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Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Geplaatst: vr nov 10, 2006 1:17 am
door Sharon Lekky
Hi Folks

Just updating you on how things are going for me.

I had an echo last week, it had been 6 months since last echo and 12 months since diagnosis.

My EF is the same at about 25. Since last echo, the size of my left ventricle is the same when relaxed (I think about 75mm) but slightly smaller when contracting.

I was pretty disappointed as medical opinion is that most improvement is seen in the first 6 months of medication, with only a 10% possibility of improvement after that. I know you advise that the protocol can take about 2 years but I assume one would see gradual improvement in that time? My EF has remained the same so far.

There was something small to be excited about. My left atrium has decreased in size (it had been slightly enlarged due to back pressure from LV) and also the valves between it and the left ventricle seem to be working a bit better. The valvular regurgitation has been downgraded from a level 2/3 to level 1/2.

So that is indeed good news. I still have a tiny hope that my LV may improve a bit yet, that maybe the less damaged parts of my heart are recovering first, but I really don't know if this is how it works.

Generally, I'm feeling OK. I don't feel as though my symptoms have worsened. I do battle fatigue but again, I'm sure I'd feel tired without CHF as most mothers of preschool children do.

By the way, I researched the two forms of alpha lipoic acid and from what I can tell, S-alpha lipoic acid (S-ALA) is the synthetic form and R-alpha lipoic acid (R-ALA) is the natural form. Most preparations available in Australia are a combination of the two forms, about 50:50 , but you can buy 100% S-ALA or R-ALA. Apparently the R-ALA is about twice as effective as the S form as it is better absorbed. It is also more expensive. Sorry I don't have weblinks for this as I researched a while ago. If you need them I can find them.

I have switched to 200mg of R-ALA, but wonder if you think that's too much and I could halve the daily dose.

I hope all is well with you folks. Look forward to hearing from you soon,
Sharon xx

Geplaatst: ma nov 13, 2006 6:51 pm
door Corrij (therapeut)
Hello Sharon,

Glad to hear from you, here everything is fine. Thanks for asking.
I understand that you hoped your EF would go up, but you haven't been following the protocol that long have you?
There is definitely progress. It doesn't happen as quick as you'd like to but at least it's progress.
I think your doing well. I agree that having young children is very energy draining, it can be very exhausting and tiring. If you combine this with your physical condition it's hardly a miracle that you feel tired.

The dose alpha lipon is ok, I don't think it's too much. I would like it if you can give me the link of that site you're talking about, but there's no rush because I'm very busy at the moment myself. I'll have a look around as well.

Regards,
Corrij

Geplaatst: di feb 20, 2007 6:13 pm
door Corrij (therapeut)
Hello Sharon,

Can you please give me a update?
How are you doing?

regards,
Corrij

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Geplaatst: za feb 24, 2007 4:30 am
door Sharon Lekky
Hi Corrij

I'm well thanks for asking!

I feel as though I'm cruising at a decent level now. Have enough energy to get what I need done and symptoms are minimal. I still grab an afternoon rest when I can but my energy has kept up with demands of moving house and cleaning, restoring our old one. I did stop going to gym over the last few weeks as I felt that I want to use my energy wisely and not overdo it. Will start back as soon as we're all settled.

If I can stay like this for a long time I'll be really grateful.

Thank you so much, I'm convinced that much of this is due to the protocol.

Trust things are well with you, Willie and Marion.
Best to all
Sharon xx

Geplaatst: zo nov 18, 2007 8:24 pm
door Corrij (therapeut)
Hello Sharon,

Youre so quit? :(
Is everything oke with you?

Can you give us a little up-date?

regards,
Corrij

Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Geplaatst: ma feb 11, 2008 2:51 am
door Sharon Lekky
Hi Corrij, Willie

Just a quick message to let you know that I am going well.

I haven't had an echo for a while, the last in June 07 showed a slight improvement in EF (29 up from 20-25).

However, I feel my symptoms continue to be manageable. I've been lazy and not been exercising regularly since November but am starting again now that weather is cooling. I know my fitness has decreased but I continue to have enough energy for my day. So I should start to feel even better once my exercise kicks in.

I notice I can tolerate the occasional glass of wine which is something I just couldn't do before. I can get through a busy active day without crashing mid afternoon and can even stay up past 9pm! Whoa steady on!

I have reduced my QCO10 to 2x50mg per day and have stopped taking my amino acids. In November, I just ran out of these and went on holidays and then got out of the discipline of taking three times a day on empty stomach. I seem to feel OK without them.

?Do you think I should resume these?
?Also is it safe to take MSM for more than a year or so?

I do notice I have more CHF symptoms on hotter, humid days, mostly dizziness.

Anyway, that's my update, I trust things are going well for you all.

Best regards
Sharon

Geplaatst: ma feb 11, 2008 4:55 pm
door Corrij (therapeut)
Hi Sharon,

I am very glad to hear from you, and your doing fine :D

Exercising is very important so please try to make some time for it :D

About the Q10 and the amino acids, yes you must resume them again, they are the most important of the whole protocol.If you don`t your EF is getting worse.

Strengthening the Heart Muscle: The Power of CoQ10
Studies have shown that nutrients and supplements can strengthen the heart muscle, with fewer side effects than the powerful pharmaceuticals often used to treat the condition. CoQ10 is one of the most powerful.

The goal with nutrients and supplements is the same as with conventional medication: to slow the gradual enlargement and weakening of the heart. This process, which occurs in all forms of CHF, is called cardiac remodeling. During cardiac remodeling, the heart gradually changes shape, becoming larger and thinner. Cardiac remodeling is the driving force behind the reduced quality of life experienced by patients with CHF (Fedak PW et al 2005; Weisberg AD et al 2005).

By reinforcing the heart's function, it may be possible to slow cardiac remodeling. In this regard, CoQ10 has been studied since the middle 1960s. Present in high quantities throughout the heart muscle, CoQ10 has many beneficial effects, including energy production (Awata N et al 1980; Crane FL et al 1997; Nakamura Y et al 1982; Nayler WG 1980), an antioxidant effect (Frei B et al 1990), and stabilizing the heart membrane (Ondarroa M et al 1986).

The following studies have examined CoQ10 in CHF and found that it can improve heart function:

One meta-analysis looked at all the published studies between 1966 and 2005 of CoQ10 in CHF. It found that CoQ10 had an overall value in improving ejection fraction and diastolic volume. Although the authors called for more large studies to confirm these results, they noted that CoQ10 is generally well tolerated, with few side effects (Weant KA et al 2005).
Researchers reviewed clinical trials involving 1,000 patients with CHF and found a significant improvement in exercise tolerance and a reduced NYHA class among those receiving CoQ10 (Mortensen SA 2003).
A study of 32 patients with NYHA class IV CHF who were waiting for a heart transplant showed improved cardiac function and a reduction of symptoms after CoQ10 supplementation (Berman M et al 2004).
Among patients with CHF who had a low ejection fraction (of less than 45 percent) and an elevated left ventricular diastolic volume, CoQ10 has been shown to reduce diastolic volume, which is associated with increased survival among patients undergoing coronary artery bypass surgery (Jeejeebhoy F et al 2002). The degree of benefit associated with CoQ10 among these patients was shown to correlate to the severity of their CHF (Taggart DP et al 1996).
Other studies have shown that withdrawing CoQ10 from patients with CHF resulted in decreased cardiac function and more severe symptoms (Judy WV et al 1991).

Increasing Energy and Blood Flow and Reducing Swelling: L-Carnitine and Taurine
Like CoQ10, the levels of L-carnitine and taurine in the heart muscle have been shown to decline among patients with CHF. By raising blood levels of both amino acids, patients with CHF have responded with fewer symptoms and improved cardiac function.

L-carnitine is essential for the transport of fatty acids into the heart muscle and mitochondria for energy production and is sensitive to the level of oxygen in the heart muscle. Studies have shown that patients with CHF who take L-carnitine have improved ejection fraction (Goa KL et al 1987; Mancini M et al 1992; Pucciarelli G et al 1992). There is evidence that L-carnitine helps the heart by preventing the enlargement of the left ventricle, which is a critical step in the progression of CHF. Studies have shown that L-carnitine can help prevent left ventricular enlargement after bypass surgery in patients who have had a heart attack (Taggart DP et al 1996). The same results were found among patients who have had an acute heart attack (Colonna P et al 2000). By improving ejection fraction and preventing enlargement of the left ventricle, L-carnitine addresses two of the most serious problems associated with CHF.

Taurine acts by a different mechanism. Patients with CHF often have swelling caused by excessive fluid buildup in the tissues, which puts additional pressure on the heart and accelerates CHF. Diuretics, one of the standard pharmaceutical therapies in CHF, are basically designed to flush excess fluid from the body. Taurine, through well-documented pathways, has a similar effect and has been shown to help reduce fluid levels, reducing the workload on the heart (Schaffer SW et al 2000).

Taurine has a number of other positive influences as well, including minimizing the effect of the protein angiotensin II (Schaffer SW et al 2000). Angiotensin II causes blood vessels to constrict. This is the same protein targeted by ACE inhibitors, which are a mainstay of conventional CHF treatment. By minimizing the effect of angiotensin II, taurine may reduce cardiac remodeling (Schaffer SW et al 2000).

Yes it is safe to take the MSM for a very long time,

greetings,
Corrij

Sharon Ley Dilated Cardiomyopathy Post Pregnancy

Geplaatst: ma mar 31, 2008 4:48 pm
door Sharon Lekky
Hi Corrij
Thanks for your speedy reply.
I have started back walking and slowly reintroducing weights.
Your email re supps was a sobre reminder! I've read all the research before and know how important these supps are but it's amazing I've let them slip. Well I do know why, I've been feeling so much better than I have and those things are so expensive. Also, I think I've just wanted to put all the CHF behind me, as if I could. :o Selective denial is an interesting adaptive mechanism.

Fortunately I have kept up COQ10 at 100mg per day.

Anyhow I start back tomorrow on aminos, MSM and 200mg of COQ10. I'll have to reintroduce MSM on low dose I expect.

Thanks again for your advice,
Sharon

Geplaatst: ma mar 31, 2008 8:48 pm
door Willy
We use MSM as an alternative oxigen system, so people have time to rebuild their heart (and not die during treatment)

I things go better you do not have to use MSM anymore

Stopping the supplements is not a good idea, and a bad idea if you stop q10, carnitine and taurine.

I had bad results with reducing supplements myself. :cry:

Re: Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)

Geplaatst: ma feb 08, 2016 12:37 pm
door Willy
Hello

Please help Corrij with here work and post the results of the treatment on the

RESULTS FORUM

viewforum.php?f=106

Explain

1, your condition before treatment
2. what you did
3. and what your have achieved

If you already posted a result message please update this message regularly

Thank You

Willy