treatment kiirsten

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
kiirsten
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treatment kiirsten

Berichtdoor kiirsten » Wo Sep 26, 2007 9:49 pm

Hi Corrij,

Thank you so much for replying so quickly!! It seems so rare these days so I truly appreciate it! I wasn't sure if you wanted me to write about my condition in the initial e-mail or on the forum, so I'll go ahead and give you my info:

My name is Kiirsten, by the way. I am 24 years old and was diagnosed with cardiomyopathy in August 2004. I actually went to the cardiologist yesterday and after talking with my boyfriend (who has been an amazing advocate for me since the diagnosis), I am no longer willing to accept the standard solution of Western medicine...I've seen 5 cardiologists now and it's always the same..."you'll probably be on meds the rest of your life." I'm young, otherwise healthy, and plan on living a medicine-free life as soon as I possibly can. The stories I've read have been so inspirational and I know if it's worked for others, it will work for me, too.

So in 2004 my EF was around 25%. My boyfriend was actually the one who noticed my symptoms of shortness of breath and arrythmia and made me go to the doctor, who referred me to cardio, where this all started. I've always been very active and never thought twice about the possibility of heart problems. We do not know what caused it, but suspect perhaps a virus at some point in my life. I have been extremely diligent about my meds (Coreg 6.25 mg 2x's and Lisinopril 10 mg 1x) this whole time, and actually my numbers have improved significantly. Last year I asked my dr. if I could try cutting the doses down by 1/2, but the following echo showed that my EF had decreased (to 42%, down from 50-something), so she put me back on the full dose. The biggest side effect for me is dizziness, when I get up after lying down or sitting for awhile...it happens many times during the day, and I know it's b/c of the meds. My BP yesterday was 94/54 and my pulse is always really low. I don't have any leg/ankle swelling. I still have some arrythmia. As of my last check-up in March, I was at my all-time high of EF 65%, and I will be making an appnt. for an echo this week so I know where I currently stand. I was thinking that after I find out my results, it would be an ideal time to try the protocol, as I'll have a baseline/constant to go off from. Then, when I get my next echo 6 months from now, I should hopefully be able to see if the supplements made a difference. The thing is, though, if my numbers are already high (like my past 65%), they really can't get much higher...and that's fine with me, but my main objective is having a "normal" heart without medication!! So perhaps I should rather wean off my medication (with doctor's approval, of course!) to see the effect of the supplements?? It gets kinda tricky when you're trying to determine if it's the medication or the supplements that are working, you know? Also, my doc wasn't too keen when I brought of the word "naturopathic" yesterday, so hopefully she'll give me the green light...we'll see.

So I know that I need to consult my cardiologist before going forward with the plan, but the only issue I have at this point, in all honesty, is money...there were a lot of supplements on the protocol, and I wanted to see what you thought the "most important ones" are, if you're a "starving student," like myself, who cannot afford everything. I know the classic heart supps. are the Q10 and L-carnitine (and perhaps taurine)...since my case does not seem to be as severe as some of the others, do you think that by just taking these, I can eventually get to the point of "ex-cardio patient"??



Sincerely,
Kiirsten :o)

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Wo Sep 26, 2007 10:01 pm

Hello Kiirsten,

Thank you for telling me your story.

I know that some of the supplements are very expensive, and this is sometimes very frustrated for me.
We can put out some of the supplements of the protocol because youre EF is not that low, so you can save some money.

iff you have any questions please don`t hesitate to ask,

greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

kiirsten
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Berichtdoor kiirsten » Do Sep 27, 2007 10:09 pm

I go in tomorrow for my echocardiogram so will update you with the results hopefully sometime next week. Once I see my numbers and talk with my doctor hopefully we can figure out the best way to attack this thing! Thanks so much for all your help, Corrij!!

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Berichtdoor Corrij (therapeut) » Vr Sep 28, 2007 11:06 am

Hi Diane,

First at all a very warm welcome on this forum :D

I have a little tip for you, if you have arrythmia`s then there is a special test you can do to see if you have a shortage of potassium, this is often a cause of the problem.
You can see if this is the case with you by eating 4 or 5 ripe bananas a day. If you have cardiac arrhythmia and it gets less by eating the bananas then we can always proceed to taking potassium tablets.

About your dizziness it is possible that your betablocker is causing this, your bloodpressure is to low.

Maybe the amount of Coreg is to high.
Coreg can cause side effects that may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be awake and alert. Avoid drinking alcohol within 2 hours before or after taking extended-release carvedilol (Coreg CR). Also avoid taking medicines or other products that might contain alcohol. Alcohol may cause the carvedilol in Coreg CR to be released too quickly into the body. Check the labels of any prescription or over-the-counter medicines you take to see if they contain alcohol (also called ethanol).
Coreg side effects
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have any of these serious side effects:
slow or uneven heartbeats;

feeling light-headed, fainting;

feeling short of breath, even with mild exertion;

swelling of your ankles or feet;

nausea, stomach pain, low fever, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes);

depression; or

cold feeling in your hands and feet.

Other less serious side effects are more likely to occur, such as:

decreased sex drive, impotence, or difficulty having an orgasm;

sleep problems (insomnia);

tired feeling; or

anxiety, nervousness.

Side effects other than those listed here may also occur. Talk to your doctor about any side effect that seems unusual or that is especially bothersome.

HYPERTENSION MEDICATIONS

There are a number of medications that are used in treating
hypertension. Beta-blockers and ACE inhibitors are just two types of
these medications. Here is some general information about them.

“[Beta blockers] work by blocking the effects of certain chemicals in
your body. With some of these drugs, your heart may beat more slowly
and less forcefully. With others, your blood vessels may dilate and
you may feel faint when you stand up. These actions on your heart and
blood vessels lower your blood pressure. . . .

Beta-blockers have been proven to reduce the risks associated with
hypertension, including heart attacks and strokes. They have been used
for many years, their side effects are well known, and they are
generally less expensive than some other blood pressure medications.
All antihypertensive classes reduce CVS [cardiovascular system] events
with perhaps the exception of alpha blockers. . . .

Angiotensin converting enzyme (ACE) inhibitors (lisnopril)dilate your blood
vessels by blocking the formation of the natural body chemical
angiotensin II, which constricts blood vessels. However, up to 20% of
people who take ACE inhibitors . . . develop a dry, hacking cough.
This annoying side effect typically occurs in the 10 to 24 weeks after
starting the drug. The cause is unknown. Switching to another type of
ACE inhibitor may decrease or stop your cough. There are also similar
anti-hypertensive medications that may not produce a cough. Don't stop
taking a medication without first seeing your doctor. These drugs may
be particularly effective in patients with diabetes and renal
disease.”

greetings,
Corrij
Those who do not have enough time for good health,

will not have good health for enough time.

kiirsten
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Lid geworden op: Ma Sep 24, 2007 9:42 am

Berichtdoor kiirsten » Di Okt 02, 2007 10:54 pm

Thanks so much for the reply and all the helpful blood pressure info! A quick edit on my last posting, about my EF...my last EF (in March) from the echocardiogram was 42%, and the one before that (6 months prior) was the 65%, my all-time high. So basically my EF decreased 23% during those 6 months when I decreased my medication (Coreg and Lisinopril) by half (with doctor's permission). Well, I got my echo results from last Friday and I'm back up to 60%! My doctor called me and said "good news, you have a normal heart!" She said that if I have 3 "normal" echo results in a row (so, by the end of one year, as I get an echo every 6 months), she will start getting me off my meds! YAY!!! It was so encouraging to hear that even my "Westernized" cardiologist had hope of me getting off of them!

So this is where I'm at now: I'm thinking that in order to prevent my heart from decreasing again once I finally get off the meds, now is my time to do the preventative work, w/ the supplements--build up my heart strength. I just bought a bottle of L-Carnitine (500mg) and CoQ10 (200mg) today at my local health store. Since my EF is normal, what do you think about just taking these two (along w/ my meds) for the next year? Do you think it has the capability to build up my heart so it's strong enough to function on its own after a year? If so what doses do you recommend me taking? It's expensive stuff and I'm on a very tight budget, so of course I'd like to make it last, but I also know, as my boyfriend pointed out, that when it comes to your health, you've gotta do whatever it takes. Look forward to hearing what you have to say!!

P.S. I had my potassium levels checked at my appointment and they were fine...the echo technician said he didn't detect any arrythmia.

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Berichtdoor Corrij (therapeut) » Wo Okt 03, 2007 11:08 am

Hello Kiirsten,

CONGRATULATIONS :D :D

This is very good news :P You must be very happy.
Yes you must take the supplements along with your meds.

Take the carnitine always on a empty stomach!

Start taking 3 x 500 mg carnitine a day

and 1 Q10 200 mg a day.Try to buy the next time a Q10 of 100 mg.

We will be added some other supplements in a few weeks time, and then we change the amount of the carnitine and the Q10 also.

You don`t have to take the amounts of the protocol because your EF is 60% :wink:

greetings,
Corrij
Those who do not have enough time for good health,

will not have good health for enough time.

kiirsten
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Lid geworden op: Ma Sep 24, 2007 9:42 am

Berichtdoor kiirsten » Wo Okt 03, 2007 11:27 pm

Thank you so much, Corrij! I haven't opened my bottle of 200 mg Q10 yet...should I return it and get the 100 mg? (why is the lower dosage better?) I wasn't sure what to buy at the time so I just bought the highest doses of everything.

For the carnitine, should I take 1 pill at 3 separate times during the day or take all 3 at once?

Lastly, you mentioned that in a few weeks we'll be changing the amount of carnitine and Q10. Do you mean changing the potency or the number of pills I'll have to take? Also, what other supplements will you be recommending at that point? I'd like to buy them all now b/c our store is having a great 25% off all supplements sale.

Thanks so much for the encouragement and for getting excited with me!! Talk to you soon! :P

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Berichtdoor Corrij (therapeut) » Do Okt 04, 2007 10:04 am

Hi Kiirsten,

If you can I would return the bootle of Q10 in the amount of 100 mg, it will save some money :D

At this moment youre heart is in a good condition, so we don`t have to follow the whole protocol, we reduce the amounts.

To have a great start I advice to take a few weeks 2 x 100 mg Q10 a day and 3 x 500 mg carnitine.

You can take the carnitine at once or at 3 seperate times, for now I suggest at 3 seperate times, and when we added some more supplements
you can take it at once, otherwise you are taking supplements all day :wink:

The other supplements are,
Vitamin C (high dosage 1000 mg)
Multivitamin
Taurine
Vitamin E (400IE)

greetings,
Corrij
Those who do not have enough time for good health,

will not have good health for enough time.

kiirsten
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Lid geworden op: Ma Sep 24, 2007 9:42 am

Berichtdoor kiirsten » Do Okt 04, 2007 10:10 pm

Hi again,

Sorry for all the questions...I just want to be totally clear on everything. So once I begin the rest of the supplements in a few weeks, will I still be on the same doses of Q10 and carnitine (2 x 100 Q10 and 3 x 500 carnitine), or will these be cut back at all?

How many mg of taurine should I start taking (in a few weeks)?

How long do you think I'll be on the supplements for? Or, are they something that people generally take throughout their life for general health and prevention? I just wonder if I'll ever get to a point where my heart can function and thrive on its own, without meds OR supplements...just curious as to your thoughts on this.

Thanks again!!!

Kiirsten :D

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Berichtdoor Corrij (therapeut) » Vr Okt 05, 2007 10:14 am

Hi Kiirsten,

You really don`t have to excuse when you have a question please ask,
that`s wy I am here :D

We will reduce the amount of Q10 in a few weeks, the carnitine stays the same because its difficult for the body to absorb carnitine.

The amount of taurine is 3x500mg a day. also on a empty stomach, but don`t start taking the taurine yet.
Let your body get used to the supplements.

The people who are doing very great and don`t have any symptons at all taking supplements throughout their live for prevention, because they never will go back feeling sick and tired again.Not as much as the protocol but in a different amount.

Yes I really do believe that your heart comes to a point that it can function and thrive on its own.
Willy himself and also my own husband have proven that(and their are more story`s)

I even adviced a young women who have a dog with cardiomyopathy, animals can`t fake anything and this dog is doing great, he is running trough the woods and he is having a lot of fun :D

Another example,

http://www.candida-fibromyalgie-hypogly ... php?t=8611

greetings,
Corrij
Those who do not have enough time for good health,

will not have good health for enough time.

kiirsten
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Lid geworden op: Ma Sep 24, 2007 9:42 am

Berichtdoor kiirsten » Za Okt 13, 2007 5:59 am

Hi! Just had an update for you...as I have had dizziness/lightheadedness from my meds (Coreg and Lisinopril) for a while now, my doc told me to take my blood pressure for a week or so at home and when I told her my numbers (averaged high 70's over high 40's), she completely took me off the Coreg!! So I'm down to just Lisinopril 10mg now! I was actually a little weary about going completely off, as I've tried cutting my meds in 1/2 before and my EF decreased quite a bit. But now that I've started taking my supplements (L-carnitine and CoQ10, as of Tuesday), I feel much more confident that my heart will rebuild itself and once I go back for my next echo in 6 months, my EF will be higher than ever (it's 60% now, which is already really good!).

I just wanted to thank you for helping people like me to find another solution to all these Western meds that often end up doing more harm to your body in the long run. Since discovering this forum I have been so interested in researching natural alternatives for cardiomyopathy and I truly believe in these supplements (NO MATTER WHAT DOCTORS SAY!!!). I can't wait to get the numbers to prove it in another 6 months!! :lol:

P.S.
I went ahead and bought the other supplements you suggested (taurine, vit. C and E)...should I start those 3 weeks from the date I started my 1st supplements? Also, I bought the 100mg CoQ10, so should I switch over to that dose in 3 weeks, as well (rather than the 200mg)? THANKS!!!

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Berichtdoor Corrij (therapeut) » Zo Okt 14, 2007 1:10 pm

Hello Kiirsten,

That is good news :D youre bloodpressure was too low, hope your feeling better now.

You can start taking,

Vitamine C 3x1000 mg a day
Vitamin E 1 x 400 IE a day
Taurine 3 x 500 mg a day.

You must take the taurine on a empty stomach and not together with the carnitine,

For instance the carnitine half an hour before breakfast or two hours after breakfast

The taurine half an hour before lunch or diner. or two hours after
This is to get an as big as possible effect.

If you still have any questions don’t hesitate to ask,

And Kiirsten thank you for your kind words :D I am very glad I can help a little bit,

greetings,
Corrij
Those who do not have enough time for good health,

will not have good health for enough time.

kiirsten
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Berichtdoor kiirsten » Do Nov 08, 2007 10:04 pm

Long time no talk! It's just Kiirsten again, checking in with the latest :wink:
So I've been taking only the L-Carnitine and Co-Q10 200 mg this past month, and am now moving to the Q10 100 mg dosage. I'm now going to add in the rest of the supplements you recommended, but just wanted to get your approval if this "daily supplement schedule" is ok (with the doses you told me about last month):

-before breakfast (on empty stomach): L-Carnitine 3x500 mg
-with breakfast: Vit. C 1x1000 mg
-before lunch (on empty stomach): Taurine 3x500 mg
-with lunch: heart medication (Lisinopril 1x10mg)
Omega 3 supplement 1x1200 mg
Co-Q10 1x100 mg
1 multivitamin
Vit. C 1x1000 mg
Vit. E 1x400 IU
-with dinner: Vit. C 1x1000 mg

Would you change anything about the way I spaced things out? Since Vit. C is water-soluble I thought it may be more beneficial to spread it out throughout the day to get the maximum effect. Also, could it at all be harmful to take so much Vit C each day?

Next, since I'm taking a multi-vitamin at lunch, it is still ok to take the Vit. E at that time, as the multi already has 30 IU of Vit. E in it?

Lastly, when it comes time to stock up on supplements again, how important is it that the brands are the same as what I've been taking so far? I mean, if they have a different brand of L-Carnitine on sale than what I bought last time, is it going to have any bad effects or ruin what I've built up to this far?

Sorry for so many questions!! I just want to make sure I'm doing everything right for my heart, especially as I am no longer taking the Coreg and want to make sure I'm supplementing correctly. Thank you so very much for your time and help and hope to hear from you soon!!

-Kiirsten :D

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Berichtdoor Corrij (therapeut) » Do Nov 08, 2007 10:53 pm

Hi Kiirsten,

Vitamins are divided into two classes based on their solubility. The the fat-soluble vitamins include vitamin D, vitamin E, vitamin A, and vitamin K. The water-soluble vitamins are folate (folic acid), vitamin B12, biotin, vitamin B6, niacin, thiamin, riboflavin, pantothenic acid, and vitamin C (ascorbic acid). Fat-soluble vitamins contain only carbon, hydrogen, and oxygen while water-soluble vitamins contain these three elements plus nitrogen and some-times sulfur. Fat-soluble vitamins can be stored in appreciable amounts in the body and the water-soluble vitamins cannot be stored in the body.
It is safe to take the amount of 3000 mg a day :D
(I take much more :D )

Yes,its oke to take the Vitamin E, the amount in the multi is very low, I recommend sometimes a dosage Vitamin E of 2 x 400IE.

It doens`t matter what kind of brand you buy, as long as it is orthomolecular.The big names are the best.

The omega 3 you take is this 3 times a day?Or all at once?

The best way to take supplements is with your meals accept the amino-acids.

greetings,
Corrij
Those who do not have enough time for good health,

will not have good health for enough time.

kiirsten
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Lid geworden op: Ma Sep 24, 2007 9:42 am

Berichtdoor kiirsten » Vr Nov 09, 2007 12:16 am

Thanks for your quick reply! I take the Omega-3 all at once, with lunch. It's one 1200 mg capsule. Is that ok?


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