Would like opinions on cardiologist

Hello Wonderful People,
I am asking for your opinion of my cardiologist. I may have mentioned before that I had 2 afib episodes in the past 7 or so years. First time, I was cardioverted by meds and admitted for 5 days. Second time, I was shocked twice to NSR in the ER. Since the first time, my doctor had me on Warfarin and Sotalol, later switched me from Sotalol to Atenolol. I am vagal, I believe, since both episodes awoke me from sleep. In between the episodes and after the last episode, last year, I am plagued by ectopics and runs of tachycardia almost every day, all day. Sometimes the tachycardia makes me feel lightheaded. So uncomfotable.

I desperately, deperately want to get off the Warfarin and get on the nattokinase, fish oil, and vitamin E regimen. I asked my cardiologist to get on her computer and read about the natto since she never heard of it. I copied several reports about nattokinase, put them in her hands, and asked her to read them. She said she read the reports and refused to take me off the Warfarin.

Ok. Different tactic. Since she said my echo showed no plaque in my heart arteries, and the problem was electrical, would she refer me to an EP? She sent me an e-mail saying "The EPs would be interested in you only if you had recurrent afib and failed several medications. I am sorry to say that the ectopics, although bothersome to you, would not be readily treated by the electrical doctors. You could consider a medication to calm them down. Something stronger than the Atenolol. Let me know."

I just want to know if I am being overly critical of her. I would like to get a second cardiologist's opinion but I am in an HMO and they all know each other. I could go to another city, but I don't drive anymore. When I talk to her about the magnesium, potassium, taurine as well as fiber, probiotics, enzymes, she looks at me as one would to a child.

I'm tired of being scared about bleeding to death, not being able to eat all the green veggies, not being able to drink cranberry juice, etc. etc. because of the Warfarin. Jackie, how did you ever convince your doctor about the nattokinase?

Sorry this is so long. The magnesium has helped so much in making the ectopics not so hard on my chest. The potassium is to follow as soon as I receive the powder. I know I asked this before, but can I start the taurine, 1000mg, right away? I would appreciate any comments, critiques, opinions. Am I being too hard on her?

Thank you.
May

Hi May, I'm no MD so I cant really offer medical advice. And there are many others on this site who are much more educated about supplements, etc than I am, so I will leave that to them. I will say, it is your body and your health so you must do what you think is best.

The MD's are there for advice, but the decisions are yours alone. Keep in mind that they must adhere to certain protocals, and that they are practicing defencive law, as much as medicine. There are so many malpractice lawsuits that MD's dont dare stray from the predetermined steps the AMA tells them to follow. Anyone seeing a DR about afib is immediatley put through these steps. When I was first diagnosed, I was put on Cumadin, and atenelol. Both of which made my health worse. I have been off of both for 5 years now. Unfortunately, these DR's were trained probably 20 years ago, with information that was 20 years old at the time. The FDA and AMA are so slow to change, your treatment is probably based on information from the 60's. Most don't even acknowledge thet there are different types of afib, and that treating Vagal afib with drugs meant to help adrenogenic afib, will actually cause your condition to worsen.

All you can do is dive in and start learning for yourself what options you have. Luckily you have come to the right place. Start with the FAQ's, read the archived forums and discussion Sessions. Try Hans' books, they will enlighten you. Also, ask Jackie, a frequent poster here, to send you her Observational Report. It is a very informative paper, outlining how the electricla systems of the heart function, and what nutrients are requited for it to work properly. From what you said about your symptoms, I think there is a very good chance you might control your afib with proper nutrition.
Also, you are very lucky to only have had 2 afib episodes, many here, like myself have them much more frequently, if not permanently. Good luck and better health to you

Curt R 7 years Vagal afibber

May

In 2003 I was in longterm persistent AF, life was not worth living and I was considering going to Bordeaux for an ablation. At various times I asked three EPs here in London if THEY would have it done. All three said a big loud "NO" - they said it was experimental and risky.

I had done many many hours of research. I went anyway and have now been in sinus rhythm for over 7 years.

I agree with everything Curt said - it is your body and your health so you must do what you think is best. But you have to do the research first.

Gill

May - we all need to do plenty of our own research so that we have a good understanding about what we want to happen in our body as a result of various treatments offered. Because we have become such a litigious society, physicans are forced to cover all potential risks and unfortunately, that often means overmedicating as a result.

I was not able to use warfarin long-term because of low platelet count and had a difficult time regulating the INR. I began to learn about alternatives and did a lot of research. I traveled to an Anti-Aging convention specifically to learn all I could about the enzyme, Nattokinase. I queried every supplier there and as many doctors as I could who were conversant on the topic. I corresponded with others doing similar enzyme research and managed to buy several audio tapes of presentations on nattokinase and other fibrinolytic enzymes. Eventually, I made contact with Ralph Holsworth, DO, who is the US nattokinase expert and he really filled in my education on the purpose, safety and efficacy of the nattokinase enzyme and as a result, I posted the two Conference Room Sessions (39 and 40) on this topic. I have used NK myself for about 9 years.

As I mentioned in the Calcium post (thread by Isabelle), I chose not to continue using warfarin and enlisted the cooperation of my cardiologist. It has served me well... in that I had a clot form in the Left Atrial Appendage after a cardioversion post-ablation... I was already off the requisite warfarin but back on the nattokinase. I didn't learn of the clot until 5-6 weeks after it was spotted on the CT scan so I have to say, most likely, it is responsible for my survival without incident. For that, I will be eternally grateful.

As for the other supplements, potassium and taurine... start slowly with low doses of both so you know when it begins to help and at what dose.
Lower and slower is always better for a dosing regimen.

If you have not already received my Observational Report, please email me and I'll be glad to send.

Jackie

Dear Curt and Gill,
Thank you. You are right. I have a lot of reading and research to do. I have been reading a lot of the old forums and conferences. I'm just afraid that if I do not follow my cardiologist's directions, I will not be able to see another one. Remember, they're all in the same group. And she still will not refer me to an EP.

Curt, I have titred down from 50mg atenolol per day to 12 1/2 per day. What did your cardiologist say when you went off the coumidin? What are you on now, if you don't mind my asking?

Jackie, I did get your Observational Report. Thank you. I've printed it out and am getting ready to absorb it. Whatever happened to the clot? Did it get dissolved by the nattokinase?

Thank you again for your insights and advice. I knew I would get help here.

May

May, do you live in the US? Please tell us where? Email me privately if you would rather. I just want to know where it is that one can only visit one group of cardiologists. There are very few medics of any variety here in the backwoods of Maine, but recently when i was not well pleased with the only 2 urologists in my county, my own PCP referred me to several in the surrounding counties. In a real pinch i could conceivably have traveled to Boston to find one who spoke english as a first language and was not given to petty temper tantrums on first aquaintance.
PeggyM

May - The clot obviously disappeared. The cardioversion came first. A week later, I had the CT scan to rule out stenosis but the actual radiology report that contained the statement about the LAA clot wasn't flagged so I didn't find out about it until much later when I received a copy and saw the notation. I called the EP then and we all assumed that the nattokinase had done it's lysing job since I was alive and well then and have remained so for many years hence. Jackie

Hi Peggy,
I go to an HMO in Oakland, California. They have a cardiology department where they all know each other. If I get branded as a patient who doesn't follow her doctor's directions, then another cardiologist would not want to see me, I'm sure. Since I do not drive anymore, I think I will have to find a way to get to another HMO in another city. Like the others said, I'm just going to have to take the bull by the horns by researching and taking control over the care of my body. I remember one of my friends telling me to be more assertive when dealing with an HMO. I guess I need to learn that.

Hi Jackie,
I asked about your clot because while I was reading more about nattokinase and warfarin, I came upon a DVT forum. Many of the posters had clots that they were watching. What was interesting was that most of them were taking both warfarin and nattokinase (without the vitamin K) and doing fine. They were on the nattokinase and watching their clots, to see if they would dissolve. And their INR remained stable. But they were under their doctors' supervision, too. There's the rub. For me and my cardiologist, that is. I don't know. Maybe, I'll just take a plunge. I'll just tell her I'm going to take the nattokinase and see what she says.

Trying to be assertive,
May

May, why confront her at all? Find out the inter-city bus schedules, greyhound and trailways, from the yellow pages. Take a taxicab to and from the bus stations. Also research doctors or, if you feel you must, HMO's in other places via the yellow pages. Just because your doctor thinks an EP would not be interested in you does not mean that is necessarily true. Find that out for yourself by means of the telephone. EPs have telephone numbers and you, a lowly patient, can call them and ask basic questions like, "doctor, do you have a rule against accepting patients who have ectopics all the time but only have actual atrial fibrillation episodes once in a while?"

PeggyM

May, i don't think you need to confront her at all.

Transportation is the key here. Northern cities are all connected by the greyhound and trailways bus system, of which i have always found the trailways system to be slightly cheaper and about as good. I do not know how the buses are on your coast, though. You got to call them up and ask. Probly the way to get to the bus station is by taxicab, and that fare to and from the station has to be part of your calculation too. Tip the cabdriver [a dollar for every $10 of the fare amount will do nicely anywhere], you need him to carry your bags if for no other reason.

In fact, greyhound at least used to have a service where a handicapped person can call them and request help in boarding and disembarking, and some greyhound employee will make sure you and your baggage make whatever connections you need. I have seen elderly persons making use of this system,as well as those in wheelchairs, so ask about it, ok?

PeggyM

Don't know just how both the above posts got printed. i wrote the longer one and thought i had posted it, but i guess the computer gremlins must be having another festival or something, i had no sooner written out the second one and posted it when the first mysteriously reappeared.
PeggyM

May - those taking both warfarin and NK need to be supervised by a physician. As you point out, this is being done successfully. Finding a physician who is knowledgeable on the nattokinase part of it is the difficult part. Jackie

Peggy,
You are absolutely right. In fact, I've received an e-mail from a poster, bless her heart, reminding me of an HMO in another city near here. I can take the BART train there and walk the 5 or 6 blocks, which will give this gal some needed exercise. Also, they might have a shuttle from the station to the HMO. I've seen them at my HMO. Thank you so much for your wisdom. Oh, and I will use your question. Thank you for that, too.

Jackie,
I agree with you in that I have asked my cardiologist, PCP, ENT doctor, neurologist, even my ophthomologist about nattokinase. Not one knew what I was talking about. And not one was interested in knowing about it. I think that was what upset me the most.

May