Do immune boosters damage us?

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nogutsnoglory

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Since we have an auto-immune disease, do immune boosters make us more likely to have more symptoms? It's so weird to think about because I want to take herbs like echinacea during cold/flu season but that could make the crohns worse no?
 
Good question!

Well, if immune boosters don't work then LDN would not be a good treatment method for Crohn's. My son has a GI appointment tomorrow and has been on LDN for a month now - I know what his imflammatory markers were in July, he had blood work done on Saturday - so it will be interesting to see where his imflammatory markers are now.
 
its such a bizarre thing, you want to get better you want to be healthier, yet you can't eat stuff that makes you stronger? forgive me DMS but what is LDN?
 
I wish someone else would jump in here and tell you more about LDN, but here goes I'll try.

It is a prescription drug - Low Dose Naltrexone, it has been around since the 80's and was used to get addicts off of Heroin at 50 mg/day. There have been some limited trials showing that it works for some people for auto immune diseases, but it is difficult to get because it is not FDA approved for Crohn's (or any other autoimmune disease), also because it is only prescribed at 4.5 mg / day the drug companies will not fund trials for it, it's 20 year patent has run out - so the drug companies do not make much money on it- again no funding for trials.
When I went to my son's GI with info on it in August I was told he didn't recommend it but would look into it, never heard from him again. I ended up getting it from our Naturopath but because the way the health system works here in Canada I had to pay for it out of pocket (about $57/month). If I get it through the GI my hubby's health care picks up the bill.

Back to the GI yesterday, Mitch's blood work is SO much improved, the interesting one is the imflammatory markers. In March they were 82, in August they were 46, yesterday they were 12 - normal range is <12. Also his white blood count has come down into normal range. The only thing slightly high is his Total Protein, but even that has come down significantly.
Also his abscess has changed from a very swollen 5 cm to a flat 1 cm. Still draining, but again so much better.
So the GI gave us a prescription for 7 months and we are to check back with him at that time.

From all my reading and research it takes about 4 weeks to kick in and can cause some very vivid dreams, Mitch had a few of these, also if you have an overgrowth of yeast it does not work as well (if at all), so address this first.
We used a product called Candacin, by Seroyal (purchased from the Naturopath) and it has helped immensely - I also have yeast problems from time to time and have been on all sorts of rx for it, this has worked the amazingly well for me. We put Mitch on it before starting the LDN just to make sure the LDN had the best chance possible.
I have also read if you have a gluten allergy (not just an intolerance) LDN will not work for you, I don't know how true this is, just what I have read.

So, that's our experience with it, *fingers crossed* that it will help get rid of this abscess and fistula as this is the last of Mitch's problems (right now).

Mitch is also on the Specific Carbohydrate Diet, very committed to it, as I've said before I think it helps when someone else does the cooking for you and you just eat what's put in front of you, the only thing we cheat on is chocolate chips - I make them from pure unsweetened chocolate add honey and coconut oil then spread it out in a pan and freeze it, break it up and use it in muffins. My kid cannot live without his chocolate - but sugar really messes him up. Hopefully he will get to a point where he can cheat occasionally, but not right now.
Sorry for the ramble.
Donna
 
DMS if its not FDA approved how can they prescribe it, and even more so how did you manage to get it from a naturopath?
 
LOTS of drugs are prescribed for conditions which they are not FDA approved.
Cipro for children is not FDA approved, Mitch has been on it twice, Dr's do it all the time if they feel it is safe and the benefits outweigh the risk. Also, patients will do their own research (as we did) and go armed with information and often change multiple dr's to get the drug that they think will help their condition.
Not sure where you are located but in BC Naturopaths are allowed to prescribe *some* prescription drugs, our Naturopath has it compounded and brings it in himself and sells it anywhere from a 1.5mg to 4.5 mg strength, not sure if he is going around the system or not - so I'm not going to rat him out here- but we are so glad we could get it from him.

Our GI in Vancouver is the head of children's GI at BC Children's hospital and he told us yesterday that he has one other family that wants to go on LDN as well - that is his experience with it. Obviously he is not to willing to go outside the FDA approval either which is a good thing in most situations, BUT LDN is a very safe drug - and if all they are doing is trying to find a drug that works for him, why not try a super safe one?? He was very agreeable to prescribing it after reviewing both the blood tests and checking the abscess - oh wait, maybe he was agreeable because we had to wait 2 hours to see him and it was 6:15 and he wanted to get home!!! I don't know.

Again, it is like every other Crohn's drug out there, it works for some and not for others, BUT unlike many of the drugs it has almost no side effects and you can be on it indefinitely. It is also an endorphin booster, we noticed within the first week that Mitch's moods were better and he was better able to deal with all that this disease has thrown at him. If for no other reason than that for us it was worth it to try it.
 
LDN works by temporarily blocking endorphin receptors in the brain. This action is why it was used to prevent a high from drug use. This causes our body to produce more endorphins since it cannot detect any. Our dosage is a fraction of the "drug abuse" dose.

This increase in endorphins causes the immune system to work better or more properly depending an who you ask.

Off label use for drugs is not uncommon, but usually there is a drug rep encouraging this type of use. LDN is pretty much an orphan drug, that most doctors are unaware of.

Dan
 
Hi,

My husband and I have been doing some research pertaining to ulcerative colitis. In doing so we have recently stumbled across LDN. I have just read the above posts. There is nothing new after December and I'm wondering if there has been any more news regarding any of your experiences with LDN since?

My current meds which have kept me at bay for 14yrs. are not working anymore and as usual I can't get in to see my G.I. for awhile. I'm considering meeting with my G.P. (who is very open-minded) to discuss LDN. But, first I want to arm myself with some data to give him.

I appreciate any feedback you can give me.

Sincerely,

Kristi
 
Since we have an auto-immune disease, do immune boosters make us more likely to have more symptoms? It's so weird to think about because I want to take herbs like echinacea during cold/flu season but that could make the crohns worse no?

I think it depends if you are on immune-suppressing meds or not. If you are suppressing the immune system to make your symptoms better, would you take the chance of boosting your immune system to cancel out the properties of the meds? Not sure I can answer the question.

There are also different immune supplements that boost different part of the immune system, and different meds suppress different parts of the immune system, so it would depend on which med you are on, and which part of the system you want to boost. I think it may also depend on how long you want to take the immune booster. Shorter doses may be alright.

Personally, I am on Humira injections, and I do use echinacea for colds/flus, with no apparent issues. But talking to my naturopath, he doesn't recommend ColdFX for me, as it has ginsing in it, which apparently boosts the part of the immune system the Humira shuts down, where as just echinacea doesn't.
 
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I have been on LDN for over three years. I am still about as healthy as anyone else my age, and more healthy than many.

Nothing to report other than normalcy.

Dan
 

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