The LDN database

'Until there’s a cure, there’s LDN'

This is a quote from the LDN database.com website which I think is very fitting. I was recently directed to this online database by a helpful foggy friender called Luna. I am thinking of writing a letter to my MP lobbying for a clinical trial of LDN (though it'd be helpful if they developed a proper diagnosis for ME first). When I posted this on Foggy Friends Luna asked my why don't I join the group pushing for a clinical trial and to remember to fill in the form there stating how I felt LDN had helped me. 

The Graph for ME/CFS sufferers is very encouraging. Of the 22 people who have submitted info 16 found it helpful, 4 not sure and 2 nothing. You can view the graph here;

https://ldndatabase.dabbledb.com/page/other/vdDXrbBZ#

I've also joined the LDN yahoo group. Most of the other members have MS rather than ME but they sent me loads of Word documents stuffed with info on LDN. I'll include bits of the information on my blog as I read it 

If you are an ME sufferer on LDN follow this link to fill the form;  http://www.ldndatabase.com/questions.html

Foggy Friends have a chat room as well as forums. I've only just started to use the chat room, occasionally in the evenings, its nice to talk to some different people in 'real' time for a change. Foggy friends seems to be a very democratic ME website and there is a good mix of people  

A broken spear

Since Dr Wights disappearance from the scene we've struggled to find another source to supply us with LDN.

Dr Wight did give us the web address of some online docters who could supply us but they won't do so without your usual Dr signing a form basically stating you have a genuine medical condition and would benefit. Sadly my Mum went round to my GP with this form but she never got back to us saying she'd signed it. Fortunately they accepted a letter from my OT, which she'd written at the end of last Summer just when I was starting LDN stating I had ME and had been started on LDN by my Dr W. This was a relief.

Another place we tried was a consultant at Breakspear hospital, Dr Terry something (I can't remember his last name). Breakspear said they'd be happy to prescribe LDN for me but only if they were able to see me in the flesh first. They weren't happy to just have a telephone consultation, nor could they do a home visit as they're based in the north of England. It'd be difficult for me to travel there

We briefly discussed as a family asking their advice on what might benefit me and what specialists to go see. Apparently they cost an arm and a leg to pay to be a patiencent there though, someone on FF said they knew people who'd ended up selling their house to pay their expenses.

I hate England. All people do here is make a mountain out of what could be less than a molehill. As soon as I'm a proper adult and finished my degree ( and Barney and Jeremy/Herbert have safely passed away) I'm going to emigrate to Canada. They treat ME like any other illness there

One good piece of news to round things off. Dr Sarah Myhill has sucessfully appealed against her suspension and is now working again and taking on new clients. So if Dr Wight doesn't restart his clinic I could always go under her and she'd give me LDN!    

The Chrysalis

I've finally started to notice a real difference in my health which I think is due to the Low Dose Naltrexone (LDN). In case you've forgotten this is a drug Dr Wight prescribed in September. For a while I only noticed a few slight improvements in my well being, which could be have been due to any of my other treatments, not the Naltrexone at all. However since Christmas I've started to notice some real, huge changes which I think can only have been caused by the Naltrexone. I feel like a butterfly chrysalis that is just reforming and is about to break from its cocoon.

The biggest difference is in my walking and standing. To be blunt I haven't been able to stand for 11 years or walk either, apart from a short period in 2009, when I was able to walk around the house but not like this. I'm much more stable and it doesn't leave my legs ache like it did before.

I'm now able to do 20-25 mins of yoga every day rather than 10 mins as before. Usually I do the stretches in the 'Before you start' section of my 'Yoga for common ailments' book and then some proper yoga postures from my 'Yoga for you' book. I've now restarted my chair yoga classes, after the Christmas break as well. I particularly emphasise the 'Cows Head' posture and the spinal stretches to try and correct (or at least manage) my scoliosis (crooked spine). I only do the prone and sitting asanas though as I still find holding standing postures difficult. I'm sure yoga has done divends to help my physical well being as, now I'm well enough to walk, disconditioning isn't stopping me from progressing

I have more stamina than I used to but still don't have as much energy as my peers. I spend about 3 to 3 and a half hours lying down, resting, but that could be due to my Mitochondria damage I suppose.

I finally feel like I'm well enough to do some formal study, also for the first time in 11 years, so I am feeling quite a lot better than I was all the same. I left school when I was eight so obviously failed to sit any GCSEs or A-levels. However I've decided to do some level one science courses with the OU which don't require any previous qualifications. The first one I'm doing starts in Feb and is called Neighbourhood Nature so I'm busy swotting up on my graphs and data analyse.

I've been reading up a bit more on LDN. According to the MSRC (Multiple Sclerosis Resource Centre) it works by 'the temporary inhibition of endorphins (a natural pain-killer, produced in the brain). This results in a reactive increase in the production of endorphins, which would expectedly result in a reduction in painful symptoms and an increase in the sense of wellbeing. In addition, increased levels of endorphins would also be expected to stimulate the immune system'. However under situations of stress or secondary virus/infection you can still experience flare ups of old symptoms, even relapses so maybe thats why it took a while for it to work for me? Due to the cold and dear Freddie? This info is all intended, of course, for MS sufferers

A few 'before LDN' pics like they have on 'Home and Garden' makeover programmes;

        

The above was taken a few years ago but still applied pretty well last Summer. I spent a lot of time lying down on the same bed with the same kind of expression.

Me at a weekend camp last Summer with my wheelchair.

And after LDN;!

Current ME campaigns

Update on my progress with the infra-red and naltrexone; The infra-red and Naltrexone hasn't quite had the magical affect I hoped it'd have but obviously I haven't been under the best external conditions for miraculous recovery; first a cold, then the loss of a loved one. I have however made small progress with walking as I now walk around downstairs and in my room a bit whereas before I was completely wheelchair bound. This is mostly due to feeling less dizzy

Any improvement has also been hampered by my sudden complete loss of faith in my sleep pattern. Its alright most of the time just when I'm planning to do something special like, for example, last Saturday I planned to go on a badger workshop and I want to be at my best I suddenly become terribly afraid I'm going to sleep badly which of course stops me getting to sleep

After my cold I had to start building up my tolerence of the infra-red cocoon all over again. I'm now back to being able to use it for as long as before ( 6 mins) though happily. I'm on the full dose of Naltrexone too, 4.5 ml, compared to 1ml when I started. I was very worried when I first caught my cold that my sicky feelings were side affects of my treatments so at least its one small releif that it wasn't.

XMRV; XMRV is a newly discovered retrovirus, related to HIV, that is thought to cause cancer. It has been found in a high proportion of CFS/ME sufferers, according to a study in America. Subsequent research trials in Europe though haven't found XMRV in many of their research subjects, leading to debate, but this could be to do with the differences in diagnoses in the two countries; America has a much stricter (and possibly better) diagnosis criteria than Europe

America is also doing a much better job of dealing with XMRV.  It has commisioned top pathogen hunter Dr Ian Lipkin to carry out further XMRV research whilest the UK officials have merely stated "no public health action is required at this time". It is thought to be transmitted by blood so contaigan could spread through blood transplants.

I think leaving it untill a crisis comes up is a bad idea so have been joining in a campaign to lobby the UK government to take action

"I'm sending this E-mail to express my concern at the government
decision not to undertake research into XMRV as a current priority.
XMRV is a retrovirus, related to AIDS and lukemia. Research suggests
that it could be involved in causing both cancer and ME, common
illnesses in this country. I know these are tough finacial times but I
think the governments decision not to take XMRV seriously, RIGHT NOW,
could have terrible repercussions in the long term"

This is the message I repeatedly sent Andrew Lansley, Secretary of State for Health, Sally Davies, Chief Medical Officer at the Department of Health and John Savill, Chief Executive of the MRC most days for about a fortnight. Though I don't think XMRV is the whole answer to the underlying cause of ME I think all avenues should be explored

Worldwide petition to get access to secret ME/CFS files; This is another campaign I've championed recently. It was started by Dr John Greensmith @ ME free for all whom I'v had reason to talk to in the past. The secret files are held by the Medical Research council and will currently not be available to the public till 2072

For more infomation and if you wish to sign it click here  http://www.thepetitionsite.com/264/--if-gte-mso-9xml-wworddocument-wviewnormalwview-wzoom0wzoom-wpunctuationkerning/

I beleive that with so little infomation currently around on ME, anything that is there should be open for people to read and learn from

  http://www.mefreeforall.org/index.php?id=1

Dr Wight

It would take a very long time to explain every detail of the journey
which led me to becomeing one of Dr Wights patients so I shall
probably explain more as we go along. I'll just say for now that we
first heard of him when he was reccomended to us by a man who goes to
Dads Yoga Nidra class. We pressuried my Dad into going, in spite of
his aversion to anything vaugely 'hippyish', to try and releive his
stress. As it turns out its just as well we did or we'd never have
heard about Dr Wight. The man who reccomended him actually suffers
from lyme disease, not ME, but he'd been misdiagnosed with ME to start
with which is how he ended up at Dr Wights clinic.
He first tested me for Mitochondria disorders because, though ME is
generally regarded by enlightend clinicians as a neroulogical
disorder, many ME sufferers have Mitochondria problems and all forms
of treatment will prove pointless if your Mitochondria isn't working
properly.
I'v suffered from many, varied neroulogical symptoms over the years
ranging from cocentration and memory problems, hypersensitivity and
IBS to name but a few. However as I haven't got anything wrong with my
actual Mitichondria cells (apart from this glycolic acid which ison my
translocating proteins, not affecting the cell itself) the other
likely cause of my neroulogical symptoms is a persistent virus.
Probably an Enterovirus (virus of the gut). I haven't actually been
tested for any Enteroviruses as it would involve a stomach biopsy and
Dr Wight didn't want to do one of those on me. It was a virus which
gave me a very high temperature and made me so sick I couldn't keep
even water down (symptoms suggestive of a virus of the gut) that
seemed to cause my ME, 10 years ago, though.
To help fight a potential persistent virus Dr Wight has given me low
dose Naltrexone to take. I'v been taking a 1ml dose for a week now. I
haven't experienced the miracle cure I half dreamed of yet, actually
all I'v really had are a few side affects (headache, sore throat), but
nothing too bad. Overall, along with my new diet, sleep meds and
infra-red, I'm feeling brighter and optimistic