My Story and journey...

Hi All

Ive been using this forum for quite a while now, but have yet to say anything,so thought it was time considering how much you guys share on here, has helped me along the way.

History (this is what I wrote to Dr Lam before going with his nuitrition programme). Ill put the next six months of treatment in the next message.

February 2009

After a six month period, two years ago of physical over training (martial artist - tournament training using BSN No Explode for 3 months and not taking care of my diet - have always had little energy so ended up using this `enhancer`) I came down with a virus which never really went away. Chronic fatigue, sore muscles, swollen glands, brain fogs, very much similar to the symptoms of ME. I struggled through, pretty going from one good day to three bad, slowly seeing the good days get more and the bad days less. At the time, because of the tiredness I believed the recovery was down to sleep, and I tried to do this as much as possible, and I was using codeine as it seemed to work the best and I was suffering from Depression from pretty much losing most of my life and being house bound for so long. I was working freelance at the time, so only worked enough to pay my bills) It meant I could sleep and feel better for longer periods of time...eventually over almost 18 months later, and after almost four months of no severe symptoms I thought I had recovered and found myself a new job in . That’s when things got immediately worse.

August 2010 – May 2011

I stopped taking codeine to sleep as I wanted to start a new life drug free, yet from the very first day I started, I found I couldn’t deal with stress and everything was literally `stressing` me out. I couldn’t sleep. I would go to bed around 11pm tired, and able to fall asleep and wake up at 2.30/3.00 every day, and was unable to go back to sleep with `thoughts racing around my head`. I thought it was just initial new job new world reactions, but it never went away, the stress just got worse and worse and Depression started to really set in. I was pushing through, working long hours, practically not sleeping. I was constantly sick, so tired I began to hallucinate, I suffered painful restless leg syndrome and terrible pain the left hand side on my chest. My GP said the chest pains were nothing to worry about (I did attend Accident and Emergency twice because of it, but x-rays showed nothing). My GP put on a course of Mirtazapine, which made my Depression worse and I began to have suicidal thoughts. Christmas I came down with a terrible flu that took hold of me for over a month. I came back to life after stopping the Mirtazapine and felt good for around two weeks, then it all started again, the stress, the insomnia, the chest infections, and the anxiety. Everything. Again I battled through at work, but at this point I was sleeping 7 hours in a week sometimes, and it was taking its toll of me mentally and physically, I looked like a drug addict with my bloodshot eyes, lethargy, inability to balance or concentrate. I felt continually sick, in a painful dream world, unable to ever relax and living a 23 hour a day reality. Mentally it was starting to break me. The restless leg syndrome was getting worse especially after exercise and after a visit to an M.E Specialist (my GP had organised) he found I had low iron, and put on ferrous sulphate. This made things worse especially the RLS.

June 2011

I switched GP’s around now as other than Zopiclone (Imovane) he said there was nothing more he could do for me, but arranged for me to see a CBT counsellor. The new GP put me on Amitriptyline in an attempt to aid the anxiety, lift the depression and to help me sleep due to its sedative qualities. I worked up to 150mg and although it would help send me to sleep, I still woke up anxious, wired, ‘ready to run a marathon’ and with racing thoughts at 3.00am unable to get back to sleep and by morning I felt worse than before the I had started using pills. I had begun to function on adrenaline, sugar, food, coffee, anything that could keep me going and keep me holding on to my job.

Through my own research and reading Doctor Wilsons book, I discovered the concept of adrenal fatigue. I found a local nutritionist who got me an ASI test in August 2011 through Genova Diagnostics and the results came back as Adrenal Fatigue - None adapted response.

Cortisol Levels (range 21-41 nmol/l)

Sample 1 Post Awakening 9.00am – 4.2 - Low
Sample 2 +4 – 5 hours – 3.4 - Low
Sample 3 +4 – hours – 2.0 - Low
Sample 4 (Prior to sleep) - 1.2 – Inside Range
Total Daily Cortisol – 10.8 Low

DHEA Levels (nmol/l)

Sample 2 (AM) – 1.05 – inside range
Sample 3 (AM) – 0.62 – Inside Range

DHEA Cortisol Ratio – 7.73 – High (nmol/l)

(Result PDF available to email)

He gave me a list of supplements to take which I did religiously. I also gave these results to my GP and he sent me to an Endocrinologist at Bart’s Hospital, London.

Supplement List

AM

Thorn Glandular x2
Jarrow B Complex x1
Vitamin C Ester C 500mg x1
Jarrow Adrenal Optimizer x1
Jarrow Tyrosine x1

Lunch

Deva Vegan Multi Vitamin x1
Thorn Glandular x1
Co-Enzyme Q10 x1
Vitamin C 500mg x1

Evening

Magnesium – 1000mg
Flaxseed Oil – 1000mg
Vit C – 500mg
Jarrow Theanine – 200mg

Bed

Amitriptyline
Valerian Root Extract – 500mg

At first I found a massive change, especially in body temperature (I had suffered from being cold for years now, even if the heating was on in the house in the summer, I still needed warm jumpers and my body temperature would never regulate properly). I was warm and clammy for almost two weeks and it was slightly easier to get through the day. I spent three months using the glandulars, till they became ineffective, and I didn’t want to take more and more to get the same ‘feeling’. The nutritionist (not a great one but the only one I could afford and find) gave me Isocort which I was meant to use when trying to excercise (I’ve gone from super fit daily runner to pretty much zero exercise now and I wanted to get some of it back (Karate, mountain biking, sky diving, running, climbing was basically my life). The chest pains had also subsided for the first time in over a year.

At this time I had blood tests done at the endocrinologist which resulted in normal 9am cortisol but with extremely high testosterone and eastogren levels, he asked for me to stop taking all supplements for three weeks to do a ‘white canvas blood test’ and this I did over the Christmas period.

Continuing with all the supplements apart from the glandulars began using Isocort, 2 pellets three times a day which really helped, and combined with 1-3mg Melatonin, 500mg Valerian, 10mg Amitriptyline at night (I had been tapering myself off the drug as it was making matters worse) I began sleeping a bit better but the isocort gave me terrible stomach pains. Although felt absolutely awful throughout the next day ( I was taking up to 150mg Amitriptyline in the summer and wanted to bring it down as being `drugged` up only helped my mood and I hated it the wired feeling) but as soon as I did any exercise, my body seemed to go into overdrive. Shaky, wired, my mind unable to shut down.

I was continually ‘wired and stressed’, I was depressed, never able to relax, angry, fed but so tired it was unbelievable. The montage images and flashbacks would race through my mind all night and I would wake up already in a panic attack I actually looked forward to coming off all the ‘meds’ just to be able to feel my own emotions and brain again, I was a mess. I had started drinking to try and be sociable, and at first it helped (I believe it to be mixing with the Amitriptyline to make me extra drowsy) but my mood swings were awful. One thing to note, Just before Christmas, I had a fasting day I ate nothing, drank water, still took my meds, and took the usual Melatonin, vivarium and amitriptyline before bed, I slept for 8 hours, It has been years since I had done this. It felt amazing, and I felt really well the next day, but that was the only time it has happened.

January 2012

Just after Christmas I began withdrawing slowly on the supplements and Isocort for the blood tests in January. I began even more exhausted. For almost two weeks I could not get out of bed, and I was becoming even more and more unable to deal with emotions, any form of stress (even the slightest things). My relationship had finally ended because I couldn’t be anyone, be the person I am/was, and at first this was ok, but slowly depression set in so strongly and the anxiety went bezerk. I found I couldn’t even fall to sleep, never mind stay asleep, my mind just become a wash with flashbacks of memories and an underlying sadness that this illness destroyed something that was so special to me. Anxiety has become worse than ever before, once it was held in my mind and stomach, now it was cursing through my arms, legs, and shoulders. Sometimes I wake up like I have been lifting weights for five hours, tight and strained.
Although supplements I’ve tried with no success

Relora
MRM Relax All
Gaba

They seem to relax me (apart from the GABA which makes me feel like I’m dreaming awake), but nothing helps me sleep. My mind seems to be continually wired ‘ON’, and any form of exercise makes it worse. I’m so physically tired, but I cannot shut down.

If I take a Xanax or Zopiclone sometimes I manage about five hours sleep, but the next night the insomnia gets worse, and a couple of days later I get anxiety ‘kick backs’ but sometimes it’s worth it just for the sleep.

March 2012

As my ‘states’ seem to vary from month to month, I thought I best to outline how I am at this moment.

The last few weeks I have been getting more and more depressed at the situation with my health. I have been thinking about suicide daily, and on Sunday I couldn’t stop myself crying I knew I had to do something. I asked the GP to put me an SSRI to try and lift my mood to give me the energy to get back up and try and get better. He has put me on 50mg of Zoloft which I have been taking for four days. The endocrinologist white canvas blood tests show what he feels is fine thyroids and cortisol, but a vitamin D deficiency, high testosterone and high oestrogen. He has ordered an ultrasound and CT scan due to this, but feels that there is no endocrine problem unless the scans show anything up. His initial though was that the high levels where from the supplements not having their hormones removed. I have to wait another two months for the results.

I was taking Vitamin D 1000mg, 1000mg Vitamin C Ester C, Magnesium 1000mg in the evening and alternate sleeping with valerian, melatonin and zopiclone and Xanax. I have just ordered some liposomal Vitamin C.

On some days I find I feel better than I used to in the morning, up until lunch time or a little late when I get a horrible ‘lull’ but every evening is the worse. I get anxiety attacks, head aches, flu like symptoms, feeling my pulse through my legs and although trying to go to bed at an early time, I seem to resist staying up later (I think because even on the days I do try t go sleep, I either cant sleep, or wake up earlier than 3.30am). I take whatever medication I have for that night, but still wake up at 3.30am unable to get back to sleep. If I use Xanax or Zopiclone, sometimes I get longer, 4.40-5.00am. I have terrible anxiety just before going to sleep and thoughts, memories all flash through my mind like a montage, my heart rate goes up and I have to stay till it passes.
I have been off work for a week now and haven’t left the house. Work causes my stress to sore, even with the simplest of duties. I just cant seem to ‘think’ logically and am always over emotional.

I’m 30 now, 6f 3”, 178lbs (I’ve put on over a stone in a year and its still going up), I do smoke (I know this is a big no no but sometimes it’s the only thing that’s gets me through), I don’t drink regularly (only lately as ‘escapism’) and other than the occasional marijuana I don’t take recreational drugs (I have in the past). I’m a vegan use Greens super food in the morning with added Sea Salt , don’t eat fatty foods, more vegetables, whole pasta, nuts, brown rice, tofu etc

I’m managing to hold on to a job (just – very understanding Charity but I think they are getting tired of having no ‘proper’ explanations) I have already lost my partner, most of my friends, I have sent most of what I have with tests, supplements etc.) And the best friend who I live with is growing tired of her flatmate always sick, moody and always awake. I’m not the same person anymore, but I know the old me is still inside. Physical activities is what I miss most, I’m only ever happy when outdoors doing something physical. The weight gain is becoming unbearable around my stomach and the ‘stressed fatigue’ is so bad I feel constantly sick. I try to exercise, a short run, some karate, mountain biking, but it all seems to make things worse, especially sleeping…I feel like I have the worse flu ive ever had for days afterwards.

March 2012

Started nuitritional coaching with Dr Lam. See next post.
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