New Member

[Guest guest]

>

>

> Welcome OKD,

>

> What is your diagnosis from the rheumy and endocrinologist? You have

> been through a lot, and I know your just wanting some peace. The RA

> meds are very scary, and we've all been where you are. I hope your

> doctor can figure out what's going on, and get you feeling better.

>

> Take care,

>

> Tawny

Tawny, sorry (too fast hitting return). My diagnosis from the Rheumy is RA.

From the Endocrinologist is Hashimoto's Thyroiditis and Vit D Deficiency (now

being corrected), she said the burning bone pain could have been cause by the D

Deficiency (I have been complaining to her for several weeks about the pain). I

am lucky, I work in a hospital and can " navigate " the system, because here the

wait to see a Rheumy as a new patient is months, luckily, I was labelled urgent

and she saw me within one month.

>

> I am, as I said, really researching alternative methods. I know the addition

of Omega 3 (2,000 a day) and Calcium (2400) a day, plus 50,000 units of Vit D

once a week, in addition to adding cold water fish once or twice a week (salmon,

etc), as well as cherries, and dark berries everyday, may well have added to my

feeling better. Pineapple is also anti-inflam. I think moving, excercising

somehow, is better than nothing, even if you are debilitated, there are chair

exercises, etc....Tai Chi looks very promising, it is gentle movement.

[Guest guest]

A lot depends on your age, and whether you plan to have children.

Your natural level of T is low, but much higher than mine was. I'm 59 years old

with a grown daughter and my T was 150.

If you go on T, you will feel better and gain many health benefits, but your

testicles will eventually shut down and you will need to continue T for the rest

of your life.

It may be possible to keep yours functioning for while taking very low levels of

T, but don't count on it.

Injections of testosterone cypionate have really improved my life. I'm active,

exercise regularly and feel great. Sterility is not an issue since my wife if 51

years old.

My insurance co-pay is $15 for a 10 ml vial which, in theory, lasts 20 weeks.

In practice I sometimes take a little extra.

My testicles are now the size of marbles, but no one sees them but my wife and

doctor.

>

> Hi, can somebody give me advice about whether i should take TRT. My levels

checked 3 times were 300-350 range. i got these in

afternoon.LH,FSH,estradiol,ferritin,prolactin are in therapeutic range, in

middle.I dont know why my T is borderline. My symptoms are mainly fatigue, easy

fat gain. I was on T for few months, i felt great on it, but testicles start

shrinking and hard to be compliant. Without TRT i can function, but i feel

better on TRT. My endo thought i dont need, but finally prescribed at my

request. Do you guys think i should be on TRT. Any advice greatly appreciated.

>

[Guest guest]

Lets see............ By your own words you said you felt better on it, and

your worry was that your testicles were getting smaller.....

Why not add HCG to the mix and that will keep your testicles at normal size

and you will have the health benefits of a higher " T " level, feel better,

and still have the normal sized marbles to play with and be better all the

way around.

Just my two cents worth.

Doc

On Sat, Jun 27, 2009 at 10:07 AM, Randy Hoops <Randy@...> wrote:

>

>

> A lot depends on your age, and whether you plan to have children.

>

> Your natural level of T is low, but much higher than mine was. I'm 59 years

> old with a grown daughter and my T was 150.

>

> If you go on T, you will feel better and gain many health benefits, but

> your testicles will eventually shut down and you will need to continue T for

> the rest of your life.

>

> It may be possible to keep yours functioning for while taking very low

> levels of T, but don't count on it.

>

> Injections of testosterone cypionate have really improved my life. I'm

> active, exercise regularly and feel great. Sterility is not an issue since

> my wife if 51 years old.

>

> My insurance co-pay is $15 for a 10 ml vial which, in theory, lasts 20

> weeks. In practice I sometimes take a little extra.

>

> My testicles are now the size of marbles, but no one sees them but my wife

> and doctor.

>

>

> >

> > Hi, can somebody give me advice about whether i should take TRT. My

> levels checked 3 times were 300-350 range. i got these in

> afternoon.LH,FSH,estradiol,ferritin,prolactin are in therapeutic range, in

> middle.I dont know why my T is borderline. My symptoms are mainly fatigue,

> easy fat gain. I was on T for few months, i felt great on it, but testicles

> start shrinking and hard to be compliant. Without TRT i can function, but i

> feel better on TRT. My endo thought i dont need, but finally prescribed at

> my request. Do you guys think i should be on TRT. Any advice greatly

> appreciated.

> >

>

>

>

[Guest guest]

Welcome to the group! I live in NY and a lot of my 8dd dr's are in Westchester

and NYC. I'd be glad to suggest some good Ped Neurologists if you'd like.There

are some good groups in the White Plains area. Not sure how big Fairfield is or

if Westchester would be too far? A Ped Neuro is good to have on board since

Apraxia is a Neurological condition, its good if they get to know your child now

before the transition to the school system. they can write scripts for services

in school and any further testing.

>

> Hello everyone,

> I wanted to introduce myself, I am Carolyn and a mother to my adorable 2.5

year son who has verbal apraxa. We live in CT and he receives 2x a week speech

through BT3 and I pay private 2x a week of speech. The progress is very slow but

he is progressing. I always question in my mind am I doing enough for him? A

question for all of you out there, did you take your child to a neurologist? I

have not yet but think I am going to as soon as I find a good one. Any

suggestions on a good one in lower fairfield area of CT?

>

> Thank you

>

[Guest guest]

Welcome Carolyn. We hope that you find a variety of tips here to help you with

your journey.

We did go to a neurologist (pediatric). Although I think she might be good

neurologist, the visits have proved unhelpful for us. She fouses on his MS since

she has a child with DS and cannot seem to see that I am there strictly for the

apraxia.

But the good news is I am in GA and not in CT.

I had a list of specific goals for going to the ped. neuro., and to date, she

has not met my goals. We wanted an MRI to rule out brain abnormalities (delayed

myelination, brain tumor, etc...)as the cause for the apraxia and to see if we

could determine the exact location of the problem in my son's brain. The neuro.

said her plan of treatment, which has not been anything to date (?),would not

change. I disagree and feel that if she found something, perhaps a treatment

could be started (depending on what she found).

You can make an appointment with a pediatric neurologist and see how helpful it

is to you and report the findings for others who live in CT, but I do suggest

you making a list of what you expect to gain by it and see if your plan gets

met.

Good Luck~

[Guest guest]

The pimples on his bottom and the asthma symptoms sound just like my son. The pimples are a symptom of yeast parasites. Antibiotics destroy the healthy bacteria in the intestine which help with digestion. Once the good bacteria are gone then yeast parasites move in which then causes inflammation and food allergies, leading to asthma. The antibiotics and steroids are part of the problem and need to be stopped when safe to do so. I would find a Naturopath where you live to help you get all of your kids on good probiotics. I would recommend the Naturopath also do a stool analysis to see what kind of parasites your kids might have. The might have a parasitic yeast that is different from Candida. Food allergy testing could be very helpful (both acute allergy and delayed sensitivity testing). I learned my son is allergic to eggs which is one of the staples of the GAPS diet. I also learned he was intolerant of coconut.My son also had speech issues. Once the yeast was cleared with a prescription drug, Nystatin, we began to see huge improvements. Once we took him off gluten and dairy we also saw big improvements. He would often mix-up pronouns, referring to himself in the third person, or second person. His speech was very difficult to understand in general. Since your children are already GFCF, I suspect they may have fungal infections throughout their body. Yeast infections in the body can cause all kinds of behavioral issues- brain fog, difficulty concentrating, anxiety, hyperactive behavior, depression. A prescription drug, Diflucan, may be more helpful for your kids. Nystatin only will kill yeast in the gut.You can also feed them raw, organic coconut oil. They may complain of tummy aches and may have diarrhea as the yeast goes away. GAPS can be helpful but you must do a rotation diet. I didn't and my son developed sensitivities to many of the GAPS foods, particularly nuts.The juicing recommended in the GAPS book is also helpful. I wish I had done it sooner. Some kids won't do it but mine will and it's been good for him. Vegetable juices given on an empty stomach will kill yeast in the intestine as well.Here's the success story. My son's asthma is nearly gone. I think he's needed his nebulizer only once in the last 8 months or so. His speech is leaps and bounds better (this took many months to improve). His behavioral problems are gone. He can now go to school. He rarely has tantrums. His anxiety about leaving the house is gone. He doesn't get overexcited or have trouble transitioning from one activity to the next. The key is to get rid of the yeast. I can't emphasize this enough. The GAPS diet alone couldn't do this for him and I had him on the diet for months before he finally went on anti-fungal medicines and got much better.In short, it can be at times exhausting to give all the supplements and be on the diet and deal with all the questions and nay-sayers about the approach BUT I am seeing great improvements to his health and quality of life. The sooner you can get your kids off of the cycle of antibiotics and steroids, the better. It is causing the problems. Again, find a Naturopath. Ideally, you would be able to find an MD who is also a Naturopath.On Aug 3, 2009, at 6:42 PM, Danila7 wrote:Hello, My name is Mariya. I am a mom of four – 7-year old twins, 5-year old and a 2-month old. One of the twins has been diagnosed with PDD-NOS around 3 years of age. He used to have meltdowns over everything, had scripted speech with memorized books (word by word) and no original conversation of his own beyond 1-2 word requests. We put him on a GFCF diet, and then re-introduced dairy after 3 months, with no visible impact. Ben has been doing better on GF diet. Less meltdowns, conversation. However, he still struggles with more complex logic (like determining reasons why things happen and forecasting what will happen next), as well as following multi-step directions. Self help skills are not great either, he has trouble getting some concepts. Ben attends special education class, and mainstreaming is not going well due to attention issues. In the last year, he started getting coughing spells with wheezing (asthma-like) and occasional sores/pimples on his behind. Doctors treat it with steroids and antibiotics. Clearly GF diet is not enough, so I want to find a better way. I am half way through GAPS diet book, and my husband and I are set on implementing it. It is a lot to take in with all the restrictions… so I am looking for support, advice, warnings and success stories.=

[Guest guest]

Gaps seems impossible at first, but it really gets easier. I've been doing it

for about 6 months, and I find that I don't miss my old favorites much at all.

I think the benefits to your health and state of mind are so great that the

difficulty is worth it. I know it's different for everyone, and a special

challenge when you're trying it with kids (my kids are not on Gaps), but it's an

amazing diet.

My friends' blog has been especially helpful to me:

http://www.grainfreefoodie.blogspot.com/

So has the Gaps group, which you're probably aware of, but just in case:

GAPShelp/

Good luck!

>

> Hello,

> My name is Mariya. I am a mom of four – 7-year old twins, 5-year old and a

2-month old. One of the twins has been diagnosed with PDD-NOS around 3 years of

age. He used to have meltdowns over everything, had scripted speech with

memorized books (word by word) and no original conversation of his own beyond

1-2 word requests. We put him on a GFCF diet, and then re-introduced dairy after

3 months, with no visible impact. Ben has been doing better on GF diet. Less

meltdowns, conversation. However, he still struggles with more complex logic

(like determining reasons why things happen and forecasting what will happen

next), as well as following multi-step directions. Self help skills are not

great either, he has trouble getting some concepts. Ben attends special

education class, and mainstreaming is not going well due to attention issues. In

the last year, he started getting coughing spells with wheezing (asthma-like)

and occasional sores/pimples on his behind. Doctors treat it with steroids and

antibiotics. Clearly GF diet is not enough, so I want to find a better way. I am

half way through GAPS diet book, and my husband and I are set on implementing

it. It is a lot to take in with all the restrictions… so I am looking for

support, advice, warnings and success stories.

>

[Guest guest]

susan,

how do you do this without your kids being on it? I feel like I am so

undisciplined that if any " illegals " are around I would eat them. just curious!

kristen

> >

> > Hello,

> > My name is Mariya. I am a mom of four � 7-year old twins, 5-year old and a

2-month old. One of the twins has been diagnosed with PDD-NOS around 3 years of

age. He used to have meltdowns over everything, had scripted speech with

memorized books (word by word) and no original conversation of his own beyond

1-2 word requests. We put him on a GFCF diet, and then re-introduced dairy after

3 months, with no visible impact. Ben has been doing better on GF diet. Less

meltdowns, conversation. However, he still struggles with more complex logic

(like determining reasons why things happen and forecasting what will happen

next), as well as following multi-step directions. Self help skills are not

great either, he has trouble getting some concepts. Ben attends special

education class, and mainstreaming is not going well due to attention issues. In

the last year, he started getting coughing spells with wheezing (asthma-like)

and occasional sores/pimples on his behind. Doctors treat it with steroids and

antibiotics. Clearly GF diet is not enough, so I want to find a better way. I am

half way through GAPS diet book, and my husband and I are set on implementing

it. It is a lot to take in with all the restrictions� so I am looking for

support, advice, warnings and success stories.

> >

>

[Guest guest]

Your friend’s blog is awesome! Has some great recipe

ideas! Thanks for sharing!!

Eileen

Re: New member

Posted by:

" smharde " smharde@...

smharde

Fri Aug 7, 2009

9:24 am (PDT)

Gaps seems impossible at first, but it really gets easier. I've been doing it

for about 6 months, and I find that I don't miss my old favorites much at all.

I think the benefits to your health and state of mind are so great that the

difficulty is worth it. I know it's different for everyone, and a special

challenge when you're trying it with kids (my kids are not on Gaps), but it's

an amazing diet.

My friends' blog has been especially helpful to me:

http://www.grainfreefoodie.blogspot.com/

[Guest guest]

It's funny you ask, because I was so hungry this evening that I slipped a little

and ate two small pieces of breaded chicken. It's the first time I've cheated

in 6 months on the diet, and so far I'm not suffering for it. If I had eaten

more, I'm sure I'd be feeling awful.

I don't get tempted that often, mostly because I usually make sure I have

something yummy that I CAN eat, and because I remember how horrible I felt

before. I had such a bad digestive problem that I had lost 50 pounds in 6

months without trying, and I could barely eat anything without feeling nauseous.

I feel so much better on Gaps that I don't feel it's worth it to cheat.

Plus--although there are illegals around, the whole family " leans " toward Gaps

now, since I do most of the cooking.

> > >

> > > Hello,

> > > My name is Mariya. I am a mom of four � 7-year old twins, 5-year old and

a 2-month old. One of the twins has been diagnosed with PDD-NOS around 3 years

of age. He used to have meltdowns over everything, had scripted speech with

memorized books (word by word) and no original conversation of his own beyond

1-2 word requests. We put him on a GFCF diet, and then re-introduced dairy after

3 months, with no visible impact. Ben has been doing better on GF diet. Less

meltdowns, conversation. However, he still struggles with more complex logic

(like determining reasons why things happen and forecasting what will happen

next), as well as following multi-step directions. Self help skills are not

great either, he has trouble getting some concepts. Ben attends special

education class, and mainstreaming is not going well due to attention issues. In

the last year, he started getting coughing spells with wheezing (asthma-like)

and occasional sores/pimples on his behind. Doctors treat it with steroids and

antibiotics. Clearly GF diet is not enough, so I want to find a better way. I am

half way through GAPS diet book, and my husband and I are set on implementing

it. It is a lot to take in with all the restrictions� so I am looking for

support, advice, warnings and success stories.

> > >

> >

>

[Guest guest]

That is a great blog. Here are some others:

www.gapsguide.com

www.gapsters.blogspot.com

www.westonpriceuk.blogspot.com

>

> Your friend's blog is awesome! Has some great recipe ideas! Thanks for

> sharing!!

>

>

>

> Eileen

>

>

>

>

>

>

>

> < /message/3109;_ylc=X3oDMTJyMW8

> zODMyBF9TAzk3MzU5NzE1BGdycElkAzIxMzM5Njg3BGdycHNwSWQDMTcwNTA2MTYwMQRtc2dJZAM

> zMTA5BHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEyNDk3MjU1Nzk-> Re: New member

>

>

> Posted by: " smharde "

> <mailto:smharde@...?Subject=%20Re%3A%20New%20member> smharde@...

> <smharde> smharde

>

>

> Fri Aug 7, 2009 9:24 am (PDT)

>

>

>

>

> Gaps seems impossible at first, but it really gets easier. I've been doing

> it for about 6 months, and I find that I don't miss my old favorites much at

> all. I think the benefits to your health and state of mind are so great that

> the difficulty is worth it. I know it's different for everyone, and a

> special challenge when you're trying it with kids (my kids are not on Gaps),

> but it's an amazing diet.

>

> My friends' blog has been especially helpful to me:

> <http://www.grainfreefoodie.blogspot.com/>

> http://www.grainfreefoodie.blogspot.com/

>

[Guest guest]

Sharon, I am as pro-alternative as anybody here, but in the case of

melanoma (I have lost 2 friends from melanoma.) Nothing to mess with, as

melanoma can burrow down deep and then spread out, and it can do it very

quickly. Other than trying bloodroot (Cansema or Black Salve), I don't

think there are any alternatives. This is a case where weeks may

literally be too late. If you find someone who has used Black Salve for

melanoma, great, and they may have a better opinion.

I'd really suggest the surgery, but no chemo and no radiation. Use

alternatives after the surgery; get rid of the cancer, and then use

alternatives to build up the immune system. (There are even Black Salve

type things to take internally...) My 2¢ ..

Dave

spirit_clicker wrote:

> Hi, I found this group because I am desperately looking for something other

than traditional medicine for malignant melanoma. I was just diagnosed with it

from a mole on my left arm. It is very scary for me. I am supposed to go the

University hospital when the doctor calls me with the appointment. I do not

want to go. When I looked up what their treatment was, all I found was surgery.

I'm not sure what direction to go. I have looked for local alternative

physicians and did find one. Is this the route I should take? Any advice would

be appreciated.

> Thank you,

> Sharon

>

>

[Guest guest]

Hi Sharon,

I'm sorry about your diagnosis.

We cannot tell you whether or not you should do alternative or traditional

treatment, of course. You will need to make that decision on your own.

But do go to the doctor and listen to what he has to say. And continue to

research alternative stuff.

Then you will be more educated in making your decision.

All my best.

ar

[Guest guest]

Sharon -

I too have malignant melanoma. I was diagnosed with it when I had a

mole removed from my neck in Dec '08. I had it excised in January

where they found clear margins but a positive sentinel lymph node. The

node was actually fractured when removed. They went back in to remove

more lymph nodes in February where they found no more disease in my

lymphatic system but some did appear in the soft tissue around the

primary node. There was a negative margin around that. The plan was to

rest/ heal from both surgeries and then start radiation. Before

radiation started, I found another spot on the right side of my neck.

It came back positive for melanoma as well. They wanted to do another

excision on the right side this time. Just before surgery I started

experiencing abdominal pains. I had a CT done that showed that I had

metastatic disease on my liver, spleen and left adrenal gland. This

was May 5, 2009.

Bottom line, do not wait! This disease can be very aggressive! I think

it was the right decision for me to have surgery and remove the known

cells that could be removed. After each surgery my doctor said, " we

got it all! " . Obviously you can never be too sure.

Since May, I started looking into alternative treatments and become

very interested in the Gerson Therapy. I've also been seeing a

naturopath that has me on a number of supplements including VitC, VitD

and Melatonin for their various benefits. I also removed meat,

alcohol, chemicals, white and processed foods from my diet. (this is a

must!)

You can use this website to find a naturopathic doctor in your area.

http://www.naturopathic.org/

I am doing all that I can now -- and I feel great. After starting the

VitC, I can no longer feel the tumors in my stomach. I only wish I

started doing these things sooner!!

Mike Brockey

On Aug 10, 2009, at 8:35 PM, spirit_clicker wrote:

> Hi, I found this group because I am desperately looking for

> something other than traditional medicine for malignant melanoma. I

> was just diagnosed with it from a mole on my left arm. It is very

> scary for me. I am supposed to go the University hospital when the

> doctor calls me with the appointment. I do not want to go. When I

> looked up what their treatment was, all I found was surgery. I'm not

> sure what direction to go. I have looked for local alternative

> physicians and did find one. Is this the route I should take? Any

> advice would be appreciated.

> Thank you,

> Sharon

[Guest guest]

Sharon,

If I were in your situation the first thing I would do is get hold

of some Bloodroot preparation, for internal use, from a reputable supplier, and

start on it immediately.

My reasoning is that weather I decided on surgery or alternatives, this would be

an integral part of the treatment.

(You may or may not know that Bloodroot is the basis of Black Salve.)

As I have used Black Salve for a few years now in the treatment of various

stages of skin cancers on myself, (my wife has also) and am well aware of the

pain and the terrible looking process, I would opt for using it over surgery,

mainly because I have had so many return after having been excised with

supposedly clear margins, but not had one return after using Black Salve.

The issue of the depth and extent of the melanoma would not worry me

too much because of the taking of an internal bloodroot preparation.

Before you make up your own mind it is essential that you do your own

research, and base your decision on your findings and your needs.

One thing I would add is that you will find horrific looking photos of

treatments with Black Salve, but you need to keep in mind that these are the

equivalent to seeing pictures of the surgery involved in excision of tumours,

just as horrific / dramatic.

My experience is that it does look dramatic, and it can be quite painful, but

the long term result is less scarring than surgery, and no numb areas resulting

from severed nerves as in surgery.

Bloodroot has shown itself to to me to be a very useful treatment.

6 or 7 months ago my dog was diagnosed with Pancreas cancer and he had a rapid

growing tumour on his front foot. It grew so fast that it burst the skin of his

pad and he could not walk.

The vet advised that all he could do would be to remove the foot, and

chemo and radiation for the pancreas, but because the dog is almost 13 he

thought it best to take him home and bring him back in a few weeks to be put

down as he would not have any longer that.

I had some Black Salve (but no internal prep) and because these things are not

available here in Australia, in desperation I started him on Black Salve which I

put in capsules, and also applied it daily to his foot.

To cut a long story short, he is walking around today with no sign of

where the tumour was on his foot and the vet declared him clear of pancreas

cancer a couple of months ago. I might add that the vet was astounded at the

result.

Whatever you decide to do based on your own needs and research, may I

wish you all the very best.

Phill

[Guest guest]

Hi Jack,

 

I just want to try to help you out with the cost of the salt if you choose this

protocol.  It's expensive enough and in capsule form even more so....I took a

gram capsule and dumped it in a 1/4 tsp measure....That gave me about how much

to use to equal one gram and I buy it loose.   I've found the San Francisco Bath

Salt Co. on the internet to be the cheapest to buy the salt for now.  I think

the miniumum might be 5 lbs....But I just bought some that came to $2 a pound

including shipping.  JUST MAKE SURE you find the " LIGHT PINK "    on the site.  It

claims it has the same exact things as the dark, but it is much cheaper. 

-

From: Jack <jackdotcom@...>

Subject: [ ] New Member

Date: Tuesday, August 11, 2009, 11:28 AM

 

I was diagnosed yesterday with possible lyme disease and am joining this group

today with the hope that I can find out something that will help me kill bugs in

my bloodstream.

I am on social security and have suffered from candida overgrowth for many years

now. Nothing appears to work to get rid of it.

Yesterday I was told I have spirochetes in my blood that could be lyme disease,

but in any case a treatment for lyme may get rid of them. Because of my age, I

am told it may take a long time to get rid of them, therefore I want to be

careful to start something that has a good chance to work.

I am told that these spirochetes may be suppressing my immune function, causing

the Candida to spread, and making it difficult for my body to do anything about

the spirochetes themselves.

I cannot take antibiotics because it will cause my candida to spread wildly and

I will not take that risk again.

Which leaves me alternative options. I want to try the salt/vitamin C protocol

first, until I can order something like the Cowden or Calvin protocol to take

long term.

Anybody know anything about the salt/vitamin C protocol? Where can I get

Himalayan salt in capsule form for this? What dosages do people recommend. I am

completely new to this.

Also, what do people prefer who know about them, the Cowden or Calvin protocol,

and how do I order it?

Thanks for any help in this. The internet is a wonderful place for commmunity

now, and hope

--Jack

[Guest guest]

Actually salt/c can be very cheap. Any good salt without additives seems to

work for people. That includes seal salts or purified salt tablets. Just

don't use processed table salt like Morton's.

My wife uses realsalt www.realsalt.com and just mixes 14/tsp directly into

water along with a packet of EmergenC and that’s one 1g dosage. While on

Salt/c she was doing aprox 6g/day.

> Re: [ ] New Member

>

> Hi Jack,

>  

> I just want to try to help you out with the cost of the salt

> if you choose this protocol.  It's expensive enough and in

> capsule form even more so....I took a gram capsule and dumped

> it in a 1/4 tsp measure....That gave me about how much to use

> to equal one gram and I buy it loose.   I've found the San

> Francisco Bath Salt Co. on the internet to be the cheapest to

> buy the salt for now.  I think the miniumum might be 5

> lbs....But I just bought some that came to $2 a pound

> including shipping.  JUST MAKE SURE you find the " LIGHT PINK "  

>   on the site.  It claims it has the same exact things as the

> dark, but it is much cheaper. 

>

> -

[Guest guest]

-Actually the folks that came up with the salt/c protocol, www.lymephotos.com ,

recommend pure sodium chloride. You can buy it in one gram tablets. See thier

site for source. Merlyn

-- In , GARY ABEL <gajon12@...> wrote:

>

> Hi Jack,

>  

> I just want to try to help you out with the cost of the salt if you choose

this protocol.  It's expensive enough and in capsule form even more so....I took

a gram capsule and dumped it in a 1/4 tsp measure....That gave me about how much

to use to equal one gram and I buy it loose.   I've found the San Francisco Bath

Salt Co. on the internet to be the cheapest to buy the salt for now.  I think

the miniumum might be 5 lbs....But I just bought some that came to $2 a pound

including shipping.  JUST MAKE SURE you find the " LIGHT PINK "    on the site.  It

claims it has the same exact things as the dark, but it is much cheaper. 

>

> -

>

>

>

> From: Jack <jackdotcom@...>

> Subject: [ ] New Member

>

> Date: Tuesday, August 11, 2009, 11:28 AM

>

>

>  

>

>

>

> I was diagnosed yesterday with possible lyme disease and am joining this group

today with the hope that I can find out something that will help me kill bugs in

my bloodstream.

>

> I am on social security and have suffered from candida overgrowth for many

years now. Nothing appears to work to get rid of it.

>

> Yesterday I was told I have spirochetes in my blood that could be lyme

disease, but in any case a treatment for lyme may get rid of them. Because of my

age, I am told it may take a long time to get rid of them, therefore I want to

be careful to start something that has a good chance to work.

>

> I am told that these spirochetes may be suppressing my immune function,

causing the Candida to spread, and making it difficult for my body to do

anything about the spirochetes themselves.

>

> I cannot take antibiotics because it will cause my candida to spread wildly

and I will not take that risk again.

>

> Which leaves me alternative options. I want to try the salt/vitamin C protocol

first, until I can order something like the Cowden or Calvin protocol to take

long term.

>

> Anybody know anything about the salt/vitamin C protocol? Where can I get

Himalayan salt in capsule form for this? What dosages do people recommend. I am

completely new to this.

>

> Also, what do people prefer who know about them, the Cowden or Calvin

protocol, and how do I order it?

>

> Thanks for any help in this. The internet is a wonderful place for commmunity

now, and hope

>

> --Jack

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

That should have read 1/4 tsp not 14/tsp! Sorry for the typo!

> RE: [ ] New Member

>

> Actually salt/c can be very cheap. Any good salt without

> additives seems to

> work for people. That includes seal salts or purified salt

> tablets. Just

> don't use processed table salt like Morton's.

>

> My wife uses realsalt www.realsalt.com and just mixes 14/tsp

> directly into

> water along with a packet of EmergenC and that’s one 1g

> dosage. While on

> Salt/c she was doing aprox 6g/day.

>

[Guest guest]

Yep.  They recommend pure sodium chloride and many others are saying that other

natural salts work as well.  I've seen many good comments about Himalayan salt. 

With all the conflicting views on anything and everything, we have to go with

our gut.  I get the feeling that all natural salt, with all the minerals that we

have in our system is a good thing to take.  But maybe the minerals get in the

way of the " bullet " .  However, for now I'm sticking with my gut and himalayan

salt.

 

From: Merlyn <menckemr@...>

Subject: [ ] Re: New Member

Date: Wednesday, August 12, 2009, 11:25 PM

 

-Actually the folks that came up with the salt/c protocol, www.lymephotos. com ,

recommend pure sodium chloride. You can buy it in one gram tablets. See thier

site for source. Merlyn

[Guest guest]

Hi !

Welcome to our group! You are in the right place here with our group! We can

all identify at some point or another with not just the drugs that you happen to

be taking, but the RA itself. It's an ugly disease but I know you will find that

this group is a wonderful support group!  It's so much easier to be able to

control the disease with a great support group then having the disease control

you!

 

I'm sorry that you are having the problems that you mentioned. Have you

discussed these with your doc? What does he say? Are you satisfied with your RA

doc at this time? What does he tell you about your heel? I get feet issues as

well as many others and once you start walking with a limp, that tends to effect

your hips, your back, etc. 

 

 A quick question in regards to taking nexium - I take that as well & have been

for some time. I have found that I have to take zantac during the day now - AND

I take 2 nexium in the am. instead of the prescribed 1/day. My RA doc is fine

with that. But not too sure if my gastroenologist (sp?) would be!!  Do you ever

find it isn't totally effective at times?  I've had GERD for almost 30 years. I

originally was on prescription zantac, then RX prilosec then the Nexium. I know

there is a new drug out that is better than nexium. But I haven't asked the doc

about that yet. Just changed rheumies myself.  Just a question I've had for

someone who takes it as well!

 

Again, welcome to our group. You will find a wonderful and caring group of

members that truly care about one another.

in SC

From: rogertyndall <rogertyndall@...>

Subject: [ ] new member

Date: Tuesday, September 8, 2009, 1:43 PM

 

Hello everyone, I'm a new member here. I have had RA for 13 years now. I am no

stranger to the pain and suffering of this disease. I'm a manager where I work

and it gets hard to work the long hours of management. I am currently taking

Humira, steroids, celebrex, actinel and nexium. I have been on these

prescriptions for many years. It seems that I have more pain as time goes on. My

left heel always bothers me and I walk with a limp. I have also developed a

itchy reaction to something yet to be identified. It sometimes wakes me up at

night. Anyway I thought it would be nice to talk to others that have the same

problems that I do.

Thank you

Tyndall

[Guest guest]

     Welcome to our wonderful group.  Sorry to read  that your foot is

bothering you.  I went to a foot dr., and I had Plantar Fascia, a very, very

painful heal.  I had a total of 3 cortisone shots in my heal.  It finally went

away, but, I tell you I was in agony.  I could not but any weight on my foot,

and could hardly walk.  Yes, I limped too.

     I hope you get some help with that heel.  I also bought 2 pairs of shoe

inserts from the foot dr.  They are wonderful and so worth the money.  RA hit my

feet and ankles the worst.

     I am wishing you many pain free days ahead.

     Again, welcome here.  Wonderful support from all the caring, loving members

here.

Hugs,

 

Barbara

From: rogertyndall <rogertyndall@...>

Subject: [ ] new member

Date: Tuesday, September 8, 2009, 1:43 PM

 

Hello everyone, I'm a new member here. I have had RA for 13 years now. I am no

stranger to the pain and suffering of this disease. I'm a manager where I work

and it gets hard to work the long hours of management. I am currently taking

Humira, steroids, celebrex, actinel and nexium. I have been on these

prescriptions for many years. It seems that I have more pain as time goes on. My

left heel always bothers me and I walk with a limp. I have also developed a

itchy reaction to something yet to be identified. It sometimes wakes me up at

night. Anyway I thought it would be nice to talk to others that have the same

problems that I do.

Thank you

Tyndall

[Guest guest]

Hi (again) !!

I told you - you got yourself involved with a very special group of people!!! 

You will see how comforting it is to be able to relate to others that are going

thru if not the exact same problems, pretty darn well close to it!

 

The cortisone shot just helps for how long with your shoulder(s)? I get them

about 3x a year in both of mine. I believe that is the limit with the drug. It

really depends on who gives them as to what amount of dosage is given. I have

found that my ortho surgeon gives me more of a max dose and will give it to me

in both shoulders vs the RA doc & PCP's out there (for me). No one other than my

ortho doc has been ever, ever willing to give me 2 injections at once. Now - I

am not a normal person when it comes to shldrs.....I've dislocated both a total

of 6x and have pins in my right one. I've got nerve damage due to the

dislocations but also RA. But I am not trying to make this about me - I want to

help you. Have you tried something like therma-care heat wraps for the shoulder

pain? I use them - as often as my skin will allow me to use them - for me, they

work about 12 hrs and really help. I also take cymbalta for the nerve damage

pain and that helps a whole

lot. Not sure of your exact pain and if you had previous injuries.............

 

I am 47 - was diagnosed about 5 yrs ago with RA - then eventually Fibromyalgia

as well. I just changed RA docs - so I just got thru the whole taking of half

your blood, x-rays of the body parts as well as bone density scans. I chose a

doc that specialized his residency in Rheumatolgy at john Hopkins after I went

thru so called " know it alls " . I have now been tested for just about every thing

in a medical book. I won't know his opinion until 9/23 but I am trusting this

guy a whole lot but I do feel good about the man......

 

I've been thru all of the standard drugs, + Enbrel, humira (reactions and/or

side effect issues to all)  then finally the miracle drug for me -

Rituxan.....but then I had to change insurance, then docs so I've been without

real treatment for a little over a yr.

 

I live in SC - do not work anymore at least not really. I had been in commercial

real estate for over 20 yrs === managing & leasing shopping centers & malls.

Luckily my husband has his own business and I am able to work whenever I feel

like it - doing the acctg, etc.  I am very fortunate - very blessed - especially

to be a part of this wonderful support group.

 

We are looking forward to hearing more about you - and we are so glad you are

one of our new friends!

in SC

From: rogertyndall <rogertyndall@...>

Subject: [ ] New Member

Date: Tuesday, September 8, 2009, 7:28 PM

 

Hello

Hello Patsy

Hello Barbara,

Thank you all for your sweet letters to me. I was so surprised to get them so

fast. Ok I will try and answer some questions for you. Yes I have had an ex-ray.

It looked a little like a small piece of bone was chipped off. My Doc gave me

oral prednisone. You know 60 mgs for 3 days then you cut back, etc. Because I

also have pain in my tendon he was afraid it could cause it to break if he gave

me a shot there. It got a little better for a short while and now it is back

where it was. There is a big knot on the rear of my heal. It is very red and it

really hurts. I also got a cortisone shot in my left shoulder. I can't lift it

up very much. It was only better for a few days as well. I think it could be

something wrong with my tendons??? I have reflux sometimes even though I

take my nexium. I always take another nexium if needed. I have not told my doc.

Thanks for wishing me a pain free day. Oh that would be a treat huh. I have doc

visit scheduled for

the 22nd. Hope I can last that long. , Patsy, and Barbara, please tell me

about your RA. How long you have had it etc. Mine started in my feet. I can

remember note being able to let the bed sheets touch my toes. Oh that was

terrible. Like I said I am a new member. I really have not had time to look at

this group very much. I will put my pic on here later. I'm 49 years old now.

Sometimes I feel 90. I hate walking in public with people and you just can't

keep up with them. I guess I will close for now. I can hardly wait to hear from

you all again. God Bless!!

Morehead City NC

[Guest guest]

Hi ,

A very warm welcome to the group. I too was a manager, a nurse/manager of a

nursing home and yes I remember those long hours so well.

I also have Plantar Fasc. Pity they can't replace our feet, I'd go for a pair

that didn't have toes going off in different directions lol. As Barbara has said

getting inserts for your shoes does help.

I can also identify with what you say about having more pain now than then, but

I think we have the capacity to get used to being in pain. Have you only ever

been on Humira or have you tried other Biologic meds? I'm on Enbrel but it has

stopped working, I was previously on Humira but that didn't do anything for me.

Look forward to hearing your input and getting to know you.

Best wishes

________________________________

From: rogertyndall <rogertyndall@...>

Sent: Tuesday, 8 September, 2009 18:43:35

Subject: [ ] new member

Hello everyone, I'm a new member here. I have had RA for 13 years now. I am no

stranger to the pain and suffering of this disease. I'm a manager where I work

and it gets hard to work the long hours of management. I am currently taking

Humira, steroids, celebrex, actinel and nexium. I have been on these

prescriptions for many years. It seems that I have more pain as time goes on. My

left heel always bothers me and I walk with a limp. I have also developed a

itchy reaction to something yet to be identified. It sometimes wakes me up at

night. Anyway I thought it would be nice to talk to others that have the same

problems that I do.

Thank you

Tyndall

[Guest guest]

It took years for me to understand that itch at night....For me it was

neuropathy.

Caused by celebrex/prednisone induced diabetes. Ask your physician to Try

gembentin...a miracle drug for me. I use to itch until I bled...no more.  I

needed to work up to the appropriate dose for me to dimiish side

effects...(fatigue)

Raniolo

From: rogertyndall <rogertyndall@...>

Subject: [ ] new member

Date: Tuesday, September 8, 2009, 1:43 PM

 

Hello everyone, I'm a new member here. I have had RA for 13 years now. I am no

stranger to the pain and suffering of this disease. I'm a manager where I work

and it gets hard to work the long hours of management. I am currently taking

Humira, steroids, celebrex, actinel and nexium. I have been on these

prescriptions for many years. It seems that I have more pain as time goes on. My

left heel always bothers me and I walk with a limp. I have also developed a

itchy reaction to something yet to be identified. It sometimes wakes me up at

night. Anyway I thought it would be nice to talk to others that have the same

problems that I do.

Thank you

Tyndall