Can someone describe "herxing"

[airial95]

Sorry in advance if this is a bit long...

 

My son was dx as Lyme on the standard Western Blot by Dr. B. (awaiting Igenex results for co-infections now.) With the lyme dx, he changed his abx to 500 mg Augmentin 2x/day and 250 mg Azith 1x/day (my son is 4, weighs about 37 lbs) Prior to the Lyme dx, he was on 800 mg of Augmentin 1x/day (I think). We do a dose of ibuprofen every AM, and again in the mid-afternoon as needed. Probiotics previously were always done through active culture yogurts and Good Belly juice - and that has worked wonderfully for us with no gut issues (even after 2+ years on various abx.) Side note - 2 weeks into the new abx regimen, my mild PANDAS daughter tested positive for strep. (4th day of school - gotta love it!)

 

Here's what we're seeing:

 

Week 1 - no problems, limited food anxiety but no worse than where we started at about 85-90% of normal (not currently in ERP therapy, but still using techniques).

 

Week 2 - started to see increased food OCD, and severe medicine refusal (After a 2 1/2 hour battle and missing our bus on the 3rd day of school and a frantic call to the pediatrician (couldn't get a hold of Dr. B's office) - pediatrician ended up writing us rx for both abx in suspension form so we had the option as needed to fight the refusal - have I mentioned lately how much I LOVE our ped?) It was Friday of this week that my daughter tested positive for strep - so I thought maybe the medicine refusal/increased OCD was related to exposure - he's always been sensitive.

 

Week 3 - started to complain of some tummyaches, and started to see (in his words - not mine) the "big stinky poops" - added Culturelle kids probiotics to our other sources in his daily water bottle for school. Was able to take his medicine better than the previous week - but not without some ritual, dancing around, etc... However, about 30-40% of the time, he was vomitting/gagging the medicine back up within minutes of taking it. Had a breakdown last Thursday when I asked if "Harvey" (his name for his OCD) was telling him he couldn't take his medicine - he shook his head no, but then collapsed into my arms in sobbing tears (those of a grief stricken adult, not of a 4 year old boy) - needless to say, broke my heart and meds got a bit off schedule that day... He also wet the bed 2x this week - which is his CLASSIC strep symptom.

 

Week 4 - this week - "stinky poops" are gone, no complaints of tummy aches, vomitted up medicine "only" 2x, and found a way to "beat Harvey" by racing daddy to take medicine (before daddy takes a shower, before he washes this cup...anything that he can beat daddy at. Should mention, Daddy has been travelling for work and is home this week) Slightly better with the food OCD, however now has started asking if what he is eating is "healthy", and fixating on making "healthy" food choices. Also has started "checking" to make sure the doors are locked in the car and house at night before he goes to bed (my car got broken into about a week and a half ago - smash and grab, stole my briefcase/laptop - started shortly after that.)

 

All of the symptoms he's exhibiting are his classic PANDAS symptoms - and with the exception of the medicine refusal/vomitting - are about 50% of the severity of what we're normally accustomed to. (the healthy food/checking thing is a "new" type of OCD for him - but his sypmtoms have always been primarily OCD and he throws a new one at us from time to time anyway.)

 

We have a follow up with Dr. B via phone on the 20th of September. We also got him back into Rothman for ERP starting on the 18th to try to help with the medicine refusal (it's been over a year and his old therapist left so they had to process him as a newbie again). We did go on a short long weekend vacation with 2 other families for the holiday and for the most part he was AWESOME! At medicine time, we battled the anxiety by letting him "show off" to the other kids and grown ups what a big boy he was taking his big boy pills. It seemed to give him strength over Harvey (unfortunately - with the audience went the strength!)

 

Other: We have seen some increased hyperactivity in the afternoons after school - but finally got to the bottom of it when the babysitter told us that she's been letting him choose his own snack after school with out her help - which almost always is something sugar laden (only reason we keep that stuff around is for bribe fodder at medicine times!) Once she started giving him options to choose from - hyperactivity subsided to more normal levels. Unfortunately - same solution doesn't work for his Abuelo who watches him 2 days a week after school - no telling grandpas they can't spoil their grandkids - no matter how much more work it makes for them!

 

Questions/Thoughts:

 

Could this be "herxing"?

Could it be a reaction to my daughter's strep? (She's still on azith for her infection and back to about 75% of baseline - with her handwriting and seperation anxiety lagging this time around).

The bedwetting is always our biggest tell for strep - is it possible on that dosage of abx that he has it - haven't taken him to the ped, but could get him in ASAP if I thought he should be tested.

 

Sorry about the length!

[Mayzoo]

Very sorry but short on time, I will read the whole post later when I get time, but here is an answer based on your title. Oh I read the last line: Yes, I would get him tested because he can have strep despite prophylactic abx. My kiddo has gotten it several times while on abx .

 

Very clinical and traditional description:

 

https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=161

 

Symptoms of Herxheimer reactions

IT unavoidably increases disease symptoms; some of them are subclinical.

 

The most common symptoms reported include increased fatigue, joint or muscle pain, skin rashes, photosensitivity, irritability, paresthesia, dizziness, sleep disturbances, asthenia, muscle cramps, night sweats, hypertension, hypotension, headaches (especially migraines) and swollen glands. Also reported are heavy perspiration, metallic taste in mouth, chills, nausea, bloating, constipation or diarrhea, low grade fever, heart palpitations, tachycardia, facial palsy, tinnitus, mental confusion, uncoordinated movement, pruritus, bone pain, flu-like syndrome, conjunctivitis and throat swelling.

 

Physicians may note objective symptoms of a Herxheimer reaction such as elevated creatinine, blood urea nitrogen, liver enzymes, sedimentation rate, gamma globulin or a decrease in white blood cells, hemoglobin, or platelets.

Any symptom, including abnormal lab results, that correlates with IT may be due to herxing.

Edited September 12, 2012 by Mayzoo

[Dedee]

Well, this is a tricky one. In my experience, herxing has very closly mimicked a flare. In fact, I would go as far as to say I can't really tell a difference. The only thing I have seen differenly with my daughter's herxing since starting lyme treatment is the complaints of physical symptoms. She began the complaints of leg aches, foot and ankle pain, and headaches before the behavior symptoms began. For you, things are complicated by the fact that you have strep in the house. Under normal conditions you would think your son couldn't possibly have gotten it since he is on so many antibiotics but then again, he has gotten strep before on antibiotics. I would probably test him just to rule it out. The other question to ask is are you giving anything to help with the herx reaction? I know how hard that is when he is having a hard time taking medicine. BTW, my daughter does the same thing with racing me while taking her medicine. Now it has become a problem because she has drawn me into this ritual thing with what we have to say and do to start the race......SO, that has back fired on me. Now we have to work on breaking that ritual....ugg, can't wait.

 

I would work really hard at increasing his fluids, giving epsom salt baths, and some other herx treatment to see if that helps. One other thing is to make sure he is pooping daily. Not sure if he has issues in that area or not (my daughter does). Our LLMD says they can't get rid of the toxins if things aren't moving through freely. We have to use Miralax daily (Sorry if TMI). I feel your pain.....we cut back on the lyme antibiotics to try to decrease the herx reaction two weeks ago but so far she is still going full force. I'm at the point now where I figure, if she's going to be a terror I might as well be giving her the full dose and just push through it.

 

I'm not sure I have helped any but I wanted you to know you aren't alone in this struggle. It's got to be really hard with him being so young. Please keep in touch and let me know how he is doing.

 

Dedee

Edited September 12, 2012 by Dedee

[SSS]

I have to agree with Dedee, herxing or die off in my dd7 looks very similar to a flair.

Basically, it is lack of control.

You could try giving a binder (like charcoal) couple hours after the antibiotics and other supplements, and see if you notice any improvement.

For myself, herx or die off feels like the article posted-

but in PANS dd,

lack of control-

whether it be her mind (OCD), vocal disturbances, or aggression towards another at home.

[LNN]

Ditto here. A herx looks a lot like a flair. Like DeeDee, it does seem to come with more physical complaints - muscle pain, headache. But lots of anxiety and a return of various Pandas symptoms. I think the overlap between lyme with neuro symptoms and Pandas is why we annoying lyme moms keep chiming in abou tthe lyme stuff. It's really hard to tell the two diseases apart in many kids. Flairs look a lot alike. It's a common complaint that when you're herxing, you can't tell if the treatment is actually doing any good or doing nothing. The only way you know is when it's done and you can see whether you feel better or not. But during that time, no good way to tell them apart.

 

Like S&S, I tend to see a loss of control. DS loses impulse control and temper control. I gets lots of "I don't feel good". Lots of calls from the school nurse or mornings where he tries to stay home.

 

Herxing for us also comes with yeast issues - hard to recognize in a boy. So we give an odorless garlic pill at dinner and that seems to keep yeast in check.

 

Motrin helps, keeping the bowels moving (trufiber, miralax, magnesium), binders like charcoal or bentonite clay might help (tho timing becomes a problem b/c you don't want to bind other meds, so they need to be taken away from other things), you can also supplement with things that increase glutathione and detox - alpha lipoic acid, resveratrol, CoQ10, vitamin C, lycopene (tomatoes).

 

When all else fails, take DCMom's advice. She posted about tips for helping a kid face school fears - that "what if this happens" loop of fears - and her advice was to repeat the mantra "whatever happens, you can handle it". Many days, the dog finds me walking through the house muttering "I can handle this...I can handle this..."

 

Good luck!

[Mayzoo]

Ditto here. A herx looks a lot like a flair. Like DeeDee, it does seem to come with more physical complaints - muscle pain, headache. But lots of anxiety and a return of various Pandas symptoms. I think the overlap between lyme with neuro symptoms and Pandas is why we annoying lyme moms keep chiming in abou tthe lyme stuff. It's really hard to tell the two diseases apart in many kids. Flairs look a lot alike. It's a common complaint that when you're herxing, you can't tell if the treatment is actually doing any good or doing nothing. The only way you know is when it's done and you can see whether you feel better or not. But during that time, no good way to tell them apart.

 

Like S&S, I tend to see a loss of control. DS loses impulse control and temper control. I gets lots of "I don't feel good". Lots of calls from the school nurse or mornings where he tries to stay home.

 

Herxing for us also comes with yeast issues - hard to recognize in a boy. So we give an odorless garlic pill at dinner and that seems to keep yeast in check.

 

Motrin helps, keeping the bowels moving (trufiber, miralax, magnesium), binders like charcoal or bentonite clay might help (tho timing becomes a problem b/c you don't want to bind other meds, so they need to be taken away from other things), you can also supplement with things that increase glutathione and detox - alpha lipoic acid, resveratrol, CoQ10, vitamin C, lycopene (tomatoes).

 

When all else fails, take DCMom's advice. She posted about tips for helping a kid face school fears - that "what if this happens" loop of fears - and her advice was to repeat the mantra "whatever happens, you can handle it". Many days, the dog finds me walking through the house muttering "I can handle this...I can handle this..."

 

Good luck!

 

I mutter Dora the fishes (Finding Nemo) motto: "Just keep swimming, just keep swimming." :D

Edited September 13, 2012 by Mayzoo

[dcmom]

Arial-

 

so sorry

 

I cannot comment on a herx, however, BOTH of my daughters got strep while on augmentin PLUS zithromax. One was symptomatic (sore throat, fever, etc), the other was not. Both cultured positive. We used a course of clindamycin, which worked on the strep, but we also had to to steroids to stop the pandas symptoms.

 

You are between a rock and a hard place, for sure- but I would definitely get him tested (strep can cause tummyaches, you know that I am sure).

 

You have to go with your gut- but it is hard to be sure it is a herx, when your dd has (or had) strep, and this is exactly how he would have reacted previously.