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does anyone have any info or thoughts on a herx reaction having any relationship to opening the BBB? it seems to me, that the docs are heading in the direction that the BBB is a key factor. as kara posted earlier, Dr. Leckman suggested general stress could cause opening.

 

i am having trouble understanding the reaction in general -- it's a flood of toxins produced by the dying bacteria, right? i recently heard a LLMD say that the spirochete is the only known bacteria to produce a herx reaction. i was curious about that and someone pointed out to me the use of the word known.

 

pre-pandas, i had only heard it used in relation to yeast treatment and being toxins produced when the yeast die. i'd only heard of it as a flu like situation.

 

my son seems to be having a herx due to an addition of a viral med with exacerbation of usual behaviors last week, which went away, and some OCD stuff we've never seen before. do viruses also produce toxins when they die?

 

could the herx reaction affect the BBB and we see symptoms of existing antibodies crossing it and causing symptoms?

 

i'd appreciate any thoughts!!! thanks.

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I have wondered about this as well. I hope someone chimes in. I understand how yeast or bacteria could cause herx reaction but dont understand how this relates to antibodies dying off.

 

 

 

does anyone have any info or thoughts on a herx reaction having any relationship to opening the BBB? it seems to me, that the docs are heading in the direction that the BBB is a key factor. as kara posted earlier, Dr. Leckman suggested general stress could cause opening.

 

i am having trouble understanding the reaction in general -- it's a flood of toxins produced by the dying bacteria, right? i recently heard a LLMD say that the spirochete is the only known bacteria to produce a herx reaction. i was curious about that and someone pointed out to me the use of the word known.

 

pre-pandas, i had only heard it used in relation to yeast treatment and being toxins produced when the yeast die. i'd only heard of it as a flu like situation.

 

my son seems to be having a herx due to an addition of a viral med with exacerbation of usual behaviors last week, which went away, and some OCD stuff we've never seen before. do viruses also produce toxins when they die?

 

could the herx reaction affect the BBB and we see symptoms of existing antibodies crossing it and causing symptoms?

 

i'd appreciate any thoughts!!! thanks.

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The best explanation I've been able to find.

 

The Herxheimer Reaction - Feeling worse before feeling better

 

The Herxheimer Reaction is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms.

 

This is a normal — and even healthy — reaction that indicates that parasites, fungus, viruses, bacteria or other pathogens are being effectively killed off. The biggest problem with the Herxheimer reaction is that people stop taking the supplement or medication that is causing the reaction, and thus discontinue the very treatment that is helping to make them better. Although the experience may not make you feel particularly good, the Herxheimer Reaction is actually a sign that healing is taking place.

 

What Is The Herxheimer Reaction?

 

The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.

 

A Rose By Any Other Name

 

Technically known as the Jarisch-Herxheimer Reaction, this syndrome goes by many names, including JHR, the Herxheimer Effect, the Herxheimer Response, a Herx Reaction, Herx or Herks. The most common terminology used is the Herxheimer Reaction. It is also often referred to as a healing crisis, a detox reaction, or die-off syndrome.

 

History

 

The phenomenon was first described by Adolf Jarisch (1860-1902) working in Vienna, Austria, and a few years later by Karl Herxheimer (1861-1942), working in Frankfort, Germany. Both doctors were dermatologists mainly treating syphilitic lesions of the skin. They noticed that in response to treatment, many patients developed not only fever, perspiration, night sweats, nausea and vomiting, but their skin lesions became larger and more inflamed before settling down and healing. Interestingly, they found that those who had the most extreme reactions healed the best and fastest. The patient might be ill for 2-3 days, but then their lesions resolved.

 

A Medical Example

 

The Herxheimer reaction is caused by the release of toxic chemicals (endotoxins) released from the cell walls of dying bacteria due to effective treatment. The Herxheimer Reaction is well recognized in medical circles and is certainly not confined to the world of natural medicine or supplements.

 

For example, a recent study report (Feb ’04) on the treatment of Sarcoidosis found that, “. . . without exception, the improving patients are reporting periodic aggravation of their symptoms as an apparent direct response to the antibiotics. In other words, these patients say that their treatment makes them feel much worse before they experience symptom-relief.” The abstract of the study goes on to say, “This phenomenon is known as the Jarisch-Herxheimer Reaction (JHR) and is often referred to informally as Herx. JHR is believed to be caused when injured or dead bacteria release their endotoxins into blood and tissues faster than the body can comfortably handle it. . . . This provokes a sudden and exaggerated inflammatory response . . . . In Sarcoidosis patients, the Herxheimer reaction seems to be a valuable indication that an antibiotic is reaching its target.” In the conclusion, the author states: “In my work with Sarcoidosis patients, it is my experience that recovering MP patients understand and welcome the Herxheimer reactions even when they must endure temporary increased suffering. They accept it as the price that they must pay in order to get well and they even seem to find it gratifying to experience tangible evidence of bacterial elimination. “

Edited by SF Mom
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thanks SF Mom!!!! :)

 

 

 

The best explanation I've been able to find.

 

The Herxheimer Reaction - Feeling worse before feeling better

 

The Herxheimer Reaction is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms.

 

This is a normal — and even healthy — reaction that indicates that parasites, fungus, viruses, bacteria or other pathogens are being effectively killed off. The biggest problem with the Herxheimer reaction is that people stop taking the supplement or medication that is causing the reaction, and thus discontinue the very treatment that is helping to make them better. Although the experience may not make you feel particularly good, the Herxheimer Reaction is actually a sign that healing is taking place.

 

What Is The Herxheimer Reaction?

 

The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.

 

A Rose By Any Other Name

 

Technically known as the Jarisch-Herxheimer Reaction, this syndrome goes by many names, including JHR, the Herxheimer Effect, the Herxheimer Response, a Herx Reaction, Herx or Herks. The most common terminology used is the Herxheimer Reaction. It is also often referred to as a healing crisis, a detox reaction, or die-off syndrome.

 

History

 

The phenomenon was first described by Adolf Jarisch (1860-1902) working in Vienna, Austria, and a few years later by Karl Herxheimer (1861-1942), working in Frankfort, Germany. Both doctors were dermatologists mainly treating syphilitic lesions of the skin. They noticed that in response to treatment, many patients developed not only fever, perspiration, night sweats, nausea and vomiting, but their skin lesions became larger and more inflamed before settling down and healing. Interestingly, they found that those who had the most extreme reactions healed the best and fastest. The patient might be ill for 2-3 days, but then their lesions resolved.

 

A Medical Example

 

The Herxheimer reaction is caused by the release of toxic chemicals (endotoxins) released from the cell walls of dying bacteria due to effective treatment. The Herxheimer Reaction is well recognized in medical circles and is certainly not confined to the world of natural medicine or supplements.

 

For example, a recent study report (Feb ’04) on the treatment of Sarcoidosis found that, “. . . without exception, the improving patients are reporting periodic aggravation of their symptoms as an apparent direct response to the antibiotics. In other words, these patients say that their treatment makes them feel much worse before they experience symptom-relief.” The abstract of the study goes on to say, “This phenomenon is known as the Jarisch-Herxheimer Reaction (JHR) and is often referred to informally as Herx. JHR is believed to be caused when injured or dead bacteria release their endotoxins into blood and tissues faster than the body can comfortably handle it. . . . This provokes a sudden and exaggerated inflammatory response . . . . In Sarcoidosis patients, the Herxheimer reaction seems to be a valuable indication that an antibiotic is reaching its target.” In the conclusion, the author states: “In my work with Sarcoidosis patients, it is my experience that recovering MP patients understand and welcome the Herxheimer reactions even when they must endure temporary increased suffering. They accept it as the price that they must pay in order to get well and they even seem to find it gratifying to experience tangible evidence of bacterial elimination. “

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smarty,

what viral med are you using?

 

we've been doing an antifungal regimen (enzyme, flucanazole and neomycin, and high pre and probiotics). it seemed okay for first couple of weeks, but after more than three weeks and entering california for vacation, OMG, my son's vocals are off the wall, almost non stop. I don't know wht this is due to. if it is herx due to die off (we have been using bentonie clay and activated charcoal, but doesn't seem to make a difference), .... would it be this long? i have backed off the regimen to see if he calms, but after a week, he is still going strong. I don't know for positive if yeast is his problem, i just wanted to try per our DAN doc.

 

SF, would you think this type of symptom could be herxing even after all this time? I would think it would be a few days, but this is terrible. I don't know if it is because of the antifungal or what. but I have to back off and try to calm him. could all be coincidence, it didn't start right away, only after more than threee weeks. no other symptoms, (i.e. flulike, fever, nothing)....he is fine in every other way.

 

sorry to hijack, smarty, but maybe we can use my example to figure some things out. if anyone has any insight. I think I am grasping at straws right now. I've backed off, used only probiotics, and only the bentonite/charcoal on some days in CA while trying to figure this out. I really don't know what to do here.......(we are not on any abx at thist time and havn't been for some months.)......I have a feeling I may have moved some metals around with the enzyme, It has EDTA in it, but not alot.

 

I am about to give up and die...... :unsure:

Edited by faith
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Faith- I've been a guest on the forum (periodically checking in) for about a year and was wondering where you've been. I miss all your inquisitive questions! I'm sorry your son's vocals are increased. Is the probiotic he's taking something new? I know your not sure if your son is Pandas, but check and see if it has the strep ingredient. My daughter was recently prescribed a probiotic (900 billion cfu per serving--yes 900) with the strep ingredient and I noticed a huge increase of symptoms which resolved 3 days after discontinuing. I don't know if was the strep or just too much of the probiotic too soon but I switched to a different brand. Just a thought. Of course it's probably unlikely for you, since the symptoms started 3 weeks into the regimen.

Melinda

Edited by philamom
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Faith,

 

My daughter was on Nystatin last year for yeast and her body could not tolerate it (we tried for about 4 weeks). We stopped and restarted several times to no avail. Even at the lowest dose her vocal tics would be off the charts. I asked our new DAN doctor about it recently (she was just diagnosed with PANDAS) and he said that if your body has strep in it (which hers did but we didn't know it at the time) and you take anti-yeast medicine (like Nystatin or Diflucan) killing the yeast does something to the strep and it can cause your symptoms to become worse. Sorry I can't be more specific but I can't remember exactly what he said it does. Something about making more room for the strep? I just wanted to throw this info out there for you in case it might help you out at all. She's now on Diflucan, Azith and was on Flagyl for clostridium. The result has been like a miracle. No bad reactions at all. Have you checked clostridium levels in your son at all? I wrote about it in another posting but I really feel that more than anything else, my daughter's high clostridium levels were what was causing her vocals to keep escalating. We have seen a DRAMATIC change since treating her clostridium. I'm so sorry for what you are going through!!

 

Caring Mom

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Was he exposed to anything and did he show any visible signs of being ill when things increased?

 

It is very possible that it is herxing..... It can be very intense and last a very long time. Try not to create too many variables for yourself (believe me I've made that mistake). I would stick with the probiotics and bentonite clay/charcoal and see if things improve over the next 3 to 4 weeks. If they do then you know it was herxing. The 3/4 week cycle might be a clue because it is indicative of the bacterial growth cycle for Lyme. Herxing will/can make all symptoms worse plus even create a whole new set of symptoms even with TICS.

 

I know I've been HOUNDING people lately about this issue and it was difficult for me to get my head around seeing one more Dr. when LymeMom and PacificMom started posting BUT......... Have you tested your son for Lyme/co-infections yet through Igenex. I know you've been to see Dr. T so perhaps it was done.

 

Hang in there as I think you are onto something and might need to push through treatment. Its rough but then they do get better.

 

-Wendy

Edited by SF Mom
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Faith- I've been a guest on the forum (periodically checking in) for about a year and was wondering where you've been. I miss all your inquisitive questions! I'm sorry your son's vocals are increased. Is the probiotic he's taking something new? I know your not sure if your son is Pandas, but check and see if it has the strep ingredient. My daughter was recently prescribed a probiotic (900 billion cfu per serving--yes 900) with the strep ingredient and I noticed a huge increase of symptoms which resolved 3 days after discontinuing. I don't know if was the strep or just too much of the probiotic too soon but I switched to a different brand. Just a thought. Of course it's probably unlikely for you, since the symptoms started 3 weeks into the regimen.

Melinda

 

thanks melinda, I understand about the strep thermo that some talk about, but no, my probiotic doesn't contain that I always make sure just in case. but you give me an idea, I did buy a different brand as I ran out of my regularKlaire Labs and that store wasn't open on sat evening or sunday, so I just bought another brand, but had the same strains p(acidophilus and bifidum) but this one had bulgaris in it too. I did wind up taking that with me on vacation and was giving it along with the Klaire labs once I bought it....I don't know tho, I have had him off everything for about five days (no probiotics either) and he's still going strong. and my guy's vocals are always around, but this was a distinct omg worsening, and even a change in the sound from vocal to shrilly high pitched. so wierd. its possible it could be from the different brand, anything's possible, but as I said, I know I havn't given that one to him for about a week.

 

how are things going for your girl?

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Faith,

 

My daughter was on Nystatin last year for yeast and her body could not tolerate it (we tried for about 4 weeks). We stopped and restarted several times to no avail. Even at the lowest dose her vocal tics would be off the charts. I asked our new DAN doctor about it recently (she was just diagnosed with PANDAS) and he said that if your body has strep in it (which hers did but we didn't know it at the time) and you take anti-yeast medicine (like Nystatin or Diflucan) killing the yeast does something to the strep and it can cause your symptoms to become worse. Sorry I can't be more specific but I can't remember exactly what he said it does. Something about making more room for the strep? I just wanted to throw this info out there for you in case it might help you out at all. She's now on Diflucan, Azith and was on Flagyl for clostridium. The result has been like a miracle. No bad reactions at all. Have you checked clostridium levels in your son at all? I wrote about it in another posting but I really feel that more than anything else, my daughter's high clostridium levels were what was causing her vocals to keep escalating. We have seen a DRAMATIC change since treating her clostridium. I'm so sorry for what you are going through!!

 

Caring Mom

 

I really don't know where strep fits in for us because I just don't think he gets it, I've done swabs and cultures many times when symptoms of tics or ocd seem to increase, and its always negative, so basically I have nothing to go on. .... interesting what you say about the clostridium, is that the same as c. difficile? I don't know that he has that, but having discussion with a few other posters got me on this kick, for I, myself have had c. diff in the past. how did you find about the clostridium? and so the diflucan is okay for your dd because you give it with azith and flagyl? flagyl is for the clostridium, right? maybe I could ask the DAN if he would test for clostridium, but actually he didn't test for yeast, he thinks the testing is not useful.

 

wht is the change that you saw after treating for clostridium? how long did you give flagyl?

 

thanks.

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Was he exposed to anything and did he show any visible signs of being ill when things increased?

 

It is very possible that it is herxing..... It can be very intense and last a very long time. Try not to create too many variables for yourself (believe me I've made that mistake). I would stick with the probiotics and bentonite clay/charcoal and see if things improve over the next 3 to 4 weeks. If they do then you know it was herxing. The 3/4 week cycle might be a clue because it is indicative of the bacterial growth cycle for Lyme. Herxing will/can make all symptoms worse plus even create a whole new set of symptoms even with TICS.

 

I know I've been HOUNDING people lately about this issue and it was difficult for me to get my head around seeing one more Dr. when LymeMom and PacificMom started posting BUT......... Have you tested your son for Lyme/co-infections yet through Igenex. I know you've been to see Dr. T so perhaps it was done.

 

Hang in there as I think you are onto something and might need to push through treatment. Its rough but then they do get better.

 

-Wendy

 

I don't see that he was ill in any way, he seemed fine in every other way. also, I just wonder about the herxing because he didn't show any other symptom, no other tics got worse, and he didn't have flu like symptoms or tiredness that can sometime be signs of that. On some level I expected something, but not to last this long, and it didn't start right way, I was about three or so weeks into it, so this is really hard to figure out. our DAN has said it may not be that yeast is our problem and could be something else. hard to tell right now. he mentioned wanting to do a cortisone shot on next visit to see if inflammation/allergies have something to do with this, but I am going to have the same concerns I did about the steroids, so.....plus we already did allergy testing with him before, so not sure how useful that would be now.

 

I have a funny feeling the enzyme we used in conjunction may have moved metals around as it contained EDTA, not sure how this plays in it tho. Another thing I got worried about while we were on the plane, I realized I was giving the bentonite in a styrofoam cup, and it made me think that a few times I did mix the charcoal and bentonite in a plastic cup at home, plus the dose I gave on the plane was packed in a small plastic bottle... .. being this pulls toxins out of the body, would it be far fetched to think it drew out toxins from the plastics and styro and I just poured that right into my son's body? the bentonite probably coms in a glass bottle for a reason. :o geez, I could go on with speculation. i think I have to stay on this break from the antifungal regimen til he calms a little. so many variables is right, i've investigaged and am aware of so many things, that it could be (or not be) anything. I suspect everything, I'd blame the butler, if I had one..... :mellow:

 

We did test for lymes with Western blot, which was all negative.

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thanks melinda, I understand about the strep thermo that some talk about, but no, my probiotic doesn't contain that I always make sure just in case. but you give me an idea, I did buy a different brand as I ran out of my regularKlaire Labs and that store wasn't open on sat evening or sunday, so I just bought another brand, but had the same strains p(acidophilus and bifidum) but this one had bulgaris in it too. I did wind up taking that with me on vacation and was giving it along with the Klaire labs once I bought it....I don't know tho, I have had him off everything for about five days (no probiotics either) and he's still going strong. and my guy's vocals are always around, but this was a distinct omg worsening, and even a change in the sound from vocal to shrilly high pitched. so wierd. its possible it could be from the different brand, anything's possible, but as I said, I know I havn't given that one to him for about a week.

 

how are things going for your girl?

 

 

Faith-

My daughter recently had two IVIG with Dr. B and has made some amazing progress but still struggles with certain behaviors/symptoms. We just received a positive Lyme testing thru Igenex and will be seeing an Integrative doctor next week. I read your questions about c-diff. My daughter had c-diff and we've seen remarkable results from the flagyl. You could ask your DAN doctor to run a stool test or as Caring Mom mentioned in another post, you could order a urine test from Great Plains Lab. Hopefully, she'll chime in with the specifics. Please keep us posted and hang in there! Just curious - was he tested for Lyme by Igenex?

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we did lyme testing with Wesern blot, not Igenex.

 

I'm going to ask again, but for some reason , the DAN doesn't think the stool testing (for yeast anyway) is useful, because of the biofilm protecting the bad bacterias, it will show negative. but maybe he'll agree to see if it shows anything re c.diff, I am really curious, being that I had that when he was about 3 and was hospitalized, ..interesting tht his tics started at that age. probably coincidence, but....he does not show any signs of that tho.

 

what gains did you see with the flagyl, and did they sustain? may I ask why ivig if there was already some good gains with other treatment?

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we did lyme testing with Wesern blot, not Igenex.

 

I'm going to ask again, but for some reason , the DAN doesn't think the stool testing (for yeast anyway) is useful, because of the biofilm protecting the bad bacterias, it will show negative. but maybe he'll agree to see if it shows anything re c.diff, I am really curious, being that I had that when he was about 3 and was hospitalized, ..interesting tht his tics started at that age. probably coincidence, but....he does not show any signs of that tho.

 

what gains did you see with the flagyl, and did they sustain? may I ask why ivig if there was already some good gains with other treatment?

 

Igenex or Clongen are the only reliable labs and even they can be falsely negative. All other western blots are estimated to be wrong 50% of the time.

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does anyone have any info or thoughts on a herx reaction having any relationship to opening the BBB? it seems to me, that the docs are heading in the direction that the BBB is a key factor. as kara posted earlier, Dr. Leckman suggested general stress could cause opening.

 

i am having trouble understanding the reaction in general -- it's a flood of toxins produced by the dying bacteria, right? i recently heard a LLMD say that the spirochete is the only known bacteria to produce a herx reaction. i was curious about that and someone pointed out to me the use of the word known.

 

pre-pandas, i had only heard it used in relation to yeast treatment and being toxins produced when the yeast die. i'd only heard of it as a flu like situation.

 

my son seems to be having a herx due to an addition of a viral med with exacerbation of usual behaviors last week, which went away, and some OCD stuff we've never seen before. do viruses also produce toxins when they die?

 

could the herx reaction affect the BBB and we see symptoms of existing antibodies crossing it and causing symptoms?

 

i'd appreciate any thoughts!!! thanks.

 

Hello!

 

I just learned something new at my son's appointment with our Lyme doctor last week. My son is finally near the end of his lyme treatment and his doctor put him on diflucan every other day for a few weeks because diflucan can break up the biofilm on lyme cysts. This means taking diflucan can cause a lyme die off b/c it allows the antibiotics or, in your son's case, the homepathics, to kill the lyme. So it could be a lyme die off.

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