Mayzoo Posted May 6, 2013 Report Share Posted May 6, 2013 This is interesting...I was searching this topic because my 19 yr old son had started biaxin and valtrex about a week ago with pretty dramatic decrease of rages and OCD. I added curcumin in this weekend and the OCD is back and he has had 2 rage incidents. I have been trying to figure out what might be different and the curcumin is the only thing that has been added. I am stopping it now and hope to see a return of the calmer kid I had last week. It may be a herxing reaction. When a med kills off bacteria or yeast, sometimes the release of toxins can lead to a reaction much like what you are trying to solve. Here is an article on it: http://en.wikipedia.org/wiki/Herx Link to comment Share on other sites More sharing options...
nicklemama Posted May 7, 2013 Author Report Share Posted May 7, 2013 I agree with Mayzoo, I think you are seeing a herx reaction. You are killing something with it. Enhansa is reportedly an antiviral, anti yeast and antibacterial. I don't know if the website at Lee Silsby says this or not. I know they tout its anti inflammatory properties. If you could hang in there a bit, you might see results. Are you doing anything for the herx like lots of lemon water? DS' s doctor recommends 10 drops of burbur in 4 oz of water and sublingual glutathione every 15 minutes until the herx is over. We haven't had to do this. Last I reported, it had been a week and it was time to up the dose. I doubled, as instructed, to 150mg twice a day, from 150mg once a day. What I am seeing is pudding poop. Been that way for a week but finally getting better. I was supposed to up his dose to 300mg in the morning and 150mg at dinner but I am not going to up the dose until his poop has returned to normal and give that some time. Link to comment Share on other sites More sharing options...
jdude Posted May 8, 2013 Report Share Posted May 8, 2013 What is the difference or benefit of Enhansa v. other curcuminoid products that are readily available at health food stores? Link to comment Share on other sites More sharing options...
DsMom Posted May 8, 2013 Report Share Posted May 8, 2013 My DS had a definate uptick in all his anxieties, anger, tics, etc. w/ Biaxin...so your 19 yr old might be reacting to that as well, or has he been taking for awhile? Since you said 'had started' I'm thinking he's new to it? I moved DS13 off after 3ish weeks to Mino ( per Dr. T) and he calmed down to his 'normal', which isn't great but sure is better than non-stop flaring behaviours. Good luck Link to comment Share on other sites More sharing options...
beeskneesmommy Posted May 8, 2013 Report Share Posted May 8, 2013 Hi - I welcome opinions from all, and particularly would like to hear from you, LLM! I am interested in perhaps trying Enhansa. My son has come very, very far with 2 years of Azith and Augmentin, daily, as well as 1 round of IVig last Sept. However, the very best that he has been over the last 6 months is when he has been on Diflucan, daily. It makes a gigantic diference - I have stopped and started x 4 to make sure that my observations are correct. Here we go with some difficulty again this morning since I stopped it last Sun. He has minimal Candida issues, althought it is present. I believe that the Diflucan has anti-inflammatory properties and is working on this separate mechanism for him. Our plan is to do another round of IVig in about 12 days, blast him with a 30 day run of Clindomycin along with 14 days of Rifampin. The Azith will stay on board and the Augmentin will D/C at the start of the Clindo. Obviously, I cannot put him on Diflucan indefinitely, so I am looking for an alternative. Could Enhanza be it? Would you mind posting a link to the correct product so I do not get into an imposter on the Internet? Are there any thoughts, suggestions, ideas regarding what I have written about? Love the feedback, thx! Link to comment Share on other sites More sharing options...
LNN Posted May 8, 2013 Report Share Posted May 8, 2013 Bees - when I stopped the Enhansa, a few people encouraged me to push thru, even at a lower dose, or to try it again over the summer. They felt that what I was seeing was a herx and evidence that something was being killed. I have no idea if this is true or not. I know that my son had mild OCD for two months, with no other symptoms other than mild hyperactivity, negative for yeast, no signs of any infection - and yet he's never had "just" OCD - there's always been an infection trigger. So you could argue that this was indeed a herx response. However, I can also argue that Enhansa isn't the right weapon for my son because of his MAO status and curcumin being an MAO inhibitor. But here's how I looked at the problem - taking Enhansa took an 70 degree partly sunny day and turned it into a cloudy 50 degree day. Now, in February, at the end of winter, I'll take a 50 degree cloudy day any time. 50 is a great improvement over 20 degrees and snow. But we were in May weather, where going back to the 50s sucks. I don't want to take out the coats again. I waited a long time to wear short sleeves, where we only have to deal with some mild OCD - not eager to go backward. Rather spoiled brat on my part, but we've been at this for almost 5 years. The family is entitled to 70. Does that make sense? So instead, because my current view of the world is through methylation-colored glasses, I opted to supplement with copper (which I should've been doing anyway b/c of our high zinc supplementing for pyroluria). Copper supports MAO, which is the opposite of what curcumin does. When we saw the OCD start to wane, it was like finding a way to get to 72 degrees - still partly cloudy, but not 50. Now, 2 1/2 weeks later, the OCD has dropped from a 4-5 to a 2. Not as immediate as I'd hoped, but the right direction. Yesterday, I googled a little and see that copper has certain antifungal, antimicrobial properties. This fits nicely with my little view of the world - I'm giving something that supports methylation and that may be killing the thing that was triggering the OCD. Two months from now, I may find I was wrong, but for now, this theory is working for me. So back to your question - the need for diflucan and the inability to hold onto gains without it sure does suggest some sort of fungal infection. From what I understand, curcumin/Enhansa could be great for this and be just the thing your son needs. Or...not. You won't know until you try (tho you may want to try it now, before the IVIG, or wait until you're done with the post-IVIG plan). If the Enhansa isn't right for him, just know there are other options and you'll find them. This is the link to Enhansa http://leesilsby.com/enhansa-homepage It's not expensive and worth a try, IMO. If it doesn't work, post about it and maybe by then, I'll have more ideas/perspective. JDude - not ignoring your question - I just don't have an answer for you. Link to comment Share on other sites More sharing options...
Mayzoo Posted May 8, 2013 Report Share Posted May 8, 2013 What is the difference or benefit of Enhansa v. other curcuminoid products that are readily available at health food stores? We use BCM-95, which is Bio-enhanced curcumin 95. So far as I can tell, it is the same as Enhansa, but much less expensive. Then there is the plain non-bioenhanced curcumin. It is not as well absorbed, nor does it remain in the blood stream as long. Enhansa and BCM-95 both state they are absorbed at a rate of 7 or 8 times greater than plain curcumin. BCM-95 comes in several different brand names and strengths. Link to comment Share on other sites More sharing options...
sf_mom Posted May 9, 2013 Report Share Posted May 9, 2013 (edited) I wanted to add that my younger son is also markedly better on Diflucan. Immediate improvement and last while on Diflucan. He has also been taking Enhansa since last fall. Enhansa has helped but not anything like the Diflucan. I plan to ask our LLMD at next visit if there is any truth to the following information. Note: The Diflucan is not being used to treat a possible yeast overgrowth due to the antibiotics, rather, it is being used because many of those with Lyme disease are getting better taking it for extended periods of time as a result of pioneering work done by Fritz Schardt, a German physician specializing in internal medicine. Dr. Schardt found that when he treated himself and others with chronic Lyme with Diflucan, many of them, including himself, eventually got better, and part of the reason is that he feels Diflucan interferes with the spirochetes’ ability to grow and replicate: “JN: Tell me your reasoning as to why diflucan might work in chronic lyme. FS: There are several reasons. First of all, it inhibits an enzyme called cytochrome P450. This is an enzyme that your liver, for instance, uses to detoxify chemicals and drugs. Borrelia has a very primitive p450 defense, so if you inhibit it, it is easily weakened. Therefore I believe that diflucan inhibits the growth and replication of borrelia. It does not necessarily kill it. In addition, it penetrates well into the cells and into the nervous system and brain, where borrelia may hide.” Edited May 9, 2013 by SF Mom Link to comment Share on other sites More sharing options...
tpotter Posted May 9, 2013 Report Share Posted May 9, 2013 Bees - when I stopped the Enhansa, a few people encouraged me to push thru, even at a lower dose, or to try it again over the summer. They felt that what I was seeing was a herx and evidence that something was being killed. I have no idea if this is true or not. I know that my son had mild OCD for two months, with no other symptoms other than mild hyperactivity, negative for yeast, no signs of any infection - and yet he's never had "just" OCD - there's always been an infection trigger. So you could argue that this was indeed a herx response. However, I can also argue that Enhansa isn't the right weapon for my son because of his MAO status and curcumin being an MAO inhibitor. But here's how I looked at the problem - taking Enhansa took an 70 degree partly sunny day and turned it into a cloudy 50 degree day. Now, in February, at the end of winter, I'll take a 50 degree cloudy day any time. 50 is a great improvement over 20 degrees and snow. But we were in May weather, where going back to the 50s sucks. I don't want to take out the coats again. I waited a long time to wear short sleeves, where we only have to deal with some mild OCD - not eager to go backward. Rather spoiled brat on my part, but we've been at this for almost 5 years. The family is entitled to 70. Does that make sense? So instead, because my current view of the world is through methylation-colored glasses, I opted to supplement with copper (which I should've been doing anyway b/c of our high zinc supplementing for pyroluria). Copper supports MAO, which is the opposite of what curcumin does. When we saw the OCD start to wane, it was like finding a way to get to 72 degrees - still partly cloudy, but not 50. Now, 2 1/2 weeks later, the OCD has dropped from a 4-5 to a 2. Not as immediate as I'd hoped, but the right direction. Yesterday, I googled a little and see that copper has certain antifungal, antimicrobial properties. This fits nicely with my little view of the world - I'm giving something that supports methylation and that may be killing the thing that was triggering the OCD. Two months from now, I may find I was wrong, but for now, this theory is working for me. So back to your question - the need for diflucan and the inability to hold onto gains without it sure does suggest some sort of fungal infection. From what I understand, curcumin/Enhansa could be great for this and be just the thing your son needs. Or...not. You won't know until you try (tho you may want to try it now, before the IVIG, or wait until you're done with the post-IVIG plan). If the Enhansa isn't right for him, just know there are other options and you'll find them. This is the link to Enhansa http://leesilsby.com/enhansa-homepage It's not expensive and worth a try, IMO. If it doesn't work, post about it and maybe by then, I'll have more ideas/perspective. JDude - not ignoring your question - I just don't have an answer for you. LLM...I just absolutely love your posts...70 degree days, 50 degree days, etc. Link to comment Share on other sites More sharing options...
beeskneesmommy Posted May 9, 2013 Report Share Posted May 9, 2013 I wanted to add that my younger son is also markedly better on Diflucan. Immediate improvement and last while on Diflucan. He has also been taking Enhansa since last fall. Enhansa has helped but not anything like the Diflucan. I plan to ask our LLMD at next visit if there is any truth to the following information. Note: The Diflucan is not being used to treat a possible yeast overgrowth due to the antibiotics, rather, it is being used because many of those with Lyme disease are getting better taking it for extended periods of time as a result of pioneering work done by Fritz Schardt, a German physician specializing in internal medicine. Dr. Schardt found that when he treated himself and others with chronic Lyme with Diflucan, many of them, including himself, eventually got better, and part of the reason is that he feels Diflucan interferes with the spirochetes’ ability to grow and replicate: “JN: Tell me your reasoning as to why diflucan might work in chronic lyme. FS: There are several reasons. First of all, it inhibits an enzyme called cytochrome P450. This is an enzyme that your liver, for instance, uses to detoxify chemicals and drugs. Borrelia has a very primitive p450 defense, so if you inhibit it, it is easily weakened. Therefore I believe that diflucan inhibits the growth and replication of borrelia. It does not necessarily kill it. In addition, it penetrates well into the cells and into the nervous system and brain, where borrelia may hide.” This is so interesting! DS6 was classic Strep:PANDAS, dx at age 2.5. That was 4 years ago. 2 years ago he did come up with a few bands, igg and igm for Lyme and igg for borderline bart. + results were believed to be true, but they were both pretty borderline, apparently. He was started by Dr. B on Azith and Augmentin 7/11 and remains on the combo today. I had never been totally "sold" on the Lyme/Bart and thought perhaps it was a false +. Recently, when I described the herx that he went thru for 2 weeks after starting the combo, Dr. L seemed to think that the Lyme dx had been valid. He was tested again in May 2012 and both were neg. Both of the tests were not western blot, but the good, long term cultures. DS continued to improve and has not been in a really bad flare since he was exposed to another boy for several days who had active Strep and Myco last August. He has had flares since then, but not the ones that put the family in crisis. I am sure the IVig helped a lot as well. I can access more Diflucan and I will. However, it is good to have hope that if it is acting as a diff. mechanism than solely antifungal/antiflammatory, then it may actually be killing off the Spirochete by arresting the reproductive cycle?? @LLM, thank you - I tried DS on Inisotol some time back and he flared terribly. Stopped it quickly. Inisotol is believed to effect serotonin, so I want to be careful with anything like that. I will likely try the Enhansa if it is needed over the summer some time, so as not to muddy the waters. We have been sunny at 75 for quite a while on the Diflucan, but I want to get to the meat of it, not just put a band aid on it. It is clear that when off of it, there is a dip. Unfortunately, Diflucan looses effectivenes if used over long periods of time, so I want to try to find other avenues... Thanks all! Link to comment Share on other sites More sharing options...
sf_mom Posted May 9, 2013 Report Share Posted May 9, 2013 I will definitely report back our Dr.'s perspective on the use of Diflucan for Lyme. Our younger son had a very obvious improvement and almost immediately. He was the best I had ever seen while taking it. If you read more on the use of Diflucan for Lyme it is a pulsed protocol no longer than 50 days due to potential liver toxicity. However, it may take several rounds of those 50 days pulses to treat the Lyme (or whatever) more effectively. I just wanted to let you know you are not alone in the observation of improvement from the use of Diflucan. As for Lyme/Bartonella or not I think the use of combo antibiotics throughout your DS treatment has been helping no matter the source of infection. Link to comment Share on other sites More sharing options...
beeskneesmommy Posted May 9, 2013 Report Share Posted May 9, 2013 Yes, I am firm beliver in this abx combo in our case. Azith would be the treatment of choice for Lyme/Myco for a child this age, and Augmentin for Strep. He showed very significant improvement over a long period of time (2 steps forward 1 step back) to the point at which I really questioned whether we should do the IVig last Sept. Of course, that helped as well and the addition of Diflucan rendered him just like any other boy for a good long stint. However, because of the minor flares betw. Diflucan and the Strep titres still up and down (and mine as well - we feed Strep off of each other), we are doing another IVig in 11 days. Hoping to keep pushing him forward in this excellent progress...perhaps over the finish line. We have the added control in that he is an only child, so identifying and controlling exposure to illness in the home is a little easier. The progress, overall, has been amazing, but the Diflucan...well, it just takes that final edge off every time he is on it. Too many factors to observe with good protocol, as he IS a little high on the Candida, and he WAS exposed to another boy who was coughing over the weekend, just prior to this current flare...so the ability to pinpoint it is skewed. I will be talking to Dr. B on the 16th and will bring it up again. http://www.neuroborreliose.net/downloads/a_new_approach_to_chronic_lyme_disease.pdf Link to comment Share on other sites More sharing options...
nicklemama Posted May 10, 2013 Author Report Share Posted May 10, 2013 Hmmm...my son is doing as well as he has in so long I can't remember. He is on augmentin/biaxin combo for PANS/ coinfections and diflucan and enhansa. We aren't even at max dose of enhansa and he takes diflucan EOD. I hate putting that in writing. It always bites me in the butt. Link to comment Share on other sites More sharing options...
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