Re: no happy stories

[Guest guest]

<<<Just a bunch of

arguing. I know there isn't much to be happy about when you have

Lyme. I know I'm not. Is there anyone out there who has been cured,

or atleast mostly cured? I am starting to think that is never going

to happen for anyone, including myself. >>>>

Please know Meg,

That people can be cured from having Lyme Disease. I am one of those

individuals. Unfortunately, living with Lyme and all of it's terrible symptoms

for so very long, causes many of those to leave Lyme Aid once they are cured.

You just can't continue to live and breathe Lyme 24/7..........as many of us

have for years.

So once cured, many of us move on to living our lives again. I continue to pop

in from time to time.

This is the first time I have seen so much direct attacking of one

another.........very sad, I must say.

I don't think that this is very helpful....support is what this group is all

about.

Hang in there Meg,

A cure is possible,

Connieknwnj

[Guest guest]

In a message dated 6/11/2005 10:38:49 AM Eastern Standard Time, rod@...

writes:

>

> >A couple of days ago, I posted asking for good news--from anybody.

> >Still haven't heard one halfway happy story. Just a bunch of

> >arguing. I know there isn't much to be happy about when you have

> >Lyme. I know I'm not. Is there anyone out there who has been cured,

> >or atleast mostly cured?

>

>

YES!!! There are happy stories to share.....

I am rarely on this group anymore but wanted to give hope to those that are

in despair with this horrible disease! I am a recovered lymie, so is my family

and there are many stories of my clients that have recovered, are still

recovering but are still here after a diagnosis of MS, ALS, Parkinson's, etc. I

ended up as sick as can be, paralyzed from the neck down 6yrs. ago, did 5+ yrs.

of

abx, and switched to all natural. I am NOT swaying anyone one way or the

other; we are all on our own personal journey and it is each individual's

journey

as to their health.

Antibiotics work for some, they might even just help a little bit, while

others get no relief at all. We are all different. Some prefer orals, some IV

(if

they can get it). Others chose right out to do natural, or have done abx for a

while, then chose natural.

Some chose both.... abx and natural.

What seems to be effective is antibiotics, rife machine, hyperbaric,

infra-red sauna, Salt/Vit C protocol, Argentyn 23 (silver, which is what I use

with my

clients), Samento, also known as Cat's Claw --liquid, artemesinin. One could

also consider detoxing, cleansing, nourishing and rebuilding the body. I have

found that this helps change ones internal environment and teaches to body to

co-exist with lyme and any other pathogen one could be infected with.

Having a positive outlook helps, obviously, and I know that that seems

impossible when you can't even tell what day, month or year it is! In 1999 I

kept

writing my checks with the date " 1975 " ...???? You are in so much pain and feel

completely defeated. Support is extremely helpful and that is why these boards

can help.

Blessings-

sue massie, CNHP

732 933-4011

[Guest guest]

> A couple of days ago, I posted asking for good news--from anybody.

> Still haven't heard one halfway happy story. Just a bunch of

> arguing. I know there isn't much to be happy about when you have

> Lyme. I know I'm not. Is there anyone out there who has been cured,

> or atleast mostly cured?

I went 17 years misdiagnosed, a very long time for this disease. I did

nearly 4 years of constant abx when I stopped for 2. The first year I felt

GREAT! Beyond great, forgot that I actually had at one time felt that good.

However the symptoms hav ebeen slowly coming back, knew they would. I look

for remissions like that, doubt if I will be cured since it is in my brain

and heart. There is HOPE, just have to stick with it.

in far-out therapies. I can

> certainly understand why people would try them, though, when you are

> at the end of your rope and have no alternative but to keep trying

> until you get better. I hope I'm never at that point, although it's

> certainly possible.

> I am trying the " traditional " method: Oral doxy (100 mg. 2x/day-very

> low dose, not enough I feel!) for 28 days. This is for beginners. I

> have disseminated Lyme. I have gotten some of my energy back, but am

> terribly sore with arthritis and tendonitis. I limp everywhere. Still

> have muscle pain and low fever x 2 months, although symptoms started

> over a year ago. Some of the tingling has gone away and my skin is

> not on fire. But I am not well by any means.

> Which brings me back to the first question: Has anyone gotten well or

> pseudo-well from Lyme? I need hope. Not getting any from this site.

> I guess if someone does get well, they wouldn't still be posting on

> this site, which might explain the lack of success stories. Still, I

> would love to hear anything positive.

> Thanks for your responses and well-wishes over the last few days.

> Meg

>

>

>

>

>

>

>

> Questions and/or comments can be directed to the list owner at

-Owner

>

>

[Guest guest]

Meg,

I have a medium happy story. I got bit and had EM rash in 1991. Had

disseminated lyme, multiple rashes and symptoms for 2 months before

treatment of only two weeks oral tetracycline. (dont know which kind

or dosage...was young then and they didnt know much then either) Got

MUCH worse (now I know about herx) and then better in those two weeks

and didnt think about lyme disease for 10 whole years!

10 whole years of NO symptoms! Oh and NO treatment either!

Relapse or reinfection in 2000. 2 Months of IV rocephin, 6 months of

various ABX and again symptom free!

No treatment or symptoms for almost 4 years!

I was training for a triathlon. (yes, you heard that correctly!) in

fall of 2004 when I injured my shoulder, and got a steroid shot.

Combo of that shot and injury and over training and denying the

relapse for months, has caused lyme to relapse since december 2004. I

also was never treated for coinfections that I am positive for.

I am pretty sick again and cant even THINK about running or biking and

havent swam in months! But, I was there AFTER lyme treatment and I

beleive I will get there again!

Some of this may depend on the strain of Bb and the co-s you have.

and your reinfection possiblity and your length of time sick and your

age now.

You can and will get better. It is NOT fast or easy. But doable.

Hope that was helpful!

[Guest guest]

In a message dated 6/11/2005 6:57:13 PM US Mountain Standard Time,

writes:

Meg I agree, I joined to get as much lyme information as possible. I

think there is a place for traditional and non-traditional medicine.

So far I haven't got much help, just a lot of arguing. I think we

are all entitled to our own opinions, so I don't really get all the

arguing. I think everyone should be able to state their opinions, and

if you don't agree with it, don't read the post. We are all

intelligent people who can decide for ourselves what we want to try.

I think we already have enough crap going on in our lives that we

don't need to come here and argue!!

I would really like to hear some of the stories of other people with

lyme and what they took, and what worked for them, and what didn't.

I know that what worked for one person may not work for another.

Kathy

Kathy and also the other person, Meg? Remember that really MOST people do

get better from Lyme disease and many get better from chronic lyme disease. I

have been reading these boards now for six years and I have seen a lot of

people recover and leave. Most people who get better seem to do a combination

of regular and alternative medicine, and they seem to work with a good llmd

and an alternative practitioner as well. There is no " one " right answer for

Lyme and other tick-diseases. Everyone seems to be so different in terms of

where it attacks the body as well. So don't give up hope. Read and take what

you can. And ignore anyone who appears to act as if they have the only

right answer. There are other places to read too and I am sure Robyn might not

mine my posting some of them. I used to read a lot on lymenet too.

_http://www.lymenet.org_ (http://www.lymenet.org) . They have fighting too but

it is

usually nipped in the bud. Also on there are several alternative

medicine lyme groups. I really like the one called Lyme and Natural Health. It

is

very quiet and gentle and you wouldn't see arguing or calling people names

either in sarcastic tones.

Hang in there. There are a lot of great people around with Lyme who are

" balanced " and " well read " and " educated " and see the whole picture and have

done a lot of research and been in the lyme community a long time and they can

help you.

[Guest guest]

meg wrote: " A couple of days ago, I posted asking for good news--from

anybody.

Still haven't heard one halfway happy story. "

greetings, meg

as i've noticed on other illness-related listservs, when folks get better,

they are get busy catching up with their life, family, and work, not hanging

out online talking about an illness they used to have.

for happy stories, i can tell you that my current doc and both her children

had lyme--that's how she became involved in learning about lyme, ilads, and

various protocols. she did the oral and iv antibiotics and dr. shoemaker

protocol for cleansing the toxins. she also takes a lot of supplements and

pays a lot of attention to diet, exercise, reducing stress, etc. as far as i

know, she and her family are still doing well.

i have a friend who had lyme 2 years ago. she was very healthy, biked all

over (did not own a car), and suddenly was on crutches, then wheelchair. she

did the oral, then iv antibiotics, which improved some. but she did not get

completely better until she found my doc and did the dr. shoemaker protocol

for cleansing the toxins using clorestyramine. after one month detox, she

was about 70% better and after three months, she was 98% better. she has

been fine this last year. she got diagnosed and started treatment for lyme

about 9 months after getting bit, however that's quite a different situation

from folks who have had it for years before getting treatment.

one thing that feels true for me, giving in to despair or giving up the

possibility that i can get better will not help me right now in this moment.

i prefer to stay centered in gratitude for whatever small blessings are

present now and to greet my illness as a teacher. i've been totally disabled

by this illness (and other complex illnesses) for over 3 years, lost my job

and marriage, and was only diagnosed with lyme last fall. yet during that

time, i have learned so much about myself and the universe, finally making

deep changes in my lifestyle and attitudes that were long overdue. so in

many ways, this illness has been a great teacher for me.

may clear light & deep peace guide your journey,

kendra

[Guest guest]

Meg I agree, I joined to get as much lyme information as possible. I

think there is a place for traditional and non-traditional medicine.

So far I haven't got much help, just a lot of arguing. I think we

are all entitled to our own opinions, so I don't really get all the

arguing. I think everyone should be able to state their opinions, and

if you don't agree with it, don't read the post. We are all

intelligent people who can decide for ourselves what we want to try.

I think we already have enough crap going on in our lives that we

don't need to come here and argue!!

I would really like to hear some of the stories of other people with

lyme and what they took, and what worked for them, and what didn't.

I know that what worked for one person may not work for another.

Kathy

> A couple of days ago, I posted asking for good news--from anybody.

> Still haven't heard one halfway happy story. Just a bunch of

> arguing. I know there isn't much to be happy about when you have

> Lyme. I know I'm not. Is there anyone out there who has been

cured,

> or atleast mostly cured? I am starting to think that is never

going

> to happen for anyone, including myself. I have tried some

> alternative therapies (i.e., allergy diets, vitamin/food detox,

> supplements), which are probably harmless and are probably good for

> you, but don't know if I truly believe in far-out therapies. I can

> certainly understand why people would try them, though, when you

are

> at the end of your rope and have no alternative but to keep trying

> until you get better. I hope I'm never at that point, although

it's

> certainly possible.

> I am trying the " traditional " method: Oral doxy (100 mg. 2x/day-

very

> low dose, not enough I feel!) for 28 days. This is for beginners.

I

> have disseminated Lyme. I have gotten some of my energy back, but

am

> terribly sore with arthritis and tendonitis. I limp everywhere.

Still

> have muscle pain and low fever x 2 months, although symptoms

started

> over a year ago. Some of the tingling has gone away and my skin is

> not on fire. But I am not well by any means.

> Which brings me back to the first question: Has anyone gotten well

or

> pseudo-well from Lyme? I need hope. Not getting any from this

site.

> I guess if someone does get well, they wouldn't still be posting on

> this site, which might explain the lack of success stories. Still,

I

> would love to hear anything positive.

> Thanks for your responses and well-wishes over the last few days.

> Meg

[Guest guest]

Hi Meg,

I hope you are still here, you sounded pretty disgusted at all the

arguing going on ( as am I, but what do you expect from a lawyer? .

I have had Lyme for 28 years at least, just diagnosed this last

January. Also, all 3 of my daughters have it, too, as per PCR testing.

My 13 year old seems to have it the worst, as do I.

I will tell you that I have been on 2 different antibiotics

simultaniously ( please forgive the spelling if it isn't perfect,

after having Lyme this long my spelling is going down hill, I used to

be a natural ) and Plaquinal also. My daughter is on 1 antibiotic and

Plaquinal for 5 months now, nearly 6. We both tested positive for Lyme

and Babesia, along with other co-infections. I can tell you without a

shadow of a doubt that I and everyone that knows us can see a

difference ( for the better ) in my daughter. She actually smiles

and laughs now, which had disappered for a very long time ( I forgot

to tell you that she has been sick for at least 10 years if not since

birth and then chicken pox at 2 1/2 brought it on full strength ). It

is a miracle to me to see my precious girl coming back to me!! Don't

get me wrong she still has a Herx around every 4 weeks that lasts a

week or so, but she is so much better. Even the dark circles under

her eyes have lightened and she doesn't complain about the light

hurting her eyes anymore ( well, hardly at all ).

Also, I have noticed the same kinds of improvements in myself and my

best friend ( whom I see a couple of times a week ) says she can

definately see improvements in me, too!!! I had worse hip pain and

other symptoms for the first 3 months, then it started to improve, now

it is more rare than not, which is the exact opposite of what it was!!

That is not to say that I still don't have a lot of trouble in the

mornings and some bad days besides my Herx which is about every 4

weeks, just so happens that my youngest daughter, ( the one I was

typing about ) and I have them at the same time of the month. What I

find interesting is that my older twin daughters have their Herx's at

the same time, too, just about 2 weeks after me and my youngest.

So YES, Meg, there are definite improvements to be had. I can't tell

you if their is a cure, because I'm so new to the whole issue, but

I'll try to keep you posted.

Also, I must tell you that I went to a conference in CT last month,

and honestly, I was quite discouraged by what I heard. What I

gathered from 8 hours of famous LLMD's talking and getting to ask them

questions at the end, was that there are the 30% or so ( can't

remember the number, but it was low like 30%), that are completely

symptom free after a lengthy course of ABX, but most relapse and need

more ABX at some time in there lives.

I don't want to be on antibiotics for (basically) the rest of my life.

They were speaking to my questions and the fact that I've had it so

long. I also asked Dr. Fallon ( famous researcher for Lyme ) what he

would give to a patient that had to be on steriods, just to survive

(due to a lung condition) and he said Antibacterials, and I said like

salt and C and he shook his head yes. I looked up antibacterials on

the web when I got home that night and only found salt and C for

antibacterials for humans. It made me start some alternative

protocols ALONG WITH the antibiotics, with my LLMD's blessing. I can

honestly say I actually feel like they are helping.

Best of luck with your protocol and may God bless you during this

trying time!

> A couple of days ago, I posted asking for good news--from anybody.

> Still haven't heard one halfway happy story. Just a bunch of

> arguing. I know there isn't much to be happy about when you have

> Lyme. I know I'm not. Is there anyone out there who has been

cured,

> or atleast mostly cured? I am starting to think that is never

going

> to happen for anyone, including myself. I have tried some

> alternative therapies (i.e., allergy diets, vitamin/food detox,

> supplements), which are probably harmless and are probably good for

> you, but don't know if I truly believe in far-out therapies. I can

> certainly understand why people would try them, though, when you

are

> at the end of your rope and have no alternative but to keep trying

> until you get better. I hope I'm never at that point, although

it's

> certainly possible.

> I am trying the " traditional " method: Oral doxy (100 mg.

2x/day-very

> low dose, not enough I feel!) for 28 days. This is for beginners.

I

> have disseminated Lyme. I have gotten some of my energy back, but

am

> terribly sore with arthritis and tendonitis. I limp everywhere.

Still

> have muscle pain and low fever x 2 months, although symptoms

started

> over a year ago. Some of the tingling has gone away and my skin is

> not on fire. But I am not well by any means.

> Which brings me back to the first question: Has anyone gotten well

or

> pseudo-well from Lyme? I need hope. Not getting any from this

site.

> I guess if someone does get well, they wouldn't still be posting on

> this site, which might explain the lack of success stories. Still,

I

> would love to hear anything positive.

> Thanks for your responses and well-wishes over the last few days.

> Meg

[Guest guest]

,

I can't believe that Dr. Fallon of all people would recommend the

salt and vitamin C protocol. Are you sure about that?? I just find

that so uncharacteristic of him. I am a patient of his, and have

also read all of his research. Antibacterials are also another world

for antibiotics. Are you sure he didn't mean that? I guess I would

like to ask him now if he recommends that because I just find it

impossible to believe! Honestly, I am not arguing with you. I am just

shocked. If you see him again, can you clarify and let us know

because maybe you misunderstood. I won't see him again until the

fall probably.

Thanks.

> Hi Meg,

>

> I hope you are still here, you sounded pretty disgusted at all the

> arguing going on ( as am I, but what do you expect from a

lawyer? .

>

> I have had Lyme for 28 years at least, just diagnosed this last

> January. Also, all 3 of my daughters have it, too, as per PCR

testing.

> My 13 year old seems to have it the worst, as do I.

>

> I will tell you that I have been on 2 different antibiotics

> simultaniously ( please forgive the spelling if it isn't perfect,

> after having Lyme this long my spelling is going down hill, I used

to

> be a natural ) and Plaquinal also. My daughter is on 1 antibiotic

and

> Plaquinal for 5 months now, nearly 6. We both tested positive for

Lyme

> and Babesia, along with other co-infections. I can tell you

without a

> shadow of a doubt that I and everyone that knows us can see a

> difference ( for the better ) in my daughter. She actually smiles

> and laughs now, which had disappered for a very long time ( I forgot

> to tell you that she has been sick for at least 10 years if not

since

> birth and then chicken pox at 2 1/2 brought it on full strength ).

It

> is a miracle to me to see my precious girl coming back to me!!

Don't

> get me wrong she still has a Herx around every 4 weeks that lasts a

> week or so, but she is so much better. Even the dark circles under

> her eyes have lightened and she doesn't complain about the light

> hurting her eyes anymore ( well, hardly at all ).

>

> Also, I have noticed the same kinds of improvements in myself and my

> best friend ( whom I see a couple of times a week ) says she can

> definately see improvements in me, too!!! I had worse hip pain and

> other symptoms for the first 3 months, then it started to improve,

now

> it is more rare than not, which is the exact opposite of what it

was!!

> That is not to say that I still don't have a lot of trouble in the

> mornings and some bad days besides my Herx which is about every 4

> weeks, just so happens that my youngest daughter, ( the one I was

> typing about ) and I have them at the same time of the month. What

I

> find interesting is that my older twin daughters have their Herx's

at

> the same time, too, just about 2 weeks after me and my youngest.

>

> So YES, Meg, there are definite improvements to be had. I can't tell

> you if their is a cure, because I'm so new to the whole issue, but

> I'll try to keep you posted.

>

> Also, I must tell you that I went to a conference in CT last month,

> and honestly, I was quite discouraged by what I heard. What I

> gathered from 8 hours of famous LLMD's talking and getting to ask

them

> questions at the end, was that there are the 30% or so ( can't

> remember the number, but it was low like 30%), that are completely

> symptom free after a lengthy course of ABX, but most relapse and

need

> more ABX at some time in there lives.

>

> I don't want to be on antibiotics for (basically) the rest of my

life.

> They were speaking to my questions and the fact that I've had it so

> long. I also asked Dr. Fallon ( famous researcher for Lyme ) what

he

> would give to a patient that had to be on steriods, just to survive

> (due to a lung condition) and he said Antibacterials, and I said

like

> salt and C and he shook his head yes. I looked up antibacterials on

> the web when I got home that night and only found salt and C for

> antibacterials for humans. It made me start some alternative

> protocols ALONG WITH the antibiotics, with my LLMD's blessing. I

can

> honestly say I actually feel like they are helping.

>

> Best of luck with your protocol and may God bless you during this

> trying time!

>

>

[Guest guest]

I don't even care if I have to take an antibiotic for years if it

makes me feel better. I just hope the herxing part gets better.

Kathy

> > A couple of days ago, I posted asking for good news--from

anybody.

> > Still haven't heard one halfway happy story. Just a bunch of

> > arguing. I know there isn't much to be happy about when you have

> > Lyme. I know I'm not. Is there anyone out there who has been

> cured,

> > or atleast mostly cured? I am starting to think that is never

> going

> > to happen for anyone, including myself. I have tried some

> > alternative therapies (i.e., allergy diets, vitamin/food detox,

> > supplements), which are probably harmless and are probably good

for

> > you, but don't know if I truly believe in far-out therapies. I

can

> > certainly understand why people would try them, though, when you

> are

> > at the end of your rope and have no alternative but to keep

trying

> > until you get better. I hope I'm never at that point, although

> it's

> > certainly possible.

> > I am trying the " traditional " method: Oral doxy (100 mg.

> 2x/day-very

> > low dose, not enough I feel!) for 28 days. This is for beginners.

> I

> > have disseminated Lyme. I have gotten some of my energy back, but

> am

> > terribly sore with arthritis and tendonitis. I limp everywhere.

> Still

> > have muscle pain and low fever x 2 months, although symptoms

> started

> > over a year ago. Some of the tingling has gone away and my skin

is

> > not on fire. But I am not well by any means.

> > Which brings me back to the first question: Has anyone gotten well

> or

> > pseudo-well from Lyme? I need hope. Not getting any from this

> site.

> > I guess if someone does get well, they wouldn't still be posting

on

> > this site, which might explain the lack of success stories. Still,

> I

> > would love to hear anything positive.

> > Thanks for your responses and well-wishes over the last few days.

> > Meg