Every week I think that the week will be calmer and less stressful than the week before.
I have tried to keep my diary free for healing, rest and socialising around my blogging and doctors appointments.
But life never goes to plan.
Every week seems to get crazier, faced with new challenges and tests.
So this week- what's been happening?
I have focused a lot of this week's blogs on serious topics that I felt would help and educate you all. I have enjoyed doing the research for these blogs and felt they were necessary but I also feel I haven't checked in with you all about my current situtation recently and I have used this week's blog topics to distract bringing up my own pain, hectic life and drawing attention to the craziness going on. I used my blog to escape.
Now, reflecting on the week I am ready to fill in some blanks and share the never ending journey that is not only this disease but life.
'Life is like a box of chocolate, you never know what you are going to get.'
Monday started well. We spoke to my professor discussing more options and getting some strong liver detox tablets that also contain vitamin C and D to support my immune system and heal my liver inflammation.
I went to the doctors and had my bloods taken, which normally is a task and a half. My veins rarely by ball and often collapse. However we managed it, my ECG was normal and I had gained a little weight - success! Yay.
I was feeling naff though, my joints were aching unbearably and I was struggling to breathe. I pushed my ill-feelings to one side and tried to work through the day.
Today was also the day when the Lyme Disease newsletter went out featuring my blog which is amazing and I am so grateful for being a part of an amazing cause.
My symptoms were becoming worse. I focused on seeing my friends later in the day and did my blog, research and emails. My Mum wanted me to go to the doctors and go home but there was no point and I decided on an early night having to cancel on my plans.
Letting my friends down crushed me, I do admit to crying as yet again I felt pain had won and I felt awful because my friends were making the effort to cheer me up and spend time with me. Yet again I felt I had messed them about and let them down.
Early morning appointments had meant a rushed morning and I had struggled to get out of bed. I really wasn't with it at all.
My mood was zoned out.
I hated this day, I wanted and needed to be positive about this appointment and I was allowing my pain to take over me and rain on my mood. My mind was clouded at a time I needed it to be sharp.
I then gave in and agreed to go to see the doctors, not knowing how I could keep going on with this pain but smiling and trying to be a positive as possible.
As expected - I was given a rough check over.
My breathlessness was put down to laryngitis as my throat was also inflamed. I was running a fever of 36.5 degrees C yes that is a normal temperature for many of you! But my temperature averages around 34.5! And my worst herx reaction when I was in Hemel recorded my temperature at 36 and that was awful. I literally thought I was going to die. So my temperate was high for me and equivalent to 38.5 for you.
The doctor asked me if I had been feeling unwell before suffering from feeling breathless. So I said I had Lyme and therefore I am always catching infections. Mistake number 1!
So despite explaining and the doctor having my blood results showing my inflamed liver in front of them I was prescribed antibiotics for early stage Lyme and to top it off I was only given half of the course!
Before realising this I thought right well I will just have to take them if it doesn't start clearing up!
Then returning home I realise that laryngitis is viral, the doctor had told me these antibiotics would help but antibiotics only fight bacterial infections. So ultimately if I had begun taking the antibiotics it wouldn't have helped my infections it would just inflame my liver further. In the end making me more poorly.
I get so frustrated - you go for help and to get better. Yet their advice could cause you more problems.
Now I will try and update you on my recent bloods;
My ATL levels which is the liver tissue were 130 four weeks ago! This is extremely high. It went from 68 to 130 in just a week. This was partly due to new treatments but my ATL level has never been higher that 79 so this was high. Dangerously high. Our ATL levels should be between 0-40.
What's causing it to be so high?
When the toxins are attacked by the immune system they begin attacking the liver, the liver become overworked with all the extra dead bacteria it needs to flush out without the bacteria also attacking it.
What are the dangers?
The worry is that the bacteria eats away at the liver tissue, replacing the tissue with scar tissue. Meaning they have killed off that part of the liver they have replaced with scar tissue. This can never be healed. The more the liver becomes affected in this way the more likely you are to contract blood cancers, hepatitis C and suffer liver failure. All major and damaging to you health which can result in death.
How do you improve you ATL levels?
Coming off the strong med's and focusing more on herbal treatments.
Adding apple cider vinegar, lemons, garlic and turmeric to your diet to help flush out toxins and reduce inflammation within the body.
Strengthen your immune system with vitamin C and vitamin D.
How am I dealing with this?
I have come off my strong med's and are currently on herbal treatments. I've upped my intake of lemons, turmeric, apple cider vinegar and garlic. I have tried to eat as fresh as possible, nothing too processed that just adds toxins to my body ( we won't discuss the ginger tiffin I had last night - but we have to treat ourselves ).
I am on strong herbal supplements for vitamin D and C as well as taking milk thistle to help the detoxing process and strengthening my immune system.
And my levels are now 68. They will once again be tested on Monday. I am not able to re-start my treatments until my ATL levels are 40.
All my other protein levels, muscle mass, bone density and other general levels are bang on.
My kidney levels are low but I have constant urine infections. As soon as I become tired, run down and my immune system is under pressure I get an infection.
Due to my immune system being very suppressed recently I have been constantly infected it seems.
My white blood cell count is low which is bound to be the case with Lyme. Those low levels means I am a prime target for infections and struggle to fight them off efficiently.
My white blood cells have dropped abit over the four weeks but like I said above I have been run down and so have struggled with a number of infections and fevers.
My red bloods are often low. Lyme need magnesium, iron and zinc to thrive so many Lymie's are deficient in these. Along with b12 the bacteria feel they need the energy more than you so take these nurtients from our foods.
We must try and eat food rich in these vitamins and supplement them to keep our levels high for our body to help heal itself. We can't afford for Lyme to be enjoying all our good vitamins and minerals whilst we suffer and feel poorly. Give your body plenty so then you too have enough!
The full moon - this was the night we had the gorgeous full moon 🌕 .. this caused me great discomfort and pain. My joints on my right side were aching and throbbing, I couldn't breath problably, I had a stiff neck and my spine was aching, I could feel crawling on the back of my neck and down my right leg! It's horrible it's like you can feel the monsters having a party under your skin!!
I was scratching my legs against the sofa trying to get off the bugs I felt were crawling all over me.
The night was hell, itching and scratching all night.
Again early appointments mean that getting up, dressed and ready is hard.
In a morning I feel like I have been hit by a truck and the reversed over. My muscles and joints ache, I am itchy and my head throbs which makes me feel sick ( like being hungover ). So trying to find something quick, comfy and easy to wear is sometimes challenging. You don't want to look a scruff nor do you always want to be seen in the same pants because that the only thing that doesn't irritate your legs.
I was feeling so unwell the night before that I hadn't got my clothes out ready to just slip into in the morning. To reduce stress. So waking up covered in a rash and everything itching. It was a pants day. No way could I have tolerated tights.
I felt a bit of a scruff but felt too unwell to care.
I ate my breakfast and detox'ed with my apple cider vinegar and hot water.
Unlocking the door and doing all my tablets.
I was exhausted and found myself panicking about how I was going to get through this appointment and food shopping.
Yet again I had, had to cancel on my friend she is a babe and understands but that doesn't remove the guilt from my soul.
I packed my bag and put it on my back, keys in my hand and flopped on the sofa. Knowing I was ready but I was zapped! Big time.
Mama walked into me- close to tears and helped me up, down the stairs into the car.
I got through my appointments, food shopping and spent the day working on projects, blogging and looking into new treatment routes.
I then found a treatment I really really want to try. It's called Rife treatment so it's like a laser treatment in hope we can kill off some of the bacteria. So I will be going in 2 weeks time to go and check it out, try the treatment and see if I can get any benefits.
That will be at an independent clinic in Hull.
I've been looking into abroad treatments too. Though these need big decision making and I will be discussing more with my professor in two weeks time.
Friday - didn't really go to plan either. You know, you know the life of Sophie.
I had hoped to sleep and had take extra herbals yet I hadn't had success with them. The pain prevented me from getting comfy.
So I pulled myself out of bed feeling zapped and irritated.
I worked a project I can't wait to share with you ( later this year ) !
Then I got a knock on the door and received a letter from my local MP Ben Wallace thanking me for his gifts and the lime green tie I had bought him. He told me how grateful he was and that he was meeting with the Health Ministers today where he will wear my tie.
We don't just spread awareness but we dress our MP's to impress - that's how we roll.
So that was lovely to hear from him and that kind of boosted me.
The calmness can't last for long can it. My Mum rang me to tell me that Alex was in hospital with a possible hernia that would need operating on today.
Can this week get anymore frantic? How has it been about doctors, illness and hospitals all week.
My Mum told me not to stress but of course it's my brother I am going to worry and stress. So had a little cry and panic and then prayed he wasn't in too much pain.
In true form though Alex was loving it - soaking up the attention and embracing the situtation with jokes and laughter.
I had an appointment back here which I hope to share with you all soon! But it's causing me great stress and has is a big life change. So I stayed home to go to the appointment, my Mum came home then we went straight up to the hospital to see Al.
They ruled out that Al had a hernia but are concerned that an infection has caused swelling in the lymph nodes. So he has to go back for further scans. Though luckily he didn't have to stay in and have an operation.
I can't wait to be cheered up seeing my best friend Ellie enjoying herself at Preston Pride and supporting her for being the amazing person she is.
I won't be lasting all night but I have amazing friends. Matthew driving us both to go to Preston just to have a few drinks, show our faces and be a support but not do a 10 hour drinking run. Boy that would finish me off.
I feel this is a great compromise and I am lucky enough to have all my friends be very supportive and understanding about what I can and can't do.
And that's the week. Thank god for the weekend. I would say I will have a chill weekend to recharge but what fate has in store for us.
I am exhausted. I apologise for this blog being quite long. It was draining putting this together for you. As it's an emotional and physically challenging time currently. This blog was set up to track my healing journey through life, food, treatment and advice. So here we are the reality of chronic illness.
Let's finish on a high!
Postivies of the week;
- weight gain
- big life decisions made ( with help )
- ATL levels dropped ( even slightly )
- MP replies and helping to raise awareness
-supporting my friend in a subject close to her heart
- new projects
- Alex is okay!!!
Bless you all angels