Re: Re: questions- no easy answers

[Guest guest]

Apparently a couple of things that are not traditional narcotics also can help

with pain: Seroquel (which may calm the moods too) and Gabapentin (Neurontin).

The pain is somehow a neurologic pain and the Lyme messes up the brain messages

so narcotics are not always effective with kids' pain.

I am willing to bet that the foot pain is in fact a herx from a coinfection.

Someone recommended lying in bed and writing the alphabet with your feet, and

that has sometimes helped my daughter to get up and moving in the morning --

gets the neurons jumping or something.

One word about the Western Blot -- look at the whole test, don't just take a

" negative " because some bands may be positive that demonstrate late stage Lyme,

where the body has stopped producing as many antibodies but the band are Lyme

specific and wouldn't show anything unless there were an infection.

Sorry you are going through this. It can be so hard.

Natasha

________________________________

From: endomr <ktdommer@...>

Sent: Tue, November 2, 2010 4:37:00 AM

Subject: [ ] Re: questions- no easy answers

Welcome to the group! Pain is an awful thing with Lyme. It seems the spirochetes

can hang out in any part of the body and cause pain. Throw in those coinfections

and pain is a reality of Lyme. My 15 year old son is getting relief from pain

now after a long year with undiagnosed Lyme. You are fortunate to know of the

tick bite. My son ended up taking a pain medication called tramadol. It helped

with the pain long enough for the antibiotics to work. He only takes in now

maybe twice a week. I have Lyme and experience painful feet usually only in the

morning or after I have been off of them. It does let up for me once I move

around. Everyone is different so keep that in mind. You will know your son best.

The teenager with Lyme is a tricky situation, especially one with anxiety.

It sounds like this week may be a turning point for you- getting labs and

starting a sound treatment based on symptoms and labs. Because he has had Lyme

running through his body for almost 3 years, you will want to be in the care of

an educated Lyme doctor. For me I chose an ILADS doctor and travel 5 hours to

see him. It is worth it. The doctor replied to my questions via email last night

at 1:10 AM. He is so good that way. He has Lyme himself and makes him

compassionate and creates a desire to stay up with the latest in Lyme treatment.

My son is on his 3rd week of IV antibiotics and I am actually thinking he will

be back in school at the semester break. Three months ago was agony for him. It

will get better- there is hope.

Everyone here will help you as much as they can.

Kari

>

> Hello. We are new to this group, and I hope some of you might be able to

> answer some questions that I have.

>

>

>

> My son Tim is 16 and was bitten by a deer tick 2 ½ years ago. 6 months

> later he began to complain of attention issues at school, and his grades

> dropped. He became increasingly anxious, and really went downhill about 6

> months ago. After 9 doctors and many prescriptions and diagnoses (ADHD,

> anxiety, depression, bipolar), we went to a new doctor who said he was

> positive it's Lyme. Tim had tested negative in the spring, so it never

> occurred to us that it could be Lyme. We are now waiting for results from

> IGenix .

>

>

>

> Given that the doctor was so adamant that he has Lyme, we started

> Doxycycline in mid-September. We also started him on Omega-3 supplements

> b/c his cholesterol levels were so low (107) and many other supplements

> including a pro-biotic.

>

>

>

> My primary question is about the extreme pain he is in. He says even the

> soles of his feet hurt, and it's painful to walk. This is much more than

> just the joint pain he started with, and so it seems that this is not a

> herx. His anxiety is still high and he is on a low dose SSRI. The doctor

> suspects that the SSRI might be what is causing him pain. Can anyone weigh

> in on this? Is that possible? He also recommended stopping the doxy until

> we get back the IGenix report, just to give his body a rest. Also, if the

> tests come back negative then I really have no idea what to do.

>

>

>

> Like all of you, I am scared and worried and frustrated. I appreciate any

> feedback you might have.

>

>

>

> Ellen

>

> Bethesda, MD

>

>

>

[Guest guest]

Thank you everyone for your helpful and kind feedback! I am relieved to

have people to ask!

Kari – regarding the pain med before the antibiotics worked… What time

frame did you need for the abx to work? Does this mean that the pain

increases at first and then starts to decline a bit?

How do I find an ILADS doctor?

Thank you all again!

Ellen

*From:* [mailto:

] *On Behalf Of *endomr

*Sent:* Tuesday, November 02, 2010 7:37 AM

*To:*

*Subject:* [ ] Re: questions- no easy answers

Welcome to the group! Pain is an awful thing with Lyme. It seems the

spirochetes can hang out in any part of the body and cause pain. Throw in

those coinfections and pain is a reality of Lyme. My 15 year old son is

getting relief from pain now after a long year with undiagnosed Lyme. You

are fortunate to know of the tick bite. My son ended up taking a pain

medication called tramadol. It helped with the pain long enough for the

antibiotics to work. He only takes in now maybe twice a week. I have Lyme

and experience painful feet usually only in the morning or after I have been

off of them. It does let up for me once I move around. Everyone is different

so keep that in mind. You will know your son best. The teenager with Lyme is

a tricky situation, especially one with anxiety.

It sounds like this week may be a turning point for you- getting labs and

starting a sound treatment based on symptoms and labs. Because he has had

Lyme running through his body for almost 3 years, you will want to be in the

care of an educated Lyme doctor. For me I chose an ILADS doctor and travel 5

hours to see him. It is worth it. The doctor replied to my questions via

email last night at 1:10 AM. He is so good that way. He has Lyme himself and

makes him compassionate and creates a desire to stay up with the latest in

Lyme treatment.

My son is on his 3rd week of IV antibiotics and I am actually thinking he

will be back in school at the semester break. Three months ago was agony for

him. It will get better- there is hope.

Everyone here will help you as much as they can.

Kari

>

> Hello. We are new to this group, and I hope some of you might be able to

> answer some questions that I have.

>

>

>

> My son Tim is 16 and was bitten by a deer tick 2 ½ years ago. 6 months

> later he began to complain of attention issues at school, and his grades

> dropped. He became increasingly anxious, and really went downhill about 6

> months ago. After 9 doctors and many prescriptions and diagnoses (ADHD,

> anxiety, depression, bipolar), we went to a new doctor who said he was

> positive it's Lyme. Tim had tested negative in the spring, so it never

> occurred to us that it could be Lyme. We are now waiting for results from

> IGenix .

>

>

>

> Given that the doctor was so adamant that he has Lyme, we started

> Doxycycline in mid-September. We also started him on Omega-3 supplements

> b/c his cholesterol levels were so low (107) and many other supplements

> including a pro-biotic.

>

>

>

> My primary question is about the extreme pain he is in. He says even the

> soles of his feet hurt, and it's painful to walk. This is much more than

> just the joint pain he started with, and so it seems that this is not a

> herx. His anxiety is still high and he is on a low dose SSRI. The doctor

> suspects that the SSRI might be what is causing him pain. Can anyone weigh

> in on this? Is that possible? He also recommended stopping the doxy until

> we get back the IGenix report, just to give his body a rest. Also, if the

> tests come back negative then I really have no idea what to do.

>

>

>

> Like all of you, I am scared and worried and frustrated. I appreciate any

> feedback you might have.

>

>

>

> Ellen

>

> Bethesda, MD

>

>

>

[Guest guest]

First of all, I'm sorry for you and your son. 

Next, I would recommend you look into Bartonella as a co-infection.  This can

cause the soles of your feet to hurt.  The anxiety can also be bartonella.  My

son was first diagnosed w/ this infection due to severe GI issues (pain) and

anxiety.  Bart seems to present this way more in children.  He is on an

antidepressant for his anxiety and it has never caused him pain.  I would also

reconsider stopping the antibiotics.  Sometimes you go way worse when you stop

and it's hard to climb back up.  Bartonella relapses usually occur 3-4 days

after stopping.  My son spiraled down in that short amount of time and it took

him several months plus the antidepressant to start feeling better.  These

diseases are so different for everyone so I recommend you make sure your doctor

has experience w/ these treatments.

Best wishes,

Elaine

________________________________

From: Ellen Kleinknecht <ellen@...>

Sent: Tue, November 2, 2010 6:30:58 PM

Subject: RE: [ ] Re: questions- no easy answers

Thank you everyone for your helpful and kind feedback!  I am relieved to

have people to ask!

Kari – regarding the pain med before the antibiotics worked…  What time

frame did you need for the abx to work?  Does this mean that the pain

increases at first and then starts to decline a bit?

How do I find an ILADS doctor?

Thank you all again!

Ellen

*From:* [mailto:

] *On Behalf Of *endomr

*Sent:* Tuesday, November 02, 2010 7:37 AM

*To:*

*Subject:* [ ] Re: questions- no easy answers

Welcome to the group! Pain is an awful thing with Lyme. It seems the

spirochetes can hang out in any part of the body and cause pain. Throw in

those coinfections and pain is a reality of Lyme. My 15 year old son is

getting relief from pain now after a long year with undiagnosed Lyme. You

are fortunate to know of the tick bite. My son ended up taking a pain

medication called tramadol. It helped with the pain long enough for the

antibiotics to work. He only takes in now maybe twice a week. I have Lyme

and experience painful feet usually only in the morning or after I have been

off of them. It does let up for me once I move around. Everyone is different

so keep that in mind. You will know your son best. The teenager with Lyme is

a tricky situation, especially one with anxiety.

It sounds like this week may be a turning point for you- getting labs and

starting a sound treatment based on symptoms and labs. Because he has had

Lyme running through his body for almost 3 years, you will want to be in the

care of an educated Lyme doctor. For me I chose an ILADS doctor and travel 5

hours to see him. It is worth it. The doctor replied to my questions via

email last night at 1:10 AM. He is so good that way. He has Lyme himself and

makes him compassionate and creates a desire to stay up with the latest in

Lyme treatment.

My son is on his 3rd week of IV antibiotics and I am actually thinking he

will be back in school at the semester break. Three months ago was agony for

him. It will get better- there is hope.

Everyone here will help you as much as they can.

Kari

>

> Hello. We are new to this group, and I hope some of you might be able to

> answer some questions that I have.

>

>

>

> My son Tim is 16 and was bitten by a deer tick 2 ½ years ago. 6 months

> later he began to complain of attention issues at school, and his grades

> dropped. He became increasingly anxious, and really went downhill about 6

> months ago. After 9 doctors and many prescriptions and diagnoses (ADHD,

> anxiety, depression, bipolar), we went to a new doctor who said he was

> positive it's Lyme. Tim had tested negative in the spring, so it never

> occurred to us that it could be Lyme. We are now waiting for results from

> IGenix .

>

>

>

> Given that the doctor was so adamant that he has Lyme, we started

> Doxycycline in mid-September. We also started him on Omega-3 supplements

> b/c his cholesterol levels were so low (107) and many other supplements

> including a pro-biotic.

>

>

>

> My primary question is about the extreme pain he is in. He says even the

> soles of his feet hurt, and it's painful to walk. This is much more than

> just the joint pain he started with, and so it seems that this is not a

> herx. His anxiety is still high and he is on a low dose SSRI. The doctor

> suspects that the SSRI might be what is causing him pain. Can anyone weigh

> in on this? Is that possible? He also recommended stopping the doxy until

> we get back the IGenix report, just to give his body a rest. Also, if the

> tests come back negative then I really have no idea what to do.

>

>

>

> Like all of you, I am scared and worried and frustrated. I appreciate any

> feedback you might have.

>

>

>

> Ellen

>

> Bethesda, MD

>

>

>

[Guest guest]

Hi. Dealing with your child having Lyme can be very hard and frightening. It's

such a difficult illness to deal with because it changes so much and is so

different for every person who has it. Unfortunately, My daughter and I never

experienced pain in the feet but maybe I can give some other feedback that might

help.

The most important thing for me to hold onto is that it will pass and now that

there is a correct diagnosis I know my child will get better and yours should

too. If you're with an experienced LLMD and he has had success treating Lyme,

trust him. Also remember that the bloodwork, even if it comes back negative

doesn't negate the clinical diagnosis.

Hang in there. It's gets better but yes often it gets worse first. The herx

reactions can be rough. We just try to remember that even if we feel worse it

means we're healing. That helps us.

All my best to you!

Annie

________________________________

From: <ecckwalk@...>

Sent: Wed, November 3, 2010 12:12:59 AM

Subject: Re: [ ] Re: questions- no easy answers

 

First of all, I'm sorry for you and your son. 

Next, I would recommend you look into Bartonella as a co-infection.  This can

cause the soles of your feet to hurt.  The anxiety can also be bartonella.  My

son was first diagnosed w/ this infection due to severe GI issues (pain) and

anxiety.  Bart seems to present this way more in children.  He is on an

antidepressant for his anxiety and it has never caused him pain.  I would also

reconsider stopping the antibiotics.  Sometimes you go way worse when you stop

and it's hard to climb back up.  Bartonella relapses usually occur 3-4 days

after stopping.  My son spiraled down in that short amount of time and it took

him several months plus the antidepressant to start feeling better.  These

diseases are so different for everyone so I recommend you make sure your doctor

has experience w/ these treatments.

Best wishes,

Elaine

________________________________

From: Ellen Kleinknecht <ellen@...>

Sent: Tue, November 2, 2010 6:30:58 PM

Subject: RE: [ ] Re: questions- no easy answers

Thank you everyone for your helpful and kind feedback!  I am relieved to

have people to ask!

Kari – regarding the pain med before the antibiotics worked…  What time

frame did you need for the abx to work?  Does this mean that the pain

increases at first and then starts to decline a bit?

How do I find an ILADS doctor?

Thank you all again!

Ellen

*From:* [mailto:

] *On Behalf Of *endomr

*Sent:* Tuesday, November 02, 2010 7:37 AM

*To:*

*Subject:* [ ] Re: questions- no easy answers

Welcome to the group! Pain is an awful thing with Lyme. It seems the

spirochetes can hang out in any part of the body and cause pain. Throw in

those coinfections and pain is a reality of Lyme. My 15 year old son is

getting relief from pain now after a long year with undiagnosed Lyme. You

are fortunate to know of the tick bite. My son ended up taking a pain

medication called tramadol. It helped with the pain long enough for the

antibiotics to work. He only takes in now maybe twice a week. I have Lyme

and experience painful feet usually only in the morning or after I have been

off of them. It does let up for me once I move around. Everyone is different

so keep that in mind. You will know your son best. The teenager with Lyme is

a tricky situation, especially one with anxiety.

It sounds like this week may be a turning point for you- getting labs and

starting a sound treatment based on symptoms and labs. Because he has had

Lyme running through his body for almost 3 years, you will want to be in the

care of an educated Lyme doctor. For me I chose an ILADS doctor and travel 5

hours to see him. It is worth it. The doctor replied to my questions via

email last night at 1:10 AM. He is so good that way. He has Lyme himself and

makes him compassionate and creates a desire to stay up with the latest in

Lyme treatment.

My son is on his 3rd week of IV antibiotics and I am actually thinking he

will be back in school at the semester break. Three months ago was agony for

him. It will get better- there is hope.

Everyone here will help you as much as they can.

Kari

>

> Hello. We are new to this group, and I hope some of you might be able to

> answer some questions that I have.

>

>

>

> My son Tim is 16 and was bitten by a deer tick 2 ½ years ago. 6 months

> later he began to complain of attention issues at school, and his grades

> dropped. He became increasingly anxious, and really went downhill about 6

> months ago. After 9 doctors and many prescriptions and diagnoses (ADHD,

> anxiety, depression, bipolar), we went to a new doctor who said he was

> positive it's Lyme. Tim had tested negative in the spring, so it never

> occurred to us that it could be Lyme. We are now waiting for results from

> IGenix .

>

>

>

> Given that the doctor was so adamant that he has Lyme, we started

> Doxycycline in mid-September. We also started him on Omega-3 supplements

> b/c his cholesterol levels were so low (107) and many other supplements

> including a pro-biotic.

>

>

>

> My primary question is about the extreme pain he is in. He says even the

> soles of his feet hurt, and it's painful to walk. This is much more than

> just the joint pain he started with, and so it seems that this is not a

> herx. His anxiety is still high and he is on a low dose SSRI. The doctor

> suspects that the SSRI might be what is causing him pain. Can anyone weigh

> in on this? Is that possible? He also recommended stopping the doxy until

> we get back the IGenix report, just to give his body a rest. Also, if the

> tests come back negative then I really have no idea what to do.

>

>

>

> Like all of you, I am scared and worried and frustrated. I appreciate any

> feedback you might have.

>

>

>

> Ellen

>

> Bethesda, MD

>

>

>

[Guest guest]

Another set of medications used to treat Lyme pain is the SNRIs

(selective serotonin/norepinephrine reuptake inhibitors) such as Cymbalta.

If he has any anxiety, that can get into an escalation cycle with the

pain. You may end up needing to treat both to get traction on either.

On 11/2/2010 8:11 AM, Natasha Moiseyev wrote:

>

> Apparently a couple of things that are not traditional narcotics also

> can help

> with pain: Seroquel (which may calm the moods too) and Gabapentin

> (Neurontin).

> The pain is somehow a neurologic pain and the Lyme messes up the brain

> messages

> so narcotics are not always effective with kids' pain.

>

> I am willing to bet that the foot pain is in fact a herx from a

> coinfection.

>

> Someone recommended lying in bed and writing the alphabet with your

> feet, and

> that has sometimes helped my daughter to get up and moving in the

> morning --

> gets the neurons jumping or something.

>

> One word about the Western Blot -- look at the whole test, don't just

> take a

> " negative " because some bands may be positive that demonstrate late

> stage Lyme,

> where the body has stopped producing as many antibodies but the band

> are Lyme

> specific and wouldn't show anything unless there were an infection.

>

> Sorry you are going through this. It can be so hard.

>

> Natasha

>

> ________________________________

> From: endomr <ktdommer@... <mailto:ktdommer%40>>

>

> <mailto: %40>

> Sent: Tue, November 2, 2010 4:37:00 AM

> Subject: [ ] Re: questions- no easy answers

>

> Welcome to the group! Pain is an awful thing with Lyme. It seems the

> spirochetes

> can hang out in any part of the body and cause pain. Throw in those

> coinfections

> and pain is a reality of Lyme. My 15 year old son is getting relief

> from pain

> now after a long year with undiagnosed Lyme. You are fortunate to know

> of the

> tick bite. My son ended up taking a pain medication called tramadol.

> It helped

> with the pain long enough for the antibiotics to work. He only takes

> in now

> maybe twice a week. I have Lyme and experience painful feet usually

> only in the

> morning or after I have been off of them. It does let up for me once I

> move

> around. Everyone is different so keep that in mind. You will know your

> son best.

> The teenager with Lyme is a tricky situation, especially one with anxiety.

> It sounds like this week may be a turning point for you- getting labs and

> starting a sound treatment based on symptoms and labs. Because he has

> had Lyme

> running through his body for almost 3 years, you will want to be in

> the care of

> an educated Lyme doctor. For me I chose an ILADS doctor and travel 5

> hours to

> see him. It is worth it. The doctor replied to my questions via email

> last night

> at 1:10 AM. He is so good that way. He has Lyme himself and makes him

> compassionate and creates a desire to stay up with the latest in Lyme

> treatment.

> My son is on his 3rd week of IV antibiotics and I am actually thinking

> he will

> be back in school at the semester break. Three months ago was agony

> for him. It

> will get better- there is hope.

> Everyone here will help you as much as they can.

> Kari

>

>

> >

> > Hello. We are new to this group, and I hope some of you might be able to

> > answer some questions that I have.

> >

> >

> >

> > My son Tim is 16 and was bitten by a deer tick 2 ½ years ago. 6 months

> > later he began to complain of attention issues at school, and his grades

> > dropped. He became increasingly anxious, and really went downhill

> about 6

> > months ago. After 9 doctors and many prescriptions and diagnoses (ADHD,

> > anxiety, depression, bipolar), we went to a new doctor who said he was

> > positive it's Lyme. Tim had tested negative in the spring, so it never

> > occurred to us that it could be Lyme. We are now waiting for results

> from

> > IGenix .

> >

> >

> >

> > Given that the doctor was so adamant that he has Lyme, we started

> > Doxycycline in mid-September. We also started him on Omega-3 supplements

> > b/c his cholesterol levels were so low (107) and many other supplements

> > including a pro-biotic.

> >

> >

> >

> > My primary question is about the extreme pain he is in. He says even the

> > soles of his feet hurt, and it's painful to walk. This is much more than

> > just the joint pain he started with, and so it seems that this is not a

> > herx. His anxiety is still high and he is on a low dose SSRI. The doctor

> > suspects that the SSRI might be what is causing him pain. Can anyone

> weigh

> > in on this? Is that possible? He also recommended stopping the doxy

> until

> > we get back the IGenix report, just to give his body a rest. Also,

> if the

> > tests come back negative then I really have no idea what to do.

> >

> >

> >

> > Like all of you, I am scared and worried and frustrated. I

> appreciate any

> > feedback you might have.

> >

> >

> >

> > Ellen

> >

> > Bethesda, MD

>

>

>

[Guest guest]

Would Cymbalta replace the current SSRI he is on (Celexa)? I have heard

that it is wonderful for people who can take it. He couldn’t take Zoloft or

lexapro, but hasn’t had trouble with the Celexa. Hasn’t had much success

either! I will ask about the cymbalta – thank you, thank you to you all for

your kind and helpful responses!

*From:* [mailto:

] *On Behalf Of *

*Sent:* Wednesday, November 03, 2010 12:57 PM

*To:*

*Subject:* Re: [ ] Re: questions- no easy answers

Another set of medications used to treat Lyme pain is the SNRIs

(selective serotonin/norepinephrine reuptake inhibitors) such as Cymbalta.

If he has any anxiety, that can get into an escalation cycle with the

pain. You may end up needing to treat both to get traction on either.

On 11/2/2010 8:11 AM, Natasha Moiseyev wrote:

>

> Apparently a couple of things that are not traditional narcotics also

> can help

> with pain: Seroquel (which may calm the moods too) and Gabapentin

> (Neurontin).

> The pain is somehow a neurologic pain and the Lyme messes up the brain

> messages

> so narcotics are not always effective with kids' pain.

>

> I am willing to bet that the foot pain is in fact a herx from a

> coinfection.

>

> Someone recommended lying in bed and writing the alphabet with your

> feet, and

> that has sometimes helped my daughter to get up and moving in the

> morning --

> gets the neurons jumping or something.

>

> One word about the Western Blot -- look at the whole test, don't just

> take a

> " negative " because some bands may be positive that demonstrate late

> stage Lyme,

> where the body has stopped producing as many antibodies but the band

> are Lyme

> specific and wouldn't show anything unless there were an infection.

>

> Sorry you are going through this. It can be so hard.

>

> Natasha

>

> ________________________________

> From: endomr <ktdommer@... <ktdommer%40> <mailto:

ktdommer%40 <ktdommer%2540>>>

> < %40>

>

<mailto: %40< %2540>

>

> Sent: Tue, November 2, 2010 4:37:00 AM

> Subject: [ ] Re: questions- no easy answers

>

> Welcome to the group! Pain is an awful thing with Lyme. It seems the

> spirochetes

> can hang out in any part of the body and cause pain. Throw in those

> coinfections

> and pain is a reality of Lyme. My 15 year old son is getting relief

> from pain

> now after a long year with undiagnosed Lyme. You are fortunate to know

> of the

> tick bite. My son ended up taking a pain medication called tramadol.

> It helped

> with the pain long enough for the antibiotics to work. He only takes

> in now

> maybe twice a week. I have Lyme and experience painful feet usually

> only in the

> morning or after I have been off of them. It does let up for me once I

> move

> around. Everyone is different so keep that in mind. You will know your

> son best.

> The teenager with Lyme is a tricky situation, especially one with anxiety.

> It sounds like this week may be a turning point for you- getting labs and

> starting a sound treatment based on symptoms and labs. Because he has

> had Lyme

> running through his body for almost 3 years, you will want to be in

> the care of

> an educated Lyme doctor. For me I chose an ILADS doctor and travel 5

> hours to

> see him. It is worth it. The doctor replied to my questions via email

> last night

> at 1:10 AM. He is so good that way. He has Lyme himself and makes him

> compassionate and creates a desire to stay up with the latest in Lyme

> treatment.

> My son is on his 3rd week of IV antibiotics and I am actually thinking

> he will

> be back in school at the semester break. Three months ago was agony

> for him. It

> will get better- there is hope.

> Everyone here will help you as much as they can.

> Kari

>

>

> >

> > Hello. We are new to this group, and I hope some of you might be able to

> > answer some questions that I have.

> >

> >

> >

> > My son Tim is 16 and was bitten by a deer tick 2 ½ years ago. 6 months

> > later he began to complain of attention issues at school, and his grades

> > dropped. He became increasingly anxious, and really went downhill

> about 6

> > months ago. After 9 doctors and many prescriptions and diagnoses (ADHD,

> > anxiety, depression, bipolar), we went to a new doctor who said he was

> > positive it's Lyme. Tim had tested negative in the spring, so it never

> > occurred to us that it could be Lyme. We are now waiting for results

> from

> > IGenix .

> >

> >

> >

> > Given that the doctor was so adamant that he has Lyme, we started

> > Doxycycline in mid-September. We also started him on Omega-3 supplements

> > b/c his cholesterol levels were so low (107) and many other supplements

> > including a pro-biotic.

> >

> >

> >

> > My primary question is about the extreme pain he is in. He says even the

> > soles of his feet hurt, and it's painful to walk. This is much more than

> > just the joint pain he started with, and so it seems that this is not a

> > herx. His anxiety is still high and he is on a low dose SSRI. The doctor

> > suspects that the SSRI might be what is causing him pain. Can anyone

> weigh

> > in on this? Is that possible? He also recommended stopping the doxy

> until

> > we get back the IGenix report, just to give his body a rest. Also,

> if the

> > tests come back negative then I really have no idea what to do.

> >

> >

> >

> > Like all of you, I am scared and worried and frustrated. I

> appreciate any

> > feedback you might have.

> >

> >

> >

> > Ellen

> >

> > Bethesda, MD

>

>

>

[Guest guest]

That was our experience but everyone seems to need a different mix of meds.

-

On Nov 3, 2010, at 1:20 PM, Ellen Kleinknecht <ellen@...> wrote:

> Would Cymbalta replace the current SSRI he is on (Celexa)? I have heard

> that it is wonderful for people who can take it. He couldn’t take Zoloft or

> lexapro, but hasn’t had trouble with the Celexa. Hasn’t had much success

> either! I will ask about the cymbalta – thank you, thank you to you all for

> your kind and helpful responses!

>

>

>

> *From:* [mailto:

> ] *On Behalf Of *

> *Sent:* Wednesday, November 03, 2010 12:57 PM

> *To:*

> *Subject:* Re: [ ] Re: questions- no easy answers

>

>

>

>

>

> Another set of medications used to treat Lyme pain is the SNRIs

> (selective serotonin/norepinephrine reuptake inhibitors) such as Cymbalta.

>

> If he has any anxiety, that can get into an escalation cycle with the

> pain. You may end up needing to treat both to get traction on either.

>

>

>

> On 11/2/2010 8:11 AM, Natasha Moiseyev wrote:

>>

>> Apparently a couple of things that are not traditional narcotics also

>> can help

>> with pain: Seroquel (which may calm the moods too) and Gabapentin

>> (Neurontin).

>> The pain is somehow a neurologic pain and the Lyme messes up the brain

>> messages

>> so narcotics are not always effective with kids' pain.

>>

>> I am willing to bet that the foot pain is in fact a herx from a