Vancomycin

[Stephanie2]

I was asked to post regarding our experience with using vancomycin when OCD flares, instead of the other standard abx for pandas. The reason for the use of vancomycin would be to kill clostridia (or other gut bacteria which come about due to the chronic abx use for strep).

 

Both of my boys, age 2 and 5, have improved dramatically on vancomycin at times. They have each tested positive for clostridia in the past. Now, when we suspect clostridia we just treat rather than test. If vanco clears the OCD, then we know it is not strep. How do we know this? Because the vancomycin which is given orally is not absorbed through the gut into the body. It only kills the pathogens in the gut. An exception to this assumption would be if the strep is coming from the gut. Vanco will not kill strep in the throat.

 

I will come back in a few days as we are embarking on yet another round of vanco for both boys for clostridia!

 

Any other experiences with this?

 

BTW, our DAN says that clostridia also causes tics and sensory issues. Really mimicks strep. In my experience, though, my boys do NOT get separation anxiety with clostridia.

[Priscilla]

Could you elaborate on the clostridia causing tics.... Is there any link to the OCD aspect?? Any resources to look further into this ?? thanks

[Priscilla]

oops sorry, just noticed you are treating for OCD. Was this dx through a stool sample??

[Stephanie2]

oops sorry, just noticed you are treating for OCD. Was this dx through a stool sample??

 

This was diagnosed through a urine test called Organic Acids Test (OAT). Also, our DAN can usually tell clostridia by behavioral symptoms and by stool color, texture, smell (for my 2 yo it is light brown/yellow, very smelly and diarrhea-like. my 5yo's stool does not always change, I guess it's different for each kid).

 

OAT test - Great Plains Labs

 

The other way you know it's clostridia is if there is a major die-off or herx reaction when you start the antibiotic. Augmentin can also kill some forms of clostridia (not as effectively as flagyl or vanco). I have seen my son go into a kind of rage within a couple of hours when starting augmentin before, a type of behavior that was not indicative of strep. Then over a period of days he gets better.

 

Our DAN also said that when there is clostridia, you will see the behavioral symptoms come back much faster after discontinuing abx than you will with strep or other bacteria (expecially if the abx was not effective at killing the clostridia).

 

Clostridia is very, very, very hard to get rid of and may need multiple rounds of vanco or flagyl, then followed up with special probiotics that target clostridia (culturelle and Saccharomyces Boulardii) to keep it away.

 

After learning about this and finding that vanco gets my kids better much of the time, it makes me wonder how many of us are really battling clostidia instead of strep half the time (could be the reason high dose augmentin works so well for some). By the way, zithromax would make clostidia worse...if someone starts failing miserably on zithro, development of clostridia should be investigated (or strep that is azith resistant, of course).

[trggirl]

Thank you for posting! I am looking forward to hearing how your boys are doing.

[philamom]

oops sorry, just noticed you are treating for OCD. Was this dx through a stool sample??

 

This was diagnosed through a urine test called Organic Acids Test (OAT). Also, our DAN can usually tell clostridia by behavioral symptoms and by stool color, texture, smell (for my 2 yo it is light brown/yellow, very smelly and diarrhea-like. my 5yo's stool does not always change, I guess it's different for each kid).

 

OAT test - Great Plains Labs

 

The other way you know it's clostridia is if there is a major die-off or herx reaction when you start the antibiotic. Augmentin can also kill some forms of clostridia (not as effectively as flagyl or vanco). I have seen my son go into a kind of rage within a couple of hours when starting augmentin before, a type of behavior that was not indicative of strep. Then over a period of days he gets better.

 

Our DAN also said that when there is clostridia, you will see the behavioral symptoms come back much faster after discontinuing abx than you will with strep or other bacteria (expecially if the abx was not effective at killing the clostridia).

 

Clostridia is very, very, very hard to get rid of and may need multiple rounds of vanco or flagyl, then followed up with special probiotics that target clostridia (culturelle and Saccharomyces Boulardii) to keep it away.

 

After learning about this and finding that vanco gets my kids better much of the time, it makes me wonder how many of us are really battling clostidia instead of strep half the time (could be the reason high dose augmentin works so well for some). By the way, zithromax would make clostidia worse...if someone starts failing miserably on zithro, development of clostridia should be investigated (or strep that is azith resistant, of course).

Why do you think Zithromax would make clostidia worse? My daughter's Immunologist feels zith is the safest abx for her to be on because of her history of 3 c-diff infections. Lyme should also be considered if you have an increase of symptoms when starting zith due to herxing (zith is one of the abxs use for treatment). Thanks- Melinda

Edited September 4, 2010 by philamom

[Priscilla]

Thank you. The rage is definitely and issue for us. Zith was horrible, just really upset her stomach. We are now on Augmentin, switching to xr today. I am intrigued because I have always thought there wasn't an active strep infection (elevated ASO though). Her naturopath seems to think there is no active infection, but was very concerned about gastrointestinal system. HMMMM! makes me think. Thanks so much

[matis_mom]

I was asked to post regarding our experience with using vancomycin when OCD flares, instead of the other standard abx for pandas. The reason for the use of vancomycin would be to kill clostridia (or other gut bacteria which come about due to the chronic abx use for strep).

 

Both of my boys, age 2 and 5, have improved dramatically on vancomycin at times. They have each tested positive for clostridia in the past. Now, when we suspect clostridia we just treat rather than test. If vanco clears the OCD, then we know it is not strep. How do we know this? Because the vancomycin which is given orally is not absorbed through the gut into the body. It only kills the pathogens in the gut. An exception to this assumption would be if the strep is coming from the gut. Vanco will not kill strep in the throat.

 

I will come back in a few days as we are embarking on yet another round of vanco for both boys for clostridia!

 

Any other experiences with this?

 

BTW, our DAN says that clostridia also causes tics and sensory issues. Really mimicks strep. In my experience, though, my boys do NOT get separation anxiety with clostridia.

Hi Stephanie,

DS12 was on in about a year ago for strep in the gut. I still have some left since the dose was very minimal, like 1/2 capsule every other day, and we had to work up to that dose. How much do your boys get?

Isabel

[Phasmid]

While I never found anything in the literature regarding symptoms and Clostridium difficile (there are a few case studies of patients who had sudden onset OCD and tics following an infection with Mycoplasma pneumoniae), my son had a clear association between PANDAS symptoms, positive Clostridium difficile (toxin assay from stool sample), and resolution of symptoms with Flagyl and Vancocyn (vancomycin). He DOES have a lengthy history of Strep pharyngitis, as well as probable Mycoplasma pneumoniae about the time the last episode occured, based on very highly elevated IgG to Mp. So, our scenario was very muddied. When he was treated with flagyl and vancomycin for Clostridium difficile, his PANDAS symptoms resolved very quickly. With some recent recurrence of behavior and ocd, he was treated with biaxin, azithromycin, and 30 day taper of prednisone. He is well at this time.

[Stephanie2]

oops sorry, just noticed you are treating for OCD. Was this dx through a stool sample??

 

Why do you think Zithromax would make clostidia worse? My daughter's Immunologist feels zith is the safest abx for her to be on because of her history of 3 c-diff infections. Lyme should also be considered if you have an increase of symptoms when starting zith due to herxing (zith is one of the abxs use for treatment). Thanks- Melinda

 

Well, if you already have some clostridia then any abx will make it worse, unless it is an abx that targets clostridia. If you don't have clostridia or other gut issues, then yes I have heard that azith is a good one. I'm not sure why, maybe b/c it is not dosed as often as the others so it spends less time in the gut killing the good guys off...? That's a good point that lyme could cause herxing with azith, but that would happen right away, not later on in the course of treatment (I'm guessing).

 

 

 

Hi Stephanie,

DS12 was on in about a year ago for strep in the gut. I still have some left since the dose was very minimal, like 1/2 capsule every other day, and we had to work up to that dose. How much do your boys get?

Isabel

They get 125mg, 3x/day.

 

 

While I never found anything in the literature regarding symptoms and Clostridium difficile (there are a few case studies of patients who had sudden onset OCD and tics following an infection with Mycoplasma pneumoniae), my son had a clear association between PANDAS symptoms, positive Clostridium difficile (toxin assay from stool sample), and resolution of symptoms with Flagyl and Vancocyn (vancomycin). He DOES have a lengthy history of Strep pharyngitis, as well as probable Mycoplasma pneumoniae about the time the last episode occured, based on very highly elevated IgG to Mp. So, our scenario was very muddied. When he was treated with flagyl and vancomycin for Clostridium difficile, his PANDAS symptoms resolved very quickly. With some recent recurrence of behavior and ocd, he was treated with biaxin, azithromycin, and 30 day taper of prednisone. He is well at this time.

Phasmid, was your child on flagyl and vancomycin at the same time? Is that b/c the clostridia kept coming back? How did you eventually get rid of the clostridia? We can't seem to get rid of it for good. we stop the abx and it comes back! And they are on 1 trillion cfu's of probiotics a day!

 

Also, why did you recently do biaxin and azith? We resolved my ds2's ocd with a pred taper, but today he tested positive for strep, so we are back to square one...ugh!!

 

 

Anyway, I said I would come back and post regarding how my boys are now doing on vancomycin. They both got better within 3-4 days (OCD 100% resolved), however, I just found out this morning that we have strep in the house, so back to regular abx!

[Erica M]

I actually drank the Vancomycin in IV fluid form to treat recurrent and ugly C. Diff infection. Worked great, tasted terrible though. Also, for anyone wanting to test for C.diff, you have to make them take the stool sample to the lab immediately. I am a veteran and this one I know all too well about. C. Diff by definition is "difficult to culture". The cells they need to test die off very quickly and not all medical staff seem to know that. It took an infectious disease nurse to get it right. Hope that helps anyone dealing with it!

Edited September 8, 2010 by Erica M

[philamom]

I actually drank the Vancomycin in IV fluid form to treat recurrent and ugly C. Diff infection. Worked great, tasted terrible though. Also, for anyone wanting to test for C.diff, you have to make them take the stool sample to the lab immediately. I am a veteran and this one I know all too well about. C. Diff by definition is "difficult to culture". The cells they need to test die off very quickly and not all medical staff seem to know that. It took an infectious disease nurse to get it right. Hope that helps anyone dealing with it!

 

Erica-

Thank you for sharing this with us. Can you give more info. on how you got c-diff and why its become recurrent? How are you now? Did you do lab testing through a dan doctor or a lab like Quest? My dd9 had 3 c-diff infections. First one in 06 was treated with flagyl, second one in 07 was treated with Vancomycin, and third one in May treated again with flagyl.

Melinda

[philamom]

Stephanie 2- what regular abx are you using for the new strep infection? Melinda

[Fixit]

While I never found anything in the literature regarding symptoms and Clostridium difficile (there are a few case studies of patients who had sudden onset OCD and tics following an infection with Mycoplasma pneumoniae), my son had a clear association between PANDAS symptoms, positive Clostridium difficile (toxin assay from stool sample), and resolution of symptoms with Flagyl and Vancocyn (vancomycin). He DOES have a lengthy history of Strep pharyngitis, as well as probable Mycoplasma pneumoniae about the time the last episode occured, based on very highly elevated IgG to Mp. So, our scenario was very muddied. When he was treated with flagyl and vancomycin for Clostridium difficile, his PANDAS symptoms resolved very quickly. With some recent recurrence of behavior and ocd, he was treated with biaxin, azithromycin, and 30 day taper of prednisone. He is well at this time.

 

was he on vanco and flagyl at the same time????

Edited September 8, 2010 by Fixit

[Erica M]

I actually drank the Vancomycin in IV fluid form to treat recurrent and ugly C. Diff infection. Worked great, tasted terrible though. Also, for anyone wanting to test for C.diff, you have to make them take the stool sample to the lab immediately. I am a veteran and this one I know all too well about. C. Diff by definition is "difficult to culture". The cells they need to test die off very quickly and not all medical staff seem to know that. It took an infectious disease nurse to get it right. Hope that helps anyone dealing with it!

 

Erica-

Thank you for sharing this with us. Can you give more info. on how you got c-diff and why its become recurrent? How are you now? Did you do lab testing through a dan doctor or a lab like Quest? My dd9 had 3 c-diff infections. First one in 06 was treated with flagyl, second one in 07 was treated with Vancomycin, and third one in May treated again with flagyl.

Melinda

 

Sure,, glad to help. I had a C-section in April of 2008. Shortly afterward, I developed a kidney infection and was given a broad spectrum AB. Im not sure which one it was though. Id say it was a few weeks later I started the 50 bathroom trips a day. I went to the hospital thinking I just had a stomach bug. I was told it would pass. Grayson developed similar symptoms but his passed, which made me believe it was in fact a bug. After a while, C.Diff took its course, couldnt digest food, fever of 103. etc. I went back to the doctor and was sent to a GI specialist. Unfortunately for me, he was taught that only ppl in nursing homes get C.diff (right...)He did treat me with flagyl for a week though, to no avail. So it went on for a long time, Im sure thats why it became recurrent. One morning at 4 am I got out of bed, lost control of my bowels and passed out. My husband called 911. I had a fever of 103.9 and the BP of a corpse. After being seen in the ER by their gracious doctor I was told I had a stomach bug. ..... My nurse happened to be from the infectious disease floor. After I came out of the bathroom, the nurse had brought the Dr back in and informed him that she didnt need a stool sample to know 100% that I had C.diff. (For those that do not know- c diff stools have a very distinct smell. Ive youve ever been in a barn or horse stock, thats what I compare it to. Also, once youve had it a while, your stools pretty much become puss and blood, graphic Im sorry) He informed her that Id had a stool sample done recently, but she fought for me and had me give her another that she ran down to the lab herself. Ta-Dah- positive. Since Id been on Flagyl a few times with no relief I was given a script for Vanco. At the time I had crummy insurance that would not pay *(vanco pills are very expensive) so the pharmacist recommended drinking IV Vanco which was alot more affordable. It took a month before I really felt better. I have had several flare-ups(6+) and every time Ive done the IV Vanco. Im not 100% that Grayson had C.Diff but once youve smelled it, its unmistakable. Im just glad he fought it off well. I was in pretty bad shape after a c-section, colicy baby, and then a kidney infection. I think all of those played a part in the severity and recurrence of the infection. I was warned however, that should I really need strong ABs one day that they may not work because of the repeated Vanco use. But- Im pretty sure I would have eventually died without it though. I know theres alot of antibiotic related C.Diff out there. However you have to fight one monster at a time. Gray and I both take Probotics and vitamins, extra vitamin C! I had stool testing done at a few different facilities and the actual GI specialist was the one I would have thought would know how to test properly. But no, it was a nurse in the ER. The most important thing I can tell you is in order to start treatment as soon as possible and avoid the ###### I went through is-- Make sure the stool is tested immediately! No bring in back in the containers in the morning, has to be fresh