Re: When is it safe to stop?? Need to make a decision..

[Guest guest]

My son (11) was diagnosed with Bartonella (positive test) and clinically

diagnosed with Lyme. After the first 3 wk try of antibiotics we saw an

improvement but w/in a few days of finishing the trial, he began regressing. We

immediately restarted and he continued to improve again. After 6 mths he was

doing SO WELL. We stopped the Rifampin (for Bartonella) but continued the Lyme

drugs. Again, within 4 days we saw regression so immediately restarted the

Rifampin. This time, however, he hasn't been able to recover as he did earlier.

The symptoms have become more psyc in nature, mainly anxiety. The doctors say

it's the Bartonella. The regression has been much worse-- longer lasting this

time.

So, I know it is such a financial hardship but we cannot put a price on good

health. We do not see Dr J but I hear he is an amazing doctor. Trust what he

says.

Best wishes and I'm glad your son is doing well. I hope the same for you.

Elaine

[Guest guest]

My daughter has been seeing Dr. J for almost 6 years. She is doing much

better but still needs the abx as she is not symptom free yet. Getting

there I pray!

I would not totally cancel the appt. There may be some things he would

offer to you, or things to look for or to consider that you will miss

out on if you do not see him. BUT what about the alternative of a phone

consult? They do charge for them, and I am not sure how much, but that

would save some money, save travel and not mean missed school. I get as

much and sometimes more out of the phone consults than I do from appts.

as long as I am organized and know what I want to say.

Good luck. This is wonderful news about your son!

Z

> lainamariepedro wrote:

>>

>>

>> My son had the rash, we went to pedi wasted time on the wrong abx b/c

>> he wasnt an llmd. Finally got appt w/ Dr and he was back to

>> himself in 2 wks! He has been symptom free for 3 mos. We have a

>> followup sched w/ Dr jones coming up.

>>

>> The follow up is going to cost 275$ ( I think) and it is going to be

>> a complete day of traveling , another misssed day of school etc.

>>

>> I am kind of considering cancelling...

>>

>> Does anyone have any experience w/ relapse or any experience of

>> children overcoming the disease that would like to share some advice??

>>

>> I feel like he is ready to stop or maybe pulse for a while... but

>> another 275$ at Dr. is steep esp. b/c I havent worked in 7 mos

>> due to lyme and we are having financial challenges...

>>

>> __._,_.__

>>

>>

>>

[Guest guest]

I believe the follow up with Dr. is over $400.(that's what they told me in

Oct)( unless it's a different fee for each child)

Judy

________________________________

From: lainamariepedro <Lainamariepedro@...>

Sent: Sat, January 23, 2010 10:13:38 PM

Subject: [ ] When is it safe to stop?? Need to make a decision..

 

My son had the rash, we went to pedi wasted time on the wrong abx b/c he wasnt

an llmd. Finally got appt w/ Dr and he was back to himself in 2 wks! He

has been symptom free for 3 mos. We have a followup sched w/ Dr jones coming up.

The follow up is going to cost 275$ ( I think) and it is going to be a complete

day of traveling , another misssed day of school etc.

I am kind of considering cancelling.. .

Does anyone have any experience w/ relapse or any experience of children

overcoming the disease that would like to share some advice??

I feel like he is ready to stop or maybe pulse for a while... but another 275$

at Dr. is steep esp. b/c I havent worked in 7 mos due to lyme and we are

having financial challenges.. .

[Guest guest]

How do you feel about the rifampin? Any side effects? My dr. wants to change my

abx and switch me to that... are you guys happy w/ that med?Peace,Laina

From: ecckwalk <ecckwalk@...>

Subject: [ ] Re: When is it safe to stop?? Need to make a

decision..

Date: Saturday, January 23, 2010, 10:31 PM

 

My son (11) was diagnosed with Bartonella (positive test) and clinically

diagnosed with Lyme. After the first 3 wk try of antibiotics we saw an

improvement but w/in a few days of finishing the trial, he began regressing. We

immediately restarted and he continued to improve again. After 6 mths he was

doing SO WELL. We stopped the Rifampin (for Bartonella) but continued the Lyme

drugs. Again, within 4 days we saw regression so immediately restarted the

Rifampin. This time, however, he hasn't been able to recover as he did earlier.

The symptoms have become more psyc in nature, mainly anxiety. The doctors say

it's the Bartonella. The regression has been much worse-- longer lasting this

time.

So, I know it is such a financial hardship but we cannot put a price on good

health. We do not see Dr J but I hear he is an amazing doctor. Trust what he

says.

Best wishes and I'm glad your son is doing well. I hope the same for you.

Elaine

[Guest guest]

My son has been totally fine with the Rifampin. Initially it was fabulous but

I'm not sure it's as effective after 2x of stopping it. It tends to turn your

urine orange which he thinks is pretty cool so be aware of that. Tears/sweat

can also turn color which could make you look like a Gatorade commercial. I

believe a female friend of mine has had some problems with it making her

irritable. I think it can affect your testosterone levels but you'd have to

clarify that-- I'm going off of poor memory.

take care,

Elaine

[Guest guest]

My son's also been on Rifampin for about 1 1/2 years. I was worried about it

based on some indications I saw that it might effect some organ functions (liver

and/or kidney, can't remember exactly). He has been fine on it but I do get

regular bloodwork to check on any side effects.

Good luck,

Patty

[ ] Re: When is it safe to stop?? Need to make a

decision..

My son has been totally fine with the Rifampin. Initially it was fabulous but

I'm not sure it's as effective after 2x of stopping it. It tends to turn your

urine orange which he thinks is pretty cool so be aware of that. Tears/sweat can

also turn color which could make you look like a Gatorade commercial. I believe

a female friend of mine has had some problems with it making her irritable. I

think it can affect your testosterone levels but you'd have to clarify that--

I'm going off of poor memory.

take care,

Elaine

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

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 9.0.730 / Virus Database: 271.1.1/2642 - Release Date: 01/24/10

02:33:00

[Guest guest]

My son also sees Dr. J. We had tried taking him off his antibiotics a few years

ago because he went many months with having very few symptoms and the ones he

had we thought maybe came up when he was fighting off other infections (i.e.

right before he came down with the flu, etc.). Within a few months he relapsed

horribly, and it took us about 9 months to get back on top of it because the

meds he had been on no longer seemed to work. Initially he was only being

treated for Lyme, but after the relapsing experience he was retested for

Mycoplasma Fermentans and was positive. Now he's been treated for that for

about 1 1/2 years.

It's a hard choice. I've actually backed my son off of some meds (with Dr. J's

okay) to see how he does before backing off on more. I'm hoping he is close to

being able to go off of them but very nervous that we might have a repeat

performance of the last time which was very hard.

Good luck,

Patty

[ ] When is it safe to stop?? Need to make a

decision..

My son had the rash, we went to pedi wasted time on the wrong abx b/c he wasnt

an llmd. Finally got appt w/ Dr and he was back to himself in 2 wks! He

has been symptom free for 3 mos. We have a followup sched w/ Dr jones coming up.

The follow up is going to cost 275$ ( I think) and it is going to be a

complete day of traveling , another misssed day of school etc.

I am kind of considering cancelling...

Does anyone have any experience w/ relapse or any experience of children

overcoming the disease that would like to share some advice??

I feel like he is ready to stop or maybe pulse for a while... but another 275$

at Dr. is steep esp. b/c I havent worked in 7 mos due to lyme and we are

having financial challenges...

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

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 9.0.730 / Virus Database: 271.1.1/2642 - Release Date: 01/24/10

02:33:00

[Guest guest]

UGHH! PATTY IT IS SO SCARY....I AM GONNA PRAY ON IT AND HOPE FOR THE BEST..DONT

KNOW WHAT ELSE TO DO.THANKS FOR YOUR HELP

From: Patty Belke <pbelke1@...>

Subject: Re: [ ] When is it safe to stop?? Need to make a

decision..

Date: Sunday, January 24, 2010, 2:22 PM

 

My son also sees Dr. J. We had tried taking him off his antibiotics a few

years ago because he went many months with having very few symptoms and the ones

he had we thought maybe came up when he was fighting off other infections (i.e.

right before he came down with the flu, etc.). Within a few months he relapsed

horribly, and it took us about 9 months to get back on top of it because the

meds he had been on no longer seemed to work. Initially he was only being

treated for Lyme, but after the relapsing experience he was retested for

Mycoplasma Fermentans and was positive. Now he's been treated for that for

about 1 1/2 years.

It's a hard choice. I've actually backed my son off of some meds (with Dr. J's

okay) to see how he does before backing off on more. I'm hoping he is close to

being able to go off of them but very nervous that we might have a repeat

performance of the last time which was very hard.

Good luck,

Patty

[ ] When is it safe to stop?? Need to make a

decision..

My son had the rash, we went to pedi wasted time on the wrong abx b/c he wasnt

an llmd. Finally got appt w/ Dr and he was back to himself in 2 wks! He

has been symptom free for 3 mos. We have a followup sched w/ Dr jones coming up.

The follow up is going to cost 275$ ( I think) and it is going to be a complete

day of traveling , another misssed day of school etc.

I am kind of considering cancelling.. .

Does anyone have any experience w/ relapse or any experience of children

overcoming the disease that would like to share some advice??

I feel like he is ready to stop or maybe pulse for a while... but another 275$

at Dr. is steep esp. b/c I havent worked in 7 mos due to lyme and we are

having financial challenges.. .

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

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 9.0.730 / Virus Database: 271.1.1/2642 - Release Date: 01/24/10

02:33:00

[Guest guest]

My son did not do well on rifampin. I thought it was a really bad herx, but when

we saw Dr. J, after he was already off of it (I had insisted with our previous

doc to stop it after 2 months), Dr. J said he thought it sounded more like a bad

reaction to the med.

I have been taking rifampin for almost 2 months now and have had no problem on

it. I have seen more improvement since adding artemisinin than when I was just

on the rifampin.

Dara

Dara

>

> From: ecckwalk <ecckwalk@...>

> Subject: [ ] Re: When is it safe to stop?? Need to make a

decision..

>

> Date: Saturday, January 23, 2010, 10:31 PM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> My son (11) was diagnosed with Bartonella (positive test) and clinically

diagnosed with Lyme. After the first 3 wk try of antibiotics we saw an

improvement but w/in a few days of finishing the trial, he began regressing. We

immediately restarted and he continued to improve again. After 6 mths he was

doing SO WELL. We stopped the Rifampin (for Bartonella) but continued the Lyme

drugs. Again, within 4 days we saw regression so immediately restarted the

Rifampin. This time, however, he hasn't been able to recover as he did earlier.

The symptoms have become more psyc in nature, mainly anxiety. The doctors say

it's the Bartonella. The regression has been much worse-- longer lasting this

time.

>

>

>

> So, I know it is such a financial hardship but we cannot put a price on good

health. We do not see Dr J but I hear he is an amazing doctor. Trust what he

says.

>

>

>

> Best wishes and I'm glad your son is doing well. I hope the same for you.

>

> Elaine

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

My kids have not tried this med so far - I was put on it beginning of December -

I love this med for me - it is helping so much - better days with mind and

body...........

good luck -

Diane

________________________________

From: laina pedro <Lainamariepedro@...>

Sent: Sun, January 24, 2010 11:32:21 AM

Subject: Re: [ ] Re: When is it safe to stop?? Need to make a

decision..

 

How do you feel about the rifampin? Any side effects? My dr. wants to change my

abx and switch me to that... are you guys happy w/ that med?Peace,Laina

From: ecckwalk <ecckwalk (DOT) com>

Subject: [ ] Re: When is it safe to stop?? Need to make a

decision..

Date: Saturday, January 23, 2010, 10:31 PM

 

My son (11) was diagnosed with Bartonella (positive test) and clinically

diagnosed with Lyme. After the first 3 wk try of antibiotics we saw an

improvement but w/in a few days of finishing the trial, he began regressing. We

immediately restarted and he continued to improve again. After 6 mths he was

doing SO WELL. We stopped the Rifampin (for Bartonella) but continued the Lyme

drugs. Again, within 4 days we saw regression so immediately restarted the

Rifampin. This time, however, he hasn't been able to recover as he did earlier.

The symptoms have become more psyc in nature, mainly anxiety. The doctors say

it's the Bartonella. The regression has been much worse-- longer lasting this

time.

So, I know it is such a financial hardship but we cannot put a price on good

health. We do not see Dr J but I hear he is an amazing doctor. Trust what he

says.

Best wishes and I'm glad your son is doing well. I hope the same for you.

Elaine

[Guest guest]

thank you all!!

From: darabeth2003 <dara.alewine@...>

Subject: [ ] Re: When is it safe to stop?? Need to make a

decision..

Date: Sunday, January 24, 2010, 4:54 PM

 

My son did not do well on rifampin. I thought it was a really bad herx,

but when we saw Dr. J, after he was already off of it (I had insisted with our

previous doc to stop it after 2 months), Dr. J said he thought it sounded more

like a bad reaction to the med.

I have been taking rifampin for almost 2 months now and have had no problem on

it. I have seen more improvement since adding artemisinin than when I was just

on the rifampin.

Dara

Dara

>

> From: ecckwalk <ecckwalk@.. .>

> Subject: [ ] Re: When is it safe to stop?? Need to make a

decision..

>

> Date: Saturday, January 23, 2010, 10:31 PM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> My son (11) was diagnosed with Bartonella (positive test) and clinically

diagnosed with Lyme. After the first 3 wk try of antibiotics we saw an

improvement but w/in a few days of finishing the trial, he began regressing. We

immediately restarted and he continued to improve again. After 6 mths he was

doing SO WELL. We stopped the Rifampin (for Bartonella) but continued the Lyme

drugs. Again, within 4 days we saw regression so immediately restarted the

Rifampin. This time, however, he hasn't been able to recover as he did earlier.

The symptoms have become more psyc in nature, mainly anxiety. The doctors say

it's the Bartonella. The regression has been much worse-- longer lasting this

time.

>

>

>

> So, I know it is such a financial hardship but we cannot put a price on good

health. We do not see Dr J but I hear he is an amazing doctor. Trust what he

says.

>

>

>

> Best wishes and I'm glad your son is doing well. I hope the same for you.

>

> Elaine

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>