COVID Long Hauler Looking for Help

[johnnycake23]

Hello out there, I've been on this site for over a decade and it has been very helpful to me (and no doubt others). But this post is not about me.

Back in November my wife caught COVID, and one of her symptoms, along with pleurisy and a persistent cough (imagine coughing for six months straight), is an arrhythmia. Before COVID, she was the picture of health, never so much as taken an aspirin. Where before she was energetic, now she tires easily; she she used to rise early but now sleeps in most mornings. She started seeing an electrophysiologist (among other docs) and he prescribed her Amiodarone and Metoprolol. These meds have helped, but only mildly. She was told that these meds are not meant for long-term care, and that if her condition doesn't improve in no more than 12 months, that an ablation or even a pacemaker must be considered. The ablation is very risky because the issue is "close to the AV Node," which means a pacemaker is the likelier option. The electro, in two visits, never even listened to her with a stethoscope; he merely read her EKGs and heart monitor data, which gives me pause as to her quality of care. Every day she takes her pills, vitamins (multivitamin, E, and Zinc), and stays well hydrated. After six months we've been told to keep waiting and hope for the best, that there's nothing else we can do.

I'm writing because I'm out of ideas, desperate, and looking to pull a rabbit. If anyone has any advice/insight as to what else we can do, I'd be most grateful. Whether it's courses of treatment, exercises, or even support sites such as this one dedicated to COVID long haulers, that would be great.

Thank you for reading.

 

[pellicle]

I'm sorry to read your post, and it underscores how many sections of the community are vulnerable to this disease.

I can not offer any more than my best wishes because at this point in time its all quite "unexplored territory"

I do recall reading this
https://www.healthline.com/health-n...e-improve-symptoms-for-people-with-long-covid
and another from a local (Australian) government news outlet
https://www.abc.net.au/news/health/...ong-covid-could-the-vaccine-cure-it/100023114
I am not sure if you'll be one of the percentage
Best Wishes

 

[johnnycake23]

Pellicle, thank you for this; I will read them with great interest. In fact, you made me realize I omitted an important point. She has been advised that she needs to be symptom-free at least four weeks before getting the vaccine. The titles to these two articles seem to suggest exactly the opposite. Hmm!

 

[Woodcutter]

I'll offer an opinion on EP's as I have worked with several over the years and have had ablations at 2 different centers. I would not be terribly bothered by an EP not using a stethoscope. They are working on the heart electrical pathways which often are not going to yield a useful audible signal. I know I have had EP visits and a stethoscope was not touched.

One thing to be aware of with arrhythmias is that they can be quite irregular and inconsistent. Covid can affect so many things it is unfortunately not surprising that it can impact the heart. Many times irregularities can be corrected by restarting it and or medications so I would expect the EP to fully explore these more benign approaches first.

For me personally, ablation(s) worked. However, we first tried something like 5 different medications and over a dozen restarts without any success. If a virus is the cause of an arrhythmia, I also do not think it would be unusual for eradication or even control of the virus to result in the body re-establishing correct rhythm. Even without a virus, the body does this routinely . . . hence the irregular/inconsistent that can be so confounding.

Just some opinions based on my experiences.

 

[johnnycake23]

Thanks for the insight, Woodcutter. So I guess it's not a big deal that he didn't use a stethoscope. For me it seemed odd because my entire adult life when I've seen a cardio or my electro a stethoscope was used. Appreciate your response.

 

[Humboldtgrrl]

Hello out there, I've been on this site for over a decade and it has been very helpful to me (and no doubt others). But this post is not about me.

Back in November my wife caught COVID, and one of her symptoms, along with pleurisy and a persistent cough (imagine coughing for six months straight), is an arrhythmia. Before COVID, she was the picture of health, never so much as taken an aspirin. Where before she was energetic, now she tires easily; she she used to rise early but now sleeps in most mornings. She started seeing an electrophysiologist (among other docs) and he prescribed her Amiodarone and Metoprolol. These meds have helped, but only mildly. She was told that these meds are not meant for long-term care, and that if her condition doesn't improve in no more than 12 months, that an ablation or even a pacemaker must be considered. The ablation is very risky because the issue is "close to the AV Node," which means a pacemaker is the likelier option. The electro, in two visits, never even listened to her with a stethoscope; he merely read her EKGs and heart monitor data, which gives me pause as to her quality of care. Every day she takes her pills, vitamins (multivitamin, E, and Zinc), and stays well hydrated. After six months we've been told to keep waiting and hope for the best, that there's nothing else we can do.

I'm writing because I'm out of ideas, desperate, and looking to pull a rabbit. If anyone has any advice/insight as to what elsee can do, I'd be most grateful. Whether it's courses of treatment, exercises, or even support sites such as this one dedicated to COVID long haulers, that would be great.

Thank you for reading.

[I'm writing because I'm out of ideas, desperate, and looking to pull a rabbit. If anyone has any advice/insight as to what else we can do, I'd be most grateful. Whether it's courses of treatment, exercises, or even support sites such as this one dedicated to COVID long haulers, that would be great./QUOTE] I am on a group that reads/discusses Covid research & there have been a handful of research Posts on Long Hauler Syndrome. I would be happy to refer her as a Member for that group, but only a few Posts are on LHS. One member suggested these two Covid support groups - Facebook Groups Facebook Groups. Re Pleurisy - an issue for me - now recurrently with no known cause. It's a "diagnosis of Exclusion" after all the pricey EKG/CT/MRI...rule outs & then I'm prescribed Naproxen/Aleve. What I've found to read is that pleurisy is not understood yet, so I'm winging it on my own OTC Aleve + monitoring. However, I don't have other known high risk issues, so I can dink around. Mine seems to be intertwined with costochondritis. Every once in a while I google keywords on "scholar.google.com" where science research is posted for free. Best.

 

[almost_hectic]

Hello out there, I've been on this site for over a decade and it has been very helpful to me (and no doubt others). But this post is not about me.

Back in November my wife caught COVID, and one of her symptoms, along with pleurisy and a persistent cough (imagine coughing for six months straight), is an arrhythmia. Before COVID, she was the picture of health, never so much as taken an aspirin. Where before she was energetic, now she tires easily; she she used to rise early but now sleeps in most mornings. She started seeing an electrophysiologist (among other docs) and he prescribed her Amiodarone and Metoprolol. These meds have helped, but only mildly. She was told that these meds are not meant for long-term care, and that if her condition doesn't improve in no more than 12 months, that an ablation or even a pacemaker must be considered. The ablation is very risky because the issue is "close to the AV Node," which means a pacemaker is the likelier option. The electro, in two visits, never even listened to her with a stethoscope; he merely read her EKGs and heart monitor data, which gives me pause as to her quality of care. Every day she takes her pills, vitamins (multivitamin, E, and Zinc), and stays well hydrated. After six months we've been told to keep waiting and hope for the best, that there's nothing else we can do.

I'm writing because I'm out of ideas, desperate, and looking to pull a rabbit. If anyone has any advice/insight as to what else we can do, I'd be most grateful. Whether it's courses of treatment, exercises, or even support sites such as this one dedicated to COVID long haulers, that would be great.

Thank you for reading.

Im no doctor so my opinion is only that... opinion. But having said that, some of what she's experiencing may even be from the meds she's been prescribed. Meteprolol can really zap your energy and make you just feel kinda lousy in general. If you feel its not being super beneficial, maybe even as the doctor if she can try going without it, or even a smaller dose. Her energy may come back. I have occasional irregular heartbeat and had to be cardioverted a few times for afib. Mostly its a thing of the past for me now. Things changed after my OHS, but it never completely went away. Lifestyle changes have helped me the most. Regular exercise and avoiding caffeine, plus adding B12 and magnesium to my routine has shown the most effective. B12 especially in my case.

 

[MartinF]

I've watched several doctors on TV throughout the pandemic and one (Dr. Mobeen Syed) suggested steroids for long haulers to help with inflammation. Also, Vitamin D is important. You should research those more. I'm not a doctor. My wife wrote these steroids down: methylprednisolone and dexamethasone.

 

[rich01]

Ivermectin. Search for Ivermectin long haulers. If your doctor won't write a prescription, there are a couple of options. The home page of Front Line Covid-19 Critical Care has a link for getting Ivermectin. These are some of the top critical care doctors in the country who treat Covid-19 patients. The other option is to get the dosage specs from the FLCCC site and buy some for your horse!

https://covid19criticalcare.com/
About the Front Line COVID-19 Critical Care Alliance
The FLCCC Alliance was organized in March 2020 by a group of highly published, world renowned Critical Care physician/scholars – with the academic support of allied physicians from around the world – to research and develop lifesaving protocols for the prevention and treatment of COVID-19 in all stages of illness. Their MATH+ Hospital Treatment Protocol, introduced in March 2020, has saved thousands of patients who were critically ill with COVID-19. Now, the FLCCC’s new I-Mask+ Prophylaxis and Early At-Home Outpatient Treatment Protocol with Ivermectin has been released – and is a potential solution to the global pandemic.

 

[johnnycake23]

Hi, and thank you for the input. In response to some of the recommendations above, she's been on no less than four cycles of steroids, which helped while she was on them, but the issues re-appeared once the cycle was over. Along with her heart meds, she's been taking a multivitamin, Vitamin D, Zinc, and a baby aspirin. She's not tried B 12 and magnesium, so we'll look into those, as well as the Facebook pages. And we will definitely look into Ivermectin, something that neither of us has heard about.

Thank you for taking the time to help. It is greatly appreciated.

 

[rich01]

Hi, and thank you for the input. In response to some of the recommendations above, she's been on no less than four cycles of steroids, which helped while she was on them, but the issues re-appeared once the cycle was over. Along with her heart meds, she's been taking a multivitamin, Vitamin D, Zinc, and a baby aspirin. She's not tried B 12 and magnesium, so we'll look into those, as well as the Facebook pages. And we will definitely look into Ivermectin, something that neither of us has heard about.

Thank you for taking the time to help. It is greatly appreciated.

This is a discussion of Ivermectin with Dr. John Campbell (PhD/Nurse) and Dr. Pierre Kory of the Front Line Covid-19 Critical Care (FLCCC). Dr. Kory has testified to the US Senate twice on treatment for Covid-19. In this video, there is a mention of using Ivermectin for long haulers, as well as prophylactically and as a treatment for Covid-19. Ivermectin is an antiviral and an anti-inflammatory. It appears to be the anti-inflammatory properties that make it an effective treatment for long-haulers.

 

[MartinF]

Dr. Campbell was one of the doctors that we watched regularly.

 

[jcgtok17]

My friends from the Philippines all swear by Ivermectin. One of the few "cheap" drugs they can get there. Their case(s) have been mild.

 

[rich01]

Warning: If you are on warfarin, please check with a doctor before taking Ivermectin as it may affect your INR.

Warfarin
Warfarin is a drug used to thin your blood. Taking warfarin with ivermectin can thin your blood too much and cause dangerous bleeding. If you need to take these drugs together, your doctor will monitor your international normalized ratio (INR).

https://www.medicalnewstoday.com/articles/ivermectin-oral-tablet#interactions

 

[rich01]

FLCCC just announced they will publish a protocol for long haulers early next week.

 

[johnnycake23]

I've never heard of Ivermectin, but I'll certainly look into it. And I'll also read what FLCCC says next week regarding long haulers.

Thank you for this information.

 

[Critter]

Covid19 heart has been documented. Virus has a propensity for cardiac tissue and conduction issues. Pacemaker is not an unusual endpoint for this condition .

 

[johnnycake23]

Hi, just thought I'd post an update on my better half's condition.

Yesterday we went to see my electrophysiologist, just for a second opinion. Heretofore wifey has been advised by her primary that she should be free of COVID symptoms for four weeks before considering the vaccine. Well, the ep, after he took her history and checked her heart rhythm, said she should go ahead and get the vaccine, as the latest information out of Columbia and Minneapolis (presumably Mayo) says the vaccine may restart the rhythm process, or words to that effect. If after the vaccine, things are still the same, then it's time to talk ablation.

So she's gonna get the vaccine next week, and hopefully that's the secret potion we've been hoping for since November, and no intervention is needed. Again...hopefully.

 

[Bina]

Hi Johnny ! Sorry to read that your wife is a long hauler. It must be so very hard to endure this stupid Covid virus for so long. ..
I'm thinking that if it was me, I would probably get the vacc, discuss ablation further, and not be afraid of a pacemaker implant.
All the best to both of you.