Hello Everybody! I am wondering how you all handle being around people with colds/flu - my boyfriend is ill with a sore throat and wants me to spend the weekend with him, but usually I try to avoid people with cold/flu - I have a fear of getting sick myself and then having a relapse. Do the rest of you feel this way? I have definitely had relapses following viral infections (i.e. flu), and my neurologists have told me that viral infections can cause relapses. I am wondering if any of you know any more about this, and how you handle it in your lives. Obviously we all get ill sometimes, but I usually try to minimise it as much as possible. Not to mention that getting colds/flu is just an added burden on top of MS anyway. And is there a risk difference between bacterial and viral infections for MS relapses? Any advice or information would be really appreciated! Sending all the best to everyone, kk
Hiya KK I’ve caught my partners cold off him a few weeks ago. At first it was just a normal cold but (although he got better quickly as you’d normally expect) it has stayed with me and got worse and I now have the head cold from hell (even my teeth hurt!) and a bad cough/chest infection and I just can’t seem to shake it off. My MS is playing up but I don’t consider it to be a relapse. I just take it that while I’ve got the cold and my immune system is working hard on it, my MS becomes more active but it’s just how it goes. Once the cold has gone, my MS will settle down as well. (I have RRMS). I’d have avoided him while he had the cold if I could, but living together makes that quite difficult. Sue x
Don’t think it makes any difference whether it’s bacterial or viral. For me it’s the temperature that comes along with colds and flu. My MS goes into overdrive if I’m poorly. I always get the flu jab. Had mine last week! DIdn’t have any reaction to it. You can’t always avoid the coughs and colds at this time of year unless your happy to lock yourself away for the next few months! I have to admit I get slightly ‘OCD’ with the hand washing at this time of year lol! tc Heather x
alls ive heard is that its harder if its virus because of the constant change thats why they have never cured the common cold because it is a virus hope this helps you decide what to do xxx
My wife used to get lots of cold and flue type things during the winter. Since she started LDN some 8 years ago her MS has not advanced at all and she rarely goes down with any colds etc. Not perfect but it has helped
i get offered the flu jab but never take them up on it. This year though i am really thinking about it does it make a big difference? I very rarely get a cold cough sore throat can’t remember getting one last year and haven’t this year. All my family had a terrible time last new year mam dad both got flu was in bed for days, my kids had bad coughs and colds i didn’t pick anything up and if i do it it really mild.Is this strange? my friends and family always say i never seem to get anything much lol. But joking aside should i get the flu jab perhaps i have just been lucky! but when i do get it bam it knocks me off my feet i really am afraid of getting it!!! Tracy x
HI David mentioned his wife has LDN what is it, Ive been told by my neurologist i need meds to get the relapses under control, and one of my children had a cold beginning of the week and ive kept my distance but its hard when you live in family and even when out to avoid catching colds/flu totally agree all the best
LDN stands for low dose naltrexone. This is what I said on behalf of Heather at the AGM in support of resolution 6.6 I will try to answer any further questions you might have:- The clinical potential of Low Dose Naltrexone was discovered around 1980. It was first used as an experiment to treat MS in 1985. I would simply divide MS into two issues, a disease process that causes problems to occur and the resulting long term damage. LDN mainly switches off the disease process in the majority of people who use it to treat MS. It is necessary to adjust the dose to suit individual patients, normally between 1.5Mg and 4.5MG per day to achieve this result. This is the primary technical difficulty in designing clinical trails to prove benefit to licensing standards The primary evidence for the benefits of LDN comes from the several medical conferences that have taken place since 2005 where doctors have given presentations on their clinical experience of treating patients. We are encouraged that the Board’s response has committed to publish other evidence of this type. Sadly this treatment is based on a patent expired drug and the cost of clinical licensing trials is astronomical compared with research funding available outside the pharmaceutical industry. Most treatments routinely prescribed for MS are not licensed for MS - a process referred to as off label prescribing. LDN is just another one of such treatments in widespread use. The post code lottery system is unfortunately alive and well with PCT funding of LDN much like it is with all other treatments for MS licensed or not. Even if you can’t persuade your own doctor to prescribe LDN it is still available from many doctors privately from around £300 a year including prescribing costs. It is therefore one of the few treatments available to almost all who wants to try it.
LDN mainly switches off the disease process in the majority of people who use it to treat MS.
This is nonsense. There is no scientific evidence that LDN switches off the disease process, if only it did! Some people report an improvement in their symptoms from taking it.
Hi so sorry must of mis read your message my brain is not working as it should at the momnet, thank you ever so much for the info all the best
Please note the evidence that LDN mainly switches off the disease progress comes from the medical conferences which was actually said at the AGM as you can see. You may care to listen to Dr Bahrie at the 2005 US conference for instance. If you do not feel that is sufficient evidence then feel free to say so, but since many doctors have said much the same at other conferences it is effectively peer reviewed clinical experience. I personally would regard that as more conclusive than clinical trial evidence anyway, again you are free to disagree if you wish.
Thanks everyone for your posts! I’ve had the flu jab before … it hasn’t affected my MS and hopefully/probably improved my health that year. But I think (regarding Tracy’s post) if you hardly get sick, then why bother? It will influence your immune system, which I always see as a risk. It’s nice to hear that many of you are careful about colds/flu also - I feel like people act as though I’m super uptight about getting sick or get offended. I find it is so hard sometimes to just do what I feel is right, and not what other people want me to do. That’s why this forum is so precious, because I think only people with MS can understand these kinds of issues. I really appreciate all of your time - it means a lot! xxkk
I would just like to explain how LDN works - and it really does work !
I was on awful drugs which had a dreadful affect on my immune system before I found LDN.
The drugs your consultants usually prescribe actually reduce your immune system - they use these drugs because this is the way they were all taught to treat MS.
However LDN actually boosts your immune system which is why a lot of the doctors will not admit it works as it goes against everything they have ever learnt !
My own Neurologist has admitted this to me but is happy to do a private prescription for me as he can see how well I am and is aware that for the 7 years I have been taking the LDN I have had no further relapses (I was relapsing every 1 to 2 years when on Rebif).
Anyway back to how LDN works:
When you take your dose of LDN it boosts your Immune system for 4 hours.
After the 4 hours your body is fooled into thinking there is something wrong as there is a sudden drop in your immune system function.
Your body then automatically goes into fight mode and boosts your immune system itself.
This is the simplest way to explain the process but there’s lots of information on the LDN Research Trust website if you need more detail.
There are also many accounts of success using LDN including my own journey.
Please do not dismiss LDN until you know all the facts, the success rate and the lack of side effects of this amazing treatment.
As for Flu I’m afraid there is no way to avoid it - i always have my Flu jab and some years it works and sometimes it doesn’t - this is a year when it didn’t worked and I am presently into my second week of lying on the settee wrapped in a blanket !
I forgot to mention in my last post that the reason most doctors will not prescribe LDN is because there have been no clinical trials to see its effect on MS even though there is loads of evidence that it works ! The other problem is that the Doctor who first discovered that Naltrexone (which is used in high doses to treat people with drug addiction) when used in a minute dose could control the symptoms of MS, he decided everyone should know and published his findings - a wonderful gesture that backfired ! Because of the publication no drug company will now fund the clinical trials needed as they will not make money from it - other drugs used for MS cost thousands of pounds, LDN costs me £20 a month ! I also believe there is something very wrong when the NHS would rather fund the use of expensive drugs which have terrible side-effects than fund clinical trials into the use of LDN which would save the NHS an absolute fortune !