Well I’d count the appointment in Washington DC as a roaring success. They were so knowledgeable about Lyme and how to treat it and they were pretty confident that they can get me better. They are certain I have Lyme Neuroborreliosis and also another co-infection called Babesia which explains my odd blood results and some of my symptoms. They have seen loads of patients with my exact symptoms which was reassuring – yay I’m not mad! They have a very comprehensive plan which all seems like a sensible approach, although very complicated the amount of drugs and supplements I have to take.

It’s not going to be a quick fix (I’d given up on that idea years ago!) and it will be a long tough road ahead with lots of ups and downs. I’m ahead of the game because of my diet, saunas, salt baths and yoga that I was already doing so I’m really pleased all of the hard work has been worth it. I’m cautiously positive as I’ve heard several consultants say they can get me better and then after a while just give up on me. I feel so much happier now that I have confidence in someone 🙂

I’m currently on lots of anti-epileptics to try and calm my brain down from the damage caused by the Lyme, they will help get the pain, sleep disorder and brain fog down before starting antibiotics. I don’t know if its adrenaline or being given some hope but touch wood I feel much better already. They are supposed to make you groggy but I’m sleeping better and my head is much clearer in the day. I’ve even managed to take enjoyment in the more simple things in life – plants are doing well.

I start the antibiotics in a couple of weeks so I know that there will be rough times ahead but hey, I’ve managed it before and I will again.

Washington was really tough and I spent most of it in bed. The corridor from hell to get to the room didn’t exactly help symptoms!

My Dad went out sight seeing during the day, but it was okay he’d left me with supplies to keep me going – I was very glad of the cereal bars I’d packed that for sure, I can’t have any of that!

We did go out for dinner in the evening and had a good laugh, my pure relief of the outcome allowed me to really enjoy it – I think dad did too!

One morning I did manage to do a bus tour (I’m good at sitting down!) so I did manage to see Washington, it’s a lovely city. Arlington Cemetery was very humbling – dying in service to your county puts things in perspective and if they can do that I can fight for my health, I can do this!

Normally I only count down to a holiday or time done on horrible medication but now I’m counting down to my appointment in the States. It has felt like such a long time but now it’s in a weeks time I can feel the panic set in. I even had a dream (more like a nightmare!) where I went to the appointment and he told me there was nothing wrong with me and to just man up and get on with it. It would be funny if I hadn’t actually happened to me in real life a couple of times!

So I have been trying to relax doing a bit of gardening (I clearly didn’t dig all that thanks Michael!) and growing some veggies – they just about survived the storm!

Thinking this as therapy may be more successful, and if not there is always vodka…maybe vodka whilst colouring!?!

Shitttttt scary sums it up quite nicely 😉

Happy Easter 🙂

Well, the last few months have been a disaster. I have been gradually building up on the herbal formulas and feeling worse and worse. My Specialist has now run out of them so I can’t continue treatment – what a massive waste of time! Although I’m furious that my treatment has stopped due to poor organisation (awaiting a delivery from the US) part of me is pretty relived. Spending day after day too ill to get up is very hard going, especially when you don’t know if its even of any benefit in the long run. I’ve been off them ten days now and things are starting to settle down.

I have been spending a lot of time researching treatment abroad as I can see that I have exhausted all options available in the UK. I have actually booked an appointment with a clinic in Washington DC. The clinic has had some good results, no promises of a cure (of course!) but it appears that they get some improvement of symptoms in most cases. They take on more complicated patients who have had Lyme for a number of years and have not responded to any treatment – sounds like a familiar story!?!

The only thing I had with an American flag on – typical me! So I’m all booked to go with my Dad in May, I have to hope that it is the right choice. It’s a pretty daunting decision when you don’t know if it is the right thing to do but it does feel good to have a plan of action, sitting around deteriorating is not an option! It’s almost as exciting as my tomato plants 😉

Things are really shit – what a shocker!

Well the appointment was not all that positive unfortunately. The Specialist admitted that he would have expected to see some improvement by now and his options are limited. He doesn’t feel my body can handle any more antibiotics at the moment so has given me some more herbal remedies called Byron White formulas. I wasn’t exactly thrilled but it was better than nothing and I don’t exactly have a lot of other options!

He pretty much confirmed that if these don’t work (and lets face it I feel it’s pretty unlikely!) I need to look at going abroad for more intensive treatment, but no suggestions as to where. We are rather limited here, what with half the profession denying the illness even exists not really helping the matter. I had a conversation with a Professor who readily admits that I have a pathogen of some sort causing my symptoms (he treated me for Lyme) but feels that the antibiotics I’ve had already would have treated ANY pathogen so now I have a ‘Post Illness Syndrome’. He feels that my best shot is neuro rehab despite the best neuro rehab in the country saying it would be futile as she has worked with me for years and seen no positive effect. Where exactly does that leave me!?! The words ‘creek’ ‘shit’ and ‘paddle’ spring to mind!

So now I’m looking into treatment abroad. The big barrier being money, sitting on your ass all day doesn’t exactly pay well 😉 Neither specialist has any suggestions of where to go so I’m literally Googling ‘Lyme treatment’ and stalking forums. You never know old Byron’s concoctions may even do the trick!

Sorry for the radio silence. I had a nice Christmas but it was so easy to compare to previous Christmas periods when I have managed to do far more, it was rather disappointing. The diet has been going really well, I had to have a day off on Christmas day – it’s simply not Christmas without roast potato’s, gravy and lots of wine! Like many people I have really got into the super healthy diet since New Year. I have to say I have a new found respect for people on diets. I have always been fortunate to be slim and quite athletic so I’ve never really had to restrict much before – it’s so hard, its like a full time job just trying to work out what I can eat each day.

I was reading a thriller the other night and the lead character mentioned a cheese baguette. I’ve never been crazy about cheese or bread but the though of that cheese baguette was all encompassing. I have absolutely know idea who did the murder in the end  and what’s more I don’t really care I’d kill just for bread so I can’t judge! I think I have had a bit more energy so that’s spurred me on to continue with the strict diet. We are so lucky in this day and age that there are so many amazing recipes on the internet, even had some great ones out of the paper and Tesco’s magazine. I love these Paleo banana pancakes for breakfast.

Although I have been quite creative with experimental baking to try and have nice things that are aloud on the diet I was very excited to find Paleo friendly ice cream in Waitrose!

I had my hair all chopped for a change and a waitress in a Thai Restaurant that we frequently go to said I looked like Marilyn Monroe. We all fell about laughing as I’m about as curvy as a ruler and GINGER but a girl has to take a complement when she can ay?!?

I’m seeing my Specialist tomorrow, I have no clue what he will suggest – I suspect he may just start banging his head on the desk and I may just join him!

Bugger waiting until January, if I have these bugs in my blood I’m going to starve them out right now! I have had no carbs, no caffeine, no dairy and no sugar today. I’m following an Autoimmune Paleo diet which I’ve modified (I don’t want to lose more weight). I do realise I probably can’t keep todays enthusiasm up, and no doubt I’ll be selling my granny for a piece of dairy milk by next week but its a positive start. Unfortunately I spent so much money on recipe books on Amazon that I now can’t actually afford the ingredients to create them but live and learn 😉

I had gluten free porridge with berries for breakfast, tuna steak on a big green salad for lunch and chicken with roasted cauliflower for tea.

I think what really helped is my Yoga teacher advised me to take Tumeric tea. Tumeric is an natural inflammatory and seems to be the ‘in herb’ right now. I made the tea this afternoon whilst chanting ‘please don’t be rank, please don’t be rank, please don’t be rank’ and guess what? it was bloody awful, but on the plus side I have felt so sick ever since I’ve not had any cravings what so ever 🙂

I’ve also got back into my juicing, much nicer than Tumeric tea but not quite a mulled wine!

Well unfortunately I’ve not exactly been base jumping down to my local shop to buy my pint of milk as I was hoping! I can’t believe how after all these years I’m still foolish enough to get my hopes up that something will actually work. I think I just need to give up and be put out of my misery!

My eyes still haven’t recovered from the patch and I got the mother of all migraines that lasted for four days once I removed the flippin thing, not fun at all! I’ve had a couple of days where I have left the house or done something fun but the pay back almost doesn’t make it worth the while. I had a lovely time with the yoga girls followed by a very drunken afternoon of jazz in the local pub – two glasses of wine and I loved EVERYBODY!

I had some great Christmas drinks with some friends at the weekend, still laughing at a mate squeezing into my Christmas elf jumper – annoyingly it looked better much on him than me! I had another bad day today and I’m feeling Pretty low.

I’ve tried dietary ‘stuff’ before (gluten free, dairy free, chocolate free, citrus free, caffeine free – well just everything nice free!) and it has made no absolutely no difference to my symptoms. In my desperation I think I will have to give it another go, I’m running out of options and I categorically can’t live like this. I’m going to give myself a couple of weeks over Christmas so that I can enjoy a mulled wine or two. Starting in January I’m cutting out anything Lyme friendly (and writing it on here so that I actually tick to it!). Thinking I’m going to need a lot of willpower…oh and a massive mulled wine right now to make up for being alcohol free once more!

Almost there. Had to put the last few days all in one post as that is how exciting they have been, can’t even get a flippin paragraph out of it! The Patch was far from successful, it gave me blurred vision which made the vertigo that little bit more problematic – just what I needed! I’ll write more when I can see again, this is so far from funny!