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 Bugdorferi), 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.
‘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
Featured Image: Environmental Filament Sample, the Carnicom Institute. Approximate magnification of original imagery : 6000x
We keep hearing how a common Malarial drug Chloroquinoline derived from the herb Artemisinin, is effective against the virus. But why is this? It is not an anti viral medication.
Dr Marty Ross says in his Q and A this month that it maybe because Chloroquinoline is an Ionophore, and this helps transport zinc into the cells:
“Zinc blocks the enzyme that controls virus replication inside infected cells. Hydroxychloroquine is an ionophore that helps carry Zinc into cells. Taking zinc supplements without an ionophore like hydroxychloroquine is not that helpful. Another zinc ionophore that is shown to help in laboratory studies is the supplement quercetin I mentioned earlier in the section on Cytokine storm.”https://www.treatlyme.net/guide/coronavirus-lyme
Elsewhere, information on the use of Chloroquinoline relates to Toll Like Receptors:
‘TLRs are the main elements of our immune system, and they should be maintained functioning to keep the integrity of innate immunity’.https://link.springer.com/article/10.1186/s42269-019-0227-2
Another herb that appears to be gathering much attention in regards to Covid19 is Liquorice, due to its anti viral characteristics. In the MERS and SARS outbreak 2002 – 2003, liquorice was described as the only TCM substance that the SARS – CoV was susceptible to IN VITRO:
‘The only TCM for which anti-SARS-CoV activity was demonstrated in cell culture (but at relatively high concentrations), was glycyrrhizin, a compound found in liquorice (Cinatl et al., 2003a)’.https://www.sciencedirect.com/science/article/pii/S0166354213002234
Intravenous TCM for Pneumonia.
In a publication in the Lancet 2017, titled: ‘Intravenous infusion of Chinese medicine Xuebijing for patients with severe pneumonia: a multicenter, randomised, double-blind controlled trial’, 710 patients were randomly allocated to receive intravenous injections (100 mL) of 0·9% NaCl BID (control) or Xuebijing (in 0·9% NaCl) BID for 5–7 days. Clinical and laboratory parameters were recorded and analysed for efficacy and safety, the results proved the IV’s to be beneficial in patient recoveries:
‘Taken together, Xuebijing infusion combined with standardised treatment could reduce mortality in patients with severe pneumonia, suggesting that Xuebijing could be a potential and promising adjunct therapy in severe pneumonia’.https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)33172-0/fulltext
Science Supporting TCM.
If your like me and waiver in your confidence of herbal remedies and Traditional Chinese Medicine, then you may find these scientific studies on acupuncture points using CT imaging and on meridians with injected dyes, make you feel a bit more open minded to the ancient practice of oriental medicine:
‘In a study published in the Journal of Electron Spectroscopy and Related Phenomena, researchers used contrast CT imaging with radiation on both non-acupuncture points and acupuncture points. The CT scans revealed clear distinctions between the non-acupuncture point and acupuncture point anatomical structures…..Whilst in Korea, scientists studying oriental medicine with biophysical methods injected a special staining dye which coloured the meridians. By injecting the dye onto acupuncture points, they were able to see thin lines. These did not show up at non-acupuncture point sites where there are no meridians. The researchers discovered that the meridian lines are not confined to the skin, but are in fact a concrete duct system through which liquid flows, and that this liquid aggregates to form stem cells’.https://upliftconnect.com/science-proves-meridians-exist/
One cannot help but question if the Chinese employed natural remedies or Traditional Chinese Medicine (TCM), to assist with the treatment of Covid19?
It just so happened that the State Council Information Office (of the People’s Republic of China) the SCIO, gave a presentation the the press on March the 25th titled:
SCIO briefing on TCM’s important role and a list of effective drugs in COVID-19 prevention and control.
In this briefing the first speaker divulges that there was more than 4,900 TCM medical staff across China supporting Hubei which included three academicians and hundreds of experts, accounting for about 13% of the total medical staff assisting Hubei. The population of Hubei in 2015 was 58,500,000,
‘A total of 74,187 COVID-19 patients, or 91.5% of the total confirmed cases nationwide, have been treated with TCM. Among them, 61,449 were from Hubei, accounting for 90.6% of confirmed cases in the epicenter province. Clinical observation showed that the total effective rate of TCM treatment reached over 90%’.http://www.china.org.cn/china/2020-03/25/content_75857989_2.htm
Yu Yanhong, a member of the Central Guidance Team in Hubei province, a member of the Leading Party Members’ Group of the National Health Commission, and secretary of the Leading Party Members’ Group of the National Administration of Traditional Chinese Medicine, goes on to divulge that in the absence of allopathic medication during the Covid19 pandemic civilians in Wuhan were treated, effectively, with TCM:
‘Since there is no effective medicine or vaccine, we began to give TCM decoctions and proprietary Chinese medicines to our patients. At the beginning, it didn’t go well; we only delivered medicines to some 3,000 to patients from 13 districts of the city on the first day. The curative effect of TCM appeared after two or three days, however. With the fever gone and cough reduced, patients began to try TCM on their own initiative, and more than 10,000 bags of TCM decoction were delivered at that time. So far, we have delivered TCM products to more than 600,000 patients. What’s the effect? It has contained the spread of the epidemic’.http://www.china.org.cn/china/2020-03/25/content_75857989_2.htm
Adjunct Therapy to Support Immunity in the West.
In the UK we have not been given any advice acknowledging the relevance of vitamins, minerals or herbal medicines to strengthen the immune system, yet it is long established in medical literature that the immune system fights infection when functioning well – the correlation is undeniable. Yu Yanhong summarizes that:
‘Centralized isolation of all suspected infection cases, and enabling our patients to take TCM have contained the spread of the epidemic, which is the foundation of our fight against COVID-19’.http://www.china.org.cn/china/2020-03/25/content_75857989_2.htm
Because I have existing health problems and am educated in the treatment of my immune compromised condition, I have every confidence in helping myself and don’t need our Government or health service to advise me what to do, but the majority of people are looking for answers and confused by conflicting advice. Could it be that our health service or rather allopathic medicine, is simply lacking in knowledge? It has certainly been offered to us by China in this statement by Yu Yanhong:
‘We are willing to share with the rest of the world our valuable experience and effective treatment on COVID-19. WHO Director-General Tedros Adhanom Ghebreyesus has also underlined the effectiveness of the measures taken by China to deal with the virus, urging other countries to learn from China’s experience’.http://www.china.org.cn/china/2020-03/25/content_75857989_2.htm
The WHO urged other countries to learn from China’s experience?
Or, could it be a vested interest on behalf of the pharmaceutical industry to ignore Medicines that cannot be patented?
We in the West, rightly or wrongly, won’t treat the virus without our own clinical trials, the use of Chloroquine is not licenced for use, so what are we treating patients with? Nothing yet, it would seem after trawling through the NICE guidelines on Covid19 I cannot find anything recommended to treat the virus……yet in Hubei province, three medicines have been found effective:
‘Up to now, “three medicines and three formulas” have been proven effective in treating the disease, namely: Jinhua Qinggan Granule, Lianhua Qingwen Capsule, Xuebijing Injection, Lung Cleansing and Detoxifying Decoction, Huashi Baidu Formula, and Xuanfei Baidu Formula’.http://www.china.org.cn/china/2020-03/25/content_75857989_2.htm
What a shame we have not taken the knowledge, experience and advise of the Chinese on this one.
In a typically sober comment to the press regarding China’s recommendations to use TCM, Dr. Edzard Ernst, a professor emeritus of complementary medicine at the United Kingdom’s University of Exeter, said:
“TCM mixtures can be toxic, contaminated or adulterated with prescription drugs; they can also interact with prescription drugs,” Ernst said. It can also give patients a false sense of security, leading them to neglect proven medications or therapies.”https://www.nbcnews.com/news/world/china-encouraging-herbal-remedies-treat-covid-19-scientists-warn-against-n1173041
Of course there is always more than one facet to such a complex medical situation, but the Chinese seem to have done a good job at eradicating the virus, I hope we can follow in their footsteps.
In the meantime here is what I am using to boost my immune system:
High doses of Vitamin C (4,000 to 8,000 mg per day, depending on symptoms). I like to use Vitamin C that contain Rosehip Bioflavonoids.
Zinc 50mg twice a day.
Multi – B vitamins (I use Methyl B vitamins to assist with MTHFR gene polymorphisms). Once daily.
To lower Inflammatory Cytokines:
Bioflavonoids (I use pine bark extract or Pycnogenol), 100mg twice a day.
I prefer Pycnogenol due to its higher absorption rates but Quercetin is also highly recommended, see this article for further information on bioflavonoids.
Please leave a comment and share what you are doing to help your immune system, or not!
Conversations with Marty Ross, Q and A.
Many of us who are Immune compromised are concerned about whether we are more susceptible to Covid19,
I am keeping an eye open for the signs of tick borne and bio weaponized disease markers using my new Bioresonance Machine, the Hunter NLS 4025.
Most of us associate the word histamine with pollen and allergies but histamine is one of the key compounds that connect many of our body’s processes.
There are four histamine receptors in the body, H1, H2, H3 and H4, and only H1 and H2 are involved in our allergenic response to pollen, creating common symptoms such as congestion and sneezing.
Last nights free presentation with the Natural Body Cafe on female hormones and the link between oestrogen and Autoimmune conditions hopefully provided some clues and answers to finding health and happiness (and weight loss) and loosing those mood swings! But there is so much more to hormones than we could possibly imagine……..
Considering its literal description – ’tissue pain’ – it’s beyond me how the medical profession is still getting away with it. But, yes, Fibromyalgia (FM) is the general label given to the condition suffered by so many people, predominantly women, who have a set of symptoms that their GP can’t or won’t investigate.
Not being one to partake in recreational drugs, but following a bicycle indecent recently, I was struggling to cope with the pain despite being prescribed a powerful anti-inflammatory and paracetamol every four hours.
I turned to our dear, revered Mary Jane, at just the right moment. You see, in the past I had attempted to use CBD oil as a therapeutic tool but, unbeknown to me, the levels of THC were still too high for me and I didn’t react in a positive way. I’m guessing it was likely my very low blood pressure and tachycardia which triggered me to have my first seizure, so I was fairly apprehensive about trying it again. Fate had it that a friend of mine was visiting from USA who is a CBD oil supplier, and sold me some high strength at a fabulous price, with the guarantee that it was a low dose THC… You can find the same product here.
Where does the brain end and the body begin? There’s no exact defining point, and so we should embrace mental health as being entwined with physical health, but the medical system tends to compartmentalise the two separately.
Have you heard of Bioresonance?
You should have heard of it by now, as it has been around for a relatively long time and it’s very smart……