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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. k-AUS

    Cfs story on abc 24- Aussie TV

    The lady "Amity" has ME/CFS and lyme disease. This walking style is indicative of late stage neurological lyme disease. She chose to focus on the CFS/ME aspect of her illness to help gain more public awareness of ME. I'm part of a lyme group in Australia and Amity spoke openly about the need for...
  2. k-AUS

    Beaver gets Lymed. (Trimethoprim, Plaquenil?)

    @beaverfury Thats my puppy Koda, he is a Samoyed. It's his first birthday on Saturday. I'm on oral abx as well. Plaquenil - I just stopped Azith as it gave me diarrhoea. Will be trialling another abx soon. Just started ldn 4.5mg with no good or bad side effects. I was querying the IV abx...
  3. k-AUS

    Beaver gets Lymed. (Trimethoprim, Plaquenil?)

    Beaverfury, Are you on IV or oral antibiotics?
  4. k-AUS

    Lyme testing - in Australia

    Hi Art V I have been diagnosed by both Infectolab (Germany) and Australian Biologics as having Borellia and Chlamydia Pn. my daughter has too. I was told by my llmd that the tests in Aust were not sensitive enough yet to detect bartonella or babesia and that the Dr.'s tended to look at the...
  5. k-AUS

    Lyme testing - is there a Popular Lab?

    ;) Hi End I'm an Aussie Lymie who has been diagnosed as positive for Borellia by Infectolab. My daughter has also tested positive by both Infectolab and Australian Biologics. I suggest you find a Lyme literate dr in Australia and join the "lyme Australia and Friends" Facebook group which can...
  6. k-AUS

    3D map of human body by system or by organ

    Thanks for that Allyson. I will show this to my son who is doing PE theory at school. It may suit his learning style :))
  7. k-AUS

    Comorbidity of POTS & CFS in Australian Cohort (2013)

    I'm a patient at CFS Discovery and would likely have had my results included in this study. I have POTS and was prescribed a beta blocker (Inderal), electrolytes, salt and increased fluid consumption but it has not stopped my deterioration. I'm 90% housebound and pacing activities around my bed...
  8. k-AUS

    Looking for a good doctor in Brisbane

    It's worthwhile exploring the possibility of lyme and various co-infections even though it is an expensive exercise. I would definitely try and see the dr in Maleny as it seems more and more people are discovering their symptoms are due to lyme - not cfs/me or fm. I agree with "gcmaf...
  9. k-AUS

    Urine therapy

    ... drinking your own pee, maybe Bear Grills can give us a heads up on that one - every time I watched those doco's thats what he seemed to get up to.:lol:
  10. k-AUS

    Bruised feeling along spinal cord

    I had the same problem about 18 months ago - the feeling of my spine being bruised in between the shoulder blades. I went to the physio and (if my memory serves me correctly) he said it was caused by tight muscles and tendons rubbing along each other over the spinal area. Anyway, several...
  11. k-AUS

    Beaver gets Lymed. (Trimethoprim, Plaquenil?)

    That's very inspiring to hear that you are slowly recovering. Being only two weeks into abx and already feeling (more) crappy, at least there seems to be some light at the end of the tunnel :)
  12. k-AUS

    Lyme testing

    I think the gist of this thread was reached a long time ago - be wary of lyme tests. Well, I think that was the initial idea. However, it has progressed to a point that I find concerning - 1. What if some people are being influenced NOT to get tested for lyme and co-infections and they DO have...
  13. k-AUS

    Researchers identify bacteria as possible trigger for MS

    Good find Sea. I wonder if it can be tied into ME/cfs somehow?
  14. k-AUS

    Frustration and confusion

    I agree with brenda about the possibility of Lyme Disease. It wouldn't hurt to get this checked out.
  15. k-AUS

    Just found out I have Lyme

    taniaaust1 my melb. me/cfs dr sent a group of patients blood to infectolabs, so it cost me less than doing it individually. It cost me $100 for the blood draw and shipping. It would be worthwhile giving Infectolab Aust. a call as Limelight suggested.
  16. k-AUS

    In Belgium to see KDM

    I've been following this thread and having been recently diagnosed as having lyme and chlamydia pn. I'm wondering (worldwide) who is the best person to treat this? I'd seriously like to know.
  17. k-AUS

    Just found out I have Lyme

    The actual price list is found on the infectolabs website. Here is a breakdown of what the dr. ordered for me: Borrelia Elispot LTT (CPDA) 184.49 (euros) CD3-/CD57+Cells (Heparin+EDTA) 106.68 (euros) Borrelia IgG and IgM-EIA (serum)...
  18. k-AUS

    Just found out I have Lyme

    Haven't been back to see the dr yet, but I'm assuming antibiotics will be the way to go. The thing I'm curious about now is whether my teenage daughter has it too. She has had terrible joint, bone and muscle pains and always has weird rashes that the Dr's have labelled as uticaria and hives...
  19. k-AUS

    Just found out I have Lyme

    After 7 years of being diagnosed with ME/cfs and fibromyalgia I just found out I have lyme disease and chlamydia pn. I sent my blood to infectolabs in Germany and this is what they found: Borrelia burgdorferi antibodies (immunoblot) Borrelia-Blot-IgG-antibodies negative...
  20. k-AUS

    Terminated after 20 years

    I'm sure that every time you went to work it was like running a marathon. We all hold on for as long as we can and most likely do a lot of damage to our health in the process (I know I did). I also think it is common to feel "if only I had made that extra last effort, I could have prevented this...
  21. k-AUS

    Aus: Chronic Fatigue study to examine benefits of exercise

    The only body part I'm willing to exercise are my fingers - on the keyboard. Seriously, why are we wasting money on this type of research? :(
  22. k-AUS

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Great thread... I can't believe how much better I feel when I take 2 Nurofen Plus (200mg Ibuprofen & Codeine phosphate 12.8mg). For me it is the difference between staying home or being able to get out and go to the shops (or out to a social function). ATM I am having trouble walking more than...
  23. k-AUS

    What category do you fall into for your diet?

    During my lifetime I have never been a vegetarian. I have always had a very healthy well balanced diet, regularly exercised (pre ME) and maintained a similar weight. What has changed since developing ME is my body composition (not weight) due to lack of exercise and extreme hypoglycaemia. I feel...
  24. k-AUS

    ME article in Melbourne newspaper Jan 2012

    Hi guys, Being a Melbournian, I have to say that I was happy to see that The Age had included this article. Yes...great publicity. However, when I finished reading the article, I felt quite negative as I felt that it focused too much on the "fatigue" element and how that impacted on life...
  25. k-AUS

    weak legs

    Hi Snowathlete, Heavy, weak legs (particularly the quads) are one of my main symptoms and I have found that the severity correlates with the degree of OI I am experiencing. My legs are naturally strong but have little endurance. The only thing I have found that helps is making sure I don't...
  26. k-AUS

    GOOD things happening!! Am I a responder???

    Wow....what a great response your having. Thank you for posting about your experiences, you r giving the CFS/ME world such hope. I cannot imagine having this horrible disease for 35 years. I'm crossing my fingers (and toes) that your recovery will b ongoing. BUT PLEASE DON'T OVERDO IT...
  27. k-AUS

    Black Dog Tribe - Ruby Wax's new website for people with mental illness

    bob, what a great website. Thanks for sharing this with us :thumbs up:
  28. k-AUS

    stomach swells till i look 9 months pregnant..anyone else?

    hi hurting, Another area to investigate could be fructose malabsorption. That is the sugar found in some fruits and vegetables. A hydrogen methane breath test would diagnose this. I have this plus an intolerance to the protein in dairy and eggs. That bloating feeling is awful - hope you feel...
  29. k-AUS

    It's all in the Gut. Why we get ME/CFS

    Rrrr, I see a doc in Aust that works with KDM, currently I am taking Mutaflor. I was given the contact details of a German supplier to source these tablets: Metropolitan Pharmacy Flughafen, Frankfurt Email: FRA@metropolitan-pharmacy.de (address the email to Nicola) Fax: +49 69 69 58...