Deterioration after starting trimethoprim+zocor

[jazzmowsky]

Hi,

I found the message-boards last night and have had a road to Damascus moment I think ! I am 54, live in UK, and have been taking simvastatin for two years after a cardiologist recommended it as part of arrythmia treatment. I had elevated cholesterol with a family history of heart disease, cholesterol was 5.8 and I had tried to reduce it with diet and exercise for three months previously which hadn't worked. I have been taking sotalol for five years to try and contain PAC's and the anxiety that goes with them; this has been fairly successful albeit I live with extra beats every day. Three months ago trimethoprim was added to the mix because of silent UTI's and the thought that they were making the runs of ectopics worse. I am now, it seems, folate anaemic and the awful, awful, runs of ectopics ( every other beat and going on for an hour + ) has sent me scuttling to the GP and a re-referral to cardiologist. I am unable to understand why suddenly I am anaemic, weak, shaky and with ectopics which terrify me so much, and then I found some of the posts on here. I am awaiting blood tests next Tuesday, have taken on board the CQ10 info on here and wondered if anyone has any suggestions for me. I am so frightened, I have a disabled daughter who I look after full-time and in the middle of the night I am reluctant to summon paramedics to do a heart trace in case they cart me away. My hubby works nights, so five of the week I am alone, and now in such a high state of anxiety. I will not take a statin again or a trimethoprim because I need to know if my symptoms will settle. My pharmacist said this morning to wait for the blood results before I take Q10 or folic acid which seems reasonable but I really feel I am going to die before I can get help with this. Please help.
Julie.

[Brian C.]

[i]Duplicated post erased[/i]

[Brian C.]

Hello and welcome Julie. I wouldn't wait to start taking Coenzyme Q10 since statins cause depletion of this vital substance which can lead to heart failure. Statin pioneers Merck knew about this 20 years ago and filed patents for statin/CoQ10 formulations then shelved them and have since kept shtum.

Heart arrhythmias are sometimes associated with magnesium deficiency. Try supplementing - and eat lots of green leaves.

As you have discovered there is plenty of good information here.
You will soon know MUCH more than the average doctor about statin damage and strategies to assist recovery.

You will also gain a correct perspective on cholesterol.
A level of 5.8 is normal - and there is absolutely NO evidence that statinization is of any benefit whatsoever for women.

Brian.

[jazzmowsky]

Hello Brian,

Thank you SO much for replying. I have no idea how to take Q10 or if it will interact with sotalol or even create more arrythmia. I can't believe how quickly I have become unwell, and I can only track it back to the start of trimethoprim. I understand that we have about four months of reserves of folate, I suspect I have used mine in three !! Eating hot food or large quantities creates ectopics, so I have developed a fear about eating and I know that I don't eat enough. Today I am turning over a new leaf. If you have any advice about the Q10 I would be very grateful to know, our pharmacist admitted he had no idea at all and the only other 'experts' want you to buy it from them! Do you know about dosage and interactions ? Kind regards. Julie.

[Brian C.]

Julie, coenzyme Q10 (CoQ10)is an essential substance for the functioning of the mitochondria in every cell in our body. These mitochondria (mitos) are bacteria-like structures that produce the ATP (adenosine triphosphate) that energizes the cells. No ATP, no life. It's as simple as that.

By reducing (down-regulating) our body's ability to produce CoQ10 and other vital substances HMG-CoA reductase inhibitors (statins) poison mitos, which leads to cell death (apoptosis). This is particularly serious for the hardest working muscle in our body - the heart. Heart failure is the consequence and is one of the reasons why statin therapy does not extend life (i.e. no improvement in the absolute risk of death).

I take 900mg of CoQ10 in gelcaps every day along with several grams of l-carnitine to address problems caused by mito damage caused by 17 years of statin poisoning. I have also been taking d-ribose, the form of sugar most immediately available for use by the mitochondria.

Merck, the company that first marketed a statin (Mevacor) also developed the process by which CoQ10 could be produced on an industrial scale. They sold this process to a Japanese company (Kaneka).
I only buy CoQ10 made by Kaneka and I import Healthy Origins gelcaps from iHerb.com in the US.

For some "mysterious" (i.e. political) reason Coenzyme Q10 is not listed in the British Formulary, hence the prevailing ignorance among doctors and pharmacists.

It is a natural substance essential to life and your body NEEDS it.

Brian.

[Brian C.]

BTW regarding eating. My philosophy is "stay close to Nature".

I.e. :

Avoid eating anything made in a factory or that is a product of factory farming.

Minimize the consumption of starches and sugars - a low carb approach.

Minimize the consumption of grains and grain products.

Natural, unprocessed oils and fats are essential, especially fish oils.

Buy organic meat and vegetables (preferably grown by a member of the Soil Association).

Eat nuts, berries and green leaves in abundance.

Learn to appreciate strong dark chocolate (85%)

Yum :)

Brian.

[jazzmowsky]

Hi Brian,


I like the strong dark chocolate bit very much. Thank you for taking the time to reply. I noticed the time of the post, I thought I was the only one in the world around in the middle of the night ! My daughter has oxygen while she sleeps so I am a lonely figure at 4am. Have a good Sunday, I am going to get some Q10 today and then order as you have suggested.

Kind regards. Julie.

[Brian C.]

Hmm, the times are 2 hours behind GMT so I wasn't up THAT early

Brian.

[Allen1]

Hi there Julie,

and welcome to the forum. Brian is spot on and especially with his advice and his choice of Q10 ie :- "I only buy CoQ10 made by Kaneka and I import Healthy Origins gelcaps from iHerb.com in the US."

Until you manage to get a supply from them I have found that ASDA do a 30mg X 30 capsules for £2.98 or on offer 2 for £4.00 (here in Blyth on the vitamin isle). These are the powder form capsules and should be taken with some form of fatty food, I take them with an omega 3 capsule or cod liver oil then a slice of toast etc to stop the fish taste reappearing.

My dosage is 2 of them twice a day but other people require much more to get the benefit, I should also probably take more but manage with this for now. The ASDA Q10 capsules also contain Soya etc so read the label to check the contents, I have bought virtually the exact same thing at very much inflated prices from various chemists and health shops before finding these (You really don't always get what you pay for with some sources here in the UK).

Also remember the £18 limit for importing from America, it works out cheaper to order and pay shipping several times a year rather than getting stung by customs and then having to pay Parcel Force a fee to collect the item for you.

All the best,

Allen

[Brian C.]

I think it highly likely that the soya is a GM variety Allen if it has been sourced from the US.

150 x 100mg Healthy Origin softgels from iHerb come in below the £18 limit.
Good value even with shipping. No source in the UK comes near for quality & value in my experience - and a big thank you to Ray Holder here for discovering that source for us.

Brian.

[Allen1]

I believe that you are right on both points Brian, although it doesn't say GM, it does say modified Maize starch for the capsule shell :-

Ingredients:
Soya Bean Oil
Capsule shell modified Maize starch
Glycerol
Carageenan
Disodium Phosphate
Colour (iron oxides) (the red shell)
Vegetable Fat (Sunflower Lecithin)
Beeswax
Co enzyme Q10
Soya Lecithin

Just one named modified ingredient but as you know nothing is set in stone when it comes to where an ingredient is source from.

Other available Q10 capsules Ingredients are generally:-
White Rice Powder
Cellulose (capsule shell)
Silica
Co enzyme Q10

I wholeheartedly agree that your option is the best one, but as a temporary measure to get things started till an order arrived (2 to 4 weeks from ordering), the Asda Q10 has been just as effective as any other brand that I have tried here in the UK and costs a lot less than the others of the same quality with their inflated prices.

When I mentioned the £18 limit, it was only to point out that there is a downside to buying in bulk and thinking WOW what a bargain, and then you get the surprise when the postman knocks

All the best,

Allen

[jazzmowsky]

Hi Allen,


Thank you so much for that , amusingly enough my hubby Jon works for them and he says he will get some for me tomorrow and then I will order what you and Brian are suggesting. I have recently been hit with customs after buying some quite low priced jewellery from america, it was a surprise ! Thank you for the advice about the toast and I will also acquire some fish oil capsules aswell. Because I have ectopics all the time I am wary about taking anything that may upset my heart rhythm; I used to take a great interest in supplementation until I had some liver damage a few years ago after an arthrogram, it turned out to be the diclofenac I had used whilst waiting for the treatment, but GP suggested I stop all vitamins and minerals and go dairy free for a few months. I did that, but to be honest with you I find the whole thing very confusing. Because both my parents have high cholesterol and heart disease I thought it was the best thing to start zocor, especially as the advocate was my cardiologist ! I have SVT and take sotalol, but recently the episodes have been more than I can bear, especially after starting prophylactic trimethoprim. I had a premature delivery 20 years ago with my daughter and had 54 units of blood given during and post-delivery, a cardiac arrest and arrythmia ever since. When it becomes unbearable I have to go and talk to the GP, which is what happened this week. Apart from the original 5.8 cholesterol reading ( I can't remember the fat ratio's ) I am healthy and slim and could eat better !!! Something I am trying to address after reading the posts here. I feel alot of comfort finding these posts, so I have to thank you, and Brian, for taking the time to reply to me. If you don't mind my asking, what happened to you taking zocor? Kind wishes. Julie.

[Brian C.]

My GP put me on Zocor as soon as it became available and I was on it for 7 years before he switched me onto Lipitor (80mg) in a misguided attempt to drive my cholesterol down as low as possible. In retrospect I was suffering effects (muscle aches, cramps, fatigue, loss of mental focus) for years but he always ascribed them to ageing or my condition (atherosclerosis). Only after discovering this site did I learn the truth. Since then I have been giving him tutorials and emailing him references to pertinent studies.

One such study revealed that, of the types of statin investigated (did not include atorvastatin - Lipitor), simvastatin (Zocor) showed the greatest incidence of mitochondrial genetic (DNA) damage. This dreadful stuff can be obtained without prescription here in the UK!

I am afraid what we have here and in the US is to a large extent marketing-based medicine rather than science-based as it is (mis-)represented. Regretfully we are victims of nothing less than criminal conspiracy to make money out of suffering and the creation of new illnesses "needing" lifetime medication.

You describe yourself as healthy and slim so don't allow yourself to be treated as a sick person. From what I have gleaned such cardiac problems you described are usually the result of adrenal malfunction brought on by trauma and chronic stress. I believe that's the origin of my own and my late mother's conditions.

I assume you avoid caffeine like the plague Julia?

Brian.

Brian.

[jazzmowsky]

I do Brian, and alcohol, nicotine, sugars, hot food and large meals, tea, chocolate and everything that is enjoyably naughty ! I have periods of relatively free and easy heart-beats, then patches of awful times and usually when I am brewing for something or as you quite rightly said, stressed. The result of my ante-partum haemorhage is my beautiful daughter Nikki who is 21 soon and globally disabled with cerebral palsy. I look after her full-time after many years as a police officer and to everyone else who looks at my life ( horrified ) I have a complex and difficult time with her. This is probably true, but to me she is gorgeous and I fall in love with her again every single day. I did nurse training in the 90's to enable me to cope with the procedures needed to keep her at home, and we nurse her through all sorts that would probably daunt alot of folk. But anything to stay out of hospital, as I am sure you would agree !!! I have tried to be informed, I even feel a paracetamol, but I didn't realise about the folate thing until reading up on it after my visit to the GP last week. Because my diet isn't good, I think my reserves are long gone, so for three days ( and onwards ) we have made concerted efforts and I will NEVER take a statin again, never. Or trimethoprim !!!

Regards. Julie.

[Brian C.]

Good on you Julia!

One of the tenets of Hippocrates is "Let thy food be thy medicine". Way to go.

Regarding beverages, I start with red (ruibos), followed by green and finishing with camomile as the day goes on. I have become over-sensitive to caffeine. Doesn't take much to set off the palpitations and if I push myself, even a little bit, I sometimes get arrhythmia to - but usually the angina is sufficient early warning to back-off. Anything that raises my pulse really.

It's an unpleasant feeling isn't it


Brian.

[jazzmowsky]

It is, and I have never got used to it even after 20 plus years. I have had some very bizarre coping mechanisms - I have been through the Claire Weekes floating and accepting ( drove me to distraction ) to all the different breathing techniques you can imagine ! I tried even to make them old friends, and to sit down and say ' go on then, you can have me ' fully expecting the horseman of the apocalypse to sweep through and whoosh me away. Essentially, I am still terrified, fortunately the last episode coincided with my husband's night off and he sat with me 'til 4am, he was snoring but his sheer presence made me feel nothing too awful was going to happen. The cardio bods have tried to treat me down the years, I resist medication but with the SVT I had to accept the sotalol finally when menopause hit a couple of years ago. I have been offered ablation which I don't trust and the latest offering is a Reveal device so they can do a diagnostic on my arrythmia which is so elusive when someone wants to look at it, and a menace when I am on my own !! I am cheered by the pronouncement of a structurally sound heart, and my doctor saying I could go on for days without too much damage ( I only did an hour the other day and I couldn't get my breath, jelly legs, the full monty ) so I don't know who he is trying to kid ! How do you cope with all of this Brian ? I can detect your humour, but it's no joke is it ?

[Brian C.]

Fortunately it is fairly uncommon these days though the angina seems more easily triggered, which is likely an arterial spasm thing. I do now make sure I get plenty of magnesium. All one can do is sit or lay very still and try to concentrate on correct breathing. I am sure any of the Eastern disciplines help. Which reminds me to get back to practicing Zhan Zhong

When I first ran into trouble 22 years ago the cardiologist put me on a beta-blocker. Couldn't stand the stuff so the tablets ended up down the toilet.
Been coping without tranquilizers since.

Trigger for all this was our first child being born with liver disease (cirrhosis due to biliary atresia) and the concomitant stress. Until then I was fit as a fiddle, having just one-off day a year successfully fighting off the 'flu that everybody else was succumbing to. I believe this was due to my higher than average cholesterol level, which is now recognized as advantageous in fighting off infections.

Brian.

[Allen1]

Hi there Julie,

I bought some second hand Minicraft tools from America (ebay) about 6 or 7 years ago and had to pay £28 charges inc the parcel force fee, that was a nasty suprise for me (very nieve at the time).

Most people will be able to appreciate to a degree the sensations you are experiancing in the form of palpitations which can happen to healthy folk now and then and although they are very mild in comparrison to what you are going through it can still be very frightening at the time.

It was after an MI that my arrythmia problems really started and looking back they just got worse when I was on Zocor. I was on Zocor/(generic)Simvastatin for at least 10 years and possibly up to 12, I cannot remember when I started them as there were lots of tablets and changes going on back then and my memory got messed up over the years. Anyway its about 22 months since I stopped the statins and although I've had some bad episodes since stopping, they are now not as strong or noticable as they were a couple of months back so maybe there is hope for you too.

All the beat,

Allen


Here is the link to my first post it may explain things a little clearer (remove the"*"):-
*http://www.spacedoc.net/board/viewtopic.php?p=5434&highlight=#5434

[Allen1]

Brian and Julie,

I know that when I have problems breathing or when my heart goes crazy while in bed at night that taking your mind off what is happening to you will often help to dissipate the problem, I switch the radio on and listen to a phone in show and that helps to calm me down and distracts me from the sensations that are by now settling down. This may sound a daft idea but the more you think or worry about the sensations the worse they get, by relaxing and taking your mind off the problem as in listening to a radio conversation, the better you will feel.

It does work and you have absolutely nothing to lose by trying it.

All the best,

Allen :)

[jazzmowsky]

Morning Allen,


Yes, I try reading and watching something inane on the TV and that usually fixes things. I am around alot at night with Nikki my daughter, she has sleep apnoea and needs checking through the night, and having always been an insomniac it isn't too much trouble to support her through those darker hours. I suppose over the years I have grown to dislike night-time. My ectopics bother me then, it's tiredness mostly I know, and Nikki has had status seizures in her sleep and that has terrified me. When I was a child I had a fear of night-time and always had a light on outside the bedroom door. All the factors are perfect to create runs of PAC's, although I am told there is some ventricular extra-activity aswell. Also, I don't know about you, telling someone about it is comforting, talking here has comforted me alot over the past couple of days, and receiving your posts has too. When I saw that many of them were dated back to 2006 I thought perhaps no-one was actively participating now. I used to read american heart boards, but they seemed to bear no relationship to me and the individuals there were very clicky and suspicious of new members. I read only, didn't post, and found out alot about what was happening to me. And to Brian, I will read some of your previous posts for the background. Thank you both ever so much for replying; today is my Q10 start date, so I will be interested over the next weeks to note hopeful improvements, albeit initially subtle. I have stopped statins for two nights now and the only difference is I feel less light-headed first thing in the morning, but that is probably just 'in the mind ' !!!! Too early yet to know. Have a good day, and kind regards.

Julie.