Still on that boat…

Strawberry blonde in a dizzy world!

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 😉

 

Pretty chilly in Houston

October6

So, the ‘crazy because I’m totally desperate’ treatments begin. Bring it all on – I’ll do anything!

I have been trying whole body cryotherapy. The theory behind the whole body cryotherapy is that your body basically thinks it’s dying so the flight, freeze (ha ha) or fight response kicks in. So the blood vessels vasoconstrict (become narrower in diameter) to save the blood for your major organs which can help your body to repair damage. Effectively like having an ice bath after an intense workout but colder, much colder! In Lyme the bugs have antigens which cause the release of cytokines that cause inflammation within the body. Some of the leading experts think that the cryotherapy stops the excess cytokines and this could be a way of getting your own immune system to put the Lyme in its place without the use of nasty antibiotics or herbs.

You basically stand in a freezer for up to three minutes in nothing but thermal gloves, socks and slippers. I was very ‘British’ and was shocked that I could not wear a bikini and was checking the place out for cameras. I should have been slightly more concerned about being made into an ice cube. I know this is fairly obvious but IT IS COLD!

I managed it and my skin temperature got to 10.5 degrees Celsius (normal should be around 33). Apparently singing ‘ice ice baby’ is fairy common and I wasn’t too original. I did feel a tad smug, when the next time I went I could hear the guys who went in after me squealing like little girls.

Has it worked? I don’t know but it makes me high as a kite because of the rise in endorphins. So much so that when I went into the much needed sauna after I was singing ‘Your Hot and You’re Cold’ by Katy Perry and left the building telling everyone I loved them. Including some random man in the waiting room who looked fairly amused if not a little scared. ‘High’ may not be ‘healed’ but it’s far better than most of the side effects I get from therapies that’s for sure. I LOVE YOU!

Well of you’re going to do it do it in style!

September25

So, I got to America in one piece. Well, sort of, I feel like I left half of my brain in the washing machine back home but that’s not anything unusual for me these days.

We did it in style starting off in the first class lounge. It would have been more fun if I could have hit the bacon sandwiches and champagne harder but I was too wobbly and was kind of stuck to my seat. Just as well, there could of been a shortage – been gluten, sugar and alcohol free for far to long for all the good it has done me.

My friend had already had a ticket booked in business class and had very kindly insisted to upgrade me once we got to the check in but unfortunately the flight was full. I was fine with that (but was dying a little inside but I put a good a brave face on – I’m very good at that by now). My lovely friend sent be back a glass (well more like a pint) of champagne back and some posh snacks. Oh the looks I got, I felt like a film star that has had her ticket mixed up and was getting special measures. Well, I have become a vey good actress (as have most Lyme sufferers) so I may as well go with it. I quite like the thought of being a diva – bring me more champagne hostess and make sure it’s 8.5 degrees C!

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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 😉

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