I know that the herx is very individual. It is often the sign that treatment is working.

However, like many people, I work and have made certain plans into the future, like vacation.

Can I take a quick poll of those who herxed--

1. Did you herx on:

a)Abx
b)flagyl
c)other LD treatment
d)all of the above
e)no herx on anything

2. Symptoms I had (check all that apply)

a) fatigue
b) chills, fever, or pre-flu-like feeling
c) increase in joint and muscle pains
d) migraines, headache
e) rash, skin manifestations
f) nausea, lack of appetite
g) vomiting
h) like the worst flu I had
i) you know the scene in the exorcist? That was me. I thought I was going to die.
j) Other:

3. While herxing, I was:

a) able to do work as usual despite some discomfort or fatigue
b) able to work at half-speed or less
c) unable to work at all
d) confined mostly to bed
e) completely debilitated and unable to eat, read, watch TV or talk on the phone.

4. Based on how I felt at the time of my herx, I would have not been able to:

a) take a non-refundable vacation to Hawaii
b) attend the wedding of my son or daughter
c) run for cover in a 7.0 earthquake, tornado, or hurricane

5. How long was your herx?
a) 1 - 6 days
b) 1-2 weeks
c) several weeks
d) month or more
e) 0 days; no herx

I'm sorry..I couldn't begin to answer all those questions..

It will be an interesting poll, though..

My guess is that you will see a different answer for each individual on each treatment protocol, at each stage in the game for them.

We are three here at home with Lyme...all different..every question yes and no..

I was going to start a Herx thread myself...but for the philosophies posted on the Flagyl thread re: Herxing and it's benefits..(or that there was no benefit)

But again, I think that is highly individualized. Both my son and daughter (my son more so) went through a Herx period...and their Dr.J wanted them to stay on abx and ride it. It was bad...but not go to the ER bad..

Once they got to the other side...both were leagues better than when they started.

I also experienced that on IV. A big bad Herx in the beginning...and on Mepron (which improved my Babs greatly after staying on through the Herx)

We three are seeing docs that find true Herxs beneficial...but of course monitor closely and do not condone doing damage to yourself.

I am editing here...I will post our experiences to help give an idea of ewhat I'm trying to say..that may help.

PLEASE NOTE THAT THIS IS OUR EXPERIENCE..based on what we've lived through..and on working with the specialists we see, and their philosophies..the meds they use...each of us need to do that following our own docs orders.

The kids Herx's were very beneficial. They were "true" Herxs, and by that I mean...an intensification of Lyme symptoms due to the toxins released into the body when the Bb die...when that happens, it does make you feel worse.

It is very important to detox...so you give the bad stuff a way out..or it can just circle back around and cause more trouble. (this a bit more so in adults than kids)

We have had experience with my son and myself..where severe symptoms were not a Herx..but rather a bad/allergic reaction to the med. That must be carefully monitored..and you need your doc to help you sort that out.

ie: my son had heart palpitations (which for some can be part of Herxing) but for him..it was an allergic reaction to Paxil...he needed to be taken off immediately and switched to a milder anti-D. Doc J helped us figure that out.

His Herx reaction, at the same time, with neuro-symptoms, got real bad...but we were in contact with Doc..he thought he should stay on the high dose of meds prescribed for him at that time. He got through it..and it cleared ALOT of the neuro stuff once he was over it. He stayed on meds...I am glad he did.

After it was over...he had completely erradicated Obsessive-Compulsive Disorder...rage outbursts..and a raging, spiraling Anorexia. He is till Herxing since then periodically...but those initial severe symptoms were wiped out in his case, on those meds, at that time.

This also depends highly on what med...where you are in the illness, ect., ect.

If you are staying on the same med, and benefiting, it also helps to keep track of the timing of Herxs. For instance, my daughter is the only one of us who has been on one abx the whole time. She follows a clear cut every three week Herx scheduale. She has stayed the course with the abx the whole time. Her Herxs are in sinc with the replication of Bb every 3-4 weeks. Each one is lighter than the last. My son and especially my case are much more complicated to figure out.

My son has that going on now, too...but we did have to change abx to treat Bartonella as well, and upon doing that...he had a Bart Herx immediately. We rode that one out. In this case, it was beneficial. (again...in touch with Doc re: symptoms)

I was on high dose orals for 5 months. I had no Herx...but symptoms got SLOWLY worse...as it turns out...those orals were not effective for me at that time. What I found was that they were not addressing the infection significantly...I was put on IV (I have heavy neuro). Almost immediately...I was knocked out with an extreme intensification of symptoms. Nothing like before.

I stayed in touch with Doc...made sure no allergy...stayed with it...and after a few weeks...I plateaued. Then, now, I feel a shift in my neuro symptoms for the first time. Not a miraculous turn around...but a definate shift.

I will stay on this therapy until it stops working...and now I am to add yet another abx. My Babesia has improved greatly over a long haul with Mepron and Zith...Herxed in the beginning on that.

Also...at one point on the orals..I had a rash. We carefully got off meds to see what it was. It was unrelated...but I'm glad we stopped to see. I noted that when I went off meds...my symptoms got ALOT worse. Therefore, for me, they were needed...just not working very efficiently..but definately holding symptoms at bay.

SOOOO..I think it is highly individualized...you need to pay close attention to what's going on in your body..and you need to work closely with your Doc...and it also depends on what meds they use.

I believe a true Herx can have great benefit. I believe detox is crutial. I believe you must always be ready to decern any allergic reaction as that is bad. I also don't think anyone should Herx to where it is intolerable or too extreme...you do have to be careful, and sometimes backing off may be warranted if Doc thinks so.

To answer your concerns about going on vacation..hmmm.

I don't see how you could know...if it isn't planned yet...I might put it off till you see how you respond...if it is planned...then I'd say you have to follow along and be really in tune with your body day to day...and make your best judgement call..

I really think it is something you should also consider talking to your Doc about. Traveling...and/or Herxing..

OH...and I love your doggie!!

Mo

Your poll looks like it will be very interesting indeed. I personally feel it would be difficult for me to answer as I am on a cocktail of Biaxin and Tinidazole (like Flaygl but easier on the body). The Biaxin gives me a herx every 28 days and the Tinidazole has me herxing non-stop between the 28 days with some days being harder than others.

So you can see that what's already been said about individuality really applies to me as well.

I have a friend that I got to go and see my LLMD who has started her abx and her herx (day 4 now) that she is now undergoing is totally different from mine yet we both have LD. Prior to treatment we had many similar symptoms but we weren't identical. She has symptoms that I don't and vice versa. She is also on different abx than I am.

I have another friend who will be seeing my specialist today and she needed my help in assembling her medical history as she just can't do it. Her symptoms are way more than mine in the number of them, plus her symptoms are much worse than mine as I believe she was born with LD a long time ago. Again, we have symptoms that are also different.

There's also the issue of co-infections. presently I don't know which ones I have (Still waiting for test results) and same for my friends.

Globally there are over 300 strains of Bb alone, each person's ammunity is different plus I'm sure that in any given combination of the co-infections there are also different strains as well.

Then when you factor in all the different possiblities of medication combinations on top of all of this, you have more confusion than you'd expect.

What I'm saying is that you might find the results to your poll difficult to analyze as a result of all the different factors mentioned, but I would really like to see your results as the idea is interesting to me.

Maybe we need more polls on all of the different topics of LD where we could start making connections? Just a thought here.

I have not yet been officially re-diagnosed, as I'm waiting for another LLMD visit later this month.

I have been wondering the same things about herxing... IF I end up getting treated... whether I will herx and whether my ability to work will be affected (I teach).

I realize that there's probably no way to know the answers to these questions, but hearing other people's experience helps in preparation...

So I'm very glad you've posted this. The responses you've gotten so far have been very helpful! (Thanks Mo and Cave76 for sharing).

Also, although I do realize the seriousness of your poll, the wording of this made me giggle:

"4. Based on how I felt at the time of my herx, I would have not been able to:

a) take a non-refundable vacation to Hawaii
b) attend the wedding of my son or daughter
c) run for cover in a 7.0 earthquake, tornado, or hurricane"

Maybe I should have simplified my question to this:

Can you WORK when your HERX?

I am in a business that has me scheduled into the next year, and many of these appts are events that depend on my being there, or else the entire event is cancelled and at great expense and headache to others.

Hey, if I can't work, I can't work. I do feel I should try to do the responsible thing and either try to time my herxes, if possible, or let folks know I have to cancel well ahead of the disaster point.

I have taken small amounts of antibiotics for other infections, and by the third day, I feel tired and flu-ish. Don't know if that was a herx. I preferred to stay in bed or rest, but if needed, I could have worked a reduced schedule.

I am due to get a diagnosis soon and will see if I will be put on Abx.

Thanks for all the insights on herxing. If you could, could you please describe what herxing includes for you -- the type of discomfort you experience?

As far as answering the question Can you work during a herx?, well, many, many of us have found that working with Lyme Disease is not possible.

So, for that large group of people who post here and can't work because of LD, muchless a herx reaction, wouldn't be working anyway.

I see the LLMD who advacates that Herxing, and continue to herx to severity, is detrimental to a good recovery. Thus, through his experience, he has his patients go off all abx at the FIRST SIGN of a Herx.

The turtle wins the race!!! Always has, and always will.

A Herxheimer reaction is when your lyme symptoms are exaggerated or you have new Lyme symptoms you had not experienced before abx. Nothing more, nothing less.

During my first treatment with abx every pain disappeared completely. At the end of that 3 wk treatment all the pains began to show up again.

I went on a higher dosage and the symptoms (aches/pains) got worse, but I was still functional. Four weeks later the aches/pains began to lessen and brain fog showed slight improvement. I'm guessing that initial 4 weeks was herxing.

Right now the brain fog is getting bad again. I hate it when that happens!

a)Abx
b)flagyl
c)other LD treatment
d)all of the above
e)no herx on anything

A and B

2. Symptoms I had (check all that apply)

a) fatigue
b) chills, fever, or pre-flu-like feeling
c) increase in joint and muscle pains
d) migraines, headache
e) rash, skin manifestations
f) nausea, lack of appetite
g) vomiting
h) like the worst flu I had
i) you know the scene in the exorcist? That was me. I thought I was going to die.
j) Other:

A,B,F,J (I get this poke in the eye symptom, fogginess, ringing in my ears)

3. While herxing, I was:

a) able to do work as usual despite some discomfort or fatigue
b) able to work at half-speed or less
c) unable to work at all
d) confined mostly to bed
e) completely debilitated and unable to eat, read, watch TV or talk on the phone.

Between D and E. I tried talking on the phone for a very short time. I had to cut the coversation short.

4. Based on how I felt at the time of my herx, I would have not been able to:

a) take a non-refundable vacation to Hawaii
b) attend the wedding of my son or daughter
c) run for cover in a 7.0 earthquake, tornado, or hurricane

What tornado! HA.

I would have probably dragged myself to Hawaii and then wondered why.

I was going to drag myself to my daughters baby shower, but I needed someone to drive me. I didn't have anyone to do that.

Note: This was even before I started the abx. This thing cycles for me.

5. How long was your herx?
a) 1 - 6 days
b) 1-2 weeks
c) several weeks
d) month or more
e) 0 days; no herx

3 days. I have only had one herx since I started the abx. My symptoms just increased. It was a lot like when this first started for me.

I hope this helps. I wondered what all the herxing was about myself. I finally just figured I would know when it happened. Oh so true.

It is hard to take a drug that makes you feel worse. It is good that we have this sight to let us know that this too shall pass and we are on the right track. Right?

The jury is still out for me. I figure time will tell.

a)Abx (((( YES, doxy))))))
b)flagyl
c)other LD treatment
d)all of the above
e)no herx on anything

2. Symptoms I had (check all that apply)

a) fatigue (((((((YES))))))))))))
b) chills, fever, or pre-flu-like feeling (((((((((((YES)))))))
c) increase in joint and muscle pains(((((YES)))))
d) migraines, headache
e) rash, skin manifestations(((((YES))))))
f) lack of appetite ((((((((YES)))))))
g) vomiting
h) like the worst flu I had ((((((((((YES)))))
i) you know the scene in the exorcist? That was me. I thought I was going to die. (((((((YES,YES,YES,))))))))))))))
j) Other:

3. While herxing, I was:

a) able to do work as usual despite some discomfort or fatigue
b) able to work at half-speed or less

c) unable to work at all (((((((((((((YES))))))))))

d) confined mostly to bed ((((YES)))))))

e) completely debilitated and unable to eat, read, watch TV or talk on the phone.((((((((YES))))))))))))))

4. Based on how I felt at the time of my herx, I would have not been able to:

a) take a non-refundable vacation to Hawaii
b) attend the wedding of my son or daughter
c) run for cover in a 7.0 earthquake, tornado, or hurricane
((((((((((((YES TO ALL ABOVE))))))))))

5. How long was your herx?
a) 1 - 6 days
b) 1-2 weeks
c) several weeks
d) month or more ((((((((((((YES))))))))
e) 0 days; no herx

a)Abx - YES
b)flagyl (TINIDAZOLE - EQUIVOLENT) YES
c)other LD treatment - YES
d)all of the above
e)no herx on anything

2. Symptoms I had (check all that apply)

a) fatigue - YES
b) chills, fever, or pre-flu-like feeling - YES
c) increase in joint and muscle pains -BIG TIME
d) migraines, headache - OH YES
e) rash, skin manifestations - NO
f) nausea, lack of appetite - A LITTLE
g) vomiting - NO
h) like the worst flu I had - YES
i) you know the scene in the exorcist? That was me. I thought I was going to die. - PRETTY CLOSE
j) Other: EXTREMELY HYPERSENSITIVE TO MY SURROUNDINGS

3. While herxing, I was:

a) able to do work as usual despite some discomfort or fatigue - YEAH RIGHT.....NOT!!
b) able to work at half-speed or less - NOT A HOPE IN H*DOUBLE L
c) unable to work at all - YOU GOT IT.
d) confined mostly to bed - PRETTY MUCH, COUCH DURING THE DAY FOR LITTLE BITS OF TIME.
e) completely debilitated and unable to eat, read, watch TV or talk on the phone.

I COULD WATCH SIMPLE SHOWS, FORGET READING OR THE PHONE AS MY BRAIN FOG WAS AT A PEEK AND I MADE MYSELF EAT.

4. Based on how I felt at the time of my herx, I would have not been able to:

a) take a non-refundable vacation to Hawaii
NO, BUT I'D TRY ANYWAY.
b) attend the wedding of my son or daughter
ONLY IF I COULD LAY DOWN THERE
c) run for cover in a 7.0 earthquake,
tornado, or hurricane
DON'T EXPECT MUCH MORE THAN .25 MILES PER HOUR OUT OF ME.

5. How long was your herx?
a) 1 - 6 days
b) 1-2 weeks
c) several weeks
d) month or more
e) 0 days; no herx

a)Abx
b)flagyl
c)other LD treatment
d)all of the above
e)no herx on anything

Answer I herxed on Doxy, Biaxin, Plaquenil and Minocycline. Mino was the worst...

2. Symptoms I had (check all that apply)

a) fatigue
b) chills, fever, or pre-flu-like feeling
c) increase in joint and muscle pains
d) migraines, headache
e) rash, skin manifestations
f) nausea, lack of appetite
g) vomiting
h) like the worst flu I had
i) you know the scene in the exorcist? That was me. I thought I was going to die.
j) Other:

Answer A B C D F G H

3. While herxing, I was:

a) able to do work as usual despite some discomfort or fatigue
b) able to work at half-speed or less
c) unable to work at all
d) confined mostly to bed
e) completely debilitated and unable to eat, read, watch TV or talk on the phone.

Answer

Doxy : b
Biaxin & Plaquenil: c
Minocycline: e

4. Based on how I felt at the time of my herx, I would have not been able to:

a) take a non-refundable vacation to Hawaii
b) attend the wedding of my son or daughter
c) run for cover in a 7.0 earthquake, tornado, or hurricane

Answer

Doxy, Biaxin, Plaq: I could have done all of these if I had too

Minocycline: I would have had to have a wheelchair and someone to help me get there, but I would have done all three as well

5. How long was your herx?
a) 1 - 6 days
b) 1-2 weeks
c) several weeks
d) month or more
e) 0 days; no herx

Answer

Doxy, Biaxin & Plaq : a

Minocycline: c ( and still going off and on )

Great Poll!!

1) Flagyl is an antibiotic, yes, I herxed on it and all other ABX I have taken.

2) all of the above except migraines, plus nasty NMH blood pressure and tachycardia flares, swelling, flushing, anxiety, confusion, depression, shaking, hot flashes, burning skin etc.

3)D & E

4) A & B, and unless I was unhooked from my IV bag & pole, i coudl escape the Earthquake or tornado in a car.

5)Some herxes of mine have been a week or more, some have been 3-4 days, and the real nasty ones were months after months of herxing from IV, Hyperbaric & Flagyl.

You should have included a "could you have sex?" question just for laughs! He hee

2. fatique, increase in joint and muscle pains, migraines and headaches, increased dizziness, return of tingling in right leg.

3. I was able to work despite fatique and discomfort.

4. I would have been able to do all three.

5. Herx's lasted 3-4 days.

My LLMD said "to not fear flagyl, but respect it."

I was really nervous about going to flagyl but it really hasn't been that bad for me. I know that I am going to have good and bad days. But the bad ones are getting better!!

1. Did you herx on:

a)Abx (((YES)))
b)flagyl (((not been on this yet)))
c)other LD treatment ((( Co infection meds- clindamycin/quinine)))
d)all of the above ((YES)))
e)no herx on anything

2. Symptoms I had (check all that apply)

a) fatigue ((((OH YEAH, only in beginning though of treatment))))
b) chills, fever, or pre-flu-like feeling (((YES)))
c) increase in joint and muscle pains ((( YES, but not alot- didnt have many of those to begin with))))
d) migraines, headache (((Like you wouldnt believe)))))
e) rash, skin manifestations((((YES))))
f) nausea, lack of appetite ((((kinda)))
g) vomiting ((((never)))
h) like the worst flu I had (((YES))))
i) you know the scene in the exorcist? That was me. I thought I was going to die. ((( I can relate)))
j) Other: vertigo, extreme pressure in head, rage, severe aggrivation, being extremely downright rude and insensitive and not caring, nightmares, SLEEP APNEA- this is fun!

3. While herxing, I was:

a) able to do work as usual despite some discomfort or fatigue
b) able to work at half-speed or less ((((YES))))
c) unable to work at all ((( this happens to-ive had to call off usually on the first day or two of bad herx til meds clear))))
d) confined mostly to bed ((Yes- on the days I have to call off work, and always on weekends)))
e) completely debilitated and unable to eat, read, watch TV or talk on the phone.

4. Based on how I felt at the time of my herx, I would have not been able to:

a) take a non-refundable vacation to Hawaii (((heck no- I've had my parasites for the day )
b) attend the wedding of my son or daughter (((( well, if Destiny sprung a hottie at the age of 5, I might make it there )
c) run for cover in a 7.0 earthquake, tornado, or hurricane (((RUN, can lymed persons do this? Ok, I ran once- and paid for it for two weeks )

5. How long was your herx?
a) 1 - 6 days
b) 1-2 weeks (((always)))
c) several weeks
d) month or more (((This happened on babesia meds- I was NOT happy LOL))))
e) 0 days; no herx

[/B][/QUOTE]

I gather the purpose of your survey is to help you figure out how to plan your life in the near future? Veerrry tricky business.

From my experience, I can tell you for the first four to six months of big time treatment (no iv, just orals) my big accomplishment each day was to bathe my body and put clothes on. Period! And feed the cat. Period!!

I suppose if we had an earthquake I could have mustered up enough adrenaline to get get outside and collapse.

But I'm 66 years old so I suppose that should be factored into the equation. Heck...after 8 months if I planned to lunch with dear friends~for say, next Tuesday..I would invariably have to cancel.

My vote for you would be to advise you not to fill up your calendar. Make this time a time for healing....just for you....with no obligations and no committments. You will find that herxing takes a big toll...and doing anything the least bit intellectually
or physically draining will put you out of commission for days.

Just my advice. You have to experience the "herx from H**" to really understand.
This disease takes a whopping dose of patience and fortitude, and definitely ain't for sissies!!

My best,
nan

quote:

---

Originally posted by Poochini:

1. Did you herx on:

a)Abx (Tetracycline but not Ceftin or Biaxin)
b)flagyl
c)other LD treatment
d)all of the above
e)no herx on anything

2. Symptoms I had (check all that apply)

a) fatigue (YES but this occurs even when I just overextend myself)
b) chills, fever, or pre-flu-like feeling (yes, fever every day while on Tetracycline)
c) increase in joint and muscle pains (yes, actually swollen joints for 1st time and sciatica)
d) migraines, headache (yes)
e) rash, skin manifestations (no)
f) nausea, lack of appetite (yes, nausea and increased appetite prior to)
g) vomiting (no)
h) like the worst flu I had (only when 1st bitten)
i) you know the scene in the exorcist? That was me. I thought I was going to die. (yes, have thought I was going to die mainly from fatigue and heart pounding hard)
j) Other: (yes, acid reflux, stick poking eye feeling, shooting pains, difficulty walking/bending, short tempered, muscle cramping, burning eyes, confusion and speaking problems)

3. While herxing, I was:

a) able to do work as usual despite some discomfort or fatigue (no)
b) able to work at half-speed or less (yes)
c) unable to work at all (yes, a day here and there)
d) confined mostly to bed (on weekends)
e) completely debilitated and unable to eat, read, watch TV or talk on the phone. (talking on the phone is the first to go, eating can be troublesome, TV's always on but I may be asleep, reading just became possible again with new bifocal rx)

4. Based on how I felt at the time of my herx, I would have not been able to:

a) take a non-refundable vacation to Hawaii (yes, able-I would stop abx prior to leaving to ensure no herx on trip)
b) attend the wedding of my son or daughter (same as above)
c) run for cover in a 7.0 earthquake, tornado, or hurricane (yes, able)

5. How long was your herx?
a) 1 - 6 days (no)
b) 1-2 weeks (yes, again, I stop abx for a few days when it's too bad)
c) several weeks (no)
d) month or more (no)
e) 0 days; no herx (no)

---

if I live thru this, I'll let you know.

T

YES TO ALL OF THESE:
a)Abx- YES (Biaxin, Spectracef, Ominicef, Levaquin, Amoxicillin, Avelox, Vantin, Doxy)
b)flagyl- YES (did I ever!!!)
c)other LD treatment- YES (Zithromax/Mepron)

2. Symptoms I had (check all that apply)

YES TO ALL OF THESE:
a) fatigue
b) chills, fever, or pre-flu-like feeling
c) increase in joint and muscle pains
d) migraines, headache
e) rash, skin manifestations
f) nausea, lack of appetite
h) like the worst flu I had
i) you know the scene in the exorcist? That was me. I thought I was going to die.
j) Other: INSANITY??? Allergies worsened.

3. While herxing, I was:

YES TO ALL OF THESE:
b) able to work at half-speed or less (at my current job which is Lyme friendly)
c) unable to work at all (I left my other job on Day #1 of my herx and never went back)
d) confined mostly to bed (a large majority of my herxs)
e) completely debilitated and unable to eat, read, watch TV or talk on the phone. (many of my herxs, especially my early ones, and any herx that worked on my neuro-LYME)

4. Based on how I felt at the time of my herx, I would have not been able to:

a) take a non-refundable vacation to Hawaii
b) attend the wedding of my son or daughter
c) run for cover in a 7.0 earthquake, tornado, or hurricane

** I started my treatment the day after I came home from my honeymoon to Italy. I do not remember 80% of my wedding I was already so sick. When I started that first herx, I was the sickest I had ever been in my life and absolutely could not move.

If you have something big coming up, talk to your LLMD about it and maybe wait a little while (like a wedding)?

I saw my LLMD a month before my wedding, and we decided to wait until after it to start treatment.

Then don't plan anything else at all. You won't want any stress or obligations coming up. If you don't have such a bad reaction, then that will be great, but you'll be prepared!

5. How long was your herx?
a) 1 - 6 days (some)
b) 1-2 weeks (some)
c) several weeks (majority)
d) month or more (the first several were many months long)