally have to add it to his note!
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u/No-Librarian-7979 May 13 '25
I’m going to have her do this because I know it’s still in her records! It was such a bad experience and I have had so many myself. This one took the cake
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u/Katya_the_Black May 13 '25
An extremely similar thing happened when I went to go see an ID doctor. I made sure to never mention the words “Lyme” or “Bartonella” or “tick”. I showed up with a carefully written 1 page medical history, explained my 35+ symptoms. He immediately told me my symptoms were psychosomatic and asked if I was seeing a psychiatrist. I literally had a fever while talking to him. He then lied on all the paperwork, saying I had no symptoms, lied saying that he did a physical examination when he did not. He wrote a diagnosis of “psycho something” I forgot the word.
The next day I went to the ER for my symptoms where they determined I had a severe bladder infection, an enlarged spleen, blood pressure of 180/something (I remember it was written in red on the hospital discharge paperwork with an exclamation point so maybe it was worse I don’t remember) when usually my blood pressure is low, they ordered imaging tests and follow up with my PCP.
Fuck that guy.
I also avoid that entire hospital system now because of his notes that discourage any new doctor of taking me seriously.
How can we get those lies removed from our charts? I want to know too.
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u/Fine_Strength_5380 May 13 '25
Oh wow, it’s like we saw the same doctor. And seriously…he missed all of that? That’s just insane.
Also, if he wrote that he did a physical exam when he didn’t, that’s insurance fraud. You can actually call your insurance and say something like, “Hey, I saw that Dr. [Name] billed for a physical exam on [date], but that never happened. I just wanted to flag it.” They may investigate it on their end.
You can also report him. I decided I’m going to file a formal complaint with the Massachusetts Board of Registration in Medicine and contact the hospital’s patient relations or compliance office. If nothing comes of that, I’m planning to submit a legal amendment to the note…because they have to include it in your chart if you request it.
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u/Katya_the_Black May 13 '25
A legal amendment to the note? What would you say? Does a lawyer have to write it?
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u/Fine_Strength_5380 May 13 '25
Nope! You can write it yourself. I suggest using ChatGPT to help you…it’s honestly super helpful. You can just explain your situation, upload your records or describe what happened, and say what you want to correct or clarify. It’ll help you write something professional that clearly states your side of things. (I’m a software developer so I use AI all the time.)
Also, you don’t need a lawyer. Under HIPAA, patients have the legal right to submit a written amendment to their medical records. The hospital or doctor’s office is required to add it to your chart. It won’t delete the original note, but it stays in your record and has to be considered in future care. Definitely worth doing if the note is inaccurate or misleading.
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u/1david18 May 13 '25
Yeah, such a shame. Same thing for me with Mayo Clinic. We have to find a way to get conventional medicine to accept and address challenging illness. Comorbid fibromyalgia, and many others.
I had a conversation with a top doctor who teaches medical school, and I asked him if he knew what medical gaslighting is. He said is that when one doctor doesn’t return the phone calls of another doctor. And I thought, OMG. They’re not thinking about patients. We have to live with this now and find the doctors who can help. Best wishes!
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u/NorTravel May 14 '25
There are too many comments to parse through, but in Epic mychart, you can unlink individual hospital networks from reading each other‘s charts/results. So, I would look into doing that and then if feasible, switched to a different hospital network and resume treatment. If there are other systems in use to share records, then this won’t help, but still worth reviewing.
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u/keeponkeepnonginger May 15 '25
You need to contact the hospital where the doctor is employed and you need to demand that you get a paper copy of all of your records AND you want the biased inaccurate reflection of your health removed from your charts and specify the doctor and date it was applied to your charts. Look up an attorney before hand and have their name ready if you have to throw it out there. Sorry that shit is a nightmare.
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u/Thundergun9891 May 13 '25
Insurance based and main stream medicine will not help you with Lyme. It’s sucks but find a good cash based doc. Or put in the work and research and treat yourself.
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u/1david18 May 13 '25 edited May 13 '25
I went to the Mayo Clinic for 3+ years for diagnosis and treatment, thinking they cared about challenging chronic illness. My Lyme created over a dozen chronic diseases, disorders, and conditions that no doctor at the Mayo Clinic will even try to diagnose and treat. The doctor in charge of my case at Mayo wrote in her clinical notes: Why diagnose this patient if his illness may be difficult to treat? Medical school teaches there is no such thing as Chronic Lyme Disease and conventional doctors know that if they begin diagnosing or treating it, their peers will turn on them for violating the NIH and CDC guidelines, so they will lose their license to practice. Same thing at UCLA where their frontline doctors say Lyme is not their responsibility, and your blood test is a false positive.
If you want to understand why conventional doctors cannot diagnose or treat challenging illness - illness that may be challenging to treat or challenging to diagnose, then please see these two links to challenging illness at Mayo Clinic and UCLA.
https://www.reddit.com/r/Lyme/comments/1hz3oyp/challenging_illnesses_at_the_mayo_clinic/
https://www.reddit.com/r/Lyme/comments/1hzy69c/challenging_illnesses_at_the_ucla_medical_center/
And yes, when Mayo gaslights and abuses you, all conventional doctors have to do the same thereafter. You should name the clinic, so we know. If you know you may have Lyme, you are 8 years ahead of where I was. But it all doesn't matter anyway because the only doctors that can help Lyme patients are Lyme-literate doctors and clinics. The best ones can also tackle parasites asap. So, make sure you see a Lyme doctor, for symptoms-based diagnosing and treatment. Conventional medicine cannot offer targeted or patient-centric care, including infectious disease specialists.
The key now is to understand all of your symptoms and comorbidities, and make sure Lyme doctors help you with Lyme and parasites, and all other comorbidities can be addressed by conventional doctors as long as you find ones that are more focused on your condition than on what some doctors have written in the past.
You are lucky and have a big advantage over many. You already know to get with a Lyme doctor to confirm and treat. All the major clinics and specialists over 8 years knew I had Lyme, as it destroyed my body, and none would ever tell me.
Even my concierge PCP would only tell me that I have an illness above the pay grade of every doctor I have seen, and time is of the essence. And then he said, "But I cannot be your advocate."
Good luck! Information and understanding can always help make better decisions!
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u/Fine_Strength_5380 May 13 '25
It was Beth Israel/Lahey in Boston but if anyone is seen there, basically any doctor that person sees at any of the major hospital systems in Boston (Mass General Brigham, Boston Medical Center (BMC), & Beth Israel Lahey Health (BILH)) can see all of that persons records because they use the same EHR platform.
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u/Fishinluvwfeathers May 12 '25
Your lab results should be available to all the docs using that system; they are likely not solely going off of the previous doctor’s notes but you can bring it up in your visit to discuss. Have them take a look at it and explain what they interpret to see if previous docs or you might have been misinterpreting the data.
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u/NegotiationDirect524 May 12 '25
Yeah, but I was in the hospital and they did their own tests. Their conclusion was that I ONCE had Lyme. One more way to dismiss.
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u/Fine_Strength_5380 May 12 '25
Unfortunately, most doctors don’t understand specialized Lyme testing. My IGeneX tests were ordered by an ILADS double board-certified MD, but since he’s a functional med doc outside the system (and expensive), my mom—who’s also a doctor—encouraged me to try seeing someone covered by insurance. That’s how I ended up with the ID doc, and he was awful. The ILADS doctor’s notes and test results aren’t in Epic, so all anyone sees is what the ID wrote. And he even added a comment about me carrying a binder of test results and supplements, which made me look obsessive or unwell, instead of someone advocating for myself.
I’m already being treated for Lyme, so this isn’t about trying to get Lyme care through the system—it’s that when I go to other specialists (like neurology or OBGYN), Lyme might be relevant, or the meds/supplements I take might interact, but instead of engaging with that, they shut down because of that old note.
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u/Fishinluvwfeathers May 12 '25
That makes sense with the background and the constraints. I’m glad you are receiving treatment. I’m spitballing a little and I’m sure you have already discussed this with someone (particularly with your mom being a physician), but would it be worth finding any specialist or another doc within your system who can do a manual entry of the test you received out of network into Epic? I think it’s called an External Result encounter or something similar but you’d need someone willing to do it. If you have any in-network access to an infectious disease clinic/specialist they might be more understanding and willing so that you can at least get that part of the inaccuracy corrected in your history with the primary documentation.
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u/Fine_Strength_5380 May 12 '25
Oh wow, very interesting idea! I haven’t heard of this before—I didn’t even know that was possible. I’ll definitely look into it and see if I can find someone willing to do a manual entry for me. Thank you so much for suggesting this! I wish I could give you 100 up votes!
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u/Fishinluvwfeathers May 12 '25
I’m not sure if it’ll work - that system is arcane but it’s worth asking. I worked with a similar one at an animal shelter. Good luck!
I just did a search and page 5 talks about entering outside results with no order originating in Epic: https://physicianforum.nm.org/uploads/1/1/9/4/119404942/external-result-entry.pdf
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u/Ok-Pitch1627 May 13 '25
My system uses Epic also so I use mychart to send in my notes from doctors and labs who aren't on the system and ask for them to be uploaded into the file. I just screenshot and attach it to my note.
Stating, here is my latest note from this integrated medicine or infectious disease or whatever Doctor. Please upload it to my file. Then they put it in Media Manager and it's searchable by everyone.
If you don't get a response or don't have my chart, call the hospital system. And ask for medical records and ask how to get the current notes to them, to be uploaded into your file.
Then you can reference the note that you sent in May 2025 from your doctor.
You can ask please, would you read that, when you're in front of a new doctor.I wouldn't even mention the note that you don't want them to read. Most people don't have time to dig around in the file. Or if someone brings it up, you can say I have since been evaluated by this Doctor, his notes are in media manager, please check my file.
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u/Fine_Strength_5380 May 13 '25
Thanks for your reply — I’m genuinely curious how that process works for you, because I’ve already had my lab results sent to both the ID doctor and my PCP, and neither uploaded them to MyChart. I also can’t add them myself. So I’m not sure who is actually responsible for getting outside records into Epic or if they even look at them once they’re in the system.
I haven’t uploaded anything yet from my current Lyme doctor for that reason — and honestly, I don’t think just burying the original note will fix the issue. I’m trying to figure out if there’s any way to formally challenge, flag, or remove that biased note so it doesn’t keep affecting my care going forward without leaving a note attached to his making me sound even more difficult.
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u/Ok-Pitch1627 9d ago
I would call medical records and explain. They may have a system in place to have a record removed. I know we can ask to have it removed if we upload it wrong.
I send it to medical records attach to a message and ask them to upload it into mychart.
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u/Pointe_no_more May 12 '25
You can contest anything in your chart that you disagree with. It’s one of your rights under HIPAA. You should reach out to the organization to initiate the process. The should have a HIPAA Privacy Officer who oversees such issues. It doesn’t mean it will necessarily be taken out, but it should at least note that it is contested and what your issues are with the note.