New Member

[Guest guest]

Join the Group TXLyme to talk to Texans about the tiny amount of

choices in docs for treatments. There are a few naturopaths, but no

LLMD's is what I see posted there. Teeth-clenching has been described

as being from Bartonella or from worms. We all have Bartonella here,

and no teeth-clenching, so not everyone gets this symptom.

Love and prayers,

Heidi N

I was symptom free but now, the fatigue, heaviness, teeth clenching,

musculoskeletal, and cognitive function issues are back. I'd love to

find a naturopath or herbalist in my state, Texas. Any suggestions or

recommendations are deeply appreciated.

Thank you and healing wishes,

[Guest guest]

Hi ,

I really couldn't say what most people do, I've only been in this group for a

couple of months. But, I can speak for myself. I've always treated myself and

until getting Lyme I hadn't been to the doctor in 17 years. I'm still doing a

lot of reasearch and trying things on my own, but this is such a serious problem

that I feel it's really important to have a doctor who is experienced with

treating Lyme at least watching over my treatment. There's just so much to know

and I feel better knowing I have someone I who can help guide me in the right

direction and keep me from harming myself. And I can't prescribe hormones or

other drugs, tests, or treatments that I might need. And in my case I need a

doctor to fill out forms for work and disability. The first doctor I was seeing

was a 3 1/2 hour drive each way. But, he got me diagnosed and started me on

hormones, antibiotics, and herbs so that I was able to get back to work. It's

been very expensive as my medical insurance won't cover any of my treatment.

I've had to ask for help from family and friends. We sold one of our cars and

have depleted what small savings we did have (I'm sure I'm not alone in this

experience) but I figure it's an investment in my future.

Good luck! I believe you can type in " find a LLMD or Lyme doctor " in google and

get some help that way.

Best,

Connie

Re: [ ] New Member

Thank you for the reply and information, Connie. I'll be sure to look into

the book you suggested. From your experience in witnessing people's

journeys, what do most people do when they can't find a doctor? Do they

self treat?

[Guest guest]

There is a also a free lyme resource CD you can download from my website

below or have mailed to you at no charge. Lots of information on what people

are doing to treat their Chronic Lyme disease.

www.lyme-resource.com

You can lead a person to a fact, but you can't make them think! -

> [ ] New Member

> >

> > Hello all,

> >

> > I'm new to this group and Buhner's protocol. I have yet to read his

> > book but plan to do so soon. I'm curious to know how most of you

> > receive treatment. If you don't have a doctor in your area and are

> > unable to make a trip to see one, what do you do? Do you

> self-treat?

> > I'm at a lose for where to go at this point in my journey. I've

> > received western and eastern medicine treatment. From the latter, I

> > received the most improvement. For about four months, I was symptom

> > free but now, the fatigue, heaviness, teeth clenching,

> > musculoskeletal, and cognitive function issues are back.

> I'd love to

> > find a naturopath or herbalist in my state, Texas. Any

> suggestions or recommendations are deeply appreciated.

> >

> > Thank you and healing wishes,

> >

> >

> >

> >

[Guest guest]

Hi ,

There is a HUGE improvement since I started treatment! I was going to the

emergency room often for heart attack symptoms and I couldn't stand or sit up

for more than 15 minutes at a time without my pulse jumping up to 100 - 120 and

my blood pressure either dropping or rising. It was horrible. This was back in

March (this year). Once I got on some hormones and two weeks of Doxy my symptoms

started getting much better and I was able to go back to work, six hours a day,

around mid June. I'm still working six hour days and I imagine I will for quite

a while yet. The healing is much slower now, but still progressing.

My doctor started me on Samento, Burbur, Banderol, alternating with Cumanda

(from the Cowden protocol). I have tried a lot of the Buhner herbs, but I

tolerate the tinctures from the Cowden protocol better (easier on my gut). I

don't take anywhere near the suggested dose on any of the herbs. A little goes a

long way with me. I can recommend Hawthorn if you have heart complications. It

has helped me a lot. And I just started taking Arteminisinin and got a huge

Herx. I'm sure I must have Babesa even though my test was negative.

I have about 25 bottles on my kitchen table that I get into every day. But, I

started out very slowly added one new thing a week so I could tell if it helped

or hurt. I also get Reiki treatments once a month, which make me herx as well!

I believe there are so many ways back to health and the most important one is to

open up to the process and to open up your heart to everything you are feeling

and begin to let go of it all.

Best,

Connie

Re: [ ] New Member

Thank you for taking the time to reply to my posting, Connie! And thank you for

sharing what you're going through. It's a helpful reminder that we're not alone

in this battle. I agree with you that this disease is a serious problem and

it's best to have a doctor watch over treatment. How is your treatment going?

Are you seeing any relief?

I wish you much success in your journey.

Healing wishes,

On Sun, Sep 5, 2010 at 1:32 PM, Connie Blaze <connieblaz@...> wrote:

Hi ,

I really couldn't say what most people do, I've only been in this group for a

couple of months. But, I can speak for myself. I've always treated myself and

until getting Lyme I hadn't been to the doctor in 17 years. I'm still doing a

lot of reasearch and trying things on my own, but this is such a serious problem

that I feel it's really important to have a doctor who is experienced with

treating Lyme at least watching over my treatment. There's just so much to know

and I feel better knowing I have someone I who can help guide me in the right

direction and keep me from harming myself. And I can't prescribe hormones or

other drugs, tests, or treatments that I might need. And in my case I need a

doctor to fill out forms for work and disability. The first doctor I was seeing

was a 3 1/2 hour drive each way. But, he got me diagnosed and started me on

hormones, antibiotics, and herbs so that I was able to get back to work. It's

been very expensive as my medical insurance won't cover any of my treatment.

I've had to ask for help from family and friends. We sold one of our cars and

have depleted what small savings we did have (I'm sure I'm not alone in this

experience) but I figure it's an investment in my future.

Good luck! I believe you can type in " find a LLMD or Lyme doctor " in google and

get some help that way.

Best,

Connie

3bgm5d

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

..

[Guest guest]

Well, I'll try on more time. I wrote to the group and the moderator but my posts are not going through. I'd like to be able to chat with others about the implants. I am a silicone survivor.

There would be nothing to frighten you if you refused to be afraid. Gandhi

[Guest guest]

,

You should see your messages on our group going through. You can just write to

the group address, the messages will post, and hopefully others will jump in

and respond.

I hope you are doing OK...any specific symptoms that are overwhelming right now?

Patty

>

>

> Well, I'll try on more time. I wrote to the group and the moderator but my

> posts are not going through. I'd like to be able to chat with others about the

> implants. I am a  silicone survivor.

>  

>

>  

> There would be nothing to frighten you if you refused to be afraid. Gandhi

>

[Guest guest]

Hi .

Please explain.If you want reply to me personally..

>

>

> Well, I'll try on more time. I wrote to the group and the moderator but my

> posts are not going through. I'd like to be able to chat with others about the

> implants. I am a  silicone survivor.

>  

>

>  

> There would be nothing to frighten you if you refused to be afraid. Gandhi

>

[Guest guest]

Hi Patty (thank you) and Everyone,

I never saw my intro post come through the first time so I'll just start from here . I'm in my 50's and a silicone survivor. I had the implants for 9 years. They leaked into my system very badly.. I went to docs of course no one put it together till close to the removal time which was 1994. All the while my immune system was breaking down from allergies to fibromyalgia, migraines to neurological problems. I developed what was also diagnosed as Multiple Chemical Sensitivity (MCS). So today I live with the MCS, a pretty secluded life and developed IBD (Inflammatory Bowel Disease) in the last few years. Mostly, I'm unable to tolerate conventional medicine to heal myself, so I work with alternative physicians.

I would just like to connect with others on this list who can relate to my situation.. and possibly we can learn things from each other. Right now I'm focusing on the IBD because I recently went into a nasty relapse. I'm trying to be a "good sport" and go about my responsibilities and not feel "defeated"...as well as have hope. I had a seven month remission previously..which took me two years to get to. I was very excited about that. It was very rough coming down off the steroids the first time.and I mean rough... (yes I am managing to take them even with the side effects). Just this past week, my doctor had to push me up again because of this relapse. I am also using a Vit E Protocol which helped me the last time, so with some luck I'll get through this again. That's what I'm hoping for but it's a scary thing.

Does anyone on the list have IBD and if so how about MCS?

There would be nothing to frighten you if you refused to be afraid. Gandhi

From: glory2glory1401 <glory2glory1401@...> Sent: Sat, September 11, 2010 4:58:55 PMSubject: Re: New Member

,You should see your messages on our group going through. You can just write to the group address, the messages will post, and hopefully others will jump in and respond.I hope you are doing OK...any specific symptoms that are overwhelming right now?Patty

[Guest guest]

Hi, I was just wondering what are the symtoms of MCS?

From: Natural Medicine <natmedgal@...> Sent: Sat, September 11, 2010 5:13:03 PMSubject: Re: Re: New Member

Hi Patty (thank you) and Everyone,

I never saw my intro post come through the first time so I'll just start from here . I'm in my 50's and a silicone survivor. I had the implants for 9 years. They leaked into my system very badly.. I went to docs of course no one put it together till close to the removal time which was 1994. All the while my immune system was breaking down from allergies to fibromyalgia, migraines to neurological problems. I developed what was also diagnosed as Multiple Chemical Sensitivity (MCS). So today I live with the MCS, a pretty secluded life and developed IBD (Inflammatory Bowel Disease) in the last few years. Mostly, I'm unable to tolerate conventional medicine to heal myself, so I work with alternative physicians.

I would just like to connect with others on this list who can relate to my situation.. and possibly we can learn things from each other. Right now I'm focusing on the IBD because I recently went into a nasty relapse. I'm trying to be a "good sport" and go about my responsibilities and not feel "defeated"...as well as have hope. I had a seven month remission previously..which took me two years to get to. I was very excited about that. It was very rough coming down off the steroids the first time.and I mean rough... (yes I am managing to take them even with the side effects). Just this past week, my doctor had to push me up again because of this relapse. I am also using a Vit E Protocol which helped me the last time, so with some luck I'll get through this again. That's what I'm hoping for but it's a scary thing.

Does anyone on the list have IBD and if so how about MCS?

There would be nothing to frighten you if you refused to be afraid. Gandhi

From: glory2glory1401 <glory2glory1401@...> Sent: Sat, September 11, 2010 4:58:55 PMSubject: Re: New Member

,You should see your messages on our group going through. You can just write to the group address, the messages will post, and hopefully others will jump in and respond.I hope you are doing OK...any specific symptoms that are overwhelming right now?Patty

[Guest guest]

With Implanted persons, you have an implant permeating inside of your body that is a continual feed of toxins.......when your body becomes overwhelmed you begin to have symptoms.......It is all based on the hits to your immune system and genetics. I wish all persons getting implants would have hla typing so they would know what they could be up against...

and educate themselves. I have found that constantly helping and working at detoxing my system naturally with foods, as well as putting in the good guys every single day is helping assist my body to function. I have been persistant for 4 years now, and it is helping me keep my head above

water, per se...I rarely eat out, and I make and drink kefir every single day as well as eat yogart often. I eat lots of raw veges, dailey and drink fruit smoothies often too....

Support your body with what it needs so it can do the work....just remember it takes a long time, but it can happen.....

Detoxing from implants is an individual thing, but you just need to

find what works...as your body is freed, the mcs will get better.....

There is lots of info in the archives for detoxing and such....

Hugs to all ~

Dede

http://www.ei-resource.org/illness-information/environmental-illnesses/multiple-chemical-sensitivity-(mcs)/

Multiple Chemical Sensitivity (MCS)

An Overview

Multiple Chemical Sensitivity is the name given to a syndrome in which a sufferer experiences multiple symptoms upon exposure to minute amounts of everyday chemicals. There is currently no officially recognized definition for Multiple Chemical Sensitivity. This is due to the fact that very little is known about it, especially the mechanisms involved with the onset of symptoms. Leading theories suggest a possible role for a hypersensitive central nervous system, immune dysfunction and impaired detoxification by liver enzymes. Some medical professionals, and even organizations, continue to insist that the syndrome is psychological in origin, even in the face of a growing amount of evidence from studies that show clear abnormalities in people with MCS on exposure to normally safe levels of chemicals. Through 1999 there were a total of 618 scientific articles, editorials, books, book chapters and reports relating to MCS. Of these, 308 supported an organic/physiological basis for symptoms whereas only 137 supported a psychological interpretation. (Source: www.mcsrr.org).

Although there is no definition universally accepted by the established medical institutions, Multiple Chemical Sensitivity experts (Bartha et al 1999) have come to a consensus on the criteria for diagnosis, and thus far these criteria remain unrefuted in the published literature. These criteria are as follows:

The symptoms are reproducible with [repeated chemical] exposure. The condition is chronic. Low levels of exposure [lower than previously or commonly tolerated] result in manifestations of the syndrome. The symptoms improve or resolve when the incitants are removed. Responses occur to multiple chemically unrelated substances. Symptoms involve multiple organ systems [Added in 1999].

It's reasonable to expect that these criteria will be officially adopted in a form very close to the above in the relatively near future.

To complicate matters, however, a number of influential medical institutions, such as the American Academy of Allergy Asthma and Immunology (AAAAI), have renamed the illness as 'Idiopathic Environmental Intolerance' (IEI). They cite the reason for this to be the fact that no immune system involvement has been proven thus far and since "sensitivity" in medical jargon technically refers to an immune reaction, they deem MCS to be inaccurate. For the general population "sensitivity" and "intolerance" generally mean the same thing and MCS is so well known that most people are sticking with this name for now.

Symptoms

Many MCS sufferers can trace the start of their illness to an acute exposure to highly toxic chemicals (Gulf War veterans, and farmers using pesticides for example). For other sufferers the illness develops over a long period of time most likely involving chronic low level exposure to chemical substances. Although MCS can occur on its own, a large number of sufferers also suffer from CFS, Fibromyalgia and other related disorders. This obviously points to the possibility that all these illnesses are part of the same underlying process and likely have common causes.

MCS is a chronic condition with the patient usually experiencing some level of unwellness all the time. However, patients have an acute reaction when exposed to minute amounts of the chemicals to which they are sensitive. Often the level of a chemical that triggers a reaction may be so low that the sufferer can't even smell it.

Common symptoms of MCS upon exposure:

Fatigue Headaches Disorientation Dizziness and Faintness Flu-like symptoms Nausea Irregular or Rapid Heartbeat Muscle and Joint Pain Gastrointestinal problems Mood Disturbances - Depression/Anxiety/Irritability Short-term Memory Problems Asthma/Breathing Problems Rashes

Most sufferers have a distinct reaction upon every exposure. It is common to first experience dizziness, disorientation, rapid heartbeat and mood changes followed by flu-like illness and muscle/joint aches. In severe cases, the flu-like illness and aching can persist for days.

When the power of love

overcomes the love of power

the world will know peace.

~ Jimi Hendrix

Re: New Member

,

You should see your messages on our group going through. You can just write to the group address, the messages will post, and hopefully others will jump in and respond.

I hope you are doing OK...any specific symptoms that are overwhelming right now?

Patty

[Guest guest]

Hi Dede,

I have found also that detoxifying is essential. I wouldn't have made it this far without that part of my protocol. With MCS it's just part of the lifestyle once you've become educated in the "MCS staying alive mode". In my case, my body did become overwhelmed and that flared up the IBD.. no question. I hope I can get it back under control, big goal there.

There would be nothing to frighten you if you refused to be afraid. Gandhi

From: "DGRAHAMA@..." <DGRAHAMA@...> Sent: Sat, September 11, 2010 9:06:22 PMSubject: Re: Re: New Member

With Implanted persons, you have an implant permeating inside of your body that is a continual feed of toxins.......when your body becomes overwhelmed you begin to have symptoms.......It is all based on the hits to your immune system and genetics. I wish all persons getting implants would have hla typing so they would know what they could be up against...

and educate themselves. I have found that constantly helping and working at detoxing my system naturally with foods, as well as putting in the good guys every single day is helping assist my body to function. I have been persistant for 4 years now, and it is helping me keep my head above

water, per se...I rarely eat out, and I make and drink kefir every single day as well as eat yogart often. I eat lots of raw veges, dailey and drink fruit smoothies often too....

Support your body with what it needs so it can do the work....just remember it takes a long time, but it can happen.....

Detoxing from implants is an individual thing, but you just need to

find what works...as your body is freed, the mcs will get better.....

There is lots of info in the archives for detoxing and such....

Hugs to all ~

Dede

http://www.ei-resource.org/illness-information/environmental-illnesses/multiple-chemical-sensitivity-(mcs)/

Multiple Chemical Sensitivity (MCS)

An Overview

Multiple Chemical Sensitivity is the name given to a syndrome in which a sufferer experiences multiple symptoms upon exposure to minute amounts of everyday chemicals. There is currently no officially recognized definition for Multiple Chemical Sensitivity. This is due to the fact that very little is known about it, especially the mechanisms involved with the onset of symptoms. Leading theories suggest a possible role for a hypersensitive central nervous system, immune dysfunction and impaired detoxification by liver enzymes. Some medical professionals, and even organizations, continue to insist that the

syndrome is psychological in origin, even in the face of a growing amount of evidence from studies that show clear abnormalities in people with MCS on exposure to normally safe levels of chemicals. Through 1999 there were a total of 618 scientific articles, editorials, books, book chapters and reports relating to MCS. Of these, 308 supported an organic/physiological basis for symptoms whereas only 137 supported a psychological interpretation. (Source: www.mcsrr.org).

Although there is no definition universally accepted by the established medical institutions, Multiple Chemical Sensitivity experts (Bartha et al 1999) have come to a consensus on the criteria for diagnosis, and thus far these criteria remain unrefuted in the published literature. These criteria are as follows:

The symptoms are reproducible with [repeated chemical] exposure. The condition is chronic. Low levels of exposure [lower than previously or commonly tolerated] result in manifestations of the syndrome. The symptoms improve or resolve when the incitants are removed. Responses occur to multiple chemically unrelated substances. Symptoms involve multiple organ systems [Added in 1999].

It's reasonable to expect that these criteria will be officially adopted in a form very close to the above in the relatively near future.

To complicate matters, however, a number of influential medical institutions, such as the American Academy of Allergy Asthma and Immunology (AAAAI), have renamed the illness as 'Idiopathic Environmental Intolerance' (IEI). They cite the reason for this to be the fact that no immune system involvement has been proven thus far and since "sensitivity" in medical jargon technically refers to an immune reaction, they deem MCS to be inaccurate. For the general population "sensitivity" and "intolerance" generally mean the same thing and MCS is so well known that most people are sticking with this name for now.

Symptoms

Many MCS sufferers can trace the start of their illness to an acute exposure to highly toxic chemicals (Gulf War veterans, and farmers using pesticides for example). For other sufferers the illness develops over a long period of time most likely involving chronic low level exposure to chemical substances. Although MCS can occur on its own, a large number of sufferers also suffer from CFS, Fibromyalgia and other related disorders. This obviously points to the possibility that all these illnesses are part of the same underlying process and likely have common causes.

MCS is a chronic condition with the patient usually experiencing some level of unwellness all the time. However, patients have an acute reaction when exposed to minute amounts of the chemicals to which they are sensitive. Often the level of a chemical that triggers a reaction may be so low that the sufferer can't even smell it.

Common symptoms of MCS upon exposure:

Fatigue Headaches Disorientation Dizziness and Faintness Flu-like symptoms Nausea Irregular or Rapid Heartbeat Muscle and Joint Pain Gastrointestinal problems Mood Disturbances - Depression/Anxiety/Irritability Short-term Memory Problems Asthma/Breathing Problems Rashes

Most sufferers have a distinct reaction upon every exposure. It is common to first experience dizziness, disorientation, rapid heartbeat and mood changes followed by flu-like illness and muscle/joint aches. In severe cases, the flu-like illness and aching can persist for days.

When the power of love

overcomes the love of power the world will know peace.

~ Jimi Hendrix

Re: New Member

,You should see your messages on our group going through. You can just write to the group address, the messages will post, and hopefully others will jump in and respond.I hope you are doing OK...any specific symptoms that are overwhelming right now?Patty

[Guest guest]

Oh, :

Honey, you sound just like me, because my badly ruptured silicone breast implants were removed in 1993. I have all of the same symptoms, and it can be frightening. Do you have any rectal bleeding, because I have. We have to be so careful about how we take care of ourselves.

I have had severe respiratory problems, and an enlarged heart; however, I am getting better. It can takes so many years to get well, and I wonder sometimes if we will ever get completely well. I am positive for MGUS, and my doctors are doing tests this week to make sure that it is still Smoldering Myeloma. Tomorrow I will be collecting urine for 24 hours (UPEP, and then I will have the blood work done at the same time (SPEP). Each time that they test me I always worry, but we must try to stay positive

[Guest guest]



Darling Dede:

Thank you for all of this information, and we all pray that you will get well. Honey, when did you move from your home, because the last that we heard, you were still in the home where you had to mow the lawns? We are sorry that you are in a flooded area, and please stay safe. We are still renovating our new/old home, because we could not stand the condo living. This home has two decks and a double garage..and a yard that is so beautiful. I am able to do some gardening again, but I cannot do very much.

Honey, we have a "big deck" off our bedroom....remember how much you made us laugh when we were building our deck in one of our other homes?

Sending love and hope to you always....Lea and Superman

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`````

Re: New Member

,You should see your messages on our group going through. You can just write to the group address, the messages will post, and hopefully others will jump in and respond.I hope you are doing OK...any specific symptoms that are overwhelming right now?Patty

[Guest guest]

Hello Sweet Lea ~

Oh, I havent moved......Ive been here since 97.....same home !

I was fortunate I had no flooding, but there was all around me..

I havent been with the group a whole lot since my heart surgery

end of April.....it has been one thing after another .......

After that I had another nook stress test and they found new

scarring on the back of my heart, then that led to a sleep

study, then another, then pulmonary function tests, and

CT of the lungs....all those nodules are still stable, yeah, but

I now have significant COPD, and my lungs dont expand

well, and I also have significant sleep apnea, but it is from

my lungs colapsing, not my esophagus or nasal passages.

I had no clue cuz I dont snore, or ever wake up gasping

for air...I also have episodes of hypopnea where the breathing

is so shallow, I almost just stop breathing....They say I must

wear the c-pap anytime I sleep....Recently I was put

on inhalers that also have ......STEROIDS in them.......but

was told I need them to keep things from getting worse.

I still am up about 4-7 times a night...now I just have to

mess with the machine and mask every time.....but....I have

to say, I dont have anywhere near the headaches.....and

with the c-pap on, I can deep breathe, it is on rather high

so it really blows it all open, ha ha......

Soooooo, I not only have BI's in....I also have a heart device

with 3 wires into 3 chambers of my heart to run it, and

I have a c-pap with mask I wear on one side of the bed and

a heart monitor machine on the other side of the bed that

monitors my heart every night while I am asleep........

What a mess.....but....I am alive, and have good times too,

usually every single day now... My pain level isnt as bad

as it was, and the way I eat and the kefir I make and drink

every single day is paying off....I have been

around people and not gotten deathly ill.....whoo hoo !

Much Love to all.....

Dede

When the power of love

overcomes the love of power

the world will know peace.

~ Jimi Hendrix

Re: Re: New Member

 Darling Dede:

Thank you for all of this information, and we all pray that you will get well. Honey, when did you move from your home, because the last that we heard, you were still in the home where you had to mow the lawns? We are sorry that you are in a flooded area, and please stay safe. We are still renovating our new/old home, because we could not stand the condo living. This home has two decks and a double garage..and a yard that is so beautiful. I am able to do some gardening again, but I cannot do very much.

Honey, we have a "big deck" off our bedroom....remember how much you made us laugh when we were building our deck in one of our other homes?

Sending love and hope to you always....Lea and Superman

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`````

Re: New Member

,

You should see your messages on our group going through. You can just write to the group address, the messages will post, and hopefully others will jump in and respond.

I hope you are doing OK...any specific symptoms that are overwhelming right now?

Patty

[Guest guest]

Lea,

I am really sorry to hear of your rectal bleeding! Oh my, what is up with that?

Is that a new symptom?

Please update us on your test results.

Yes, you must stay positive. I just really wish that you could have the surgery

you need to remove all of the residual silicone stuff. Is there any change on

that?

So glad you are off the prednisone and other drug.

You live in a such a beautiful place...enjoy every precious day outside that you

can and be thankful...it takes away stress so well when we are thankful for what

we have right now.

Love you Lea,

Patty

>

> Oh, :

>

> Honey, you sound just like me, because my badly ruptured silicone breast

implants were removed in 1993. I have all of the same symptoms, and it can be

frightening. Do you have any rectal bleeding, because I have. We have to be so

careful about how we take care of ourselves.

>

> I have had severe respiratory problems, and an enlarged heart; however, I am

getting better. It can takes so many years to get well, and I wonder sometimes

if we will ever get completely well. I am positive for MGUS, and my doctors are

doing tests this week to make sure that it is still Smoldering Myeloma. Tomorrow

I will be collecting urine for 24 hours (UPEP, and then I will have the blood

work done at the same time (SPEP). Each time that they test me I always worry,

but we must try to stay positive.

>

> Stress is very bad for us, because it takes away our strength to fight off

infections. I make sure that I rest each day, and that for me gives me a better

quality of life. No more Decadron or Prednisone for me, but it helped save my

life years ago. A few days ago I could smell everything possible, and I knew

that I was having a flare from having my teeth cleaned.

>

> " It is not how we weather the Storm, but how we Dance in the Rain. "

>

> Take care dear one...always...Lea

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``

> Re: New Member

>

>

>

> ,

> You should see your messages on our group going through. You can just write

to the group address, the messages will post, and hopefully others will jump in

and respond.

>

> I hope you are doing OK...any specific symptoms that are overwhelming right

now?

> Patty

>

[Guest guest]

Dede,

I am just praying that you will be through this mess very soon so you can get

those implants out! I can't imagine living with those inside, knowing what they

are doing.

But your healing so far has been a miracle....

I'm thankful for you...

Be blessed, dear lady,

Patty

>

>

> Hello Sweet Lea ~

> Oh, I havent moved......Ive been here since 97.....same home !

> I was fortunate I had no flooding, but there was all around me..

> I havent been with the group a whole lot since my heart surgery

> end of April.....it has been one thing after another .......

> After that I had another nook stress test and they found new

> scarring on the back of my heart, then that led to a sleep

> study, then another, then pulmonary function tests, and

> CT of the lungs....all those nodules are still stable, yeah, but

> I now have significant COPD, and my lungs dont expand

> well, and I also have significant sleep apnea, but it is from

> my lungs colapsing, not my esophagus or nasal passages.

> I had no clue cuz I dont snore, or ever wake up gasping

> for air...I also have episodes of hypopnea where the breathing

> is so shallow, I almost just stop breathing....They say I must

> wear the c-pap anytime I sleep....Recently I was put

> on inhalers that also have ......STEROIDS in them.......but

> was told I need them to keep things from getting worse.

> I still am up about 4-7 times a night...now I just have to

> mess with the machine and mask every time.....but....I have

> to say, I dont have anywhere near the headaches.....and

> with the c-pap on, I can deep breathe, it is on rather high

> so it really blows it all open, ha ha......

> Soooooo, I not only have BI's in....I also have a heart device

> with 3 wires into 3 chambers of my heart to run it, and

> I have a c-pap with mask I wear on one side of the bed and

> a heart monitor machine on the other side of the bed that

> monitors my heart every night while I am asleep........

> What a mess.....but....I am alive, and have good times too,

> usually every single day now... My pain level isnt as bad

> as it was, and the way I eat and the kefir I make and drink

> every single day is paying off....I have been

> around people and not gotten deathly ill.....whoo hoo !

> Much Love to all.....

> Dede

>

>

>

> When the power of love

> overcomes the love of power

> the world will know peace.

> ~ Jimi Hendrix

>

>

>

> Re: Re: New Member

>

>

>

>

> 

> Darling Dede:

>

> Thank you for all of this information, and we all pray that you will get well.

Honey, when did you move from your home, because the last that we heard, you

were still in the home where you had to mow the lawns? We are sorry that you are

in a flooded area, and please stay safe. We are still renovating our new/old

home, because we could not stand the condo living. This home has two decks and a

double garage..and a yard that is so beautiful. I am able to do some gardening

again, but I cannot do very much.

>

> Honey, we have a " big deck " off our bedroom....remember how much you made us

laugh when we were building our deck in one of our other homes?

>

> Sending love and hope to you always....Lea and Superman

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`````

>

> Re: New Member

>

>

>

> ,

> You should see your messages on our group going through. You can just write to

the group address, the messages will post, and hopefully others will jump in and

respond.

>

> I hope you are doing OK...any specific symptoms that are overwhelming right

now?

> Patty

>

[Guest guest]

My Sweet Patty:

We have no idea why I have rectal bleeding; however, I have blood in my urine as well. It could be the blood-thinners. Dr. Blais has told me that I should see my hematologist, and see if he would agree to take me off of these pills. We are worried, because I have had three Silicone Induced Pulmonary Embolisms. I am a bit afraid of coming off the Coumadin, because when I have a PE, it is not typical. My symptoms are shortness of breath, and I have that symptom quite often...so it is frightening.

I would love to get cleaned out, but no doctor will do this surgery. To be honest with you, I am frightened to have more surgery.

Thank you for all that you do for us...love you...Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``

Re: New Member> > > > ,> You should see your messages on our group going through. You can just write to the group address, the messages will post, and hopefully others will jump in and respond.> > I hope you are doing OK...any specific symptoms that are overwhelming right now?> Patty>

[Guest guest]

Hello Patty...

Thank you ! You are so sweet ! I tell ya, I am extremely blessed....

and I know it...and it feels good ! !

Ya I hope to get things to where I can talk someone into

doing the surgery... I wanna be sure I am physically stable enuf to

do it too....I am thinkin once I get the lung issues under control....

I wont have heart surgery again for about 4 years +- some...it depends

on how hard the device has to work over the next couple years..

I am hoping now that I have some oxygen goin to my organs that

it will last longer this time......I tell ya, I am loving having my

brain functions back.....and fewer headaches.....I just dont understand

how thay missed treating me on this one.....my lungs had 2 liters of fluid in them for a couple weeks......and been having the ct's every few months

checking on the nodules in the lungs. All I can say, is perhaps God was

protecting me from having treatments I did not need....

Have a lovely evening Patty !

Love

Dede

When the power of love

overcomes the love of power

the world will know peace.

~ Jimi Hendrix

Re: Re: New Member

>

>

>

>

> 

> Darling Dede:

>

> Thank you for all of this information, and we all pray that you will get well. Honey, when did you move from your home, because the last that we heard, you were still in the home where you had to mow the lawns? We are sorry that you are in a flooded area, and please stay safe. We are still renovating our new/old home, because we could not stand the condo living. This home has two decks and a double garage..and a yard that is so beautiful. I am able to do some gardening again, but I cannot do very much

[Guest guest]



Honey, I have sent you an article that one of our Angels posted, and I have to be locked up again today. They will be putting the hardwood floors in our bedroom, and the kitties and I must be locked in our safe place. They should finish our bedroom today.

Sending love and hope all of the wonderful women in our group....Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``

Re: Re: New Member

Oh, :

Honey, you sound just like me, because my badly ruptured silicone breast implants were removed in 1993. I have all of the same symptoms, and it can be frightening. Do you have any rectal bleeding, because I have. We have to be so careful about how we take care of ourselves.

I have had severe respiratory problems, and an enlarged heart; however, I am getting better. It can takes so many years to get well, and I wonder sometimes if we will ever get completely well. I am positive for MGUS, and my doctors are doing tests this week to make sure that it is still Smoldering Myeloma. Tomorrow I will be collecting urine for 24 hours (UPEP, and then I will have the blood work done at the same time (SPEP). Each time that they test me I always worry, but we must try to stay positive

[Guest guest]

Hi Dede,

Thank you for the welcome. I'll join in more as I feel better, my brain is a little tired. I'm sorry too that we all have to suffer over this. Thank goodness we can help each other and offer support

Hugs,

There would be nothing to frighten you if you refused to be afraid. Gandhi

From: "DGRAHAMA@..." <DGRAHAMA@...> Sent: Mon, September 13, 2010 9:09:37 AMSubject: Re: Re: New Member

Hello !

Thanks for the big hug ! Heres one back

to you !

Welcome to the group ! I am sorry you are here

for the reason you are here, but I am glad we all have

each other to share support and stories and things

that help us.

Hugs !

Dede

When the power of love

overcomes the love of power the world will know peace.

~ Jimi Hendrix

Re: Re: New Member

Hello Sweet Lea ~

Oh, I havent moved......Ive been here since 97.....same home !

I was fortunate I had no flooding, but there was all around me..

I havent been with the group a whole lot since my heart surgery

end of April.....it has been one thing after another .......

After that I had another nook stress test and they found new

scarring on the back of my heart, then that led to a sleep

study, then another, then pulmonary function tests, and

CT of the lungs....all those nodules are still stable, yeah, but

I now have significant COPD, and my lungs dont expand

well, and I also have significant sleep apnea, but it is from

my lungs colapsing, not my esophagus or nasal passages.

I had no clue cuz I dont snore, or ever wake up gasping

for air...I also have episodes of hypopnea where the breathing

is so shallow, I almost just stop breathing....They say I must

wear the c-pap anytime I sleep....Recently I was put

on inhalers that also have ......STEROIDS in them.......but

was told I need them to keep things from getting worse.

I still am up about 4-7 times a night...now I just have to

mess with the machine and mask every time.....but....I have

to say, I dont have anywhere near the headaches.....and

with the c-pap on, I can deep breathe, it is on rather high

so it really blows it all open, ha ha......

Soooooo, I not only have BI's in....I also have a heart device

with 3 wires into 3 chambers of my heart to run it, and

I have a c-pap with mask I wear on one side of the bed and

a heart monitor machine on the other side of the bed that

monitors my heart every night while I am asleep........

What a mess.....but....I am alive, and have good times too,

usually every single day now... My pain level isnt as bad

as it was, and the way I eat and the kefir I make and drink

every single day is paying off....I have been

around people and not gotten deathly ill.....whoo hoo !

Much Love to all.....

Dede

[Guest guest]

Hi Lea...

Thanks for the article I just finished reading it ..yikes! I'm sorry for the rough day you're having. My poor cats must think it's a nut house around here too. I hope you weather the work in the house, and will be alright!!

Hugs,

There would be nothing to frighten you if you refused to be afraid. Gandhi

From: Lea <leamary@...> Sent: Mon, September 13, 2010 9:33:49 AMSubject: Re: Re: New Member

 Honey, I have sent you an article that one of our Angels posted, and I have to be locked up again today. They will be putting the hardwood floors in our bedroom, and the kitties and I must be locked in our safe place. They should finish our bedroom today.

Sending love and hope all of the wonderful women in our group....Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``

Re: Re: New Member

Oh, :

Honey, you sound just like me, because my badly ruptured silicone breast implants were removed in 1993. I have all of the same symptoms, and it can be frightening. Do you have any rectal bleeding, because I have. We have to be so careful about how we take care of ourselves.

I have had severe respiratory problems, and an enlarged heart; however, I am getting better. It can takes so many years to get well, and I wonder sometimes if we will ever get completely well. I am positive for MGUS, and my doctors are doing tests this week to make sure that it is still Smoldering Myeloma. Tomorrow I will be collecting urine for 24 hours (UPEP, and then I will have the blood work done at the same time (SPEP). Each time that they test me I always worry, but we must try to stay positive

[Guest guest]

Hi dede-i was fishing around on the internet and found a website on breast implant poisoning made by a Dede. So that isn't you? She had a video of getting her implants out. And I got so sad to see the Memorial link of women who have died from this. I couldn't bear to click on it because in my fragile emotional state, I just couldn't look. Maybe after I go thru explant surgery I will have the strength to be a better cheerleader on letting women know what could happen to their bodies. For now, just trying to stay healthy for my surgery (hopefully within this week if blood comes back ok!). Reading your trials and aching for you. BevSent via BlackBerry by AT&TFrom: DGRAHAMA@...Sender: Date: Sun, 12 Sep 2010 21:57:19 -0400 (EDT)< >Reply Subject: Re: Re: New MemberHello Patty...Thank you ! You are so sweet ! I tell ya, I am extremely blessed....and I know it...and it feels good ! ! Ya I hope to get things to where I can talk someone into doing the surgery... I wanna be sure I am physically stable enuf todo it too....I am thinkin once I get the lung issues under control....I wont have heart surgery again for about 4 years +- some...it dependson how hard the device has to work over the next couple years..I am hoping now that I have some oxygen goin to my organs thatit will last longer this time......I tell ya, I am loving having my brain functions back.....and fewer headaches.....I just dont understandhow thay missed treating me on this one.....my lungs had 2 liters of fluid in them for a couple weeks......and been having the ct's every few monthschecking on the nodules in the lungs. All I can say, is perhaps God wasprotecting me from having treatments I did not need....Have a lovely evening Patty ! LoveDedeWhen the power of love overcomes the love of power the world will know peace. ~ Jimi Hendrix Re: Re: New Member> > > > >  > Darling Dede:> > Thank you for all of this information, and we all pray that you will get well. Honey, when did you move from your home, because the last that we heard, you were still in the home where you had to mow the lawns? We are sorry that you are in a flooded area, and please stay safe. We are still renovating our new/old home, because we could not stand the condo living. This home has two decks and a double garage..and a yard that is so beautiful. I am able to do some gardening again, but I cannot do very much.> > Honey, we have a "big deck" off our bedroom....remember how much you made us laugh when we were building our deck in one of our other homes?> > Sending love and hope to you always....Lea and Superman> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`````> > Re: New Member> > > > ,> You should see your messages on our group going through. You can just write to the group address, the messages will post, and hopefully others will jump in and respond.> > I hope you are doing OK...any specific symptoms that are overwhelming right now?> Patty>

[Guest guest]

Hi Bev...

There is part of my story on the humanticsfoundation site that Ilena has..but it is only a partial of my story, doesnt include my 10 years of silicone rupture and 7 surgeries removing all kinds of junk.......nor does it include the last 3 years of my medical history...

Here is my link to her site.....

http://www.humanticsfoundation.com/dede.htm . Lots of our stories are on her site, and I highly recommend everyone send her your story....so people can see just how many people have horrible reactions to implants..

That is not me in the video, it is someone else..

There are lots of really good support groups, and I am member of several of them....lots of lovely people around !

Hugs

Dede

When the power of love

overcomes the love of power

the world will know peace.

~ Jimi Hendrix

Re: Re: New Member

>

>

>

>

> 

> Darling Dede:

>

> Thank you for all of this information, and we all pray that you will get well. Honey, when did you move from your home, because the last that we heard, you were still in the home where you had to mow the lawns? We are sorry that you are in a flooded area, and please stay safe. We are still renovating our new/old home, because we could not stand the condo living. This home has two decks and a double garage..and a yard that is so beautiful. I am able to do some gardening again, but I cannot do very much

[Guest guest]

My two year old son is going to try and do a DMSA pull with a 350mg suppositry.

I just want to be clear that this seems like a safe dose and if I should be

supplementing him with anything extra? He does take a number of vit and

minerals. Plus he is also being treated for yeast and bacteria. His doctor said

we are going to do a challenge test and see if he pulls anything. I am to take a

urin sample before and after. Does this sound like a pretty standard protocal? I

have not seen anyone in this group mention that they have done DMSA as a

suppository. I am nervous to give it to him for the first time. I am also more

nervous to not do it at all! Any toughts are welcome:-)

[Guest guest]

>

> My two year old son is going to try and do a DMSA pull with a 350mg

suppositry.

>

Insanely high dangerous dose. I believe absorption rate is pretty good with

suppositories so that dose is many times more than the maximum dose you should

take(1/2mg per pound of body weight). Why aren't you giving it to him orally?

Make sure you are taking it on a 3-4 hour schedule and that dose should start at

1/8 of his body weight in mgs.

> I just want to be clear that this seems like a safe dose and if I should be

> supplementing him with anything extra? He does take a number of vit and

> minerals. Plus he is also being treated for yeast and bacteria. His doctor

said

> we are going to do a challenge test and see if he pulls anything. I am to take

a

> urin sample before and after. Does this sound like a pretty standard protocal?

Hair tests are safer and more effective.

> I have not seen anyone in this group mention that they have done DMSA as a

> suppository. I am nervous to give it to him for the first time. I am also more

> nervous to not do it at all! Any toughts are welcome:-)

>

>

>

>

>