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How long should we wait before deciding if ABX are helping?


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Our son developed sudden onset of tics and mild OCD in Feb 08. We have been messing around with one doc after another and one wild goose chase after another ever since trying to solve the mystery. We finally connected with Dr T recently and learned through blood tests he ordered that our son is negative for strep titers (in spite of 5 strep infections diagnosed and treated using the rapid swab, most recently in May 2011). We also learned that his Mycoplasma Pneumoniae IGG is positive/high at 321. Tests were done at LabCorp.

 

Dr T believes our son is a low strep responder (due to the lack of positive titers) and that he has a chronic mycoplasma pneumoniae (MP) infection. Our son is now on two different ABX:

- He takes Cephalexin (1000 mg daily) because he responded so well to treatment doses of it during acute strep infections in the past. He's been on the Cephalexin for about 3.5 weeks and I don't think it's made much of a difference this time.

- Dr T also prescribed Clarythromycin (i.e., Biaxin) (500 mg daily) for the MP. He's been on it for for 8 days now.

 

Concerning the Biaxin, we thought we were starting to see some lessening in the severity and quantity of the tics on day 3 and 4. Day 5 we saw a small setback. Day 6 was a mixed bag. On day 7 and 8 (today) we have had still more setbacks. We aren't *quite* back to where we started, but it is a discouraging trend.

 

My question is this: for those who have used ABX (Azithromycin, Clarithromycin, ...) to treat positive Mycoplasma Pneumonia IGG, how long did it take for you to see any real level of improvement?

 

I don't want to give up too soon, but I also don't want to waste any more time if we are on another dead-end path.

 

Thank you for your help.

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When we were just beginning Treatment I had the same question. The progress tends to bre slow and gradual - sometimes hard to see day to day. Often The progress resembles a saw tooth pattern.

 

Based on the advice of many members on this forum I started rating PANDAS behaviors daily. For my ds I rate germ contamination, rages, mood, attention, repetitive questions, memory. For my dd I rate separation anxiety, clothing, rages, attention, sleep. Many smart phones have free aps to track symptoms.

 

However - to answer your question more specifically - I would say it took weeks to see small improvements.

 

Hope that helps:)

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Both of my girls recovered from their initial episode with antibiotics. It took one month of full strength antibiotics. Frankly, we saw most of the improvement in that fourth week.

 

Subsequent episodes have taken more aggressive approaches.

 

I would certainly give antibiotics a month, but probably would look for something else if you have not seen constant or significant improvement.

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I still wonder why our pandas "specialist" didn't look for something else after a month. We switched from treatment dose of Augmentin (1 month...no improvement) to low dose zith (non treatment dose), and saw no improvement...and did that for 8 months till she got strep WHILE on the zithromax and had a worsening. I think it depends on the specialist.....for ours, she only goes for plan B if the child is debilitated. So honestly, what I recommend, is pick what treatment YOU want, then find the doctor who will do it. NOT that I am a big fan of us parents having to make those decisions. We still haven't been able to feel comfortable with that duty.

 

Since this started in 2008, has there been any improvement from antibiotics at any time, or did your child continue with symptoms?

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Mycoplasma can release toxins when they're killed. Those toxins can cause a worsening of symptoms. It's called a herxheimer response. Scarlet fever is a rash caused by toxins released from dying strep bacteria - in a sense, a mild herx response.

 

So the worsening you're seeing may be a herx rather than a failure of the abx. As others suggest, rate each day and watch the trend. My son's worst episodes took 8-10 weeks to resolve (but he has more than Pandas going on).

 

One thing you can do to lessen a herx response is to help the body get rid of those toxins. The faster the body can detox, the faster it can feel better (assuming that this is a herx and the abx are doing their job). For the liver, you can look into milk thistle (do not use if allergic to ragweed and do your own research - this is not a universal supplement for everyone). To help the gut get rid of toxins, you can use activated charcoal (5-10 pills) or bentonite clay (sold as a liquid - take 1-2 tsp to start or in capsules - take 5-10). Charcoal and clay should be taken at bedtime (to sit in the gut overnight), at least 2-3 hrs away from any other meds (or the meds will get soaked up). My son becomes more regular on clay, my daughter gets a little constipated. So she takes a few capsules of pysillium husk to clean the pipes. You're looking for 1-3 BMs a day to get those toxins out. Water, or water with lemon, is always a great way to help flush the kidneys. Some kids like epsom salt baths (maybe 1 cup in warm tub). Sometimes you'll see small bumbs/pimples emerge on the backs of the arms and legs after a few baths, as toxins work their way out through the skin. Exercise/sweat can help too.

 

I know it's hard to watch your child struggle. But I personally would give the abx more time - myco is not a quick fix. Some have treated for 8-12 months. It would be far worse to stop too soon and then have the bacteria be resistant to those abx later on. Sometimes rotating the abx combo helps. But doing some detox may help your son feel better while his body does battle.

 

Since it sounds like he's also prone to infections, you may want to consider running some mineral/vitamin blood work. Zinc, D, B6, magnesium - all play a role in the immune system. Supplementing, with some blood work to show what may be needed, might help.

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bsimon-

 

a couple of thoughts....

 

Try to evaluate progress weekly, rather than daily. Healing is somewhat sawtoothed, IMHO, but you should see a positive trend.

 

Dr T is a great guy. He will be open to trying different things, I think you just have to keep on him- if this is not working, ask him what to try next.

 

I know very little about Myco. From what I do know, I think, it is very hard to have a read on what is really going on with titers. It is hard to know if there is a current infection, past infection, etc.

 

We have found with our kids, and this would only apply if you are fairly certain you are dealing with pandas, and there is no immune deficiency, etc- that we only need to do what is reasonable to get the infection, but the key for us is stopping the autoimmunity. So- we had strep, and used clindamycin to treat for 10 days (this is a very aggressive "carrier' state treatment, yet it is something totally accepted by mainstream science.). After this, we had to stop the autoimmunity with steroids. It was after the strep that my kids started ramping up into a full blown episode, it was the steroids that turned this around, not the antibiotics.

 

We have also found that therapy is necessary to resolve the residual ocd, sometimes.

 

From my experience, in PANDAS, the autoimmunity is the key. I would not wait around for months trying to fight an infection. If you think it is myco p, or strep- find the most aggressive antibiotic you can for those bacteria- and then move to tamping down the immune system. I think Dr T can be a major help with your kids- I know he has with mine- he is opinionated, yet open minded. However, I do think sometimes he (and other docs) need to be reminded that it is not acceptable for your son to go on this way.

 

Hang in there.

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I still wonder why our pandas "specialist" didn't look for something else after a month. We switched from treatment dose of Augmentin (1 month...no improvement) to low dose zith (non treatment dose), and saw no improvement...and did that for 8 months till she got strep WHILE on the zithromax and had a worsening. I think it depends on the specialist.....for ours, she only goes for plan B if the child is debilitated. So honestly, what I recommend, is pick what treatment YOU want, then find the doctor who will do it. NOT that I am a big fan of us parents having to make those decisions. We still haven't been able to feel comfortable with that duty.

 

Since this started in 2008, has there been any improvement from antibiotics at any time, or did your child continue with symptoms?

 

Since this all started in 2008, we saw a worsening of tics and other PANDAS/PITAND symptoms the times he tested positive for strep in the office (as well as during other times of illness) and then an improvement while on the antibiotics. Amox worked the first time to clear the strep and the other 4 times we had to use cephalexin to clear up the strep throat. He's now been on the cephalexin for 3.5 weeks and it doesn't seem to be helping the tics, etc. And of course now we are on Day 9 of the clarithromycin as well.

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bsimon-

 

a couple of thoughts....

 

Try to evaluate progress weekly, rather than daily. Healing is somewhat sawtoothed, IMHO, but you should see a positive trend.

 

Dr T is a great guy. He will be open to trying different things, I think you just have to keep on him- if this is not working, ask him what to try next.

 

I know very little about Myco. From what I do know, I think, it is very hard to have a read on what is really going on with titers. It is hard to know if there is a current infection, past infection, etc.

 

We have found with our kids, and this would only apply if you are fairly certain you are dealing with pandas, and there is no immune deficiency, etc- that we only need to do what is reasonable to get the infection, but the key for us is stopping the autoimmunity. So- we had strep, and used clindamycin to treat for 10 days (this is a very aggressive "carrier' state treatment, yet it is something totally accepted by mainstream science.). After this, we had to stop the autoimmunity with steroids. It was after the strep that my kids started ramping up into a full blown episode, it was the steroids that turned this around, not the antibiotics.

 

We have also found that therapy is necessary to resolve the residual ocd, sometimes.

 

From my experience, in PANDAS, the autoimmunity is the key. I would not wait around for months trying to fight an infection. If you think it is myco p, or strep- find the most aggressive antibiotic you can for those bacteria- and then move to tamping down the immune system. I think Dr T can be a major help with your kids- I know he has with mine- he is opinionated, yet open minded. However, I do think sometimes he (and other docs) need to be reminded that it is not acceptable for your son to go on this way.

 

Hang in there.

 

Thanks dcmom, this is very helpful. Am I understanding correctly that in your case, you did not do long treatments of ABX but instead were dealing with acute infections with a treatment course of 10 days or so? Then when that was over and finished only then moved on to a steroid burst? I don't know much about steroids yet... does anyone use steroids and ABX at the same time? Thanks in advance.

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Mycoplasma can release toxins when they're killed. Those toxins can cause a worsening of symptoms. It's called a herxheimer response. Scarlet fever is a rash caused by toxins released from dying strep bacteria - in a sense, a mild herx response.

 

So the worsening you're seeing may be a herx rather than a failure of the abx. As others suggest, rate each day and watch the trend. My son's worst episodes took 8-10 weeks to resolve (but he has more than Pandas going on).

 

One thing you can do to lessen a herx response is to help the body get rid of those toxins. The faster the body can detox, the faster it can feel better (assuming that this is a herx and the abx are doing their job). For the liver, you can look into milk thistle (do not use if allergic to ragweed and do your own research - this is not a universal supplement for everyone). To help the gut get rid of toxins, you can use activated charcoal (5-10 pills) or bentonite clay (sold as a liquid - take 1-2 tsp to start or in capsules - take 5-10). Charcoal and clay should be taken at bedtime (to sit in the gut overnight), at least 2-3 hrs away from any other meds (or the meds will get soaked up). My son becomes more regular on clay, my daughter gets a little constipated. So she takes a few capsules of pysillium husk to clean the pipes. You're looking for 1-3 BMs a day to get those toxins out. Water, or water with lemon, is always a great way to help flush the kidneys. Some kids like epsom salt baths (maybe 1 cup in warm tub). Sometimes you'll see small bumbs/pimples emerge on the backs of the arms and legs after a few baths, as toxins work their way out through the skin. Exercise/sweat can help too.

 

I know it's hard to watch your child struggle. But I personally would give the abx more time - myco is not a quick fix. Some have treated for 8-12 months. It would be far worse to stop too soon and then have the bacteria be resistant to those abx later on. Sometimes rotating the abx combo helps. But doing some detox may help your son feel better while his body does battle.

 

Since it sounds like he's also prone to infections, you may want to consider running some mineral/vitamin blood work. Zinc, D, B6, magnesium - all play a role in the immune system. Supplementing, with some blood work to show what may be needed, might help.

 

LLM, thank you for all the information. This gives me a lot to look into as I must admit my experience with the types of treatments for detoxification you mentioned is quite limited and therefore out of my comfort zone. I will read up on all of that however. If you have a favorite resource to refer me to, I'd love to hear about it.

 

Your post has me wondering about other signs of toxic load on the body. In the past when he seemed so sick from time to time and we didn't know what was wrong, he had telling dark circles under the eyes -- we just didn't know what they were telling us! We've seen the dark circles come & go again over this past week while on the Biaxin. Do you know if that has anything to do with any of this?

 

As far as the minerals/vitamins you mentioned, the only one we have had measured so far is D and his is 61.3 (optimal range 32-100 according to LabCorp). We do supplement him with D3, B6, and magnesium among others. Still, I like your idea about measuring the immune-related vitamins & minerals and will request adding that to his inevitable next round of blood work.

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When we were just beginning Treatment I had the same question. The progress tends to bre slow and gradual - sometimes hard to see day to day. Often The progress resembles a saw tooth pattern.

 

Based on the advice of many members on this forum I started rating PANDAS behaviors daily. For my ds I rate germ contamination, rages, mood, attention, repetitive questions, memory. For my dd I rate separation anxiety, clothing, rages, attention, sleep. Many smart phones have free aps to track symptoms.

 

However - to answer your question more specifically - I would say it took weeks to see small improvements.

 

Hope that helps:)

 

Thanks NVAmom for the helpful and encouraging reply. We also track his particular list of symptoms. We use a spreadsheet and since starting it in August, have found that it provides perspective and a more accurate look at how things are trending. It's not perfect, but it beats having to rely on memory alone!

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So when you say "worsening" and "improvement" of tics, are they always there since onset, but just at better or worse levels, or do antibiotics totally get rid of them?

 

I still wonder why our pandas "specialist" didn't look for something else after a month. We switched from treatment dose of Augmentin (1 month...no improvement) to low dose zith (non treatment dose), and saw no improvement...and did that for 8 months till she got strep WHILE on the zithromax and had a worsening. I think it depends on the specialist.....for ours, she only goes for plan B if the child is debilitated. So honestly, what I recommend, is pick what treatment YOU want, then find the doctor who will do it. NOT that I am a big fan of us parents having to make those decisions. We still haven't been able to feel comfortable with that duty.

 

Since this started in 2008, has there been any improvement from antibiotics at any time, or did your child continue with symptoms?

 

Since this all started in 2008, we saw a worsening of tics and other PANDAS/PITAND symptoms the times he tested positive for strep in the office (as well as during other times of illness) and then an improvement while on the antibiotics. Amox worked the first time to clear the strep and the other 4 times we had to use cephalexin to clear up the strep throat. He's now been on the cephalexin for 3.5 weeks and it doesn't seem to be helping the tics, etc. And of course now we are on Day 9 of the clarithromycin as well.

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Our son developed sudden onset of tics and mild OCD in Feb 08. We have been messing around with one doc after another and one wild goose chase after another ever since trying to solve the mystery. We finally connected with Dr T recently and learned through blood tests he ordered that our son is negative for strep titers (in spite of 5 strep infections diagnosed and treated using the rapid swab, most recently in May 2011). We also learned that his Mycoplasma Pneumoniae IGG is positive/high at 321. Tests were done at LabCorp.

 

Dr T believes our son is a low strep responder (due to the lack of positive titers) and that he has a chronic mycoplasma pneumoniae (MP) infection. Our son is now on two different ABX:

- He takes Cephalexin (1000 mg daily) because he responded so well to treatment doses of it during acute strep infections in the past. He's been on the Cephalexin for about 3.5 weeks and I don't think it's made much of a difference this time.

- Dr T also prescribed Clarythromycin (i.e., Biaxin) (500 mg daily) for the MP. He's been on it for for 8 days now.

 

Concerning the Biaxin, we thought we were starting to see some lessening in the severity and quantity of the tics on day 3 and 4. Day 5 we saw a small setback. Day 6 was a mixed bag. On day 7 and 8 (today) we have had still more setbacks. We aren't *quite* back to where we started, but it is a discouraging trend.

 

My question is this: for those who have used ABX (Azithromycin, Clarithromycin, ...) to treat positive Mycoplasma Pneumonia IGG, how long did it take for you to see any real level of improvement?

 

I don't want to give up too soon, but I also don't want to waste any more time if we are on another dead-end path.

 

Thank you for your help.

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I would give the Biaxin a month. When we put our son on Augmentin and Azith, he herxed for a few weeks before settling down and beginning what has been an amazing response to treatment (this, after 2 years of illness and the past year extreme and at times debilitating illness). Definitely do NOT give up after only a couple of weeks - it may just be his body reacting to the toxins released by the abx killing the bad stuff (to put it simply). Hang in there!

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LLM, thank you for all the information. This gives me a lot to look into as I must admit my experience with the types of treatments for detoxification you mentioned is quite limited and therefore out of my comfort zone. I will read up on all of that however. If you have a favorite resource to refer me to, I'd love to hear about it.

 

Your post has me wondering about other signs of toxic load on the body. In the past when he seemed so sick from time to time and we didn't know what was wrong, he had telling dark circles under the eyes -- we just didn't know what they were telling us! We've seen the dark circles come & go again over this past week while on the Biaxin. Do you know if that has anything to do with any of this?

 

As far as the minerals/vitamins you mentioned, the only one we have had measured so far is D and his is 61.3 (optimal range 32-100 according to LabCorp). We do supplement him with D3, B6, and magnesium among others. Still, I like your idea about measuring the immune-related vitamins & minerals and will request adding that to his inevitable next round of blood work.

Milk Thistle is well studied. You can find research on PubMed. Here's a good overview:

http://books.google.com/books?id=J4TFtQeHkQAC&pg=PA174&dq=lyme+milk+thistle&hl=en&ei=-amWTuD5OIS2tgel09WIBA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CEsQ6AEwAA#v=onepage&q=lyme%20milk%20thistle&f=false

For charcoal info:

http://www.alsearsmd.com/activated-charcoal-the-detoxifier-found-in-every-emergency-room/

Charcoal can be found in any pharmacy or health food store.

Clay is similar to charcoal. Some moms feel it works better. You can find it easily in health food stores as a liquid. For capsules, try: http://www.uniquehealing.com/unique-healing-store/unique-healing-body-bentonite-capsules/

 

Regarding the dark circles under the eyes, lots of parents have discussed them. Could be histamine, could be general illness, could be sinus. It's also one of the symptoms of pyroluria (a zinc/B6 issue).

 

I think a mineral/vitamin workup is a good start (pyroluria can't be detected this way - it's a urine test from a specialty lab). But bear in mind that some minerals, like magnesium, act primarily within the cell. A blood test measures the level outside of the cell. So the extracellular level could be fine but you could need a supplement to amount available intracellularly. It's one of those tests where a deficiency is telling. But a normal result could be normal or could be meaningless. Fun, right?

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