Bad Day

UPDATE:  It was Chinese Customs not Australian Customs that returned the parcel.

I lost all my energy again today.  I cried again today.  I feel lost and alone and depressed by the stuff I read in the Facebook groups so I have been avoiding that too. 

It was tablet day which means the reflux has got worse again as it does every three days.  It is supposed to be every second day I take a tablet from now on so it is only going to get worse and I can't say I like the idea of it burning a hole in my stomach and oesophagus.  I'll find out on Monday if I am meant to put up with that.

Let's hope seeing S and hopefully Connor tomorrow will cheer me up.  It seems S has an eye appointment in Gympie on Monday so now I know the "why" of the trip.   He says he will arrive around lunch time now.

I have just found out that customs returned my nicotine juice because it was a liquid which is really bad news.  I have nearly run out of juice and was due to take my next wean in dose any day I thought.  Now I am really stuffed.  They will attempt to resend it but now I do not know what will happen.  It was legal to get nicotine juice for personal use when I started this quit smoking attempt.  Even if it gets here eventually it won't be in time.  It takes weeks.  This is the first time I have had any trouble.  I hope the laws have not changed.

Old Slides Scanned Recently

Today turned out to be pretty good. Pain levels have gone down, not feeling ill, and although my mood was slow to pick up at least I was not crying like yesterday. I let K come over for a cuppa because I guess the poor woman has been waiting in the wings for a long time.

Did I tell you that the boys are back on speaking terms?  I'm so glad.

2003 maybe

Let's party like it's 1999

1972

Tidal River - no date - Is that a nose guard?

Uncle Charlie?

Batehaven 1970

1970 Ballet Concert

S has made plans to come here on Saturday afternoon, bring Connor to do the X-mas tree and stay the night and then the two of them are heading up to Poppy's place on Sunday. I am looking forward to seeing both of them.

Mt Baw Baw 1964

Developed November 1965

1970

Flu and Fatigue Every Day

One good day, one bad day, one good I said but now they are all bad days again since putting up the dose of Minocycline. I've been sleeping a lot and taking too many pain killers. I don't like this one bit. Joints are still bad and I feel cut off from the world again. That makes a total of 2 days that I felt somewhat normal and able to be distracted from the pain for November to date. Not enough.

Dr Legend at Brisbane Lyme Protest at Qld Health

Friday 23/11/2012.

New Glasses and New Floor Coverings Coming

 A QBuild worker phoned the other day to ask if he could come and test my floor coverings' underlays for asbestos in preparation for new floor coverings being laid in my unit next year.  I can only assume that the man who did the inspection post painting, authorised it after I showed him where the painters' trestle legs had severely scratched the vinyl in the kitchen/dining room and cut the carpet in both bedrooms.  It will mean that the carpet offcut that I have had sitting on top of the bare concrete in the lounge room will also be replaced with properly fitted coverings so he said.  This is good news. The hotchpotch of colours will finally be eliminated here.  I will have to decide whether I want vinyl or carpet in the lounge room.  I am not sure if I have a choice about vinyl versus carpet in the dining room which I am using as a TV room.  Departmental carpet is usually that industrial-looking plain flat type.  I will have to think about colours.

I also have to get new glasses.  My prescription has significantly changed with my distance vision getting better and long-sightedness getting worse over the last couple of years.  It also explains why I have been preferring to walk around wearing no glasses or cheap sunnies with no prescription inside (during light-sensitive periods).  I have a lot of eye problems including blurriness but they have felt much clearer since I either stopped taking the Plaquenil or started taking the Minocycline.

The local Optometrist I see has state of the art equipment including a machine that takes an MRI of your eyes or retina which is included for free.  The glaucoma checks were still negative I am pleased to say but I have a tilted disc in the optic nerve that was picked up on the MRI.  Apparently that increases my chances of getting glaucoma and causes a restriction of blood flow to the eye especially if your body blood pressure is low in comparison to the eye pressure.  Blood flow is also impeded because it tends to cause a kink in the blood vessel.  All it really means to me is that I have to be checked yearly for glaucoma.

For the record, I have my best close vision without glasses at 80cm with my right eye and 60cm with my left eye.  One eye for the computer screen distance and one eye at keyboard distance.

I will be getting the sunglasses I ordered in a couple of weeks and regular glasses in the New Year so that I could use my Medibank Private Rebate both this year and next to help towards costs.  I've had to pick the plainest glasses in the shop to keep the price down since it is just another debt on my credit card.  I guess they will become my Christmas presents but I did have my eye on a laptop laid back bed table.  I'll skip that idea for now.  I've been called up several times by the hearing aid clinic but I have not been able to get there yet and I know I will want to upgrade to a remote so I will have to postpone that too.  It is damned hard trying to juggle all the things behind my ears without either my cyst or the cartilage in general getting sore so I hope the next pair of hearing aids are a lot smaller even if it means sacrificing the bluetooth function which I hardly use.

My gums are still infected too but they have improved over the last few days since I have been doing oil pulling with coconut oil.  It has been worth the effort.

I am finally gearing up for Christmas because I have been having a run of a good day then a bad day then a good day and so on.  I've bought something for Connor and Jan and I have decided to send money up for Cohen so B can buy something for him.  Let me know if you want B's address if you want to send direct to Cohen.  There is not much point going through me.  B told me last night that S and I should come up but it seems Roger and Bev will also be going up there for lunch despite the fact that St has asked B to come to her place.  It sounds a bit messy and we might not even get there so that is why I am still sending the money - bank transfer I mean.

I wish you would write a blog Zena that I can read - I never know as much about your life and Mum's as you know about mine.  What are you doing with all your free time?

Cute

This is going to be a wild ride

I still haven't been well enough to get out but this morning I thought I might be but I did my usual "having a shower and washing my hair" getting pooped check and did not pass so after I got dressed and ready I changed my mind and ended up staying at home.  Again. But at least I was looking a bit less dishevelled today until I had to slip into something more comfortable for the pregnant looking tummy that made its appearance.

I was hoping to get out and grab a few things just in case I reacted for days to my 2nd half of a Minocycline tablet.  I took my half a tablet at lunch time.  Then I went on to have a bowel attack which came on and went so fast that I feel OK again now.  If I am going to react like that then I had better stay at home after popping a pill.  I hope my body gets used to this medication after failing to tolerate the Plaquenil.  But it is going to be a wild ride and I have already been at the end of my rope with this suffering behind closed doors so many times already in the past two and a half weeks.  I'd dropped out of Jan's life and she got worried.

I am very pleased to say that the gut burning is easing off after waking up with it with the help of licorice root capsules, licorice tea and chamomile tea.  The licorice tea is also soothing to the burning mouth which is now tolerable if I choose the right food.

 

This photo was taken at Port Douglas during the recent solar eclipse.  Do you know who the man is in the photo?  It is my nephew Glen.  He just got married.  I have not seen him since he was a pre-schooler so I would not recognize him if it wasn't for Facebook. Definitely a memorable moment though.

B posted photos of his work place on Facebook too so now you know what he is making.  He likes it even better than the other Engineering works he left.

November Storms

Plaquenil makes me sick let's hope Minocycline is kinder

I just kept getting sicker and feeling more unwell on the Plaquenil. I put up the dose to make sure it was the Plaquenil and sure enough I got even worse. My joint pain was too much for any pain killers and I had just started itching again when I stopped it so hopefully I have averted the rash. I got the burning mouth again which does not look like it is going to go away for a while, have been more constipated and the very first side effect was the reflux and burning gut. I thought I could put up with that by increasing my Losec but it reached a miserable peak when I added Nilstat Oral to treat the mouth and stopped it again 24 hours later when my gut was burning even more even after I had stopped the Plaquenil. Terrible nights propped up in bed on pillows. Nevertheless my joints are now much improved but I don't feel well but it's different unwell now if that makes sense. On the Plaquenil it felt like my ankles were going to crack when I walked. Anyway the flare up was too much for me and I couldn't eat properly. I'll have to forgive myself for being old and too sick for too long to be able to take much of a herx but I don't have anyone to look after me and someone has to do the washing and cook the meals. Me.

 I've been really upset to have to quit on the very first medication prescribed and have worried about what the doctor will say when I go back. I lasted one week and 4 days. However, Mualla McManus (neuropharmacologist) of the Karl McManus Foundation prefers Plaquenil (for cyst busting) to be added 3 months after the Minocycline otherwise you can get very ill she said. She also said Minocycline was more anti-inflammatory. I am starting on the Minocycline today which is a close cousin to the Doxycycline I was complaining about on New Year 2011 however, this time the dose starts off low (half a 50mg tablet every three days for the first week) and I only need to build to tolerance level. Unfortunately Doxy caused constipation last time too. Let's hope the chia seeds, Aloe Vera juice and probiotics I was told to take help. Along with everything else I am trying. I am OK today in that regard.

 As an aside, I tried to get photos of the eclipse of the sun yesterday but it was too bright for the ipad or camera and I did not really have the energy to do much more than go click. The temperature dropped here about 0.3 degrees but we did not get a total eclipse here as you probably know. I remember it going dark and the birds going quiet in Melbourne when I was a child. Or did I dream it?

The Ballad of The Deer Tick written and performed by Dr. Richard Horowitz

Ballad of the deer tick by dr. Richard Horrowitz

Clyde came to my office one bright sunny day
He said doc I´m in an awful bad way
I´ve seen 19 docs and I´m almost dead
All they can tell me is it´s in my head
Doctor please, help me please?
I said Clyde can you tell me what you did in life
That caused you all this terrible strife
He said doc I was with my beautiful wife
In the woods one day enjoying life
We laid down on the ground and we fooled around
And before you knew it I was illness bound
From that day onward I´ve been going downhill
Can you give me a lotion or a potion or a magic pill?
Doctor, please, help me please

Chorus:
I´m gonna pick off a tick real quick before the devil gets within
It´d be crime for the Lyme to steal my mind
I sure could use it for a little more time
It hurts over here, it hurts over there
It hurts in places everywhere
It hurts in my fingers and it hurts in my toes
It hurts in places where nobody goes.

I said Clyde this is your lucky day
I know why you´re feeling in such a bad way
That night in the shower did you check to see
If there was anything attached to the back of your knee
Or anywhere else, or anywhere else (I think you know what I mean)
Did you notice a mite or a bite or a tick or a ring
Or any such unusual thing?
Did you shake or quake, get hot or cold
Before your illness really took hold?
Clyde looked at me with a tear in his eye
And let out one enormous sigh
He said doc I remember some unusual rash
On my nose and my toes and where nobody goes

Chorus

I said Clyde this is not: Chronic fatigue, fibromyalgia, Systemic lupus,
trigeminal neuralgia, Halitosis, Multiple Scleroris Or any hocus pocus diagnosis
It´s about time you got tested for Lyme
It´ll be wiser to check your ELISA
It´ll be easier to treat your Babesia
Once we will show your HMO the proof they need
The proof they need
Just pray it´s positive, you´ll be lucky indeed

Chorus

---

Dr Horowitz speaks about Lyme/Multi-Systemic Infectious Disease Syndrome (MSIDS) at the 23 minute mark in the video I have linked to.  It is really worth listening to.   At the end of the discussion with the panel Dr Horowitz recommends Saccharomyces as THE probiotic of choice to take to prevent C.diff which can be a consequence of antibiotic treatment.

One brand of Saccharomyces I have found is available here and you can get a $5 discount on your order at iherb by using my code RIZ901.  Their shipping fees are the best! Time for me to put in an order before Christmas and also buy some Burbur for detox.  You don't mind if I skip Xmas presents do you?

skidmorevideo on livestream.com. Broadcast Live Free

I take it back about faster crash recovery

I still have not recovered from going to the doctor this time last week.  I started Plaquenil the next day.  I said I was OK relatively speaking the next day post doctor trip but my main crash usually comes the day after that so now I don't really know why I have felt fluey achey with lots of joint pain too, including ankles that feel like they are cracking when I walk on them.  Not knowing why is the story of my life.  I've been looking up my Plaquenil records and cannot find anything consistent, I was on it and off it last year. I had itches, rashes, burning mouth and tongue and boil-like painful spots on my abdomen the first time I was on it after a month.  I quit the stuff but I went back on it even while I still had the itches, quit again then later in the year tried it again and didn't get the rashes.  I still had the burning mouth stuff then and all the thrush medications I was given at the time did not work but it eventually went away to a tolerable level.  I still get a tingly tip of my tongue. 

I've been battling constipation too and trying to detox with various things - lemon juice in water, milk thistle, coconut, grape juice, fibre, stopping my pain killers for several days etc.  I've had a lot of gut pain after eating until a couple of days ago when that seemed to settle mostly.  Everything just seems to be guesswork and the pain was too much. One day I cried emotionally and I don't usually do much crying unless I have sympathetic company and then it can bubble over.  All I know is that I am a mess except I have not had any dizzy stuff.  So it could have been worse.  The house is showing my neglect for a week.  I wasn't well before I went to the doctor so maybe it was all just too much forcing myself to go.

This morning I had to push myself to the dentist at 8:30am.  I chipped a bottom tooth and I was lucky enough to get one of the few remaining appointments before the dental scheme ends on December 1st.  There won't even be another dental scheme under the Enhanced Primary Care system until 2014 and not even the dentist (Francis) new what was happening in between in the public system. 

I had both middle bottom teeth reinforced with filling and she treated my inflamed gums up top which she said were pussy.  That hurt some despite having an injection (up my nose it felt like).  She removed a bit of an overhang where I normally get food caught - the same old place that gets inflamed all the time and gave me a bit of a scale and clean followed up with some desensitising gel.  That's it now.

Starting treatment for Lyme

NOTE: THIS POST HAS BEEN ADDED TO POST PUBLISHING

My gut problems stopped in time yesterday for me to make the hours drive to Noosaville and also because as usual he was running behind so I had an extra half an hour at home.  That clinched my decision to go especially since I don't mind driving and all I had to do was sit.  I was capable of sitting upright without feeling strain or heart racing from it but for the first half an hour I waited in the car reclining and snacking on nuts because it was past lunch time by then.  I carked it pretty early last night though, totally exhausted, but the sleep restored me enough to not be paying too much in terms of flare-up today.  And my gut is behaving today too.  I'm needing a sleep soon though.

I was surprised that the doctor did not want me on anything for my thyroid.  He said it was inflammation (thyroiditis) and he was more keen to start me on treatment for Lyme disease.  He said he bets both my blood and urine will come back positive for Borrelia.  He phoned for the results while I was there but they were not ready as I suspected and then he chatted to the staff for quite a while.  I could tell that he is passionate about the cause to bring Lyme disease into recognition and that he considers himself to be more on track than others who are treating Lyme too aggressively too soon.  Nevertheless I realise that all treatment protocols are controversial and both antibiotics prescribed to me are not without their side effects.  However, if twelve months of treatment is going to get me out of this terrible life I lead then I guess it will be worth it. It could be longer than 12 months and from what I read online, most people who are having success and stop treatment are relapsing.  Not everyone has success and some opt to go the herbal route.

I can't say I am not worried because I am really worried about herxheimer reactions when endotoxins are released and my history of gut problems with antibiotics in general.  It sounds like I will be complaining more about diarrhea than constipation when I start the second antibiotic.  Firstly I will be taking Plaquenil which I have been on before but I have not been on such a high dose before.  The instruction sheet explains how to build up gradually and acknowledges the eye problems and sun sensitivity.  I think that is why I stopped last time despite having eye problems before I even started like I have still now.  I may have gotten a rash too if that's when it was that I got a rash.  It's all a bit hazy now.  I have to report a rash if it happens, otherwise I will continue with the regime until I see him in a month.  I will be considering some multifocal sunglasses in the meantime.

UPDATE: I found my old posts about the rash and I did associate it with Plaquenil enough to stop taking it here

But then I started taking it again here

I think I kept taking it until July 2011.  It was prescribed by Dr Herd (local rheumatologist) for a possibly unknown autoimmune disorder but I did not have any long-term support from him. 

BACK TO THE PRESENT: I was hustled out the door before I could think to ask about the neurontin (an anti-epileptic used for pain) and whether doc thinks I should take it but I am quitting on the Endep except maybe on a one-off basis if I have bad problems with sleep.  I was losing my good days to being too dopey.  I also got more constipated and was putting on weight just in a few days.

Now that B is back in HB, I was thinking..... maybe X-mas up there.  X-mas is much more fun with kids around and Cohen won't be little much longer.  He is starting prep at school next year.  B may not like the idea and I know her family will want Cohen too.  I could well be too sick to do anything but lock myself in a dark house.

The dark house thing I did a couple of Summer's ago when my eyes were bad and I could not tolerate the heat.  I hate Summer up here.  I was pronounced low in vitamin D after that and then I got it back up with supplements because of the threat of osteoporosis and on advice by my current doctors.  I stopped taking vitamin D earlier this year when it was back up to 100 but now I am in the red for it being too high at 165.  I am also getting confused about the regular vitamin D test and the 1,25 D metabolite test.  Apparently lyme bacteria like an environment rich in vitamin D or maybe they cause it? Read the last sentence in the abstract I just linked to: "High levels of 1,25-D may result
when dysregulation of the VDR by bacterial ligands prevents the receptor from expressing enzymes necessary to keep 1,25-D in a normal range."  The doctor referred me to http://bacteriality.com/  I found a vitamin D calculator there and in reference to my 1,25-D it said "This very high value of 1,25-D shows significant VDR dysregulation, and is typically seen in people with extensive Th1 inflammation, often with cardiac or pulmonary involvement."

More on vitamin D and the vitamin D regulator (VDR) here.

All those doctors over the past couple of years who told me to get my vitamin D levels up got what they wanted.  Hmmp.  I did make quite an effort to do just that and eat so many of the foods on the list of vitamin D foods to avoid so that once again I feel like I am on some nightmarish merry-go-round.  I had just started eating black pudding again and I was really enjoying it and I have been having milk and fruit smoothies often fortified with whey protein.  I can't believe that even my humble fish oil tablets (which I do get benefit from every time I ache and get joint pains too badly (if I am not already consistently taking it daily) have all of a sudden become foods to avoid if I am assuming correctly that my doctor wants me to.  It was not a specific instruction - just the site reference and reference to the Marshall Protocol.  I've heard of all these things but I honestly thought it was taking things too far.  I was using LF dairy a lot specifically to get up my bone density readings (due again February 2013) and many on Lyme Protocols say to avoid it but it is very common to find anything with vitamin A in it to be fortified with vitamin D in USA and I guess it will become common place here too as the government start "educating people" about it with ads on the TV.  It seems like a conspiracy to keep the sickest people sick!!  If they don't check 1,25 D (metabolite) levels then a plain 25 D vitamin D test is useless.  That makes a lot of doctors useless because they follow the mainstream medical advice that seems to be controlled by greed at best.  OK, end of rant.  But what is left for me to eat now, just meat and vegetables that are low FODMAP?  I doubt my LF milk is fortified with vitamin D.  This is Australia and we are behind the times thank goodness.  But what about the sardines in the cupboard and the kelp noodles I specifically bought?

It seem I will be expected to be following some sort of detox program as well as taking probiotics, chia seed and aloe extract/juice for my antibiotic gut.  More money.  I can't afford Xmas this year.  I'm already spending money on buying better quality or starch-free or gluten-free foods, even organic when I can and other supplements etc and I am just about at my limit so something has to be given up.  I've heard that some of these antibiotics cost big bucks and I hope they are not something I will have to take on this protocol.  One last ditched effort before I quit on doctors so try and support me please.

Oh, I forgot to tell you B got the job and is starting today.  Good one.