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Lord Chief Justice's daughter-in-law with severe ME improving on three treatments

Countrygirl

Senior Member
Messages
5,425
Location
UK
http://www.dailymail.co.uk/health/article-48150/Fresh-hope-ME-sufferers.html


Fresh hope for ME sufferers
by BECKY MORRIS, Daily Mail

Last year, Good Health told the moving story of devoted couple Harry and Nuala Bingham.

He was the Lord Chief Justice's 34-year-old son who gave up a brilliant career in the City to nurse his wife, who was struck down with a post-viral condition so mysterious that it did not even have a name.

Doctors had told Nuala, also 34, that her condition was chronic and there was nothing more they could do. She faced a life of almost complete immobility and permanent exhaustion.

Now, a year on, we revisit the couple to find that, remarkably, cutting-edge treatments tracked down on the internet are slowly restoring Nuala to health.



A year ago, Nuala Bingham was so weak and ill she had to be carried down the stairs by her husband.

She had only two hours of energy each day, and spent the rest of the time lying, exhausted and fragile, in a dark room. She was nursed constantly by her devoted husband Harry.

Nuala had been diagnosed with a rare and complex post-viral condition similar to ME (myalgic encephalomyelitis).

She had just 3 per cent of her former energy, could produce no viable hormones and was prey to all manner of secondary infections.

Five years ago, just a year after she married Harry, she had suffered encephalitis, a brain infection which left her with so little mental energy that, at times, she could not even talk.

Today, though pale and slender, she walks unaided into the drawing room of her quiet Oxford home.

'I have really started to perk up - it's been wonderful,' she says. 'After five years of illness, it is amazing to be able to get things done. I can even help Harry. It has transformed our lives.'

Her improvements are a result of three radical and, in this country at least, unheard-of treatments.



Read more: http://www.dailymail.co.uk/health/article-48150/Fresh-hope-ME-sufferers.html#ixzz3LgjsXejw
Follow us: @MailOnline on Twitter | DailyMail on Facebook
 

Countrygirl

Senior Member
Messages
5,425
Location
UK
The effects of classic encephalitis are generally unappreciated. It can devastate people, has a high death rate, and can lead to serious brain damage. It might also be why I have ME.

Yes, my downward spiral began with what was diagnosed in hindsight as encephalitis when I was a student. I was never the same again and deteriorated with each fresh infection and then chronic exposure to a group of organochlorines triggered severe ME.

I have also found that any brain impact (I have had three-stroke like episodes caused by severe and rapid hikes in BP) triggers a severe exacerbation that mostly confines me to the couch or bed for many months.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I have also found that any brain impact (I have had three-stroke like episodes caused by severe and rapid hikes in BP) triggers a severe exacerbation that mostly confines me to the couch or bed for many months.

High bp is one of my issues, which confuses some docs as I also have severe neurally mediated hypotension, and my high bp partially protects me from that. So far I have not had any strokes, but its always a risk. Strokes can severely impact anyone, not just those with ME. They are highly disabling in their own right.

One of the treatments used by the lady in the article was heparin. This helps many patients, but I suspect I could not tolerate it. She found a good combination for her, but I wouldn't presume this will work for everyone, though I would not like to discourage people from trying under appropriate medical supervision.

The other two treatments were growth hormone and antibiotics. We well know that antibiotics work well on a subset, though growth hormone is often not discussed and I am not aware how many are on it, though I do hear about it from time to time.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Interesting. I'm not sure what i think about those particular 'treatments'. I've not come across them before as potential therapies for ME. Perhaps growth hormone might potentially help restore some strength and balance to some patients in the chronic stage of ME. I've not heard of any ME patients having any therapeutic success with antibiotics; When we discuss antibiotics, it's usually when people are saying that antibiotics were a trigger for their ME. And I've never come across heparin being used in that way. It all sounds very experimental. Interesting article.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
And I've never come across heparin being used in that way.

I didn't read the whole article (apologies) but can comment on heparin as I've used it. For those of us who had a positive ISAC test for the type of hypercoagulation that has been found in many ME patients, low dose heparin injections over a period of months seems to help about 50% (or so my doc reported). They did help me quite a lot.

Sushi
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Interesting. I'm not sure what i think about those particular 'treatments'. I've not come across them before as potential therapies for ME. Perhaps growth hormone might potentially help restore some strength and balance to some patients in the chronic stage of ME. I've not heard of any ME patients having any therapeutic success with antibiotics; When we discuss antibiotics, it's usually when people are saying that antibiotics were a trigger for their ME. And I've never come across heparin being used in that way. It all sounds very experimental. Interesting article.

Growth hormone as a ME/CFS treatment fad many years ago. It did certainly help some. Many of us are apparently deficient in growth hormone due to this illness. I dont know why no one seems to trial this anymore (maybe due to it being a costly medication?? or just hard to get onto??).

Its one of the things I wish I could get tested and possibly trial.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There was a clinical trial of heparin some years back in the US. For a time it was one of our great hopes ... you know, a bunch of people got better, then a bunch more got invested in the idea this might be a cure. It didn't pan out, but it does help a subset of patients.

Its often the same with antibiotics and antivirals.

Growth hormone has not, to my poor memory, had a proper trial, but I could be wrong about that. It has however been tried every now and again.
 

Gingergrrl

Senior Member
Messages
16,171
When my Endo did initial blood tests on me in 2013, I had low growth hormone results twice. He said however, the definitive diagnosis required a brain scan and some kind of stim test (forget the name) where you are at a lab all day and they do like 9-10 blood draws :eek:.

I declined the whole thing but he said without those tests showing low growth hormone, insurance denies the HGH shots and they are several thousand dollars per month. He also did not think they would work for ME/CFS (but he was willing to prescribe them if I did all the testing and insurance approved.)

I never pursued it b/c at the time he also diagnosed me with Hashimoto's and I started on thyroid hormone instead. Has anyone done all these tests and taken the HGH shots and were they helpful? I remember one other thread about this many months ago but forget the details.
 

Mij

Messages
2,353
I didn't read the whole article (apologies) but can comment on heparin as I've used it. For those of us who had a positive ISAC test for the type of hypercoagulation that has been found in many ME patients, low dose heparin injections over a period of months seems to help about 50% (or so my doc reported). They did help me quite a lot.

Sushi

I thought the theory was based on an infection being the cause of hypercoagulation? Or is taking heparin only for those with hereditary factors? Did you take both anti-virals or abxs with heparin? I had 2 positives on the ISAC panel pointing to an "inactive infection" and taking heparin was supposed unleash, if you will, the infection.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I thought the theory was based on an infection being the cause of hypercoagulation? Or is taking heparin only for those with hereditary factors? Did you take both anti-virals or abxs with heparin?
Yes, that is how I understood it too--viral and/or bacterial infections. I didn't take antivirals at that time because Dr. David Berg hadn't yet developed that part of the protocol.

Sushi
 

Mij

Messages
2,353
Yes, that is how I understood it too--viral and/or bacterial infections. I didn't take antivirals at that time because Dr. David Berg hadn't yet developed that part of the protocol.

Sushi

But you felt improvement from just taking heparin?
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
High bp is one of my issues, which confuses some docs as I also have severe neurally mediated hypotension, and my high bp partially protects me from that.

Have you had doctors insist on treating hypertension? I had one doctor (for two appointments only) threaten to withhold Imitrex (the only med that helps my migraine - not even opiates help) if I "didn't get [my] BP under control".

This "doctor" also claimed ME/CFS doesn't exist and that I just needed therapy and exercise to treat my non-existing illness. Makes sense to me. Sort of.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
That Daily Mail article is from around 2002. They dumped a lot of old articles on the internet and they come up with todays date. You can usually tell it is an old one as there are no comments underneath and it says that the comments are closed. Keeps happening with Daily Mail articles.

The reason I think it is from 2002 is that there was a reference to the CMO report on CFS in the previous article.

No idea how Nuala B is today. There are other mentions of her on the internet after that.