Jump to content
ACN Latitudes Forums

Week 4 OLE, last update!


Recommended Posts

So, those who have followed our scary journey off of abx know our story by now. Here is the latest:

 

DS2: Doing SOOOOOOO good! This child is knocking my socks off! And keep in mind we made the switch TWO WEEKS after active, confirmed strep infection! The week I switched from abx his OCD improved, but more surprisingly, his lagging speech TOOK OFF!!!! The speech therapist has been amazed with his progress (and she does not give out praise very easily :( ) So I don't know if the progress has been b/c the abx has been holding him back, or the OLE is just what his little body needed to get rid of the last of the inflammation (and strep and viruses and whatever else has been lurking). But here we are and he is just getting better and better each week! It is hard to put into words, it's more than just speech, it's like the last of his autism has been lifted, whatever was left that held him back from being FULLY present and interactive with us. I keep thinking it's like he is finally a fully developed human for the first time...I know that sounds weird, but I guess what I am trying to say is that this child finally seems "normal" to me in every sense of the word. Oh, he is still battling yeast but that is under control doing a yeast rotation (biocidin, oil of oregano and grapefruit seed extract). Also, his impetigo is still under control with herbs, topical GSE and also Calendula Cream (also a miracle in and of itself, this has been a 10 month battle that we just weren't winning with standard abx).

 

DS5: Also doing fabulous in terms of pandas. In fact, i did a little test this past week to see if he could get by with a lower dose (was taking 500 three times a day, I backed down to 500 twice a day). Within 24-36 hours I was having to "rescue" him with ibuprofen (having mood swings, depression, a "poking me in the face" tic/compulsion). I continued for 3 days to see if it was just coincidence. Could not go without ibup for 3 days so decided to increase to original OLE dose and the mood swings and tics were gone. So, at least i know for sure he is on the minimum dose that is effective for him. He is, however, still battling yeast/bacteri. Everytime I treat yeast, bacteria pops up. Every time I treat bacteria, yeast pops up. I have been controlling the bacteria with Biocidin, and like the OLE I have tried TWICE to go without it and he absolutely cannot function without it (gut bacteria can be very nasty for some kids). So now he needs to be on OLE, Biocidin and also a yeast rotation (similar to my 2 yo). I am talking to the DAN doctor on Wed to see how we can get off the biocidin. Maybe I need to give in and do a round of vanco/diflucan to get on top of this problem (or maybe I just need to stop DCing the biocidin for a good month and then see where we are). I plan to do a stool analysis in the next week to see what the heck we are dealing with and go from there. Either way I am so darn happy the OLE is working out for us. I am also so much more relaxed about taking my kids places. I just feel so confident about OLE's abillity to prevent strep (where with azith, people were dropping like flies down here in florida with strep, including both of mine).

 

I have my whole family taking OLE, by the way...

 

This is my last update b/c I don't want to keep boring everyone with it, but I do think that one month is a pretty good indication that it is working for us. Maybe I will give a quick update after Feb to let everyone know whether or not we made it through another high strep time (DS5 gets it EVERY Jan/Feb.). To me that will be the real test....

Link to comment
Share on other sites

So, those who have followed our scary journey off of abx know our story by now. Here is the latest:

 

DS2: Doing SOOOOOOO good! This child is knocking my socks off! And keep in mind we made the switch TWO WEEKS after active, confirmed strep infection! The week I switched from abx his OCD improved, but more surprisingly, his lagging speech TOOK OFF!!!! The speech therapist has been amazed with his progress (and she does not give out praise very easily :( ) So I don't know if the progress has been b/c the abx has been holding him back, or the OLE is just what his little body needed to get rid of the last of the inflammation (and strep and viruses and whatever else has been lurking). But here we are and he is just getting better and better each week! It is hard to put into words, it's more than just speech, it's like the last of his autism has been lifted, whatever was left that held him back from being FULLY present and interactive with us. I keep thinking it's like he is finally a fully developed human for the first time...I know that sounds weird, but I guess what I am trying to say is that this child finally seems "normal" to me in every sense of the word. Oh, he is still battling yeast but that is under control doing a yeast rotation (biocidin, oil of oregano and grapefruit seed extract). Also, his impetigo is still under control with herbs, topical GSE and also Calendula Cream (also a miracle in and of itself, this has been a 10 month battle that we just weren't winning with standard abx).

 

DS5: Also doing fabulous in terms of pandas. In fact, i did a little test this past week to see if he could get by with a lower dose (was taking 500 three times a day, I backed down to 500 twice a day). Within 24-36 hours I was having to "rescue" him with ibuprofen (having mood swings, depression, a "poking me in the face" tic/compulsion). I continued for 3 days to see if it was just coincidence. Could not go without ibup for 3 days so decided to increase to original OLE dose and the mood swings and tics were gone. So, at least i know for sure he is on the minimum dose that is effective for him. He is, however, still battling yeast/bacteri. Everytime I treat yeast, bacteria pops up. Every time I treat bacteria, yeast pops up. I have been controlling the bacteria with Biocidin, and like the OLE I have tried TWICE to go without it and he absolutely cannot function without it (gut bacteria can be very nasty for some kids). So now he needs to be on OLE, Biocidin and also a yeast rotation (similar to my 2 yo). I am talking to the DAN doctor on Wed to see how we can get off the biocidin. Maybe I need to give in and do a round of vanco/diflucan to get on top of this problem (or maybe I just need to stop DCing the biocidin for a good month and then see where we are). I plan to do a stool analysis in the next week to see what the heck we are dealing with and go from there. Either way I am so darn happy the OLE is working out for us. I am also so much more relaxed about taking my kids places. I just feel so confident about OLE's abillity to prevent strep (where with azith, people were dropping like flies down here in florida with strep, including both of mine).

 

I have my whole family taking OLE, by the way...

 

This is my last update b/c I don't want to keep boring everyone with it, but I do think that one month is a pretty good indication that it is working for us. Maybe I will give a quick update after Feb to let everyone know whether or not we made it through another high strep time (DS5 gets it EVERY Jan/Feb.). To me that will be the real test....

 

How dare you go and have a life... :wub::(

Link to comment
Share on other sites

Amazing.:D

 

On a update note, I can understand why you might not want to continue doing it weekly. Could you go to monthly? Feb seems to long to wait to hear again. Also if you notice any other changes, please let us know.

 

Thanks,

Kara

Link to comment
Share on other sites

So, those who have followed our scary journey off of abx know our story by now. Here is the latest:

 

DS2: Doing SOOOOOOO good! This child is knocking my socks off! And keep in mind we made the switch TWO WEEKS after active, confirmed strep infection! The week I switched from abx his OCD improved, but more surprisingly, his lagging speech TOOK OFF!!!! The speech therapist has been amazed with his progress (and she does not give out praise very easily :( ) So I don't know if the progress has been b/c the abx has been holding him back, or the OLE is just what his little body needed to get rid of the last of the inflammation (and strep and viruses and whatever else has been lurking). But here we are and he is just getting better and better each week! It is hard to put into words, it's more than just speech, it's like the last of his autism has been lifted, whatever was left that held him back from being FULLY present and interactive with us. I keep thinking it's like he is finally a fully developed human for the first time...I know that sounds weird, but I guess what I am trying to say is that this child finally seems "normal" to me in every sense of the word. Oh, he is still battling yeast but that is under control doing a yeast rotation (biocidin, oil of oregano and grapefruit seed extract). Also, his impetigo is still under control with herbs, topical GSE and also Calendula Cream (also a miracle in and of itself, this has been a 10 month battle that we just weren't winning with standard abx).

 

DS5: Also doing fabulous in terms of pandas. In fact, i did a little test this past week to see if he could get by with a lower dose (was taking 500 three times a day, I backed down to 500 twice a day). Within 24-36 hours I was having to "rescue" him with ibuprofen (having mood swings, depression, a "poking me in the face" tic/compulsion). I continued for 3 days to see if it was just coincidence. Could not go without ibup for 3 days so decided to increase to original OLE dose and the mood swings and tics were gone. So, at least i know for sure he is on the minimum dose that is effective for him. He is, however, still battling yeast/bacteri. Everytime I treat yeast, bacteria pops up. Every time I treat bacteria, yeast pops up. I have been controlling the bacteria with Biocidin, and like the OLE I have tried TWICE to go without it and he absolutely cannot function without it (gut bacteria can be very nasty for some kids). So now he needs to be on OLE, Biocidin and also a yeast rotation (similar to my 2 yo). I am talking to the DAN doctor on Wed to see how we can get off the biocidin. Maybe I need to give in and do a round of vanco/diflucan to get on top of this problem (or maybe I just need to stop DCing the biocidin for a good month and then see where we are). I plan to do a stool analysis in the next week to see what the heck we are dealing with and go from there. Either way I am so darn happy the OLE is working out for us. I am also so much more relaxed about taking my kids places. I just feel so confident about OLE's abillity to prevent strep (where with azith, people were dropping like flies down here in florida with strep, including both of mine).

 

I have my whole family taking OLE, by the way...

 

This is my last update b/c I don't want to keep boring everyone with it, but I do think that one month is a pretty good indication that it is working for us. Maybe I will give a quick update after Feb to let everyone know whether or not we made it through another high strep time (DS5 gets it EVERY Jan/Feb.). To me that will be the real test....

 

How dare you go and have a life... :wub::(

 

You know me, I'm not going anywhere! I'm just not going to continue to give my weekly updates b/c I know for the people who don't believe in holistic approaches or the ones who think it can't possibly be that simple, it can get annoying (I know b/c I was there about a year ago, myself). If we start to slip or anything changes I will let you all know...

 

 

Amazing.:D

 

On a update note, I can understand why you might not want to continue doing it weekly. Could you go to monthly? Feb seems to long to wait to hear again. Also if you notice any other changes, please let us know.

 

Thanks,

Kara

 

I'll let you know if there are any changes. BTW, you know if we get on top of yeast and bacteria I will be shouting that from the rooftops, too! I might even be - dare I say - bored! ^_^

Link to comment
Share on other sites

Stephanie, I've missed all of this. Can you tell me what OLE is?

 

Olive Leaf Extract

 

http://www.ourkidsasd.com/products/?s=olive+leaf

 

By the way, I am convinced that OLE is doing more than just killing strep. I do know that it is also antiinflammatory and also antioxidant and immune booster, antiviral, antiparasitic, etc. I am starting to wonder if maybe it is doing more than just killing strep, otherwise why would my 5yo go backwards in such a short amount of time when I reduced the dose.

 

I actually just did a google search on lyme and OLE, came across some interesting info. Makes me wonder, especially with my 2yo...did it kill some other thing he had going on? latent virus, lyme?

Link to comment
Share on other sites

Thanks for continuing to post. Honestly, we are doing so well on abx, that we'd be afraid to change anything. But I print your posts for the day that we may need them for a variety of reasons. I'm so glad that this is working for both your kids - it may be very valid options for kids - and especially for parents whose kids have adverse reactions to abx, or those that cannot get access to abx.

 

I was reading about your DS5 - our daughter is similar on Azith - we cannot take her off it without getting an immediate return of symptoms, which are then helped by Advil. We actually just increased the dose to an immediate jump to 100% from around 95%. I think it is interesting that we are both seeing the same thing!

 

We have not had yeast issues - we do a pulse dose, which our original neuro started us on for a variety of reasons. I believe he felt it allowed a rest time in the body, kept overall levels smooth, and that this helped prevent yeast buildup. Maybe she is not prone to yeast but I thought I'd pass this on. I'm not sure how that would work with OLE. I've been reading a lot about pulse dosing lately - there is some great information about pulse dosing and imflamatory issues on the Road Back (RA site). http://www.roadback.org/index.cfm/fuseaction/education.display/display_id/122.html I also have had this same recommendation from a LLMD, although we do not currently think we are dealing with Lyme. Our dosing is simple - we just use every other day, unless there is an illness at play and then we increase to a daily dose.

Link to comment
Share on other sites

Stephanie, which brand OLE are you using again? I started my dd on Seagate while on an antibiotic and her tic became much worse so I stopped it. Some day I would like to get to the point where we can try it again, perhaps the brand you are using.

 

 

Hi, I don't see Seagate, perhaps it does not have enough oleropein content.

I would go with Thorne, they have very high quality stuff and plenty of oleropein. I just ordered some cheap at healthdesigns.com, going to try it on my four year old see if I see any improved behavior.

Someone said no OLE while on antibiotics, I believe.

Michael

Link to comment
Share on other sites

Ah, Olive Leaf Extract. You can't take antibiotics at the same time right?

 

Have you ever heard of OLE as a strep erradicator?

 

I hear this all the time, but I did a search yesterday and found a post from someone who claimed that it was a rumor going around that you can't take antibiotics with it b/c it will reduce the efficacy of the abx. She said the rumor was started b/c some abx are made from a fungus base - ie penicillin and such. So the theory is that if the OLE kills that fungus then it inactivates the abx. This person claimed that penicillin is no longer attached and dependant on the original fungus so this is impossible. If anyone else has a better explanation, I would love to hear it b/c at this very moment I started my 5yo on vancomycin to kill the gut bacteria and I am keeping him on his full dose of OLE. Personally I do think the vanco is still doing it's job b/c we had some KILLER, and I mean KILLER die-off yesterday 30 minutes after his first dose. 45 minute rage...

 

 

Stephanie, which brand OLE are you using again? I started my dd on Seagate while on an antibiotic and her tic became much worse so I stopped it. Some day I would like to get to the point where we can try it again, perhaps the brand you are using.

 

I am using New Beginnings...

 

 

Thanks for continuing to post. Honestly, we are doing so well on abx, that we'd be afraid to change anything. But I print your posts for the day that we may need them for a variety of reasons. I'm so glad that this is working for both your kids - it may be very valid options for kids - and especially for parents whose kids have adverse reactions to abx, or those that cannot get access to abx.

 

I was reading about your DS5 - our daughter is similar on Azith - we cannot take her off it without getting an immediate return of symptoms, which are then helped by Advil. We actually just increased the dose to an immediate jump to 100% from around 95%. I think it is interesting that we are both seeing the same thing!

 

We have not had yeast issues - we do a pulse dose, which our original neuro started us on for a variety of reasons. I believe he felt it allowed a rest time in the body, kept overall levels smooth, and that this helped prevent yeast buildup. Maybe she is not prone to yeast but I thought I'd pass this on. I'm not sure how that would work with OLE. I've been reading a lot about pulse dosing lately - there is some great information about pulse dosing and imflamatory issues on the Road Back (RA site). http://www.roadback.org/index.cfm/fuseaction/education.display/display_id/122.html I also have had this same recommendation from a LLMD, although we do not currently think we are dealing with Lyme. Our dosing is simple - we just use every other day, unless there is an illness at play and then we increase to a daily dose.

 

We used to have the same success with azith - I always called it the miracle elixer! But then gut bacteria moved in and azith became our nemesis! That is a great idea about using it every other day, I even wonder if you could divide the dose into every 3rd day and so on (meaning increase the dose, but decrease the frequency). In fact, before we got our little azith resistant case of strep in Sept that was our goal, to increase the dose and decrease the frequency so that the kids had a chance to overcome the yeast/bacteria in between. Our DAN doctor even suggested giving 1000mg, once a week to my 50 lb 5yo!! I had never heard that recommendation before and actually, theoretically it sounds brilliant. But we never got that far. In the meantime, I am not completely dismissing the idea of ever going back and giving that plan a trial b/c what the heck, how much easier would it be to give abx once a week rather than 3 times a day (which means giving 2 doses of probiotics separate from that = supps to both boys 5 times a day!!!!). Still concerned about azith resistent strep, though. Becoming a real problem down here in florida.

 

 

Stephanie, which brand OLE are you using again? I started my dd on Seagate while on an antibiotic and her tic became much worse so I stopped it. Some day I would like to get to the point where we can try it again, perhaps the brand you are using.

 

 

Hi, I don't see Seagate, perhaps it does not have enough oleropein content.

I would go with Thorne, they have very high quality stuff and plenty of oleropein. I just ordered some cheap at healthdesigns.com, going to try it on my four year old see if I see any improved behavior.

Someone said no OLE while on antibiotics, I believe.

Michael

 

Like I said above, if you know why please let me know!! BTW, I did ask our DAN doctor about this and he was not concerned about the use of OLE with abx. We are doing it right now and maybe I will have to come back and report after a few weeks if the abx kicked the gut bacteria in the *$$ afterall!

Link to comment
Share on other sites

Stephanie -

Thanks for all the great infor on this topic, and your link to flu recommendations (and like there to the Vitamin D council) . I used the Oil of Oregano on myself - I believe it cleared a sinus infection I've had for who knows how long. I am considering added the Olive Leaf Extract to Ds's meds. He's currently on 50)mg azith. I've been very hesitant to drop to 250 (prophylactic does) since ivig. But am considering it along with the OLE...

 

a note on dosing - my DS couldn't tolerate 500mg azith togehter. Initially was giving 250 morning and 250 before bed. Now I try to give as close as possible - so that I can follow up with probiotics and those can stay in his gut longer. What usually ends up happening is morning, after school, and then I give probiotic around dinner. Some times he'll have yogurt for snack so he get probiotic in between does as well. On weekends, its at breakfast, a few hours later (snack time) and then probiotic at or after lunch. I feel that as long as he gets it before bed...and it has 12 or so hours before antibiotic does...we're doing pretty good. But we don't have any yeast issued (and hope never to!)

 

You can do this with azith - it has a long half- life (that the term?) some of the other antibiotics don't last as long...so you have to give every 12 (or less) hours.

Link to comment
Share on other sites

We used to have the same success with azith - I always called it the miracle elixer! But then gut bacteria moved in and azith became our nemesis! That is a great idea about using it every other day, I even wonder if you could divide the dose into every 3rd day and so on (meaning increase the dose, but decrease the frequency). In fact, before we got our little azith resistant case of strep in Sept that was our goal, to increase the dose and decrease the frequency so that the kids had a chance to overcome the yeast/bacteria in between. Our DAN doctor even suggested giving 1000mg, once a week to my 50 lb 5yo!! I had never heard that recommendation before and actually, theoretically it sounds brilliant. But we never got that far. In the meantime, I am not completely dismissing the idea of ever going back and giving that plan a trial b/c what the heck, how much easier would it be to give abx once a week rather than 3 times a day (which means giving 2 doses of probiotics separate from that = supps to both boys 5 times a day!!!!). Still concerned about azith resistent strep, though. Becoming a real problem down here in florida.

 

If our dd does well for 6 months or so, I'll likely take down the frequency from 4 days to 3 - we'll see. We use it less for a preventative (we react to all virus as well, so strep is bad, but so is everything else) and more for whatever it is doing for her immune system/inflamation. If she gets strep, I expect we'll need something else in combo. We do use omegas & vit d every day to try to prevent/strengthen immunity. So far, something is working - knock on wood, she is healthy so far this year, but our bad times are usually Jan - May in terms of illness.

 

Anyway, I am glad to hear that OLE is working, and will keep it in my tool box. If the azith quit working, maybe I can rotate.

 

Thanks for keeping us posted.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...