Word on the street is that there’s a new drug in town.
So I sat back in the shadows and watched everyone else take it. Things were looking good, people with whom I was familiar with from the many years of online forum participation for my health problems, were getting better.
The catch was that these people were using Disulfiram to treat Lyme Disease, and although I am diagnosed with Lyme (Borrelia Burgdorferi), my most debilitating health problems are the symptoms of Morgellons Disease.
What the Hell is Morgellons Disease?
Morgellons Disease is controversial, as the media has and still does, portray it as a delusional illness. Not only that but it’s symptoms are so bizarre that it makes most people’s skin crawl just hearing about it, nobody wants to associate with an illness that makes its sufferers sound insane, not least because it in turn is associated with a parasitic infestation. That is unless you believe it’s delusional then it’s associated with mental illness, either way, nobody likes to talk about it. Not even Lyme Disease sufferers want to talk about it, mention it on one of the many forums, and I am met with silence. The silence that I am very familiar with.
Despite it’s controversy, it has been studied quite extensively in recent years, not as a delusional illness, because it is not, but as a real pathomorphological disease. Many of the studies link MD to LD – the Charles E Holman Foundation spearheads the research in the US, and lists several peer reviewed reports on it’s website: https://thecehf.org. Many of these scientific peer reviewed papers show associations between LD and MD, the Lyme bacteria has been found in many of the MD lesions and samples studied. The cause of this association has not been established but it may be that one is a co-infection of the other, and both are insect vectored – meaning they are both transmitted by, most likely, ticks.
In this research article Marianne J Middelveen, Cheryl Bandoski, Jennie Burke, Eva Sapi, Katherine R Filush, Yean Wang, Agustin Franco, Peter J Mayne & Raphael B Stricker published in BMC Dermatology describe Morgellons Disease:
‘Morgellons disease (MD) is a complex dermopathy characterized by the spontaneous appearance of slowly-healing skin lesions that contain multicolored filaments either lying under, embedded in, or projecting from skin (Figure 1A-C). Patients may also exhibit constitutional, musculoskeletal and neurocognitive symptoms that are associated with Lyme disease (LD) and tickborne coinfections. The presence of these symptoms suggests an infectious etiology of the dermopathy and possible vectoring by ticks’
Traditionally both diseases can be treated with antibiotics and often with good results, but the problem with antibiotics aside from the long term damage to intestinal flora, is that when the treatment is stopped, the patient often relapses. The improvement is temporary, and despite even more controversy surrounding the denial of the very existence of ‘Chronic’ Lyme Disease – meaning post treatment Lyme, persist it does. In fact most people I am familiar with on the forums have been tirelessly treating Lyme for many years now, including myself. But I want to talk about Disulfiram and Morgellons.
I was anxious about starting it because I am familiar with the phenomenon of a Herxiemer reaction, in a nutshell, treating LD and MD makes you feel much much worse at first – you get worse before you get better. For me this experience has been at times very traumatising and I associate it with what is described by people who have had the experience of coming off heroin.
A Herxheimer is a multi systemic reaction but largely caused by an immune response which causes a Cytokine ‘storm’ – this Cytokine ‘storm’ has been associated recently with what can cause the very dangerous downhill inflammatory response to COVID19. But with Lyme and Co, this can be even more complex as it can involve Lyme Meningitis (swelling of the brain due to bacterial die off) and also less understood processes such as Heavy Metal redistribution, Peripheral Neuropathy, Cardiomyopathy and many other dangerous symptoms. The body can go into shock. In this article on Herxheimer reaction, Dr. Joseph Burrascano a leading Lyme Specialist, says:
“I’ve talked to patients who’ve had Herxheimer reactions and almost all of them tell me it is a very intense experience. One patient described it as an “altered state.” Said one: “Every cell in my body feels like it’s being crippled. It’s mentally overwhelming and physically exhausting. I usually have a pulsing feeling in my body which distinguishes it from a medication side effect.”
For me the experience is similar, but often worse, as the consequential Tachycardia symptoms (related to POTS), and the feeling like I cannot breathe, are an unavoidable precursor to a panic attack, This is often coupled with chest pains and is an indescribably traumatic experience, which can, understandably, result in many sufferers not wanting to medicate. Hence my hesitancy in diving into the Disulfiram ‘deal’.
On the upside, I was pleasantly surprised to see that the medication was cheap, which made a change – yes we usually have to pay a tidy sum for these harrowing experiences.
Going through a Herx alone is a daunting prospect, especially if like me, you have problems like Tachycardia and a restriction of blood flow to the brain due to coagulation and blood vessel damage. On the other hand, being around people, who despite the best intentions in the world, cannot understand what you’re going through and most likely do not have the emotional tools to support you in these difficult times, is a challenging experience and one that in the past has left me particularly traumatised. So the Herx, like I imagine most drug addicts would probably agree, I prefer to do alone. Which was fortunate as I was unbeknownst to me, I was about to go on lockdown, alone.
When dosing most Lyme and Morgellons protocols, you start slow. Not least with Disulfiram as it is renowned for its side effects, especially Peripheral Neuropathy which can be experienced in many different manifestations. Neuropathy was not something I experienced at first, until the 2nd week of quarantine. I would start to feel an overwhelming sensation of feeling cold, so cold that try as I might, I just could not warm up. I soon learned that when I felt it coming on, I had to act fast, 2 pairs of socks, a hot water bottle, duvet, blanket and heater on and I would just have to wait it out. Overwhelming fatigue would usually come hand in hand but the shivering would stop me from resting. This was a walk in the park compared to some of the Herx’s I experienced in the beginning of my road to health – I had experienced some gruesome crashes on that road at times, which I have documented in my book – The Beast Lies Within – The Secret Diary of a Morgellons Sufferer.
The initial symptoms when taking what equated to a 5th of the dose of Disulfiram, were quite typical ‘die off’ symptoms, which I was almost happy to observe, as I know from experience that these symptoms such as tinnitus, joint pain and fatigue were a sign that the medication is working.
But perhaps what singles my experience apart from those treating Lyme Disease, was that I began to experience some symptoms of Morgellons Disease that I had not done for quite some time, as I had been taking anti parasite medications for many years which prevented the typical fibres that appear on or from the skin, these I had not witnessed for perhaps a year or so.
It was subtle, but nonetheless a relevant symptom, which I was intrigued by. The most unpleasant symptom however was the intensely itchy skin I began to experience – one I remember experiencing years ago when I first began medicating with Doxycycline (from the Tetracycline family of antibiotics) for Morgellons Disease.
I use a diagnostic technology called Bioresonance, so I began scanning myself daily, especially as I ramped up the dosage (the symptoms I am describing didn’t begin until I was on 125mg per every other day, the recommended max dose to achieve is around 500mg per day). The scans began showing high levels of Microsporum Canis, on my scalp, where tiny blue fibres where coming from, and skin on feet. Microsporum Canis is a fungus, commonly known as Ringworm, often found (amongst a multitude of other pathogenic organisms) living on MD sufferers.
The most exciting observation that I have experienced with Disulfiram, is that it appears to be a biofilm buster, here’s what biofilm is:
‘Also known as extracellular polymeric substances (EPS), a slimy substance consisting largely of polysaccharides proteins, glycoproteins, and glycolipids – and, in some cases, surprising amounts of extracellular DNA (e-DNA) – biofilm is a protective matrix that houses various organisms and pathogens.’ https://waverlywellness.co.uk/biofilmaker/
Biofilm is a substance that may be seen as the fundamental structure of which Morgellons Disease originates from, and it is infecting every part of our bodies whilst protecting all the pathogens we are infected with, and there are many. Biofilm is what can clog up our blood vessels and arteries, what congests our intestines causing malabsorption and intestinal discomfort, and what can proliferate in our lungs and sinus. Biofilm makes it very hard to cure Lyme and Morgellons. Other forms of Biofilm that are involved in Morgellons Disease are known as Ropeworm and/or Mucoid Plaque. These are discussed in great detail in my book.
I had suffered for many years with a build up of this biofilm in various places in my body – intestines, sinus, ears, throat, but specifically in my legs this caused a lot of pain due to lack of blood supply to the tissue in this area – a common issue with MD. My Bioresonance machine suggests high levels of ‘seromucoids’ in the blood vessels in that area, and also atherosclerosis.
Within a few weeks of taking Disulfiram this calf pain had gone, but the biofilm was draining into my gut like a river of slime, it’s important to remember that it has to go somewhere. So I had to ensure that I was taking binders such as Mimosa Pudica and PB shakes to ‘mop up’ the volume of goop. At times it felt like it was drowning me (I am diagnosed with a biofilm forming protozoa known as the newly discovered by Dr Stephen Fry known as the FL1953, which some say could be the premier pathogen behind Morgellons Disease, there is not enough scientific evidence to prove this but the treatment protocol for FL1953 seems to help MD).
Getting relief from this biofilm build up in my legs was a godsend, I never believed anything would do this, and I became very enthused about Disulfiram, it gave me new hope, but the biofilm draining from ears, nose and throat continues especially as I increase the dose.
Meanwhile I observed that other forum users were sometimes reporting what could be described as Morgellons symptoms but confused as to what was the cause of these unusual symptoms, unusual for Lyme Disease that is, but all so familiar for someone treating Morgellons.
Symptoms such as itchy skin and scalp, vibrating sensations in the feet, rashes and lesions. It was all worryingly familiar to me, but my suggestion was simply ignored and as I didn’t particularly want to be the bringer of bad news I never mentioned the topic again on the Disulfiram forum.
In some ways I think the improvements can be perceived as subtle, you may have to be harbouring a ton of biofilm in order to notice when it starts to degrade – but being in less pain as my blood supply is working better is a big deal for me. I feel the problem sometimes is that many people do not understand the illness enough to appreciate what is going on when you medicate, I was once one of those people and expected a cure to happen virtually overnight and now I am trying to apply consistency and newfound determination thanks to those who inspire me on these forums.
Unfortunately I believe there is no cure for MD, at best we can hope for remission but that remission can take many many years. Such is the nature of a disease that has without a doubt in my mind, just like Lyme, been bio weaponized to be treatment resistant.
Disulfiram Research Paper: https://www.mdpi.com/2079-6382/8/2/72/htm
Disulfiram Clinical Trials: https://clinicaltrials.gov/ct2/show/NCT03891667
Biofilm, further Information: http://www.biofilm.montana.edu/biofilm-basics/index.html
Guardian article on Disulfiram https://www.theguardian.com/science/2019/jul/20/lyme-disease-is-solution-on-way
Interview with Ginger Savely Morgellons Expert:https://www.youtube.com/watch?v=otnkrT-6__8&feature=emb_logo
My Boot the The Beast Lies Within – Secret Diary of a Morgellons Sufferer. https://www.amazon.co.uk/dp/1700510835
Featured Image: Environmental Filament Sample, the Carnicom Institute. Approximate magnification of original imagery : 6000x