Good news/Bad news

[Guest guest]

Hi ,

It sounds like a herx to me. One of our support group members had to really

slow her drip down and take Benadryl before the drip. He would herx at every

drop.

Hang in there.

Connie, MI

[Guest guest]

,

Sounds like an allergic reaction to the Rocephin, maybe you could ask to

try Claforan. I did well on that drug, I think it has to be infused twice

daily, but it also is much better on the gall bladder. What kind of

steroids did your doc order.....that worries me, as I know that steroids and

Lyme do not mix!

Hugs,

Marta

-

>From: lc lott <lclott@...>

>

>Hi all-

>Well the good news as you all know is that i got my pic line put in on

>Monday. Everyhting went well as far as the insertion. The problem has

>been the IV Rocephin.

>They did the first dose at the hospital and everyhting was fine until i

>was on the way home. I started to have the same chest pain i have been

>having only it was more intense. It was gone by the time I got home so

>i didnt really think anymore of it. Tues got my 2nd dose and within 2

>mins of starting the infusion another round of chest pain. It went away

>after about 5 mins and was fine until that evening. I noticed some

>blister like spots on my fingers and then my knees,ankles and elbows

>started itching like mosquito bites itch.

[Guest guest]

Hi I don't want ot alarm you but I heard that steroids are really bad

for Lyme. Plese check this out. -Val

[Guest guest]

lc lott wrote:

>

> From: lc lott <lclott@...>

>

> Hi all-

>

> long as i know that its not going to be life threatning. Any ideas?

> Sorry this is so long.

> Thanks for the input. You guys are great.

>

Dear : My 13 year old son was on IV Rocephin for 10 days, and did

wonderfully well. His brain-fogging cleared up, and he seemed like his

old self again. But, on the 10th day, he developed a rash that went

from his head to his toes, and he had a little trouble breathing when he

stood up. We took him to the ER and they told us he was having an

allergic reaction, so the Rocephin was stopped. Unfortunately, he

hasn't done well on his next drug, which is IV Zithro [i'm just the

opposite - Rocephin really dragged me down, but I feel better on

Zithro].

I asked the ER doc and the LLMD whether we could try the Rocephin

again, but in smaller doses. They both told me that the problem with

this is that people die every year of allergic reactions to medication,

and they'd just be playing with fire. I was almost tempted to try the

Rocephin on him anyway, because living with lyme and without the use of

your brain is so upsetting that it's worth risking your life. But, I

took hold of my senses and we go on, hoping that something else will

work.

Lovette

[Guest guest]

Lovette,

Have you considered Claforan? I did well on that IV drug, only problem

is two infusions a day, opposed to one for Rocephin. Something to consider.

Hugs,

Marta

-

>From: " F. Mott " <smott@...>

>

We took him to the ER and they told us he was having an

>allergic reaction, so the Rocephin was stopped. Unfortunately, he

>hasn't done well on his next drug, which is IV Zithro [i'm just the

>opposite - Rocephin really dragged me down, but I feel better on

>Zithro].

> I asked the ER doc and the LLMD whether we could try the Rocephin

>again, but in smaller doses. They both told me that the problem with

>this is that people die every year of allergic reactions to medication,

>and they'd just be playing with fire. I was almost tempted to try the

>Rocephin on him anyway, because living with lyme and without the use of

>your brain is so upsetting that it's worth risking your life. But, I

>took hold of my senses and we go on, hoping that something else will

>work.

>

>

[Guest guest]

Hi ,

Sounds good to me. All I know about steroids is that for years they are bad

for lyme and do mess up tests.

You really sound like it is a herx to me. I still think slowing down would be

better.

Hugs,

Connie

[Guest guest]

, Are you on any other antibiotics now? the steroids have no

antibacerial qualities and are used mostly as antiinflamitories which lower

you immune system (white Blood cells0 so that they don't cause inflamation.

Most autoimmune disorders cause an increase in white blood cells which cause

the imflamatio. With this diease we need all the whilte blood cless we cn get

so lowering the immune system is usually not a good idea. Check with your

doctor about this. Let me know what hapens Feel better-Val

[Guest guest]

--- ValP74@... wrote:

> From: ValP74@...

>

> Hi I don't want ot alarm you but I heard that

> steroids are really bad

> for Lyme. Plese check this out. -Val

>

> Val-

What are the problems with steroids? I tried to find info on it and

couldnt find anything. I really dont think this is an allergic

reaction. I really think im herxing. Esp after all the feedback from

you guys. Today i have spiked a temp. its running around 100 and im not

trying to bring it down. First time my temp has beeen above 97.6 in a

long time. Also my back is getting sore again. The rocephin washelping

it i think.

I do know i feel much worse today being off the rocephin and am still

having chest pain by the way.

Take care.

L(MI)

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_________________________________________________________

[Guest guest]

--- " F. Mott " <smott@...> wrote:

> From: " F. Mott " <smott@...>

>

> l

> >

> >

> >

> Dear : My 13 year old son was on IV Rocephin

> for 10 days, and did

> wonderfully well. His brain-fogging cleared up, and

> he seemed like his

> old self again. But, on the 10th day, he developed

> a rash that went

> from his head to his toes, and he had a little

> trouble breathing when he

> stood up. We took him to the ER and they told us he

> was having an

> allergic reaction, so the Rocephin was stopped.

>

> Lovette-

Thanks for the input. I am still having the chest pain and did not have

a dose of rocephin today so i really think it is a herx. Guess ill find

out tomorrow when i see my LLD.

Hope you and your son are doing well.

L(MI)

>

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_________________________________________________________

[Guest guest]

--- Cslyme@... wrote:

> From: Cslyme@...

>

> Hi ,

> It sounds like a herx to me. One of our support

> group members had to really

> slow her drip down and take Benadryl before the

> drip. He would herx at every

> drop.

> Hang in there.

> Connie, MI

>

> Connie-

I tried to tell the nurse to run it in slow but she was afraid of

clotting my pic line if it ran that slow so she turned it up to go in

faster.

As soon as she did that the chest pain hit. I think Dr. V was confused

and so stopped it and put me on steroids and benadryl. I am still

having the chest pain and the knee pain and back pain are worse . I

also have a temp of 100 all day today. Sounding more and more like a

herx even to me. I am going to try to talk him into a 250cc bag instead

of the 50cc so i can run it in over 1-2 hrs instead of 30 mins.

L(MI)

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_________________________________________________________

[Guest guest]

--- J & M McCoy <mlmccoy@...> wrote:

> From: " J & M McCoy " <mlmccoy@...>

>

> ,

> Sounds like an allergic reaction to the Rocephin,

> maybe you could ask to

> try Claforan. I did well on that drug, I think it

> has to be infused twice

> daily, but it also is much better on the gall

> bladder. What kind of

> steroids did your doc order.....that worries me, as

> I know that steroids and

> Lyme do not mix!

> Hugs,

> Marta

> -

> Marta-

I really think its a herx. im having the same chest pain off and on all

day today and didnt take a dose today. The steroids are Depomedrol. I

had a 40mg injection yesterday nad started the dose pack (6 days)

last nite. What are the problems with steroids? I cant find any info on

it.

L (MI)

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_________________________________________________________

[Guest guest]

just for the record on the 10th day of rocefin i thought i too was gonna

DIE. i had tremendous back pain, hot and cold sweats, neck lymph nodes

swollen and painful to touch, aching all over. really thought i was gonna

have to go to the ER. never in my life have i felt so bad. my feet were

really itchy but no bumps, but i mean so itchy that it drove you NUTS. my

dr. insisted it was not a hexy. reaction and to stop immediately. does

anyone know what this was? i too wanted to skip a day and then get back on

but was afraid it would KILL me. RE

>From: " F. Mott " <smott@...>

>

>lc lott wrote:

>>

>> From: lc lott <lclott@...>

>>

>> Hi all-

>>

>> long as i know that its not going to be life threatning. Any ideas?

>> Sorry this is so long.

>> Thanks for the input. You guys are great.

>>

>Dear : My 13 year old son was on IV Rocephin for 10 days, and did

>wonderfully well. His brain-fogging cleared up, and he seemed like his

>old self again. But, on the 10th day, he developed a rash that went

>from his head to his toes, and he had a little trouble breathing when he

>stood up. We took him to the ER and they told us he was having an

>allergic reaction, so the Rocephin was stopped. Unfortunately, he

>hasn't done well on his next drug, which is IV Zithro [i'm just the

>opposite - Rocephin really dragged me down, but I feel better on

>Zithro].

> I asked the ER doc and the LLMD whether we could try the Rocephin

>again, but in smaller doses. They both told me that the problem with

>this is that people die every year of allergic reactions to medication,

>and they'd just be playing with fire. I was almost tempted to try the

>Rocephin on him anyway, because living with lyme and without the use of

>your brain is so upsetting that it's worth risking your life. But, I

>took hold of my senses and we go on, hoping that something else will

>work.

>

>Lovette

>

>

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(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

[Guest guest]

--- ValP74@... wrote:

> From: ValP74@...

>

> , Are you on any other antibiotics now? the

> steroids have no

> antibacerial qualities and are used mostly as

> antiinflamitories which lower

> you immune system (white Blood cells0 so that they

> don't cause inflamation.

> Most autoimmune disorders cause an increase in white

> blood cells which cause

> the imflamatio. With this diease we need all the

> whilte blood cless we cn get

> so lowering the immune system is usually not a good

> idea. Check with your

> doctor about this. Let me know what hapens Feel

> better-Val

>

> Val-

He put me on Depo-Medrol to counteract what may or may not be an

allergic reaction to the IV Rocephin. I see him tomorrow and we are

going to talk more. I really think this is a herx versus an allergic

reaction. I am still having the chest pain as well as a fever and my

legs are jumping all over the place. Si i think its just the Rocephin

doing its job. I also think i need a very slow infusion. The nurse was

in a huury i think and as soon as she let it run in faster is when the

chest pain started. As far as my white count i have always hade an

abnormally high white count. One doc thought i had leukemia when i was

younger. Scared my poor mom half to death.

Anyway i will find out tomorrow what the plan is.

L(MI)

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_________________________________________________________

[Guest guest]

--- Cslyme@... wrote:

> From: Cslyme@...

>

> Hi ,

> Sounds good to me. All I know about steroids is

> that for years they are bad

> for lyme and do mess up tests.

> You really sound like it is a herx to me. I still

> think slowing down would be

> better.

> Hugs,

> Connie

>

> Connie-

I am going to do my best to convince him not to stop the Rocephin. As

long as its not going to kill me i want to continue it. I think Dr. V

is reasonable and will agree that it is a herx. Find out tomorrow.

L(MI)

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_________________________________________________________

[Guest guest]

Hi ,

I have posted separately information I found about steroid use and Lyme,

I hope they answer your questions,

Hugs,

Marta

>From: lc lott <lclott@...>

>> Marta-

>I really think its a herx. im having the same chest pain off and on all

>day today and didnt take a dose today. The steroids are Depomedrol. I

>had a 40mg injection yesterday nad started the dose pack (6 days)

>last nite. What are the problems with steroids? I cant find any info on

>it.

> L (MI)

>

[Guest guest]

,

That sounds like a herx to me, I had those itchies too, they were awful,

nothing helped. I used to use a wire brush, but the only relief I got was

time passing and then it stopped.

Marta

>From: mimianne@...

>

>just for the record on the 10th day of rocefin i thought i too was gonna

>DIE. i had tremendous back pain, hot and cold sweats, neck lymph nodes

>swollen and painful to touch, aching all over. really thought i was gonna

>have to go to the ER. never in my life have i felt so bad. my feet were

>really itchy but no bumps, but i mean so itchy that it drove you NUTS. my

>dr. insisted it was not a hexy. reaction and to stop immediately. does

>anyone know what this was? i too wanted to skip a day and then get back

on

>but was afraid it would KILL me. RE

>

[Guest guest]

yes..........it was heel splints that formed after the lyme........could

hardly walk til two winters ago when I fell off my roof while shoveling

snow.........been cured ever since.......just make sure you have a

single story home and a large snow bank to fall into ;-)

.........lymebrain

>

> From: mimianne@...

>

> the balls of my feet have hurt now for over 1 year, w/pain

> medicine. anyone else have severe ball o' feet pain?

>

>

[Guest guest]

Hi ,

I too have always had a high white blood count, almost kept me from

getting a job once when I had the physical. Yet, when I attempted to get

treated for Lyme and had an even higher white blood count, the idiot doctors

I saw didn't seem to mind it.

Marta

>From: lc lott <lclott@...>

>>>

As far as my white count i have always hade an

>abnormally high white count. One doc thought i had leukemia when i was

>younger. Scared my poor mom half to death.

>Anyway i will find out tomorrow what the plan is.

> L(MI)

[Guest guest]

oh i am so glad that i was RIGHT. those @#$@#$@# drs. i had this reaction

on NEW YEARS EVE. of course my dr. was out whooping it up and was

unreachable!!!!!!!! i was having a real good time passing in and out of

consciousness!!!! i usually get some relief by soaking my feet in epson s.

or some sort of seasalt stuff .. even this did not help and i knew i was in

deep dodo! the balls of my feet have hurt now for over 1 year, w/pain

medicine. anyone else have severe ball o' feet pain?

>From: " J & M McCoy " <mlmccoy@...>

>

>,

> That sounds like a herx to me, I had those itchies too, they were awful,

>nothing helped. I used to use a wire brush, but the only relief I got was

>time passing and then it stopped.

>Marta

>

>

>>From: mimianne@...

>>

>>just for the record on the 10th day of rocefin i thought i too was gonna

>>DIE. i had tremendous back pain, hot and cold sweats, neck lymph nodes

>>swollen and painful to touch, aching all over. really thought i was gonna

>>have to go to the ER. never in my life have i felt so bad. my feet were

>>really itchy but no bumps, but i mean so itchy that it drove you NUTS. my

>>dr. insisted it was not a hexy. reaction and to stop immediately. does

>>anyone know what this was? i too wanted to skip a day and then get back

>on

>>but was afraid it would KILL me. RE

>>

>

>

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Pulaski, VA 24301

[Guest guest]

mimianne@... wrote:

> From: mimianne@...

>

> oh i am so glad that i was RIGHT. those @#$@#$@# drs. i had this reaction

> on NEW YEARS EVE. of course my dr. was out whooping it up and was

> unreachable!!!!!!!! i was having a real good time passing in and out of

> consciousness!!!! i usually get some relief by soaking my feet in epson s.

> or some sort of seasalt stuff .. even this did not help and i knew i was in

> deep dodo! the balls of my feet have hurt now for over 1 year, w/pain

> medicine. anyone else have severe ball o' feet pain?

>

I've had the pain in the bottom of my feet -- it's called plantar fascitis. It's

resolved with the antibiotics. It's awful -- feels like I'm stepping on a

marble.

I had a similar problem on my right palm, and since I drive a stickshift about

65

miles per day, that was really fun too. But these have gone away except for when

I herx.

Jean

Jean

[Guest guest]

,

You should do some checking about the steriods. Lyme patients should not

take steriods. ......

[Lyme-aid] good news/bad news

>From: lc lott <lclott@...>

>

>Hi all-

>Well the good news as you all know is that i got my pic line put in on

>Monday. Everyhting went well as far as the insertion. The problem has

>been the IV Rocephin.

>They did the first dose at the hospital and everyhting was fine until i

>was on the way home. I started to have the same chest pain i have been

>having only it was more intense. It was gone by the time I got home so

>i didnt really think anymore of it. Tues got my 2nd dose and within 2

>mins of starting the infusion another round of chest pain. It went away

>after about 5 mins and was fine until that evening. I noticed some

>blister like spots on my fingers and then my knees,ankles and elbows

>started itching like mosquito bites itch. There was no rash or itching

>anywhere else. Just around the joints. Mentioned it to the nurse and

>she called my doc who told me to take benadryl. That seemed to solve

>the problem. Then this am the nurse came for my 3rd dose. Things were

>fine until she started to infuse it faster and the chest pain hit along

>with the feeling that i was going to pass out. I also got very cold.

>She called the doc and now im off the rocephin and on 50mg of benadryl

>4x aday as well as steroids for 6 days. I am seeing him Friday and

>thought i would see if anyone has had similar problems with IV

>Rocephin. The pharmacist

>from the infusion co said she has heard of that happening with lyme pts

>and she thinks it is a herx.

>If so i dont want to stop the rocephin. I can live with the symptoms as

>long as i know that its not going to be life threatning. Any ideas?

>Sorry this is so long.

>Thanks for the input. You guys are great.

> L(MI)

>

>_________________________________________________________

>

[Guest guest]

Hi ,

Yes, foot pain was one of my first symptoms, I could barely walk at all.

Still have it now, but only when I first start walking after sitting down

awhile, then it eases up.

Best to you,

Marta

-

>From: mimianne@...

>

>oh i am so glad that i was RIGHT. those @#$@#$@# drs. i had this reaction

>on NEW YEARS EVE. of course my dr. was out whooping it up and was

>unreachable!!!!!!!! i was having a real good time passing in and out of

>consciousness!!!! i usually get some relief by soaking my feet in epson s.

>or some sort of seasalt stuff .. even this did not help and i knew i was in

>deep dodo! the balls of my feet have hurt now for over 1 year, w/pain

>medicine. anyone else have severe ball o' feet pain?

>

>>From: " J & M McCoy " <mlmccoy@...>

>>

>>,

>> That sounds like a herx to me, I had those itchies too, they were

awful,

>>nothing helped. I used to use a wire brush, but the only relief I got was

>>time passing and then it stopped.

>>Marta

>>

>>

>>>From: mimianne@...

>>>

>>>just for the record on the 10th day of rocefin i thought i too was gonna

>>>DIE. i had tremendous back pain, hot and cold sweats, neck lymph nodes

>>>swollen and painful to touch, aching all over. really thought i was gonna

>>>have to go to the ER. never in my life have i felt so bad. my feet were

>>>really itchy but no bumps, but i mean so itchy that it drove you NUTS.

my

>>>dr. insisted it was not a hexy. reaction and to stop immediately. does

>>>anyone know what this was? i too wanted to skip a day and then get back

>>on

>>>but was afraid it would KILL me. RE

>>>

>>

>>

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>>

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> (540) 980-6464

> 93 W. Main Street

> Pulaski, VA 24301

>

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[Guest guest]

Hi Sherrie,

I developed a heel spur on my left foot, all my symptoms were on my left

side, my doctor sent me to a Podiatrist who injected it with cortisone, and

it has been fine for over a year now. I questioned my doctor about the

cortisone, but he said it was ok, just don't take it orally.

Shoveling snow off the roof? Hmmm, that wasn't too smart, glad you lived

to tell the story. I fall off a two step ladder and I thought I was bad.

Hugs,

Marta

>From: sherri borgquist <srb13741@...>

>

>yes..........it was heel splints that formed after the lyme........could

>hardly walk til two winters ago when I fell off my roof while shoveling

>snow.........been cured ever since.......just make sure you have a

>single story home and a large snow bank to fall into ;-)

>........lymebrain

>>

[Guest guest]

i think a fall from a roof is just what i am looking for!!!!!!

>From: " J & M McCoy " <mlmccoy@...>

>

>Hi Sherrie,

> I developed a heel spur on my left foot, all my symptoms were on my left

>side, my doctor sent me to a Podiatrist who injected it with cortisone, and

>it has been fine for over a year now. I questioned my doctor about the

>cortisone, but he said it was ok, just don't take it orally.

> Shoveling snow off the roof? Hmmm, that wasn't too smart, glad you lived

>to tell the story. I fall off a two step ladder and I thought I was bad.

>Hugs,

>Marta

>

>

>>From: sherri borgquist <srb13741@...>

>>

>>yes..........it was heel splints that formed after the lyme........could

>>hardly walk til two winters ago when I fell off my roof while shoveling

>>snow.........been cured ever since.......just make sure you have a

>>single story home and a large snow bank to fall into ;-)

>>........lymebrain

>>>

>

>

>

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MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

[Guest guest]

In a message dated 99-05-14 02:02:36 EDT, you write:

<<

>>

, dsince you have been having the chest pain and lages jumping and fevers

is is a constant thing going on all the time or does it kind of come and go?

Please let me know when you get a chance. Feel better Good Luck at the Doc-Val