November Milo Photos

I think that is last months photo, short legs then

Burying a hunk of rissole

Catch up on Chronic Illness. Now they call it Multi-Systemic-Infectious-Disease.

In America, the powers that be (the CDC etc) are trying to change the name of Myalgic Encephalomyelitis(ME) to SEID which stands for Systemic Exertion Intolerance Disease. In the UK the PACE trial was found to be poor (or rather rigged) research but they will not officially retract their paper from The Lancet nor has the Lancet itself retracted/rejected it like they should have when it was first submitted for publishing. Anyway the the flaws have been exposed elsewhere but that knowledge is not likely to filter down to the general practitioners and specialists who continue to follow its so-called findings which advocated Graded exercise as a treatment for ME. If the authors and Lancet would admit fault publicly then such practices would stop. They need to stop because that sort of torture is continuing to cause suicides especially in those who are institutionalised. Here in Australia it is still called Chronic Fatigue Syndrome(CFS) and it does not rate much of a mention anywhere unless it is associated with what we now call "A Lyme-like Illness" instead of Lyme Disease. Can you believe that the Senate has called for submissions for an enquiry into Lyme-like disease in Australia. This time next year maybe I'll have some good news. Nothing much has changed for me when I look back and read May 2014's birthday blog. My teeth continue to crumble and crack and be repaired and I still hate wearing a plate mainly because of this darn Burning Mouth Syndrome which no-one knows how to treat. I don't wear it at home so I get caught without it too frequently. I'm in pain all the time you know. Has not ceased since I bought a whole body vibration machine with a credit card although the machine is long gone. I had a really bad time with that triggering fibromyalgia flares and then stiffness and more osteo-type pain which requires Celebrex and a restriction on how long I can sleep for before becoming so stiff that I can not move without impossible pain. It was then that I tried Endone from a friend and loved it because it helped so much that my mood changed to happiness. I asked Dr Jo for some and she said no. I asked Dr Norton for some and he said I can't now that Jo has said no, I'll send you to a pain specialist. That will be in February if I can even afford to go. I feel decidedly worse after walking any distance, even just from the chemist to the bakery and back or after dying or shampooing my hair and if I don't rest up accordingly after, I am likely to be in more pain and have more flu-like feelings, sorer glands, more pelvic pain and ofcourse sleepiness and slowness even with an elevated heart rate the next day. I still get mini-fevers, half a degree or so higher than my usually low (less than 97 degree) temperature. Lately, standing up for more than 5 minutes makes me feel wonky...so usually I sit right back down except when I am caught out the front talking to Flora who is usually talking to Miss Milo. It was bad enough turning 60 in Hervey Bay with Mum and Debbie (and the kids and grandkids)

In the motel at Hervey Bay

My last gourmet birthday mudcake

then finding out that both my blood glucose and blood pressure were too high when we got checked at temporary health screen stand. That led to taking Deralin and a diagnosis of Diabetes type 2 eventually. But I was still getting around back then in between a few recovery days. Everything I have done or rather taken in the form of supplements eg. to treat my MTFHR and COMT polymorphisms, seems to make me feel worse. Anyway I came home from Hervey Bay with itchy bites, so I thought. They became hives and spread eventually up my body. I still have the brown marks quite visible on my pale stomach skin. I blamed the Deralin after considering the mosquito/sandfly reactions of the past but after I insisted on an extended RAST panel that focussed on an area that had been uncovered as a food allergy group, I quit eating eggs and the hives went away almost immediately after months of trying everything to relieve the itch. The strange part is that the high blood pressure vanished even before that so I no longer needed the Deralin which I had blamed for the hives. I have not needed it since so I have not re-challenged with it but I assume it is safe and it sure is much easier to take than metoprolol which for some reason is fatiguing to me. I surely do not need that. No sooner as I had sorted out the hives and while mourning my beloved eggs (my gut likes them) and sugar hits (gut digests sugar easier than most things too), I started having major gut problems. The bowel attacks were back. Partial bowel obstructions and passing-out kinda pain...but I did not pass out so when I did actually go to Emergency one time, they just left me to rot. No pathogens were unearthed from the tests I had then including ones done by the doctor but I was passing blood by the end of one of the attacks. Oh, you have an internal hemorrhoid, no worries. But what was never looked at was my stomach transit times and I swear my stomach would stop working before each of these attacks. I have never felt so much nausea. Nausea so intense than once again I thought I may pass out. It was more a nausea pain because although I wanted to vomit, I never do. Never have...once I did for a few days...that was before all my gut problems started...but not since. Very weird. I am really sure I had gastroparesis in a way that I could recognise it as such this time and I do not want to have it like that again. I couldn't eat, didn't really want to, because my food would not go down. It seemed stupid to stuff more in. I started following the gastroparesis guidelines but ultimately just did what I have always known to do since I was in my 20's....go on a liquid diet. Very difficult when you are supposed to have quit sugar. I had no idea until then that there is no such thing as a sugar-free nutritional liquid. You have to have some sugar I was told. I gave up and had ensure and stuff that was loaded with sugar. Anyway, I got through it and it has happened to a lesser extent since then but I have been able to adjust my diet from my now usual, low carb, high fat, high protein diet. I was not losing any weight though and in my mind, that was the key in making this diabetes 2 go away. It looks like I have started losing weight now though. I have lost 5kg since September. Not only was I eating far less carb but I also had managed to suffer through the prolonged withdrawal associated with switching from Effexor (which I blame for causing the most weight gain) to Lovan (which I used to be on in the past). Everything I have done has been hard work, involved a lot of online research, taken a lot of will power, cost me more money than I was used to spending on food etc. I am glad something is paying off. It has also involved going against the standard advice for diabetes. Yeah I went to a diabetes dietician but her diet did not go anywhere near far enough into cutting carbohydrates (my favorite food). Even low GI carbs were putting up my blood sugar too high. I had a tool to prove it and I used it well. Now I don't bother as much. The safest thing for me to do would be to eat meat and drink water but I'm not that pedantic about it. I'm sorry to say that I have taken up artifical sweeteners in soft drink. I just had to have something that tasted sweet. Never ever wanted that stuff in my body and managed to avoid it for 60 years but my diet ginger beer is an important part of my staying sane. Too much self-denial is bad for the soul. I felt very sorry for myself initially. Diabetes sucks but over it I have some control unlike all the other things I have suffered from since getting glandular fever when I was 16. Actually, I do have more control over the rest in a small way compared to back when I was listening to the masses because I no longer push myself to soldier on (unless it has something to do with my grand kids). It seems to be the worst thing you can do for things like fibromyalgia, ME, CFS, and vector-borne infections that have become chronic. Listen to your body. It cries. Be as nice to it as you would have been to anyone else who you were wanting to help. You are not going to tell that sick friend of yours to flog themselves so don't do it to yourself.

Overnight with Mike Williams Sunday July 19, 2015

Sharon Whiteman - President of the Lyme Disease Association of Australia

Jan's daughter got married yesterday

Amiee Lutzke and Darren's wedding vows.

Posted by Jacyn Colefax on Sunday, November 8, 2015

I have a dog

My baby

I've now got Diabetes

Yep, I've now got Diabetes type 2.  I blame the Effexor.  I tried to lose weight.  I gave up starchy foods.

My life will never be the same.  I have to prick myself to take blood sugar readings and I am supposed to eat the diet recommended by Diabetes Australia and all Diabetes trained dieticians.

I have been trialing a very low carb diet but I have not been able to quit added sugar in the form of biscuits, lollies and chocolate.  I cut out sugar in my coffee (and tea).  I've trialled a few 'diet' soft drinks and I have met a bent lancet dud and the conflict of requirements between a diabetes diet and a  either a liquid or low-fibre diet for an ailing gut.  My salvation has been going full-fat and my loss has been in the form of an allergy to egg white.    It too was a safe food for my gut but it eventually caused 2 months worth of hives.

Now, we wonder if the Crohn's disease is coming back and I have also had  the added misery of what feels like a paralysed stomach.  I've been misdiagnosed, more or less abused at the Caloundra Hospital and suffered a lot of intense 10/10 pain, intense 10/10 nausea and presyncope.

I had my 60th birthday in Hervey Bay with Mum, Debbie and the boys.  It was a big deal and it was a good thing to do.  I met Brett's new lady Kerry and her kids! I had not seen Cohen for so long, it was great to catch up with him even though his behaviour especially at school leaved a lot to be desired.  He's even been expelled.

I wasn't feeling brilliant on my birthday but we had spent a lot of my energy doing holiday things already.  I could still go out for tea.  Tea was Thai at Thai Lime Smile or some such name with Mum and Debbie after being very indecisive about what and where we wanted to eat. (as usual it takes a lot more energy than it should getting in and out of cars checking out the different places). Scott and Connor had mud cake at our motel but we had our formal get togethers before Brett had to go back to work ie.  over the weekend.  It had rained a bit and that was the reason Rob did not turn up  I assumed.  He didn't even say why.  He had been trying to get his foot in the door on this family holiday for a long time but when it came to the crunch it was not worth the effort not that I had encouraged it, I just had agreed to lunch with him on that day only.  I would not have driven all the way to Hervey Bay either but he always says things are for certain when they are not.  (He wasn't at my next birthday either - it was raining then too and this time he had to drive from Tewantin to the Caloundra RSL.)  I thought we had long since broken this need for him to be in my presence on 27th April every year.  It had not been practiced anyway.  Still hasn't been. Although he seems to threaten me with his presence anyway?  Not sure what it is all about.  I had just wanted it to be a family holiday. It was and I was grateful for it because my health had been going down the tubes and I was beginning to wonder if it would get the final say for my 60th but it didn't.  By the time I was 61 it was even harder to pull off.

Anyway it was while shopping at Hervey Bay in one of the complexes that Mum talked Debbie and I into getting a free health check on offer.  Debbie was fine but my blood pressure was too high and my blood sugar was 14.  All the investigations started when I got back to Caloundra and months later it was decided I was diabetic type 2 after several tests including the glucose tolerance test that I took my stretcher to so I could lie down for the couple of hours.  Lady at pathology thought it was a great idea me snoozing away the time.

I should have holiday photos in this post but if they don't end up here, check Facebook.

The latest from AHPRA on the treatment of Lyme Disease in Queensland

The latest from AHPRA on the treatment of Lyme Disease in Queensland as it appeared on Bare Bones Medicine Co's Facebook page May 5th 2014:

The Medical Board of Australia has made a ruling in respect to the diagnosis and treatment of Lyme Disease patients in Queensland.
The following information must now be taken into consideration when forming an opinion on your diagnosis of Lyme Disease.
• Lyme Disease includes any illness caused by an organism known as Borrelia burgdorferi (including any strains of that organism, namely Borrelia garinii, Borrelia afzelli and Borrelia burgdorferi (stricto senso))
• Your practitioner must not diagnose and treat Lyme Disease without having obtained a positive diagnosis of Lyme Disease from a laboratory accredited by National Association of Testing Authorities (NATA) using Centre for Disease and Control (CDC) criteria.
• Your practitioner must not treat any patient for Lyme Disease with intravenous antibiotics without having referred you to an Infectious Disease Specialist (IDS) for the development of a written treatment plan. The IDS is to be a Specialist approved by the Medical Board for that purpose. It is only then that your Practitioner may treat you for Lyme Disease.

Any other infection that you may have tested positive to or have been clinically diagnosed with is not considered to be Lyme Disease. Your treatment with your current Practitioner may therefore continue.

Second Crash and birthday photos.

I took things into my own hands when I crashed over Easter.  I started taking the last of the Zinnat I had.  I thought it most likely my "illness" was from a tooth infection/extraction.  I did improve by not doing anything and not going anywhere so that I was OK by my birthday.  Before I had my first crash I had been to an INXS tribute at the RSL with Jan, Jeff, Meshelle, Mandy, Dean and Mandy's brother Dale.  It was there that I marvelled at how great it was to be able to dance and go out at night again.  It was a first since the illness feeling had left last year allowing me to be relatively active without experiencing a crash.  The way things are going it may be the last dance I will have had for a while.

Trying NOT to smile - minus incisors

I went to the RSL again for my birthday but it was't at night time but for lunch with Jan, Lacie and Sue.  I was hoping to see Marina during a break from her poker tournament but she did not show.  Marina and I have not been out anywhere together in the 3 years or so that she has been living opposite the RSL in public housing.  Originally she said she would die there but she is moving to Ballarat in Victoria so it is not like there is much opportunity to catch up with her.  Her gear leaves Caloundra on 24th May.

I wore my Xmas present from Debbie for my birthday

 I am still taking the Zinnat and I will stop in a couple of days which will make it a total of 2 weeks.  I have crashed again since going to the pool on Friday.  I could feel it the moment I stepped out of the water.  I had done too much.  It also seems like these crashes have nothing to do with a tooth infection or else the antibiotics would have prevented this crash.  I won't be self-prescribing any more.

Fluffing up my wet hair NOT blocking my ears

I'm back to the problem I have always had in describing the symptoms that I associate with an infection of some sort.....a chronic infection.  For me that is sore, stiff base of neck; body pulsing feeling like heart is labouring when not even doing anything; a different sort of body-wide aching; internal buzzing feeling; low gut or pelvic pain; sore eyes; weakness; the kind of dizziness that I also associate with SSRI withdrawal; and getting puffed out sooner. I could get a whole lot worse than this but I am finding this too much deal with right now.

All of a sudden I have to consider my activity levels again and begin cancelling appointments (namely the physio tomorrow) and be unreliable again.  I can't count on myself getting there or being there if I listen to my body and if I ignore the warning signs for the sake of something important, I will once again pay a big price.  I don't know whether I can do this all on my own again.  I don't know how I did it before. What will I do, go back to Dr Andrew and beg for Bicillin injections?  How long can one person stay on antibiotics?  Is there going to be a point where they stop working anyway?  I was starting to go backwards on the Zinnat. Should I have "sold" my scooter?

End of Treatment for Lyme Disease and Co-infections

I had been complaining that physically I felt like I was going backward even before I stopped taking my last antibiotic - Zinnat.  I took a month of Ciprofloxican which treats Bartonella and Babesia when I came back from my three-week visit to Rosebud.  I had my final appointment with Dr Andrew on April 4th and stopped taking Zinnat then and there.  It was not helping me get any better but it may have delayed me going backwards faster.  I felt no effect from the Cipro.

Dr Andrew agreed we had exhausted the supply of antibiotics on the PBS.  And he was not able to prescribe for Lyme anyway.  I wanted to stop the antibiotics too.  However I have a feeling that had the Government not put a ban on him treating Lyme kinda stuff, then he would not have agreed to me stopping.  I have been feeling worse already since stopping but there is a complicating factor - an abscessed root canal treated tooth.  It abscessed while I was on the Zinnat and later again on the Cipro.  It tunnelled through my gum to the exterior forming a lump above the tooth several times. It used to go up and down.  If that channel had got blocked I would have been in a lot of pain but what pain I had was totally bearable which is why I kept postponing its removal giving priority to several breaks on other teeth between December and now.  I probably would have given priority to the right incisor (which had broken off at the gum line) at my latest emergency dental appointment had the dentist not made up his mind for me and took the left incisor out.  He said the infection may explain the extra fatigue I have been feeling.  Now I look terrible.  It is a big loss to have to say goodbye to both incisors and it does not help the depression I still have.  I have been depressed and anxious for 12 months.  Life has not been fun even when I had my health.  It makes no sense at all.

Don't ask me to smile

As the tooth extraction site heals I would like to say I am feeling an improvement with my health but 4 days later I can't say I do.  It is Easter Sunday and all I want to do is go and lie down instead of interacting with Scott and Connor.  I've been so bored living alone and now that I have company I am having to worry about the work that it involves like cooking tea and the effect it may have on me in terms of post-exertional malaise (PEM).  I feel sort of dizzy.  I have had that internal vibration feeling after going to the hydro pool to exercise my knee.  I have been paying the price of doing things again for the first time for a year or more.  It is scary to think it all could come back now that I am not taking antibiotics.  I can only hope that the extra stress on my system with this abscess is the explanation for the PEM.

Here are some Easter photos.

Christmas in the Bay

The Christmas Eve Cocktails were a disaster.  B's attempt wasn't much better.  He shook up soft drink! Exploded everywhere.

Hurley is a cutie but he is not toilet trained still.  Hurley barked all through Christmas because P's Nana Patricia brought along her dog.  Hurley must have been asserting his ownership of the Domain (the name of the gated community).

Christmas with Connor

That's Connor sorted.  He seemed to like the helicopter.  They are very fragile though.

I told him that the next present from Auntie D and GrandNan wasn't very exiting but he disagreed.  He loved getting a $50 note.  He wanted to buy a computer game with it so S took him to the shops and then home back to his other Nana's place where A is living too.

Roger came and took the car back and my life was arranged for me by that time.  I've been told that the boys will be going to Bev's birthday in Kin Kin on Saturday and so it seems I am staying in HB till Saturday when we will all leave.  Won't Paige be glad.

S did not like the shoes I bought him and does not think he will wear them.

My LLMD has had very restrictive conditions placed on his Australian registration

This was posted on the Bare Bones Medicine Co. Facebook page on December 20th:

ANNOUNCEMENT
As of late this afternoon, the following conditions have been placed upon Dr Ladhams by the Medical Board.
He is not to diagnose or treat Lyme disease in Australia as it has not been proven to exist here.
He is not to utilise PICC lines.
A diagnosis of Lyme may only be made by an Infectious Disease Specialist who is a FRACP.
No treatments must be used that will cause a Herxheimer Reaction in any patient.
For full details please refer to AHPRA attached.
Our sincerest and heaviest apologies to our dear patients and potential patients for this terrible news. The Regulators have decided that treating Lyme is dangerous and poses serious risk to patients. We must respect the wishes of the Board.
This is a very sad day for Lyme patients in Australia.

Registration Details

I have my next appointment in March.  I got it into my head that I was finishing treatment after the Rifampicin but that was not to be.  I nevertheless decided that I would do no more Bicillin injections so at my last appointment I was prescribed oral Zinnat (cefuroxime) instead to keep me in a holding pattern until I am ready to start on the Babesia treatment (namely 28 days of Ciprofloxacin and a magnesium supplement).  I will be fitting in a Christmas trip to Hervey Bay and trip to Rosebud before I plan on starting the Babesia treatment. I love not having to have the IM injections.

I finished the Rifampicin a couple of weeks earlier than my last appointment on 29th November and I got considerable relief from the anxiety within 24 hours.  It took another few weeks before I settled down further.

My latest regime also includes Fluconazole twice a week and Nilstat every day.  The Fluconazole can target Lyme cysts and Candida and the Nilstat is for Candida.  I have had far less bloating and gut pains since I have been taking Nilstat which is a long time now and my relief has been total for prolonged episodes.

In March Dr L can still treat me and others for fibromyalgia etc if nothing has changed by then.  I am one of the lucky ones who has my treatment mapped out for a few more months but I feel for all those who are probably panicking about what will happen to them.  Those who were being treated intravenously have my sympathy.