(No subject)

[Guest guest]

-----Original Message-----

From: dm74550@... <dm74550@...>

< >

Date: Tuesday, August 21, 2001 4:00 PM

Subject: [] (no subject)

.

>>What symptoms exactly does she have? How old is she? A NCV/EMG test is what

is used most. Not all CMT types are identified yet by the DNA blood testing.

What problems first led you to take your daughter to see the Dr, who thinks it

is CMT? ~>Becky M.

Hello

Thanks again for your response to my inquiry. I will try to answer your

questions as best I can.

I don't believe I show signs of CMT although I haven't been fully checked as

of yet.

What kind of test do you recommend?

My husband is adopted therefore we do not have his history.

My daughter has been to 4 different doctors and the last doctor advised us to

see

a neuro-muscular specialist because he thought she was exhibiting signs of

this

form of disease and he mentioned CMT as his first thought.

thanks,

Diane

[Guest guest]

In a message dated 10/7/01 10:12:50 AM, Cla74@... writes:

<< Unsubscribe:

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[Guest guest]

thank ufor your help

[Guest guest]

Dr. Johanning is in albany, N.Y. You need to have

blood tests for ig and igg levels for molds.

botrus seems to be the one.

website: http://ntmc0.tripod.com

National Toxic Mold Coalition

--- postalman50@... wrote:

> can u tell me where to go for tests mold

> mildew i live in ny me

> and my wifegotsick for being expose to it

> regards elliott

>

__________________________________________________

[Guest guest]

Patty, thats terrible about Mia. Mia, if you are reading this, I am praying for you, and know exactly how you must be feeling, even if I am not experiencing your pain. I am also in my 20's and besides having auto immune diseases, I also had neurological problems, such as constant muscle twitching, dizzy spells, bells palsy (scary!) terrible migraines. That have all resolved themselves since explant three months ago. (the neurological stuff has resolved, I am working on the other stuff) If you would ever like a friend to talk to, feel free to call me anytime. 708 672 0469 I also have a great long distance program to call right back. I know all the GREAT girls here care very much for you, and are always here if you need us. Patty, I know I would like to do a fast also, but I have to correlate it with days that I can take it easy, and relax. The last time, I ended doing too much, and became quite hungry. I think the juice fast is a great idea, what juices would you use then, if the greens make both you & I ill? Like squash, carrots, plain lettuce, cucumbers, zuchinni? Do those have cytokines in them? Or just the leafy stuff? Oh, I forgot to tell you, I went to see my old doctor today as I need some cream for a rash I got on my palm, that is very itchy, and it turned out to be a reaction to something my skin became irrated with (I have been packing alot, and coming into contact with alot of boxes from my dads work) anyway, he went on to tell me he has about 16 clients that also have breast implants, and after I threw a fuss over needing a letter for explant to be covered last year , and demanded he him to look over about a days worth of studies, he looked into his other patients files, and found something to him as "'remarkable" . About 10 of them have auto immune diseases, alot of Thyroid, and are unusually quite young (like under 30!) And he went on to tell me that I am a remarkable woman,amoungst other things who realy knows my stuff!!!! And that he totally agree not to subject Tyler to any more shots at all, as his immune system may be supressed! He agreed! That made my day. We talked about an hour, and he was very interested in the whole process of explanting, detoxing, coverage, diseases, and so on. He said he will never again say there is no correlation to his patients , and actually told one of the girls about a women he knew who became ill recently (me) with out naming names!! I gave him the site to give to any woman with questions. And he wrote it down. So, thought I'd just share my day. Love,

[Guest guest]

But you know Patty, thats not all that bad. If you read "How I healed my Hashimtos" he also had levels like yours (my TPO was 1100-wow and the other one over 12,000!) and within a year, his numbers lowered back to normal, and he is hashimoto & thyroid med free!!! Make sure to incorporate refridgerated (esp powder form) probiotics daily, I do this stiff twice a day, as this helped his condition greatly. Thats the 1st thing Dr Kolb, as well as Dr. Mercola said I must have with this condition, well as Omege 3 (fish oil) which I am sure of all people, you are taking. I have a long, long way to go with my levels, my new TPO was still at 70, but thats better than 1100, I guess. But you realy don't with your levels, so maybe you will turn it around faster than you think. I say all things are possible! PS-Dr Kolb ran some blood work for Mycoplasma with Dr. Nicolsen, I should get them in soon, and we shall see if I will go on the Minocin treatment.

[Guest guest]

Hi ,

Sounds like you had a great day at the doctor's office! I am proud of you, and so happy to hear you have an opened minded doctor! Is that Dr. Mercola, or a different one? We defnitely need to know about doctors like him!

If I do a juice fast, (which I probably will) I will be doing things like carrot/apple, carrot/apple/beet (yechhh! Beet juice makes me want to gag! And I love beets!), celery/carrot/apple, tomato/celery/spinach/cucumber/green pepper.....mainly I will just keep out most of the green leafy stuff, with the exception of spinach--I think I'll throw that in there just to see what happens once or twice. I'm not too big on juicing lettuce anyway. Wheatgrass gives me brain fog right away, even though it is supposed to be so good for healing. It probably makes the cytokines go through the roof! My husband wants me to grow it again for him--he does really well on it, but I can't take it. I have a number of juicing books with all the recipes for a myriad combinations, so I will probably pick and choose from there and leave out the greens. I also am going to stay away from juicing too many fruits. You can get an awful lot of fructose in a glass of juice, and that's not such a good thing for us.

Thanks so much for writing to Mia. I hope she gets on her computer one of these days. I hope you guys can get connected, since you are close in age and going through the same things.

Thanks , I'll let you know when I decide to start my fast!

Patty

----- Original Message -----

From: JULIEJJPALANCA@...

Sent: Tuesday, January 07, 2003 2:51 PM

Subject: Re: (no subject)

Patty, thats terrible about Mia. Mia, if you are reading this, I am praying for you, and know exactly how you must be feeling, even if I am not experiencing your pain. I am also in my 20's and besides having auto immune diseases, I also had neurological problems, such as constant muscle twitching, dizzy spells, bells palsy (scary!) terrible migraines. That have all resolved themselves since explant three months ago. (the neurological stuff has resolved, I am working on the other stuff) If you would ever like a friend to talk to, feel free to call me anytime. 708 672 0469 I also have a great long distance program to call right back. I know all the GREAT girls here care very much for you, and are always here if you need us. Patty, I know I would like to do a fast also, but I have to correlate it with days that I can take it easy, and relax. The last time, I ended doing too much, and became quite hungry. I think the juice fast is a great idea, what juices would you use then, if the greens make both you & I ill? Like squash, carrots, plain lettuce, cucumbers, zuchinni? Do those have cytokines in them? Or just the leafy stuff? Oh, I forgot to tell you, I went to see my old doctor today as I need some cream for a rash I got on my palm, that is very itchy, and it turned out to be a reaction to something my skin became irrated with (I have been packing alot, and coming into contact with alot of boxes from my dads work) anyway, he went on to tell me he has about 16 clients that also have breast implants, and after I threw a fuss over needing a letter for explant to be covered last year , and demanded he him to look over about a days worth of studies, he looked into his other patients files, and found something to him as "'remarkable" . About 10 of them have auto immune diseases, alot of Thyroid, and are unusually quite young (like under 30!) And he went on to tell me that I am a remarkable woman,amoungst other things who realy knows my stuff!!!! And that he totally agree not to subject Tyler to any more shots at all, as his immune system may be supressed! He agreed! That made my d ay. We talked about an hour, and he was very interested in the whole process of explanting, detoxing, coverage, diseases, and so on. He said he will never again say there is no correlation to his patients , and actually told one of the girls about a women he knew who became ill recently (me) with out naming names!! I gave him the site to give to any woman with questions. And he wrote it down. So, thought I'd just share my day. Love,

[Guest guest]

Patty,

I did use those when I saw Dr Kolb, and would continue if I were near her. But I did read up on this alot, and found that Dr. Mercola's recommended "Flora Source" is the also very powerful, but as long as you take it carefully. It must be refridgerated, you have to drink a whole plain glass of water first on an empty stomach, and then mix the stated amount in bottled water , and drink a half hour before eating on an empty stomach . So, When I work out inthe morning, I simply have my whole glass of water during, and then afterwards as I prepare breakfast, I drink the remaining. When I run out, I will either get more of the powdered form, if I can't find Dr. Kolbs out here. After all I have read up on this, I think both are equally very good, probably the best out there.

[Guest guest]

I checked these out, and they appear to have the enteric coating to survive the stomach acids. So maybe the powder is not the best way to get probiotics, ? What are you using? I use the powder in enemas though.

Patty

----- Original Message -----

From: Dr.Kolb

Sent: Wednesday, January 08, 2003 3:53 AM

Subject: RE: (no subject)

I recommend probiotic pearls by Phytopharmica. .

[Guest guest]

Dr Kolb, I will have to reorder a bunch of these these (porbiotics) there is so much to remember, and sounds much easier than what I have doing since I ran out of your stuff! Thank you,

[Guest guest]

Kathy, you are right, it is Flora Source by GoldenHealth products, 2626 Kentucky Rd. Quincy, Il 62301 Their phone number listed is 800 780 1198, its the same stuff! Hope that helps. However, I may try to go back on Dr Kolbs recommended stuff, it its just as powerful,and easier to take! How are you feeling these days? Love,

[Guest guest]

If any of you CA Ladies know of a 'good' explanting PS in Southern Calf., would you please let us know ..... ASAP!

Martha Murdock, DirectorNational Silicone Implant Foundation | Dallas Headquarters"Supporting Survivors of Medical Implant Devices"4416 Willow LaneDallas, TX 75244-7537

----- Original Message ----- From: Goldsbarry@...

MAM-NSIF@...

Sent: Thursday, January 09, 2003 1:45 AM

Subject: (no subject)

Martha,Do you know of any good plastic surgeons in Southern California. My plastic surgeon is supposedly one of the best although she claims no acceptance of any problems with implants? So, I'm looking for a well informed ex-plant surgeon?Thank you,

[Guest guest]

Lori, I agree with Patty, they are undoubtably the best out there. I live in Illioinois, and traveled over 15 hours by car to see Dr Kolb, and if she may be the closer one for you, and are interested- I would say she was wonderful. I am delighted by her work on me, I love my real breasts now, and all the time and holistic care afterwards she has given me. She is very compassionate, as well as knowledgable about breast implant disease, probably the most out all of all doctors in the country. I needed that as I was very ill at the age of 27. Alot of detoxing, a great nutritional diet, and advise. And the girls here are great at info, esp Patty with detoxing, and wellness. You are on a great start here. if you ever have any questions, feel free to email me personally or otherwise. Take Care,

[Guest guest]

Get out of here, Patty I was wondering that realy, but I thought no way it is Patty, that would be too wierd! But it sounded so much like you. Did you ever get treatment? Or no? I found it on WWW.IMMED.ORG under questions on the bottom of the page -on the advise of Dr Kolb, and after finding out that I tested for Pneumonia IGG mycoplama as well as for all my viral problems recently. Great questions by the way, you summed them all up perfectly. Just like I would have asked.

[Guest guest]

I have a big bottle of ultra clear its rice based. I have been so allergic to everything lately I have been afraid to try it for the rice and the reaction I had to Nystatin that ended me up in ER.

Janet

[Guest guest]

"The illusion of freedom (in America) will continue as long as

it's profitable to continue the illusion. At the point where

the illusion becomes too expensive to maintain, they will just

take down the scenery, they will pull back the curtains, they

will move the tables and chairs out of the way and you will see

the brick wall at the back of the theater." -- Zappa {rocker}

[Guest guest]

I lost a baby working in a moldy basement in a Federal building. Your friend should stay out of that environment. The miscarriage happened right there at work.

Janet

[Guest guest]

I lost a baby working in a moldy basement in a Federal building. Your friend should stay out of that environment. The miscarriage happened right there at work.

Janet

[Guest guest]

I lost a baby working in a moldy basement in a Federal building. Your friend should stay out of that environment. The miscarriage happened right there at work.

Janet

[Guest guest]

Thank you for your support. I have to sign retiement papers today. Not what I wanted but I cant go into those buildings. I had been fighting to work from home but they said no.

Thanks again and God Bless you.

Janet

[Guest guest]

My last letter to the Portsmouth Naval Shipyard

Good day,All:

I wish I knew what to say that would touch your hearts and souls as this experience has touched mine. I have learned friends are not always real friends, that now I know Janet and I have "grown balls", that people can lie and cheat and get away with it.

While the sufferer lays in bed at times,alone,. unable to move and cries herself to sleep. Thinking she's a moldy leper who wants to die and no one wants to be around.

You wonder if there is a God and what He has in store. You lose friends, boyfriend, health and job. No one listens to you or fights for you.The man you thought loved you says he cannot handle my illness and throws me out.

You have all won. After Friday I am separated from the Portsmouth Naval Shipyard, where I started at age 16, mowing lawns.

You know, I know, we all know that basement made me this sick. I used to wade through the moldy water putting things on pallets.

For those who helped, I thank you if I do not know about it. The rest, I have to say I am disappointed and hurt. I am 39, alone and sick. I just wanted to work at home until I got better and come back to work. I loved my job and I did it well. In support of that, you are throwing me and everything I have away. What ever happened to help and compassion? Is the human aspect GONE from the government? Is what I have heard for years, that we are just a number really true?

I have asked help from, CO workers, bosses, supervisors and even Senators. No one wants to help. Just get rid of me.

Well, you may have won this round but I am not done by a long shot. Those of you that hurt me very much KNOW who you are. I don't need to name names. But when you go to sleep at night, say an extra prayer for me will you? Also treasure what you have. The next day it could be gone.

Jan s

[Guest guest]

I'm so sorry you "lost," but you "won" because you got out of there. That's the important thing. You did the best you could. Do you at least get unemployment benefits? You should be getting my other emails soon.

----- Original Message -----

From: Gingersnap1964@...

Sent: Wednesday, October 29, 2003 10:09 AM

Subject: [] (no subject)

Well guys,

I lost my year and a half fught. The Portsmouth Naval Shipyars is terminating me as of this Friday. I gave them a hell of a fight though. I refuse to go back into those moldy buildings.

JanetFAIR USE NOTICE:This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of environmental, political, human rights, economic, democracy, scientific, and social justice issues, etc. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use copyrighted material from this site for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner.

[Guest guest]

I am sorry to hear of this disgusting thing that has happened to you. I have a handyman who has come to help with things and he tells of an office building downtown filled with lawyers' offices - it is completely filled with mold (he's been asked to help with work on the problem) and the lawyers are all sick, but too afraid to leave their jobs. Your story will be repeated over and over. I hope that by exposing this, eventually, people will put a higher value on human life and health than they do on money.

I will fight as long as I have breath to tell the story for myself and others who are having to cope with this nightmare while being told that it is not so bad, what's so bad about a little mold, it's all in our heads, etc..

See, I haven't gone back to bed! Problem is, it makes me too mad. Oh well. I'm doing less than I was going to today, so I'll be more rested than I've been. Good luck with everything.

----- Original Message -----

From: Gingersnap1964@...

Sent: Wednesday, October 29, 2003 11:48 AM

Subject: Re: [] (no subject)

Thank you for your support. I have to sign retiement papers today. Not what I wanted but I cant go into those buildings. I had been fighting to work from home but they said no.

Thanks again and God Bless you.

JanetFAIR USE NOTICE:This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of environmental, political, human rights, economic, democracy, scientific, and social justice issues, etc. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use copyrighted material from this site for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner.

[Guest guest]

Look Cabbie I have communicated

directly with Dr. Lawrence as well okay. TYhere are other people who take

several things along with LDN because their respective doctors believe

attacking on all fronts gives them a better chance. It is not our place to tell

people they cannot take those drugs together. They are safe together and many

come just wondering if they CAN

take them together because not many know anything about LDN.

You can read my email to Jodygirl

again and see that I say some doctors feel they work in opposition to one

another… just as Dr. Lawrence says here and has said to me… (maybe

you don’t remember me posting my personal emails from Dr. Lawrence to

this group and the other LDN group but I did). And I don’t appreciate you

putting this in my face as though I haven’t read the same things before!

I’m sure you know how long I have been here and have read every single

post since I have arrived!

It is up to each of us to make our

own educated decisions. And for none of us to treat people badly if they choose

to not follow what Dr. Lawrence says but what they feel or their personal

doctors and they think.

LDN has not yet been studied and

so until it is we can’t say for certain that interactions with Rebif,

Avonex, Chemo based treatments, or Betaseron etc… are negative with LDN.

Don’t get me wrong here I believe what Dr. Lawrence has to say but I am

not going to make decisions for others I will tell them that it is alright to

take other medications with it IF THEY CHOOSE

TO!

Let me also add as you put this in

my face others put in my face that LDN is quackery… I don’t know

you personally I don’t know them personally… I formed my own decision

with everything I have seen and so should each and every other person

considering any treatment. Not have their doctor make up their minds for them

and follow blindly not have a group

make up their minds for them either! Get all the facts and make their own!

Got it? Good. Now thank you for

thinking you are educating me further than I have been but you are not.

From: Cabbie54@...

[mailto:Cabbie54@...]

Sent: Tuesday, January 06, 2004

12:41 PM

lvlail_lvle@...

Subject: (no subject)

This is what Dr. Lawrence said about the immune suppressants and ldn

together...

Dear Carol,

I will be more affirmative than Dr Bihari and tell you that it is a

complete waste of time taking LDN if you continue to take Rebif, or any other

immune suppressants. The two treatments are simply working in

opposition. It is a little like adding ice to a heated kettle that you

are trying to boil. It will get you no-where!

If you intend making a serious attempt to adopt this treatment (the

LDN) you must stop all the immune suppressant drugs first.

I am not surprised that you suffered headaches and depression with this

combined therapy. Your body must have been in such a state of conflict I

imagine almost anything could have happened. It is sure that you were

getting no benefit from either therapy!

We must also consider the possible effects on your blood

pressure. What was your blood pressure before and after the Cozaar. Was

your blood pressure checked when you had the headache? What was the

pressure then? Do you have your own sphygmomanometer to check it

yourself?

There is no hard and fast rule to determine the time that you should be

off the interferon. Two weeks is sufficient to get the drugs out of your

system but your immune system may still be in a state of suppression. It

is similar, but worse, with steroids. After steroids, it may take months

to recover from the adrenal and immune suppression resulting from these

dangerous and, as far as MS is concerned, useless drugs.

Starting LDN after using immune suppressants is going to be an

unpredictable process under any circumstances. All that I do in

such a situation is simply monitor the patients response to the LDN, each

day if necessary, and offer the most appropriate advice in answer to the response

prevelent at that time. It can be a slow, arduous, traumatic, and

time-consuming process. Having started on the wrong foot (the interferon)

you must be prepared to fight your way back to a more productive and beneficial

method of therapy.

The headaches may actually be a sign of a beneficial response,

when there is an increase in cerebral blood circulation. Until your body

adjusts to this new internal environment you should take nothing more than

paracetamol (acetaminophen), or low-dose ibuprofen, at a minimal

dose. Similar headaches are seen to occur in response to vitamin E, zinc,

EFAs, or even HBO. These are all clearly beneficial in MS.

Your diet I would consider a little questionable. As a routine I

would not advise bread, eggs, or coffee (or is it de-caff?).

The list of supplements I recommend are listed in the

attachments. Zinc and the EFAs are the most important. I have

remained stable for the last 15 years on this regime with minimal rate of

progression and no relapses. Since starting the LDN I have now slowly

begun to improve, although after having MS for 26 years I still have a long way

to go.

Having used, and prescribed LDN, for almost two years it has become

obvious that the method is far more complicated than I had initially

envisaged. With time, a little thought, and sometimes more than a

little moral support, most people find the method greatly beneficial. The

drop-out rate is presently only about 2%, which is a lot better than beta

interferon!

With kind regards,

Bob Lawrence

[Guest guest]

The Treatment of Neuro-muscular Spasm in Multiple Sclerosis

One of the most common symptoms occurring in MS is neuro-muscular spasm.

This troublesome symptom may be of two types, either tonic or clonic spasm.

Tonic spasm is when the resting muscle tone is abnormally increased. This is often simply apparent as stiffness, when the limb appears rigid and difficult to move despite the absence of absolute paralysis.

Clonic spasm: this is perhaps the most distressing of the two forms as the affected limb or muscle may jerk violently without warning, causing the individual to lose balance and perhaps fall.

The conventional means of treating these symptoms is with drugs including such as Baclofen or Zanaflex. The main penalty of the use of these drugs is the side-effect of sometimes extreme muscle weakness. Zanaflex is also quite toxic and can cause liver damage with the sustained use of high doses.

Other methods, utilising nutritional supplements are also available.

Although these are often less reliable and unpredictable and, it must be admitted, sometimes totally ineffective, they are harmless, and may be taken, at the advised doses, without risk or penalty.

Calcium and Magnesium: These minerals are both essential to the normal function of muscles, not only in providing the function of muscle contraction but also in maintaining an appropriate level of muscle tone during periods of relaxation. The occurrence of muscle cramp, due to spasm, is well known to be associated with calcium deficiency.

The normal therapeutic daily dose is, at least, calcium 1000mg and magnesium 500 mg. These are best taken at night because calcium levels tend to fall most significantly during sleep when muscle cramp is most likely to occur.

Gamma amino butyric acid (GABA): is a natural amino acid, which, at therapeutic doses, is able to stimulate the production of growth hormone. Growth hormone is normally produced throughout life and is necessary for any process of regeneration and repair.

When first tested it was anticipated that this would stimulate the regeneration of myelin. This may well be so but so far, the process remains unproved.

Its use however was found, in some, to dramatically reduce the incidence of pain and spasm, thus improving mobility and increasing comfort at rest.

Threonine: an amino acid, which, it is suggested, may reduce spasm in some individuals. The necessary dose is one gramme taken twice daily. Amino acids must be taken on an empty stomach for maximal benefit.

Niacin (Vitamin B3); This vitamin is also found to be effective in some individuals. The necessary dose is 500 mg taken three times daily with food. It must be taken with a daily dose of vitamin B complex to be fully effective.

Vitamin B complex is considered to be an essential routine vitamin for use in the treatment of MS.

Niacin may cause uncomfortable skin flushing in some individuals. A non-flush preparation is however available but is more expensive than the basic vitamin.

Methyl-sulphonyl-methane (MSM): a natural sulphur-containing compound, commonly used in the treatment of arthritis, when it is effective in facilitating the regeneration of joint cartilage and other connective tissues of the body.

In MS, it is suggested to be effective in restoring the integrity of the blood-brain barrier, thus reducing the invasion of CD4 T-cells into the brain and diminishing the process of auto-immune attack.

The substance also appears to be effective in reducing the incidence of muscle spasm. The appropriate dose is one or two grammes each day.

Anthocyanidins: taken in sufficient dosage (approximately 250 mg/ day, or more) these too appear to be helpful in reducing muscle spasm and so restoring mobility.

Registered Office:- Dietary Research Limited, 10 Heol Gerrig, Treboeth, Swansea, SA5 9BP