What I have tried thus far: Part 3

Prior to embarking on the healing journey to Bali, which I spoke of in my previous post, I met a lovely woman who had approached my mum when she overheard her speaking about me and ME/CFS at a cooking class. She suffered from ME/CFS herself and was really keen to share what had worked for her and what she believed would work for me also.

We met over the phone a few days later. She spoke to me about how she flew to Canberra to consult with a practising biologist Bill Giles, who himself had suffered ME/CFS, recovered, and was now treating a variety of chronic illnesses from the Canberra Medical Ecology Centre. He has a book published which I purchased called ‘No More Chronic Fatigue’ which addresses what he believes to be the three main contributors to ME/CFS: emotional stress, grain lectins and herpes viruses. Obviously not exclusive to these but this is from his own experience and trials with patients. He has undergone thousands of clinical trials with patients removing grains from their diet as well as fructose free trials. When speaking to her about this new approach I got soo excited! There was new hope. I was about to go to Bali though so I would have to begin the trials after my return.

After returning from my healing journey worse for ware I read his book and then contacted his office for an over the phone cosult, so I could get some more personal and in depth assistance. They then sent me an information pack and charts and questionairres to chart my response to the trials. Each day I had to mark my major symptoms from 1 to 10 on this chart and after the month, link these up.

The overall protocol that was recommended included:

• Eliminating grains/grain lectins

• Deal with any underlying emotional stress, treat any viral bacterial and fungal infections.

• reducing fructose intake to a bare minimum,

• No processed foods, no sugar, no dairy

• Limited amount of nuts and seeds

• Real, whole foods

• Light yoga and meditation

• Authoimmunisations for HHV6 virus

• Food rotation

• During this time I was also taking probiotics, prebiotics and other supplements from previous regime

• Meals were large and breakfast was usually a 4 or 5 egg omelette with left over vegetables cooked in coconut oil. Lunch and dinner were similar and usually consisted of some form of free range, grass fed, chemical free meat, starchy vegetables such as potato, sweet potato, carrot, pumpkin and greens. For desserts I experimented with lemons, eggs, stevia, agar agar and cinnamin.

These recommendations were personalised to a degree and the book does discuss some of these more in depth. In Bill Giles book ‘No More Chronic Fatigue’ he states “Many health professionals are unaware of the defence chemicals in grains called lectin proteins, which can cause distruption to our immune systems. Plant physiologists say that lectins are involved with plant defence against viruses bacteria, fungi and sometimes to animals that eats them (including humans.) when people eat grains, their immune systems are challenged and, if chronically ill, they wil have poorer than normal ability of recovering their normal immmune strength and good health if they continue to eat grain foods.” These lectins as well as many other anti-nutrients in the bran of various grains such as phytic acid are essentially the grains immune system and keeps the grain fresh until it is sprouted and brought to life again. They can keep for up to a hundreds of years because of these defences. In his book he includes many graphs from clinical trials. One in particular shows how as the immune system weakens certains foods become less torable and reactive to the sufferer. From clinical observation the first foods that the body cannot tolerate and reacts to is grains, then dairy, fruits, herbs, vegetable and lastly meats. The more severe the immune dysfunction the less the body can tolerate. From a biological and evolutionary point of view grains and dairy have not been a staple of our diets for very long and our ancestors only ate very small amounts of fruits. It makes sense that these can easily become less torable, even in healthy individuals as it takes a long time for our digestive systems to evolve from eating predominantly meat, eggs, vegetables, herbs, soft seeds and fruit on occassions, to consuming a diet high in grass seeds. You may be interested in reading ‘Grains; The Double Edged Sword’ by Loren Cordain. This document will explain this subject further and more in depth.

Following these trials I became very interested in an evoluationary, paleo and stone age diet as recommended by ME/CFS specialist Dr Sarah Myhill. It made so much sense to me.

Verdict:

Although these trials were not a cure-all. They helped immensely with gut issues associated with excess fructose intake and the difficulty of digesting grains. I wont go into too much depth of what these symptoms were (embarrassing) but I am sure many understand how it feels to not tolerate such foods. One thing this regime cured was my hypoglycemia. Prior to this regime I ate quite a high carbohydrate diet and if I did not eat every 2 hours I would begin to feel severely faint, become very shaky, exacerbated ME/CFS symptoms and feeling very emotional to the point of crying. So I am very thankful for that. It has been well over a year since implementing these changes and I have continued to be grain and mostly fructose free. It makes such a difference for me. In hindsight this was just the beginning of the journey to finding out what truly works for me from a nutrition point of view.

If you know you can tolerate grains, dairy and some fructose or just cannot give them up there are some particular preparation techniques and certain products you can choose which make eating these more digestible and healthy. I will speak of these later.

If you would like further information please do not hesitate to ask!

And remember what I am sharing is to urge you too look further into things and are my personal experiences. I am not a medical professional.

What I have tried thus far: Part 2

It had been roughly a year since being diagnosed ME/CFS and I felt I needed to try something new. I truly valued what I had learnt from my initial healing regime but I was not seeing the results I expected and neither was my doctor, it seemed like he was giving up on me. A dear friend of mine was keen to go to Bali to get some clothing designs made and I felt I should join in on the project. Having a goal as such seemed like the perfect way to push myself to get better. I also had this romanticized idea that I could go to Bali find a healer and come home healed. Far too ‘eat pray love’, but without the divorce, the love affair or the bladder infection. So I booked the flights 4 months in advance, that seemed enough time to improve.

Unfortunately when the time came round I was not feeling any better. Because I had not accepted the position I was in physically I could not let go of this opportunity and convinced myself that I had to go, I would just take taxi’s everywhere, relax by the beach, soak up the sun and find a healer. It will be fine!

After the one hour connecting flight from Hobart to Melbourne, I knew I was in a bit of trouble. Struggling to walk through the airport, muscles aching, head pounding, energy lacking. I arrived at my friend’s house, and put on a happy front, but soon I was feeling so bad I couldn’t help but cry, she was so understanding and told me to lie down in her room. The following day we took a 7 hour flight to Bali, we were seated right up the back of the plane, with all the families and babies screaming their lungs out. My dear friend had acquired a stomach bug somehow before even arriving in Bali and was beginning to throw up next to me. Shit!

After arriving in Bali and driving around for hours looking for accommodation we finally were at rest in our moldy, humid hotel room. The weather was dark and the rain was torrential. What were we doing here.

We decided to go to Ubud the next day, the organic food and produce, yoga, mediation and massage hub of Bali. Our transport to Ubud was a tiny van, its engine was red-hot under my thighs, and it sounded like it was going to blow up any moment. A french man joined us, sitting in the back, smoking during the entire journey. That made me feel magnificent.

Eliminating my pain and fatigue in Ubud I was in my element, amazing organic cafes, cheap massage and pampering, lovely accommodation and cute monkeys.  The only negatives were that every single, bloody time we had to get a taxi, which was ALOT, we had to barter, this was so exhausting. Not long into our trip my sister joined us, providing further a feeling of comfort and home that family does. The days were filled with eating organic food at the most adorable cafes, massages and just chilling out. It was still raining alot at this stage, but I guess it made me feel a little less guilty for napping alot.

We then took a very disturbing boat ride over to an Island off Bali. The swell was big so the ride was awfully bumpy and the drivers of the boat were having trouble with the engine, which they attended to near us whilst smoking in close proximity to the fuel tanks. I though we may die if the boat over turned or it blew up! After arriving on the island thank fully we found an ausome local, almost immediately who had some very decent accommodation which we stayed in the entire time. The island was amazing, delightful aqua water, beautiful waves and a relaxed vibe.

Anyway to cut a long story short whilst sitting in one of the organic cafes in Seminyak a woman over heard us speaking about finding a healer for me. She snapped around from her chair and told us about a healer named Marion, who had healed her daughter. She called the healer for us and we organised an appointment, it was going to cost me 80 australian dollars, but I was sucked in, I had to see her!

• Healer number one, Marion was by profession a homeopath.

At her amazing villa in the back streets of Seminyak she asked for a medical history, she then spoke to me about brain toxicity from immunisations and various chemical exposures. She got out her pendulum and began swaying it in front of me. She then began writing down different numbers, sequences and grabbing different homeopathic sugar pills and placing them in individual sachets. She did this very fast. We spoke a bit more and recommended a gluten and casein free diet. She then placed my homeopathic remedies in her hands and began moving her conjoined hands up in the air above her and she spoke a prayer, She then stood up as did I and kissed me on my forehead before saying goodbye.

Verdict:

I did not see any results and I ran out of money quicker because of the expense. She made some valid points in our consult, but somehow her sugar pills did not cure me.

At another trendy cafe in Ubud my friend decided to approach a mysterious man who we kept on crossing paths with. She asked if he knew of any healers in Ubud. He spoke of a french woman, who we could not reach in the end. But soon after speaking with this man an american woman approached our table to tell us about a healer nearby who did remedial massage. She sweared he had healed her of illness. So we found him and made a booking.

• Healer number two a young man who had apparently been born with healing powers and was a remedial masseuse.

The remedial masseuse ushered me to his massage room. I stripped off and lay on the table. He began to massage in heavy, firm strokes on my neck and back. I had never experienced such a style of massage as it seemed to focus on completely different parts of the muscles and tissues. To be honest, it was extremely painful, but I was up for the challenge, a bit of pain was worth the session being affective. As he massaged he asked quite a few questions and he kept on saying I had really bad energy and was coughing and spluttering through his mouth. He told me I was not sick and that I just needed to meditate more and go to a particular river outside a special temple and wash in the water. I just had bad energy. His questions became quite personal and it seemed as though he was trying to evoke emotions. He began to massage so hard that he forced the table I was on into the wall a metre in front of me. After an hour and a half he stopped massaging and he told me to sit up on the table with my legs crossed. He jumped up and sat facing me, put his hands on mine and asked me to meditate. He then sat behind me and told me to close my eyes and he placed his hand on my neck and pressed into a certain part. An overwhelming feeling of devastation, emotion, despair ran through me and I began to cry. He told me normally those he works with cry within the first hour and only a few did not cry during the massage.

Verdict: It was painful and I felt alot worse after the session. There were no results seen apart from being slightly disturbed.

Believe it or not I got to experience seeing a third ‘healer’. In yet another organic cafe we sat speaking of healing, health and food and all of a sudden the woman sitting next to us had coaxed my friend to sit with her. My sister and I were distracted my another visitor to the table but I could see they were having conversation, but that my friend had begun closing her eyes. The healer, in the middle of the cafe began moving her body like a serpant and swinging her arms into the air, she was snorting and breathing very loudly with her eyes half open. They spoke for a while and she repeated her body movements a number of times until my friend left her table and came to me and told me that the healer wanted to see me.

• Healer number 3, a cosmic, psychic healer from the USA

The third healer asked me why I wanted to be healed, so I told her about my health. She explained how she discovered she was a healer and had helped a lot of people ever since. She was very kind and understanding. She then began to move her body like a serpent, and waving her arms up in the air, breathing heavily, slightly sorting. She repeated these movements a number of times and writing down numbers words on a piece of paper. She explained that people can have chords attached to other people from previous lives. She told me that in my past life I was the leader of a very large tribe. There was a tragedy and that many people in the tribe relied heavily on me. She said that those people still had chords attached to me and that it was draining all my energy. She asked if she could have my permission to cut off all the chords. She said I had close to 80 chords, the most she had seen. So she began to move her body once again, and again, moving her arms closer to me trying to cut my chords. After a while she asked if I felt better. To be honest I felt worse, having to sit there and talk to her for so long was terribly exhausting. I ended up being at her table for nearly an hour as she continued to place her hand near me firing out her healing powers. It got to the point where I had to say I am sorry but I just don’t feel any different!

Verdict: I wish I could say that this woman healed me, but once again it just exhausted me, I couldn’t really relate to what she was saying about my past life and the chords, but I am grateful she took the time, in the middle of that cafe to give it a go. It was free.

Unfortunately as the end of the trip neared I felt my condition worsening and that I was going to seriously crash at any moment. I couldn’t really speak and my symptoms had exasperated. I was so thankful I travelled with two very understanding, beautiful ladies. After arriving home I did officially crash severely, which I was not surprised by at all! Unfortunately I could not study twice a week anymore and after finally giving in to my illness my condition worsened further. So in a nut shell my advice would be not to travel unless you have recovered!! To focus on the positives, after the trip I finally realised I had to accept my condition in order to heal. And unfortunately this meant I could not do the same things I could do before becoming ill, it does not mean forever, but just until I am healed.

What I have tried thus far: Part 1

I have tried many, many different alternative modalities; conventional and integrative doctors, various supplements and treatments in an effort to heal from ME/CFS. It is to the point where, there is not really a lot more I can try.

It has been a roller coaster of ups and downs with the hope that ignites when seeing a new practitioner, facing a new healing protocol and the downs when realising that the treatment isn’t working and the fear that the light at the end of the tunnel will never appear.

But in hindsight I have discovered nothing, well 99% of what I have tried has not been a waste. I have learned soo much from everything I have tried and from all the practitioners I have consulted with. And surely there has got to be some accumulative effect of everything you have tried right?

I was very fortunate that the first doctor who diagnosed me with ME/CFS had very sound knowledge of ME/CFS and was up to date with the latest treatments, scientific studies and general management of this illness. At our initial consult he ordered tests for standard pathology, mycoplasma, herpes viruses, salivary hormones and a comprehensive digestive analysis. He also provided me with a small book with diet, lifestyle, environmental recommendations. It also included an explanation of how ME/CFS manifests and touches on the effects on the brain, liver, immune, mitochondria and the gut.

His program included:

• Weekly vitamin c and b complex injections

• The prescription of 17 different supplements including:
• Buffered vitamin c
• B complex
• Brain antioxidants
• NADH
• Peak ATP
• N Acetyl Carnitine
• Adrenotone
• R Lipoic Acid
• D Ribose
• Intestamine
• Probiotics/ Prebiotics

• An organic diet:

Organic red meats, free range, chemical free chicken and eggs, wild fish.

Organic vegetable and fruits. Daily organic, fresh immune vegetable juice.

Organic tea

Noni juice shots

Avoidance of all colouring, flavouring and preservatives

Avoidance of sugar and favour stevia

• Avoidance of electromagnetic radiation when possible
• Avoidance of chemical fumes
• Pacing and to never overtax the brain

So there you have it, my very first protocol which I followed for approximately 10 months. I believe that this approach has the potential to be very affective but unfortunately it did not work for me at the time. I still include much of this protocol into my healing regime but I felt that there was an overload of supplements for me personally. I am also very strict about the quality of the supplements I use and avoid all binders, fillers, additives, preservatives, which makes finding the right supplement harder and many of my doctors recommendations did not fit the bill. The other problem whilst implementing this protocol was my attitude to my illness which would of course had an impact on the results seen. I still had not fully accepted my illness and was pushing myself to attend school a couple of days a week, which was insane in hindsight considering the severity if my illness.

If you would like any more details please do not hesitate to contact me.

How I got here: The diagnosis

Good afternoon readers.

In my previous and very first post I addressed in brief my history up until the age of 20 when my body finally said enough is enough!

At this very stage I was studying a graphic design diploma which I had begun earlier in the year and was loving it and working as a waitress at a lovely cafe once or twice a week in my capital city. It was strange because at this time before falling so ill I suddenly felt a sense of vitality in my physical self which I had not felt in years. I had stopped drinking and had made slight changes to my diet after seeing a naturopath, it seemed to be paying off. But unfortunately after a trip away with friends and 2 consecutive weekends of heavy drinking my body had other ideas and I slowly realised how serious my situation was.

After falling very ill with what once again felt like a terrible case of the flu, I took a couple of weeks off school and work, but this thing did not want to budge and the flu manifested into infection. After a few weeks and no changes I visited the doctor and I was told it was a virus. After a few more weeks I visited another doctor at the same clinic, she said the same thing. I felt half dead, there was pain everywhere! I then visited a third doctor at the same clinic by this time it had been nearly 2 months, she prescribed antibiotics, they did not help and I continued to get worse. A couple of weeks later I saw my fourth doctor in my capital city, she had a reputation for a more integatrative approach and prescribed natural remedies over pharmaceuticals. By the time I saw her I felt like my body was going to give up on me, like lead was running through my veins and muscles, I was so weak. After IgG, IgE allergy tests, general pathology she told me I was like a dodgy car that just needed some tweaking, and that I had leaky gut syndrome. She then prescribed me more antibiotics for my sinusis. My condition continued to deterioate and the antibiotics were wreaking havoc on my system, particuarly my gut. After returning to the same doctor feeling even worse, she concluded I needed to try some more antibiotics. They once again did nothing and on returning to this doctor one more time she believed I needed two types of antibiotics at once to combat the bacteria in my sinuses. By this stage I was struggling to walk and words cannot describe the pain and the fatigue. She did a swab of my sinusis after this and found no nasty bacteria whatsoever. This doctor had got me all wrong, so it was onto the next doctor! It had now been a few months of no real answers apart from IgG allergies and leaky gut, but I knew there was something else going on. It was then I consulted with another integrative doctor.  I dragged my body into his office and tried to explain my situation without bawling. He asked ALOT of questions and wanted a thorough history. Within ten minutes he said to me ‘you have Chronic Fatigue Syndrome’, and my mother and I said ‘ what the hell is that!’ We both seemed to fight the diagnosis initially, I thought it was a condition where people involuntarily fall asleep ( far from it.) But when he began describing the condition I matched the criteria perfectly. What a pity, I was still hoping I had something I could just take a pill for, and the pain would all be over.

Has anyone had similar experiences with their diagnosis?

Doctors do need to be more informed about diagnosing this condition, I believe in my case if I had been aware of my condition earlier I would not be so ill.

Image by photostock

How I got here: A brief history

Hello and welcome to my first post!

I thought I should begin my blogging journey with a short introduction to how I got to where I am physically, incase anyone is interested! I definitely do not want to bore you with too many details and I obviously understand the great difficulties many ME/CFS sufferers face with reading. So il try to keep it short and sweet. I also ultimately want this blog to focus more on positivity, healing and conquering, not suffering. You can read a general summary about me in the ABOUT section and a more detailed description of ME/CFS under the ME/CFS section.

In short one reason I suffer from CFS to such a severity is because I failed to listen to my body for too many years to count, and was also not aware of what these symptoms meant. It was sending me some pretty CLEAR signs that it was struggling, but I ignored them. I guess what was difficult to understand, as a teenager at the time was why I felt  this way when I treated my body like everyone else did. At the age of 16, 17, 18 and so on many things were high on my agenda like parties, new boyfriend, school work and surfing… not healing my body! So I pushed through the symptoms when I could and began a frustrating journey of pushing myself, crashing* then resting/recuperating, pushing, crashing, resting!

*Crash: A sudden, extreme worsening of symptoms after a trigger event which can vary in severity depending on the extent of ones illness.

I now realise my doings did not help, but they were only a contributing factor to this multi faceted illness. The icing on the cake. It is clear now a range of factors caused the onset of ME/CFS; genetic predisposition, secondary predisposition and trigger events. See the ME/CFS page for a more detailed description.

To give you an idea of how my illness developed and incase you are experiencing symptoms and not sure you fit the bill here are some dot points you may relate to.

• My illness had a very gradual onset initially, but after many years of mild to moderate symptoms including feeling like I was always walking that fine line between my body just coping and falling ill, post-exertional fatigue and flu like symptoms after generally ‘doing too much’, group sports, running, drinking; frequent weekly or fortnightly viral/bacterial infections, loss of stamina, feeling like I was getting a virus most days, there was a dramatic deterioration to severe symptoms after a range of triggers. For many it is a sudden onset, but when they evaluate their life realise it did develop over a long period.
• I had always suffered dodgy digestion since I can remember but did not know any different. They don’t teach you about the quality and efficiency of your gut function and bowel movements in school. I also did not realise your digestive health was so vital if not paramount to overall good health. Scientists now know 70 to 80 percent of your immune system lies in your gastrointestinal tract. ME/CFS specialists such as Kenny De Meir and every integrative doctor, naturopath, health care practitioner I have consulted with cannot emphasise enough how crucial gut health is in ME/CFS and any chronic illness. There is now a lot of evidence strongly linking poor digestive health primarily with ME/CFS. I am yet to meet a ME/CFS sufferer who does not suffer significant digestive issues.
• These digestive issues worsened as I moved into my late teens, early twenties with the development of IgG food allergies, leaky gut syndrome, irritable bowel and systemic candidiasis particularly after beginning the pill.
• My immunity to viruses and bacteria was very poor and decreasing.
• My crash periods began to lengthen from weeks to months at a time
• At the age of 16 there was a clear change in my overall feeling of wellbeing after a virus which stuck around for 6 months or so. I managed to do some ‘normal’ activities during this time but the ‘viral’ feeling did not cease and the severity fluctuated with my activity. I now believe it was a flare up of HHV6 which my body could not push into a dormant phase. My overall health never felt the same after this event.
• I continued to push myself, suffering the consequences and beginning to seek help from conventional medical practitioners and naturopaths without any answers. There was apparently nothing wrong and as the doctors said I was just ‘one of those people that get sick all the time’. What complete, utter bulls#*t!
• It is also interesting to note that during the ages of 16, 17 and 18 I had various immunisations from the 3 stage cervical cancer vaccine, meningococcall, tetanus and typhoid and hepatitis A and B for South East Asia travel which coincidently coincided with many of my crash periods.
• By the time I was 19 I was experiencing these crash periods for months at a time 2 or 3 times a year and beginning to become extremely anxious about the way I felt and the increased severity of my symptoms each time my health took a dive.
• It was not long after my 20th birthday, after years of trying to push myself through my symptoms and after 2 consecutive weekends of heavy drinking and drowning my sorrows after the breakup of a particularly strange, short lived relationship that my body finally gave up and crashed so severely I have not been able to find improvement thus far! And then things got worse, and then worse and then well, worse. 2.25 years on, trying almost every bloody modality, doctor, health practitioner, freaky healer, diet, supplement known to man I am still fighting for my health back, but finally I feel, instinctively that I am on the right track to recovery. It has not just been educating myself about ME/CFS, health, nutrition, mind, body and soul that has taken so long but truly accepting the position I am in that took a long time, and without that acceptance in place I could not truly heal. I was for a long time looking for that silver bullet, that quick fix to regain my health, but this does not exist. Healing from ME/CFS requires a holistic, integrative approach covering all angles of health and wellbeing. I will elaborate on these approaches in my future posts.

Can you relate to my onset of ME/CFS?

Was your experience a gradual or sudden onset?

I would love to hear readers experiences as one of my goals of this blog is to come into contact with others and their stories.

Feel free to contact me by email if you want to ask any questions