Help

[Guest guest]

As a cardiac LYMER I know POSITIVELY that lyme can attack your heart.

This is NOT just antecdotal....cardiac lyme IS ALSO in the

literature.....5-8% of all lymers will get cardiac lyme....of this

number 80% will have their cardiac lyme halted/cured with antibiotic

treatment.....the other 20% (such as myself) have had the bacteria

burrow into our hearts and will live on a heart medication for the rest

of our lives (which of course they dont know how long will be)...added

risk comes to the lymer if they have a family history of heart

problems....we live each day as if it could be our last.....and pray for

another......lymebrain

[Guest guest]

In a message dated 2/19/99 11:51:03 PM Eastern Standard Time,

Prinny328@... writes:

<< The doctors also said that my chest

pains are muscular and there was no heart involment. Thank you for you

responses in advance >>

: I, also had been to cardiologist . I had a very rapid heart rate

and terrible tightening pains through my chest area. After numerous

tests---nothing conclusive---and being told that this " was not Lyme disease

related " , I sought a Lyme literate physician ( who just happened to be an

internist who specialized in cardiology) and got the treatment I needed. I

also work for a chiropractor who does a very deep and sometimes " painful "

type of muscle massage and he convinced me that my pain was definitely from my

pectoral muscles that go into severe spasm. The massage he does really helps

when these muscles decide to act up. Fortunately, I am doing quite well now.

The last antibiotic I was put on was a combination of Biaxin/Plaquenil and I

have been symptomless now for 9 months since I stopped that regime. I am

keeping my fingers crossed. This is the longest period of time for me that I

am feeling like a " normal person " ------I had forgotten what that was like. I

hope you can find what you need to make you feel alive again.

Mona

[Guest guest]

yes, one of the complications of long term ( chronic ) lyme is cardiac

problems......

it is one of the many things i suffer from......i also have the pains and

heart palpitations that u spoke of.....i would recomend looking qat some of

the lyme web sites....there is info about cardiac and lyme.....then copy it

and gice it to ur heart doc....if he blows it off find a new

doctor.....amazing we the patients have to teach the pros about this

disease????

Reid

[Guest guest]

Hi Mona, That Biaxin Combo is what I am taking now.Could you tell me how long

you were on it as I don't not want to get taken off anytime soon and it has

been almost four months. Thank you and continue to be Well!!! -Val

[Guest guest]

Hi, Val:

I sure hope it works for you as well as it did for me. I went on the

combo in November of 1997 and was symptomless within about 2 1/2 months. I

stayed on it until May of 1998. Dr. Keszler said she wanted me syptomless for

3 or 4 months before she stopped it. Val, I forgot what it felt like to feel

" normal " .....I just pray that this lasts. I'll say a prayer for you

also......I know how horrible this thing can be. I don't remember where you

are from ( I am from Ct.) , are you going to the meeting on 2/24/99? If so,

maybe I'll find you in the crowd ).

Mona

[Guest guest]

Hi Val

What dosages were you on and how long were you sick before going on this combo?

thank you in advance

lea

WISHXXX@... wrote:

> From: WISHXXX@...

>

> Hi, Val:

>

> I sure hope it works for you as well as it did for me. I went on the

> combo in November of 1997 and was symptomless within about 2 1/2 months. I

> stayed on it until May of 1998. Dr. Keszler said she wanted me syptomless for

> 3 or 4 months before she stopped it. Val, I forgot what it felt like to feel

> " normal " .....I just pray that this lasts. I'll say a prayer for you

> also......I know how horrible this thing can be. I don't remember where you

> are from ( I am from Ct.) , are you going to the meeting on 2/24/99? If so,

> maybe I'll find you in the crowd ).

> Mona

>

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

> Suggestions on how we can improve ONElist? Go to the 'Suggestion'

> box on our new web site.

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

> Please send privately messages unrelated to lyme.

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> /archives.cgi/Lyme-Docs

> Email: -subscribeonelist

> You may substitute " unsubscribe " , " digest " , or " normal " for

> the word " subscribe " ( " normal " is the opposite of " digest " )

[Guest guest]

Hi Mona thanks for the reply. I am from Manhattan. I wanted to go to the

hearing on the 24th but I can't seem to get off of work. Gotta save up those

sick days ya know. Anyway I have been on this combo for four monthes and

although I am better I am still not back to normal. I was on zithromax and

amantinine in 97 and was well for a whole year. Then in july of 98 I relapsed

bad. I am now probably 60% better but I just want so bad to get back to where

I was after the zitro combo. It is so frustrating sometime. Anyway good luck

at the hearing I hope a lot of people are there to help us. Continue to feel

well-Val

[Guest guest]

In a message dated 2/21/99 12:47:38 PM, solar@... writes:

<<Hi Val

What dosages were you on and how long were you sick before going on this

combo?

thank you in advance>>

Hi Lea, I am on 1500 Mg of Biaxin and 200 plaquinel. Is that what you were on.

when I was on the Zithro combo it was 750 mg zithro and 200 mg amandatine. I

have had this disease for five years and have gone into remission about four

times each time for a year or a little more. It just keeps coming back. if I

can get into a remission this time which I pray to God, I want to stay on

antibiotics for at least a year or two. I usually only stayed on them for

about four to six months and then went off because all of my symptoms

disapeared. Continue to feel well -Val

[Guest guest]

--- gordon_sara26@... wrote:

> From: gordon_sara26@...

>

> Is anyone getting these? I keep getting an error

> message. sorry! If I only had a brain!

>

> hi-

I am getting this message ok. Are you able to get these?

L(MI)

>

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

[Guest guest]

HI:

Ambrotose promotes proper cell-to-cell communication which supports the

immune system's ability to deal with infections of various kinds (including

yeast) and also helps cells recognize each other which is real important in

conception.

I hope this helps.

Russ

help

> From: " Amy Dickey " <ADickey@...>

>

> My husband and I are trying to have a baby. I have candidiasis (yeast) and

> my husband probally does too.

> Currently I am taking Xodus from The Brain Garden (for a slow fiber

cleanse)

> EPO from GNC and FloraFood from AIM.

> Does anyone have any suggestions for a parasite cleanse and do you know

what

> the ingrediants are and if they are safe while tryng to conceive???

> Does anyone have any furter suggestions for my yeast prolem?

> AMY

> mailto:adickey@...

>

>

>

>

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

[Guest guest]

Can anyone tell me if you can rid yourself of Candida

without being on the diet? I am taking the supplements to

kill the yeast, but find the diet way too restrictive and

find myself eating things I shouldn't eat. Not much of it,

but still eating it. I am willing to take my time ridding

myself of this if it means not hurting so much and having a

bit more choices in what I eat.

Liz †

Patience is bitter but its fruit is sweet

" The end of a thing is better than the beginning;

the patient in spirit is better than the proud in

spirit "

Ecclesiates 7:8

[Guest guest]

Crosby wrote:

> HI:

>

> Ambrotose promotes proper cell-to-cell communication

What is Ambrotose, ?

Liz †

Patience is bitter but its fruit is sweet

" The end of a thing is better than the beginning;

the patient in spirit is better than the proud in

spirit "

Ecclesiates 7:8

[Guest guest]

Re: help

> From: ~Liz~ <liz0625@...>

>

> Crosby wrote:

>

> > HI:

> >

> > Ambrotose promotes proper cell-to-cell communication

>

>

> What is Ambrotose, ?

It is a blend of the carbohydrates that participate in the formation of

glycoproteins that the cells of our bodies use for communication. When we

add them to our diet, cells communicate better and the immune system works

better and the body then is empowered to get rid of the yeast. In fact,

Candida cannot live in the presence of ambrotose, because it empowers the

macrophages so well that they go around gobbling up and killing all the

yeast cells they can find like nothing else that has ever been seen before.

>

> Liz ?

>

> Patience is bitter but its fruit is sweet

>

> " The end of a thing is better than the beginning;

> the patient in spirit is better than the proud in

> spirit "

> Ecclesiates 7:8

>

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

[Guest guest]

Crosby wrote:

> >

> > What is Ambrotose, ?

>

> It is a blend of the carbohydrates that participate in the formation of

> glycoproteins that the cells of our bodies use for communication.

How do you get this miracle stuff and is it just called

Ambrotose? Is it expensive?

Liz †

Patience is bitter but its fruit is sweet

" The end of a thing is better than the beginning;

the patient in spirit is better than the proud in

spirit "

Ecclesiates 7:8

[Guest guest]

Re: help

> From: ~Liz~ <liz0625@...>

>

> Crosby wrote:

>

>

> > >

> > > What is Ambrotose, ?

> >

> > It is a blend of the carbohydrates that participate in the formation of

> > glycoproteins that the cells of our bodies use for communication.

>

> How do you get this miracle stuff and is it just called

> Ambrotose? Is it expensive?

Have to order it directly from the manufacturer.

Ambrotose

1 bottle, 60 capsules, US$39 retail. $28.50 wholesale, $25.65 on automatic

monthly delivery

Bulk powder 50 grams (= 5.5 bottles of capsules): $65 retail, $55 wholesale,

$49.50 on automatic monthly delivery

Bulk powder 100 grams (=11 bottles of capsules): $125 retail, $100

wholesale, $90 on automatic monthly delivery.

Wholesale purchasing privileges after registration. Cost to register = $49

(includes 1 bottle of ambrotose capsules). Net cost to register then is

$10.

They accept credit cards. Phone 1-800-281-4469. You will need this access

code R195838 when asked for enroller/sponsor #.

You will be assigned your own access code (called a control number) so you

will be in control of what you want to order, when you want to order it at

the same 800 #.

Hope this helps

Russ

>

> Liz ?

>

> Patience is bitter but its fruit is sweet

>

> " The end of a thing is better than the beginning;

> the patient in spirit is better than the proud in

> spirit "

> Ecclesiates 7:8

>

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

[Guest guest]

I was told that all carbo's were bad for yeast as they all turn into sugar?

Myra

Re: help

>

>

> > From: ~Liz~ <liz0625@...>

> >

> > Crosby wrote:

> >

> >

> > > >

> > > > What is Ambrotose, ?

> > >

> > > It is a blend of the carbohydrates that participate in the formation

of

> > > glycoproteins that the cells of our bodies use for communication..

> >

> > How do you get this miracle stuff and is it just called

> > Ambrotose? Is it expensive?

>

> Have to order it directly from the manufacturer..

>

> Ambrotose

>

> 1 bottle, 60 capsules, US$39 retail. $28.50 wholesale, $25.65 on

automatic

> monthly delivery

>

> Bulk powder 50 grams (= 5.5 bottles of capsules): $65 retail, $55

wholesale,

> $49.50 on automatic monthly delivery

>

> Bulk powder 100 grams (=11 bottles of capsules): $125 retail, $100

> wholesale, $90 on automatic monthly delivery..

>

> Wholesale purchasing privileges after registration. Cost to register = $49

> (includes 1 bottle of ambrotose capsules). Net cost to register then is

> $10..

>

> They accept credit cards. Phone 1-800-281-4469. You will need this

access

> code R195838 when asked for enroller/sponsor #..

>

> You will be assigned your own access code (called a control number) so you

> will be in control of what you want to order, when you want to order it at

> the same 800 #..

>

> Hope this helps

>

> Russ

>

>

> >

> > Liz ?

> >

> > Patience is bitter but its fruit is sweet

> >

> > " The end of a thing is better than the beginning;

> > the patient in spirit is better than the proud in

> > spirit "

> > Ecclesiates 7:8

> >

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

[Guest guest]

Myra:

Recent research is showing that this just is not the case and that this

particular blend supports virorous macrophage activity which gives them the

power to overcome the yeast.

Re: help

> >

> >

> > > From: ~Liz~ <liz0625@...>

> > >

> > > Crosby wrote:

> > >

> > >

> > > > >

> > > > > What is Ambrotose, ?

> > > >

> > > > It is a blend of the carbohydrates that participate in the formation

> of

> > > > glycoproteins that the cells of our bodies use for communication..

> > >

> > > How do you get this miracle stuff and is it just called

> > > Ambrotose? Is it expensive?

> >

> > Have to order it directly from the manufacturer..

> >

> > Ambrotose

> >

> > 1 bottle, 60 capsules, US$39 retail. $28.50 wholesale, $25.65 on

> automatic

> > monthly delivery

> >

> > Bulk powder 50 grams (= 5.5 bottles of capsules): $65 retail, $55

> wholesale,

> > $49.50 on automatic monthly delivery

> >

> > Bulk powder 100 grams (=11 bottles of capsules): $125 retail, $100

> > wholesale, $90 on automatic monthly delivery..

> >

> > Wholesale purchasing privileges after registration. Cost to register =

$49

> > (includes 1 bottle of ambrotose capsules). Net cost to register then is

> > $10..

> >

> > They accept credit cards. Phone 1-800-281-4469. You will need this

> access

> > code R195838 when asked for enroller/sponsor #..

> >

> > You will be assigned your own access code (called a control number) so

you

> > will be in control of what you want to order, when you want to order it

at

> > the same 800 #..

> >

> > Hope this helps

> >

> > Russ

> >

> >

> > >

> > > Liz ?

> > >

> > > Patience is bitter but its fruit is sweet

> > >

> > > " The end of a thing is better than the beginning;

> > > the patient in spirit is better than the proud in

> > > spirit "

> > > Ecclesiates 7:8

> > >

> > > --------------------------- ONElist

Sponsor ----------------------------

> > >

> > > Get $20 off all MotherNature brand products!

> > > <a href= " http://clickme.onelist.com/ad/mothernature1 " >Click Here</a>

> > >

> >

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

> > > _

> > >

> > > Subscription URL: /subscribe.cgi/candidiasis

> > >

> > >

> > > Send blank message to this e-mail address if you want to:

> > >

> > > TO UNSUBSCRIBE !!!!!!!!! :

> > >

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> > >

> > > To change status from normal to digest:

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> > > candidiasis-normalonelist

> > >

> > > To subscribe:

> > > candidiasis-subscribeonelist

> > >

> > >

[Guest guest]

Dear Ginger,

My name is Sharon Bowen and I'm the President of the Mid-State Volunteers

Chapter located in Springfield, Tenn. My entire family goes to Vanderbilt for

their health care. There is a WONDERFUL doctor there in genetics named Dr.

E. Tiller who is very active in LPA. He would be more than glad to

help you. We see Dr. Neil Green there for our orthopedic needs. He's the head

honcho and has treated me all my life. Me, my husband and daughter all have

achondroplasia. Dr. Greens bed side manner isn't always the greatest but I

want an expert in his field not someone to hold my hand. If you'll e-mail me

privately I'll be glad to pass on any info you might want or need. I'd also

like to include you on my chapter mailing list too.

Sharon

[Guest guest]

Contact Dr. Tiller at Vanderbuilt. He is a medical geneticist

there who has studied the SED family extensively and may be able to

refer you to a good dr. there and advise the said dr. adequately. You

will probably get lots of other good info from people on this list.

-marty

>>> " Ginger Ketron " <gingyk@...> 09/12 11:06 PM >>>

From: " Ginger Ketron " <gingyk@...>

Hi to all...

I have posted questions here before and I am very grateful for all the

responses. I guess I should remind you who we are since I write very

infrequently.

My son is Russ. He has the form of dwarfism called Spondyloepiphyseal

Dysplasia. He has had one surgery which was done 2 years ago by

Shriner's

Children's Hospital in Greenville, SC. He had an osteotomy done to

correct

the windswept position of his legs.

At the beginning of June, we traveled to Delaware to see Dr. MacKensie

at

Dupont and he agreed with us that Russ needs surgery done again. After

a

lot of struggles with the Shriner's Hospital, we have decided that we

need

to go else where to have this surgery done. Now, we need to find an

orthopedic doctor who is familiar with SED. Our insurance will pay for

most

of the surgery and doctor visits if the doctor is in the state of

Tennessee.

We hope to find a doctor at Vanderbilt...but most importantly is that

we

find a doctor who is familiar with dwarfism specifically SED. If you

know

of any that we could look into seeing, please let us know. We live in

City, TN.

Thank you again. If you need more information before you can answer

this

email, then please feel free to write me back at: gingyk@...

Love...

Ginger

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

[Guest guest]

Ginger,

We got a lawyer and fought our insurance company. Our son has all of his

surgeries at s Hopkins. We fought and fought for his life saving brain

surgery when he was nine months old. Last year(4 years later) we took him

back to have his legs straightened, and they paid 90% no questions asked.

We were only expecting them to pay 70%. All I can say is you pick the best

doctor, and fight the insurance. We are very happy with Dr Ain at

Hopkins 410-955-3135.

At 11:06 PM 9/12/99 -0400, you wrote:

>From: " Ginger Ketron " <gingyk@...>

>

>Hi to all...

>

>I have posted questions here before and I am very grateful for all the

>responses. I guess I should remind you who we are since I write very

>infrequently.

>

>My son is Russ. He has the form of dwarfism called Spondyloepiphyseal

>Dysplasia. He has had one surgery which was done 2 years ago by Shriner's

>Children's Hospital in Greenville, SC. He had an osteotomy done to correct

>the windswept position of his legs.

>

>At the beginning of June, we traveled to Delaware to see Dr. MacKensie at

>Dupont and he agreed with us that Russ needs surgery done again. After a

>lot of struggles with the Shriner's Hospital, we have decided that we need

>to go else where to have this surgery done. Now, we need to find an

>orthopedic doctor who is familiar with SED. Our insurance will pay for most

>of the surgery and doctor visits if the doctor is in the state of Tennessee.

>We hope to find a doctor at Vanderbilt...but most importantly is that we

>find a doctor who is familiar with dwarfism specifically SED. If you know

>of any that we could look into seeing, please let us know. We live in

> City, TN.

>

>Thank you again. If you need more information before you can answer this

>email, then please feel free to write me back at: gingyk@...

>

>Love...

>

>Ginger

>

>

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

[Guest guest]

Hello everyone..

My name is Amy Casca,and I live in Washington state.

I thankfully do not have Lyme disease,but am writing for a friend who we

are very certain does..

He does not have a computer and his vision has gotton very bad so that

is why I am writing for him..

He has been fighting this for about 4 years..

He was bitten by a tick and his friend remembers a very strange

rash(bite happened on a hunting trip and in a place he could not see,I

think the back of his neck)

He has seen every kind of Dr imajinable and been tested twice for

Lyme,with negative results.

At this point he needs a walker to get even to the bathroom...Whatever

this is has basically destroyed his life..He has lost his wife,his

business etc...

He is now staying in a back room at his brothers house.And ends up

spending most of his time alone.

He says that he can see but it is very blurred and things " move around "

Have any of you experienced this.

He also has a great deal of symptoms of lyme.His Drs seem to be giving

up on him,he has been tested for everything..

Their last ditch effort is to put him on Chemo therapy.They can find NO

cancer,but his Dr says that it may help whatever the problem is..

I think this sounds crazy..

Does ANYONE have any advice???

They want to start chemo on Monday,I am asking him to delay it until we

can find a Dr to explore Lyme better first.

Any advice is a god send,and I will print responses and read to him

Thank you all

Amy

[Guest guest]

NO chemo! That may very well aggravate it and the side affects are too

dangerous to risk. Chemo would just make him worse, I don't know what kind of

idiotic doctor who would do that but I really don't want to.

[Guest guest]

1. Chemotherapy for someone without cancer does indeed sound crazy.

Given the tick bite, and the rash (did the rash expand in size over many

days?) he probably does have Lyme. Antibiotics are the treatment of

choice.

2. Make sure he is tested for other tick-bourne illness, and not just

Lyme.

3. One can have Lyme, and still have negative bloodtest results (see last

link below)

4. Here are some of the most useful resources:

http://www.geocities.com/HotSprings/Spa/6772/washington-patients.txt

http://www.geocities.com/HotSprings/Spa/6772/washington-index.html

http://healthlinks.washington.edu/nwcphp/lyme/

http://www.geocities.com/HotSprings/Spa/6772/resources.html

http://www.geocities.com/HotSprings/Spa/6772/false-negative.txt

You're a good soul. You will get additional help from this list, as well.

This is a very caring group. All the best to you, and your friend.

Margie

--

Margie Roswell

3443 Guilford Terrace

Baltimore, MD 21218

H: 410-467-3727

W: 410-455-6802

E: mroswell@...

W: http://hello.to/maps

On Fri, 17 Sep 1999, Amy Casca wrote:

> From: amycasca@... (Amy Casca)

>

> Hello everyone..

> My name is Amy Casca,and I live in Washington state.

> I thankfully do not have Lyme disease,but am writing for a friend who we

> are very certain does..

> He does not have a computer and his vision has gotton very bad so that

> is why I am writing for him..

> He has been fighting this for about 4 years..

> He was bitten by a tick and his friend remembers a very strange

> rash(bite happened on a hunting trip and in a place he could not see,I

> think the back of his neck)

> He has seen every kind of Dr imajinable and been tested twice for

> Lyme,with negative results.

> At this point he needs a walker to get even to the bathroom...Whatever

> this is has basically destroyed his life..He has lost his wife,his

> business etc...

> He is now staying in a back room at his brothers house.And ends up

> spending most of his time alone.

> He says that he can see but it is very blurred and things " move around "

> Have any of you experienced this.

> He also has a great deal of symptoms of lyme.His Drs seem to be giving

> up on him,he has been tested for everything..

> Their last ditch effort is to put him on Chemo therapy.They can find NO

> cancer,but his Dr says that it may help whatever the problem is..

> I think this sounds crazy..

> Does ANYONE have any advice???

> They want to start chemo on Monday,I am asking him to delay it until we

> can find a Dr to explore Lyme better first.

> Any advice is a god send,and I will print responses and read to him

> Thank you all

> Amy

>

>

>

>

>

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

[Guest guest]

,

My friends name is Les..

I think the chemo idea sounds very irresponsible,without the presence of

cancer.

The doc says if it is lyme,the chemo would help that also...

I have done alot of research on the internet about lyme,and NOWHERE does

anyone make mention of chemo??

I went and saw him again last night and it was so heartbreaking....

He seems to have gotton worse in just the last few days.

His very worst complaint is constant dizziness and he says that

everything moves around,like being in an earthquake,24 hrs a day..We are

begging him to just say no top the chemo,but the Drs have told him this

is his last hope basically...

I dont know why they won`t just try the antibiotics and see...

I would see that as a much more prudent step than chemo.

But he has been laying there so long he is willing to do anything.

I read somewhere that some people are getting their antibiotics from Vet

suppy and treating themselves.

We are horse people,Les also..

And him and my husband said they would even try that.They are both very

used to doctoring the animals and could give the shots..

I think this is a very bad idea!!

I told them I will not give them the name of the drugs to do

that,(neither know enough about the comp. to find for themselves,and Les

cannot see the T.V screen let alone read the small print of the

computer}}but I can see the desperation.

And how much crazier than chemo therepy is that???

I am due to have a baby on Oct 10th so I am worried about Les during

that time..

If anyone will write him a letter,I will PROMISE to take it directly to

him and read it,I think it would mean alot to him..

Thanks,here I go crying again so I will close for now..

Amy

[Guest guest]

Also yes they did try to call it MS for awhile and then ruled that

out...