Recent healing chronicles

Hello! Finally I am back and ready to share with you what I have been up to recently in terms of healing. As I mentioned previously, I packed my bags and made the big move from Tasmania to Byron Bay. I felt so strongly that this is what I needed to do and on coming here everything has felt so right. Although the move was physically challenging, emotionally the transition has been fairly seamless. I live with like-minded people, a kinesiologist and a personal trainer/yoga teacher. We support and inspire one another. I do feel blessed to be here.

In terms of ME/CFS, it has been a journey as per usual. The move really knocked me about, but thankfully I didn’t crash and have continued with my treatment protocol. My progress is still positive, but slow. I find I can do a bit more generally, but also don’t feel very different in terms of symptoms. It is only when I look back that I can see progress.

In terms of diet I continue to:

  • Eat a wholefoods, organic, unprocessed diet that my body is biologically adapted to digest and assimilate and that makes me feel the best that I can. Avoidance of IgG allergens strictly: dairy, soy and gluten. Avoidance of foods that for me cause digestive upset and disrupt homeostasis: sugar, caffeine, legumes, grains, hydrogenated oils and processed foods.
  • Focus on fresh, vibrant, organic vegetables and fruits, nuts, seeds, organic meat, poultry, eggs and seafood.
  • Include fermented foods for probiotics such as raw sauerkraut, water kefir and coconut yogurt.
  • Drink lots of pure, filtered water with concentrace mineral drops. Additional raw apple cider vinegar on the mornings. I use this filter.
  • Eat adequate protein and fats to prevent blood sugar crashes.

The mind:

  • I continue to practice mindfulness meditation, do a daily yoga nidra practice and monitor stress levels as best I can.
  • I have been enjoying incorporating positive affirmation and seeing my kinesiologist to clear any emotional baggage.
  • I remain positive.
  • I continually work on not giving power to my ailment by thinking about it. It is impossible to forget, but its important to attempt to not associate and/or identify with an ailment.

Exercise:

  • Yes I have started to exercise! But in a specific way that works for me. For most ME/CFS sufferers it is common for aerobic exercise to be particularly difficult if not impossible (that was me for nearly 3 years.) I find now that I can generally do anaerobic exercise integrated with yoga.
  • My workout begins with yoga, then I do basic weights 3 x 20 repetitions of 4kg. I started at 1kg and worked from there.
  • I also often do very light yoga mat work with lots of gentle rotations and grounding poses.
  • I stroll to the beach when I can and dip in the ocean.

Nature Cure:

  • I spend plenty of time in the sunshine, in nature, I breath, swim in the ocean and remember health relies of physical and mental equilibrium.

Specific supplementation and protocols:

  • I continue to take magnesium gluconate and malate before bed.
  • I take high dose vitamin C with bioflavanoids for its anti-oxidant, anti-inflammatory, anti-viral properties.
  • I take vitamin D3 and K by Thorne.
  • I began the Methylation B-12 protocol 4 months ago after doing testing for a partial methylation block through a US lab. It showed that most of the nutrients required to fuel the methylation cycle were deficient. Methylation is responsible for hundreds of crucial reactions in the body. Without optimal methylation the immune system mal-functions, the body cannot detoxify, ENERGY cannot be produced, DNA, mood and inflammation are effected.
  • My supplement protocol includes: Methyl B-12, Dibencozide, Potassium Gluconate, Sam-e, L-Carnitine Tartrate,Β  Active Folate 5-MTHF and Thorne Methyl Guard.
  • After much hesitation I underwent a rigorous drug protocol, formulated by the Centre for Digestive Diseases Sydney for treatment of blastocystis Hominis. I actually think doing this protocol has helped, although progress it slow. I understand the time it may take for me body to heal after such treatment.
  • During this protocol I continued to eat an abundance of fermented foods as well as using Dr Mercola’s multi-species probiotic and Perma-Clear by Thorne which contain gut healing nutrients such as glutamine, glucosamine,Β saccharomyces boulardii and quercetin. The protocol involves the use of anti-biotics which harm the beneficial gut flora and this inner eco system must be maintained and replenished.
  • I tried LDN, Low Dose Naltrexone. Unfortunately I could not tolerate this ‘side effect free’ drug. I attempted to take 3mg and then 1mg the following night but it caused severe headaches, nausea and caused me to feel like I was crashing. It brought back an array of symptoms which had become generally milder. Flu-like symptoms flared, tight chest and breathlessness came back, pain skyrocketed!! I am still investigating my reaction as it is atypical, but because of the nature of LDN and its immune modulating properties it is likely the reaction is due to extreme immune dysregulation and/or viral load.
  • I am going to begin takingΒ Lauricidin Monolaurin for its anti-viral, bacterial and fungal properties.
  • I have purchased a portable far infrared sauna to accompany my healing regime. Particularly to aid in detoxification and for pain relief and relaxation.

My healing is still slow but it is happening and that is what I focus on! I believe the methylation protocol is helping, but it requires patience. I am aiming to continue for another 2 months to see further results. With the introduction of these nutrients to fuel methylation, the body is able to begin detoxifying properly after a prolonged amount of time which can cause unpleasant detox reactions. I remain aware of this fact particularly when I have dangerously high heavy metal levels.

I also wanted to add that a new ME/CFS diagnostic guide has been formulated for practitioners and it is fantastic:

http://www.mecfs-vic.org.au/important-information-medical-practitioners

Now you have an idea of what I have been doing, next I will speak further about the mechanisms behind the new approaches I am applying to healing!

Advertisements

8 thoughts on “Recent healing chronicles

  1. Great to hear you’re doing better. I loved Byron Bay, too. As for the LDN: I haven’t tried it, but I had similar symptoms when taking alpha lipoic acid (ALA) earlier this year. It wasn’t until after a mercury chelation that I started to tolerate ALA. Apparently, it heavily detoxifies the cells but, unlike a chelator, it doesn’t help the body drive out the toxins afterwards. Maybe the LDN acts the same way?
    The chelation was also pretty rough – especially on my gut, which I’m still cockering up as of yet – but I still feel a million times better now!
    Have you had your heavy metal levels checked? Maybe that’s the missing link.

    1. Hey Ina! Thanks for your comment. Yes I had urine provocation heavy metal testing done which showed high levels particularly mercury and arsenic. I underwent chelation with R-lipoid acid and Thorne’s captomer DMSA, cilantro, high dose vitamin c etc. It was certainly effective but because of a methylation block my body couldn’t process the high levels leaving the tissues, organs etc. LDN works by blocking opioid receptors in the brain for a short time which in lows doses causes the body to produce more endorphins, which has powerful immune modulating effects. It appears it is still debated whether the effects up regulate or down regulate immune activity!! I think the reaction relates to T1 helper cells possibly kicking into gear and dealing with latent viruses possibly. It’s highly effective for some people.
      Yes Byron is lovely! So lucky!

      1. Ah I see, now I know how LDN works. Thanks for the explanation! πŸ™‚
        As for methylation: as far as I know, it’s the very toxic load in the body that is blocking the methylation (mercury blocking the b12 or something) – which, in turn, keeps your body from detoxifying. Talk about a catch-22. That’s why it’s so important in a situation like that to detoxify with true chelators – like DMSA, for example – that have the capability of binding the heavy metals long enough so that they can be quickly egested without putting a strain on the system.
        ALA or cilantro wouldn’t be chelators in that sense because they make the cells release their toxins – very effectively so – without binding these toxins afterwards, or not long enough. (Thinking of it, I had even worse reactions to cilantro than to ALA.)

        Taking DMSA wasn’t a walk in the park either, but it was the only thing that helped me to get rid of the mercury in my body without (seemingly) killing me in the process.
        (I think it was ironically a Candida treatment I did last year that flooded my body with open mercury and turned a hidden, chronic contamination into an active one – which turned into CFS eventually.)

        Sure, I’m still recuperating from CFS, and still have some issues to deal with (Candida…), but since the chelation I feel as if my body is finally able to take care of itself again, as if I’m in some kind of (very slooow) upward spiral again instead of the downward spiral so typical for CFS.

  2. Great to read your update Amy! So interesting. It’s also lovely to hear you can just stroll to the beach and take a dip, i’m looking forward to doing that once the weather warms up here.
    Thanks also for your previous message. It would be great to email you, thank you.
    Will just process some of this new information . .
    Are you still taking CoQ10 and Glutathione? I am wanting to get a better source for these supplements. I’m defintely keen to find a good source of Potassium and Magnesium too. Do you order yours online or are they practitioner only products?
    I’m wondering if I need to be taking B12 when i’m eating all this beef liver, spirulina, raw egg yolk etc..

    Also, re the comment above – I too had a terrible reaction to Alpha Lipoic Acid, the few times I tried it (6 months into my cfs).. Whoa. It honestly felt like I was dying. I’ve never been tested for heavy metals but I’m starting to realise it’s very likely I’ve got ’em. I wonder if it’s worth testing.. Maybe best to get the methylation process happening before any chelation?

    Ps. have you ever explored any herbal medicines? I’ve tried various ones on and off over the years , and have found some of them very helpful.

    Anyway, thanks again for the blog, it’s amazing. I will send you an email too though I’ve just realised I’ve written lots here! πŸ˜‰ Best wishes, Kaela

    1. Hey kaela! Yes alpha lipoic is potent. I would get an intense taste in my mouth whenever I took it also. I took r-lipoic acid which is the most bioavailable form. I am not currently taking coQ10 or glutathione. I was. The only glutathione that is worth trying is liposomol glutathione or transdermal because it is easily destroyed in the digestive process. Ultimately it is best for the body to create its own, this is what it naturally does, as long as it has the precursors, which is why methylation is so crucial! I buy all my supplements basically from Iherb. I mainly use practitioner only products such as Thorne Research. I am pretty pedantic about the supplements I use, only best quality I can find. If u like I can email you a list of supplements I use?
      In terms of B-12, if your gut is functioning well than its likely you have efficient stores of b-12, if not you may not be absorbing it and you could likely benefit from sublingual b-12 because it is absorbed straight into the blood stream.
      It’s almost guarenteed you have heavy metals, most people do because of modern day environmental toxins. Testing is quite expensive. I would assume you do, especially with your reaction to lipoic acid. Yes from my experience very important to make sure you are methylating first. I have tried various herbs over the years. Would love to hear what has helped you!

  3. Hi Amy, I found your blog a while ago, and then promptly lost it!. Glad to have refund it again. As another lovely soul who also has CFS I loved this updated post. I’m interested to know if you came up with the weight exercises yourself, or did you have any advice. I’ve been thinking I need to get on to something to build muscle strength,- core strength is so important for posture. I’m also interested to know more about the Lauricidin Monolaurin- it’s related to coconut yeah?- particularly for fungal issues. Thanks nat x

    1. Hey Natalie! I am so sorry I am only just getting back to you I missed your comment. Lovely to ‘meet’ you! I was lucky enough to be living with a great personal trainer who helped me with the exercises. I have been doing the weight training for 3 or 4 months now and can really notice a difference. It hasn’t cured my condition but makes me feel stronger and better about myself. Yes Monolaurin is lauric acid extracted from coconut oil bonded to glycerin so it can be consumed in large doses. I initially purchased the patended product Lauricidin which I had to get off ebay but I am now going to try some monolaurin capsules off iherb as that is where I buy my other supplements and it ends up being very expensive buying from America individually. I think it may be helping so am going to continue for a while and will share my resuilts. It is great for candida but is also anti bacterial and antiviral. Cheers, Amy

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s