Herx or flare?

[matis_mom]

Ok, so we are all in about day 20 of our abxs...

 

DD10 is having intrusive thoughts, fears, and headaches, with pain around, or rather behind, the eye.

 

DD8 complaints about a different joint each day, and also pain in the shins, and sometimes thighs.

 

How do you know if

 

a) the antibiotic is working and it's herxing

 

or

 

the antibiotics is NOT working and the disease is taking it's toll

 

PANDAS DS12 is showing increased anxiety and urinary frequency...

 

Anyone?

[smartyjones]

a) the antibiotic is working and it's herxing

 

or

 

the antibiotics is NOT working and the disease is taking it's toll

 

 

that my dear watson is the question!! yes, so very hard. number one -- i'd say be in close contact with your treating physician.

 

ds went through what we believe to be a herx like reaction in July with things we'd never seen before -- severe OCD contamination resulting in not eating or drinking. we were in close contact with his dr who was relaxed and sure it was a herx. at the same time, he was adamant that if we needed to do something for his well-being (ER IV) then we should take short-term action when necessary. many treatments (i believe what you are following for lyme) are long-term to see success in healing.

after the week or so of intense trouble, he cycled through troublesome behaviors. and to some extent, still is -- 10 weeks-ish later. we stay in close contact with dr and his office.

 

from our experience, he seeemed to cylce through behaviors with a five day to week time frame for specific behaviors -- like, food issues; then silly rhyming; then inappropriate upsets; (i don't have my charts, just some thoughts from memory). now, he's rather hyper with short attention to tasks i ask of him. that's been a few weeks.

during intense time, dh was quite freaked out and since has often thought he's downsliding. we also saw local ped (open to pandas but not so knowledgable) just to be set up if we had to go to ER. when i ask dh to really think about it, he agrees it does seem to be cycling of behaviors that come and go. also, ds has always had issues with peeing -- needing me to be in the room, needing help, etc. now, he's just taking care of things by himself.

 

SO -- i'd say, keep in very close contact with dr's office; evaluate if anything at all has improved; closely watch/chart to see if troublesome things come and go.

i believe i recently read pain behind the eye being associated with bartonella or babesia. ds tested for no co-infections. about 6 mths before pandas onset, he complained of eye pain. we'd thought this was likely sinus that began and continued until pandas onset. i found that interesting b/c i'd never seen that on co-infection list before.

[lyme_mom]

Ok, so we are all in about day 20 of our abxs...

 

DD10 is having intrusive thoughts, fears, and headaches, with pain around, or rather behind, the eye.

 

DD8 complaints about a different joint each day, and also pain in the shins, and sometimes thighs.

 

How do you know if

 

a) the antibiotic is working and it's herxing

 

or

 

the antibiotics is NOT working and the disease is taking it's toll

 

PANDAS DS12 is showing increased anxiety and urinary frequency...

 

Anyone?

It is probably herxing but it is good to let the llmd know. Eye pain can be a symptom but I should mention that my sister had pain behind the eye during her lyme treatment. At the urging of our llmd, she had her house tested for mold and finally learned that her house had toxic mold in it. She had no idea that she had a leak and that this mold was circulating through her home. Once the mold was removed and her air vents were cleaned the eye pain she had had for a long time went away. Mold in the home can make it hard for a person with lyme (or any other illness for that matter) to get well. I would write down the symptoms (I know it is hard to do with all you have going on). Thigh pain is a symptom of babesia. When you start treating lyme sometimes the coinfection symptoms become more pronounced. Good luck!

[matis_mom]

Ok, so we are all in about day 20 of our abxs...

 

DD10 is having intrusive thoughts, fears, and headaches, with pain around, or rather behind, the eye.

 

DD8 complaints about a different joint each day, and also pain in the shins, and sometimes thighs.

 

How do you know if

 

a) the antibiotic is working and it's herxing

 

or

 

the antibiotics is NOT working and the disease is taking it's toll

 

PANDAS DS12 is showing increased anxiety and urinary frequency...

 

Anyone?

It is probably herxing but it is good to let the llmd know. Eye pain can be a symptom but I should mention that my sister had pain behind the eye during her lyme treatment. At the urging of our llmd, she had her house tested for mold and finally learned that her house had toxic mold in it. She had no idea that she had a leak and that this mold was circulating through her home. Once the mold was removed and her air vents were cleaned the eye pain she had had for a long time went away. Mold in the home can make it hard for a person with lyme (or any other illness for that matter) to get well. I would write down the symptoms (I know it is hard to do with all you have going on). Thigh pain is a symptom of babesia. When you start treating lyme sometimes the coinfection symptoms become more pronounced. Good luck!

Oh man! The mold... Our original LLMD wanted us to test for it. With so much going on, we never did. It would be around $500 that I would much rather spend in treatment... seems anything and everything that needs to be checked is in the hundreds of dollars! LOL!

But yes, I have to keep better track and see if I see some kind of trend here.

Thanks for the help!

[sf_mom]

So:

 

DD 3: had unfound fears, night waking, night sweats, reassurance OCD type behavior, mood switching, etc. etc since starting Lyme protocol. She was never like this prior to the doubled up the antibiotics/lyme protocol. She is now 4+ weeks into treatment and most of those issues have resolved.

 

DS 3: had/has rage behavior, night sweats, mood liability since starting Lyme protocol. He had some of these issue plus OCD prior to starting antibiotics last Nov. and all of them resolved prior to starting cyst buster. He is also 4 + weeks into treatment.... he has mostly good days but out of no where all the symptoms can reemerge for a couple days..... last weekend, we had two really bad days back to back and he has good ever since. I note those days for the Dr. to determine Herxing cycle.

 

DS 6: I've seen it all in terms of TICS in the last 9 weeks since starting the cyst buster (mostly resolved prior to starting lyme protocol). We've also had blips of OCD since starting cyst buster (resolved for the last six months). Plus night waking, mood liability, night sweats, complaints of leg, knee, feet pain, flu like symptoms, etc. etc. etc. EVERYTHING has resolved but mood liability and infrequent night waking..... He has been TIC free for about a week now.

 

I have had headaches, sharp pains and aches in my hands, feet, knees, itchiness, just not feeling well, urinary frequency and urgency etc. etc. etc.

 

Its all been herxing...... its a crazy, crazy, crazy journey we are on. I think everything you are experiencing is to be expected. Remember Lyme likes to hang out in the bladder and why DD12 is having the urinary issues.

[matis_mom]

So:

 

DD 3: had unfound fears, night waking, night sweats, reassurance OCD type behavior, mood switching, etc. etc since starting Lyme protocol. She was never like this prior to the doubled up the antibiotics/lyme protocol. She is now 4+ weeks into treatment and most of those issues have resolved.

 

DS 3: had/has rage behavior, night sweats, mood liability since starting Lyme protocol. He had some of these issue plus OCD prior to starting antibiotics last Nov. and all of them resolved prior to starting cyst buster. He is also 4 + weeks into treatment.... he has mostly good days but out of no where all the symptoms can reemerge for a couple days..... last weekend, we had two really bad days back to back and he has good ever since. I note those days for the Dr. to determine Herxing cycle.

 

DS 6: I've seen it all in terms of TICS in the last 9 weeks since starting the cyst buster (mostly resolved prior to starting lyme protocol). We've also had blips of OCD since starting cyst buster (resolved for the last six months). Plus night waking, mood liability, night sweats, complaints of leg, knee, feet pain, flu like symptoms, etc. etc. etc. EVERYTHING has resolved but mood liability and infrequent night waking..... He has been TIC free for about a week now.

 

I have had headaches, sharp pains and aches in my hands, feet, knees, itchiness, just not feeling well, urinary frequency and urgency etc. etc. etc.

 

Its all been herxing...... its a crazy, crazy, crazy journey we are on. I think everything you are experiencing is to be expected. Remember Lyme likes to hang out in the bladder and why DD12 is having the urinary issues.

Wow, so you've been there and back. Thanks for posting this, it makes me feel better. So, do you think all of the PANDAS symptoms your kids had before the Lyme diagnosis were due to Lyme? Or are there some that are "purely" PANDAS?

 

I am just re-thinking everything these days! Those monthly "PANDAS exacerbations" DS had... were they just Lyme flaring up? Or were they truly PANDAS?

 

I guess it doesn't matter what we call it as long as we can get it taken care of. I sure wish I had listened to the first LLMD we saw... Live and learn!

Edited October 11, 2010 by mati's mom

[sf_mom]

We never investigated Lyme when pursuing PANDAS diagnoses. We had no idea it could be a factor. We had an obvious strep trigger, cluster of children who got sick, etc. etc. etc...... Geez, you know the story.

 

How our LLMD describes what happened was our older son had a trigger, it was several strep events (plus vaccinations 3 weeks prior both times) and his body had a hyper immune response. Our younger son's body had an explosive response to that first strep event that landed him in the hospital with a diagnoses of Kawasaki's at 5 1/2 months old. Our Dr. does not make a separate distinction of PANDAS. He does not feel strep is our children's underlying problem. I am no longer as fearful of strep as I was last year.

 

Our Dr. believes when the chronic underlying infection is gone the hyper immune response stops. In essence, no auto-immune in absence of infection. He even felt my children might develop antibodies to Lyme some day and stated the immune system is very dynamic.

 

Your son's monthly flair's were a combo of everything: underlying infection, weaken response, new assaults. It will be interesting to see how long it takes your son to fully recover with just the correct antibiotics given PANDAS diagnoses and no further more aggressive intervention.

 

One thing I think I've mentioned before but I think its critical for a child with Lyme. Our LLMD prescribes Bactroban Nasal Ointment and I swab the kids noses in the morning and prior to bed. Its an inexpensive way to protect them from additional bacteria's entering their bodies. I'm sure it would also help prevent things coming into the home from your other children who may not have Lyme.

 

p.s. I just read this from the Ann Corson article that Pacific Mom posted. Make sure when you talk with your LLMD next, you discuss with him the pain your daughter is having behind her eye: "headaches resulting from Babesia tend to be frontal or behind the eyes"

Edited October 11, 2010 by SF Mom