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.