Is this the winning combination?
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!
Go sues!!!! So glad to hear that your treatment is going in the right direction and totally agree with Mary and Andrew – now you know what you’re fighting!! We miss you here but stay put – Texas seems to be agreeing with you!! Xxx
Miss you too! I really hope that this is the way. Mary and Andrew are awesome xx
This was a great post to read! Glad things are looking up for you. I often think of you. Thanks for doing the blog so we know how you are! X
Well I needed to do a catch up as so much has happened! Thanks so much of thinking of me and reading my blog, it means a lot xx
You will kick this thing’s butt one day soon and we will have the biggest party to celebrate ❤️❤️❤️
Thanks Emma it will be HUGE!! xx
We do read it Sues xx
Glad to hear this cycle is really promising and looking up, albeit a long road (I’m sure you would say whenever is it not???).
It’s been a never ending road and I just hope I’m finally going in the right direction! Thanks Marcus xx