Public Forum
Default group for all members. Biological family sometimes get you down? Come join your logical family!
Organizers:
- Organized by
-
-
Persistent Cardiac Infection
-
Persistent Cardiac Infection
Does anyone know of a cardiologist that has a high level of expertise in cardiac viral infections? I live in NE Florida but willing to travel anywhere in the US or virtual outside of the US.
I had Covid in July of 2020 and have had many cardiac problems since leading to many procedures and treatments. I continue to have new cardiac problems develop, recently having a dual chamber pacemaker placed. The cardiologists I’ve seen have reached the limit of their knowledge and experience with my “unexplained” continued cardiac issues.
I’ve been to a couple major academic medical centers and about 20 different cardiologists with a variety of specialties. I’ve had a couple cardiac MRIs, PET scan, and many echos. They come back as normal and no heart disease. I’m in my early 60’s.
I had re-activation of herpes zoster (shingle) which has persisted, and possibly EBV which I continue to deal with. I take Ivermectin, Valtrex, and some supplements with some relief but it seems to help less over time. Any time I feel good and increase my physical activity my symptoms come on strong and I get worse.
I believe I need a heart biopsy to see what pathogen is continuing to infect my heart for more specific treatment. I haven’t yet found a cardiologist who has the expertise to both believe I have a cardiac infection and/or do or refer me to a cardiologist or surgeon for a biopsy. Because the testing comes back normal, they stop there.
I found this article that gives good insight:
Frontiers | Persistent viral infections and their role in heart disease
frontiersin.org
Frontiers | Persistent viral infections and their role in heart disease
Viral infections are the culprit of many diseases, including inflammation of the heart muscle, known as myocarditis. Acute myocarditis cases have been descri...
-
23 Replies
-
I’m not a medical expert but in my own quest for answers with my own problems I just had my endocrinologist refer me to a cardiologist. The point is, sometimes other systems are involved and it’s possible the type of doctor you’ve been working with isn’t finding the answer because it takes a different type of doctor to do some digging and find that answer. For example, dysautonomia affects the heart. I don’t know if that is a neurologist that diagnoses it? Maybe someone else here knows?
-
👍 Thanks jrgerber, really helpful.
-
Thank you! That’s a helpful suggestion. It’s easy to get stuck in one frame of thinking and forget other options.
-
-
👍 Such a well presented question, must be so frustrating. I was looking at suggesting our provider list here https://imahealth.org/providers/, but maybe jrgerber’s suggestion of looking wider is a great suggestion.
-
Thank you. It is very frustrating. A continuous roller coaster ride for sure. I do remain hopeful since I have no heart disease that once I can get whatever virus or other pathogen under control that I can get a little more predictability in my health and quality of life.
I’m going to a PCP I found on the list, but haven’t specifically looked for a cardiologist on the list. I’ll try that. Yours is a helpful suggestion as well. Thank you.
-
I just searched and there are 2 cardiologists on the list! I’ll try contacting both.
-
-
I know this might sound weird, but I’ve been reading about a lot of people plugging in all of their symptoms and bloodwork results and all that stuff and ChatGPT has been able to diagnose! Maybe try that
-
I will definitely try that. Thanks for the idea!
-
-
Over the past few years I’ve been learning a lot about dmso, chlorine dioxide, ivermectin, methylene blue, pine gum spirits… There is so much excellent info about all these amazing healing substances now! I’ve been using all of them for different conditions. Meanwhile, one seriously needs to learn all about what and how to use beforehand, as well with appropriate diet, supplements, lifestyle changes, etc. accompanying anything we do. Increasing numbers of practitioners are prescribing & integrating them. I’ve been taking ivermectin for a systemic candida condition and recently, pine gum spirits has been the miracle solution. Though, seriously, one needs to learn about how to sues these miracle healers!!!
-
Thank you for your reply! I’ve tried a couple of those, but not others. I’ll look in to the ones I haven’t. Good ideas.
-
-
Maybe Dr. Peter McCullough sees patients or offers telemed consults?
-
Thank you I’ll check him out and see.
-
-
I would suggest contacting Dr. Pierre Kory at Leading Edge Clinic.
-
Thank you for the suggestion
-
-
I recommend Dr. Jordan Vaughn. He is an Internal Medicine physician and has done a lot of micro vascular research with his COVID and vax injured patients. He is located in Alabama. Dr Pierre Kory would also be on my list of recommended physicians. Best wishes to you.
-
Good idea. My brother went to Dr. Vaughn for long-covid with good success. I didn’t think of him for a cardiac problem but can see if it’s in his wheelhouse. Thank you
-
-
I recently used ChatGPT to help me do medical research on a problem I have. There was no major new information brought out, but ChatGPT was able to confirm my hypothesis by providing references to back up each point. It also fleshed out m points with additional information.
This is after every doctor I tried to discuss this with gave me the “doctor look”, meaning they thought I spent too much time on the Internet.
Once you get your problem documented the way you want it, ChatGPT can turn it into a document you can present to a doctor, complete with references. And you could also send it to university medical researchers, and maybe a few would take the time to read it.
Just a question to get you thinking, “Could the infection be originating somewhere else in the body – mouth, leaky gut, etc.?”
-
Great info, thank you! You did get me thinking and looking at it from a different angle.
I haven’t used Chatgpt in the way you are recommending with a document with the references I can print out for a doc visit. I’ll try that. I have printed and brought the actual articles to a visit and it helped.
That’s a good point that the infection origin could be in a different location, but still affecting my heart. There’s also a possibility I’m chasing it around as it moves to different areas.
-
I have found the best way to use ChatGPT, is to treat it like a conversation with a really smart person. You ask something and it responds. Then you can ask it a related question without having to repeat what you already said. Then you ask new questions as you have them, refine the information, go deeper, etc. ChatGPT will also come back with things it could add, like creating a diagram, or providing more information about a reference, etc. You just keep asking questions and refining the discussion.
If you don’t know how to do something in ChatGPT, just ask and it will tell you how to do it. Make sure you save the information periodically. I assumed everything was being saved, and yesterday I lost about an hour’s work. ChatGPT said it was a memory problem.
ChatGPT is also known to misunderstand or even tell some whoppers, so if you disagree, point it out and ask for clarification. Verify the important stuff.
-
That’s very good to know. I have limited experience with AI but have used it for my work a bit. I’ll try what you recommended. Thanks 🙂
-
-
-
-
Excellent points here. Additionally, I had palpitations, itchy arms, and extreme fatigue after two Covid19 infections. I went to cardiologist got verapamil which helped some with palpitations (diagnosed as PVC’s). But I knew there was MORE wrong with me. I decided to get an OTC Continuous Glucose Monitor (CGM) because I felt maybe I had blood sugar dips. Turns out I have what mainstream medicine would call pre-diabetes. Oh my, glucose would spike so high (even 180) after a meal. I learned that the spikes THEMSELVES cause FATIGUE and that our body wants our blood to be in 80’s. This will not show up in the common lab tests for diabetes. My a1c had just become 5.8 so knew I should do something about that but not given any recommendations. Anyway, my fatigue and itchy arms were gone in one day after cutting carbs guided by my CGM. And my palpitations stopped within months too, so stopped the verapamil. That might help your fatigue? May be based on gulcose spikes? Insulin resistance is WAY connected to heart problems. Watch youtube of Dr Ben Bickman professor to learn insulin resistance relation to HEART. Who knew?
-
Thanks for your input. It’s all helpful 🙂
I’m happy to hear you figured it out and with good resolution.
I have worn a CGM several times and reduced carbs. The problem I had was that my blood sugar was dropping too low after having the covid infection. I used the CGM to adjust my diet to stop the blood sugar drops.
I also had hypothyroid after covid but with the help of a good doc, my thyroid now functions normally.
So many odd problems after covid….
-
👍 “Anyway, my fatigue and itchy arms were gone in one day after cutting carbs guided by my CGM.” So interesting.
-
Log in to reply.