Cariomyopathy, Thiamin Deficiency, Sleep Apnea...

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Kevin Guidry
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Cariomyopathy, Thiamin Deficiency, Sleep Apnea...

Bericht door Kevin Guidry » wo nov 15, 2006 7:29 pm

Hi,

I've been reading posts on your website forum regarding CHF. I am from the USA. More specifically I'm from Atlanta, GA. I am 43 and soon to turn 44 years old. I am willing to work with you using the forum however I can only speak English. I looked for an entry portal to your English forum however I could not find it. Thank you for intervening. I would like to try a supplement protocal in an effort to help my situation.

Since diagnosis I have changed my lifestyle greatly. This includes Regular Excercise, No Alchohol Consumption and other things listed below. I've been relatively Asymptomatic with the exception of fatique. This condition was discovered as the result of a knee operation. The doctor performed an EKG at surgery time and it was abnormal. Once recovered from the surgery I went to a Cardiologist to investigate the EKG results. The doctor didn't detect an fluid rentention however, Apparently I was retaining some fluid After I started on the treatment I lost 10 pounds almost immediately. Otherwise there was very little to suggest that I even had a problem.

After reading the posts, I went to the local GNC (General Nutrition Corporation) and purchsed several supplements that I read about on the forum. More specifically:

MSM 1000mg capsules taking 3x's day
Chromium Picolinate 200mg capsules taking 1x day

Additionally I purchased the following but haven't taken any of them yet:

Taurine 500mg capsules
L-Carnitine 250mg capsules (Is this the same thing as Acetyl
L-Carnitine?)

I am currently taking (Started before learning about your website:

C0Q10 100mg capsules 2x day
B-12 500m 2x day
Fish Oil 1000mg 3x day (Omega 3)
B-1 100mg 3x day

The doctor has me on the following:

Carvedilol (Coreg) 6.25mg 2x day (Heart Medicine - Beta Blocker)
Benicar 20mg 1x day (Blood Pressure Medicine)

Do I need to make any addtional purchases to be prepared for your protocal?

Here are the responses to your questions:

>You are diagnosed with?
Ideopathic Non-Ischemic Dilated Cardiomyopathy

>Current Condition
A problem was discovered approximately 9 months ago during an EKG as part of Orthroscopic Surgery. (Left Budle Branch Block) I saw a Cardiologist 2 months later who diagnosed this condition. Relatively Asympomatic with the exception of fatique. Class I of IV.

>Ejection Fraction
Approximately 30%, has recently been retested (Echocardiogram) and hasn't changed since the original diagnosis 6 months ago.

>Cause of my disease
Unknown - determined to be Ideopathic however several things have been diagnosed since:
Thiman (Viatmin B1) deficiency. 2 blood tests = 1st was Undetecable level & 2nd was Deficient Level barely registered on the scale. Currently taking replacement therapy.
Low Vitamin B12 - Currently taking replacement therapy.
Sleep Apnea currenlty being treated with CPAP @ 8lbs pressure
Low Testosterone Level a year ago and now in the low side of normal - not taking any therapy for this

>Blood Pressure
High Blood Pressure at varying levels. ie: 200/100, 160/88, 170/90 Currently being treated with Benicar 20mg 1x and Blood Pressure is now ok. In fact, I excercise 2x day and my blood pressure is now low. ie: 111/67 I may ask my Cardiologist if I can reduce or eliminate the meds for high blood pressure.

>Possible Nutritional Restrictions (Salt, Water, Ect.)
Caridiologist has placed on no restrctions other than salt limit of no more than 2000mg per day. I find that it helps my energy level to place myself on a more strict low-sodium diet.

>Are you using diruetics
No

>Are you using Beta Blockers like Sotalol
Yes, Carvedilol (Coreg) 6.25mg 2x day. Due to my low heart rate this is the maximum dosage I can tolerate, according to my Cardiologist.

>Are you frequently tired
Sometimes however I've noticed much improvement when I excercise 2x day. Walk @ 4.7 mph for 1 hour each event. Also, after reading this forum I purchased the MSM 1000mg 3x day & Chromium 200mg 1x day. I've been taking this for the past 3 days and have noticed additional improvement. Now, I'm almost normal as it relates to tiredness.

>Do you use lots of sugar
Yes, I LOVE sweets however I still try to eat sweets in moderation to maintain and loose weight.

>Can you skip a meal or eat three hours later without a problem
Yes


Thank you for providing this service. I'm looking forward to this.

Kevin
Regards,

Kevin

Corrij (therapeut)
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Bericht door Corrij (therapeut) » wo nov 15, 2006 10:48 pm

Hello Kevin,

At first a very warm welcome on this forum.
Youre taking now the chromium and the MSM?
No diarrea or headache?
L-carnitine is not the same as L-acetyl-carnitine,
Change l-carnitine --> l-acetyl-carnitine the next time, keep the same dosage.

The Q 10 youre taking is oke but I want you to ask to stop taking the fish oil,the B1 and the B12,they are not a part of the protocol.I can understand why you choose them,there not bad or wrong,but simply not the right ones now :wink:

The other supplements we added in a later stage,in a few weeks,not to fast
Let your body get used to the supplements.
If you have any questions,please do not hesitate,

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

Kevin Guidry
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Lid geworden op: wo nov 15, 2006 12:47 pm

Bericht door Kevin Guidry » wo nov 15, 2006 11:19 pm

Corrij,

Thank you for your prompt reply. I'll address your questions.

>Youre taking now the chromium and the MSM?

Yes. MSM 1000mg 3x daily and Chromium 200mg 1x daily.

>No diarrea or headache?

Correct. There is not diarrea or headaches.


Corrij, I'm ok with discontinuing the B12 supplement. Additionallyk, I'll gladly stop taking the fish oil (Omega 3) supplement. It's one extra expense and the pills are way large.

I must admit that I'm a bit concerned about discontinuing the Thiamin (Vitamin B1) replacement. I've done a lot of reading and have learned that a Thiamin Defficiency can cause a Cardiomyopathy. (If so, my condition would be Wet Beriberi not Soshin Beriberi) Just for the record, my Cardiologist thinks that my Cardiomyopathy is unrelated to the Tiamin Defficiency. Within the next 6 months we should know if there is any relationship assuming I continue the Thiamin replacement.

Please know that my Thiamin level was undetectable the first time the blood test was performed. The second test, while it detected some Thiamin, was still considerably lower than the lowest recommended amount. Apparently my body is not properly converting carbs to Thiamin or my body is not absorbing it. I know that this is very unusual in this century. In fact, my doctor stated that I was the first in his career with an undetectable/deficient Thiamin level of genetic origin.

Kevin
Regards,

Kevin

Corrij (therapeut)
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Bericht door Corrij (therapeut) » do nov 16, 2006 12:06 pm

Hi Kevin,

I know that it is always difficult to change something where you symphatise yourself well at.
If you feeling better taking 300 mg B1 a day,please continue.

I can understand why you take vitamin B1,but it is much better to attempt to do this in a high dosed multivitamin and take two of them every day.
If you take one or two vitamins in a high amounts,their functioning is not optimum,vitamins reinforce each other`s function.
If you are a little frightened give up B1,you can take one a day and complete the rest with two multivitamins.

Is this a solution for you?

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

Kevin Guidry
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Berichten: 39
Lid geworden op: wo nov 15, 2006 12:47 pm

Bericht door Kevin Guidry » do nov 16, 2006 5:10 pm

Corrij,

I was taking a B complex vitamin when I first started the replacement. When we re-tested to make sure that it was working my B6 level was high. So I reduced it to merely the specific deficiencies. I will purchase a multi-vitamin and take it in conjunction with the B1 as you suggest.

B1 1x day
Mutlti-Vitamin 1-2x day

Soon I plan to visit with the doctor and re-take the blood test. I'm not certian that I need to take 300mg a day. The thought was that if I had an abosorbtion problem at this dose I would still absorb enough to balance me.
Regards,

Kevin

Kevin Guidry
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Bericht door Kevin Guidry » do nov 16, 2006 5:11 pm

Oh, one other thing... Will the vitamin replacement therapy negatively affect your protocal?
Regards,

Kevin

Kevin Guidry
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Bericht door Kevin Guidry » do nov 16, 2006 11:52 pm

I'm reading a lot of this information provided by Willie regarding Carnitine, CoQ10, etc. There are stated levels or Carnitine that is considered normal/below normal. I'm unsure if my Cardiologist has run any test relative to these levels. Is it normal for the Cardiologist to do so? Should I go to my Family Doctor and ask him to run the blood work? If so, what tests should I request?

Kevin
Regards,

Kevin

Corrij (therapeut)
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Bericht door Corrij (therapeut) » vr nov 17, 2006 9:36 am

Hello Kevin,

No not at all,you can take your vitamins,it will not effect the protocol.
In the Netherlands the cardiologist don`t check these levels,only the orthomoleculaire doctors.
You can ask your family doctor if its possible to check these levels,but it is not that important at this moment.

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

Kevin Guidry
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Berichten: 39
Lid geworden op: wo nov 15, 2006 12:47 pm

Bericht door Kevin Guidry » do nov 23, 2006 1:11 am

Corrij,

I'm noticing that I'm experiencing an very increased quantity of palpitations. It may be the MSM or Chromium. I've always has some palpitations however the incidence of them have increased 15x's or greater. What are your thoughts?

Also, what does your title mean? What is a therapeut?

Thanks.
Regards,

Kevin

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Bericht door Corrij (therapeut) » vr nov 24, 2006 12:05 pm

Hello Kevin,

It can`t be the chromium,but the MSM could have been the cause.
Do you`ve build up the dosage MSM?
For example a few days 500 mg MSM and so further?
There could be more reasons,is your bloodpressure still the same?Have you had more stress the last few weeks?
What you can do is to stop the MSM and see what happens.After a week or two try the MSM again,and build it up very slowly.

Can you tell me why you`re asking what therapeut means now, and not when you started the protocol?
I `ve could be wrong but I have a feeling that you have doubt to my recommendations?

I am following a two years professional course to become a orthomolecular nutritional therapist(examination succeeded)and orthomolecular specialist on the Social Acedemie for Medicine,Homeopathy&Orthomolecular Nutrition in Breukelen,Holland.
I also successfully followed courses in Detoxification&Drianing and Nutrition&Dietary Advice.

I believe that therapist means the same in America as it does in Holland.

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

Kevin Guidry
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Berichten: 39
Lid geworden op: wo nov 15, 2006 12:47 pm

Bericht door Kevin Guidry » do nov 30, 2006 3:21 am

Hey Corrij,

Thanks for your thoughts. I started taking the Chromium at night before bedtime and the palpitations seem to have returned to normal. According to your comments I suspect that this change had very little to do with it. Regarding stress, I went home for the Thanksgiving holidays. The anticipation is always stressful. (If you knew my Mom you'd understand. 8)) Anyway, now I seem to be doing fine.

Regarding the MSM, my local GNC only had 1000mg capsules so my dose was elevated quite rapidly. Within 3 days I was up to 1000mg 3x's a day. I've been taking this dose for well over a week, perhaps two weeks.

Regarding your role, my friends and family inquire about my progress from time to time. Recently, I was trying to explain that I'm beginning a supplemental protocal. When asked, I could not explain the relationship between you, Willie, and this protocal. It seems to be Willie's protocal yet under your direction. It is my understanding that Willie is relative to a scientist of sorts and, through his research, developed this approach. I wasn't quite sure how you fit in but thought that perhaps "therapeut" might mean doctor or similiar. I seem to recall that somewhere in all of the writing in the website, the relationships were defined. Sometimes my comprehension is terrible so I thought that I would just ask.

Regarding any doubts; I have none. Up front, I asked my Cardiologist and he confirmed that all of these supplements are safe. (Just for the record, I'm medically challenged when it comes to all of this stuff, but I'm learning.) In my review of this forum and website, (And I've read it all the way through.) I feel a sense of security and trust in your sincerity and that of Willie's; I'm a great judge of character. Please know that I engage this program with a lot of hope and the knowlege of all potential outcomes; it may or may not work for me.

Corrij, under no circumstances do I wish to offend you, Willie, or anyone else that dedicates their time. Your willingness to take your time in an effort to help those you don't even know is beyond reproach! You have to be INCREDIBLE HUMAN BEINGS! I am convinced that your efforts help people, I can only hope to be one of the fortunate.

When should I begin the rest of the protocal?
Regards,

Kevin

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Bericht door Corrij (therapeut) » zo dec 03, 2006 10:09 pm

Hello Kevin,

I thought mother-in-laws were the worse?
In the Netherlands the MSM tablets are sold in 1000 mg as well and most people break them in half, it's not ideal but it is sensible to build it up slowly.
Willy is the writer of all the articles and protocols, this because of his own health problems including cardiomyopathy.
The site is enormous, I think the biggest one in Europe in the orthomolecular field, and it offers protocols for heart failure, diabetes and a lot of other diseases, plus it has a general topic where everyone with health problems can ask questions.
Willy can't do that by himself and that's why he has some therapists who help him, and I'm one of them. All the therapists have had a good education.

You can always ask questions and if you have doubts about something, mention them so we can react to that which will help our mutual understanding. Sometimes it is for me quite difficult to make things clear in English. Often I'd want to explain things more in detail but I can't find the right words in English which is sometimes frustrating. I apologize for that.

By the way, thanks for your kind words but we are not that great. We have an enthusiasm which comes from the fact that so many people are being let down by regular physicians in spite of there being numbers of possibilities to help. With the heart failure protocol we've booked great results and we don't want to keep that from anyone.
Before we continue with the protocol I want you to feel good and be free of extra.arrhythmia.
Is it ok if we add some extra supplements in about 8 days time?

Kind regards,

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

Kevin Guidry
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Berichten: 39
Lid geworden op: wo nov 15, 2006 12:47 pm

Bericht door Kevin Guidry » ma dec 04, 2006 9:07 pm

Hey Corrij,

Thanks for the response. I'll check back in a week or so about starting the rest of the protocal. The arythmias have almost stopped. I experience one every now and then however lately it's been just once or twice a day. In a few weeks I'll be returning home for the Christmas Holiday... let's see if the arythmias return... Although I'm single, I'd bet that my sisters-in-law would support your comment about Mother-in-Laws. :)

I noticed that the website forum was quite large by way of user group selections. All are fortunate to have this resource. Just for the record, when I mentioned that I read it all I was referring to the English version. More specifically I was referring to the Cardiomyopathy Treatment Forum and the general website. (I suppose the general website is Willy's website)

I look forward to beginning the next phase.
Regards,

Kevin

Kevin Guidry
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Lid geworden op: wo nov 15, 2006 12:47 pm

Bericht door Kevin Guidry » do dec 14, 2006 12:42 am

Hey Corrij,

I hope this finds you doing well. The last time we communicated you thought that I might begin another phase of the protocal at this time. Currently I'm taking the MSM 1000mg 3x's daily and Chromium 200mg 1x daily at bedtime.

What's the next step?
Regards,

Kevin

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Bericht door Corrij (therapeut) » do dec 14, 2006 11:54 am

Hi Kevin,

Oke here we going :D

Q10 2 x 100 mg a day
L-Carnitine 3 x 500 mg a day
Taurine 3 x 500 mg a day
Vitamine C 3 x 1000 mg a day

http://www.candida-fibromyalgie-hypogly ... php?t=3630

http://www.candida-fibromyalgie-hypogly ... php?t=3627

http://www.candida-fibromyalgie-hypogly ... php?t=3611

I just wanted to say that it would be best to take the carnitine and the taurine
separately on a empty stomach.


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.

We added some more supplements in a few week :wink:


If you still have any questions don`t hesitate to ask,

regards,Corrij


coming your way
with a note of good cheer
for a Merry Cristmas
and a Happy New Year :wink:
Those who do not have enough time for good health,
will not have good health for enough time.

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