Re: New Member Intro.

Posted January 20, 2002 · January 20, 2002

Welcome Don,

I too work on family history, Genealogy, I have traced

many of my family members back before the

Revolutionary War. I have found names that may or may

not be ancestors in the early colonization of New

England but can not make deffinate indentification of

them.

I have been able to trace this CMT back to 1823 and if

I could find out which parent of my great great

grandfather was " crippled up " I most likely could go

further back.

I had been the 'victim' of misinformation on CMT all

my life. I have just found out that I am NOT only a

carrier of the gene but afflicted with it too.

Welcome to this group. They are all wonderful, warm,

understanding and loving. To quote Sue Horder-Mason

from the UK " Never stop Questioning " (may not have

gotten that down verbatem but close.

Susie McFarland Lemin

--- Gretchen Glick <liliwigg@...> wrote:

> Dear Group, please join me in welcoming Don to

> . Below is his

> introduction. ~ G

>

--------------------------------------------------------------------------------\

-

>

> Just a short bio of me. I was a university teacher

> for 21 years and a

> therapuetic recreation specialist for 10 years. I

> retired in 1989 as

> they thought I had Parkinson. I have lived in

> Minnesota,California,Oregon,Iowa and currently in my

> homestate of

> Kansas. I do family history. I have been a

> volunteear for many years.

> At my last Dr. appointment,they are thinking I may

> have CMT and not

> Parkinson. I find using email is a great way to keep

> in contact with

> family and friends also doing research on various

> topics.

> Enough Don Lindley

>

__________________________________________________

Posted January 20, 2002 · January 20, 2002

> Dear Group, please join me in welcoming Don to . Below is his

> introduction. ~ G

>

> -------------------------------------------------------------------

--------------

>

> Hello Don Lindley

Welcome!

Rocky

Posted January 20, 2002 · January 20, 2002

Welcome Don, I have a feeling you will fit right into this group.

Good luck,

Dave

> Dear Group, please join me in welcoming Don to . Below is his

> introduction. ~ G

>

--------------------------------------------------------------------------------\

-

>

> Just a short bio of me. I was a university teacher for 21 years and a

> therapuetic recreation specialist for 10 years. I retired in 1989 as

> they thought I had Parkinson. I have lived in

> Minnesota,California,Oregon,Iowa and currently in my homestate of

> Kansas. I do family history. I have been a volunteear for many years.

> At my last Dr. appointment,they are thinking I may have CMT and not

> Parkinson. I find using email is a great way to keep in contact with

> family and friends also doing research on various topics.

> Enough Don Lindley

Posted May 12, 2011 · May 12, 2011

>

> Hello all. I'm Marenda, 46 single, no kids and I have rheumatoid arthritis

(diagnosed at 35) with related lupus/lungs problems and osteoarthritis. My

Rheumatologist also thinks I might have fibromyalgia. My hands are starting to

deform and I am worried my feet might be next. The only meds I am taking is

methotrexate and prednisone which isn't helping the pain and deformity

obviously.

>

> I just purchase Dr. Bruce Fife book " The New Arthritis Cure " and I hope it

improves my condition. I fit has helped anyone I would like to hear from you.

Thank you.

>

> Marenda

>

> P.S. Was that too much personal info? I'm desperate for relief.

>

Marenda,

My heart goes out to you. When I was your age I had everything you do. My

recommendation to you is to try a natural approach. I too was on predinisone,

also antibiotics which is pure poison to both your liver and immune system. You

need a healthy liver and immune system to heal. I would recommend you find a

good Naturopath or Holistic Dr. I did several cleanses, first was a serious

Candida Cleanse, and you must go off all sugars and starchy carbs, (except

complex carbs) to get the fungus out of your system. I also had breast implants

I had removed. It wasn't until I did those things I began to heal. Medical Dr's

almost killed me. This is not a fast process, but it has certainly saved my

life, and given me a pain free life. I'm almost 60 now, and am far healthier

than I was from 35 to 50. No arthritis, or fibro at all. Natural, organic,

whole, foods, exercise, and proper supplementation, with quality supplements,

have turned my life around. The exercise I still have to force myself to

do..but it makes such a huge difference in my labs I have to do it. All I do is

30 mins a day on a rebounder, or walk, weather permitting. Also, I want to add,

I use only Tropical Traditions Organic Coconut oil for cooking. I also take a

seaweed supplement,(these have drastically helped my thyroid. I'm on Armour

Thyroid, but my dose has dropped drastically. I do use a bit of olive oil for

salads.

I realise I'm very blessed to be able to do these things. We have health

insurance but I rarely use it. It won'd pay for Naturopath or Holistic Dr.'s or

most of the cures, unless you can find one that is also and MD. When we retire

and have to go on Medicare it will become a problem to pay for this way of life.

I'm so dreading that!

Hope this is of some help...there is hope, but it wasn't with medical Dr.'s or

drugs in my case. It took a holistic dr., about a year, and being completely

loyal to proper diet, exercise, and supplementation, to really begin to feel

somewhat normal again. It's been all uphill ever since. Now, it's just natural

for me to do all things healthy. I even prefer the food now. It's not easy in

the beginning, but take it from me...it's completely doable, and sooooo worth

the effort. Peggy

Posted May 12, 2011 · May 12, 2011

Hey Marenda. Welcome.

I run part-time an informal local wellness co-op club. Some of the

members,suffering from fms, cfs or arthritis have commented that

have experienced less inflammation and increased energy levels.

Now, I'm not sure if this could be attributed to the coconut oil

exclusively.

Most members, besides extra virgin coconut oil, purchase and use

certified undenatured whey powder, lab grade D.M.S.O., Magnesium

Chloride flakes. I also offer a variety of different preventative and

holistic wellness services including Energy transfer, Reiki, EFT, and Energy

Spiritual Psychotherapy.

I'm working on combining D.M.S.O. with anti-imflammatory agents,

that I think offers great promise. Jon Barron, as I found when I was

researching, has a similar formula for instant pain relief-not a cure-

that unfortunately comes with a high price tag, to my humble opinion.

I'll post my findings in the fall, when I'll have some results and feedback

from my members.

You can do research regarding the above or post again with any questions

you may have.

On a hunch just before I finish, research T.M.F. (tumor necrosis factor)

that starts with a damaging process in the body- " glycation " .

It may be pertinent to your condition.

Blessings,

Nick

On Thu, May 12, 2011 at 11:53 AM, Marenda <marendaw@...> wrote:

>

> Hello all. I'm Marenda, 46 single, no kids and I have rheumatoid arthritis

> (diagnosed at 35) with related lupus/lungs problems and osteoarthritis. My

> Rheumatologist also thinks I might have fibromyalgia. My hands are starting

> to deform and I am worried my feet might be next. The only meds I am taking

> is methotrexate and prednisone which isn't helping the pain and deformity

> obviously.

>

> I just purchase Dr. Bruce Fife book " The New Arthritis Cure " and I hope it

> improves my condition. I fit has helped anyone I would like to hear from

> you. Thank you.

>

> Marenda

>

> P.S. Was that too much personal info? I'm desperate for relief.

>

Posted May 13, 2011 · May 13, 2011

Hi Marenda;

Your diseases are in the group of " oxidative stress " diseases listed in the

glutathione references. Data on how glutathione is involved in reduction of the

oxidative stress in all these disease:

http://members.shaw.ca/duncancrow/glutathione-references.html

A low-carb diet with added inulin and inulin vegetables, undenatured whey, and

selenium will figure prominently in your cure, as it reduces toxin load and

increases glutathione manufacture. As you progress and get more involved with

removing the polyunsaturated oils from the diet you'll learn which other dietary

can help balance your fatty acids.

Cod-liver oil or DHA oil for example will help with the inflammation; this is

absent from coconut oil. Coconut oil itself won't cure a disease related to this

fatty acid insufficiency because it contains none. VCO actually can and has made

fatty acid deficiencies seem worse. VCO and especially some of its derivatives

such as capric and caprylic acids, the MCT oils used in most of the research,

may give you more energy.

The toxin-based oxidative " diseases " are seriously aggravated by bowel dysbiosis

(bad bowel ecology), a main source of the oxidative stress " . The good fats in

coconut oil will help a bad bowel ecology by subduing the numbers of unwanted

oil-enveloped organisms in the first several feet of upper GI tract. Other

compounds that kill germs that you will become aware of as you visit this group

are often used as well. Inulin is a specific food for the probiotics that need

to be fed in order to better control the bad bowel ecology:

http://members.shaw.ca/duncancrow/inulin_prebiotic_probiotic.html

Mineral supplements have to be increased because of the bowel malabsorption of

nutrients; for example zinc is needed to make stomach acid, and stomach acidity

is used to absorb zinc, but zinc is malabsorbed in bowel dysbiosis. So one

increases stomach acidity and also bowel acidity in order to better absorb the

zinc and other alkaline mineral supplements, at leat until the bowel culture is

restored. Magnesium and potassium are probably also deficient, a condition which

also carries along a disease state.

Prednisone has a nasty side effect of bowel perforation, which often predicates

bowel operations, so you should probably try to get off it.

I've seen a lot of good come about in less than a week with these things; COPD

was reduced in one elderly lady in just days for example, with selenium, whey,

vitamin C, and a B-complex. She was amazed she could walk to the store again

without lugging her oxygen tank. She hadn't been out of the flat for three

months because she couldn't breathe, but the " after picture " was so good she

booked a trip to Mexico

all good,

Duncan

>

> Hello all. I'm Marenda, 46 single, no kids and I have rheumatoid arthritis

(diagnosed at 35) with related lupus/lungs problems and osteoarthritis. My

Rheumatologist also thinks I might have fibromyalgia. My hands are starting to

deform and I am worried my feet might be next. The only meds I am taking is

methotrexate and prednisone which isn't helping the pain and deformity

obviously.

>

> I just purchase Dr. Bruce Fife book " The New Arthritis Cure " and I hope it

improves my condition. I fit has helped anyone I would like to hear from you.

Thank you.

>

> Marenda

>

> P.S. Was that too much personal info? I'm desperate for relief.

>

Posted May 13, 2011 · May 13, 2011

Thank you Duncan and all who gave.

I am taking MSM in powder form and cod liver oil in softgels (does it matter if

its in gels cap or liquid form?). I do eat a banana a day for potassium. I use

Tropical Traditions Extra Virgin Coconut oil which yesterday I did the oil

pulling and took three tablespoons separately throughout the day. I don't know

if it was the toxins or I am coming down with the flu but last night was

horrible. I was so sick and mucus coming out of everywhere, makes me not want to

do it again, seriously I feel terrible and so weak. I think in the book it says

this reaction is normal for a couple of days? Anyway I guess I will add the

others like zinc. Thank you all again.

Marenda

>

> Hi Marenda;

>

> Your diseases are in the group of " oxidative stress " diseases listed in the

glutathione references. Data on how glutathione is involved in reduction of the

oxidative stress in all these disease:

> http://members.shaw.ca/duncancrow/glutathione-references.html

>

> A low-carb diet with added inulin and inulin vegetables, undenatured whey, and

selenium will figure prominently in your cure, as it reduces toxin load and

increases glutathione manufacture. As you progress and get more involved with

removing the polyunsaturated oils from the diet you'll learn which other dietary

can help balance your fatty acids.

>

> Cod-liver oil or DHA oil for example will help with the inflammation; this is

absent from coconut oil. Coconut oil itself won't cure a disease related to this

fatty acid insufficiency because it contains none. VCO actually can and has made

fatty acid deficiencies seem worse. VCO and especially some of its derivatives

such as capric and caprylic acids, the MCT oils used in most of the research,

may give you more energy.

>

> The toxin-based oxidative " diseases " are seriously aggravated by bowel

dysbiosis (bad bowel ecology), a main source of the oxidative stress " . The good

fats in coconut oil will help a bad bowel ecology by subduing the numbers of

unwanted oil-enveloped organisms in the first several feet of upper GI tract.

Other compounds that kill germs that you will become aware of as you visit this

group are often used as well. Inulin is a specific food for the probiotics that

need to be fed in order to better control the bad bowel ecology:

> http://members.shaw.ca/duncancrow/inulin_prebiotic_probiotic.html

>

> Mineral supplements have to be increased because of the bowel malabsorption of

nutrients; for example zinc is needed to make stomach acid, and stomach acidity

is used to absorb zinc, but zinc is malabsorbed in bowel dysbiosis. So one

increases stomach acidity and also bowel acidity in order to better absorb the

zinc and other alkaline mineral supplements, at leat until the bowel culture is

restored. Magnesium and potassium are probably also deficient, a condition which

also carries along a disease state.

>

> Prednisone has a nasty side effect of bowel perforation, which often

predicates bowel operations, so you should probably try to get off it.

>

> I've seen a lot of good come about in less than a week with these things; COPD

was reduced in one elderly lady in just days for example, with selenium, whey,

vitamin C, and a B-complex. She was amazed she could walk to the store again

without lugging her oxygen tank. She hadn't been out of the flat for three

months because she couldn't breathe, but the " after picture " was so good she

booked a trip to Mexico

>

> all good,

>

> Duncan

Posted May 13, 2011 · May 13, 2011

Hi Marenda, a low-carbing approach to reduce bowel toxin load and encourage

better bowel ecology will have you ditch the highest-carb foods such as bananas.

Bananas' dry weight is nearly all carbs. Also out are potatoes, sweet potatoes,

yams, flour and starches, processed foods generally, the sweetest fruits, and

grains and exotic grains including corn, and most sugars. These all feed a

disease state while one is ill and especially the pesky toxin-producing abcteria

in the colon. If all goes well you might be able to add small amounts of a few

of them back in later.

Brussels sprouts and many other foods contain reduced carbohydrate and as much

potassium as bananas. Potassium can also be had as " No-salt " or some low-salt

salt products in the spice rack.

all good,

Duncan

>

> Thank you Duncan and all who gave.

>

> I am taking MSM in powder form and cod liver oil in softgels (does it matter

if its in gels cap or liquid form?). I do eat a banana a day for potassium. I

use Tropical Traditions Extra Virgin Coconut oil which yesterday I did the oil

pulling and took three tablespoons separately throughout the day. I don't know

if it was the toxins or I am coming down with the flu but last night was

horrible. I was so sick and mucus coming out of everywhere, makes me not want to

do it again, seriously I feel terrible and so weak. I think in the book it says

this reaction is normal for a couple of days? Anyway I guess I will add the

others like zinc. Thank you all again.

>

> Marenda

>

Posted May 13, 2011 · May 13, 2011

Duncan, come on you're killing me here, sweet potatoes and grains and banana's?

I just brought some sprouted spelt flour does that make a difference? Seriously

I don't know if I can give up cornbread and I'm only having it once or twice a

month now and I'm in Alabama. Are there grain substitutes I can use? The other

stuff I can give up but at least give me some form of bread, lol.

Marenda

>

> Hi Marenda, a low-carbing approach to reduce bowel toxin load and encourage

better bowel ecology will have you ditch the highest-carb foods such as bananas.

Bananas' dry weight is nearly all carbs. Also out are potatoes, sweet potatoes,

yams, flour and starches, processed foods generally, the sweetest fruits, and

grains and exotic grains including corn, and most sugars. These all feed a

disease state while one is ill and especially the pesky toxin-producing abcteria

in the colon. If all goes well you might be able to add small amounts of a few

of them back in later.

>

> Brussels sprouts and many other foods contain reduced carbohydrate and as much

potassium as bananas. Potassium can also be had as " No-salt " or some low-salt

salt products in the spice rack.

>

> all good,

>

> Duncan

Posted May 13, 2011 · May 13, 2011

When I went low carb, I gave up all fruits except for avocados, and

all grains. Twice a week I allow myself 1/4 cup of raspberries this

Spring.

Alobar

On Fri, May 13, 2011 at 3:58 PM, Marenda <marendaw@...> wrote:

> Duncan, come on you're killing me here, sweet potatoes and grains and

banana's? I just brought some sprouted spelt flour does that make a difference?

Seriously I don't know if I can give up cornbread and I'm only having it once or

twice a month now and I'm in Alabama. Are there grain substitutes I can use? The

other stuff I can give up but at least give me some form of bread, lol.

>

> Marenda

>

Posted May 13, 2011 · May 13, 2011

Ok, I'm still confused, it is low carb or no carb diet? Please forgive me but I

am new at this. Because many seem to suggest NO carbs as oppose to low carb

which mean carbs in low dosages.

Marenda

>

> When I went low carb, I gave up all fruits except for avocados, and

> all grains. Twice a week I allow myself 1/4 cup of raspberries this

> Spring.

>

> Alobar

Posted May 13, 2011 · May 13, 2011

One would need to give up all vegetables if one were going no carb.

Alobar

On Fri, May 13, 2011 at 5:58 PM, Marenda <marendaw@...> wrote:

> Ok, I'm still confused, it is low carb or no carb diet? Please forgive me but

I am new at this. Because many seem to suggest NO carbs as oppose to low carb

which mean carbs in low dosages.

>

> Marenda

>

Posted May 13, 2011 · May 13, 2011

What I mean is does low carb mean its ok to have grains maybe oence or twice a

month and no grains at all?

Maybe I am not understanding what they mean by low carbs.

Marenda

> > Ok, I'm still confused, it is low carb or no carb diet? Please forgive me

but I am new at this. Because many seem to suggest NO carbs as oppose to low

carb which mean carbs in low dosages.

> >

> > Marenda

> >

>

Posted May 13, 2011 · May 13, 2011

I think when they say no carb diet they mean no simple carbs.

Craig

> > Ok, I'm still confused, it is low carb or no carb diet?

> Marenda

> >

>

Posted May 13, 2011 · May 13, 2011

Ok thank you. Can someone recommend a good book on low carbs or list those

simple carbs like on a website or something. Thank you.

Marenda

> > > Ok, I'm still confused, it is low carb or no carb diet?

> > Marenda

> > >

> >

>

Posted May 13, 2011 · May 13, 2011

I like to call it reduced carb when I remember, as it would apply to overall

carb loading portion-wise as well as how high glycemic the food is. It's low

carb as Craig says, not " no carb " , 'coz all the veggies, even lettuce, have

carbs, as Alobar pointed out.

Everyone should be on a reduced carb/low carb loading diet because we haven't

evolved to tolerate a lot of carbohydrate in our diet without exacerbating

disease, and it's up to us to determine what too much is for our system. In

essence raising glucose and insulin level is a life-shortener via glycation even

if it's kept at low levels.

For me, each decision is important because I do eat some carbs. I think about

whether the dish is mostly carbohydrate or not, or how nutrient dense it really

is, and weigh that against how hungry I really am and what else I'll be eating

over the day. If I cheat I'll not cheat for a couple of days to balance it out.

I'm just under 5'10 " and 154 lbs again this morning.

But for the people with dysbiosis or gut candida issues, they can't think in

terms of cheating because each cheat can set them back several days. My wife is

still in that category.

all good,

Duncan

>

> I think when they say no carb diet they mean no simple carbs.

> Craig

>

Posted May 13, 2011 · May 13, 2011

If the problem is bowel toxicity, some doctors give an antibiotic program to

clean the slate. You can do it too with OTC and natural products. Some germ

killing supplements include olive leaf extract, MCT oil, coconut oil; most

essential oils have germ killing properties. You could also use Homozon, a

potent form of magnesium peroxide, (an oxygen therapy like ozone saunas or ozone

salve) and/or colloidal silver, to kill most organisms if you can get the

therapy to them.

You'd add probiotics as a proposed starter culture, all you can eat; capsules,

yogurt, sour cream, real (not canned) sauerkraut, kefir, cottage cheese and

such. Feed the starter culture insoluble fiber that they can digest and unwanted

pathogens and most commensal bacteria can not. Inulin has the best performance

as a selective feed of the soluble fibers. The probiotics restore order and

reduce toxin load.

You can also curb harmful bacterial adhesion with undenatured whey. Details are

on my site, second link on this page:

http://http://tinyurl.com/whey-page

I'm not aware of a grain substitute but Dreamfields pasta has only one tsp of

carb per serving. There might be a lot you'd agree with given the variety

available; get ideas or Dramfields pasta at: http://thelowcarbgrocery.com

At any rate if bowel dysbiosis is an issue, and my doctor says 80% of the adult

population has it, feeding it carb dishes prolongs the cure process even if

you're taking those herbals to kill upper GI tract bacteria, antifungals for the

candida and eating probiotics.

Some people can relax a bit and eat things like sprouted spelt, which is about

80% carbohydrate. At least it's not sugar or white rice. The cornbread should be

outlawed but a couple of times a month is a binge you can recover from; a

continuous supply of carbs, even a trickle, is bad for the therapy. Maybe you

won't get bloated and gassy when you eat cream of chicken soup, maybe you will.

Low carbing and high vegetables, especially raw, is part of a toxin cleansing

routine anyway, you have toxin-induced disorders, and getting familiar with its

principles probably will get you healthier as you commit to it.

Actually a read of my protocol might help. It's a work in progress but works the

way it is; it needs an update to include di-indolylmethane (DIM) and

sulforaphane, but it hits most of the most important considerations:

http://tinyurl.com/crow-protocol

As it points out, lupus and osteoarthritis are in the group of metabolic

disorders and it increases ATP energy and metabolic rate for fast recovery.

Nearly all also have the characteristic of oxidative stress. This is

particularly debilitating but can be considerably reduced, and people start to

heal when it is.

For now, take a look at the science of probiotics prebiotics, and bowel health;

the best primer in the inulin references I think is Tungland's

Conmprehensive Review:

http://tinyurl.com/inulin-references

all good,

Duncan

>

> Duncan, come on you're killing me here, sweet potatoes and grains and

banana's? I just brought some sprouted spelt flour does that make a difference?

Seriously I don't know if I can give up cornbread and I'm only having it once or

twice a month now and I'm in Alabama. Are there grain substitutes I can use? The

other stuff I can give up but at least give me some form of bread, lol.

>

> Marenda

>

Posted May 16, 2011 · May 16, 2011

I would like to thank you for all for the suggestions.

I am going to whole foods and want to be sure what I wrote down is correct. I

will need to get:

Vitamin C and D.

Minerals Zinc and chelated Magnesium.

Selenium (still not sure what that is).

Undenatured Whey - this might be optional for me because I am lactose

intolerant.

Cod liver oil.

MSM - I already take this in powder form.

Oil pulling therapy with extra virgin coconut oil - started May 12th.

Book on low-carb diet.

Ok I think that is all that was suggested to me but if I have missed anything

please add to it. Thank you all again.

Marenda

>

> If the problem is bowel toxicity, some doctors give an antibiotic program to

clean the slate. You can do it too with OTC and natural products. Some germ

killing supplements include olive leaf extract, MCT oil, coconut oil; most

essential oils have germ killing properties. You could also use Homozon, a

potent form of magnesium peroxide, (an oxygen therapy like ozone saunas or ozone

salve) and/or colloidal silver, to kill most organisms if you can get the

therapy to them.

Posted May 16, 2011 · May 16, 2011

Hello Peggy and thank you for your story. Unfortunately being on state insurance

I can't afford a naturopathic doctor and because I am obese with limited

mobility (power wheelchair) and breathing problems getting on a rebounder is

out. But I do appreciate your help. Thank you.

Marenda

> Marenda,

> My heart goes out to you. When I was your age I had everything you do. My