Does LDN react with injections, tysabri or GilenyA? Thanks in advance
hi
i have taken ldn for 9 years and tysabri 8 months-no probs and neuro aware.
ellie
Do u think it helps? My doc made me promise not to take it.
yes. i wont be without it. in fact if i HAD to choose…
but thats just my opinion.
Just curious what do u find it helps with? Do u get private prescription?
bladder-i have never had uti despite it being common with ms.
my outlook-tho i have always been a overflowing cup kinda girl.
i ran out once-several years ago-instant double incontinence. (i have that now anyway following huge relapse 18months ago from which i have never recovered fully)
9 years down the line having lived with ms and meeting loads here and abroad i think theres very little that will stop ms running its course. we can help make our bodies, as strong as poss to deal with relapses tho -thats pysical mental and emotionally.
dmds may be included in that-i am not sure-i was never offered them or requested them.
e
I am guessing that your GP doesn’t actually have MS? The medical advisors to the ldn research trust claim there is no contradiction with DMD’s and MSers have successfully combined both drugs for years. Sadly, it does not help everyone (what does?), but taking ldn has definitely provided me with lasting benefits. Incidentally, my GP writes a prescription on the NHS and has done for ten years.
Take a look at the anecdotal information at www.ldnresearchtrust.org and see what you make of it.
LDN does nothing for MS in the sense it slows MS progression or cuts down relapses, People claim it helps with some spasticity
and may have a slight euphoric wellbeing but thats it.
All these LDN people who take it all get worse yet they keep promoting LDN.
If LDN was so damn great then NHS would prescribe it as its so cheap.
They all so vague also ‘may help MS symptoms’ ‘Provides lasting benefits’ C’mon what benefits and if you go to LDN website it kills cancer? LOL
Oh here is a quote 'Autoimmune diseases. Within the group of patients who presented with an autoimmune disease (see above list), none have failed to respond to LDN; all have experienced a halt in progression of their illness. In many patients there was a marked remission in signs and symptoms of the disease. The greatest number of patients within the autoimmune group are people with multiple sclerosis, of whom there were some 400 in Dr. Bihari’s practice. Less than 1% of these patients has ever experienced a fresh attack of MS while they maintained their regular LDN nightly therapy.
So out of 400 1% of them did not have a relapse? over what time? I’ve not had a relapse in over a year, I drink green tea does not mean I would tell people drink green tea and your have lasting benefits.
http://www.lowdosenaltrexone.org/index.htm#What_diseases_has_it_been_useful_for
Oh it cures AIDS as well LMFAO
‘Over the prior 7 years over 85% of these patients showed no detectable levels of the HIV virus — a much higher success rate than most current AIDS treatments’
You know what waste your money of this Placebo effect, Whole website is a total farse!
Drink green tea its cheaper and actually does THINGS
Sorry to hear ldn did nothing for you, although I thank you for adding your expert opinion.
I have a friend with fibromyalgia she’s in her 70s it’s great improved her walking and her pain level. And she says nothing else has helped.
Well green tea is cheaper and does actually do things, it made me more regular. Whereas LDN made my spasticity a lot better and my walking easier and this was not a perceived improvement or an imagined improvement. I was diagnosed 30 years ago and am pretty sure I know the difference. Gary
LDN has, without a doubt, greatly reduced the spasticity I typically suffer at bedtime. Really. And now it cures AIDS too? And not only AIDS but AIDS coupled with LMFAO…which I can only imagine is the hair-challenged party band from Los Angeles. Getting them must be like getting crabs. Good to know you are willing to experiment with treatments…and frenetic beats.
Since we’re all in this together and all…this horrid slow, rudderless boat of a disease that is…without a permanent port to tether in…
I have been injecting Rebif since 2000 and taking LDN and Rebif since 2008.
I don’t believe it stops relapses - I had my worst one in 09 when I had run out of Rebif. I felt great, but the relapse knocked me sideways for months afterwards and I managed to get back onto Rebif again almost immediately after the relapse.
Pluses for me - bladder. Oh, the bliss of sleeping through the night and no more Tena pads.
My spasticity was better as well.
So yes, you can take both together as apparently LDN boosts the blood/brain barrier and so does beta-interferon.
K
I have a problem …and it’s a biggie. The LDN facebook page is dominated by someone who is very authoritative and who writes that you can’t take DMDs and LDN together, despite the fact that he hasn’t ever been on a DMD and he isn’t a doctor. The other ‘expert’ hasn’t got RRMS and shouldn’t (in my opinion) be handing out incorrect advice.
I find this either/or attitude rather distressing and have tried to leave the closed facebook group, but can’t. Whammel - can you help?
The chap you mention is of course bonkers and probably deserves our sympathy, what with him being personally affected by alien abduction and all. However, there are significant differences across the pond concerning timing, and use with DMD’s, that are simply not held in Europe. To be fair, Linda does challenge these outdated views, but the membership seems to be mostly American and it’s tricky.
I rarely use the page these days for much the same reason (well that and a inability to understand facebook), but made an exception in your case and consider yourself removed.
I hope everything is as it should be in your rural idyll.
Just another thing to throw in the LDN pot, I bought it years ago for my son ( private script ) for his Crohns and Colitis but sadly it made no difference to him at all…however we know others who swear by it.
Ell
One thing that you can say for certain is that there is no evidence that either LDN or Green Tea is better than the other.
And, of course, I mean evidence in the accepted scientific sense of the word.
There is a lot - like a real lot - of anecdotal evidence that LDN works for rather a lot of people; and some people who have tried it say that it is not for them. One thing I can be sure of is that every green tea drinker is going to die. That, of course, is the same as the mortality rate amongst non-smokers, red wine drinkers, and gum chewers. In other words, the anecdotal evidence of one green tea drinker is worth no more, and no less than, the people reported by Dr Bihari.
No properly controlled study equals no scientifically valid data. If you want to go for anecdotal evidence, then it all depends on who you choose to believe, and what you expect from LDN or green tea.
The green tea theory came up here a couple of years back:
http://www.mssociety.org.uk/forum/everyday-living/green-tea
and what was said then is still worth reading.
Just remember that a link in that thread extolling the virtues of green tea just happens to come from a company selling (yes, you guessed it) green tea.
Geoff
So a lot is perception. If people think it helps then surely it’s a good thing. I’m sure we’re all aware there’s no miracle cute for me when I go to bed. The stiffness in the morning is a nightmare. Getting up in the morning it’s like waking up on stilts. I had exceptional balance but between weakness and stiffness putting on pair of jeans is a nightmare. As is having to bend my knees. I think something that eases is more what I’m looking for. And it interesting people think it helps spacisity. For the sake of 20.00 I can’t see the harm in trying it. Em
The issue, Em, is not whether £20 is worth spending to find out.
One Anon asked a specific question about LDN and possible interactions with certain drugs.
Another Anon then “ran down” LDN saying that it did not work and Green Tea did.
There are quite a few people here who find LDN works for them (no, not me, but could be when I move from RRMS to SPMS) andit was not polite to tell them that they were wrong.
There is no scientific evidence for either product - it’s a simple case of “if it works for you, then it works”. And, if it works for you, then it is not very nice to be told that it does not work.
If you want to try either, go ahead and try one or both - then see if your opinion is the same as that of Gary, above.
What you could say is that Anon No 2 hijacked a serious thread to push his own “pet” treatment.
Geoff
Noooo I was not promoting green tea, I was joking as a unproven remedy and just used it as an example had no idea about other link (topic)
LDN does nothing for MS in the sense of messing with immune system with T cells or killer cells and reduction in relaspes/progression, I did say it may help with muscles and therefore relieve pain.
Though my neuro did say it LDN inhibits Rebif and LDN is no good for RRMS.
When people want to push LDN it would be nice to say what type of MS they have and how does LDN actually help them
instead of being so vague and posting a site that also vague saying LDN helps with nearly all diseases and says ‘Data from 2003 says it helps with diabetes, MS, Cancer, Aids, Wind’
Kind regards
Anon 2.0