Saturday, August 1, 2015

Zen and the art of colouring


It has been a while since I've blogged.  There are various reasons for that, right now I'm just going to leave it at 'this year's not been an easy one'. I'm sure I will get around to filling in the gaps at some point.


But, it's a new month, and I have been thinking about my neglected blog; so hopefully it will be a successful and productive month; and I am hoping my blog - and writing - will help me get through it because it feels like anything that helps is worth it....... I am sure I'll get into that later too.



https://www.pinterest.com/gmun22/inspiration-for-recovery/


Recently I have been embracing 'mindfulness' in a big way - there are lots of different specifics claiming to teach mindfulness, or to help achieve mindfulness, but for me it is about recognising where you are and what you feel in that moment, identifying that, accepting it, dealing with it, and then allowing yourself to move on.



https://www.pinterest.com/gmun22/pain/

This specifically describes a very traditional method of mindfulness, but the key point is identifying how you
feel in the moment and finding what works for you  For me, that's not simply sitting and breathing, since
emptying my mind - although the ultimate meditation - just doesn't work!


https://www.pinterest.com/gmun22/just-me-my-thoughts/


Writing has always done that for me - it's always been an escape.  Art (as in drawing, painting etc.) has played a big part in it too - but since hurting my shoulder 4 years ago, art has still felt like more of a chore - an exercise in determination rather than relaxation...... sometimes worth it, sometimes not; but definitely something I still love to do when I can.





But over the past few months I have found the 'adult colouring book craze' to be the perfect compromise between my (limited) body and mind.  I honestly think it is the first time I have found something that allows me to relax and to switch off since I stopped being able to exercise - a decade ago.  I'm not creating the art, so it's actually more relaxing than drawing; I can get into 'position' - pillows positioned perfectly, both arms supported, my neck supported by my neck pillow, my pens/ pencils/ paintbrushes right next to me; sometimes I have Netflix or music (or um, noise, I've also become a fan of binaural and isochronic beats for pain/ sleep/ relaxation/ energy - not that I've found that one very useful.....); sometimes I am just thinking about colours - I can feel my subconscious ticking away, as always, my thoughts just flowing through my head, but they are not my focus.  I am lost in colours and designs and I feel relaxed.  Anyone who knows me knows that's not exactly my strong point.  My attempts at meditation are pretty much summarised in this old post: Meditation Failure.  All attempts: past, present, probably future - all of them!  So finding my zen in a colouring book is a pretty significant achievement!



https://www.pinterest.com/gmun22/inspiration-for-recovery/



And just as an extra bonus, my shoulder surgeon, hand surgeon, physios and doctors all approve - I am rebuilding neuromuscular connections so it's actual therapy on all fronts! (I've definitely stopped dropping things as much with my right hand....... not completely, although I haven't involuntarily thrown anything for a while); I'm getting better at staying inside the lines with my right hand(!); my left hand seems to be better at that - I am not sure if I am benefiting from improving my ambidexterity and exercising both hemispheres of my brain; or if I am just confusing left and right even more; but either way, it's pretty relaxing, yet beneficial rehab for both sides - I can just swap hands when one side gets a bit tired............ I've even managed to colour with both hands at once! That goes back to a bit more concentration and not as much relaxation though....

Oh, and I am absolutely recommending 'colouring books for mindfulness' to everyone I know for everything and anything!

                                    

                   

                      

Just a few examples


The secret of life is in art

~ Oscar Wilde  ~

Friday, April 10, 2015

Stitches, funky bandages, fainting and more...........


(I started writing at the beginning of the week; bits & pieces added throughout this week - remaining update to follow...)

I am opting mainly for a picture-story update today.

A week ago, I went back to the surgeon to get the remaining stitches out.  This is how they looked prior to the appointment.  I still hadn't seen what was under the paper stitches on my wrist:


I still had stitches between the thumb & index finger; the centre-bottom of the palm, and  the one along my wrist:  



And still loads of ink, making it hard to see!


Since the last visit, I had added a bit of style and colour to my incredibly fashionable splint - who knew they made designer plasters?!



Too fun not to share! Well, if I had to wear a bandage...
.... and colour therapy, right?!


And back to the clinic.........

The one on my wrist under all the 'sticky stuff' (going with that 'technical term', since I got a partial arm wax as it was removed) was pretty cool - the stitches were under the skin, hidden.  There were just two long 'threads' at each end, one was cut then the other pulled everything under the surface out with it (you can just see one in the photo, I had the 'oh can I take a photo?' thought almost too late).



This was pretty cool - the stitches were inside and each end had a 
thread sticking out like the one on the right - she just cut one 
end (then I took the photo) and pulled out the remaining 'tail'  


It looks fine, but considering it was stitched from the inside - and my comparison
is how amazingly fast and neatly the scapula incision (with 18 STAPLES) healed -
 it doesn't look quite as neat as I thought it would - yet.  Lots of aloe vera.



The physician's assistant asked me if I'd had any more "dizzy spells".  "Nope - it's never happened before and it hasn't happened since." .......... until 5 minutes later when she took the stitches out of the incision on my hand and the room  began to swim, I was suddenly drenched in sweat and throwing of layers of clothes around. Well, as much as I am able to 'throw'.  Or undress.  Mostly a scarf and cardigan awkwardly hit the floor.  At least I didn't.  


I DON'T KNOW WHY!!!

BUT I DON'T LIKE IT!!!


Stitches out:



If you zoom in, there's still some in there, apparently
they "grow out". Not especially fond of that info.



The one between my thumb and index finger had been seeping (bleeding really) even while stitched.  My physio told me to clean it with soap and water and keep it covered.  The one on my hand also bled - it wasn't totally joined and pulling the stitches out hurt more than any other time I've had stitches removed. Actually, on all previous occasions (4 or 5) I've never felt more than a slight pull.  Maybe that's why my head started swimming........?  Also not something I've experienced before and I'm definitely not a fan of that.  I've had the 'blackness' that I've written about before, usually from pushing through severe pain, but that's an entirely different sensation.  It still wasn't the sorest part of my body though - unfortunately 95% of the time, my right scapular area still wins there.



HOWEVER..... Unfortunately, this week, my left hand, my 'incidental' little injury, my 'minor' surgical procedure; my 'nothing to worry about - let's just get it over with' little old silly 'wrist sprain' with the simple, happens-all-the-time surgery has been making itself felt emphatically.



The day after the stitches were removed, my hand swelled, with hard lumps; felt like it was on fire; the incision sites became more painful; and I found it more difficult to move (as in while pressing hard and painfully with the other hand 'difficult to move' because of hard bumps; not a pathetic 'oh it's a little bit sore I can't do that exercise' hard to move. Just to be clear!


Top: swelling & discoloured hand  (not quite so clear here)

Bottom: All natural, late-night homemade antimicrobial concoction on dressing:
allicin, colloidal silver, tea tree oil and samento


Which worked really well!  The next day, it looked and felt so much better:

Really!
Swelling was reduced, not as hard, the redness was gone & the incision at my thumb
looked like it was properly healing after a few days with paper stitches


Panic over; disaster averted!  Or so I thought...........But that's pretty much where I ended this blog, and typing takes ages right now -  and sleep is much needed (although not forthcoming!) so until the next one........






Friday, March 27, 2015

Wrist surgery: I have gory photos!


I'm going to let the pictures tell most of the story here - it's much easier just now!


First though..........


Photo 1:  Day before surgery......... not knowing exactly how I was going to feel, or what I was going to be able to do, despite feeling knackered I went out with my mum.  I decided it might be the last time in a wee while for 'real clothes' (ie not sweatpants), make-up & my hair done properly. Vanity?  Maybe..... but really more: 'it makes me feel like ME ' than I care what anyone else thinks. It's taken a while to get to here, this is a reminder I have done it before & I'll do it again.  And it was a good decision!  Not sure when I'll manage buttons again; or sleeves with cuffs!  And even pulling leggings up with one semi-functional arm isn't easy when it can't reach all the way around my body!  Sweatpants and ponchos are my current fashion statement! (Yes, together.) :-D


Photo 2: Hospital gowns just aren't that flattering!  I would totally redesign these.  Plus they just give the illusion of privacy & then different people still have to stick different tubes/ sensors/ needles etc through all the holes that absolutely do *NOT* sit in the right places on me.  I am not a 'one size fits all' in anything!



The difference a day (& some make-up & sunglasses) makes!




Briefly: surgery went ok.

Pre-op:




Not much point in looking ridiculous if  you can't laugh at it (I'd redesign those hats too)!

And the IV into my SORE right side did hurt, but I declined the offer to have it in my FOOT
- I'll stick with a wrecked upper body & not invite other areas to join in..... 



Post-op dressing & FAT fingers:



On my inspirational pillow!

My friend actually sent me this pillow after my first surgery for my 30th birthday
- the entire pillow in a massive parcel from Scotland to the US.
 Made with one of my very favourite quotes - it's seen a lot in those 3 years!





Ice became my favourite thing for a few days again!

The surgeries were:

  • carpal tunnel release 
    • a nerve release
  • deQuervain's release
    • a tendon release
  • trigger finger (thumb) release
    • a tendon release; should stop my thumb getting 'stuck' in position
  • wrist arthroscopy
    • "cleaned out a load of junk"
    • "junk" = inflammation & frayed/ damaged/ dead tissue

These all essentially create more space in an area so nerves/ tendons/ joints aren't being 'squeezed' by too much inflamed tissue making movement extremely painful/ impossible.

My surgeon has said the surgery went very well - and he was pleased not to find any torn ligaments, which he thought were a possibility.  



Incision photos below  

I must admit, there's something a little satisfying about these for me.  My shoulder was so neat and barely bruised with very little swelling with both ops - even the scapular one, which was major surgery...... ok, I have my 18 staples photo but it really doesn't look like it FELT.  This............. this pretty much looks like it feels!  

After I showed my Dad the incisions on Tuesday, he said "Now I understand why you're sore." (And made appropriate "ooft" noises".)  My Mum said - "Did you not believe her?!"  So............ justification! This HURTS right now!

(P.S. My right shoulder/ side still HURTS too............. and it's pretty useless. I suppose it wasn't magically going to come to life because the other side is suddenly totally out of commission!  It's trying - I'm trying -  really; but 'we' were trying before this; always trying - and it's still as useful - or as useless! - as it was last week, or the week before.  My head is becoming as useful as my feet - really! - but I have consciously had to stop using my teeth or I am going to break them on something!  It's pretty frustrating.)


Each cut is a different thing from the list above (there's still a lot of marker pen; I think the surgeon just liked drawing!):

Bottom of thumb: trigger finger release - there are stitches you can't really see for the ink (& blood)

Base of palm: carpal tunnel release

Quite a bit of bruising, even on my hand, which is kind of unusual for me as generally don't bruise much - more justification for the pain I have!  Got lots of arnica!




deQuervain's
 release along lower forearm/ wrist - still covered

Arthroscopic incisions on the top of my hand

Surgeon removing the stitches from the arthroscopic incisions

Incisions/ stitches re-covered after surgical dressing was removed


Custom made splint

Watched as the therapist made this, shaped it to my wrist/ thumb; reheated
the plastic (in hot water) again, re-molded it to my wrist; fitted it, reheated to cut
to size; repeat until the perfect fit  -  it was pretty cool!

Back next week to get the rest of the stitches out and the splint readjusted.  

And I should make a confession....... I don't know why; it's not the worst pain I've had - it wasn't even the worst pain I had right then; but after I'd photographed my surgeon removing my stitches, had a good look at my gory incisions and bruises (& I know they're not the worst - but I was expecting 4 dots and two 1cm incisions - that's what he drew on me in the appointment prior to surgery!); we went through to the therapy room where I'd get my splint, sat down and kind of suddenly, I said to my mum, "I don't feel great."  She told me to put my head down on the table.  Less than a minute later, she told me to put my head between my legs.  Ugh.  There were OTHER PEOPLE there.  I know I get severe pain responses with my right shoulder - but that's usually when I'm trying to make it work hard - or someone else is.  This just washed right over me for no apparent reason until the room was swimming.  Fast.  Head down, the therapist (who was doing about ten things at once) came over pretty quickly.  Next thing I was 'assisted' through to a separate room and laid on a bed with ice on my neck and my feet up........... and given a (compulsory) lollipop!



Note my Mum smiling!

(Just because she's the one who usually passes out!)


The quote from my pillow -  always good advice - words to live by: 



“Learn from yesterday,
live for today,
hope for tomorrow."


   ~  Albert Einstein   ~




Friday, March 20, 2015

Here I go again...........

Wrist Surgery


As I sit and type at 7.30am - for a change, after I have been asleep and not before! I am all ready to leave shortly for the surgery centre - today I am having surgery on my wrist.  I am up early, ready (no makeup, no 'beauty products like perfume/ body cream etc.; no food and nothing to drink) - incredibly sexist comment - this must be what it feels like when a man gets ready. I did sort out my clothes last night - although still have no idea what I'll actually be able to put on afterwards - but I don't even think it took me 5 minutes to get ready. Add a couple more minutes for when I brush my teeth.

The reason I am ready early is because we have snow forecast.  Between 3 and 5 inches have to fall -"starting around the end of the morning rush hour".  At my last appointment with the surgeon, it took us 2 hours to do a usually-40 minute journey because we were driving through an ice storm of freezing rain.  Well, crawling really, long with everyone else.  I don't have to be there until 10 and usually leaving at 9 would give loads of time, but according to the weather-travel man, this is what Rt 202 looks like right now:


And that is the road we are going on.  Actually when I woke up my first thought was
'has it snowed yet?!' and I looked out the window and it hadn't, I felt relieved - we know it's probably not going to be great on the way back later, but I definitely want to get there on time. Now, everything is white outside my window.  I reckon about 1/2" of snow has fallen in 20 minutes.  And believe it or not, I'm just ready to go when everyone else is ready! (I am always forgetting how long things take me just now and constantly running late.)



Anyway.............  A few of my friends have asked me to update them on the wrist surgery, and I am sorry for not writing personal replies to every email - I hope this little update will cover it!


It's really not a big deal (so I'm told).  When I fell and landed with my weight on my left wrist - my 'good' wrist - last November I joked that at least I hadn't made the other side worse.  After calling it a sprain for 4 months while the shooting pains from elbow to fingertips intensified and became more tingly, and constantly achy; and while my ability to do....... pretty much anything involving any strength from either arm........... all but disappeared; my physio and I decided perhaps it would be wise to see an ortho.  

I can also advise - if you have an injury, and you fall, do everything possible to throw yourself on the already injured side.  ONE good side is definitely a necessity (yes, two would be better).




Initially I saw a general ortho, he ordered wrist/ arm/hand/elbow x-rays and MRIs but nothing obvious showed up.  I wish I could say I take comfort in that, but it has unfortunately happened in the past.......... for example when the rhomboids and trapezius detached from my scapula! And a few times over the years with gymnastics injuries - usually broken bones that didn't show up, but became apparent later.  I'd like to think anything major would show up, but I also know not to place all faith in medical imaging.

Back to the wrist........ after more physio, some exercises, strength building etc., it still was not getting better and I was sent off to a hand specialist.  I opted to continue with PT for a while and see if it would continue to improve - there are definitely areas that were painful initially that are improved now; but there are also areas that have been sore the entire time, and movements I can't do with it - especially involving my thumb.  When I saw the surgeon again a couple of weeks ago, we talked about surgery again and he told me what he expects to find inside.

He also said - and my brain keeps telling me -  it's really not a big deal after the other ones  I've had (although I do keep reminding myself it WILL still hurt, since he will be going in through multiple incisions and cutting stuff up - I don't want to wake up in recovery and think......... hold on a minute, this one wasn't going to hurt.... and it does!!  But it certainly shouldn't be as bad as the last one even, never mind the first one - and it should heal much faster).  His plan is to go into my wrist (on the top) arthroscopically and clear out any inflammation or dead bits of tissue that may have accumulated, and - he thinks - probably repair a couple of ligaments that are possibly torn a little, as well as 'releasing' a couple of tendons around my thumb - it seems they are being compressed, causing pain and the tingling sensations.  Somehow they just make a gap a bit bigger......... I'm not exactly sure how, and I'd prefer to learn about that AFTER it's over - works better for me, for the gory bits (which only become gory once I have the surgery scheduled and I will be the one in that OR; up until that point, everything I read is fascinating!).


This week, my lower arm and hand have sporadically been swelling up and producing little bruises.  I do think it's sorer than I really think it is (if that makes sense) because I'm on such strong medication because of my right shoulder, I shouldn't really be able to feel minor pain - but I can most definitely feel this, which is not good.  Even my physio can feel it grinding and clunking and has taken to making his 'puzzled face' this week with the sudden bruising - after 4 months!  And I don't really bruise........  Hopefully the surgeon has it spot on and will just go in, tidy it up, I'll be sore for a couple of weeks and then I should be fine - doing PT and strengthening it, but both surgeon and PT think that this will 'fix' things; I will have minimum, if any, pain after it has been fixed - and it will be/ should be fixed; he doesn't expect me to have any further problems with it as long as the surgery goes as he expects.

I feel that it is just screaming at me: FIX ME! and - let me stress this very carefully - I NEED ONE GOOD SIDE!!


Anyway, hopefully all goes to plan and I will sleep through most of the weekend and feel fine (on that side of my body) pretty quickly.  I do go back for post-op on Tuesday for him to check it and change my bandages and hopefully he will then give the ok to start PT after a week.

So that's a pretty boring blog post, an update, as promised, I suppose.  When I can, I will update again/ be in touch.

Have fun with those limes! ;-)



If I've learned anything, it's this -and I can't wait to get mine back; I am working SO hard on it:



The first wealth is health!

~ Ralph Waldo Emerson

Thursday, March 19, 2015

#takeabiteoutoflyme - my final post, pics and facts


The Lyme Disease Challenge continues throughout March......... Maybe beyond.....


March has been about the Lyme disease challenge: #takeabiteoutoflyme.  I had a few 'issues' with my shoulder/ scapula last week so I didn't manage to do the editing and writing for the sequence I'd planned - but here they are, better late than never!  I'm wrapping things up - for myself - in terms of the challenge because I am having wrist surgery on Friday.  I plan to write a quick post about that before then, right now it's back to Lyme awareness


Here are my final two photos and facts:







I don't often crossover between the Lyme FB page I set up and my personal stuff, but it seems appropriate here.  This was written for GoLymeGreen - the facebook page I will use to bombard everyone with more information come May, while also trying to talk you into changing your cover picture or profile picture green for Lyme awareness (if you could like the page, that would be great! :-D

Obviously this blog was set up to share my journey recovering from Lyme disease - and what a journey that has been.  It is definitely known for being tough and challenging, but flying 5000+ miles and then driving 650 miles for shoulder surgery isn't usually part of the package - never mind multiple shoulder surgeries, and now wrist surgery...........  But back to Lyme.  

A very quick version of my story is: 

2005: I went from being totally healthy, bounced everywhere, was doing my MSc with plans (& a scholarship) to do my PhD and absolutely loving my life to barely able to walk within weeks.  My mum moved back across the pond to help me - and by help me, I mean literally walk me up the stairs and in the door to university meetings; to cook for me, to wash my hair while I lay on the worktop with my head in the sink.  I went from bouncy to zero in record time.

2005-2008:  I applied for a visa that let me live with my parents in the US for an *intended short time* so I could 'recuperate' and then return to my PhD.  I continued to get sicker and sicker. I lost my scholarship. I could not walk.  I needed to use a wheelchair when we went out.  I had days where I was completely bedbound.  I had a 'diagnosis' of 'CFS'  - here's a look at that: "But you don't look sick...."

2009: By sheer luck my Dad got a job in Pennsylvania. I discovered Lyme Disease. I had my blood cultured and found out I had spirochetes in my blood - a type of bacterium that can 'screwdriver' its way through every cell in the body with its spiral-shaped 'tail'.  This infection had been taking over my body for at least 4 years  - it was systemic, making it much harder to treat.  I found a wonderful Lyme doctor.  I discovered Lyme disease had caused my 'CFS' symptoms; and I discovered that EVERYONE here actually knows what Lyme Disease is - even if they are also a bit sketchy on details; but let's face it, so are the 'experts''.  There is simply not enough known about Lyme disease although it is the most complex bacterial DNA that has ever been sequenced, and it is emerging as the number one growing infectious disease in the world.  That means it's important to pay attention - and, PLEASE, bite that lime!

2009 - now: I continue to work towards better health.  My health has improved exponentially.  I have had some complications and some set-backs, but I am determined to get healthy again - and determined to do all I can to increase awareness of this disease - which can cause permanent disability and death, if it is not treated.  







From GoLymeGreen:


I'll be honest, I didn't know how the challenge was going to go - were people going to ignore it because they'd never heard of Lyme disease, or because they simply can't do every 'challenge' for every charity that they come across online?  Would it be confined to the 'Lyme community' - patients and those who are very close to us and see, firsthand through our own suffering, how destructive Lyme can be?  How much life it steals from us? And would that really raise much money - those people (us!) are so busy trying to pay for expensive treatments, as much as we wish we could donate so much more to ILADS, we need to get better - and that's expensive.  Would this challenge really raise awareness?  If it was simply circulating within 'our' community, would we really be reaching others?  Would we really be increasing awareness?  Would it actually work?


My personal view was to give it a go anyway, to try to swamp every social media account I have with photos and nominations, to share others' photos and messages on here, and to do my bit to try to make it work, because the wonderful organisers of The LymeDisease Challenge  have worked so very hard in putting this together.  And they have done it! 


The number of people from around the world who have posted photos of them biting a lime shows just how MASSIVE a problem this is.  It shows how much this challenge - and even moreso, awareness - is needed. It shows that #LymeISeverywhere - it IS in Australia; is IS in the UK (everywhere, not just the hills of Scotland); according to various sources, I have even learned this month that the bacterium that causes Lyme has been found in Antarctic penguins!


I am touched, personally, by my friends and family who have taken part, who have shared a fact, dressed up in funny clothes (sorry, 'normal' lime green clothes - you know who you are!) and who have not just bitten into a lime; nor have they 'just' spread awareness - they have helped to create *HOPE*


(And they will be featured in a collage very soon - watch this space!)



*HOPE*, that even this crazy, strange disease that can take years to diagnose; is inexplicably ignored; is too often untreated for far too long, wreaking havoc on people's lives - destroying people's lives -  IS being talked about GLOBALLY.  Famous athletes and singers and celebrity personalities have all added their support to the campaign too - increasing awareness and spreading *HOPE* by reaching their fans across social media.  We have *HOPE*, that by increasing awareness and by raising funds, there will one day, be an effective treatment for Lyme - and ideally one that isn't as bad as the bloody disease itself!  *HOPE* for a test that can accurately diagnose Lyme*HOPE* for a treatment that doesn't take YEARS to eliminate years of bacterial colonisation, damage, and destruction in the body.  *HOPE* that people will understand a little more about Lyme because they are learning facts about it.  *HOPE* that this will create more understanding - for those of us dealing with an illness that we struggle so much with in every way.  That *HOPE* is so important. *HOPE* is life saving; it is what we live for. *HOPE* is what keeps us going. Along with those who support us. Sometimes, *HOPE* is what keeps our loved ones going too.

So please, if you read this, consider yourself nominated. Go to lymdiseasechallenge.org and follow the directions - #takeabiteoutoflyme, post a funny picture with the hashtag: 

#takeabiteoutoflyme 

and make it public so everyone can see. Share it on twitter, instagram, personal blogs - anywhere! - and don't forget to nominate others to do the same! Help us spread awareness, and please consider donating if you can. Please help us continue to *HOPE*.


Please visit www.lymediseasechallenge.org to learn more and please help spread awareness of Lyme disease.  


Lyme disease has stolen the last decade of my life - you can help prevent it doing that to anyone else.





“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.”

  ~ Emily Dickinson

Monday, March 9, 2015

#TakeABiteOutOfLyme 3


#Takeabiteoutoflyme and do the #Lymediseasechallenge - details below!


Today's Lyme fact:

Lyme Disease is known as 'the great imitator' - a name that was associated with syphillus in the 19th Century.  Both diseases are caused by a type of bacteria called a spirochete - shaped like a snake from a snakes-and-ladders board: a head with a 'curly' tail.  This tail allows itself to move from cell-to-cell, using it in a corkscrew-type movement.  The bacterium's ability to do this is what can make it so difficult to diagnose, especially in later stages of the disease when the spirochetes have invaded many different cells in the body, causing multiple symptoms in multiple areas. 

Borrelia bacteria can cause neuroborreliosis when they infect the brain; in some cases this can be extremely serious and cause permanent damage, including, blindness and paralysis; other extremely serious conditions caused by borrelia include different heart conditions - this can cause damage to heart tissue that is so severe heart transplants are required.  Left untreated, Lyme disease can be a fatal disease.






A prominent doctor in the Lyme community is Dr Richard Horowitz who has proposed the name 'Lyme-MSIDS' where 'MSIDS' stands for 'Multi Systemic Infectious Disease Syndrome'.
(See slideshow here.)

This name is very apt and many patients feel it should be adopted as it is far more encompassing and reflects more truth about what is generally known as 'Lyme'. Very often, particularly in patients who are seriously ill, there are multiple infections to treat and recognising this does help explain, in some cases, why the person is extremely ill, and why treatment can take so long.  Ticks carry more than 'just' Lyme Disease - they carry some other nasty bugs too.

#takeabiteoutoflyme



The #LymeDiseaseChallenge doesn't require a personal invitation, so I nominate everyone reading to take part, or to make a donation to ILADS.


The challenge is easy - 

1.Take a bite out of a lime & share the photo on your own facebook page or other social media outlets  - if there's no photo, it didn't happen! The funnier, the better; you may want to take a series of photos for a mini collage! Please remember to hashtag #takeabiteoutoflyme 


2.Share a fact - help spread information about Lyme Disease
(For some facts, see: http://www.lymediseaseaction.org.uk/about-lyme/ )


3.Pass it on!  Nominate 3 friends to #takeabiteoutoflyme and support Lyme Disease Awareness


Please consider making a donation to ILADS, and international charity voted for by Lyme sufferers to benefit from this awareness campaign.  Find out more here: 
http://lymediseasechallenge.org/spread-hope-lyme-disease/


You can also share, reblog, retweet, or just join in if you feel like it - 



It's an open invitation!



Please help us beat Lyme Disease! 


(I'm posting my photos frame by frame so I can nominate more people and add another fact each day - so watch this space........!)





"You must be the change you wish to see in the world."

 Mahatma Gandhi ~

Sunday, March 8, 2015

#TakeABiteOutOfLyme 2



My photo and fact for today: 





There are no definitive blood tests for Lyme Disease.  Current Lab tests are not reliable and give many false negatives.  This is because they are antibody tests and can only look for evidence of the presence of the Borrelia bacterium that causes Lyme Disease, not an active infection; nor evidence of infection in people whose immune systems have not produced antibodies.  Some people simple do not produce antibodies  -  the bacteria can hide from the immune system and multiply, hidden - this means the immune system won't produce antibodies and the test will be negative - even although the person may be severely ill.


It is also, therefore, impossible to distinguish between an active infection and prior exposure to the bacterium.  As with most illnesses, some people do not become severely ill with Lyme Disease; in some, they find a tick, or develop a bullseye rash (the only known definitive indicator of Lyme) - these are the lucky ones; the ones who are (in areas where doctors are well informed about Lyme) given antibiotics immediately; often, but not always, stopping the disease in its tracks.  For those (like me!) who are diagnosed in the stages of a late, systemic infection, diagnosis and treatment are much more complex.


This is why it is so important - for both the general public, and doctors - to understand how to identify and treat Lyme Disease early.  Please support Lyme awareness!  And if you can, please consider donating to ILADS (International Lyme and Associated Diseases Society - details are below.





The #LymeDiseaseChallenge doesn't require a personal invitation, so I nominate everyone reading to take part, or to make a donation to ILADS.


The challenge is easy - 

1.Take a bite out of a lime & share the photo on your own facebook page or other social media outlets  - if there's no photo, it didn't happen! The funnier, the better; you may want to take a series of photos for a mini collage! Please remember to hashtag #takeabiteoutoflyme 


2.Share a fact - help spread information about Lyme Disease
(For some facts, see: http://www.lymediseaseaction.org.uk/about-lyme/ )


3.Pass it on!  Nominate 3 friends to #takeabiteoutoflyme and support Lyme Disease Awareness


Please consider making a donation to ILADS, and international charity voted for by Lyme sufferers to benefit from this awareness campaign.  Find out more here: 
http://lymediseasechallenge.org/spread-hope-lyme-disease/


You can also share, reblog, retweet, or just join in if you feel like it - 



It's an open invitation!



Please help us beat Lyme Disease! 


(I'm posting my photos frame by frame so I can nominate more people and add another fact each day - so watch this space........!)





"You must be the change you wish to see in the world."

 Mahatma Gandhi ~