Friday, March 31, 2017

Cohen's Christmas Present

My health update: I feel like something is still active with the mini-fevers and sweatiness and aching glands both neck and under my arm and increased levels of aching, and leg squeezing pain that had me seeking an increase in the oxycodone combo I take. A recent blood test revealed mild neutrophilia with an elevated WCC but it is what I feel like that counts to me and ever since before Christmas I have been struggling to find comfort.  I have taken a couple of weeks of daily 5mg prednisone which has indeed helped in terms of energy, some pain and clear-headedness but I am not allowed to stay on it so I will drop back to every second day now.  My mood is never great on prednisone at the start anyway so I won't miss the depression that came on with the steroids.

March has been much kinder to my stomach but I eat what I feel like now which means I am a lot less strict about doing what's best for my blood sugar and the daily beef mince burger phase is over and I don't need or want cream in my coffee like I did. I eat small but that's not new and I avoid bready things but mainly because I would prefer something less nutrient dead which doesn't tend to trigger indigestion or reflux.  I've been using up the sorghum flour (mixed with tapioca flour) and I made a fruit loaf and corn fritters so that must mean I am feeling better.  Me? Baking?

I can't begin to describe how horrible it has all been up till now despite not having any mobility problems.  It is difficult to feel human when I am like that and I have hated waking up to too much pain.  I am taking the Targin more frequently - 4 times a day (less if I sleep through) which has helped a lot by avoiding the spikes and putting me on a more even keel but Dr G insists that it lasts 12 hours.  He is so wrong.  At least Dr. J believed me.  My total daily intake of Targin is now 30mg.

Dr G also wanted to check on blood markers for vasculitis so I had a heap of blood tests and apart from what I have already mentioned I still have an equivocal MPO-ANCA (anti-neutrophil somethings antibodies)  as I did 12 months ago but the other ANCA measured was not positive like it was last year so it will be left to ride along with the neutrophilia and a slightly elevated CRP at least until the rheumatologist comments in September.  He's happy I have an appointment and approves of Coastal Joint Care.  He will not let me go over 40mg of Targin a day at any time during the next 12 months and I know already that my pain will not be eliminated by that.  I think the steroids have helped more so than the dose increase I'm already on.  But now I have to go without them too.  I so don't want to go back to feeling like a ball of pain instead of a human being.  In fact it was impossible to "be" in that state.

I'm still running out of breath quickly on exertion but while I still have steroids in me I can walk fast before it catches up.  It has been nice not to be so slooooooooooooow.  I still get heart palpitations and I've been taking Deralin all year.

The stupid eye headache that seems to respond to rhinocort is still there but it is not unbearable like it was and I have the curtains half open on a couple of places but I have had so much face pain, my jaw has been playing up, I have felt it click out of place, just like my neck goes out when I use my arms the wrong way.  All of that is closely linked with a right sided ear-ache and sometimes phantom toothache.  Yep, face pain has been bad and the deep eye pain.

Taking a lung spray containing steroids has really helped with my throat control so that I can sing a bit but that's not what it is for.  The Symbicort seemed to help with the rattles and squeaks and I am not sure yet whether the Pulmicort I switched to will be as effective. Sis says I should wait a month for the Pulmicort to work.

The Summer humidity has made comfort hard to find and it has continued into March.  I am so sensitive to temperature changes as well so it is always a battle finding the right setting on the air conditioner but it is usually set on dry/dehumidify rather than cool.  I can't reduce the temperature below 26 degrees without noticing extra pain and now that March is reducing the night time temperatures I am already into wheat bags on the cold pain spots while the humidity is causing me to sweat from my face, the back of my head, my back, behind my knees.  I keep my arms bare but my painful legs and hip/lumbar region respond some to as much warmth and tightness of clothing that I can put up with, which is not much since my skin hurts.  It is getting harder and harder to find comfort and without being comfortable it is hard to remain happy.  But right now after a couple of three weeks of low-dose steroid I am at my best which is not very encouraging because this just isn't good enough. I'm too tired.

Saturday, February 25, 2017

I just can't get out of here but at least we know why

I think I am feeling OK and go to get ready to go out and then find out I am too breathless to go as soon as I start moving around or else I try a quick lie down to regain some energy and fall asleep before I know it or I can't bear to drive any further so just end up at Golden Beach and pay full price at the local SPAR supermarket there.  It is certainly not the way to save money and gone are the days of being able to shop around according to what was on special where.  The same thing is happening for a tobacco run, ie. not making it to Rainbow Fuel where the cheapest tobacco is.  It is $4 a packet (the new tiny 25g pouches which aren't really that new) more at Coles.

Pain isn't helping.  I can't get on top of that either with the tiny amount of oxycodone I am on (in combo with naloxone) so my mood is pretty dead pan and no doubt I would be cranky if there was someone here trying to push me into "trying harder", "going for a walk just to the end of the street, or simply not understanding. But I will say it again......I feel like I have got the flu and it is so hard to push through that when you know you might end up worse off because you didn't rest.  I'm wondering if I get enough rest even though I don't do anything much except potter around because I still resist going to bed and just doing nothing.  I am always working on something even when my brain isn't working efficiently enough to do it properly, I have to keep engaged or else the pain will overwhelm me and it is only when it does that I lie down.  The horrible part is that when I wake up again I am usually in too much pain because the pain killers have worn off while I've been asleep although there are still times that sleeping will help reduce pain levels in the long run even if I wake up sore and wrecked for the first 2 hours.   It's also because my body creaks and groans into the new position of lying down and I can feel things either click into a different place as gravity seems to contract me into myself and things hurt.  I've always had pain from moving - that is easier to accept but I am also still feeling like I am putting things out in my back and neck and hearing things click in and out or just click whatever way and I know I have grainy knees and similar crackles in my neck just when I turn my head even when I am not attempting to lift my arms.  Just taking a top off the right way by crossing my arms before lifting the garment over my head, is enough to ruin the whole day.  If I get a migraine then it can often mean the end of my plans for the day and it seems like I have been planning to get out of this house since last year but can't get further than Golden Beach.  I have not even had a swim this entire Summer which is soon over.

I am glad I managed to talk Ange into getting out for her swim before Summer was over but she is confined for different reasons.  The thing is that she did it thinking that I was going to do the same thing down here but I didn't.  "Good idea woman" she typed.  I tried but by the time I was feeling half alright for it, it was cool and after dark and all I managed was another "look" at the water with a paddle for me and Milo thrown in after midnight so it wasn't even the same day that Ange went.

The Gold Coast team are moving along in leaps and bounds with regards to research into Chronic fatigue syndrome as defined by Canadian Consensus Criteria which means that at least post-exertion relapse is required for being defined as having CFS aka ME more correctly when using those criteria. Anyway they are discovering lots of things about people with ME/CFS (which is now more commonly known as CFS/ME - huge contribution to our understanding thank you researchers) thanks to grants from the Queensland Government and Fox I think the other main one is.

Here is an excerpt explaining a bit of it but I am not at all familiar with calcium ion transport in the body so it does not mean enough to me other than my genes should be able to confirm it if I knew which ones to look up on my genetic testing but I don't.  I think they are still picking out the best genes to look at.  Here is the excerpt anyway:

The breakthrough came after researchers from Griffith University identified that patients with CFS/ME were far more likely to have single nucleotide polymorphisms - DNA typos - in the genetic code for certain cell receptor.
This cell receptor is known as transient receptor potential melastatin 3 (TRPM3), and in healthy cells it plays a crucial role - transferring calcium from outside the cell to the inside, where it helps regulate gene expression and protein production.
But in several peer-reviewed papers published by the Griffith team last year, they showed that in CFS/ME patients, something seemed to be going wrong with TRPM3.
In the latest study, the team looked at blood samples 15 CFS/ME patients and 25 healthy controls, and found that immune cells in chronic fatigue patients had far fewer functioning TRPM3 receptors than those of healthy participants.
As a result, calcium ions weren't making it inside the cell like they should be, meaning cell function was impaired.
What makes matters worse is that TRPM3 isn't just found in immune cells. The team tested its presence on immune cells as they're easy to access in blood samples, but the receptor is found on every single cell in the body, which not only explains why CFS/ME has been so difficult to diagnose, but also why it's so severe.
"This is why it's such a devastating illness, and why it's been so difficult to understand," one of the researchers, Don Staines, co-director of Griffith University's National Centre for Neuroimmunology and Emerging Diseases, told ScienceAlert.
"This dysfunction affects the brain, the spinal cord, the pancreas, which is why there are so many different manifestations of the illness - sometimes patients will suffer from cardiac symptoms, sometimes it will be symptoms in the gut."
It's something that's confused doctors for decades, and has lead to much of the misdiagnosis of the condition - but the new research suggests that all of the common CFS/ME symptoms can be explained by these faulty calcium ion channels.
"We now know that this is a dysfunction of a very critical receptor and the critical role that this has, which causes severe problems to cells in the body," said Staines.
To be clear, the research is still in its early phases - all we know for now is that these dysfunctional TRMP3 receptors are involved in the disease, and there's a lot more work to be done.
But Staines suggests that the involvement of TRPM3 receptors could explain why so many patients appear to experience CFS/ME following a traumatic event or serious infection.
The class of receptors TRPM3 belongs to are also known as 'threat receptors', because they're upregulated when the body is under any kind of threat, such as infection, trauma, or even childbirth. 
Staines and his colleagues predict that it's this upregulation that causes the the faulty genetic receptors to get over-expressed and then take over, messing up the calcium transfer in a range of cells.
For now, that's just a hypothesis. But it's a much-needed starting point for researchers to look into further.

Sunday, February 12, 2017

Christmas is finally over for me

Brett and Kerry finally came to visit me to get the presents that I have been trying to give them and Cohen and the girls Kalisah and Lexi.  I did not go to HB because I got the message that Scott was not welcome but Scott assumed he was invited.  He said Roger told that's where he had heard about and short of telling Scott he wasn't invited and go alone, I decided to cancel the plans especially since Brett and Kerry informed me that they would be down to the Sunny Coast sometime over Brett's 2 week break and that they would bring Cohen.  It didn't happen.  Neither did I see them on Brooke's hen's night which they came to Caloundra for, nor Nick's buck's night which turned out to be a  Coochin Creek camp-out that Nick abandoned and went home leaving his invitees behind.

Anyway it is Mr and Mrs Nick Alderton now because Nick and Brooke were married yesterday and she has just found out that she is pregnant with number 2 for her and Nick.  Riley, a son to Nick from a previous relationship was in the wedding party so he sure has grown up.  See for yourself in the wedding photo. Anyway their relationship will never be perfect because Nick does things that Brooke doesn't even know about.  

I briefly met Brooke's mother last night because out of the blue at about 9:15 I was asked to pick up Brett and Kerry from the reception at the local Golf Club function room, but I did not know it was  her at the time but I should have guessed by the build which Brooke has developed since having her first child, the gorgous Ellie who looked like she was about to tackle the steep stairs which is why I ended up on the inside of the glass sliding doors.  She had on a big grin and was heading straight for me still outside waiting.  Needless to say it was past 9:40pm and Brett and Kerry finally emerged after the bride and groom packing up their cars so at least I got to congratulate them.  Nick and Brooke got married at the Bushland Botanical Gardens but I was not well enough to go and peak from a distance like we had planned - we being Scott and I.  Scott cancelled probably due to lack of petrol but he was not invited to the wedding.  It was Scott and Nick who were the original friends I thought but Scott has not been included since he went straight for lack of a more obvious reason.  Brett on the other hand has had little to do with him since he left the coast but ended up being best man anyway and Brooke latched on to Kerry so much that Kerry ended up being a bridesmaid and helper until the last minute when unbeknown to her she was expected to spend the night with the bride and came here to be with Brett who was staying here over night and that is how come I got to see them after all this time.  I had even left the Christmas presents sitting out for long enough to annoy me before I packed them up into a bag still hanging around the house.  I did not even dismantle the Christmas table fully until my Christmas was finally what I could call "over". That was yesterday.

The main thing that stuck in my throat over the whole Christmas debacle was Cohen not receiving anything personally from any of us.  Eventually Aunty Debbie's money was turned into a gaming voucher and delivered to his new computer in his room at Brett and Kerry's but he does not even live there.  I did not know that Stacey has had him closer to full-time than they have ever since her mother arrived to live in Harvey Bay.  She has a nice pool they can go and visit and I bet Cohen missed the pool greatly when they left the Domain village unit.  Cohen loved it  at the pool and all the freedom he had inside a gated community. So did Brett love taking Cohen to the pool daily until Kerry came to live there with two of her girls. Brett and Kerry became engaged on their 2 year anniversary when Brett popped the question.  It was a surprise for Kerry but it wasn't half obvious that she was thinking along those lines via her facebook posts for months.

Cohen should get his Christmas present from me and card with money in it from Mum (his great Nana) any day now when Kerry takes Cohen to school or from I guess. She has a new Praedo 4x4 to do it in now which was quite a big beast parked in my driveway.  Brett still has no license and can't even get it back until he pays all his SPER fines and it has meant that Brett has not been able to duck away any time by himself to come and visit Mum while he has been down this way but at the same time, when he is tired and he wants to go home, he does not want Kerry to bring him here at the end of a travel weekend either.  They both dislike the Sunshine Coast and would be quite happy for me to move up to where they are.  Brett complains about all his friends and how they have either changed too much or not grown up.  Even Nick.  In fact Nick has done some pretty bad things to Brett during the times that they are both drunk or drugged.  Apparently he caused Brett to have a seizure recently after choking him for a bit too long.  I'm disgusted.  Apparently Brett also has arthritis in his knees just as an aside.

But Brett's behaviour is still very childlike when he has been drinking despite him having a good work ethic the rest of the week. He has a live video of him working on Facebook posted just this week. I was horrified when he discovered that the electronic usb cigarette lighter that I gave him for Christmas was a ferocious weapon which he would not stop playing with....electrocuting himself over and over with almighty jumps.  The current even went through a carrot (the one hanging around for Milo to chomp on) so when we (Kerry and I) were yelling at him to put the thing away and use it for what it is meant to be used for (a lighter that the wind can't blow out) he kept begging us to let him do it on us!!!  They say it is the volts that jolt and the mils that kill so maybe it has some safety profile based on that but who knows these days.  It is a weapon that a woman could have in her purse if she could just press it on to her assailant and push the button, she would cause quite a decent moment of time when she could attempt to escape.  It would have to kept fully charged in your handbag rather than forgotten about.  It just so happens I bought myself a pink one so perhaps I will keep it in my bag.

Anyway as far as my pain levels and things working out with the times that things actually happened, they worked out OK.  By the time they arrived after 1am Saturday morning I did have the housework done enough after having to take naps in between.  I am always more alive at night time anyway so getting a call last night asking for me to pick them up (it was Kerry who actually asked) turned out to be OK too. Anyway, I am glad Christmas is over now.  Now you know why I hate Christmas these days.

Tuesday, January 24, 2017

I tried Cannabis oil today. I was in agony when I woke up today,

I had two visitors today.  The first was J because I asked her to bring me over a lighter because every single one in the house died last night but I woke up with a stuffed back (lower).  Goodness knows what antics I must have done in my sleep to deserve that but it was epic pain trying to move.  I was up quite early and poor Milo once again thought I was playing because here I was shuffling like a stiff old man and she thought it was an invitation to do her foot play.  I wanted to cry instead.  Sitting was even worse and I only had to move less than a cm before I was calling out in pain.  Being frozen into a position that gives no room for movement has happened to me before over the years.  The very first time it happened 2 weeks after a trampoline twisting injury at Burwood Teacher's College.  It also happened when I was pregnant with Breville at Hogg St, Toowoomba.  The house we were going to buy but got knocked back on the loan at the last minute (aka max stress time)  It has happened since then I think but not very often I am glad to say.  It gets stuck like that more often in my neck but I have had so much pain for the last, say, four days? ....(darn I can't remember anything).....and this acute pain back pain on top of it was just too cruel.  Once again I got out the wheelie walker.  Luckily the Targin worked a bit within 2 hours so once again the suffering after opening my eyes to  the world of reality without pain relief is really starting to get me down and I can't wait to get back to the pain specialist in March...because 2 hours is a long time to put up with peak pain.  But that wasn't enough Targin so I was still yelling every time it caught me off guard - even lifting my arms did it.  It feels like something is making contact as in bone on bone and it is an instant acute but short-lived pain if you obey and stay rigid, not moving.  So rigid I was for a lot of the day.  It feels like my lower back got chilled last night which means it probably got all the way down to 23 C (which is not exactly cold  is it!) for a brief time after dawn and I make a habit of covering up my waist, hip, lower back areas with at least a sheet lest the fan going all night leaves me stiff and sore.

The ceiling fan has been going since last year in my bedroom because I perspire too much without it and that is even worse since I have been having these stupid 37.2 degree mini fevers up from my basal of 36.5.  But I can always feel when I have the "fever".  The entire year so far! Easing off a bit in between and when I take a prednisolone.

 I did not feel the heat as much as this last year because I was amazed at how heat tolerant I thought I had become.  Can't say that this year...... and the presence or absence of this mini fever makes all the difference.  All I can say is that I glory in cool of some nights well after the mosquitoes have gone to bed.  Unfortunately this year seems to be bad for midges though and I don't think they ever go to bed.
 From them I run, but I love being outside late at night if they are not around or there is a high enough breeze.  I have not been outside much at all this Summer.  It is way too hot for me or way too fast before the mosquitoes track me (and Milo) down during the day.  I am still getting bitten daily INSIDE the house and about a week ago I also got bitten by a green ant INSIDE the house and inside my kaftan-like dress on my left hip.  I had a very strange reaction to that bite, it went straight into my hip joint somehow and I still get a pulling pain on that side.  I took anti-histamine but this hip pain was related to the bite no doubt in my mind.  Toxic joints?  Anyway I could live with that but today's been outta sight and bloody cruel with this frozen back.
cut-out scenes etched into metal behind which a light shines through

 Anyway J brought me over a lighter before it got too hot for her and we had a cuppa and chat in between my yelps of pain.  By then I had added anti-inflammatories and paracetamol to the Targin and if I can move even a centimetre that movement very slowly helps me limber up so I would bend down very slowly and gingerly to get a stretch every so often.  I was feeling much improved by the time all the pills had kicked in but waling still hurts and I feel 80 when I try.  Anyway, this too shall pass but I wish I had some cream for my coffee. I have been stuck here nearly all year so that when I go to the ATM or to get smokes for 5 minutes I end up taking photos of what it's like out there on my way home again to give me the impression that I am getting out and about...or something, I don't know why I do it but I actually love looking at them all again so that's a good thing I guess.

Last night after being stuck here all day I drove down to Happy Valley on dusk because it was much cooler in the strong breeze.  I walked around the carpark and that was it, taking photos of course!  I did not bring Milo.

Back on Facebook after J left I got chatting to local ME sufferer K who said she would let me try some "pain relief". She came right over and we met for the first time, had coffee in the air conditioning and yakked a lot about our similar symptoms and experiences with hospitals and doctors (usually useless, traumatic or rude experiences).  I had one tiny drop of this thick black oil that she put on a spoon but it wasn't paste-like as in the way "Phoenix Tears" comes out.  It was home-made by someone else she's friends with so you might think I was taking a risk but I wasn't because I know how it's made.  I am not really sure how much it would have been felt had I not already been on more than my usual dose of pain meds but it was pleasant, relaxing and perhaps helped with the pain but like I said I was already on so much more than usual this morning because I could not bear not to be.  I'd like to try it again before I have even had a Targin and I will buy some one day from the Internet probably.  I reckon it will be properly legal soon.  Not that its legality bothers me as much as it used to because I worry less about everything that I used to worry about and I don't really know if it is a sign of dementia or not that I have changed.  Leave a comment if you happen to know that it is one of the symptoms.  To my mind it is more like I had a mini stroke and it cut off that worry area of my brain that causes butterflies and the dread feeling in my stomach. I feel just fine (until someone tells me otherwise).  I did ask J if she thought I had changed and she said "no".  She doesn't seem to have noticed that I feel differently about her and that there is a protective wall there that I have built just like I had to do with Rob because of lack of faith in their word. Do people tell me the truth I wonder because if they don't I am getting inaccurate feedback and I am a truth lover if nothing else....even if it hurts and even if I resist at first.  I think I can come to terms with just about anything after all this practice facing so many losses so it's not like I have a meltdown every time something goes wrong. Life has been tough.  And a tough life has taught me that suffering is but for a season and that this too shall pass and before you know it, it will be Christmas time again.  Life has been unfair but no-one is to blame.  It just is the way it is.
Solar light info station

I'm going.  I'll add some more of my photos later so y'all come back now.

Wednesday, January 18, 2017

Episode 45: Research Shows Cannabidiol Is Effective Treatment For Lyme Disease

Ernie Murakami

He recommends the paste, 10 mmol per cc hemp cannabidiol oil which is actually not the marijuana cannabidiol (with THC I assume) but Ernie implies that the cannabis oil with THC would be doubly effective.

Blake Graham used to be the other half of Theda Myint and I am mainly friends with Theda's mother in Perth these days. That was so sad. Blake will be working with Dr Ty soon; good luck Blake. This is what Blake wrote yesterday:
Finding my symptoms so hard to cope with lately and life such a struggle. 😕 I have four main symptoms which combined leave me in bed 20 hours/day and extremely limited in what I can do.
Talking for more than 40 minutes causes all the following symptoms. Tinnitus, dizziness, shakiness, weak, clumsy, body over-heating, exhaustion, cognitive problems, more sound sensitive, POTS worse, feel revved up and sleep disturbed. Five days ago I talked for one hour and am still getting all these symptoms and have been feeling very sorry for myself.
Light/noise sensitivity. Prolonged noise or looking at screens causes the same symptoms as above. I can watch TV or look at a computer screen for one hour max. I can't be in a noisy environment with people talking for more than 30 minutes. If I really push things it can be several days to recover.
Severe POTS. Being upright -> chest pain, tachycardia, dizziness, exhaustion, shakiness, cold/blue/painful feet, cognitive problems, etc. Unable to sit up more than one hour at a time. If I sit up one minute longer my nervous system gets fried with tinnitus, body over-heating, insomnia, shakiness, etc. which lasts days.
Severe weakness. Minimal physical activity even while lying down -> chest pain, tachycardia, dizziness and shakiness. If I go over my tiny limit I get two days of chest pain/tachy, tinnitus, body over-heating, insomnia, shakiness, etc. I haven't been able to wash my own hair or shave for over a year. I can but it takes two days each to recover from. I shower with a hand held outlet while lying in an empty bath and even that leaves me collapsed into bed for 50 minutes with chest pain/tachy and then shaky, clumsy, weak for one day. Walking to the kitchen and back is my walking limit and takes 10 minutes to recover from. Brushing my teeth takes 20 minutes to recover from.
These four combined are just awful. Plus after each meal my body copes with the above even worse for the following 50 minutes. I get chest pain, tachy, weakness after meals and if I sit up after a meal POTS symptoms come on way quicker and I get severe nausea. I'm in bed recovering after each meal. Arrgh.😔 


Stomach blocked Again boo hoo and ACE results negative


I still feel better in the dark.
I wish someone would fix this

First I had better guess that I passed all the imaging tests mainly because I have not heard anything and no news is good news right?  I know for certain because Dr Craig told me when I returned about my swollen leg, that my ACE levels were fine.  I was not sure about why he reminded me that the results are not conclusive but he did.  I kind of hope that means he approves of me keeping on looking. I don't like thinking about the calf swelling that wasn't a swelling because the darn tape measure recorded the same size for both legs.  Oh man, that was embarrassing in front of his medical student too but it still looks a bit deformed to me and I have been having at first intermittent strong cramps there and now one long cramp that does not stop but is tight rather than too painful and I didn't even mention it at the doctor.  I got tongue tied after the tape measure and then did my usual nervous stunt - babbling on. I was looking for something to get out of that appointment rather than get up and walk out of there and then..... I talk to think.  He was open to discussion which was even more unusual so tick, tick and the mind reminded me I needed another script for Maxolon.  So the appointment wasn't totally wasted but they did scare me on the Internet, those comments about going to Emergency.  It certainly wasn't cellulitis like Phoebe suggested.

The Maxolon aren't really working every time I take one with a meal but I have not got anything else that does.
Coronation Avenue, Golden Beach by me

So once I have a meal, I risk staying blocked for 24 hours uncomfortably I may add, blown up like a balloon, unable to pass wind, unable to digest, unable to lie down but I might get a good meal one time and a bad meal the next but it is not really the meal unless I have a problem with meat.  The only time I am more likely to get away with have say 2 meals in a row without blocking is when I eat totally processed food which I don't have to digest much, or rice bubbles or something that turn into liquid before you have finished chewing.  Prawn crackers are good for that and the local noodle shop often has huge bags for $2.80 plus it seems Milo likes them too.  I get away with stuff like that but then I am hungry again in 2 hours whereas if I eat the other kinds with fibre and meat, then I may only get a meal like that once every 3 days or 2 days in a row and then not again till I clear properly because clearing partially builds up over days.  It is so difficult to manage that once again I am tempted only to eat gluten-free junk food knowing I am less likely to suffer.  But at least I am getting away with a whole egg and not just the yolk a couple of times a week now.  That's good!  No hives so far.

Yes that is the edge of my car.  I pulled over especially for that tree.

I eat so many strange things now.  I still have pains from the last couple of days but I think that tapioca pudding I just ate has gone through already so I will be hungry again soon.  And ofcourse this way of eating is no good if I put sugar in to sweeten it up.  But so many of the sweet foods have sugar in them and while my fasting glucose is down to 5.0 like it was the day before yesterday I am not going to deny myself what's in the Devondale "Smart Start" or the yoghurt and I think I can tolerate the inulin on good days sis so I will keep it after all.  I've got some Tumerix if you want that because the H2 blocker interacts.

I've interspersed this post with what I call a golden rain tree.

Tuesday, January 17, 2017

Lively me and how I got here.


So do you want to know my secret? Steroid sprays. Rhinocort  for the nose and Symbicort for the lungs.  Who says that small amount has no systemic effects? I have not been so sharp-witted and marching up and down the house catching up on housework for a long, long,  time.

I still have the pain but it is a bit less I think because I forgot to take my Targin one night.

As for the leg calf bulge, it must be muscular because I've been getting cramps in the same muscle and neither magnesium or quinine are helping.

As for the weight gain,  it seems I have a type I (i)  metabolism since menopause according to a survey I completed.

Sunday, January 15, 2017

I've been much livelier because the eye migraine is under control

I have been much livelier for the past 3 days, going out each day but unfortunately mostly for medical purposes.  I have had a sinus CT scan, a plain xray, thyroid ultrasound, and a blood test for my ACE levels but I have no results yet.  It is now the weekend.  I went to 2 different doctors so it is going to end up a mess when my doctor on record finds out and gets her nose out of joint but at this point I don't care.  It was actually Dr Craig who OK'd me having the ACE level check.  Dr Raylea did not want to at this stage.  And everyone who reads this should ask for a thyroid guard when they have just about any imaging done including dental x-rays because you won't get one unless you ask for one.

Right now I suspect I have sarcoidosis after reading about it and the eye problems,  my unknown lung nodule and sigmoid colon granuloma fit right in with it.  I also had a biopsy of something that looks like a keratosis but it has grown since the skin check before Christmas even though I passed the skin check.  It has been both itchy and sore at the same time.  Like my eyes but my eyes have been bad for a long time that is why I had my last eye appointment for glasses earlier than when I was actually due.  And that was around my birthday and my eyes had been sore, blurry and photophobic for some time before that. On and off at first but now it is constantly there even though I have started taking the rhinocort that the optician O'Neil suggested, every time it got very, very bad and then bingo, it works towards a significant reduction of pain. I may have even blogged about it back when I first tried it.  I ran out of rhinocort around Christmas and I was not doing very well then.  I missed out on Christmas.  My eye was so sore that it felt like a migraine on one side of my head plus I had trigeminal neuralgia and still have.  If I stop taking the Rhinocort, I know it will be like hell again. A very strange way to treat a migraine. Other pain in the area could possibly be caused by my right jaw joint that went clunk one day and has been sore ever since....but I have had TMJ problems before so it is not new, except the clunking itself out of place was very obvious this time.  But you know me I can put something out by just bending over or looking upward or leaning to the position that I was forced to adopt when tutoring behind students at their computer workstations.  My elbows are still out of place or something too so much so that I cannot pull on the other end of a toy or rag with Milo because she shakes my her head back and forth sideways trying to yank it from me and she is strong for a little dog, so much so that my "tennis elbows" come right back and they are not insignificant pains either.  All that stuff reminds me of EDS rather than sarcoidosis so I will get back on track.

I did tell Dr Jo that what the optician recommended had worked.  She seemed to be pleased for me and she certainly did not tell me to stop using it which I had expected  just that because Rhinocort is a steroid.  The well-respected optician David O'Neil had suggested that the kind of pain I had and duration of it sounded more like a chronic sinus infection (and I thought to myself, "Like Lyme Disease.") and that it would not go away on it's own.  Like I said it reduced the pain within days but there is always a residual pain deep in my skull at about temple level and the photophobia is not eliminated by Rhinocort either but it helps a lot. I'm spraying once a day. I haven't found anything to deal with the blurs and swimmy patterns and floaters that are starting to make me feel like I have a flash of seeing something that is not there which is a bit disconcerting.  I have been sitting in too dim a light or else my eyes are going dim.  I can hardly see the keyboard after looking at the screen but I cannot put my main interest in life aside so I plod along at the computer anyway.  I don't want to go blind because life without being able to read on-screen or off would be intolerable to me. My mother at 87 is also worried about her eye sight but because of cataracts and glaucoma.  Glaucoma is common in Sarcoidosis too and it seems this Sarcoidosis can come in many different levels of severity. My sisters sarcoid lump went away.  Others have long-term chronic sarcoidosis and when you think about it, although Dad was diagnosed with non-Hodgkins lymphoma I would question that too.  The most common cause of death in sarcoidosis is cardiopulmonary. Sarcoids themselves are not malignant although they can lead to non-Hodgkins Lymphoma I read .
I'm the only one who used it this Christmas Just passed.

I have symbicort for my COPD that I was recently diagnosed with but those symptoms are the same as lung sarcoidosis so I don't know that it should be called COPD yet.  And Lyme disease has all the symptoms I have mentioned so far as well.  Lyme is well-known among the patient community as causing sarcoidosis too. Anyway it is too early to jump to conclusions but even the swollen belly symptom of gastrointestinal sarcoids is very familiar to me as you know.
15 years old, before glandular fever too
And I thought that was huge! 2001?

It is probably better that I leave you with something to read rather than me rave on about something I may not have, but it sure sounds like it with a deepening voice being added to the symptom list as I continue to research.  If I had my life over again, I would study to become a doctor even if I did not practice just so that I could have the perks like access to online databases.  Abstracts from research papers are often enough to learn a great deal in any case.  I was a research assistant and I was studying my Masters Degree so let's just say I already know how to report in an unbiased way but I am NOT attempting that in this blog because I have found that personal experience of your own body is a pretty good determiner of gut instinct too.  This is the first time I have felt that everything would fall into place with this diagnosis.  It is just a gut feeling more so than worrying about something that might not happen.  I'm not scared........yet.

But first before I get into the more official publications, one final co-incidence after finding out I had gg grandmother who was Creole.  The bit about sarcoidosis occurring more frequently and being more severe in African-Jamaicans (other African populations and the Finnish populations too but not Asians or Australian Aborigines. To me that means that everyone in my family needs to get their ACE levels checked to rule out sarcoidosis because it seems like it can cause just about any symptom depending upon where the sarcoids are and how many there are.  I wonder how Brett's pulmonary Langerhan's Cell Histiocytosis fits in.  He has not had any problems for ages though but do you remember that unexplained rash he had?

I had a punch biopsy yesterday as well and this was what a bit of, was sent to the lab.  I just happened to have the pleasure of allowing a medical student to perform it. It was his first and he did well. Not that I have ever had one before.  I asked Craig to do the injection though because that is the worst part.
I keep adding to this entry because I keep forgetting things.

This photo was, taken on a day I was puffy with fluid or something, shows another mark that I asked about but Dr Craig was not worried about it. I've got a few bruises at the moment too but so has Flora which I know worries her just like they did Ninnie.
This is what it looks like today.  I can finally have a shower and wash off what is stuck there today about lunch time.

Thursday, January 12, 2017

Monday, January 09, 2017

Doctors can be retrained too if they would eat humble pie first

The Blue Ribbon Fellowship
The Blue Ribbon Fellowship will offer medical students a chance to spend their summers studying at some of the top neuro-immune institutes in the world. It is a vital part of this documentary's outreach to the wider medical community. We hope these new young doctors, trained in diagnosing and treating ME/CFS, will re-invigorate the field and will devote their careers to solving complex, chronic diseases. Get ready to come together to raise up "Generation Cure."

Posted by Forgotten Plague on Monday, January 13, 2014

Saturday, January 07, 2017

Our Jamaican Heritage and Health Report

Samuel Edward Moore Sr and Mary or Elizabeth (?) 


Saml Ed'wD Moore Jr who married Ellen Tucker in Surry, Kingston, Jamaica.  Ellen Tucker's parents are unknown (so far)

Ellen Tucker (Creole, person of colour, probably out of slavery by then) who had resided at Water Lane, Kingston Jamaica when baptised at 13 years old by the Church of England in December 1845,
Samuel (Saml) Edward Moore, son of Samuel Edward Moore Sr (?) in Kingston, then boarded the Glentanner ship.  I have heard that her age was lied about at around this time. They emigrated to Australia and the gold fields and 


Susannah Louisa Moore. (Mulatto?, my Great Grandmother)

Carl Heinrich Johannes Peters married her in Ballarat.  They had many children and 


Ernt Angus Peters (and Reuben Carl) in 1899 by which time they had moved to Melbourne where 

grandpa's mother, Susan Louisa Moore died the same year from complications arising from my grandfather's birth and he had the dubious honour in the family of being the one who killed her.  Any trace of colour was gone after that in my side of that family. Ernest met and married Marion Elsie Bray and 


Donald Peters and Malcolm Clyde Thomas Peters 

Malcolm Peters married Lucie Joan Greenwood and


me then my sister.

At one stage my Great, great grandmother Ellen Tucker became very sick (with sarcoidosis?) I have read from other researchers and her husband Saml could not look after her.  She was sent to live with Henrietta (not sure who's Aunt - ours anyway) in Coolgardie, Western Australia where she died (having outlived her daughter I think?)

I have found a Samuel Edward Moore listed as being in the artillery at Port Royal and there are plenty of canons at the Forts there, just check out the Google Maps photos.  I am not sure if this is the right person though.  Water street, where Ellen Tucker lived runs along parallel with the Water but back a bit from the big harbour and a lot of the street is now a big transit centre.

It all gives me something pretty new to dream about when I can't do much of anything else but like I said to you sis, I'd love it if we could go there someday. I'm not that into Reggae myself though.  The only other place I have wanted to go all my life but not particularly seriously is to see the Aurora Borealis.

I'd like to recommend a movie, available on Netflix with Hola set to United States.  It is about a lady also trying to find her coloured roots.  It is called Palm Trees in the Snow.

I have not been having a good run health wise, with severe eye pain and photophobia and an associated mainly one-sided headache with a few trigeminal nerves thrown in paining down to my missing tooth and across to my right ear.  This started before Christmas and has been quite debilitating.  My pain levels seemed to drop a bit when I first took the B12 sublingually again recently but today I am having an even worse flare of pain and stiffness that does not feel muscular.  Some is joint pain but some is sheet pain and the skin sensitivity is so bad today I screamed when Milo greeted me with her usual hind-leg stance placing her paws with their claws above my knees. Her constant pawing makes it worse.  But you know I love her anyway.

Yesterday (and before that too) I woke in extreme pain and along with the burning gut/stomach which has become a rotten new normal thing but it does subside after a coffee or two and sitting up for a couple of hours.  It usually takes that long for the pain killers to kick in on the rest of my body-wide pain anyway.  Two hours is too long when I have to face another period like that in the afternoon, well before the meds are supposed to have worn off.  So I wait, take, then wait again.  I need these pain killers more frequently to cover me 24/7 but I cannot get into the pain specialist before March.  And I also need to discuss what to do when my stomach or whatever it is gets blocked and the pain killers don't work at all.

Yesterday I was shocked to find that getting an appointment at Coastal Joint Care was going to take until September.  MyI swapped doctors this time.  I cannot handle that Lyme-hater Peter Nash and I have heard good things about Louisa Voight from an online friend who is local called Kellie.  She is not the first person who has recommended this doctor to me as one who will not give up looking for answers like all the rest do.  September the 4th is such a long way off!  I still have not talked about Christmas-New Year.  It was not the nicest Christmas because I spent it alone.  I missed not getting to see the kids open their presents from me and that is the fun part.  I also could not eat because of a stomach on strike so I really have just been patiently waiting to get better.  I woke up more alive yesterday but a MMA and gastrin and a few things blood test outing may explain why the afternoon was not good.  Not that I exerted myself apart from getting in and out of the car.  It is all pretty bad and I have more or less given up on the idea of seeing my sister for her birthday in February interstate.  Sad for me.  Disappointing for Mum and sis.  Anyway I am in yet another kind of flare up where lots of my insides hurt.  And I have the bowel problems as well as the stomach problems.

Maxalon seems to work as a prokinetic for my stomach to some extent if I take it every meal but then if the bowel is also sluggish it can cause problems further down.  It is so hard to balance everything and know what to eat or not.  Erythromycin is my preferred prokinetic because it works fast but it is an antibiotic and I can't find out how to get any with a doctor's blessing.  They hate the idea. Maxolon seems to work better than Domperidone (Motillium) which is weird.  I got no repeat scripts for it though.

Thursday, January 05, 2017

Music created to reduce anxiety by 65%

According to Dr. David Lewis-Hodgson of Mindlab International, which conducted the research, the top song produced a greater state of relaxation than any other music tested to date.
In fact, listening to that one song -- "Weightless" -- resulted in a striking 65 percent reduction in participants' overall anxiety, and a 35 percent reduction in their usual physiological resting rates.

Monday, December 26, 2016

Merry Christmas Everyone. Enter recovery phase.

We pretty much all know the behavioral ways to recover from or reduce the length of a crash or flare are pretty simple. Depending on how hard you've been hit they consist of things like cutting down activities (just say No!), reducing stimulation (turning off TV, music, turning lights down), getting to bed earlier, and reducing stress (meditation, visualization, stopping catastrophic thought patterns).
The question this resource asks is whether we can do better than just waiting out a crash? There are certainly no guidelines on how to do that but some ideas are out there. First check out suggestions on how to recover from a crash from Hip, a patient who has studied the disease extensively, then from a blog by a PhD, and finally from a survey taken from the ME/CFS/FM communities.
From PEM Busters for Physical Exertion
  1. Creatine hydrochloride - 2 grams 
  2. Citrulline - 1000 mg 
  3. Branched-chain amino acids (BCAA) - 5 grams 
  4. CoQ10 - 800 mg 
  5. Sodium bicarbonate - ¼ teaspoon (1.5 grams) 
  6. Catalase - 600 mg (taken after exercise) 
  7. D-ribose - (5 grams three times daily) 

All the above should help reduce PEM from physical exertion. These supplements might be particularly efficacious at preventing PEM if taken an hour or so before doing some unavoidable physical exertion.
RATIONALE: PEM Busters Work in Part by Neutralizing Lactate or Reducing its Production 

PEM Busters for Mental Exertion (eg: hectic social or professional events):
  • Prednisone at a dose of 20 mg or so taken 4 hours before the event. Some ME/CFS patients have vouched this works very effectively and reliably (though others report ill effects from this corticosteroid drug). See this thread. But also see the warning in this post (which cautions against using prednisone for any extended period of time, and warns that the PEM protective effects do not work for the whole day, they seem to wear off after about 6 to 8 hours).
From Mitochondrial Dysfunction, Post-Exertional Malaise and ME/CFS by Lucy Duchene -for ME/CFS/FM patients with mitochondrial dysfunction

Recovery from prostration fatigue
  • Vitamin B-1 (thiamine) (100 mg twice a day)
  • Vitamin B-2 (riboflavin) (100 mg) 
  • Biotin (5 mg twice a day) 
Postponing build-up of lactic acidosis
  • Time-release guaifenesin (600-800 mg) 82
Dr. Goldstein's "Resurrection Cocktail"

Dr. Goldstein's "Resurrection Cocktail" is a different kind of crash buster. It was an IV push that helped to get really sick patients - people who are essentially in a severe crash all the time - out of their beds. It was not a cure - just a temporary aid - but it did get them going for a time.
  • Ketamine
  • IV ascorbate
  • IV lidocaine
  • IV thyrotropin- releasing hormone (which raises all biogenic amines plus acetylcholine)
  • Nimotop
  • Neurontin
Find out more about his "Resurrection Cocktail" and why he chose the ingredients he did.

Further details and associated research papers for each supplement are available on Cort Johnson's Blog Forum from where I copied this extract.  Cort Johnson's research summaries and explanations are highly respected in the chronic illness community by patients, researchers, pharmaceutical and health supplement industries and doctors.... especially doctors who are also patients.

Unfortunately the only way to get the prescription and IV services described above is to go to an alternative medicine practitioner who is also a General Practitioner (Doctor) or an ME/CFS expert specialist.  Mainstream medicine provides no treatment at all and the ME/CFS specialists are difficult to find unless you are able to travel overseas and attend a specialised clinic.  A naturopath or osteopath may be able to service some of these recommendations.  Lyme disease experts usually have a background in ME/CFS and fibromyalgia as well as tick-borne diseases.  Good Luck and Happy New Year.