I feel like I’m slowly dying and nobody is helping

Posted by seekingsupport @seekingsupport, Feb 19, 2024

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.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

friedrich | @friedrich | Jan 15, 2025

In reply to @jeindc "@dloos I'm glad and sad you're still here. I asked both audiologists if my hearing could..." + (show)

To jeindc —

Thank you for the link to the article about many physicians:
(a) being unaware that a patient is presenting with symptoms of Covid, and
(b) not knowing what appropriate next steps to take to secure an accurate diagnosis and proper initial treatments.

The article is enlightening for me, because I’ve never encountered those obstacles to proper care. That’s Because I live near four major academic medical centers, with a wide array of medical specialists available, and have excellent medical insurance to cover my access to them.

Thank you again for the link!

— friedrich

friedrich | @friedrich | Jan 15, 2025

In reply to @repl "Hi Dloos, Gosh, I’m sorry to hear about things getting worse with the flu. And how..." + (show)

@repl

Hi Dloos,
Gosh, I’m sorry to hear about things getting worse with the flu. And how expensive paxlovid is!! OUCH!

There was government funding for free Paxlovid, but this has run out now. Unfortunately.

There’s been a lot of new research and understanding about Long Covid. Here’s an article summarizing all the potential issues that should be looked into and then there’s also treatment options mentioned for each.
https://www.cell.com/action/showPdf
Also, Dr Bruce Patterson, MD, virologist out of Stanford asserts that LC is from the spike protein not being cleared in non classical monocytes, causing them to NOT die off in their usual timeframe of a few dats, but become immortal “zombie” and start attacking the endothelial lining of all blood vessels. This is the upstream causation of all the downstream issues LC sufferers are having.

There’s an actual test that measures if you have these zombie monocytes and he has a treatment protocol! I’ve done the test and it shows positive spike proteins.

Of note: your doctors need to make sure there’s no reactivation of other viruses prior to using his treatment protocol, otherwise it can make your other virus reactivation worse. My infectious disease specialist for Long Covid tested me for EBV, CMV,VZV, Herpes and I’m negative for all of them so will be starting the protocol soon 🙏🏻

The challenge is that I have uncontrolled SIBO/SIFO/IMO (which gut related issues are also common with LC BECAUSE of these spike proteins causing inflammation in the gut causing poor motility and dysbiosis) However, I need to find some stability before starting the protocol even though the protocol is needed to help my dysbiosis…

Bit of a catch 22, but will figure it out!

Paxlovid is recommended for those of us with LC, and his protocol if get Covid again.

It’s not surprising you feel worse after the flu, it’s just adding another thing to fight and cause more inflammation and attack on your immune and nervous system.

I know I feel waaay worse whenever I’ve been sick! Dr Patterson said that getting rid of the spike proteins help your immune system finally find it’s regulation again. Right now anyone having the spike proteins in their monocytes disrupts their entire immune system.

He’s finally gotten approval to conduct a trial showing his results. But he has been doing case studies showing that his protocol clears the spike proteins.

His protocol is atorvastatin and maravoric. If interested here’s a link for the test, my ID doc says just the spike protein test is most accurate, then you can schedule a call with Dr Patterson or one of his doctors to go over your results. He’ll write up a plan for his protocol and you give to your doctor to order the medication and follow you and do labs monitoring your liver etc. Then you can reschedule another follow up with him in 6 weeks once on his protocol as well.

Here’s the test link:
https://theradiancediagnostics.com/order-test/covid-long-haulers-s1-immune-subset-panel/
Hope this is helpful!

Jump to this post

To repl —

Thank you for providing these links to research and services provided by Dr. Patterson, which focus on identifying the specific viruses affecting a person, and then selecting treatments suitable to those specific viruses.

I, myself, would present the information about these services to my doctors to review, and only pay for the services if my doctors recommended doing so.

— friedrich

rickyberry24 | @rickyberry24 | 1 day ago

In reply to @mbryant1380 "You are absolutely NOT ALONE! Your story (with countless others) is similar to mine. Years of..." + (show)

@mbryant1380 on this right now. I can’t even sleep

hicopd | @hicopd | 1 hour ago

If there are any POTS cardiologists in your area, it would be excellent if you could be seen by one (or more). I am taking Midodrine for my POTS. My relative takes that as well as another medication to keep her POTS (which is more severe than mine) under control. Some patients even need infusions of saline or B12 or other things to keep going. Equilibrant is a supplement made and sold in Los Angeles, which also helps some patients. More information about it is at equilibranthealth.com.
My relative was waitlisted at the Stanford CFS/Long Covid Clinic for 4 years before she was able to be seen. They've helped her some but she still struggles and has been unable to hold any job or reliably know whether she will be vertical or horizontal. Stanford has been treating her for 10 years! I hope you are able to get the assistance and treatment you need. There is so much that is NOT properly understood about CFS and long covid (there appears to be a lot of overlap).

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