HEAL London

A more intelligent approach to HIV/AIDS

The Fight of My Life

15/06/2012

 

I was diagnosed ‘HIV’ positive two years ago to this day. I was 17 weeks pregnant at the time and had just left my relationship 8 weeks previously due to on-going domestic violence. Given my circumstances I was surprisingly upbeat as I walked into the hospital that evening. The sun was shining, I was getting stronger with every day that passed and I felt that things could only improve. I couldn’t have been more wrong.

 


To my knowledge I was attending for a routine antenatal appointment. I sat in the sunlit waiting room looking around at the breastfeeding posters on the walls and allowing myself to bask in thoughts of cradling my baby. I felt full of optimism about my pregnancy and the life that lay ahead of us and above all I felt happy for the first time in as long as I could remember.

 


When I was called into the consultation room I went smilingly. I greeted my midwife and the ‘health adviser’ who was with her and took the seat I was offered. Still smiling, though aware on some level that they were not, I looked expectantly from one to the other waiting for the appointment to commence. It never occurred to me there might be a something wrong. It was the health adviser who spoke first. I don’t remember her words exactly; something about a problem and blood tests, but I remember the impact of what she said.


The shock that hit me was akin to a physical pain; a blow so excruciating and crushing that I had to mentally stop and check whether I was still breathing. I was reeling and it took a minute to realise what I was experiencing was in fact real and not the disorienting nightmare it felt like. As I broke down and cried my midwife and the health advisor looked on; kind but a little uncomfortable at my outburst. I immediately wanted to be alone. I could feel a scream welling up somewhere deep inside me and I didn’t want to hold in; I wanted to let it out and to keep on screaming.


When I finally managed to somewhat subdue the anguish and panic that was threatening to unhinge me on the spot and the room came back into focus the questions poured forth. I wanted to know what this meant for my unborn.  Would my baby ‘get it?’ I asked desperately, looking from one to the other. ‘No… No’ came the hesitant response. They had really good drugs now they said. ‘Are they safe I asked?’ ‘Perfectly safe.’ was the response. It was good we had discovered it early they told me as we would have plenty of time to ‘supress’ the virus in my system and the risk of transmission would be reduced to 0.01%. I could have a natural birth. I should avoid breastfeeding though. The latter part sent me back into tears again. The thoughts of not being able to breastfeed my baby; to miss out on sharing with them that exquisite bonding experience was unbearable, especially believing I had nobody to blame but myself.


I struggled to supress my guilt and grief before returning to my line of questioning. I wanted to know about the drugs; namely where could I get them and how quickly. They said they’d speak to me more about that later and that they’d probably start to think about that when I was at about 22 weeks gestation. Troubled, I asked whether it wouldn’t be possible to start straight away- for maximum benefit. They exchanged glances before replying that they preferred to ‘wait until after the first trimester’. ‘Why?’ I asked. ‘Oh… is it in case of any complications?’ Again they exchanged glances before replying ‘Yes’ but said nothing further.


I’m a ‘fighter’, to use a cliché, and when I left the hospital I suddenly remembered myself and was immediately imbued with a new positivity. I decided I wasn’t going to let the diagnosis or any illness for that matter, rule or ruin my life. I decided I was going to be a present and dedicated mother; the best mother anyone could wish for. I found myself calculating the minimum number of years I needed to stay alive in order to see my baby into adulthood. This thing was my own doing, I thought, but I wasn’t going to let it conquer me; at least not yet.


Over the next few days I managed to maintain a semblance of normality. There were times that I found it hard to breath with the weight of it all, when I just prayed, forehead pressed to the floor. I begged God to somehow make it all go away; to let HIV be nothing but a terrible mistake. I actually remember sobbing out those exact words. For the most part however I coped and I went about my day as if nothing had happened. I was entering the final and toughest stage of my University life and I didn’t have time to mope; even if it had been in my nature.


Despite my determination to be strong and make the best of things there was one factor that bothered me immensely, which simply wouldn’t go away. I was worried about taking drugs in pregnancy. The words of the medics in relation to the safety of the antenatal drugs ‘Perfectly safe…. We like to wait until after the first trimester’ came back to me repeatedly. The two sentiments didn’t tally. And I had seen the glances they exchanged. I am somebody who always approaches medicine with extreme caution. I have rarely taken antibiotics, I’m not in favour of vaccination, I always look to diet and environmental factors to try to establish the cause of any ill health I might experience and prefer to use natural healing methods. In this case it seemed there was no alternative to a pharmaceutical solution but it occurred to me that no drug was without side effects and this frightened me. I resolved to ask my doctor more at my clinic visit.


When I started to ask about the drug safety to be fair my doctor was open and encouraging. She spoke to me about the benefits and the risks as she saw it. She mentioned a study that had shown cases of mitochondrial toxicity but said the results could not be replicated and she stressed how effective the drugs were at preventing mother to child transmission. Despite her assurances the more she spoke the more uneasy I grew. I felt like I was missing the point, like there was some overwhelming piece of evidence in favour of the safety of these drugs that she was omitting to give me or that I hadn’t understood correctly. Deaths, mitochondrial toxicity, cross the brain and the placenta, CD4, viral load, test, confirm, medicate-my head was spinning. I kept asking. At last she said to me quite openly ‘We simply don’t know’. She was sorry that she couldn’t give me more surety but she simply didn’t know. Naturally this wasn’t a satisfactory answer.


When I got home from my appointment I sat down at my computer and started to run searches on HIV drug safety. That was my only concern. I had no other issues with anything I had been told at that point. As I trawled the net I came across all the usual orthodox sites. Many of these sites had information on the side effects of the drugs but few of them said anything specific about pregnancy. Nonetheless reading about lipodystrophy alone was frightening given the importance of fats for the development of the fetus; particularly the development of its brain. As I continued to search I came across an article by Tony Lance on ‘Intestinal Dysbiosis’. For the first time ever I realised that there were people out there questioning the causative factors of AIDS. Immediately I started to try to find out more about these alternative theories on AIDS and ‘HIV’.


While looking on youtube for videos of Tony Lance I came across a video by the organisation ‘HEAL London’. As I was based in London at the time I went straight to the website and rang the number almost instantly. The following evening my call was returned by Mike Hersee. Mike spent about three hours re-educating me on the truth of HIV. He told me the tests were invalid, that HIV has never been isolated and that there is a lack of any credible evidence to tie AIDS to a viral cause. He illustrated for me the lack of basis for treating with antiretroviral drugs and the potential horrific harm my baby could incur as a result of exposure to these toxic substances. I was left with vast amount of information that night yet it was given to me in such a calm, logical, clear fashion that I couldn’t but see that it was far more authentic and made far more sense than what the doctors were telling me. I decided then and there that I would not be taking ARVs and that if I had any say in the matter my baby would not be given them either. Mike was honest with me; he mentioned other cases he had been involved with, where the authorities had come down very heavily on parents who had resisted their children being treated. I wasn’t scared at the time, had I known what was ahead of me I would have been.


One of the first things Mike suggested I do was to speak to Anthony Brink of the Treatment Information Group; which I did. Anthony confirmed what Mike had told me and pointed me in the direction of his monograph on mother to child transmission and other writings of his, freely available on his website www.tig.za. I considered leaving the country but financially this was not a viable option and there seemed to be nowhere I could go that would allow me both adequate medical care and the option to refuse antiretroviral treatment for my baby after birth. Prior to being diagnosed I had planned to leave England for my home country once I had finished Uni and when I weighed everything up this still seemed like the best of a bad lot of options in terms of my child’s well-being.

 

Mike also repeatedly impressed upon me the importance of securing legal representation as quickly as possible. Unfortunately this proved extremely difficult and the fact that I had moved did not help matters. No lawyer I spoke to seemed to be able to grasp the fact that doctors can get things very wrong; neither did they want to challenge the medical orthodoxy, besides I had no money whatsoever. My family were supportive but found it hard to get their heads around all the information and didn’t know how best to advise me. I hadn’t told any friends bar my best and she lived in England and likewise was supportive but didn’t know what to think.


During this period I was bombarded by doctors and social workers and manipulation at the highest level. The doctors were irate that I was questioning them; that I refused to accept as given the textbook knowledge they gave me as assurance that their drugs would not harm my baby. At first they spoke to me at length but when I wasn’t satisfied with the shockingly inconsistent and often factually incorrect answers I was given they quickly lost patience with me and their attitude quickly changed from bemused sympathy; speaking to me slowly as though I was incapable of understanding what I was being told; to a passive aggressive approach that often saw them transgress the boundaries of professionalism. On one occasion I was briefed for a C-section by being told it was a ‘horrible, horrible procedure’ and that I would ‘feel everything’ so I should just ‘take the drugs’ and ‘have a nice natural birth’ as though I had chosen to refuse treatment based on some self-interested objective rather than utter terror at the thoughts of harm befalling my child.


The social workers were much more compassionate. Though varying in their approach; all seemed to recognise my concerns as well-founded and repeatedly stated they were on my side and had no concerns about my parenting. However, to them the risk of ‘Mother to Child Transmission’ outweighed any risk of drug damage and this caused them to question my ‘reasoning’. They were as lacking in knowledge and ignorant about the matter as I had been-with one difference-their unwavering belief in the infallibility of the doctors stopped them from looking any further.


I was surrounded by incompetency on all sides and would have been completely and utterly alone and without effective support was it not for Mike Hersee. Mike spoke to me almost every single day; very often to the detriment of his own phone bill. He pointed me in the direction of relevant information the doctors were not giving me, carried out analyses of the information they did give me, told me everything he knew from his own hands-on-experience and years of research, wrote for me, coached me prior to appointments and debriefed me afterwards. He spurred me on when I lacked the courage and the energy to keep fighting and he constantly directed me to the literature and documentaries that made sense. Mike understood my fears and reticence in opposing the doctors and health services outright as well as that it was imperative for me to do just that. He patiently went over and over the same ground with me when I needed to get the alternative view on something the doctors had thrown at me. We often spoke late into the night and I know Mike lost nearly as much sleep over my baby’s plight as I did myself. I’m quite sure I couldn’t have survived the ordeal I went through without HEAL London. Everything was explained in a simple and logical fashion and there was nothing I couldn’t ask or get an answer to, no matter how often I asked the same questions.


In the final weeks of my pregnancy the pressure on me from the health services intensified and they decided to launch court action against me to seek an order to allow them to medicate my baby at birth without my permission; as by then I had refused consent. I was still without representation at this late stage and was facing the prospects of walking into the court entirely alone at my most vulnerable. In the week the proceedings were due to take place Mike called with good news. He had found a barrister in my home country who was not only willing but eager to take my case and he was happy to work pro bono.


My barrister and the solicitor he chose worked day and night before the case and put up a courageous fight, particularly given they had come to the scene so late and that I was due to give birth so soon. I agreed for the purposes of the court to ‘accept’ my diagnosis despite acknowledging my doubts around its validity, to abstain from breastfeeding and to have an elective caesarean section in order that the only focus of the case would be the toxicity of neonatal antiretroviral treatment. The judge said he recognised that the case centred on a mother who was deeply concerned about her child’s welfare. He claimed the state did not have the authority to impose the treatment where the risk: benefit ratio had not been established as only the percentage ‘benefit’ could be attested to by doctors and the percentage risk remained an unknown, yet, in the end, my former partner (an unmarried father with no legal ‘parental rights’, present in the court only in the capacity of an ‘interested party’) was able to nullify my lack of consent by giving his. I’m all for the rights of single fathers but I fail to understand how a presiding judge could have made a legally valid court order for medical treatment based on the permission of an individual who had no legal right to give consent or, if he did, why court action was required to begin with. Clearly he had mentally swept aside the evidence we presented with his overriding faith that the doctors could not err. My barrister has since told me that we could have won on appeal but that the order would have stood until overturned and the judge was aware we did not have the time to appeal. In essence this was nothing other than another case of legalised medical abuse.


My baby was medicated for 4 weeks, under court order. The head Paediatric AIDS doctor swore under oath she had never had to stop treatment or reduce dosage before unless a child had a serious underlying condition. However, my child was taken off the drugs for 6 doses after ten days of treatment due to a drop in white blood count and the drugs were later given at a 10% reduced dose for the remaining period. The doctor also omitted to prescribe Septrin for my child at 6 weeks, as I had been told on three occasions would happen as a matter of course. I know the fight to protect my baby from the deleterious effects of these substances was not in vain. The doctors were given the right to medicate yet they were clearly extremely cautious with my child; stopping the anti-retroviral therapy at the first indication that the white cell count was down. My child was also spared exposure to the highly-toxic Septrin antibiotic (exposed by the infamous Brian Deer, UK), which has been documented to cause potentially horrendous side-effects. These were of course small consolations within the greater context but, for me as a mother, having my baby’s total ARV exposure reduced from 56 doses to the equivalent of 45 doses and for Septrin to be avoided altogether was a significant gain in terms of my tiny infant’s health. It was not my ideal outcome but it was worth the fight.


Thankfully so far my child is healthy, PCR negative, outstripping developmental milestones active and happy. The final antibody test will be conducted in 6 months’ time and, providing this is unreactive, we will then be free to move on with our lives. I undoubtedly have concerns regarding the effects of the ARV exposure on my child’s long-term health but as there was no in utero exposure I am hopeful and optimistic that we will be lucky in this regard.


I stopped attending the HIV clinic myself at the end of last year. Going there felt farcical. I don’t personally believe that a virus causes AIDS. I don’t believe that a ‘HIV’ diagnosis indicates the presence of a virus. A positive antibody test may or may not indicate an immune system under stress and may or may not, therefore, be indicative of future ill-health. In terms of transmissibility of any elements of this, perhaps partners are causing each other to have antibody reactions or transferring antibodies to one another by exposure, particularly in cases extreme promiscuity but until entire populations are being tested across the board (perish the thought) it will be impossible to have any realistic mapping of who might potentially have ‘transmitted’ to whom. Moreover, as elucidated by The Perth Group, until a viral cause of AIDS is actually proven beyond reasonable doubt ‘HIV’ tests are in fact of little significance. In any case immune collapse has multiple documented causes and I will continue to look first and foremost to dietary and environmental factors to remedy any ill health I may experience. At the end of the day I’m not a scientist or a doctor but I know a flawed and inconsistent discourse when I hear one. I’m healthy and I’m thankful for that.