My Tailor Made Management Protocol
Finally! Here's the low down on my treatment protocol.
Growing up, I was always encouraged to try natural remedies first before taking the stronger, pharmaceutical options. Flu was always chased away with a potent concoction of turmeric, ginger, a touch of black pepper, lemon, honey and hot water. It was only when the illnesses became too overwhelming for the body to handle naturally, or when we chickened out because we felt so terrible, that we took antibiotics or other strong meds. With me being so sickly, I ended up having to take plenty of antibiotics to get me better. In the last few years I decided to give my body more of a chance to fight the infections, so I embraced the more natural treatment in combination with less potent medications. My typical flu remedy nowadays is the turmeric concoction mentioned above, as well as a mix of Corenza C, Linctagon and ACC 200. I still suffer from plenty of illnesses, but I allow my body to fight them, without taking antibiotics.
There is something about the use of chemotherapeutic drugs that just doesn't sit right with me. Please don't misunderstand me, I believe that there is a time and place for them and that in the correct situation they can work exceptionally well and save lives, but for me personally, with regards to my disease, they were the last thing I wanted to have to use.
When I was diagnosed, I was told that the only way to manage my condition was to start methotrexate and steroids immediately, two medications that have the most side effects and a very intense effect on the body and the immune system. These would be combined with a list of other medications - purback, folate, bactrim, chloroquine. Having been so sickly, I knew that I actually couldn't bare to have my immune system suppressed by these medications and have to face being more susceptible to infections and therefore being even more sickly. Working in a hospital environment with all of the nasty and dangerous bugs made the reality of having to take these medications an even harder pill to swallow.
I knew I needed to find a better treatment plan, one that I was comfortable with and that wouldn't potentially affect my life and career to such a negative degree. There was only one name that came to mind, someone who I respect and trust deeply, a phenomenal Integrative Doctor who practices in Cape Town - Dr James Laporta. Dr Laporta and my boyfriend are friends, and it was as a result of this friendship that I had I managed to spend some time shadowing him at his practice in Cape Town over the past few years and I was able to experience the incredible work that he does. He practices in both Eastern and Western medicine and has an insatiable passion for alternative treatments. I knew he was the perfect doctor to have on my team.
The first Skype consultation we had we discussed some lifestyle changes I needed to make and some supplements I could start taking before I was able to see him in person. First and foremost were necessary dietary changes. To say I was set in my ways and exceptionally stubborn in my eating plans is an understatement; I absolutely adore carbohydrates, baked goods and cheese, I actually basically lived off them as they were a part of every meal. But, alas, I was told that I needed to start a diet that eliminated all anti-inflammatory food groups, and not only that, the food all had to be organic, grassfed and pasture reared. James told me to do some research on the topic and come up with a general list of foods I had to cut out. Through Pinterest, I managed to find the ‘Autoimmune Paleo diet’, which seemed to be the most comprehensive and well explained elimination diet. The list is extensive so I've attached the example I followed.
The idea behind cutting out all pro-inflammatory foods relates to the connection between leaky gut syndrome, gut health and autoimmune diseases. This is a massive topic and something I will cover in more detail soon. But the short version is that inflammatory foods cause the cells in the gut to swell up, which disrupts the connection between the cells causing them to become loose. As the cells are no longer well adhered to each other, the inflammatory food particles are able to pass through the gaps and into the blood, where they trigger a large immune reaction and cause a state of chronic inflammation.
There is no easing into the diet, it's cold turkey, 100% commitment immediately. I had to to pick a day and then go with it. I found the first 3 weeks excruciatingly difficult! To be completely honest I absolutely hated it and was on the verge of surrendering to what seemed at the time to be the easier path of chemotherapeutic drugs and steroids. However, I persevered and pushed through the really difficult times and I am beyond happy that I did. I'll write a detailed post on the diet and have a section for recipes too.
Next on the list was the medication. James had a few medications he wanted to try but I had to have a consultation with him in Cape Town before he could start me on those. In the interim, I started taking Curcumin, Chlorella (broken cell wall), CBD oil (non THC containing), MSM powder and probiotics (in the form of Kombucha).
Curcumin is the active ingredient found in Tumeric, it has phenomenal healing powers. Curcumin is a potent anti-inflammatory, recently being noted to be as effective as anti-inflammatory drugs without the rotten side effects. Curcumin acts as an antioxidant directly, as well as boosting the body's natural antioxidant enzymes, allowing the body to repair and prevent damage and aging. Studies have shown that Curcumin is able to kill cancer cells, reduce the development of new blood vessels into the cancerous area (angiogenesis) and prevent the development of cancer cells, as well as inhibiting their spread (metastasis). Curcumin is known to reduce the pain and inflammation associated with arthritis, sometimes proving to be more effective than most pharmaceuticals. Curcumin also has an incredible effect on the brain. It is able to improve brain function, as well as delaying or reversing disease that affect the brain by increasing a hormone called 'Brain Derived Neutrotropic factor'. This hormone is associated with Alzheimers and depression. It's a natural 'wonder drug', and I'm indescribably excited to see this magical medicine boom.
Chlorella is a single-celled green freshwater algae. It has a hard cell wall which makes it impossible for humans to digest, which is why you have to ensure you take the broken cell wall Chlorella. It is a super food, containing a host of vitamins, minerals, omega 3s, antioxidants, fiber and protein. It is known to enhance the immune system and increase the body's fighting ability. It has great benefits in the blood - it helps control blood sugar levels, cholesterol and can normalise blood pressure. It is also a potent antioxidant and has the ability to bind to and remove heavy metals from the body.
CBD oil is incredible, it is a non-psychoactive oil extracted from the Canabis plant that contains high levels of cannabinoids. The canabinoids act on the endocanabinoid pathway in the brain, producing a long list of health benefits. It has potent anti-inflammatory properties, impressive pain relief, protects and preserves the brain from damage and diseases, reduces anxiety and depression, aids in reducing the symptoms associated with cancer, may help reduce blood pressure and effects of heart disease and it may even help prevent acne.
With the dietary changes came even more lifestyle changes. At this point I also started changing most of my body care products. I bought earth friendly body cream, face wash, toner and moisturiser, natural deodorant and natural toothpaste. I stopped drinking tap water in exchange for filtered mineralised water. I also had to cut all sugary, preservative containing soft drinks. There are still changes I need to make, for example swopping out my shampoo and conditioner for natural ones, changing my make up brand and finding an effective, non toxic mosquito repellent.
As I was still working at this point I knew I would need to pay attention to my body; the stress and strain I was dealing with, my sleep habits and very importantly mindfulness. I began to listen to and feel the limits of my body, learning not to push myself too far when possible and to truly rest and recover from the long working hours. Sleep is an essential part of recovery. When we sleep, our bodies are able to heal and regenerate. A lack of sleep has been linked to a frightening list of health complications. Working insane hours and 30 hour shifts obviously made this difficult, but I began to prioritise my sleep. (Mathew Walker and Rhonda ref)
An invaluable part of my protocol is my mindfulness practice. I set time aside every day to spend a minimum of 10 minutes for meditation and intention setting. I know most people find this difficult, some even think it's a bunch of nonsense, but I can assure you it helped me in more ways than I can express. I downloaded an app called Insight Timer, which is an excellent meditation app that has thousands of meditations, including guided meditations, which seemed to work for me. I truly feel that this dedicated time allowed me to get my head in the right space and ready to take on whatever tasks I had to overcome in order to get better. I think there is a general perception amongst the public , and even more so amongst medical professionals, that mindfulness , meditation , yoga and stress management practices like biofeedback are little bit 'woo woo', and lack credibility as real treatments , especially whe patients have serious active disease , but there is a wealth of new research on these therapies that demonstrate that they can have a profound effect on the biomarkers of inflammatory and autoimmune diseases - for example , reducing serum levels of inflammatory cytokines, interleukins , homocysteine and cortisol. For me, it seemed obvious that any treatment protocol which didn't incorporate atvkesst sooner these interventions would be incomplete at best.
During my consultation with James in Cape Town he introduced me to a pharmaceutical company named Panaxea. This company's main focus is on high potency phytochemical extracts. Generally speaking, phytochemical research is given more mainstream credibility in Asia. As a result, there is a vast amount of interesting research on high potency extracts coming out of Asia. For example, intravenous Artemisia and Curcumin, which are making a serious mark in the Western medical world. There are numerous studies supporting phytochemical use in many of the well know diseases. These are medications that are packed with tons of benefits and have minimal side effects.
After an exceptionally thorough 3 hour consultation, including my medical history, physical examination and some psychology related treatments, James had decided on a tailor-made medical protocol for me. The medications he had chosen for me where Autoimmune 1 (A1), Cruciferous Extract, Magnol One and Affect D, these are all panaxea products and are composed of high potency phytochemicals. He also wanted me to start low dose steroids (Prednisone 5mg), as well as DHEA supplementation (the precursor for testosterone), because my DHEA level was very low owing to the burnout I was suffering from. My adrenal glands were so fried that they weren't producing adequate levels of hormones.
I started on these medications, excluding the DHEA, that day as well as continuing the supplements I was already taking and continuing with the lifestyle changes. However, despite being on the meds, I was still feeling really drained and awful, most likely because I was still working. It all became a bit overwhelming and I realised I needed time to slow down, recover, adapt to this new life and treatment, and fully commit myself to healing, so I took 4 months of ‘Temporary Incapacity’ leave to give myself the time I needed.
As the leave period started, my boyfriend and I began to research new data on Vasculitis and Rheumatology in general. We came across a book titled, 'Integrated Rheumatology' by Randy Horwitz, PHD and Daniel Muller, PHD. This book explained the essential need for omega 3s and their effect on inflammation reduction. This was an incredible learning curve in term of the subsets of Omegas and how they play a role in reducing inflammation. It's a well know fact that Omegas are very important, and it's often thought that all plant oils are potent anti-inflammatory substances. However, this book explains how flaxseed oil, for example, can trigger inflammation. It also explains the vital role salmon and other fish oils have in reducing inflammation.
Proanthocyanidin is a potent antioxidant, anti-inflammatory and immuno-modulatory. There is incredible research on this magical flavonoid. It comes from grape seeds, grape skins, cranberries, black currants, green and black tea, to name a few. Research shows that it has roles in reducing the risk of skin cancer, it strengthens capillaries, prevents blood vessel damage, a role in reducing diabetic retinopathy and is a major anti-inflammatory agent. I immediately added this to my protocol.
Devil's claw is a plant that originates in South Africa. It is a natural anti-inflammatory used in osteoarthritis and for other joint pains, rheumatoid arthritis (early clinical trials) and gout. It has also been shown to have antioxidant properties as well. This is another plant based supplement I added to my protocol.
Something I try to encourage people to understand is that most of the medications used today have originated from a natural source and then been chemically synthesized for mass production. If you trust yourself and you listen closely to your body, as well as keeping your team of doctors on board and close by, you may realise that you have a little bit of time to try an 'Alternative' treatment plan before being started on the mainstream medications. I knew that the mainstream route was not for me, it just didn't resonate with me and I knew that these potent but natural medications could hold the answers. I took a complete gamble, to be honest, and it paid off. Please remember that all of the substances that I have mentioned need to be viewed as medicines, despite being natural they are potent and do have risks and side effects like any other medications.
It certainly wasn't the easier route, it's a complete shock to the system to have to turn your life completely upside down in the shortest time frame imaginable. There were many moments when I felt I actually couldn't carry on with the changes. Your diet really has a strong influence on your psychology (mental health) and make you feel so down that you consider quitting and going for the mainstream options. I genuinely had moments when I held the script in my hand, ready to get the Methotrexate, Purback, Chloroquine, etc. It's completely normal to feel overwhelmed by the changes, to want to opt for the easier option that has far less impact on you, but if you are committed to healing yourself in the best way possible for you, it's easy to remind yourself why you've chosen that path and why it's so important for you to continue on with it.
There is a time and a place for everything, I truly believe that. I gave myself a 3 month time period when I started my protocol, if there was no improvement or my disease progressed in any way, I would start the immunosuppressive treatment that I was trying to avoid. I was overly committed to ensuring this protocol worked, I was exceptionally strict with myself and ensured I followed my protocol to a tee. It took a few weeks but I got used to the diet, finding creative ways to make the food delicious, the pill burden became easier to swallow, I started loving my mindfulness routine and the light yoga I had started, and I truly believed I could do it and that the protocol would work. Most importantly my incredible family, friends, boyfriend and doctors supported me every step of the way.
It's difficult to write all of this in one post, so I will be adding hyperlinks and other posts to further explain the natural medications I used, in a bit more detail for those who are interested.
Please understand that you have the ability to help yourself heal, the choices you make will determine how your body functions. I am not saying one treatment plan is better than the other, and I think it's necessary to emphasise the importance of the mainstream treatments and state that they are effective and are known to produce excellent results. The most important thing to take from this is that, you need listen to your body and support it while you’re battling an illness of any kind. Providing your body with nutritious, healthy, hearty food, supplementing the areas that are taking strain and giving yourself the self care and respect you need during this time, your body will be able to fight harder, for longer and most importantly it will fight more effectively, allowing you to feel stronger and happier.
There's an extensive amount of information in this post and it can seem overwhelming, so if you have any questions, please don't hesitate to ask me.
I hope this gives some of you hope that it is possible to heal yourself in the way that you believe is best for you and your body.
Have a fantastic weekend everyone!
Sending Love, Cayla