nitshel Posted December 16, 2013 Report Share Posted December 16, 2013 All, I'm wondering what people have found to be really effective supplements / food items for boosting the immune system - apart from a wholesome diet and some exercise of course. I'm also not referring to IVIG treamtments which could be a late resort option. As we begin to embark on long term Abx , I want to provide DS with every advantage we can muster. From what I've seen Immune supplements are just mult-vitamins in a fancy bottle - are there exceptions to this rule? Link to comment Share on other sites More sharing options...
pr40 Posted December 16, 2013 Report Share Posted December 16, 2013 I am interested in other answers to question but also want to try and answer it myself: Do we really ever boost immune system? or do we do something like lower inflamation which then leaves resources for the immune system helping it work better? so, any anti-infammatory would fit the bill. and they can range from ibuprofen to olive leaf, cq10, improving methylation, and so on. Link to comment Share on other sites More sharing options...
nitshel Posted December 16, 2013 Author Report Share Posted December 16, 2013 Good question pr40. I guess I was reacting to the phrase (in several threads) where I read that Lyme "supresses the Immune system". I don't think people meant that from an inflammation perspective only - but I could be wrong. I've also read the Lyme tends to hide where the immune system cant get to it. It also hijacks B cells in the Immune complex - again making it hard for the immune system to seek and destroy. Link to comment Share on other sites More sharing options...
qannie47 Posted December 16, 2013 Report Share Posted December 16, 2013 I agree with pr40 with similar thoughts. As we have learned that the problem is not about ramping up the immune systems but more about mis-guided T cells. I know that when I subjected my ds to 9 acupuncture treatments which is a known booster for the immune system, it resulted in a very bad episode. Tumeric, I have read on this forum is a great anti-inflammatory. I think our approaches should be more about trying to keep the system turned off by keeping our kids healthy and of course finding ways to minimize inflammation. Link to comment Share on other sites More sharing options...
rowingmom Posted December 17, 2013 Report Share Posted December 17, 2013 Stephen Buhner believes that both immune support and decreasing inflammation are important in healing lyme and it's coinfections. For immune support he suggests astragalus, but only at very LOW doses (somtimes it can't be tolerated at all) for lyme. We use 500 mg 3x weekly. Fairly severe inflammation resulted from using the suggested dosages on the bottle. He suggests cordyceps if you can't tolerate astragalus. We use 1/4 tsp daily of cordyceps. We also use 2 caps of COLDFX (an extract of American ginseng) daily on alternating days from astragalus. They claim that it increases NK cell production: http://cold-fx.ca/health_mechanism.htm While I was struggling with my own symptoms (the cause of which were unknown to me at the time) COLDFX fixed me up nearly every time. We use 1/4 tsp TID japanese knotweed tincture and 1/4 tsp TID japanese knotweed powdered herb in decoction for inflammation. This seems to work well for us. While all around her in class were falling one by one to Norwalk, DD had a little nausea this morning and this afternoon but now feels fine. No flares either. Here's hoping my immune system is functioning as well as hers . Link to comment Share on other sites More sharing options...
MaryAW Posted December 17, 2013 Report Share Posted December 17, 2013 Vitamin D3. Get your child's level up to 50 - 80 ng/ml and you will definitely see an improvement. Link to comment Share on other sites More sharing options...
LNN Posted December 17, 2013 Report Share Posted December 17, 2013 We saw the biggest bang for our buck - less illness, faster recoveries from colds etc - with zinc, D3 and C. My son has a zinc deficiency and takes 40mg/day. My daughter doesn't have this genetic deficiency (called pyroluria) and gets by with 10mg/day. Like MaryAw, we test D levels periodically and shoot for above 50, ideally 60-70 range. We use 500mg vitamin C daily, upping to 1000mg when sniffles come on. There's a "home zinc" test Dr James Greenblatt says you can do - drink 10ml of liquid zinc and if it has a metallic, unpleasant taste, you have sufficient zinc levels. if it has no taste, you're quite deficient. If it has a mild taste, you could stand some mild/moderate supplementation. We keep this in the cupboard and do a taste test every few months, and adjust dosing accordingly. http://www.amazon.com/Designs-Health-Zinc-Challenge-Beauty/dp/B000FGXMAY/ref=sr_1_1?s=hpc&ie=UTF8&qid=1387302748&sr=1-1&keywords=liquid+zinc My thinking follows Buhner. I think you need a strong immune system to ward off infections and clear them quickly but also need to control inflammation to limit neuropsych symptoms. Both have been important for my kids. Link to comment Share on other sites More sharing options...
nitshel Posted December 18, 2013 Author Report Share Posted December 18, 2013 Thanks so much LLM - will buy the zinc taste test kit right away. So I presume that your son could not taste the liquid but your daughter could taste it just a little -but in either case they did not find it "unpleasant" to taste - right? Link to comment Share on other sites More sharing options...
LNN Posted December 18, 2013 Report Share Posted December 18, 2013 Well you have to realize that my daughter thinks many things - from white milk to carrots - taste gross. So she thought the zinc was disgusting. But from what I could gather, in that she said "bleh" rather than rushing to the bathroom sink to purge her mouth of all traces, she was mildly deficient and now takes 10mg of zinc daily. (she tested borderline for pyroluria 2 yrs ago). My son, who has tested definitely positive for pyroluria, said "what's that taste in the water?" in a mild, vague way. He had been taking 20mg of zinc and when I upped it to 30mg daily, he then said "ew, that stuff's gross!". So I know that on most days, I should give him 30mg and once or twice a week I only give 20mg. My DH and I take 50mg daily because we can only vaguely taste the stuff in the zinc challenge. But I don't want to go higher than that on a regular basis. So if you're not deficient, you'd probably think it was like putting aluminum foil or a penny in your mouth - you'd get an unpleasant metallic taste and you'd want to eat something or rinse to get rid of it. But it won't make you wretch or get violently ill. However, drama queens and kings would likely give you good show. In that sense, it's a pretty good test. It's pretty easy to tell if someone tastes something. Link to comment Share on other sites More sharing options...
T_Anna Posted December 18, 2013 Report Share Posted December 18, 2013 Has anyone tried Reishe Mushrooms? Integrative doctor wants to add this: http://www.webmd.com/vitamins-supplements/ingredientmono-905-REISHI%20MUSHROOM.aspx?activeIngredientId=905&activeIngredientName=REISHI%20MUSHROOM Link to comment Share on other sites More sharing options...
4Nikki Posted December 18, 2013 Report Share Posted December 18, 2013 Tried using some stuff from Canada recommended by Stanford and the supplement comes like alka selze tablets that dissolve in your drink but DD had episodes. Link to comment Share on other sites More sharing options...
nitshel Posted December 23, 2013 Author Report Share Posted December 23, 2013 OK - so we got the Zinc challenge in the mail and I gave DS 2 tea spoons (not table spoons as the bottle suggested) to gauge reaction. He said it was mildly weird - "vague taste of berries". An hour later he threw up a little..... Not sure what to make of this. Nothing else in his diet or medicines had changed so I'm putting the vomiting down to the zinc...anyone had similar experience? Does the "mild" nature of taste means he could use some Zinc supplementation? I can try and give it to him again - maybe slip it into his lemonade or something - hoping he does not throw up again..... Link to comment Share on other sites More sharing options...
LNN Posted December 23, 2013 Report Share Posted December 23, 2013 I use 10 ml - which I think is 2 tsp. Based on how he described the taste, if you decide to supplement, I probably wouldn't go higher than 10mg. (I take 60mg - which is on the high end but I have pyroluria). He seems "mildly deficient" based on how I've read Greenblatt describe things. As for the throwing up, it could be a with or without food thing. My DS needs copper - both because he supplements a lot of zinc for pyroluria, which can deplete copper, and based on lab work. If he takes copper with food, and without any other supplements, he's fine. If he takes it on an empty stomach, or with other supplements, he gets very nauseous and/or throws up within 15 min. So it could be that your DS would handle it better under one set of circumstances but not another (i.e. maybe he'll do ok if he takes it with a meal but not on an empty stomach). Link to comment Share on other sites More sharing options...
norcalmom Posted December 24, 2013 Report Share Posted December 24, 2013 After reading Bruhners books I learned at least one thing. Herbs and supplements can effect your immune system. Some things up regulate certain responses( like t-1 dominance, or IL -17) and some up others. Or down regulate them. It's very complicated. From the latest research that Agalliu is doing, as well as reading about MS-(personally think THIS is the disease pandas most similar to, not syndenham chorea- although SC was good starting point) we need more info on what reactions are specifically out of whack in our kids before doing a bunch if stuff. I got all excited and bought a host if supplements, then I got cold feet, because I think you really need to be under the care of an expert like Bruhner if you aren't 100% sure of exactly what you are treating. In the end I ended up using just a couple in addition to our usual stuff(d3- because DS was low, and all the MS research on it, occasionally IRON- DS low ferritin, and Bruhner says you need to be strong- if infection "eating" the iron, the answer is not to starve the infection- answere to give enough for you to feel better!, and some probiotics, and occasional methyfolate - deficient in that ) So the few I liked the best and seemed the most benign were EGCG- this is an immune regulator. It's green coffee extract. Doesn't significantly increase or decrease any thing- it balances. Yucca root- take with high protein meals- lowers high amonua levels( which my son had/has ) And Resveratrol. I forgot why that one, but it's one I occasional throw it in the mix, although we use EGCG much more. And liposodal curcummin. That's just an antiinflamatory that can permeate the BBB, and you can give it everyday, to keep inflamation down. When my kids/ family are on verge of a cold I give all of us Sambucus( elderberry extract) it claims to be the only thing that has studies to back up its claims as far as "immune boosting" powers. And when I say that here- I mean specifically protecting against common cold. Many on here are trying to suppress the immune system. Steroids do this- and so does IVIG in a way because your immune system stops production because it is flooded with donor antibodies so it does not need to produce antibodies for a while. And people are doing other stuff now too- like cell-cept and other immune suppressors usually used for rheumatoid arthritis. Unfortunately there is usually one thing out of whack- but our therapies aren't targeted. And in our kids case we aren't even sure what that one thing is. The holy grail is finding that one over producer, and a therapy that can suppress it, without suppressing anything else. MS research is coming very close to this. I digress -sorry- it's a fine balance of proving protection from illness, with out over stimulating the system in your specific situation. (Which varies person to person). Best of luck keeping healthy this winter- Link to comment Share on other sites More sharing options...
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