don't take Echinacea

I recently moved back to Perth from Sydney and have just started seeing a new neurologist. First visit 19/07.
Within a few minutes of being there he asked if I'd had my vitamin D levels checked & has arranged that for me and said if they are low we will get them back to normal levels.
He thought there may be a link to MS but unsure if its caused by MS or vice-verca.
In any case normal levels of vitamin D are needed to be healthy although he did stress that overdoing the supplement may be harmful.
I asked about flu shots and he said in recent tests there has been no evidence to suggest that they connected to MS or relapses.
He said don't take Echinacea because tests have shown that it can increase the likelihood of a relapse.
He has arranged for me to have a visual evoked potential test; good to get a baseline.
Also more Mri's of brain and spine to check the Copaxone is doing what it is meant to.
I asked about the availability of oral treatments in Australia. He said Fingolimod is the most likely and that might happen sometime around 2012. although he wasn't sure if it would be an option for me, at this stage he thought not.
I asked about Ampyra, he said it would be only a very slight help to a few and probably not to me.
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Please Note: Any advice given on OzMS must not be taken as medical advice, it's merely advice given by members from their own experiences of living with Multiple Sclerosis. Always check with your GP or Neurologist or other medical professionals, it's the smart thing to do and only logical! If you have something to contribute please do so, everybody has something to offer.


Comments
You appear to have a decent
You appear to have a decent Neurologist Kev, at least he seems to have an interest in other areas of current MS treatment theories eg. Vitamin D, thanks for tip about Echinacea!
Cheers ;o)
Multiple Sclerosis Portal | Australian MS Info
Breath of fresh air
Hi Kev,
Well I must say, it's nice to hear someone has a neurologist who is open minded. Perhaps I should move in to your place
Only kidding.
Yeah, I know about the Echinacea, but very interesting about what he said about fingolimod. Thanks for the post.
Cheers,
Jodi.
"Don’t judge each day by the harvest you reap, but by the seeds you plant" Robert Louis Stevenson.
echinacea
Kev,
I tried it one winter and it was of no beneficial effect.
Trying grape seed extract in an effort to stave off bronchitis and sinusitis.
Seems to be helping.
Barb
supplements
It was a good reminder to me that the internet is a great place share information ect. but not a good place to get medical advice and no matter how passionate a person might be about supplements they are still drugs and need to be treated with caution.
Echinacea
Hi Kev,
If I were attending your neuro, I would ask "show me the evidence" of a randomised controlled trial that proves that echinacea should not be taken with MS. I don't think there is any proof to that standard. The evidence if you can call it that is mixed and the 'don't take echinacea' statement seems to be based on the fact that this herb is an immune stimulant.
There are lots of sites, essentially non medical, but herbal that say don't take it on the basis of its herbal strengthening properties. However The Best Bet Diet recommends taking eckky because it strenghtens the immune system. So who knows.
I can say that for the past two winters I high dosed on eccky for about 8 weeks (apparently no longer not good), and I didn't get a cold, which was what I wanted.
I'm not doing it this year because I am happy that my Vitamin D level is working well on my immune system. In my opinion herbal and natural supplements are in most cases outside a neuro's knowledge and unless they can show me the evidence or their qualifications in herbal medicine, naturopathy I am going to be skeptical about what is said. I just see it as more a case of them claiming knowledge/superiority over all things medical and a dissing of natural remedies, which they are prepared to do without proof that they do or don't work.
I guess in the end it's up to each individual to sort things out for themselves. I find it difficult when the evidence just isn't there one way or the other.
Helen.
I tend to only take what
I tend to only take what logically could help, I mainly take Vitamin D because I am not out in the sun as much as I used to be and a blood test said I was on the low side so I was deficient, I occasionally take vitamin B because I find it does seem like I get a bit of an energy boost from it, so mainly take it if I need to do something more strenuous like mow the lawn etc.
I haven't had a cold for well I don't know how long, it's been a long time though, I think I have probably had the very occasional virusy unexplainable kinda things but that is quite rare, but I haven't had a full on flu, runny nose sore achey joints kind of cold.
I don't see the point in taking heaps of supplements of any kind, but I do make sure I eat my veggies, I love all veggies, I laugh when people say they "hate" things, eg. brussel sprouts, broccoli, some people I know have only ever heard of peas or beans oh and maybe the odd carrot or corn from a can. I definitely do at times not eat as well as I should but I always have my greens and eat all the veggies most people dislike, I don't need to cover the veggies in cheese or white sauce or gravy, I try to steam them only although sometimes need to boil them in water just cos it's easier sometimes. Oh yes I love margarine on veggies not necessarily bucket loads but enough to taste it at least, I use Nuttelex pulse I think it's called, meant to help lower cholesterol, I use very little salt, although I do use salt on chips (ya sort of have to lol).
So it's got me buggered why people love to take every supplement under the sun, not because they need it but mostly because they have read somewhere that they should take it, not from medical advice, not even on the advice of a naturopath, they just read it somewhere, like seriously, just something you heard or read, no blood test, no medical or scientific evidence at all.
So no I have never gone to a shelf full of herbs and supplements and started reading what they are "supposed" to fix, I would prefer to try and eat the right foods that we need you know what humans ate before we had "supplements", only using supplements when a GP or naturopath (possibly) diagnosed me as being deficient in some mineral vitamin or herb, they are called supplements because you are meant to eat well lol, not live on tablets of any kind, you aren't a bloody astronaut lol.
Eat ya greens people and ya yellows and reds and whatever other colour you can find, food generally won't hurt you, rarely would anyone ever OD on just eating lots of something that was very good for you, as long as you eat all kinds of foods.
I used to despise tomatoes, when I got older (20s) I decided to try them again, but I tried a hydroponic tomato, they were plump juicy tasty and it was the first time in my life I ate a tomato like an apple, the thought of doing that previously sent chills up my spine, now I love tomatoes I always have them, so if you think you don't like one of the very healthy veggies why not give it another go, you may be surprised, you may just like it today, maybe you can save some money or start a small veggie patch, then you could even get some heirloom veggies that actually have taste.
I find it easy to believe I don't need to take Echinacea lol.
Oh by the way I do drink way to much milk we can only try to adjust our diet slowly, baby steps is the way to go!
;o)
Multiple Sclerosis Portal | Australian MS Info
medical journals
Hey Helen I should be seeing my neuro in about a month. if I remember (memory not so sharp these days) I'll ask him then.
Usually Dr's get their information from medical journals. Pretty sure it's not from some dodgy website or book.
I agree Darrin, love my vegies & exercise.. also love a few beers or a good wine.
Do ask KEV
Do ask KEv, there is plenty of evidence saying that eccky is an immune stimulant - many just extrapolate from that evidence that it would effect MS. I would like to know of a clinical trial with eccky and MS, because like lots of herbal remedies there is no point in big drug companies funding them. Cynical beast that I am
Helen.
Darin is right!
As much as it pains me to say this, Darin's plea to eat good food, especially green veggies is right on the money, he will probably live longer than most of us, although he has lost several karma points for his mouse killings.
Helen.
Food for thought!
Hi Kevin & Helen,
Maybe the issue with Echinacea is the fact that it stimulates the immune system. Think about it, drugs people are given for MS are usually to suppress the immune system or modify it, not stimulate it. The whole issue with MS is that our immune system is out of whack, overactive and attacking itself, so it would make logical sense that taking something that stimuates it further may cause issues.
I can tell you from personal experience that in 1998 when Echinancea was first coming about in liquid form that I was taking it every day. A naturopath had advised me that I needed this to build my immune system. Now, at that stage I hadn't been diagnosed but my symptoms were more persistent. I was getting worse and western medicine couldn't work out what was wrong so I sought out help via alternative.
I took the Echinancea for quite some time but actually got worse. I gave it a break for maybe 6 months or so (can't quite remember exact times as long ago) but know I started it again in 99 (the years I'm sure of). Once again it had a negative effect me on. So I have never taken it since.
I did read somewhere recently about this very subject and MS. I'm not 100% sure but there may have been something in Jelenik's recent book?? So I'll paw through that and have a read. If I locate the information I will post it.
As for Darin's post, he is spot on as in one should eat a healthy well-balanced diet. We do get majority of things that we need from a good diet. But one thing I must partially disagree with is that we don't get all the things we need because of changes in farming practice over the decades. Lots of vegies lack the minerals they once had etc; So growing ones own or buying organic can help here, and if one grows their own they'll notice a HUGE difference in taste too!!