I have developed an arythmia

vision blue

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@Gingergrrl we have alot in common on how it presented itself As im reading this whole thread im again surprised how many have something similar. Atenolol is used for supraventriculyr tachycardia. Interssfing the IG helped you. Been debating that. Still on it?

To the OP, just because you reacted worse to potassium does not mean potassium wasnt the problem. I get low in potassium easily (verified by blood test) but if i try to take potassium , my heart goes bererk. Was tricky when i was in the ER not letting them put potassium in the IV. Think it would have literally killed me. You can look on your ekg for signs. It tends to make the u wave more prominent and sometimes a bit of ST depression. Normally the u wave isnt all that visible on Lead I so other keads are better for ibspectiin but ive found whwn potassium low enough i start seeing noticeable u waves on lead 1 also.

Havent read thry all the posts yet
But
@YippeeKi YOW !! Thanks for the shoutout on my avatar, especially when youre feeling sick! . I will hope the waves bring you remedy quickly. Knew if i kept at it id come up with one youd like! If the eye doesnt look right i can tweak that
 

Gingergrrl

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@Gingergrrl we have alot in common on how it presented itself As im reading this whole thread im again surprised how many have something similar. Atenolol is used for supraventriculyr tachycardia.
In my case, I take Atenolol for POTS (which for me is sinus tachycardia) but I know that Atenolol & beta blockers are used for many different things.

Interssfing the IG helped you. Been debating that. Still on it?
Not at present and I got IVIG for two years from mid 2016 to mid 2018.

Was tricky when i was in the ER not letting them put potassium in the IV. Think it would have literally killed me.
This is similar to me except in my case it is w/magnesium. I have autoantibodies that block the calcium channels and I do very poorly with calcium channel blockers including magnesium. I got flash pulmonary edema from IV magnesium in 2014 where the infusion center had to rush me to the ER and it could have been fatal (but thankfully was not)!

You can look on your ekg for signs.
Do you have a specific website or guide that you use to interpret EKG's? I have one irregularity that shows up on (almost) every EKG that I have done since 2014 but I have been told by every doctor that it is nothing to worry about.
 
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Thanks for the shoutout on my avatar, especially when youre feeling sick! . I will hope the waves bring you remedy quickly. Knew if i kept at it id come up with one youd like! If the eye doesnt look right i can tweak that
No dont change a thing !!! The eye manages to be friendly and inquiring rather than spooky. I'm really impressed with what you created ....

Now back to bed. Maybe some chocolate. Possibly some sleep, which would be really nice ....
 

Garz

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i have arrhythmias - also mainly at night - also often normal when checked on an EKG for 30 seconds - or just diagnosed mild "ectopic beats" and regarded as no issue

i just skimmed through most of the posts

just wanted to say that my severe CFS with PEM and arrhythmia and POTS etc turned out to be caused by tick borne infections - in my case Lyme and bartonella have been confirmed - and i am now treating appropriately and about 60% recovered - eg i can workout 3-4x a week

the symptoms you mention:
-severe fatigue
-POTS
-waking up in the night with racing heart
-stiff neck
-vibrating sensations in the body

are all hallmark symptoms of tick born infections - particularly lyme and bartonella
vibrating sensations in the body are a particular hall mark of bartonella.

it took me 5 years of digging, pushing doctors for tests, getting fobbed off and doing my own research to finally get a proper diagnosis.
the fact is most people with Lyme are told they have CFS after primary care doctors find nothing else wrong with them - that's exactly what they told me - even sent me for CBT and pacing training.

Even when asked if it could possibly be lyme -conventional doctors routinely trot out lines like "we don't have that around here" even when there are dozens of studies showing that they very much do!
its an absolute travesty of misinformation and miseducation.

because of this routine misdiagnosis - and preference of PCP's to put CFS on the form as diagnosis rather than the contentious diagnosis of lyme - or suspected lyme - its likely that a significant subset of CFS sufferers actually have tick born disease.

Anyone can get it - even in your own back yard - you do not need to have had a bulls-eye-rash( only 30-50% of people do) or any symptoms at all at the time of the tick bite. and most humans who get bitten by ticks are bitten by tick nymphs - which are smaller than a poppy seed - so you are in fact unlikely to see it.

if you do/did outdoor activities or have contact with animals you are at greater risk

testing is still problematic - but some testing companies are better than others
in North America - Igenex is about the best place to start

this questionnaire was made by one of the leadings Lyme Doctors - Richard Horowitz MD
in an effort to help people judge their likelihood of having the disease based on symptoms and exposure
https://doyouhavelyme.com/online-test-form/

if you would like more info - or support - please ask here - its a welcoming and knowledgeable community of fellow sufferers - some of them in Canada
https://www.healingwell.com/community/default.aspx?f=30
 
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vision blue

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In my case, I take Atenolol for POTS (which for me is sinus tachycardia) but I know that Atenolol & beta blockers are used for many different things.



Not at present and I got IVIG for two years from mid 2016 to mid 2018.



This is similar to me except in my case it is w/magnesium. I have autoantibodies that block the calcium channels and I do very poorly with calcium channel blockers including magnesium. I got flash pulmonary edema from IV magnesium in 2014 where the infusion center had to rush me to the ER and it could have been fatal (but thankfully was not)!



Do you have a specific website or guide that you use to interpret EKG's? I have one irregularity that shows up on (almost) every EKG that I have done since 2014 but I have been told by every doctor that it is nothing to worry about.
I used several
Simple books at first and now (theres so many and theyre all about the sane) usr the web alot for more details. Eg ive had “non specific ST segment” abnormality which gets ignored so i’ll just look that up


Do you know what kind of abnormality theyre ignoring? Would be happy to look at it at contribute my two cents (which nay be more like one cent)

By atenelol i only meqnt yes its used for arhythymmias too since you mentioned you didnt know if it was.

That is really i teresting on your autoantibodies to calcium channels. Kudos to whoever figured it out. Some good neuros thinkn”channelipathy” but few do.
 
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vision blue

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@Garz which tests turned up
Positive to confirm your tick bourne illness? I get the vibration also- did not know thar was a symptom of bartinella. Do you know what the mechanism of that might be.

. A few months ago decided to do some testing with Igenex- had used them before a few years ago. urinf both urine and blood , igg and Igm (as felt like had a recurrence). Nothing on igm or urine but igg for lyne babd 31 was positive (sane as seceral years ago) but i terestingly two further babds werw equivicol, boty pretty damn specific. But even by igenex standards, that was considered a negative result Still though discussions on web say thAt kind of result is suspicious for lyme Bartonella negative which was disappointinh because years ago it showed up in my microbiome on skin and nose and throat.

Is it possible the list you gave holds true for any infectious disease? I remember a cardio said once to me Coukdnt diagnose dysautonomia until inwas rid of all infectious diseases as it causes the sane cardiac symptoms. (I do get a recurrent herpes virus)

Woukd anyone want a thread where we post Kardia or other EKG traces?
 

Gingergrrl

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Do you know what kind of abnormality theyre ignoring? Would be happy to look at it at contribute my two cents (which nay be more like one cent)
I'll come back and post it later and would be very interested to hear your opinion. I never got the sense that my doctors were ignoring it vs. they truly did not think that it was anything serious (and hopefully this is true :eek:)! When I find the EKG's & my notes, I can explain it better :)

By atenelol i only meqnt yes its used for arhythymmias too since you mentioned you didnt know if it was.
Thanks for explaining and now I get it!

That is really i teresting on your autoantibodies to calcium channels. Kudos to whoever figured it out. Some good neuros thinkn”channelipathy” but few do.
I was incredibly lucky that this was found (the calcium channel autoantibodies) b/c it led to a proper diagnosis & treatment. The Neuro who ran the panel that found it was a truly horrible person and refused to help me. But thankfully my main doctor understood the results and knew what to do with them and I am forever grateful to him.
 

GreenEdge

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@xebex About 3 months ago, I had chest pain and increased heart rate both while trying to get to sleep. At the time I wasn't totally comfortable with taking cannabis oil (even after 6+ months usage) so it's possible it was a slight panic attack, but I did have chest pain and it became quite a concern when it extended down my left arm. I took Niacin aka. nicotinic acid (not niacinamide) to dilate the blood vessels. It helped a little and I either fell asleep or it completely settled down (all I remember is it lasted about a hour). The following night it ocured again but was not as bad and the third night about half as bad. I didn't get it anymore after that so the Niacin seemed to do the trick.

I really hope you get better soon.
 

Garz

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@Garz which tests turned up

Positive to confirm your tick bourne illness?
as you know there are no ideal tests for lyme - and due to this fact the picture gets pretty complex quite quickly.
so, rather than being put off by the complexity, i did a lot of research into available testing;


for lyme -

about the best test lab in Europe is Armin Labs in Germany

they do not make any of their own tests - but use accredited tests from accredited manufacturers

they have a test called Tickplex made by a Finnish company called Tezted.

its notable because it uses antigens from European strains of borrelia as well as borrelia burgdorferi sensu stricto

it also has antigens for round bodies or persister forms of the bacteria - which are different

(as opposed to most lyme serologic tests - that use only lab strains of USA sourced borrelia species eg Borrelia Burgdorferi B31 strain - which was not taken from a human patient, and only motile forms - which is not how they live in the body)

i read the validation studies the Finish manufacturer published in Nature and i contacted the lead author to discuss them to ensure i fully understood the sensitivity ad specificity calculations.

Based on this i found a positive tests, such as mine, with both IgG and IgM positive had above 90% positive diagnostic value.

this combined with my extremely lyme-like symptom pattern and an extremely low CD57+ count (often present in chronic Lyme ) raised the likelihood of a true positive higher. presence of another arthropod borne infection - see below - raises the likelihood further still.


it should be noted that many lyme tests are still negative in infected persons - there are many reasons for this that would take too long to go into here - but for instance there are in the wild many more species of borrelia than we have tests for and more are being found all the time, something like 20 species so far - and also a further 15 or so Relapsing Fever type borrelia species - which may present exactly like lyme disease. this may be the reason for many people having partial positive results on western blots.

Its also not well appreciated by the patient population that according to published studies - the instances of false negatives are 5-8x higher than false positives. So there is dramatic asymmetry in testing – such that a person with a positive test result and a negative test result would do well to consider the false negative at least 5x more likely( rather than an instinctive - “well, I had one positive result ad one negative result - so its 50/50”)


bartonella testing is even more problematic

  • serologic testing is so poor it has been withdrawn from clinical use by the UK NHS. the reasons for this are not fully researched - but its clear that serology is positive in only a small % of those demonstrated to be infected by other means. immune suppression by the infection - and wide diversity in bartonella species and within species genotypes and their resulting antigens both have significant evidence supporting them as possible explanations. If your body has made antibodies to the specific phenotype antigen that the test uses - you may still test positive - but studies indicate this is only in a small number of cases - perhaps 25% max
  • standard PCR testing is also very low sensitivity - mainly because the organism is not evenly distributed in the blood of infected persons as is typically assumed (see image below from bartonella specialist and Harvard educated MD - Robert Mozeyani) -so is not reliably found in the sample is a known issue.
the short answer is - after years of digging - i finally diagnosed myself with bartonella based on microscopy.

to explain further - the standard mantra in infectious disease circles is that bartonella is too small to visualise directly with light microscopy, which is kind of true, and as a result you will not find the following information in any medical test book.

however Bartonella is known to reside inside red blood cells - and when doing so it creates a vacuole around itself ( this part is well documented in the scientific literature) - what is not commonly understood is that when the red blood cells are stained with an appropriate dye - the vacuoles can be clearly visualised using a laboratory grade microscope, as a ring of clear spots around the periphery of infected red blood cells. no other organism infects red blood cells and causes this pattern and as a result this presentation is 100% diagnostic.

it is time consuming and not all slides will show infection - due to the clumping of infected cells described by Dr Mozeyani - so several slides must be carefully inspected.

the advantages are

  • this is a direct test method - infection can be physically visualised - not a secondary marker
  • it requires no patient immune response / antibodies to be formed ( immune responses are variable)
  • or selection of test antigens to match patient species or strain - all bartonella present this way.
other signs and symptoms in the slides can also support the diagnosis -

  • prolific coloured biofilms are visualised with the same technique ( bartonella causes fibrin deposits )
  • distortions of red blood cell structures / membranes, also indicates intracellular infection
  • platelet aggregation can also be seen - again indicative of infection / inflammation
the below slide is an image of the blood of a bartonella infected patient of Dr Mozeyani

note the cluster of red blood cells with rings of clear dots (vacuoles) inside them





i tested negative for bartonella via conventional serology – even at specialist Tick born testing labs ( se issues with testing above ) and yet my blood had prolific infection with bartonella.

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I also had the other signs visible in bartonella patients – blue staining fragments of fibrin/biofilm and platelet aggregation

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]

This form of microscopy could be of great benefit to bartonella sufferers around the world - as other forms of testing are either so poor as to be almost a total waste of time - or so expensive they are out of reach of many who need it. As a result, i am contemplating setting up a testing service to provide it direct to patients via mail order.
@Garz I get the vibration also- did not know thar was a symptom of bartinella. Do you know what the mechanism of that might be.
The well-known Yale trained lyme doctor Steven Phillips MD - has presented that he finds this buzzing / vibrating internal sensation - almost unique to his bartonella patients.
anecdotally - you will see it mentioned by many diagnosed bartonella sufferers in Lyme / Bart support groups support groups

eg https://www.healingwell.com/community/default.aspx?f=30
and
https://www.facebook.com/groups/1104493829902071/

research is lacking on the mechanism that causes it - but it should be noted that bartonella is known to cluster around nerve fibres in tissues in infected persons (see confocal laser microscopy work by Marna Ericson PhD on tissue biopsies) - and is known to cause inflammation wherever it resides.
bartonella is also known to cause neuropathies in many of the persons it infects - everything from palsy of nerves in face or arms to gastroparesis, to small fibre neuropathies. neuropathies can present as pain, burning, tingling, numbness or buzzing sensations - so i would guess that something like this is likely at work.
this may be a direct effect or an auto-immune mediated effect - as bartonella is known for causing auto-immune disorders in infected patients.
 
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vision blue

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@Garz All interesting and reasonable reasoning

To make sure I didn't misinterpret, in your case,
Positive diagnosis of Lyme was based on positive IgG and IgM on TickPlex made by a Finnish company a long with low CD57+ On a standard lymphocyte subset panel

And bartonella diagnosed by visualizing vacuoles in red blood cells by light microscopy using a special stain

Correct?

(And the guess for vibration was related to nerve inflammation)
 

vision blue

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@Gingergrrl i didnt meqn to suggest the doc was blowing you off or anything, just that quite frequently it is the “standard of care” to consider some test changes as not significant or not worth pursuing- not doctor negligence . But then when you look at the literature , you see so much is known about the result but that public health groups decided wasnt cost effective to pursue (or was based on very old literature and no one bothered to update the recommendation) and sometimes quite important.

For exampke, when i look up my “mon specific ST abnormality, possible digoxin effect “ (no never took digoxin) there is so much info and the best work argues it shoukd not be ignored and ned to look closer since causes range from benign to tbings that should be treated now)
 

Garz

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@vision blue
yep - but each tick borne infection detected also raises the probability of others being present and reduces the probability that tests for those are false positive - so the independent finding of bartonella - also increases the likelihood the Lyme is indeed a true positive

i just wanted to try and give the full picture - because so much misunderstanding exists around tick borne infections and in particular the diagnostic testing for them.

have seen several times here on this forum - this expressed as -
"the testing is problematic/unreliable - therefore i have to discount all test results"
or even
"the whole lyme thing is bogus - testing is flawed - chronic lyme doesn't exist"

this is gross misinterpretation of the available science on the subject - but because the scepticism - i wanted to show bit more of the story with pictures etc.

i am sure a significant portion of the CFS community are affected by arthropod born infections -
there are published studies in the UK that show most confirmed lyme patients are first given a CFS diagnosis by GP's
and there are further studies documenting that the UK GP's admit, when questioned ,that they would rather put CFS on the patients notes - rather than Lyme - even if the signs point to Lyme - because its still seen as a contentious diagnosis - and the GP's fear potential consequences if they even mention it. whereas they cannot be faulted for putting CFS as that's accepted and there are no tests for it to prove them wrong.

if those people only go down the CFS route - they may never find out - i wasted years of my life doing exactly that. that's the reason for posting, to try and help some people avoid doing the same.
 

Garz

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@Garz

.... using a special stain

Correct?
actually, the dye is not super special - just Giemsa stain - its the same as used for malaria around the world - its actually old technology - just one that has gone out of favour because its time consuming and cannot be easily automated - not because it doesn't work well
 

Gingergrrl

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Do you know what kind of abnormality theyre ignoring? Would be happy to look at it at contribute my two cents (which nay be more like one cent)
I'm sorry for delay and found my EKG & notes (and my most recent EKG was in Sept 2022 w/my new PCP).

The abnormality on my EKG's is called a "short PR interval". My PR interval on my last EKG was 108 ms and it looks like the "normal" range for the PR interval is 120 to 200 ms. Although I found a few things online with slightly different "normal" ranges.

I've had this abnormality show up on EKG's since 2012 when I had severe Mono (and maybe earlier in my life but I just didn't know)? Every doctor (Cardio, PCP, other specialists, etc) has said that it's nothing to worry about unless it's in conjunction w/ another abnormality which I don't have.

If I had the other abnormalities, too, then it would be "Wolff Parkinson White Syndrome" (WPS). But in my case, they all said that I do not have WPS and they referred to it as "a short PR interval on an otherwise normal EKG".
I do have POTS (that is basically in remission now) but this is a totally separate issue.

@Gingergrrl i didnt meqn to suggest the doc was blowing you off or anything, just that quite frequently it is the “standard of care” to consider some test changes as not significant or not worth pursuing- not doctor negligence .
Thanks and that totally makes sense!
 

GreenEdge

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@xebex Just curious, did this start with a second dose of a mNRA COVID-19 vaccine?
BMJ said:
New study updates evidence on rare heart condition after covid vaccination
  • Number of cases low and predominantly mild
  • Young males at highest risk shortly after second dose, suggesting longer dosing intervals might be beneficial
  • Findings must be considered alongside overall benefits of vaccination
A study published by The BMJ today provides an up to date summary of evidence on the risk of heart inflammation (myocarditis and pericarditis) after mRNA vaccination against the covid-19 virus.
The review of more than 8,000 reported cases from 46 studies by researchers in Canada confirms previous reports that myocarditis is rare, but cases are highest among young males shortly after a second dose, and are probably higher after Moderna’s mRNA vaccine than after Pfizer’s vaccine.
It also shows that, while cases are predominantly mild, the risk of myocarditis or pericarditis might be lower when the second dose is given more than 30 days after the first dose.
However, the researchers warn that, in general, the evidence is of low certainty and say these findings must be considered alongside the overall benefits of vaccination.
...
 

vision blue

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@Gingergrrl Interesting. So the p wave reflects the atrium and the QRS complex the ventricular depolarization so the shortened pr interval means the trevelling of the impulse from atrium to ventricle is faster. Ite not usually covered in intro ekg books so my knowledge is especially limited

This is i teresting
https://www.ahajournals.org/doi/abs/10.1161/01.cir.5.5.693
As they argue ite an autonomic thing and goes along with bouts of tachycardia. Maybe its not completely unrelated to pots? I only read the avatract but the article is open access if younwwnt to read while thing and see if it seems relevant

Interestingly, i first noticed heart symptons after i had a bug too- but was bacterial sore throat (strep viridins). Mild for me (severe for my mother) but left me with heart sensations i never gad before tbough my EKG was always normal until my dysatonomia clearly started which was caused/triggered by a virus.

Any evisence of PACs? Either on ekg or sebsation? Thise can apparently also cause shortened PR

Theres a bunch of sites that go through all the possible causes which seem worth looking at as the docs will only attend to the severe ones- what they consider severe

Besides the piors induced twchy, do you have any other symptoms relatable to heart?

Im dragging my feet reading an article thats relevant to me because discusses mortalitty and other bad events but ever since i got the 6 lead kardia (before i had a one lead)?and can take it when i have symptoms abd compare, am noticing several things including increased voltage in aVL which seem like they are a bad sign (especially one little known academic paper) One of my docs agreed to try to get past the gatekeepers and get me a televisit with cardio Im sure they wont answer my questions but wirth a shot. Will ask too if there something i can twke jusr intermitwntky to lower heart after load based on what im reading so far.
 

xebex

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@xebex Just curious, did this start with a second dose of a mNRA COVID-19 vaccine?
No I’m not vaccinated but I did have Covid a couple months prior, I see no correlation infact I actually started to improve after Covid weirdly. I was doing vagus nerve stimulation which pushed my HR up so I then took an oral rehydration solution which made my system go totally nuts and landed me in ER.