Wednesday, 30 October 2013

Up, up and away!!!

Roll up, roll up for this weeks issue of 'Good News Extra'.

After the pericarditis and feeling so consistently crappy on the biofilm/protomyxzoa protocol, I was starting to doubt my LLMD and was getting quite disheartened about the lack of progress - seeing Dr X whilst using a wheelchair did not feel like progress from my last trip to Washington 9 months ago. I was fully expecting the pericarditis to set me back by many months and for the new Xylitol/Lactoferrin protocol to be hell on earth. I have been pleasantly surprised on both fronts. Like one of those insanely bouncy little rubber balls, I have rebounded with amazing speed from the manky heart episode (with the aid of Allicin Max, my new favourite viral treatment). The dreaded 'ultra herx' with the new 'chewing gum, iron sucker' protocol never materialised- herx yes, but I wasn't bed bound or reduced to a quivering wreck by it.

It feel like the hideous Protomyxzoa treatment has finally paid off. In the last few weeks/months, I have done a ton of things which would have been impossible before. I've been camping, done an 8 mile bike ride and 10 mile bike ride (mountain bike, off road, some little hills), managed the weekly grocery shop fine- usually not even needing to rest before unpacking. Started to finally decorate the hallway- I bought the paint when we moved in just before I relapsed. Started to get ontop of the domestic chores- although there is still a backlog of clutter (that pile of doom in the kitchen keeps glaring at me). I've not needed a nap every single day (which is just as well, as kiddo has dropped her afternoon nap). Today I am going to drive to my friends house 40 minutes away and I'm not thinking 'bugger, I'm going to be struggling to not mow down pensioners and hurl us down a hillside'. Yesterday I walked round town quite a long way- not at a snails pace, not needing to sit down all the time, with a normal gait. Yes, I did need to spend the evening on the sofa as a result but I'm not paying the price today.

Excited to be back on the bike- and looking like I'm on day release.

I'm not out of the woods yet- I'm still struggling with sleep. I got all over confident and tried to do without my sleep aids a few nights ago- a failed experiment. I normally take 400-600mg GABA, 10 mg Amitryptiline, 300 mg Gabapentin and on bad nights 3mg Melatonin to sleep. I still need it.

I still need daytime naps on some days. I still have fairly weak muscles - my painting arm is weaker than it should be but much better than it was- I can blow dry my hair now without struggling. My heart is still damaged, but that's probably permanent.  We decided against the angiogram (invasive, some risks, wouldn't change my treatment), the cardiac MRI showed a fair few issues, the main cause of the poor movement of the front of my heart is probably atherosclerosis (from Lyme- I have a pretty good diet). Gag reflex is still gone. I still have word finding difficulties. I get eyelid ptosis from time to time. I still have to have my gallbladder out - I have an NHS appointment coming up to discuss that.

However, there is a long list of symptoms which I am just not having anymore- dizziness, tippy feeling, headaches, severe fatigue, plexitis and alterered gait/not being able to walk, ataxia, brain fog, migratory joint pain and shooting pains in muscles, bladder spasms, memory problems, concentration and cognitive problems, nausea, nearly fainting a lot, erratic blood pressure, twitching muscles, skin is no longer blotchy, nail beds are less white, constipation is gone, v light periods back to normal, hip pain gone, random days of crying a lot - all these have gone in the last couple of months/6 weeks.

Of course, I could still slide back into the Lymey abyss - if I get a bug or perhaps after my gallbladder surgery. Our daughter is not having the live attenuated flu vaccine as she has to stay away from immunocompromised patients for 2 weeks afterwards and if I can get pericarditis from hand foot and mouth disease and if a cold puts me in a wheelchair, I think I'm probably 'mrs shitty immune system' still. I'm also not having the flu vaccine - I think I'll take my chances and just obsessively hand wash after being out in public.

So to anyone out there who is wondering if it's possible to ever recover- I hope this gives you hope. Yes, I have access to a top LLMD,  I have money to pay for it. Yes, I can tolerate the antibiotics and don't have gut problems.  Yes, I wasn't infected for a long time before starting treatment. I know I'm really really lucky and for some (probably most), it's just not so easy. Hang in there, I am hearing horrendous stories every day, and doing what I can to help these people.  Keep searching for answers, keep questioning things, keep talking to other sufferers- I recommend the facebook group UK Lyme disease discussion group and Eurolyme as being helpful places to get support. Never give up- there's always something that can be done.

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