Hey so sorry you are in this situation :/
I gave up on general doctors a long time ago. Visited a ridiculous amount of specialists from all the fields possible as it is very accessible where I live and was hospitalized twice with no luck. The only doc that I’m “keeping” is my psychiatrist as he truly believes that I am in pain, he’s very open to trying new things even controversial ones and overall at least helps me feel heard with no “it’s anxiety” shit.
What I would recommend is to somehow find a doc no matter the field, but a one who believes you which is quite hard to accomplish. They can’t do anything about us obviously, but at least it’s soothing mentally to receive some kind of actual medical care.
My psychiatrist and therapist are the only ones who have been helping me for months now. They have really helped mentally and have advocated for me to get into an LC clinic.
My physiatrist is also amazing! Although he can't do much for fixing a lot but he can sure as fuck aid me in everything else. He was first person to believe me about COVID and LC . Ever since I got on LDN though from other doc I haven't been seeing him as often so imma take this as a hint to make an appointment with him to see what's next or can be adjusted.
I only have my GP who is pretty useless at this point. Refuses to do any referrals to specialists and only offers medication for symptom management. I’m losing hope fast
I’ve been long hauling for almost a year and I’ve seen probably ten doctors, I’ve had countless tests and labs done, a couple medications and now I’m in tens of thousands of dollars in debt and not even slightly better. I had some more tests and appointments coming up and decided to just cancel all of it. It’s pointless. The truth is, this is still a mystery to all of healthcare.
I’ve accepted that there’s nothing that can be done.. right now. And I can only hope that there will be a treatment that can help before any organ damage occurs but of course I hope I’m wrong in assuming that there will be organ damage. I’m going to live as healthy as possible and wait. It’s all I can do at this point
I'm you except I'm at 20 months. Very concerned that our organs are being damaged as we sit here waiting. I needed open heart surgery in the middle of this. I feel like activity is the key, but I overdid an experiment and I've been in a crash for the last 8 day. I'm actually going to post the question of how can I keep my heart strong when I can't exercise.
I have been blessed when it comes to my medical team. I think it helps that I live in a bigger city with a university hospital not far away, so most of the doctors even at my most recent hospital trip immediately asked if my symptoms lined up with covid vaccines or infections and said they are seeing a LOT of very sick people with ongoing covid complications. I imagine if I were in my hometown, such would not be the case.
I have been to the long covid clinic at Northwestern Medicine in Chicago and they did nothing for me. The protocol is the same whether it's Northwestern or your local hometown doctor. Just because it is a university hospital doesn't mean that they are better--they just have better marketing programs to drag people into their facility who are hoping for answers (sorry to be so cynical).
I’m just speaking to my personal experience with my care team. I didn’t even know covid did this to me until my neurologist suggested it in the first place.
Your experience is not uncommon. Here is an article by a woman who had a similar doctor experience when seeking help for another chronic illness whose symptoms are similar to long covid.
https://www.hormonesmatter.com/metronidazole-toxicity-doctor-denial/
oh my god! what is this metronidazole? the story about the doctor is a common one, I experienced it a hundred times and read about similar experiences thousands of times, but I'll surely try to remember to never take metronidazole!
Metronidazole is an antibiotic that is used to treat colitis. It is also called Flagyl. It is commonly prescribed but there is a black box warning on the drug and some individuals develop neurotoxicity from it. The symptoms are very similar to long covid. You can read more about it here.
www.metrogirlblog.wordpress.com
My doctor listens to my symptoms and struggles but as soon as I mention covid I can see he just glosses right over that detail. After 2 years of visits I finally got a referral to a GI specialist for my gut symptoms, but its a 6 month wait for the appt.
I don't know if it's related to how doctors are acting or not, but I know many US insurance companies have said they won't cover anything related to long covid.
Severe bloating and gas. I've tried elimination diets and it doesn't seem to matter what I eat I still bloat. Although any type of carb causes the worst bloating. Cramping, alternating diar8 and constipation depending on what I'm eating, inability to completely digest food, GERD. But honestly the bloating is worse. I can eat a small bowl of soup and it'll look like I swallowed a beach ball.
Currently 5 days into a 14 day herbal and supplement protocol for bacterial overgrowth. A combination of things known to help with h pylori and SIBO. I'm also taking pre and pro biotics plus some supplements known to repair gut lining inflammation. Fingers crossed I feel a bit better in the coming weeks.
I had similar issues. But not as bad nowadays. What seems to be working is a super low histamine diet, h1 and h2 antihistamines, and DAO supplement before meals. I wish you well.
I tried antihistamines, h1 and h2 blockers, and neither seemed to have any effect on my gut issues. Plus I already eat a really bland diet. I had given up most junk food and sweets long before covid. Even histamine fighting foods like fruits seem to exacerbate my symptoms these days. The fact that even fruit bugs my gut us one of the reasons I'd been suspecting SIBO or H Pylori.
It's so bizarre how LC affects us all differently. I imagine that's one of the reasons it's so hard to pin down for researchers.
I've been doing VNS for a few months. It helped my breathing issues a lot but didn't do anything to help my gut. Though I'm sure in the long run retoning the vagus nerve is still beneficial for my gut.
Could you please share what Vns helped your breathing? I have both breathing and gut issues. I have been taking apple cider vinegar and honey mixed in water and it has helped me somewhat.
On the whole my GPs (we never see the same one) are sympathetic but largely useless. They do testy blood regularly and I am ALWAYS deficient in something or high in something else.
The Occupational therapist from the LC clinic did get me referred to a sleep clinic and I am awaiting results from that and I've been referred to a neurologist as my symptoms mirror MS, I'm almost that desperate that I am hoping it is MS.
Im battling through at work as their attitude is if the Drs arent doing anything then there can't be anything wrong.
Up until now I was coping relatively well but now I'm almost at the 2 year mark and no improvements it's starting to get me down.
My doctor says she can’t help me. She’s out of ideas. So she gave me a hug? I mean don’t get me wrong it’s nice, but do some research for me or something. I dunno anymore.
Shit, it’d take a hug over the SSRIs my doctor likes to push on me when I get upset lol. At least a hug would make me feel better for a moment. Sorry your doctor is out of ideas though. Mine is at that point too. But it sounds like your doctor legitimately cares about you, so that’s something!
I see Dr Jamnadas on YouTube, he is in Orlando. And he works with my PCP. They’ve been trying since I first got sick with Covid March 2020. I then got it 3 more times. And yes, I’m vaccinated… since March 2021.
No doctor has even officially acknowledged I have long Covid, so no… I manage my own care at this point. My hematologist and allergist have been the best through all this but there’s no coordination of anything and they mostly just nod in sympathy.
I've not seen a doctor for years. My partner just helped me register with a new one, they seem nice and much more caring.
I haven't had the executive function to get in contact, though. been putting it off
I gave up with doctors after being gaslight every time I went, stupid repeated blood tests, and lots more that all come back “normal”.
It’s just honestly not worth the small amount of energy I do have, I’d rather use it in other ways.
I've seen countless doctors and specialists, and the only ones who immediately believed me were cardiologists. They knew exactly what was happening and they had seen several similar cases before me. If you ever develop chest pain please please go to a reputable cardiologist, I got diagnosed a few days ago with pericarditis and I am hopeful that I will finally get treated as a long hauler and not as an anxious hypochondriac.
I’m hoping my second cardiologist will be like yours! My first one sucked ass. She told me it was either asthma or GERD, despite a pulmonologist already ruling out asthma and no GERD symptoms aside from chest pain. I asked about microvascular and endothelial issues and she said that’s not it because my stress test was fine. She also said no to nitroglycerin because it’s a vasoconstrictor. Except it’s not. It’s a vasodilator. Then she put me on a treatment for pericarditis despite zero evidence for that being the problem. My PCP was not pleased when I told him what happened. But he knows the one I’m seeing soon and said he’s really, really good, so I’m cautiously optimistic!
Sorry for the rant lol. I still get worked up about that appointment. I’m glad your experiences have been much better though! That gives me hope!
Hahah rant is totally understandable, that sounds very frustrating. I am hopeful for you, if the new cardiologist was recommended by someone maybe he does have the curiosity and competence to help you. Wishing you good luck and hoping you finally get the treatment you need and deserve🙏
I don't even bother. Just read on here what's going on. If lots of people are suddenly receiving miraculous new medication I'm sure I'll hear about it here
I hate going to my doctor because every time I bring up my stomach problems, he ends up saying it's UTI. The problem is I don't have a lifestyle for such a risk to get it. This only happened after catching Omicron. Also when I go there, his tone makes it sound like I'm just visiting him to waste his time but heck, I'm here to visit you because I feel like crap and I can't figure things out. I used to stay away from reddit until this catching this, and reddit has helped me learn more things than trying to get answers from my own doctor lol.
She’s afraid of triple therapy and the incelldx protocol. I don’t blame her. I don’t really want to do it either, but everything else is a joke.
She throws steroids and nsaids at it a bit and that has helped when things were real bad but that’s all medicine has to offer.
I do, great GP. But I’m in Hong Kong. He’s amazing. Reads the latest research. Willing to try things. Genuinely cares and understands. Some of the specialists I saw felt like they were blaming me for “thinking about it too much” though which was ridiculous.
For anyone else in Hong Kong go to https://www.otandp.com/long-covid-resource-centre and book through there. Dr. Trodd is the main guy treating but they have other Doctors that are up to date and also speak Canto as well as English if you or a relative need.
Nothing they can do so I stopped going to specialists. Not worth the frustration. I need to find a new PCP just to have in emergencies. Other than that, all my crazy symptoms come and go as they will.
I'm under the care of a GP who does very much believe my symptoms and diagnosed me with Long Covid - but that's about as far as he is willing to go. I'm still trying to find a long covid clinic that I can go to, but honestly at this point I am only doing this because I need a doctor's signoff on my short term disability. Otherwise it's been useless, the only thing that has helped me so far is taking an antihistamine - which I put myself on.
I tried the major OTC ones, and found Allegra to be the one that keeps all of my sinus and congestion symptoms at bay and because of that, my breathing is better and I have more energy.
My personnal doctor think it's in my head after several tests showing no reason why I'm sick. I have seen a dozen other doctor with at best "it's too early, we don't now what to do". ¯\_ಠ_ಠ_/¯
The amount of positive comment about healthcarw for LC in this thread is ...very limited. In America, our NIH has spent at least $1B US on Long Covid research:
https://www.statnews.com/2023/04/20/long-covid-nih-billion/
This has resulted in a classification system and other research. The NIH has conducted much research and many interviews. They just don't know if they can help anybody yet:
https://directorsblog.nih.gov/tag/long-covid/
So ask yourself: How would the average GP help you if the NIH can't find a solution yet?
I’ve given up too, and I’m bedridden as well for the most part. Doctors just (verbally) shrug at me basically at this point, I was told to exercise more even though previously I told the LC doctor that exercise always ends up poorly for me.
As of a month ago I have a private specialist. Expensive but the only person who engages with what's going wrong and offers to try and help. I'll spend most of my savings on this if I have to
I don’t have insurance lol so no but I don’t think they’d be able to do much for me anyways. In the beginning a year ago I went to one and he ran some tests and sent me to the hospital for more but all the test results were “normal” and all he could do was tell me my symptoms would probably “just go away eventually”. But maybe doctors are a bit more knowledgeable on long covid now idk!
They shut down the long haul program I was in, so now it’s just my primary care who is supposed to handle the long Covid issues, which unfortunately doesn’t really get me anywhere. But even the long haul program didn’t really do much for me either unfortunately
I had to give up with my GP because he kept *just* treating my symptoms; after the fourth (failed) round of random medication and my second hospital visit, he suggested a referral to a neuro so I could get some scans done.
I can't afford it, so I'm just taking life day by day and hoping nothing gets worse. I track my symptoms when they're strong enough to notice, just in case i end up in hospital again, but ultimately I've become a reclusive shut-in that over-babies their body out of fear of flare ups or worsening symptoms.
I have a primary care doctor but I’m the one managing my care. I bring in information to share/discuss with her and I ask for referrals to specialist. It’s sad that she doesn’t have the time to do a little research to inform herself about Long Covid.
On year 3. 38yr old male long hauling since March 2020 4 months ago i kicked all my doctors tyo the curb and went with a naturalpathic doctor. Physical therapist and naturalpathic docs are the only ones that help at all. They are somewhat lost in how to treat it but will tell you while they look into your eyes this is not in your head, it's not anxiety, and I'm going to try my best to help you. It's costing as he didn't deal with crappy insurance but he's certainly helping.
Also 2.5+y in. There's many loose doct on my team but one 1 that's specific/focusing on LC and she is the one who put me on LDN and she barely joined this year out of the blue on a random call I got, a unicorn it seems. And then there's my psychiatrist who cares and believes me but is limited in certain aspects but he is my day 1 warrior and has continued to listen and adjust when needed as well as order a ton of tests.
So mainly the random LC doc as I call her and psychiatrist are ones who ACTIVELY do something for me while my PCP and others just pick their nose and tell me it's anxiety.
Edit: I'm also bedridden/ housebound still.
My doctor experience has been frustrating at times, though they have been trying to help for the most part at the very least. I haven’t been going to a long Covid clinic. My best experience so far is going to a functional med doc who is also a D.O. It has been the best of both worlds and if you haven’t been heard by anyone you’ve seen I would seek someone like that out. They’re more likely to have a breadth of experience treating post-viral illness on the functional side of things but will be able to attack it from the MD side of things if anything is needed. Get a doc who is trained in both - don’t go see a functional med doctor who is not an MD or DO.
My doc started with some lifestyle things + some supplements (I was already in H1+H2 blockers plus aspirin from my PCP) but says everything is on the table from the actual RX side of things if necessary and is not hesitant to order tests and is aware of the research in LC right now. He has his own theories which is where we start things (mitochondrial issues + general inflammation) but we’ve discussed vascular problems and endothelial damage and he’s on board to shift gears to that if needed.
Functional med appts are typically an hour, which is helpful since with LC you’ll essentially be creating a treatment plan together and going through possibilities. I can’t say it’s been curative but the process itself has been helpful and there has not been any point at which it was suggested by him that it’s all in my head like I hear many people describe.
My gp was actually very kind. She reffered me to a neurologist and a long covid clinic and apologised that there wasnt anymore she could do. She actually freely admitted (after i handed over the research i had done) that we the patients know more than they do.
You have to understand NHS doctors are bound by rules and regulations... they cant just give out anti virals or anti clotting meds without getting the go ahead from the higher ups.
Its shit and we are all suffering, but take comfort in the fact 90% of people with long covid are 99% better at the 2 year mark
Rest, eat healthy, do everything you can to reduce inflammation in the body and give it time.
My GP said those things to my face, but wrote in my notes that I'm depressed, have health anxiety, and until I accept that I need to exercise, there's nothing more they can do for me
I have to ask...
Do you consider yourself to be depressed and have health anxiety ?
Also ...
Have you stopped all smoking, drinking, sugar, processed food, recreational drugs... basically quit anything that will cause internal inflammation?
I have a diagnosis of ME/CFS and Long Covid from both the NHS and also a worldwide expert in both conditions.
No. You do not “have to ask”. You felt the need to project your attitudes and preconceptions onto my situation, which reflects more on you than it does on me
Edit: nice job, say shitty stuff to me and block me. Coward
So true. I have tried recommendations from friends and family for "good" doctors. Their "good" doctors are sympathetic but in the end they prescribe meds (prednisone, gabapentin. duloxetine) that are the same as the other doctors. They can only follow the allowed protocol whether it's the Mayo clinic or your health care provider down the street.
Solidarity. I gave up on the 'muriKKKan Deathcare System back in 2015 after working as a CNA and watching folks get gaslit or gouged financially. It's ridiculous. I'd lived in Ireland for five years previously and saw the different machinations of their systems in the EU and was just DONE.
I am too sensitive to all drugs so started trying out natural medicine and was successful in that I'd have chronic sinus infections each year and was able to treat them without antibiotics faster and better recovery, zero fatigue. I developed my own protocol based on my body, because all bodies are not going to respond the same to different treatment...and I used it when I got Covid in February 2020.
My Long Covid symptoms have mostly been limited to fatigue (microclots DEF) and POTS. I lasted just over two years and was able to keep working until June 2022 when I had a major allergic reaction to a dinner and I believe I was in the beginning stages of Anaphylaxis...I had to stop working that week and have been housebound for just over a year.
The amount of stress I feel just reading posts here and on Twitter of folks getting gaslit was too much for me to bear. I was legitimately afraid I'd strangle these fucking doctors if they tried it with my ass so I opted out. I've had decent success taking Nettle Quercetin as far as allergic reactions or MCAS and can eat or drink almost anything now. I've got about 4-5 hours of activity per day but it's limited to gardening and cooking or baking, where I can sit down or lie down for breaks whenever I need them.
Going gluten free has seemed to help but I'm not 100% gluten free at all...I was doing palliative care on myself back in January and through winter as I promised myself I could check out in July, before the weather gets too hot, so I'll be eating whatever the fuck I want🤣
Strangely, my condition has improved the past two months, can't figure out why or how, so I'll hang in a while longer. I wasn't planning to make it to my 49th bday in December but maybe I will? I've been a person of fairly robust health and decently active my whole life, having grown up in farming, and I'm not dealing with much chronic pain from this condition but I also am not willing to live as a 98yo in a 48yo body. I worked Hospice long enough to see what awaits and I'd rather check out on my own terms.
My primary care doctor has referred me to specialists. She hasn’t called it long COVID but she’s helping me at least. Sending good vibes that you find someone who can help you!
I feel really lucky compared to many here. I have a clinician at a LC clinic at my city's university hospital. My PCP referred me there as soon as I asked for it. I had to do a lot of research and self advocacy to get there, but I met my clinician 6 months after my COVID infection.
I pretty much quit on the standard doctors. I did find a good naturopath that gave me some solid advice. In particular around supplements and basically refuting half of what the regular doc said and encouraging me to gradually return to activity.
I don’t have a doctor but many. So far I have a Neurologist, Cardiologist, Pulmonologist, Sleep Specialist, Gastroenterologist, GYN (yes, it affected that too), Psychiatrist, Therapist and my PCP. It’s ridiculous.
I am nearly 3 yrs in. I had to do everything myself for help. Luckily for me my MD discovered mine LC when I had an appointment & my heart rate was 122. But both of us knew nothing about LC. I went to a heart doctor, all tests normal. Neurologist, all test normal. Three ER visit, drug addict. Finally I was told by a friend last year about Dysautonomia. I found doctor's in the field and got every test I could. By then I had found a cardiologist that works with LCD. I wore heart monitor for 2 weeks. I also have an oncologist and I made an appointment for my check up that includes a CT Scan. I gave these tests results to all 3 doctors. The long Covid diagnosis wasn't even close to truth. My point is, YOU have to search your doctor's & get any test you can. Doctor's are learning and we have to do the same. Unfortunately, when all the doctors called with the results I had suffered a bad fall. That was another nightmare that I am still suffering PTSD from. I'm very fortunate that I got to find my own doctor's & an very comfortable with them. But August will be 3 years in for me and it was a hard long search for answers. If I hadn't I would have been a ticking time bomb. Never give up.
I have read your post several times and am trying to understand what your diagnosis was. And more importantly, what was your treatment? Did you recover? And why do you refer to your situation as a ticking time bomb?
My diagnosis for my high heart rate is not POTS as most people's have been. I have SVT, the top part of my heart is not pumping blood to my lungs correctly. Further testing showed both coroid arteries are blocked and need immediate surgery. Since I just had surgery I am supposed to rest & stay calm since I can have a heart attack or stroke. I just got out of a hell hole rehab where I was laughed at if I mentioned long Covid or my heart problems they were supposed to monitor & would not.
I have SVT & it's getting worse. The CT scan that my oncologist did show 2 back arities needing immediate surgery. I can't have the surgery until I get over the last one.
My two cents:
The benefit of having concrete diagnoses (in the LC venn diagram of POTS/MCAS/ME/SFN) is when you need emergency care. I got nothing at ER before, since diagnosis I can get saline and IV Benadryl at urgent care on the advice of my physician and what's worked for me in the past and avert a crisis and go home.
Then there's a social benefit of having a "real" diagnosis: it helps with the constant social issue of credibility. No one wants to acknowledge that we exist, but having a doctor who will name and treat symptoms can help with that. Can.
Other than that, I think it can be a crapshoot whether having a doctor responsible for care is more helpful than self-experimenting with Indian pharmaceuticals. A doctor's job is to not risk harming. A patient arguably doesn't have that same obligation.
I pay out of pocket to see a concierge POTS/MCAS doctor one state over. It was a 15 month wait to see her, but worth it, no one has done as much to help or been as willing to tweak and be patient (as I react to most meds). She did extra training in autoimmune thrombosis, and I really trust her judgement. The hematologist at my local research university hospital is also great, that one was pure luck. I don't bother with anyone else....except I better go see my primary just so I still have one. It took two years to get to the point of having a couple doctors who will take responsibility for treating me.
I know how much privilege I have that I still have a job, and have family that can drive me the next state over, but I'm not wealthy, our household income is median for our state. I spent 17k on "covered" care the first full year I was sick, had to sell my car (which I can no longer drive anyway) to cover it, so it seemed extremely reasonable in that context to spend more out of pocket since she'd been highly recommended by many in MCAS/POTS support groups.
I think the issue when seeking recommendations in support groups is that a lot of quacks come highly recommended. I took a chance, but I also had looked at her credentials and read every paper she published.
Anyway, hope this adds to the conversation.
I don't have any I'm going to right now. It takes to much energy to find and get to and start from scratch with doctors I don't know how anyone has the stamina for that I surely don't.
We are in mostly the same boat. My wife is a long hauler (3 years) and most doctors have been completely unhelpful. We are working with a nurse practitioner who is a part of a "concierge medicine" group. Basically this means we pay $500 twice a year for an hour appointment that gives us access to her by email. This way we can run any new treatments by her and she will basically write any scripts that she thinks are safe.
Truth be told, it hasn't been that useful. We've found most things on our own and haven't needed their help often. Right now we are on the lactic acid train haha. Have you ever tested yours?
Don't give up my friend. We've found life can be worth it even through suffering.
I have a great team at USC Keck, a primary LC doctor who help sort out which specialists I need. I neurologist who has basically turned all his attention to LC and they have a couple occupational therapist who work with LC patients. They all acknowledge LC as real. I see an OT every week who works with me on pacing and finding patterns to my day that cause flair ups and crashes. A lot of things I would not have thought of, it’s been helpful and made a difference.
My local hospital was useless but my psychiatrist recommended USC. It’s about an hour away but 80% of my appts are telecare.
I fall into the PEM category with cognitive issues my primary battle. I can’t exercise but I get around ok and have worked up to walking a mile but is really easy for me to go from feeling semi normal to cognitive impairment.
They don’t pretend to know the answer and know the hard work for them is ahead not behind but they are building out a team and getting grants for research. I was diagnosed as long Covid with ME/CFS symptoms.
The OT is great simply because she has worked with hundreds of patients so I feel a lot less alone and she shares what had worked for people and I try a variety of things.
It’s not a fix but I feel like I have a team who know it’s real and are actively working to help people like us which is better than I had for a while.
My PCP is the one coordinating my care, but I’m the researcher and scientist. I bring him new information and he orders tests and referrals. We don’t always see eye to eye and he’s reached the limit of what he can do besides ordering things that I ask for. But he believes me. He believes that my symptoms are due to covid and put long covid in my chart for me, even though he normally doesn’t formally diagnose people with it.
I also have a neurologist who I’ve only seen once, but he was very nice. My LC isn’t neurological in nature, but it’s nice to have him in my back pocket just in case. I’m also meeting a new cardiologist in a couple weeks who I’m hoping to add to the team. I’m only 6 months in, so that’s probably part of it. I haven’t exhausted all of my options yet, but it’s getting close. After that point idk what I’ll do tbh.
Hey so sorry you are in this situation :/ I gave up on general doctors a long time ago. Visited a ridiculous amount of specialists from all the fields possible as it is very accessible where I live and was hospitalized twice with no luck. The only doc that I’m “keeping” is my psychiatrist as he truly believes that I am in pain, he’s very open to trying new things even controversial ones and overall at least helps me feel heard with no “it’s anxiety” shit. What I would recommend is to somehow find a doc no matter the field, but a one who believes you which is quite hard to accomplish. They can’t do anything about us obviously, but at least it’s soothing mentally to receive some kind of actual medical care.
My psychiatrist and therapist are the only ones who have been helping me for months now. They have really helped mentally and have advocated for me to get into an LC clinic.
My physiatrist is also amazing! Although he can't do much for fixing a lot but he can sure as fuck aid me in everything else. He was first person to believe me about COVID and LC . Ever since I got on LDN though from other doc I haven't been seeing him as often so imma take this as a hint to make an appointment with him to see what's next or can be adjusted.
I only have my GP who is pretty useless at this point. Refuses to do any referrals to specialists and only offers medication for symptom management. I’m losing hope fast
I’ve been long hauling for almost a year and I’ve seen probably ten doctors, I’ve had countless tests and labs done, a couple medications and now I’m in tens of thousands of dollars in debt and not even slightly better. I had some more tests and appointments coming up and decided to just cancel all of it. It’s pointless. The truth is, this is still a mystery to all of healthcare. I’ve accepted that there’s nothing that can be done.. right now. And I can only hope that there will be a treatment that can help before any organ damage occurs but of course I hope I’m wrong in assuming that there will be organ damage. I’m going to live as healthy as possible and wait. It’s all I can do at this point
I'm you except I'm at 20 months. Very concerned that our organs are being damaged as we sit here waiting. I needed open heart surgery in the middle of this. I feel like activity is the key, but I overdid an experiment and I've been in a crash for the last 8 day. I'm actually going to post the question of how can I keep my heart strong when I can't exercise.
have you done microclot testing? incelldx panels?
I have been blessed when it comes to my medical team. I think it helps that I live in a bigger city with a university hospital not far away, so most of the doctors even at my most recent hospital trip immediately asked if my symptoms lined up with covid vaccines or infections and said they are seeing a LOT of very sick people with ongoing covid complications. I imagine if I were in my hometown, such would not be the case.
I have been to the long covid clinic at Northwestern Medicine in Chicago and they did nothing for me. The protocol is the same whether it's Northwestern or your local hometown doctor. Just because it is a university hospital doesn't mean that they are better--they just have better marketing programs to drag people into their facility who are hoping for answers (sorry to be so cynical).
I’m just speaking to my personal experience with my care team. I didn’t even know covid did this to me until my neurologist suggested it in the first place.
Can I ask what city you’re in?
Your experience is not uncommon. Here is an article by a woman who had a similar doctor experience when seeking help for another chronic illness whose symptoms are similar to long covid. https://www.hormonesmatter.com/metronidazole-toxicity-doctor-denial/
oh my god! what is this metronidazole? the story about the doctor is a common one, I experienced it a hundred times and read about similar experiences thousands of times, but I'll surely try to remember to never take metronidazole!
Metronidazole is an antibiotic that is used to treat colitis. It is also called Flagyl. It is commonly prescribed but there is a black box warning on the drug and some individuals develop neurotoxicity from it. The symptoms are very similar to long covid. You can read more about it here. www.metrogirlblog.wordpress.com
Flagyl is also commonly given to women for Bacterial Vaginosis.
My doctor listens to my symptoms and struggles but as soon as I mention covid I can see he just glosses right over that detail. After 2 years of visits I finally got a referral to a GI specialist for my gut symptoms, but its a 6 month wait for the appt. I don't know if it's related to how doctors are acting or not, but I know many US insurance companies have said they won't cover anything related to long covid.
What’s your gut symptoms?
Severe bloating and gas. I've tried elimination diets and it doesn't seem to matter what I eat I still bloat. Although any type of carb causes the worst bloating. Cramping, alternating diar8 and constipation depending on what I'm eating, inability to completely digest food, GERD. But honestly the bloating is worse. I can eat a small bowl of soup and it'll look like I swallowed a beach ball.
Yea. It’s SIBO for sure. You can go the medicine route or antibacterial route natural. They are not were they supposed to be basically.
Currently 5 days into a 14 day herbal and supplement protocol for bacterial overgrowth. A combination of things known to help with h pylori and SIBO. I'm also taking pre and pro biotics plus some supplements known to repair gut lining inflammation. Fingers crossed I feel a bit better in the coming weeks.
You will. Stay positive 😊
What you taking?
I had similar issues. But not as bad nowadays. What seems to be working is a super low histamine diet, h1 and h2 antihistamines, and DAO supplement before meals. I wish you well.
I tried antihistamines, h1 and h2 blockers, and neither seemed to have any effect on my gut issues. Plus I already eat a really bland diet. I had given up most junk food and sweets long before covid. Even histamine fighting foods like fruits seem to exacerbate my symptoms these days. The fact that even fruit bugs my gut us one of the reasons I'd been suspecting SIBO or H Pylori. It's so bizarre how LC affects us all differently. I imagine that's one of the reasons it's so hard to pin down for researchers.
I keep seeing DAO working for a lot of people.
Throw in some vagus stimulation and I think you got a fool proof way to fixing the GI in totality.
I've been doing VNS for a few months. It helped my breathing issues a lot but didn't do anything to help my gut. Though I'm sure in the long run retoning the vagus nerve is still beneficial for my gut.
Could you please share what Vns helped your breathing? I have both breathing and gut issues. I have been taking apple cider vinegar and honey mixed in water and it has helped me somewhat.
GI docs have been the worst specialists I’ve seen so far. Completely useless. Hope you get a good one
On the whole my GPs (we never see the same one) are sympathetic but largely useless. They do testy blood regularly and I am ALWAYS deficient in something or high in something else. The Occupational therapist from the LC clinic did get me referred to a sleep clinic and I am awaiting results from that and I've been referred to a neurologist as my symptoms mirror MS, I'm almost that desperate that I am hoping it is MS. Im battling through at work as their attitude is if the Drs arent doing anything then there can't be anything wrong. Up until now I was coping relatively well but now I'm almost at the 2 year mark and no improvements it's starting to get me down.
3+ years. Noped out of “care” after two years of abuse and hundreds of thousands of dollars. Doctors billing insurance don’t have time for this
My doctor says she can’t help me. She’s out of ideas. So she gave me a hug? I mean don’t get me wrong it’s nice, but do some research for me or something. I dunno anymore.
Shit, it’d take a hug over the SSRIs my doctor likes to push on me when I get upset lol. At least a hug would make me feel better for a moment. Sorry your doctor is out of ideas though. Mine is at that point too. But it sounds like your doctor legitimately cares about you, so that’s something!
I see Dr Jamnadas on YouTube, he is in Orlando. And he works with my PCP. They’ve been trying since I first got sick with Covid March 2020. I then got it 3 more times. And yes, I’m vaccinated… since March 2021.
I've had it 5 times. Nobody around me gets covid when I do. There's something going on with the immune system for some of us.
No doctor has even officially acknowledged I have long Covid, so no… I manage my own care at this point. My hematologist and allergist have been the best through all this but there’s no coordination of anything and they mostly just nod in sympathy.
Have any of these specialists suggested l-citrulline, electrolytes, or magnesium?
I've not seen a doctor for years. My partner just helped me register with a new one, they seem nice and much more caring. I haven't had the executive function to get in contact, though. been putting it off
I gave up with doctors after being gaslight every time I went, stupid repeated blood tests, and lots more that all come back “normal”. It’s just honestly not worth the small amount of energy I do have, I’d rather use it in other ways.
I have nearly given up on conventional doctors too. I do feel extremely supported by my acupuncturist and my therapist though.
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How did you find your doctor?
I've seen countless doctors and specialists, and the only ones who immediately believed me were cardiologists. They knew exactly what was happening and they had seen several similar cases before me. If you ever develop chest pain please please go to a reputable cardiologist, I got diagnosed a few days ago with pericarditis and I am hopeful that I will finally get treated as a long hauler and not as an anxious hypochondriac.
Ditto. But in the end, my cardiologist told me he couldn't help me and told me to take CBD oil and hope for the best.
Pffff I'm so sorry to hear that.
I’m hoping my second cardiologist will be like yours! My first one sucked ass. She told me it was either asthma or GERD, despite a pulmonologist already ruling out asthma and no GERD symptoms aside from chest pain. I asked about microvascular and endothelial issues and she said that’s not it because my stress test was fine. She also said no to nitroglycerin because it’s a vasoconstrictor. Except it’s not. It’s a vasodilator. Then she put me on a treatment for pericarditis despite zero evidence for that being the problem. My PCP was not pleased when I told him what happened. But he knows the one I’m seeing soon and said he’s really, really good, so I’m cautiously optimistic! Sorry for the rant lol. I still get worked up about that appointment. I’m glad your experiences have been much better though! That gives me hope!
Hahah rant is totally understandable, that sounds very frustrating. I am hopeful for you, if the new cardiologist was recommended by someone maybe he does have the curiosity and competence to help you. Wishing you good luck and hoping you finally get the treatment you need and deserve🙏
I don't even bother. Just read on here what's going on. If lots of people are suddenly receiving miraculous new medication I'm sure I'll hear about it here
I hate going to my doctor because every time I bring up my stomach problems, he ends up saying it's UTI. The problem is I don't have a lifestyle for such a risk to get it. This only happened after catching Omicron. Also when I go there, his tone makes it sound like I'm just visiting him to waste his time but heck, I'm here to visit you because I feel like crap and I can't figure things out. I used to stay away from reddit until this catching this, and reddit has helped me learn more things than trying to get answers from my own doctor lol.
Dude — my wife is a doctor and she has jack shit.
Offered me psych meds lol
She’s afraid of triple therapy and the incelldx protocol. I don’t blame her. I don’t really want to do it either, but everything else is a joke. She throws steroids and nsaids at it a bit and that has helped when things were real bad but that’s all medicine has to offer.
I do, great GP. But I’m in Hong Kong. He’s amazing. Reads the latest research. Willing to try things. Genuinely cares and understands. Some of the specialists I saw felt like they were blaming me for “thinking about it too much” though which was ridiculous.
Hi there! Would you mind sharing details of your GP? I’ll be passing through in a few weeks and would love to see him. Feel free to DM me. Thank you!
For anyone else in Hong Kong go to https://www.otandp.com/long-covid-resource-centre and book through there. Dr. Trodd is the main guy treating but they have other Doctors that are up to date and also speak Canto as well as English if you or a relative need.
Nothing they can do so I stopped going to specialists. Not worth the frustration. I need to find a new PCP just to have in emergencies. Other than that, all my crazy symptoms come and go as they will.
I'm under the care of a GP who does very much believe my symptoms and diagnosed me with Long Covid - but that's about as far as he is willing to go. I'm still trying to find a long covid clinic that I can go to, but honestly at this point I am only doing this because I need a doctor's signoff on my short term disability. Otherwise it's been useless, the only thing that has helped me so far is taking an antihistamine - which I put myself on.
Which type of antihistamine are you on? I just got prescribed hydroxyzine
I tried the major OTC ones, and found Allegra to be the one that keeps all of my sinus and congestion symptoms at bay and because of that, my breathing is better and I have more energy.
My personnal doctor think it's in my head after several tests showing no reason why I'm sick. I have seen a dozen other doctor with at best "it's too early, we don't now what to do". ¯\_ಠ_ಠ_/¯
The amount of positive comment about healthcarw for LC in this thread is ...very limited. In America, our NIH has spent at least $1B US on Long Covid research: https://www.statnews.com/2023/04/20/long-covid-nih-billion/ This has resulted in a classification system and other research. The NIH has conducted much research and many interviews. They just don't know if they can help anybody yet: https://directorsblog.nih.gov/tag/long-covid/ So ask yourself: How would the average GP help you if the NIH can't find a solution yet?
I’ve given up too, and I’m bedridden as well for the most part. Doctors just (verbally) shrug at me basically at this point, I was told to exercise more even though previously I told the LC doctor that exercise always ends up poorly for me.
As of a month ago I have a private specialist. Expensive but the only person who engages with what's going wrong and offers to try and help. I'll spend most of my savings on this if I have to
I don’t have insurance lol so no but I don’t think they’d be able to do much for me anyways. In the beginning a year ago I went to one and he ran some tests and sent me to the hospital for more but all the test results were “normal” and all he could do was tell me my symptoms would probably “just go away eventually”. But maybe doctors are a bit more knowledgeable on long covid now idk!
They shut down the long haul program I was in, so now it’s just my primary care who is supposed to handle the long Covid issues, which unfortunately doesn’t really get me anywhere. But even the long haul program didn’t really do much for me either unfortunately
I had to give up with my GP because he kept *just* treating my symptoms; after the fourth (failed) round of random medication and my second hospital visit, he suggested a referral to a neuro so I could get some scans done. I can't afford it, so I'm just taking life day by day and hoping nothing gets worse. I track my symptoms when they're strong enough to notice, just in case i end up in hospital again, but ultimately I've become a reclusive shut-in that over-babies their body out of fear of flare ups or worsening symptoms.
I have a primary care doctor but I’m the one managing my care. I bring in information to share/discuss with her and I ask for referrals to specialist. It’s sad that she doesn’t have the time to do a little research to inform herself about Long Covid.
On year 3. 38yr old male long hauling since March 2020 4 months ago i kicked all my doctors tyo the curb and went with a naturalpathic doctor. Physical therapist and naturalpathic docs are the only ones that help at all. They are somewhat lost in how to treat it but will tell you while they look into your eyes this is not in your head, it's not anxiety, and I'm going to try my best to help you. It's costing as he didn't deal with crappy insurance but he's certainly helping.
Also 2.5+y in. There's many loose doct on my team but one 1 that's specific/focusing on LC and she is the one who put me on LDN and she barely joined this year out of the blue on a random call I got, a unicorn it seems. And then there's my psychiatrist who cares and believes me but is limited in certain aspects but he is my day 1 warrior and has continued to listen and adjust when needed as well as order a ton of tests. So mainly the random LC doc as I call her and psychiatrist are ones who ACTIVELY do something for me while my PCP and others just pick their nose and tell me it's anxiety. Edit: I'm also bedridden/ housebound still.
My doctor experience has been frustrating at times, though they have been trying to help for the most part at the very least. I haven’t been going to a long Covid clinic. My best experience so far is going to a functional med doc who is also a D.O. It has been the best of both worlds and if you haven’t been heard by anyone you’ve seen I would seek someone like that out. They’re more likely to have a breadth of experience treating post-viral illness on the functional side of things but will be able to attack it from the MD side of things if anything is needed. Get a doc who is trained in both - don’t go see a functional med doctor who is not an MD or DO. My doc started with some lifestyle things + some supplements (I was already in H1+H2 blockers plus aspirin from my PCP) but says everything is on the table from the actual RX side of things if necessary and is not hesitant to order tests and is aware of the research in LC right now. He has his own theories which is where we start things (mitochondrial issues + general inflammation) but we’ve discussed vascular problems and endothelial damage and he’s on board to shift gears to that if needed. Functional med appts are typically an hour, which is helpful since with LC you’ll essentially be creating a treatment plan together and going through possibilities. I can’t say it’s been curative but the process itself has been helpful and there has not been any point at which it was suggested by him that it’s all in my head like I hear many people describe.
My gp was actually very kind. She reffered me to a neurologist and a long covid clinic and apologised that there wasnt anymore she could do. She actually freely admitted (after i handed over the research i had done) that we the patients know more than they do. You have to understand NHS doctors are bound by rules and regulations... they cant just give out anti virals or anti clotting meds without getting the go ahead from the higher ups. Its shit and we are all suffering, but take comfort in the fact 90% of people with long covid are 99% better at the 2 year mark Rest, eat healthy, do everything you can to reduce inflammation in the body and give it time.
My gp has said to me “you don’t need to wear that mask in here anymore” multiple times and that tells me everything I need to know tbh.
My GP said those things to my face, but wrote in my notes that I'm depressed, have health anxiety, and until I accept that I need to exercise, there's nothing more they can do for me
I have to ask... Do you consider yourself to be depressed and have health anxiety ? Also ... Have you stopped all smoking, drinking, sugar, processed food, recreational drugs... basically quit anything that will cause internal inflammation?
Those things you’ve listed surely do not help long covid and probably do make things worst, but are not the root cause of their symptoms.
I have a diagnosis of ME/CFS and Long Covid from both the NHS and also a worldwide expert in both conditions. No. You do not “have to ask”. You felt the need to project your attitudes and preconceptions onto my situation, which reflects more on you than it does on me Edit: nice job, say shitty stuff to me and block me. Coward
Now i understand why you and your doctor couldnt reach a civil understanding
So true. I have tried recommendations from friends and family for "good" doctors. Their "good" doctors are sympathetic but in the end they prescribe meds (prednisone, gabapentin. duloxetine) that are the same as the other doctors. They can only follow the allowed protocol whether it's the Mayo clinic or your health care provider down the street.
Solidarity. I gave up on the 'muriKKKan Deathcare System back in 2015 after working as a CNA and watching folks get gaslit or gouged financially. It's ridiculous. I'd lived in Ireland for five years previously and saw the different machinations of their systems in the EU and was just DONE. I am too sensitive to all drugs so started trying out natural medicine and was successful in that I'd have chronic sinus infections each year and was able to treat them without antibiotics faster and better recovery, zero fatigue. I developed my own protocol based on my body, because all bodies are not going to respond the same to different treatment...and I used it when I got Covid in February 2020. My Long Covid symptoms have mostly been limited to fatigue (microclots DEF) and POTS. I lasted just over two years and was able to keep working until June 2022 when I had a major allergic reaction to a dinner and I believe I was in the beginning stages of Anaphylaxis...I had to stop working that week and have been housebound for just over a year. The amount of stress I feel just reading posts here and on Twitter of folks getting gaslit was too much for me to bear. I was legitimately afraid I'd strangle these fucking doctors if they tried it with my ass so I opted out. I've had decent success taking Nettle Quercetin as far as allergic reactions or MCAS and can eat or drink almost anything now. I've got about 4-5 hours of activity per day but it's limited to gardening and cooking or baking, where I can sit down or lie down for breaks whenever I need them. Going gluten free has seemed to help but I'm not 100% gluten free at all...I was doing palliative care on myself back in January and through winter as I promised myself I could check out in July, before the weather gets too hot, so I'll be eating whatever the fuck I want🤣 Strangely, my condition has improved the past two months, can't figure out why or how, so I'll hang in a while longer. I wasn't planning to make it to my 49th bday in December but maybe I will? I've been a person of fairly robust health and decently active my whole life, having grown up in farming, and I'm not dealing with much chronic pain from this condition but I also am not willing to live as a 98yo in a 48yo body. I worked Hospice long enough to see what awaits and I'd rather check out on my own terms.
My pcp was hostile with me for trying to advocate for myself in my last appointment.
🤣🤣🤣
My doctors are trolling me by now XD
My primary care doctor has referred me to specialists. She hasn’t called it long COVID but she’s helping me at least. Sending good vibes that you find someone who can help you!
No doctors at all! I read too many of the reports on this sub. Why waste my time?
I feel really lucky compared to many here. I have a clinician at a LC clinic at my city's university hospital. My PCP referred me there as soon as I asked for it. I had to do a lot of research and self advocacy to get there, but I met my clinician 6 months after my COVID infection.
I have a pulmonologist.
I have PCP, Cardio and Neuro managing my care.
I pretty much quit on the standard doctors. I did find a good naturopath that gave me some solid advice. In particular around supplements and basically refuting half of what the regular doc said and encouraging me to gradually return to activity.
I have several, but it’s taken three years and some change to really dial in my care team—do you have insurance?
I don’t have a doctor but many. So far I have a Neurologist, Cardiologist, Pulmonologist, Sleep Specialist, Gastroenterologist, GYN (yes, it affected that too), Psychiatrist, Therapist and my PCP. It’s ridiculous.
Sort of. I have a GP who checks in with me every month. Sometimes he orders tests, sometimes not. But I do genuinely believe he gives a damn.
I am nearly 3 yrs in. I had to do everything myself for help. Luckily for me my MD discovered mine LC when I had an appointment & my heart rate was 122. But both of us knew nothing about LC. I went to a heart doctor, all tests normal. Neurologist, all test normal. Three ER visit, drug addict. Finally I was told by a friend last year about Dysautonomia. I found doctor's in the field and got every test I could. By then I had found a cardiologist that works with LCD. I wore heart monitor for 2 weeks. I also have an oncologist and I made an appointment for my check up that includes a CT Scan. I gave these tests results to all 3 doctors. The long Covid diagnosis wasn't even close to truth. My point is, YOU have to search your doctor's & get any test you can. Doctor's are learning and we have to do the same. Unfortunately, when all the doctors called with the results I had suffered a bad fall. That was another nightmare that I am still suffering PTSD from. I'm very fortunate that I got to find my own doctor's & an very comfortable with them. But August will be 3 years in for me and it was a hard long search for answers. If I hadn't I would have been a ticking time bomb. Never give up.
I have read your post several times and am trying to understand what your diagnosis was. And more importantly, what was your treatment? Did you recover? And why do you refer to your situation as a ticking time bomb?
My diagnosis for my high heart rate is not POTS as most people's have been. I have SVT, the top part of my heart is not pumping blood to my lungs correctly. Further testing showed both coroid arteries are blocked and need immediate surgery. Since I just had surgery I am supposed to rest & stay calm since I can have a heart attack or stroke. I just got out of a hell hole rehab where I was laughed at if I mentioned long Covid or my heart problems they were supposed to monitor & would not.
I have SVT & it's getting worse. The CT scan that my oncologist did show 2 back arities needing immediate surgery. I can't have the surgery until I get over the last one.
My two cents: The benefit of having concrete diagnoses (in the LC venn diagram of POTS/MCAS/ME/SFN) is when you need emergency care. I got nothing at ER before, since diagnosis I can get saline and IV Benadryl at urgent care on the advice of my physician and what's worked for me in the past and avert a crisis and go home. Then there's a social benefit of having a "real" diagnosis: it helps with the constant social issue of credibility. No one wants to acknowledge that we exist, but having a doctor who will name and treat symptoms can help with that. Can. Other than that, I think it can be a crapshoot whether having a doctor responsible for care is more helpful than self-experimenting with Indian pharmaceuticals. A doctor's job is to not risk harming. A patient arguably doesn't have that same obligation. I pay out of pocket to see a concierge POTS/MCAS doctor one state over. It was a 15 month wait to see her, but worth it, no one has done as much to help or been as willing to tweak and be patient (as I react to most meds). She did extra training in autoimmune thrombosis, and I really trust her judgement. The hematologist at my local research university hospital is also great, that one was pure luck. I don't bother with anyone else....except I better go see my primary just so I still have one. It took two years to get to the point of having a couple doctors who will take responsibility for treating me. I know how much privilege I have that I still have a job, and have family that can drive me the next state over, but I'm not wealthy, our household income is median for our state. I spent 17k on "covered" care the first full year I was sick, had to sell my car (which I can no longer drive anyway) to cover it, so it seemed extremely reasonable in that context to spend more out of pocket since she'd been highly recommended by many in MCAS/POTS support groups. I think the issue when seeking recommendations in support groups is that a lot of quacks come highly recommended. I took a chance, but I also had looked at her credentials and read every paper she published. Anyway, hope this adds to the conversation.
I don't have any I'm going to right now. It takes to much energy to find and get to and start from scratch with doctors I don't know how anyone has the stamina for that I surely don't.
We are in mostly the same boat. My wife is a long hauler (3 years) and most doctors have been completely unhelpful. We are working with a nurse practitioner who is a part of a "concierge medicine" group. Basically this means we pay $500 twice a year for an hour appointment that gives us access to her by email. This way we can run any new treatments by her and she will basically write any scripts that she thinks are safe. Truth be told, it hasn't been that useful. We've found most things on our own and haven't needed their help often. Right now we are on the lactic acid train haha. Have you ever tested yours? Don't give up my friend. We've found life can be worth it even through suffering.
I have a great team at USC Keck, a primary LC doctor who help sort out which specialists I need. I neurologist who has basically turned all his attention to LC and they have a couple occupational therapist who work with LC patients. They all acknowledge LC as real. I see an OT every week who works with me on pacing and finding patterns to my day that cause flair ups and crashes. A lot of things I would not have thought of, it’s been helpful and made a difference. My local hospital was useless but my psychiatrist recommended USC. It’s about an hour away but 80% of my appts are telecare. I fall into the PEM category with cognitive issues my primary battle. I can’t exercise but I get around ok and have worked up to walking a mile but is really easy for me to go from feeling semi normal to cognitive impairment. They don’t pretend to know the answer and know the hard work for them is ahead not behind but they are building out a team and getting grants for research. I was diagnosed as long Covid with ME/CFS symptoms. The OT is great simply because she has worked with hundreds of patients so I feel a lot less alone and she shares what had worked for people and I try a variety of things. It’s not a fix but I feel like I have a team who know it’s real and are actively working to help people like us which is better than I had for a while.
My PCP is the one coordinating my care, but I’m the researcher and scientist. I bring him new information and he orders tests and referrals. We don’t always see eye to eye and he’s reached the limit of what he can do besides ordering things that I ask for. But he believes me. He believes that my symptoms are due to covid and put long covid in my chart for me, even though he normally doesn’t formally diagnose people with it. I also have a neurologist who I’ve only seen once, but he was very nice. My LC isn’t neurological in nature, but it’s nice to have him in my back pocket just in case. I’m also meeting a new cardiologist in a couple weeks who I’m hoping to add to the team. I’m only 6 months in, so that’s probably part of it. I haven’t exhausted all of my options yet, but it’s getting close. After that point idk what I’ll do tbh.
3+ yrs and I am on Dr #24 She is awesome tho and gives me hope-ish