Well, it's been a while. My lack of blog posts has been completely due to my lack of willingness to reflect on my life right now. I am going to ease myself in gently and keep this short.... limit the risk!
My shoulder is wrecked. 24 weeks ago today I slipped and I can't believe the amount of damage I did with what seemed like a very simple thing. I am still in a huge amount of pain, I have a ridiculous tolerance to painkillers so nothing is really providing much relief. And I don't really have any satisfying answers or solutions to the problem right now. In short, the sports physio and sports injury/ shoulder specialist think that because of the flexibility and hypermobility I have in my shoulder I have done a massive amount of damage that would actually have been limited in a 'normal' (yes, that word was used!) person by the rotator cuff tearing. So I still have a very heavy arm - which is not supported by my muscles and tissues as they have all been overstretched - pulling on a fractured bone. Because of the healing time the joint is highly unstable. So right now I am still hoping it is going to heal, but joint stabilization surgery is a worst case scenario.
I can't believe the impact the injury has had on me. Being in constant, at times (still often) severe, pain is exhausting and not being able to use my right arm is disabling. I have gone from being almost back to normal, even if my pace was just a bit slower, to having to depend on other people again for so much. I cannot put into words how frustrating this is for me... so I'm not even going to try right now.
My Lyme symptoms are still bubbling away beneath the surface, but I feel they are manageable now. I know how to deal with them - when to fight them and when to give into the fatigue; but I do still feel like I am winning the Lyme fight. And I do find more people seem to have heard of Lyme now, although most still don't really know very much about it.
My experience with my shoulder has been interesting in terms of the doctors I have seen and the advice I have received. A shoulder surgeon took my medical history, told me this was "not like being told you have chronic fatigue syndrome when you have Lyme disease", barely examined me, implied I was a hypochondriac and told me I might just have to "learn to live with it". Two days later I saw the sports/ ortho specialist who showed me the fracture on the MRI, thoroughly examined BOTH shoulders, said my flexibility had been a major factor and discussed conservative and surgical options with me. Same clinic, exact same room actually - and both (out of sheer desperation) private appointments. It seems (to some doctors) a CFS or Lyme label just signifies a CRAZY stamp on my forehead.
That really just makes me want to educate people even moreso. Can't wait until I have the energy for that....
Wednesday, November 30, 2011
Tuesday, July 5, 2011
At least I don't need surgery!
So if I'm looking on the bright side I don't need surgery. Initially my injury seemed to be my rotator cuff and that might have meant an operation, so the the good news is my MRI for my shoulder was clear.
However after delivering that good news, the orthopaedic then said, 'but I think you've fractured your scapula.' Which was totally unexpected as I did not think it was possible to fracture something the way I fell. As I am typing entirely left-handed I'm going to cut the long description, but basically I grabbed the railing as I fell to stop myself and have done all the damage dangling my full body weight from my arm.
I have also torn my serratus anterior muscle which connects to the ribs and the scapula and controls movement of the arm, so I have virtually no use - still! - of my right arm.
Flights home have been delayed (now home 4th August) and my US visa extension has been filed (although it takes about 4-6 weeks to process, minimum, so I should be home by the time they even view the application, but it had to be filed before 4th July so I was not here illegally). The timing could not really have been worse!!
I see the ortho again next week and I am seeing the physio 3 times a week. He is doing a lot of passive movement with my arm so that my shoulder doesn't freeze up and make things even worse. I have some gentle exercises to do as well but I feel a bit pathetic trying them - I couldn't even lift a 1lb, yes ONE, weight!! And it's not that I can't do things because it's too sore, I just can't physically engage my muscle. (Although it does hurt like hell.) If I were a puppet, it would be like the string to my right arm has been cut. I'm sure the ortho thought I was a complete weakling until he finally asked me to do things with my left arm and then realised I had actually been trying and I did actually know what he meant...
So now I have another month in the USA. It seems odd, I have no plans because I'm not supposed to be here and all plans at home had to be cancelled so I feel in this really weird place in time right now. Not that I'm actually able to do very much. My most exciting thing is that I am going to be able to taste my tomatoes and watermelon I have in my garden!
And thankfully my new Lyme abx (azithromycin) are making a big difference and I am feeling much better in that respect. I am also so grateful that my doctor found a sleeping tablet that works for me before this injury happened. Not that I really want to be taking them for long, but I don't know how I'd be coping without them right now.
Some garden photos:
Happy (and fast) healing everyone!
However after delivering that good news, the orthopaedic then said, 'but I think you've fractured your scapula.' Which was totally unexpected as I did not think it was possible to fracture something the way I fell. As I am typing entirely left-handed I'm going to cut the long description, but basically I grabbed the railing as I fell to stop myself and have done all the damage dangling my full body weight from my arm.
I have also torn my serratus anterior muscle which connects to the ribs and the scapula and controls movement of the arm, so I have virtually no use - still! - of my right arm.
Flights home have been delayed (now home 4th August) and my US visa extension has been filed (although it takes about 4-6 weeks to process, minimum, so I should be home by the time they even view the application, but it had to be filed before 4th July so I was not here illegally). The timing could not really have been worse!!
I see the ortho again next week and I am seeing the physio 3 times a week. He is doing a lot of passive movement with my arm so that my shoulder doesn't freeze up and make things even worse. I have some gentle exercises to do as well but I feel a bit pathetic trying them - I couldn't even lift a 1lb, yes ONE, weight!! And it's not that I can't do things because it's too sore, I just can't physically engage my muscle. (Although it does hurt like hell.) If I were a puppet, it would be like the string to my right arm has been cut. I'm sure the ortho thought I was a complete weakling until he finally asked me to do things with my left arm and then realised I had actually been trying and I did actually know what he meant...
So now I have another month in the USA. It seems odd, I have no plans because I'm not supposed to be here and all plans at home had to be cancelled so I feel in this really weird place in time right now. Not that I'm actually able to do very much. My most exciting thing is that I am going to be able to taste my tomatoes and watermelon I have in my garden!
And thankfully my new Lyme abx (azithromycin) are making a big difference and I am feeling much better in that respect. I am also so grateful that my doctor found a sleeping tablet that works for me before this injury happened. Not that I really want to be taking them for long, but I don't know how I'd be coping without them right now.
Some garden photos:
My "fairytale eggplant" (aubergine) - it grow this pretty striped way!
"Sugar baby" watermelon, hopefully ready to eat soon!
Almost red tomatoes... so much for "early girl" though, I had thought I'd have some of these by June.
My Mum took one of me in my sling in the garden... must get it from her. Meanwhile I have all my beautiful flowers (all grown from seeds this year) to make me smile:
Thursday, June 23, 2011
I think the universe hates me...
This will be a very brief post as typing is very difficult with one hand.... yesterday I fell downstairs, was holding on to a high banister/ railing that goes along the top of the stairs, slipped and gripped to try to save myself and totally wrenched my shoulder. When I landed, on my bum 2 stairs down, my arm was stuck in the air and my mum had to lower it for me. In short I have a suspected torn rotator cuff, an MRI appointment tomorrow, orthopaedic appointment on Monday and am really really hoping it's not going to need surgery. The pain is very bad and had me squealing and crying with any movement earlier tonight. The timing is awful - I fly home a week on Sunday, I have lots to do - none of which is getting done at the moment as I really need the use of both arms for most things...And sitting in the car in a small space and going over bumps was dreadful today; the thought of a transatlantic flight is not a pleasant one. So I am hoping for some sort of miracle and speedy recovery over the next few days otherwise I have no idea what my plan is.
And, of course, Lyme-wise I'm feeling a bit better again, typical! New antibiotics really seem to be helping and I am feeling as if I'm on an upward slope again at the moment. I really do think the universe hates me.... can't it all just be good for a while?!
And, of course, Lyme-wise I'm feeling a bit better again, typical! New antibiotics really seem to be helping and I am feeling as if I'm on an upward slope again at the moment. I really do think the universe hates me.... can't it all just be good for a while?!
Friday, June 10, 2011
New Antibiotics... third time lucky?
Yesterday I started my third - and hopefully final - type of antibiotic. I am now taking azithromycin, a newer drug related to the one I have just stopped. This one is stronger and has more bio-availability (see the things you have to learn and understand when your Mum's a pharmacist and goes to Dr appointments with you... I'd rather learn it than sit in the appointment and have everything pass over my head... although it still does that sometimes!) Anyway... basically that means I get the same, or better, abx action from only one dose a day. This is very pleasing to me - no more eating at midnight and 6am... just one tablet, at dinnertime. Easy. So hopefully that will really help my stomach and prevent it getting irritated again. The newer drug has fewer gastrointestinal side effects too so that should all help.
So I started taking it yesterday and then last night my legs got sore and I started feeling sick again. Reactions I have experienced on abx and herbal abx and I associate with herx reactions. Today I felt sick most of the day, managed to go out with the use of anti-nausea tablets but eating, even when I felt hungry, made me feel nauseous again. I hope this is just a temporary thing... I have finally got my weight at a number I am happy with. I really don't want to lose more weight again because I can't eat.... I am 18 pounds heavier than I was a year ago and my size 0 clothes are all fitting me very nicely right now!
There was a bit of a debate over whether or not I should go back on abx now. If I wasn't planning to go home in the summer and go back to uni it is likely I would have waited another couple of months as my Dr suggested, although he realises my circumstances are a little unusual. I decided I would much rather make sure I'm as well as I can be when I start my PhD in September rather than messing about with abx again then. He understands this and is happy for me to do that just now and then we will re-evaluate when I see him again when I come over to visit my parents at xmas.
So now that I seem to be having herx-type reactions again I feel quite glad that I have started them because the fear is always that if the Lyme infection is still there, it will gain strength and some work will have to be repeated to get rid of it. I was afraid waiting another couple of months might take me back too many steps again so in a way the herx reactions make me think this is the right decision - that the abx are getting to work right away and there is (unfortunately) stuff for them to do. There is really no way to know though.... so frustrating.
Anyway, I also have new sleeping tablets and they seem to be working. It is just before 1am and I can feel myself dropping off, so I'm going to take advantage of that! Hope I get a good night's sleep!
"To sleep, perchance to dream....."
So I started taking it yesterday and then last night my legs got sore and I started feeling sick again. Reactions I have experienced on abx and herbal abx and I associate with herx reactions. Today I felt sick most of the day, managed to go out with the use of anti-nausea tablets but eating, even when I felt hungry, made me feel nauseous again. I hope this is just a temporary thing... I have finally got my weight at a number I am happy with. I really don't want to lose more weight again because I can't eat.... I am 18 pounds heavier than I was a year ago and my size 0 clothes are all fitting me very nicely right now!
There was a bit of a debate over whether or not I should go back on abx now. If I wasn't planning to go home in the summer and go back to uni it is likely I would have waited another couple of months as my Dr suggested, although he realises my circumstances are a little unusual. I decided I would much rather make sure I'm as well as I can be when I start my PhD in September rather than messing about with abx again then. He understands this and is happy for me to do that just now and then we will re-evaluate when I see him again when I come over to visit my parents at xmas.
So now that I seem to be having herx-type reactions again I feel quite glad that I have started them because the fear is always that if the Lyme infection is still there, it will gain strength and some work will have to be repeated to get rid of it. I was afraid waiting another couple of months might take me back too many steps again so in a way the herx reactions make me think this is the right decision - that the abx are getting to work right away and there is (unfortunately) stuff for them to do. There is really no way to know though.... so frustrating.
Anyway, I also have new sleeping tablets and they seem to be working. It is just before 1am and I can feel myself dropping off, so I'm going to take advantage of that! Hope I get a good night's sleep!
"To sleep, perchance to dream....."
Saturday, June 4, 2011
Fix you
After Mark (markintheparkblogs) commented on one of my previous posts I had a look on his blog. I am always interested in other people's stories, especially Lyme-related ones, but also ones that refer to other "invisible illnesses". I think there is a lot of comfort in finding other people who have similar experiences and I especially like reading about people who are winning their own personal battles - nothing like a little motivation and inspiration.
In one of Mark's blog posts he talks about awareness (not of Lyme) and has posted a video of Coldplay's "Fix you" to illustrate his point. This is a highly emotional song and I had not paid such close attention to the lyrics before, but they rang so true with me in so many ways. I have heard the song before though and remembered it was used in a particularly emotional (read: me bawling at the TV) dance on So You Think You Can Dance last year. The video is here:
There is a fuller excerpt from the TV show here but I couldn't seem to find that video to insert.
The lyrics can be seen here:
I think the song and the lyrics really capture the frustration of feeling like you would like to be able to do something but you can't. Whether it is fixing yourself, or someone else, or knowing that there are people who would like to be able to fix you, the song seems to speak to everyone.
And watching the SYTYCD video just makes me excited for the new season. I watched the first episode a few days ago....... the auditions are definitely NOT my favourite part of the show but it means the good bit will be here soon. And while I wait for that I can enjoy some highlights of past seasons on YouTube.
Some of my very favourite performances:
And leaving it on a cheerful note:
Can't wait until I can dance like that again!
In one of Mark's blog posts he talks about awareness (not of Lyme) and has posted a video of Coldplay's "Fix you" to illustrate his point. This is a highly emotional song and I had not paid such close attention to the lyrics before, but they rang so true with me in so many ways. I have heard the song before though and remembered it was used in a particularly emotional (read: me bawling at the TV) dance on So You Think You Can Dance last year. The video is here:
There is a fuller excerpt from the TV show here but I couldn't seem to find that video to insert.
The lyrics can be seen here:
I think the song and the lyrics really capture the frustration of feeling like you would like to be able to do something but you can't. Whether it is fixing yourself, or someone else, or knowing that there are people who would like to be able to fix you, the song seems to speak to everyone.
And watching the SYTYCD video just makes me excited for the new season. I watched the first episode a few days ago....... the auditions are definitely NOT my favourite part of the show but it means the good bit will be here soon. And while I wait for that I can enjoy some highlights of past seasons on YouTube.
Some of my very favourite performances:
And leaving it on a cheerful note:
Can't wait until I can dance like that again!
Friday, May 27, 2011
Project overload
I am not really very good at blogging... I keep forgetting to do it. And then I'm never really sure what to talk about when I click "new post"... which is unusual for me!
This week has really been about two things: crafting and sleeping, or lack of sleeping actually.
I have started multiple craft projects which I intend to finish before I go home to Scotland - a quilt, many cushion covers, pillow cases (to match the quilt), handmade cards, multiple jewellery projects, my gardening... and I'm sure I have a few more on my list as well. I think I may have been a little over-ambitious although I am making progress.
My main obstacle is actually my complete and total inability to use a sewing machine - although I am improving each day. However I have not gone back to it since it attacked my finger a couple of days ago... that was momentarily terrifying as I felt a pain in my finger, instinctively shut my eyes, took my foot off the pedal and pulled my hand away before tentatively opening my eyes to view the carnage. Thankfully there wasn't really any carnage - and more thankfully no blood all over my nice new quilt! - the damage seemed to have been contained inside the lovely blood blister that had formed, decorated by a nice purple bruise. It was definitely sorer than it looks. I'm really sure the machine hates me.
All of last week I was tortured by insomnia. After putting my light out around midnight each night I tossed and turned for several hours, feeling so tired and wanting nothing more than to fall into a deep sleep but it just didn't happen (despite trying every sleeping tablet/ herb - and combination - that I could think of). It was at least 7am several nights (/ mornings) in a row before I managed to fall asleep. I kept thinking I should just get up at 7am but I was SO tired, and I did manage to sleep for several hours after that. It's easy to think then that was messing up my sleeping pattern, but after sleeping until about 2pm, it would get to 9pm and I was just SO tired again so every night I thought, I have to sleep tonight.
It just didn't happen, so on Saturday night I stayed up all night. Fuelled by several cups of coffee I stayed up and worked on craft projects all night (I avoided the sewing machine, sleepiness and that machine would definitely be a disaster). The hardest part was actually staying awake all day Sunday, but I (barely) managed and was asleep by 8.30pm Sunday night. I slept until 4am and then - still feeling tired - tossed and turned for several hours before falling asleep again around 8am for a few hours. I still didn't really feel rested when I woke. Then the next night it was 1am, then 2am, last night 3am and I am really hoping I fall asleep before that tonight (it's already almost 1am).
My body clock seems to be on a totally different time zone. My doctor reckons somewhere in Alaska. I do kind of wonder if I went there, would it stay on its current time zone, or mess me up even more?!
Ultimately, I think this is all connected to the fact I have been off the antibiotics for a month. My stomach is feeling much better, but I think the optimistic idea that perhaps I would be finished with the antibiotics for good was a little, well, optimistic.
I do feel this month has been kind of horrendous. I think the insomnia has really exacerbated everything, but my energy levels have been quite low again and lots of aches and pains and odd sensations are back. In one way I'm just really annoyed, I can't believe I can just drop this quickly with no antibiotics... however, the good thing is that I have now tried to stop them while I am here, with my Lyme doctor close by and that it is easy to start them up again (and hopefully easy to get back to where I was a few weeks ago as well). It would have been much worse to be dealing with this when I am back home and have far more to be dealing with then.
Fingers crossed the next few weeks see some massive re-improvement.
This week has really been about two things: crafting and sleeping, or lack of sleeping actually.
I have started multiple craft projects which I intend to finish before I go home to Scotland - a quilt, many cushion covers, pillow cases (to match the quilt), handmade cards, multiple jewellery projects, my gardening... and I'm sure I have a few more on my list as well. I think I may have been a little over-ambitious although I am making progress.
My main obstacle is actually my complete and total inability to use a sewing machine - although I am improving each day. However I have not gone back to it since it attacked my finger a couple of days ago... that was momentarily terrifying as I felt a pain in my finger, instinctively shut my eyes, took my foot off the pedal and pulled my hand away before tentatively opening my eyes to view the carnage. Thankfully there wasn't really any carnage - and more thankfully no blood all over my nice new quilt! - the damage seemed to have been contained inside the lovely blood blister that had formed, decorated by a nice purple bruise. It was definitely sorer than it looks. I'm really sure the machine hates me.
All of last week I was tortured by insomnia. After putting my light out around midnight each night I tossed and turned for several hours, feeling so tired and wanting nothing more than to fall into a deep sleep but it just didn't happen (despite trying every sleeping tablet/ herb - and combination - that I could think of). It was at least 7am several nights (/ mornings) in a row before I managed to fall asleep. I kept thinking I should just get up at 7am but I was SO tired, and I did manage to sleep for several hours after that. It's easy to think then that was messing up my sleeping pattern, but after sleeping until about 2pm, it would get to 9pm and I was just SO tired again so every night I thought, I have to sleep tonight.
It just didn't happen, so on Saturday night I stayed up all night. Fuelled by several cups of coffee I stayed up and worked on craft projects all night (I avoided the sewing machine, sleepiness and that machine would definitely be a disaster). The hardest part was actually staying awake all day Sunday, but I (barely) managed and was asleep by 8.30pm Sunday night. I slept until 4am and then - still feeling tired - tossed and turned for several hours before falling asleep again around 8am for a few hours. I still didn't really feel rested when I woke. Then the next night it was 1am, then 2am, last night 3am and I am really hoping I fall asleep before that tonight (it's already almost 1am).
My body clock seems to be on a totally different time zone. My doctor reckons somewhere in Alaska. I do kind of wonder if I went there, would it stay on its current time zone, or mess me up even more?!
Ultimately, I think this is all connected to the fact I have been off the antibiotics for a month. My stomach is feeling much better, but I think the optimistic idea that perhaps I would be finished with the antibiotics for good was a little, well, optimistic.
I do feel this month has been kind of horrendous. I think the insomnia has really exacerbated everything, but my energy levels have been quite low again and lots of aches and pains and odd sensations are back. In one way I'm just really annoyed, I can't believe I can just drop this quickly with no antibiotics... however, the good thing is that I have now tried to stop them while I am here, with my Lyme doctor close by and that it is easy to start them up again (and hopefully easy to get back to where I was a few weeks ago as well). It would have been much worse to be dealing with this when I am back home and have far more to be dealing with then.
Fingers crossed the next few weeks see some massive re-improvement.
Wednesday, May 18, 2011
An ongoing battle
A couple of weeks ago my stomach started objecting to my antibiotics again and I have had to take a month off - lots of good tummy supplements and probiotics and it is feeling much better already. I am a little disheartened by the reappearance of some older symptoms and also seemingly unbeatable insomnia (it is currently 4.25am). My sleep - when I manage to scrape a few hours - feels unrefreshing again and during the day I am so tired. I head to bed early, thinking surely I will sleep tonight and then.... here I am sitting typing this at 4.26am.
I see my Dr again at the end of the month and I do know that this is another blip in my long journey and that I will get over it and things will improve again but it just feels like such an ongoing battle at the moment. Dealing with a bad week after feeling so much better is very difficult for me. I have to reel in my thoughts before they run away from me. Sometimes keeping myself from getting carried away with worst-case scenarios seems as difficult as dealing with the healing process itself.
But, thinking rationally, I know that my journey has been more of a rollercoaster and dealing with the bad bits is a part of it. The improvements will come again, and each time they are (usually) better. And on the optimistic side, my bad weeks now are nothing like they were a few years ago, although it will be good when there are no bad weeks at all.... but really, does anyone get that?!
Thinking philosophically leads me to some appropriate quotes:
It is a rough road that leads to the heights of greatness
- Seneca
To get through the hardest journey we need take only one step at a time, but we must keep on stepping
- Chinese Proverb
And I think perhaps my mantra for life:
Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning
- Albert Einstein
I see my Dr again at the end of the month and I do know that this is another blip in my long journey and that I will get over it and things will improve again but it just feels like such an ongoing battle at the moment. Dealing with a bad week after feeling so much better is very difficult for me. I have to reel in my thoughts before they run away from me. Sometimes keeping myself from getting carried away with worst-case scenarios seems as difficult as dealing with the healing process itself.
But, thinking rationally, I know that my journey has been more of a rollercoaster and dealing with the bad bits is a part of it. The improvements will come again, and each time they are (usually) better. And on the optimistic side, my bad weeks now are nothing like they were a few years ago, although it will be good when there are no bad weeks at all.... but really, does anyone get that?!
Thinking philosophically leads me to some appropriate quotes:
It is a rough road that leads to the heights of greatness
- Seneca
To get through the hardest journey we need take only one step at a time, but we must keep on stepping
- Chinese Proverb
And I think perhaps my mantra for life:
Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning
- Albert Einstein
Monday, May 16, 2011
A reassuring article
I have just read an article on the Telegraph's website: Deadly Lyme disease on increase
While the topic is not in any way reassuring, the article itself is the most factual, accurate article I have read on Lyme in the mainstream British media. The comments under the article suggest there is a need for more, similar articles which share information about Lyme disease in the UK.
When I first got ill and had no idea what was wrong with me I searched online through lots of information and do not remember coming across Lyme and certainly didn't consider it as a possibility. (If I did come across it, I probably discounted it on the basis that I didn't have the bullseye rash, often wrongly reported as a necessary symptom for diagnosis.) I really do think that I would come across a lot more information on Lyme disease now than I did six years ago.
However, I would really like to see more articles like this one but I really want to share this article and hope many other people do too.
While the topic is not in any way reassuring, the article itself is the most factual, accurate article I have read on Lyme in the mainstream British media. The comments under the article suggest there is a need for more, similar articles which share information about Lyme disease in the UK.
When I first got ill and had no idea what was wrong with me I searched online through lots of information and do not remember coming across Lyme and certainly didn't consider it as a possibility. (If I did come across it, I probably discounted it on the basis that I didn't have the bullseye rash, often wrongly reported as a necessary symptom for diagnosis.) I really do think that I would come across a lot more information on Lyme disease now than I did six years ago.
However, I would really like to see more articles like this one but I really want to share this article and hope many other people do too.
Thursday, April 14, 2011
Tick Awareness Week
This week (from April 11th) is "tick awareness week". BADA UK - Borreliosis and Associated Diseases Association - is a fantastic charity that works really hard to spread awareness of ticks, tick awareness and prevention, and awareness of tick-borne diseases, including Lyme disease. All week they have been posting articles on their facebook page of people sharing their Lyme disease stories.
Lots of info can be found at these sites:
BADA UK
Tick Bite Prevention Week
An overview of Lyme disease in the UK and Ireland
Lyme Disease Action UK (FAQ)
Spreading awareness of Lyme disease is really important as the disease seems to be on the increase in the UK and awareness is very low. When I say I have Lyme disease, most people do not know anything about it. Because the symptoms can be so varied, Lyme is often misdiagnosed. It is common for Lyme to be misdiagnosed as CFS, like in my case, so the more people are aware of Lyme disease, the higher the chance of treating the illness quickly and efficiently instead of in its later stages when it is much more difficult to treat.
This American study found that 88% of "CFS" patients treated with antibiotics experienced some improvement.
Lyme misdiagnosed as CFS - USA study
This is a huge deal. CFS is so debilitating, has no known treatment, and some people are severely disabled and unable to work or lead any kind of normal life. Antibiotics are not expensive drugs. A simple antibiotic could make so much difference to so many people. Some doctors seem to be against using antibiotics long-term due to the risk of side effects, but in this case the benefits clearly outweigh any negative side effects. Antibiotics are given long-term for acne, so I do not see any reason why they should not be tried in these cases. I know they have made such a huge difference to me - they really have given me my life back.
If you are reading this, please tell someone else about Lyme disease. Increasing awareness may help prevent someone from becoming really ill.
Lots of info can be found at these sites:
BADA UK
Tick Bite Prevention Week
An overview of Lyme disease in the UK and Ireland
Lyme Disease Action UK (FAQ)
Spreading awareness of Lyme disease is really important as the disease seems to be on the increase in the UK and awareness is very low. When I say I have Lyme disease, most people do not know anything about it. Because the symptoms can be so varied, Lyme is often misdiagnosed. It is common for Lyme to be misdiagnosed as CFS, like in my case, so the more people are aware of Lyme disease, the higher the chance of treating the illness quickly and efficiently instead of in its later stages when it is much more difficult to treat.
This American study found that 88% of "CFS" patients treated with antibiotics experienced some improvement.
Lyme misdiagnosed as CFS - USA study
This is a huge deal. CFS is so debilitating, has no known treatment, and some people are severely disabled and unable to work or lead any kind of normal life. Antibiotics are not expensive drugs. A simple antibiotic could make so much difference to so many people. Some doctors seem to be against using antibiotics long-term due to the risk of side effects, but in this case the benefits clearly outweigh any negative side effects. Antibiotics are given long-term for acne, so I do not see any reason why they should not be tried in these cases. I know they have made such a huge difference to me - they really have given me my life back.
If you are reading this, please tell someone else about Lyme disease. Increasing awareness may help prevent someone from becoming really ill.
Sunshine and palm trees
Last weekend we went down to Florida to visit some friends. Sadly, our friend is very ill with cancer but we were pleasantly surprised by how well he is managing, and we enjoyed spending time with them both in the beautiful Florida spring sunshine surrounded by all the tropical plants I love so much.
The weather was fabulous. It was SO hot and it was funny to think that when we stayed in Florida it wasn't really considered hot until June when the humidity soars. I guess we adapt quickly. So 80 degrees in April was great, but it was really really hot - we were all struggling to imagine it could actually get much hotter! We arrived back into Newark late on Monday night to rain and winds and it has rained for the last two days although today is sunny and it is a very pleasant 68 degrees outside. Maybe spring is here at last...
I was feeling pretty good when we were in Florida, I'd had two weeks off the Samento since I knew I was going away and it just showed how much better I am. Sometimes when I'm taking Samento and it produces all the crazy herx symptoms it seems that I still have a really long way to go, but to take a break from it and feel so much better is very reassuring because it really does show that it is the herxing that makes me feel so bad and I really am way better.
So this week I'm back on the strong Samento dose again (along with all the other abx and supplements that I always take) and the herxing is back, although it's not as bad at the moment. Sometimes it seems to build up over the week that I take it, but I'm hoping that since I had such major reactions the last time this time it will be less. If that's the case, I'll just have to take an even stronger dose next time, but it would definitely be a sign of some major progress.
Some pics from Florida:
The view from our friends' garden:
Me standing in a Banyan tree at St. Pete's
Banyan trees at St. Pete's
The weather was fabulous. It was SO hot and it was funny to think that when we stayed in Florida it wasn't really considered hot until June when the humidity soars. I guess we adapt quickly. So 80 degrees in April was great, but it was really really hot - we were all struggling to imagine it could actually get much hotter! We arrived back into Newark late on Monday night to rain and winds and it has rained for the last two days although today is sunny and it is a very pleasant 68 degrees outside. Maybe spring is here at last...
I was feeling pretty good when we were in Florida, I'd had two weeks off the Samento since I knew I was going away and it just showed how much better I am. Sometimes when I'm taking Samento and it produces all the crazy herx symptoms it seems that I still have a really long way to go, but to take a break from it and feel so much better is very reassuring because it really does show that it is the herxing that makes me feel so bad and I really am way better.
So this week I'm back on the strong Samento dose again (along with all the other abx and supplements that I always take) and the herxing is back, although it's not as bad at the moment. Sometimes it seems to build up over the week that I take it, but I'm hoping that since I had such major reactions the last time this time it will be less. If that's the case, I'll just have to take an even stronger dose next time, but it would definitely be a sign of some major progress.
Some pics from Florida:
The view from our friends' garden:
Me standing in a Banyan tree at St. Pete's
Banyan trees at St. Pete's
Friday, April 1, 2011
Herx-ing and healing
Well, this last week has been pretty eventful Lyme-wise. I'm planning to fly home to Scotland at the end of June/ beginning of July and I really want to be feeling good when that time comes. I am really looking forward to going home and getting on with things, but there will be a lot to do and I want to be able to manage it all. At the moment I am still so tired and my energy levels are so low and I have other random symptoms flaring up and down all the time - I know that most of that is actually due to the herx-ing and the healing rather than the actual illness now but I would still like to hurry this healing along!
In attempt to do that I've been "pulsing" with the Samento on and off over the past month. I take a high dose of Samento for a week and then have a week off and it is producing the strangest reactions I have experienced. I definitely think it's working because I'm basically going through what feels like a week of hell and then I feel like I have taken another step forward - and each time I feel better than I felt before. But the herx-ing is really horrid. Last week it was my joints. It started off just as a kind of ache in my left hip and then one day when I put weight on my left leg it felt as if my hip was going to pop out of its socket - I was hobbling around clinging on to things again which was a very unpleasant flashback to a few years ago. Then the pain spread deeper into my hip and every so often I would get this burning feeling right into my bone that would make me break out in a cold sweat and feel really nauseous and then it would ease off. Then it travelled down my leg into my knee and ankle... then my right leg joined in. It was pretty awful. I had a hot clay bath which is supposed to draw out toxins (as clay is an adsorbent) and this seemed to draw the pain into my muscles - when I got out the bath they were so tight I couldn't straighten my legs. Then over the next few hours it all eased off.
As usual, I've been reading lots of Lyme articles and I came across one that suggested that as the Lyme moves from acute to disseminated, one of the first places it migrates to is the joints. This would fit with my doctor saying I am reaching the deepest layers of infection if I am getting symptoms at what might have been among the first areas to become infected... so it seems that perhaps I am killing off the bacteria and it is all moving out of my joints! Pretty horrible, but I'd rather it was dying off and getting cleared out than staying there.
So while all this is going on I have just been feeling wiped out again. I really feel that when my body is dealing with all of this all it wants to do is rest. I lie in bed (or on the sofa) and think about doing things and then as soon as I get up and move around, my body is screaming at my to lie back down again. Although sometimes I think it should, it's not really making me feel miserable because (although I'm definitely not enjoying the pain) I am seeing improvement pretty quickly and I really feel like this is something I just have to let my body work through. I am hurrying it along as much as I can - I am drinking lots of water and taking some detox supplements, lots of antioxidants, vegetables, very little sugar and I can't really do much more than that to support my body's healing process.
Unfortunately patience is key, and I think I've actually developed some of that in recent years!!
In among that I have done a few fun things this week too. Today we went to the mall for one of Macy's amazing "one day sales" (that actually last 2 days). A little bit of retail therapy is always helpful!
Yesterday I went for my "body work" treatment. I see a kind of massage therapist who does a bit of a combination of cranio-sacral therapy, myofascial massage and lymphatic drainage/ flushing massage and it seems to help. I have an old gymnastics neck injury (from when someone landed on my head while I was sitting in the splits) that bothers me and apparently Lyme aggravates scar tissue, so old injuries can become painful again. A doctor suggested that my headaches were being made worse by this old injury and I went to see this therapist for the first time about a year ago. I really didn't expect it to have an immediate effect, but after my first treatment my headaches improved almost instantly. It was amazing. So I have continued to see him every month or two and it has definitely been helping me. It's not really enjoyable massage though, sometimes it can be, but yesterday he did a "flush" which is supposed to help clear out toxins and I spent most of the time trying not to think about how sick I was feeling. I know that's a sign that the toxins are all being stirred up though and after a few hours I always feel much better, so it's just a short period of suffering for some more improvement!
Earlier in the week I repotted my little seedlings. I grew vegetables last year and discovered I really love gardening, so I decided to start a bit earlier this year in the hope I might get some ripe veggies before I head home in the summer. Unfortunately the weather is not cooperating! Last March the weather was beautiful - we actually sat out on the deck the last week in March. Tonight there is snow forecast. I am SO ready for spring!
So this has meant that my poor little seedlings have totally outgrown their seed trays and have had to be re-potted indoors - obviously some stuff has to stay indoors until it gets much warmer, but I have some peas and lettuce and winter squash that has had to be saved from the freezing temperatures - as a result our sunroom looks a bit like a greenhouse!
I am not really very good at picking the strongest seedlings and killing the others. It feels so cruel. So I have just re-potted everything (again!) and plan to give some plants away (again!). I did start some seeds in a cardboard seed starter and they have really not done well so - sadly - they were not re-potted. However, pulling them out and throwing them away seemed very cruel so I have just put them outside and hope that nature (i.e. the snow) will take care of them. I did tell them if any of them survive then I will consider them strong enough and pot them up....
Here is me and my little seedlings, taken over the sunroom/ greenhouse:
I also have some flower seedlings that really should go straight into the ground soon. My poor sunflower seedlings are way too big for their little cells and I have now got pots to put them in so I think that will be tomorrow's task!
And hopefully we will soon get some nice spring sunshine to enjoy!
In attempt to do that I've been "pulsing" with the Samento on and off over the past month. I take a high dose of Samento for a week and then have a week off and it is producing the strangest reactions I have experienced. I definitely think it's working because I'm basically going through what feels like a week of hell and then I feel like I have taken another step forward - and each time I feel better than I felt before. But the herx-ing is really horrid. Last week it was my joints. It started off just as a kind of ache in my left hip and then one day when I put weight on my left leg it felt as if my hip was going to pop out of its socket - I was hobbling around clinging on to things again which was a very unpleasant flashback to a few years ago. Then the pain spread deeper into my hip and every so often I would get this burning feeling right into my bone that would make me break out in a cold sweat and feel really nauseous and then it would ease off. Then it travelled down my leg into my knee and ankle... then my right leg joined in. It was pretty awful. I had a hot clay bath which is supposed to draw out toxins (as clay is an adsorbent) and this seemed to draw the pain into my muscles - when I got out the bath they were so tight I couldn't straighten my legs. Then over the next few hours it all eased off.
As usual, I've been reading lots of Lyme articles and I came across one that suggested that as the Lyme moves from acute to disseminated, one of the first places it migrates to is the joints. This would fit with my doctor saying I am reaching the deepest layers of infection if I am getting symptoms at what might have been among the first areas to become infected... so it seems that perhaps I am killing off the bacteria and it is all moving out of my joints! Pretty horrible, but I'd rather it was dying off and getting cleared out than staying there.
So while all this is going on I have just been feeling wiped out again. I really feel that when my body is dealing with all of this all it wants to do is rest. I lie in bed (or on the sofa) and think about doing things and then as soon as I get up and move around, my body is screaming at my to lie back down again. Although sometimes I think it should, it's not really making me feel miserable because (although I'm definitely not enjoying the pain) I am seeing improvement pretty quickly and I really feel like this is something I just have to let my body work through. I am hurrying it along as much as I can - I am drinking lots of water and taking some detox supplements, lots of antioxidants, vegetables, very little sugar and I can't really do much more than that to support my body's healing process.
Unfortunately patience is key, and I think I've actually developed some of that in recent years!!
In among that I have done a few fun things this week too. Today we went to the mall for one of Macy's amazing "one day sales" (that actually last 2 days). A little bit of retail therapy is always helpful!
Yesterday I went for my "body work" treatment. I see a kind of massage therapist who does a bit of a combination of cranio-sacral therapy, myofascial massage and lymphatic drainage/ flushing massage and it seems to help. I have an old gymnastics neck injury (from when someone landed on my head while I was sitting in the splits) that bothers me and apparently Lyme aggravates scar tissue, so old injuries can become painful again. A doctor suggested that my headaches were being made worse by this old injury and I went to see this therapist for the first time about a year ago. I really didn't expect it to have an immediate effect, but after my first treatment my headaches improved almost instantly. It was amazing. So I have continued to see him every month or two and it has definitely been helping me. It's not really enjoyable massage though, sometimes it can be, but yesterday he did a "flush" which is supposed to help clear out toxins and I spent most of the time trying not to think about how sick I was feeling. I know that's a sign that the toxins are all being stirred up though and after a few hours I always feel much better, so it's just a short period of suffering for some more improvement!
Earlier in the week I repotted my little seedlings. I grew vegetables last year and discovered I really love gardening, so I decided to start a bit earlier this year in the hope I might get some ripe veggies before I head home in the summer. Unfortunately the weather is not cooperating! Last March the weather was beautiful - we actually sat out on the deck the last week in March. Tonight there is snow forecast. I am SO ready for spring!
So this has meant that my poor little seedlings have totally outgrown their seed trays and have had to be re-potted indoors - obviously some stuff has to stay indoors until it gets much warmer, but I have some peas and lettuce and winter squash that has had to be saved from the freezing temperatures - as a result our sunroom looks a bit like a greenhouse!
I am not really very good at picking the strongest seedlings and killing the others. It feels so cruel. So I have just re-potted everything (again!) and plan to give some plants away (again!). I did start some seeds in a cardboard seed starter and they have really not done well so - sadly - they were not re-potted. However, pulling them out and throwing them away seemed very cruel so I have just put them outside and hope that nature (i.e. the snow) will take care of them. I did tell them if any of them survive then I will consider them strong enough and pot them up....
Here is me and my little seedlings, taken over the sunroom/ greenhouse:
My tomato seedlings:
My seedlings taking over the windowsills:
Monday, March 21, 2011
Entering the blogosphere
I have been talking about starting a blog for AGES so I have finally got around to setting it up. Over the last few years, some of my friends have told me I should write about my experience of Lyme disease and share it. I know that I have read lots of Lyme blogs and other health blogs and found them very helpful and reassuring and now I hope that I can join those bloggers in spreading information about Lyme disease.
Currently, I am still fighting Lyme, still taking antibiotics and lots of supplements but I am winning my fight. I am going back home to Edinburgh and back to university in September to (finally) begin my PhD and (hopefully) get my life back. I am now at a stage where I can reflect on the last few years and I feel really strongly about spreading information about Lyme because I believe that if I had known what it was six years ago I would never have got as ill as I did. There are lots of people suffering from Lyme, but it seems to be an invisible illness in many ways. It is difficult to understand and to explain and for many sufferers, or "lymies", this makes coping with the illness as difficult as treating it. Hopefully if all we lymies share info about Lyme more people will become aware of the seriousness of this illness and increased awareness will lead to better understanding, diagnoses and treatments.
There's no way I can really describe the last 6 years in one blog post, so I'll try to summarise it. Like many Lyme sufferers I was initially "diagnosed" with chronic fatigue syndrome (CFS) - a pretty useless diagnosis as it isn't really an illness but a group of symptoms and there is no treatment for it. The general medical advice is "keep it and maybe it'll go away on its own". I got ill in January 2005, when I was 22, while studying for my MSc. With lots of support from my university tutors and my family, coupled with sheer determination, I managed to complete the MSc but suspended my PhD which I had intended to start that September. Over the next couple of years my symptoms gradually got worse - unrelenting fatigue and extremely low energy levels, horrendous headaches and migraines, general aches and pains, sensitivity to noise, low concentration and low mental energy, weak muscles, nausea... the list goes on. At my worst I could barely walk and had to use a wheelchair if we went anywhere. I had days where I hardly had the strength to get out of bed. I could not drive, go out on my own, or even wash my own hair (I lay on the kitchen worktop and my Mum washed it over the sink, very convenient idea!).
In 2007 I came across the idea that CFS can be caused by certain types of bacteria that can avoid detection by the immune system. After much research in that area I started taking some supplements one of which (allicin, derived from garlic) was known to be antibacterial. In 2007 I improved but I was still very ill. Lots more research and reading eventually lead me to Lyme disease and I was diagnosed in 2008. My diagnosis was done by a doctor who took blood cultures and examined them using dark field microscopy. Not long after this - and very luckily for me - my Dad got a new job in Pennsylvania, USA where Lyme is very common and everyone knows about it. I began seeing a fantastic doctor who specialises in tick-borne diseases in 2009. And so began my journey "out of the Lyme light".
Info on Lyme here:Lyme Disease Foundation
Currently, I am still fighting Lyme, still taking antibiotics and lots of supplements but I am winning my fight. I am going back home to Edinburgh and back to university in September to (finally) begin my PhD and (hopefully) get my life back. I am now at a stage where I can reflect on the last few years and I feel really strongly about spreading information about Lyme because I believe that if I had known what it was six years ago I would never have got as ill as I did. There are lots of people suffering from Lyme, but it seems to be an invisible illness in many ways. It is difficult to understand and to explain and for many sufferers, or "lymies", this makes coping with the illness as difficult as treating it. Hopefully if all we lymies share info about Lyme more people will become aware of the seriousness of this illness and increased awareness will lead to better understanding, diagnoses and treatments.
There's no way I can really describe the last 6 years in one blog post, so I'll try to summarise it. Like many Lyme sufferers I was initially "diagnosed" with chronic fatigue syndrome (CFS) - a pretty useless diagnosis as it isn't really an illness but a group of symptoms and there is no treatment for it. The general medical advice is "keep it and maybe it'll go away on its own". I got ill in January 2005, when I was 22, while studying for my MSc. With lots of support from my university tutors and my family, coupled with sheer determination, I managed to complete the MSc but suspended my PhD which I had intended to start that September. Over the next couple of years my symptoms gradually got worse - unrelenting fatigue and extremely low energy levels, horrendous headaches and migraines, general aches and pains, sensitivity to noise, low concentration and low mental energy, weak muscles, nausea... the list goes on. At my worst I could barely walk and had to use a wheelchair if we went anywhere. I had days where I hardly had the strength to get out of bed. I could not drive, go out on my own, or even wash my own hair (I lay on the kitchen worktop and my Mum washed it over the sink, very convenient idea!).
In 2007 I came across the idea that CFS can be caused by certain types of bacteria that can avoid detection by the immune system. After much research in that area I started taking some supplements one of which (allicin, derived from garlic) was known to be antibacterial. In 2007 I improved but I was still very ill. Lots more research and reading eventually lead me to Lyme disease and I was diagnosed in 2008. My diagnosis was done by a doctor who took blood cultures and examined them using dark field microscopy. Not long after this - and very luckily for me - my Dad got a new job in Pennsylvania, USA where Lyme is very common and everyone knows about it. I began seeing a fantastic doctor who specialises in tick-borne diseases in 2009. And so began my journey "out of the Lyme light".
Info on Lyme here:Lyme Disease Foundation
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