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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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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?pii=S0092-8674%2824%2900886-9
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!
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3 ReactionsThank you so much. This sounds promising. I do wonder though if the damage done is just damage done. For instance I doubt I’ll have hearing ever returning no matter the treatment.
I will discuss this info with my doctor.
Thanks for your quick reply.
Good luck to you and please let me know how you respond to treatment.
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1 ReactionI sent your links to my Integrative doctor. He said that the protocol had been tried at the clinic and the results were disappointing.
I was very disappointed of course.
I see him again in March and may ask to try anyway. He is quite open to trying various treatments.
Please let me know how you do.
It seems there is such a broad variance to what works for people.
I am beyond discouraged after being so ill for three years.
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2 ReactionsI hear you about being disappointed after being sick for frickin years!
Questions I have for your integrative medicine doc about it not working are:
Were spike proteins labs redone after using the atorvastatin/maravoric treatment protocol?
Were pts first assessed and then treated for reactivations (if these were positive) prior to starting protocol?
How was it concluded that it didn’t work? And was it the original protocol with different medication (Dr Patterson had different medications originally as a trial that helped some but not significantly until he found the atorvastatin/maravoric protocol)
My ID doc said she used his protocol early on with all of her patients and got mixed results. She said the only truly accurate lab was the one for the spike protein in monocytes and that there was a different medicine used as well.
Overall, yeah, it’s a crap shoot I’m sure. But one I’m willing to try because what if it works!?! I’d be so stoked to have my life back!!
I’m starting super slow with it all because I don’t tolerate medication well with my MCAS, and gut issues. I tend to start by taking a fraction of a new medication and slowly titrate up if no reactions.
I’m going to start the maravoric first next week and see how it goes, fingers crossed! 🤞🏼 🙏🏻
And in response to your hearing loss, it could be permanent but possibly not? Depending on how long it’s been happening…if the right medication that eradicates the cause can be found and taken…
Hopefully it’s this protocol? 🙏🏻
I’ll keep you posted!
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2 ReactionsAll good questions to ask when I go for my next appointment.
I wish you the best of luck and hope to hear a positive result!
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3 Reactions@lkirnbauer , did you not have hypothyroidism before COVID? Do they docs think there is any connection? Did they look at any other causes from COVID or just decide that "AH HA here's an answer and we'll stop"? Do you have other symptoms? Thanks.
JE
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2 Reactions@dloos I'm glad and sad you're still here. I asked both audiologists if my hearing could return before buying hearing aids. They said not. Of course hearing loss from COVID is new to everyone so .. they don't really know. With each new symptom (I tested positive the first of April 2023 and was positive for 10 days feeling like a bad flu had hit) and reading that new symptoms can appear 2-3 years later -- and since it's been 5, they don't really know - I wonder what will become of us.
Article I posted in the group elsewhere and here for interest in yet another 'treatment.' https://time.com/7206080/long-covid-psychiatric-wards/
Here's to us!
JE
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2 ReactionsDo you mind if I ask where your long haul Covid therapy is and what all is offered?
I go to Johns Hopkins in Baltimore. I am a patient at their POTS/Long COVID clinic. I also have a rheumatologist who has been wonderful. That doctor's office is in Harrisonburg, VA. Unfortunately, all of my issues caused by long COVID are incurable. I have had some therapy and take medications to help me control the symptoms. I take gabapentin and cymbalta for the nervous system issues; pain, numbness & tingling, etc. I have GI issues, GERD - Acid reflux is horrific. I take Dexilant for that but still end up with sores inside my mouth. It is miserable.
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2 ReactionsI was diagnosed in November of 2022 with Hashimoto’s and Hypothyroidism and caught Covid in December of 2022. I wasn’t aware, when I was diagnosed, that I had them. I had 18” of my colon removed due to severe diverticulitis in April of 2022, then diagnosed with Hashimoto’s/Hypothyroidism in November of 2022 and caught Covid in December of 2022. I also lost my taste and smell 2 days into Covid and still don’t have that back. Needless to say, it’s been a bad couple of years for me. I am doing my own research on regaining my taste and smell and so far I’ve had 7 Stellate Ganglion Block injections, that aren’t working for taste and smell, but have taken away my anxiety somewhat. I will continue to have them because they bring me HOPE!
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