Still on that boat…

Strawberry blonde in a dizzy world!

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!

America…again!

September24

My sister and my nephews have been over for my cousins wedding. It has been really good fun getting to know the kiddies. I have loved playing with the toddler as he is such a character but feel so sad that I didn’t have more energy to give. Sticking Frozen on worked when I needed a rest – well for about 6 minutes max! Smart cookie – taught me how to take a selfie 😉

Well, I’m off to Houston in America (unfortunately I now have that Neil Diamond song going around and around in my head). This time it will be to stay with some friends for a few weeks not just a quick dash for another pointless and disappointing appointment.

I’m really really poorly at the moment so I’m a bit worried about how I’m going to get there. Yes, by plane before some smart Alec puts that in my comments! Even if it’s just the change of scenery from my bedroom to a bedroom over the pond I think it will do me good. Especially as my friends are such amazing company. I think I may be gong back to basics and trying laughing therapy instead of all this bonkers stuff I’ve tried that has made me worse. I’m having to take an extra case for all my drugs and supplements – I wish I was exaggerating!

Lets hope a bit of rest and relaxation will help and that it wont be ‘Houston we have a problem!’

I require some fun please!

September5

Hey, sorry for the lack of updates – things have been rough and technology has let me down. I have deteriorated big time, so much so that it really scares me – what will I be like this time next year? I always imagine I will feel better in the future but I’m not worried that I’ve been rather foolish. I get let down over and over and the more I try the worse I seem to get. It has been a really stressful few months with lots of bad things happening (other than my decline) and I don’t think all of that constant epic stress and worries have done me any favours. I think even a fit and healthy person would struggle.

Fortunately for me I have been supported by my friends and family – everyone has really upped their game. I received Eunice the unicorn from a good friend and it made me laugh so much I realised how rare me laughing had become. I decided I needed to find the fun me again – yup I could fit in the cardboard box that it came in. I had a GnT with her but found out she was more of a Chardonay kinda ‘gal!

With my condition being a bit dire we decided to try something different. I have a charity MS centre close to me and it is a truly amazing place. I have been doing HBOT which is hyperbaric oxygen therapy.

You basically sit in a pressurised chamber with an oxygen mask on. Yes, it is extremely claustrophobic and not for the light hearted but I’m desperate here, I’ll do anything! The theory is that the nasty Lyme bugs can not thrive in a high oxygen environment and die yay!

It is so amazing that I often share the chamber with people with such awful disabilities and I have NEVER been with anyone that complains and I have been over twenty times now. I make sure I get my moneys worth though – my mask is on so tight that I have the imprints for the rest of the day. Sexy huh?

I have also decided to now try the herbal route. The antibiotics, antivirals, antimalarials and god know what ever other crap that I have been doing have started to knacker my kidneys. I’m drained physically and emotionally. I can’t spend any more time on the bathroom floor wishing that I hadn’t woken up – and that feeling will never get me better. It’s hard as I’ve invested so much into the treatment I have been doing but I think it’s time to be brave and jump ship. Eeeek.

I’ve got to get back to the fun me, no matter what it takes!

Gees that was a long sleep!

April16

Well since that appointment things have been extra tough. I think I’ve been pretty much asleep ever since DC. My mobility is getting worse and worse and I’m spending even more time in bed or on the sofa than I was before the appointment. I think of what I’m going through is due to the fact I’m reducing my neuro medications but you can never quite tell when there is so much going on, there are far too many variables to be sure. I was on really high (maximum) doses of a couple of drugs and now I’m trying to reduce them and it’s proving to be really hard – my body is not happy at all! I feel I need to join Ant in rehab – at least he could make me laugh about it!

On my quest to find answers on how to deal with this living hell I went and ordered every secondhand self help book that has ever been recommended by anyone. They are currently piled up on the coffee table looking like the leaning tower of Pisa.

Most of them just piss me right off if I’m being honest. Dealing with a chronic illness which may or may not resolve isn’t really covered by most books. Think I may write my own! One book was recommended by a friend, I won’t mention the actual title as I wouldn’t want to put anybody off reading it. Someone else may get real benefit from it as its definitely not a one size fits all with these types of books. It was about how you have to basically chill out, wish for what you really want and the universe will look after you. Well, that very quickly got launched across the room with me shouting ‘no it bloody doesn’t!’. I think I’ve reached a new low point when I’m having a go at a book, that’s clearly not doing what it says on the tin. The only book that I found to help me with my frustrations was ‘The Art of Happiness’ by the Dali Lama. There are really simple suggestions and observations that have made me feel less frustrated and helped me a bit with acceptance of my circumstances. I mean, not totally – it’s a work in progress.

 

I have now updated my list of which three people I’d have at a dinner party. It’s now James Corden, Adele and the Dali Lama, I think we would have a really good laugh!

With the Dali Lama in mind I stumbled across a Buddhist monastery (not literary I used Google) not too far from me that where they give meditation workshops. Now if you’d told me a few years back that I’d be taught by a monk in a temple how to meditate I’d think you’d taken some sort of hallucinogenic drug and suggest YOU go to rehab! I never would have done this if I hadn’t got sick, not in a million years.

The workshop was lovely. It was so peaceful in this beautiful temple surrounded by amazing scenery. There were about 60 of so people there, all ages, races and backgrounds and it was so quiet. There was something really calming about it, being surrounded by this huge group of people who want to learn to meditate for what ever reason they may have for exploring it. I’ll try and go again at some point. You won’t catch me in orange robes though – red heads don’t do orange 😉

I take that back, some red heads can!

Off to see the wizard the wonderful wizard of Washington DC!

February20

Yes not that catchy really, can’t see that taking off!

It was hard going trip. On the positive on the way out the plane had hardly any people on it so we were spoilt by the cabin crew. On the negative I got a migraine. On the positive we got through security and out of the airport in record time. On the negative the hotel we had only chosen because it had a bar and a pool – well both were closed. On the positive there was a health food shop opposite with a bar in it – only in America!

The clinic seemed to think I was doing well (hard to comprehend when you’ve been in bed/on sofa for six months, just had a migraine and had been in a wheelchair the day before) so they are reducing my protocol and hopefully my own immune system will kick in and take up the slack. They seemed pretty positive so I guess I have to go along with their plan and trust in their wealth of experience. My GP and I both think I’m deteriorating (I am – that’s a fact) and that my body is not coping with the drugs so he wanted less drugs to be taken too. So on the one hand I’m reducing drugs because I’m getting better versus the other hand where I’m reducing the drugs as I’m getting worse and need a break if that makes sense? I really hope that the clinic is right and prove my GP and I wrong.

I have been told to be more glass half full about this but anyone who has followed my blog for any length of time will know I’ve been at this kind of point hundreds (mini exaggeration) of times before and each time I get let down it’s taking me longer and longer to pick myself up again. I certainly need more brains (what’s left of mine needs an upgrade!), more courage to continue on with this never ending battle, more heart to stop the jealousy and ‘why me?’ that I just can’t shake off and that my doctor isn’t just a ventriloquist – it’s ok he never brings in a puppet!

I started the new reduced protocol (looks like it – practically needed a suitcase to take away my drugs from the pharmacy!) yesterday so please God let them be right – I really badly want to believe them.

So at the end of the consultation I wish I could have just tapped my heals together and been in my own bed. There is no place like home, there is no place like home – especially when you feel rubbish 🙂

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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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