Archive for February, 2010

Feeling Crappy In A Good Way?

 I read an interesting personal experience about LDN with ME/CFS on a forum:

As this drug modulates the immune system, after a few days at a higher dose the immune system usually finds some neglected jobs to do (like working on low-grade infections) and I feel a bit sick till it clears up the mess. So I am now waiting for the “what next?”

But, I like this drug and so far so good.

Sushi

http://forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone&highlight=Naltrexone

This US focused discussion thread has a lot of activity many reporting good outcomes with LDN, some finding it not suitable for them.

Sushi goes on to say:

Each time I’ve raised the dose–and I am creeping up much more slowly than most–I have noticed these effects for a few days, then my immune system (which has been severely hypoactive) attacks something–usually for me low grade sinus and ear infections that have been there for years–and I feel like crap until that stage of the clean-up job is done.

My hope (and some others have reported) that eventually when I get up to the targeted dose, the immune system will clean up all the back-log and the “feel-normal” effects will become more stable.

Sushi

She’s now at 4.5mg having increased the dose very very slowly over a long period and no longer feeling ill effects.

I had wondered if it was possible that my recent lingering headache, tummy trouble & feeling like I have a virus (without cold symptoms) could be due to LDN boosting my immune response and maybe finding nasty things in my body to fight.  This personal experience of the user on this forum would seem to suggest it’s possible.  Another user reports feeling very similar to me – improved sleep, less pain and more energy but sort of feeling fluey and run down then not knowing if she overdid it with the new energy or if it’s something to do with the way LDN works.  Yet another user is reporting a mild headache and tummy ache.

I also recall that when I was on 2ml dose previously I felt great for a week to 10 days then felt sort of run down and listless for a couple of weeks (when I then upped the dose and triggered bad side effects).  So I might of sort of been here before.  What’s going to be interesting is what happens in the next couple of weeks – if the yuck feelings go, stay the same or worsen.

I’ve held off voicing the idea that maybe LDN is sorting out my immune system and then fighting off bits of infection as it goes – because it falls into that idea with many therapies for ME/CFS that you have to feel worse before you feel better.  Then you get the counter argument that how do you know the feeling worse isn’t actually a poisioning of the system rather than dejunking it?

There’s a lot of knowledgeable people over on that forum thread.  They are talking about scientific stuff I can’t compute like a connection for one user with rapid weight loss using LDN:

One of the things LDN does is lower TH17. Now TH17 is important for gut immunity.

It’s my hypothesis that in those of us with major yeast/dysbiosis issues the LDN causes malabsorption. My advice would be to stop the LDN for a few weeks (you have nothing to lose) until your weight has come back up to normal.

I’m telling you this because a) I might have a major yeast infection (but not the weight loss) and b) this isn’t like when I tried the garlic tablets to cure ME/CFS there’s some serious scientific stuff and research going on that I don’t fully understand but which I sort of trust.

Ironically Low Dose Naltrexone’s shorter term blockade of the endorphin receptors results in increased endorphin levels in the brain. This occurs because LDN’s blockage of these receptors tricks the brain into thinking endorphin levels are low causing it to compensate by increasing endorphin levels.  Endorphins, which are known as ‘natural pain relievers’, are produced by the HPA axis during exercise, excitement, pain, sexual activity, meditation, acupuncture, massage therapy and by eating spicy foods and chocolate. (The “phin” in endorphin is a take off of morphine). The ‘runners high’ is believed produced by high endorphin levels in the brain after extended exercise.

Endorphins effect the immune system by enhancing natural killer cell response and reducing B-cell (antibody) activity and LDN’s effectiveness is being tested in several autoimmune diseases.

LDN appears to effect the functioning of the regulatory immune cells in the central nervous system called microglial cells. Upon activation by infection or cell damage micoglial cells produce pro-inflammatory cytokines, reactive oxygen species (free radicals) and nitric oxide. Microglial cells may be a key component of the ‘sickness response’ that produces fatigue, fluey feelings, pain, etc. when we come down with an infection. Some researchers believe that microglial cells are chronically turned on in ME/CFS and fibromyalgia. LDN appears to block a receptor on the microglial cells thus inhibiting their activation.

http://www.aboutmecfs.org/Trt/LDN.aspx

Ummm ok then 🙂 Sounds good to me though!

I don’t have answers  I’m just sharing what I’m uncovering and piecing together as I go on this journey.  And this is just another possible reason I’m feeling crappy at the moment.  I may know more with time.

Wearisome

Five days on and I’m still weary with a background headache verging on migraine threat, a very stiff, painful neck and an uncooperative stomach.  I thought I had to choose between feeling hungry or feeling sick (having eaten) but it seems I can now do both at the same time. Oh joy.

Fingers crossed it’s a virus, or unusually lingering payback and not a step backwards or caused by LDN.  Trying to remain optimistic & wait for this to pass.

Of course it doesn’t help that I have a couple of clients waiting for work and that now is the time I could do with making a bit of money to keep me ticking over.  Last night I had a (typically weird) dream but was carrying a large painting around with me everywhere I went.  I needed to finish it but stuff kept getting in the way. Pretty clear what that dream was about.

Yesterday I idly looked at the blog posts from the first month of posting here, which was back in May 2007.  Although ill to a larger or lesser degree for 18 months, I had been diagnosed for 6 months then and off work on sick leave for as long.  I was coming to terms with crushing debilitating chronic illness.  I do see some improvement in how I am day to day from then to now. Improvement is good and I am better able to cope with living life chronically.  But I want more. Of course I want more.

Deep down I now know I’ve always had the feeling that this, all of this, is temporary.  That one day I will feel better.  Maybe not forever but that some level of remission will come.  Even to get to the level of ill I was in 2006 (ill but not this ill) I’d consider remission.  I’d consider relief.  Here I am nearly 3 years after starting this blog with only a tiny improvement and a lot more knowledge.  I’m living with the idea that this might be as good as it gets.

Back in May 2007 I was talking about the massive adjustment not only I, but my family and friends were having to make too.  The losses and grieving of what may never be.  I’m realising for the last 3 years those things have indeed never been and that adjustment has become somewhat more permanent.

I still have that belief that I’ll get better, I’ll recover some day to day function again.  But there’s a fear in my stomach because I don’t know what the catalyst to that recovery is – other than doing the best I can and waiting to see.  Waiting, waiting, waiting for how many more years?

When I got diagnosed I said to Growler “I’m going to beat this”.  Back then I didn’t fully understand the nature of the beast I was setting out to beat and in many ways learning to accept my illness and limitations whilst maintaining hope of recovery seems in many ways to be the definition of beating ME/CFS.  Will I always be this shattered and messed up?  No-one can tell me for sure.

So I’m getting a mental picture of the porta-cabins at my old school.  Portable classrooms to fill a temporary gap that have stood so long moss grows up the sides, the paint starts to peel and no-one can remember what the fields looked like before the porta-cabins arrived.  Everyone accepts them as part of the school but they could still get loaded onto the back of a lorry tomorrow if made to. 

ME/CFS is growing moss up the sides.  This level of ill is temporary somehow but it’s been with me so long it’s my familiar day to day and it’s hard to know what life was like without it.  I can’t just shift it because I feel like it – I need a crane and a lorry, or a team of people with hammers, or someone to burn it to the ground – but no-one can tell me or sure the best way to get rid of it or if it will stay gone.  Well that prota-cabin analogy works to a certain degree anyway 😉

I realise of course that this has all come into focus again because I’m on a new medication which I hoped (hope) might be the catalyst to improvement and perhaps recovery.  And here I am in a big old crash which I just want to say a lot of swear words about.  No quick fix for me.  I also know that this will pass and I just have to be patient (insert more swear words). 

Some days I just want to be free from it.

There’s nothing like a crash to make you look for answers and find more questions.

DLA Delay

Right I gathered my courage and rang the DLA helpline. Now they recieved my application on 6 Nov 2009.  They wrote to acknowledge it on 17 Nov.  Then they wrote on 29 Dec to apologise for not having given me a decision and I haven’t heard from them since.

So I was on hold for a good 15-20 minutes waiting to speak to someone due to high volume of calls. This in itself might be a clue.

When a lady finally answered she was kind of quiet on my phone and mumbled something which, flustered, I assumed was asking for my reference number as that’s what it says you’ll need to state on the letter.  But no, she said in a rather patronising and fed up sort of tone “The … LAST name … of the customer … you … are …calling about”.

Well once she’s asked me lots of security type questions and had my records up she thawed a little.

She can’t tell me why I haven’t heard anything since the end of December or why there’s been a delay because “that’s with the Decision Makers”.  But she could tell me that in the last few days they’ve requested a GP’s report.  This has me a bit gobsmacked because last time I applied they requested that within a week.  This time it’s taken 3 months. Yikes.

So in a way it’s bad news because it’s going to take a while longer yet to get a decision.  But in another way it’s good news because it’s not like they had already turned me down and my letter got lost in the post (paranoid!).

Hope my doc still has her copy of my application after 3 months. But she’ll most likely ring me if not because she’s nice like that.

Sounds to me like DWP have a massive backlog. Or my application got buried on someone’s desk.  I don’t know what that means in terms of how long I’ll have to wait now but at I know it’s still grinding it’s way through the system (like a glacier).  Well at least I’m used to waiting and moving slowly eh?

Needing Adjustment

So I am weary today.  I felt a bit weary yesterday but had a commitment to write a letter and make a pop up so I would be clear today to do sorting with my sis-in-law-to-be (K) today.  By the end of yesterday afternoon I was wishing I’d spent the day sleeping, or at least parked on the sofa watching telly.

Well today I feel (unsurprisingly after pushing a bit yesterday) even more weary.  So I’m just texting K to cancel now.  I’m not a zombie but I’m not up to wrestling with the contents of kitchen cupboards or the grotty assortment of stuff in the garage. 

In terms of pulling out clutter for car booting we are nearly finished – just kitchen and garage to pull stuff out from.  There’s more stuff for recycling and tidying after that but we should be able to organise a car boot session soon – if I still have willing volunteers!  But all that has to wait for another day.  As Growler said, resting is The Most Important Thing to do after my weekend.

I felt myself thinking I was premature in my excitement over LDN and what improvement it might be offering.  That writing a post admitting I was wiped would be showing just a classic boom and bust. 

I hope it doesn’t read like that and as someone who hasn’t experience a boom for a long time I’m fairly confident still that LDN is making some kind of positive difference.  What I need in the coming weeks is to make an adjustment to utilise the positive improvement without overdoing it.  Plus my long weekend away was a calculated bust.  If LDN meant I didn’t crash that was a bonus, but I was expecting this week to be a bit of a write off from all the extra exertion at the weekend.

The beginning of the week felt like normal levels of ill.  I maybe should have rested more yesterday and the day before than I did.  But I can learn that lesson for next time.

I forgot to tell you that my GP said if I did ever feel I wanted to try the GET to just let her know but it was totally up to me.  Having had a taste of my local physio’s GET (when I didn’t know that’s what she was asking me to do and when I didn’t know I had ME/CFS but every health professional seemed to kn0w) I think I’m better placed to understand how to increase my own activity in a controlled and paced fashion. 

I already aims, ideas and tools to use – I just haven’t had the physical health to do anything with them.  I’d like to start doing the basic pilates exercises which the physio said were OK with my back condition.  I’d like to start gently increasing what I do each day and get back to taking really short walks.  It’s not the willingness that’s missing – it’s the ability.  And I have to walk before I can run. I have to be a bit better before I can walk.

In other news – I really, really, really want to hear about my DLA. 

They wrote to me at the beginning of January apologising for not having made a decision and I am still waiting to hear.  Trying to stay positive but the suspense is killing me not to mention the lack of any money since October has been stretching my tiny income from my art sales.  Plus it’s hard not to imagine that the delay is because it’s not straightforward and I’m going to need to have a medical or am going to be declined.  Must, think, positive!  Now is not the day to worry about it. (But I still want to know!).

Doctors Says “Ooh that *is* exciting”

I went to see my Lovely GP on Monday to ask about thr/ush which just keeps on coming back.  As I’m on my period she gave me a swab and labs envelope so I can take a sample myself to drop in at reception. 

Then I’ll probably get daily anti-f/ungals for a month, or possibly longer if needed.  This doesn’t bother me too much.  In fact if the c/andida folks are to be believed or the various protocol’s around are right then anti-f/ungals are a good thing to be taking.

I’m reluctant to say thr/ush or anti-f/ungals or c/andida because I don’t want to get swamped by people telling me ALL my health problems stem from c/andida.  I accept it could be a factor, or caused by the ME/CFS but I’m not willing to accept it is The Answer to Everything.

I also asked my GP about getting Celevac on prescription as I am now using it daily to help with my IBS.  I like how it can be used for constipation or the other which is good for me as my IBS flips between the two.  She had to look it up as they usually prescribe other things but I did come away with a prescription.  Hurrah!  That’s going to save me a bit of money every month.

I also asked about getting Resolve on prescription which proved to be the long shot I thought as they can’t do it.  Resolve seems to be the most effective thing I’ve found so far for that bloaty, trapped wind thing which can result in tremendous pain.  It also helps with nausea.  But we’ll need to keep buying that over the counter.

We spent quite a while talking about the LDN.  I think she thought I had just come to update her.  As I tried to explain it was difficult to quantify the effect it was having she could see just be my animated attempts to put it into words that there was a difference.  We told her about the busy weekend I’d just had and how I was feeling knackered but not like a zombie – which pre-LDN I probably would have.  She had this wonderful expression of happiness, curiosity and amazement on her face.

I took a print out from the LDN Research Trust with me as well as an article about LDN which appeared in the British Medical Journal last week in the hopes of encouraging the surgery to offer LDN to any MS patients who wanted it.  She told me they had a lot of MS patients and quite a few had asked about it. She said she was going to feed back my experience to the practice and I pointed out that in MS the results can often be much more dramatic sometimes not just halting disease progression bu reversing it.  I feel like I did something worthwhile this week 🙂

It was quite strange to feel in control and be the one leading the conversation without any prompting.  I did call on Growler to input on describing what this change in me is but overall I felt like I was in the room, engaged and as my GP said with a spark about me.  Now that is exciting (even if I do feel like I could spend the day sleeping today, 2 days later!).

Out in The Big Big Outside World

So we had our long weekend in the Lake District and it was brilliant.  Tiring but really enjoyable. We arrived Friday, had a meal with my dad and his partner and then drinks with my eldest brother, his girlfriend and my mom when they arrived a little later.

We were all staying in a pub at Pooley Bridge near Ullswater. This is Ullswater taken a mile or so down the road:

20100213 ullswater

Saturday was a big day. Up and dresses for breakfast around 8.30am, then a long scenic drive to Blea Tarn where we (all of us) went for a wheelie walk.  My eldest brother R had volunteered to push me and had checked out accessible routes in the Lake District and between us we selected a smooth access walk at Blea Tarn.  Except flooding in November had damaged the path and it was pretty hard work – for R!  He certainly got a work out and I spent quite a lot of time tipped back on two wheels to traverse the rocky bits.

I did take some pictures on the walk but they’re on film so I’ll show those once they’re developed.  I also got snapped by my brother and my dad’s partner – I dread to think what I look like!  It was around 3 degrees celsius so I was wearing a vest, thermal vest, top, cardigan, fleece top, fleece jacket, hoodie and waterproof coat!  Plus 2 scarves, a hat, gloves and thermal trousers.  At least I was warm – just about!

It was so quiet and really beautiful.  Strange to be out with Growler, my mum, my dad, his partner, R and his girlfriend but good.  Strange too for Growler to see someone else pushing me in my chair!  Although he did help out on the way back as R tackled part of the “for some” path which was really hard work!

After the walk Growler, me and dad drove back through the beautiful road called “The Struggle” and I took some pics on my mobile as we drove along so I could share it with you all.

It was a glorious sunny day with some snow still lingering on the higher mountains and parts that were shaded.

20100213 the struggle 007

20100213 the struggle 006

20100213 the struggle 005

20100213 the struggle 004

Back at the inn Growler, dad and me sat in the bar to watch Wales playing Scotland in the rugby Six Nations.  It was a stressful match which got very exciting towards the end. 

After we went up to our room and I was feeling pretty tired by now. The late night and early rising hadn’t set me up well for the day and I forgot to take my d-ribose in the morning! Oh well. 

I had a lie down for a couple of hours and really didn’t feel much like going to the party.  Did I want to get changed & drag myself out to a Ceilidh to watch everyone else dance?  However, this was my cousin’s 50th birthday celebration (shared with her husband also 50 this year) and I hardly ever get to see them.  We’d come all that way and the party was just 2 miles down the road.  How could I not go when I was so close?

So I dragged myself up to get changed and realised although I was knackered I didn’t feel utterly wiped.  We decided to go for an hour or so then come back (to bed!) but we actually stayed a bit longer than that.  It was actually great fun watching my brother and my mom trying to get to grips with the dances – more fun when they got it wrong actually 🙂  We laughed a lot!  Then when the buffet started (as I was feeling a bit bleurgh anyway) we said our goodbyes and slipped away.  My cousin and her husband had arranged an open house on Sunday morning so I knew I could get to see them then too.

I had a great sleep and was up, dressed and down to breakfast at 8am on Sunday (Valentines Day!).  Although breakfast turned out to be a drawn out affair as they were having kitchen problems.  We packed up and headed to my cousin’s house a couple of miles away for their open house.  I got introduced to members of her husband’s family and spent quite a while chatting with my other cousin (brother of the host) and his wife. It was so nice to catch up and all very relaxed.

I did feel pretty zonked when we left but settled in for the long drive home.  We stopped at Morecombe and had a little lunch from leftovers from my cousin’s party whilst looking out over the sea.  We got home at tea time and were both really ready for an early night.

I was up on Monday to get dressed for the doctors by 10am but really surprised myself.  Although I was really knackered my brain was still working well and it felts a different sort of tired to pre-LDN.

I did need to take more migraine meds than usual over the weekend to get through it and I enjoyed “normal” food but had some IBS problems to deal with as a result.  I was shattered but just not quite like I expected, or how I would expect to be pre-LDN.  We did plan carefully, kept things as manageable as possible and allowed extra time for rests but I managed better than I hoped.  So all in all a really excellent weekend.

LDN – It Helps To Read The Instructions

When I ordered my repeat (3 monthly) prescription for LDN I saw a notice on the order form telling you exactly how to find the right dosage. 

I don’t remember seeing it before and was following the guidance on the external info sheet they linked to.  Maybe this is proof that the LDN is helping as I actually noticed the instructions this time!

The introductory dose is 1.5 mg of liquid LDN for the first 2 weeks of treatment, increasing by 0.5 mg every 2 weeks until the individual find the
dose that suits them best.  If there is an increase in symptoms when taking a higher dose, it might indicate that this dose is too high.  Lower the
dose, and improvements should become apparent. The maximum dose is 4.5 mg which most people find effective and stay on that daily for maintenance.

Now that’s pretty straight forward! Oh dear me. I blame the brain fog.

So I could try going up 0.5ml to 2.5ml in a couple of weeks if I want to. We’ll see.

By the way the 2ml has been agreeing with me and although I’m finding it very difficult to quanitify any effects of LDN I do have the feeling that it’s helping.


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