Re: To Pam with questions about Lyme/Fibro and treatment from the 11th

[Guest guest]

Pam...I've had a 5 week herx - as of today - from Doxy. Some days are worse

than others. I'm scheduled for 6 months of Doxy - 400 mg. per day. I've also

had lots of emotional upset / anxiety / over-sensitivity that I did not have

before beginning treatment. I actually feel like a basket case many days. I'm

trying to live one day at a time, with the hope (when I can feel it) that I will

one day feel well again. I haven't really felt well for over 3 years - when I

contracted Lyme - but I do know that I feel worse since starting treatment. I

think some of my lousy feelings (like crawling out of my skin) might be coming

from another med the doctor started me on when I began the Doxy; I've also been

taking Inderal (a beta-blocker) which has definitely helped my horrible

headaches, but could be responsible for my WEIRD feelings. I'm sticking with

the Doxy, but dropping the Inderal to see if I feel better emotionally. Good

luck...Tom

Questions about Lyme/Fibromyalgia and treatment

Question(s) is at bottom of this post.

I got my tick bite Sept 2003 - didn't know what it was - thought

spider bite - later saw pix and realized it was classic bullseye.

Started having symptoms about a month later and had to stop working

in Nov due to mental confusion, falling asleep ALL the time, etc.

Went through about a gazillion tests with no diagnosis.

In Feb started new symptoms of extreme pain and myoclonus, light

sensitivity, etc. Was diagnosed with fibromyalgia and sent to a new

doc. In May he said he suspected Lyme. Sent blood to Igenex ($180)

for western blot. Came back with multiple bands indicting Lyme.

Started on doxycyclin and just finished the 4th month.

I had herx reaction after the 1st couple of months then sort of

settled into what my doc has called a " prolonged herx " where

everything stays about the same level. He had me stop the doxy last

Thursday and gave me a prescription for flagyl (sp?) but said not to

start it for a couple of weeks - after I start feeling better.

Since I had continuing pain (FIBRO style with the tender points

etc.) he gave me 3 days worth of prednisone. During those 3 days,

almost all pain disappeared. I felt normal! (Except for sleeping 11

hours a day) Within a little over a day without the prednisone, the

pain came back worse than before.

The doc had seemed to think that once off the doxy, I'd quit having

the prolonged herx. He also indicated that - yes I do have

fibromyalgia and it is being caused by chronic Lyme - once I go

through a series of different antibiotics, the Lyme will go away and

the fibro will clear up. " I'll be good as new " .

From reading this board (and others, including fibro boards) this

may be overly optimistic. Or am I under-ly optimistic.

Questions (finally): if I don't get feeling better, should I just

go ahead and start the flagyl next week? Or should I call the doc

back?

Do most people who start treatment nine months after a bite get " all

better " ?

For those with fibro starting AFTER Lyme - once the Lyme is

" cured "

(controlled) does the fibro go away?

Questions and/or comments can be directed to the list owner at

-Owner

[Guest guest]

Pam

I didn't see your first post re: this but I have chronic lyme and there are

others on this site with chronic lyme. Some might be hesitant to talk about

being " cured " from lyme/FM after taking abx. I did oral/iv abx for 5yrs am

still looking for the " cure " I still test positive for lyme, still have

FM/CFS/etc. symptoms.

There was one lyme doc here who started treating lyme 4yrs ago. He started out

telling patients that after 6mo. of abx they would be over the lyme, then after

awhile he started telling them they would be over it in a yr, right before he

retired (he had lyme also and never got " cured " ) He was telling them they would

be over it in 2yrs.

There is not cut and dry answer with this disease.

Good Luck

julierb84 <julierb@...> wrote:

Hi Pam,

I admit I am very new here, this is only my second post. But I

didn't see anyone answer your questions, so I thought I'd try. From

all of my 2 months of research I believe you should stick with the

antibiotics. Also, it will take time and it may seem that it is a

lot worse before it is better, but I do believe that when treatment

is finished (if done properly) the fibromyalgia will be gone!!!

Hope this helps a little. Sorry it took me so long to answer also.

R. Bechthold

From: " Pam "

Subject: Questions about Lyme/Fibromyalgia and treatment

Question(s) is at bottom of this post.

I got my tick bite Sept 2003 - didn't know what it was - thought

spider bite – later saw pix and realized it was classic bullseye.

Started having symptoms about a month later and had to stop working

in Nov due to mental confusion, falling asleep ALL the time, etc.

Went through about a gazillion tests with no diagnosis.

In Feb started new symptoms of extreme pain and myoclonus, light

sensitivity, etc. Was diagnosed with fibromyalgia and sent to a new

doc. In May he said he suspected Lyme. Sent blood to Igenex ($180)

for western blot. Came back with multiple bands indicting Lyme.

Started on doxycyclin and just finished the 4th month.

I had herx reaction after the 1st couple of months then sort of

settled into what my doc has called a " prolonged herx " where

everything stays about the same level. He had me stop the doxy last

Thursday and gave me a prescription for flagyl (sp?) but said not to

start it for a couple of weeks – after I start feeling better.

Since I had continuing pain (FIBRO style with the tender points

etc.) he gave me 3 days worth of prednisone. During those 3 days,

almost all pain disappeared. I felt normal! (Except for sleeping 11

hours a day) Within a little over a day without the prednisone, the

pain came back worse than before.

The doc had seemed to think that once off the doxy, I'd quit having

the prolonged herx. He also indicated that – yes I do have

fibromyalgia and it is being caused by chronic Lyme – once I go

through a series of different antibiotics, the Lyme will go away and

the fibro will clear up. " I'll be good as new " .

From reading this board (and others, including fibro boards) this

may be overly optimistic. Or am I under-ly optimistic.

Questions (finally): if I don't get feeling better, should I just

go ahead and start the flagyl next week? Or should I call the doc

back?

Do most people who start treatment nine months after a bite get " all

better " ?

For those with fibro starting AFTER Lyme – once the Lyme is

" cured "

(controlled) does the fibro go away?

Questions and/or comments can be directed to the list owner at

-Owner

[Guest guest]

Thanks Tom.

I started teh Flagyl on Tues and haven't had any rxn yet other

than some diarrhea. I've posted also on a couple of fibro boards and

the general concensus is to not be disappointed if the fibro doesn't

go away after the Lyme is taken care of. I guess anything can

trigger fibro from a physical trauma, an infection, etc.

Pam

>

>

> Hi Pam,

> I admit I am very new here, this is only my second post. But I

> didn't see anyone answer your questions, so I thought I'd try.

From

> all of my 2 months of research I believe you should stick with the

> antibiotics. Also, it will take time and it may seem that it is a

> lot worse before it is better, but I do believe that when

treatment

> is finished (if done properly) the fibromyalgia will be gone!!!

>

> Hope this helps a little. Sorry it took me so long to answer

also.

>

> R. Bechthold

>

>

>

> From: " Pam " <woo_conley@H...>

> Subject: Questions about Lyme/Fibromyalgia and treatment

>

>

> Question(s) is at bottom of this post.

>

> I got my tick bite Sept 2003 - didn't know what it was - thought

> spider bite – later saw pix and realized it was classic bullseye.

> Started having symptoms about a month later and had to stop

working

> in Nov due to mental confusion, falling asleep ALL the time, etc.

> Went through about a gazillion tests with no diagnosis.

>

> In Feb started new symptoms of extreme pain and myoclonus, light

> sensitivity, etc. Was diagnosed with fibromyalgia and sent to a

new

> doc. In May he said he suspected Lyme. Sent blood to Igenex ($180)

> for western blot. Came back with multiple bands indicting Lyme.

> Started on doxycyclin and just finished the 4th month.

>

> I had herx reaction after the 1st couple of months then sort of

> settled into what my doc has called a " prolonged herx " where

> everything stays about the same level. He had me stop the doxy

last

> Thursday and gave me a prescription for flagyl (sp?) but said not

to

> start it for a couple of weeks – after I start feeling better.

>

> Since I had continuing pain (FIBRO style with the tender points

> etc.) he gave me 3 days worth of prednisone. During those 3 days,

> almost all pain disappeared. I felt normal! (Except for sleeping

11

> hours a day) Within a little over a day without the prednisone,

the

> pain came back worse than before.

>

> The doc had seemed to think that once off the doxy, I'd quit

having

> the prolonged herx. He also indicated that – yes I do have

> fibromyalgia and it is being caused by chronic Lyme – once I go

> through a series of different antibiotics, the Lyme will go away

and

> the fibro will clear up. " I'll be good as new " .

>

> From reading this board (and others, including fibro boards) this

> may be overly optimistic. Or am I under-ly optimistic.

>

> Questions (finally): if I don't get feeling better, should I just

> go ahead and start the flagyl next week? Or should I call the doc

> back?

>

> Do most people who start treatment nine months after a bite

get " all

> better " ?

>

> For those with fibro starting AFTER Lyme – once the Lyme is

> " cured "

> (controlled) does the fibro go away?

[Guest guest]

No cut and dried is right! I just have to hope that I can keep

getting disability until (when --- if) I can go back to work.

Unfortunately, my insurance doesn't have a built in plan for you to

work on a trial basis like SSDI. Once I go back, I lose the ability

to get disability from that company again. And I won't have to

opposrtunity to work for the same people again - they balready told

me that.

> Pam

> I didn't see your first post re: this but I have chronic lyme and

there are others on this site with chronic lyme. Some might be

hesitant to talk about being " cured " from lyme/FM after taking abx.

I did oral/iv abx for 5yrs am still looking for the " cure " I still

test positive for lyme, still have FM/CFS/etc. symptoms.

> There was one lyme doc here who started treating lyme 4yrs ago.

He started out telling patients that after 6mo. of abx they would be

over the lyme, then after awhile he started telling them they would

be over it in a yr, right before he retired (he had lyme also and

never got " cured " ) He was telling them they would be over it in

2yrs.

> There is not cut and dry answer with this disease.

> Good Luck

>