What to expect when herxing?

[EmersonAilidh]

I start treatment in SEVEN DAYS. Can you even believe that? When I logged on here for the first time less than a year ago I had never seen a P.A.N.D.A.S. savvy specialist & didn't even know what Lyme was. Thank you all oh so very much. Especially LSS. <3

 

That being said... I've been dreading asking about herxing & have put it off as long as I possibly could. The only example I have is Mandy from Under Our Skin & she didn't exactly do too well. Does the severity of the herx depend on anything besides the dose of antibiotics? Like, how long you've been infected or what your symptoms are? Can anyone share herxing stories?

 

Also, what exactly should I tell my teachers? They've all been completely involved with everything that's happened this past year so it wouldn't be out of the blue. I was thinking about just sending an email (I've sent all of my teachers two so far. One at the beginning of each semester.) with a link to a good description of herxing & a little explanation. They all know that I'm beginning treatment, & if I end up being bad off I don't want them to be caught off guard. Any suggestions?

 

LAST THING, I SWEAR! This appointment also means finally getting the Letter of Documentation we need to get the ball rolling on my 504. Any P.A.N.D.A.S./Lyme kids presenting with fatigue/exhaustion/lethargy (in my case, Narcolepsy), muscle/joint pain (&/or Dystonia), attention problems, extreme emotional lability/OCD/other mental issues, GI problems, tics, & I-don't-even-know what else, have good accommodations? At this point it is mostly the Narcolepsy, Dystonia/joint problems, & mental stuff for me.

 

Please get back to me, & thank you!

[KeithandElizabeth]

Emerson:

 

Herxing can be really rough for some people. One idea I was thinking about while reading your post is for you to do a big detox this week in preparation for starting lyme treatment. You could do a cup of bentonite clay in the morning and then again at night everyday this week. Your LLMD will probably also incorporate detox formulas into your treatment plan.

 

You may want to read through the blog lymebytes by the author of Insights into Lyme Disease. She has battled lyme disease for years and gives many helpful detox hints as well as vital information about lyme and its coinfections.

 

You may notice a great improvement followed by very bad days. This will be a bumpy road, but keep envisioning the light at the end of the tunnel!

 

Post when you need support! We are here for you!

 

Elizabeth

Edited February 25, 2011 by KeithandElizabeth

[momofgirls]

Emerson,

I am really happy that you are getting ready to begin treatment. So next week is big for you. Please remember that yes you will herx but it is a sign that the treatment is working. It is scary at times but try to keep up with your detox. That will help. You have had lyme a long time right? So be prepared to go the long haul. It will be bumpy but over time you will see a better trend towards healing. During your appointment ask lots of questions about how to begin treatment...adding things slowly or in a certain order, especially the herbs in combination with antibiotics can knock a good punch. You may want to go slow and if things are going well then you can guage and add more with time. Bring notes with your questions written out because I find that once I am there, I always forget stuff. Writing them down will help.

Good luck with your trip. You are such an amazing girl. I read your post over on the PANDAS forum tonight too. You have so much to be proud of...now go get well.

Kim

[momaine]

I start treatment in SEVEN DAYS. Can you even believe that? When I logged on here for the first time less than a year ago I had never seen a P.A.N.D.A.S. savvy specialist & didn't even know what Lyme was. Thank you all oh so very much. Especially LSS. <3

 

That being said... I've been dreading asking about herxing & have put it off as long as I possibly could. The only example I have is Mandy from Under Our Skin & she didn't exactly do too well. Does the severity of the herx depend on anything besides the dose of antibiotics? Like, how long you've been infected or what your symptoms are? Can anyone share herxing stories?

 

Also, what exactly should I tell my teachers? They've all been completely involved with everything that's happened this past year so it wouldn't be out of the blue. I was thinking about just sending an email (I've sent all of my teachers two so far. One at the beginning of each semester.) with a link to a good description of herxing & a little explanation. They all know that I'm beginning treatment, & if I end up being bad off I don't want them to be caught off guard. Any suggestions?

 

LAST THING, I SWEAR! This appointment also means finally getting the Letter of Documentation we need to get the ball rolling on my 504. Any P.A.N.D.A.S./Lyme kids presenting with fatigue/exhaustion/lethargy (in my case, Narcolepsy), muscle/joint pain (&/or Dystonia), attention problems, extreme emotional lability/OCD/other mental issues, GI problems, tics, & I-don't-even-know what else, have good accommodations? At this point it is mostly the Narcolepsy, Dystonia/joint problems, & mental stuff for me.

 

Please get back to me, & thank you!

Congrats on finding the help you needed.

 

Herxing hasn't been too bad for my dd so far. She's a month into treatment. OCD was worse at times during first week but not horrible. She has had two lyme rashes that look pretty scary but didn't last long. Hang in there. It'll be worth it.

 

Best of luck to you!

[pixiesmommy]

I just want to say that Pixie is 2 weeks in and mostly exhausted, but nothing major happening with her yet. I start mine in 2 weeks myself, so we can all hold hands (online of course!) through this.

 

I will dig out Pixie's 504, but honestly I think we are going to keep her home. Is there an option for homebound where a tutor comes and gives you your homework? I did that for a year in hs when I had mono and was too weak to even lift a book. It sucked royally and I had to fight the district to get it, but it was SUCH a relief.

 

Hugs,

Manda

[Suzan]

Herxing has been bareable for us, for the most part. Our LLMD has us start everything slowly. We don't start out with the full dose for zithromax or paquinil or questran and work up slowly. I don't know what meds your on, I hope you come share with us what your protocol will be.

 

For herxing, we LOVE the heating pad and our FAR Infrared Sauna. The heat really helps. Also, motrin and benadryl, epsom salt baths and plenty of rest. Most of my herxing only lasts a few days although my treatment brought out a buzzing/vibrating in my shoulder blade that rarely goes away.

 

I have a 504 plan for my girls but I don't think it will be useful for you. It just gives them accomodations for homework and testing and being out sick.

 

I am very excited for you to start your treatment. Hang in there and know that things will get better!

 

Susan

[Fixit]

Let me lead by asking for any info on a 504...please pm me..because ds does well...and they know he has the capability...they are still fighting me when things are obviously tought for him...

 

Em..just to give you another side, incase you haven't read some of my posts...ds was approximately at a 2 on the tic scale prior to startign lymes...

he quickly ramped to a 7, including some impulsivity and add/adhd issues...its been 3 going on 4 weeks and we are still at 7.

idk if this is a true herx...or yeast/c.diff. as screeches have always correlated with the latter....i did OATS test last week and waiting to see if its a gut issue or herx...most of me thinks it is gut...part of me wants his results to be normal so all the lymies here can say i told you so... ....but then i am scared no matter what the answer is because this is mentally and physically challenging and exhausting for him...and i don't know how long he will have to endure this.

 

he stayed home last friday..as the tics were too much and of cours he tries and has to suppress...because if he screamed all day like he does at home...they would send him home(and he loves school)...

yesterday..he came home and slept for almost 2 hours and then went to bed at 9pm...he NEVER naps and will be 11 soon

 

i am not posting this to scare anyone...it is information..information is power...and once he makes it out the other side of what ever the H&^% is going on...we will have another protocoal to hopefully help more children..

 

lastely i did feel as though i was really maintaining his gut..he was already close to 200bllion probis a day and detxoing before starting "lymes" treatment...

but if you start off with an already, irregular system, it is easier to mess up than someone with a better digetive track..

 

ie...if you have a metal rod...it is strong and true...if it gets bent..and you straighten it out...it is never as true as one that has never been bent...it will always have that weak spot

[smartyjones]

ie...if you have a metal rod...it is strong and true...if it gets bent..and you straighten it out...it is never as true as one that has never been bent...it will always have that weak spot

 

 

but. . . when you break a bone, they say you will never break it again in that spot. it heals stronger than it was when complete. there will always be a mark there and you can see it on an x-ray but it will be stronger for the break. it's all perspective. . . .

[LNN]

Maybe we are the exception and I hope I don't jinx myself, but herxing has not really been an issue for us. If we've had herxing, it's been in a 4 week cycle and it consists of a few days of angry/edginess and an increase in muscle pain. But DS is still miles ahead of where he was pre-lyme treatment. It's nothing like the people in Under Our Skin. For us, it's been mostly goodness and a mild case of days where DS feels a little worse. But really no biggie.

 

I would focus on detox and taking care of yourself. You can also talk to the doc about the timing of your PSATs and maybe build a treatment plan that helps you feel best close to testing time, then spend the summer being more aggressive. I think you have options. You aren't doomed to feel worse before you're allowed to feel better.

[Fixit]

ie...if you have a metal rod...it is strong and true...if it gets bent..and you straighten it out...it is never as true as one that has never been bent...it will always have that weak spot

 

 

but. . . when you break a bone, they say you will never break it again in that spot. it heals stronger than it was when complete. there will always be a mark there and you can see it on an x-ray but it will be stronger for the break. it's all perspective. . . .

 

i like your answer better!!!!

[JuliaFaith]

So glad to hear you are starting treatment!

 

On the herxing issue, my ds13 has had 3 flares just in the last month which lasted 1-3 hrs. each. They happened around midnight for some reason. He is on his 3rd month of treatment. For flares, his dr. recommends epsom salt bath, ibuprophon (sp), and benedryl (for itching/rashes). Last time we acted quickly on bath & ibu and it last 1 hour instead of 2.

 

His energy seems much better but other symptoms are the same (flu-like). His Dr. just recommended he get his tonsils removed since his improvement has been slow. She also recommend Cranial Sacral Therapy (sp).

 

Just having a plan, in case you have a flare, is very helpful.

 

Detoxing is a great way to get ready for treatment as well. Will PM you an article on this.

 

Take care and keep us posted.

[JuliaFaith]

Tried to send you a second PM and it looks like your mailbox is full.

[EmersonAilidh]

Cleaned my inbox out! sorry. D: As you could probably guess, it was well overdue, haha. I'll reply to your message later, promise! Need to go eat after replying to this.

 

I think I'm going to wait until we see the doctor to a detox, but I definitely will do one. I just don't want to go with one that he doesn't like or something, & then have to do another one. Plus, I doubt my Mom would go for the idea before a doctor suggested it.

 

LLM ~ Great idea about the PSAT! I know mine is in October, & it's also the NMSQT so it's super important. I'll be sure to bring that up. Thank you. I probably never would have thought of that.

 

SmartyJones ~ I like that answer better too!

 

FixIt ~ Hope you make progress with his gut! & don't worry. You're not scaring anyone. I'm preparing for the worst.

 

Suzan ~ I think I'd be okay with a little shoulder buzzing! & sauna's sound expensive... I have a giant electric blanket though! Thing works miracles for shoulder pain on bad days.

 

PixiesMommy ~ From what I can tell, our school district is pretty strict with home-bound. I say this because my counselor could think of only one student who's gotten it before, & she had stomach cancer. I'd be more than willing to try, though! But I'd like to see if going to school is at least an option first.

 

MomOfGirls ~ At least five years, which sure seems long to me! Haha. I'm ready. At least, I hope I am! Haha.

 

Keith&Elizabeth ~ I love LymeBytes! & like I said up there, I'm going to wait on the detox but I am definitely going to do one. Thank you for all of your help with this.

[cobbiemommy]

Water, at least 65-80 ounces of water per day. That is one of the biggest factors in keeping your liver and kidneys flushed out. Sleep when you need it. Exercise very mildly, but if you go to school all day, the walking would qualify as enough exercise. Son's IEP is set up so that he can leave school when he is tired or the anxiety is getting to him. Also, we keep a second set of books at home for him and had he had to be exempted from P.E. because of his vasculitis and thickened blood.

 

Good luck.

[smartyjones]

he had to be exempted from P.E. because of his vasculitis and thickened blood.

 

Good luck.

 

 

cobbie -- what do you mean thickened blood?