Please allow me to {{{scream}}} and yes, I'm crying

Also look into the Institute for functional medicine. Just google it and read about it. I, myself, have not gone to one, but my friend’s young adults have and she was very pleased with the care they received.

Hi @summerof42. I dont know your healthcare system, by law they must complete records correction request with your documentation. Perhaps your request was not routed to appropriate area. A good start is the systems member advocate/social worker who can personally direct your needs. If that not beneficial, then a respectful letter to the systems medical director should allow direction to the correcting process. If you have done these steps and they are refusing, then I would contact a medical injury attorney who will take your case with no upfront costs. Hope this gives a avenue of success on your healing journey🌈

Hi @joansmurphy. I did not see your reply until after mine. Want to say thank you so much for sharing your ICU nurse experience which elicits the medical help and also reminds all of the immense caring most healthcare professionals have as I personally witnessed running multi specialty medical practices over 20 yrs. This is definitely the most trying time in healthcare and hopeful it will quickly produce an efficient model for all. 🌈

Couldn't agree more. Mine asked me what I thought we should do next (One year into long Covid) I suggested maybe its time to look at the critical organs that are known to be negatively affected by Covid - I told him that since I had been living with stroke - heart attack symptoms for roughly a year - maybe we should take a closer look. He agreed and ordered a CT Scan of my lungs and an echocardiogram of my heart before I left the introductory session. His comment was those organs can kill you quickly so lets not waste time on checking them out. The only other diagnosis effort prior to that was pysch test to see why I was screaming at my doctors and to check my inter ear for dizziness. Good news I have a great inter ear and neuro-pysc came back as average - who knows how smart I was before brain fog and Covid.

Saw a rheumatologist with no luck.

It just keeps getting much worse. I pray, ask for God's strength ad help, but I can't go on much longer and need everyone's prayers.

Woke with throat hurting and especially swallowing. Went to UC prayed it wasn't Covid, again. Luckily tested negative. However, today I looked in the back of my throat and there is a sore, with a white/cream colored spot in the center by my tonsils.

Also, went for my first iron infusion today since I was told I have low B-12 and ferritin. I disagreed with doctor since they were in low, normal range and also when my numbers were the same or even lower years ago and I felt great. He disagreed.

Iron infusion was a nightmare! After the 2 hrs of infusion they make you wait around for any reaction. Well, my ankles started to really burn and felt like I was getting poked with needles, it hurt so bad AND they turned bright/purple-ish in colored when standing. Doc came in and gave me Benadryl and Tylenol. So I went from feeling really ill with LT Covid to feeling even worse!

Doctor said everyone acts differently to iron infusions and it can happen, while he steps out the door taking a call and kept me waiting so scared for 30 min.

Now, 4 hrs later I also have a sore, red bump/rash on my arm and feel so ill along with strong stomach pain and diarrhea.

I also tried to warn him that I have Long Term Covid and our bodies are dealing with a messed up system to include inflammation and blood issues, but he just ignored me.

Before leaving he said in regards to Covid, who I really should see is an infectious disease specialist or go to a Long Term Covid Care Clinic. I told him I have been trying to do so for months and getting nowhere. They wont let you in or help in any way, or don't call you back.

I can't go to the ER, they just send me home even though I'm down to 90 lbs.

I love you all. . . hugs

Hoping as more women go to medical school, things will improve. I’m mentoring 2 medical students & they seem’ so far, to have different attitudes than those in the past. Fingers crossed.

Well, well, well. I wish I could say that I was surprised, but I am not. I have had long COVID since June 2021. I was severely ill at the beginning. I ended up with congestive heart failure, scaring in 45% of my lungs, weakened pancreas, half working kidneys and liver. My esophagus was immobilized from the COVID as well. I had post nasal drip for 1.5 years, which lead to my vocal chords becoming swollen. And of course, there was the ever present COVID cough and fatigue. I am not into my 3rd year post-COVID and I have seen alot in that time frame. I hate to see you subjected to such unprofessionalism but let me tell you that the doctor you saw is one of a million like him. But there is hope. First, you need to see a new doctor. The right doctor makes all the difference in the world.
Please stay positive. By working one issue at a time slowly you will get better. I got COVID again in March of this year, and surprisingly while my doctors were treating that version, i was told to take a non-expectorant decongestant. Sure enough, that OTC drug opened my sinuses way up in the cavity, and out came all this crud of a infection that others had previously said did not exist! Once that infection was gone, a year and half of post nasal drip went away. That stopped the COVID cough which then stopped annoying my vocal chords, which then allowed them to shrink back to normal. See the chain reaction? Something so minor (according to some doctors) as post-nasal drip cleared up a major cough and majorly swollen vocal chords. Previous doctors had said there was no way that post-nasal drip could cause the problems.
OK, so this leads me to my overall statement. Most of the doctors treating patients never saw COVID patients during the pandemic and most will not admit that post-COVID syndrome is out of their league.
In the spring of 2022 the AMA officially declared POST-COVID Syndrome (also known as long haul COVID) as its own disease. Yeah!!!! In declaring this its own thing, they said that long haul did not just involve one organ but almost all the organs, and the interrelationships of those issues needed to be treated in a pyramid type scheme or recognizing that all the symptoms had multiple sources. This is the start of their understanding.

I have found now that with the cough gone and the vocal chords back in order I am functioning much better since I can swallow. Every day I can tell that my symptoms are better and I see hope. Some things will never change and I will just have to learn to live with the issues. For instance, I am very fortunate that my lungs, while damaged, do still produce 100% of the air volume I need to breathe. I will never get the rest of my lungs back, but I move forward trying to ensure that I do nothing that will impact the rest of the lungs. I also will be forever fatigued. But there again I get alittle better every day. I sleep better during the night now, and this allows shorter naps in the day. I rejoice in the small things. I cannot look at the totally of my life. I recognize that the life I lived before COVID will never return. But the joy and love I experience every day still makes life worth living. This is what I focus on. I have very good doctors now and progress IS being made, even if it is slow.

I have been writing on this blog since 2021 when I first came out of the hospital. I saw that I was repeating myself often to different questions. Because of this, I have started my own blog where I discuss my post-COVID journey, and I write about my adventures with the medical establishment! Yes, the adventures can seem like a nightmare, but I choose to stay positive and say that sometimes its a rainy day trip and maybe I can enjoy something to drink on the veranda! Tomorow will be a better day.

To read my journey, pop over to https://seasons-postcovidjourney.com

In my journey, I write almost weekly. So far, I have covered fatigue, anxiety, post -nasal drips and of course HOW TO FIND THE RIGHT DOCTOR!!! I also add links to medical journal articles and post that I find on the topic.

Remember that you are not alone in this journey. There are many of us daily that are pushing the medical establishment to get their act together. Its places like this mayo blog that have been the impetus for the health community to start being serious about this issue. Don't think that what you write is not read or impactful. You would be surprised how many people read this blog and it is influencing the community. This is why we have started to see so many long haul clinics opening up. This is a journey for the medical community as well.
COVID-19 blew up the medical establishment in the field of knowledge of how to treat the body, and what caused the body to act the way it does. Never before had such a disease caused such rampant destruction. Now there is a lot of pressure from insurance companies and corporate America to get the workers back to work and get them healthy. Why? Its costing them money. So, I know this is hard, but stay hopeful that one day, we will be the reason that medical care turned a pivotal point in the right direction.

I have had an autoimmune disease for about thirty years and long Covid just sounds like the crazy symptoms I have had along the way. Besides diet and regular exercise (stretching, water, isometric, walking and PT), chasing the individual symptoms is it. Avoid processed foods in your diet; whole wheat, white potatoes and tomatoes are general intolerances that can affect how you feel. Alcohol is also a culprit of feeling bad. Stay hydrated, keep up electrolytes. I am on D3, sublingual B-12 for fog and pain and I take magnesium here and there. I use topicals (CBD, pain creams, ice/heat and splints for joint pain, too. Terry Wahls has some good information on autoimmune, but I cannot do her diet. AIP, Mediterranean are good resources for recipe recommendations: I do eat very simply these days. My insurance allows me to go to specialists without referrals and gastroenterologist has been helpful and if you find a DO doctor out there, it might be a good choice. Naturalistic/holistic can be an expensive road, and you may end up with a stack of supplements that you never take; avoid purchasing the next great thing for this. Do not get upset about lack of diagnoses, get help for the part that bothers you. Pain clinics also offer options.

I think I'd go to an ophthalmologist for any infection of the eye. Ear/Nose/Throat Dr for those areas.