Re: Being Alone

[Guest guest]

>

> I am also pretty sure that I have Bartonella. I tried to sell

> that to an infectious disease doctor but she actually laughed. " Ticks

> do not carry Bartonella! " she cried. When I got home I googled; Ticks

> - Bartonella - CDC and sure enough they said that ticks DO CARRY

> Bartonella.

Ticks carry Bartonella, but some scientists/medics doubt that you can get Bart

from a tick byte. Apparently that has never been proven, although there is lots

of indirect evidence that it happens (e.g. from lymies with coinfections). In my

country (Netherlands) many docs also claim that you can't get Bart from a tick

byte.

[Guest guest]

Please forgive my ignorance- but then where does it come from??

[ ] Re: Being Alone

>

> I am also pretty sure that I have Bartonella. I tried to sell

> that to an infectious disease doctor but she actually laughed. " Ticks

> do not carry Bartonella! " she cried. When I got home I googled; Ticks

> - Bartonella - CDC and sure enough they said that ticks DO CARRY

> Bartonella.

Ticks carry Bartonella, but some scientists/medics doubt that you can get Bart

from a tick byte. Apparently that has never been proven, although there is lots

of indirect evidence that it happens (e.g. from lymies with coinfections). In my

country (Netherlands) many docs also claim that you can't get Bart from a tick

byte.

[Guest guest]

The phone has become my lifeline. I too live alone and my young adult daughters

live far away. A few of my closest friends call regularly which really gives my

spirits a lift. My local Lyme support group which meets every 2 weeks at the

library is considering adding a phone support (optional participation) where we

can state our availability and time to receive calls. Having someone actively

and compassionately listen without trying to " fix " things (or feel the need to

offer suggestions) is an act of compassion and generosity.

Josie, if you need someone to listen you can email me and we can exchange phone

numbers. And if anyone else would appreciate a phone buddy-- I'm available.

I'm a good listener. We can get acquainted online and take it from there.

Kim in western Mass.

Re: [ ] Being Alone

I need to take this moment to remind you that you are never alone. We

are all connected albeit spiritually or energetically. Please take

comfort in that...

Sent from my mobile device

On Aug 18, 2010, at 4:27 PM, PickPinkFlowers <haggisisscotsfood@...

> wrote:

> Being ill is isolating. I am housebound, dealing with this

> alone. No family left alive, and friends here have all died way too

> young, mostly from cancer. Local acquaintances don't call any more

> because I am too ill to participate and so am " no fun. " During the

> really bad times, it can be scary. Josie

>

>

>

>

[Guest guest]

I was engaged by your post. Obviously a lot of others suffer from the same sense

of isolation because you got a lot of responses.

I can remember during the 'dark days' of my illness, feeling so alone that I

would think, if I died in this bed tonight, it would be a month before anyone

noticed!

I joined groups like this. I wanted both knowledge as well as support and I was

too ill to attend actual physical groups. Even the telephone was often too

tiring. Friends and family fell away though I kept as much connection as I

could. The online groups became extremely important.

Now that I've improved, I'm using my educational and work background in mental

health, in combination with my own experience of illness to work with others who

are ill. I have a deep personal understanding of many of the issues we deal with

as a result of my own journey of illness and I want to share and support others

going through similar travails.

People do get better. Staying in touch as much as your health allows will

support you during the difficult times. Positive stories of those who have gone

before, improved if not 'cured' their conditions, helped me a lot. Prayers from

others helped me feel supported. ANYthing that eases the isolation and pain is

ok and good

Hugs and kisses, jo

>

>         Being ill is isolating. I am housebound, dealing with this alone.  No

family left alive, and friends here have all died way too young, mostly from

cancer. Local acquaintances don't call any more because I am too ill to

participate and so am " no fun. "  During the really bad times, it can be

scary.  Josie

>        

>         

>

>

>

>

>

[Guest guest]

There are multiple species of bartonella organisms. You can get them from cat

scratches, dog saliva, rodents, and ticks as well. I do not believe that the

BLO (bartonella like organism) responsible for what we refer to as bartonella as

a lyme coinfection is the same as what you would call 'cat scratch fever'. My

guess is that if I have lyme and BLO/bartonella, I would *think* they came from

the same place/bite. I personally cannot trace the beginning of my illness, so

I really have no idea.

This doesn't totally answer your question, but it's the best understanding I

have of it.

- Jen

From: kmanguish@...

Date: Thu, 19 Aug 2010 09:48:07 -0400

Subject: Re: [ ] Re: Being Alone

Please forgive my ignorance- but then where does it come from??

[ ] Re: Being Alone

>

> I am also pretty sure that I have Bartonella. I tried to sell

> that to an infectious disease doctor but she actually laughed. " Ticks

> do not carry Bartonella! " she cried. When I got home I googled; Ticks

> - Bartonella - CDC and sure enough they said that ticks DO CARRY

> Bartonella.

Ticks carry Bartonella, but some scientists/medics doubt that you can get Bart

from a tick byte. Apparently that has never been proven, although there is lots

of indirect evidence that it happens (e.g. from lymies with coinfections). In my

country (Netherlands) many docs also claim that you can't get Bart from a tick

byte.

[Guest guest]

I have read that Bartonella can be desribed as a " cat scratch disease " , but

there is also a tick associated strain of Bartonella and it is the most common

tick-borne pathogen. Look up ph J. Burrascano Jr. MD. He wrote: " Advanced

Topics in Lyme Disease " . There is a lot of good information in that article

about Lyme and it's co-infections. Maud

> >

> > I am also pretty sure that I have Bartonella. I tried to sell

> > that to an infectious disease doctor but she actually laughed. " Ticks

> > do not carry Bartonella! " she cried. When I got home I googled; Ticks

> > - Bartonella - CDC and sure enough they said that ticks DO CARRY

> > Bartonella.

>

> Ticks carry Bartonella, but some scientists/medics doubt that you can get Bart

from a tick byte. Apparently that has never been proven, although there is lots

of indirect evidence that it happens (e.g. from lymies with coinfections). In my

country (Netherlands) many docs also claim that you can't get Bart from a tick

byte.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Yes, but Bartonella can be had from cats, fleas, etc. So, it's much

easier to get it that way then from a tick. We have Bartonella at our

house, and it's our main problem.

Love and prayers,

Heidi N

Ticks carry Bartonella, but some scientists/medics doubt that you can

get Bart from a tick byte. Apparently that has never been proven,

although there is lots of indirect evidence that it happens (e.g. from

lymies with coinfections)

.. In my country (Netherlands) many docs also claim that you can't get

Bart from a tick byte.

[Guest guest]

>

>

> Please forgive my ignorance- but then where does it come from??

just to be sure: it is not my opinion that you can't get Bart from a tick. I'm

talking about what the medics and some scientists claim. They say Bart transfer

from ticks to humans is not proven. One could get Bart from pets (like with cat

scratch disease) or many other routes. There is so much we don't know.

It is not only ticks that are a walking zoo, you could say the same for humans.

One can't experiment on humans for establishing infection routes, and that makes

it difficult to know for sure where an infection comes from. Experimenting on

lab animals does not say much either: Bb behaves quite differently in most lab

animals, only in rhesus monkeys the outcome is very similar to humans.

Some Borrelia species (e.g. the one from louse borne relapse fever) are even

100% specific for humans. If you test them on lab animals you can easily reach

the wrong conclusions.

[Guest guest]

Hi Josie,

Yes, the isolation can be scary. I've also thought that if I died in the night

it would be days before I would be found because everyone had deserted me. I

felt so bad I used to fill my dog's and cat's food and water bowls very high so

if I died and it took days before I was found they would have a few days ration

to carry them over. I would always go to bed in clean new PJ's so I wouldn't be

found in the old ragged ones. (Even though the raggy ones are the most comfy.)

I've also had friends desert me. One of my best friends of 5 years terminated

our friendship one day at lunch when she informed me " I can't spend anymore time

with you because you've gotten too negative! " I wasn't " negative, " I was dying.

That was two years ago and I haven't heard from her since. I can laugh about it

now but it cut me to my soul sitting there across the table from her that day

and needing help and support so desperately.

It's been comforting to know there are other people who can appreciate all

you've been through and who care even if they aren't right there with you.

Sharing anything I can to help others gives me a way to feel like I can make a

difference and be helpful. I was so sick when I first got on the Lyme groups

that I barely had the energy to read the posts but reading them helped me know I

wasn't alone and I felt part of a community who cared about each other and it

was engouraging to know other people were getting well.

I've had Lyme for many years and I'm getting better each day. It took a long

time for me to be diagnosed and finally find the cure that's working for me. I'm

not taking any abx. I'm following the Buhner protocol. There is a right cure

for everyone. I think getting the right diagnosis is the hardest part of healing

Lyme. After that it's a matter of fine tuning the remedy.

Blessings of good health

Barbara

> >

> >         Being ill is isolating. I am housebound, dealing with this alone. 

No family left alive, and friends here have all died way too young, mostly from

cancer. Local acquaintances don't call any more because I am too ill to

participate and so am " no fun. "  During the really bad times, it can be

scary.  Josie

[Guest guest]

Wow! I'm well past this now, but I remember those thoughts 'if I die in the

night it will be days/weeks before anyone notices!' I didn't know anyone else

felt that way. Sad, sad commentary on how isolating it was to have 'yuppie flu'

all those years. jo

> >

> >>

> > I can remember during the 'dark days' of my illness, feeling so alone that I

would think, if I died in this bed tonight, it would be a month before anyone

noticed!

> >

[Guest guest]

Thanks to all who shared on this topic; it is a basic reality which many of us

face day-to-day. It needs to be voiced and it needs to be heard.

 

When I read what you wrote, Barbara, about your friend deserting you in your

greatest time of need it cut me to the bone. It is hard to believe that people

can be so callous.

 

I, too, have had many people disappear from my life. It is often hard for me to

understand. I would like to think that I would be there for them if they were

going through this. The only sense I can make of it is that what we are going

through is threatening to other people. It is so counter to how most people live

their lives in an upward trajectory of more and better people, places and

things. I know I was caught up in that before I became ill.

 

Having a chronic illness is often distressing, isolating and, dare I say,

enlightening. After almost 4 years of struggle I may be just beginning to see

some sense in all of this. It doesn't mean I like it or don't want to get

better. I am attempting to accept my limitations while also playfully testing

them. The way I lived before must change if I am to get better; I want to live

with ease and grace. (Quite a challenge if you know me.)

 

I attend a support group and I have made friends there with others who

have lyme. They understand me. I can talk to them honestly and unreservedly

about how I am feeling. This takes the pressure off the few friends I have left

who don't have the problems I have.

 

Most of us are just getting by and our energy is limited. But we all know that

we need some kind of organization that sends lyme literate people out into the

community to help others with lyme disease. No one should feel alone in this.

Our community is getting stronger and bigger. It's time to take care of our

own................

 

Take care all,

Kathleen

 

From: firstmenders <Euodiau@...>

Subject: [ ] Re: Being Alone

Date: Monday, August 23, 2010, 11:50 AM

 

Hi Josie,

Yes, the isolation can be scary. I've also thought that if I died in the night

it would be days before I would be found because everyone had deserted me. I

felt so bad I used to fill my dog's and cat's food and water bowls very high so

if I died and it took days before I was found they would have a few days ration

to carry them over. I would always go to bed in clean new PJ's so I wouldn't be

found in the old ragged ones. (Even though the raggy ones are the most comfy.)

I've also had friends desert me. One of my best friends of 5 years terminated

our friendship one day at lunch when she informed me " I can't spend anymore time

with you because you've gotten too negative! " I wasn't " negative, " I was dying.

That was two years ago and I haven't heard from her since. I can laugh about it

now but it cut me to my soul sitting there across the table from her that day

and needing help and support so desperately.

It's been comforting to know there are other people who can appreciate all

you've been through and who care even if they aren't right there with you.

Sharing anything I can to help others gives me a way to feel like I can make a

difference and be helpful. I was so sick when I first got on the Lyme groups

that I barely had the energy to read the posts but reading them helped me know I

wasn't alone and I felt part of a community who cared about each other and it

was engouraging to know other people were getting well.

I've had Lyme for many years and I'm getting better each day. It took a long

time for me to be diagnosed and finally find the cure that's working for me. I'm

not taking any abx. I'm following the Buhner protocol. There is a right cure for

everyone. I think getting the right diagnosis is the hardest part of healing

Lyme. After that it's a matter of fine tuning the remedy.

Blessings of good health

Barbara

Buy Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its

Coinfections by Buhner at one of these locations:

http://tinyurl.com/3bgm5d

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

..

[Guest guest]

Amen Kathleen - I have lost people that were close to me; that I thought

would support me. This is a great group,

_____

From:

[mailto: ] On Behalf Of Kathleen McCormick

Sent: Tuesday, September 07, 2010 10:24 PM

Subject: Re: [ ] Re: Being Alone

Thanks to all who shared on this topic; it is a basic reality which many of

us face day-to-day. It needs to be voiced and it needs to be heard.

When I read what you wrote, Barbara, about your friend deserting you in your

greatest time of need it cut me to the bone. It is hard to believe that

people can be so callous.

I, too, have had many people disappear from my life. It is often hard for me

to understand. I would like to think that I would be there for them if they

were going through this. The only sense I can make of it is that what we are

going through is threatening to other people. It is so counter to how most

people live their lives in an upward trajectory of more and better people,

places and things. I know I was caught up in that before I became ill.

Having a chronic illness is often distressing, isolating and, dare I say,

enlightening. After almost 4 years of struggle I may be just beginning to

see some sense in all of this. It doesn't mean I like it or don't want to

get better. I am attempting to accept my limitations while also playfully

testing them. The way I lived before must change if I am to get better; I

want to live with ease and grace. (Quite a challenge if you know me.)

I attend a support group and I have made friends there with others who have

lyme. They understand me. I can talk to them honestly and unreservedly about

how I am feeling. This takes the pressure off the few friends I have left

who don't have the problems I have.

Most of us are just getting by and our energy is limited. But we all know

that we need some kind of organization that sends lyme literate people out

into the community to help others with lyme disease. No one should feel

alone in this. Our community is getting stronger and bigger. It's time to

take care of our own................

Take care all,

Kathleen

From: firstmenders <Euodiau@... <mailto:Euodiau%40aol.com> >

Subject: [ ] Re: Being Alone

<mailto: %40>

Date: Monday, August 23, 2010, 11:50 AM

Hi Josie,

Yes, the isolation can be scary. I've also thought that if I died in the

night it would be days before I would be found because everyone had deserted

me. I felt so bad I used to fill my dog's and cat's food and water bowls

very high so if I died and it took days before I was found they would have a

few days ration to carry them over. I would always go to bed in clean new

PJ's so I wouldn't be found in the old ragged ones. (Even though the raggy

ones are the most comfy.)

I've also had friends desert me. One of my best friends of 5 years

terminated our friendship one day at lunch when she informed me " I can't

spend anymore time with you because you've gotten too negative! " I wasn't

" negative, " I was dying. That was two years ago and I haven't heard from her

since. I can laugh about it now but it cut me to my soul sitting there

across the table from her that day and needing help and support so

desperately.

It's been comforting to know there are other people who can appreciate all

you've been through and who care even if they aren't right there with you.

Sharing anything I can to help others gives me a way to feel like I can make

a difference and be helpful. I was so sick when I first got on the Lyme

groups that I barely had the energy to read the posts but reading them

helped me know I wasn't alone and I felt part of a community who cared about

each other and it was engouraging to know other people were getting well.

I've had Lyme for many years and I'm getting better each day. It took a long

time for me to be diagnosed and finally find the cure that's working for me.

I'm not taking any abx. I'm following the Buhner protocol. There is a right

cure for everyone. I think getting the right diagnosis is the hardest part

of healing Lyme. After that it's a matter of fine tuning the remedy.

Blessings of good health

Barbara

Buy Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its

Coinfections by Buhner at one of these locations:

http://tinyurl.com/3bgm5d

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

..