• Welcome to Phoenix Rising!

    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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    Dr Chris O'Callaghan

    Sorry to bump up this thread and it's now nearly 2019. My son had a relapse of his CFS symptoms, in particular, POTS. Anyone here has any good experience with cardiologists dealing with the latter? I'm seeing a GP for the last time this year tomorrow until Feb next year (the next appointment)...
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    Hypersensitivity to noise - what's the reason?

    Does anyone know why some me/cfs sufferers are hypersensitive to noise to the point of developing a phobia to it? What can help reduce the sensitivity to noise? Is this a neurological issue or MTHFR mutation?
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    Anyone consulted Colleen Walsh- MTHFR?

    She is called the 'Queen' of MTHFR. I did 2 phone consults costing A$ 900. She wrote a follow up report for the first but not the 2nd consultation. Was told there would be a long delay for the 2nd follow up notes. After having waited for 7 weeks, I emailed her but was ignored and phone calls...
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    Anyone seen Dr Christabelle Yeoh in Sydney, Australia?

    Thanks xrunner & AndyPandy. Dr L was among those who gave up on my son when initially, he told us there's a good chance of recovery because he was young. As time went on his condition worsened and there wasn't much he could do really other than symptomatic treatments which didn't help at all...
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    Anyone seen Dr Christabelle Yeoh in Sydney, Australia?

    Hi, Just realized I posted this under Blogs instead of Forums. We are from Melbourne and would love to hear from those who have been to see Dr Yeoh. Just wondering if we should make the trip as my son is fairly ill with CFS and 'borderline' Lyme. Doctors and naturopaths have given up on him...
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    caremom

  7. C

    Anyone seen Dr Christabelle Yeoh in Sydney, Australia?

    We are from Melbourne and would love to hear from those who have been to see her. We are wondering if we should make the trip as my son is fairly ill with CFS and 'borderline' Lyme. Doctors and naturopaths have given up on him. Someone suggested Dr Richard Schloeffel, who charges $600/hr which...
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    Taste impairment

    Wonder anyone experience loss of taste sensation and any remedy for this? My son has this for the past 3 weeks. Thanks.
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    Lyme Drs in Australia

    Anyone seen Dr Peter Mayne? He charges $750 per hour for first appointment and $375 for half hour follow up consultation. Wonder what is his treatment protocol and if they are effective.
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    Wisdom tooth extraction- any advice?

    Thank you all for your sharing your experiences and information re anesthetics. Will request for cfs-friendly local anesthetic along with a mild sedation like iv Midazolam for severe anxiety. Shall try out those complementary remedies to reduce post op pain. Wayne- will liposomal vit C irritate...
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    Wisdom tooth extraction- any advice?

    My son has CFS for 5 years. His wisdom tooth is wobbly and causing pain spreading to his head. Looks like an extraction is inevitable. Can someone please advise on the precautions he needs to be aware of as he's just undergone a general anesthetic for appendicitis a month ago. Thanks.
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    Maltodextrin- is it beneficial?

    Does taking maltodextrin give you more energy? This is considered a neurotoxin when packaged in food. Just wondering if it is safe for people with me/cfs?
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    Overseas patient seeks information on accommodation near Dr John Chia's clinic

    26 days, including 2-3 weeks wait for lab results. Is there a difference between having tests carried out at Labcorp or Quest laboratory? Booked an apartment with full kitchen in Hawthorne Blvd. Hope the location is not noisy, otherwise I'm in big trouble as son is hypersensitive to noise...
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    Why brain more restless when lying down?

    Anyone has similar experience? My son, who also has Aspergers, actually gets relief when in upright position and doing spot jumping. But then this jumping makes him very fatigue and longed for rest on a recline chair or lie down in bed. However, within seconds, he has to get up due to the brain...
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    Overseas patient seeks information on accommodation near Dr John Chia's clinic

    My son has an appointment with Dr Chia and we will arrive in LA sometime in July. Any information on choice of accommodation would be much appreciated. Would prefer a quiet, furnished apartment to do our own cooking due to his many food intolerance. Thanks.
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    Are steroids harmful?

    Shoesies- Do you mean Braggs apple cider vinegar inhalation? heapsreal- Wow! Can't imagine going on antibiotics for more than a year. Thought antibiotics destroy both good and bad bacteria.
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    Anyone a patient of Dr Alison Bested?

    Thank you, globalpilot, for sharing. Very informative. You are right; Dr Bested now runs the Complex Chronic Disease Clinic in Vancouver. Now reading her book, ' Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia.'
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    Anyone a patient of Dr Alison Bested?

    Would love to hear from anyone who has been to see her in Toronto. Thanks.
  19. C

    Are steroids harmful?

    I put in sea salt and a drop of tea tree oil for the nasal wash, but he experienced excruciating, burning pain from the nose all the way to the brain. The next time he tried just tepid water and the pain was there. Does anyone know how to prepare a soothing wash to flush out the goo? His ENT...
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    Are steroids harmful?

    Adreno- Proteolytic enzymes contain bromelain which comes from pineapple, a fruit he is intolerant to, unfortunately. Is there a bromelain-free proteolytic enzymes? He's taking papaya enzymes. Ema- My son doesn't have MARCONS staph, just moderate level of Staphlococcus. Had a course of...
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    Are steroids harmful?

    My son has blocked sinuses from Staph infection for many years. He complained of petrol odor from his nose along with post nasal drip. ENT doctor (not knowledgeable on CFS) gave a prescription for 5 days of 25mg prednisolone and nasal wash which he finds too smarting. Wonder how damaging are...
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    Antidepressants

    Wonder can one take NAG with Prozac?
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    Anyone seen Dr Neil Nathan in California?

    Would love to hear your experience on his treatment.
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    Heavy Metals

    My son's hair analysis by Doctor's Data showed high levels of mercury, thallium and antimony. Any ideas on ways to chelate them? He does not have fillings and the mercuruy could come from the consumption of fish and the vaccines he had as a child, but no idea why thallium and antimony are high...
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    Anyone a patient of Dr Gonzales in New York?

    Chronic Fatigue Syndrome is one of the illnesses he treats, as stated on his website. Anyone tried his enzyme therapy protocol? Thanks
  26. C

    Nagalase level increased after MAF314

    GcMAF Australia- Thank you for the info and the link. Very interesting read. Wonder what is the percentage of me/cfs sufferers having leaky gut. The gastroenterologist my son went to dismissed leaky gut as 'nonsense'!
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    Nagalase level increased after MAF314

    GcMAF Australia- You mentioned a doctor who does a lot of ME/CFS in Australia. Is this doctor based in Brisbane, Melbourne or another state? We used goat's milk even though he is also intolerant to it, but to a lesser extend than cow's milk. I have emailed Dr Enlander on this and awaiting reply.
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    Nagalase level increased after MAF314

    GcMAF Australia- Do you mean reducing from 125mls daily to say 80mls? Would it be beneficial to switch over to inj GcMAF instead? Anne- You are right. The results arrived well after my son started on MAF314. It was taken in Feb, despatched to Redlab at the end of April and the results came in...
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    Nagalase level increased after MAF314

    ukxmrv- Glad you see some improvements after the first month on MAF314. We haven't seen any improvements having been on it for 9 weeks. On the contrary, new debilitating symptoms surface but not sure if this has something to do with the raised nagalase.
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    Nagalase level increased after MAF314

    Dufresne- The Nagalase was tested by Redlabs, Belgium. Sushi- There is no doc in Australia who "specializes" in me/cfs. The one whom my son is seeing has an "interest" in me/cfs. The next appointment to see him is end of next month as he is away. In the meantime, I'm not sure if we should...