New, my story and questions.

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Aussie
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New, my story and questions.

Bericht door Aussie » di sep 02, 2014 2:32 pm

Hi, Im new and Willy kindly registered me. Thank you.
I'm sorry I don't know Dutch and will have to write in English.
I'm 56, female and have cardiomyopathy and a history of ME prior to that. I was also unwell when young.
I was first given a pacemaker as an emergency 10 years age. After blacking out, I was hospitalised and went into total heart block when tested on a treadmill.
Initially I was diagnosed with Lymes Disease but later tests were negative. I was unwell for several years after that and very sensitive to any pacemaker changes.
Approximately 6 years ago I had pericardial effusion and was found to have a thin septum.
I was monitored for several months by my cardiologist and eventually treated by a Chinese Dr with acupuncture and herbs and the effusion healed. (The only option my cardiologist had was open heart surgery to drain the fluid as its location precluded keyhole surgery.)
I am not on any medication as I tend to have low blood pressure.
Five years ago, my pacemaker was changed as the battery was low. As my ejection fraction was dropping and cardiomyopathy developing, the following year my pacemaker was changed to a biventricular pacemaker and a defibrillator. Following this I had phrenic nerve stimulation until the lead was repositioned in 2012. Last year the defibrillator lead broke and I had another 2 operations to remove and replace it. Since then ( last November) I have had pulmonary embolism which is now almost resolved. I have been on blood thinners; reacted to the first medication, including increasing weight rapidly (2 sizes in 4 days) and am still slowly losing weight, and was changed to warfarin which has now stopped. I am aware I am vitamin D deficient and have taken that and CQ10 or ubiqunol.
I think my ejection fraction has now increased to about 40 (was in the 20s) . I also have a heart murmur.
I also react to wheat and dairy, and eat a low GI diet.
I would like to start the protocol. I would appreciate your advise about using the MSM. I have always avoided medications containing sulphur, as I've been told I reacted to this as a child. However I have not had any issues with foods that contain sulphur.
I hope that makes sense. Thanks for any advise.

Code: Selecteer alles

june 2014 EJF 28%

December 2014 I am doing better in the last week- my breathing has improved. I have only occasionally felt breathless or dizzy.

Aleta
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Re: New, my story and questions.

Bericht door Aleta » di sep 02, 2014 5:09 pm

it´s great that you found willy, it´s an awesome person, I hope everything goes well!!!

Willy
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Re: New, my story and questions.

Bericht door Willy » di sep 02, 2014 5:28 pm

Hello, are you diagnosed with heart failure? And if so why are they not giving you the standard medication for this condition? Like beta blocker, ACE inhibitor, diuretics?
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aussie
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Re: New, my story and questions.

Bericht door Aussie » di sep 09, 2014 10:08 am

Hi Willy,
yes, I'm aware its unusual. I have low pressure. I've have been advised the medications that are available could lower my blood pressure further, and that this makes them unsuitable for me. My cardiologist is concerned any drop in blood pressure would be detrimental.
My ejection fraction was dropping before I had the biventricular pacemaker and it then improved from 20s to 30s (I was incorrect in my last post), so I am being monitored, but not given meds. However my breathlessness is worsening and effects me day and night, and while I've had difficulty walking on inclines for a long time, I'm noticing this is also worsening. I also now am dizzy when I bend over and find lifting things is becoming more difficult.
hope that answers your question.

Willy
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Re: New, my story and questions.

Bericht door Willy » di sep 09, 2014 11:28 am

Is there a known cause for your cardiomyopathy? Lyme?

Will your cardiologist allow the use of supplements to improve your health?

Do you the blood value for pro-BNP and vitamin D?

What is exactly the name for your cardiomyopathy?

What is the doses of your Q10 per day?
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aussie
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Re: New, my story and questions.

Bericht door Aussie » ma sep 29, 2014 8:12 am

Hi Willie,

I'm sorry to take so long replying - my family and I have all been unwell.

I have idiopathic cardiomyopathy and don't have heart failure. I'm advised the biventricular pacemaker
resolved this. Though my doctors expect I may well develop heart failure and have discussed the possibility of needing a transplant in future.

I was initially diagnosed with Lyme disease 10 years ago when first hospitalised but subsequent blood tests have been negative. I recall the initial doctor saying I didn't have all the bands they look for, only some. However I am aware there are organisations here who dispute the accuracy of the testing done here and I will check this further when I'm able.

My doctors thought I had sarcoidosis although previous chest xrays were negative. I recently had a heart PET scan to check again and this was also negative.

I don't know my blood values for proBNP or vitamin D and am checking this and will post when I know.

I was taking 150mg CQ10 but recently switched to ubiquinol-10 150mg.

II hope that all makes sense.

regards Mary

Willy
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Re: New, my story and questions.

Bericht door Willy » ma sep 29, 2014 10:00 am

That is not realy an excuse for not replying.

Please provide the following information

Vitamin D blood level
pro-BNP vlood level
EJF % (pump function of your heart)
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aussie
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Re: New, my story and questions.

Bericht door Aussie » do okt 09, 2014 2:57 am

I'm sorry Willie for taking so long to reply and to repost the messages.

I am not used to forums and have been confused about how to post. I also had some unexpected family crisis, my computer died suddenly and I was ill in bed during that time. I mean that as an explanation not an excuse.
I will reply more regularly. I do really appreciate your help.

And I'm sorry that I am now late replying again. I have just seen your message as I was expecting an email. I see now I should have ticked the box to be notified and assume I must have omitted that. I will check more regularly.

I had an appointment with my general physician to get the information you requested and have been waiting for information from my cardiologist. I am advised my vitamin D level was 30 nmol/l when last checked 9 months ago. As the EJF% and proBNP was not available to him, I did ask my cardiologist's office and am still waiting a reply from them so will phone them again.
My general physican will arrange for blood tests to check the vitamin D level again and will include the proBNP if my cardiologist does not have a recent level.

I will post again when I have the information.

Aussie
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Re: New, my story and questions.

Bericht door Aussie » do okt 09, 2014 6:40 am

Hi Willie

My ejection fraction was 28% in June this year. I'm warned that this figure may not be very accurate as the method that was used to calculate it, based on echocardiograms, relies on a uniform heart contraction and my contractions are variable. My septum is thin and does not contract properly and this means my heart does not contract uniformly.

I do not had a pro-BNP blood level. The hospital does not normally do this test. I will get it tested and post when I have a result.

Willy
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Re: New, my story and questions.

Bericht door Willy » do okt 09, 2014 9:00 am

Start taking 1000 IU vitamin D3 per day and perform a blood test in januari 2015 to see if this doses should be adjusted

What kind of supplement you use and what dosis, please also provide the manufacturer

Which medicine are you using
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aussie
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Lid geworden op: za aug 30, 2014 5:52 pm

Re: New, my story and questions.

Bericht door Aussie » vr okt 10, 2014 2:40 am

Thanks Willie,

I am taking Bioceutials brand www.bioceuticals.com.au
Cholecaliferol equivalent to vitamin D3 1000IU.

Willy
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Re: New, my story and questions.

Bericht door Willy » vr okt 10, 2014 10:11 am

Oke Aussie this is the reponse speed we need on this

I am on holiday in Rome and fly back to Holland today, so no more response from me

Please find the following products and mail me the specification, so do not buy yet

Oil filled Q10 100 mg

Acetyl l carnitine 500 mg

Magnesium connected to a amino acid for instance magnesium citrate 200 mg

D-ribose powder, you will use 15 gtams per day

The supplements should not include other ingredients
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aussie
Ervaren met het forum
Berichten: 40
Lid geworden op: za aug 30, 2014 5:52 pm

Re: New, my story and questions.

Bericht door Aussie » vr okt 10, 2014 3:27 pm

HI Willie

It may take a few days to get information on all of these but will post as soon as I have any information

Willy
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Re: New, my story and questions.

Bericht door Willy » vr okt 10, 2014 10:47 pm

Oke
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aussie
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Berichten: 40
Lid geworden op: za aug 30, 2014 5:52 pm

Re: New, my story and questions.

Bericht door Aussie » di okt 14, 2014 10:38 am

Hi Willie,


Acetyl Carnitane 500mg Herbs of Gold-Acetyllevocarnitine hydrochloride (Acetyl L-carnitine) 500mg
http://www.herbsofgold.com.au/products/product/1627

D-Ribose powder- Metagenics http://www.metagenics.com.au.

The Magnesium has been difficult to find. The following were available:

-Neutralife Magnesium (as amino acid chelate) 150mg
Encapsulating aids.(http://www.nutralife.com.au)

-Herbs of Gold Magnesium (as citrate)
145.8mg. (http://www.herbsofgold.com.au/products/product/1657)

I will look elsewhere for 200mg dose.

Also I was advised that Bioceuticals CQ10 100mg only contained Ubidecarenone (coenzyme Q10) and no other ingredients, but have just checked online and see it also contains d-alpha-Tocopherol (vitamin E) equivalent to 10 IU vitamin E, so I'll look again for a product without the vitamin E. (http://www.bioceuticals.com.au/product/ ... oQ10-100mg)

I'll post again when I have some information on Q10 and Magnesium.

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