Kayak Man

He went fishing this way while he was here up Bell's Creek and saw a Sea Eagle

We could have had a nice home-cooked meal together but Nick didn't want to bring him back.  I even made a carrot cake to follow the schnitzels.  It seems I enjoy being an old-fashioned Mum at times.  Brett lives on frozen chicken rolls because they are cheap from the local IGA.  She eats for nothing at her place of work and often brings Brett a meal.  They don't do much together because of her night shift.  And she works weekends.  The last time Brett was here was when Nick got married Feb 2017 and Brett was best man. But now Nick and the mother of his new children are separated. It's all just drama and I don't have to be a part of it.  Brett doesn't want to be either.

He says there is too much traffic here on the Coast for his liking.  He likes it out there better but he does not like her job.  He doesn't like his much either. It seems to involve macerators and pig shit.  Welding with a putrid smell.

Just stuff

Computer Corner

A walk from the doggy park

Dangerous under foot

First new shoots and catkins

I planted a Pomegranate yesterday

Local stuff

Volume problems: talk about the "Infiltration basin" and how rare it is to see a boat that big in our bit of the Pumicestone Passage.

Blast from the Past

Heart Failure with preserved Ejection Fraction (HFpEF)

Having health records online may be a risk to privacy but the X-Ray and Imaging chain of imaging services offer an app when you go there for a procedure.  I took the pamphlet and I signed up for the service so that I could get my results for my recent echocardiogram.

I saw Dr Jo before the results were available online anyway and I came away thinking that nothing much had changed except for the fact that that the pulmonary valve stenosis had reappeared in my life.  The last I knew of it was that they had decided via a past echo that I didn't have one.  It turns out that it has been on record again since 2011 when Dr Fleur must have ordered an echo.  We spent time discussing this at my doctors appointment because Dr Jo was also unaware.  Nevertheless it is only a minor stenosis.  Everything came across as minor the way Dr Jo gave me the results.....  the slight mitral valve weakness, the minor pulmonary valve narrowing and some diastolic abnormality that I barely took notice of because she said that the main thing was that I had a good ejection fraction of 65%.  I did not realise the significance of that.  It sounded all pretty "normal" or rather "benign" like my murmurs have been described in the past. 

I have known for years that my diastolic blood pressure was too low and I have been surprised that no-one bothers to look at it even when I have provided charts of readings.  It is always the top blood pressure reading they care about and it has been getting up rather high for me, over 140, lately but only at the doctors.  At home it has been higher than normal though.  I have also been carrying fluid around my lower legs and feet.  That's why I had the echo, for pedal edema.  I've been getting a lot of imprint marks from even loose socks and my boots on my legs and out-of-shape dispersions of fluid after I take them off.  Dr Jo did see a similar raised area when I was there.  It all got confused with my right foot being larger but later I remembered I had indeed dropped something heavy on my foot.  The more general swelling seemed to come upon me when I went for slightly inclined walk up to the surf-life saving tower at Currimundi Lake.  I could also feel fluid in my fingers that day.  My knees have felt tight on bending and I have wondered if it was fluid in there too.  Anyway I've noticed the puffiness in low places since that day.  I was there with a couple of other ladies who have fibro and/or cfs.

The little conversation group we had formed on Facebook had been trying to get together face-to-face since the May 12 Awareness Day event.  All but Anne (the one on the right) had to miss that due to not being well enough.  It was the first time we had heard of something local to participate in. The May event was in support of #MEAction. 

Two other ladies could not make it to our own little get together in July but they live beyond Caloundra in Buderim.  Small distances matter when you have limited spoons.  We have another lady in Ningi which is too far for us but her hubby gets her around sometimes.  She came to meet me at a birthday gathering I had at the RSL one year.

Anyway getting back to the report, it states quite clearly that I have grade 2 diastolic dysfunction and Wikipedia defines that as:

There are four basic Echocardiographic patterns of diastolic heart failure, which are graded I to IV:

• The mildest form is called an "abnormal relaxation pattern", or grade I diastolic dysfunction. On the mitral inflow Doppler echocardiogram, there is reversal of the normal E/A ratio. This pattern may develop normally with age in some patients, and many grade I patients will not have any clinical signs or symptoms of heart failure.
• Grade II diastolic dysfunction is called "pseudonormal filling dynamics". This is considered moderate diastolic dysfunction and is associated with elevated left atrial filling pressures. These patients more commonly have symptoms of heart failure, and many have left atrial enlargement due to the elevated pressures in the left heart.

Grade III and IV diastolic dysfunction are called "restrictive filling dynamics". These are both severe forms of diastolic dysfunction, and patients tend to have advanced heart failure symptoms:

• Class III diastolic dysfunction patients will demonstrate reversal of their diastolic abnormalities on echocardiogram when they perform the Valsalva maneuver. This is referred to as "reversible restrictive diastolic dysfunction".
• Class IV diastolic dysfunction patients will not demonstrate reversibility of their echocardiogram abnormalities, and are therefore said to suffer from "fixed restrictive diastolic dysfunction".

I also have the left atrial enlargement.

I also have plenty of  breathlessness.  I was blaming the ME/CFS.  However currently I am experiencing a high number of palpitations and it has been going on for weeks.  Everything could be worse since going on the Olanzapine.  I have had these heart symptoms in the past including pain in a very focussed area under my breast.  I would call them pains, rather than one continuous pain.  I have had it all before and it has all gone away after a season of it.  I usually go on the Deralin but lately I noticed that I have been too dizzy on it and that I just don't feel like it is helping properly.  Surely it slows down the heart palpitations, even can cure them but...lately my bottom blood pressure has been so low on it that all it is doing is widening my pulse pressure (the difference between the top and bottom) and when that happens I do not feel good.  Helping in one way and making things worse in another.  I have not actually told anyone about it.  I have just tended to put up with the heart palpitations instead of taking the Deralin.  I think I need a heart doctor.  Why wouldn't Dr Jo suggest it that day?  All I can think of is that it used to be thought that an ejection fraction above 50 or 60 meant that there was nothing wrong but now days they acknowledge a kind of heart failure that still preserves the ejection fraction, which means its systoles doing their pumping-out are fine.  It is called diastolic dysfunction or diastolic heart failure but it is heart failure with preserved ejection fraction (HFpEF).  Wikipedia goes on to say that there are few treatment plans for this kind of heart failure, except for diuretics to bring down the fluid levels in the legs or other places.  It seems to be emerging as an ever increasing problem but insufficient research has been done.  Where have I heard that before?

But there have been studies on older adults without systolic hypotension and with a wide pulse pressure, showing that isolated diastolic hypotension was associated with a significant increased risk of new-onset heart failure. Reference: Guichard et al available at https://www.ahajournals.org/doi/abs/10.1161/circ.122.suppl_21.A19925
The word "isolated" just means in the absence of.

Heart failure with preserved ejection fraction (HFpEF) is an emerging epidemic and there’s no pharmacotherapies yet proven to be useful for it,....... 

https://www.6minutes.com.au/news/get-ready-next-cardio-epidemic

Going back a few years, it was quite well known in the patient population that me/cfs caused diastolic (filling) dysfunction.  Dr Paul Cheney was the main man if I remember correctly.  I may add to this post if I find any of his papers warning of the cardiac problems in ME/CFS.

Please add any relevant papers that you have come across in the comments section below.

Help me, a Rat

"PAIN Making" written by Derek Morrison

‘THE ONGOING ADDITION OF DOCTORS’.

Today, here in Australia and around the world patients are being not only harmed but disabled due to the continued use of ‘off-label’ Injectable chemicals into the cerebrospinal fluid of the spine without Regulatory Approval. Epidural steroid injections for instance are a classic example of this today through such being used on ill-informed or non-informed unsuspecting patients and in some case directly ‘ordered by Insurance Companies’ to “hopefully” improve their moveability and able them to return to the workforce. Those that carry out these procedures have ‘also’ been ‘mixing’ two or more of these ‘off label’ toxic chemicals together, and injecting them Intrathecally into the patients without any awareness such was safe or had Regulatory Approval.

The question is ‘why’ have they been allowed to do so for decades without being challenged, “is such safe”??? The answer to this, is when such injections started way back in the early 1920’s in fact 1921 there were NO regulatory requirements Governments placed the trust and expertise in the hands of the Medical Profession without any checks and balances in place. In fact, the first injectable toxic chemical used as a dye in x-rays soon led to Chemically Induced Adhesive Arachnoiditis within the subarachnoid space, [spine] and due to such was stopped not by the Government but by the end-users themselves, the Doctors injecting such into the patients. This was due not so much for the welfare of the patients, but for ‘self protection’ legally.

The American FDA being the World Regulatory of new drugs had in place by the early 1900s a set regulatory requirements known as a New Drug Application [NDA] for Companies wishing to submit a new drug for Marketing. What was NOT in place was a set regulatory requirements for Companies wishing to submit an application for a General Marketing License for diagnostic radiographic x-ray toxic contrast mediums. [Dye] for until then end-users were using ‘Air’ in such procedures. [“Air is cheap”]

A specific regulatory requirement on x-ray contrast mediums [dyes] never arrived until 1969 almost half a century later, due to the thalidomide issue, by this time the medical profession had injected this “dye” injuring close to 60 million patients throughout the world 20 million of these in the US and tens of thousands here in Australia without any knowledge of doing so. Why was this? Well those carrying out these injections were not ‘linked’ to the patent’s GP, Specialists and such like, furthermore, the development of chemically induced adhesive arachnoiditis is insidious. The slow damage to peripheral nerve roots and the related man-made disability for many [but not all] develops over time and a relationship to the cause, a past injection of what was deemed to be safe, was never considered.

Today, here in Australia and around the world the practice of ‘off-label’ use continues without any Governmental oversight or Regulatory approval of such practice in place. I believe not only these end-users need to be held accountable BUT also the Government Regulators, of each of the 107 Counties where it was used, sadly many of those once employed by these Government Regulators throughout the world are NOW working for the the Manufacturer’s or subsidiaries.

My Blog explains how many Australians today have been harmed by this unregulated x-ray dye and ‘other’ such injectable substances into the CSF of the spine [and elsewhere]. 

The first contrast medium causing horrendous pain and disability was lipiodol an x-ray oil based dye (1921-1946) then came Iophendylate Pantopaque or Myodil another oil base x-ray dye [1936 – 1996] causing chemically induced adhesive arachnoiditis.

Also, my research and that of others show that even the newer water base x-ray dyes cause chemically induced adhesive arachnoiditis and the related horrendous pain and disability.
It's clear today, what has happened and its cause, it's now up to you the reader to understand how this was allowed to happen.

PLEASE FORWARD TO OTHERS ESPECIALLY THE MEDIA.

Scott's car juggling Day surprise visit

It's a VW.

On August 3rd

This are the ones that got deleted on my iphone so I could not send them that way.

Car juggling act

Alan Watts ~ Go WIth It

I have to!

I'm still alive but I had a bad run

I'm still alive but I had a bad run haven't I?  Ever since missing my birthday outing back in April.  I would add relapse upon relapse whenever I went out starting with masked people in doctors' waiting rooms.  I cancelled so many important appointments even after re-scheduling twice so I still don't have any advice about zinc, copper and pyrrole disorder or if I have the HLA gene because Bli Bli clinic will not allow results over the phone, not even an "action" clause.  He does not even work there but seems to use their reception people this Dr Osbourne does.  I had better make an appointment now that I am well enough to go.  I had to cancel dental appointments even though I lost another tooth during this time and my denture needs to be replaced or fixed so I cannot have a nice smile yet.  I will have to go on a denture waiting list after tomorrow's socket check (and fillings) because I had a major dry socket and lots of tooth shards painfully emerged from there over these months.  I think it has all stopped now so I am ready for my smile.

I have so many photos to post anyway because there have been changes to the yard around here and it all looks different and since my energy levels have picked up, I've been getting out of the house if only to go to doctors appointments and taking photos on the way home.  I have to catch up on so much housework and yard work.

The strangest thing that happened was the switch that flipped a couple of weeks ago inside of me that made an instant change from constant faecal loading and gastroparesis and associated bowel obstruction attacks and fluid diets; to sudden onset anxiety and its associated intestinal hurry.  So I went from fighting constipation to being a mental basket case.  I always used to say when I was young that worry kept me thin because it kept me moving in more ways than one.  Well I'm moving again, that was until I was put on Olanzapine for the agitated depression symptoms.  Dopey and well now but with more pain because I am moving my body so much more relatively speaking.  I will add some photos later.

From Jungle to Desert in One Day thanks to Housing Department's way

It will now lose all its leaves without shade

The bare ground is where the pepper tree canopy blocked out light

Lung scan results for March 2018 received in April - Lung Nodules Vanished

I was given a dye contrast for the last scan which I was not happy about.  I did not react to it in any obviously adverse way.  I was so eager to get my results because I had been feeling so well since taking the prednisolone (in the fluey, fever department) it was really hard to believe I may have been on the road to Adenocarcinoma (lung cancer).  I had other "body" problems but I was not feeling ill and I had energy even if I could not make the most of it due to migraine and heat intolerance and gut problems. 

I had an appointment with Dr Craig Wright on April 6th and it was there that I was pronounced cancer-free.  He said it could not have been cancer or pre-cancer in the first place because their "nodules" don't disappear and all mine had "resolved".  Yes, I celebrated with gratitude and relief and passed on the news to family so that we were all free of worry now.  I told you I did not feel like I had cancer.  The doctor was wrong and I am glad.  Thinking back I should have said something about the worry he caused us all but all I wanted to do was kiss the man who was delivering the news that cost $175.  I will never know what the cause of the lung nodules was.  He did not need to schedule another appointment so I left never to return.

Christmas - Boxing Day Stories 2017

Overnight visitors

Those lights broke down 2 days before Christmas.  I had them 2 weeks all up.

The first time ever Milo has ruined food she was not supposed to get at, at the table.  Butter Icing, yum!

 

If you read this paper, you will find out Borrelia Infection has stages like cancer if left unchecked

Helen, Marlene, Beau, Brett, Bev and Kerry visiting the man in a coma.  I sent a card with Scott after he came back.

Roger was brought out of the coma on Boxing Day in Toowoomba. Roger was discharged from Jandowae Hospital where he was born, two days ago.  He's taken a journey West via ambulance via Dalby Hospital as he has improved but I knew none of that while it was happening.  They are calling it a miracle and back from the dead but I think he hopes that death wasn't the case because there was too much of nothing there.

Post-sepsis syndrome? Too early to tell but the only main problem he has is not being able to walk properly.  Now we both own wheelie walkers.  Actually Sharon has mine at the moment because she is dying at Jan's place with lung cancer.  I haven't needed the walker since I started taking steroids full-time.  Sharon has not been given long to live and I will miss her.  The diagnosis was only 2 weeks ago but it was obvious something terrible was wrong with her.  She had already stopped eating.  She was measured at 35kg.

The circle of life has brought Roger back full circle to where he knows so many people from the past.  It seems he will have a trial living in the 3rd house on Ben's farm to see if he can manage. Zach and Red (?) have the second house because they run the property these days with Ben retired. The mind boggles at how a step-son of Roger's could end up managing a million dollar property, not that I know how much a huge farm is worth.  It was my kids who spent time with the Tanners but I guess it solved a problem for two people.   Zach isn't exactly a city person having lived in Clifton-Nobby.  The house where Roger will be is Ben's Mum's old house, perhaps the original farm house and he stays there whenever he goes out there.  Back to Jandowae - Burra Burri, with Bev for the first two weeks.  Without Bev when she goes back to work.

That cough and fever went away but still diagnosed with lung cancer

In December 2017 I tried  out a vaporizer.  As a tobacco smoking substitute, it tastes horrible.  Not doing it.  However also in December I felt like my cough went away, that extra cough I had and most of the lung noises with it went away.  I was still smoking roll-your-own tobacco.  Also sometime in December I stopped having fever-like sensations and the associated rise in temperature. That had been going on all year.   I had had a repeat lot of Clarithromycin by then but only for another week and this phenomenon of vanishing cough, I only noticed weeks after that.  I'd like to think they helped me kill off something that had been an added chronic burden but you couldn't say, after that delay.  I also had been taking 5mg Prednisone for quite a few months by then and was feeling much better for it and now quite mobile without any thought to an aid.  Anyway, the cough is gone for the most part and what is left is probably mild emphysema.  Although Dr Craig referred to it as is moderate emphysema.  I would love to say that all the lung nodules have gone away too but I had gotten really bad news about them from Dr Craig Wright {respiratory physician} and I haven't been game to write it, because either I have been in denial or it is just another misdiagnosis.  It is hard to believe especially now that the cough thing and fever have gone.  I will find out more when my next scan is done in March.  Here's the "cancer" story.

It is Dr Craig Wright's favoured opinion after looking at my most recent lung CT that I am "dying slowly" [his words, farking hell] of what will end up being adenocarcinoma.  At this stage he says if I had a biopsy it would show "atypical adenomatous hyperplasia" (premalignant) and he said it is always progressive which is hard for me to believe.  Always?  Anyway they can't do a biopsy while they are less than 9mm and mine are less than 2mm so he can't know for sure.  The only reason for rejecting a vasculitis diagnosis is the fact that my ANCA was equivocal (neither one way or the other) however two of those ANCA's have shown up over the past few years and I think it was the MPO one that has been positive aka "reactive" at least once.  I am not sure how having neutrophilia during a lot of 2017 if not still (I cannot get detailed blood test results from Dr Jo) has affected those readings since they are antibodies against your own neutrophils. (yes, autoimmune). He said I would die and I felt like this man was "pointing the bone" at me and I did not really believe in that power.  Ofcourse, when the cough and fever went away I was even more sure that this doctor has made a "wrong" diagnosis.  But I had to live with it until I could prove otherwise at the next CT scan.

Lung cancer has been in the foreground particularly in Jan's life but I socialised with the whole family too that seems to have had lung cancer go through the family like it was a virus.  First it was Sharon's Mum, then her Dad and now she has been given a few weeks to live, told just over a week ago and finally sent home from hospital to die at Jan's place.  Jan is taking on a real burden isn't she.  She said she would do the same for me but she has not been confronted with a dead body yet (aside from her Mum once).  Sharon's sister and good friend are also taking it in turns to be there but it is Jan's home.  Sharon's home has to be cleaned out and with her clothes stalls market produce, it has always been a mess but everyone else is taking care of that upstairs.  The Department of Housing said all her gear had to be gone within 2 weeks of her death.  Her son B has to move out because he was never on the lease.  Sharon has the money to pay for what she needs but she is not allowed to be given oxygen for free because she is a smoker.  I know they like to threaten smokers these days but being denied oxygen so you can stay in your own home for the dying process is wrong.  There is hardly any point her giving up smoking now because it won't make any difference to her death sentence. 

Sharon was only 35kg when she first went to hospital because she had not eaten properly for years.  It felt like hair in her throat and chest she was swallowing and getting stuck she said but she has also talked about glue on her skin and scalp so she got her head shaved to get rid of it last year.  Jan has always thought she had lost the plot when all that started up but the actual main cancer mass is in the throat and top of chest area making it hard to breathe.  Her breathlessness has escalated more quickly recently and the strain on her heart is likely to cause it to stop because of another condition they have reported that she did not know she had.  Of course she cried when she found out how short her life would be but she is not in any hurry to die.  She has no pain so why would she be?  It was the lack of pain that kept her in denial because her parents had plenty in the end and the morphine was turned up on both of them.  They even gave Sharon all her morphine for the "future" all in one go.  She is on a small dose now.  Jan says it keeps her calm they said.  She said it helps suppress the cough but they also put her on steroids which has made her hyper and unable to sleep so that is a weird treatment.  Sharon could have gone to Nambour Hospital or Caloundra Hospice but she did not want to go.  Her mother died in Nambour and her Father died in Dove House Hospice so you can't blame her.  I loaned her my walker and someone else has just offered a wheelchair and in comparison to her housebound life before, she is just getting more and more tired.  Visitors all the time and someone to sit up with and talk to during the night.  She would not be getting anywhere near the rest that she was getting at home before she went into hospital.  Her life was just as tiny as mine.  Not that I'm bored.  Everyone makes that decision for you, that your life is somehow not good enough but recently an ME lady died that I heard about.  Anne.

At the end of her life, Anne wrote: “If, hypothetically, the physical suffering could be taken out of the equation, I would have been able to live contentedly even though my life continued to be restricted to my small apartment and include very little activity. Unlike most people I could find such a tiny life bearable and even happy.” But Anne’s life was not tiny. She achieved more within her restricted circumstances than most people could. I am so sad that she is gone. Everyone who loved Anne is in my thoughts, and I hope that people with ME will remember her. She shared so much of her “tiny” life with us, and tried to make our lives better. Read More about Anne.

Anyway, I have been given strict instructions not to die within the next 5 years by Jan being the one that seems to bare a lot of the burden and worry from lung cancer in the life of her friends but not in her.  And I will let you know the results of my next scan in March 2018.

Story of a Cough

I have a cough that I had come to  think of  as just one more annoying symptom in whatever chronic disease I have. I am reviewing my cough today because it should be seen in a different light since the discovery of multiple nodules that were found in my lungs last month.  15 months ago there was only 1 lung nodule and at first, it seemed like that it was going to stay that way but now I know I look like a light-covered Christmas tree inside because I saw the scan at Dr Louisa's rooms last Wednesday 13th September.  It looked something like this:

I want to start at the beginning of this "extra" cough.  I always have coughed to clear mucous and I have had a post-nasal drip as long as I can remember so there always is mucous for me to cough.  But it is just a cough that does what it is supposed to.  Obviously this cough has not been a problem for most of my smoking life either.  Not like when I've caught a cold or something that seems to make smoking totally irritating.  That's the kind of cough that drives you crazy because it does not stop when you are not smoking and it always seems to be worse at night lying down in bed.  But those coughs don't last very long and smoking goes back to being something that does not irritate any of my tubes.

A few years ago, I managed to swap smoking cigarettes for vaping a liquid that contains nicotine.  It was not as straight-forward as I would have liked because I found certain combinations of devices (the e-cigarette) and liquids (flavoured, unflavoured, PG versus VG)  problematic because they made me cough but I eventually settled into a routine of settings on the device and I decided on unflavoured nicotine juice in the strongest nicotine content you could get.  It so obviously worked for me because I did not miss smoking very much at all.

I decreased the use of the nicotine replacement over time and I was vaping unflavoured 0mg nicotine juice (60:40 PG:VG) at the time this story of a cough begins.

I was not vaping very often throughout the day when I began to notice that vaping was making me cough.  I cut down on vaping even further because of this but it was not something I chose.  It was because of the annoying cough that I could only stand a puff or two.  I have no idea where the cough came from and I do not recall associating it with any cold or virus or family or friend's cold or cough (or anything).  The problem was that at the time, I was feeling depressed about my life with chronic illness and the horrible antibiotic treatment protocol I was on with its ability to flare up pain after each Bicillin injection and many other side-effects or herxheimer reactions whatever they were.  I persevered with the antibiotic treatment because it was the only way to rid myself of Borrelia, Bartonella and perhaps Babesia which I had been diagnosed with.  The point is that I was depressed.  And I was choking and coughing my insides up every time I tried to vape and it wasn't going away like it would if it was from a cold or something I had caught that was causing this extra coughing.

I used to have a friend who came to visit me up to a couple of times a week if I could not get over to see her.  She was a smoker and we had been smoking buddies while we talked.  I tried one of her cigarettes and I did not cough and splutter like I did when trying to vape.  It was so weird but I began to think I had developed a sensitivity to the vaping liquid but not cigarette smoke.  Because I had not been adding nicotine in my vapes, I got quite a head spin from smoking my friend's cigarettes and for some stupid reason it made me laugh.  I had been so depressed and here I was laughing at my own head spin sensation.  I guess it was not so subconscious but I gradually built up the number of cigarettes I had and I borrowed then bought even more for Ron so to be fair on my friend within a month I had bought my own tobacco and I still do buy it and smoke it. I smoke like a chimney but I miss the vaping.  The tickly sensation from vaping that caused me to cough and splutter, I did not miss.

Last year I some tests run as requested by a specialist and they incidentally showed a small nodule in the upper right lobe of my lungs.  I was told it could be anything and that it required monitoring.  I think the second scan was three months later and because it did not show any changes I did not have the next scan for a year.  I wondered if it had anything to do with this newer onset cough but most times a stethoscope was used, nothing was heard coming from my lungs.  As per usual, one cough and any mucous was gone and my lungs sounded as clear as a bell until this year. It was getting harder to clear this mucous with just one cough and it even seemed to come and go every couple of weeks.  I was making lots of noises and rattles and wheezes and at night time my lungs would "snore" not my nose.  A couple of coughs and it was cleared and I could go straight back to sleep. My GP diagnosed asthma after hearing something in there but did not prescribe me anything until a couple of months later when I asked if I could go on a preventative because I have enough problems with a racing heart to be able to enjoy any relief from Ventolin.  At this point the doctor changed my diagnosis to COPD (because of my smoking) and gave me a Symbicort sample inhaler which seemed to help eventually but the most newsworthy improvement was the return of my singing voice.  My voice had been getting lower and croaky over the past several years and it often cracked when I tried to sing but a couple of months into the steroid spray I could call out and sing with more range before something would crack or croak.  "Bonus", I thought. I love to sing but not if I can't control my own voice so I felt like I was getting back some control and even imagined myself joining a choir or group.

The novelty of curing my voicebox with steroids waned when I was told that my most recent scan shows "changes" which maybe suggestive of anything but it could be an infection.  When I got my hands on the report I read a little more detail but for over a month that's all I had to go on.  I was given a course of antibiotics for a week. Two antibiotics (Clarithromycin and Amoxillin) with a view to shrinking an infection in my lungs and then I had three weeks to wait for a repeat scan and somehow get hold of the results. I was told it could be cancer or an autoimmune disease instead of an infection and I worried a bit in that wait time.  The cough actually got worse while I was on the antibiotics, heaps more mucous and I started getting pains in the chest, from the coughing I thought.  Even my heart hurt when I coughed but surely not.  I did not feel like I was on the antibiotics long enough to even show some promise of healing but at the same time I hated what they did to me as I switched from constipation to close to diarrhea so I was glad to stop, but the gut pains only got worse and I seemed to have one long bowel attack for weeks in September.  It was worse than the stupid cough.

Sometimes, not often, I get tickles inside that are so intense that all I can do is cough and it is very violent coughing and that can happen while I am asleep enough to wake me up.  I don't smoke in my sleep so I can't blame that as an irritant when it happens.  The post-antibiotic CT scan took place the beginning of September and  because I thought "no news must mean good news" and because an appointment was delayed due to my  bowel attack plus whatever else is going on that had me so sore and lifeless, I waited longer than necessary to get my results.  I think my glands are up in strange places as well as the usual places and I was feeling feverish.  I have complained of a low-grade fever all year on and off because that's what the chills and flushes at the same time feel like and when I had a working thermometer it showed a half  to one degree increase but not more than.  It was insignificant but I feel ill and that should count.  Anyway, I got my results of the second CT scan after seeing the rheumatologist where we still discussed the first, pre antibiotic scan.  She was concerned that I should be seeing a lung specialist and that it impacted on her assessment of my problems which she suggested may be some kind of vasculitis.  She showed me the lung scan with lots of "lights" on it and I thought "Crikey, if that was lung cancer, surely I'd feel worse than I do and surely I will die fast if that's what has taken over my lungs".  I didn't have all this chest pain like I do now...just a bit and the silly mid-back cyst pain and referring tingles.  It seemed to me that I got worse after the antibiotics ran out.  Although the cough, being productive, still feels insignificant and there is no sign of stained sputum.  But also on that report was a statement that I had a small pericardial effusion mainly on the right side.  Oh man, that's fluid around the heart!

Later when discussing it all with Dr Jo, she was still sticking by her "it could be anything" and I was supposed to wait now until I get to see a Dr Craig Wright, respiratory (and sleep) specialist who deals with both cancer and infections which they all probably do.  Anyway I asked Dr Jo what this pericardial effusion was there for and she said infection.  The radiologist's first pick was atypical infection and I sure feel like I have a fluey infection along with a viral sore throat that has flared up again...but I always have a sore throat.  As for the heart thing, I wasn't advised to do anything re investigating it specifically but if I was rich I would go get an Echo.  I told Jo that she did not seem particularly concerned as I walked out the door.

Obviously the doctor didn't think it was concerning so why should I be concerned?  I've thought that one thought over and over trying to placate any of my fears as they arose. You might say I have spent the whole year thinking that even though I feel like the whole year has been a battle, and that it does not seem likely that I will get back to the level of health that I felt before the decline last year, which was well before Christmas last year, it can't be that important or there would be some action. The cough waxes and wanes, the gland pain waxes and wanes, the gastroparesis improves or is manageable, the bowel was relatively well-behaved until it started going into knots recently and repeatedly but that was after the anti-biotics mentioned above.  The body-wide aching sort of squeezing pain got worse and pain relief was the concern of every day nearly. My legs and the brain fog came and went in relation to the times I took prednisolone until I started taking it full-time in June.  That autoimmune outcome seems quite independent of this cough and chest pain and it feels like I have a chronic infection but my opinions don't seem to count mainly because they are not even asked for.  I hoped the rheumatologist could sort out the lot but I have to wait until this lung nodule stuff receives a verdict and I fear that will mean invasive tests.  Beats me why they don't start treating for mycoplasma pneumonia since I have had it before and I surely have read so much about it remaining dormant and able to be reactivated as well as causing disseminated disease.  It seems like the easiest answer that fits the clinical facts.  In the meantime, I'm getting worse, despite deliberately sleeping as much as possible this week around the clock in an effort to make it easier for my immune system to try and beat this thing.

You should Google "Mycoplasma Infectious Diseases" and find

Kazuhiro Matsuda on Facebook

It seems to be another one of those areas where the average doctor has their head in the sand.  In the Lyme world though, Chlamydia pneumoniae seems to be more of a problem than Mycoplasma Pneumoniae.  And in our family, the only infectious clue is Mum with her evidence of TB in her lungs.  Anyway, I have another week of antibiotics because I am not getting better, in fact I am getting worse with the flu-like illness and I have indeed had heart pain which I think I will be able to recognise now as a small pericardial infusion and indeed it is unlike the other chest pains I am having but I only say that because it was on the CT scan report.  Before this I thought it may have been angina but I do get "stings" every now and then which is different again.  Anyway, something is causing pericarditis and I assume it is the same something that has invaded my lungs and making it go away with long-term antibiotics sounds like the easiest option out of this predicament.  But none of the doctors I know would prescribe them even as a trial.  I will ask for another week.

Le-vel's "Thrive" 3-step experiment.

This experiment on myself is for 2 days. I was given enough samples to be able to feel a difference I was told. Sometimes the positive effects are delayed I was told so I will update this post for as long as necessary to convince myself. Please check back by refreshing the page in order to get to see the updates as they are posted because I am not going to be writing a blog topic for each entry .

Thursday 14th September 2017

I've taken one of David's Thrive W supplements at 3:30pm just 1 tablet (thanks for the free sample, does anyone else want one? Comment below. Must log in to Google or Wordpress)

3:40pm feel heavy on the chest and a bit depressed by the truth (I can't keep other people happy)

later Thursday: just felt worse and worse until my pain killer kicked in after 9pm and then it was soon bed time. Disturbed night as usual Anyway, that was just step 1 which did not have any adverse effects so I will do it properly as instructed by the company tomorrow.

Friday 15th September

10:30am - had tablet, shake and patch is on.  I am still waking up in pain as usual, no pain killers taken yet.  Trying to delay just to see if this magic pill set does anything in the first half an hour remembering that the pill was taken over 20 mins ago.

10:50 heart racing I think - finger test says 108 bmp just sitting here not moving - like feeling anxious or anticipating something exiting but not a very nice feeling for me.

10:55 took my usual pain killer because I am still in pain more than I can enjoy the day with.

11:00 horrible gut cramps which is not unusual, worse on moving - average HR 109 according to Endomondo (sports app) with a wahoo tickr chest strap however I do feel like I am in autonomic overdrive and still tired at the same time.

11:20 HR 125 bpm, been moving around, doing a painful bowel movement followed by making soup a bit at a time and making coffee and sitting back down now - Avg HR for all that was 116 bpm which means I am already over my safe anaerobic threshold for my age (the objective way to predict pay back because it is measurable in numbers and promoted by "Pacing" courses.  Google "pacing with a heart-rate monitor" if you are interested.)

11:35 sitting since last post. Average HR 103 bpm but all my coughing puts it up higher each time. Gut cramps easing off some. It's a lovely day out there.

12:00 I got up, did a few things, chopped a carrot, blah blah, heart rate goes up understandably to a max of 129 bpm and then I sit down for a rest just typing or Internet stuff and get my heart rate back down again but not down enough to what I consider comfortable.  Might take a beta blocker if I can find them.  I guess my Targin is working by now.  Pain is tolerable.

12:15 I got dressed, that's a good sign!

1:23pm I am in a good mood now, body has settled into the day and the beta blocker has made my heart rate comfortable at 83 bpm standing.  Will be able to tackle getting the wheelie bins in much easier now.  Round one goes to the beta blocker Inderal/Deralin as far as putting a smile on my face counts. Bowel cramp has not changed, it is still on the verge of going into hyperdrive (labour) if I eat anything. I tried a few mouthfuls of carrot and celery out of the chicken bone soup that's how I know.

3:00pm I am still tired and haven't really woken up properly all day but that happens a lot, so I'd say "no change" noted from taking the "Thrive" so far. Sorry David. I'm hungry. HR = 86 bpm

4:10pm Having low gut pain intensify because I had to eat something before but it is dying down again now.  Can potter around today whereas yesterday I could not stay awake this many hours without having to go back to sleep so I am better than yesterday.  I do need a sleep now though. Lying still can stop the gut spasms too so I will get both wheelie bins and update this after my sleep.  It could be a while. HR sitting = 87bpm

6:10pm I really did not lie down until about 5pm but for the life of me, I couldn't get to sleep.  That is highly unusual because my eyes still feel like they are tired enough to fall asleep.  Lying there did help my gut at the time, but it is back to its sensitive self again now that I am up out of bed.  I had rather a nice sense of well-being while I was lying there.  It was a bit peculiar too, like I might accidentally break out in a smile while I am curled up all warm.  I'd say that may actually have been the "Thrive" in my system effecting my mood because with unexplained hot spots all over my lung scan I don't really have a reason to feel secure and warm and I only got that shocking news 2 days ago.  I'll blog about my lung scans some other time though. My heart rate is not bothering me.

8:45pm  I ran out of milk and decided to get the whole grocery order and I am back now with everything still in the car.  I got really dizzy and my body could not figure out if it was hot or cold and I can't say I enjoyed it but I wouldn't have even tried yesterday.  It is hard to know if I was going to have the energy to go had I not had the "Thrive" today but it still felt like my body was giving me warning signs to stop at once!!  That's as honest as I can get. I did not have a feeling of well-being while I was out.

11:00pm I am all vibrating inside and in too much pain now, bed I think.

Saturday 16th September
4:15am I didn't quite make it to bed, I feel asleep in the recliner and now I don't feel like going back to bed right away. Gut is feeling much better. By the time I was fed and watered my heart rate was back up to around 92 bpm which is way too high for just sitting and its a bit uncomfortable while the rest of my body thinks it should be restful and still sleepy.

6.00am Thrive  W Step 1 - 2 capsules. Gut insides are getting sorer the longer I have been awake but they are not cramping.  Heart rate 92 bpm and it shouldn't be that high for just sitting.  These are baseline figures for today before taking Thrive.  Fatigue level: as per usual.  Pain level before Targin: as per usual I think.  Bowel motion: Easier than yesterday. Could be a benefit from yesterday's "Thrive" because I have been having problems since starting the low-dose steroids and the problem seemed to be mounting despite drinking more water.

6:20am Steps 2 and 3.  Thrive W (W for women) Shake and a new transdermal patch.  HR 88bmp while sitting.

9:25am Up until now, there has been no indication in my heart rate that would suggest that the Thrive routine has caused an increase, dangerous or otherwise.  My heart rate is being monitored consistently and my heart rate is approximately the same - between 86 or 93 bpm when sitting at the computer screen, depending upon my cough which is pretty darn annoying and energy-consuming. I am not saying anything about my heart-rate other than that today I know for sure that the Le-vel Thrive 3-step routine is not making it any worse.  I did have some concern about the stimulants it contains but being a coffee drinker, I know I don't get over-stimulated by coffee otherwise I could not fall asleep so easily routinely.  I did have trouble having my nap yesterday though didn't I, as in, I could not fall asleep.  If it is anything like the cortisol/prednisolone, I'd soon get used to that.

I am still feeling very tired but I have the energy to meet my needs today so I will be able to potter around and do things like clothes washing and hanging out  and I still have not even taken a beta blocker.  My heart was a bit racey last night after going shopping but I don't see any indication that I have not recovered already from that.  The sleep I had seemed to fix that.  I usually end up needing a recovery day where I do nothing but feed myself and restrict my own movements.  I don't think today is going to be like that so perhaps I am seeing some improvement.  It is so hard to tell if it is the "Thrive" since I expected to be on the mend anyway from my latest relapse and getting back to the stage that I was celebrating from seeing the improvements from taking low-dose steroids consistently.  It has taken a month to get back there since getting and taking a couple of different antibiotics.  That's when I started going downhill again.  However in hindsight it could have been something I caught from the doctor's waiting room or office allowing the EBV to flare while my body was dealing with the sore throat thing as a distraction.  As usual my glands have been up and my gills have been cold. lol  I was still feeling feverish last night when I went out or after. I feel OK today so far but I won't be overdoing it.

I have been a bit wonky in the head, a bit wobbly on my feet today despite no energy problems.  And I always end up getting breathless if I keep walking around for long and that is just "normal" for me.  So I have not experienced any improvement in that department from taking "Thrive" so far.  In fact I feel like I need to have a sleep and catch up after not getting enough last night so toodles.

5.00pm I just woke up.  Oh dear, I've been asleep all day!

8:30pm Let's just say that I don't feel well.  My glands are up and I am in pain.  I did not escape the payback from going grocery shopping last night after all.  I wish I had ordered online instead.  Needless to say I am not thriving on "Thrive".