Re: thoughts on new symptom?

[Guest guest]

I can tell you that my younger daughter had that one pigeon toe thing from the

time she could walk, or at least from about age 5 or so. It resolved as she got

better, and she is now in a backslide that includes a slight regression in that

regard. Her whole left side was weak.

It oculd be a herx, and most likely its -- the old worse before better thing --

but Lyme definitely can do that to you. Not sure how much a neurologist who is

not LL would be able to do about it, but I think even seeing a non LL

neurologist would give you a sense of what's going on physically.

I know patients who started treatment and became paralyzed altogether before

getting better, and I know it can happen as a herx. If it is numbness, I would

say maybe tindamax and maybe lyem, but if it is overall weaknss as well, I'd say

it is more likely herx/lyme than the drug. The line gets blurred, though,

because the tinda can cause a herx...

So sorry she's going through this. I do think, though, that it will resolve as

she continues treatment. I hope you find the neurologist who can help you.

With you in spirit

Natasha

________________________________

From: likeaspeckofpepper <sandsure@...>

Sent: Tue, February 1, 2011 5:00:28 AM

Subject: [ ] thoughts on new symptom?

Good morning everyone. I am looking for some input into some new developments

with my daughter. I will try to include all that I can but still keep this

short and to the point. My head is spinning.

My daughter started treatment a year and a half ago. Prior to treatment, she

had numbness in her leg and some minor issues with movement. About a month into

treatment, the leg/foot turned in a bit and she had difficulty getting it into a

straight position. She walked like she was a bit " pigeon toed " . This lasted

about a week and resolved.

In late October, tindamax was added to her other 2 meds, 2 days on and 5 off.

In early January, she (we) got the flu. It lasted about a week. I did not give

her the tindamax that week. (really nasty flu) but resumed the dosing schedule

the next week, and it was during this week that she started to complain of her

leg feeling numb. (same leg that turned in way back when) It is now to the

point that she can not lift her foot (her foot wants to stay in a pointed toe

position) and there is decreased strength in the leg. Her llmd said we need to

go to a neurologist.

So...I know that tindamax can cause numbness...and I am afraid that this is a

reaction..however, since she had the episode back in the beginning of treatment,

I guess this new episode could be a herx. Has anyone had numbness with this

med?

Does anyone have any suggestions for a ll neurologist? I am in NJ. I

thank anyone, in advance, who has any thoughts on this situation with my

daughter. She is very, very discouraged and it breaks my heart which I did not

think could break anymore!

Feel free to send me an email if you prefer. sandsure@...

[Guest guest]

Thank you Natasha, so very much...I am feeling a bit overwhelmed.

My gut says it is the lyme, since this symptom was there early on (not this bad

though), resolved and after adding the tindamax reappeared. Her llmd did not

tell us to hold off on the meds. The weakness, movement issue and lack of

feeling was significant enough for concern though. I am trying to find a ll

neurologist but that might be like finding a needle in a haystack. Maybe I will

post something here and see if anyone can send a private email. We can do that

here, right?

Again, thank you for sharing with me. Not sure where you are, but hopefully out

of the path of this nasty winter storm.

>

> I can tell you that my younger daughter had that one pigeon toe thing from the

> time she could walk, or at least from about age 5 or so. It resolved as she

got

> better, and she is now in a backslide that includes a slight regression in

that

> regard. Her whole left side was weak.

>

> It oculd be a herx, and most likely its -- the old worse before better thing

--

> but Lyme definitely can do that to you. Not sure how much a neurologist who

is

> not LL would be able to do about it, but I think even seeing a non LL

> neurologist would give you a sense of what's going on physically.

>

> I know patients who started treatment and became paralyzed altogether before

> getting better, and I know it can happen as a herx. If it is numbness, I

would

> say maybe tindamax and maybe lyem, but if it is overall weaknss as well, I'd

say

> it is more likely herx/lyme than the drug. The line gets blurred, though,

> because the tinda can cause a herx...

>

> So sorry she's going through this. I do think, though, that it will resolve as

> she continues treatment. I hope you find the neurologist who can help you.

>

> With you in spirit

>

> Natasha

>

>

>

>

>

> ________________________________

> From: likeaspeckofpepper <sandsure@...>

>

> Sent: Tue, February 1, 2011 5:00:28 AM

> Subject: [ ] thoughts on new symptom?

>

>

> Good morning everyone. I am looking for some input into some new developments

> with my daughter. I will try to include all that I can but still keep this

> short and to the point. My head is spinning.

>

> My daughter started treatment a year and a half ago. Prior to treatment, she

> had numbness in her leg and some minor issues with movement. About a month

into

> treatment, the leg/foot turned in a bit and she had difficulty getting it into

a

> straight position. She walked like she was a bit " pigeon toed " . This lasted

> about a week and resolved.

>

>

> In late October, tindamax was added to her other 2 meds, 2 days on and 5 off.

> In early January, she (we) got the flu. It lasted about a week. I did not

give

> her the tindamax that week. (really nasty flu) but resumed the dosing schedule

> the next week, and it was during this week that she started to complain of her

> leg feeling numb. (same leg that turned in way back when) It is now to the

> point that she can not lift her foot (her foot wants to stay in a pointed toe

> position) and there is decreased strength in the leg. Her llmd said we need

to

> go to a neurologist.

>

> So...I know that tindamax can cause numbness...and I am afraid that this is a

> reaction..however, since she had the episode back in the beginning of

treatment,

> I guess this new episode could be a herx. Has anyone had numbness with this

> med?

>

>

> Does anyone have any suggestions for a ll neurologist? I am in NJ. I

> thank anyone, in advance, who has any thoughts on this situation with my

> daughter. She is very, very discouraged and it breaks my heart which I did

not

> think could break anymore!

>

> Feel free to send me an email if you prefer. sandsure@...

>

>

>

>

>

[Guest guest]

I agree with Natashia.  Best wishes to you and your daughter.

Good luck, Elaine

________________________________

From: likeaspeckofpepper <sandsure@...>

Sent: Tue, February 1, 2011 8:35:53 AM

Subject: Re: [ ] thoughts on new symptom?

 

Thank you Natasha, so very much...I am feeling a bit overwhelmed.

My gut says it is the lyme, since this symptom was there early on (not this bad

though), resolved and after adding the tindamax reappeared. Her llmd did not

tell us to hold off on the meds. The weakness, movement issue and lack of

feeling was significant enough for concern though. I am trying to find a ll

neurologist but that might be like finding a needle in a haystack. Maybe I will

post something here and see if anyone can send a private email. We can do that

here, right?

Again, thank you for sharing with me. Not sure where you are, but hopefully out

of the path of this nasty winter storm.

>

> I can tell you that my younger daughter had that one pigeon toe thing from the

> time she could walk, or at least from about age 5 or so. It resolved as she

got

>

> better, and she is now in a backslide that includes a slight regression in

that

>

> regard. Her whole left side was weak.

>

> It oculd be a herx, and most likely its -- the old worse before better thing

--

>

> but Lyme definitely can do that to you. Not sure how much a neurologist who is

> not LL would be able to do about it, but I think even seeing a non LL

> neurologist would give you a sense of what's going on physically.

>

> I know patients who started treatment and became paralyzed altogether before

> getting better, and I know it can happen as a herx. If it is numbness, I would

> say maybe tindamax and maybe lyem, but if it is overall weaknss as well, I'd

>say

>

> it is more likely herx/lyme than the drug. The line gets blurred, though,

> because the tinda can cause a herx...

>

> So sorry she's going through this. I do think, though, that it will resolve as

> she continues treatment. I hope you find the neurologist who can help you.

>

> With you in spirit

>

> Natasha

>

>

>

>

>

> ________________________________

> From: likeaspeckofpepper <sandsure@...>

>

> Sent: Tue, February 1, 2011 5:00:28 AM

> Subject: [ ] thoughts on new symptom?

>

>

> Good morning everyone. I am looking for some input into some new developments

> with my daughter. I will try to include all that I can but still keep this

> short and to the point. My head is spinning.

>

> My daughter started treatment a year and a half ago. Prior to treatment, she

> had numbness in her leg and some minor issues with movement. About a month

into

>

> treatment, the leg/foot turned in a bit and she had difficulty getting it into

>a

>

> straight position. She walked like she was a bit " pigeon toed " . This lasted

> about a week and resolved.

>

>

> In late October, tindamax was added to her other 2 meds, 2 days on and 5 off.

> In early January, she (we) got the flu. It lasted about a week. I did not give

> her the tindamax that week. (really nasty flu) but resumed the dosing schedule

> the next week, and it was during this week that she started to complain of her

> leg feeling numb. (same leg that turned in way back when) It is now to the

> point that she can not lift her foot (her foot wants to stay in a pointed toe

> position) and there is decreased strength in the leg. Her llmd said we need to

> go to a neurologist.

>

> So...I know that tindamax can cause numbness...and I am afraid that this is a

> reaction..however, since she had the episode back in the beginning of

>treatment,

>

> I guess this new episode could be a herx. Has anyone had numbness with this

> med?

>

>

> Does anyone have any suggestions for a ll neurologist? I am in NJ. I

> thank anyone, in advance, who has any thoughts on this situation with my

> daughter. She is very, very discouraged and it breaks my heart which I did not

> think could break anymore!

>

> Feel free to send me an email if you prefer. sandsure@...

>

>

>

>

>

[Guest guest]

My son has only been on tindamax for 2 months on weekends, but has never

complained of numbness.

I hope you find some answers!

Hugs

Judy

From: likeaspeckofpepper <sandsure@...>

Subject: [ ] thoughts on new symptom?

Date: Tuesday, February 1, 2011, 8:00 AM

 

Good morning everyone. I am looking for some input into some new developments

with my daughter. I will try to include all that I can but still keep this short

and to the point. My head is spinning.

My daughter started treatment a year and a half ago. Prior to treatment, she had

numbness in her leg and some minor issues with movement. About a month into

treatment, the leg/foot turned in a bit and she had difficulty getting it into a

straight position. She walked like she was a bit " pigeon toed " . This lasted

about a week and resolved.

In late October, tindamax was added to her other 2 meds, 2 days on and 5 off. In

early January, she (we) got the flu. It lasted about a week. I did not give her

the tindamax that week. (really nasty flu) but resumed the dosing schedule the

next week, and it was during this week that she started to complain of her leg

feeling numb. (same leg that turned in way back when) It is now to the point

that she can not lift her foot (her foot wants to stay in a pointed toe

position) and there is decreased strength in the leg. Her llmd said we need to

go to a neurologist.

So...I know that tindamax can cause numbness...and I am afraid that this is a

reaction..however, since she had the episode back in the beginning of treatment,

I guess this new episode could be a herx. Has anyone had numbness with this med?

Does anyone have any suggestions for a ll neurologist? I am in NJ. I

thank anyone, in advance, who has any thoughts on this situation with my

daughter. She is very, very discouraged and it breaks my heart which I did not

think could break anymore!

Feel free to send me an email if you prefer. sandsure@...

[Guest guest]

I know it is so hard to sort through all the symptoms of Lyme disease and

coinfections and not know what is what. I don't have any suggestions to share,

just experience.

The three of us are all on tindamax and don't have any issues with it. We only

take it 2 days a week. Is that your daughters regimen? My sister takes tindamax

3 weeks at a time and doesn't have numbness.

My youngest has had the weirdest symptoms with bones and muscles for 3 years. No

one has been able to help from orthopedists to neurologists. A lot of the things

cleared up with IV antibiotics and ILADS protocol for Lyme.

Herxing can do the weirdest things and no two people are the same. Do you have a

good detox on board? Maybe something to helpl her rid the toxins?

Keep in touch and let us know how it goes.

I think Natasha is in California. Here in Ohio it is coming down hard. We are on

our second snow day.

Kari

[Guest guest]

Hi Kari,

Thank you so much for sharing your experiences with the tindamax. She is on it

2 days a week. She did have issues with this leg after starting treatment and

then it went away. I was thinking, she had the flu with a very high fever. This

numbness and lack of ability to move the leg came on about 5 days after the

fever broke. I now lyme bugs do not like heat, so maybe that stirred things up.

She was on the tindamax for 2 months with no issues (well, there were psych

issues.. I should chime in on the other active tindamax thread here) with

numbness or movement. I am going to call the llmd and see if holding off on the

tindamax would be ok until she sees a neurologist. I usually am pretty strong

and keep my chin up, but this is a tough backslide for her as she was finally up

and out of bed once in a while and now when she is, she is having a hard time

walking and stairs are downright dangerous. She already has vestibular damage

so balance is an issue already. I need my big girl pants!

Stay safe in this nasty weather.

>

> I know it is so hard to sort through all the symptoms of Lyme disease and

coinfections and not know what is what. I don't have any suggestions to share,

just experience.

> The three of us are all on tindamax and don't have any issues with it. We only

take it 2 days a week. Is that your daughters regimen? My sister takes tindamax

3 weeks at a time and doesn't have numbness.

> My youngest has had the weirdest symptoms with bones and muscles for 3 years.

No one has been able to help from orthopedists to neurologists. A lot of the

things cleared up with IV antibiotics and ILADS protocol for Lyme.

> Herxing can do the weirdest things and no two people are the same. Do you have

a good detox on board? Maybe something to helpl her rid the toxins?

> Keep in touch and let us know how it goes.

> I think Natasha is in California. Here in Ohio it is coming down hard. We are

on our second snow day.

> Kari

>