What does a herx look like?

[laure]

I need to understand the difference between extreme OCD symptoms and a herx. Dd10 was slowly stalling then declining on Augmentin,Zith, weekend Tindamax through the month of March, after huge gains Dec - Feb. LLMD added Bactrim last Thursday. OCD continues to get worse, almost to the point of pre-treatment now. After all this time I still don't know what a herx looks like. All I know is sudden, raging OCD, brain fog, tears. Is this what a herx looks like to other parents? Strep titers remain in mid 200s, anti- Dnase B higher than ever at 978. Takes 220 bil probiotics and 10 bentonite clay daily. Advil 2 x daily to help mood...

[sf_mom]

Unfortunately, Yes. It took 12 weeks for things to settle out initially when we started Lyme treatment for older DS and we revisited almost every TIC he had at sudden on-set plus some new ones. Some children have taken longer... closer to six months. Its very scary. Be consistent with detox.

 

Another little girl originally thought to be PANDAs discovered Lyme with similar titers has been treated with combo antibiotics since last June and her anti-DNase-B is finally down. Its currently in the 300s and heading in right direction. She did have one hdIVIG in the very beginning prior to Lyme disgnoses and titers did not resolve.

 

Hope that helps a little.

 

-Wendy

Edited April 7, 2011 by SF Mom

[laure]

Thanks Wendy. Knew I had to wait for the sun to come up in SF. We also see Dr. B again in 3 weeks. Wondering if he will replace the Augmentin or Zith with another abx, seeing as how those two were losing their effectiveness. Perhaps she became resistant? Others experience with this?

[sf_mom]

From our Dr.'s perspective antibiotics are rotated when treatment stalls or other clinical symptoms take predominance. He rarely holds the same protocol for longer than six months. In addition he will pulse certain antibiotics throughout treatment. He is big on herbal protocol in addition to antibiotics. He does not view PANDAS/Lyme as separate issues when both Lyme/strep are present and is cautious when saying 'its' Lyme/Pandas/Myco or a specific virus, etc.

 

There is an LLMD in SF that holds protocol much longer, treats co-infections very aggressively on front end while tracking CD57 and C4A closely to determine further treatment. He does blood work every 12 weeks and often rechecks for co-infections taking predominance. He typically does not use tindamax or any cyst busting until these markers are fairly normalized. In his experience the Lyme clears fairly quickly if all co-infections are eradicated and inflammation markers (C4A) and CD57 are within normal ranges. He does not use any herbals or make any detox recommendations.

 

There is another LLMD in CO that predominately relies on ART - Muscle Testing. If you are comfortable with the concept of ART its an easy way to determine how your child is infected and what antibiotics the body needs to effectively eradicate specific infection. He also provides homeopathic support and detox that the body is requesting via ART. He tends to be very aggressive with antibiotics and has success with shorter timeframes of recovery. He does believe that neurotoxins/toxin exist beyond infection causing symptoms when dumped from the body post treatment timeframe.

 

I understand that Dr. J tends to hold specific protocol longer. Use tindamax on weekends only. Does not typically make detox or herbal recommendations. In conjunction with Dr. B, the recommendation is typically made to treat strep/PANDAS with repeat hdIVIG.

 

I think it is important to know the differences in these Dr. approaches and to understand their strengths. There is more than one way to get these kids well and I would be hard pressed to say any Dr.'s approach is better than another. They have all helped many. However, it is also important to realize when something isn't working for your child and to perhaps emphasize those issues with your Dr or see a Dr. that more suits your needs at a specific time during treatment.

 

I've outlined all of the different perspectives because I suspect Dr. Bs recommendation will be hdIVIG to address the strep titers and won't specifically address antibiotic protocol with Lyme/co-infections. Hopefully, you've gained enough experience to either proceed or wait it out. Its a difficult decision and unfortunately no clear direction that will work specifically for your child. Truly trail and error.

Edited April 7, 2011 by SF Mom

[laure]

From our Dr.'s perspective antibiotics are rotated when treatment stalls or other clinical symptoms take predominance. He rarely holds the same protocol for longer than six months. In addition he will pulse certain antibiotics throughout treatment. He is big on herbal protocol in addition to antibiotics. He does not view PANDAS/Lyme as separate issues when both Lyme/strep are present and is cautious when saying 'its' Lyme/Pandas/Myco or a specific virus, etc.

 

There is an LLMD in SF that holds protocol much longer, treats co-infections very aggressively on front end while tracking CD57 and C4A closely to determine further treatment. He does blood work every 12 weeks and often rechecks for co-infections taking predominance. He typically does not use tindamax or any cyst busting until these markers are fairly normalized. In his experience the Lyme clears fairly quickly if all co-infections are eradicated and inflammation markers (C4A) and CD57 are within normal ranges. He does not use any herbals or make any detox recommendations.

 

There is another LLMD in CO that predominately relies on ART - Muscle Testing. If you are comfortable with the concept of ART its an easy way to determine how your child is infected and what antibiotics the body needs to effectively eradicate specific infection. He also provides homeopathic support and detox that the body is requesting via ART. He tends to be very aggressive with antibiotics and has success with shorter timeframes of recovery. He does believe that neurotoxins/toxin exist beyond infection causing symptoms when dumped from the body post treatment timeframe.

 

I understand that Dr. J tends to hold specific protocol longer. Use tindamax on weekends only. Does not typically make detox or herbal recommendations. In conjunction with Dr. B, the recommendation is typically made to treat strep/PANDAS with repeat hdIVIG.

 

I think it is important to know the differences in these Dr. approaches and to understand their strengths. There is more than one way to get these kids well and I would be hard pressed to say any Dr.'s approach is better than another. They have all helped many. However, it is also important to realize when something isn't working for your child and to perhaps emphasize those issues with your Dr or see a Dr. that more suits your needs at a specific time during treatment.

 

I've outlined all of the different perspectives because I suspect Dr. Bs recommendation will be hdIVIG to address the strep titers and won't specifically address antibiotic protocol with Lyme/co-infections. Hopefully, you've gained enough experience to either proceed or wait it out. Its a difficult decision and unfortunately no clear direction that will work specifically for your child. Truly trail and error.

 

 

Thanks so much for this Wendy! A lot to think about. Did you mean 6 weeks in your first paragraph? I thought I remember you saying that before. I am scared and confused. We are juggling so many things, and sometimes it seems like we are throwing money and time into a sink hole... just want to be sure we are moving in the right direction, and don't keep slipping back into this hole. Also a tough time of year in the Northeast right now, everyone is depressed and gloomy, so hope is a little hard to find right now. Thanks again for taking the time to educate us all.

[sf_mom]

I did mean 6 months and not six weeks. I know its hard to hear and suspect you'll see improvement prior to that. BUT... If Klinghardt is right, your child probably had lyme for two years prior to the first OCD symptom appearing. Our kids don't appear typically sick but have probably been sicker much longer then we ever imagined.

 

I unfortunately do not know any quick fix. I do know they can get better and unfortunately we 'as parents' have to be great case managers. Well beyond what we ever imagined and even beyond maybe any one Dr. There will be continued exposures and herxs that will have your head spinning. With the introduction of a new antibiotic I can only recommend NOT making too many changes in reaction to an increase in symptoms. Focus on detox and wait it out. If antibiotics were changed again in three weeks you might only add to the potential herx.

 

I've been at this PANDAS/Lyme for 20 months now and I know and understand your fear all too well. Hopefully you'll gain improvements quickly to provide confidence once again you are on the right path with antibiotics.

 

-Wendy

Edited April 7, 2011 by SF Mom

[momaine]

Egads, I hope this herx my dd is in doesn't last for six months! We are 11 weeks into lyme treatment and 5 weeks into a significant herx. It is so frustrating to not see more improvement. I am quite confident is is a huge herx though as she keeps having Lyme rashes regularly and now more often since I introduced some things to help with Detox.

 

Does anyone else's child have Lyme rashes regularly? Almost every time my dd has a really hot shower (now with epsom salts) (couple times a week) she breaks out in a lyme rash. IT doesn't last long, maybe 5 minutes and then its gone. But it significant and covers both legs from her toes to the tops of both legs. Somestimes it looks like mini bulls eye rashes and other times it is just all red, all connected together. Sometimes her skin turns purple, almost bruised looking around the red area. Then five minutes later its back to normal. It's really weird. It does make me think we're on the right track though.

[adkmom]

I need to understand the difference between extreme OCD symptoms and a herx. Dd10 was slowly stalling then declining on Augmentin,Zith, weekend Tindamax through the month of March, after huge gains Dec - Feb. LLMD added Bactrim last Thursday. OCD continues to get worse, almost to the point of pre-treatment now. After all this time I still don't know what a herx looks like. All I know is sudden, raging OCD, brain fog, tears. Is this what a herx looks like to other parents? Strep titers remain in mid 200s, anti- Dnase B higher than ever at 978. Takes 220 bil probiotics and 10 bentonite clay daily. Advil 2 x daily to help mood...

 

Hey Laura,

 

Sorry to hear things are so rough! Hang in there. We just got back from our appt. with Dr. J and Dr. B. Jones made the changes I expected. Suspects Bartonella and ordered more tests. Started ds on Bactrim and in 2 weeks to start Tindamax on the weekends. He did mentioned that if things got bad on Tindamax, cut back from 2 days to 1 day. I wonder if that would be helpful for you? He suggested we check in after our first week of treatment. So, maybe you can call and check in with him, if you haven't already. When I asked if I should suspect things getting worse on Bactrim, he said maybe not, the other antibiotics may have already cleaned most of the toxins out...or something to that effect. But was more concerned about the effects Tindamax could have. And to start it off slowly. Your dealing with different symptoms, but he did say he'd expect to see improvements begin in about one month (I'm leary of this after everything I've been reading and don't want to get my hopes up) Sorry I don't have more suggestions!

[KaraM]

Wendy,

 

This just made my eyes pop out of my head. The rash my dd8 got (that I wrote about in the Mass LLMD visit post) appeared in late spring/early summer 2007. ) Her OCD started in summer 2009. Is Kinghardt your doc or did s/he write a book or something?? Where can I find more info about this two year period? (I'll google, but would love it if you pointed me in the right direction.)

 

Thanks,

Kara

 

BUT... If Klinghardt is right, your child probably had lyme for two years prior to the first OCD symptom appearing. Our kids don't appear typically sick but have probably been sicker much longer then we ever imagined.

[laure]

Wendy,

 

This just made my eyes pop out of my head. The rash my dd8 got (that I wrote about in the Mass LLMD visit post) appeared in late spring/early summer 2007. ) Her OCD started in summer 2009. Is Kinghardt your doc or did s/he write a book or something?? Where can I find more info about this two year period? (I'll google, but would love it if you pointed me in the right direction.)

 

Thanks,

Kara

 

BUT... If Klinghardt is right, your child probably had lyme for two years prior to the first OCD symptom appearing. Our kids don't appear typically sick but have probably been sicker much longer then we ever imagined.

 

 

Kara,

MichaelTampa posted a transcript of a talk Klinghardt gave...fascinating, lots of info like this. You can find it on his content. (That feature isn't working for me right now or I'd post it). Klinghardt talks about MS and ALS and other things being lyme related - very scary.

[laure]

New stuff - last night she complained about shaking all over, not cold just quivering. Anyone ever experience this?

[sf_mom]

Its important to document daily symptoms 'like chill's'...... I do periodically get them and then tend run hot. Is she running fevers at all? You know chills are the bodies way of eliminating toxins in advance of the fever. In LLMs post about herxhiemers it discusses the notion of chills.

 

With Bartonell/Babesia you will tend to run low grade fevers one is in the morning and one is in the late afternoon but I forget which is when.... 'I think' the babesia is late afternoon.

[sf_mom]

Our twins have all kinds of similar rashes to each other that appear different throughout the day. We do have improvement but it is slow. One twin is confirmed positive for Babesia/Bartonella/HHV6/Coxsackies and believed to have Lyme. The other twin is positive for HHV6/Coxsackies and believed to have Babesia/Bartonella/Lyme.

[mommakath]

I am a newbie at Lyme but Dr. J did say that IVIG would only HELP my ds9. Dr. B did not recommend it for my dd12. So, I do think it is all on a patient by patient basis. Dr. J does recommend IVIG as well sometimes. Ya know.....if there's good that can come from it, I say leave no stone unturned. I do see where these forums are VERY helpful for sharing info but what is good for one is not always good for the other. Perhaps that is why some dos recommend different things for different kids. My two kids have never been treated the same but both have Pandas/ Bartonella. Just for what it is worth.