Shane - Diagnosed in June with Dialated Cardiomyopathy

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
shane
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Bericht door shane » do okt 18, 2007 5:02 pm

I did have him start the Protocol yesterday. :)

Corrij (therapeut)
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Bericht door Corrij (therapeut) » do okt 18, 2007 5:10 pm

Hi Verona,

Starting the protocol will not effect the results of next week.
Thats to soon :D

I hope it will be effected the results in a few months,

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

shane
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Bericht door shane » do okt 18, 2007 5:55 pm

Thank you! Corrij ... You have really changed my outlook on this!
Take care,
Verona

shane
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Bericht door shane » vr okt 26, 2007 5:22 pm

Hi Corrij,

Have you heard of CoQ10 causing decreased international normalized ratio or INR when taken with Coumadin? I found an American article about this online..they may have found this in some case studies. I don't think it has been proven, though.

Hope your holiday was great!
Thank you :D
Verona

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Bericht door Corrij (therapeut) » za okt 27, 2007 12:58 pm

Hi Verona,

nutrient affecting drug performance and toxicity: Warfarin

• mechanism: Warfarin exerts its therapeutic effect by interfering with vitamin K metabolism. Coenzyme Q10, also known as Ubiquinone or Ubidecarenone, has a chemical structure similar to the various forms of vitamin K.

• research: The research literature has contains some reports of Coenzyme Q10 interfering with the activity of warfarin. A decline in responsiveness to warfarin has been observed among patients using warfarin who have added CoQ10 to their supplement intake. When the individuals stopped taking the CoQ10 their previous responsiveness to warfarin resumed.
(Spigset O. Lancet 1994;344:1372-1373; Landbo C, Almdal TP. Ugeskr Laeger. 1998 May 25;160(22):3226-3227; Combs AB, et al. Res Commun Chem Pathol Pharmacol. 1976 Jan;13(1):109-114.)

• nutritional concerns: The clinical significance and frequency of occurrence of this interaction are uncertain even though the theoretical foundation for this interaction is sound and some case reports have come forth. Grounds for concern are amplified because of the high probability of overlap among the patient populations interested in benefits of coenzyme Q10 for cerebrovascular benefits and those being treated for the disorders for which warfarin is often prescribed. Individuals using warfarin should be aware of the possible risk of treatment failure when taking coenzyme Q10 and should consult their prescribing physician before beginning supplementation with CoQ10.


How often will the check Shane`s INR?You can always ask for a different blood thinner like Acenocoumarol


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

Douglas
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Bericht door Douglas » ma okt 29, 2007 8:36 am

Hi Verona,
For interests sake, I had read about this prior to starting CoQ10. What I did was commence the CoQ10 1 week before an INR test. That went well, so I stopped the CoQ10 then started 2 weeks before my next INR, and have continued to take it ever since.

I take 120mg twice a day.

My INR was always about 2.5. It is now about 2.0 - 2.1.

Hope this helps in some way.

Doug.
8)

shane
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Bericht door shane » ma okt 29, 2007 11:20 pm

Hi Doug,

As of Friday, I had Shane stop taking the CoQ10 because his blood (proton?) tests were continually showing that he still needed to take more Coumaden because of a blood clot and his blood being too thick.

I'm not exactly sure what an INR test is, but he does get blood tests every 10 days or so to check his coumaden levels. We will ask when he goes back in to this cardiologist.

Do you take the CoQ10 continually now? Unfortunately they said that they don't use the alternative drug called Acenocoumarol that Corrij mentioned. When he sees his cardiologist this week, maybe he can get a reason why not. They are also going to talk to him about a defibrulator. Something I wish he didn't have to get, they are taking precautions because of his EF being under 20%.

Thanks so much for your reply, I really would like to get him back on the CoQ10 soon.

Verona

Douglas
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Bericht door Douglas » di okt 30, 2007 12:53 am

AArrrrrrgghhh. I just typed all this, then work lost my connection and now I have to retype it! :x

:D INR = International Normalised Ratio. Basically, it means that my INR is 2.0 and that means it takes 2x as long to clot as a normal person. My doctor likes to keep me between 2.0 -3.0.

I take CoQ10 twice a day. 2 x 120mg tablets. I see more effect if I eat vegetables high in Vitamin K.

I guess we all wish we didn't have to get machinery, but take it from me a defib is a great bit of technology.

I have had mine for 5 years and I don't regret it.

It is a simple op to install it. YES it hurts when it delivers a therapy, if you are conscious. I have never passed out with mine. It is like being kicked in the chest by a horse. You here the crack of the shock in your ears and it drops me to my knees. My wife tells me my scream is pretty good too. :D

You as an observer probably will not see anything except a shout or the patient dropping to the ground.

NOW THE GOOD BIT. Every time mine has gone off, I have IMMEDIATELY felt better straight away. This is because the defib does it's job and resets my heart rhytmn to sinus rhythmn. (I hate spelling that word :-? ) I mean it is just a great feeling. The shock is only painful for that brief instant when it hits, and I have had worse pain than that.

I would voluntarily shock myself if I could, to reset my heart some times.

It is great technology and you should not be scared of it.

As Corrij and so many others have said, keep thinking positive. I visualise my heart beating normally and getting smaller, this helps immensely and my cardiologist is very pleased with my progress.

Keep posting and I'll keep reading.

All the best.
Doug 8)

shane
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Bericht door shane » di okt 30, 2007 6:25 am

Doug,

Sorry about your connection...been there! Thank you so much for your insight about the defibrulator. I guess with my son only being 22 and having to get one seems strange. I appreciate your reassurance. :)

Are you still currently taking coumaden? So glad to hear you are getting better. Are you taking the supplements on Corrij and Willy's protocol?

Thanks!
Verona

Douglas
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Bericht door Douglas » di okt 30, 2007 6:42 am

Hi Verona,
Yep, I am on Coumadin/Warfarin for ever and a day, unless I can control the arrythmias. It is only because of the Atrial Fibrillation that I have to take it.

Corrij and Willy have been helping me for a few months now. I am following their protocol, a bit haphazardly at times, but generally sticking to it.

I have much better energy but the real difference for me has been the clearing of the fog from my mind. I used to be above average at work and problem solving, but when I got ill and started all my prescription meds, my brain "fogged" and I could just do what I had to do and not much else.

I would describe myself as "surfacing" from a muddy pool. :o

I am making big inroads at work again and am feeling pretty darn good.

Cheers
Doug

Corrij (therapeut)
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Bericht door Corrij (therapeut) » vr nov 02, 2007 11:43 am

Hi Corrij,

We went to the cardiologist today and after not taking the CoQ10 for about five days, Shane's blood test or INR test was good and he doesn't have to raise his Coumadin dose again. Before this they had to keep increasing it, that's why I took him off the CoQ10. He currently has a blood clot they are tryng to control.

I asked the doctor if we can substitute anything for the Coumadin, and he said there isn't anything available.

There is a chance Shane can eventually go off the Coumadin, but not sure when. Shane's protocol progress is that he started today on 2000 mg MSM, and has been taking the Chromium.

They are also scheduling his defribulator implant for the beginning of December because of his EF being only 15%.

Let me know if you have any suggestions. Also if you'd rather have me post this on the main boards, please let me know.

Thanks so much for all your help,
Verona
Those who do not have enough time for good health,
will not have good health for enough time.

Corrij (therapeut)
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Bericht door Corrij (therapeut) » vr nov 02, 2007 11:44 am

Hi Verona,

I`ve been surching the web and found this,


http://www.cardiosource.com/rapidnewssu ... 10&DoW=Sun

Ximelagatran as effective and safe as coumadin
At the American Heart Association meetings in Orlando last week, investigators reported the results of the SPORTIF V trial, a study designed to show whether ximelagatran - a substitute for coumadin - is at least as effective as coumadin in high-risk patients with atrial fibrillation.
Patients with atrial fibrillation have an increased risk of stroke due to the formation of blood clots in the heart. Coumadin has been shown to significantly reduce the risk of stroke in these patients. But coumadin is a difficult drug to use correctly - careful monitoring of the INR (a measure of "blood thinness") and frequent adjusting of coumadin dosage is necessary to assure effective treatment and to reduce the risk of coumadin-induced bleeding complications.

Ximelagatran, on the other hand, can be given as a simple twice per day dose, with no monitoring of blood tests or dosage adjustments.

SPORTIF V was a randomized double-blind trial comparing ximelagatran with coumadin in patients with atrial fibrillation.

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The study was designed as a "non-inferiority" trial, that is, it was designed to show that ximelagatran was no worse than coumandin. Blood was drawn frequently and "dosage adjustments" were ostensibly made in both groups, so that patients and doctors would not know which drug they were really receiving. Coumadin dosages were, in fact, controlled with extreme care in this study to assure optimal therapy.
Overall, 3922 patients were randomized to receive either coumadin or ximelagatran in this trial. At the end of the study, there was no difference in the risk of stroke between coumadin and ximelagatran - that is, ximelagatran was at least as effective as coumadin. While the risk of major bleeding complications was low in both groups and not significantly different between groups, the overall risk of bleeding complications was significantly lower with ximelagatran.

One question remains for ximelagatran - elevations in liver enzymes were seen in 6% of patients taking the new drug. Typically, this elevation in enzymes was seen over the first 6 months of treatment, and then normalized even if the drug was continued. The significance of this transient liver enzyme elevation is thought to be minor, but more study will need to be done.

Overall, it appears that ximelagatran will be a major advance in the treatment of clotting disorders, as it seems to be as effective as coumadin while avoiding the cumbersome steps, to both the patient and the doctor, required to use coumadin safely. AstraZeneca, makers of ximelagatran, is hoping to have FDA approval to market this drug in 2004.

Updated: November 17, 2003Important disclaimer information about this About site.
Suggested Reading
Links related to atrial fibrillation
Preventing stroke in atrial fibrillation
Related Articles
ximelagatran - a substitute for coumadin?
Ximelagatran Washes Out
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Patients receiving Coumadin® also need to be very careful about their diet and activities to prevent problems while taking the medication. The levels of the drug in the body can be affected by the amount of vitamin K in your diet. Foods high in vitamin K include: leafy green vegetables, green teas, as well as pork and beef liver. Patients should avoid large amounts of alfalfa, broccoli, asparagus, Brussels sprouts, cauliflower, cabbage, kale, spinach, watercress, lettuce and turnip greens. You can still eat these items, but eat the same amount regularly. For example, don’t eat a plate-full of turnips every day for a week and then decide to stop eating them the next week. Keep the relatively the same diet foods high in vitamin K. Large changes in the amount you eat can cause problems with your treatment.

Also, since Coumadin® is a fairly strong blood thinner, you have a chance of bleeding more than usual with common cut, scrapes and falls. Use caution walking and with activities that place you at risk to fall or get hurt. Be careful while shaving, because a common cut may take longer to stop bleeding. Watch for blood in the urine, in the stools, or around the gums when eating and brushing teeth; bleeding from the nose; or bruising easily. If you notice abnormal or excessive bleeding, let your pharmacist and doctor know, and talk with them before you change or take any new medicines. Lastly, get an identification bracelet or necklace to let people, doctors and dentist know you are taking Coumadin®.

It`s oke to send a private message but I want other people to read this to, maybe it can help them, so I will put your message and mine on the forum I hope you don`t mind,

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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Bericht door Corrij (therapeut) » vr nov 02, 2007 11:49 am

hi Verona,

Hi Verona,

[Effect of Coenzyme Q10 and Ginkgo biloba on warfarin dosage in patients on long-term warfarin treatment. A randomized, double-blind, placebo-controlled cross-over trial][Article in Danish]


Engelsen J, Nielsen JD, Hansen KF.
Klinisk Biokemisk Afdeling, Koagulationslaboratoriet, Amtssygehuset i Gentofte, Niels Andersens Vej 165, DK-2900 Hellerup. jeng@dadlnet.dk

INTRODUCTION: A few case-stories claim that the anti-oxidant Coenzyme Q10 and possibly also Ginkgo biloba interact with warfarin treatment. A decreased response to warfarin in the Coenzyme Q10 cases and an increased response in the Ginkgo biloba case have been described. MATERIAL AND METHODS: Twenty-four outpatients on stable, long-term warfarin treatment were included in a randomised, double blind, placebo-controlled crossover trial. Coenzyme Q10 100 mg daily, Ginkgo-Biloba 100 mg daily and placebo were given in random order over treatment periods of four weeks, each followed by a two week wash out period. The international normalized ratio (INR) INR was kept between 2.0 and 4.0 by appropriate adjustment of the warfarin dosage. RESULTS: Fourteen women and ten men, median ages 64.5 years (33-79) were included. Three patients withdrew from the study for personal reasons. The INR was stable during all treatment periods. The geometric mean dosage of warfarin did not change during the treatment periods: Ginkgo biloba 36.7 mg/week (95% confidence interval: 29.2-46.0); CoQ10 36.5 mg/week (29.1-45.8); placebo 36.0 mg/week (28.6-45.1). CONCLUSION: The study indicated that Coenzyme Q10 and Ginkgo biloba do not influence the clinical effect of warfarin.

PMID: 12772396 [PubMed - indexed for MEDLINE]


CoenzymeQ10
benefit of CoenzymeQ10, coenzymeq10 side effects

Coenzyme Q10 is a naturally occurring nutrient found in each cell of the body. Coenzyme Q10 was first identified by University of Wisconsin researchers in 1957. Coenzyme Q10 is found in foods, particularly in fish and meats. In addition to playing a significant role in the energy system of each of our cells, CoQ10 is a good antioxidant. Many who take Coenzyme Q10 notice that this nutrient provides energy and mental clarity. For more coenzyme q10 information.

For which conditions is Coenzyme Q10 helpful?
Studies with Coenzyme Q10 have mostly focused on its role in improving certain types of cardiovascular diseases, including congestive heart failure and hypertension. However, Coenzyme Q10 may benefit those with diabetes and Parkinson's disease.

How does Coenzyme Q10 work?
Each cell in the body needs a source of energy to survive, so cells break down sugars, fats, and amino acids to make energy. Small enclosures within cells that make this energy are called mitochondria. Coenzyme Q10 exists naturally in our mitochondria and carries electrons involved in energy metabolism. Coenzyme Q10 is essential in the production of adenosine triphosphate (ATP), the basic energy molecule of each cell.
In the bloodstream, Coenzyme Q10 is mainly transported by lipoproteins such as LDL (low-density lipoprotein) and HDL (high-density lipoprotein). It is thought that Coenzyme Q10 is one of the first antioxidants to be depleted when LDL is subjected to oxidation. Hence, CoQ10 is an important nutrient that prevents the oxidation of lipoproteins, thus potentially reducing the risk of arteries from forming plaques and getting damaged.
In healthy individuals, Coenzyme Q10 is found in high concentrations in the heart, kidneys, and liver.

CoQ10 effect on blood pressure and EKG
In young, healthy adults, one dose of CoQ10 does not have any effect on ECG variables and exhibits only mild and transient effect on systolic blood pressure.

Benefits of Coenzyme Q10
Diabetes: Coenzyme Q10 may be beneficial in diabetics. It helps improve the function of endothelial cells lining blood vessels and may slightly help with blood sugar control.

Heart Attacks: In a small trial of patients with recent myocardial infarction, Coenzyme Q10--used in addition to aspirin and cholesterol-lowering drugs--decreased the likelihood of further cardiac events for at least one year after the heart attack. The dosage of CoQ10 used in the study was 60 mg twice daily.

Heart Failure: One study shows significant improvement in functional status, clinical symptoms, and quality of life in end stage heart failure patients who were placed on Coenzyme Q10 (see bottom of page).

Hypertension: Coenzyme Q10 may help lower blood pressure by a small amount.

Coenzyme Q10 antioxidant potential
Enrichment of coenzyme Q10 in plasma and blood cells: defense against oxidative damage.
Int J Biol Sci. 2007 Apr 5;3(4):257-62. Vestische Kinderklinik Datteln, University Witten-Herdecke, Datteln, Germany.
Coenzyme Q10 concentration in blood cells was analyzed and compared to plasma concentration before, during, and after Coenzyme Q10 (3 mg/kg/day) supplementation to human probands. Lymphocyte DNA 8-hydroxydeoxy-guanosine (8-OHdG), a marker of oxidative stress, was analyzed by Comet assay. Subjects supplemented with Coenzyme Q10 showed a distinct response in plasma concentrations after 14 and 28 days. Plasma levels returned to baseline values 12 weeks after treatment stopped. During CoQ10 supplementation, delayed formation of 8-OHdG in lymphocyte DNA was observed; this effect was long-lasting and could be observed even 12 weeks after supplementation stopped. Intracellular enrichment may support anti-oxidative defense mechanisms.

Coenzyme Q10 and Drug interactions
The administration of Coenzyme Q10 and warfarin does not significantly affect the anticoagulant effect of warfarin in rats. A Human trial shows Co Q10 and Ginkgo biloba do not influence the clinical effect of warfarin.

Coenzyme Q10 Side Effects and Cautions
High dosages of Coenzyme Q10 can induce restlessness and insomnia.

Coenzyme Q10 Recommendations
Coenzyme Q10 is beneficial in cardiovascular conditions and this nutrient will likely be found to play some positive role in cognitive or neurodegenerative disorders, but more studies are needed.
It would seem appropriate to supplement with this nutrient as part of a long-term health regimen, particularly for those with cardiovascular conditions. Long-term therapy with 10 to 30 mg seems to be a reasonable option for many individuals.

Coenzyme Q10 Research Update
Coenzyme Q10 in patients with end-stage heart failure awaiting cardiac transplantation: a randomized, placebo-controlled study.
Berman M, Erman A, Ben-Gal T, Heart-Lung Transplant Unit, Rabin Medical Center, Beilinson Campus, Potah Tikva, Israel.
Clin Cardiol. 2004 May;27(5):295-9.
The number of patients awaiting heart transplantation is increasing in proportion to the waiting period for a donor. Studies have shown that coenzyme Q10 (CoQ10) has a beneficial effect on patients with heart failure. The purpose of the present double-blind, placebo-controlled, randomized study was to assess the effect of coenzyme Q10 on patients with end-stage heart failure and to determine if coenzyme Q10 can improve the pharmacological bridge to heart transplantation. A prospective double-blind design was used. Thirty-two patients with end-stage heart failure awaiting heart transplantation were randomly allocated to receive either 60 mg U/day of Ultrasome--coenzyme Q10 (special preparation to increase intestinal absorption) or placebo for 3 months. All patients continued their regular medication regimen. Assessments included anamnesis with an extended questionnaire based partially on the Minnesota Living with Heart Failure Questionnaire, 6-min walk test, blood tests for atrial natriuretic factor (ANF) and tumor necrosis factor (TNF), and echocardiography. RESULTS: Twenty-seven patients completed the study. The study group showed significant improvement in the 6-min walk test and a decrease in dyspnea, New York Heart Association (NYHA) classification, nocturia, and fatigue. No significant changes were noted after 3 months of treatment in echocardiography parameters (dimensions and contractility of cardiac chambers) or ANF and TNF blood levels. CONCLUSIONS: The administration of coenzyme Q10 to heart transplant candidates led to a significant improvement in functional status, clinical symptoms, and quality of life. However, there were no objective changes in echo measurements or ANF and TNF blood levels. Coenzyme Q10 may serve as an optional addition to the pharmacologic armamentarium of patients with end-stage heart failure. The apparent discrepancy between significant clinical improvement and unchanged cardiac status requires further investigation.

Serum Coenzyme Q10 concentrations in healthy men supplemented with 30 mg or 100 mg coenzyme Q10 for two months in a randomised controlled study.
Zita C. Clinic of Geographic Medicine, Prague, Czech Republic.
Serum coenzyme Q10 (Q10) concentrations were evaluated in healthy male volunteers supplemented with 30 mg or 100 mg Q10 or placebo as a single daily dose for two months in a randomised, double-blind, placebo-controlled study. Median baseline serum Q10 concentration in 99 men was 1.26 mg/l (10%, 90% fractiles: 0.82, 1.83). Baseline serum Q10 concentration did not depend on age, while borderline significant positive associations were found for body weight and smoking 1-10 cigarettes/d. Supplementation with 30 mg or 100 mg coenzyme Q10 resulted in median increases in serum coenzyme Q10 concentration of 0.55 mg/l and 1.36 mg/l, respectively, compared with a median decrease of 0.23 mg/l with placebo. The changes in the Q10 groups were significantly different from that in the placebo group, and the increase in the 100 mg coenzyme Q10 group was significantly greater than that in the 30 mg Q10 group. The change in serum coenzyme Q10 concentration in the Q10 groups did not depend on baseline serum coenzyme Q10 concentration, age, or body weight.

Effect of coenzyme Q10 on risk of atherosclerosis in patients with recent myocardial infarction.
Singh RB,. Mol Cell Biochem. 2003 Apr;246(1-2):75-82.
Medical Hospital and Research Centre, Moradabad, India
In a randomized, double-blind, controlled trial, the effects of oral treatment with coenzyme Q10 (CoQ10, 120 mg/day), a bioenergetic and antioxidant cytoprotective agent, were compared for 1 year, on the risk factors of atherosclerosis, in 73 (coenzyme Q10, group A) and 71 (B vitamin group B) patients after acute myocardial infarction (AMI). After 1 year, total cardiac events (24.6 vs. 45.0%) including non-fatal infarction (13.7 vs. 25.3%, p < 0.05) and cardiac deaths were significantly lower in the intervention group compared to control group. The extent of cardiac disease, elevation in cardiac enzymes, left ventricular enlargement, previous coronary artery disease and elapsed time from symptom onset to infarction at entry to study showed no significant differences between the two groups. Plasma level of vitamin E and high density lipoprotein cholesterol showed significant (p < 0.05) increase whereas thiobarbituric acid reactive substances, malondialdehyde and diene conjugates showed significant reduction respectively in the coenzyme Q10 group compared to control group. Approximately half of the patients in each group (n = 36 vs. 31) were receiving lovastatin (10 mg/day) and both groups had a significant reduction in total and low density lipoprotein cholesterol compared to baseline levels. It is possible that treatment with coenzyme Q10 in patients with recent MI may be beneficial in patients with high risk of atherothrombosis, despite optimal lipid lowering therapy during a follow-up of 1 year. Adverse effect of treatments showed that fatigue (40.8 vs. 6.8%, p < 0.01) was more common in the control group than coenzyme Q10 group.back to index yohimbe bark

Coenzyme Q10 research, coenzyme q10 side effects, coenzyme q10, benefits coenzymeq10

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

shane
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Bericht door shane » vr nov 02, 2007 5:08 pm

Corrij,

The cardiologist did say that there was an alternative but it is bad for the liver. I know this hasn't been absolutely proven, but he is unable to prescribe something else. The CoQ10 that Shane was taking is a really absorbing gel tab that a vitamin manuafacturer made for him to take. My husband works for a vitamin company and one of the owners made this for my son. The owner also has cardiomyopathy and has had it for years and swears by the CoQ10 helping.

Should we wait and see how Shane does on the Coumadin without the CoQ10 and then slowly bring it back later? He is going back in for another INR test in a week. Maybe we could try Douglas's brand, he seems to be doing fine with the Coumadin and CoQ10.

Thanks so much!
Verona

Corrij (therapeut)
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Bericht door Corrij (therapeut) » vr nov 02, 2007 5:38 pm

Hi Verona,

Listen to your mothers heart, it never lies.
If it don`t feels comfortable, then wait.

The brand doesn`t make a big difference, Shane is very sick, a EF of 15% isn`t much, so what the complete protocol concerns, how rather how better.

Maybe its a idea to give him a smaller amount of Q10 to start with, for example 30 mg a a day.

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

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