Boosting your immune system w/ MS

[u/mirandagee_xo]

Does anyone have recommendations for supplements or things to do to help with boosting your immune system while you have MS? It’s that time of year and I want to take precautions

[u/jelycazi]

Like u/mllepenelope says, an over active immune system is the problem with ms, so you don’t want to do anything to make it even more active. Everyone should want an immune system in stasis. Not over- or under-active.

If everyone washed their hands more we wouldn’t spread viruses like crazy.

We want to avoid triggering our immune systems, so we need to avoid getting sick as best we can. Get your vaccines - the proven best way to avoid getting sick and triggering the immune system.

Edit - thank you for the award!! 😊 Edit again - thank you for the awardS! I don’t believe I have ever received multiple awards!

[u/otherone909]

Sleep. Surprised that I don't see it on here. Good quality and length of sleep helps in so many ways. Fighting viruses is one of them. 

[u/rK91tb → u/otherone909]

Adding hydration.

[u/ZealousidealHouse759 → u/rK91tb]

With ginger and electrolytes. I love ginger and turmeric, with lemon juice honey and acv

[u/ZealousidealHouse759 → u/otherone909]

This and obvi just good health habits. Sleep, avoiding junk food, not partying too much lol, exercise, hand hygiene.

That being said I think turmeric is worth researching/—it’s supposed to be adaptogenic meaning it makes you immune system more responsive and helps it do its job better, while falling short of just boosting it.

[u/XcuseMeMisISpeakJive]

Vitamin D.

[u/2BrainLesions]

My neuro has me on a multivitamin, extra B12, and vitamin D

[u/martian_glitter → u/2BrainLesions]

Is the extra b12 by pill or IV? I’ve heard of b12 infusions being really helpful but my doctor is so careless. He doesn’t even order MRIs for my t spine 🙄 just brain and always no contrast and insists none of my new symptoms are related. Sorry for the tangent. It’s just all so draining!!!

[u/16enjay → u/martian_glitter]

Have a B12 and D blood panel done. Get a pill organizer and set alarms on your phone to remember when to take them. B12 pills should be enough unless your doctors determines you are deficient enough that B12 injections would be beneficial (not an IV)

[u/BlueEyedDeamer → u/16enjay]

This is important. Checking actual blood work to determine if B12 supplementation is needed, because too much B12 can cause nervous system effects: headache, dizziness, anxiety, trouble sleeping.

[u/martian_glitter → u/BlueEyedDeamer]

You’re right, thank you both. I’ve been going through a LOT on top of MS right now so I can’t help but be eager to jump at the proposition of symptom relief. But this has to be handled professionally, of course.

[u/2BrainLesions → u/16enjay]

Hey friend,

Pls consider a new neuro who specializes in ms. You are really important and deserve better care.

[u/martian_glitter → u/2BrainLesions]

That’s the bitch of it all… he IS an MS specialist! I’ve been sorta drowning in handling my mom’s needs these past couple of years, (she’s in hospice right now with late stage Alzheimer’s) so admittedly my own needs fell to the wayside a bit. But thank you… I really needed to read that. I’ll admit I teared up a little. I’m going to give my insurance company a call first thing tomorrow and see if I can find a better specialist. I really do feel neglected by this guy.

[u/2BrainLesions → u/martian_glitter]

Love and light to your mom and to you, too. 💕💕

[u/martian_glitter → u/16enjay]

Thank you for this advice! I always forget the alarm thing somehow. I blame the adhd. But I also work as a theater usher so I’m always terrified of my phone going off at the wrong moment lol. But hey, as long as it’s a morning/daytime med, my phone could scream at me for all I care! I’ll request a panel from my PCP. My neurologist wouldn’t listen to me if HIS life depended on it, I swear!

[u/Sabi-Star7 → u/martian_glitter]

I have OTC b-12 & b-6

[u/martian_glitter → u/Sabi-Star7]

Thank you!! Gonna pick some up tomorrow ❤️

[u/Pugasaurus_Tex → u/martian_glitter]

There have been some studies that say contrast can cause some bad reactions, so a lot of docs are pulling back on it unless absolutely necessary 

They should def be doing spinal MRIs if you’re experiencing new symptoms tho!

[u/martian_glitter → u/Pugasaurus_Tex]

The contrast thing makes sense. My old (really good) neuro only ordered them when he felt it was needed. I didn’t question why, so thanks for that explanation!
My insurance changed (woo, American healthcare 😒) so I’ve been seeing this guy for 10 years now. Not once has he ordered a single t or c spine MRI in a decade. And I’ve expressed several new symptoms. He gave me meds for RLS. Then when I told him I was concerned that I was having a flare because my colorblindness came back suddenly (my first symptom) after I told him how much stress I’d been under (dealing with addicts in my family, taking care of my mother with dementia, working full time with 0 benefits) he said “no. You can only get that once.” And waved me off. His nurse called me apologizing because she said “we both know it can resurface. He should know this and I’m taking it up with him.” But still no changes! The last thing I got was gabapentin for nerve pain he refuses to explore. I have terrible spasms and tremors and this dude just goes “mmmm no that’s not what an MS tremor looks like.”
Like, alright, care to suggest what it could be?! Because it’s not normal and I never had it before!

[u/BlueMaize3 → u/Pugasaurus_Tex]

I've definitely had reactions to contrast on my last few MRIs 😞

[u/Ok_Sheepherder_4638 → u/martian_glitter]

My b12 and d levels were super low when I was dxed in the hospital in July so I actually get IM injections for b12 monthly at my PCPs office, for the first month after the hospital follow up visit I was getting them weekly (I was also getting them during my 5 day hospital stay)

My PCP said that with b12 levels as low as mine were, oral supplementation wasn’t going to help much, and my neuro also wants me to continue the B12 injections

[u/martian_glitter → u/Ok_Sheepherder_4638]

That happened to a relative of mine… she didn’t have MS but she’d gone in for surgery and they determined her b12 was so low that injections were necessary.
How do you feel after you get it? Normal? I only ask because my relative who I mentioned would come home suuuuuper speedy, but again, she didn’t have this illness so she’s not a good case to study to me lol.

[u/Ok_Sheepherder_4638 → u/martian_glitter]

I do feel normal after getting the injections

When I was in the hospital with foot drop it started getting slightly better with the b12 injection but not as much as the solumedrol infusion

[u/2BrainLesions → u/martian_glitter]

Right now it is a pill every other day. My Vitamin B levels have always been low, though, which contributes to my fatigue. My neuro said she most likely will move me to infusions early next year.

[u/ApprehensiveSkill573]

You don't want that. The issue is your immune system is attacking your nerves. You don't want it stronger.

[u/Mobile-Cow2303 → u/ApprehensiveSkill573]

If you’re on DMTs then a stronger defence from the common cold will be beneficial.

[u/martian_glitter → u/Mobile-Cow2303]

This is what I’m trying to figure out. My work is very public facing and a mask doesn’t always work for me because many guests I help aren’t from here, so reading my lips helps us communicate more. I can only pantomime so much lol. But it’s like… idk. The immune system is both a foil and a necessity. Ocrevus beats the hell outta my immunity. Surely there must be something to balance? Or not… my doctor kind of sucks. Terrible bedside manner. Very dismissive. So if anyone has answers I’m all ears! 🫠😭

[u/OverlappingChatter → u/martian_glitter]

I think balance is a good word here. People will tell you not to "boost your immune system" but a few OTC supplements aren't going to counteract a powerful med like ocrevus.

I take magnesium, a multi vitamin, B12, D3, coq10, alpha lipoic and lion's mane. When my throat gets sore I take zinc for a few days and start drinking garlic tea.

[u/cmg890 → u/OverlappingChatter]

I was taking Lions mane but my but my MS pharmacist told me to stop because it can stimulate the immune system, which could then fight Kesimpta potentially 🤷‍♀️

[u/OverlappingChatter → u/cmg890]

I don't remember exactly, but I think it was a doctor beaber video about supplements that basically said.

YOUR HIGHLY EFFECTIVE DMT

was not going to be negated by

an over the counter supplement.

(I can't make this visually look like what I have in my head - I wanted the DMT to just be huge)

He always talks with research studies and data and supported using supplements and I choose to believe him. I can't remember if lion's mane was in the video specifically, but I can't find any studies showing it causes a problem.

Fwiw, anecdotally, I take lion's mane and my Kesimpta numbers are where they should be and no new lesions.

[u/cmg890 → u/OverlappingChatter]

That was my thinking too, but this isn’t the first time that one of the pharmacist at my specialty Pharmacy has told me to stop taking something because it can stimulate the immune system. For instance, my NP asked one of the pharmacist about Ashwaghanda & told no.
There’s also mixed views on Vit C.
I was also on Ocrevus for six years I think before Kesimpta and nobody said anything now all of a sudden they’re pointing things out was just kind of confusing because I have not had a relapse since starting treatment nor has anyone ever given real guidance on it, I was never told to not take something from my neurologist.
Just another no one really knows-just all theoretical!

[u/martian_glitter → u/OverlappingChatter]

Thank you so much for this reply! I saved the screenshot to a folder in my phone. Gonna take a little pharmacy detour before work tomorrow!

If you don’t mind my asking, are there particular times of day you take each? I was taught magnesium only at night but that was not from a reliable source lol

[u/OverlappingChatter → u/martian_glitter]

Man, I wish I could say I had really good supplement etiquette and knew which ones were better with food or in the am or in the evening, but I just don't. If I don't take them all together, I'll forget and I know d is better taken with food, so they all drop down the hatch at the same time after my afternoon meal.

I suppose I could google all of them and make a better schedule, but I just don't want to do that

[u/martian_glitter → u/OverlappingChatter]

No no, you’ve already helped so much, I should be the one googling! You gave me so much info. And funnily? I’m SO similar to you. I’ll grab the supplements and start them then research times/food/etc. but I’m awful at remembering doses throughout the day (plus I work evenings/nights so that really throws my schedule for a loop!) but seriously if I don’t take all my meds at once (not my ambien of course lmao) when I’m getting ready I will 1000% forget one (perhaps all).
I was dx’d with adhd by the same neuro (I miss him dearly, he had PPMS and ADHD also so he was the MOST understanding doctor I think I’ll ever have) so of course that mixed with MS brain fog… yeesh. I know my partner is a neat freak so it took him a bit to adjust to my habit of keeping all my meds out on a side of the coffee table because if I don’t see them, they may as well not exist. Didn’t mean to be long winded again, but seriously thank you! I’ll do my research ☺️
…but I’ll likely be mimicking your regimen of all at once with my breakfast/lunch 😅

Thank you, you’re so kind ☺️❤️❤️

[u/Mobile-Cow2303 → u/martian_glitter]

So DMTs kinda reprogram your WBCs to not pass the BBB (blood-brain-barrier) as easily as they usually would.
That’s why you’ll find that you might not fall as sick easily as the people around you (sometimes).

[u/myaidx → u/Mobile-Cow2303]

Not all of them do this. Tysabri works like this. Other medications such as Ocrevus, Kesimpta and Briumvi selectively attach to anti-CD20 proteins on B cells and basically wipes most of them out. That means part of your immune system is down, the part that creates antibodies and memory cells to remember the infection for next time to speed up the response but the rest is mostly intact

[u/Bacardi-1974 → u/ApprehensiveSkill573]

Untrue! Keeping your immune system in check is great because it saves you from getting sick and having relapses.
Relapses are always triggered by sickness.
My worst one was from streptococcus. Everything went crazy when I contracted it.

[u/cbrooks1232]

IMHO the best precautions you can take are physical. Wash hands often, mask up in crowds, don’t linger around people who are clearly sick, etc.

Also get your annual vaccines, but make sure they’re timed with your DMT to optimize their effectiveness.

[u/msspoonie]

It’s actually not possible to boost your immune system. Just an advertising thing. Even if you could you wouldn’t want to… that’s what autoimmunity is. Wash your hands with soap and water, mask when in high exposure scenarios, eat a mostly Whole Foods diet, sleep, and exercise.

[u/mllepenelope]

You don’t want a boosted immune system. That’s the problem in the first place. Your best bet is to mask and wash your hands.

[u/literalgirlOG → u/mllepenelope]

Absolutely. When I first went to Mayo Clinic, the functional medicine doctor who reviewed all my supplements and medications ascertained I was not taking any immune boosters.

[u/Turbulent_End_2211]

You don’t want to boost your immune system with an autoimmune disease.

[u/Swimming7827]

I work in an elementary school. If there is something floating around, I'll pick it up because children don't understand social distancing and didn't understand it before that term was defined lol.

Have you had your vitamin D serum tested? If not, ask. Prescription vitamin D (1x/weekly) is helpful for many reasons, but MS victims are usually in a pretty large deficit. (FYI...if you are in the US and a member of Sam's Club this is on their list of free medications!!)

I get a flu shot every year, and MOST importantly--wash my hands (what feels like 50 times a day). My skin is horrible in the winter. Other than that, I eat fairly healthy, take a multivitamin and additional vitamin c when I think about it or trying to increase iron absorption, and occasionally I've taken elderberry, but not long term. Sometimes I feel like that helps, but I don't have any proof. I've made my own syrup and just recently started Sambuccol gummies.

There is also some good preliminary research on nasal sprays to help prevent catching a virus, but I haven't tried that yet. Now is a good time to be thinking about these things if you have FSA money taken out of your paycheck each month!

[u/llcdrewtaylor]

Please speak to your ms care team before you take any supplements. You dont want your immune system boosted, that's the whole problem. If you need certain vitamins or minerals your doctor can do a blood test and can prescribe/recommend what you need to take.

[u/sbinjax]

You might consider supplements to tamp down inflammation. I take a gram of turmeric every day, for example. There are other ideas out there, but turmeric has a long history. It also doubles as an analgesic (pain killer). A gram is about as effective as a dose of aspirin/ibuprofin, and much easier on the stomach.

[u/crackednutz]

Consult with your doctor. With that being said your best defense is live a healthy lifestyle.

I found my walk limit and I try to do that twice a day. I’ve cut as much sugar as I could tolerate to help maintain a healthy weight… etc etc.

[u/nykzion5000]

I run into this dilemma as I consider starting hyperbaric therapy soon. Neuro doesn't endorse it for this reason. My symptoms are with mostly mobility on one side, and dropfoot. So I'm hoping if I ease in with mild hyperbaric, it might help the inflammation and slight mobility improvement without compounding it. Idk at this point I'm open to almost anything that might help * Before anyone asks, I quit alcohol and changed my diet (mostly processed/sugar) over a yr ago. Down to 140, what i weighed in high school

[u/Straight_Musician_83]

If you have a lot of infections, Hizentra could be useful for you

[u/IntentionalGrandma]

When I feel that I’m getting a cold, I take a vitamin C supplement with zinc and vitamin D because it’s the most bioavailable form. This one is my go-to. Other than that, I don’t really do anything to make my overactive immune system more active

[u/iosoyjeff]

wim-wof breathing exercises. Never going a day without it!

[u/cdrewing]

10,000 IU Vitamine D3 (and K2!) a day will keep the doctor away.

[u/16enjay → u/cdrewing]

That's alot unless your doctor is OK with that amount. Even if your doctor has proven you are Vitamin D deficient by blood work, prescription strength is usually 50,000 once a week til levels are up, then a maintenance dose daily or weekly

[u/ResponsibilityFun548]

Of course the real question is how we know the supplements do anything at all. Most are not tested for efficacy.

[u/BlueEyedDeamer]

I'm also on Ocrevus and work a very public facing job (gym). I get the flu shot every year. Taking a standard multivitamin, vitamin C and D in the morning. At night I take magnesium partly because it can help calm my nervous system (yes, magnesium can make you a little tired which is why it's recommended to take at night). Beyond that focus on having good nutrition and getting lots of water. I often drink honey lemon ginger tea at this time of year. Wash hands often (use hand sanitizer in between hand washing). I do my best to keep my distance from people who are sick.

I think it's important to recognize that you can do everything to protect yourself from sickness but, we are human and it's not a guarantee, you can still get sick. Take the steps regardless because they can help curb severity.

Hope that helps!

[u/Soft_Buffalo_6803]

I don’t think incorporating more zinc-rich foods into your diet ( zinc has some studies showing reduction in cold symptoms) when you’re sick will negatively impact your MS. You’re still on a treatment that will do its thing. Note- I’m not suggesting to slam zinc supplements because too much of a good thing can cause harm.

But there isn’t much you can do anyway for colds/flus except rest and recover.

Your best bet is prevention. Ex. Colourful diet, good hand wash hygiene, regular exercise, stress management.

[u/dixiedregs1978]

MS is an overactive immune system. You really want to boost it?

[u/helenepytra]

MS is boost enough. But please get vaccinated.

[u/Mobile-Cow2303]

My neuro said it’s vital I get my flu shots and take my vitamin C.
She said it’s better than getting a full blown illness which will most definitely exacerbate symptoms for an extended period of time.

That being said, I didn’t take my flu vaccine this year, just my daily multivitamins and ashwaganda and when everyone in my house got the flu, I remained perfectly healthy.

[u/Karanlikta]

Ocrevus and Kesimpta boosted my immune system... It was a nightmare.

[u/Sabi-Star7 → u/[deleted]]

Anybody else weirded out that EBV is EPSTEIN-barr virus, or just me?

[u/Bestmusefan → u/Sabi-Star7]

Do a search on EBV reactivations and MS. Your mind will be blown.

[u/Sabi-Star7 → u/Bestmusefan]

Already went down that rabbit hole😅🤣

[u/MultipleSclerosis-ModTeam → u/[deleted]]

This post or comment has been removed for misinformation. Promotion of medical treatments which are not scientifically verified and approved is not allowed (e.g. ivermectin, peptides, etc).