treatment andrea

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

Berichtdoor andreaQ » Do Okt 04, 2007 10:21 am

Hello Corrij,

Thanks so much for replying so quickly. I had a lot of trouble trying
to understand the system, so I'm pleased that you received something -
and yes, the username and login are fine with me - thankyou. I'm from
Australia, and my Dutch isn't great!

The information you need follows below.

I have recently been diagosed with hypertrophic cardiomyopathy, after my
cardiologist found non-sustained ventricular arrythmias on a Holter
monitor. I have been getting regular checks in recent years, as my
daughter - my only child - was diagnosed with the disease 9 years ago.
She has an implanted defribrillator (or ICD) and the doctor would like
me to have one too. However, I also have problems with allergies and
I'm concerned having about a reaction to the ICD leads because of a
long-term history with chemical and food sensitivities. The doctor has
not been helpful. My ejection fraction is still fine at 69%. Until my
daughter was diagnosed, there was no evidence of cardiomyopthay in my
family, and we believed her case to be idiopathic - till now. My BP is
normal - average is 125/75, but I was treated with Avapro for high blood
pressure for 4 years. I stopped taking it 7 weeks ago and have had
significant improvement since then. I'm still unwell and experiencing
fatigue, periods of palpitations and chest discomfort. I have been
exercising 4 times a week, but do not feel well enough at the moment.
My nutrional restrictions are related to my allergies, i.e.,
salicylates, glutamates, and amines. I am currently not taking any
medication, except for some strong antibiotics which I will finish in 6
days - I was plagued with chest infections and kidney or bladder
infections till recently, but these seem to be clearing now. I'm also
taking magnesium supplements - 400 mg/d, and some herbal tablets for
stress/anxiety and allergies. I don't have much sugar any more, but I
used to - I'm much better at managing my food intake than when I was
younger. I can easily skip a meal or eat 3 hours later - no problem.

At the moment, I'm not sure if my heart is getting worse, but I'm quite
worried as my doctor says he can't do anything to help my symptoms
(apart from the ICD). Any help you can offer will be gratefully
accepted - I have always had more success with alternative therapies,
than with Western medicine. Thankyou Corij - warm regards.
Stay happy - warm regards.

andreaQ
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Berichtdoor andreaQ » Do Okt 04, 2007 10:42 am

PS Corij - I'm also thinking of starting potassium after reading material about mineral deficiencies. My allergies have led to long-standing diarrhoea and the Avapro made me pee heaps - my electrolytes were out of balance, and I suspect that's what caused the tachyarrhythmias. Just thought I should let you know. Thanks again for your help today - great to be able to talk about this and know it is accepted and understood! :P
Stay happy - warm regards.

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Do Okt 04, 2007 10:43 am

Hi Andrea,

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

Have you read the article Willy wrote?

http://www.candida-fibromyalgie-hypogly ... 5607#85607

It gives you a impression how we work :P

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

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Do Okt 04, 2007 10:58 am

Hi Andrea,

Do you have some blood test results for me?
How high is your bloodpressure at this moment?

About Avapro,

What side effects may occur?
Side effects cannot be anticipated. If any develop or change in intensity, tell your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking Avapro.

More common side effects may include:
Diarrhea, fatigue, respiratory tract infection
In people taking Avapro for diabetic kidney disease, the most common side effects are dizziness, dizziness when standing up, or low blood pressure when standing up.

Why should Avapro not be prescribed?
If Avapro gives you an allergic reaction, you will not be able to use Avapro.

Special warnings about Avapro
In rare cases, Avapro can cause a severe drop in blood pressure. The problem is more likely if your body's supply of water has been depleted by dialysis treatments or high doses of diuretics. Symptoms include light-headedness, dizziness, and faintness, and are more likely when you first start taking the drug. Call your doctor if they occur. You may need to have your dose adjusted.

If you have kidney disease, Avapro must be used with caution.

Possible food and drug interactions when taking Avapro
The chances of an interaction with Avapro are low. Check with your doctor, however, before combining it with tolbutamide (Orinase).

A little biological lesson :wink:

Approximately 300 million prescriptions for antibiotics are filled in the United States every year.1 Although antibiotics play a crucial role in the health care system, their widespread use is increasingly causing some serious health consequences. This article will explain the benefits of the beneficial or "good"bacteria that populate the gastrointestinal (GI) tract, and the multiple problems that can develop when the intestinal microflora is upset. It also will cover a simple yet critically important patient counseling opportunity for pharmacists with regard to antibiotics.

The human intestinal microflora contains >100 trillion living bacteria, comprising from 100 to 400 bacterial species.2 These organisms regulate important functions in the body, such as the digestion and absorption of nutrients, and aspects of the immune system.

A healthy human GI tract contains ~85% to 90% good bacteria. Everyone's GI tract harbors some "bad"bacteria and yeast organisms, but when they are present in small numbers (10%-15% of the GI population) they do not cause problems. When the balance between the good and bad bacteria is upset, however, dysbiosis can develop. Dysbiosis refers to the symptoms and problems resulting from an unbalanced or dysfunctional intestinal microflora.

The primary cause of dysbiosis is the use of antibiotics, which kill >99% of the good bacteria.3 Other factors that can cause or contribute to the development of dysbiosis include stress, birth control pills, and junk foods.

With dysbiosis, toxin-producing intestinal bacteria can cause a wide variety of symptoms. Digestive complaints are most common, including gas, bloating, intestinal pain and inflammation, and constipation and/or diarrhea. Unfortunately, the cause of these symptoms is frequently misunderstood and misdiagnosed.

The 2 most important species of beneficial bacteria are Lactobacillus acidophilus, which primarily colonizes the small intestine, and Bifidobacterium bifidum, which inhabits the large intestine. Lactobacillus bacteria produce lactic acid, which creates a slightly acidic pH in the upper GI tract. This environment is favorable for the beneficial bacteria, but it inhibits the growth of acidsensitive pathogenic bacteria.4 The lactobacilli have another important immune system-enhancing feature, which is their ability to produce a variety of natural antibiotics in the intestines, such as lactocidin, lactobicillin, lactobreven, and acidolin.5 L acidophilus bacteria also produce the enzyme lactase, which aids in the digestion of lactose, or milk sugar. Many lactose-intolerant people benefit by taking acidophilus with a meal containing milk or dairy products.

In the large intestine, bifidobacteria produce short-chain fatty acids (SCFAs), including acetic, propionic, butyric, lactic, and formic acids. The most plentiful SCFA produced by bifidobacteria is acetic acid, which exerts a wide range of antimicrobial activity against yeasts, molds, and bacteria.6 Healthy intestinal microflora actively produce organic acids and natural antibiotics, which are an important part of the immune system. Other studies suggest that the beneficial bacteria provide protection against cancer. Various strains of beneficial bacteria reportedly aid in the detoxification and elimination of carcinogens, modulation of procarcinogenic enzymes, and suppression of tumor growth rates.7,8

A study has revealed that beneficial bacteria in the GI tract also play an important role in whole-body immunity. Researchers initially measured the phagocytic index in 2 groups of participants. The phagocytic index is a measure of how effectively neutrophils and macrophages (types of white blood cells) attack and destroy bacteria, viruses, and other foreign invaders throughout the body. The pretest phagocytic index was 38.9% in group 1 and 46.3% in group 2. After supplementing with bificobacteria for 3 weeks, the phagocytic index in group 1 increased to 86.5%. After supplementing with L acidophilus for 3 weeks, the phagocytic index in group 2 increased to 84.4%. These results represent a dramatic increase in the strength of the immune system in these participants.9

The quality and potency of probiotic products varies greatly. After finishing the course of antibiotics, take a probiotic twice daily. Each dose should contain at least 1 to 2 billion live bacteria.

If you have some kind of arrythmias 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.

I suggest that you start with 200mcg Chromium GFT, you can start this without a problem.
MSM, the final dosage is 3000 mg but we’ll build it up slowly, I suggest 500 mg for the first few days, If this goes well then 500 extra untill you are at the 3000 mg.
You have to build it up slowly because MSM detoxifies and it can cause headache, diarrhoea or tiredness.
Msm and chromium are not a part of the heart failure protocol but they are meant to give you more energy.

Furthermore I would like to advice you to start with acetyl L-Carnitine 3x 500 mg a day. (are you allergic for aminoacids?)

The link below gives you more info on L-Carnitine

http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

If you have any questions please dont hesitate,

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

will not have good health for enough time.

andreaQ
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Lid geworden op: Do Okt 04, 2007 10:14 am

Berichtdoor andreaQ » Vr Okt 05, 2007 2:33 am

Hello again Corij,

And yes, I have read Willie's article, and lots more on the site. It's wonderful to find others who understand the experience and frustration that can occur with health management in our so-called civilised world!

I am familiar with the side effects of Avapro and had continued to take it despite noticing that I only felt well in the morning before I took it. I had most of the low incidence side effects and was feeling increasingly unwell, to the extent that I thought I'd have to quit my job. I then stopped taking it with my doctor's knowledge and my BP now averages 122-125/75-78, with average heart rate around 75-78 (I monitor it at home). I have had recurrent respiratory infections for two years and was invesigated for mycobacterial tuberculosis and bronchectiasis - the specialist was getting frustrated that she could not pin down an exact diagnosis, and I was having increasing blood loss with each infection. I had also developed acute allergic reactions by this time, including acute colitis, rashes, sores that wouldn't heal, gout, myalgia, athralgia...blah, blah... I managed to get my blood results dating back over 18 months, and they show low LDH, high anion gap (15) low bicarbonate (21) low iron (7) and CRP of 8-10. All of these are now near normal, after my attempts at finding my own nutritional solutions and quitting Avapro. I also developed sleep apnoea/hypopnaea syndrome during this time, which may be settling now, but I'm not sure - the specialist is seeing how I go with weight loss as a solution (sleep disturbance is a side effect of Avapro too). My arrhythmias have continued to improve too, but I still have some way to go overall. I absolutely hate taking antibiotics, but was also getting opportunistic lung infections - such as pseudomonas - which led to more blood loss. I already have the supplements to begin re-populating my bowel flora, as I am very close now to being infection free (for the first time in 2 years - unbelievable!). This all sounds so terrible when I read it back, but I have never given up reading and researching...and if I can find a way forward I might be able to help my daughter who is battling cardiomyopathy and severe sleep apnoea (no weight issues though). A story for another day...

I don't know what MSM is - can you tell me what the letters stand for? The Chromium is easy to get here, and I managed to find acetyl L-Carnitine powder last night - but don't know how to titrate the dose in powder form. Looks like I won't take potassium after all though - it is now a regulated substance in Australia.

Thankyou again Corij! I grew up in a time when allergies weren't accepted by doctors, so it has been a long road for me to become educated and self-directed - and well (for a time). I will monitor my sensitivities through this time, but my allergies are already back to 'normal' (i.e., manageable levels) since I began taking magnesium. If there are any suspect reactions, I will let you know straight away. I'm more worried about the cardiomyopathy, and the quality of life I stand to lose. PS - my cardiologist says he can do nothing for my symptoms because I had a bad reaction to Atenolol - so his only goal is to keep me alive with an ICD, without regard to my quality of life. This is why I have come to you now - thankyou for 'listening' :D
Stay happy - warm regards.

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Vr Okt 05, 2007 9:54 am

Hello Andrea,

It`s a sad story your telling me, but I hope you have some faith in me :D

I really do believe that we can improve the condition of your heart and you can have a "normal"live.Many people on the forum have proven this, including Willy himself and my own husband.

About the MSM,

http://www.candida-fibromyalgie-hypogly ... php?t=3607

Sulfur Helps Maintain Proper pH Balance
Sulfur also helps to maintain overall body balance between acidity and alkalinity, and works importantly with the liver to excrete bile.
Research indicates that perhaps sulfur's most important health role is in carbohydrate metabolism, which is significant for hypoglycemics and diabetics.
Sulfur is a significant component of insulin, the protein hormone secreted by the pancreas that is essential to the metabolism of carbohydrates. A lack of nutritional sulfur in the diet can result in low insulin production.
On the other hand, a diet that contains adequate amounts of sulfur might increase the body's ability to produce insulin to the point where insulin injections can be reduced.
Because nutritional sulfur helps keep skin, hair and nails healthy, it has been referred to as "Nature's Beauty Mineral."


Allergies
An allergic reaction is simply your body's reaction to something foreign in your system. These foreign proteins and free radicals invade your body and cause reactions and problems. Your body responds with a sneeze, wheeze, swollen, puffy eyes, etc.
When you take MSM, your cells become more permeable, enabling your body to quickly wash out any foreign particles in your system. Every twelve hours your body is designed to flush each cell of any unwanted debris. When your diet is deficient, the cell walls become hard and stiff and this hinders fluid flow through the cell walls.
MSM softens the cell walls, allowing foreign proteins and free radicals to be washed out of your system. If enough MSM is taken, all of the foreign particles can be flushed from your system and your allergies will no longer occur.



What is MSM-Methyl-sulfonyl-methane?

MSM is an organic sulfur. This sulfur plays an essential role in human nutrition which is commonly overlooked.
MSM is used by the body to continually create new healthy cells to replace the old ones. Sulfur works with thiamine, pantothenic acid, biotin, and lipoic acid, which are needed for metabolism and strong nerve health. Sulfur also plays a part in tissue respiration, the process that oxygen and other substances are used to build cells and release energy. It is an essential mineral for the human body and plays many roles. Sulfur has the following responsibilities in the body: 1) Dehydration and Detoxification, 2) Energy, and 3) Structure and Function.

Supplements of MSM assures that the body has an adequate organic source for the areas that it may be lacking sulfur.

Several studies have examined sulfur-bearing vegetables and herbs and found that they strongly inhibit carcinogens from forming in the body. Carcinogenic substances such as tobacco, pesticide residues, and chemicals found in certain drugs all weaken the immune system. If the body is maintained in good health standing, not abused or overwhelmed with chemicals in foods or drugs, stress, obesity, nutrient deficiencies, then the body can fight off cancerous cells.


What MSM Does
MSM makes cell walls permeable, allowing water and nutrients to flow freely into cells and allowing wastes and toxins to properly flow out. The building blocks of the body, amino acids, are all sulfur bonders and play a major role in the production of hormones and enzymes which regulate the body''s activities.
MSM and Vitamin C supplementation are used by the body together to help build healthy new cells. MSM helps provide the flexible bond between the cells. Without MSM, the new cell is not permeable, and osmosis is hampered. These cells lose their flexibility, like scar tissue, wrinkles, vericose veins, hardened arteries or the damaged lung tissues of a person with emphysema.

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

will not have good health for enough time.

andreaQ
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Berichtdoor andreaQ » Vr Okt 05, 2007 4:33 pm

Thankyou again Corij,

I am now taking MSM, Chromium picolonate, and acetyl L-Carnitine. Had a great day today where I felt quite well, so I did a session at the gym tonight. Had to pull back on the intensity level after 35 minutes to keep my heart rate within range, and then had some mild angina for a while afterwards. I am careful about exercise and have an exercise physiologist who monitors my program, which has just been upgraded a bit. My arrythmias are better today too, after acetyl L-Carnitine and bananas yesterday - but too early to get excited of course. I'm feeling very unwell tonight though with joint and muscle pain, but I think this is the antibiotic (Ciprofloxacin) which is very strong - I was very very ill last time I took this drug too. The pain is quite bad, so I'll stop taking them now to see whether I'm reacting to any of the new substances - just to be sure. I have read about each of the nutrients and cannot see any likely problems, but will still take precautions for the next few days. My chest infection is much better anyway with all the changes I've made in recent months.

I do not think my story is so sad Corij - I have many good things in my life too, and living with life threatening illness (mine and my daughter's) means that I have learned what is important in life. I remain positive and clear about my options, and definitely have faith in what you are telling me. I had already read a lot of the research before I found your site, as I have access to medical journals from my desktop at work - I believe everyone needs to educate themselves about such things or we are at the mercy of ignorance.....

I will let you know how I go by early next week. This feels like a new challenge to sink my teeth into - I'm looking forward to what lies ahead :P

Tot ziens Corij!
(my ex husband was Dutch - from Julianadorp in Noord Holland)
Stay happy - warm regards.

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Za Okt 06, 2007 9:28 pm

Hi Andrea,

How old is your daughter?
Is she taking a lot of medicines?

You can follow the protocol together.

Youre right if your saying everyone needs to educate, the motto of our forum is

KNOWLEDGE=POWER :D

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

will not have good health for enough time.

andreaQ
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Berichtdoor andreaQ » Zo Okt 07, 2007 3:28 pm

Hello Corij,

My daughter is 29 and is living independently. She was diagnosed with cardiomyopathy 9 years ago after a car accident - it was a great shock to us at the time and it took a while for her to adjust. She is only on 150 mg Atenolol daily, but has an implanted defribrillator as her main defense against cardiac arrest. The device has never fired or 'shocked' her, and she has only had 2 episodes of non-sustained ventricular arrythmia. She has had sleep problems all her life, and was diagnosed with severe sleep apnoea 12 months ago. Since starting on CPAP treatment for the sleep apnoea, her heart symptoms have almost disappeared and she is often quite well - but cannot stay well without the CPAP machine. We are going to see whether a surgical solution can help with the sleep apnoea if at all possible - part of our quest to find long term answers. When we know more about what can be done to reduce her dependence on CPAP, she will look at the protocol for her heart too. It is clear that we both have the gene for cardiomyopathy, but it may have been triggered by different things for both of us.

Hope you took some time off over the weekend Corij! All the best for now....
Stay happy - warm regards.

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Zo Okt 07, 2007 9:21 pm

Hello Andrea,

Thank you for your update :D

Recent studies have suggested that sleep apnea-a form of sleep-disordered breathing in which sleep is repeatedly interrupted by episodes of decreased or absent breathing-may be linked to pathogenesis and progression of numerous disease states. In particular, cardiovascular conditions such as hypertension, myocardial ischemia, and congestive heart failure are associated with sleep disordered breathing. There also may be a link between diabetes and sleep apnea. While pharmacologic treatments have shown little efficacy, treatment with continuous positive airway pressure often is beneficial. Increasingly, clinicians are considering sleep apnea as a potential risk factor for many diseases and conditions.

PMID: 17658956 [PubMed - indexed for MEDLINE]

Sleep-disordered breathing is very common and is associated with an increased risk of cardiovascular disease, cardiac arrhythmia and stroke. There are two types of sleep apnea: obstructive and central. The objective of this review is to provide a broad perspective of the pathophysiological and clinical aspects of the two types of apnea and to discuss their cardiovascular adverse effects. The diagnosis of sleep apnea syndrome is based on polysomnography, and severity is measured with an apnea-hypopnea index that counts the total number of apneas per hour of sleep. Recent large epidemiologic studies have shown that sleep apnea affects about 16% of men and 5% of women between 30 and 65 years of age. Obstructive sleep apnea is characterized by abnormal collapse of the pharyngeal airway during sleep, snoring, vigorous inspiratory efforts causing frequent arousal, and excessive daytime drowsiness. Central sleep apnea with Cheyne-Stokes respiration is a form of periodic breathing with frequent periods of hyperventilation, and carries a poor prognosis in patients with heart failure. Obstructive apnea can also have substantial health consequences. Although the exact mechanism linking sleep apnea with cardiovascular disease is unknown, there is evidence that obstructive apnea is associated with a group of proinflammatory and prothrombic factors that are also important in the development of atherosclerosis. Nocturnal and daytime sympathetic activity is elevated after sleep apnea. Autonomic abnormalities include an increased resting heart rate, decreased cardiac rhythm activity, and increased blood pressure variability. Obstructive apnea is associated with endothelial dysfunction, increased C-reactive protein and cytokine expression, elevated fibrinogen levels and decreased fibrinolytic activity. Enhanced platelet activity and aggregation, leukocyte adhesion and accumulation of endothelial cells are common in both obstructive apnea and atherosclerosis. Surges in sympathetic activity, blood pressure, ventricular wall tension and afterload adversely affect ventricular function. Many studies have shown that patients with obstructive apnea have an increased incidence of daytime hypertension, and this syndrome is recognized as an independent risk factor for hypertension. Obstructive apnea is associated with myocardial ischemia (silent or symptomatic), acute coronary events, stroke and transient ischemic attacks, cardiac arrhythmia, pulmonary hypertension and heart failure. Central sleep apnea is frequent in severe heart failure. Most heart failure patients with pulmonary congestion chronically hyperventilate because of stimulation of vagal irritant receptors and central and peripheral chemosensitivity. When PaCO2 falls below the threshold required to stimulate breathing, the central drive to respiratory muscles and air inflow ceases and central apnea ensues. Apnea, hypoxia, CO2 retention and arousals provoke elevated sympathetic activity, increased afterload and elevated left ventricular transmural pressure, and promote the progression of heart failure. Tentative relationships have been identified between central apnea and markers of inflammation, oxidative stress and endothelial dysfunction. Recent mid-terms trials showed that nocturnal use of positive airway pressure in patients with the two types of apnea alleviates symptoms, reduces sympathetic activity, improves ventricular function and quality of life, and reduces daytime drowsiness. More studies are needed to understand the mechanisms underlying the relationship between sleep apnea and cardiovascular disease, but clinicians should be aware of this link and should attempt to identify patients with these syndromes.

My weekend was very good Andrea, but there is always a little forumtime left :D A forum never sleeps :wink:

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

will not have good health for enough time.

andreaQ
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Berichtdoor andreaQ » Di Okt 09, 2007 8:13 am

Hello again Corij,

Just thought I'd let you know how I'm going since I began the protocol last week. I had headaches and tiredness for the first four days, and they have settled now . I stopped taking the Ciprofloxacin as well, and the joint and muscle pain has disappeared - which means I'm tolerating the new nutrients without any problems. My arrhythmias and breathlessness problems have settled quite a bit since I doubled my magnesium dose last week - I'm now on 2 x 400mg of Magnesium Orotate (had been on 400 mg for a few weeks previously as part of my attempts to help myself). Feeling better - but not well - and looking forward to the next step. And I'm sleeping like a baby! I'll start increasing the MSM from tomorrow and have located a New Zealand supplier of Solgar products to make things easier - it's quite tricky using the powder form of MSM and acetyl L-Carnitine. I'll keep all my test results with me too, so I can answer your questions about blood tests and cardiac measures properly.

I am so grateful for all your help, information, and reassurance. I've read a lot of the posts from others in this forum, which has been helpful and enlightening. I discovered that your husband had cardiomyopathy - it's great that he's doing well now! It must have been very worrying for you both in the early days of his illness. It's amazing that this service exists, and especially people like you and Willie - thankyou again Corij - tot ziens!
Stay happy - warm regards.

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Di Okt 09, 2007 10:31 am

Hello Andrea,

Thank you very much for your kind words :D

Build the MSM up slowly because your having a little bit of detoxification problems.

Did they know wich bacteria gives you that chest infection?

Yes Andrea my husband was 9 years ago so sick that they put him on the transplantation list,he also is a diabetic, and because of this, he would never get a donorheart,(this is typical Dutch,some one putting on a list, and at the same time telling him that he never gets one :-? ) so we where a little desperate at that time.We had nothing to loose and he started the protocol with help and support of Willy. At this moment he is doing great, he works full time and we have a small company of our own, so he is having two jobs now :wink:

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

will not have good health for enough time.

andreaQ
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Berichten: 22
Lid geworden op: Do Okt 04, 2007 10:14 am

Berichtdoor andreaQ » Vr Okt 12, 2007 4:35 am

Hello again Corij,

Have been resting a bit after developing tachycardia during my warmup :o at the gym on Wednesday night. I think I may have done too much on the previous 2 nights. My workout has just been upgraded and I'm still learning not to push myself, even when I feel well. Other than that, my symptoms are improving slowly. My palpitations are more like flutters now, instead of thumping in my chest, and I have periods time where I have none at all. But I know I have a long way to go. I still get tired and very breathless, and have constant pain in my left shoulder blade. Stress seems to be the biggest trigger for me - have you heard if other people's cardiomyopathy is affected by stress?

Thankyou for asking about my chest infection. It appears to be improving now too, and I'm wondering if it's the carnitine. The green colour has disappeared in the last few days, and I only bring up clear mucous now - very strange. The respiratory doctor was getting frustrated with me because she couldn't find out what the bug was after 18 months of tests (sputum, bronchoscopy). At first she thought it was mycobacterial tuberculosis, but TB is in our water supply and rarely causes problems. My flare-ups were caused by another bug, but she never discovered which one. She began to suspect chronic bronchitis, or bronchiectasis. The symptoms settled quite a bit after I quit the Avapro though, and is improving more now. I believe it was one of the side effects of long term Avapro, but only time will tell.

Do you mind if I ask whether cardiomyopathy was in your husband's family? It isn't anywhere in my family history - and I come from a very big and long-lived family - yet my daughter and I both have the disease. I'm curious about other people's situations, as there seems to be few answers about the causes.

Thanks again for 'listening' Corij - I appreciate every word of the forum. It's such a great support. Have a great weekend!
Stay happy - warm regards.

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Vr Okt 12, 2007 11:38 am

Hello Andrea,

Emotional and physical stresses have a negative impact on the heart and the vascular system. Acute stress happens all at once; chronic stress occurs over a longer time period. Stress hormones (catecholamines, including epinephrine, which is also known as adrenaline) have damaging effects if the heart is exposed to elevated catecholamine levels for a long time. Stress can cause increased oxygen demand on the body, spasm of the coronary (heart) blood vessels, and electrical instability in the heart's conduction system.
Chronic stress has been shown to increase the heart rate and blood pressure, making the heart work harder to produce the blood flow needed for bodily functions. Long-term elevations in blood pressure, also seen with essential hypertension (high blood pressure not related to stress), are harmful and can lead to myocardial infarction (heart attack), heart failure, abnormal heart rhythms, and stroke.

Sinus tachycardia is the same rhythm as normal sinus rhythm except the rate is greater than 100 beats per minute at rest. Many processes can result in the heart rate increasing at rest. Sinus tachycardia can develop as a desirable response to exercise, pregnancy, and emotion. At times sinus tachycardia may reflect a compensatory adjustment by the circulatory system via the sympathetic nervous system to conditions such as low blood pressure, low blood volume impaired ability of the blood to transport oxygen, or ineffective ventricular ejection. Clinical examples of situations when sinus tachycardia occurs as a compensatory mechanism include anemia, post-surgical blood loss, heart failure, and fever. Sinus tachycardia may also occur in situations associated with abnormally elevated energy expenditure such as pain, cancer, endocrine disorders, and drug toxicity or drug withdrawal. Sinus tachycardia can also be brought on by drugs, including prescription drugs, "recreational" drugs, and over the counter drugs. Sometimes there is not a demonstrable cause. In this situation, the rhythm is referred to as inappropriate sinus tachycardia. In these cases, the sinus node over responds to influences that effect heart rate causing the heart rate to be too fast at rest and with minimal exercise

Role of genes in cardiomyopathy
Scientists have discovered more than 100 gene mutations that may play a role in the development of cardiomyopathy. The following genes have been linked to cardiomyopathy:
• Actin. A type of sarcomere protein gene, a group of genes that form the basic structure of muscle functions. Actin is believed to affect the contractions of the heart, and defects in this gene have been found to lead to hypertrophic cardiomyopathy.
• Desmin. An intermediate filament between cardiac and skeletal muscle. A mutation of this gene has been linked to cases of inherited cardiomyopathy.
• Dystrophin. A gene that plays a role in muscle function. Defects in this gene can lead to an inability for muscle to regenerate. Specific dystrophin gene mutations have been linked to cardiomyopathy, muscular dystrophy and other disorders.
• Tafazzin. A gene involved in musculoskeletal function.
• ß-myosin. One of a family of genes responsible for creating myosin, a protein involved in the contraction and relaxation of the heart muscle.
• Troponin T. A gene responsible for creating troponin T, a protein involved in the contraction and relaxation of the heart muscle.
Additional genetic research may lead to new tests, treatments and prevention methods for cardiomyopathy
Hypertrophic cardiomyopathy can be inherited. It also can develop over time because of high blood pressure or aging. Often, the cause of hypertrophic cardiomyopathy is unknown.

My husband is the only one in his whole family with heart problems.
The cardiologist thought it was caused by a virus, but I believe there is a relation between his diabetic and his cardiomyopathy.
When we ask the cardiologist about this, he looked suprised, but he agree that it could be a diabetic cardiomyopathy. :-?

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

will not have good health for enough time.

andreaQ
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Berichten: 22
Lid geworden op: Do Okt 04, 2007 10:14 am

Berichtdoor andreaQ » Wo Okt 31, 2007 3:28 am

Hello Corrij,

Welcome back from your break - hope you are rested and well 8)

I haven't been saying much on the forum but have been reading it regularly. I feel very much for Verona, as I know how hard it is to come to terms with your child's life-threatening illness (even when they're grownups!). It's also nice to see some other Australians on the forum (Doug, Sharon), and people from everywhere!

I'm now up to the full dose of MSM and ready to begin the next phase of the protocol in a few days. I'm taking the carnitine first thing every morning, at least 30 minutes before food or other supplements, including chromium, magnesium and flaxseed tablets. I've increased my magnesium to 6 tablets a day though, because of the arrythmias - they're magnesium orotate, so they only contain about 30m of actual magnesium per tablet.

So far, my arrythmias have continued to settle - most days - and I am feeling increasingly well. I'm also doing more with my days, but allowing myself to rest when I feel the need. I've discovered that there's a strong link between my allergies and arrythmias - no real surprise! I felt so well that I let my guard down with food intake, and it affected my heart rhythm and exercise tolerance - the efffects last for a few days. So...I continue to learn where my limits are. :wink:

I'm reading heaps about othomolecular medicine, and it all makes so much sense to me - especially because of my allergies and food intolerance. There isn't much happening here in Australia, but one of the foremost advocates of integrative medicine has a clinic here in Brisbane (very expensive though!). The medical world seems to be a long way behind this incredibly important area of science.

Thankyou again for all your incredible work - I still can't belive this service exists. I also hope that there are more success stories to follow, so the medical world will sit up and take notice! Have a lovely day Corrij - and fellow forum folk!
Stay happy - warm regards.


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