TAKING BACK MY LIFE 🙂
I had been ill in early 1992 with an unidentified virus, but I recovered to full health. In 1995 I had pneumonia and never recovered my health. I was diagnosed with HIV in November, 2001 and they said that my illness in 1992 was when I had seroconverted. I started taking ARVs in February, 2002 but stopped in mid-September, 2015. One year after, I am by no means recovered, but my health has slowly improved. I’m optimistic that I am on the road back. However I’m realistic about a return to full health, my body may be too damaged from taking a cornucopia of toxic allopathic drugs over many years. I could succumb to a future infection and die. Well couldn’t anyone?
DRUGS/HEALTH CARE/BIG PHARMA/CHEM
Increasingly I see healthy people succumb to numerous infections, and what used to be rare diseases such as diabetes and cancers are on the rise at an alarming rate. It’s estimated that more than 1 in 3 will develop cancer at some point in their life. And the classification and diagnosis of ‘new’ diseases and viruses continues to rise, accompanied by warnings of epidemics, pandemics, death and the usual hysterical media fearmongering, and the gleeful rubbing of hands in the pharma and the medical scientific community as they rush to develop more toxic drugs. And as for genetics! Scams everywhere.
I see people turning to allopathic drugs as the cure for everything minor to major. While I believe that some of these drugs have a place, they are toxic and should only be used with caution when necessary. There are many non-toxic remedies/methods which can be used. Why are health professionals not questioning the rise of drug related illnesses, side effects and deaths? Why are scientists not working towards developing non-toxic treatments? The power of big pharma and the chemical industry reaches far and wide. The ways we are being poisoned are legion. We are living in a toxic world.
There have been dark nights on my journey, including many hospital admissions for chest infections, asthma attacks, severe stomach pain/vomiting, and viruses. I was experiencing around thirty debilitating and painful symptoms. There have been mistakes made by professionals and downright incompetence. My son tells me I am too kind, and there has been malpractice.
I am blessed that my journey is full of the love of my children who have always supported me. They make my journey lighter and brighter, as do the few friends I hold so dearly. And so too I have been spiritually sustained by my deep love, relationship and connection to our Mother the Earth. I am also blessed to have an optimistic and joyful character, for this I thank my beloved Mother, resting in Peace.
FOOD BE MEDICINE/HEALTH MANAGEMENT
My health has improved by removing allopathic drugs, sleeping, eating a mainly alkaline diet, and eating simply but well, with fresh organic food when possible – fresh green and orange juices, herbs to support all systems, a half teaspoon of baking soda in water, 2 tablespoons of hemp and cod liver oil, vitamin C crystals in water, taking salt baths every 2 days, 2 tablespoons of low fat cottage cheese with 1 tablespoon of flaxseed oil to help oxygenate cells, the Budwig Protocol. I have been working towards making my environment more life supporting by removing toxic materials and furnishings, and using products without chemicals and toxins. I make my own organic skin cream. I nourish my spirit and soul. I laugh a lot.
What’s not improved: My digestive system is still showing symptoms of irritable bowel syndrome (IBS) – diarrhoea and constipation. I have back pain and foot pain. My wrists and hands are still weak and painful, and I am still unable to use my right hand. I have frozen shoulders with restricted movement, bone and muscle pain, tinnitus. I am less exhausted, but still unable to be up more than a few times weekly. My cognitive function is poor but I remain hopeful.
What’s improved and improving: My flu-like symptoms have become less frequent, and I’ve had none for 6 months. Symptoms like food poisoning (but aren’t) have become less frequent and I’ve had none for 5 months. I am rarely dizzy any more. The lymph nodes in my neck were swollen and painful for many years, but now the right is normal and the left only slightly swollen. The Groin Nodes were golfball sized after (real) food poisoning in Oct 2015, but are now almost normal. The tremor in my right leg is completely gone. My bone and muscle pain is reduced. My cramps are much improved. I have nausea rarely. My insomnia is so much improved. My face is rarely numb. I was unable to maintain my body temperature, but this is much improved. My digestive system is better, I rarely have belching, bloating, stuck wind. Acid reflux is rare now. My appetite had improved. My weight is up to 7st 10lbs (108 lbs). I am not so exhausted or weak, and I’m out of bed several times a week for a few hours, although I still need a wheelchair when out of the home to go any distance. Chest Infections are gone. I’ve had no serious asthma attacks recently. No recent hospital admissions. Excema is slowly healing. Emotionally, mentally and spiritually I am happier, clearer, more stable and better balanced.
SEDUCED BY THE MEDICAL PROFESSION AND PHARMA
I believed that HIV existed, I reasoned people were getting ill and dying from it, but I never believed that HIV was a gay disease. This belief was a backlash against 60/70’s free love/peace/hippie ideals, and the advances in civil rights, the rights of gay people, black people and women. All of these were a threat to the establishment, along with the movement away from the church, and the return to and rise of healing and earth spiritualities. Skullduggery was afoot, something monumental was being unleashed on us, not for the first time. Check out the history of vaccines!
I was a socialist working class child of the 1950’s immersed in Scottish culture, brought up with home remedies, fresh foods, fresh air. I moved to London in 1970, where I delighted in meeting people from other cultures. I continued to grow politically and spiritually aware.
My children were born late 70’s and 80’s and I did not have them vaccinated. I began to use herbs (taking a home study course for a year) and began using homeopathy when my first child was born. I studied Reflexology. For the stresses of life and for Spirit and Soul I used amongst others, Osteopathy, Acupuncture, Reiki, Massage, I practised Meditation, Tai-chi, Ritual, Chanting/Singing/Music, arts/crafts, writing/poetry, and spending time with nature. I returned to live in Scotland in 1990 with my three children and studied to be a community education worker. I knew the barbaric history of the western ‘development’ of mental health care, childbirth and medicine.
Regardless of my life experience and understanding I was seduced by the medical and pharmaceutical industries. How did that happen? The prospect of an early and horrible death kickstarts the job. I saw angels everywhere helping me stay alive, many of them were kind and supportive. I was grateful and remain so, it could have been a lot worse. There are a lot of good people in health care, but those who are professionals, experts, or those who know a lot can be as easily seduced as those who don’t know so much. Just look at all those misled doctors, gp’s, health workers, scientists, researchers etc. But when all is said and done, I feel not only a deep sense of disappointment towards those involved in my health care, but also of betrayal, how could it be otherwise. My story is not unusual, it is the story of many.
A CHAMPION FOR HIV
I went to workshops, conferences, worked on art projects and exhibitions, I wrote for Positively Women UK magazine, I proofread and was on the editing team. The thought of reading the articles I wrote now makes me feel oddly uneasy. I will read them again one day but not right now. I travelled to Mexico City in 2008 for the International World Aids Conference as a representative of Waverley Care. I collapsed in the street, too unwell to attend conference and had to be flown home. It was a traumatic experience, not just for the collapse, but also the poor behaviour towards me by the people I travelled with. But that’s another story.
For some time I’d been disallusioned with HIV organisations and charities, their management, and how they allocated funds. I wrote one more article for Positively Women UK in 2009 and have made no contact with any HIV organisation since then. I was done with them, but not yet with the ARVs.
Over the years emotionally/mentally I was becoming increasingly withdrawn, finding socialising difficult. I became over-sensitive and highly emotional, with copious bouts of weeping. I came to believe that it had always been so. Cognitively my once excellent memory became poor whether I was trying to remember something that happened about two seconds ago, or years ago. I often can’t find the words I want and know that I know. I can’t retain new information, or remember old. Thankfully I’ve been a lifelong diary and journal keeper, and throughout this nightmare have also kept notes of medical care.
BEING DIAGNOSED WITH SOMETHING DOES NOT MEAN YOU HAVE IT – Or That It Even Exists!
Before my HIV diagnosis I was diagnosed with IBS and asthma, had frequent chest infections. took antibiotics, prednisolone steroids, dental anaesthetics, x-rays, biopsies. After HIV I would be diagnosed in 2002 with clinical depression, in 2003 Myalgic Encephalomyelitis (ME). In 2006, bipolar, Osteoporosis in 2010, and small skin cancer in 2011. After the HIV diagnosis came ARVs, scans, numerous tests. On four occasions I took flu vaccines, and twice travel vaccines. Over the years I would be offered various drugs for this that and the other, they were keen on the anti-depressants. I would sometimes take a few of whatever it was and then stop, I knew they weren’t the answer. I was determined only to take those drugs that were ‘saving my life’ – the ARVs, anti-biotics, and prednisolone steroids. How did I become so lost?
I am not bipolar whatever that is! – a progressive brain disease! but, not according to many eminent scientists 🙂 The symptoms I was experiencing were a result of frequent steroids use over many years. This was compounded around 2003 when my asthma was out of control and I took steroids continuously for around 3 months. One of the ARVs I was on at that time was Ritonavir which boosts many other drugs, and was boosting steroids by a factor of 3. I was sometimes taking 40mg daily, that’s hefty enough. Levels increased to an effective 120mg by ritonavir. FFS!
My GP wasn’t informed by my HIV consultant to reduce my steroids! I was admitted to the hospital when I became falling-down dizzy with my face and legs swelling. I never received an apology for this incompetence, or an acknowledgement of the damage done, instead he attempted to cover it up. I refused to see him again. Thereafter any time I mentioned how ill the steroids made me I was told by my new consultant to just forget that incident and move on. I decided to stop seeing him. But it never mattered which doc I saw, it was always no comment.
And as for ME, whatever that is! It’s a known known that no one knows 🙂 I’m told this complicates my ‘health profile’ making it difficult, along with the HIV, and the IBS to figure which symptoms belong with which illness. These illnesses, and many others, have many of the same or similar symptoms. Strange toxicities.
BEGINNING TO WAKE UP
After three incidents in 2013/14 with double the dose than I had ever had of dental anaesthetics I went into a collapse and a serious decline in health. I began using a wheelchair. The dental clinic is part of the hiv clinic. Meeting the usual silence when I questioned what had happened to me, I started researching dental anaesthetics which led to m.e. groups. More incompetence. I refused to see this dentist again.
I stopped using steroids for asthma attacks and breathe my way calmly meditating. It works, I feel confident. I stopped using antibiotics for chest infections, if there were any signs I would use lots of garlic, honey, lemon, and I would take echinacea tincture. I’ve had very few chest infections or asthma attacks since stopping. I take salt baths of himalayan or epsom or magnesium. I began using herbs again and homeopathy. I began to trust in my bodies beautifully innate ability to heal itself with help from mother nature and my goodself. But I’m still taking arvs.
February 2015: I have a powerful healing dream. Some dreams are the processing of the mundane, some are wee dreams, and some are big dreams that need close attention. This was a big dream, full of healing symbols and signs about taking back control and responsibility for my healing. Taking back my power. I wrote a poem about this which I’ve included at the end.
Spring 2015: I’ve taken no antibiotics or steroids for over a year, and while I’ve had no chest infections, and only a few minor asthma episodes, which in itself is incredible, I’m not getting any better. I discover my whole body has atrophied in what seems a matter of months. My face is skeletal. However ill I had been, I had always looked reasonably well. Now I looked and felt like I was dying, my weight had fallen to 7st (98 lb). I see a new HIV consultant. My cd4 was around 600 and my viral load undetectable. That’s alright then, I should be in the best of health!
TAKING MY LIFE BACK EPIPHANY
September 2015: I had an aha! moment, I knew that I needed to stop the ARVs. I was done with them. I felt a sense of elation, and huge relief. This was my dream, this was the next step. I was astonished that it had taken me so long with all that I knew. I was about to find out a whole lot more. I began on-line searches to find other people who have stopped ARVs. I find this website (livingwithouthivdrugs.com), I find Rethinking Aids, and others. There is information and support, many others have done this and lived to tell the tale.
BUT FIRST A HARD ROAD GETS HARDER
October 2015: Such bad luck, I came down with severe food poisoning, and my son was also ill. We both had fresh juice with kale which hadn’t been well washed, it was full of earth. We fell ill the following day. It was incredibly bad timing having just come off ARVs, as if that wasn’t going to be hard enough on my body. Now the food poisoning would add to the burden. Such a fierce unintended de-tox of the ARVs.
Food poisoning aside, I wouldn’t advise anyone to just stop ARVs the way I did. I should have researched, prepared, made sure my body was well nourished, and tried to get my weight up. It would have been wise to stop them gradually, giving my system a better chance to adjust and heal. Some people’s systems are more robust, while others are affected acutely by drugs. We can each respond differently to ARVs, to detoxing, there can be many factors involved. Be canny.
But it wasn’t over yet. The following months, and on into 2016, would bring hemmorhoids, thrush in mouth and below, hair falling out, swollen face and lips, excema on face, scalp, knuckles, on body along with a rash. It became very severe, mouth corners splitting, and at nostrils, and eyes (very scary) face red raw seeping and crusting. My right hand became so excruitiatingly painful I couldn’t use it. My groin lymphs like golf balls. There is a raging battle in my body, I am utterly miserable, and that wee bit o’ fear is creeping back.
FEELING THE FEAR AND CARRYING ON
May 2016: I had told myself I wouldn’t, but I did, I visit my HIVconsultant. My cd4 is 117 and my viral load off the scale. It means nothing to me. But the visit leaves me feeling low and emotional. I’m worn down, so tired of being ill. I’m trying to keep positive.
Then my son gave me a copy of Goodbye Aids! Did it ever exist?’ by Maria Papagiannidou-St Pierre. Maria has pubished several books on the subject, in this book she charts her personal journey from diagnosis through the painful shocking unravelling of the HIV/AIDS deception. It is a journey of courage and tenacity. It is a personal story of deep love and tenderness. I knew that Maria had died and I wept for this tragedy. Her story, her legacy, strengthened my resolve at that low point.
At the same time I came across the series of videos online The Truth About Cancer – A Global Quest by Ty Bollinger, and found these to be positive and encouraging, further strengthening my resolve. I ordered the transcript. While the information relates to cancer, it’s very relevant to people coming off ARVs, or any other drugs for that matter, or anyone who just wants to keep their body healthy. It’s full of natural healing remedies to assist every function in your body in it’s return to homeostasis.
I realize that in moments of doubt, when fear arises, it’s important to bring into the front of my mind what I know about the whole sordid immoral business of big pharma and health care. For those who come off ARVs, we will go through moments, periods of fear when we imagine the worst, and we need to be strong in the face of what has been done to us. The terrible fear engendered by many years of ARVs, worry about ‘opportunistic infections’ organ failure, some HIV-related disease, AIDS, sheezo, the toll on one’s mental and emotional health is huge. Books and websites such as those I mention will support, inform and help you through those moments when your courage falters, banishing the fear and dependency created by the ammoral dangerous bogeymen.
THE BLESSED TURNING
September 2016: Eureka 🙂 at last I am seeing many improvements in my health. So just what have I been ill with? I believe my illness/symptoms, and recurrent infections to be caused by the many toxic drugs which were supposed to be ‘helping’ me, and the cycle of taking these drugs began with infection/virus. I do suspect that what you are diagnosed with can be arbitrary. What if I had been diagnosed with ME before HIV! I think my story would be a different one with no HIV diagnosis and no ARVs adding to the poisons I was already taking.
I am delighted and feel blessed to have survived this journey thus far with the prospect perhaps of even better health ahead of me. But I remain angry about this despicable sham, the devastating affect it’s had on my life, with my prime years lost to illness and a lie. And the lives of my children have also been affected, all the fear, grief and pain they’ve suffered. It’s unforgivable. How many of us!
But it’s far bigger than just an HIV sham, and that’s big enough, what’s happening to people diagnosed with HIV is happening to people diagnosed with various other ‘diseases.’ So much deception, fraud, toxic poisoning, and cruel deaths, all to the obscene tune of ringing tills, and maybe throw into the mix a wee bit of depopulation. It’s necessary to have some savvy about this toxic world we live in.
If necessary I would take antibiotics and steroids, to save my life 🙂 but so far in two and half years that has not been necessary 🙂 That is like a miracle to me, along with the many other improvements. I will never take ARVs again, they are not going to save my life, they were stealing it from me.
I will say it again, anyone can die from some infection, and if this time is all I have, then so be it. I am grateful that I have come off those drugs, grateful for the feeling of freedom I am experiencing, grateful that I took my courage in my hands and stopped them, grateful to have my life back however long or short that may be.
My courage and strength is made more powerful when I read the stories of the journey taken by other people. I have wept sad tears, but also cheered and whooped my way through your stories. If you have a story to tell I encourage you to share it here, long or short, it’s inspiring and strengthening for eveyone who reads it. I wish for you whoever or wherever you are, courage, strength, health, love, laughter and peace, food in your belly, and a roof over your head. Go canny.
REST AND BE THANKFUL
I’m alone walking wearily along a highland road,
it seems familiar, the air is shimmering, I look up
to a clear blue sky, the sun’s high and hot, I’m
sweating and shivering, I realise I don’t know
where I’m going but I know I’m on a journey,
I don’t know why, but I know that it’s very
important for me to reach the destination
I’m exhausted, each step requires a huge effort
and I’m confused by this, the road stretches
before me winding uphill into the distance,
to my right hillsides rise to mountains, on my
left a deep glen falls away to a sparkling burn,
I know this road, I’ve travelled it many times,
I can’t name it but know I’m heading North/West
I realize my body is ill and this surprises me,
and though I don’t know where I’m going I
know healing bides there, I know I’m too ill
to undertake this journey, and I know I may
not make it, but I know I can’t give up,
and something in me seems to know
there is a way and I will find it
As I struggle on I wonder about this place I seek,
is it near or far, and is there a deadline to meet
I stumble and would fall but I’m now holding a
wooden staff and it steadies me, it’s carved with a
snake holding a crystal in it’s mouth, I know I need
to rest but I’m afraid to stop and sit, I may not get up
again, but if I don’t stop I’ll fall down, I tell myself I can
get there, it’s not impossible, but now I need to rest
and trust I will continue the journey
I’m dizzy and can’t see where I’m going, I stop and
sit down slowly, in front of me I see a sign
‘Rest And Be Thankful’ and I know I’m home, I look
around and want to cry at the beauty of it and for the
joy in my heart’s binding relationship with the earth,
and as I lay my back down against the soft green I feel
the pulse of the life in her flow through me
I breath deeply in and out feeing safe and wholly at
peace, I close my eyes, and drifting on the edge of sleep
I hear the eagle call my name, and in the wake of it’s echo
a voice is whispering …..
Welcome Home, now Rest And Be Thankful
I wake with a feeling of hope and inner well being,
aware that this dream is profoundly important and
I need to pay it close attention, it’s both a dire warning
and a wise knowing, the signs are clear, I have choices,
I have the knowledge I need, I know what I do
and don’t need to do, and whom I need or don’t need
in my life, it’s been a long journey home to me …..
it’s time to Rest And Be Thankful