Last reply 1 year ago
Diet following lemtrada??

Hello everyone, my Mother in law is finishing up her first round of lemtrada treatment tomorrow. She was told to avoid deli meats, blue bell icecream and anything that may have bacteria or listeria. We know obvious ones like don’t leave things sitting out on the counter for any length of time, all meats completely cooked through, we’ll washed fruits and vegetables, and no food from deli areas, such as subway or a meat counter. However, she seems to think lunch meats are fine, I say she should avoid them. So I thought I’d ask here, are they the same? If so what makes them something to avoid following treatment? And what other diet rules should she follow?

Thanks for all the help! We are in the US if it makes a difference

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1 year ago

My ms nurse told me to avoid lunch meats and just another one to add in the UK some farmers are happy to sell milk directly from the animal unpasteurized known as raw milk. I don’t know what its like in USA but if raw milk is available avoid it. Massive risk.

1 year ago

I don’t think she’s willing to cut out foods she likes because she makes the argument “well you never know with anything you buy in the store etc.” I am trying to prove my argument but ultimately she will do what she wants and that’s fine, I just fear for her that the one thing she deems okay will be the one thing she gets sick from. We do have raw milk sources here but don’t buy it anyway, is regular 2% milk fine and regular cheeses you can buy in the stores? What about canned goods, such as canned vegetables, canned beans etc.?

And best advice on how anyone avoided illness?

1 year ago

I was told no lunch meats, no unpasteurised items, no soft eggs, no soft cheese, no fruit smoothies nothing from a deli counter and no ready-to-eat items sold in stores, as you just don’t know how it’s been prepared! I’m finding the diet very strict but it’s definitely do-able x

1 year ago

As long as the milk is store bought and been though the pasteurized process its fine. You do need to get though to her though because if she gets listeria she doesn’t have sufficient immune system in place to fight it off because of lemtrada removing the lymphocytes. My ms nurse told me two of her patents ignored the food advice and got listeria. One ended up in hospital for 8 weeks getting lots of iv drugs but did go onto make a full recovery and one unfortunately died. Listeria is very serious and it would be a hell of a lot worse in people with week immune systems. They give the food advice for good reasons. I am finding the food advice a pain I love certain items on the no go list and not long had my lemtrada 2nd round but at the end of the day I want to see my kids grow up and for the sake of missing some foods for a few months it’s a price worth paying.

1 year ago

So I did a lot of research and found a neutropenic diet is good for chemo patients because of the low immune system. I asked her nurse the obvious questions about the deli meats and things like that, but also asked about the neutropenic diet and she said that was probably the best diet she could follow coming home from lemtrada treatment. Although she won’t have to be so strict on all the diet rules since she isn’t receiving chemo actively fruits wouldn’t interact with the meds. Just avoid anything without a shell for the first 5-7 days, and then she can loosen up on those. I’m basically giving her no other choices because I will be the main one preparing her foods. She will only prepare her own breakfast, and lunch if she feels hungry.

Thank you all for the help!

1 year ago

Yeh I would take the diet advice very seriously. I’m due for round two in April and saw my neuro a few weeks ago to sign consent forms. He said they’re upping some safety guidelines as they have very sadly had a fatality following Lemtrada from Listeria recently. Don’t get put off her having the treatment but just get her to take the diet and cleanliness advice really seriously. Deli/lunch meat is a no.

1 year ago

The risk of infection with things like listeria is really high with things like deli counter lunch meat. As has been said, there has been a fatality with Listeria in the last year which has resulted in the message about taking great care with pre-prepared foods being so very strongly reinforced.

It’s not for ever, but it is extremely important to be very careful am minimise the risk from pre-prepared food which carry such a high risk of infection.

1 year ago

I am going in for my second round of treatment in May and have been told to follow the “pregnancy diet” pretty much what everyone has said above and specifically not lunch meats. I’ve actually been told to start the diet two weeks prior to receiving the treatment and to then continue following for 3 months afterwards.

I hope your mother-in-law decides to listen to you!

Good luck.

Ok hi !! I’m Angie MS rr.
YES stay as far away from processed meats as u possibly can for all ur family !
Most /many Meats now have a packer in them to keep them red plump & fresh looking these packers ATTACK the blood cells & are unable to register the difference between live blood ( humans ) & dead blood cell they were put into for shelf life .
Vegitarian is the best way forward & look into neutralising your diet , I use Laura Wilson as she’s such an easy read & give web page talks to help too!!!
Also check out Jason vale juice me diets
& neals yard book via amazon Gives insiteful tips on each health need
Good luck & stay positive

Ps !!! I have spent 3- 4 years researching the verious diets @ uni & am currently producing art work on the subject , my masters in research i hope to be able to afford next year 2018.
Any questions msg me
There is shed loads of research available to print off as evidence for you & ur mum-in-law to read !
Very best wishes ,
stay positive you can win!

1 year ago

I am starting Lemtrada on Monday and have been trying to find a comprehensive list of things not to eat. After reading all of your posts one thing I was told was a No No but did not see (if it is here and I missed it I apologize) is fruits without skins, like berries & kiwi. I am having the hardest time trying to figure out what to bring for lunch, I’m down to stuffed shells on Monday(left overs from Easter dinner), then pasta with more sauce left over for Tuesday, after that I’m left with Peanut Butter & Jelly. Any ideas?

1 year ago

I start on Monday and was worried that I’d been advised to go on a pretty strict diet but nobody else had, so seeing this thread has made me more confident that it is the right way. Rather than regular meals, I tend to just eat from the same pan/plate of food all day, so preparing single-serving will be a challenge.

Losing salad in spring will also be tough. I’ve already got some alcohol alternatives. Also going to try to stay away from take-aways and eating out as I can’t be sure about how long their food is kept out. If in doubt, there’s always cornflakes.

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