It is January 2017, I had hoped I was done with sharing any updates or adding to this Chronic Lyme Disease series, but here goes…
My joints started aching when the weather turned colder this past fall (October 2016). Back in June, 2016 my Lyme Literate Medical Doctor said the Chronic Lyme Disease was in remission; however, with the new symptoms he ordered several unique blood tests.
First, the Comprehensive Food Panel came back showing that many of the foods that I was eating daily are not presently good for me and are causing an immune response and inflammation. Upon receiving those results, I immediately eliminated those foods – all my favorite things (as I wrote that I heard Julie Andrews singing in my head). Farewell for now all the foods that made me happy including, sweet potatoes, almond milk, almond butter, almonds, bananas, pepper, cinnamon and ginger. Good-bye Chai tea!! Whaaaa!
The good news is that after a week without all those foods, I noticed less inflammation in my joints. You would think that would mean the scale would show less poundage, but unfortunately it has not. Bummer!
Second, it appears the Epstein-Barr Virus (EBV) is active even though I don’t have the typical symptoms. EBV often accompanies Lyme Disease. In my mid-twenties, I had a serious case of mononucleosis. My liver and spleen were compromised, the blood tests showed extremely high white blood cell count and my doctor at the time thought I had a rare form of cancer, but didn’t share that with me until a year later. Viruses never really leave the body, they just become dormant. EBV is now rearing its ugly little head and causing problems for me as I try to heal from Lyme Disease. Ugh!
Third, my Nagalase (scroll down for more information) levels are quite high which can be an indication of future issues.
Based on this information, my Lyme Literate Medical Doctor has encouraged me to start GcMAF injections (scroll down for more information) to boost my immune system and reduce the Nagalase. The cost is $6000 for 3 months of treatment. Say a prayer it works in just three months so I don’t have to repeat it.
It is extremely frustrating to have done so much and be so vigilant about my health and still have more work ahead to regain vibrant health.
Lyme disease treatments, other than short term antibiotics, are not covered by insurance. So far, I have spent out of pocket upwards of $10,000 on treatments and doctors’ visits. Lyme has been very taxing on my finances which in turn has significantly increased my stress levels. For over 25 years, I have taught my clients and students how stress instantly can negatively impact the body. To reduce stress, I am doing yoga, energy medicine exercises, Emotional Freedom Technique (tapping) and whatever I can to reduce stress in other areas of my life.
With all that I’ve said, I don’t want you to think I’m on my death bed, but I could be much better and my goal is to regain vibrant health. I plan to live a long and healthy life (my Dad lived to be 104) so this is something I must do, it is not an option if I want to be healthy in my later years.
As much I wish it wasn’t, the Chronic Lyme healing journey continues.
For those interested in learning more about GcMAF and/or Nagalase, I have copied the following from my physician’s website:
WHAT IS GcMAF?
GcMAF is a phrase coined by Dr. Yamamoto, the professor who discovered the macrophage activating potential of a specific protein in the 1990s. It is an acronym for ‘group component-specific macrophage activating factor’ and highlights the fact that, at that time, its main function was considered to be the activation of macrophages.
Macrophages are immune cells. Their role is to identify and destroy pathogens and invaders. Once they have done so, they advise other immune cells of the threat by passing out small pieces of the destroyed pathogen – this gives precise details of what to look out for. In science terms, this process is called antigen presenting and it lets T cells, B cells and Natural Killer cells know exactly what to destroy. This becomes the innate, or learned, immunity.
So, immunity starts with the macrophages. The immune response starts with the macrophages. The pathogen destruction starts with the macrophages. The word ‘Macrophage’ comes from the Greek term for ‘Big Eater’ and an active macrophage can consume up to 15 times more than an inactive macrophage.
Just as a nation does not have its army on high alert all the time, guns blazing and rockets firing, so the immune system does not stay on high alert all the time. A lot of the time, the macrophages are in the immune system equivalent as being on a tea break. They consume only enough to exist. Only when the signal comes to be on ‘high alert’ does the macrophage become active, and at that point it will consume any and all pathogens that it recognizes as a threat, or ‘not-self’.
This signal to become active is by way of a modified protein, specifically the GcProtein. There are other macrophage activation routes, such as LPS macrophage activation in the gut, but GcMAF remains the most potent activator of macrophages known. GcProtein goes by other names, Vitamin D binding protein and D-binding protein. The GcProtein is made in the liver and is a common protein throughout all mammals, in the blood and fluids. It has many functions, vitamin D transport, bone development, binding of fatty acids, removal of cellular debris, in fact it is very under-studied and there are many amino acids within this protein for which no scientifically proven function has yet been attributed.
Three amino acids in this protein, which is approximately 458 amino acids in length, are attributed to macrophage activation. The common GcProtein, when it encounters three enzymes released by cell death during inflammation, becomes changed at these amino acids. The shape changes, like when you put two Vs together, you get a W. A slight change and it becomes something completely different, and in molecular science, it is very much like a lock and key. If the key doesn’t fit, the molecule doesn’t work.
So, the GcProtein encounters the inflammation produced enzymes and it becomes an ‘inflammation primed GcProtein’ also known as GcMAF.
GcMAF becomes the signal to the macrophages that there is some inflammation somewhere. The macrophage then steps up into high alert and goes hunting.
WHAT’S THE CONNECTION WITH NAGALASE?
Nagalase is present in the body in low quantities. High levels of nagalase are present in immune suppressed people, with chronic illness and cancers. Levels of nagalase in the blood can serve as a diagnostic a long time before cancers are detected on regular tests.
Nagalase is enzyme, excreted from the protein coats of pathogens and cancers. This enzyme has the purpose of destroying the gcprotein at the point at which the signal to the macrophages is made, with the sole purpose of reducing the immune response.
Nagalase stops GcProtein from converting to GcMAF, so the macrophages never get the signal to attack. This means more pathogens, more nagalase, less GcMAF and more immune suppression.
Restoring the GcMAF levels encourages macrophages to hunt down and destroy pathogens, this in turn reduces the amount of nagalase present (as less is excreted from their fewer numbers) and in turn this allows for more naturally occurring GcMAF to be available.
WHAT DOES GcMAF DO?
In addition to the well-documented macrophage activation and immune stimulation of GcMAF, this protein has also been shown, in science papers, to help in:
Cancer – the prevention of metastatic cancers (secondaries)
Cancer – the prevention of the formation of blood supply to tumors (anti-angiogenesis)
Cancer – prevention of migration of cancer cells
Cancer – the destruction of the tumor by activated macrophages both the outside and the tumor cells compartment of a cancer.
Skin cancer – using GcMAF alongside photodynamic therapy (PDT) gave a 100% success rate (in mice studies)
Cancer, non-specific – proven to work regardless of cancer tissue origin
Cancer, prevention – small amounts of GcMAF prevent administered tumors (in mice) from becoming cancers. This group survived as well as the unadministered control group.
Clearing of cellular debris (actin scavenging) after injury
It deactivates macrophages when no longer needed (immune mediator)
Stimulates antibody generation
The above are science papers, undertaken in laboratories under proper test conditions. Feedback from users of GcMAF also report benefits in the following conditions, although these have no published science papers. These simply give an indication of what a working immune system may be able to achieve:
Chronic fatigue syndrome
Myalgic encephalomyelitis (ME)
OCD (obsessive compulsive disorder)
HPV (human papilloma virus)
EBV (Epstein Barr Virus, also give rise to mono or mononucleosis)
Type 1 diabetes (EBV induced)
Eye, ear and throat infections
The following references are about the transdermal cream.
Aches and pains
Bartonella associated stretch marks
Tumors on dogs and horses
HFM (hand, foot, mouth)
Polyarteritis nodosa cutical
Sleep – more energy, sleeping better and improvements in sleep apnea
Spots, boils, burns, flaky skin, rashes, moles, other skin conditions. Improvement in skin condition overall
Temporomandibular joint disorder
Tumours (pain from)
Verrucas and warts
Transdermal – MAFActive – suppliers of transdermal cream. They make no health claims and publish no science or testimonials in order to comply with the very strict rules regarding the marketing of natural products. Those who know about the product use it and it is especially popular in the Lyme and autism communities, where its low concentration is the most effective form for these co-infection type ailments.
Injection – Saisei Mirai- Injectable GcMAF, made in Japan, this group run clinics for cancer patients and makes and sells high strength GcMAF in serum for mail order. GcMAF.eu sell an injectable product which is a combination of GcMAF and oleic acid called goleic.
Yogurt – Bravo probiotic – while strictly not a GcMAF, as any gcprotein will be destroyed by the boiling of the milk, it has GcMAF-like properties. This is likely to be via the probiotics working within the gut microbiome that creates lipopolysaccharides (lps), and this creates lps macrophage activation. Because the two are complimentary, both Bravo yogurt and GcMAF can be taken at the same time. They have two different actions in the body.
Be cautious of products labelled as ‘GcMAF’ – this term has been used by some companies to enable their inferior products to be sold at an inflated price. A GcMAF product will have the effect of improving and mediating the immune response, some of the products out there do not do so. The products listed above are often discussed as effective on social media so can be relied on as being effective.