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?

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@wbbill

Soooo cope-hope-prayer

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Yes, and after years that is very hard advise to follow.
Wishing for some breakthrough for all of us, but my hope is quite diminished as these things take so much time.
I can’t help but compare to the Aids epidemic that took years and years before there was a good treatment.
I get scolded for being negative. I was always an optimistic person until THIS.

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It could be a coincidence, but three days after starting my dosage of 100 mg of doxycycline each day, I felt better and better. My energy level has improved greatly and the heart palpitations have lessened. I still have extreme muscle pain but that is from the statin drug that I began taking last year. I stopped it for a week and voila the muscle pain went away. I started that drug back up and bingo....severe joint pain which was worse after COVID. So many times in my life I have had a instant "feeling" or "insight" or intuition, and am never wrong, and I do not believe this situation of getting better taking doxy is a coincidence. I am meeting with my "trials" physician next week and will tell him about my experience.

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There's been a study (I read about it in Scientific American) of people on injectable weight loss drugs that found that they act as anti-inflammatories as well, causing significant improvements in things like IBS, chronic fatigue, and fibromyalgia. I've got all three since Covid, so I'm in the process of getting my HMO to approve me for a weight loss drug, technically for weight loss but honestly my weight is not the reason I'm trying it!

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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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My sympathies for all you've been through and for the frustration/anger at the nonresponsiveness. Not to excuse the pros, but think it's just all too new. Nobody really knows. I've read thatCovid can reactivate latent conditions like Lyme and herpes. Did you ever try the late Stephen Harrod Buhner's Lyme protocol? Buhner was a brilliant herbalist, scrupulous researcher, and thought outside the box. Check it out. He wrote a book on Lyme...good luck. Sending hugs.

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@kmae

There's been a study (I read about it in Scientific American) of people on injectable weight loss drugs that found that they act as anti-inflammatories as well, causing significant improvements in things like IBS, chronic fatigue, and fibromyalgia. I've got all three since Covid, so I'm in the process of getting my HMO to approve me for a weight loss drug, technically for weight loss but honestly my weight is not the reason I'm trying it!

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I get it! There are so many drugs that can help with inflammation internally that we still cannot grasp which works and which doesn't. I know when I had the terrible case of COVID and Pneumonia last November, I was immediately given a prescription of Doxycycline AND Zithromycin. The Zithromycin was for the pneumonia, and it cleared it right up. Doxycycline was given to me first before I tested positive for COVID. I did some digging and found that it is a good anti inflammatory drug even though not given out often. Then the long COVID hit with the heart palpitations and chronic fatigue. So far, I am far less fatigued since I started taking Doxy. The heart palpitations have improved but are still there somewhat. I decided to take it for ten days. I felt better after the second day and counted day three as the day of success. I did this after much research and also because I receive Doxy if I get a tick bite because I had Lyme Disease. I wish you much success with your HMO! Keep in touch!!

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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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Your experience sounds a lot like mine with having to be your own advocate and trialing of meds!

I know before finding an infectious disease(ID) specialist who focuses on chronic illnesses and doesn’t subscribe to “there’s no chronic Lymes”, I was trying to talk every doc I know into assisting me with finding something, ANYTHING!

I found Paxlovid was my hero and then I added Cipro and WOW! That made me feel like my long remembered self!…

But that only lasted 2 weeks and Paxlovid caused too much GI distress after 6 mo use.

I finally got into to see my new LC ID doc who has helped me make sense of things. I’m trialing other meds from lab results showing a reactivation of both EBV (mono) and VZV (chickenpox). So it makes sense that antivirals (Paxlovid) helped my symptoms and then because these are GI viruses and they can cause other issues like SIBO or bacterial overgrowth, then the one round of antibiotics helped clear out all of the bacteria overgrowth but the second or third were ineffective.

One important aspect she mentioned is that what they’re finding is Covid reactivates other dormant viruses and bacterial infections. So your past Lyme’s along with the antibiotics really helping you makes a lot of sense because it sounds like your Lyme’s is reactivated and Lyme’s is bacterial.

Just an FYI, Paxlovid rebound is not caused by Paxlovid but there are some case studies showing insufficient viral clearance with only 5 days. IMHO, I believe those who have underlying conditions or past infections (like Lyme’s or bad cases of EBV, CMV, have MCAS, CFS, etc.) should get 10 days of Pax and that would stop the rebound ( I had it really bad too). But that’s my theory and would need further research.

I’m no expert here but from family experience as well as research, I believe Lyme’s needs even more than Doxy to really kill everything off, as my Aunt had treatment for a year with a cocktail of many herbs and antibiotics. I believe that Doxy alone isn’t truly killing everything but merely managing the active growth while others are hiding (in stationary phase), so it can return. But definitely need an expert!

I hope you get answers and treatment for your Lyme’s! And I hope this is your answer to healing 🙏🏻

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@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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Can we get the name of your Infection Diseases specialist?

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I will try this. Thank you

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Doxycycline is a front line treatment in covid 19 pneumonia as of 2024 apparently. It works well. I also had azithromycin first and doxy second. Both helped but the persistent cough remained( and difficult phlem still bothersome). A small fever presents on and off. I constantly go through a bad period that can be minutes or more and I literally sweat it out on the days no fever is presenting. I am hoping this is a good thing and the body is cleaning the toxins. My weight will go up and down ten pounds in one week. This is inflammation and loss of appetite or increased appetite working. Total hormonal relationship. My left side of my body seems to have more inflammation in the arties and if I look at the left and right side of the body there are visible differences in the arties, their size and their visibility. This is also very present and noticeable when inflammation is affecting the body especially the joints, knees, hips, and elbows (My elbows are now very sensitive to touch, almost too painful). The hit of antibiotics - back to back for secondary bacterial infections- and a viral infection(covid 19 is viral) can definitively be the reasoning behind inflammation, pain and discomfort.
Settling down the nervous system is a must. How you go about this is the big test. Trial and error, and what is comfortable is different for everybody. The best thing to do is to rest, be calm, hydrate, and take a probiotic - GUT Health is key to treating inflammation. There are specific steroids being used that block unwanted inflammation in the intestines which are advancing in the care of multi-system post Covid 19 inflammation and disease. There is a definite link to the GUT. I have found at least three papers that have discussed the virus living in the gut and now is become a topic of research as identifying markers and reducing the illnesses occurring with this function of the disease. This is very closely linked to re- infection of Covid 19 in certain individuals. This is also identified as having a significant co relation to Long Covid sufferers. Long Covid is now known to have a pathology of increased secondary infections, and in some cases this can lead to more complicated outcomes or morbidities than once known.
As for my type of inflammation, I will elevate the area that is most bothered by pain or/ and inflammation as much as I can. Lymphatic exercises, stretches, and self massages will contribute to a healthy healing as well as diet.
Make sure to seek medical attention if things change too dramatically as this happens frequently with post covid inflammation and infections. This is key. With having Covid 19 and pneumonia, and another system bothered with secondary infection I remain vigilant but cannot stand the idea of entering an ER. I think I would have to be taken kicking and dragging all the way with the idea that I could actually be helped without sensing the dread of another infection or bad news. I try to charm my health by having good news to go off of and God willing it gives me more leverage on the "bad" days I have to talk to a doctor.
I think at all times they are putting it back in our hands to do the reading and research as to what works best for pain management. The more you can assist in your own care the better a health care team can attest to what needs to be done immediately.
This brings me to journaling. The post-Covid journey changes by the hour some days. (Especially if taking certain steroids or medications). Every new medical intervention will bring on different changes. Even the littlest thing can assist a health care provider with a better insight as to what to narrow in on. Write it all down, or record it on your phone through voice messaging to yourself.
Water, rest, and one goal a day is a plan. Learn something new about this crazy covid every day you can. Nothing is small, but managed easier if found earlier. Prevent as much as you can from going down a road of new diseases. This disease is all about inflammation... all diseases have inflammation involved.
The idea is to learn to manage the inflammation, and pain, and changes that happen... stay well, stay healthy, and yes put your battle face on when you need to advocate for you. This narrow view we have of this disease is constantly being fed new research, new information on Covid 19 and its effects on human anatomy and physiology. Physiological Wellness is going to be taking its script from the past and the present through human experiences and medical theories combined. I can say "Document all that you are experiencing." "Read as much as you can bookmark it." It may be the best advice I can pass on to you. Take a break and reflect, stretch your mind, and meet your expectations of care no matter how challenging! Things will improve in at least one of those experiences. Sometimes small wins are the greatest.

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@kmae

There's been a study (I read about it in Scientific American) of people on injectable weight loss drugs that found that they act as anti-inflammatories as well, causing significant improvements in things like IBS, chronic fatigue, and fibromyalgia. I've got all three since Covid, so I'm in the process of getting my HMO to approve me for a weight loss drug, technically for weight loss but honestly my weight is not the reason I'm trying it!

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It is Metformin that has shown potential with a healthier outcome with Covid 19 treatments.

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