Re: Protocol for treating Lyme?

[Guest guest]

,

This sounds like a very reasonable protocol. If you were sick for 3

years prior to diagnosis, it can take a long time to recover.

Some people are being treated with IV antibiotics, although some

doctors believe that oral antibiotics now work just as well.

Everyone seems to respond uniquely to antibiotics. I've been on quite

a few different antibiotics and antibiotic combinations. I feel best

when I'm taking Biaxin & Plaquenil, but the effect wears off over

time, so my doctor switches me to other antibiotics, including Flagyl.

If you've noticed improvement, then hang in there! I've been trying to

find the winning drug combo for me for over 3 years.

Jessie

>

> I am new to this list. Was diagnosed with Lyme about 8 months ago and

> started treatment, though haven't felt well for about 3 years before

that.

> I also tested positive for Babezia and am taking Mepron. I have now

been on

> various combo's of antibiotics for these 8 months. I am much more

> functional now but still don't feel good. Still have the brain fog

which is

> really my biggest problem. Still also go through periods of more acute

> sickness where I don't do very much at all.

>

>

>

> My questions - what treatments seem to be working best for people? Is

> everyone on this long-term antibiotic therapy? I am ON meds for 4

weeks,

> then OFF for 1-2 weeks, and then the cycle starts over. I am on the

same

> drug regimens for 2 months at a time and then the antibiotics are

switched.

> I have used Biaxin, Augmentin, Azithromycin, Clindamycin and Flagyll.

>

>

>

> Does this sound appropriate and is this aggressive enough or are there

> others that are being treated more aggressively?

>

>

>

> Thanks!

>

>

>

[Guest guest]

Thanks for your reply..Is anyone here able to STOP taking antibiotics? Can

we ever stop?

_____

From: [mailto: ] On Behalf

Of Jessie MacMillan

Sent: Saturday, May 20, 2006 1:08 PM

Subject: [ ] Re: Protocol for treating Lyme?

,

This sounds like a very reasonable protocol. If you were sick for 3

years prior to diagnosis, it can take a long time to recover.

Some people are being treated with IV antibiotics, although some

doctors believe that oral antibiotics now work just as well.

Everyone seems to respond uniquely to antibiotics. I've been on quite

a few different antibiotics and antibiotic combinations. I feel best

when I'm taking Biaxin & Plaquenil, but the effect wears off over

time, so my doctor switches me to other antibiotics, including Flagyl.

If you've noticed improvement, then hang in there! I've been trying to

find the winning drug combo for me for over 3 years.

Jessie

[Guest guest]

,

You will find two different kinds of folks within the Lyme disease community.

Some will say you have to go on and stay on antibiotics for a long time,

possibly forever. And most of the rest will say you can completely treat and

cure Lyme using alternative treatments only. I am somewhat rare in this

community because I believe one needs antibiotics, but as time goes on they will

also need to go off the antibiotics to achieve maximum health.

I was on many different kinds of antibiotics, including IVs, for ten years. I

have now been off antibiotics for five years and I continue to improve in many

ways.

It was not easy. Every time I went off antibiotics I went into what honestly

felt like a relapse. All the symptoms would come back some harder than ever.

So for many years I just went back on antibiotics after being off them for a few

weeks at most.

Then about five years ago I decided I was done with antibiotics. They were

causing more harm than good at that time. (They were causing damage to my

nerves and GI system.) It was difficult. Those close to me thought I might die

or become so ill I would need full time care. And I did get sick. The symptoms

came back. But I persevered and amazingly, the symptoms began to get better and

go away without any natural or western medications. After six months of being

off antibiotics I was at the same place physically as I had been when I was on

them.

Because I want to stay off antibiotics I have used natural supplements under the

guidance of a licensed Naturopathic Physician. I still use some

synthetic-western medications when I need to and one I take every day. I am

still improving. It is slow, as slow as it was while I was on antibiotics, but

in many ways I feel so much better emotionally being off the antibiotics. (And

the mind is an important component to getting better.) My GI problems have gone

away and when I have nerve issues I know they aren't being caused by my

antibiotics. It's good to know that I'm not causing myself harm!

Going off antibiotics is completely possible! BUT - it needs to be done with

care! You need to maintain a close relationship with your physician if you

choose to go off your antibiotics. And I recommend, and I am NOT a doctor, that

one stays on antibiotics for 2 - 3 years before going off them. This is a tough

spirochete to eradicate, if eradication is even possible. (That's up for

debate.) However, we know you can't kill all the spirochetes in a few short

months. One needs serious treatment first.

If one has been infected for a long time prior to treatment, there may be some

permanent damage done that no amount of antibiotics will fix. That can be hard

for us to admit and discover. Until one stops taking antibiotics which impede

the immune system a bit, they won't know if they feel better due to the

anti-inflammation properties of the antibiotics. The longer the infection was

not diagnosed usually means longer antibiotic treatment.

If you want to go off antibiotics first you need to discuss the possibility with

the doctor who has prescribed them for you. Hopefully they understand Lyme

disease and will give you educated reasons for staying on or going off them.

Then prepare to feel worse for a few weeks or a few months. Then, and I truly

believe in this, find yourself a Naturopathic Physician (ND) to guide you back

to health using natural medicines. (You can actually find an ND at anytime

during your antibiotic treatment for additional help!) NDs can help build up

the immune system so that it works properly again, not too much and not too

little. They can treat diseases, but they are much better at treating the whole

person. (No need to take a multivitamin if you're only deficient in one

vitamin.)

I know that was a little on the long side. I hope it helps you and I hope it

provides you with some hope for the future.

=)

Robynn

RE: [ ] Re: Protocol for treating Lyme?

Thanks for your reply..Is anyone here able to STOP taking antibiotics? Can

we ever stop?

[Guest guest]

Thank you so much - it was very helpful. Though I have been on antibiotics

for 8 months, I have only now joined these support groups. I am a little

discouraged that it seems I will need to be on antibiotics MUCH longer than

I initially thought. Though I feel fair now, I am still on a ton of things

and I do feel that if I stopped, everything would come back.

1. I did lurk on the lymestrategies list for a few days - they all follow

the salt/c protocol which is interesting..Do some people on this list follow

it as well?

2. One thing I was VERY disturbed about, is that on their website, they talk

about and show photos of worms that they say go along with the lyme and have

infested most(?) patients. I now feel so much more itchy like I have bugs

crawling under my skin and I can't even sleep at night! (You may wonder why

I would be so much more concerned with worms than with the bacteria but I

have a worm phobia!) Is all this true? Is there anything anyone can say to

help me get over this psychological distress?!

Thanks so much,

_____

From: [mailto: ] On Behalf

Of Robynn

Sent: Monday, May 22, 2006 2:52 AM

Subject: Re: [ ] Protocol for treating Lyme?

,

You will find two different kinds of folks within the Lyme disease

community. Some will say you have to go on and stay on antibiotics for a

long time, possibly forever. And most of the rest will say you can

completely treat and cure Lyme using alternative treatments only. I am

somewhat rare in this community because I believe one needs antibiotics, but

as time goes on they will also need to go off the antibiotics to achieve

maximum health.

I was on many different kinds of antibiotics, including IVs, for ten years.

I have now been off antibiotics for five years and I continue to improve in

many ways.

It was not easy. Every time I went off antibiotics I went into what

honestly felt like a relapse. All the symptoms would come back some harder

than ever. So for many years I just went back on antibiotics after being

off them for a few weeks at most.

Then about five years ago I decided I was done with antibiotics. They were

causing more harm than good at that time. (They were causing damage to my

nerves and GI system.) It was difficult. Those close to me thought I might

die or become so ill I would need full time care. And I did get sick. The

symptoms came back. But I persevered and amazingly, the symptoms began to

get better and go away without any natural or western medications. After

six months of being off antibiotics I was at the same place physically as I

had been when I was on them.

Because I want to stay off antibiotics I have used natural supplements under

the guidance of a licensed Naturopathic Physician. I still use some

synthetic-western medications when I need to and one I take every day. I am

still improving. It is slow, as slow as it was while I was on antibiotics,

but in many ways I feel so much better emotionally being off the

antibiotics. (And the mind is an important component to getting better.) My

GI problems have gone away and when I have nerve issues I know they aren't

being caused by my antibiotics. It's good to know that I'm not causing

myself harm!

Going off antibiotics is completely possible! BUT - it needs to be done

with care! You need to maintain a close relationship with your physician if

you choose to go off your antibiotics. And I recommend, and I am NOT a

doctor, that one stays on antibiotics for 2 - 3 years before going off them.

This is a tough spirochete to eradicate, if eradication is even possible.

(That's up for debate.) However, we know you can't kill all the spirochetes

in a few short months. One needs serious treatment first.

If one has been infected for a long time prior to treatment, there may be

some permanent damage done that no amount of antibiotics will fix. That can

be hard for us to admit and discover. Until one stops taking antibiotics

which impede the immune system a bit, they won't know if they feel better

due to the anti-inflammation properties of the antibiotics. The longer the

infection was not diagnosed usually means longer antibiotic treatment.

If you want to go off antibiotics first you need to discuss the possibility

with the doctor who has prescribed them for you. Hopefully they understand

Lyme disease and will give you educated reasons for staying on or going off

them. Then prepare to feel worse for a few weeks or a few months. Then,

and I truly believe in this, find yourself a Naturopathic Physician (ND) to

guide you back to health using natural medicines. (You can actually find an

ND at anytime during your antibiotic treatment for additional help!) NDs

can help build up the immune system so that it works properly again, not too

much and not too little. They can treat diseases, but they are much better

at treating the whole person. (No need to take a multivitamin if you're

only deficient in one vitamin.)

I know that was a little on the long side. I hope it helps you and I hope

it provides you with some hope for the future.

=)

Robynn

RE: [ ] Re: Protocol for treating Lyme?

Thanks for your reply..Is anyone here able to STOP taking antibiotics?

Can

we ever stop?

[Guest guest]

Hi ,

my husband and I have stopped taking antibiotics. I was on them for

almost four years and he stopped after two years.

>

> Thanks for your reply..Is anyone here able to STOP taking

antibiotics? Can

> we ever stop?

>

>

>

>

> _____

>

> From: [mailto: ] On

Behalf

> Of Jessie MacMillan

> Sent: Saturday, May 20, 2006 1:08 PM

>

> Subject: [ ] Re: Protocol for treating Lyme?

>

>

>

> ,

>

> This sounds like a very reasonable protocol. If you were sick for 3

> years prior to diagnosis, it can take a long time to recover.

>

> Some people are being treated with IV antibiotics, although some

> doctors believe that oral antibiotics now work just as well.

>

> Everyone seems to respond uniquely to antibiotics. I've been on

quite

> a few different antibiotics and antibiotic combinations. I feel best

> when I'm taking Biaxin & Plaquenil, but the effect wears off over

> time, so my doctor switches me to other antibiotics, including

Flagyl.

>

> If you've noticed improvement, then hang in there! I've been trying

to

> find the winning drug combo for me for over 3 years.

>

> Jessie

>

[Guest guest]

Hi again ,

As to the creepy crawley sensation it can be caused by several

things, Bartonella which is a demyelinating disease, Morgellons

which is a lyme related disease that is still under studied and

Lyme. However I will tell you to focus...if you did not have the

symptoms prior to looking at the pics and reading the articles then

you are probably okay.

Here is an example, If I told you that you where going to walk into

a room filled with spiders you would start jumping before you

entered the door. When in fact you could be walking into an

operating room that is sterile from floor to ceiling...

I am not trying to make lite of your situation, I am also " bug "

phoebic and I also have Bartonella. So as you can imagine it drove

me almost insane the first few months until I could figure out the

culprit.

As to the therapies and treatment modalities I will say that

everyone seems to respond to a different protocol. My theory is that

it has alot to do with you system. If you have high viral titers you

will tend to be worst off. At least that is what I have noticed.

I did not use the salt C therapy. I used Hyperbaric Oxygen, I also

offer the therapy from my home so I am bias...I find that it has

helped me alot. I have not used antibiotics in months and when I was

on them I was on bicillin shots ever three weeks for over a year. It

did take me a year to get to that point as well. So, Yes...you do

have a long road ahead of you.

Follow the links on my home page and you will find

more lyme related sites. Try wildcondors site it is truely very

educational.

Be well and stay safe,

Sudylo RN/CHT

http://www.geocities.com/boejr1/index.html

>

> Thank you so much - it was very helpful. Though I have been on

antibiotics

> for 8 months, I have only now joined these support groups. I am a

little

> discouraged that it seems I will need to be on antibiotics MUCH

longer than

> I initially thought. Though I feel fair now, I am still on a ton

of things

> and I do feel that if I stopped, everything would come back.

>

>

>

> 1. I did lurk on the lymestrategies list for a few days - they all

follow

> the salt/c protocol which is interesting..Do some people on this

list follow

> it as well?

>

>

>

> 2. One thing I was VERY disturbed about, is that on their website,

they talk

> about and show photos of worms that they say go along with the

lyme and have

> infested most(?) patients. I now feel so much more itchy like I

have bugs

> crawling under my skin and I can't even sleep at night! (You may

wonder why

> I would be so much more concerned with worms than with the

bacteria but I

> have a worm phobia!) Is all this true? Is there anything anyone

can say to

> help me get over this psychological distress?!

>

>

>

> Thanks so much,

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ]

On Behalf

> Of Robynn

> Sent: Monday, May 22, 2006 2:52 AM

>

> Subject: Re: [ ] Protocol for treating Lyme?

>

>

>

> ,

>

> You will find two different kinds of folks within the Lyme disease

> community. Some will say you have to go on and stay on

antibiotics for a

> long time, possibly forever. And most of the rest will say you can

> completely treat and cure Lyme using alternative treatments only.

I am

> somewhat rare in this community because I believe one needs

antibiotics, but

> as time goes on they will also need to go off the antibiotics to

achieve

> maximum health.

>

> I was on many different kinds of antibiotics, including IVs, for

ten years.

> I have now been off antibiotics for five years and I continue to

improve in

> many ways.

>

> It was not easy. Every time I went off antibiotics I went into

what

> honestly felt like a relapse. All the symptoms would come back

some harder

> than ever. So for many years I just went back on antibiotics

after being

> off them for a few weeks at most.

>

> Then about five years ago I decided I was done with antibiotics.

They were

> causing more harm than good at that time. (They were causing

damage to my

> nerves and GI system.) It was difficult. Those close to me

thought I might

> die or become so ill I would need full time care. And I did get

sick. The

> symptoms came back. But I persevered and amazingly, the symptoms

began to

> get better and go away without any natural or western

medications. After

> six months of being off antibiotics I was at the same place

physically as I

> had been when I was on them.

>

> Because I want to stay off antibiotics I have used natural

supplements under

> the guidance of a licensed Naturopathic Physician. I still use

some

> synthetic-western medications when I need to and one I take every

day. I am

> still improving. It is slow, as slow as it was while I was on

antibiotics,

> but in many ways I feel so much better emotionally being off the

> antibiotics. (And the mind is an important component to getting

better.) My

> GI problems have gone away and when I have nerve issues I know

they aren't

> being caused by my antibiotics. It's good to know that I'm not

causing

> myself harm!

>

> Going off antibiotics is completely possible! BUT - it needs to

be done

> with care! You need to maintain a close relationship with your

physician if

> you choose to go off your antibiotics. And I recommend, and I am

NOT a

> doctor, that one stays on antibiotics for 2 - 3 years before going

off them.

> This is a tough spirochete to eradicate, if eradication is even

possible.

> (That's up for debate.) However, we know you can't kill all the

spirochetes

> in a few short months. One needs serious treatment first.

>

> If one has been infected for a long time prior to treatment, there

may be

> some permanent damage done that no amount of antibiotics will

fix. That can

> be hard for us to admit and discover. Until one stops taking

antibiotics

> which impede the immune system a bit, they won't know if they feel

better

> due to the anti-inflammation properties of the antibiotics. The

longer the

> infection was not diagnosed usually means longer antibiotic

treatment.

>

> If you want to go off antibiotics first you need to discuss the

possibility

> with the doctor who has prescribed them for you. Hopefully they

understand

> Lyme disease and will give you educated reasons for staying on or

going off

> them. Then prepare to feel worse for a few weeks or a few

months. Then,

> and I truly believe in this, find yourself a Naturopathic

Physician (ND) to

> guide you back to health using natural medicines. (You can

actually find an

> ND at anytime during your antibiotic treatment for additional

help!) NDs

> can help build up the immune system so that it works properly

again, not too

> much and not too little. They can treat diseases, but they are

much better

> at treating the whole person. (No need to take a multivitamin if

you're

> only deficient in one vitamin.)

>

> I know that was a little on the long side. I hope it helps you

and I hope

> it provides you with some hope for the future.

>

> =)

> Robynn

>

> RE: [ ] Re: Protocol for treating Lyme?

>

>

> Thanks for your reply..Is anyone here able to STOP taking

antibiotics?

> Can

> we ever stop?

>

>

>

[Guest guest]

Hi ,

I am on the salt/C protocal, and have been on it for about 8 months, and

am seeing sure but slow improvements. If you have any questions let me know, and

you can email off line.

Makayla

The Sterns <goheels@...> wrote:

Thank you so much - it was very helpful. Though I have been on antibiotics

for 8 months, I have only now joined these support groups. I am a little

discouraged that it seems I will need to be on antibiotics MUCH longer than

I initially thought. Though I feel fair now, I am still on a ton of things

and I do feel that if I stopped, everything would come back.

1. I did lurk on the lymestrategies list for a few days - they all follow

the salt/c protocol which is interesting..Do some people on this list follow

it as well?

2. One thing I was VERY disturbed about, is that on their website, they talk

about and show photos of worms that they say go along with the lyme and have

infested most(?) patients. I now feel so much more itchy like I have bugs

crawling under my skin and I can't even sleep at night! (You may wonder why

I would be so much more concerned with worms than with the bacteria but I

have a worm phobia!) Is all this true? Is there anything anyone can say to

help me get over this psychological distress?!

Thanks so much,

[Guest guest]

Makayla,

I'm curious about the salt/C protocol. My LLMD mentioned it the last

time I saw him as a possibility. All I know about it is that you take

in a lot of salt -- I'm very salt-sensitive, so I'm wary. I'll bet

other people in the group are curious about the salt/C protocol; if

you could outline it for us, I (and probably others) would appreciat it.

Jessie

>

> Hi ,

> I am on the salt/C protocal, and have been on it for about 8

months, and am seeing sure but slow improvements. If you have any

questions let me know, and you can email off line.

> Makayla

>

[Guest guest]

i was just curious.. did u stop cuz u were feeling better? cured?

cuz of side effects? or figured they werent helping?

thxs

cfsguy

---- original ------

> Hi ,

>

> my husband and I have stopped taking antibiotics. I was on them

for

> almost four years and he stopped after two years.

>

>

>

>

>

>

> >

> > Thanks for your reply..Is anyone here able to STOP taking

> antibiotics? Can

> > we ever stop?

> >

> >