Auto Immune Mismanagement - and Hope
This blog was set up to direct people, no matter where you are in the world, to finding answers for free to your health - but it all began with a personal case of fibromyalgia/neurological pain, Chronic Fatigue and Lyme, and wanting to help others avoid the pitfalls.
I vowed when my daughter recovered I would share how we did it. She did get better and we do share - but every day I see the same thing: now that it is medicalised it is about diagnosis and chasing symptoms (ie perceived depression and myalgia) - NOTHING about healing or undoing the various causes. And people have given up by the time they find this blog. Health and treatments are so far from healthy today it is a wonder anyone survives, let alone really lives.
Shock treatment and removal of vital organs?
Sadly, this is the direction treatment has gone. My first cases of CFS were seen in my nursing days - the standard treatment back then was shock treatment, anti-depressants and hysterectomies for the ladies. CFS is NOT depression, nor is it a female issue.
In 2006, which is relatively recent, when my daughter became unwell, we spent the better part of 3 years doing the rounds of around 20 different doctors/clinics/hospitals before we realised that yes, I would have to do it alone even if it was technically illegal. That old deja vu of 'this is what I have studied and rehearsed for my entire professional career' happened yet again as it has done so many times in my career.
Medical treatment in this instance involved anti-depressants, addictive analgesics and threat of admission into the mental health system which we refused. My daughter wasn't depressed; she was just sick of being unwell. If, in frustration, she burst into tears, she was once again reminded that yes, she has depression.
I wonder dear doctor, if you had burning, searing pain that drove you to despair, enlarged abdominal organs that left you unable to eat or even breathe properly, would you feel 'happy' enough to impress anyone ignorant enough to keep asking the same questions?
If the neurological pain that made you feel as if your skull had acid poured over it, and a deficit of energy that left you dependent on others to be able to walk or even go to the toilet - through all this, to be told there is nothing wrong with you, that it is all in your mind, and you need addictive drugs to make you feel happy again and only then would all your problems go away - would you be 'happy' and bounce around just enough to impress yourself - or would you also cry?
Or perhaps you would feel angry when well-meaning family and friends asked you each and every time you saw them, "Are you STILL sick? Don't you think it's time you got over it?"
Fun was made of our high raw, organic, plant based diet, and we were told a number of times that as I do not vaccinate my children, this is surely what caused it (so now, NOT having poison injected into your system magically creates disease?) In our case, my children were spared the flu vaccine link (one of many vaccines linked to auto immune diseases and myalgia) however they had been exposed to a number of chemicals by default despite our organic lifestyle. Vaccine injury had also happened amongst myself and siblings and our children bore the brunt of DNA damage (cancer and auto immune disorders).
One doctor actually Googled CFS/ME in front of us, as he had never treated it.
That particular doctor sent her home in a wheelchair with the words, "Prepare for the worst. If she stops breathing again tonight, please bring her back. But she may not last the night. If she does, take her to your doctor as we do not have the ability to treat her." So we had a teen who may or may not last the night - but as they had not dealt with it, go home. It was a long night - especially as earlier that day, we had stood in the local welfare office trying to at least recoup some of the money we'd lost (I could no longer work as she needed constant care, but did not qualify for a carer's allowance and she had not been able to work for some time) - she collapsed on the floor and lay there crying and shaking. People - many who looked like actual drug addicts openly laughed at her while stepping over her in exaggeration - and a few less than decent comments were made to her about drugs.
I stood there crying for her, and that was when I vowed to share any answers I found, once I found them! Apologies to those who still find it difficult, and who still have no support because the illness is not popular enough to garner sympathy, funding or attention. Hopefully the list below will help make it more clear.
The effort to make one doctor's visit can have repercussions for days
The truth is, if you had cancer or any visible widely promoted/funded/supported illness, you would have some form of support and understanding. How long does it take you to recover after each visit to a doctor or other practitioner? My daughter usually took an average of 3 completely bed-ridden days, during which time she didn't eat, couldn't have the light on, and shook with pain.
I want to help you avoid this. One thing that may help is knowing how much it takes to even make and keep an appointment and the days of recovery following; you are able to avoid that stress, while ordering what you need to get better, from the comfort of your own home. Hopefully your support network can do the groceries and take care of other needs. It would be nice to have a dedicated service in each city but I guess that will only come with more awareness and honesty in treatment. Sadly for now I don't see things changing - I have lobbied our government and health systems as many peers have done in other nations and so far, there is no interest. Many of these networks include sufferers or at least former sufferers without outside support.
The great thing to know is that I have had many patients I have never met, across the world, who don't even have a good support network or have limitless cash - who have been able to return to health, after previously using their life savings and many years in the system without any success. Almost every day I am contacted by someone else thanking me for the protocol.
So what is CFS, really?
As a syndrome is a mix of symptoms that do not fit disease paradigms, so too with CFS - it is a set of seemingly unrelated symptoms - meaning medicine has not yet come up with a specific disease cause - or related patents. In truth, there is no one cause.
Known triggers/causes, all of which I have witnessed and treated -
insect bites/stings (Ross River, Lyme, etc)
vaccinosis or other medication side effects
surgery and titanium type allergies (which, interestingly, is not recognised in medicine and like many natural forms of assessment and treatment, one must go outside of medicine to find answers, at their own expense)
hormonal damage (adrenals, thyroid, pituitary, ovarian, gonads, etc)
allergies triggered by parental toxicity or environmental damage - including heavy metal
parasitic infestations or mould toxicity/allergy
major deficiencies and injuries - it can be a mix of two or more
Epstein Barr virus or the flu
If you do not yet have a diagnosis, please stop and take stock.
This latent need to get a diagnosis and validation does nothing but tell you what you already knew - it wont offer a magic cure.
And it should not be necessary for you to go through the long, drawn out process (often unsuccessful) of trying to get one within the medical system.
The stages of recognising and treating most auto immune illness
Stage one - understanding invisible disease. It is no one issue, no magic pill is going to 'fix' it. It is a toxic attack that has taken some time and/or trauma to develop, affecting your nervous system and vital organs - and in turn, every aspect of your health. Usually misdiagnosed for years, much time has passed, allowing symptoms to develop unnecessarily.Have you been exposed to pharmaceutical or environmental/industrial toxins/chemicals?
Perhaps your decline began after a vaccine, medication or treatment?
Stage two - starting on the correct detox (including heavy metal), diet and lifestyle is as vital as is the correct supplementation. There are many, many simple tips, such as the common herb ginger to help with abdominal inflammation and pain, as well as hormone imbalance. You need your support network to also identify with your illness, as most people fail to understand completely unless they know how it feels, or what it is.
Do you notice that after certain foods or exposures, you feel worse?
Could you be also struggling with pyroluria? This could explain heavy metal toxicity, adrenal issues, and so much nore,
Stage three - There are so many diets out there, including for invisible disease, that it makes your head spin. And it often makes you sick eventually, if not immediately. Invisible disease is about inflammation. Think about it - acid causes swelling and inflammation and is linked to ALL pain and illness. So what causes illness? Primarily what we put into our bodies but also what we put onto our bodies, our thought processes and stress. So how do you take your body from an acidic mess full of inflammation and pain, to a pH neutral, calm, pain free HEALTHY, living individual?
There is no alkaline pill, no magic vaccine that is going to change things if you make no other changes. If you live acidic, you live with inflammation. Most newcomers argue with this, yet eventually they get it. So how do you trust what is the correct diet, and how do you learn how to pull it all into one cohesive program?
Do you have inflammation from a low pH? Have you even TESTED your pH?
Stage four - the correct medicines - while I agree with analgesia if it means relief and sleep, I do not see it as an effective treatment ideal - many are addictive and come with a host of side effects, even death. But in the short term or occasionally, yes, please take them. After trialing thousands of dollars' worth of what I would term excellent supplements (including practitioner only and some of the most expensive and well researched options) I began reading up on certain biochemical research. Pharmaceuticals do not deal with the foundations or molecular health or dis-ease symptoms.
Do you know over 90% of people have some form of deficiency that there is no medical test for?
Stage five - this wraps up all the adjuvant tips and ideas that have many benefits and even increase the effectiveness of the steps above.
Gluten sensitivity or RoundUp toxicity
Mould toxicity and sensitivity is possibly a factor in ALL cases of auto immune dis-ease
Hormone imbalance is a major factor in invisible disease - including lupus, ALS, MS, MD and much more. And it is one of the most mismanaged health sectors.
What about the ongoing arguments that natural therapies don't work? This has been an ongoing very clever spin exercise, with little truth, other than fear and money - why do so many accept a death sentence without even trying?
What about pain relief? Why are so many auto immune disease sufferers now registered drug addicts?
What about scams? How do you know the protocol is safe or effective?
Feel free to print off this information and share with anyone you know who may need it.
The general rule of thumb is for every year you have been sick, it will take a month to reverse but this can be dependent on many varying factors.
Be patient and just know you are doing the right thing - some of our best suggestions:
7. Mould detox
10. Pyrrole relief