Long Covid and Doxycycline: Inflammation Theory

Posted by Ms. Mac @donnamac, Mar 13 8:45am

I was given doxycycline and azithromycin last November for Covid/Pneumonia. I was quite ill with sore throat, cough, fever etc. I was also given Paxlovid. A week later I felt much better and then a week after that I felt worse. I stopped the doxycycline after 20 days due to stomach upset, but did take the full course of other drugs. I now suffer from heart palpitations all the time, extreme fatigue, in and out sense of smell and taste, brain fog, and muscle pain. My energy is not even half of what I used to enjoy.
I decided to take the rest of the doxycycline which is about 10 tablets, one each day. Doxy has been proven to help with inflammation and my primary doc said the virus causes inflammation and that is what I am suffering from based on my symptoms. My primary doc who did nothing but talk to me, my cardiologist who tested me with a 7 day Zio heart monitor, Urgent Care team when I went back for a final x-ray, all had this advice: "wait it out, it could take two months or two years." I am a 75 year old female college professor and I am not going to sit around and watch muscle loss, suffer exhaustion, have poor memory, etc. without trying SOMETHING. So, I am taking the remainder of the Doxy that was prescribed for me in November 2023. I am taking it for the anti-inflammatory benefits. Has anyone else tried Doxycycline for long Covid symptoms?

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

I have been using it for 2 years on and off to treat my long covid symptoms. I feel like I can’t live without it for I fear what I will face without them. It took me a long time to figure out why this medication works. I even spoke to MS patients who use it to manage their symptoms. Every time I have gotten off them my symptoms return. Please I ask the medical community to look into this drug and find a way to recreate it with minimal side effects because there’s something to this.

REPLY
@repl

I hear you about NOT sitting around waiting for symptoms to improve!! I’m a doctor of physical therapy and the blasé attitudes with lack of searching outside the box for solutions by doctors is reprehensible. I’m personally sick of feeling shamed for their lack of understanding, interest, imagination, and knowledge of post viral conditions!

I had Covid back at end of 2019 in Europe. And have had a myriad of symptoms that keep popping up over the years. Sure, the shortness of breath got better finally after 2 years, but then 2 years later, I had severe allergic reactions (anaphylactic episodes for 9 months). Last year, was the worst of all with severe heart palpitations, weakness and shakiness and complete inability to do anything, showering takes all day to recover from.

And I totally agree that inflammation is a major issue with LC. My dermatologist recommended 50mg/day for anti inflammatory effects. (This is low enough dose that it isn’t antimicrobial).

However, there’s more to it than anti inflammatory. Like what’s the upstream cause of it? This is where I feel real treatment will occur.

I found through a random turn of events that paxlovid actually helped me long term (6 months), and then cipro along with paxlovid was even better… but then got off both and everything returned with a vengeance.

I’m finally seeing an infectious disease specialist who has been treating chronic illness for decades (which most practitioners have no experience with and oftentimes downplay that chronic illnesses even exist (most chalk these up to mental issues) think CFS, fibromyalgia, etc). My ID specializes in LC too.

She’s said most LC patients have some kind of underlying illness causing LC. Like chronic undiagnosed Lymes, Bartonella, or a reactivation of EBV, CMV, etc. I’m being tested now for all of them.

My hope is that there’s some kind of antimicrobial cocktail that will kill everything off and my life will return!

It seems possible since the antivirals along with antibiotic really helped me.

I just couldn’t stay on paxlovid any longer as it was causing GI distress and I got diverticulitis (which my doc says I’m too young to have). Being off of the Paxlovid has helped my GI. Just the rest of my symptoms are bad again 🙁

Most people who are recovering from Covid do take a while before things return to normal and then they’re fine. My dermatologist said she was bad for 4 months then has been back to normal since.

Then there are those like me who never fully recover after years. This is where finding the underlying causes are imperative for finding cures.

Medicine focuses mainly on symptom management that are downstream issues. I want the upstream cause addressed. And I hope to find it BEFORE it causes autoimmune disease! ( which a lot of chronic viral or bacterial infections cause - epigenetics of viral exposure turning on full autoimmune dysfunction which attacks the body, a.k.a. Autoimmune disease)

I believe the healthcare world is needing a BIG wake up call that chronic illnesses need to be addressed and treated early on. No more sticking their heads in the sand saying people “get over” things after someone has an illness (Covid, chickpox, mono, etc) or insect bite that goes away initially ignoring that it can come back later.

Finding the right practitioners who actually give a shhhh, you know the ending, is where real solutions will come. As well as someone who has knowledge and understanding of chronic diseases.

Sorry for my long rant! Lol

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Your comments make so much sense. I had Lyme Disease in 2016 and get flare ups off and on. I also have to carry an Epipen because I have Alpha Gal and react to mammal ingredients and fumes. I am still on Doxy. No stomach issues, but my PVCS have not gone away...although somewhat better. I added CQ10 because I am taking a statin and for a short time (3 days) my PACs and PVCs were gone. Now they aren't. It's a real game and I'm truly exhausted from playing it but I am with you.....the healthcare field is ridiculously lazy, non caring and they do need a wake up. I am so sick of "that is not my specialty" or from my "never again cardiologist's PA" who said "What's Long Covid? We will all die before we can get an appointment with any of them it seems. And all they work for are the spreadsheets/numbers/and dynasty of a big corporation. Many physicians now do not work for patients anymore. SAD! Feel free to rant anytime!!

REPLY
@andreinab

I have been using it for 2 years on and off to treat my long covid symptoms. I feel like I can’t live without it for I fear what I will face without them. It took me a long time to figure out why this medication works. I even spoke to MS patients who use it to manage their symptoms. Every time I have gotten off them my symptoms return. Please I ask the medical community to look into this drug and find a way to recreate it with minimal side effects because there’s something to this.

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You are so right. There is something to it! The side effects no longer bother me if I eat something when taking 100 mg of doxy. I was so worried it would not work if not on an empty stomach. Here's where I found out that perhaps when I first got Lyme Disease, an empty stomach was required to help with "chronic lyme". Over the course of X number of years, when people just could not tolerate it, a small meal was introduced. NOW, my wonderful physician not only gives me 100 mg to take once a day, but he stresses to take with food. I researched why doxy was given to COVID patients and it was solely for inflammation because COVID can and will inflame one or more organs. It chose to mess with my heart.

REPLY
@donnamac

You are so right. There is something to it! The side effects no longer bother me if I eat something when taking 100 mg of doxy. I was so worried it would not work if not on an empty stomach. Here's where I found out that perhaps when I first got Lyme Disease, an empty stomach was required to help with "chronic lyme". Over the course of X number of years, when people just could not tolerate it, a small meal was introduced. NOW, my wonderful physician not only gives me 100 mg to take once a day, but he stresses to take with food. I researched why doxy was given to COVID patients and it was solely for inflammation because COVID can and will inflame one or more organs. It chose to mess with my heart.

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I have a history of Ehrlichiosis, which took months to diagnose and left me with unresolved issues. I get these attacks that resemble seizures, with an elevated heart rate but were confirmed by EEG as not seizure activity—though one neurologist mentioned they can be difficult to capture.

In 2022 is when I got these long COVID symptoms and it worsened my "seizures" to a daily occurrence. I felt like I was on the brink of paralysis, waking up each morning with temporary muscle paralysis .

I started Doxy and it was a decision I made without knowing why, but it brought me relief. It took weeks and months for it to revive me, with intermittent flare-ups. Whenever I stopped taking it, my symptoms return. Doxy is known to modulate the immune system and act as an antiviral for COVID. I take it with food and find it effective, noticing issues only when I eat poorly, like consuming too much sugar or fried foods.

The anxiety of falling ill without adequate medical support, especially in hospitals, has made me somewhat bitter. The lack of help despite intense pain has left me feeling lost. I recognize that some physicians genuinely want to assist, but are limited by healthcare structures heavily influenced by insurance companies and financial ties with hospitals, creating an unfair system.

Thanks for letting me rant!

REPLY
@andreinab

I have a history of Ehrlichiosis, which took months to diagnose and left me with unresolved issues. I get these attacks that resemble seizures, with an elevated heart rate but were confirmed by EEG as not seizure activity—though one neurologist mentioned they can be difficult to capture.

In 2022 is when I got these long COVID symptoms and it worsened my "seizures" to a daily occurrence. I felt like I was on the brink of paralysis, waking up each morning with temporary muscle paralysis .

I started Doxy and it was a decision I made without knowing why, but it brought me relief. It took weeks and months for it to revive me, with intermittent flare-ups. Whenever I stopped taking it, my symptoms return. Doxy is known to modulate the immune system and act as an antiviral for COVID. I take it with food and find it effective, noticing issues only when I eat poorly, like consuming too much sugar or fried foods.

The anxiety of falling ill without adequate medical support, especially in hospitals, has made me somewhat bitter. The lack of help despite intense pain has left me feeling lost. I recognize that some physicians genuinely want to assist, but are limited by healthcare structures heavily influenced by insurance companies and financial ties with hospitals, creating an unfair system.

Thanks for letting me rant!

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Oh I am so sorry to learn of this condition you have developed from Ehrlichiosis. And then you get more because of COVID. I can understand the anxiety of falling ill in these times, as I, too, feel the same way. Hospitals send us to Urgent Care, and Urgent Care sends us to hospitals. And Primary Care docs are booked months out. It's pathetic.

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@donnamac

I am so sorry to learn about all of the issues you have had since COVID. And as a person with a long ago medical career and trainer of EMT's (really long ago), I probably know enough to be dangerous. Your situation sounds similar to mine. I was given Doxycycline when I had what they thought was a chest cold as COVID test was negative. I knew something was really wrong and the Urgent Care I went to did not have an x ray machine. I wanted an x-ray as I felt something "not right" in my chest. Two days later I went to a different Urgent Care, they had an x ray machine and I said I NEED AN X RAY. Still tested negative. But the kind doctor, retired Air Force medical director showed it to me and I had pneumonia. He gave me a Z-pack. Well I went home and the next day could hardly swallow, and I tested myself for COVID and BINGO, positive....so back to the retired air force doc and he tested as well, and said "well there is our answer." He had me stay on the Doxycycline, finish the Z Pack, and gave me Paxlovid. He wanted to place me in the hospital saying I was one very ill woman, but I said no, just give me 3 days. I went back to see him on Thanksgiving night, three days later and I felt so much better. He took another x ray and the pneumonia was clearing up. He said I had turned the corner and to finish up the meds. A week went by and BANG....I had a relapse and that is when I truly felt like I had COVID. Fever, sore throat that felt like I swallowed glass, no sense of taste or smell, chills, fever and body aches. And that was Thanksgiving. The sore throat went away, fever and chills gone, pneumonia gone, but body aches are awful, and constant 24/7 heart palpitations began and haven't stopped. I also have intermittent loss of smell and taste. I had Lyme Disease back in 2016 and was miserable but eventually it cleared up with Doxy. So, after much research from my Lyme experience, and now COVID, Doxycycline seems to maybe be one part of an answer. All I can say is that I started taking Doxy as of 4 days ago, and the unbearable fatigue has diminished by about 75% almost immediately. There are people who take Doxy for rosacea skin issues 100 mg a day and it keeps it at bay. This has been for years now. So, I am giving it a go hoping it continues to let me feel somewhat normal with less scary side effects. NONE of my physicians really want anything to do with me because why? Well I've know for years there is no money in a condition I have from a tick bite and that is Alpha Galactose Allergy AND Lyme Disease, and they don't want to spend time learning about if it's not their specialty. But it is the first thing many blame on odd symptoms such as heart palpitations, etc. I know what I have is not from AG or Lyme, it is from COVID Nov. 2023. And there truly hasn't been enough time for physicians to know what will happen to people who have had it.
I will end my rant.....no apologies from you necessary.....LOL.

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Hi Ms Mac,
Just checking in to see how your trial of doxy has been for you?

I’d be interested to know what dosages you’ve tried and how long improvement lasted if you’re willing to share?

Best,
REPL

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