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Has anyone had any experience with LDN (low dose naltrexone)? Did it help, if you did? LLMD said it will help DS with his immune system, and I'd like to believe it, but I'd rather see what other's experience has been. Thanks.

 

http://www.ldn4cancer.com/techpapers/ldn_for_disease_prevention_quality_of_life.pdf

 

this is our second attempt/round with ldn. we used it a year ago or so for 6 months or longer..dont remember

and just restarted about a month ago.

 

i would say the first time was like this one were his mood, though not something i was trying to manage, really gives him more of a cooperative and blue bird on my shoulder attitude....not every minute..ds is a tweener!!! i noticed a quicker response the first time..within days...this time it took a week or better.

i dont understand the mechanic effects on the immune system..

 

 

maybe this one..

http://www.lowdosenaltrexone.org/

but i think naltrexone was origanally for heart disease???

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Has anyone had any experience with LDN (low dose naltrexone)? Did it help, if you did? LLMD said it will help DS with his immune system, and I'd like to believe it, but I'd rather see what other's experience has been. Thanks.

 

http://www.ldn4cancer.com/techpapers/ldn_for_disease_prevention_quality_of_life.pdf

 

this is our second attempt/round with ldn. we used it a year ago or so for 6 months or longer..dont remember

and just restarted about a month ago.

 

i would say the first time was like this one were his mood, though not something i was trying to manage, really gives him more of a cooperative and blue bird on my shoulder attitude....not every minute..ds is a tweener!!! i noticed a quicker response the first time..within days...this time it took a week or better.

i dont understand the mechanic effects on the immune system..

 

 

maybe this one..

http://www.lowdosenaltrexone.org/

but i think naltrexone was origanally for heart disease???

 

Thanks. I'm just trying to see if others feel it really helped.

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Sorry, no answer to your question but I querried our LLMD about this on our last visit and her only comment was that I would have to give it at exactly the same time every day (in other words, did I feel capable of doing this?). She did not seem to be too excited about it, although I have read quite a few good things about it.

 

We were given a bottle of Virapress to try instead - to boost the immune system - bovine albumin and globulins - on the website they call it a low dose interferon. I haven't found much info other than what's on the Virapress website. We have been using very little because I am afraid of unleashing too many cytokines.

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Sorry, no answer to your question but I querried our LLMD about this on our last visit and her only comment was that I would have to give it at exactly the same time every day (in other words, did I feel capable of doing this?). She did not seem to be too excited about it, although I have read quite a few good things about it.

 

We were given a bottle of Virapress to try instead - to boost the immune system - bovine albumin and globulins - on the website they call it a low dose interferon. I haven't found much info other than what's on the Virapress website. We have been using very little because I am afraid of unleashing too many cytokines.

 

ldn is given at bed time.

memory shot..but the side effect of the good mood, was what ever the break down that happens during the night.

not sure if is the number of hours, or if its in relation to the hormones, chemicals relesased during the sleep cycle.

it was something that was noted by dr's as an unexpected bonus/side effect.

ds is only on 2 mg

Edited by Fixit
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[ldn is given at bed time.

memory shot..but the side effect of the good mood, was what ever the break down that happens during the night.

not sure if is the number of hours, or if its in relation to the hormones, chemicals relesased during the sleep cycle.

it was something that was noted by dr's as an unexpected bonus/side effect.

ds is only on 2 mg

It can cause sleep problems in some people and apparently works if given during the day as well. I think my LLMDs point was that you have to be very precise with timing of dosage.

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Our neurologist suggested it more for behavioral stuff. She works with a lor of kids in the autism world where I think it is also used and she said it also is used for people with issues like PANDAS/Lyme. (Aidan has developmental delays and some people assume he is autistic) I may be wrong but I thought there was an Anti-inflammatory property to it. I know it also it somtimes used for people with Chrohns and MS (but isn't some of this possibly misdagnosed Lyme?)

 

When I asked our LLMD about using it she was all for it because benifit to the immune system. We decided that we would try it. Our neuro prescribed 4 mg capsules (Aidan is 50 lbs) and the Dr did not specify when to take them. After I researched it I decided to give at bedtime and I decided to start low and move up so i split the capsule first into four parts for a few days and then into 2 parts for a few days and then gave the full capsule. We did not have a huge problem with sleep but they say that is the main side effect but it usually goes away after a few days. We had just started supplementing with GABA at bedtime a week or two before that which I think had helped with his sleep so I think that we were lucky with the timing of that!

 

Anyway, we started LDN about 2 months ago when we were at a low point behaviorally - I think due to herxing. He was aggressive at school and constantly agitated - hyper, throwing things, running off at school etc etc. Adding LDN did seem to help with these behaviors and they toned things done a lot making things managable. As a side note we went on to introduce low dose abilify and we started with only 1 mg which isn't even treatment dose and we have seen further improvement. Will go up to 2 mg today and stay there for a month. The LDN seems like a more natural solution with less side effects but did not go far enough for us. (I am a little afraid of the abilify but hopefully it will get us through the treatment for this disease)

Edited by aidan'smom
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Has anyone had any experience with LDN (low dose naltrexone)? Did it help, if you did? LLMD said it will help DS with his immune system, and I'd like to believe it, but I'd rather see what other's experience has been. Thanks.

 

http://www.ldn4cancer.com/techpapers/ldn_for_disease_prevention_quality_of_life.pdf

 

this is our second attempt/round with ldn. we used it a year ago or so for 6 months or longer..dont remember

and just restarted about a month ago.

 

i would say the first time was like this one were his mood, though not something i was trying to manage, really gives him more of a cooperative and blue bird on my shoulder attitude....not every minute..ds is a tweener!!! i noticed a quicker response the first time..within days...this time it took a week or better.

i dont understand the mechanic effects on the immune system..

 

 

maybe this one..

http://www.lowdosenaltrexone.org/

but i think naltrexone was origanally for heart disease???

 

Thanks. I'm just trying to see if others feel it really helped.

 

yah..idk if it helped with any of pans stuff...i dont' think that ldn will help with symptoms..more of a slow anti inflamatory/modulating thing....i cant say i notice a differenct when we took him off.

this is being used as an aid, in combo with other stuff

 

per rowing , ithink i heard of the sleep thing...but that might not be do to the time of day given, but build up in system.

you might have to pulse it..

similar to what and why i do with melitonin..when my kids start needing it...i only give during the week, maybe not on weekends..it looses it's effectivenss and might become a little dependent.(but not exactly the same as dependent but too much)

i think originally the sleep is good, but it could change.

i might recall taking ds off for awhile and then reintroducing a week or 2 later.

also..i believe you start at your highest dose ie 4 mg and work down...you want the low dose..

but maybe the information has changed since we originally tried it a couple years ago.

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I too have started to consider what else we can use to immunomodulate besides the Zithromax. I know about LDN but am also have heard that there is an initial getting used to it period. but at this point, I'll get through it if it will help us immunomodulate.

 

I have played this game of bugs versus antibiotics before only instead of strep in the throat it was clostridia,klebsiells, yeast, etc. in the gut. It was exhausting so I gave up trying to treat gut with antibiotics and focused on immunomodulation which stopped the round robin of antibiotics...........well, a strict diet also helped.

 

So here I am back again in round robin of antibiotics....time to learn from my past......So we have LDN. Actos is antiinflammatory (maybe immunomodulator).

 

I also have Immunovir and Xymogen IgG sitting on my kitchen table....have been unable to decide which one to start as you can get some herx from them I would imagine also. Also confused on how that will play into/affect IVIG that is currently waiting approval.

 

 

Any thoughts....Tpotter, have you thought of any of these or others?

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Found some quotes from our LLMD regarding LDN in LLMD's clinic notes from visits/phone consults:

 

from appt in Dec. "Brief discussion today regarding LDN and how it can boost natural endorphins and has benefit for pain control as well as boosting imminologic funtioning."

 

ohone consult in mid-March: " "clinic is supportive fo a trial of LDN as this has beneficial effects on immunilogical functioning."

 

Finally tried it in mid-march as state in my post above.

 

I think as in most therapies for these diseases it will have obvious benefits for some and not for others.

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I too have started to consider what else we can use to immunomodulate besides the Zithromax. I know about LDN but am also have heard that there is an initial getting used to it period. but at this point, I'll get through it if it will help us immunomodulate.

 

I have played this game of bugs versus antibiotics before only instead of strep in the throat it was clostridia,klebsiells, yeast, etc. in the gut. It was exhausting so I gave up trying to treat gut with antibiotics and focused on immunomodulation which stopped the round robin of antibiotics...........well, a strict diet also helped.

 

So here I am back again in round robin of antibiotics....time to learn from my past......So we have LDN. Actos is antiinflammatory (maybe immunomodulator).

 

I also have Immunovir and Xymogen IgG sitting on my kitchen table....have been unable to decide which one to start as you can get some herx from them I would imagine also. Also confused on how that will play into/affect IVIG that is currently waiting approval.

 

 

Any thoughts....Tpotter, have you thought of any of these or others?

 

 

I personally use Xymogen IgG, but our holistic chiropractor did not recommend it for DS16, which is the one that LLMD is saying to try to the LDN on. I ordered the LDN today, but starting with liquid, so I get build up. When I looked online, it said to start low, and build gradually, and I rather like that plan. We also do acupuncture, and the acupuncturist is also working on the immune system. Seems we are dealing with a flare-up of mycoP and EBV and other viruses again, as those IgG's have gone up again. Also, I have finally figured out that whenever he gets strep, it appears to always be scarlet fever (gets the rash), but his doctor never seemed terribly concerned. I'm going to bring all of this to his regular doctor's attention today, because DS goes in for his weekly bacillin injection, and I've pulled together all the old lab work, as well as current ones. I don't know that he'll know what to do, but I think it would help for him to at least be aware of. Plus, if we are always dealing with scarlet fever, this could be a very significant piece of the puzzle.

 

Thanks for everyone's input on the LDN. I'll let you all know how it goes.

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