Friday, May 04, 2018

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.

Sunday, February 04, 2018

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.

Wednesday, January 31, 2018

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.

Monday, October 02, 2017

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.

Friday, September 15, 2017

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".

Friday, September 01, 2017

The pain no-one wants to see

It's probably a good idea not to look at my video but there is a part of me that wants you to know how bad it has been. All these years, since my first child it's been happening and there are times I don't think I am going to make it through alive. But I have. The cramps are so violent that I am left bruised inside and sore for several more days even if it does not flare up again after eating. But once it is over properly, it does not usually happen more than once a month. Just as well, it takes me days to get over. Please do not share this video.

Saturday, August 19, 2017

Heart-rate Variability: What it means as a measure of autonomic nervous system health

I used to blog about heart-rate monitoring as a pacing tool in ME/CFS about five years ago on this blog but the newer devices also monitor heart-rate variability so I wanted to know more about it.  The following is a Note published by one of my Facebook Friends.  Unlike the timeline posts, Notes are easily saved and readily accessible via a menu option that people rarely check. This one was Posted by Karyn Crimmin on Tuesday, June 7, 2016

Heart Rate Variability (HRV) – An Under-Utilised ME/CFS Management Tool

Reposted with permission from Karyn

About Me
Although I have a health background (in Optometry), I have no experience whatsoever in exercise science. I'm an ordinary patient with diagnoses of Myalgic Encephalomyelitis (ME), Postural Orthostatic Intolerance (POTS), Neurally Mediated Hypotension (NMH), Mast Cell Activation Syndrome (MCAS) and autoimmune disease. Among others!

This blog is about my experience with HRV tracking and what I have learned along the way. I can’t cover all there is to know about HRV, but hopefully it will be sufficient to demonstrate what HRV tracking has to offer, and how to get started.

I've been bedridden for 7 years and I struggle to read much of anything, or to do significant amounts of research. My point is this: HRV tracking looks daunting at first but it's very doable, and in my experience it has a lot to offer the ME/CFS patient. If I can do it anyone can. My advice is to just dip your toe in and learn as you go along.

What is Heart Rate Variability (HRV)?
Heart Rate Variability (HRV) is the term used to describe moment-to-moment variations in our heart rate. It does not refer to the variations of heart rate that occur with activity, illness or other factors. HRV variation is much more subtle and transitory. When we breathe in our heart rate speeds up slightly and when we breathe out our heart rate slows down slightly.

This variation is normal. In fact a higher variation is healthier than a lower variation, and is an indication of a healthy autonomic nervous system, and good stress resilience. Low HRV is associated with increased Sympathetic (fight/flight) Nervous System (SNS) activity, and/or decreased Parasympathetic (rest/digest) Nervous System (PNS) activity, and is associated with chronic inflammatory disease, cardiovascular disease, stroke, diabetes, and indeed ME/CFS.

 The Parasympathetic Nervous System’s effect on the heart occurs primarily during expiration, and this is what causes slowing of the heart rate as we breathe out. This effect makes HRV a convenient measure of the function of the autonomic nervous system.

HRV measurements are often used by athletes to determine when they can train harder, and when they need to ease back. And it seems to me that ME/CFS patients can use their measurements in a similar way.

How Can HRV Tracking Help ME/CFS Patients?

Because many studies suggest that autonomic nervous system problems are present in ME/CFS, having a way of measuring and tracking the function of our ANS, via HRV, on a day to day basis can be a useful adjunct to our management of illness. HRV tracking is not a treatment though – it is a management tool that can help you manage your illness more effectively. It can be used to track your day to day progress and long term trends, determine a sustainable level of activity and pace effectively, objectively assess the impact of some treatments, and demonstrate to your Doctor or others how you're progressing. It also helps me make sense of what is happening in my body and what various symptoms or symptom clusters mean.

All of that is amazingly helpful, but the most surprising benefit I found from HRV tracking has been being able to objectively demonstrate ‘crashes’ to others. For me, qualitative descriptions of how you’re feeling from day to day always feel whingey. And – let’s face it - descriptors cannot adequately convey how you feel to people who have no direct experience of our illnesses. However, I’ve found that when you can show graphs of your heart numbers, or can simply say, ‘My heart numbers have plummeted today’, people actually get it! They really do. My husband now asks me almost every day how my numbers are – and it makes sense to him. That makes HRV an amazing tool as far as I am concerned!  

HRV tracking is different from heart rate (HR) tracking. If you are unaware of the benefits of pacing using a heart rate monitor, I’d recommend that you look into that as well. HR tracking helps you pace, and stay within your anaerobic threshold throughout the day. It is an important tool for monitoring activity as it happens. HRV on the other hand tracks your recovery status, long term trends, sympathetic/parasympathetic nervous system balance, and helps you plan your day. Wrist band monitors like FitBit and Mio Alpha are fine for HR tracking, but you need a good chest strap monitor for accurate HRV monitoring. There tends to be an inverse relationship between HR and HRV - when your HR is up your HRV will tend to be down - so to some extent, morning resting heart rate can be used in a similar way to HRV, but it is a more crude measure, and will miss a lot of the subtleties that HRV readings will pick up.

HRV Terminology There is a lot of (daunting) terminology that comes with tracking HRV. Don’t let that put you off. My advice would be to just start tracking, and with a little experience, it will all begin making sense. There are many more, but the most basic terms that a beginner should get to know are:

  • HRV (Heart Rate Variability) - refers to the variation in time intervals between heart beats. As noted earlier our heart rate should be fluctuating constantly and that is reflected in changing time intervals between your heart beats. Low HRV indicates a lack of autonomic nervous system flexibility. Instead of a continually fluctuating heart rate (as the PNS rhythmically increases and decreases its effect on the heart), the heart rate is constant and inflexible.

  • HF (High Frequency): relates to the level of parasympathetic (vagal nerve) activity – this is the body’s rest and digest system. HF decreases with stress, anxiety and emotional strain.

  • LF (Low Frequency): was initially believed to relate to the level of sympathetic activity – the body’s fight/flight system – but is now known to reflect both sympathetic and parasympathetic activity.

  • LF/HF (Low Frequency / High Frequency ratio) is an indicator of balance between the sympathetic and parasympathetic systems. A higher number is believed to indicate higher sympathetic nervous system activation in comparison to parasympathetic. The SweetBeat app claims that a healthy well-balanced result is approx. 1.5:1.

Apps and Hardware

HRV is calculated using various algorithms, which vary between apps. Therefore HRV results obtained using one app are not directly comparable to those measured with a different app. Comparisons can only be made between readings using the same app, in the same conditions. Usually apps will use algorithms which give HRV on a 1 – 100 scale. HRV can be measured most easily using inexpensive and readily available apps, in combination with a good quality (chest strap type) heart rate sensor. HRV measurement is very sensitive to error – so it’s important to make sure you have a good quality sensor and app. Unfortunately strapless optical sensors (such as Mio Alpha) or camera flashes do not (in my experience) give the accuracy required to get reliable HRV measurements.

To accurately measure HRV, a chest strap sensor is needed. The Polar H7 seems to be considered the gold standard as far as sensors go - I started with it but had endless problems. Eventually I worked out that it was my small frame size that was the problem. So if you are at the lower end of their strap’s recommended size range I’d steer clear of it. I switched to the Wahoo Tickr and I love it. It has a centre front clasp which also makes it much easier for someone with ME/CFS to put on! However there are plenty of other sensors that will do the job well. Just be sure to check compatibility with whatever apps you want to try. Cost is reasonably affordable – the Wahoo Tickr RRP is $89.99AU, the Polar H7 is around $119AU.  


I'd recommend trying a variety of apps - because there are significant differences between them. Some apps will give you specific results for factors like LF, HF etc. Others give fewer specific results, but do the interpretation for you. (Keep in mind any interpretation is geared towards athletes wanting to know how hard they can train on a particular day). Some are nicer to use, or more intuitive, or allow recording of other variables like sleep and exercise. Some examples of available HRV apps: SweetBeat, Elite HRV, ithlete, Bioforce, and HRV4training. There are apps available for both iOS (iPhone) and Android devices. The app I personally prefer is SweetBeat. As well as HRV numbers, it also provides HF, LF and LF/HF numerical results, and it correlates extremely well with my day to day perceived energy. Elite is also a very nice app. I particularly like the weekly and monthly averages it provides, but it does not give specific HF and LF numbers, only a sympathetic-parasympathetic scale (though I believe HF and LF numbers may be coming in the future).

SweetBeat: the ‘geek screen’ gives actual numerical results. This LF/HF result of 10.5 shows sympathetic dominance

Elite HRV: gives sympathetic/parasympathetic balance on a scale
This result with the pointer in green zone in centre of scale indicates balanced sympathetic/parasympathetic systems (compared to previous results). It also gives a ‘readiness’ number (10) indicating good ability to exercise that day. However the readiness number can lead you astray at times, and I have found it more useful to make my own interpretation of readiness from the actual HRV scores.

Ithlete summary screen includes variables such as sleep, fatigue, stress & diet
I also recommend purchasing a separate graphing app. I use LogsAll, and most of the graphs I will show in these blogs will be from that app. It is exceptionally simple to use, costs only a few dollars, and for me, has been worth its weight in gold. It can produce trend lines, and statistics such as averages and standard deviations. I enter all my daily HRV data into LogsAll each morning, and that enables me to do a lot more with my data. (More about that in my next blog).
Taking Measurements
HRV is a tool for determining your capacity for exercise/activity/stress resilience from day to day, or alternatively your need for increased rest, and all that is required is a 5 minute recording each morning when you wake.

To validly compare readings from different days, they should be recorded at about the same time of day, under the same conditions. Your HRV recordings should be done on waking – preferably before you do anything else in the morning e.g. drinking fluid, going to the bathroom, conversation, brain activity {not that too much of that happens in my brain in the mornings }

 Body position is important. Readings can be taken lying, sitting, or standing – but you must stick to the same body posture for all your waking readings so that you have valid comparisons from day to day. For ME/CFS patients, being upright can (sometimes dramatically) increase heart rate, and cause the SNS to kick in, so I always do supine (lying) readings. There is an argument to be made for seated or standing readings if you are not too ill – as that puts your body under a little stress, and gives some indication of how the body is coping with that stress.

HF and LF are very influenced by breathing rate, so I like to use a breathing pacer (which most apps provide) in order to eliminate breathing rate as a factor in my results. However there is some difference of opinion on this. I have tried both paced and un-paced methods, and found little difference other than a higher HRV result with paced breathing. The important thing is to choose one method and stick with it.

LogsAll graph showing HRV results with paced breathing (blue line) vs un-paced (red line)

Although short readings (of at least 1 minute) can be used reasonably successfully for HRV readings, a recording of 5 minutes is needed to reliably assess LF and HF components. Therefore, if you want the benefit of readings for LF and HF as well as HRV, I would recommend a 5 minute reading. But if you are only interested in tracking HRV, 1 – 3 minute readings are fine.

Aside from all that, it’s simply a matter of putting on your sensor, starting up your app, and lying quietly for 5 minutes while the measurements are taken. Then save your readings, enter results into LogsAll (if using), and you’re done!

Interpreting Results
Seeing the numbers and graphs will make everything more real for you. And to be honest it was a bit of a shock for me to see how low my numbers were. But it was also validating for me to see that how I feel each day physically is reflected in these objective numbers.

When I do too much I see a drop in my HRV the next morning. If I continue to do too much, or try to push through, a downward trend takes shape. These downward trends should not be ignored – it is a hole which becomes more and more difficult to dig yourself out of.

 Start recording your data and see it take shape, and begin to make sense, before your very eyes.

Elite HRV trends screen: The blue line is HRV and shows a significant dip (crash) in late April. The crash is also evident in the readiness (green, yellow and red) bars

LogsAll graph of SweetBeat HRV daily scores showing a deep crash in Nov 2015. When you show someone objective heart measurement data like this, they cannot help but understand the devastating effects of a crash

As well as levels of activity, you will need to consider other factors that can cause drops in HRV e.g. sleep, diet, medications, and stress. I find the HRV apps a bit limited in their ability to clearly identify the influence of these types of contributing factors. For me this is where LogsAll app comes in to its own.

Legs come, legs go

My legs stop working unless I take 5mg Prednisolone a day. The problem was that I was only prescribed tablets for the "emergency" treatment of 1 or 2 weeks after which I would stop taking the tablet. On the third cycle of that happening this year, I become so loathe at the idea of losing my legs again that I didn't stop taking them. That was June sometime. It took a little while but by this month I was ready to tackle all the medical appointments that I had let accumulate since before Christmas last year. I WON'T DELIBERATELY PUSH MYSELF INTO RELAPSE any more when I know for sure that it is going to happen. It's not hard to tell when it is going to happen for sure and going out for any reason for even tiny amounts of time has been enough to cause payback all year and I don't see why I should have to line up for it especially if these are my last days....relatively speaking. I'm not inclined to do it for anyone else any more either and I think that is the point when friendships reveal themselves as "fair weather" friendships. People question my love for them possibly because I am not prepared to pay the price of putting up with discomfort which to my body is akin to stress. It could be just the cold wind that my body hates or it could be the energy of "talking" or the light intensity or the fact that I have to wear clothes of a certain calibre. Ban the bra! I say. When I take the prednisolone I feel more alive and more able to distract myself from environmental stress and yeah, my legs work and I can think more clearly and feel more in control because of it. I have not had a nice time of trying to imagine myself any more sick than I already am so now the pressure is off and I can enjoy myself within my limitations. I can potter around the house slowly getting things organised and I can make it to appointments with far less dread. I've had my hearing aid checked and adjusted and I changed providers for the better. I had my eyes checked for everything in a particular effort to find a reason for the "eye headaches" but there was none. I had a home sleep study which I have not got the results of yet and a lung CT which I have got the results of in a watered-down fashion - the nodule has changed!

Now that the news has digested I have more questions but on the day I was just as keen to secure a long-term supply of prednisolone (before discussing the lung lumps)  so that I could take it daily and keep my legs working which I did. She agreed to daily.  She obviously does not want me to lose my walking again either but the only thing she said was that we will try to lower the dose as soon as possible. But now I want to know if taking steroids makes lung nodules grow? All the steroid sprays this year and it grows and none last year and it doesn't? I have not researched this so it is just my thoughts. If I think about it from another angle, I could ask, what is likely to grow faster in the presence of steroids? The answer to that one is fungus. Fungus has been on my mind since the antibiotics seemed to trigger that familiar itch as well as the most worrisome burning mouth I have had all year. It was so intense.

Living my life is kinder to me when I take both the Targin pain killers and now the low-dose steroids as well. I spend too much time feeling ill, and in pain even with these bandaids in my opinion and I do have trouble with side effects, although fewer now that my body is getting a consistent dose. I do wonder how long it will last as being something I am grateful for. Back in my high-dose steroid days (the Crohn's days) the benefit seemed to wear off over time (years). And right now the benefit does not feel as good as it did because I can still get that lead legs feeling that I once used to ignore. However rather than "poop-out", it could be the fact that I have been taking both Amoxycillin and Clarithromycin antibiotics because there is a chance that the lung nodule change is just the result of an infection. But her prescription was only for a week and that seems such a short time to try and rid me of an infection that has been causing lung-snoring noises, sinus problems and a  cough to clear the mucus all year. I'd like it to prove that it is not asthma or COPD as she diagnosed already this year and it is a flare up of say mycoplasma pneumonia (a past infection of mine) by getting better while I am on the antibiotics, but I feel terrible while taking these antibiotics. I've actually finished taking them but I still feel bad.  I was feeling so much better on a regular dose of steroid alone, but I wouldn't even know I am taking an energy-giving steroid right now because I feel yuk and "coma sleep" kind of tired again and if anything, it seems to have stirred up the coughing and lung rattles and mucus squeak sounds even more. I wonder if any of that got picked up on in the sleep study? The extra sore throat I have would not have been noticed by anyone because no-one has actually asked me about my symptoms. I've also been feeling feverish again and I've complained of mini-fevers coming and going all year too.  Needless to say, I hate antibiotic treatments.......even if they work long term to reduce an unproven bug load (which they did in 2012).  But this little one week application won't even do that. My gut is now trying to pay me back with my stomach not letting my food go down.  I am taking a couple of different kinds of probiotics and prebiotics in an attempt to avoid candida and thrush but that has not been something I can count on working.

Anyway, it is starting to sound more like lung cancer as I write about coughing and squeaking and even fevers so I think I will stop writing. It feels like I've been threatened with lung cancer all my smoking life and even when I stopped for 2 years the medical people still treated me like a smoker so it is sort of like "you deserve cancer you idiot". It's nice to know I may get a chance to keep everyone happy in their illusion of life's predictability. The Lyme and CFS and fibromyalgia and crazy autoimmune markers and 100 symptoms (yes I've counted) will be forgotten about if I have cancer. That worries me.  My life and death is now for the purpose of validating all the promising research into multi-systemic chronic disease and to have lung cancer put down on my death certificate will ruin everything!!!!