Long Term Covid articles - MUST READS

Thank you so much for this. All of this makes so much sense and I see a lot of these symptoms in myself and others. There is hope for us long haulers. Praying much & hugs....

Thank you for sharing this.
Consider finding a doctor on line to see via video who treats post COVID syndrome. There are many well qualified ones who have a mission to fill the treatment gap. Praying for you.

It’s too late? I don’t want to think that way. I’m here for you. I’m suffering too. I’ve lost a piece of myself so I have to find a way to save what I have left. I love everyone and especially the ones suffering from long covid. God be with you all

I know I said, "its' too late for me," but that's due in part to my current health and long term Covid ravaging my body, creating numerous symptoms, being alone and in many aspects due to having no acknowledgement, support or help from any and all doctors. I've branded as this just being "anxiety." So, if and when I see a new doctor, hoping they can help, my chart is red flagged as Dx for anxiety and also jumping around seeing numerous doctors. The last nurse told me as such, so they rush me off - even at 89 lbs. If they were in my shoes and going this, you can bet your bottom dollar they would be trying to find a doctor to help.

When I was in the hospital, they dismissed me the next day telling me to follow with PCP, who is horrible, I begged for them to help with no luck. When they wanted to give me blood thinners (can you imagine!) because they said all patients are provided this drug because of being in bed, I refused and said I will find the strength get up and walk around. They looked at that as me wanting to walk off the calories! I didn't need to be on blood thinners.

I keep a food diary since they don't believe I eat every hour to try and gain weight, I even brought in a friend who told the doctor how much I eat, they don't' believe me and said so, even though it was documented in the hospital everything I ate. The answer from the GI I saw due to my concern with the weight loss, I need a feeding tube. What they need to do is find out "why" I'm losing the weight and not absorbing my nutrients, especially given the extreme pain in my abdomen. Several days ago, I was awakened during the night with excruciating pain in my abdomen and there was nothing I could do. If I went to ER, they'll send me home, even though I have a Inguinal hernia. I now have low B-12, low ferritin, low zinc, chalazion that developed and became infected, requiring two surgeries, etc and they don't care. When I try so hard to tell them "anxiety" wouldn't cause the above mentioned, etc they ignore me.

I so badly want to post my plea for anyone on this forum who lives in Wisconsin to please refer me to a doctor who knows about long term covid and can help. I don't know where else to turn 🙁

Love & Hugs to all for your true compassion. I pray our Dear Lord to help us all during this difficult time.

I pray every day for our Dear Lord to hear my prayers and help me.

@rsfcowgirl,
With all due respect, there is no one. I've been fighting this for 3 yrs now, seen so many doctors all to no avail. If you are able to find someone I can reach out to, please, please let me know. Send me a PM if you wish.

Hugs

Hi. I hear your desperation and am sad for you. I also understand how patients can be unfairly negatively characterized in medical records and that labeling follows them. And it's very hard to find a Covid-long haul Dr anywhere.
Let me make some suggestions that you can try to do tomorrow. One is to go to Behavioral Health and actually find a provider to help you with anxiety and distress. Anxiety accompanies Long COVID and it would likely help you where you're at right now. In my life, anxiety is a nightmare to endure and I get it under control ASAP. Next, you can write a brief note for your medical records that would go into your medical records. You can summarize your health pre-Covid and then provide the approx date of your COVID infection. You can then very simply state you have declined in health consistently since then. List your possibly directly related problems, such weight loss with sufficient intake. You can leave out unrelated medical events such as an infection from a blocked eye gland. Focus on your serious medical decline. Indicate that you are repeatedly diagnosed with anxiety but yet are not being treated for it and you do not believe anxiety is the origin of your physical health problems. State that you believe you have a malabsorption syndrome. I would indicate that you are open to treatment for anxiety along with investigation and treatment for Post COVID related decline. State that your decline is extreme and must be reversed promptly. Have that attached to your electronic medical records. You do this by submitting this to your last doctor or ER. Then also send it to your insurance company and follow up in one week asking for referrals and guidance from them. They have in-house services and referrals for PCPs. They don't have specialist in Post COVID but you need to be anchored to a doctor, bc of your described poor physical condition. You can be anchored in both Behavioral Health and General Medicine so that you at least have some connection with in- person providers. As this is coming together, you and others can search out Post COVID doctors for you.
As for your rejection of anti-coagulants (with outrage,) FYI: it is exactly as you were told. Further, many Post Covid providers use mild, low dose anticoagulation for short term treatment in some post COVID treatment plans.
Think a little about what you want a doctor to do for you. Narrow your goals for medical care down to 2 specific problems. Then raise these at your first appointments. I don't think on line medical is safe for you in your frail state. I believe my advice is a reasonable approach for you and would produce better results than you have received to date.
But let's see what the rest of the Forum thinks. There's much wisdom here in numbers and this is a moderated forum. This advice is my personal opinion. I offer it as only that, along with my best wishes and prayers for your recovery. Keep hope + faith in your heart. Each new day grants a new beginning.

Have you had your blood tested for microclots? https://medhelpclinics.com/service/long-covid-clinic

I’ll pray for you. I do believe in God and I know He will always fight for the righteous. In other religions they call it karma. You will be vindicated if you are genuine and I know you are. So be patient even though it’s difficult. Honestly there’s not much they can do for us it seems. Have to wait for another wave to come through a few times before things really change and they can get some better data. Honestly they seem to be making greater strides in Europe and that’s the case most of the time with new treatments. Hang in there and try to be positive. Positivity heals and that’s a fact.

Never Never give up, i live in a rural area where ..well..Drs hear are behind the times, i think any of the Drs that do know anything about covid and long covid are still overwhelmed on how to solve all these different problems...i am three years and eight months into this stinking covid thing, believe me, i can come up with a name for it we could all agree on, anyway, it has really messed up my life too and i'm fighting with everything i have, i soooo refuse to let this thing win. i know the we can beat this..prayers to you and all whom are going through this and hugs too......

I'm trying, I really am. I've been such a fighter for 3 yrs. I had no idea it would get this bad and more than 30+ unbearable symptoms.

Thanks to that horrible doctor who told me I need to do b-12 shots and iron infusions (even though my labs were at the bottom range of normal and my iron level was great) it set my body on fire! Not only am I suffering from all the horrific 30+ symptoms mentioned earlier and other posts, and as we all can relate to, Covid brings on newer and even worse symptoms daily. The iron infusion made it really angry! It caused a severe reaction, turning my feet bright red/blue-ish in color and severe burning pain, needles & pins sensation, and now I have developed a rash and sore burning sore spots throughout my body and nothing I can put on it or take will relieve the pain - it's unbearable! The new spots appeared on my right arm and wrists and today on my left foot and on fire! I can't take this.

I don't see how I can continue. It's now 12:20am, I haven't slept for days and now with this rash and pain it makes it impossible to sleep. I know what the morning around 4am and my body will be shocked by a jolt with internal trembling and extreme pain. And like every morning I force myself to get up, but I basically pace around.

In addition, at least the last 2 years I had a great appetite and stomach was fine, even though I weighed 90 lbs, but as of two days ago, my stomach is in terrible pain and anything I eat causes it to feel like I have an alien in there. Given I'm now down to 90 lbs I don't see how I can survive.

As I type, the top of my foot with the rash burns so bad and it's spreading to other parts of my body. I wish I never got the iron infusion! I can also feel it starting to develope on my arm and neck. Please pray for me during this very difficult time and for all others suffering.

Adding fuel to fire (literally) is not even having a doctor who can help. Going to the ER will serve no purpose since they don't recognize or understand long term covid.

I get so angry the wonderful, happy and active life I had is gone. How could they have created such a horrible virus (weapon). Why are others who had Covid, got through it fine and we are suffering like this?

Hugs