backsliding

[laure]

Returned from visit to Dr. B yesterday. After 5 months lyme treatment, excellent results for first 2 months, stalled for next 2, serious backsliding all of April. She was licking both hands continuously the entire 4 hour car trip, paced around and around the table during the 1 hour waiting room time, (felt sorry for the other patients), tons and tons of OCD contamination stuff all back, plus new OCD behaviors. So Dr. B looked and listened and determined that she has a chronic sinus infection, probably has had it for 2 months or more from our description. My fault I guess, she never really seems sick, but we did give her dimetapp and sudafed for about 5 days back in early March. He said her nasal passages are too small for drainage, and strep likely blocked in there, all the (4!!) abx she is on can't help her if her sinuses won't drain. She has complained of a few headaches from time to time, and eye pain, and also that her ears felt "blocked". Although we talked about steroids not being great with lyme, he said that is the only option to treat the strep in her sinuses right now...so she is on a 6 day course, plus steroid mist and Mucinex. The crazies started last night, which always happens with steroids for us. Closest thing to a "herx" we ever experienced. Calling him back on Monday for follow-up discussion.

[tpotter]

Thanks for the update. I'm sure you realize how lucky you are that you found Dr. B...so knowledgeable and caring.

 

I'll keep my fingers crossed that things don't get too "dicey" with the steroids!

[momaine]

My dd has similar issues with sinus infections. SHe doesn't seem sick when she has them. Only she knows when she has one and she can tell because the phlegm that had always been in her throat thickens. BUT, my dd has now been on lyme treatment for 11 weeks and the one thing that has resolved (well, almost) is that she no longer has a sinus drainage issues. She has finally, after a year of not being able to, gotten off daily musinex and sinus rinses. She does have to use it if she gets a cold now, but not regularly. I think the Lyme can cause sinus issues that have mostly resolved. Hang in there. Dr. J has told me that a short course of steroids is okay.

 

He also said that the kids (like mine) that are taking a long time to see positive changes probably have a high spirochetal load. My dd struggles with herxing daily. Trying hard to get enough detox into her. It's a tough situation.

[laure]

My dd has similar issues with sinus infections. SHe doesn't seem sick when she has them. Only she knows when she has one and she can tell because the phlegm that had always been in her throat thickens. BUT, my dd has now been on lyme treatment for 11 weeks and the one thing that has resolved (well, almost) is that she no longer has a sinus drainage issues. She has finally, after a year of not being able to, gotten off daily musinex and sinus rinses. She does have to use it if she gets a cold now, but not regularly. I think the Lyme can cause sinus issues that have mostly resolved. Hang in there. Dr. J has told me that a short course of steroids is okay.

 

He also said that the kids (like mine) that are taking a long time to see positive changes probably have a high spirochetal load. My dd struggles with herxing daily. Trying hard to get enough detox into her. It's a tough situation.

 

Thanks for that reassuring info Momaine. As you may know, we also see Dr. J. I guess I need to listen to her complaints more. It's sometimes tough to know what symptoms are caused by 1. the abx, 2. a herx, or 3. a new infection. Someday I will figure it all out. Glad her abx weren't changed up, although it was discussed, b/c she has only been on this combo for 3.5 weeks, and we really need to see if this is all a herx. Dr. B puzzled over it for awhile. Then decided to stay the course for now. She is off to school this morning, albeit with a headache, but luckily she loves school.

[laure]

Thanks for the update. I'm sure you realize how lucky you are that you found Dr. B...so knowledgeable and caring.

 

I'll keep my fingers crossed that things don't get too "dicey" with the steroids!

 

 

Thanks, we love Dr. B. He also gave advice for my son , (at college) who has sinus issues. On allergy drops, which Dr. B believes don't work, said he should be taking shots instead. We were hoping to avoid that, but after 2 years, his allergies really haven't improved that much. No other issues thank God!

[LNN]

I'll offer a different spin on things, just my own personal experience. DS8 started lyme/bartonella protocol 7 months ago. Awesome response for the first 4 months. This is a breeze, I thought. Then in Feb, he stalled. Brain fog started to creep in, lots of muscle pain. We focused on extra detox for a month but things continued downhill. A small OCD compulsion crept in. More fog. End of March, we switched abx combo to add omnicef, then a few weeks later, tindamax.

 

First week on omnicef brought a big slide and return of symptoms. Motor tics came back after an 18 month vacation. Ok, I thought. Herx. I can manage. Four weeks later and things are as bad as they were last summer. His tics are every 2-3 minutes, very obvious and jerky (maybe myoclonic). I feel like I've been transported back in time to the start of this whole ugly mess. Where did that awesome boy from January go?? I'm trying to convince myself it's a herx, but 5 weeks - really? Maybe nothing's working. Maybe it's not lyme. If it is lyme, maybe this is a flair and not a herx. Oh crap, this sucks - is all I know for sure.

 

Finally, this week, everything is calming way down. Tics have dropped to a few times per day - less every day. Fog is mostly gone. Muscle pain is gone. So mom is breathing again.

 

I'm not a doctor and I mean no disrespect to any doctor who's clearly more knowledgeable than I am. But Dr J has a quote that is something along the lines of "the eyes can only see what the mind can understand". If a doctor doesn't know Pandas, they're not going to know the ins and outs of treatment. If a doctor doesn't know lyme, same thing. IMHO, the way our sub-set of kids presents with lyme looks 90-95% identical to Pandas. But the treatments are different - sometimes diametrically opposed (e.g. steroid use). My point of this post is that I think backsliding is not uncommon and may be a sign that abx need to be switched, or more detox is needed (meaning the abx are actually very effective and you're not seeing improvement b/c you're not shedding the toxins fast enough), or maybe some herbs or supplements are called for. I don't think it automatically means there must be strep involved or that strep is resistant to 4 abx. This just doesn't make sense to me.

 

I wish I could do a better job of conveying tone in this post, because I mean it in the humblest of ways. I'm not doctor bashing or telling you I'm some sort of expert. I mean no disrespect to any choices you're making or how you're proceeding. I only mean to offer a different take on a similar experience, for whatever it's worth. I hope you start to enjoy improvements quickly.

 

Laura

[laure]

I'll offer a different spin on things, just my own personal experience. DS8 started lyme/bartonella protocol 7 months ago. Awesome response for the first 4 months. This is a breeze, I thought. Then in Feb, he stalled. Brain fog started to creep in, lots of muscle pain. We focused on extra detox for a month but things continued downhill. A small OCD compulsion crept in. More fog. End of March, we switched abx combo to add omnicef, then a few weeks later, tindamax.

 

First week on omnicef brought a big slide and return of symptoms. Motor tics came back after an 18 month vacation. Ok, I thought. Herx. I can manage. Four weeks later and things are as bad as they were last summer. His tics are every 2-3 minutes, very obvious and jerky (maybe myoclonic). I feel like I've been transported back in time to the start of this whole ugly mess. Where did that awesome boy from January go?? I'm trying to convince myself it's a herx, but 5 weeks - really? Maybe nothing's working. Maybe it's not lyme. If it is lyme, maybe this is a flair and not a herx. Oh crap, this sucks - is all I know for sure.

 

Finally, this week, everything is calming way down. Tics have dropped to a few times per day - less every day. Fog is mostly gone. Muscle pain is gone. So mom is breathing again.

 

I'm not a doctor and I mean no disrespect to any doctor who's clearly more knowledgeable than I am. But Dr J has a quote that is something along the lines of "the eyes can only see what the mind can understand". If a doctor doesn't know Pandas, they're not going to know the ins and outs of treatment. If a doctor doesn't know lyme, same thing. IMHO, the way our sub-set of kids presents with lyme looks 90-95% identical to Pandas. But the treatments are different - sometimes diametrically opposed (e.g. steroid use). My point of this post is that I think backsliding is not uncommon and may be a sign that abx need to be switched, or more detox is needed (meaning the abx are actually very effective and you're not seeing improvement b/c you're not shedding the toxins fast enough), or maybe some herbs or supplements are called for. I don't think it automatically means there must be strep involved or that strep is resistant to 4 abx. This just doesn't make sense to me.

 

I wish I could do a better job of conveying tone in this post, because I mean it in the humblest of ways. I'm not doctor bashing or telling you I'm some sort of expert. I mean no disrespect to any choices you're making or how you're proceeding. I only mean to offer a different take on a similar experience, for whatever it's worth. I hope you start to enjoy improvements quickly.

 

Laura

 

Thanks for your perspective Laura, and I welcome the differing opinions. I figured we'd get many of these. Who knows the right thing to do, but all I know is it was going downhill fast, and school was probably not going to be an option within a few days...she can't wear shoes, can't use her hands, (dropped a glass of milk trying to carry it in her fists last week), and can't bring books home or to school. So we all needed a change of some sort. Other advisors on this forum were suggesting don't change abx yet, too soon. So this was other option, and in any case, the sinus thing seemed a real possibility. For detox we do 10 bentonite clay pills daily, burbur drops twice daily, olive leaf extract daily. Lots of exercise and lots of fluids. She takes 3 hot showers a day. Any other suggestions I'll take!

[laure]

I'll offer a different spin on things, just my own personal experience. DS8 started lyme/bartonella protocol 7 months ago. Awesome response for the first 4 months. This is a breeze, I thought. Then in Feb, he stalled. Brain fog started to creep in, lots of muscle pain. We focused on extra detox for a month but things continued downhill. A small OCD compulsion crept in. More fog. End of March, we switched abx combo to add omnicef, then a few weeks later, tindamax.

 

First week on omnicef brought a big slide and return of symptoms. Motor tics came back after an 18 month vacation. Ok, I thought. Herx. I can manage. Four weeks later and things are as bad as they were last summer. His tics are every 2-3 minutes, very obvious and jerky (maybe myoclonic). I feel like I've been transported back in time to the start of this whole ugly mess. Where did that awesome boy from January go?? I'm trying to convince myself it's a herx, but 5 weeks - really? Maybe nothing's working. Maybe it's not lyme. If it is lyme, maybe this is a flair and not a herx. Oh crap, this sucks - is all I know for sure.

 

Finally, this week, everything is calming way down. Tics have dropped to a few times per day - less every day. Fog is mostly gone. Muscle pain is gone. So mom is breathing again.

 

I'm not a doctor and I mean no disrespect to any doctor who's clearly more knowledgeable than I am. But Dr J has a quote that is something along the lines of "the eyes can only see what the mind can understand". If a doctor doesn't know Pandas, they're not going to know the ins and outs of treatment. If a doctor doesn't know lyme, same thing. IMHO, the way our sub-set of kids presents with lyme looks 90-95% identical to Pandas. But the treatments are different - sometimes diametrically opposed (e.g. steroid use). My point of this post is that I think backsliding is not uncommon and may be a sign that abx need to be switched, or more detox is needed (meaning the abx are actually very effective and you're not seeing improvement b/c you're not shedding the toxins fast enough), or maybe some herbs or supplements are called for. I don't think it automatically means there must be strep involved or that strep is resistant to 4 abx. This just doesn't make sense to me.

 

I wish I could do a better job of conveying tone in this post, because I mean it in the humblest of ways. I'm not doctor bashing or telling you I'm some sort of expert. I mean no disrespect to any choices you're making or how you're proceeding. I only mean to offer a different take on a similar experience, for whatever it's worth. I hope you start to enjoy improvements quickly.

 

Laura

 

Thanks for your perspective Laura, and I welcome the differing opinions. I figured we'd get many of these. Who knows the right thing to do, but all I know is it was going downhill fast, and school was probably not going to be an option within a few days...she can't wear shoes, can't use her hands, (dropped a glass of milk trying to carry it in her fists last week), and can't bring books home or to school. So we all needed a change of some sort. Other advisors on this forum were suggesting don't change abx yet, too soon. So this was other option, and in any case, the sinus thing seemed a real possibility. For detox we do 10 bentonite clay pills daily, burbur drops twice daily, olive leaf extract daily. Lots of exercise and lots of fluids. She takes 3 hot showers a day. Any other suggestions I'll take!

 

Oh, and I should also mention that her titers were up a lot: ASO was up to 240 from 130, and anti Dnase B up to 978. These have always had huge correlation with OCD for her.

[sf_mom]

Laura,

 

I feel for your situation and again this is only temporary backslide. I have read that 'short' course steroids can be fine for Lyme. BUT, as your daughter's best case manager its important to know when something isn't working no matter what a Dr. says. if you see improvement with the steroids then fantastic!!!! If she returns quickly to her prior baseline and/or a little worse.... they were of no help. Document well over these next two weeks.

 

There are a couple of homeopathic/prescription nasal medications that can help clear and protect. We've used Bactroban Nasal ointment and it is prescribed by our LLMD. Initially we used everyday prior to walking out the door to school. Now we use it once every three days. Or if were going to be in a social setting with a lot of kids. It decreases up 90% of infection coming in through nose. Hospital staff typically use for continual Merca exposure. You can also use Notatum Quentans Nasal Spray recommended by Jodie on the forum. We also spray this in our kids mouth.

 

The current combo of antibiotics is a lot. She is probably approaching her 4th week typically when Lyme flairs.... During this time period 28 to 34 days I would expect her to be worse and then 'slightly' better give or take a couple days. Improvement might only be one thing... but you'll have an intuitive feeling.

 

Double up on the bentonite pills if you can 20 pills = 1 cup and my son takes at least 1 1/2 cups per day. I know it sounds like a lot and I can only give our testimony but continued heavy detox has helped our son a lot.

 

I'd be on the phone making a follow-up appointment with Dr. Jones for another 5 weeks from now. He will either give you confidence to stay the course or make an antibiotic switch based on his best experience and her situation

 

Has Dr. B said anything about a potential IVIG as a possibility?

 

P.S. If you want to confirm she is still herxing from recent rotation. You can always stop antibiotics for 48 hours. This has been done by many of us. BUT, I'd wait to do this until you know effectiveness of steroid.

 

-Wendy

Edited April 27, 2011 by SF Mom

[philamom]

laure- praying this brings relief! I'm on zith 500mg daily and managed to get a sinus infection. It's now day eight and not letting up...so off to the doctors tomorrow. I was kind of shocked the zith wouldn't take care of it. I'll wait two days and probably switch to Augmentin -- what works in my case. Is Augmnetin one of the abx your daughter is taking?

 

Anyway, thinking of you & your daughter!!

[LNN]

Ok, so the titer info helps change my perspective. Thanks for sharing.

Detox is new to me and I'm still feeling my way along. But it feels like things like charcoal and clay bind to toxins that have already been moved to the gut. But don't help with getting those toxins out of the blood stream and into the gut or out of the liver - am I wrong on this?

Looking at the toxins upstream from the gut, milk thistle helped my son a lot (but avoid if there's ragweed allergy) and glutathione helped. if you can't get glutathione, alpha lipoic acid is a precursor to glutathione.

 

My daughter can't take milk thistle, so I'm considering inositol or SAMe, which may also help with her OCD/anxiety. here's something on SAMe and the liver...My link

 

Philamom - FWIW - zith never helps with my sinus infections. I use ceftin or amox. - and remember to steal some probiotics from your child. Don't need a yeast infection on top of everything else

[laure]

laure- praying this brings relief! I'm on zith 500mg daily and managed to get a sinus infection. It's now day eight and not letting up...so off to the doctors tomorrow. I was kind of shocked the zith wouldn't take care of it. I'll wait two days and probably switch to Augmentin -- what works in my case. Is Augmnetin one of the abx your daughter is taking?

 

Anyway, thinking of you & your daughter!!

 

Augmentin, Bactrim, Tindamax, Zithromax. Augmentin for 3 weeks always helps me personally with sinus infections, and a steroid nasal spray. But I am not positive for lyme, at least that I know of.

[laure]

Ok, so the titer info helps change my perspective. Thanks for sharing.

Detox is new to me and I'm still feeling my way along. But it feels like things like charcoal and clay bind to toxins that have already been moved to the gut. But don't help with getting those toxins out of the blood stream and into the gut or out of the liver - am I wrong on this?

Looking at the toxins upstream from the gut, milk thistle helped my son a lot (but avoid if there's ragweed allergy) and glutathione helped. if you can't get glutathione, alpha lipoic acid is a precursor to glutathione.

 

My daughter can't take milk thistle, so I'm considering inositol or SAMe, which may also help with her OCD/anxiety. here's something on SAMe and the liver...My link

 

Philamom - FWIW - zith never helps with my sinus infections. I use ceftin or amox. - and remember to steal some probiotics from your child. Don't need a yeast infection on top of everything else

 

 

I'll check out that link, thanks. She takes supplements which include alpha lipoic acid and COQ10. We can double up on the clay, she is great with pills.

[laure]

Laura,

 

I feel for your situation and again this is only temporary backslide. I have read that 'short' course steroids can be fine for Lyme. BUT, as your daughter's best case manager its important to know when something isn't working no matter what a Dr. says. if you see improvement with the steroids then fantastic!!!! If she returns quickly to her prior baseline and/or a little worse.... they were of no help. Document well over these next two weeks.

 

There are a couple of homeopathic/prescription nasal medications that can help clear and protect. We've used Bactroban Nasal ointment and it is prescribed by our LLMD. Initially we used everyday prior to walking out the door to school. Now we use it once every three days. Or if were going to be in a social setting with a lot of kids. It decreases up 90% of infection coming in through nose. Hospital staff typically use for continual Merca exposure. You can also use Notatum Quentans Nasal Spray recommended by Jodie on the forum. We also spray this in our kids mouth.

 

The current combo of antibiotics is a lot. She is probably approaching her 4th week typically when Lyme flairs.... During this time period 28 to 34 days I would expect her to be worse and then 'slightly' better give or take a couple days. Improvement might only be one thing... but you'll have an intuitive feeling.

 

Double up on the bentonite pills if you can 20 pills = 1 cup and my son takes at least 1 1/2 cups per day. I know it sounds like a lot and I can only give our testimony but continued heavy detox has helped our son a lot.

 

I'd be on the phone making a follow-up appointment with Dr. Jones for another 5 weeks from now. He will either give you confidence to stay the course or make an antibiotic switch based on his best experience and her situation

 

Has Dr. B said anything about a potential IVIG as a possibility?

 

P.S. If you want to confirm she is still herxing from recent rotation. You can always stop antibiotics for 48 hours. This has been done by many of us. BUT, I'd wait to do this until you know effectiveness of steroid.

 

-Wendy

 

 

thanks for all of these suggestions Wendy. Can definitely double up on the detox. No Ivig mentioned, although that has been discussed in the past. She is pre-approved through BCBS for a year. We would rather wait until that is a later resort. Thanks for the reminder about documenting - with all the pill counting, I forget to write stuff down.

[philamom]

LLM- High dose Augmentin is usually what takes care of my sinus infections. I'm on the zith for something else. I've been taking Culturelle, and so far, no problems with yeast. Thanks for the reminder!

 

SF Mom- where can you purchase the Notatum Quentans Nasal Spray?