Sunday, April 29, 2012

It never rains but it pours...

This is how my life feels right now.  All the stress with my shoulder has weakened my body and my Lyme symptoms seem to be taking over again. I saw my doctor last week and he thinks that I have probably lost about a third of my progress because of my shoulder.  I have all kinds of symptoms again - headaches, leg pains, flu-y type feelings, sweating, shivering, sore teeth, upset stomach, visual disturbances, fatigue and tiredness, unrefreshing sleep. I also have a rash which may be Lyme-related or may be an allergic reaction and an ingrown toenail.  Oh, and a sore shoulder!

I have been reading a lot of Lyme literature again, kick-started by this BBC article about a new study into chronic Lyme disease.  Basically, there are two arguments wrt "chronic" Lyme.  The standard argument perpetuated by official authorities is that Lyme disease is easy treated by one month of antibiotics and then you're cured (even if you still have symptoms). The second argument, supported by Lyme-specific research groups and Lyme patients is that people with disseminated Lyme disease - where the infection becomes systemic - need long term antibiotics to treat a more complex infection because one month of antibiotics doesn't work in these cases.  The problem is that there is not ONE reliable test that can confirm - or exclude - a Lyme diagnosis.

The article (which, as usual, is full of misinformation about Lyme) discusses a new method of diagnosis where uninfected ticks feed on someone with disseminated/ long-term/ chronic Lyme and then the ticks are tested to see if they have acquired the Bb spirochetes that cause Lyme.  A study on primates showed this did happen.  Basically the study could "prove" that it is possible for Bb spirochetes to survive a course of antibiotics.  I never understand why this is so controversial given that other bacterial infections (e.g. TB) and even acne require antibiotics for longer periods of time.

It's actually more interesting to get into the real microbiology of Lyme spirochetes and learn that they are very clever, very adaptable little buggers that can morph into various forms in order to avoid capture by the immune system. One study (in mice) actually showed that the spirochetes could stop the immune system from detecting them as they invaded the lymph system.

In a way it's comforting to read other people's stories and experiences. This site has lots of them.  I read a particularly interesting story on there this week about a physician who got Lyme.  She was ill for years and years and saw many doctors for various symptoms before she eventually was treated for Lyme. Even although she's a doctor, she was still dismissed by other doctors who didn't take her seriously because her symptoms seemed so disparate. There are hundreds, probably thousands, of stories online about people's Lyme experiences and they are all very similar. 

No-one knows why some people get very ill with it and other people manage to fight it - or never develop it after a bite.  I suppose it's just the same as some people being allergic to certain foods, or getting acne, or having a low alcohol tolerance.  Everyone is different.  There are various theories, but no answers yet.  It does seem that the longer a person has an infection untreated, the higher the bacterial load on their system, and the worse the symptoms become - pretty simple really.

So back to my situation right now... It is also the case that for whatever reason, spirochetes attack the weakest parts of the body, or attack when the body is weak.  At the moment my symptoms have all resurfaced because my body's basically fighting on two fronts.  My doctor says that right now my shoulder has to be my priority because getting my body stronger - healed - will help my immune system fight the Lyme again.  But as soon as I can handle it we are going to take a more aggressive approach to the infection again, probably with some increased antibiotics.  Right now I have increased some of my natural supplements that help in various ways.

There's not really a lot of information on having surgery while fighting Lyme, so I've not been able to find out much information on it.  It doesn't really seem to be affecting my shoulder as much as the surgery has affected the Lyme.  I suppose it's impossible to really separate them out, but it feels like my energy has to be focused on shoulder recovery and physiotherapy whereas before, all my energy was focused on the Lyme fight.

Another thing that is common in other people's Lyme stories and blogs is the difficulty of explaining it to people. It's often called an invisible illness because it doesn't necessarily make you look ill.  It's hard to explain how much energy everyday things use up when most people never give them a second thought. Even having a shower can use up half the day's energy sometimes - which is an improvement on using the whole day's energy, like it did a couple of years ago.

I haven't written my blog for a couple of weeks because it's not been a great couple of weeks.  I'm sore, everything feels like a huge effort and I want to sleep all the time because I feel like I have no energy.  And I really don't like to moan and to complain so I was waiting to write something good.  But really, I started this blog to try to spread awareness of Lyme disease and to help increase understanding of the illness so I guess that means talking about the bad stuff too.

This is my favourite song this week. Nothing like a bit of musical motivation and inspiration!

Wednesday, April 11, 2012

6 weeks, making progress

(I actually wrote this on Tuesday 10th April, but the website wouldn't upload it)

Today marks 6 weeks since my surgery which is (apparently) an important mark.  It means I have had time to heal and can now move on to more vigorous physiotherapy without worrying about doing damage to the repair.  This pretty much means the physio has licence to torture me!!

I saw Dr K in Lexington last Friday and he seemed pleased with the way everything is progressing.  He basically told me how I was feeling, where it was sore and tight and why, which was very reassuring and good to know that everything is exactly as he's expecting.  He said there are two factors, one is to deal with the weak, tight muscles and the other is to to get the brain to recognise I have these muscles again.  Basically after not being able to use the muscles for 10 months, the neuromuscular connections have to be rebuilt.  He said it's like the "thinking brain" says "raise the arm" and the "acting brain" goes "huh"?

The trainer in Lexington gave me some exercises to do and really made me work.  I basically rolled a ball about with my hand (or tried to) and moved a towel about a mirror (again, tried to) and then felt like I'd run a marathon.  I really can't believe how much effort and energy it takes just to do a few tiny exercises.  I have to concentrate so hard on every movement to get my arm to do what I want it to! They told me that it's really important I get it moving now so I can make my recovery faster.  If I do well, I am looking at 5 months, if I don't get it moving now it might take up to 12 months - motivation to torture myself!  

They did also tell me that they have never seen this muscle detachment along with a fracture before and bone involvement usually makes things take a bit longer.  The specialist in Philly who sent me to Kentucky said Dr K was pretty much the only doctor in the world doing scapular muscle reattachment surgery.  A sports doc I saw at home said he wasn't aware of anyone in the UK doing it and that Dr K was known worldwide for his surgical technique.  (And Google doesn't know anyone else doing it either!) This means that I am the only person to have had scapular muscles reattached to a fractured (although now healed) scapula!!

The worst pain I still have is to the right of my scar, just to the right edge (lateral border) of my scapula, it still feels bruised and swollen and they told me that's my infraspinatus which is the muscle they had to "get out of the way" so the drill could get to the bone. No wonder it hurts!  To break up the scar tissue I have to get a golf ball and press it between my shoulder and the wall and then roll it about for a few minutes.  OUCH!! 

So the golf ball makes me want to cry, rolling the ball on the table makes me feel sick and then "washing" the wall with a towel brings on the blackness.  Mum reached me with a chair just in time at physio on Monday - I almost hit the floor!

It is definitely time to muster as much grit and determination as I can...

"A journey of a thousand miles begins with a single step."
             ~ Lao Tzu