Shane - Diagnosed in June with Dialated Cardiomyopathy

[shane]

Corrij,

Thank you for the nice compliments and best wishes. Shane probably would not have wanted me to post his picture..lol ! We'll say our prayers too, and trust that God has led us here and will continue to take good care of him!

Thanks so much!
Verona

[andreaQ]

Hello Verona,

Thanks so much for your kind thoughts about my daughter, Karla. I accidentally posted my reply on my own thread, and realised later that you may not get to read it there, so I've deleted it from my thread and posted it here (I use web forums quite a bit in my work, and I'm, getting better at discovering all the things they can do!) PS - since I wrote that post, Karla is souding more positive about trying the protocol - because I've had considerable improvement since starting the actual protocol. Also, when I research information about the supplements, their usefulness makes a lot of sense and matches up to a number of health issues we've had in the past. Anyway - my answer to your post is pasted below - thanks again for your kind thoughts.

Hello Verona,

I've thought of you often and what it must have been like to find out about your son's illness - very hard, but things do get better in time. I found out about my daughter's illness because of a car accident in 1998, and then I wasn't diagnosed till many years later - I'd hoped to stay healthy long enough to care for her, and now we're both on the same path!

This forum has been a godsend though. I'm not feeling very well today, but have continued to improve since I started on the supplements. I often feel so well that I overdo my exercise and then pay for it the next day (like today!). It's hard to accept that I can't do as much as I feel like doing even when I'm well - I'm usually a very active person and feel like there's so much more to do in life yet.

We learned yesterday that there is little that can be done to help my daughter's sleep apnoea, which means she will probably continue to depend on 2 machines for any quality of life (ICD and CPAP). She manages OK most days, but I think she has given up hope of ever having a normal life, e.g., with a boyfriend etc. The specialist has given us a new road to follow with the sleep apnoea, so well continue down that path and see what eventuates, but it doesn't sound like there's much to be gained. We'll see. In the meantime, she's thinking of staying with me for a while to reduce her Atenolol, which is keeping her blood pressure too low now that the CPAP has improved her cardiac functioning.

Every day, we learn more... Stay well and happy!

[shane]

Hi Andrea,

Thank you for your post! Shane had his first Stress Echo test today and did really well. The doctor said that he recently did one and Shane almost beat his reading and he doesn't have heart failure! I was stressed just watching him on the treadmill. I kept thnking what if this is too much for his heart...very scary, but we got through it!

Shane's BP is better than last time also. I prayed for good news and I feel that this was a good doctors visit this time. Anytime there is even a tiny positive turn, it feels great! I will pray for you and for Karla to help her sleep apnoea...that must really be tough on a young girl. Our kids are having to really mature before their time. They had to grow up fast and need to live much more responsibly than others their age....very tough!

Yes, we do learn a lot as we go...six months ago, I had never heard of an ejection fraction! Now it's part of my vocabulary on a regular basis.

Take good care,
Verona

[Corrij (therapeut)]

Hi Verona,

When is Shane getting his defibrillator implant?
Or maybe its already happen?

greetings,
Corrij

[shane]

Hi Corrij,

Thanks so much for asking! About 12:00 noon today, Shane had the procedure done. The doctor said it went very smooth and he is doing well! He is spending the night at the hospital tonight recovering and should be back home tomorrow (Tuesday).

Last week, his latest blood test showed that he needed to raise his comadin dose to make his blood a little thinner. How and when should we begin the protocol with the MSM? Should we wait a little longer for his comadin levels to stabilize before we begin with the CoQ10 again? They've had him on baby aspirin since last Thursday to get ready for the implant, but are putting him back on the coumadin.

Thank you!
Verona

[Corrij (therapeut)]

Hi Verona,

I am glad that everything went smooth, and that Shane is coming home today

Give him some time to give this all a place, and I suggest to start the protocol in a day of two.

Start with the MSM 1000 mg a day and try to build it up in a week time.

He can build up the MSM faster, so one day 1000 mg if everything is oke the next day 2000 mg en the day after 3000 mg.
The chromium and the carnitine, he can start the full dosis without any problem.

I should give him the Q 10 together with the rest of his supplements, and then try to stabilize the comadin, otherwise its difficult to get stable.
The amount of bloodthinners always variable.

The things you eat have also influence,COUMADIN® blocks the formation of vitamin K-dependent clotting factors in your liver. Vitamin K is needed to make clotting factors that help the blood to clot and prevent bleeding.

The amount of vitamin K in food may affect therapy with COUMADIN®. Eat a normal, balanced diet maintaining a consistent amount of vitamin K and avoid drastic changes in dietary habits. It is important to check with your healthcare provider before making any major changes to your diet.

In general, leafy, green vegetables and certain legumes and vegetable oils contain high amounts of vitamin K. Foods that appear to contain low amounts of vitamin K include roots, bulbs, tubers, the fleshy portion of fruits, fruit juices, and other beverages. Likewise, cereal grains and their milled products appear to be low in vitamin K.




H=High M=Medium L=Low
Foods* Vitamin K1 Content
BEVERAGES
Coffee caffeinated, brewed, decaffeinated, instant L
Cola regular and diet L
Milk L
Tea black, brewed † L
Water tap L


Vitamin K1 Content
DAIRY PRODUCTS/EGGS
Butter L
Cheddar cheese L
Eggs L
Sour cream L
Yogurt L


Vitamin K1 Content
GRAIN PRODUCTS
Bagel plain L
Bread assorted types L
Cereal assorted types L
Flour assorted types L
Oatmeal instant, dry L
Rice white L
Spaghetti dry L



Vitamin K1 Content
FRUITS
Apple (except peel of green apple) L
Banana L
Blueberries L
Cantaloupe L
Grapes L
Lemon L
Orange L
Peach L


Vitamin K1 Content
MEAT
Beef L
Chicken L
Ham L
Mackerel L
Pork L
Shrimp L
Tuna L
Turkey L


Portion Size Vitamin K1 Content
FATS AND DRESSINGS
Margarine 7 tbsp M
Mayonnaise 7 tbsp H
Oils
Canola 7 tbsp H
Salad 7 tbsp H
Soybean 7 tbsp H
Olive 7 tbsp M
Corn 7 tbsp L
Peanut 7 tbsp L
Safflower 7 tbsp L
Sesame 7 tbsp L
Sunflower 7 tbsp L


Portion Size Vitamin K1 Content
VEGETABLES
Asparagus 7 spears M
Avocado 1 small M
Beans green 3/4 cup L
Broccoli 1/2 cup H
Brussel sprouts 5 sprouts H
Cabbage 1 1/2 cups H
Cabbage red 1 1/2 cups M
Carrot 2/3 cups L
Cauliflower 1 cup L
Celery 2 1/2 stalks L
Collard greens 1/2 cup H
Corn 2/3 cup L
Cucumber peel removed 1 cup L
Eggplant 1 1/4 cups L
Endive raw 2 cups H
Green scallion raw 2/3 cup H
Kale raw leaf 3/4 cup H
Lettuce raw 1 3/4 cups H
bibb
red leaf
Lettuce iceberg, raw 5 leaves M
Mushroom 1 1/2 cups L
Mustard greens raw 1 1/2 cups H
Onion L
Parsley 1 1/2 cup chopped H
Peas green, cooked 2/3 cup M
Pepper green, raw L
Potato L
Pumpkin L
Sauerkraut canned 1/2 cup L
Spinach raw leaf 1 1/2 cups H
Tomato L
Turnip greens raw 1 1/2 cups chopped H
Watercress raw 3 cups chopped H


Portion Size Vitamin K1 Content
CONDIMENTS AND SWEETENERS
Honey L
Jell-O® Gelatin§ L
Peanut butter L
Pickle dill 1 medium M
Sugar white, granulated L


Although dried tea leaves are high in vitamin K content, brewed tea is not a significant source of vitamin K.

Portions in chart for foods of medium and high vitamin K content were calculated from estimated portions
provided in Reference 4. Portion sizes for foods low in vitamin K content apply to 3.5 ounces for beverages
and meats, medium-sized whole fruits, and 1 cup or less for other foods listed unless otherwise stated.

greetings,
Corrij

[shane]

Hi Corrij,

Thank you for the info! He should start the protocol on Thursday.

I appreciate all your help.
Verona

[shane]

Hi Corrij,

They have Shane taking antibiotics right now. This won't affect his protocol I assume?

Thanks so much!
Verona

[Corrij (therapeut)]

Hi Verona,

What is the reason they give him anti-biotics?

Not All Medicines Are Completely Good.

Fifty years ago antibiotics were universally hailed as miracle drugs, as they effectively wiped out such dreaded infectious diseases as tuberculosis, malaria, typhoid, and gonorrhea. But today, these same diseases are on the rise, because resistant "super bug" strains have survived and thrived . And because antibiotics indiscriminately destroy the beneficial microbes in our system along with the target pathogens, they bring their own unwanted side effects. The most common, and potentially dangerous is chronic diarrhea. High-risk groups include infants, travelers, the elderly, and hospital patients. Up to 22 percent of hospital patients on antibiotics get diarrhea, which can progress to colitis, toxic colon, and even death.

Good News
Reintroducing natural probiotics can often eliminate these largely man-made problems, along with a range of inflammatory bowel diseases, vaginal and urinary tract infections, and food allergies. Also known as "functional foods," they work by competing with pathogens for space, suppressing their growth with acidic secretions, enhancing the protective mucosal intestinal barriers , and activating the body's own germ-fighting antibodies. With these multiple mechanisms of action, probiotic supplements can be therapeutic or prophylactic (preventive).

So I think its very important to add a good pro-biotic if he is taking a anti-biotic.

greetings,
Corrij

[shane]

Hi Corrij,

They probably gave him antibiotics to lower the risk of infection because of the surgery.

Probiotics are very good, I take them daily.

Thank you,
Verona

[shane]

Hi Corrij,

In one of the articles you gave me a while back, it mentioned getting the Coumadin levels and INR stabilized before starting the CoQ10. So you think it is better for them to adjust the INR levels while taking the CoQ10 so that he can combine the two long term without risk of blood clotting?

Was he suppoosed to take the Chromium and Carnitine now too?

Thanks so much,
Verona

[Corrij (therapeut)]

Hi Verona,

Yes I think its better to start the protocol with the Q 10 and then stabilize the INR.

He can start the chromium and the carnitine as well.

How is he feeling at the moment?

greetings,
Corrij

[shane]

Hi Corrij,

Okay, I will get him started on the extra supplements. He is feeling okay, just sore because they implanted the defribulater under his chest muscle.

I thought that maybe he should start out at about 60 mg of CoQ10 at first and slowly build up.

What are your thoughts?

Thank you!
Verona

[Corrij (therapeut)]

Hi Verona,

It`s oke to start with 60 mg Q 10 and build it up slowly, for example one week 60 mg, two weeks 120 mg and then 180 mg,

Have a very nice weekend, and give Shane my best wishes,

greetings,
Corrij

[shane]

Hi Corrij,

Thank you! Shane reminded me to ask you if there is anything that would help with his insomnia.

Verona