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I feel like I’m slowly dying and nobody is helping
I’m at a complete loss. I feel like this is my one last ditch effort at reaching out for support. I only had Covid once back in the summer of ‘22. I was very ill for over 6 weeks and it affected my heart for about a month afterwards with pericarditis and tachycardia. I thought I made a full recovery because I was completely symptom free for over a YEAR. This past August I moved and a week afterwards I became ill again, (no covid but a myriad of other new symptoms including the return of heart issues). Since then I have progressively gotten worse. I’ve had every test done under the sun including an endoscopy, colonoscopy, MRI of my brain, countless EKG’s, tons and tons of bloodwork…I could write three paragraphs on all of the doctors and tests and debilitating symptoms. I was diagnosed with POTS in October. I have lost over 50 pounds and cannot seem to gain weight and I am continuing to lose weight. Nobody has answers except to take a beta blocker which lowers my already too low blood pressure and makes me feel even worse. I’ve been to the ER almost 10 times. I feel like everyone thinks this is psychological and they continue to gaslight me. Why are there zero resources for people dealing with this? I’ve been unable to work now for over 6 months. I’m living alone and it’s becoming hard for me to even care for myself. Where is the help? Why have we been forgotten? I have become suicidal every day because of how ill I am without any support. There is only ONE Post Covid Rehabilitation Clinic here in the entire state of Washington and I’m not scheduled to see someone until June! My heart feels like it’s failing and getting worse by the day. I don’t think I’ll be alive by June. Can anyone help me? I’ve joined the Dysautonomia International group but everyone in there has at least someone who is supporting them. My family has been awful, making it out to be severe depression or that I’m exaggerating to get attention since all of the tests come back negative. They tell me to drink more water, eat more salt and exercise. I went to the gym every day following the POTS protocol back in November and now my heart is much much worse. Someone please help me.
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@pattig09 I was doing most of the supplements targeting my nervous system and cell function.Then I added a few as i went along.Had to take lorazapam on and off for a while my anxiety was off the chart.Still worked,but had to call in or leave work because it was just too much dealing with people at a cash register all night.WAY better now.Cut back on some of the supplements.I really think Dr Paul is a great person and intelligent Doctor.I didn't listen to anyone else after i found his channel(s).So glad you're doing well...and you are.Whatever you're doing,keep it going.God Bless.
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2 Reactions@suecedar1028 As you can see, there are many of us still dealing with this brutal virus. I am going on 4 years. I did not get the vaccine. I still have fatigue, post-exertion malaise, brain fog, joint pain, depression, GI issues...depends on the day. I understand the loneliness and isolation that comes with this. I was so outgoing, worked two jobs at one point and ran every morning. Now, I am in school, online, and even doing my assignments causes fatigue. I miss being around people and yet, there is a part of me that does not want to be. I get tired of explaining why I feel bad. I get tired of people not knowing what the hell I am talking about and saying, "Long COVID? What is that?" I do what I can to advocate. I also try and do my own research into what the studies are saying. You are not alone in this, at least on this platform.
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1 Reaction@suecedar1028 Reactivation of dormant viruses is something I have found to be one of the symptoms of LC. I had Epstein Barr Virus reactivated and Parvo (I fostered dogs for several years). I was tested for Lyme, HIV, RA, Lupus and all the others. I was told I had RA. I had blood work done several months ago and the RA IgG was no longer there. I did not test positive for any of the others...This virus mimics other autoimmune diseases. That is what I have found.
I used to run every morning with my dog. I was in the best shape I have ever been in. Now, I am in the worst shape I have ever been and I am a recovering alcoholic, so when I stopped drinking, I was in pretty bad shape. There are mornings, now, when I wake up and feel terrible, worse than a hangover.
It is such a brutal virus. I try to think of what I am grateful for and that can lift me up, for a little while anyway. I also understand the anxiety and depression. I take meds for depression now. This virus does affect the whole body. I am so hopeful that there will be a breakthrough soon. Hang in there.
@truwomandi Have you tried just plain saline sinus spray? I have never used a neti pot. Fear for some reason, but saline spray helps.
@oly78 I had the goo and it was sticky, but mine was really bad with infection from the spike proteins so it was yellow. There were several times when I flushed with the Navage that long yellow tubes would be released into the container. When I would watch them, they 'moved'. It was like the twilight zone to see this stuff coming from my nose as I had NEVER had even a sinus cold in my life. I had to go through 4 ENTs before I found the ONE that heard me and took me on as a patient. He knew how to deal with COVID in the nose. See if you can find an ENT in your area that deals mostly with micro nasal surgery. It is robotic and it likely will be the surgery that can stop the drainage. My turbinate on both sides were totally clogged shut. He cleared with a laser. Then he looked at the drainage for the Sphenoid but this was the dangerous part of the procedure since it sits right on the brain. It was clogged shut so he did a slight enlargement with the laser and minor flushing so the goo could be released. And oh did it start flowing. Micro surgery does not 'scrape' as this can cause more damage and even permanent damage. There was laser trimming on the main left and right maxillary sinus cavities to make sure the drain was open and light saline flushing of the yellow goo from each side. Think of these openings in the sinus as a door that opens to release and then closes. Mine had been jammed shut. I had a minor nose injury so while he was there he straightened my septum as one side seemed to be holding pressure on the natural drainage. That was the beginning of stopping the phlegm. But it took some time with hourly saline flushing when I returned home. Be ready he said as when you use the blub of saline water to flush, this is going to look like a major CSI crime scene. He wasn't wrong there! It has been a year and no more phlegm, no headaches, no yellow drainage. I flush every morning and every night now to keep things clear. I randomly pull out the old Covid test strip every few months to make sure the clear drainage does not pop positive!
@suecedar1028 I might suggest you talk to doctor about 'doubling up' on the probiotics during this period with the antibiotics to keep your gut healthy. Perhaps drinking a Yacult (liquid high probiotic yogurst) each morning!
@diverdown1 Yes, I have used a saline nasal spray. That is exactly what a neti pot is. water and salt. Try it, It is much less expensive than a bottle of the same stuff.
@pattig09 Hummm, that is very interesting… Thank you for sharing your story. With the turbinates closed shut and all of the things done during the micro surgery procedure, had you ever had a CT scan taken, prior?
I have had two, and they didn’t show anything “remarkable.”