Relationships and Chronic Illness

Before my ex-husband and I got together, I did for a moment consider if two sick people was a really bad idea. I asked myself ‘do two wrongs make a right?’. Well technically no they don’t, but on the other hand, being the sick one in a relationship with someone who is well and cannot relate to you is torture, similarly being well and dating  someone who is not has got to be pretty grueling. After all, who wants to listen to someone complaining about their health? Don’t we want to feel inspired and invigorated in a relationship, not brought down and dismal. Truth is as we get older illness is a reality, if its not one its the other’s health that will decline, perhaps that’s inevitable.

So how to cope with each others misfortunes without loosing the bond that brought us together? This is where empathy comes into play. Empathy I discovered throughout my life, is a very rare life skill to posses. Not many people seem to have mastered it and not many care to either. I wonder whether empathy could be the ultimate test of enlightenment, I bet Buddha was an early proponent of empathy. So what exactly is empathy?

 

The Oxford English Dictionary says empathy is ‘The ability to understand and share the feelings of another’. Simple right? wrong. Receiving empathy as someone with a chronic illness can be like trying to get blood out of a stone. In part this may be because often chronic illness’s can be invisible and people judge a person by how they look. This is understandable, but I have been met often with suspicion, even been treated as someone who is looking for attention. Truth is after so many years being ill but being denied I am ill by the medical profession (even after a Lyme D diagnosis),  I learned how to suffer quietly. A friend once messaged me after she learned I had been diagnosed, and said ‘but how come you never seemed ill?’, like I must be faking it. What is hard to explain is that I always did feel ill, it dominated so much of my everyday life that I often had to have a drink to get away from feeling ill. The anxiety I experienced, the pain, the depression, without any medical support I turned to the only other support I knew. But oh how I suffered afterwards, and so continued the cycle of suffering. What people don’t tend to consider is that you don’t see sick people on their bad days, and that the reason why we hide away for such long periods is not that we are crap friends, but that we are suffering and don’t  want to be seen that way, or know how to express it.

I suspect there is a lot of people out there who’s lives are but a shadow of what they could have been because of a misdiagnosis, and often these people are made to feel degraded by relying on benefits, and sometimes relying on medications. But hardly ever will they receive empathy, quite the opposite, often society condemn such people as scroungers and are despised.

You cannot see a bacterial infection such as Lyme D, and its many co-infections. So when you decide that someone does not deserve your concern because they look OK, think again.

I suppose I learned about empathy through being sick myself, I am genuinely interested in listening to people who are sick, and I want them to know that I understand how they feel. So why is it so hard for other people to do so? Maybe they have never been sick before?  Or maybe they feel, for whatever reason, they have a harder time of it than you? What I discovered is that there is often a competition for empathy, sometimes people you meet feel that they are worse off than you. Maybe they have rarely experienced empathy from others also? Such is the nature of this evasive little life skill. Comparing situations is childlike, without walking in another shoes how can one judge how another is feeling?

As a person with chronic illness’s I have to ‘fake it’ every day. What has given me strength is other ‘Lymies’, when you think you got it bad you always meet or hear someone else who has it equally as tough or tougher. We find that its common to be treated like we are actually faking the illness rather than faking the wellness, and often see a stark contrast between those who are diagnosed with a condition such as Cardio-Vascular disease or even Cancer. People stumble over themselves to support people with these more well known conditions, yet chronic illness is treated with suspicion. Personally I think it exposes a fundamental flaw in the ‘human condition’,  and that is our need for endorsement or validation, before we are willing to give our care, our concern. Indeed I see it as a great weakness of human nature.

I discovered that despite how sick I felt, I still had a lot to give, and I gave those around me the empathy they needed, at my darkest times I found I could give even when I was not receiving. Perhaps it is the cornerstone of  humanity, but it can be a thankless task that can be taken for granted, and so for those who give empathy, I salute you! and those who need empathy, cherish it! Hold it dear, it is a ruby in a mountain of rocks.

compassionsdalaiLama

 

 

 

Parasites; Opening a Can of Worms.

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Using anti parasite medication is a no brainer if you have Lyme, IMO it has been the most helpful medication for me much more so than ABX. Not least because some of the co-infections of Lyme are actually microscopic parasites but also because Lyme D compromises the immune system, making us more vulnerable to parasites. You wont likely get a formal diagnosis for parasites, a stool sample is a waste of a lot of money (it is estimated the margin of error is about 95%. I have had 4 negative stool samples, but removed plenty with anti parasite medications). I observed my progress with  bio-resonance testing. I follow a protocol online and joined one of the many forums  where I found where to purchase medications. I knew I had parasites because of my  debilitating symptoms but I had been in denial for ages, “no not me” is of course what I thought. Tentatively, I took the medications and after about 4 or 5 days started to witness the dam break, so to speak. I never could have imagined, in my worst nightmares, that I could have been harbouring such volumes of parasites, but struggled to get an exact identification.

Of course I was horrified, but relieved to witness them leaving. I turned to friends and family to try and express what a traumatic experience this was, but was met with disbelief and suspicion, mostly in the form of silence. I did have one friend who appeared to believe me, and this was crucial to staying sane during these dark days of cleansing. Clearly this was something I had to go at alone, talking about parasites in our western culture is very controversial; its almost like the concept is not one we have embraced into our psyche. Although we acknowledge that our animals need routinely de-worming, we omit to consider it for ourselves. Many people believe this may be beneficial to the Pharmaceutical Industry, and that parasites may actually be the CAUSE of many diseases. The very well renowned and revered Functional Medicine practitioner that I first saw in the UK, once said to me that “parasites are the medical profession’s best kept secret”. Perhaps it is because we fear them so much, we would rather believe someone is mad than riddled with parasites.

Repeating was necessary and as I found, it can take years. It is unlikely you will see them otherwise. Starting slow with Mebendazole, which is easily available online from various pharmacies,  is a good idea as it works in the gut rather than the whole body, before working  up to using systemic meds. The colon must be clear, and bowel movements must be regular when using parasite meds, so psyllium and bentonite is best used to follow  dosing and as a bowel cleanse prior to dosing. The reason one must start slow is because when parasites are killed they release a dangerous list of toxins into the body which can include ammonia and heavy metals, as well as the myriad of bacteria and virus’s they are coexisting with within the biofilm matrix, and this can make you very sick. Using binders such as the psyllium and bentonite really is of paramount importance, as is keeping well hydrated. In order for the meds to work well I needed to restrict portion size when taking with food. If you have liver toxicity, or suspect you have, it is a good idea to get your liver enzymes checked before and during a protocol. Of course it is preferable to visit a trained parasitologist or a functional medicine practitioner, but for many of us this is not financially feasible, an appointment with a parasitologist within the UK will not get you very far because without the positive stool diagnosis you will not be treated.

Many people start with herbal cleanses but in my experience they are not powerful enough to have any substantial benefit. I did try to tell myself I had cleansed through following a herbal protocol, after nothing could be seen I was happy to believe I was parasite free. A much different story after using pharma meds. Some people favour a more holistic approach than pharmaceutical, but for me this meant very ‘aggressive’ use of herbs, I had taken different Chinese herbs as well as the standard ones that are usually recommended, but found no results although some do when taken for long periods of time. But my health was declining fast and I had to respond equally as quickly.

A favourite Functional Medicine practitioner of mine is the German born Dr Klinghardt. This is the doctor that I really wanted to see but alas he does not take new clients anymore, rather he tours internationally giving seminars and training practitioners. Much of what he advocates is rooted in treating parasites, and in his presentations he ties in many different alternative therapies to reduce the bodies burden of these unwelcome guests. Like so many alternative practitioners he rarely advocates the use of pharma meds, but has been quoted to say that anti parasite meds are the exception and usually a very necessary component in improving chronic illness’s.

One of the problems we see, us who use these medications, is that although they are very helpful and health can be dramatically improved, it seems impossible to eradicate parasites completely. This can be for various reasons, it may be that parasites have become disseminated meaning they have spread to various areas of the body other than the gut, which is harder treat, but also it appears that we are seeing parasites that have mutated and are fairly tolerant to the drugs. This is a very worrying situation;

Author and Lyme D ‘survivor’ Bryan Rosner has researched very extensively into using anti-parasite treatments as part of the treatment of Lyme. His latest book; “Freedom from Lyme Disease: New Treatment For A Complete Recovery” He makes some pretty relevant observations with regards to Lyme (Borrelia) and parasites,

“Many physicians and researchers now believe that there are also other, recently discovered community members living within the infectious colonies inside the body of an infected person. Modern science hasn’t solved all the mysteries surrounding this discovery, but we are beginning to uncover some answers to important questions. For example, we know that these community members are larger than Borrelia, Bartonella and Babesia, and we know that they play an important role in the Lyme complex. They are likely worm, or worm-like organisms, or even a number of different species of worm-like organisms. It is also possible that these organisms may have merged with Borrelia, creating a type of hybrid organism with shared DNA.”

I would like to know where Brian Rosner got that information from, he does not cite it in the article written for the website Public Health Alert here, but I suspect It may well be in part from Dr Steven Fry’s research, whom has caused a stir in the Functional Medicine world. Dr Fry is a regular MD and practices so, but he has generated a lot of attention due to his research into what was named the Fry Protozoa and now the  Protomyxzoa Rheumatica.  A protozoa put simply is a microscopic parasite,

“Protozoa, as traditionally defined, are mainly microscopic organisms, ranging in size from 10 to 52 micrometers. Some, however, are significantly larger. Among the largest are the deep-sea–dwelling xenophyophores, single-celled foraminifera whose shells can reach 20 cm in diameter.[19] Free-living forms are restricted to moist environments, such as soils, mosses and aquatic habitats, although many form resting cysts which enable them to survive drying. Many protozoan species are symbionts, some are parasites, and some are predators of bacteria, algae and other protists”.

His discovery came about through his interest in Chronic Fatigue Syndrome amongst his patients some years ago, he was intrigued as to why apparently healthy individuals would suddenly become sick, often after going abroad for vacations. Dr Fry discovered the new protozoa residing inside the blood samples of his patients and spent may years researching into what taxonomy it belonged to;

“At first I thought it was Babesiosis, and over the years, and a lot of money, and a lot of time, turns out it was actually a malaria-like organism with an extremely complex lifecycle that forms biofilm communities in the blood, it is a blood-loving parasite. And after mapping the genome of it, and we didn’t really name it until we had done that it’ probably a new genus, in the phylum [???]. You know, similar to malaria, similar to Babesiosis, even more complex genetically, sort of in between a helminth [parasiticworm] and a protozoan”

When I heard that some people with Morgellons Disease had been diagnosed with this Protozoa, and I read his interview, I began to suspect that I may be carrying this organism. After all it was insect vectored as Lyme is and its main characteristic was that it is a biofilm building protozoa. Could the tick that I was bitten by 20 years ago been carrying this disease also? Or was it the hundreds of mosquito bites I experienced whilst travelling Asia? The parasites I was passing after taking ant-parasite medications, the Ropeworms, seemed to be coming from or connected to a type of biofilm residing inside the gut, so I moved out of my home and into a tent to save the money for the very expensive test.  I got tested from the UK at Fry Labs in Arizona, and sure enough I was positive for the Protomyxzoa. I was sure this was my best bet to go to Arizona, but after a harrowing journey to the USA to see Dr Fry, I was told that my case was too far advanced, that he did not have the knowledge of how to treat the organism once it was in the “worm stage”, and he advised me to visit a Dr Amin the well known parasitologist, whom he added, was a close friend and lived on the same street as him. I knew a fair bit about Dr. Amin, he had his own theory of what the cause of Morgellons Disease was, and marketed this theory, even attempting to use a different name for it that he  chose himself; Neuro-cutaneous Syndrome (NCS). Crucially what I knew about Dr Amin was that he appeared to vehemently dismiss the existence of these Ropeworms. My colonic irrigation specialist told me she was going to a parasite conference in London, and as she was intrigued by the strange worm like stuff she could see exiting from me, decided to stand up at Q and A time, and bravely ask Dr Amin about Ropeworm. He preceded to shoot her down publically and true to his reputation, further denied that they were a parasite at all. She said she felt humiliated by his response, somewhat overwhelmed,  I could tell she withdrew her interest in my search for answers after that. Dr Amin should know right?  after all he is a parasitologist, but then why did I and many others, remove such vast amounts with parasite cleanses? And why would Dr Amin be so eager to dismiss the possibility. DNA sequencing of this organism had not been achieved, and at such a high financial price, it was unlikely to be neither.

Dr Fry prescribed me what he said was his most aggressive protocol of anti-parasite medications; Albendazole and Ivermectin, which I had been taking, pulsing, for at least a year prior to our appointment. These drugs were only partially effective, though it was true they had helped me immensely in the beginning.  After visiting a pharmacy in California, at nearly $2,000 for a months supply, I realised that the human version of these medications was a luxury I could not afford, unless I went to Mexico…….

References;

Parasites and worms the new Lyme D co-infection http://www.publichealthalert.org/parasites-and-worms-the-new-lyme-disease-co-infection.htmal

Protomyxzoa Rheumatica / Fry Protozoa  http://protomyxzoa.org/

Morgellons, parasites and Dr Amin https://www.parasitetesting.com/morgellons.cfm

Increasing virulence of parasites globally http://www.ncbi.nlm.nih.gov/pubmed/20399129