International LDN Awareness Week eBook - User Control Panel

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I originally paid for the LDN myself, but later went to my own GP and asked if shewould prescribe LDN. She said, "Wow you look fantastic”, and prescribed it for me. Twomale GP's at the same local practice had previously turned me down.I've now been on LDN since March 2007, 16 months. Despite a short exacerbation,which wasn't as severe as previous relapses, I'm still active and full of life. My only sideeffect is constipation, which I've had since starting LDN. Nothing I've tried seems tohelp. Over a long time this may result in other problems, but who knows. Also, I noticedif I take my LDN at bedtime, I can have nightmares, so I experimented with taking it abit earlier, and it worked - no more nightmares.I now have a border collie who is extremely active and keeps me busy. More thananything LDN has given me hope.Update – January 2009: I've had diplopia for as long as I can remember. When I look tothe far left, right, up or down. If I do exercise it gets a bit worse. I saw my opticianrecently and he thinks I had it as a child, just didn't notice. I haven't had a relapse andit's been like this the whole time I've been on LDN.I am trying to be careful with diet and lifestyle but Christmas is a difficult time of year.I've just had a birthday celebration and I was as good as gold. I ate pigeon andvenison. I had an Elissa test and it revealed I had a problem with most proteins. Theonly proteins I eat at home are hemp seeds and quinoa.The constipation problem disappeared soon after starting on the Best Bet Diet (BBD),and I got rid of my nightmare problem by taking my LDN a bit earlier at 10.00pminstead of 11.30pm.I have just joined a gym for three months so I hope to make the most of it. I don't thinkmy border collie is going to be too pleased!!It’s now July 2009… to update my case I never did go to the gym and I didn't continuewith the BBD. My Elissa test told me to exclude everything I was eating but to give upso many foods would be impossible. I now eat everything, gluten, dairy and the oddglass of wine.My health has been good and I didn't have a cold all winter until May. I don't feel like Ihave MS. I am even attempting to have a baby, something I never thought I'd hearmyself say. I’m closer to the end than the beginning of my childbearing years, so it's abit late, but I am putting my trust in the LDN.Produced by LDN Research Trust for International LDN Awareness Week 19-25 October 2009© LDN Research Trust 200918
8Bev K, USA2004 - Multiple Sclerosis2005 - LDNMy husband was diagnosed with MS in 2004. He had not long turned 40. He wasdiagnosed fairly soon after his first definitive symptom, which was Nystagmus. MS wasconfirmed after a brain MRI and a lumbar puncture.Of course we were shocked, and right away the Neuro advised him to begin Avonex.We were given all the info - a huge folder of paperwork. When we took it home I spenta couple of days going through it all and finding out how much it would all cost. Livingin the US with no health insurance is a scary thing. I’m British and was used to theNHS, not without its problems, but compared to living with no health providers at all, itseemed wonderful by comparison.When we found out the Avonex would cost us over $1,000 a month, we were horrified.How could anything cost so much! THEN, I started to hunt online for an alternative. Ifound out that Avonex and indeed all the injectable MS drugs, were not only expensivebut fairly ineffectual. My husband always laughs at me for being online so much andusing the computer to research so many different things. When I came across LDN andwe started talking about it, he changed his tune!I wish now that I’d started to make notes of the whole process, as my memory is not sogreat on how we progressed after that. I know I found the Yahoo LDN group and askeda lot of questions and found info to print up and take to the Neuro.We told the Neuro that before my husband would try the Avonex, he wanted to tryLDN. It was a treatment we could afford, and it was obviously less invasive that aninjection each week. We left the info with him and returned a few weeks later. He saidhe’d rather my husband start on the Avonex, but agreed to him trying the LDN for awhile.We had to tell him how to fill out the script (we still do actually!) and we sent the scriptoff to Skips Pharmacy in Florida.He started off with the first batch of LDN at 1.5mg, and within a month was at hispresent dose of 4.5mg. I think he’s missed one pill once in the whole four and a halfyears.We still battle occasionally with the Neuro. Now he says my husband probably has‘benign’ MS and that’s why he’s still so well. It’s not true, but whatever works for him!Have to be gentle with the Neuros!My husband has had a brain MRI each year since diagnosis. No new lesions haveappeared since he started on LDN. Many of the lesions he had have either gone or areinactive. He’s had no new symptoms and no relapses. He still has some cognitiveProduced by LDN Research Trust for International LDN Awareness Week 19-25 October 2009© LDN Research Trust 200919
Page 1 and 2: 100REASONSWHYYOU SHOULDKNOW ABOUTLD
Page 3 and 4: STORYNUMBERCONTENT CONDITION PAGELi
Page 5 and 6: 95 Vicki F, USA Multiple Sclerosis
Page 7 and 8: 1Adrian, UKApril 2005 - Secondary P
Page 9 and 10: Over the years I was given no medic
Page 11 and 12: I was very run down and tired, and
Page 13 and 14: I've just taken Syd on a walk by my
Page 15 and 16: 6Atif A, ScotlandNovember 2005 - Mu
Page 17: If I went for a walk it was like th
Page 21 and 22: The back pain was the first indicat
Page 23 and 24: I later noticed, when completing an
Page 25 and 26: For three days we lived on sandwich
Page 27 and 28: This had been opened and equipped w
Page 29 and 30: presented to me and offering advice
Page 31 and 32: On first reading mention of this ap
Page 33 and 34: Videos of all the talks and other l
Page 35 and 36: time it rained. I can stand in line
Page 37 and 38: I fall asleep as soon as my head hi
Page 39 and 40: are her main symptoms. She is affec
Page 41 and 42: After a few weeks of taking LDN, I
Page 43 and 44: (1) I still suffer from tiredness a
Page 45 and 46: I was started on beta-interferon be
Page 47 and 48: 20Crystal N, USANov 2004 - Secondar
Page 49 and 50: After I was diagnosed with Secondar
Page 51 and 52: 22David N, UK1995 - Multiple Sclero
Page 53 and 54: I went looking for alternative trea
Page 55 and 56: 26Dianne W, AustraliaOct 1986 - Rel
Page 57 and 58: then I pay for a month’s supply o
Page 59 and 60: The doctor had no information for m
Page 61 and 62: us make significant decisions for o
Page 63 and 64: The improvement was so very gradual
Page 65 and 66: 33Francie S, USASept 2000 - Multipl
Page 67 and 68: At around this time, my husband was
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There was no real explanation from
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38Jay D, UK2001 - Multiple Sclerosi
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stories of how they had patients th
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41Jeni S, UK1997 - Diagnosed plaque
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to speak honestly of our experience
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45John O, UK24 July 2000 - Secondar
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More recently, I've been having Hyp
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49Joyce C, USA2001 - Hepatitis BJul
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to treat children with Autism. We r
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This is one of the end goals of the
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50Judy H, USAOctober 1995 - Fibromy
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The first night I did fine. No drea
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50mg tablet to fine powder between
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ut she also did not say too much ex
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I agreed to start on Copaxone injec
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een prescribed some cream made from
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56Linda Elsegood, UKOct 2000 - Rela
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Six weeks later I was given another
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Mum survived, even though a third o
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I was having a relapse every 6 mont
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At this point I couldn't feel any o
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agreed to refer me, but said I prob
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This position also gives me full ac
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The internet is a great tool and if
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Importantly, she can now hold a mug
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Until four or five years ago it was
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65Michelle X, UKApril 2004 - Multip
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I have not had the strange dreams o
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I actually took a paperclip (workin
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Life was good, but I knew it could
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68Nikolaos P, UKMarch 2007 - Multip
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I restarted taking LDN about a year
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intent of tapering down to 3mg dail
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In January 2008, our son started on
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75Paul C, UK2004 - Multiple Scleros
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78PN - ANON, UK2006 - Primary Progr
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I have now been on LDN for almost a
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I’d done a lot of research becaus
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had her on worked against her. She
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promoted as healthy). Seems that my
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I have been taking LDN for almost o
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MS is part of my life but I have a
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87Steve W, UK20th Sept 2001 - Relap
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Having spent 25 years soldiering an
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left eye was permanently damaged. T
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Since restarting LDN, bladder probl
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My husband retired August 2002 and
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from wishful thinking, but hoped so
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used my foot for the car brake as w
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94Vickie A, USADecember 2006 - Mult
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95Vicki F, USA1998 - Progressive Re
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after 9 years, no longer on any ant
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96Wanda L, CanadaJune 2006 - Fibrom
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(RRMS), and was provided with a whe
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from home. We eventually parted, wi
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consumed by the disease. I shrank t
Page 181 and 182:
ACKNOWLEDGEMENTSThe need to raise a
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