herx

[Guest guest]

Dear Lovette,

I am supposed to start rocephin IV on Monday, I'm a little scared. I seen a

new doc and he feels it is necessary. He found a click and a murmer in my

heart that wasn't there before lyme. How long before you started to feel sick

on IV. Did you try orals before?

Thanks for the info.

Sandy

[Guest guest]

Hi Lovette,

Sounds like a herx to me, nearly everyone I have talked to about Lyme

herx reactions refers to that Mack truck. The only consolation I can give

you is that it will come to an end, and you just must hang in there till it

is done. Here are some explanations I saved in my word file, that may also

give you some help:

The Short Definition:

Jarisch-Herxheimer reaction (“herxing”) is an exacerbation of symptoms in

people with Lyme disease (also syphillis) upon taking antibiotics. It is

thought to be due to the effects of toxins produced by the organism during

it’s

die-off and the resulting immune system response.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A Much More Detailed Explanation:

from Lyme Disease 1991-patient /physician perspective

Jarisch-Herxheimer Reaction

H. Katzel, M.D.

Dorland’s Illustrated medical Dictionary says this about the

Jarisch-Herxheimer Reaction: “An increase is syphilitic symptoms after

administration of antisyphillitic drugs.” Although it is an illustrated

dictionary, there is no illustration next to the words. I wonder what they

would put next to such a definition......I suppose if they were to

illustrate

the Jarisch-Herxheimer Reaction, they would have to put a patient with

syphilis

or, more recently, a Lyme borreliosis patient standing in fright with

extremities extended and large circles radiating from his eyes. We’re

talking

about one terrible feeling person.

From back in the 1960’s, Professor Harvey described the Herxheimer Reaction

as

an acute febrile reaction which may develope after treatment of late

syphilis

has begun. But Professor Harvey felt that this was a rare phenomena and

such

reactions were more common in patients with paresis, and he felt that they

might be associated with a trasient increase in agitation and confusion as

well

as with fever and convulsions. His suggestion was that small doses of

adrenal

corticosteroids such as 20 mg. prednisone per day usually prevent or

ameliorate the Herxheimer Reaction.

Events similar to this Herxheimer type Reaction have been described in other

disease states. I recently attended a medical conference where an

experienced

middle-aged man physician/pathologist descibed “crashing” and episodes of

death

after one dose of IV penicillin for children with meningoccoccemia. Whether

the death of these children was due to acute, fulminating

Waterhouse-Friderichsen syndrome or whether the deaths were due to a

Herxheimer-type Reaction to one dose of penicillin is still unclear. The

description of these events, which happened 40-50 years ago, is stilll vivid

in

the memories of these physicians. At times they were reluctant (but knew

they

had no choice) in giving the penicillin to these sick children who they knew

would die if not treated and who might die from another cause with

treatment.

The Herxheimer-type Reaction is somewhat different in Lyme....Because Lyme

is

caused by a spirochete, much of what we learn and think about Lyme

borreliosis

comes from our experience with syphilis. In the early stages of killing the

Lyme spirochete (Borrelia burgdorferi) with antibiotics this Hexheimer type

Reaction can be found if looked for. Apparently it comes at different

times.

With I.V. antibiotics it may be noted within days of treatment; with oral

antibiotics it may be noted within days to weeks of treatment. When these

antibiotics begin to destroy the Lyme spirochete, a toxin is given off

causing

either direct reations or indirect actions through stimulation of the immune

system. The symptoms can vary from systemic reactions such as a low blood

pressure, fever,chills and hives, to more specific symptoms such as increase

in

joint pain, headaches, rash or in general, a reversal or worsening of the

Lyme

symptom complex.

Jarisch-Hexheimer Reaction should be watched for when treating Lyme

borreliosis

patients, and the patient should be adequately warned about this phenomenom.

Mistaking the Herxheimer reaction for an allergic reaction to antibiotics or

serum sickness or some other catastrophe might lead to prematurely stopping

the antibiotics on the part of the physician on non-compliance in taking the

medications on the part of the patient. When starting antibiotics, one

expects

to feel better, not worse. But if warned that there may be a period where

symptoms recur or flare up during this reaction , better compliance can be

expected. Herxheimer reactions are at least ten times more common than

true

allergic reactions to antibiotics.

Steroids are not recommended at this time for Herxheimer Reaction in Lyme

patients. The best treatment is knowledge of the process so that panic

attacks, anxiety and worry do not occur. Benadryl, which is an

antihistamine,

can be used to lessen the symptoms, and sometimes changing the dose and/or

timing of the antibiotics is needed to make the reaction less symptomatic.

So next time you start antibiotics, ask your physician whether or not you

should expect a Herxheimer Reaction to occur. It may be a learning

experience

for both of you, I’m not aware of any deaths from Herxheimer Reaction in

treating Lyme borreliosis. So give me a Herxheimer Reaction over an

allergic

reaction any time.”

******************************************************************

From Vanderhoof-Forschner’s Book, [1997] “Everything You Need To Know

About Lyme Disease”:

What is a Herxheimer reaction?

Answer: The term was originally used to describe a reaction that occurred

6-10

hours after the initial treatment for syphilis. It consisted of transient

fever and a brief exacerbation of visible lesions. It is thought that this

is

caused by either an allergic response to antigens or foreign substances

released by the organism when it is killed or that these substances may have

endotoxic properties. Much the same situation occurs during the treatment

of

Lyme disease. Patients encounter a variety of symptoms which may include

fever, chills, rash and increased symptomatology. Usually this reaction is

seen with IV therapy but it can occur during oral antibiotic therapy as

well.

The point at which it happens during therapy varies from one antibiotic to

another but generally it does not occur prior to day 10. However, it is

important that you ask your doctor about this so that you will know what to

expect.

Q. How can a Lyme patient be certain that he/she is experiencing a Herx

reaction and not an allergic reaction?

A: This is very difficult. Herx reactions are very common during treatment

of

Lyme disease. It usually consists of fever, chills, sweats, joint and

muscle

pain and exacerbation of symptoms. It occurs in approximately 50% of

patients

in varying degrees of severity. However, this symptom complex is very

similar

to a type of allergic reaction that is antiboby dependent, called serum

sickness.

Originally serum sickness occured when large amounts of antiserum prepared

in

horses or rabbits were injected into patients to protect them from various

diseases particularly during the period from 1900-1940. But this reaction

is

also encountered with penicillin and other drugs. Typically it occurs 3

days

to 3 weeks after injection and the patient experiences fever, enlarged lymph

nodes and spleen, and painful joints. Since a large amount of antigen or

foreign substance is injected, there is still a considerable amount of

antigen

available once antibody production begins. This excess of free antigen is

able

to bind to newly formed antibodies and form Ag-Ab complexes. In turn these

complexes bind a substance found in the blood called complement and attract

polymorphonuclear leukocytes (white blood cells). Lysosomal (digestive)

enzymes are released which cause tissue damage with destructive inflammation

of

small blood vessels (vasculitis). Free complement in the blood is depressed

at

the height of the reaction. This can be detected by a blood test. Once the

complexes are destroyed, free antibodies appear and symptoms abate. But if

the

offending substance continues to be administered, the vasculitis will result

in

chronic inflammmation.

Since the Herxheimer reaction seen in Lyme disease also involves a reaction

to

a foreign substance (either one released by the organism once it is killed

or

an endotoxin), it is important to carefully monitor the patient once the

reaction begins. Also, since the reaction is fueled by excess antigen it

can

be controlled by decreasing the amount of antibiotic that is used. This in

turn decreases the amount of antigen or toxin. If it is determined that

this

is not a detrimental situation it is important not to stop therapy. It can

be

altered as described above but not stopped. Once the patient has safely

passed

through this period he or she often experiences a lessening of symptoms

since

reaction is often elicited in response to spirochetal demise.” >>

Marta

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

>

>Dear Friends: It's been a week since I've been on Rocephin IV, and

>today I have started to shake, and get chills, and my left eye is

>blurry/foggy. Is this herxing? I feel like a Mack Truck ran over me!!

>

>Lovette

[Guest guest]

Dear Sandy: My prayers are with you! They discovered the EM in late

August, and placed me on 200 mg of oral doxycycline/day for 6 weeks.

Then, they increased that [at my request] to 400 mg/day. I felt almost

terrific for 1 week immediately upon increasing the dosage, but then I

took a nosedive and was back to the incredible fatigue and

photophobia. I have neurological symptoms, so they put me on IV

Rocephin. I have been on it 8 days, and for the first 7 I had no

symptoms other than being tired.

Good luck!

Lovette

[Guest guest]

Hi

was wondering if Herx are experienced all day for days, weeks etc. that one

is going thru one

thank you

[Guest guest]

In a message dated 4/25/99 10:41:50 PM Central Daylight Time, Memyo@...

writes:

<< Hi

was wondering if Herx are experienced all day for days, weeks etc. that one

is going thru one

thank you >>

I know I have been on 400mg Doxy and 1000mg Levaquin daily for two weeks now

and I feel worse every day. Of course, I feel bad all the time anyway so

sometimes it is hard to tell if it is a herx or a normal day My symptoms

include upset stomach, stomach gas, hot and cold chills, increase fatigue,

and even worse sleep patterns (if that is even possible).

I know this is the worst I have felt in about three years. I have moved

recently, which has taken a lot out of me, but this truly sucks.

[Guest guest]

In a message dated 4/27/99 12:56:00 AM Eastern Daylight Time,

Golfdawg@... writes:

> From: Golfdawg@...

>

> In a message dated 4/25/99 10:41:50 PM Central Daylight Time,

Memyo@...

> writes:

>

> << Hi

> was wondering if Herx are experienced all day for days, weeks etc. that

one

>

> is going thru one

> thank you >>

>

> I know I have been on 400mg Doxy and 1000mg Levaquin daily for two weeks

now

>

> and I feel worse every day. Of course, I feel bad all the time anyway so

> sometimes it is hard to tell if it is a herx or a normal day My

symptoms

>

> include upset stomach, stomach gas, hot and cold chills, increase fatigue,

> and even worse sleep patterns (if that is even possible).

>

> I know this is the worst I have felt in about three years. I have moved

> recently, which has taken a lot out of me, but this truly sucks.

>

I'm sure the move has something to do with feeling worse but it is hard to

tell if it is a herx or something else

thank you for your reply

lea

[Guest guest]

Hi Jill,

If any consolation, two weeks after I finished my round of 6 weeks of IV,

I felt terrific! If I could do cartwheels, I would have. The bad news, was

it only lasted two weeks, but.....every case is different, don't despair,

you may have caught your bug sooner, or have a different strain.

Hugs,

Marta

>From: jill schwartz <jilljb@...>

>

>Dear ,

>Sorry to hear you're having such a tough herx. I'm in my 5th week of IV

>roceph. and still feel like I'm in a herx or else I'm getting worse. I

>can't believe at times how weak and limp I can feel. And the mind games

>and other weird things continue. I never know minute to minute what is

>going to happen next. I can't wait for this to end.

> Any idea how long you can herx or when there is light at the end of

>the tunnel? Just a small sign would be nice.

>Hope you feel better soon.

>Jill

[Guest guest]

> To all, I saw my doc Saturday and we decided to give the 1000mg of

>Biaxin and 1000mg of Ceftin/ day another 6 weeks. & nbsp; This was based on

>my reporting of some improvement, especially at night. & nbsp; I have

>severe neurological problems, I can hardly walk, however about 9:00 p.m.

>my L leg starts to work much better. My question is, I have not changed

>meds but seem to be getting a Herx about 3-4 days after seeing the

>doc. & nbsp; Is this just coincidental with the growth cycle of the bug or

>physiological? & nbsp; Any one else had this experience? Larry

>(NV)Attachment converted: Macintosh HD:Larry J. Yenko.vcf (TEXT/BOBO)

>(000072D7)

Hi Larry,

What I notice is any stress, i.e. going to the doctor causes flare ups of

my symptoms. Although my symptoms occur within 24 hours of seeing the

doctor or getting the PICC line or ?

Kiana Rossi

mailto:bornfree@...

Northern California

[Guest guest]

In a message dated 9/24/99 10:51:12 AM Eastern Daylight Time, larryy@...

writes:

<< Anita,

As I have written before, I too am on Flagal and the herxs are the worst

I've ever experienced. If the degree of the herx >>

Larry Are you on Flagyl alone? B

[Guest guest]

Hi Vicki,

This is not a technical explanation as I am really very bad at them, my

doctor says you can herx off of abx, a herx come from the die-off of

spirochetes and you get sick from the toxins they release, they seem to run

in four week cycles, mine are near my period, and studies have shown that

this is a common occurrence with women who have LD. Here is an explanation

of a herx from an expert:

A Much More Detailed Explanation:

from Lyme Disease 1991-patient /physician perspective

Jarisch-Herxheimer Reaction

H. Katzel, M.D.

Dorland’s Illustrated medical Dictionary says this about the

Jarisch-Herxheimer Reaction: “An increase is syphilitic symptoms after

administration of antisyphillitic drugs.” Although it is an illustrated

dictionary, there is no illustration next to the words. I wonder what they

would put next to such a definition......I suppose if they were to

illustrate

the Jarisch-Herxheimer Reaction, they would have to put a patient with

syphilis

or, more recently, a Lyme borreliosis patient standing in fright with

extremities extended and large circles radiating from his eyes. We’re

talking

about one terrible feeling person.

From back in the 1960’s, Professor Harvey described the Herxheimer Reaction

as

an acute febrile reaction which may develope after treatment of late

syphilis

has begun. But Professor Harvey felt that this was a rare phenomena and

such

reactions were more common in patients with paresis, and he felt that they

might be associated with a trasient increase in agitation and confusion as

well

as with fever and convulsions. His suggestion was that small doses of

adrenal

corticosteroids such as 20 mg. prednisone per day usually prevent or

ameliorate the Herxheimer Reaction.

Events similar to this Herxheimer type Reaction have been described in other

disease states. I recently attended a medical conference where an

experienced

middle-aged man physician/pathologist descibed “crashing” and episodes of

death

after one dose of IV penicillin for children with meningoccoccemia. Whether

the death of these children was due to acute, fulminating

Waterhouse-Friderichsen syndrome or whether the deaths were due to a

Herxheimer-type Reaction to one dose of penicillin is still unclear. The

description of these events, which happened 40-50 years ago, is stilll vivid

in

the memories of these physicians. At times they were reluctant (but knew

they

had no choice) in giving the penicillin to these sick children who they knew

would die if not treated and who might die from another cause with

treatment.

The Herxheimer-type Reaction is somewhat different in Lyme....Because Lyme

is

caused by a spirochete, much of what we learn and think about Lyme

borreliosis

comes from our experience with syphilis. In the early stages of killing the

Lyme spirochete (Borrelia burgdorferi) with antibiotics this Hexheimer type

Reaction can be found if looked for. Apparently it comes at different

times.

With I.V. antibiotics it may be noted within days of treatment; with oral

antibiotics it may be noted within days to weeks of treatment. When these

antibiotics begin to destroy the Lyme spirochete, a toxin is given off

causing

either direct reations or indirect actions through stimulation of the immune

system. The symptoms can vary from systemic reactions such as a low blood

pressure, fever,chills and hives, to more specific symptoms such as increase

in

joint pain, headaches, rash or in general, a reversal or worsening of the

Lyme

symptom complex.

Jarisch-Hexheimer Reaction should be watched for when treating Lyme

borreliosis

patients, and the patient should be adequately warned about this phenomenom.

Mistaking the Herxheimer reaction for an allergic reaction to antibiotics or

serum sickness or some other catastrophe might lead to prematurely stopping

the antibiotics on the part of the physician on non-compliance in taking the

medications on the part of the patient. When starting antibiotics, one

expects

to feel better, not worse. But if warned that there may be a period where

symptoms recur or flare up during this reaction , better compliance can be

expected. Herxheimer reactions are at least ten times more common than

true

allergic reactions to antibiotics.

Steroids are not recommended at this time for Herxheimer Reaction in Lyme

patients. The best treatment is knowledge of the process so that panic

attacks, anxiety and worry do not occur. Benadryl, which is an

antihistamine,

can be used to lessen the symptoms, and sometimes changing the dose and/or

timing of the antibiotics is needed to make the reaction less symptomatic.

So next time you start antibiotics, ask your physician whether or not you

should expect a Herxheimer Reaction to occur. It may be a learning

experience

for both of you, I’m not aware of any deaths from Herxheimer Reaction in

treating Lyme borreliosis. So give me a Herxheimer Reaction over an

allergic

reaction any time.”

Hugs,

Marta NJ

---

>From: " Vicki Sapudar " <v.sapudar@...>

>

>Can anyone tell me whether or not your antibodies can produce the Herx

>reaction. Some of you mention having them periodically while you're

onmeds?

>I only know it from when I actually took meds several years ago when i

>previously wasn;t making antibodies, but as I've hit a relapse it feels

like

>(a very mild) Herx reaction. I don't know whether this means that my

>antibodies now are kicking in and trying to fight the dam infection or

>whether I'm just sick and feel sick. Roll on my doctors visit tomorrow - I

>feel like a junky waiting for tomorrow for a antibiotic " fix " .

>

>Thanks for any feedback..

>

>Vicki S

>

[Guest guest]

Ginger,

I have just gone through this with my dr. I went in with the symptom

checklist and some articles on diagnosing lyme, and told her that I thought

there was a good possiblility that I had lyme and wanted to be tested for

it. I'm susre I was thought of as a " wave maker " , but you know what? if we

don't advocate for ourselves, we will continue to be sick for a long time.

I have found that this is not a disease that 99% of drs. are going to pursue

making a diagnosis for.

A good book that was recommended to me and I have found to be invaluable is

Everything You Need to Know About Lyme Disease by

Vanderhoof-Forschner.

Good luck in approaching your doc. BTW, mine said that she would be willing

to speak to a dr who is lyme literate or refer me to one, maybe just because

she knew I wasn't going to give up on this.

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

The " herx' situation that many of you are describing sounds like what we call

'tumor lysis syndrome' that active cancer patients get during chemo and/or

radiation.  As the cancerous cells and tumors are killed, they produce a toxin

that the body must clear (picture pac man here)  and until so, the patient will

present with the same syndrome as the herx condition that I have been reading

about on this list.

I have seen cancer patiens become extremely ill during the tumor lysis time.

Some have required an acute hospitalization and massive amounts of steroids and

antiinflammatories in order to kick it.  Much of the cancer chemo/rad treatments

take this condition into consideration when treatments are begun, in order to

not kill off the tumors immediately and overwhelm the health of immune system of

the patients.

K.Fielding RN-BC BS CMSRN

" there are no coincidences'

Remember, Ginger did everything that Fred Astaire did, but backwards and

in high heels....

[Guest guest]

Actually, I also never herxed, now that I know what a herx means. I have

Reactive Arthritis. Within two weeks of going on doxycycline ( now I'm on

minocycline, because the doxy stopped working after 1 year), I started feeling

alive again and the pain was practically gone. It was like a miracle to me. I

don't think it's a big deal either way, whether you herx or don't herx. People's

systems are all different from each other.

Mona

rheumatic herx

rheumatic

Date: Saturday, January 31, 2009, 6:14 AM

The " herx' situation that many of you are describing sounds like what we call

'tumor lysis syndrome' that active cancer patients get during chemo and/or

radiation. As the cancerous cells and tumors are killed, they produce a toxin

that the body must clear (picture pac man here) and until so, the patient will

present with the same syndrome as the herx condition that I have been reading

about on this list.

I have seen cancer patiens become extremely ill during the tumor lysis time.

Some have required an acute hospitalization and massive amounts of steroids and

antiinflammatories in order to kick it. Much of the cancer chemo/rad treatments

take this condition into consideration when treatments are begun, in order to

not kill off the tumors immediately and overwhelm the health of immune system of

the patients.

K.Fielding RN-BC BS CMSRN

" there are no coincidences'

Remember, Ginger did everything that Fred Astaire did, but backwards

and in high heels....