Still on that boat…

Strawberry blonde in a dizzy world!

Toxic mould – scary or what?

July17

I had a practitioner a couple of years ago who asked me if I had any mould in my home. How vary dare she? Just kidding, do you think I had energy for cleaning especially when I had my mum armed with a Henry Hoover living just down the road? The Doctor was convinced that exposure to mould can cause many neurological symptoms and even prevent recovery from illnesses like Lyme Disease. Where as I was convinced she was a bit nuts. I totally dismissed it, just another thing that sounds crazy and something I really didn’t want to have to deal with.

I’d come across people in Lyme support groups online discussing mould. They had spent thousands, having their homes professionally assessed and mould cleared if they found it. People were having to move, throw away soft furnishings and heaven forbid their clothes! All that hassle and throwing away all my clothes – no thanks, head firmly in the sand.

Over the following months this idea that mould may be causing me problems niggled at me. My symptoms were getting worse and I didn’t know why. Maybe I should check this out? I half heartedly bought some basic agar plates from Amazon and conducted my own scientific study. They obviously came back showing ‘stuff’ but I didn’t know what I was looking at even after hours of google searching. I told myself it was just normal, we don’t live in a sterile environment (certainly not in my house!) so something would grow. I could not afford to get my home tested and I certainly couldn’t afford to have mould removed or to move out. I was so exhausted I couldn’t even bare to think of having to move. At this time my anxiety was through the roof and I couldn’t deal with anything even slightly stressful. It was far easier to put my head back into the sand (well at least there wasn’t any bloody mould in there!)

After I left the UK for treatment in America my mother cleaned my home. I’m very lucky, I know! However, she found mould behind the curtains. I should be ashamed that I hadn’t even noticed but I’m not. It sounds crazy but I’d have loved to have had the energy to clean. There was also water damage behind the shower – a perfect storm for mould to grow.

I went to America still pretty much in denial of this crazy fad mould illness. I had my urine tested for mould mycotoxins and surprise surprise it came back with elevated gliotoxin (which is released from several fungi). Once more I was horrified and pleased at the same time. Something we can fix but why hadn’t I listened to the advice I was given months ago?

There is a lot of symptom crossover with Lyme and Adrenal fatigue just to make diagnosis that little bit more complicated – just what we need! If you are suffering from mould toxicity there are so many symptoms that it can be responsible for and here are just a few that are relevant to me:

  • Headaches and migraines
  • Brain fog/memory changes/ change in cognition
  • Anxiety/depression/irritability
  • Chronic fatigue syndrome
  • Fibromyalgia
  • Neurological dysfunction
  • Hormone changes

The mould effects your white blood cells and is therefore not uncommon to be seen with Lyme disease. From what I have read it seems to be a bit of a chicken and egg situation. Does the mould cause a weakened immune system so that Lyme can take hold or is it the other way around? All I know is is that its important to get rid of it.

Initially I was treated with so many herbs and tinctures I couldn’t even name one of them for you. This was during my ‘Must Attack My Body as Hard as I Can Whilst Withdrawing From Highly Addictive Drugs’ sensible phase. The ozone therapy that I am now having can also kill mould (as well as the Lyme and viruses). It’s truly awesome stuff isn’t it? I wonder if it can cure world hunger too? I have been taking cholestyramine which is used for people with high cholesterol (something I clearly don’t have a problem with, I haven’t seen so much as a doughnut in years!). It is used off licence to basically mop up all the mould toxins when you kill it off. I’m hopefully being retested soon and that the resolution of the mould will help me on the way to my recovery. It will be nice to take one problem off my list of illnesses.

I’m also managing it by having a mould free diet on top of my normal diet. Things like nuts, alcohol, coffee, chocolate – so nothing anyone would ever miss really. I eat loads of fresh fruit and vegetables, nothing processed, even things as harmless sounding as tomato paste can trigger someone with this illness. I also diffuse essential oils in my room, alternating between Oil of Thieves, Bergamot and Rosemary to keep the air as clean as possible. You should always check your ventilation and air conditioning units. You could actually be living in a mouldy environment where one person is really sick whilst the others feel no ill effect. Apparently up to 24% of people have an abnormal gene that prevents you from breaking down the toxins that the mould creates.

 

 

For now, I’m still treating mould as once again there is no quick fix. I’m taking it one day at a time and trying to get enjoyment where I can. This was July 4th – I’d passed out due to evil vertigo about an hour before this picture was taken but I got BACK UP again! For now that is all I can do.



Oh, and if you ask me about giving away my clothes now. Please, please, please just take them all if it will make me feel better!

What on earth is Adrenal Fatigue?

July3

Well, Adrenal fatigue is part of the reason why I spend most of my time feeling like I’m wading through treacle!

 

(Glastonbury 2007 wading through mud to see Amy Winehouse was much easier and more fun!)

A good example of adrenal fatigue is me trying to write this blog post. I open my laptop feeling ok, write a few words and then all of a sudden, I feel heavy and can’t think straight. I have no other option but to go back to bed to sleep or watch back to back episodes of Dynasty on Netflix – don’t judge me! It’s a whole new level of exhaustion so making sense of a film plot is never going to happen. Besides, who doesn’t love big hair, big shoulder pads and people coming back from the dead when they are feeling down? Anyway, my attempt at writing (if that’s what we are calling it) is repeated over and over until days (in this case weeks) later I finally get something that I’m vaguely happy enough to post. I write a lot of rubbish that doesn’t quite meet the cut believe it or not!

Fatigue is a strong enough word to explain it. It’s not just tiredness. It is an all-encompassing heaviness that leaves you unable to do anything but rest and sleep. However, it doesn’t matter how much rest you get, you never wake up feeling refreshed. Even if I have an amazing nights rest within half hour of waking up, I can be forced to go back to bed again. There isn’t really a choice in the matter.

You get perfectly sensible suggestions from people that mean well. like ‘try to get up and make yourself do something’’ or  ‘sitting around all day never does anyone any good’ (a direct quote from a judge at my benefits hearing!) or ‘try to snap out of it’. I’d love nothing more but these suggestions don’t work during a crash from adrenal fatigue. The more I push the harder it pushes back. It’s not depression or laziness or lethargy. It is like when you have flu but every single day. In the morning my activity tracker can tell me I’ve had a great nights sleep but my body thinks otherwise. I have to fight the urge not to launch said activity tracker across the room. During these episodes I can however, get bursts of energy in the evening – great, just when I need to start winding down to go to sleep.

So, what exactly is Adrenal Fatigue? Well there are lots of theories – nothing is simple with chronic illness, right? This is my take on it. It generally seems to start after a chronic infection or extended period of stress. With chronic illness you’re trying to keep going and going when your body is struggling to just get through the day. Pushing and pushing all the time. During this time you are in flight or fight response as this is how your body responds to stress and survives. Your adrenals are small glands that sit on top of your kidneys, they pump out hormones in response to messages from your brain. I’ll go on to explain how this messaging system works and how Lyme disrupts it in a future post as this is far too much science for one day! This means that your adrenal glands are pushing out lots of cortisol which is your stress hormone. This effects your blood pressure, heart rate, immune system and your response to stress. In evolutionary terms your body thinks that you are being chased by a Sabartooth tiger but FOREVER!

So, with an illness or stressor that lasts for a long time your body can not sustain this survival mechanism. Your adrenals essentially burn themselves out after working so hard to keep up. Consequently, hardly any cortisol is then produced and you find it hard to function. It’s like a car that has been running on fumes for such a long time that eventually you just totally knacker the engine. I have been driving my car like I’m Lewis Hamilton going around Monaco when really I should be doing ‘Grandma Sunday Driving’. My problems is is that I still think I’m a sports car when I’m just one step away from the scrap heap! Ok, Ok I’ll stop with the car analogies!

So, what do I have to do to try and fix this? Reducing stress is really important as it’s just putting more pressure on your over worked adrenal glands to produce more cortisol. You can do this with deep breathing, guided meditations or yoga if you have the energy to do it of course. When I do have a little energy I do try to use it, but not all of it. Just light exercise like a short walk, some yoga or even just cooking myself a meal. The key is to keep it light and I’m terrible at getting this balance right. So yes, people are right when they suggest a walk but you have to listen to your body and do what you think is right for you. Encouragement is great but you have to learn to stand up for yourself if you’re not feeling it. Only you can know how you are feeling.

A good nights sleep is important. I know I can still feel terrible after even a great nights sleep but getting your body in a good sleep routine can really help. Your circadian rhythm (how your body knows when its time to go to bed or get up) is linked to your cortisol levels. You’re supposed to have a lot in the morning to keep you going and then it dips in the evening so that you sleep. So trying to restore this can really help.

I eat a healthy diet with no sugar, dairy or processed foods but plenty of fruit and vegetables and I never have caffeine. I do feel like I need a double expresso every ten minutes but I avoid caffeine as it’s adding more stress and continuing this vicious cycle.

There are loads of supplements that claim to support your adrenals. I take Ashwangdha, phospholipid complex, magnesium and cut cumin. However, I needed a bit of extra help – my cortisol levels had flat lined! It is controversial (yay another thing the medical community can’t agree on) but I have been put on very low dose steroids. Some doctors say that steroids should be avoided during an infection but a really low dose is not immune modulating so should not have a negative effect. The concern seems to be that if you give lots of steroids your adrenals then stop producing their own but with a very small amount this should not be happen. My cortisol level was so low my Doctor wondered how I functioned – well I wasn’t really. I know just replacing it doesn’t address the problem, but It can help with the symptoms whilst we work out the rest. I have been taking them for a few weeks and although I have fatigue it isn’t that crushing fatigue that you can’t function at all with.

So, my fatigue has improved and I was doing much better for a few weeks. Unfortunately, now my vertigo has come back with a vengeance. Little things I was starting to take for granted like getting to yoga on my own have once again become tricky. If I even go at all. I’m having to spend a lot of my time laying flat on my bed in the dark trying to get it to settle. I’m hoping this is just a blip and that I will start to improve again. Understandably there is that worry that I won’t improve – my mind in over drive that is not helped at all by too many hours laying flat on my bed in the dark…

At least I have had those periods of improvement. Glimpses of the life I so badly want back!

I will get back to that farmers market and I may even figure out how to control the ‘Houston Humidity Hair!’. I’ve done it once I can do it again.

Is this the winning combination?

June11

So, we went right back to the drawing board as we have been trying so many new things and not really getting anywhere. I had pretty much every test under the sun done. Each time I dismissed the test as unnecessary. I can’t possibly have that? Then it would turn out that it was quite key in the management of my illness. Left untreated I would never get better. It’s like lots of pieces of the jigsaw puzzle finally coming together.

It’s hardly surprising that other medical conditions have now come up. I have been sick for so long my body has just turned to mush and given up fighting. Everything is out of sync and there is a total riot going on and it all needs to be sorted.

I’m almost out of fingers and toes to count all of the things that have now been found to be wrong with me – or as Mary and Andrew would say ‘what we now know we need to fix”. Love them!

1. Lyme (obviously)

2. Bartonella

3. Mould toxicity

4. Hormonal imbalances

5. Candida

5. MARCoNS

7. Hypothyroid

8. Adrenal fatigue

I’ll go into more details of each in a later entries as just remembering all of them has used up most of my brain power which is fairly limited at the best of times. It has genuinely shocked me making this list as that’s a lot! No wonder my poor body has been struggling. Just having one of those problems could make you feel rubbish and I’ve got a pretty full dance card!

My treatment is far less aggressive than it was. The old me would be worried thinking that the harder you hit the bugs the quicker I get my life back. The new me knows better. When I batter my body with treatment I do just that, batter my body.

 

I’m now doing ten pass ozone therapy once per month. This stuff is amazing, it gives me about ten times more energy than I normally have and also kills all the crap that’s in my blood. It’s like magic and I wish everyone had it available to them but it’s rare to find and expensive. I’m so fortunate that Andrew makes the eight hour (plus) round trip every week (now its once a month thank goodness!). I sleep all the way there and sing all the way back – he deserves a medal for just listening to my singing let alone the rest!

I’m addressing all the hormonal imbalances. Pretty much everything we tested came back too low so everything is now being replaced. Simples.

I’m having IV NAD (nicotinamide adenine dinucleotide) twice per week. Studies have shown really promising results of using NAD for helping with chronic fatigue syndrome. It also helps with drug withdrawal and aging (awesome side effect or what?!?). When I’m tired my symptoms are always really bad so although it may not ‘cure’ me as such it will help to manage my symptoms. However, my doctor has a theory that my body having more energy gives my brain more of a chance to repair itself. The NAD works by producing ATP (check out the Kreb cycle if you’re in geek mode) which is the energy that your mitochondria (your bodies batteries) make to keep your body going. It’s a relatively new therapy and once again I’m extremely fortunate to be able to try it.

Then supportive therapies:

  • Red light therapy
  • Infra red sauna,
  • Light exercise – mainly yoga or funny mini workouts that Andrew finds on the internet. They are so hilarious – in particular the demonstrations, so you can add ‘laughter therapy’ to the list!
  • Meditation
  • Epson Salt baths
  • Juicing
  • Diet – of course no disease management would be comlete without a good ‘ol diet restriction!

I’m now on a diet that I enjoy. Yes another one! I’ve become a genius at creating meals out of the most random ingredients ever  – move over Deliciously Ella. Although, I’ll never have the ‘looking great in an apron’ thing nailed. I look more like I’ve been in an explosion at a paint factory! Now I have no gluten, grains, dairy, sugar, processed foods, cheeses, chocolate, coffee and other items that could contain mould like tomato paste?!? It’s a bit of a minefield but I think I’m getting there. Oh and if you think that’s restrictive check out the candida diet. I did the candida diet for months and it was miserable. Hats off to anyone who had to do that long term.

So, I’m now really hoping that this more gentle approach is the way to go. I still have a lot of prescription medications that I need to get off, it’s not fun but it has to be done.

So far do good though. I’ve gone from being unable to stand Christmas Day to now frequently doing yoga classes (even playing in the fountains after one!), building up my walking and meeting new people. I even have an Uber account which is so exciting when you’ve been so dependent on others for so long. It wouldn’t have been safe a couple of months ago as you would not of been able to guarantee that I could stand up by the time I’d get to the destination. Although, if I have one more driver ask me about Brexit I may cry.

I’m being cautiously optimistic. It’s such a different route to everything I’ve tried before and that’s not a bad idea.

I have an amazing team behind me. Mandary (Mary and Andrew) who I can’t even put into words how grateful I am to them. They have given me this amazing chance to get my life back. I have a great Dr treating my long list of problems, a lovely family practice that not only give me my NAD infusions but emotional support (and a constant flow of ideas that they have researched) and of course all my friends and family.

Bye bye Lyme!

Shall we have a recap?

June2

OK, this has been going on for so long even I’m confused about it all. Lets have a mini (well as mini as almost a decade can be!) recap of the last few years and also share what I’ve been going through over the past couple of months.

So this is how it all started:

I was a 30-year-old fit and healthy woman. I had a job I had worked very hard for and loved, a relationship and my plans for the future were exciting. Then 22nd of June 2010 I got sick. Yes, I remember that day as it was the day my life would change forever.

I had been on a sailing holiday in Turkey where I had what felt like flu at the end of the week, covered in insect bites from running around barefoot on the islands we’d stopped at. On the last day I just sat drinking coffee trying to ‘snap out of it’ as I was so tired, achy, foggy and had vertigo. Everyone else went shopping – now you know I must have felt ill to not go shopping!

On my return home my balance and fatigue got worse and worse and I felt like I was on a really rocky boat all the time – hence the name of this blog. It was initially thought to be viral, then months later migraine and years later Lyme disease. However, when I didn’t respond to traditional treatment (four weeks of antibiotics) I was then told I didn’t have Lyme as the antibiotics I’d been on would kill ANYTHING – well they had that so wrong! After seeing so many specialists I was eventually told I just needed Physiotherapy (I’d done that for years) and even I started to wonder if it was all in me head! I was distraught, spending my life in a dark room at my parents’ house. The loss was overwhelming – my independence, financial security, home, job and career, friends and my relationship (that lasted all of ten minutes!). I was torturing myself on Facebook watching my friends get promotions, married, children etc. I was happy for them, I’d never want my friends to be as unhappy as I was, but I felt my life was on pause and I was being left behind. I was lucky if I could get out and buy myself a pint of milk let alone a house!

Facebook can be fun, research suggests, except when it stirs up envy or depression.

They say you soon find out your friends are and that’s very true. When I first got ill I was flooded with cards, flowers and visits from people that wanted to help. As time went on this became less and less. I soon found I only had a handful of friends who I could truly depend on. People don’t realise that you actually need more support years down the line when you are struggling after so many knocks. I then started to not be invited to things, the reason being ‘we knew you were too ill so we didn’t want to upset you’. Not realising that being left out felt far worse. Friends would be cross if I cancelled last minute not understanding that I wanted to be there, the last place I wanted to be was in bed but the crushing fatigue was so bad the thought of just getting in the shower totally exhausted me.

My life is a total roller-coaster. I have tried so many treatments for Lyme and co-infections over the years. I have had periods where it felt like a treatment was working and I’d get so excited and could imagine having a future again only to be knocked on my ass again a few days or weeks later. I pick myself up over and over and over. I think I’ve been on every antibiotic known to man, several anti-epileptic drugs on doses high enough to knock out a rhino not to mention the Herx (die off) reactions and side effects of all the drugs.

So now? Well I’m trying the alternative route and I’m still having knocks. This isn’t a shock at all as this has been my life for almost a decade. I know that there is no quick fix. It feels like one step forward and two steps back a lot of the time. I have discovered that the most important things in life are your health, family and friends. I have learnt to hold on to the people that pick you up over and over again, always make sure you explain to people how you feel (they are not mind readers) and have patience with them as they will never truly ‘get it’ but just wanting to understand means the world. Oh, and people that bring you down have to be kicked to the curb!

 

I’m now onto new and exciting things being supported by an elite squad of straight talking, smart, practical, hilariously funny, positive and caring friends aka Mandrary (Mary and Andrew) – Lyme doesn’t stand a chance! Watch this space 🙂

Up and Down

March25

Well, the last couple of weeks I’ve had a couple of good days followed by a couple of bad days. it’s so frustrating! On a good day I have managed a yoga class or a short walk and cooked myself dinner. On a ‘bad’ day I sleep all day or binge watch Netflix  (I definitely get my moneys worth out of that subscription!).

So, this is where the Spoon Theory comes in. it’s a great way to explain how you managed to do something one day and look fine, but then spend the next few days paying for it – with your spoons.

Basically a person with a chronic illness has 12 spoons of energy per day. Each activity that you do requires a certain amount of spoons. For example getting up and taking a shower could take 3 spoons, going out for dinner could take 6. So if at the end of the day you have used more than your 12 spoons, the next day will be spent making up for the extra spoons that you have used.

It’s a very good way of explaining to people and also a reminder to ourselves. I’m clearly using too many spoons up and then having to rest the next day. I seriously need to balance out my usage as I’m up and down like a yo-yo. The problem is that I know I need to push the envelope as if I don’t try to find my limits I’ll never know what I can and can’t do. My tendency is to push my limits way to far. Then I spend the next day paying for it not only physically but mentally. I get so mad at myself as I generally know when I’ve gone to far and I just can’t stop myself. I’m currently doing ten pass ozone and I have to say it definitely gives me more spoons which is awesome! I even managed to go to the mall one day – it was rather funny that the picture said ‘I STAND’ once I cropped it, after spending so much of the last few months laying down!



So, if you have a loved one with a chronic illness a wonderful gift is spoons. So cook a dinner for them, put out the bins or pick up some shopping. Then hopefully they will have some spoons left over to go for a coffee with you.

Starting AGAIN again!

March6

Well the past few months have been a total nightmare to put it mildly and I’ll be very glad to put it all behind me. Between starting so many new things and trying to come off old things my poor dizzy brain didn’t know if it was coming or going. The IV silver treatment was tough causing massive herx (die-off) reactions. Two hours after the treatment I would routinely get a chill, start to shake so much my body ached then get a temperature and a banging headache which would then clear. It was pretty scary the first time and poor Mary had to deal with a hysterical wreck on the floor – good job she’s calm in a crisis! I’d had herx reactions before but never as severe as this. Over time it became easier as I knew what was happening and that it would eventually pass. If I detoxed like a ninja I could generally nip them in the bud. Epson salt baths were a life saver.

The herx reactions also made my normal symptoms worse so all in all it was a bit of a terrible time. Having to sit on the floor to be able to make a cup of tea as I was too dizzy and ‘out of it’ to stand had become the norm. You really do take these things for granted, I mean making a cup of tea for goodness sake?!?

I returned home to England in December and stayed with my mother for a month. One of the drugs that I was on (Gabapentin – evil, evil stuff!) was likely making my symptoms worse as I was on such a high dose for a number of years. Oh the withdrawal symptoms from that. I can honestly say that has been the hardest thing I have ever had to do in my life and I have a new found respect for anyone trying to get off anything be it gabapentin, benzodiazepines, opioids hell even chocolate or coffee.

I would drop the dose down a fraction and two days later like clock work the shakes, anxiety, insomnia, nausea, migraines would kick in and then the following week my vertigo would get so extreme I could not stand. I had to repeat that cycle over and over again for months and it felt like it would never end. I got out the bath once and had no idea where I was or what I was doing – scary stuff. Thank goodness I had such an amazing support network around me. Mary and Andrew making me laugh daily, helping me to get through it all and managing my crazy dietary requirements. Poor Andrew has pretty much travelled the length and breadth of Texas (which aint exactly small!) to try and find rare and wonderful things that I could actually eat – sea kelp noodles exist, who knew?

It was so important to let them all know what I was doing, what was happening and that me crying my eyes out just wanting to die was entirely normal. My mother was amazing too and also struggled with my diet. When she was going shopping she asked me what I can’t have, I had such a long list she re phrased it to ‘well, what can you actually eat?’. On Christmas day I didn’t even get out of bed. Everything felt impossible.

That was over two months ago and I’m finally free of that awful Gabapentin woo hoo! Unfortunately the clinic I was going to closed as the doctor retired but in hindsight (isn’t that a wonderful thing?) it was too much for me, my body was just not happy at all. I pushed myself way to far in my desperation to get well again.

So, now what I hear you ask? Yes, here I am again starting over back in America. I’ve now backed off big time with all the supplements and herbal tinctures and just eating a balanced diet – I was becoming (and I still am) rather obsessed with it. As I was diagnosed with mould toxicity it’s more important that I avoid things like peanuts, mushrooms, canned tomatoes, alcohol and chocolate. Although i do have to admit to jumping on the celery juice band waggon!

I’m seeing ANOTHER doctor where we are using ten pass ozone which I’d never heard of. It’s like the ozone that a described in a previous post just much much stronger. Its very early days but I definitely feel like I’m getting some energy back. Whether that’s because I’m off so much prescription medication or the alternative medicine I guess only time will tell. Something has to work one day – I’ll never settle for a life spent in bed that’s for sure. There is no way the team behind me would allow that anyway!

My veins are all a bit buggered up from all the silver treatment, apparently that happens to some people so we are having some trouble getting a vein but where there’s a will there is a way.

Ozone therapy

October29

Well the only thing I knew about the ozone was that we were slowly destroying it with hairspray causing holes and hence global warming. It turns out that it has other uses. It seems it can be rather useful in the treatment of Lyme Disease too. Now, I’ve done a lot of therapies over the years. I think my low point was the ‘look-at-a-disco-ball-until-you-pass-out’ therapy’ (I only wish I were joking!). This one I was pretty nervous about – it was rather far out. I mean beyond the ozone layer ‘far out’!

Ok the science bit again. This therapy involves taking about an arm full of blood and then putting it into a bottle and essentially transfusing the blood back into yourself. The difference is is that ozone is introduced into the blood through a machine that it passes through. Now ozone is just like oxygen but souped-up by having an extra oxygen atom. This means that your blood that is now being put back in your body is highly oxygenated. If you have seen previous posts you will have seen entries on the hyperbaric oxygen chamber. Now this uses the same principle. That the Lyme hates and can not thrive in a highly oxygenated environment. So this therapy is also used in cancer and MS patients too.



Unfortunately I had rather a wobble earlier on in the week. I’d been dong the IV silver for over a week and I thought I was doing really well. I felt really positive about the new treatments and what potential benefits I could gain from them. In fact I was feeling more hopeful than I had in quite some time. Then my world came crashing down around me – my blood results showed that my liver wasn’t quite as impressed with the silver therapy as I was.

I feel so stupid now but I totally fell apart for the entire day.  I must have seemed like such a drama queen but it was the massive let down once again, the worry about my visa running out soon and the guilt of my amazing friends having to fund this new venture for even longer. like my body letting me down was then letting them down. I have been here so many times before, my body letting me down over and over it just felt like another treatment plan doomed to failure. I am so so thankful to the nurse there who didn’t think I was bonkers (well if he did he hid it well!). He took the time to talk it all through with me and actually that time really paid off as one of the medications I had been taking may have caused the problem.

I had to take some time off from the silver treatment and I felt like such a failure. I detoxed like crazy and looked up every remedy, procedure even spell I could possibly do to get my liver back playing ball again. By some miracle it worked like a charm, so much so that I was able to re start the silver treatment the following week. This was a real wakeup call for me. I had been blaming and hating my body so much and that was never going to get me anywhere. I guess it’s like teaching someone who is dyslexic. The tools are right there it’s just that a little more patience or a slightly different approach is needed. Beating up the student would never achieve anything positive. My body just needed a little more TLC (and patience) and I was back on track. Hating our bodies for giving up on us is never going to get us anywhere.

So, I’ve finally learnt to be a bit kinder to my body.

The Rife machine

October20

Well, this is a therapy that I had come across a few times over my years of Google searching and kind of poo poo’d it as hocus pocus. I mean I’m all for trying out alternative therapies but seriously? This guy from almost a century ago curing cancer? How is this not big news if it were true?

However, I’d agreed to go the holistic route and in for a penny in for a pound. It was invented by Royal Rife in the 1930’s and he speculated that everything vibrates at it’s own specific frequency. On the basis that everything has it’s own resonant frequency he developed a machine that generates resonance waves that can target a specific pathogen. So some frequencies target cancer cells were as others target pathogens such a Lyme.

So, I couldn’t really turn down the opportunity to try it at the clinic where I’m being treated. I have to say I was pretty intrigued. You sit under what feels like a neon light when the bulb needs changing (hmm maybe it did?). The machine is tuned into the frequency of the Lyme and it’s co-infections and you lay there until your time is up. Laying down and not having any invasive procedures or drugs with nasty side effects was a rather novel experience for me. It was quite enjoyable, so much so that I fell asleep. So I don’t know what I was nervous about. There was no chance of this therapy turning me into a blue Smurf like the silver…or was there?

I was able to do the silver treatment at the same time as the Rife. Multi tasking on treating Lyme sounds like a good idea to me. I was such a good girl I got a matching bandage!

I’m still totally exhausted and spend my time that I’m not asleep or at the clinic trying to detox as much as possible. I’ve not seen much of America apart from the clinic and two isles of WholeFoods (now that was a disaster!) so I’m hoping that I’ll manage to get out and about a bit more at some point.  You never know with this illness. It’s all been a real learning curve that’s for sure!

So the new treatment begins…again

October13

Well, I’ve started the first part of the protocol that involves intravenous silver. Yes you heard right. When the Dr said IV silver I was thinking more like jewellery shopping. As my previous post alluded too he’s kind of eccentric so I did have to do a Google search before I signed up to it. I mean, I don’t want to end up looking like a Smurf – yes that is a possible side effect (well, a tiny exaggeration it can make you look a bit blue so same thing really!).

It’s actually very interesting. The Lyme spirichete acts very much like syphilis spiralling into your tissues. Back in the olden days (I’m talking pre iPhones, shell suits and even flares!) they used to use it to treat syphilis. In fact they did turn blue and have silver teeth – it was nicknamed ‘silver smile syphilis’!

So the silver runs directly into my blood and then penetrates deep into the tissues where the little buggers are hiding out causing me all this grief.

So there is logic behind the treatment. I’m slowly increasing the dose over the coming weeks. That’s because, just like antibiotics, it can cause a herx (die off reaction) so I need to be able to clear the toxins otherwise they will build up and make me very sick. The flip side is that it does not disturb the good bacteria in my gut, giving it a well earned rest after all the pounding I’ve given it with antibiotics.

The Welsh CTF work out

October13

Well, courtesy of my ‘fairy’ step mother and her lovely husband I am now on a new journey and it’s exciting. The treatment is VERY different but lets face it, the conventional treatment has got me no where, well, just much worse than when I started. The vertigo and fatigue has been so so bad. The boat is just about settling down but only when I’m really well rested and not moving much. I had one of my ‘episodes’ when I tried to leave the house and a day where I was hanging onto my bed for dear life as the rocking was so bad I was trying not to be sick. Not fun!

It’s a twelve week course (not quite sure what to do when my visa runs out) and I started this week. It wasn’t the best of starts when the doctor running the clinic seemed a bit barmy. We now all refer to him as Dr Nutty. It seems like that was an unfair first impression he’s just a doctor with zero people skills, has no regard for patient confidentiality and doesn’t like to be asked questions. Sounds terrible I know but I’ve tried all the other kinds of doctors and that’s not worked for me. I don’t need someone to hold my hand I need someone to get me better. Time for a 180!

Please, please let this work:

I can assure you that is not a smile:

To prepare for my upcoming fun and games Andrew has started me on a ‘light’ Lyme exercise regime. He has researched the matter and found that one day of light resistance exercised and the next day of absolute rest is the way to go. Light ha! It’s called the ‘Cut To F**k Workout’ (patent pending and not my name for it!). Damian the Pilates instructor just about killed me. ‘Light’ my arse. I could hardly lift up my arms the next day. I knew I was in trouble when I woke up and had difficulties brushing my teeth. Don’t ask me what it was like trying to take my jumper off at the end of the day – almost had to sleep in the bloody thing!



It’s been really fun though and I clearly needed it. The exercise should get the lymphatic system flowing and allow it to get rid of all the nasty bugs and break down products that are in my body. So, a new chapter in my Lyme journey. Here goes nothing, well if my body can still get me to the clinic that is 😉

 

« Older Entries

Who am I?

Was – independent, intelligent (with plenty of dizzy moments), successful, busy, funny (depending on how much Prosecco I and the people around me had!), quite stressed out but overall happy, without even realising how lucky I was.

Now  – ? just a mess really! I was diagnosed with Migraine Associated Vertigo (MAV) eight years ago when my life changed dramatically. It’s a variant of migraine that means I feel dizzy and tired nearly all of the time. If I try and do anything ‘normal’ this sparks of vertigo which gradually gets worse and worse until I pass out unless I lie down for hours, sometimes days. What this means is I spend 90% of my time in bed in a quiet dark room. Normal activities like shopping, walking, going anywhere bright or busy, the cinema even visiting friends who have patterned wallpaper or a gravel drive is a nightmare!

I’m continually trying new medications, all of them with quite nasty side effects (worsening of vertigo, weight loss, hair loss and sense of humour loss to name but a few) to try and find the magic one that will work for me. Fingers crossed the one I’m on now will work, time will tell.

A good friend set up this website so I could become a ginger whinger. No I’m kidding, so people can understand what I’m going through and maybe it would help me to have a bit of a rant. I have quite a dark sense of humour, I think that’s the only reason I haven’t gone completely bonkers! I clearly don’t have the most exciting of lives but I live in a small village with some entertaining characters and I’m always having blond moments (I blame the meds but I’ve always been a bit dappy!). Who knows I may even get better, and I can assure you life will be filled with amazing adventures then!

Scrap that! After zillions of Consultants all saying that they know what’s wrong with me and that they can get me better. Endless drugs and procedures I was finally Diagnosed with Chronic Lyme which was great – until I find out that nobody in the UK has a clue how to treat it. That complicates things some what 😉

thtj29s3w2