Question on recovery

have been doing Dr Myhills protocol of supplements, sprays and detoxing for a couple of months now. I think it might be making a small difference but I feel stuck. After years of peuseudo recoveries + relapses, I'm scared to try and improve. I also don't feel I know how to though I have lots of plans for when I'm better.
My symptoms are currently; wind, hypersensitive to light + sound, little appetite, tiredness after exertion, headaches occasionly, insommnia occasionly, muscle weakness

A typical day;

  • 7:20 Look at book/mag, cuddle Herbert, check E-mails, drink
  • Rest for 30-40 min
  • Breakfast while listening to music/story
  • Rest for 30-40 min
  • Get up with help
  • Yoga rest for 40-50 min
  • Crochet, Watch fish/birds, Cuddle Herbert
  • Lunch while listen
  • Rest for 3 hours
  • Drink, exercises, Computer/tv, Cuddle Herbert, listen
  • Tea
  • Listen untill bedtime at 8:15


I have a physio that cones on Weds

So what I want to know is; How long did it take you for the protocol to take affect? How did you manage to get better?

I appriciate its difficult to advise me as I haven't told you my particular problems yet but I'll try to scan + copy the letter ASAP

Comments

Because of your concern with trying new treatments, my first tought is that kinesiology testing might offer some help. I am referring to a method of muscle testing to identify sensitivities, intolerances, dosages and frequencies of using supplements and treatments. For me it cuts out a lot of trial and error. Some Touch-for-Health practicioners can do this.
 
Hi Rosa,
I don't know what you're eating, but I was diagnosed with fructose intolerance (found in approx. 80% of people with ME here in Melbourne) and following that I kept to a very strict diet for 3 months (and only slightly less strict after that). The only foods I ate were: chicken, lamb, pork, beef, eggs, specific non-fructose vegetables (look this up for details - but no onions, no garlic, no leeks, no green onions etc., no nightshades), olive oil, salt, quinoa, pumpkin seeds, sunflower seeds, sesame seeds, chia seeds, decaff tea and rice milk. Best to get tested yourself for food intolerances, i.e. if you don't tolerate eggs, this diet won't help!
After 3 months on this diet I went from being almost entirely housebound, in bed for half the day, to going out most days and leading an almost normal life. Still some ways to go, but am around 80-90% of normal now.
 
After years of peuseudo recoveries + relapses, I'm scared to try and improve.
I cant answer your question but wanted to comment on the above part of your post.

I too have a great fear of improving. This is cause I once went throu a remission for several years and just when I believed I'd never have this again and was safe, I then thou crashed back down into this illness. So I fear I may get well only to go throu it all over again (in some ways it was even worst emotionally then the first time as I knew exactly how bad I could get).

I find it really hard to get over what happened and hope that those thoughts dont really go and affect me from getting well.

anyway.. all the best to you
 
Hi rosa
I have been working with Dr Myhill since last May. I am not cured, I certainly still have ME, but I have noticed definite improvement in terms of my stamina and overall energy. I do other stuff as well - like you, yoga, also perrin, and the donna eden emergy medicine stuff. I guess all we can do is dare to hope and travel in that hope xxxx
 
Hi folks,
I've often wondered about whether I should be looking to Dr Myhills tests for some pointers as to where I am with this illness.
I would appreciate any comments/thoughts on this and whether they are worthwhile, bearing in mind they are expensive.
Every blood test I've had so far came back "normal" ... I've never actually got to see how "normal" they are and I know that there can be a big difference between absolute normal and borderline normal .... I'm sure this is a familiar story for so many of you and the anger & frustration that comes with it.

Knowing very little about it.... the main tests I suppose are the mitochrondia and adrenal tests ?

Would appreciate your feedback. I read letter with Rosa results and can see just how comprehensive but at the same time bewildering the process can be. Looks like one of the main priorities which is something that crops up continually in the cfs/me recovery guidelines is to address sleeping problems. Something that I have only been partially successful with myself.
I've not taken prescription medicine for this only tried... HTP and magnesium tablets, regular sleep times but still have trouble.

Love & best wishes to anyone reading this
 
Hi Richard, i am a patient of Dr Myhills and i found the Mitochondrial test results very useful, especially as they come with a supplement and mangement plan just for you based on your results. If you cant afford the tests i know some who have been helped by following her egime of pacing, diet and supplements without the tests and are doing well. She has a free downloadable e book here http://drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill

I have improved from about 25% to 40% functioning in the past year following her advice, BUT pacing correctly and sleeping are very important parts of this. I can still slip back to 30% for a week or more if i overdo it - i do now though actually have days where i feel almost not sick - not full of energy - but not actually feeling ill or fluish or in pain. Today unfortunately is not one of those days as i overdid it after 2 weeks of feeling good(ish)
I still cant exercise at all and even yoga is too much for me and causes relapses, but i figure if this carries on i will be significantly better this time next year.
BTW i am one of those who has had M.E for many many years but i had a long near 'remission' in the middle of two severe episodes where i was functioning very well and leading a near normal life.
All the best, Justy.x
 

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