Hello,
As I sit here writing the post, I myself, am still in disbelief with what I'm about to share with you. My plan for the blog was to write about my treatment plan and life changes I have made after being diagnosed. It most certainly is not the conventional protocol and is far from what closed minded, strictly scientific doctors would suggest. I wanted to explain the process of the treatment plan I follow and to give some vital advice. Don't get me wrong, these posts are still coming and will be detailed and hopefully helpful, but they’ll have to be backdated.
Last week I had my follow up appointment with my rheumatologist; I had to repeat my bloods and have a full general examination. I was obviously extremely nervous for this follow up and was hoping with all my heart that the results would be positive and that there would be some level of improvement in my disease markers.
According to the new guidelines released in January 2019 for ANCA Associated Vasculitis; my Prof (the very best Rheumatologist) has finally diagnosed me with Granulomatosis with Polyangiitis (GPA), previously known as Wegner's Granulomatosis.
In order to fully understand this post, I'm going to explain some of my disease markers, what they mean and how the have changed.
Firstly, as explained in my previous post (C-ANCA Vascul-what?), C-ANCA is the main marker that is identified in GPA and it is raised when these antibodies are circulating in the blood - indicating active disease. With regards to Vasculitis, and most AI diseases, markers of inflammation are positive when the disease is active. In most cases, C-Reactive Protein (CRP) and End Sedimentation Rate (ESR) are the inflammatory markers that are raised and are therefore tested. This, however, was not the case with my blood results. My ESR and CRP remained completely normal, except for during the pancreatitis episode when my CRP was raised. However, from October 2018 to March 2019, both have remained flat. Luckily, I have an incredible Integrative Doctor working with me and along with many other blood tests, he requested an interleuken-6 (IL-6) level. My IL-6 was sky high, indicating exceptional levels of inflammation.
IL-6 is a pleiotropic substance that is secreted by immune cells, this means it produces multiple effects from a single gene. IL-6 works as a pro-inflammatory cytokine, i.e. it induces inflammation through a cascade of the activation and release of pro-inflammatory chemicals. It also plays a role in the production and balance of blood cells, as well as having a major influence on the immune response. It has been shown that in AI diseases, IL-6 greatly influences the differentiation of CD4+ cells. CD4+ cells are immune cell that contains the protein/receptor CD4, such as T-lymphocytes, monocytes and macrophages. These cells are often referred to as "helper cells" because when they are activated in response to infections/threats, they release chemicals that trigger the "killer cells" or cytotoxic T cells to attack and kill the threats through antibody production. (1) When high levels of IL-6 are circulating, CD4+ cells are encouraged to differentiate into Th17 cells. Th17 cells produce IL-17, a potent inflammatory cytokine involved in many AI disease, including; rheumatoid arthritis, psoriasis, Irritable Bowel Syndrome, Multiple Sclerosis and Asthma. (2)
Not only does IL-6 convert helper T cells into Th17 producing cells, it also reduces the differentiation of T helper cells into T regulatory cells (Tregs). Tregs are another type of T lymphocytes that function to ensure that the immune system is modulated and that there is tolerance to self-antigens, therefore preventing the immune system from recognising self cells as threats and inhibiting the developement of Autoimmune Diseases. (1)
It's a lot to wrap your head around but to summarise; with a rise in IL-6, there is a conversion of helper cells into potent pro-inflammatory Th17 cells and a large reduction in Tregs cells, and as a result, the body is in a state of inflammation and the immune system begins to attack self cells without any regulation. Below is a diagram showing the vast action that IL-6 has on many different tissues within the body.
Back to the actual reason for this post. The first IL-6 level I had done was in December 2018, about 3 weeks after starting a special organic AI diet, and it was 356. Bearing in mind that a normal level is less than 7, my integrative specialist was astounded and said it was one of the highest levels he's ever seen. At this point, my C-ANCA levels were still high and therefore positive. This meant that the disease was active and creating extensive inflammation. I felt horrendous during this time. My fatigue was indescribable, my memory and concentration were rapidly deteriorating, random pains were common, fevers and night sweats continuously occurred; to put it lightly, I was a mess. My integrative doctor started me on a handful of Eastern Medicines and supplements and suggested I take some time off work to recover. Going against his advice, partly because I was being stubborn but mostly because taking time off would completely interfere with my career plan, I continued working.
As a side note, I need to inform you that despite being bullied by my first Rheumatologist into starting Methotrexate and a host of other potent medications, I went against her medical opinion and decided to find a treatment that resonated with me. This will be explained further in another post, but all I can say is thank the universe for finding supportive doctors, my family and an exceptionally dedicated boyfriend who helped me with this.
With devoted adherence to my new treatment plan, plus the addition of some steroids and other self chosen supplements, dedicated time to meditation and an extremely strict diet, I managed to get myself into the new year. At this point my body was taking a huge toll because I was still working grueling and stressful hours, without any time to actually process what had happened and how the diagnosis had affected me. Half way through January there was nothing left in me to keep pushing. I had completely burnt out, and my bloods were reflecting this - my adrenals were so burnt out that they were no longer producing DHEA, a testosterone precursor, a marker for burnout. At this point I decided it was time to stop working for a bit and to devote time to getting myself better. Despite feeling worse than ever, the repeat IL-6 level done at the end of January revealed the treatment plan was working. The level had come back as 33, a tenfold decrease in 1 month!!! I was fighting the disease well, however, my body had taken a massive knock from the stress and being pushed to the limit, so the burnout was still rife.
Fast forward through my admission to hospital and operation in February, with further supporting evidence of the disease; low complement levels (proteins that have a role in the immune system - often decreased in vasculitis and lupus as they are consumed by the autoimmune related inflammation), as well as the discovery of excessively enlarged lymphoid tissue in my throat (discussed in the previous post). The admission and operation on my throat and the recovery period wiped out the whole of February and some of March. I spent that time recovering, continuing my treatment plan and AI diet and committed loads of time to mindfulness.
Now that we’re caught up, I can finally share with you the miraculous news! I have managed to get myself into REMISSION. Correct, I AM IN REMISSION!!! This is something my Rheumatologist has never seen, some say it’s a miracle but I know it’s all due to the exceptional commitment I had to getting better, combined with unbelievably cherished support from family, friends and my doctors, as well as the treatment plan I initiated. Making myself a guinea pig, going against science and doctors’ opinions, I managed to conquer my disease without any chemotherapeutic agents, mostly completely naturally.
So what I’m trying to say is that it is possible to listen to your body, understand what it is that may be triggering your disease/ailments and try and restore it from the bottom up. It is in no way the easier option, it is challenging and frightening and there will be many times you’ll want to give up. But I can now say, with certainty, that it is possible! I cannot even begin to express how exciting yet rare this is. And I am beyond ecstatic to be able to share with you my journey, though it was not easy, it was completely worth it.
Don’t lose hope in the fight, there is a light at the end of the tunnel - you just have to believe in it.
I’ll be posting my treatment protocol and life changes soon, so if you’re interested in a holistic and integrative approach to autoimmune diseases, keep following my blog! :)
Have the most amazing weekend, I know I will!
Sending Love,
Cayla
References:
1. Tanaka, T., Narazaki, M., & Kishimoto, T. (2014). IL-6 in Inflammation, Immunity, and Disease. Cold Spring Harb Perspect Biology, 6(10). http://doi.org/10.1101/cshperspect.a016295 .
2. Tesmer, L. A., Lundy, S. K., Sarkar, S., & Fox, D. A. (2008). Th17 cells in human disease. Th17 Cells in Human Disease, 223, 87–113. http://doi.org/10.1111/j.1600-065X.2008.00628.x .