Re: What symptoms do you get for a herx?

[Guest guest]

Herx for me depends on the meds and or combo of meds. Most abx seem

to take 3 weeks for the herx to start. However twice I have had bad

herx on 2nd day of Cipro/Doxy combo. First two weeks of Zithro feel

great, then herx hits and can't hardly walk, barely can bend knees,

have severe neuropenia. Bactrim caused me to have heart symptom

herxes. My worse herx cycle was first month on doxy/flagyl and 2nd

worse was the first month on doxy/cipro/flagyl where I herxed the

whole dang month.

With all the diff abx I have taken the herx symptoms they all cause

is extreme pain in extremities, muscle aches, fatigue, dizziness,

runny nose, a pseudo sinus infection the 2nd week, grumpy/moodiness,

easily startled, easily angered, foot pain, itching and absense

seizures. I have also had " old rashes " reappear briefly when

starting a new abx. I have no idea " why " this happens, but is weird

to have RMSF & Ehr rashes reappear in same location as they appeared

when I first contracted the infections. Most Lymie women will have

the worst part of herx cycle happen same time as their period.

>

> What symptoms to people experience with a herx? More pain? Fatigue?

> How many weeks of therapy until you herxed? When did you see some

> improvement in symptoms?

>

> Pls. share.

>

> thanks,

>

>

[Guest guest]

Thanks and for Posts.

I have added 300Doxie to my mix, finished fourth day. The Zithromax at 600mg

has all my joints aching now the doxie seems to be causing what I might call

head symptoms. I have anxiety and headaches anyway. But it seems to be causing

what I might describe as things breaking up in my head. Probably the bugs

getting chased out. I have to drive 45 miles today to pick up Rx's. I intend

to be real careful as I have to go for my refills.

I wish I did not know so much about what the symptoms of Lyme are because The

more you know the more you know how sick you are. Sometimes Ignorance is bliss.

I have been having trouble with my ear for years. I was looking at a Ear,

nose, throat Dr record from '95 before my diagnoses and I had written out this

three page letter of my symptoms.

They were all of course Lyme. But he was skeptical and made that known in his

Dr notes. At that time I don't think I had even heard of Lyme or I just knew

nothing about it. This was the paralysis, headaches, pain on and on. Ear ache,

down into my throat. It still aches as I was in the ER a month ago and he asked

me how long and why had I been able to go so long. Neglect? I don't know.

The worse the herx the more bugs you have that is for sure. You will herx so

bad you will be wondering is it worth it. It is.

But if you don't treat it and you have it bad you will regret it.

I always get my medical records. Sometimes I wonder If that is a good Idea or

not.

I can say ditto on all below.

Millie

csalfi@... wrote:

For me its headaches (my symptoms seem to be from the neck up) and increased

anxiety. When on Ketek, I got tremendous ear aches I'm not sure if that was a

herx or a reaction to the meds.

[Guest guest]

thanks. I had a neck ache (ame one that comes and goes or is there

most of the time) and chills without fever. I also had a bad headache.

You know-those were the same symptoms that I had when I had lyme 6

yrs ago. I remember being in bed all week til the doxy kicked in.

In , csalfi@c... wrote:

>

>

> For me its headaches (my symptoms seem to be from the neck up) and

increased anxiety. When on Ketek, I got tremendous ear aches I'm not

sure if that was a herx or a reaction to the meds.

>

>

> -------------- Original message ----------------------

> From: " wtptoo " <wtptoo@y...>

> > Herx for me depends on the meds and or combo of meds. Most abx

seem

> > to take 3 weeks for the herx to start. However twice I have had

bad

> > herx on 2nd day of Cipro/Doxy combo. First two weeks of Zithro

feel

> > great, then herx hits and can't hardly walk, barely can bend

knees,

> > have severe neuropenia. Bactrim caused me to have heart symptom

> > herxes. My worse herx cycle was first month on doxy/flagyl and

2nd

> > worse was the first month on doxy/cipro/flagyl where I herxed the

> > whole dang month.

> >

> > With all the diff abx I have taken the herx symptoms they all

cause

> > is extreme pain in extremities, muscle aches, fatigue, dizziness,

> > runny nose, a pseudo sinus infection the 2nd week,

grumpy/moodiness,

> > easily startled, easily angered, foot pain, itching and absense

> > seizures. I have also had " old rashes " reappear briefly when

> > starting a new abx. I have no idea " why " this happens, but is

weird

> > to have RMSF & Ehr rashes reappear in same location as they

appeared

> > when I first contracted the infections. Most Lymie women will

have

> > the worst part of herx cycle happen same time as their period.

> >

> >

> >

> >

> > >

> > > What symptoms to people experience with a herx? More pain?

Fatigue?

> > > How many weeks of therapy until you herxed? When did you see

some

> > > improvement in symptoms?

> > >

> > > Pls. share.

> > >

> > > thanks,

> > >

> > >

> >

> >

> >

> >

> >

> >

> >

> > For up to date information about Lyme disease and the known co-

infections

> > delivered to your email address see:

> > Robynns_Lyme_List/

> >

> >

[Guest guest]

,

Herxes are different for everybody and they depend on the symptoms you

have. How quickly they start depends on what you're taking. And how

long the last also depends on what you're taking, how sick you are,

and what your symptoms are!

Having said that, my experience is this: My first abx was 100 mg doxy,

4 times a day. I Herxed about 4-5 days after starting it. My hips,

thighs, and arms ached. I was terribly depressed. And I had horrible

brain fog -- couldn't concentrate, couldn't drive, couldn't read.

Since then, my Herxes have usually been some combination of the

symptoms of the first Herx, with the addition of extreme fatigue or

tiredness (I make a distinction between fatigue and tiredness) and a

sore throat sometimes. I've Herxed as quickly as 24 hours after taking

a different abx and as long as weeks into taking Buhner's protocol.

My Herxes usually last 3 days or less and stop abruptly. I feel very

tired the day after ( " Herx hangover " I call it) and need extra sleep,

then feel very good for a day or two before going back to being at

least mildly tired all the time.

In mid-December I developed a sore throat and was tired and achy for

over 2 weeks. It could have been a Herx. It could have been a Lyme

flare-up. My LLMD called it a flare-up.

Today I started to Herx again. I started 500 mg Flagyl, twice a day, 4

days on, 3 days off. I started last Sunday, stopped on Wednesday, and

now it's two days later and I'm Herxing. Prior to this I thought

Flagyl didn't work well for me - LOL! I'm also taking 200 mg Diflucan

daily.

I'm going to take Flagyl for a total of 4 weeks, then stop and switch

to Ketek. Some of you may recall that I'm into " pulsing " my treatments

to try to fake out the spiroketes. Good thing I have generous sick-

leave time. My history is that I Herx whenever I change treatments,

including going back on an abx I've been on before.

Jessie

>

> What symptoms to people experience with a herx? More pain? Fatigue?

> How many weeks of therapy until you herxed? When did you see some

> improvement in symptoms?

>

> Pls. share.

>

> thanks,

>

>

[Guest guest]

Jessie,

Your herxing experiences sounds a lot like what I have been going

through. It also reminded me the first two months on Doxy I would

alternate between bad knee pain or hip pain. When you started Doxy

did you notice any sort of skin symptoms, not allergic rashes, but

like forcing the spirochetes out through the skin? That's at least

how the LLMD explained it to me.

Did you notice extreme sleepiness mid-day the first few months of

treatment? Or do you always feel fatigued? My LLMD had said to take

a nap at noon time because I would feel sleepy during treatment. I

was thinking " yeah right, they're not going to allow me to nap at

work " . But it was almost like narcolepsy where I fought to keep

myself awake at my desk always been 11am-1pm every day. So I started

eating lunch while I worked and napped on my breaks and lunches.

Thank goodness there is a couch in the lunchroom! Now I notice I

don't get the sleepiness every day at noon just on the days of

either 3rd or 4th week at height of herx. Does that sound anything

like what you have experienced?

>

> ,

>

> Herxes are different for everybody and they depend on the symptoms

you

> have. How quickly they start depends on what you're taking. And

how

> long the last also depends on what you're taking, how sick you

are,

> and what your symptoms are!

>

> Having said that, my experience is this: My first abx was 100 mg

doxy,

> 4 times a day. I Herxed about 4-5 days after starting it. My hips,

> thighs, and arms ached. I was terribly depressed. And I had

horrible

> brain fog -- couldn't concentrate, couldn't drive, couldn't read.

>

> Since then, my Herxes have usually been some combination of the

> symptoms of the first Herx, with the addition of extreme fatigue

or

> tiredness (I make a distinction between fatigue and tiredness) and

a

> sore throat sometimes. I've Herxed as quickly as 24 hours after

taking

> a different abx and as long as weeks into taking Buhner's

protocol.

>

> My Herxes usually last 3 days or less and stop abruptly. I feel

very

> tired the day after ( " Herx hangover " I call it) and need extra

sleep,

> then feel very good for a day or two before going back to being at

> least mildly tired all the time.

>

[Guest guest]

Have you checked for co-infections? Babesia and Ehrlichia are known to

cause chills and fever. -

>

> thanks. I had a neck ache (ame one that comes and goes or is there

> most of the time) and chills without fever. I also had a bad headache.

>

> You know-those were the same symptoms that I had when I had lyme 6

> yrs ago. I remember being in bed all week til the doxy kicked in.

>

[Guest guest]

so confusing. I have pain and body aches every day. I am always

fatigued. I have been like this for 4 yrs, worse in last 2, and even

worse last 4-6 months. Yesterday, I hurt from head to toe with aches

and extreme neck ache and headache with chills, no fever. I have had

this before..who knows.

I hope we all get better.

In , " Jessie MacMillan "

<jessiemacmillan@y...> wrote:

>

> ,

>

> Herxes are different for everybody and they depend on the symptoms

you

> have. How quickly they start depends on what you're taking. And

how

> long the last also depends on what you're taking, how sick you

are,

> and what your symptoms are!

>

> Having said that, my experience is this: My first abx was 100 mg

doxy,

> 4 times a day. I Herxed about 4-5 days after starting it. My hips,

> thighs, and arms ached. I was terribly depressed. And I had

horrible

> brain fog -- couldn't concentrate, couldn't drive, couldn't read.

>

> Since then, my Herxes have usually been some combination of the

> symptoms of the first Herx, with the addition of extreme fatigue

or

> tiredness (I make a distinction between fatigue and tiredness) and

a

> sore throat sometimes. I've Herxed as quickly as 24 hours after

taking

> a different abx and as long as weeks into taking Buhner's

protocol.

>

> My Herxes usually last 3 days or less and stop abruptly. I feel

very

> tired the day after ( " Herx hangover " I call it) and need extra

sleep,

> then feel very good for a day or two before going back to being at

> least mildly tired all the time.

>

> In mid-December I developed a sore throat and was tired and achy

for

> over 2 weeks. It could have been a Herx. It could have been a Lyme

> flare-up. My LLMD called it a flare-up.

>

> Today I started to Herx again. I started 500 mg Flagyl, twice a

day, 4

> days on, 3 days off. I started last Sunday, stopped on Wednesday,

and

> now it's two days later and I'm Herxing. Prior to this I thought

> Flagyl didn't work well for me - LOL! I'm also taking 200 mg

Diflucan

> daily.

>

> I'm going to take Flagyl for a total of 4 weeks, then stop and

switch

> to Ketek. Some of you may recall that I'm into " pulsing " my

treatments

> to try to fake out the spiroketes. Good thing I have generous sick-

> leave time. My history is that I Herx whenever I change

treatments,

> including going back on an abx I've been on before.

>

> Jessie

>

> >

> > What symptoms to people experience with a herx? More pain?

Fatigue?

> > How many weeks of therapy until you herxed? When did you see

some

> > improvement in symptoms?

> >

> > Pls. share.

> >

> > thanks,

> >

> >

>

[Guest guest]

checked Ehrlichia years ago with quest. I did tell this dr. that I

have chills and nightsweats on and off. I guess he just wanted to

start tx right away. I will have to see at my next appt. I skipped out

on them at Ingenex due to the price. The Western blot was IND and he

is still treating me.

In , " wtptoo " <wtptoo@y...> wrote:

>

> Have you checked for co-infections? Babesia and Ehrlichia are known

to

> cause chills and fever. -

>

>

> >

> > thanks. I had a neck ache (ame one that comes and goes or is there

> > most of the time) and chills without fever. I also had a bad

headache.

> >

> > You know-those were the same symptoms that I had when I had lyme 6

> > yrs ago. I remember being in bed all week til the doxy kicked in.

> >

>

[Guest guest]

Definitely understand the $$ issue. But Quest is notorious for

inaccurate testing especially on Lyme and co-infections. My dr doesn't

trust even a liver profile to be done at Quest. I know of a few horror

stories related to that lab. I think Bowen would be more cost

efficient...I was able to get RiBb, Babs WA-1 & HME, HGI from Bowen for

total of $295.

Everyone is different of course, but my new dr said in addition to

suspecting the Babs & Ehr for night sweats, fevers, etc he just run

blood & urine tests and chest X-ray to rule out whether I could also

have tuberculosus, Hanta Virus or some other infection which now I

can't remember. Course those diseases are common in the southwest

region, but there might be some infection in your area that could be

adding to the Lyme problem. A lot of these infections are opportunistic

and won't infect someone unless their immune system is already bogged

down.

I would definitely reinterate to your dr every time you speak to him

you are having fever and chills if this is an on-going problem. It may

eventually make the lightbulb come on in his brain. It has taken me

years to learn to speak up to my doctors and tell them every time I'm

in severe pain, I have nightly sweats & fevers, etc. I think I was too

mousy before to drs and now I realize you have to let them know it

continues to be a problem till they can think of what possibilities it

could be.

Hope you are feeling well again soon.

>

> checked Ehrlichia years ago with quest. I did tell this dr. that I

> have chills and nightsweats on and off. I guess he just wanted to

> start tx right away. I will have to see at my next appt. I skipped

out

> on them at Ingenex due to the price. The Western blot was IND and he

> is still treating me.

>

>

[Guest guest]

I really do speak up. I think drs. dislike because I probe the **

out of them. I will see him again soon. It was all very quick at the

first visit. He did know about the fever and chills cause he said I

may get more than I am used to. I really get chills and night

sweats. I don't usually have a fever??

Right now my neck aching is back. Lyme?? Who knows. I am still

trying to digest that a dr. actually is treating me for lyme.

In , " wtptoo " <wtptoo@y...> wrote:

>

> Definitely understand the $$ issue. But Quest is notorious for

> inaccurate testing especially on Lyme and co-infections. My dr

doesn't

> trust even a liver profile to be done at Quest. I know of a few

horror

> stories related to that lab. I think Bowen would be more cost

> efficient...I was able to get RiBb, Babs WA-1 & HME, HGI from

Bowen for

> total of $295.

>

> Everyone is different of course, but my new dr said in addition to

> suspecting the Babs & Ehr for night sweats, fevers, etc he just

run

> blood & urine tests and chest X-ray to rule out whether I could

also

> have tuberculosus, Hanta Virus or some other infection which now I

> can't remember. Course those diseases are common in the southwest

> region, but there might be some infection in your area that could

be

> adding to the Lyme problem. A lot of these infections are

opportunistic

> and won't infect someone unless their immune system is already

bogged

> down.

>

> I would definitely reinterate to your dr every time you speak to

him

> you are having fever and chills if this is an on-going problem. It

may

> eventually make the lightbulb come on in his brain. It has taken

me

> years to learn to speak up to my doctors and tell them every time

I'm

> in severe pain, I have nightly sweats & fevers, etc. I think I was

too

> mousy before to drs and now I realize you have to let them know it

> continues to be a problem till they can think of what

possibilities it

> could be.

>

> Hope you are feeling well again soon.

>

>

>

> >

> > checked Ehrlichia years ago with quest. I did tell this dr. that

I

> > have chills and nightsweats on and off. I guess he just wanted

to

> > start tx right away. I will have to see at my next appt. I

skipped

> out

> > on them at Ingenex due to the price. The Western blot was IND

and he

> > is still treating me.

> >

> >

>

[Guest guest]

,

Sorry I got your symptoms confused then reread earlier post and

realized you didn't mention fever. I just started on morphine for

the first time so my brain may be a little screwy at the moment.

I know what you mean about probing drs. I felt sorry yesterday for

my dr because I kept him so long. But he was nice and asked me if he

had covered everything on my list. LOL He is kind though and I am

in shock too because he doesn't seem to think I am crazy. He is

actually testing me for a bunch of stuff and believes I am in pain

so gave me new pain meds and sending me to phys. therapy.

>

> I really do speak up. I think drs. dislike because I probe the **

> out of them. I will see him again soon. It was all very quick at

the

> first visit. He did know about the fever and chills cause he said

I

> may get more than I am used to. I really get chills and night

> sweats. I don't usually have a fever??

>

> Right now my neck aching is back. Lyme?? Who knows. I am still

> trying to digest that a dr. actually is treating me for lyme.

>

[Guest guest]

WHEN ON KETEK,

Can you please tell me if you had any problems with diarrhea, soft

stolls while taking Ketek. I have been (13 days) on Ketek 400mg 2xday

plus 500mg Amox 3xday and I have very soft, mushy, not formed

stools. I havn't started herxing yet. Thank you for your reply. Sorry

I don't seem to be able to figure out your name. -- Lida

> > >

> > > What symptoms to people experience with a herx? More pain?

Fatigue?

> > > How many weeks of therapy until you herxed? When did you see

some

> > > improvement in symptoms?

> > >

> > > Pls. share.

> > >

> > > thanks,

> > >

> > >

> >

> >

> >

> >

> >

> >

> >

> > For up to date information about Lyme disease and the known co-

infections

> > delivered to your email address see:

> > Robynns_Lyme_List/

> >

> >

[Guest guest]

I find it best to make a written list of my symptoms and prioritize

them. I then give this list to my doctor so that my doctor can have

a complete picture. I ask my doctor to go through each one of them

with me. It usually taked my doctor less then 5 minutes to give her

opinion on each of the symptoms. It also helps the doctor track my

progress from one visit to the next.

We must all be our own advocates with our doctors and the health

care system!

Be well,

> >

> > checked Ehrlichia years ago with quest. I did tell this dr. that

I

> > have chills and nightsweats on and off. I guess he just wanted

to

> > start tx right away. I will have to see at my next appt. I

skipped

> out

> > on them at Ingenex due to the price. The Western blot was IND

and he

> > is still treating me.

> >

> >

>

[Guest guest]

Millie,

A valuable lesson that my LLMD taught me is that once we have done

our due dilligence and found the treatment that is working for us we

should step back and start to enjoy life and don't consume ourselves

with everything being Lyme. That doesn't mean to ignore anything,

on the contrary it means that once you have done everything you can

then don't stress over the Lyme and enjoy everything else in your

life to the best of your ability. The more you get back to

your " normal life " the better you will feel.

Because Lyme is a complex disease we must treat the mind, body and

spirit. One of the things I had to do was to stop thinking about

Lyme 24 hours a day. Once I did that I stopped stressing about all

of the " what ifS " and I stopped stressing about all of the little

things.

Continue to be very diligent about your treatment and your

recovery. Then go out and enjoy life to the best of your ability.

I know that sounds like a tall order now, but giving your mind a

break from Lyme will actually help you recover.

I recommend always getting your medical records. This is a good

normal practice and no doctor should every deny them to you. They

belong to you. If you do this regularly and file them when you get

home then when you need them it will be much easier to access them.

I believe that we can all recover from Lyme. My wife recovered, I'm

feeling great and my son is almost off of treatment.

Be well,

>

> For me its headaches (my symptoms seem to be from the neck up) and

increased anxiety. When on Ketek, I got tremendous ear aches I'm not

sure if that was a herx or a reaction to the meds.

>

[Guest guest]

Yeah,

I kinda figured that out. #1 realized I cannot be on line for 6-8 hours at a

time. I have to not answer every E-mail. As I have always noted in the past

someone will answer and I hope we all know that even though post don't come from

us all we are all still in each others thoughts.

Millie

McGillycuddy <@...> wrote:

Millie,

A valuable lesson that my LLMD taught me is that once we have done

our due dilligence and found the treatment that is working for us we

should step back and start to enjoy life and don't consume ourselves

with everything being Lyme. That doesn't mean to ignore anything,

on the contrary it means that once you have done everything you can

then don't stress over the Lyme and enjoy everything else in your

life to the best of your ability. The more you get back to

your " normal life " the better you will feel.

Because Lyme is a complex disease we must treat the mind, body and

spirit. One of the things I had to do was to stop thinking about

Lyme 24 hours a day. Once I did that I stopped stressing about all

of the " what ifS " and I stopped stressing about all of the little

things.

Continue to be very diligent about your treatment and your

recovery. Then go out and enjoy life to the best of your ability.

I know that sounds like a tall order now, but giving your mind a

break from Lyme will actually help you recover.

I recommend always getting your medical records. This is a good

normal practice and no doctor should every deny them to you. They

belong to you. If you do this regularly and file them when you get

home then when you need them it will be much easier to access them.

I believe that we can all recover from Lyme. My wife recovered, I'm

feeling great and my son is almost off of treatment.

Be well,

[Guest guest]

,

This is so interesting. I think started this thread. So,

thanks !

I didn't have any skin symptoms when I started Doxy.

I'm tired most of the time. When I have a good day, I'm good most of

the day. When I'm fatigued, I start the day fatigued and stay that

way all day. If I start the day tired, I might get better or worse.

I haven't noticed the mid-day tiredness you've experienced, but now

that I'm thinking about it, there are days when I think I might have

to go home after lunch because I feel like I'm moving at a snail's

pace. When that happens I go walk around, talk to people, and try to

wake up, so maybe I do experience it!

My LLMD has said people fighting Lyme need 9-10 hours of sleep.

That's hard for me to do during the work week, but if I don't get a

regular 9 hours, I have trouble getting up and then have to hustle

to make it to work on time.

Jessie

> >

> > ,

> >

> > Herxes are different for everybody and they depend on the

symptoms

> you

> > have. How quickly they start depends on what you're taking. And

> how

> > long the last also depends on what you're taking, how sick you

> are,

> > and what your symptoms are!

> >

> > Having said that, my experience is this: My first abx was 100 mg

> doxy,

> > 4 times a day. I Herxed about 4-5 days after starting it. My

hips,

> > thighs, and arms ached. I was terribly depressed. And I had

> horrible

> > brain fog -- couldn't concentrate, couldn't drive, couldn't read.

> >

> > Since then, my Herxes have usually been some combination of the

> > symptoms of the first Herx, with the addition of extreme fatigue

> or

> > tiredness (I make a distinction between fatigue and tiredness)

and

> a

> > sore throat sometimes. I've Herxed as quickly as 24 hours after

> taking

> > a different abx and as long as weeks into taking Buhner's

> protocol.

> >

> > My Herxes usually last 3 days or less and stop abruptly. I feel

> very

> > tired the day after ( " Herx hangover " I call it) and need extra

> sleep,

> > then feel very good for a day or two before going back to being

at

> > least mildly tired all the time.

> >

>

[Guest guest]

IND = indeterminate?

, have you been evaluated for anything else, like Chronic

Fatigue or Fibromyalgia?

Jessie

> > >

> > > thanks. I had a neck ache (ame one that comes and goes or is

there

> > > most of the time) and chills without fever. I also had a bad

> headache.

> > >

> > > You know-those were the same symptoms that I had when I had

lyme 6

> > > yrs ago. I remember being in bed all week til the doxy kicked

in.

> > >

> >

>

[Guest guest]

How about 11 hrs of sleep? My appetite is back. It was gone for over

a month for some reason. Maybe the doxy or supplements?

I have had my neckache and headaches most of the week. anyone get

headaches from Doxy? I usually just get migraines.

I am also fatigued. I do a little and then crash. I did too much

housework and then the buring legs came on.

ugggh. trying to keep up the hope. The drs. said I may feel a lot

better with treatment but never great.

In , " Jessie MacMillan "

<jessiemacmillan@y...> wrote:

>

> ,

>

> This is so interesting. I think started this thread. So,

> thanks !

>

> I didn't have any skin symptoms when I started Doxy.

>

> I'm tired most of the time. When I have a good day, I'm good most

of

> the day. When I'm fatigued, I start the day fatigued and stay that

> way all day. If I start the day tired, I might get better or

worse.

> I haven't noticed the mid-day tiredness you've experienced, but

now

> that I'm thinking about it, there are days when I think I might

have

> to go home after lunch because I feel like I'm moving at a snail's

> pace. When that happens I go walk around, talk to people, and try

to

> wake up, so maybe I do experience it!

>

> My LLMD has said people fighting Lyme need 9-10 hours of sleep.

> That's hard for me to do during the work week, but if I don't get

a

> regular 9 hours, I have trouble getting up and then have to hustle

> to make it to work on time.

>

> Jessie

>

>

>

> > >

> > > ,

> > >

> > > Herxes are different for everybody and they depend on the

> symptoms

> > you

> > > have. How quickly they start depends on what you're taking.

And

> > how

> > > long the last also depends on what you're taking, how sick you

> > are,

> > > and what your symptoms are!

> > >

> > > Having said that, my experience is this: My first abx was 100

mg

> > doxy,

> > > 4 times a day. I Herxed about 4-5 days after starting it. My

> hips,

> > > thighs, and arms ached. I was terribly depressed. And I had

> > horrible

> > > brain fog -- couldn't concentrate, couldn't drive, couldn't

read.

> > >

> > > Since then, my Herxes have usually been some combination of

the

> > > symptoms of the first Herx, with the addition of extreme

fatigue

> > or

> > > tiredness (I make a distinction between fatigue and tiredness)

> and

> > a

> > > sore throat sometimes. I've Herxed as quickly as 24 hours

after

> > taking

> > > a different abx and as long as weeks into taking Buhner's

> > protocol.

> > >

> > > My Herxes usually last 3 days or less and stop abruptly. I

feel

> > very

> > > tired the day after ( " Herx hangover " I call it) and need extra

> > sleep,

> > > then feel very good for a day or two before going back to

being

> at

> > > least mildly tired all the time.

> > >

> >

>

[Guest guest]

Hi Jessie-

I have a positive Dx of Fibromyalgia from about 4 drs. and

myofascial pain widespread. I have had bone scanes, MRIs of my body,

lab tests for RA, lupus, cat scratch, iron, sedimentation rate, etc.

etc. etc. Fibro started with neck pain about 2 months after the Lyme

disease. I had 2 and half weeks tx with doxy and felt better for a

little while. I had the bulls eye rash on my leg for about 3-4 weeks

and thought it was a fungus rash until I got sick with fever,

neckache, aching, and tingling head.

Well, now this lyme dr. said he thinks it is all lyme not treated

appropriately. Only thing I can do is trust him. There is nothing

left to help the pain. I had anemia and am supposed to go to a

hematologist due to low ferritin. No more drs!

No more drs.

In , " Jessie MacMillan "

<jessiemacmillan@y...> wrote:

>

> IND = indeterminate?

>

> , have you been evaluated for anything else, like Chronic

> Fatigue or Fibromyalgia?

>

> Jessie

>

>

> > > >

> > > > thanks. I had a neck ache (ame one that comes and goes or is

> there

> > > > most of the time) and chills without fever. I also had a bad

> > headache.

> > > >

> > > > You know-those were the same symptoms that I had when I had

> lyme 6

> > > > yrs ago. I remember being in bed all week til the doxy

kicked

> in.

> > > >

> > >

> >

>

[Guest guest]

gettting up?? That has always been a big problem. I am always late.

I have sleep problems and they got worse the same time I had lyme

and started traveling 80 % for work. I get in for meetings but it is

like h** waking up. I get in at 9-10 ish and work later.

It kinda of rots huh?? I am not giving up work. Besides the money, I

really like what I do. I wish Companies had a rest bed for lunch

breaks--which I hardly take BUT i would if I could have a bed.

In , " Jessie MacMillan "

<jessiemacmillan@y...> wrote:

>

> ,

>

> This is so interesting. I think started this thread. So,

> thanks !

>

> I didn't have any skin symptoms when I started Doxy.

>

> I'm tired most of the time. When I have a good day, I'm good most

of

> the day. When I'm fatigued, I start the day fatigued and stay that

> way all day. If I start the day tired, I might get better or

worse.

> I haven't noticed the mid-day tiredness you've experienced, but

now

> that I'm thinking about it, there are days when I think I might

have

> to go home after lunch because I feel like I'm moving at a snail's

> pace. When that happens I go walk around, talk to people, and try

to

> wake up, so maybe I do experience it!

>

> My LLMD has said people fighting Lyme need 9-10 hours of sleep.

> That's hard for me to do during the work week, but if I don't get

a

> regular 9 hours, I have trouble getting up and then have to hustle

> to make it to work on time.

>

> Jessie

>

>

>

> > >

> > > ,

> > >

> > > Herxes are different for everybody and they depend on the

> symptoms

> > you

> > > have. How quickly they start depends on what you're taking.

And

> > how

> > > long the last also depends on what you're taking, how sick you

> > are,

> > > and what your symptoms are!

> > >

> > > Having said that, my experience is this: My first abx was 100

mg

> > doxy,

> > > 4 times a day. I Herxed about 4-5 days after starting it. My

> hips,

> > > thighs, and arms ached. I was terribly depressed. And I had

> > horrible

> > > brain fog -- couldn't concentrate, couldn't drive, couldn't

read.

> > >

> > > Since then, my Herxes have usually been some combination of

the

> > > symptoms of the first Herx, with the addition of extreme

fatigue

> > or

> > > tiredness (I make a distinction between fatigue and tiredness)

> and

> > a

> > > sore throat sometimes. I've Herxed as quickly as 24 hours

after

> > taking

> > > a different abx and as long as weeks into taking Buhner's

> > protocol.

> > >

> > > My Herxes usually last 3 days or less and stop abruptly. I

feel

> > very

> > > tired the day after ( " Herx hangover " I call it) and need extra

> > sleep,

> > > then feel very good for a day or two before going back to

being

> at

> > > least mildly tired all the time.

> > >

> >

>

[Guest guest]

I agree with you also.

I've noticed after being off the doxy that my arms and legs get

tingly (fall asleep) much more readily again (this had stopped while

on the Doxy), even tho I've been on the Ceftin and then Zithro and

tomorrow will start the Flagyl- imagine the Lyme/co is back in my

bloodstream free flating.

On the Ceftin I began to itch without a rash persea- just a few red

spots. The Zithro has been hitting the stuff in my brain controlling

emotions and sleep- have had some rough nights/days.(Anger,

frustration, guilt, sadness,etc) I have to literally talk myself

into realizing it's a herx and it's hard and I have to again

literally bit my tongue and try to stay away as much as I can

sometimes from my family, so I don't say something that I'll regret.

Usually the next day/ several hours later I'm more fatigued like

I've been in a mini battle and have to regroup, but the hopeless,

helpless feeling is not totally gone, but much better.

When I was on the Doxy the night sweats eventually stopped and I'm

only " warm " occasionally at night at least so far.

I still will have aches and pains, altho they have diminished in

frequency and duration and intensity. For the last 2 weeks or so my

lower back esp on the right hasn't bothered much at all. My stiff

neck is much better. Left ball of foot still bothers generally

before something else gets worse- so that's kind of my signal now

(it used to be my lower back).

Fatigue is there off and on. I tend to overdo when feeling better,

so many times it's an every other day thing.

Brain fog is basically ok since being on the diflucan (generic one

of that)-word finding and etc, altho I still forget things sometimes.

> > > > > >

> > > > > > thanks. I had a neck ache (ame one that comes and goes

or is

> > > there

> > > > > > most of the time) and chills without fever. I also had a

bad

> > > > headache.

> > > > > >

> > > > > > You know-those were the same symptoms that I had when I

had

> > > lyme 6

> > > > > > yrs ago. I remember being in bed all week til the doxy

> > kicked

> > > in.

> > > > > >

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

> > For up to date information about Lyme disease and the known co-

infections

> > delivered to your email address see:

> > Robynns_Lyme_List/

> >

> >

[Guest guest]

I talked to my dr tonight. I had to switch to amoxicillin. The hard

part is that he is treating me based on past hx and clincial history

now. He does not care what the tests report. If the antis help me

then there is support for Lyme. He had little time to talk so Next

time, I have questions about the Fibro and tenderpoints going away.

He did say he has helped many pts like me.

What if the antis do not work?

In , " /Rodney " <rod@g...> wrote:

>

> I think that these other dxes, such as FMS, MFPS, etc, are all side

> diagnosis to Lyme. Meaning, the Lyme causes them. While I do think

there is

> such a thing as FMS, caused by an accident etc, I think that a lot

of FMS

> out there isnt 'just' FMS, but another symptom of something

greater. FMS

> has no known cause, the 'test' for it is basic, most people with a

chronic

> illness will have those trigger points.

>

>

>

>

>

> > Hi Jessie-

> >

> > I have a positive Dx of Fibromyalgia from about 4 drs. and

> > myofascial pain widespread. I have had bone scanes, MRIs of my

body,

> > lab tests for RA, lupus, cat scratch, iron, sedimentation rate,

etc.

> > etc. etc. Fibro started with neck pain about 2 months after the

Lyme

> > disease. I had 2 and half weeks tx with doxy and felt better for

a

> > little while. I had the bulls eye rash on my leg for about 3-4

weeks

> > and thought it was a fungus rash until I got sick with fever,

> > neckache, aching, and tingling head.

> >

> >

> > Well, now this lyme dr. said he thinks it is all lyme not treated

> > appropriately. Only thing I can do is trust him. There is nothing

> > left to help the pain. I had anemia and am supposed to go to a

> > hematologist due to low ferritin. No more drs!

> >

> > No more drs.

> >

> >

> > In , " Jessie MacMillan "

> > <jessiemacmillan@y...> wrote:

> > >

> > > IND = indeterminate?

> > >

> > > , have you been evaluated for anything else, like

Chronic

> > > Fatigue or Fibromyalgia?

> > >

> > > Jessie

> > >

> > >

> > > > > >

> > > > > > thanks. I had a neck ache (ame one that comes and goes

or is

> > > there

> > > > > > most of the time) and chills without fever. I also had a

bad

> > > > headache.

> > > > > >

> > > > > > You know-those were the same symptoms that I had when I

had

> > > lyme 6

> > > > > > yrs ago. I remember being in bed all week til the doxy

> > kicked

> > > in.

> > > > > >

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

> > For up to date information about Lyme disease and the known co-

infections

> > delivered to your email address see:

> > Robynns_Lyme_List/

> >

> >

[Guest guest]

-heather-

did your FMS improve yet? The goal for me is to lessen the pain and

fatigue. I still have lower back pain and some neck pain due to

degeneration. The dr. said only trial will tell if the FMS will go

away or lessen. He said there are lots of pts. that he treats and

some do get better. Frustrating. I have to wait a few weeks to talk

to him again. He said if you start feeling better on the antibiotics

that will be the test....I don't feel better BUT he did say I could

herx.

-You have been sick for a long time. Glad you got disability.

- In , " /Rodney " <rod@g...> wrote:

>

> Hi , here *-) For me, some abx worked, some

not so much.

> For me I need that herx to show the abx are doing there thing.

However I

> will also do MUCH worse on abx, while most seem to get relief.

Its odd, but

> I think its because I went 17 confirmed years misdiagnosed, but

Mom seems to

> think I had/got over Lyme about 10 years prior to that.

> I have FMS symptoms most of the time, however on abx they can

be really

> bad. Fms is also one of my side diagnosis and I think that they (

all the

> side dxes) helped me get SSD.

>

>

>

> > I talked to my dr tonight. I had to switch to amoxicillin. The

hard

> > part is that he is treating me based on past hx and clincial

history

> > now. He does not care what the tests report. If the antis help me

> > then there is support for Lyme. He had little time to talk so

Next

> > time, I have questions about the Fibro and tenderpoints going

away.

> > He did say he has helped many pts like me.

> >

> > What if the antis do not work?

> >

> > In , " /Rodney " <rod@g...> wrote:

> > >

> > > I think that these other dxes, such as FMS, MFPS, etc, are all

side

> > > diagnosis to Lyme. Meaning, the Lyme causes them. While I do

think

> > there is

> > > such a thing as FMS, caused by an accident etc, I think that a

lot

> > of FMS

> > > out there isnt 'just' FMS, but another symptom of something

> > greater. FMS

> > > has no known cause, the 'test' for it is basic, most people

with a

> > chronic

> > > illness will have those trigger points.

> > >

> > >

> > >

> > >

> > >

> > > > Hi Jessie-

> > > >

> > > > I have a positive Dx of Fibromyalgia from about 4 drs. and

> > > > myofascial pain widespread. I have had bone scanes, MRIs of

my

> > body,

> > > > lab tests for RA, lupus, cat scratch, iron, sedimentation

rate,

> > etc.

> > > > etc. etc. Fibro started with neck pain about 2 months after

the

> > Lyme

> > > > disease. I had 2 and half weeks tx with doxy and felt better

for

> > a

> > > > little while. I had the bulls eye rash on my leg for about 3-

4

> > weeks

> > > > and thought it was a fungus rash until I got sick with fever,

> > > > neckache, aching, and tingling head.

> > > >

> > > >

> > > > Well, now this lyme dr. said he thinks it is all lyme not

treated

> > > > appropriately. Only thing I can do is trust him. There is

nothing

> > > > left to help the pain. I had anemia and am supposed to go to

a

> > > > hematologist due to low ferritin. No more drs!

> > > >

> > > > No more drs.

> > > >

> > > >

> > > > In , " Jessie MacMillan "

> > > > <jessiemacmillan@y...> wrote:

> > > > >

> > > > > IND = indeterminate?

> > > > >

> > > > > , have you been evaluated for anything else, like

> > Chronic

> > > > > Fatigue or Fibromyalgia?

> > > > >

> > > > > Jessie

> > > > >

> > > > >

> > > > > > > >

> > > > > > > > thanks. I had a neck ache (ame one that comes and

goes

> > or is

> > > > > there

> > > > > > > > most of the time) and chills without fever. I also

had a

> > bad

> > > > > > headache.

> > > > > > > >

> > > > > > > > You know-those were the same symptoms that I had

when I

> > had

> > > > > lyme 6

> > > > > > > > yrs ago. I remember being in bed all week til the

doxy

> > > > kicked

> > > > > in.

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > For up to date information about Lyme disease and the known

co-

> > infections

> > > > delivered to your email address see:

> > > > Robynns_Lyme_List/

> > > >

> > > >

[Guest guest]

,

What type of cardiac issues do you have from Lyme? Are they from the

disease or do you think you got them " independently " ? Thank you and I

hope you are feeling better!

>

> >

> > did your FMS improve yet?

>

>

> I was dxed 6-99, did constant abx ( different types/rounds) untill

3/03.

> Took about 2 months for them to clear my system and for me to feel

'normal'

> again. Had a WONDERFULL 6-8 months, was actually considering trying

to work

> again. But then symptoms have started creeping back. During that

remission

> nearly everything was gone or at least abbatted so much that I didnt

notice

> them.

> Now I am back about to the point I was pre-dx and am slowly

working my

> way up to the correct dosage of abx. I have to take it slow because

I have

> cardiac issues from the Lyme. Doesnt hurt that I am a BIG OL wuss

who got

> really tired of feeling so dang crappy for 4+ years *-) weird how

I will

> deal with symptoms, but least I can ride now LOL cant when on abx,

just to

> darn painfull and talk about fatigue! OY!! *-)

>