Re: 5 year old with motor tics - anyone else? advice?

[Guest guest]

>

> Hi all,

>

> This is my first post. My 5 year old son was just diagnosed with Lyme 2 weeks

ago. His primary issue is neurological. He developed a motor tic (mouth

stretching) approximately 6 months after the tick bites and has had several

others since then. Obviously, it has taken a long time to 'connect the dots' to

Lyme. I had never heard of Lyme causing motor and vocal tics. I know, even

with Lyme, this is a more unusual presentation. Does anyone else's child have

motor/vocal tics due to Lyme? If so, any suggestions for treatment?

>

> We have been to see an LLMD and he put my son on oral amoxicillin. I did

mention to the doc that we had seen an improvement in my son's motor tics toward

the end of abx treatment for other illnesses (strep, URI) last fall, so that

might be why. However, my son has been on the amox. for a little over 2 weeks

now and there is NO improvement in his motor tics this time. After the last

round of abx in December (for URI... 10 day course), his motor tics came back

worse than ever before and I wonder if it's because the borrelia were pissed at

being attacked and came back even stronger afterward.

>

> I've read that when there is neuro involvement due to Lyme, IV antibiotics are

usually used. I'm a little leery of IV because of the risks, but I wonder if we

don't see improvement and need to go to IV, are we making it worse by trying

orals first?? I guess I just don't know if orals can ever be as effective as

IV. Does it just take longer, or is there no way orals can ever penetrate as

well?

>

> Any advice would be appreciated!

>

My son also had facial tics. He has had them for over 5 years. I took us until

this past October to finally convince the Dr to test for Lyme. He has been on

oral abx for almost 6 months and very rarely tics anymore.

Make sure your child is on probiotics. VERY important. There are lots of

childrens probiotics out there. Also, try warm (not hot) baths with 1 cup epsom

salt. Let your child soak for 15 min. Lyme robs the body of magnesium which

could also be whats causing motor tics. (these are just some thoughts and

things I have found out about along the way - I am NOT a medical professional -

always consult with a physician).

Consult with your Dr about giving oral magnesium.

If you can get your child to eat foods that are rich in magnesium, that would

really be the best way. Broccoli, halibut, nuts. I can get my son to eat

broccoli if its covered in ranch dressing.

Stress, anxiety, and being tired will also trigger motor tics.

[Guest guest]

Hi,

My son also has motor and vocal tics from Lyme and/or Mycoplasma Fermentans.

The antibiotics do help but we are still fighting this battle and the tics are

the only symptom that still remains -- they are much, much less frequent and

severe now then when he was initially infected and he now has many days that I

don't see any tics, or just very few. Very rarely now he has a day when they

are very noticeable. We also noticed at first that the antibiotics were very

effective at making them go away (after initially making them much worse for a

couple of days which I later realized was a Herx reaction). My son initially

had antibiotics on a stop and go basis because the doctors didn't believe he had

Lyme, and because he also tested positive for strep -- and they thought 10 -12

days of antibiotics would cure him if he did have lyme - ha! I think the

initial small doses of antibiotics killed off some of the infection but gave the

remaining bacteria a chance to build up and become stronger. Anyway, I also

asked our llmd about the need for IV antibiotics initially because I had heard

the same things you did. His LLMD said he prefers to start with oral

antibiotics because the IV is so expensive and he feels it's fine to treat with

oral as long as you are seeing progress. It also seems less traumatic for the

kids (in my opinion).

Something to keep in mind is that my son initially tested negative for M.

Fermentans and his doctor decided to retest him for this after a couple of years

and he indicated that many of his patients that present with tics also have M.

Fermentans (which needs to be treated with different meds than Lyme). Sure

enough my son tested positive the second time around.

Also, my son was initially just treated with Amoxicillan, and then switched to

Zythromax. Once we were with our LLMD, he has been on zythromax along with some

other meds (at one time it was zyth and amox, at other times it was zyth and

omnicef, or zyth and bactrim... and now with the m. fermentans he is on zyth and

rifampin). I'm guessing from what you posted that the amoxicillan may not be

strong enough on it's own anymore. I'd suggest you call your LLMD and let him

know you aren't seeing any improvement in the tics with that medicine and see

what he says.

Good luck and let me know if I can be of any further help. I know the motor and

vocal tics can be very troublesome at times.

All my best,

Patty

[ ] 5 year old with motor tics - anyone else? advice?

Hi all,

This is my first post. My 5 year old son was just diagnosed with Lyme 2 weeks

ago. His primary issue is neurological. He developed a motor tic (mouth

stretching) approximately 6 months after the tick bites and has had several

others since then. Obviously, it has taken a long time to 'connect the dots' to

Lyme. I had never heard of Lyme causing motor and vocal tics. I know, even with

Lyme, this is a more unusual presentation. Does anyone else's child have

motor/vocal tics due to Lyme? If so, any suggestions for treatment?

We have been to see an LLMD and he put my son on oral amoxicillin. I did

mention to the doc that we had seen an improvement in my son's motor tics toward

the end of abx treatment for other illnesses (strep, URI) last fall, so that

might be why. However, my son has been on the amox. for a little over 2 weeks

now and there is NO improvement in his motor tics this time. After the last

round of abx in December (for URI... 10 day course), his motor tics came back

worse than ever before and I wonder if it's because the borrelia were pissed at

being attacked and came back even stronger afterward.

I've read that when there is neuro involvement due to Lyme, IV antibiotics are

usually used. I'm a little leery of IV because of the risks, but I wonder if we

don't see improvement and need to go to IV, are we making it worse by trying

orals first?? I guess I just don't know if orals can ever be as effective as IV.

Does it just take longer, or is there no way orals can ever penetrate as well?

Any advice would be appreciated!

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

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 9.0.791 / Virus Database: 271.1.1/2775 - Release Date: 03/28/10

02:32:00

[Guest guest]

Hi Patty,

Thanks for your response. How old is your son and how long has he been treated

by an LLMD? How long was he infected before you realized it was Lyme and

started treating it? My son's tick bites were in May '08, so it has been almost

2 years.

I am encouraged to hear that your son's tics are much improved now, but it

sounds like it has been a long journey to get there. I was so hoping for a

quick recovery... and by quick, I mean 3-4 months. Not sure what this journey

holds for us, but I appreciate hearing from others who've 'been down this road'.

I notice you are in MD. Is that where your LLMD is? I'm in southern VA. I'm

considering a trip to PA to see Dr. C. for a 2nd opinion on treatment approach.

>

> Hi,

>

> My son also has motor and vocal tics from Lyme and/or Mycoplasma Fermentans.

The antibiotics do help but we are still fighting this battle and the tics are

the only symptom that still remains -- they are much, much less frequent and

severe now then when he was initially infected and he now has many days that I

don't see any tics, or just very few. Very rarely now he has a day when they

are very noticeable. We also noticed at first that the antibiotics were very

effective at making them go away (after initially making them much worse for a

couple of days which I later realized was a Herx reaction). My son initially

had antibiotics on a stop and go basis because the doctors didn't believe he had

Lyme, and because he also tested positive for strep -- and they thought 10 -12

days of antibiotics would cure him if he did have lyme - ha! I think the

initial small doses of antibiotics killed off some of the infection but gave the

remaining bacteria a chance to build up and become stronger. Anyway, I also

asked our llmd about the need for IV antibiotics initially because I had heard

the same things you did. His LLMD said he prefers to start with oral

antibiotics because the IV is so expensive and he feels it's fine to treat with

oral as long as you are seeing progress. It also seems less traumatic for the

kids (in my opinion).

>

> Something to keep in mind is that my son initially tested negative for M.

Fermentans and his doctor decided to retest him for this after a couple of years

and he indicated that many of his patients that present with tics also have M.

Fermentans (which needs to be treated with different meds than Lyme). Sure

enough my son tested positive the second time around.

>

> Also, my son was initially just treated with Amoxicillan, and then switched to

Zythromax. Once we were with our LLMD, he has been on zythromax along with some

other meds (at one time it was zyth and amox, at other times it was zyth and

omnicef, or zyth and bactrim... and now with the m. fermentans he is on zyth and

rifampin). I'm guessing from what you posted that the amoxicillan may not be

strong enough on it's own anymore. I'd suggest you call your LLMD and let him

know you aren't seeing any improvement in the tics with that medicine and see

what he says.

>

> Good luck and let me know if I can be of any further help. I know the motor

and vocal tics can be very troublesome at times.

>

> All my best,

> Patty

>

> [ ] 5 year old with motor tics - anyone else?

advice?

>

>

>

> Hi all,

>

> This is my first post. My 5 year old son was just diagnosed with Lyme 2

weeks ago. His primary issue is neurological. He developed a motor tic (mouth

stretching) approximately 6 months after the tick bites and has had several

others since then. Obviously, it has taken a long time to 'connect the dots' to

Lyme. I had never heard of Lyme causing motor and vocal tics. I know, even with

Lyme, this is a more unusual presentation. Does anyone else's child have

motor/vocal tics due to Lyme? If so, any suggestions for treatment?

>

> We have been to see an LLMD and he put my son on oral amoxicillin. I did

mention to the doc that we had seen an improvement in my son's motor tics toward

the end of abx treatment for other illnesses (strep, URI) last fall, so that

might be why. However, my son has been on the amox. for a little over 2 weeks

now and there is NO improvement in his motor tics this time. After the last

round of abx in December (for URI... 10 day course), his motor tics came back

worse than ever before and I wonder if it's because the borrelia were pissed at

being attacked and came back even stronger afterward.

>

> I've read that when there is neuro involvement due to Lyme, IV antibiotics

are usually used. I'm a little leery of IV because of the risks, but I wonder if

we don't see improvement and need to go to IV, are we making it worse by trying

orals first?? I guess I just don't know if orals can ever be as effective as IV.

Does it just take longer, or is there no way orals can ever penetrate as well?

>

> Any advice would be appreciated!

>

>

>

>

>

>

> ------------------------------------------------------------------------------

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 9.0.791 / Virus Database: 271.1.1/2775 - Release Date: 03/28/10

02:32:00

>

>

>

[Guest guest]

Hi ,

My 8 yr old son was diagnosed with lyme in October. He too has  motor and vocal

tics, as well as ocd symptoms.It took us a very long time to connect the dots

seeing he started with ocd symptoms at age 4 and tics at age 6. He was also just

diagnosed with pandas in January.

My son has been on Zithromax and Rifampin for almost 6 months now, as well as

abilify and tenex for his tics and ocd symptoms. We are also adding Flagyl next

week after we come back from a trip. My son's tics have greatly improved after

being on the antibiotics for about 4 months. He too has more psychological

issues than physical with his lyme. (which are harder to treat) My LLMD said to

give him another year or so on the orals before we go to IV , although he did

mention that IVIG would help my son due ot the fact of the pandas.

I think each case is so individual that unfortunately it's trial and error.

 Just know you are not alone!!

Hugs

Judy

________________________________

From: " mbnienaber@... " <mbnienaber@...>

Sent: Sun, March 28, 2010 2:05:13 PM

Subject: [ ] 5 year old with motor tics - anyone else? advice?

 

Hi all,

This is my first post. My 5 year old son was just diagnosed with Lyme 2 weeks

ago. His primary issue is neurological. He developed a motor tic (mouth

stretching) approximately 6 months after the tick bites and has had several

others since then. Obviously, it has taken a long time to 'connect the dots' to

Lyme. I had never heard of Lyme causing motor and vocal tics. I know, even with

Lyme, this is a more unusual presentation. Does anyone else's child have

motor/vocal tics due to Lyme? If so, any suggestions for treatment?

We have been to see an LLMD and he put my son on oral amoxicillin. I did mention

to the doc that we had seen an improvement in my son's motor tics toward the end

of abx treatment for other illnesses (strep, URI) last fall, so that might be

why. However, my son has been on the amox. for a little over 2 weeks now and

there is NO improvement in his motor tics this time. After the last round of abx

in December (for URI... 10 day course), his motor tics came back worse than ever

before and I wonder if it's because the borrelia were pissed at being attacked

and came back even stronger afterward.

I've read that when there is neuro involvement due to Lyme, IV antibiotics are

usually used. I'm a little leery of IV because of the risks, but I wonder if we

don't see improvement and need to go to IV, are we making it worse by trying

orals first?? I guess I just don't know if orals can ever be as effective as IV.

Does it just take longer, or is there no way orals can ever penetrate as well?

Any advice would be appreciated!

[Guest guest]

My son also had facial tics.  He has had them for over 5 years.  I took

us until this past October to finally convince the Dr to test for Lyme. 

He has been on oral abx for almost 6 months and very rarely tics

anymore.  We have found that supplementing magnesium has worked wonders.

Make sure your child is on probiotics.  VERY

important.  Also, give your child warm (not hot) baths with 1 cup epsom

salt.   Let your child soak for 15 min.   Lyme robs the body of

magnesium which could also be whats causing motor tics. (I am not a medical

professional, just passing along what I have found out along the way, always

consult with your medical doctor first).  A lack of magnesium can cause tremors

& muscle twitches.  That is why after strenuous exercise, it is suggested you

take a bath with epsom salt.

Consult

with your Dr about giving oral magnesium.

If you can get your

child to eat foods that are rich in magnesium, that would really be the

best way.  Broccoli,

halibut, nuts.  I can get my son to eat broccoli if its covered in ranch

dressing.

Stress,

anxiety, and being tired will also trigger motor tics.

Hopefully I have posted this right, this is my 3rd attempt to do so! 

From: Patty Belke <pbelke1@...>

Subject: Re: [ ] 5 year old with motor tics - anyone else?

advice?

Date: Sunday, March 28, 2010, 4:52 PM

 

Hi,

My son also has motor and vocal tics from Lyme and/or Mycoplasma Fermentans.

The antibiotics do help but we are still fighting this battle and the tics are

the only symptom that still remains -- they are much, much less frequent and

severe now then when he was initially infected and he now has many days that I

don't see any tics, or just very few. Very rarely now he has a day when they

are very noticeable. We also noticed at first that the antibiotics were very

effective at making them go away (after initially making them much worse for a

couple of days which I later realized was a Herx reaction). My son initially

had antibiotics on a stop and go basis because the doctors didn't believe he had

Lyme, and because he also tested positive for strep -- and they thought 10 -12

days of antibiotics would cure him if he did have lyme - ha! I think the

initial small doses of antibiotics killed off some of the infection but gave the

remaining bacteria a chance

to build up and become stronger. Anyway, I also asked our llmd about the need

for IV antibiotics initially because I had heard the same things you did. His

LLMD said he prefers to start with oral antibiotics because the IV is so

expensive and he feels it's fine to treat with oral as long as you are seeing

progress. It also seems less traumatic for the kids (in my opinion).

Something to keep in mind is that my son initially tested negative for M.

Fermentans and his doctor decided to retest him for this after a couple of years

and he indicated that many of his patients that present with tics also have M.

Fermentans (which needs to be treated with different meds than Lyme). Sure

enough my son tested positive the second time around.

Also, my son was initially just treated with Amoxicillan, and then switched to

Zythromax. Once we were with our LLMD, he has been on zythromax along with some

other meds (at one time it was zyth and amox, at other times it was zyth and

omnicef, or zyth and bactrim... and now with the m. fermentans he is on zyth and

rifampin). I'm guessing from what you posted that the amoxicillan may not be

strong enough on it's own anymore. I'd suggest you call your LLMD and let him

know you aren't seeing any improvement in the tics with that medicine and see

what he says.

Good luck and let me know if I can be of any further help. I know the motor and

vocal tics can be very troublesome at times.

All my best,

Patty

[ ] 5 year old with motor tics - anyone else? advice?

Hi all,

This is my first post. My 5 year old son was just diagnosed with Lyme 2 weeks

ago. His primary issue is neurological. He developed a motor tic (mouth

stretching) approximately 6 months after the tick bites and has had several

others since then. Obviously, it has taken a long time to 'connect the dots' to

Lyme. I had never heard of Lyme causing motor and vocal tics. I know, even with

Lyme, this is a more unusual presentation. Does anyone else's child have

motor/vocal tics due to Lyme? If so, any suggestions for treatment?

We have been to see an LLMD and he put my son on oral amoxicillin. I did mention

to the doc that we had seen an improvement in my son's motor tics toward the end

of abx treatment for other illnesses (strep, URI) last fall, so that might be

why. However, my son has been on the amox. for a little over 2 weeks now and

there is NO improvement in his motor tics this time. After the last round of abx

in December (for URI... 10 day course), his motor tics came back worse than ever

before and I wonder if it's because the borrelia were pissed at being attacked

and came back even stronger afterward.

I've read that when there is neuro involvement due to Lyme, IV antibiotics are

usually used. I'm a little leery of IV because of the risks, but I wonder if we

don't see improvement and need to go to IV, are we making it worse by trying

orals first?? I guess I just don't know if orals can ever be as effective as IV.

Does it just take longer, or is there no way orals can ever penetrate as well?

Any advice would be appreciated!

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

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 9.0.791 / Virus Database: 271.1.1/2775 - Release Date: 03/28/10

02:32:00

[Guest guest]

Hi All,

My daughter who is 8 years old has Lyme as well as PANDAS. Both of these

illnesses manifest themselves with the same symptoms ­ motor and vocal tics,

anxiety and anger/rage which makes it difficult to decipher what is what.

She is presently being treated by a pediatric neurologist who is managing

her PANDAS and a Lyme Specialist who is managing her Lyme. She is taking

250mg of Zithromax which she has been on for about 6 months and will

probably be on until she hits puberty to protect her from other cases of

Strep. She just finished Omnicef and is now starting Bactrum and this

weekend begins Flagicil. In addition, she is taking two brain supplements to

help with her brain inflammation.

We plan to do IVIG in about two weeks which will give our daughter a major

influx of donor antibodies. These antibodies should in essence take over her

system and help her fight off Strep as well as the Lyme.

Best,

[Guest guest]

To learn more about PANDAS, go to http://www.pandasnetwork.org/

Best,

[Guest guest]

Hi Patty,

How long has your son been in treatment and how long was he infected before

treatment began? I'm glad to hear you are seeing significant improvement. It

gives me hope!

I called my son's LLMD today to ask about switching to a different abx. I will

mention the m. fermentans and see what he thinks.

Thanks for the info!!

Beth

>

> Hi,

>

> My son also has motor and vocal tics from Lyme and/or Mycoplasma Fermentans.

The antibiotics do help but we are still fighting this battle and the tics are

the only symptom that still remains -- they are much, much less frequent and

severe now then when he was initially infected and he now has many days that I

don't see any tics, or just very few. Very rarely now he has a day when they

are very noticeable. We also noticed at first that the antibiotics were very

effective at making them go away (after initially making them much worse for a

couple of days which I later realized was a Herx reaction). My son initially

had antibiotics on a stop and go basis because the doctors didn't believe he had

Lyme, and because he also tested positive for strep -- and they thought 10 -12

days of antibiotics would cure him if he did have lyme - ha! I think the

initial small doses of antibiotics killed off some of the infection but gave the

remaining bacteria a chance to build up and become stronger. Anyway, I also

asked our llmd about the need for IV antibiotics initially because I had heard

the same things you did. His LLMD said he prefers to start with oral

antibiotics because the IV is so expensive and he feels it's fine to treat with

oral as long as you are seeing progress. It also seems less traumatic for the

kids (in my opinion).

>

> Something to keep in mind is that my son initially tested negative for M.

Fermentans and his doctor decided to retest him for this after a couple of years

and he indicated that many of his patients that present with tics also have M.

Fermentans (which needs to be treated with different meds than Lyme). Sure

enough my son tested positive the second time around.

>

> Also, my son was initially just treated with Amoxicillan, and then switched to

Zythromax. Once we were with our LLMD, he has been on zythromax along with some

other meds (at one time it was zyth and amox, at other times it was zyth and

omnicef, or zyth and bactrim... and now with the m. fermentans he is on zyth and

rifampin). I'm guessing from what you posted that the amoxicillan may not be

strong enough on it's own anymore. I'd suggest you call your LLMD and let him

know you aren't seeing any improvement in the tics with that medicine and see

what he says.

>

> Good luck and let me know if I can be of any further help. I know the motor

and vocal tics can be very troublesome at times.

>

> All my best,

> Patty

>

> [ ] 5 year old with motor tics - anyone else?

advice?

>

>

>

> Hi all,

>

> This is my first post. My 5 year old son was just diagnosed with Lyme 2

weeks ago. His primary issue is neurological. He developed a motor tic (mouth

stretching) approximately 6 months after the tick bites and has had several

others since then. Obviously, it has taken a long time to 'connect the dots' to

Lyme. I had never heard of Lyme causing motor and vocal tics. I know, even with

Lyme, this is a more unusual presentation. Does anyone else's child have

motor/vocal tics due to Lyme? If so, any suggestions for treatment?

>

> We have been to see an LLMD and he put my son on oral amoxicillin. I did

mention to the doc that we had seen an improvement in my son's motor tics toward

the end of abx treatment for other illnesses (strep, URI) last fall, so that

might be why. However, my son has been on the amox. for a little over 2 weeks

now and there is NO improvement in his motor tics this time. After the last

round of abx in December (for URI... 10 day course), his motor tics came back

worse than ever before and I wonder if it's because the borrelia were pissed at

being attacked and came back even stronger afterward.

>

> I've read that when there is neuro involvement due to Lyme, IV antibiotics

are usually used. I'm a little leery of IV because of the risks, but I wonder if

we don't see improvement and need to go to IV, are we making it worse by trying

orals first?? I guess I just don't know if orals can ever be as effective as IV.

Does it just take longer, or is there no way orals can ever penetrate as well?

>

> Any advice would be appreciated!

>

>

>

>

>

>

> ------------------------------------------------------------------------------

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 9.0.791 / Virus Database: 271.1.1/2775 - Release Date: 03/28/10

02:32:00

>

>

>

[Guest guest]

Judy,

Did your son still have tics while on the tenex? Is that how you knew they were

improving with antibiotic treatment? I guess I thought tenex would have

suppressed most of the tics. I'm glad to hear you are seeing improvement. I've

heard from others who have also seen improvement in motor tics, so I am hopeful.

I agree that it will probably be a lot of trial and error to figure out what

works best. Thanks for sharing your story!

Beth

>

> Hi ,

> My 8 yr old son was diagnosed with lyme in October. He too has  motor and

vocal tics, as well as ocd symptoms.It took us a very long time to connect the

dots seeing he started with ocd symptoms at age 4 and tics at age 6. He was also

just diagnosed with pandas in January.

> My son has been on Zithromax and Rifampin for almost 6 months now, as well as

abilify and tenex for his tics and ocd symptoms. We are also adding Flagyl next

week after we come back from a trip. My son's tics have greatly improved after

being on the antibiotics for about 4 months. He too has more psychological

issues than physical with his lyme. (which are harder to treat) My LLMD said to

give him another year or so on the orals before we go to IV , although he did

mention that IVIG would help my son due ot the fact of the pandas.

> I think each case is so individual that unfortunately it's trial and error.

>  Just know you are not alone!!

> Hugs

> Judy

>

>

>

>

> ________________________________

> From: " mbnienaber@... " <mbnienaber@...>

>

> Sent: Sun, March 28, 2010 2:05:13 PM

> Subject: [ ] 5 year old with motor tics - anyone else? advice?

>

>  

> Hi all,

>

> This is my first post. My 5 year old son was just diagnosed with Lyme 2 weeks

ago. His primary issue is neurological. He developed a motor tic (mouth

stretching) approximately 6 months after the tick bites and has had several

others since then. Obviously, it has taken a long time to 'connect the dots' to

Lyme. I had never heard of Lyme causing motor and vocal tics. I know, even with

Lyme, this is a more unusual presentation. Does anyone else's child have

motor/vocal tics due to Lyme? If so, any suggestions for treatment?

>

> We have been to see an LLMD and he put my son on oral amoxicillin. I did

mention to the doc that we had seen an improvement in my son's motor tics toward

the end of abx treatment for other illnesses (strep, URI) last fall, so that

might be why. However, my son has been on the amox. for a little over 2 weeks

now and there is NO improvement in his motor tics this time. After the last

round of abx in December (for URI... 10 day course), his motor tics came back

worse than ever before and I wonder if it's because the borrelia were pissed at

being attacked and came back even stronger afterward.

>

> I've read that when there is neuro involvement due to Lyme, IV antibiotics are

usually used. I'm a little leery of IV because of the risks, but I wonder if we

don't see improvement and need to go to IV, are we making it worse by trying

orals first?? I guess I just don't know if orals can ever be as effective as IV.

Does it just take longer, or is there no way orals can ever penetrate as well?

>

> Any advice would be appreciated!

>

>

>

>

>

[Guest guest]

Hi Beth,

My son just turned 12 and was diagnosed with Lyme 5 years ago -- 3 months after

his tick bite and symptoms started. I know some people gradually get worse with

Lyme but he went downhill very quickly (maybe because of the Mycoplasma) so he

had multiple disturbing symptoms by the time we found the LLMD 3 months later.

The tics are the only symptoms that remain and very infrequent now. Everything

else went away relatively quickly after treatment and the tics improved

drastically right away also but would periodically come back with full force.

It wasn't until he was in treatment for a couple of years and he seemed healed

except he'd periodically have the tics and we thought maybe he'd just continue

to have them whenever he was fighting other infections that we tried stopping

treatment. After a couple of months he had a severe relapse and going back on

the previous meds didn't help. After about 6 months his LLMD mentioned the

possibility of retesting for Mycoplasma and that if he was positive it would

require different meds. It took a few months to find the right meds, and now

he's been on the zyth and rifampin and is back to where he was when we tried to

stop his meds the first time (i.e. very infrequently having a flareup of tics

that concern us). We've backed him off of some of his meds (at one time he was

also on minocycline with these) and we are considering trying to gradually back

off more but it's scary after our experience last time. I do think our journey

has been longer because even though we caught the Lyme relatively quickly, it

took us 3 1/2 years to figure out he also had the Mycoplasma. It's nice that we

are at a point where he almost never has noticeable tics and there are no other

concerns for us from the infection, but it would be nice to eventually be able

to stop the meds and have him continue to be well.

I hope this helps! Good luck with your son and please let me know how he is

doing.

Take care,

Patty

[ ] 5 year old with motor tics - anyone else?

advice?

>

>

>

> Hi all,

>

> This is my first post. My 5 year old son was just diagnosed with Lyme 2

weeks ago. His primary issue is neurological. He developed a motor tic (mouth

stretching) approximately 6 months after the tick bites and has had several

others since then. Obviously, it has taken a long time to 'connect the dots' to

Lyme. I had never heard of Lyme causing motor and vocal tics. I know, even with

Lyme, this is a more unusual presentation. Does anyone else's child have

motor/vocal tics due to Lyme? If so, any suggestions for treatment?

>

> We have been to see an LLMD and he put my son on oral amoxicillin. I did

mention to the doc that we had seen an improvement in my son's motor tics toward

the end of abx treatment for other illnesses (strep, URI) last fall, so that

might be why. However, my son has been on the amox. for a little over 2 weeks

now and there is NO improvement in his motor tics this time. After the last

round of abx in December (for URI... 10 day course), his motor tics came back

worse than ever before and I wonder if it's because the borrelia were pissed at

being attacked and came back even stronger afterward.

>

> I've read that when there is neuro involvement due to Lyme, IV antibiotics

are usually used. I'm a little leery of IV because of the risks, but I wonder if

we don't see improvement and need to go to IV, are we making it worse by trying

orals first?? I guess I just don't know if orals can ever be as effective as IV.

Does it just take longer, or is there no way orals can ever penetrate as well?

>

> Any advice would be appreciated!

>

>

>

>

>

>

> ----------------------------------------------------------

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 9.0.791 / Virus Database: 271.1.1/2775 - Release Date: 03/28/10

02:32:00

>

>

>

[Guest guest]

Hi Beth,

My son's tics are greatly diminished. Once in a while he'll have a burst of

blinking, or tongue thrusting, but lately, that's about it.We put him on the

tenex before we knew he had lyme. He was misdiagnosed with Tourettes. The tenex

helped the tics for about a week , than they came back full force. It wasn't

until after he was on antibiotics for a few months, they stopped.

Hugs

judy

________________________________

From: mom2_jt <mbnienaber@...>

Sent: Tue, March 30, 2010 8:37:08 PM

Subject: Re: [ ] 5 year old with motor tics - anyone else?

advice?

 

Judy,

Did your son still have tics while on the tenex? Is that how you knew they were

improving with antibiotic treatment? I guess I thought tenex would have

suppressed most of the tics. I'm glad to hear you are seeing improvement. I've

heard from others who have also seen improvement in motor tics, so I am hopeful.

I agree that it will probably be a lot of trial and error to figure out what

works best. Thanks for sharing your story!

Beth

>

> Hi ,

> My 8 yr old son was diagnosed with lyme in October. He too has  motor and

vocal tics, as well as ocd symptoms.It took us a very long time to connect the

dots seeing he started with ocd symptoms at age 4 and tics at age 6. He was also

just diagnosed with pandas in January.

> My son has been on Zithromax and Rifampin for almost 6 months now, as well as

abilify and tenex for his tics and ocd symptoms. We are also adding Flagyl next

week after we come back from a trip. My son's tics have greatly improved after

being on the antibiotics for about 4 months. He too has more psychological

issues than physical with his lyme. (which are harder to treat) My LLMD said to

give him another year or so on the orals before we go to IV , although he did

mention that IVIG would help my son due ot the fact of the pandas.

> I think each case is so individual that unfortunately it's trial and error.

>  Just know you are not alone!!

> Hugs

> Judy

>

>

>

>

> ____________ _________ _________ __

> From: " mbnienaber@ ... " <mbnienaber@ ...>

>

> Sent: Sun, March 28, 2010 2:05:13 PM

> Subject: [ ] 5 year old with motor tics - anyone else? advice?

>

>  

> Hi all,

>

> This is my first post. My 5 year old son was just diagnosed with Lyme 2 weeks

ago. His primary issue is neurological. He developed a motor tic (mouth

stretching) approximately 6 months after the tick bites and has had several

others since then. Obviously, it has taken a long time to 'connect the dots' to

Lyme. I had never heard of Lyme causing motor and vocal tics. I know, even with

Lyme, this is a more unusual presentation. Does anyone else's child have

motor/vocal tics due to Lyme? If so, any suggestions for treatment?

>

> We have been to see an LLMD and he put my son on oral amoxicillin. I did

mention to the doc that we had seen an improvement in my son's motor tics toward

the end of abx treatment for other illnesses (strep, URI) last fall, so that

might be why. However, my son has been on the amox. for a little over 2 weeks

now and there is NO improvement in his motor tics this time. After the last

round of abx in December (for URI... 10 day course), his motor tics came back

worse than ever before and I wonder if it's because the borrelia were pissed at

being attacked and came back even stronger afterward.

>

> I've read that when there is neuro involvement due to Lyme, IV antibiotics are

usually used. I'm a little leery of IV because of the risks, but I wonder if we

don't see improvement and need to go to IV, are we making it worse by trying

orals first?? I guess I just don't know if orals can ever be as effective as IV.

Does it just take longer, or is there no way orals can ever penetrate as well?

>

> Any advice would be appreciated!

>

>

>

>

>

[Guest guest]

Those of you with children who have neurological Lyme with psychiatric

presentations, besides the mycoplasma fermantens and the borrelia, be aware that

bartonella has also been associated with that type of symptom. And the

bartonella tests don't always show positive when it really is present.

I would urge you to stay with the treatment, don't be tempted to stop it too

soon, even though it gets tedious and you sometimes worry about giving children

so much treatment. Be glad you have access to a solution now, while they are

still young. Adult OCD and anxiety can be so horrible and can cripple their

lives if it gets severe.

I'm always sorry to see new families initiated into this awful disease, but at

least you do have reason for hope. Now there is much more knowledge than was

available even a few years ago. Of course, the knowledge is still so far from

widely available. Be aware, also, that once your children reach the age of 18,

they can refuse any meds, and so this is your window of opportunity now.

It is so wonderful to hear of kids making a recovery. I'm sure in the future

there will be more and more good news like this.

Best regards,

Carla

>

> Hi ,

> My 8 yr old son was diagnosed with lyme in October. He too has  motor and

vocal tics, as well as ocd symptoms.It took us a very long time to connect the

dots seeing he started with ocd symptoms at age 4 and tics at age 6. He was also

just diagnosed with pandas in January.

> My son has been on Zithromax and Rifampin for almost 6 months now, as well as

abilify and tenex for his tics and ocd symptoms. We are also adding Flagyl next

week after we come back from a trip. My son's tics have greatly improved after

being on the antibiotics for about 4 months. He too has more psychological

issues than physical with his lyme. (which are harder to treat) My LLMD said to

give him another year or so on the orals before we go to IV , although he did

mention that IVIG would help my son due ot the fact of the pandas.

> I think each case is so individual that unfortunately it's trial and error.

>  Just know you are not alone!!

> Hugs

> Judy