Re: experience with Tindamax

[Guest guest]

Hello,

My son (12) was recently on Tindamax. He has tested positive for Bartonella,

not for Lyme, but was clinically diagnosed with Lyme. He was on Zith and

Rifampin for quite a while then 3-4 days after starting Tindamax, he got a

bulls-eye rash 1-2 " on his thigh. I took a pic of it, sent to to our dr and he

confirmed that it looked like a bulls-eye rash. Very interesting! The rash

gave me some satisfaction in that something must be working-- presuming the

Tindamax.

I was also on Tindamax. Neither of us had any problems. We took it everyday,

can't remember 1 or 2x day.

Best of luck,

Elaine

[Guest guest]

i have been on abx for a year now including tindamax and my llmd knew this

last year, so i don't know how " new " it is. it worked for me too, i am an

adult though

On Sun, Mar 7, 2010 at 8:46 AM, avivag@... <avivag@...>wrote:

>

>

> Hello all,

>

> I recently posted introducing my 11 year old daughter's lyme history. I

> just started her (March 5) on an herbal protocol (Buhner) that she will

> follow along with antibiotics. I chose this protocol because of it's

> flexibility regarding ab's.

>

> We just saw her LLMD yesterday who wants to start her on Tindamax, 2 doses,

> 2 consecutive days/week indefinitely. She's currently on zithromax and

> rifampin (has been on various oral ab's x 1 year). The doctor said they just

> recently discovered that tindamax is able to reach cyst-form borrelia that

> have been driven deep into tissues by other antibiotics such as plaquenil

> (which she took for almost 1 year).

>

> Anyboby have experience tindamax or heard of this " new " application of it?

> How about it's safety? She's also been taking the required probiotics, vit

> D3, multi vit, vit c, ubiquinol (co-enz QH) and fishh oil. She also

> developed asthma last fall and is on flovent (cortisone) inhaler daily.

>

> Thank you,

>

> Aviva

>

>

>

[Guest guest]

Hi Elaine,

Well that is interesting, we'll see what happens when she starts. I

haven't filled the prescription yet, I typically sit on it for a few

days before starting anything new.

She's tested positive for Bartonella also, although her titers have

been fluctuating (neg in Sept, pos in Dec.). She'll be on the

tindamax twice daily for 2 consecutive days/week along with the other

ab's.

Very good to hear you've all tolerated it well, thank you.

How long has your son been getting treatment, what are his lingering

symptoms, what were his presenting symptoms?

Thank you,

Aviva

On Mar 7, 2010, at 10:38 PM, ecckwalk wrote:

> Hello,

> My son (12) was recently on Tindamax. He has tested positive for

> Bartonella, not for Lyme, but was clinically diagnosed with Lyme.

> He was on Zith and Rifampin for quite a while then 3-4 days after

> starting Tindamax, he got a bulls-eye rash 1-2 " on his thigh. I

> took a pic of it, sent to to our dr and he confirmed that it looked

> like a bulls-eye rash. Very interesting! The rash gave me some

> satisfaction in that something must be working-- presuming the

> Tindamax.

>

> I was also on Tindamax. Neither of us had any problems. We took it

> everyday, can't remember 1 or 2x day.

> Best of luck,

> Elaine

>

>

[Guest guest]

Hi le,

Maybe the " new " part for my daughter's LLMD was that plaquenil

encourages cyst formation and he thought it allowed the antibiotics

to reach the spirochetes/cysts hiding within cells by changing

mitochondrial ph(?)(that's what he told me when she started it Feb

'09). Saturday he said he wanted to start her on tindamax because it

can reach those " encysted " forms. Maybe it's just that little bit of

info that is new, not its usefulness in treating tick-borne diseases.

Or maybe he didn't know, I don't know... Anyone?

Best,

Aviva

On Mar 8, 2010, at 12:17 AM, le Handy wrote:

> i have been on abx for a year now including tindamax and my llmd

> knew this

> last year, so i don't know how " new " it is. it worked for me too, i

> am an

> adult though

>

> On Sun, Mar 7, 2010 at 8:46 AM, avivag@...

> <avivag@...>wrote:

>

>>

>>

>> Hello all,

>>

>> I recently posted introducing my 11 year old daughter's lyme

>> history. I

>> just started her (March 5) on an herbal protocol (Buhner) that she

>> will

>> follow along with antibiotics. I chose this protocol because of it's

>> flexibility regarding ab's.

>>

>> We just saw her LLMD yesterday who wants to start her on Tindamax,

>> 2 doses,

>> 2 consecutive days/week indefinitely. She's currently on zithromax

>> and

>> rifampin (has been on various oral ab's x 1 year). The doctor said

>> they just

>> recently discovered that tindamax is able to reach cyst-form

>> borrelia that

>> have been driven deep into tissues by other antibiotics such as

>> plaquenil

>> (which she took for almost 1 year).

>>

>> Anyboby have experience tindamax or heard of this " new "

>> application of it?

>> How about it's safety? She's also been taking the required

>> probiotics, vit

>> D3, multi vit, vit c, ubiquinol (co-enz QH) and fishh oil. She also

>> developed asthma last fall and is on flovent (cortisone) inhaler

>> daily.

>>

>> Thank you,

>>

>> Aviva

>>

>>

>>

>

>

>

[Guest guest]

Hi Aviva,

My son has been treated for just over a yr now. His primary symptom initial

(although he had less bothersome symptoms-- sleep disturbance, some anxiety,

constipation/diar, weight loss-- 20 lbs at age 9) was severe abdominal pain with

no apparent cause. Now, after treatment, he no longer has ANY abdominal/GI

issues but anxiety is a real problem now. Bizarre anxiety and troubling

thoughts. We went to a LL Psyc who said this was all classic Bartonella. this

Bartonella is ugly. He stopped treatment for it once and within 3-4 days

spiraled down and hasn't been able to completely come back out of it. Our LLMD

feels he may need to go on IV meds if things don't improve this summer.

Hope that helps. Best wishes.

Elaine

________________________________

From: Aviva Gerson <avivag@...>

Sent: Mon, March 8, 2010 10:33:12 AM

Subject: Re: [ ] Re: experience with Tindamax

Hi Elaine,

Well that is interesting, we'll see what happens when she starts. I

haven't filled the prescription yet, I typically sit on it for a few

days before starting anything new.

She's tested positive for Bartonella also, although her titers have

been fluctuating (neg in Sept, pos in Dec.). She'll be on the

tindamax twice daily for 2 consecutive days/week along with the other

ab's.

Very good to hear you've all tolerated it well, thank you.

How long has your son been getting treatment, what are his lingering

symptoms, what were his presenting symptoms?

Thank you,

Aviva

On Mar 7, 2010, at 10:38 PM, ecckwalk wrote:

> Hello,

> My son (12) was recently on Tindamax. He has tested positive for

> Bartonella, not for Lyme, but was clinically diagnosed with Lyme.

> He was on Zith and Rifampin for quite a while then 3-4 days after

> starting Tindamax, he got a bulls-eye rash 1-2 " on his thigh. I

> took a pic of it, sent to to our dr and he confirmed that it looked

> like a bulls-eye rash. Very interesting! The rash gave me some

> satisfaction in that something must be working-- presuming the

> Tindamax.

>

> I was also on Tindamax. Neither of us had any problems. We took it

> everyday, can't remember 1 or 2x day.

> Best of luck,

> Elaine

>

>

[Guest guest]

Elaine,

My daughter (11) has also been on various combinations of antibiotics

for 1 year now too. Her initial symptoms were fatigue, persistent

headache and muscle pain. The fatigue lifted within weeks of

antibiotic treatment, the muscle pain (all over) is very slowly

improving, but the headache is a bit stronger now than last summer

(it has never gone away). She had some virus last september that

induced asthma that she never had before (she' on an inhaler now).

Her Lyme titers were clearly positive as were bartonella. I just

started her on an herbal protocol (Buhner)because I really feel that

the antibiotics may not be enough. These herbs are compatible with

antibiotics and are supposed to even enhance their effectiveness.

When she restarted the rifampin for the bartonella 1 month ago, she

had gi upset, but worse she had raging insomnia. She would be

exhausted, yet only sleep 3-4 hours in the night. It lasted about 5

nights. Her LLMD said it was a herx as opposed to an intolerance to

the rifampin. I found that somewhat comforting, kind of like your

bull's eye rash.

So sorry to hear about your son's anxiety and troubling thoughts.

Good thing you have a LL Psych, they must be even harder to come by

than LL pediatricians. At least you have a clear target.

Your comments have been very helpful.

thank you so much,

All the best,

Aviva

On Mar 9, 2010, at 7:56 PM, wrote:

> Hi Aviva,

> My son has been treated for just over a yr now. His primary symptom

> initial (although he had less bothersome symptoms-- sleep

> disturbance, some anxiety, constipation/diar, weight loss-- 20 lbs

> at age 9) was severe abdominal pain with no apparent cause. Now,

> after treatment, he no longer has ANY abdominal/GI issues but

> anxiety is a real problem now. Bizarre anxiety and troubling

> thoughts. We went to a LL Psyc who said this was all classic

> Bartonella. this Bartonella is ugly. He stopped treatment for it

> once and within 3-4 days spiraled down and hasn't been able to

> completely come back out of it. Our LLMD feels he may need to go on

> IV meds if things don't improve this summer.

> Hope that helps. Best wishes.

> Elaine

>

> ________________________________

> From: Aviva Gerson <avivag@...>

>

> Sent: Mon, March 8, 2010 10:33:12 AM

> Subject: Re: [ ] Re: experience with Tindamax

>

> Hi Elaine,

> Well that is interesting, we'll see what happens when she starts. I

> haven't filled the prescription yet, I typically sit on it for a few

> days before starting anything new.

> She's tested positive for Bartonella also, although her titers have

> been fluctuating (neg in Sept, pos in Dec.). She'll be on the

> tindamax twice daily for 2 consecutive days/week along with the other

> ab's.

> Very good to hear you've all tolerated it well, thank you.

> How long has your son been getting treatment, what are his lingering

> symptoms, what were his presenting symptoms?

> Thank you,

> Aviva

> On Mar 7, 2010, at 10:38 PM, ecckwalk wrote:

>

> > Hello,

> > My son (12) was recently on Tindamax. He has tested positive for

> > Bartonella, not for Lyme, but was clinically diagnosed with Lyme.

> > He was on Zith and Rifampin for quite a while then 3-4 days after

> > starting Tindamax, he got a bulls-eye rash 1-2 " on his thigh. I

> > took a pic of it, sent to to our dr and he confirmed that it looked

> > like a bulls-eye rash. Very interesting! The rash gave me some

> > satisfaction in that something must be working-- presuming the

> > Tindamax.

> >

> > I was also on Tindamax. Neither of us had any problems. We took it

> > everyday, can't remember 1 or 2x day.

> > Best of luck,

> > Elaine

> >

> >

>

[Guest guest]

Where did you find an LL psyche ?

>

> > Hello,

> > My son (12) was recently on Tindamax. He has tested positive for

> > Bartonella, not for Lyme, but was clinically diagnosed with Lyme.

> > He was on Zith and Rifampin for quite a while then 3-4 days after

> > starting Tindamax, he got a bulls-eye rash 1-2 " on his thigh. I

> > took a pic of it, sent to to our dr and he confirmed that it looked

> > like a bulls-eye rash. Very interesting! The rash gave me some

> > satisfaction in that something must be working-- presuming the

> > Tindamax.

> >

> > I was also on Tindamax. Neither of us had any problems. We took it

> > everyday, can't remember 1 or 2x day.

> > Best of luck,

> > Elaine

> >

> >

>

[Guest guest]

Edmonds, Washington. Near Seattle.

________________________________

From: Tiffanie <tiffanies_towing@...>

Sent: Wed, March 10, 2010 7:00:10 AM

Subject: Re: [ ] Re: experience with Tindamax

Where did you find an LL psyche ?

>

> > Hello,

> > My son (12) was recently on Tindamax. He has tested positive for

> > Bartonella, not for Lyme, but was clinically diagnosed with Lyme.

> > He was on Zith and Rifampin for quite a while then 3-4 days after

> > starting Tindamax, he got a bulls-eye rash 1-2 " on his thigh. I

> > took a pic of it, sent to to our dr and he confirmed that it looked

> > like a bulls-eye rash. Very interesting! The rash gave me some

> > satisfaction in that something must be working-- presuming the

> > Tindamax.

> >

> > I was also on Tindamax. Neither of us had any problems. We took it

> > everyday, can't remember 1 or 2x day.

> > Best of luck,

> > Elaine

> >

> >

>

[Guest guest]

Wow !!

>

> > Hello,

> > My son (12) was recently on Tindamax. He has tested positive for

> > Bartonella, not for Lyme, but was clinically diagnosed with Lyme.

> > He was on Zith and Rifampin for quite a while then 3-4 days after

> > starting Tindamax, he got a bulls-eye rash 1-2 " on his thigh. I

> > took a pic of it, sent to to our dr and he confirmed that it looked

> > like a bulls-eye rash. Very interesting! The rash gave me some

> > satisfaction in that something must be working-- presuming the

> > Tindamax.

> >

> > I was also on Tindamax. Neither of us had any problems. We took it

> > everyday, can't remember 1 or 2x day.

> > Best of luck,

> > Elaine

> >

> >

>