Where is my period?

Day 6 I think, of the treatment and this morning I woke up to urgent diarrhoea, a cascade of water that left me shaky and weak. My first thought was; Was it because of the coconut yogurt I ate late last night? Then I remembered the medicines have this sited as a side effect…

So today I decided not to eat or drink anything but banana and boiled eggs, that lasted til lunchtime!! But no more bum waterfalls which is a plus.

Where the Hell is my period? I am 2 days late which is odd and I don't like it. I am sure that I haven't had any unprotected sex with my partner, but I am still worried. I wore block red today to invite my blood to be released. 

The medicine is so confusing that I don't know how my cycle is feeling? 

Normally I have 3 days a month where cleaning is loved, just before my bleed. The type of cleaning that pays attention to emptying cupboards and hoovering under all the bed, taking a toothbrush to the bathroom tiles etc…I have felt like this since I start the meds, 6 days of cleaning…feels very weird but the house looks good!

Co-infection & immunocompromised….Or Ditching one virus and getting super strong…..so the other ones stays hidden.

Day 5 of treatment and I have got a full on Genital Herpes simplex outbreak, a pain in the arse literally! I was infected with this virus 20 years ago, I was living in a truck on a Spanish river-bed, strip washing in a bucket. I remember the first outbreak, it was so very pain full, large blisters appeared all around my vaginal. I was so mortified, felt dirty and embarrassed I had to ask a neighbour with a house if I could take a shower. 


Since that initial outbreak, I have suffered with outbreaks almost monthly barring my 2 pregnancies, where throughout the gestations I have no outbreaks at all which was blissful.

In the first few years each outbreak would render me immobile, as walking was excruciating. I used hypercal cream as topical relief but although it did soothe considerably, it did nothing to lessen duration or severity of attacks. All this time I was co-infected with Hep C but was unaware.

In my first year of university I chose to write a pathology assignment on Herpes simplex Viruses so I got to learn a lot about my beast! This is a clever virus laying dormant in the nervous system, the sensory nerve ganglion.

There are 2 types of this particular virus, Herpes Simplex 1 and 2 (HSV-1) Oral (HSV-2) Genital, but as we humans kiss each others genitals, we can become infected with HSV-1 on our genitals and HSV-2 around our faces. 

HSV-1 most often sleeps in our trigeminal facial nerve, waking up to erupt on and around our mouths,  and HSV-2 in the nerves around our sacrums, waking up and erupting any where below the waist.

My outbreaks come just before or after my periods generally and over the years I have treated them, to lessen severity and duration, internally with lysine (an enzyme) which slows and sometimes halts viral replication, sometimes taking 5000mg of it daily, vitamin c, to boost my innate immunity, elderberries (kick ass antiviral), lemon balm, hypericum, oats (nervine)…externally lemon balm and hypericum balm, neat lavender e.o., and tons of hot baths to relieve pain. Being co-infected with Hep C means that I am immune-compromised so I guess that is one of the reasons I get so many outbreaks so I hope clearing the virus will lessen the frequency of attacks…

There is a medication called Acylovir, an anti viral drug that is used against Herpes simplex, I have been resistant to it for years but now I am wondering if I should give it a go with this latest outbreak??? I am not going to just thinking about it at this stage…I have taken lysine 5000mg

I have explored ideas, that as it comes out around my base something may be out of balance with my root chakra? 
Root energy centre is responsible for your sense of safety and security. The word Muladhara (sanskrit/yogic) breaks down into two Sanskrit words: Mula meaning “root” and Adhara, which means “support” or “base.” 

3 years ago I got a demon rash from hell, all down both my flanks, looking like herpes blisters, the doctors thought it was disseminating shingles( also the herpes virus), as it crossed several dermatomes. It bloody hurt and got me seriously worried about being what they called me 'immunocompromised'. I don't like that word, sounds crap to me….

here is my blog post on how I treated it herbally 

http://sensoryherbcraft.blogspot.co.uk/2014/02/hepatitis-c-shingles-demon-rash-from.htmld


I so hope losing one virus will impact and this other one will stay sleeping!

I am feeling very wired today, the Hep C meds are speedy….

 

Affects of the Medicines

I have taken 2 doses now, of this wonder drug that is likely to evict the Hepatitis C, that's been squatting in my liver for over the past 2 decades. 

This drug has the potential to seriously lengthen my life, which is amazing. 

For the past 2/3 years, I have been reflecting on feelings surrounding my own mortality. On negative days, getting very upset at the thought of not getting to see my 8 yr old daughter grow up, on more positive days upset that I may not enjoy my great-grandchildren as my grandparents have been able to do with my kids…..

The effects of the drugs are strange, the first morning, the motion sickness which has gone today….but I hazy and tripped out  as though I have a hangover but without the headache,  a 'don't care' attitude, I am much slower in my physical movements and my cognitive functions. It takes me longer to read and write. I am left breathless running up the stairs….but I feel positive and upbeat…Yay.

Today I ran a workshop about Herbal First Aid…to be honest I was very worries before I started the meds as to how I would function but it was ace, lovely people sunny day. 

I drank a green tea, then got paranoid that it may be contraindicated,  then laughed a lot at myself for getting paranoid….round and round my head goes!

The biggest thing I notice this evening is that I am wired. Physically exhausted now so early night tonight…..

Treatment commences

I took my first dose of the Direct Acting Anti virals (DAA) last night at 9 pm, it was super emotional I took the 2 small pills into my palm, one bright orange and one white,  both stamped with the letter H. I brain stormed all the words I liked beginning with H, Health, Herbs, Happiness, Harmony….

Hetero (the lab where they were made) Hetero a great H word….


I took the pills and celebrated with a hug with my partner then watched some TV and went to bed about 10.30, I lay in bed, my brain swirling a little with thoughts of all the possible adverse effects, insomnia, rashes, headaches, nausea, digestive complaints…..and thought perhaps I had them all at once so started breathing deeply, full belly breaths and hearing the words 'in', on the inhalation and 'out', on the exhalation cleared my mind and feel asleep. I slept well.

This morning as I made my daughters school packed lunch I felt motion sick and 'wooly' fuzzy around the edges. My movements seemed much slower than normal. It is hard to describe but a little like a hangover without the headache. I made myself a power packed smoothie with avocado, broccoli, carrot, banana, hazelnuts,frozen berries and water for my breakfast. 
And made a decision to be super health conscious with my food which to me means eating a rainbow diet everyday.


As the as has worn on I have noticed that I am short of breath  with simple exertion but this afternoon I felt 'buzzing' much more high energy…I feel like I am on Drugs!!! I guess that I am!

Treatment Day is here…….

Yesterday I potentized, in my own way, the 2 anti viral medication that I am going to be taking for the next 3 months. The first law of the ancient practice of alchemy and pharmacy is 'Make Medicine Beautiful'. 

We humans are visual creatures and the little white plastic pill pots that they arrived in are not particularly attractive to me.

So I created an altar in my bedroom, upon a red and gold cloth that represents earth, blood and wealth to me, bring a representation of each element, Earth, Air, Fire and Water to the altar, primulas (primroses) from my front garden as a calming cooling element, also representing the start of something, an oak rune, a few other herbs, bits and pieces that mean stuff to me and a picture of my supportive, loving family. 

I also picked tarot and oracle cards to help see me through the journey. I pull the Dog, from the Druid Animal Oracle,  a faithful, loyal and trustworthy companion to guide me as a walk down this path and The Hermit (liquorice) from Michael Tierra's Herbal Tarot counselling the trust and patience to follow my own inner light…..


This morning I saw the consultant, who is just back from the international liver conference in Barcelona, so he had heard lots about the generic medicines from Dr Freeman, an Australian Doc who has been running trails with them. My Doc was very happy to see that the meds looked 'real' to him..

I left his office a bit anxious as he found indications of a heart issue with narrowing of one of my valves (mitral stenosis) and also a small mass on my pancreas picked up on an ultra sound…..he has raised another ultra sound in a months time to see if it is growing or not and also an ECG. So I am a wee bit stressed but trying to breath deeply and repeat a positive mantra….

A mate got in touch and quoted a bit of Louise Hay to me, one bit struck a chord, it stated that Liver issues and Hep C can be linked to 'constant complaining'  and I though; You

know what, I do see ways to improve stuff continually and when I am in a restaurant/cafe and food is substandard which has happened quite a bit, I often complain,  getting a free meal, recently I was  in a que at the cimena for ages, I complained, getting free cinema tickets, I quite like complaining especially when I get the free stuff….So an aspect of my character to work with….

So its 9pm and I am gonna take my first dose, I have decided to take them before bed because I read on a forum that others have benefited from evening dosing, so that they could sleep through the headaches and nausea.

I also read that eating something fatty like a yogurt pre dose is helping some folk with gastrointestinal symptoms so I have had some avocado and coconut…fingers crossed..

To be honest I am really scared but excited at the thought I may clear this insidious nasty virus in the next few weeks….wooohooooooo

Generic Medicines Buyers Clubs…..

So as I mentioned in yesterdays post that I have bought generic medicines, through a buyers club similar to the Dallas Buyers Club film…..

I loved that film, filled me with hope for humanity and righteous indignation at the greed of the greedy ones! But never for a moment did I think i would be living the same story…

I have been infected with Hep C for about 20 odd years and known I was infected for 16 years. Being diagnosed as when I was a student of Herbal Medicine at Middlesex university amazingly I had access to a brilliant library so I informed myself as much as I could about; the liver, pharmacology of the medicines on offer via NHS, herbs to support the liver and antivirals, nutrition, virology and on and on…

Interferon with Ribaviron were the 2 medicines used in the hospital setting and they came with high side effects, I balanced my quality of life and symptoms against the adverse effects that the meds may have on me and chose to treat myself with alternative methods.

I went to see Herbalist and Acupuncturist John Tindall at the Yuan Clinic as he set himself up as a specialist in HepC and HIV and I learned a lot about Traditional Chinese Medicine through that treatment but after a few months decided I wanted to use the herbs growing in my garden over ones from China. So for years have treated myself with herbal remedies, yoga and nutrition.

3 years ago I started displaying symptoms of rashes and increased fatigue so I decided to go back to the consultants that I had kept away from for years, I saw a local hepatologist and over the last 3 years found out that my liver enzymes are raised and that I have certain markers that concern the doctors.

Hep C is broken down into various genotypes 1,2,3,4,5,6, etc and I am genotype 3a apparently according to current research the most aggressive acting in the body with patients having a higher incidence of liver cancers.

In March 2016  new medicines became available in Great Britain, this new medicines are call Direct Acting Anti-virals (DAA)  and there are few of them that are prescribed in combinations depending on the patients genotype. These new meds have 95% cure rates and could potentially rid the globe of this insidious virus that kills more people than malaria. Some studies show that over 5% of the globes population know they are infected with the virus. So what is the issue?

       Gilead Pharmaceutical who owns the patent are charging ridiculous amounts for the drug, charging the NHS £35 grand per persons treatment, which means here in the UK only a fraction of folks with the virus can get treatment.

A few days ago I got a friend request on FaceBook from someone I was on a Hep C forum with,
David Cowley, he wrote to me offering help with sourcing the medicines. We had a few FB friends in common and he seemed like a nice person, we struck up a dialogue. He explained to me that he had connections in India and could source genuine generic medicine from a pharmaceutical company out there for £1050 and it could be with me in 10-14days.

How strange was this for me? A guys on the internet offering to help me source the meds…
All kinds of thoughts flowed through my mind! But we chatted online and on the phone and I came to realise he could really help me.

I made an appointment with a private Hepatologist in the Royal Free Hospital and learnt that I would be potentially waiting 2-3 years on the NHS so I was advised to get the meds from India asap…..Right now my liver isn't too badly damaged with a low level of fibrosis 6.5 on a Fibroscan which means that the new drugs have a far greater chance of working well.


I sent David the money that afternoon and received a tracking number that night…..

There are thousand of people in the UK infected with the illness that are receiving adequate medical care because of the greed of big pharma who are trying their hardest to stop this supply change themselves.

Doctors in the NHS are refusing to monitor people taking these generic medicines which is disgusting as we are saving the NHS money, thousands and thousands of pounds!

I am going to try and blog daily about my progress with this treatment, I am scared because I haven't taken any type of chemical medicine for decades so I do not know how I shall feel emotionally, physically and spiritually but I have a supportive network of friends and family and also I have created TIME for myself to properly healing with these drugs. I am also unsure about using herbs to support me as symptoms arise, because of the possibilities of impeding the medicine….all things to explore

Now to find out exactly how this medicine is working and the reality of using herbs alongside the treatment……google tastiqueness

It is time to Slay this Dragon

So it has come to the time where I am viewing my pet dragon, the one that lives in my liver as a squatter, whom I no longer want to house. This is a hugh philosophical conundrum for me as an ex-squatter and lover of dragons! A hugh philosophical conundrum as a holistic health advocator and herbalist, I believe in the theory of health that states, our individual 'terrain' houses ill health and lets viruses and other diseases live within us…

So why haven't I been able to clear this virus with my knowledge of herbs and nutrition,  yoga and spiritual per suits? Why am I turning to pharmacological compounds?




These are all questions I am going to explore with this blog.

I hope that this blog helps others out there with journeying through health and life.

I was diagnoised with Hepatitis C in 2001, I had been feeling low with lots of respiratory infections and general malaise so I went for an HIV test at my local surgery. When the results came I was over joyed that I was HIV negative and I had never heard of Hepatitis C so had no idea of what it meant..

I went home to my flat that I shared with my 4 year old son and googled Hepatitis C, the first page that came up was an obituary to someones wife who had died from the disease, I felt immediately freaked out. I joined some forums online and talking to the community, listening to many peoples woos about their symptoms and the horrors of the treatment of the time which was interferon based, scared me even more. 

Today is April 14^th 2016 and 5 days ago I sent £1050 to a man I met on the internet to supply me with generic medicine from India, I have felt very odd since I made the decision to buy the medicines…The NHS cannot offer me these medicines because the pharmaceutical company who has patented them are selling them for a highly inflated price to the NHS about £35 grand per treatment, these medicines are being seen to show 95% cure rates with minimal side effects. My consultant basically advised me to 'get a friend in India' where the generic medicines are being made and sold for a fraction of that crazy price….So I have been doing hours of scouring the internet reading about companies in India and hours of thinking through all the  possibilities and options that surround being part of something akin to 
THE DALLAS BUYERS CLUB! 

Life feels like a film

I am a university trained in phytotherapy and complimentary health sciences  (medical training in a hospital setting) with many years of clinical practice. Through my studies I decided to  reject the interferon based treatments and liver biopsy offered to me instead treating myself with nutritional and herbal support for the past 15 years.

The herbs I have used over the years include Milk thistle, hypericum(st. johns wort), calendula, shisandra, bupleurum, elder berries and turmeric, certain medicinal mushrooms, and various other supplements…

I am genotype 3a and have a level of 6 on the fibroscan, over the last 2 years my symptoms of rashes and fatigue have increased and I feel that the herbs and diet alone are not clearing my virus and I do not know if they will, perhaps if I went and lived up a mountain and drank spring water, meditated and had massage daily alongside the herbs it would clear but I do not have the luxury of doing that at this time. 

So I have made the decision to take the generic medicine, part of my mind is in turmoil because I personally do not like the 'magic bullet' approach of a lot of orthodox medicine but I feel that it is my best bet at preventing liver cancer. I believe that herbs and other lifestyle options can be integrated after taking the medical chemical compounds and thus my treatment will be Whole. 

Today we checked the fedex tracking numbers and it said they were in Enfield, arrived from Charles De Gaul this morning, from Dubai yesterday ….

The Fedex man got a shock when he knocked and I burst into tears, thanking him for bringing me the medicines that may well save my life!

I have been reading about the new meds particularly Sofosvir & Daclatasvir as these are the ones that I am going to be taking. My understanding so far is that the Sov blocks the action of an enzyme called ‘NS5B RNA-dependent RNA polymerase’ and Dak blocks the action of a protein in the hepatitis C virus called NS5A which is essential for the virus to multiply.