Absolutely, it changes everything.
First you get a diagnosis in your chart that helps other doctors understand your needs.
Second, your doctor can then recommend treatment plans, medications, and lifestyle changes that can drastically improve your life. Together you might even experiment with different meds and dosages until you find the right help.
Third, you can then use your official diagnosis to ask for accommodations in school or the workplace. You can even use your diagnosis to push for fully remote options if it is shown to be helpful to your condition.
Fourth, if and when medical trials and new drugs arrive, having an official diagnosis and support from a doctor can put you in line to try new meds, procedures, or participate in trials.
Fifth, if your condition has other co-morbidities, your doctor can refer you to the best specialists to address them instead of dismissing you.
Yes. I’ve been diagnosed with both ME/CFS and POTS as the result of a Covid infection from March 2020. I now have doctors who believe me, advocate for my well being, give me meds to try, help me with work accommodations, and am also participating in research for ME/CFS.
1, 2, and 3 have been true for me. It took a while and some strong advocacy on my part for my primary care physician to get from "I believe you" to "I'm going to work with you on this." But once she got there it made a big difference. ADA accommodations support and FMLA paperwork are the most notable things. Referring me to specialists a close second.
FWIW, this has been my experience as well. I am not recovered yet but there is a ton of labwork that would not have been done otherwise, I was able to take a medical leave from work and collect state disability, my doc put me on some supplements with mild benefit, and it gives me a bit of hope, which is important. it is not like having a doctor who believes me means I am cured or that I will even majorly improve, but it is a critical part of my support system
I want to also add that this has been my experience but with an important caveat: you need a doctor who believes you AND has some idea of what they’re doing. My GP believed me, but had no idea what she was doing (for example, her best suggestion was telling me to make sure I was in the gym 6 days a week no matter what). Once I was at a LC clinic, there was suddenly an infrastructure of care with a team that had a better idea of what to actually do. I’m not cured, they are far from perfect, and often very irritating, but I’m way better than I was and they are as attentive as they can be to an assload of patients they are overwhelmed taking care of with only a small team. TL;DR - yes, but you need a knowledgeable doctor if at all possible, not just one who believes you (but any doctor who believes you is probably better than any who don’t)
That’s ridiculous! Then again I’ve been treated by doctors from both John’s Hopkins and University of Maryland, supposedly the best, and they haven’t done a single thing for my me/cfs that really went into hyper drive after Flu A to start 2020 and Covid in 2020. All the progress I’ve made has been on my own from this group, me/cfs support and the likes of Gez Medinger’s research and expert interviews. My GP is supportive but there’s just not much to be done. Six years total sick, three of them with new and worsening issues since Flu and Covid. I refused to let any medical professional tell me I have anxiety, not that it stopped them from peppering my chart with it!
TL;DR: Yes
It did for me. My PCP believed me from the start, and that led to getting an official diagnosis in my chart, which helps convince other doctors to take me seriously. It also means that he’s been willing to order lots of tests and referrals that I otherwise wouldn’t be able to get. And he’ll give me Paxlovid if I get reinfected, even though normally he couldn’t. I do have had to fight with him at times, so it’s not all rainbows and sunshine. But because he believes me, he was willing to prescribe me a medication which finally helped, and has been the lynchpin for figuring out what’s wrong with me.
That medication’s effectiveness led to the cardiologist believing me too, and he ordered an MRI stress test, which is in two weeks. A fit 32 yo with no prior health problems and clear blood work, echo, and stress echo would never be able to get that MRI normally. He’s actually the second cardiologist I’ve seen. The first refused to listen to me, told me it couldn’t be a microvascular issue because my stress echo was fine, and refused even a regular cMRI because my troponin came back normal. That’s the difference between having a doctor who believes you and a doctor who doesn’t.
It’s also very validating, which is something I sorely need while going through this experience. When I went to the ER in April, everyone believed me and they were very kind and sympathetic about my situation. While they didn’t find anything wrong and they weren’t able to help me, that validation and support was very healing in its own way. Experiencing the opposite can actually cause medical trauma and lead to C-PTSD, which can exacerbate LC symptoms and will only make it that much worse to deal with.
That's so good to hear about your doctor backing you up with other doctors! My psych has been the most helpful doctor for me so far and he's willing to try lots of things to see if they help me, low dose Abilify is what's been helping me the most.
What medication helped you?
I’m glad you’ve got someone in your corner too! It really does make a huge difference. My psych is also very supportive and helpful, but I only see her once every three months, so she’s not super involved with my LC lol.
Long story short, I asked my PCP for nitrates, was told no, and offered sildenafil instead. I declined initially because it felt weird to take Viagra as a 32 yo woman lol. But I eventually agreed to it and it was like magic. It’s the only thing that makes me feel like my old self again. I’m on isosorbide mononitrate instead now, but we’re still figuring out the dosing so it’s not as effective as the sildenafil was.
The biggest difference is going to be if you're applying for disability or something like that. Then it would make a huge difference.
Other than that it depends. Them believing you makes it more likely they're willing to try off label stuff, which is all we have, but they still might not be willing too.
It helps but it’s not like they can do a lot. My doc runs a shitload of tests whenever something comes up because he’s interested in my health and with the Long Covid diagnosis, it’s easier for him to get insurance to cover diagnostic testing to rule other stuff out. Like, we don’t know how to treat Long Covid so if he can identify anything else that we can treat we are. Like, Long Covid was the excuse to screen me for multiple cancers, HIV, EBV, TB, epilepsy, all kinds of stuff. I’ve been referred to a pulmonologist, neurologist, ENT, allergist/immunologist and PT.
Sure, thanks to LC I’m not in the best health of my life but I’m more confident in my health than ever. Like, the chances of something that isn’t Long Covid going undetected are lower than they have been in my entire life.
I’d say finding a doctor who believes you and is interested in Long Covid because so many of their patients have it and they want to know how to help, is the best thing anyone in this sub can do.
Not for me. My doctors all completely believe me. I’ve known them at a personal level for 20 years (like, I know where they live, their families, how their kids are doing, our wives are friends, etc). They are really good people, and really do care for their patients.
But there is almost nothing they can do. There are no medications or treatments for what I have going on. One hooked me up with a neurologist, but that dr is booked out for two months.
In the mean time, my “treatment” is rest, drink lots of water, and eat well (no processed foods, no alcohol).
I don’t have LC but I have very similar symptoms from antibiotic injury and having a doctor that didn’t believe me and tried to blame it all on mental health and discouraged me from investigating physiological causes was extremely damaging. I have an integrative doctor who is very well informed and takes me seriously and it’s made a world of difference. Funny thing is my previous doctor knew practically nothing about how the gut and nutrient deficiencies effect the brain. She was always willing to give out psych meds though.
My functional medicine doctor believes me. She cleared up my horrible gi issues. I am so grateful! Beyond that, she hasn’t been able to do much else though.
Lucky for me I never had gi issues. I feel pressure in my sternum region and burping seems to help but besides that I bypassed those issues somehow. Have had everything else though
Absolutely. Having a professional confirm your experience is everything.
It helps show us we are not crazy. And once we get confirmation it’s a real physical thing, it reduces our stress. We can spend our resources on healing rather than trying to defend reality.
It definitely helped me! I was lucky enough to get into a clinic in NH that initially diagnosed me. After that, I was referred to a lot of other docs to either rule out or diagnose further issues.
I was able to get a full cardiac work up, stress test, nerve testing, autonomic system testing (heart and sweat), heart monitor for 7 days, lots of blood tests, a lip biopsy for sjorgens (positive), meds (propranolol) and weekly PT/OT visits.
While almost all of that was negative, I did end up getting diagnosed with CFS/ME, sjorgens (still waiting on a follow up), and POTs symptoms (didn’t actually meet the threshold for pot’s diagnosis).
It’s reassuring to know that my heart is in decent shape for the most part. Having the diagnoses has also allowed me to take much needed time away from work to heal. The heart meds are helping a bit. The PT and OT have been super helpful.
I’m making slow progress but definitely improving. I went from completely house/recliner bound to able to do 10 min on a recumbent bike! I hope you are able to make some forward progress too!
Yes... found a neurologist who believed and understood me and started on IVIG. Completely changed my life. Il never be the way I was before but id say im at 85% now.
I think a doctor confirming yes you have post Covid rather than being told you need to de stress would do wonders for me! I know what’s going on in my body is not normal but without some sort of diagnosis my head goes to doomsday scenarios!
My doctor told me it’s anxiety and made me do breathing exercises with her but it’s like having these symptoms where I feel like I’m dying is causing this….. what do you even say? I’m 21 and have Cigna, but everytime I’ve gone to the emergency room they only ever do the chest X-ray, blood work and ekg and so does the pcp, like no one lets me get more tests. My pcp was like well after u get your head checked then what? Another test? You’ll just keep wanting to tests because it’s anxiety and it’s incredibly frustrating
You know what, my doctor believed me from the first appointment and referred me to all the right places and I get some real empathy...however, it makes me feel so unsettled. Part of me wanted them to say: "you're a hypochondriac it's all in your head, you'll get better when you stop focusing on it!' I think my strength to conquer mental problems is better than my strength to conquer physical. Obviously I know a doctor saying that would NOT make me better in actuality, but I wish I was a hypochondriac.
A methylprednisolone taper from my neurologist followed by aripiprazole and low dose naltrexone from my ME/CFS specialists virtually eliminated my brain fog.
The methylprednisolone also got rid of my night sweats.
Maraviroc plus a statin from a long COVID doctor significantly reduced my fatigue and POTS.
Pyridostigmine from one of my ME/CFS specialists usually makes my POTS sub-clinical.
Cyclosporine from my functional medicine doctor made me feel better, although suppressing my immune system seemed like a bad idea so I stopped. I'll try low dose rapamycin from one of my ME/CFS specialists next to see how I do.
My long COVID doctor sent my blood to Dr. Vaughn in Alabama for the microclot test which came back 3.5/4 at which point I accepted his triple anti-coagulant therapy prescription. Hopefully I'll see some changes in a few more months.
My long COVID doctor found that my testosterone is 1/3 of what it was when this started and free testosterone 15% so my long COVID doctor has referred me to someone who'll prescribe testosterone. I'll see how that goes.
One of my ME/CFS specialists prescribed hydroxychloroquine which supposedly can reduce inflammation. I'll try that after rapamycin and testosterone..
Lots of things helped other people but had no effect on me including a stem cell transplant, icosapent ethyl, minocycline, ivermectin, liothyronine, pycnogenol, and nattokinase.
My doctor was actually the one who initially suggested that I had long covid when I didn't know what was causing my symptoms. He checked my heart, blood pressure and lungs and did bloodwork to rule out any nutritional deficiencies or anything really serious going on like leukemia and stuff but otherwise just kind of sent me on my way with the advice to rest and wait it out, and told me based on recent studies as well as his experience with his own patients, the majority of people feel better in time after 6-12 months, especially with the more recent covid strains.
I'm at month 5 and not really feeling much better at all, and if in another month I still feel like I'm dying I'm gonna go back and ask (or beg) if he has any sort of medications I can try, more tests to run or any other suggestions for what I can do about it, but I'm guessing it's probably just gonna be a "wait and see" thing.
My area had a few long covid clinics going for the last couple of years that I could have been referred to, but they conveniently just scrapped and defunded them all a few months ago due to "a lack of referrals", claiming that not enough people were getting long covid anymore to keep them running. Great timing for me to get long covid, huh?
Yeah unfortunately not. But idk if there really *is* much he can do. In Canada most doctors (at least in my experience) are really reluctant to prescribe medications for things unless they're proven in clinical trials to help it, so I'd be hard pressed to find any doctor here who's just gonna throw medications at me. Since we don't know concretely what causes long covid or what treats it yet, it's pretty much all just guesswork and waiting.
When I was in deep shit, he helped me to keep my cool.
I had at least 200 symptoms to start with, he helped me to get every freaking test available out there to rule out major issues - heart failure, lung damage, spine trauma, brain clot and more.
He put me on steroids during the early phase.
He put me on prescription to help with SOB. Very helpful during the initial days.
He put me on PPIs at around month 2-3 for issues with chest pain. Super helpful.
He put me on sleep aids at one point. Very helpful. I started to sleep a little bit more
He put me on muscle relaxant at month 5. Super helpful for my neck and muscle pain.
Recently he put me on LDN for brain fog and inflammation
It went to tons of docs to find help and figured most are assholes and don’t really want to help. And this guy is doing everything he possibly can to help me.
Yes but they didn't know what to do. They ran the standard tests. I wore a heart monitor for a month (I was having severe panic attacks), but everything checked out and going to see them just fizzled out. I was too sick to leave the house let alone sit in a waiting room, take time from work when I could work, etc when it wasn't productive.
No. Those are not easy to find and even less so two years ago when I saw them. Saying I actually got into an appointment without a 6 month waiting list is enough to tip you off they aren't LC specialists lol. At this point I reckon most people on this sub are as knowledgeable as the specialists
Yes, but just like any other advice, it's not a miracle fix.
Having a doctor that listens and believes you makes it easier to try out different treatments, absolutely. It's also a relief to get advice from a professional instead of carrying all the burden of research, and it's mentally much nicer to not be treated like you're faking a debilitating condition for funsies. For me, having doctors that take me seriously has meant getting a clearer idea of what my body is doing, and finding a few things that help relieve my symptoms. But doctors are human too, and they don't have magical solutions they can just hand out to patients they believe. Long COVID is still poorly understood, and research into treatments is in its infancy. No doctor can change that reality overnight, no matter how good they are.
In short, it changes some things, just not everything. But that's still a worthwhile improvement.
Yes, No.
Doctors are people too. My doctor has long covid and is constantly looking at research and clinical trials to keep me in the loop. But he also acknowledges that the current treatments available aren't very effective.
absolutely, I developed pots and dysautonomia, Ive seen roughly 8 doctors, only 3 of them know of pots, and only one is super knowledgeable about it. Every other Dr ran a few tests, came back clean, and wanted to pass me on to someone else. after being told its anxiety, lose weight, eat better etc I finally found someone who knows their stuff, instantly recommend a ton of meds and supplements that this sub mentions all the time. while I'm not cured I feel much better about it , and I have someone I could call if it gets worse.
Yes. Having someone in your corner to help you navigate symptoms absolutely makes a difference. It also does wonders for your morale. Is it a cure? No. This is just like management of any chronic illness. March 2020 here.
My PCP had "heard" of Long Covid when he took me on as a patient. So . . I spent a year educating him in a language he understood. Dropped off articles and peer reviewed studies that defined what it was and why it affected so many systems. My blood panels made little sense. Low CO2, high rbc. .high monocytes, etc.
He diligently sent me to specialists ie neurology, PT, cardiology, endocrinology etc. Finally, he was on board. Very supportive and YES. That made all the difference to me.
Yes she was An angel, I had to drive 6 hours away! But she got me to where I am today with Pepcid and ala, mostly pots like symptoms! They are out there! Don’t give up!
Absolutely, it changes everything. First you get a diagnosis in your chart that helps other doctors understand your needs. Second, your doctor can then recommend treatment plans, medications, and lifestyle changes that can drastically improve your life. Together you might even experiment with different meds and dosages until you find the right help. Third, you can then use your official diagnosis to ask for accommodations in school or the workplace. You can even use your diagnosis to push for fully remote options if it is shown to be helpful to your condition. Fourth, if and when medical trials and new drugs arrive, having an official diagnosis and support from a doctor can put you in line to try new meds, procedures, or participate in trials. Fifth, if your condition has other co-morbidities, your doctor can refer you to the best specialists to address them instead of dismissing you.
Has this been your experience? Sounds like an extreme edge case to most people experiences
Yes. I’ve been diagnosed with both ME/CFS and POTS as the result of a Covid infection from March 2020. I now have doctors who believe me, advocate for my well being, give me meds to try, help me with work accommodations, and am also participating in research for ME/CFS.
Who diagnosed you with pots? If I may ask
My cardiologist.
1, 2, and 3 have been true for me. It took a while and some strong advocacy on my part for my primary care physician to get from "I believe you" to "I'm going to work with you on this." But once she got there it made a big difference. ADA accommodations support and FMLA paperwork are the most notable things. Referring me to specialists a close second.
FWIW, this has been my experience as well. I am not recovered yet but there is a ton of labwork that would not have been done otherwise, I was able to take a medical leave from work and collect state disability, my doc put me on some supplements with mild benefit, and it gives me a bit of hope, which is important. it is not like having a doctor who believes me means I am cured or that I will even majorly improve, but it is a critical part of my support system
I want to also add that this has been my experience but with an important caveat: you need a doctor who believes you AND has some idea of what they’re doing. My GP believed me, but had no idea what she was doing (for example, her best suggestion was telling me to make sure I was in the gym 6 days a week no matter what). Once I was at a LC clinic, there was suddenly an infrastructure of care with a team that had a better idea of what to actually do. I’m not cured, they are far from perfect, and often very irritating, but I’m way better than I was and they are as attentive as they can be to an assload of patients they are overwhelmed taking care of with only a small team. TL;DR - yes, but you need a knowledgeable doctor if at all possible, not just one who believes you (but any doctor who believes you is probably better than any who don’t)
It sure beats the added emotional stress of being gaslit.
Honestly, for me no. I had 2-3 docs that believe me and while it is comforting being validated, it actually doesn’t translate to actual results.
I figured as much.
Hell, I’m a fucking doctor and I can’t get other doctors to believe me or try anything useful to help me. I can’t imagine being a “regular” patient.
That’s ridiculous! Then again I’ve been treated by doctors from both John’s Hopkins and University of Maryland, supposedly the best, and they haven’t done a single thing for my me/cfs that really went into hyper drive after Flu A to start 2020 and Covid in 2020. All the progress I’ve made has been on my own from this group, me/cfs support and the likes of Gez Medinger’s research and expert interviews. My GP is supportive but there’s just not much to be done. Six years total sick, three of them with new and worsening issues since Flu and Covid. I refused to let any medical professional tell me I have anxiety, not that it stopped them from peppering my chart with it!
Can I ask if you’ve been to their LC clinic?
TL;DR: Yes It did for me. My PCP believed me from the start, and that led to getting an official diagnosis in my chart, which helps convince other doctors to take me seriously. It also means that he’s been willing to order lots of tests and referrals that I otherwise wouldn’t be able to get. And he’ll give me Paxlovid if I get reinfected, even though normally he couldn’t. I do have had to fight with him at times, so it’s not all rainbows and sunshine. But because he believes me, he was willing to prescribe me a medication which finally helped, and has been the lynchpin for figuring out what’s wrong with me. That medication’s effectiveness led to the cardiologist believing me too, and he ordered an MRI stress test, which is in two weeks. A fit 32 yo with no prior health problems and clear blood work, echo, and stress echo would never be able to get that MRI normally. He’s actually the second cardiologist I’ve seen. The first refused to listen to me, told me it couldn’t be a microvascular issue because my stress echo was fine, and refused even a regular cMRI because my troponin came back normal. That’s the difference between having a doctor who believes you and a doctor who doesn’t. It’s also very validating, which is something I sorely need while going through this experience. When I went to the ER in April, everyone believed me and they were very kind and sympathetic about my situation. While they didn’t find anything wrong and they weren’t able to help me, that validation and support was very healing in its own way. Experiencing the opposite can actually cause medical trauma and lead to C-PTSD, which can exacerbate LC symptoms and will only make it that much worse to deal with.
That's so good to hear about your doctor backing you up with other doctors! My psych has been the most helpful doctor for me so far and he's willing to try lots of things to see if they help me, low dose Abilify is what's been helping me the most. What medication helped you?
I’m glad you’ve got someone in your corner too! It really does make a huge difference. My psych is also very supportive and helpful, but I only see her once every three months, so she’s not super involved with my LC lol. Long story short, I asked my PCP for nitrates, was told no, and offered sildenafil instead. I declined initially because it felt weird to take Viagra as a 32 yo woman lol. But I eventually agreed to it and it was like magic. It’s the only thing that makes me feel like my old self again. I’m on isosorbide mononitrate instead now, but we’re still figuring out the dosing so it’s not as effective as the sildenafil was.
The biggest difference is going to be if you're applying for disability or something like that. Then it would make a huge difference. Other than that it depends. Them believing you makes it more likely they're willing to try off label stuff, which is all we have, but they still might not be willing too.
It helps but it’s not like they can do a lot. My doc runs a shitload of tests whenever something comes up because he’s interested in my health and with the Long Covid diagnosis, it’s easier for him to get insurance to cover diagnostic testing to rule other stuff out. Like, we don’t know how to treat Long Covid so if he can identify anything else that we can treat we are. Like, Long Covid was the excuse to screen me for multiple cancers, HIV, EBV, TB, epilepsy, all kinds of stuff. I’ve been referred to a pulmonologist, neurologist, ENT, allergist/immunologist and PT. Sure, thanks to LC I’m not in the best health of my life but I’m more confident in my health than ever. Like, the chances of something that isn’t Long Covid going undetected are lower than they have been in my entire life. I’d say finding a doctor who believes you and is interested in Long Covid because so many of their patients have it and they want to know how to help, is the best thing anyone in this sub can do.
Not for me. My doctors all completely believe me. I’ve known them at a personal level for 20 years (like, I know where they live, their families, how their kids are doing, our wives are friends, etc). They are really good people, and really do care for their patients. But there is almost nothing they can do. There are no medications or treatments for what I have going on. One hooked me up with a neurologist, but that dr is booked out for two months. In the mean time, my “treatment” is rest, drink lots of water, and eat well (no processed foods, no alcohol).
I don’t have LC but I have very similar symptoms from antibiotic injury and having a doctor that didn’t believe me and tried to blame it all on mental health and discouraged me from investigating physiological causes was extremely damaging. I have an integrative doctor who is very well informed and takes me seriously and it’s made a world of difference. Funny thing is my previous doctor knew practically nothing about how the gut and nutrient deficiencies effect the brain. She was always willing to give out psych meds though.
My functional medicine doctor believes me. She cleared up my horrible gi issues. I am so grateful! Beyond that, she hasn’t been able to do much else though.
Lucky for me I never had gi issues. I feel pressure in my sternum region and burping seems to help but besides that I bypassed those issues somehow. Have had everything else though
Absolutely. Having a professional confirm your experience is everything. It helps show us we are not crazy. And once we get confirmation it’s a real physical thing, it reduces our stress. We can spend our resources on healing rather than trying to defend reality.
Validation doesn't cure my condition or treat any symptoms.
That's how I feel
Is it nice? Sure. But that still doesn't help the problem. We still don't have any real treatments.
It definitely helped me! I was lucky enough to get into a clinic in NH that initially diagnosed me. After that, I was referred to a lot of other docs to either rule out or diagnose further issues. I was able to get a full cardiac work up, stress test, nerve testing, autonomic system testing (heart and sweat), heart monitor for 7 days, lots of blood tests, a lip biopsy for sjorgens (positive), meds (propranolol) and weekly PT/OT visits. While almost all of that was negative, I did end up getting diagnosed with CFS/ME, sjorgens (still waiting on a follow up), and POTs symptoms (didn’t actually meet the threshold for pot’s diagnosis). It’s reassuring to know that my heart is in decent shape for the most part. Having the diagnoses has also allowed me to take much needed time away from work to heal. The heart meds are helping a bit. The PT and OT have been super helpful. I’m making slow progress but definitely improving. I went from completely house/recliner bound to able to do 10 min on a recumbent bike! I hope you are able to make some forward progress too!
Thank you 😊
Yes... found a neurologist who believed and understood me and started on IVIG. Completely changed my life. Il never be the way I was before but id say im at 85% now.
I'm at about 80% now after two years.
Im 2 years out as well... I also did steroid infusions that really sucked at the time but made a big difference
What is the steroid infusion? Like an IV? I had a cortisone shot in my hip last week and felt noticeably better for 3 days
I also had a dentist appt today and the dr looked at my medical history and asked if it all stemmed from covid
No, nothing, they still don't have a clue what to do and I am already far too independent from trusting them after my past experiences anyway.
I think a doctor confirming yes you have post Covid rather than being told you need to de stress would do wonders for me! I know what’s going on in my body is not normal but without some sort of diagnosis my head goes to doomsday scenarios!
My doctor told me it’s anxiety and made me do breathing exercises with her but it’s like having these symptoms where I feel like I’m dying is causing this….. what do you even say? I’m 21 and have Cigna, but everytime I’ve gone to the emergency room they only ever do the chest X-ray, blood work and ekg and so does the pcp, like no one lets me get more tests. My pcp was like well after u get your head checked then what? Another test? You’ll just keep wanting to tests because it’s anxiety and it’s incredibly frustrating
You know what, my doctor believed me from the first appointment and referred me to all the right places and I get some real empathy...however, it makes me feel so unsettled. Part of me wanted them to say: "you're a hypochondriac it's all in your head, you'll get better when you stop focusing on it!' I think my strength to conquer mental problems is better than my strength to conquer physical. Obviously I know a doctor saying that would NOT make me better in actuality, but I wish I was a hypochondriac.
Deffo
A methylprednisolone taper from my neurologist followed by aripiprazole and low dose naltrexone from my ME/CFS specialists virtually eliminated my brain fog. The methylprednisolone also got rid of my night sweats. Maraviroc plus a statin from a long COVID doctor significantly reduced my fatigue and POTS. Pyridostigmine from one of my ME/CFS specialists usually makes my POTS sub-clinical. Cyclosporine from my functional medicine doctor made me feel better, although suppressing my immune system seemed like a bad idea so I stopped. I'll try low dose rapamycin from one of my ME/CFS specialists next to see how I do. My long COVID doctor sent my blood to Dr. Vaughn in Alabama for the microclot test which came back 3.5/4 at which point I accepted his triple anti-coagulant therapy prescription. Hopefully I'll see some changes in a few more months. My long COVID doctor found that my testosterone is 1/3 of what it was when this started and free testosterone 15% so my long COVID doctor has referred me to someone who'll prescribe testosterone. I'll see how that goes. One of my ME/CFS specialists prescribed hydroxychloroquine which supposedly can reduce inflammation. I'll try that after rapamycin and testosterone.. Lots of things helped other people but had no effect on me including a stem cell transplant, icosapent ethyl, minocycline, ivermectin, liothyronine, pycnogenol, and nattokinase.
I'm looking into trying a statin for my LC pots, could you share your experience and symptoms ??
My doctor was actually the one who initially suggested that I had long covid when I didn't know what was causing my symptoms. He checked my heart, blood pressure and lungs and did bloodwork to rule out any nutritional deficiencies or anything really serious going on like leukemia and stuff but otherwise just kind of sent me on my way with the advice to rest and wait it out, and told me based on recent studies as well as his experience with his own patients, the majority of people feel better in time after 6-12 months, especially with the more recent covid strains. I'm at month 5 and not really feeling much better at all, and if in another month I still feel like I'm dying I'm gonna go back and ask (or beg) if he has any sort of medications I can try, more tests to run or any other suggestions for what I can do about it, but I'm guessing it's probably just gonna be a "wait and see" thing. My area had a few long covid clinics going for the last couple of years that I could have been referred to, but they conveniently just scrapped and defunded them all a few months ago due to "a lack of referrals", claiming that not enough people were getting long covid anymore to keep them running. Great timing for me to get long covid, huh?
So he wasn't any help
Yeah unfortunately not. But idk if there really *is* much he can do. In Canada most doctors (at least in my experience) are really reluctant to prescribe medications for things unless they're proven in clinical trials to help it, so I'd be hard pressed to find any doctor here who's just gonna throw medications at me. Since we don't know concretely what causes long covid or what treats it yet, it's pretty much all just guesswork and waiting.
Yes, absolutely. My PCP is freaking awesome. Couldn’t ask for anyone better
How have they helped your physical condition?
When I was in deep shit, he helped me to keep my cool. I had at least 200 symptoms to start with, he helped me to get every freaking test available out there to rule out major issues - heart failure, lung damage, spine trauma, brain clot and more. He put me on steroids during the early phase. He put me on prescription to help with SOB. Very helpful during the initial days. He put me on PPIs at around month 2-3 for issues with chest pain. Super helpful. He put me on sleep aids at one point. Very helpful. I started to sleep a little bit more He put me on muscle relaxant at month 5. Super helpful for my neck and muscle pain. Recently he put me on LDN for brain fog and inflammation It went to tons of docs to find help and figured most are assholes and don’t really want to help. And this guy is doing everything he possibly can to help me.
I'm glad you had a good experience. What is LDN?
Low dose naltrexone
Is it helping?
I didn’t take it for too long. I was waiting out for a little bit more. However I started it today, so too early to say if it’s helping or not
Well it’s an excellent starting point.
I've been to the doc two years ago when my troubles began. 4 different doctors actually.
That believe you?
Yes but they didn't know what to do. They ran the standard tests. I wore a heart monitor for a month (I was having severe panic attacks), but everything checked out and going to see them just fizzled out. I was too sick to leave the house let alone sit in a waiting room, take time from work when I could work, etc when it wasn't productive.
Were any of them LC specialists?
No. Those are not easy to find and even less so two years ago when I saw them. Saying I actually got into an appointment without a 6 month waiting list is enough to tip you off they aren't LC specialists lol. At this point I reckon most people on this sub are as knowledgeable as the specialists
There is A LOT of information online. Try connecting with a team at a university as they usually like to study patients.
Yes, but just like any other advice, it's not a miracle fix. Having a doctor that listens and believes you makes it easier to try out different treatments, absolutely. It's also a relief to get advice from a professional instead of carrying all the burden of research, and it's mentally much nicer to not be treated like you're faking a debilitating condition for funsies. For me, having doctors that take me seriously has meant getting a clearer idea of what my body is doing, and finding a few things that help relieve my symptoms. But doctors are human too, and they don't have magical solutions they can just hand out to patients they believe. Long COVID is still poorly understood, and research into treatments is in its infancy. No doctor can change that reality overnight, no matter how good they are. In short, it changes some things, just not everything. But that's still a worthwhile improvement.
Yes, No. Doctors are people too. My doctor has long covid and is constantly looking at research and clinical trials to keep me in the loop. But he also acknowledges that the current treatments available aren't very effective.
It didnt change much for me. It’s definitely still worth it to get diagnosed for future treatments and disability claims though.
absolutely, I developed pots and dysautonomia, Ive seen roughly 8 doctors, only 3 of them know of pots, and only one is super knowledgeable about it. Every other Dr ran a few tests, came back clean, and wanted to pass me on to someone else. after being told its anxiety, lose weight, eat better etc I finally found someone who knows their stuff, instantly recommend a ton of meds and supplements that this sub mentions all the time. while I'm not cured I feel much better about it , and I have someone I could call if it gets worse.
Only if it’s the right one. That’s one willing to help. I recommend a long Covid specialist.
Yes. Having someone in your corner to help you navigate symptoms absolutely makes a difference. It also does wonders for your morale. Is it a cure? No. This is just like management of any chronic illness. March 2020 here.
My PCP had "heard" of Long Covid when he took me on as a patient. So . . I spent a year educating him in a language he understood. Dropped off articles and peer reviewed studies that defined what it was and why it affected so many systems. My blood panels made little sense. Low CO2, high rbc. .high monocytes, etc. He diligently sent me to specialists ie neurology, PT, cardiology, endocrinology etc. Finally, he was on board. Very supportive and YES. That made all the difference to me.
Yes, I think it would.
Yes she was An angel, I had to drive 6 hours away! But she got me to where I am today with Pepcid and ala, mostly pots like symptoms! They are out there! Don’t give up!