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Hi Faith,

 

My understanding is that there are several different strands of clostridium including c. diff. My dd's DAN doctor tested her through Great Plains Lab. You can do a stool test but he said it's kind of expensive. We did the MOAT test (Microbial Organic Acids Test urine test) - he said that is a cheaper way to test for clostridium (it tests for clostridium markers along with yeast and several other things). Yes, I think she is tolerating the Fluconazole now because we added the azith, however, my gut is telling me the Flagyl was our miracle medicine. I'm terrified of writing this because I have jinxed myself so many times in the past but her vocal tic (which is basically our only problem) has improved to where I can count the number of sounds she makes each day on 2 maybe 3 hands (so basically 10-15 times A DAY!!) Before the Flagyl, Azith and Fluconazole she was doing it every 5-10 seconds all day long. We were in that state for so long I started to not want to leave the house with her - it was horrible. She was on the Flagyl for 2 weeks - we stopped 5 days ago. Her dr said it affects the liver so you can't be on it longer than 2 weeks at a time. She's on s. boulardii now because it was recommended to me to help with clostridium. After we started the Flagyl it took about 5 days before we started seeing really noticable results. Flagyl was the first medicine my dd tried that didn't increase her tics or cause any die-off. I hope this helps.

 

Caring Mom

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Faith- We did the c-difficile stool tests thru Quest and our insurance covered it. Their Lab detected it three times so it must be pretty relaible. Though, I am now considering ordering the MOAT test to see my daughters markers. If I remember correctly, did you try Zithromax and have a poor response? We are on it now for the Lyme and have been dealing with increased symptoms---have in the past too when we tried it (always gave up after 10 days). It could be the Herx reaction because Zith is a Lyme treating abx. We also had a negative Quest Lyme test prior to us receiving the positive Igenex. Keep posting Faith and I hope today is a better day!

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I was thinking the same thing especially because the increase happened right around week 3 from start of the regimen. Faith, I'd keep investigating Lyme/co-infections via Igenex. My friends son test was negative for Lyme even though he came back positive for co-infections and they anticipate to 'draw' out a positive result for Lyme further into treatment.

 

Perhaps test yourself for Lyme to see if this isn't something you gave him while pregnant.

 

"However, a fetus exposed to Borrelia burgdorferi early in the pregnancy may never make an antibody response to the Lyme bacteria because the baby's immune system doesn't recognize it as foreign"

Edited by SF Mom
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Hi Faith,

 

My understanding is that there are several different strands of clostridium including c. diff. My dd's DAN doctor tested her through Great Plains Lab. You can do a stool test but he said it's kind of expensive. We did the MOAT test (Microbial Organic Acids Test urine test) - he said that is a cheaper way to test for clostridium (it tests for clostridium markers along with yeast and several other things). Yes, I think she is tolerating the Fluconazole now because we added the azith, however, my gut is telling me the Flagyl was our miracle medicine. I'm terrified of writing this because I have jinxed myself so many times in the past but her vocal tic (which is basically our only problem) has improved to where I can count the number of sounds she makes each day on 2 maybe 3 hands (so basically 10-15 times A DAY!!) Before the Flagyl, Azith and Fluconazole she was doing it every 5-10 seconds all day long. We were in that state for so long I started to not want to leave the house with her - it was horrible. She was on the Flagyl for 2 weeks - we stopped 5 days ago. Her dr said it affects the liver so you can't be on it longer than 2 weeks at a time. She's on s. boulardii now because it was recommended to me to help with clostridium. After we started the Flagyl it took about 5 days before we started seeing really noticable results. Flagyl was the first medicine my dd tried that didn't increase her tics or cause any die-off. I hope this helps.

 

Caring Mom

 

Okay, I hve the script for Flagyl, we saw the DAN today and even tho he didn't feel testing for clostridium was warranted or useful, he agreed to a trial of Flagyl, as this is what they use alongside the flucanazole for the yeast/biofilm regimen. (we were using Neomycin)....I suppose I could try to do the Great Plains test myself, but I may need a docs order for it. I think I will see what happens on the Flagyl. interestingly, I was giving s. boulardi for a while too, mainly because I was pointed toward clostridium a couple months back, and that is what started me on trying the yeast stuff. I'm sure I gave that more than a month on the s. boulardi, but I did give it on vacation too, but not everyday. who knows here how that plays into it. but I'm going to give this a try and see what happens. I am in exactly the same boat, he was going 3-5 seconds, in the house its worse, but wouldn't you know at the doc's he seemed minimal, so not sure what he's doing.

 

I got the DAN to do a swab and culture for strep just to humor me, and he opted to do yet another titer testing on him, even tho we've shown numerous times low titers, never significant. he does know thaqt strep can be asymptomatic tho, he does stress that it is not strep, but the antibodies that are the problem. of course, we all know this, but just wanted to mention that in case some have confusion.

 

thanks for your input mom, you've been a great help....

Edited by faith
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Faith- We did the c-difficile stool tests thru Quest and our insurance covered it. Their Lab detected it three times so it must be pretty relaible. Though, I am now considering ordering the MOAT test to see my daughters markers. If I remember correctly, did you try Zithromax and have a poor response? We are on it now for the Lyme and have been dealing with increased symptoms---have in the past too when we tried it (always gave up after 10 days). It could be the Herx reaction because Zith is a Lyme treating abx. We also had a negative Quest Lyme test prior to us receiving the positive Igenex. Keep posting Faith and I hope today is a better day!

 

Yes, we did azith and I felt he increased on that after a few days on it, I eventually stopped, I did not like the effect. Is azith what you are using for the Lyme? I hadn't heard that being Lyme treatent before? Interesing about the lyme results you have had. I'm going to see what this flagyl does and then may address the lyme again, but Western blot showed nothing. I think there was some testing on Dr. T's workup too, also negative, so basically I have nothing right now.

 

thanks so much for the input on the c.diff and flagyl, it gives me something to go on, ....If you don't mind my asking, how do you know the increase you are seeing is not from the ivig and not the azith? many here have symptoms ramp up in the weeks after ivig.....

 

 

thank

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I was thinking the same thing especially because the increase happened right around week 3 from start of the regimen. Faith, I'd keep investigating Lyme/co-infections via Igenex. My friends son test was negative for Lyme even though he came back positive for co-infections and they anticipate to 'draw' out a positive result for Lyme further into treatment.

 

Perhaps test yourself for Lyme to see if this isn't something you gave him while pregnant.

 

"However, a fetus exposed to Borrelia burgdorferi early in the pregnancy may never make an antibody response to the Lyme bacteria because the baby's immune system doesn't recognize it as foreign"

 

I suppose this is possible, but as I've said all roads to lyme are dead ended right now, I would hve to do the Igenex. after the Flagyl and hoping he settles a little, I will certainly keep investigating what I can. thanks.

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Oh Faith, I hope so much this works for you!! The s. boulardii might not have been able to touch the clostridium because I don't think it is nearly as strong as the Flagyl (I could be wrong though). My daughter had no signs of clostridia - no diarrhea or complaints of stomachaches. I was shcoked to see her levels were almost 6x the normal amount. My dr said there should be no die-off effect with the Flagyl and we didn't see any so hopefully the worst that can happen is that you don't see any results from it (I sure hope that's not the case). There is a stronger medicine called Vancomycin the my DAN doc said we could use if we don't see any results with the Flagyl. Good luck and keep us posted - I'll be thinking of you!!

 

Caring Mom

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Faith, I thought he wasn't on an antibiotic.... all natural remedies? You know Flagyl is an antibiotic used for Lyme treatment. Are you just starting the Flagyl? I swear its herxing.

 

-Wendy

 

I meant no abx for PANDAS purposes (azith, augmentin, etc.) we did use Neomycin in conjunction with the antifungal (flucanazole), as its supposed to target the bad bacteria. We didn't start the flagyl yet, but it is another abx that they use in the antifungal therapy, so the DAN said it would be fine to try it. I asked because of my lingering thoughts about clostridium and the fact that I had c.diff some years back. who knows really, but I felt it worth a try.

 

Are you saying you think the Neomycin caused herxing? what did you mean by I swear its herxing? If Flagyl is also used for Lyme, oh heavens, do you mean if its in there, I could see some herx? It would be a clue if that happened, but I have nothing re Lyme as of right now. He still has the sounds going, we have been out and about and he seems like he has more control when we're out, its not as constant, but definitely still there. I will know if it ramps up again. I hope I don't kick myself in the azz again after this,..... :mellow:

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Swear it was herxing from what you previously did.... Flagyl is used for Lyme and it will be interesting if you see if there is further herxing. How long is the prescription? Look for an uptick in symptoms in the third/fourth week 'worse before better concept'.

 

Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a

previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor

is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week

cycle of waxing and waning of symptoms, and improvement with therapy.

 

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

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I will ask.... I know for some being treated by Dr. Jones he has recommended stopping antibiotics for 48 hours to confirm herxing symptoms and then restart regimen and push through.

 

As you know my son has been treated very aggressively with both IVIG and antibiotics 'lyme like' protocol. 10 days ago we rotated antibiotics again and added Mesosilver which is considered a broad base natural antibiotic, prior to the change we had some great 100% days for almost a week..... over the last week, we've seen an increase in remaining symptoms: mood liability and a flair of TICS here and there. Just yesterday his mood improved dramatically and only one TIC was noticed. Today 'knock on wood' has been similar and have not noticed a TIC yet. So, it took almost a week for things to settle down. Because my son has been treated so aggressively I suspect his germ load/die off is minimal in comparison to others that are just starting the treatment process. Again, the sicker you are the worse the herxing response.

 

I have heard of HERXING VACATIONS.... where they cease treatment over the holidays so the individual can feel good enough to enjoy life a little.... So, it can be fairly bad.

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Faith- We did the c-difficile stool tests thru Quest and our insurance covered it. Their Lab detected it three times so it must be pretty relaible. Though, I am now considering ordering the MOAT test to see my daughters markers. If I remember correctly, did you try Zithromax and have a poor response? We are on it now for the Lyme and have been dealing with increased symptoms---have in the past too when we tried it (always gave up after 10 days). It could be the Herx reaction because Zith is a Lyme treating abx. We also had a negative Quest Lyme test prior to us receiving the positive Igenex. Keep posting Faith and I hope today is a better day!

 

Yes, we did azith and I felt he increased on that after a few days on it, I eventually stopped, I did not like the effect. Is azith what you are using for the Lyme? I hadn't heard that being Lyme treatent before? Interesing about the lyme results you have had. I'm going to see what this flagyl does and then may address the lyme again, but Western blot showed nothing. I think there was some testing on Dr. T's workup too, also negative, so basically I have nothing right now.

 

thanks so much for the input on the c.diff and flagyl, it gives me something to go on, ....If you don't mind my asking, how do you know the increase you are seeing is not from the ivig and not the azith? many here have symptoms ramp up in the weeks after ivig.....

 

 

thank

 

Because the increase is with her OCD/anxiety and in the past when we tried zith it was an increase of the same symptoms. After the IVIG my daughter becomes more hyper with periods of intense symptoms that come and go before it gets better. Right now she is less defiant, less opositional, better at critism, better at decision making, rarely any more rages...just more pleasant! This is from the IVIG! Since we started the zith (4 days after 2nd ivig) she has increased ocd and separation anxiety, afraid of vomiting/choking, more fearful.

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I will ask.... I know for some being treated by Dr. Jones he has recommended stopping antibiotics for 48 hours to confirm herxing symptoms and then restart regimen and push through.

 

As you know my son has been treated very aggressively with both IVIG and antibiotics 'lyme like' protocol. 10 days ago we rotated antibiotics again and added Mesosilver which is considered a broad base natural antibiotic, prior to the change we had some great 100% days for almost a week..... over the last week, we've seen an increase in remaining symptoms: mood liability and a flair of TICS here and there. Just yesterday his mood improved dramatically and only one TIC was noticed. Today 'knock on wood' has been similar and have not noticed a TIC yet. So, it took almost a week for things to settle down. Because my son has been treated so aggressively I suspect his germ load/die off is minimal in comparison to others that are just starting the treatment process. Again, the sicker you are the worse the herxing response.

 

I have heard of HERXING VACATIONS.... where they cease treatment over the holidays so the individual can feel good enough to enjoy life a little.... So, it can be fairly bad.

 

Wendy,what are you using for the lyme like protocol? what abx?

Of course now I'm a lttle worried, but if I had to go with my gut and bet on something, I don't think my guy has lyme, I mean I know the testing is not exactly accurate, but clinically, we are just tics and ocd, not as much other symptoms. I mean, he can't have everything.....now what you say abou tthe herxing, I read that it would be in the first week. I get what you say, that the herxing is like after about three weeks, then settles, then starts again? something like that? well, I backed off on the antifungal/neomycin and he did not settle, we were back home for a week and he was still going with his vocal tics every 5 seconds. DA

AN doc feels the die off would be in first week or so and that he should have setttled a little after stopping the antifungal. I don't know, this is such a CRAPshoot, :mellow: . I just have to decide if I should give the flagyl a try.

 

Smarty, good question, btw.

Edited by faith
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Our son is on both Azithromycin and Omnicef..... so a combo of antibiotic verses just one antibiotic. Yes the first herx response is 48 to 72 hours after the start of treatment but the bacteria has a 3 to 4 week growth cycle. So, when the bacteria tries to multiply and divide is when the majority of die off occurs (increasing symptoms). It can be hard to establish sometimes if there is more than one infection.

 

I'd give the Flagyl a try before the steroid shots..... If you notice an increase in symptoms I suspect herxing but to 'what' is the question. One thing that is specifically mentioned in the online interview with Dr. Harris regarding Lyme symptoms and children is their ability to thrive physically. If I remember correctly your son is underweight. I recommend you watch the video... its an hour but worth watching. http://www.ilads.org/lyme_disease/lyme_videos_1_d.html

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