Appointment with an electrophysiologist - Atrial Fibrillati...

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Appointment with an electrophysiologist

Kittyca profile image
81 Replies

Hi there, would like to share my experience after my yesterday’s private appointment with one of the leading electrophysiologists (uk, London).

Summary: nearly 20 years with PAF, mainly 1-2 episodes a year, last three years 3 episodes up to 36 hours without medication and up to 4 hours with flecainide 200 as PIP. My trigger is anxiety (stress).

Got a referral from gp to see a nominated electrophysiologist, called several times before the appointment to hospital and was promised that it would be exactly him but when arrived was offered the other one ( a young doctor which I could not find in Google) because the desired one was not in place for unclear reasons.

After the appointment with a young doctor called and scheduled a private consultation the same day with a ‘missing’ doctor. Money helped .

Appointment:

Main question: is it a time for ablation and discuss options.

Answer:

- 3 episodes a year - borderline for ablation,

- fatal cases with daily flecainide and an ablation are equal,(appr1 in 1000 in both cases). Advised taking 200 mg of flecainide asap after an episode and in 12 hours take 200mg more and again after next 12 hours until AF stops,

- doesn’t think there will be any breakthrough in medicine regarding AF in the future because since 2005 when he started doing ablations nothing has changed,

- told that after ablation my Af either be better (but he is not sure) or be the same and might be worse

- put me in his waiting nhs list (a year) but told it may be any other doctor not him( reading between lines definitely not him). Added that he usually observes the results after other doctors.

- ignored all my suggestions about possible life changes

- said taking magnesium is useless ,

- I asked how he knew which part of a heart to ablate if at the time of ablation there was no episode of Af. He answered that he always ablates the same part in all cases.

- I stressed that my trigger is anxiety and possibly if he advised something my episodes would be shorter or disappear. Answered: “ Nothing can advise. I promise you will have not less than 3 episodes in a coming year” . These words definitely don’t help to cope with my anxiety.

- has not heard anything about Wolf’s mini maze and about this doctor. Said if the results had been good, everyone would be using them .

Conclusion:

Left him with absolutely uncertainty, feeling of anxiety and lost money.

Electrophysiologist is an electrician . It seems that in my case I met an electrician who says: “Nobody exactly knows why it happened. But in your case is the best solution is to cut up several wires and hopefully your fuse will stop going out or do it not that often. I can’t guarantee that some appliances at your home won’t stop working “ .

What do you think?

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81 Replies
Paulbounce profile image
Paulbounce

Kitty wrote

"What do you think?"

Find anough EP. One that be more understanding about your feelings.

Best,

Paul

Edit - "He answered that he always ablates the same part in all cases". For real ???

Second edit.

"has not heard anything about Wolf’s mini maze ...... Said if the results had been good, everyone would be using them"

Move on Kitty ;-) I certainly would not want him as my EP.

ETHEL103 profile image
ETHEL103 in reply toPaulbounce

Agree Paul.

Finvola profile image
Finvola in reply toPaulbounce

Spot on, Paul.

Jalia profile image
Jalia

What a strange experience ! Most people who have had private consultations ,on this forum at any rate, have reported very positive results. It has left me wondering which EP you saw ??! Perhaps you could pm me ?

Particularly concerned that no importance given to lifestyle changes

It sounds like you would have got more information from the AF Association leaflets.

Could you get some help from your GP for anxiety as it will certainly not be helping your AF.

PS....agree with Paul as well. Find another EP!

Kittyca profile image
Kittyca in reply toJalia

Thank you very much, Jalia! I definitely had more information from the site. By the way, when I said that I am a member of this site and read a lot information, he totally ignored it.I don’t know if it is allowed to name him here. What are the rules?

And, yes, I have contacted my GP and certainly got advice from him regarding both AF , anxiety, how to use PIP.

Jalia profile image
Jalia in reply toKittyca

No, best not to name him here !! Certainly a very odd consultation though.I already have a lovely EP , fortunately.

Finvola profile image
Finvola in reply toKittyca

Kitty - sorry you had such a negative experience, try to put it behind you and look forward. Lifestyle changes are very important and effective - for me, it was finding what helped most and controlling anxiety was one of the main themes.

I take Flecainide as my EP felt it was the best option and he gave good advice about how to make good changes in diet and outlook.

I hope you get a better consultant who will actually listen and advise.

Personally, I wouldn't name the EP you saw on a public forum.

Elli86 profile image
Elli86

Hi kittyca.

Sounds like you need a new EP pronto. He sounds utterly useless. I see a private EP and he was brilliant. I’ve named him several times on here so don’t see why you wouldn’t be allowed to name yours? Mine was dr boon lim and like I say he was brilliant.

Hope you find someone decent asap and good luck 👍

Kittyca profile image
Kittyca in reply toElli86

Thank you Elli, I heard a lot about Dr Lim. It was my mistake I should have booked an appointment with him. But I didn’t know and followed a recommendation.

Elli86 profile image
Elli86 in reply toKittyca

You don’t know until you try so it’s hard to pick the right one. I was just lucky that he was the first one I see and was brilliant. I literally just googled the best eps in Uk and he was coming out around top of list and wasn’t too far so I booked him in. Didn’t even have to go and see him I just did it all over Skype. Roughly hour and a half convo with plenty of info sent over beforehand. Job done. Best £200 I’ve ever spent 👍

Kittyca profile image
Kittyca in reply toElli86

I have paid £250 for 30 minutes face to face. Was with my hubby who witnessed everything. To say the truth hubby was against that appointment and was right. To say the truth I also googled Dr Lim, saw lots of positive reviews and thanks. My prominent EP has only 2 reviews and one of them is a bit controversial. But I was advised that he was the best and booked him. After all I definitely need time to rethink and recharge. 😏

Elli86 profile image
Elli86 in reply toKittyca

It can be a bit of a minefield for sure. Hope you find someone better anyway and get where you want to go. Good luck 👍

ellishead profile image
ellishead in reply toKittyca

Dr Vias Markides at the `Royal Brompton Hospital is brilliant on every level and very kind

Janna24 profile image
Janna24 in reply toElli86

I also seen dr.Boon Lim privately, best money i ever spend. He is very smart and knows his area very well, brilliant !!!

Elli86 profile image
Elli86 in reply toJanna24

He is great. Really nice bloke as well. I was chuffed 👍

If you have documented episodes of AF of this duration, you should be considered for anticoagulation.

Since you ask, I don’t think you need either Flecainide or Pulmonary Vein Isolation at this stage. Your AF burden sounds fairly minor. However you do need an echocardiogram to measure left atrial size. If your LA is enlarged, that is a very different situation.Finding ways of managing anxiety is perhaps more appropriate right now.But I am not a doctor and since you have been treated with Flec for up to 3 years already, you have presumably seen a cardiologist previously.You sound like me. Very long history of paroxysmal tachycardia and anxiety. Perhaps hypertensive and with a family history of AF. AF burden increased over the years leading to PVI and LA ablation. Effective for 4 years until age 70. Now permanent AF. Only symptom is impaired exercise tolerance. Would I go that route in hindsight? In my situation, no.

I doubt a leading UK EP could be “utterly useless”. Maybe not a good match for your personality. Do you feel anything he has said is inaccurate?

Maybe a cardioselective beta blocker like Nebivolol would be helpful.

Kittyca profile image
Kittyca in reply to

Thank you very much for your answer Bill,I did an echo before the appointment and it was absolutely ok. By the way I did echo one day prior and was advised that a doctor would comment the results during my appointment. But again I had to ask to open it and comment it because a young doctor was not ready for an appointment.

As for flecainide I only tried it in summer June and July.

My gp advised me to try it. My gp is a very good and experienced doctor. He also prescribed propranolol for anxiety. What’s more I saw an absolutely brilliant cardiologist Mr Sukhjinder Nijjer. He helped a lot and prescribed rivaroxiban but to discuss and perform the possible ablation (or options)can only EP.

Gincalpe profile image
Gincalpe

Have you tried mindfulness and breathing exercises to calm anxiety. AF and what triggers it is different for each of us.

Kittyca profile image
Kittyca in reply toGincalpe

Yes, I practice mindfulness and meditation every day. It helps when everything goes smoothly. If happens something above it’s very difficult for me to cope.

waveylines profile image
waveylines

So sorry to hear of your experience. If it doesnt feel right it isnt right. Its really important you have faith & trust in your EP. You dont. I also wouldnt be keen on someone else doing the op as he says he sees the effects but doesnt do it himself.....presumably he does private ones only!!. My P-Afib has remained mild (am very lucky) & my EP was against the op for me. In fairness the cause of mine is cancer treatment so he also said he couldnt be sure how effective the op would be therefore whilst it was very mild he recommended leaving well alone. He monitors me instead. I appreciated his honesty and willingness to listen and explain.

In your shoes Id see someone else......no harm in a second opinion.

saulger profile image
saulger

Hi Kitty.

Seems like you have not been given a direction to follow.

My take on Afib:

The WMM (Wolf Mini Maze) is extremely successful if the touted 95% plus results are genuine.

If you scan the WMM FB group (facebook.com/groups/4129396..., I've read dozens of first-hand endorsements by long-term sufferers and alumni of several unsuccessful ablations, whose lives have been changed by the WMM.

The big issue is the cost. I enquired and was quoted $150,000 without insurance cover.

You are lucky that you have just 2-3 episodes per year.

I am on 50mg Flecainide x 2 and last month alone had 5 episodes that resolved after 3-4 hours.

If you are taking an anti-coagulant the risk of stroke is dramatically minimised and is comparable to the same age group (co-morbidities not withstanding).

I hope that you find another EP who is more sympathetic to your concerns.

Saul

secondtry profile image
secondtry

New EP/cardiologist to find! I changed my cardio and wouldn't go back to the EP he suggested for a consultation. Sounds a bit old fashioned but you NEED to feel confident in your medics, otherwise the anxiety can become more prevalent.

Dealing with anxiety. Change your lifestyle radically (lots of pluses in this) and consider taking both a Magnesium supplement and CoQ10 with medical/alternative practitioner approval; expect raised eyebrows from your GP!

Fibber222 profile image
Fibber222

I won’t mention actual names but I was recommended a Professor S from Barts who apparently has an extremely high success rate in ablations. In my case I have quite a few PAF episodes mainly triggered by anxiety. Please let me know if this was your man.

ETFCfan profile image
ETFCfan in reply toFibber222

I know who you mean, excellent and excellent team. My consultant is Mr Sporton, one of his team and amazing, caring and knowledgable.

Fibber222 profile image
Fibber222 in reply toETFCfan

That’s really good to know. Do you mind telling me how much you pay for consultation and how much for ablation? I heard it was a lot of money - around £15O00 but 75pc success first one.

ETFCfan profile image
ETFCfan in reply toFibber222

Mine has all been on the NHS . I was lucky enough to be referred to the team from a local hospital. I have had everything that I needed urgently done in a reasonable timeframe but unfortunately things have been held up this last year by Covid as I’m now not urgent.

Fibber222 profile image
Fibber222 in reply toETFCfan

Oh how fortunate for you getting referred to such a brilliant team. I wish you continued good care on your journey. Thank you for your replies.

Kittyca profile image
Kittyca in reply toFibber222

No,it wasn’t him. Mine is from the other main hospital

TINAHP profile image
TINAHP

As your AF is triggered by stress have you thought about taking up a stress control Technique such as say Yoga?

Kittyca profile image
Kittyca in reply toTINAHP

I practice meditation every day

Frances123 profile image
Frances123

What a waste of money for you and so sorry you were treated like that. I saw an EP privately initially and was money well spent thankfully. I’m in West Yorkshire but saw Dr Derek Todd in Liverpool (which is only about 1.30hr drive). If nearer I would have opted for Dr Lim or Prof. Schilling.I’m no medic but the bit of your experience which worried me is having 400mg of Flecainide within 24hrs. I always thought maximum dosage should only be 300mg?

I hope you get some better help soon and can put this experience behind you.

Take care, Frances x

irene75359 profile image
irene75359 in reply toFrances123

Professor Schilling was brilliant. I went prepared with notes of my (short) history of AF to date. In half an hour he had mapped out what I needed to do to, advised me against ablation at that time (my AF burden was very light and still is) and advised stopping some of the medication I had been prescribed. The advice was spot on and mostly still holds good today, more than five years later.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Are you on meds? Which ones? How is your energy levels?

As you think it is anxiety you may help yourself with yoga and/or meditation.

Can you prevent the worry?

My A.F is complex with A.F whenever I exert myself.

Recently put on Diltiazem a Calcium Channel Blocker. Worked too well and I had to reduce dose from 180 to 120. I still take Bisoprolol 2.5 at night.

Everyone needs monitoring.

How about Feccan.... in the pocket.

I dont feel my A.F and was diagnosed after a Embollic Stroke and 3 days later Thyroid Cancer which was fully removed 4 months later.

Interestingly the new drug has altered my TSH down.

Take Care

Are you sure that it starts with the anxiety or when your heart pounds you get anxious.

I had a heart rate of 120 at rest.

Kittyca profile image
Kittyca in reply toJOY2THEWORLD49

Rivaraxiban, simvastatin, propronalol in case of panic attacks and since July flecainide as pip

Singwell profile image
Singwell

Haven't read other replies but - ye gods - and you paid for this!? It's complete nonsense there's been no developments- pulsed field ablation is one of them. You asked all the right questions- you're 61 - make those life changes and find yourself a better EP.

I too suffer from poor management of stress that triggers anxiety which trigger my AF. You can change those habits although it takes work. I had ablation last April which we knew right away wasn't as they'd hoped due to movement and pain response. But my episodes are noticeably shorter, less symptomatic and I'm feeling slowly much more confident. No regrets

Everyone is different-don't give up. There's better advice out there (and here )

Singwell profile image
Singwell

If its any help - do a search on the top 10 electrophysiological in the UK and really read around the hospital's rep and the department. If its not a centre of excellence, font go there. I had a very useful private appointment with Dr Tim Betts who's the leading EP I think at the Radcliffe in Oxford. Money well spent. It was £300 for an hour

I don’t think he was very good! My EP (NHS) gave me 40 minutes to discuss ablation or not; said he induces AF when doing the procedure: that although he will have pre procedure scans the decisions on exactly what to do depends on what he finds on the day. Oh, he prioritises AF hence my early appointment for assessment (4 weeks from first referral) so expect ablation in 3 months. I was offered it 6 weeks later and panicked, had it 8 weeks later (in Covid Nov 2020, but now with Omicron, who knows what he would be able to offer?)

He thought main lifestyle changes such as weight, sleep, smoking, good diet always helped most medical conditions including AF, but in my case all good so not much help! Also supplements not proven.

Although my triggers were vagal (not stress) over time AF likely to increase and all sorts of other triggers would produce it.

I saw a well regarded private EP a year earlier and in retrospect he probably was saying some of this but so briefly, I didn’t get it, and he put me on beta blockers PIP (as had GP) - and new EP said counter indicated if triggers are vagal. Hey ho.

GP friend suggested I asked my GP for referral to this particular EP (who does no private work) because he had heard he was very good.

It is a lottery… wherever. Good luck! My ablation worked BTW

Dorchen profile image
Dorchen

Words fail me !!!! I think the doctors have lost the plot. We just have to try and worry less xx

meadfoot profile image
meadfoot

I had a similar experience some years ago. I was mortified as i had travelled to London especially to see this particular consultant at this particular hospital. It was a complete waste of time and beyond disappointing.

I chose to see another equally well known and highly regarded consultant at a different London hospital and wow what a difference. He and his team has been amazing, i have never looked back. Shop around getting a medic you cant relate too is so essential. Good luck.

Kittyca profile image
Kittyca in reply tomeadfoot

Yes, we are discussing it now

ETHEL103 profile image
ETHEL103

I had a similar experience in London with a private EP saying the same things about risks and problems after.Risk of death ect.Scared me no end.After 30 mins said I will put you on NHS waiting list .£300 gone in what seemed like a flash with not much help imo.I seriously get more help on the forums here but at least I'm on a list.Always look on the bright side of life la la la.

Kittyca profile image
Kittyca in reply toETHEL103

I am trying to look on the bright side but sometimes it’s very complicated

Slidingdoors99 profile image
Slidingdoors99

Oh my goodness what a bad experience for you. His advice was as clear as mud! Sorry that you had this experience. I’ve yet to speak to an EP, but hope when I do it isn’t this one! 🤨

Kittyca profile image
Kittyca in reply toSlidingdoors99

I think mine feels he is very important. Easily booked privately but out of reach nhs

Ppiman profile image
Ppiman

I think he spoke straight and could have been less abrupt, but what he said is broadly in line with what my EP / Cardio told me in Leicester and he's also from a leading teaching unit. I don't like to call these doctors "electricians" myself as they are highly skilled and experienced in both cardiology and electrophysiology and have had years of observing the results of both drug and surgical interventions. I have come to trust them.

I was also told that magnesium is of no use, and indeed the science shows this to be true. The other information is similar to what I've been told. The Wolff procedure hasn't been proven in practice from what I have read, but I never asked my EP about that. I do get the feeling that EPs don't leap straight in with an ablation in the UK and try drug treatments first.

Steve

Auriculaire profile image
Auriculaire in reply toPpiman

Magnesium might not stop afib attacks per se but it can help alleviate anxiety. If this is a major trigger then it may reduce attacks or help to make them less unpleasant.

Ppiman profile image
Ppiman in reply toAuriculaire

That's a good point. Again, the evidence for its reducing anxiety is slim even though I surely wish it did for me. Looking at studies, there is some slight evidence for its working to alleviate mild anxiety, but the chances of mild anxiety precipitating AF is, I'd guess, slim, too.

I do think it helps some people, and I know one person who wouldn't be without it. I take it regularly for constipation for which it is an excellent treatment.

ncbi.nlm.nih.gov/pmc/articl...

Steve

Dee5165 profile image
Dee5165 in reply toPpiman

Magnesium has been part of my supplement regimen for Afib and has kept me in NSR so I do not agree that Magnesium is of no use. Not enough studies on these supplements so I was part of my own study.

Ppiman profile image
Ppiman in reply toDee5165

I did say that some find it useful but that the science suggests not very well. There has been good scientific work done with magnesium when I last looked that struggled to show any effects.

Here is a quotation from one of several double-blind studies: “However at present, the available data would suggest that magnesium… is more myth than a practical, easy (or magical) solution to the growing problem of AF.”

I guess it’s possible however a few people need extra for reasons of poor absorption?

Steve

Auriculaire profile image
Auriculaire in reply toPpiman

Well it has helped me a lot. I had anxiety attacks for no reason that I could discern before afib started. When I started taking magnesium they stopped. The afib has not stopped but the attacks are nowhere near as alarming as they were to start off with. I don't care if the magnesium is a placebo. I think placebos are usually less harmless than a lot of the crap doctors prescribe- a lot of which would not get over the placebo line if the drug companies did not systematically suppress negative studies. I am not taking more than the recommended daily amount for women ( which is probably too low anyway).

Ppiman profile image
Ppiman in reply toAuriculaire

I think we all do similar. If it works, and it's genuinely safe, try it.

But I do rely far more on rational and scientific approaches myself. It's just my nature and my background. The placebo effect has long fascinated me as evidence of the power of mind over body. It’s surely a welcome thing in general if it weren’t for being such an individual and idiosyncratic thing. I do look in amazement that it has led to such a massive market in "health" foods, supplements, medicines, physical treatments and the like - even to whole chains of shops such as Barretts, and so many “professions” and livelihoods, so much of it based on a lack of worthwhile double-blinded scientific support.

Steve

Auriculaire profile image
Auriculaire in reply toPpiman

It surprises me that you still seem to think that pharmaceuticals are supported by "science" . There have been many books written by industry insiders and people like Peter Gøtsche (one of the founders of the Cochrane collaboration ) about the shady practices which make drugs that are little or no better than placebo look much better. Not to mention ghostwriting of articles for medical journals. Former editors of the BMJ and the NEJM have said that the scientific integrity of both journals ( the most prestigious on the planet )have been so compromised by the corruption of industry money that they are no longer reliable and one cannot trust the papers that they publish. A glaring example of this is Lancetgate . I too have trust in the scientific method. But none whatsoever that it is actually being followed a lot of the time. I have just been reading an analysis of a trial (RCT) that was done for a combo of azithromycin and Hydroxychloroquine for covid in Brazil. The conclusion of the trial was that it had no effect . But when you dig into the methodology of the trial you see that it was faulty ,and when you look at the actual figures you see the opposite - that it was effective. The same can be found for things that are supposed to be efficacious - actually digging into the data ( often buried in the appendix) they show lack of efficacity or worse ie greater overall mortality in the treatment arm. A good example of this is the 6 month results of the clinical trial .released by Pfizer for their vaccine . Buried in the appendix are the figures showing that more people died in the vaccine arm than the placebo arm whereas the conclusions are "safe and effective" How many people when looking at RCTs read past the abstract including doctors and medical journalists?

Ppiman profile image
Ppiman in reply toAuriculaire

It's hard to disagree with some of what you claim. It's more that the alternatives to the systems we rely on now simply don't exist and no system of government has yet brought about a better system. What we have is, likely, the best we shall get.

I used to wish that universities could be funded and empowered to produce all the drugs we need; but it just doesn't work. If it could be made to work, it would get my vote.

I truly doubt that hydroxychloroquine is useful for preventing or treating covid pneumonia. It is very hard to investigate drugs for this illness given that most people have hardly any important symptoms and that we just don't yet know who will develop the serious form thus making it extremely difficult to produce meaningful effectiveness statistics, even when double-blind methods are used.

What can be said for the current system is that many very serious diseases are now far more successfully treated than was the case before. Many cancers are now survivable; many childhood and neonatal problems are treatable; indeed, catheter ablation procedures have been brought to being far safer than ever before.

What saddens me is that so many chronic illnesses remain poorly treated and many drugs still in use were as old as the hills even back when I was in the industry.

What saddens me, too, is the new quackery that the internet has spawned and the inability of some people to understand that they are being taken for a ride. Billions of pounds each year are handed over to these snake-oil companies. I sometimes feel that we are losing the gifts the Enlightenment gave us and are risking a return to a reliance on myth and magic.

Steve

Auriculaire profile image
Auriculaire in reply toPpiman

Would you consider Moderna one of these snake oil companies? They were given billions to develop the vaccine by the NIH despite the fact that they had never come up with a successful treatment and the word was that they were seriously on the skids. Hydroxychloroquine has not been touted as a cure for covid pneumonia let alone ARDS. It was always promoted as a treatment to be taken at the first appearance of symptoms to prevent progression to more serious disease. The trials that showed it a failure were more or less designed to fail - giving it far too late in the progress of the disease and often at toxic levels . There have in fact been trials here in France that were showing benefit when used correctly before they were closed down when the trial was published in the Lancet showing toxicity. A trial which was later shown to be based on totally fraudulent data (despite peer review- shows how useless that can be) and which the Lancet was forced to retract. But ( surprise ,surprise) the trials that had been shut down were never reinstated. Just because something is the best we have is no reason to have faith in it and I believe the current system is actually doing more harm than good and needs a lot more regulation.

Ppiman profile image
Ppiman in reply toAuriculaire

I really don't know enough about Moderna to comment meaningfully. I was surprised when the media touted them so much and when I saw its two founders being interviewed. But I really don't know what they did and how they did it. Do you? Does anyone? Messenger RNA? Goodness, what's that? We can read all we like - but will we still know? In the end, we either trust to the regulatory bodies or we risk becoming ill with the disease.

On hydroxychloroquine, again, what can be said? Well, it is a potentially cardiotoxic drug and no one really knows how it works in the body. My wife used to take it but had to have regular blood tests and, in the end, had to stop using it.

It seems near impossible to test any drug, including hydroxyquinoline, for its effectiveness in preventing a disease that most people don't have much in the way of problems with, but enough do to put our health systems at risk of collapse. If we knew why people sometimes go on to develop serious form of covid, we'd be in a better position, but we don't.

Steve

Auriculaire profile image
Auriculaire in reply toPpiman

I read a long article about Moderna that was written before the advent of covid on a site that seems dedicated to analysis of drug companies. It talked a lot about the CEO Bancel who has no scientific qualifications but only a business background and how they went through scientific staff like a dose of salts. But they had no products that could be successfully brought to market and were haemorrhaging money. There is mounting evidence from many studies ( the best done in Israel) that vit D deficiency plays a big role in who goes on to develop serious forms of covid. The Haredi population of Israel are particularly deficient in vit D and interestingly are one of the worst hit communities in Britain too. Apparently there is some evidence that people with certain genes fare worse too.

I have read a bit about the development of mRNA and how it was to be a revolutionary treatment for cancer . But what I came away with was that it was really a therapy in the making beset with problems. I regard the mass vaccination program as a giant phase III trial. It seems odd to me that the mRNA vaccines seem to have knocked out the viral vector ones .

Personally I would never take Hydroxychloroquine as chemically it is too close to quinolones- the very first quinolone nalidixic acid was discovered as a contaminant in a vat of chloroquine.

Ppiman profile image
Ppiman in reply toAuriculaire

I think we read the same article, one in which the writer also told about the extreme secrecy in the company. I believe that mRNA vaccines have come to be the preferred kind as they are said to be more likely to confer a wider immunity to newer variants. From what I have read, the mRNA method was best with difficulties because of the instability of the RNA. What Moderna and others have found is a way to stabilise it using nano particles of fats. From what I can see, this works well, and is entirely safe. The RNA is rapidly destroyed once the "vaccination" effect has been set in motion. Of course, I am no virologist, but from what I have read, I can't see why the immune response to mRNA should be inherently riskier than any other immune response.

What will be interesting is to find out why there is a small but measurable increase in heart inflammation caused by the mRNA and, indeed, how important this is long term. Covid itself, even seemingly mild cases can cause similar effects but in many more organs, notably the heart and lungs.

Steve

Auriculaire profile image
Auriculaire in reply toPpiman

Choosing only one antigen - that of the spike protein which is the part that mutates does not confer a wider immunity to new variants. That is why natural immunity is better as immunity is generated to all the proteins of the virus and not just the spike . The lesser efficacy against the delta variant of the vaccines based on the original Wuhan strain demonstrates this. However the search for a successful corona virus vaccine using classic techniques was constantly marred by ADE arising.The dosing of the nanoparticles has been tricky finding a balance between inefficiecy and toxicity- I seem to remember in one article I read ( maybe the same one)there was something about the patented process for this and a query about what Moderna was actually using as delivery system given their secrecy. Also in the documentation presented to the EMA for Pfizer there was a question about how long the nanoparticles stayed in the body before breaking down. Pfizer did not know exactly and thought it might be several weeks even a couple of months. Nor does there seem to be any info as to how long the spike protein is produced by our cells.

I am not convinced the myocarditis is only happening in young people. There have been documented cases now in 40 year olds and I think in older people the symptoms would just be dismissed as background heart problems. Here in France the pharmacovigilance bodies are not even bothering to investigate serious vaccine adverse events in those over 50!

Ppiman profile image
Ppiman in reply toAuriculaire

I'm sure there's a lot going on that would raise eyebrows. A local chap caught covid three times and sadly a fortnight ago, succumbed. He wasn't vaccinated but must have had immunity. He was otherwise seemingly healthy.

My understanding of the nano particles is different from yours. The anti-vax brigade have done themselves no favours by pushing utter scientific garbage but as most of them seem to believe in Icke's mysteries then that doesn't surprise me. It's a shame that they have made such a hash of it as there are genuine questions to be asked.

Steve

Auriculaire profile image
Auriculaire in reply toPpiman

Given the track record of many products of the pharmaceutical and medical devices industries it is in no way " anti science" to have doubts about the claims of their manufacturers . Even if you look at the history of vaccines you will find tragedies where vaccines pronounced "safe" were not. A vaccine produced in the 60s against RSV made children who then came into contact with the wild virus sicker than if they had not had the vaccine due to the phenomenon of ADE. Two toddlers died and the vaccine was withdrawn. The latest example of this is dengue vaccine - same thing ADE and several deaths of children in the Phillipines. The government there are sueing the manufacturers claiming they knew this was a distinct possibility and did not do enough to rule it out before promoting the product.It is entirely wrong to tar those who have serious doubts about these covid vaccines ,and point out bad practice in the conduct of the clinical trials and blind eye turning on the part of the regulators ,as "anti - vax", lumping them in with the likes of those who believe in Icke's nonsense . Here in France Prof Christian Perrone is one of our leading specialists in infectious diseases. For 15 years he was head of pandemic and vaccine policy in France and number 2 for WHO Europe. Hardly an anti vaxxer but he is very critical of these vaccines and the government's policies in handling the pandemic . Jacques Fantini professor of biochemistry and molecular genetics at Marseille has just published a study the results of which he claims show that ADE is appearing with the delta variant but was not for the original Wuhan strain and the alpha variant. Scientists like this whose credentials are just as good as those in the pro vaccine camp are being dismissed and tarred with the anti vaxx label ( which let's face it is as bad as being called a racist these days) often by those who when investigated have serious financial links to Pharma. Here doctors have to declare any money they get and who they are getting it from and this can be looked up on a website. Many of the "télétoubibs" as we call them here - that is the doctors and professors who are constantly invited onto the rolling 24 hr news programs to pronounce on the pandemic and cheer lead for the government's toute vaccinaliste policy- have received very large sums of money from the companies who have produced the vaccines and Gilead the manufacturer of Remdesivir. Those who have doubts and can put forward reasons for these doubts are just not given a platform . There is no scientific debate simply authoritarian pronouncements. This is not science.

Dee5165 profile image
Dee5165 in reply toAuriculaire

Magnesium has been part of my supplement regimen for Afib and has kept me in NSR so I do not agree that Magnesium is of no use. Not enough studies on these supplements so I was part of my own study.

Threecats profile image
Threecats in reply toPpiman

That’s interesting what you’ve been told about magnesium. Presumably some parts of the NHS regard it as useful, as when I was last in A&E with AF earlier in the year, I was given a combination of magnesium and Bisoprolol as a drip to bring my heart rate down, even though my blood results didn’t indicate I was low in magnesium.

Ppiman profile image
Ppiman in reply toThreecats

Hi - my apologies if I wasn't clear. I was only referring to oral forms of magnesium available over-the-counter. The medical administration of intravenous magnesium is entirely different as it bypasses the gut and acts directly on the heart where, I gather, it affects ion transport mechanisms involving calcium and potassium also.

When taken orally I understand that only a tiny amount is absorbed, with the vast majority being excreted unchanged by the gut. Whilst there's no medical evidence of its having any effect on cardiac arrhythmias, it seems to help some people and it is a very safe thing to take.

Steve

Auriculaire profile image
Auriculaire in reply toPpiman

If intravenous magnesium works because it bypasses the gut then would skin absorbed magnesium not work too?

Ppiman profile image
Ppiman in reply toAuriculaire

That’s a good thought! Some people claim it does. Some magnesium is absorbed orally, however.

Steve

lucillear profile image
lucillear

I changed EP as had no confidence in the first one i saw. He prescribed 3 drugs i hadnt had before and i suffered a major allergic reaction. When I saw him afterwards he yawned through the whole consultation and made light of my situation. Never went back. My next Ep was the total opposite and really listened. I had my first ablation in 2017 and a touch up 3 weeks ago so far so good.

Auriculaire profile image
Auriculaire

Magnesium supplementation can help reduce anxiety so if this is your major trigger it might reduce the attacks or help with the severity of them. Several posters here have said it helped them. Your afib burden at 3 episodes a year is not that high and if you can make lifestyle changes that reduce your anxiety you might not need an ablation at all. If flec reduces your time in afib to 4 hours and your heart is not enlarged that is fairly positive and there is no guarantee the ablation will make things better. Since the beginning of Jan 2020 my attacks have increased in frequency from very rare ( 5 in 5 years with 2 of those years completely free) to 7 last year and 7 this year so far. I am not contemplating an ablation but might if the episodes came more frequently or were more severe. Your EP experience sounds awful and if you wish to press ahead with an ablation you definitely need to find someone more sympathetic!

belindalore profile image
belindalore in reply toAuriculaire

More sympathetic and more knowledgeable. Sounds like another Dr, as I like to say, who should go dig ditches somewhere.

Tomred profile image
Tomred

sounds to me like he has a job to do this way or no way, look for another

Jajarunner profile image
Jajarunner

Gosh! How disappointing. I've seen many of the EPs from Papworth hospital and they are all excellent. Happy to discuss everything with you, no matter how way out. I saw one privately and the others on NHS. They were Drs Agarwal, Mellor, Begley and Finn. A friend says good things about Dr Heck too.

Good luck.

LindaDaisy profile image
LindaDaisy in reply toJajarunner

I’ve always been very happy with Papworth. My EP Professor Grace was great but has retired from clinical practice to concentrate on research and he has passed me on to Dr Mellor. So I’m glad to see you think he is good.

Kittyca profile image
Kittyca

Thank you very much to everybody! The support I have received from this forum is huge!Today at 3 am I got episode of Af as my EP promised. It only proves that anxiety is a serious trigger and in my opinion EPs must take it into consideration. What’s is interesting the motto of this hospital is Patients know best. Lol

Jimmy37 profile image
Jimmy37

Sorry ,read your unfortunate account with an electrician and fell about laughing. There are different types of ablation for different heart problems. AV node is one used for persistent AF. Good luck in your future quests.

TM93 profile image
TM93

What a horrific physician! So sorry you had to experience that. My electrophysiologist here in the US. did an ablation for me, PAF with more frequent episodes than you, and it worked for four years. Now I am having episodes but less frequently. I revert out in a few hours using Metoprolol as a PIP. In response to your question about area of the heart, the Doctor told me at the time that there were 4 areas of the heart that he needed to freeze. I guess I assumed by that statement that he was able to identify the problem spots.

MarkS profile image
MarkS in reply toTM93

As you appear to have had a cryo ablation - that only works on 4 areas of the heart which are the 4 pulmonary veins! If you need ablation of other areas you need an RF ablation. I had a cryo ablation for 3 of the PVs, the 4th was too big so that was RF plus another 2 areas that were trigger points. It's sorted my AF for the last 11 years.

Bennera513 profile image
Bennera513

My EP was similar to yours,...rather abrupt and convinced ablation was the proper route but willing to treat with PiP or chronic dosing as long as I preferred it. In the end, he proved to be right and the episodes quickly increased to the point where I became a bit desperate for the ablation. It all came down to one statement of his in response to a long winded search for confirmation and assurance...."Your best chance at NSR for the longest period of time is ablation". I found that he was distilling all my qualms and reservations and current state and prognosis, as well as his professional experience and research with others,..into this single statement and I decided to trust him.

Like you I'd be concerned that someone other than the person you've accepted would be guiding the catheters, etc. Also like you, that blurb about things potentially becoming worse! Yea, not so much into that, but it's a fair assessment. No guarantees, only probabilities. In my case things appear to be working out post ablation but there are some things to 'deal' with that were unexpected despite all my previous research. Unfortunately, I think most of us get to our wit's end,...we get driven up a tree, it's a trial by fire and we get desperate for relief ,.....and only then is a decision like yours self evident....there is no question. But we must discover it for ourselves only after our condition worsens. 3 events per year,...I was there and at that point popping a flec worked really well. When I was in and out of AF before I could pop said flec, and or having episodes on successive days? Anxiety pouring over everything in my life.....It was time, decision was simple. Since you are not at this point yet, but all signs point to a future ablation, maybe now's the time to align with the 'right' EP. One who doesn't leave you guessing or feel so 'left to your own'....?

Kittyca profile image
Kittyca in reply toBennera513

Thank you very much for your answer. My situation seems very similar to yours. Ectopics far in advance of Af, highly stressed job, overweight (it’s different), very active ( nothing was impossible) and anxiety for ages. AF at 43.Last morning received an episode which again proves that triggers exist and EP has kept his promise. Before seeing him no episodes for 5 months, meditation and mindfulness which definitely worked . Trying to forget this awful appointment but it difficult, sitting inside of the head. What’s more he made us to take of face coverings. My husband is nearly 70 with diabetes etc. omicron news everywhere, lots of people inside of his office before us, as we were last in the queue…….. Such a dreadful experience , which worth a new episode, covid health risk and £250……

Jalia profile image
Jalia in reply toKittyca

...and you had to take off your face coverings! It gets " curiouser and curiouser!"

Kittyca profile image
Kittyca in reply toJalia

Yes, and from the beginning of the appointment I felt a bit confused. Why did he do it? He had spent the whole day at hospital communicating with lots of people, before us there were lots of other patients inside his office, the distance between us was 1 metre not more, windows were closed and my husband with several health issues. It was inside of my head all the time. Especially with omicron news and restrictions.

Jetcat profile image
Jetcat

Don’t be too disappointed kitty, see a different EP you may get a total different view👍

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