Anyone else get “your symptoms don’t make sense” from doctors?

i have heart issues

was strong as an ox before contracting lyme and bartonella

i have had lots of things since - like irregular heat beat, severe palpitations and odd blood pressure spikes etc

then aroudn1 year ago i started getting extreme chest pain with nausea in waves in the the middle of the night ended up in the ER

but my heart damage blood test markers were normal, X-ray, EKG and echocardiogram were all normal - so according to even the best cardiologists - my heart is normal - and i should not be concerned.

but it still aches constantly - and clearly there is something not right - i have no doubt in my mind that its driven by Bart or Lyme

the scans and test were still useful in that they showed i did not have atherosclerosis or any major plumbing issue that needed surgery

my best guess now is that its microvascular dysfunction - since around 30% of angina cases have no visible heart abnormality and microvascular dysfunction is thought to be the cause - and both these infections cause damage to and dysfunction of the microvasculature in the whole body - the heart is just one of the more sensitive tissues due to its v high energy consumption - and is therefore susceptible

in my case it often flares during herx like reactions - and some things seem to trigger it more than others - oil of oregano for instance sends it into overdrive - which is a real shame as it was super helpful for me - pharma antibiotics less so.

for what its worth - if its the constant aching type stuff - i don't think its usually life threatening - more a quality of life issue
i expect it will eventually resolve with successful antimicrobial treatment of the infections

I stopped visiting regular doctors after i got kicked out of a hospital even with desaturation. I figured that these people only care about them selves and "If they can be held accountable"

My only advice I can give is avoid them If its possible, while of course I cant recommend avoiding them in general. When you get threatning Symptoms I think its fine to visit a conventional. But other then that....

Besides treating the cause of your illness, peptides might be an Idea to amplify healing and increase Recovery of the damage than the infections have done to you

Good dialog here already.

One add on is I’m pretty sure like 90% of my chest discomfort was Costochondritis - more common in fibromyalgia. Never heard it mentioned until I stumbled over to their forum.

I definitely have had heart issues along my chronic illness adventure, but never actual carditis as far as testing has shown.

Premature ventricular contractions - These arrhythmias were really scary when they first started! Basically one chamber of my heart beats before it has a chance to fill up, so the next beat happens with a delay and causes a heavy thump. It feels extra bad if it happens twice in a row, and it can start to hurt when it's happening often. PVCs are more noticeable when you are lying down or very full. My cardiologist said that her practice exploded with these in summer 2020 because everyone was under pandemic stress! They are harmless as long as they constitute less than 3% of heartbeats, and it's easy to count your heartbeats to determine this. These are also easy to see on an EKG, with a distinct wave pattern, but only if the EKG is taken at exactly the right moment when the PVC occurs. Lots of people have these who are perfectly healthy.

Postural orthostatic tachycardia syndrome - This form of dysautonomia makes your heart beat faster than it should when you are upright, especially standing. Some people experience palpitations, chest pain, dizziness, blood pooling int he legs, headache, anxiety, weakness, and fainting when they have POTS. You can test this by taking your pulse when lying down, and then comparing the number to your number after standing for ten minutes. If you standing number is 25 beats per minute higher than when lying down, then you probably have POTS. It's very common with chronic tick-borne disease as well as lots of other conditions like long COVID and chronic fatigue syndrome/myalgic encephalomyelitis. It does not damage your heart, and is really a neurological problem, so most dysautonomia specialists are neurologists. Medications help some people, as does licorice, compression garments, high salt intake, proper hydration (not too much or too little), limbic system retraining, and recumbent exercise. The obvious danger of POTS is fainting, and how debilitating it is not to be able to be upright for any length of time! I had this for years, and it was so limiting.

Costochondritis - Feels like an electric shock right over my heart, makes it very hard to breathe sometimes, can be mild or severe. I have had this since I was a small child due to hypermobility spectrum disorder. I didn't know what it was until my twenties, and actually was able to stop it entirely these past few years through building my chest wall muscles with yoga. I can sleep on my side for the first time in my life!

I have had several echocardiograms, and while I do have a patent foramen ovale, everything else is always healthy and unremarkable. When I experience chest pain or other issues that seem like they could be cardiac in nature, I find it helpful to use a little portable EKG device (Emay brand, bought via Amazon) for peace of mind.

What are your symptoms like? What makes you suspect carditis? I'm sorry your cardiologist was so dismissive! This that involve the heart can be so unsettling!

magoo2 said...
Not my experience but my doc test differently-using the meridian lines.
His clinic is called Prevention and Healing

I knew an unconventional chiropractor that did some similar things to that. I took it as good guess and went from there. He was pretty close on some things.

The OP’s gripe/vent here is about conventional doctors though. (Each of us could probably write a book on that).

Garzie said...
sometimes i think its just more comfortable for them to believe they have more answers than they do - and so if a patient describes something that doesn't fit with what they know - then they prefer to believe the patient is misreporting or making things up - rather than their 6 years of training being inadequate and lacking answers.

Hi Garzie! Ty for your response and sorry for the late response…I forgot to check the email notification box. I think you nailed it. It’s incredibly difficult to find a good dr and frankly unbelievable the way you get treated when they can’t make sense of you. “I don’t know” is a completely acceptable answer. I don’t understand the mindset there. Instead, it ends up being the patients fault and in my case, thrown in psych which did nothing but cause me more pain. Medical trauma is very real and not taken very seriously. It’s nuts. I’m currently trying to find a LLMD and it’s ridiculously difficult with my CPTSD. I’ll get there. Thanks again. It was good to learn that I’m not alone.

loski01 said...
Good dialog here already.

One add on is I’m pretty sure like 90% of my chest discomfort was Costochondritis - more common in fibromyalgia. Never heard it mentioned until I stumbled over to their forum.

Thank you for sharing that. I’ll be looking into it.

saraeli said...
I definitely have had heart issues along my chronic illness adventure, but never actual carditis as far as testing has shown.

Premature ventricular contractions - These arrhythmias were really scary when they first started! Basically one chamber of my heart beats before it has a chance to fill up, so the next beat happens with a delay and causes a heavy thump. It feels extra bad if it happens twice in a row, and it can start to hurt when it's happening often. PVCs are more noticeable when you are lying down or very full. My cardiologist said that her practice exploded with these in summer 2020 because everyone was under pandemic stress! They are harmless as long as they constitute less than 3% of heartbeats, and it's easy to count your heartbeats to determine this. These are also easy to see on an EKG, with a distinct wave pattern, but only if the EKG is taken at exactly the right moment when the PVC occurs. Lots of people have these who are perfectly healthy.

Postural orthostatic tachycardia syndrome - This form of dysautonomia makes your heart beat faster than it should when you are upright, especially standing. Some people experience palpitations, chest pain, dizziness, blood pooling int he legs, headache, anxiety, weakness, and fainting when they have POTS. You can test this by taking your pulse when lying down, and then comparing the number to your number after standing for ten minutes. If you standing number is 25 beats per minute higher than when lying down, then you probably have POTS. It's very common with chronic tick-borne disease as well as lots of other conditions like long COVID and chronic fatigue syndrome/myalgic encephalomyelitis. It does not damage your heart, and is really a neurological problem, so most dysautonomia specialists are neurologists. Medications help some people, as does licorice, compression garments, high salt intake, proper hydration (not too much or too little), limbic system retraining, and recumbent exercise. The obvious danger of POTS is fainting, and how debilitating it is not to be able to be upright for any length of time! I had this for years, and it was so limiting.

Costochondritis - Feels like an electric shock right over my heart, makes it very hard to breathe sometimes, can be mild or severe. I have had this since I was a small child due to hypermobility spectrum disorder. I didn't know what it was until my twenties, and actually was able to stop it entirely these past few years through building my chest wall muscles with yoga. I can sleep on my side for the first time in my life!

I have had several echocardiograms, and while I do have a patent foramen ovale, everything else is always healthy and unremarkable. When I experience chest pain or other issues that seem like they could be cardiac in nature, I find it helpful to use a little portable EKG device (Emay brand, bought via Amazon) for peace of mind.

What are your symptoms like? What makes you suspect carditis? I'm sorry your cardiologist was so dismissive! This that involve the heart can be so unsettling!

Thank you for sharing all this with me. Very informative! My symptoms include heart pain, weird bp readings, low BPM, extremely high BP without medication, fatigue and nausea. I take Ziac which is a beta blocker and a diuretic. I had a former doctor who told me to stop taking it without tapering because my BPMs were in the 50s-40s. It nearly killed me. On two occasions, I had acute chest pain with numbness down my left arm. I also nearly had a stroke when I was at my new GPs and promptly went back on the Ziac. Part of my visit to the cardiologist is to make sure I’m ok after all that. I believe I have dysautonomia, but that hasn’t been confirmed. I just know that my nervous system has developed a type A personality (lol) and is in overdrive a lot. I’m working on it, but I’m sure as you well know, it’s a journey. Thanks again.

".........This has been such a common theme with my care from conventional medicine doctors over the last 20 years that all I can do is laugh at this point..................."

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Unfortunately that's many peoples experience.

I really feel sorry for people who dont take the time to understand the human body and how theirs works.

Many Drs do not have diagnostic skills, and instead try to remember what they once had to remember during school, WITHOUT understanding why things happen the way they do.

(my third comment to this post......gee, how do I feel about Drs? LOL.....)

Post Edited (astroman) : 7/2/2024 8:55:09 AM (GMT-8)