• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Z

    Should steroids be avoided?

    Thank you all for your extremely informative and helpful responses. The prednisolone prescribed is 25mg x 5 days and Nasonex 100mcg/spray each side. If these fail, he'll recommend that I go for polypectomy to remove a nasal polyp. After the procedure, I have to stay on steroids for another 6...
  2. Z

    Should steroids be avoided?

    Today, my ENT doctor prescribed 5 days supply of oral Prednisolone followed by 6 weeks of Nasonex spray to reduce sinus congestion/ post nasal drip. Just wondering what effects will these have on those of us with me/cfs. Any input will help me make an informed decision. Nasal washes helped...
  3. Z

    Any treatment for nasal Staph Aureus infection?

    Thanks to all for your replies. Swab culture showed sensitivities to Fluclox, Cefazolin, Cephalexin and Erythromycin. All these will cause GI disturbance to my sensitive gut which includes pain and slow digestion. Antihistamines did not offer any relief. Will be going for mini CT sinuses next...
  4. Z

    Any treatment for nasal Staph Aureus infection?

    Any suggestions other than antibiotics, for someone who has leaky gut and candida? Doctor prescribed Keflex which I'm reluctant to take because it causes GI upset and destroys the good bacteria in the gut. Have been having smelly post nasal drip for a month, hoping it would go away, but it does...
  5. Z

    Restless brain

    I have severe feeling like thousands of ants crawling in the brain. This happens all day and during sleep, causing me to wake up intermittently. Very frustrated. Any one with similar experience?
  6. Z

    Restless body instead of restless legs syndrome

    Does anyone experience restless body syndrome as opposed to restless leg syndrome? Thought it could be excitotoxicity and requested Doc to prescribe Gabapentin, which makes me very drowsy at 100mg. I feel nauseous and loss of appetite. This is taken with Lamictal in the morning and Rivotril at...
  7. Z

    Do you experience drowsiness after taking Gabapentin?

    Thank you all. My doctor said 100mg is the dosage for pediatrics and therefore he put me on 300mg twice a day which numbed and knocked me out completely. My Mom had to feed me during meal times. I shall taper it down gradually and give NAC a go. I read about Acetylcysteine on the website...
  8. Z

    Do you experience drowsiness after taking Gabapentin?

    Thank you to all for your input. I have learnt lots from you. I woke up this morning feeling numb all over, including lips. All I had was 150mg of Gabapentin last night. The tremors are gone but this brain firing/racing is still there. Valentijn- May I know what dosage of NAC should one start...
  9. Z

    Do you experience drowsiness after taking Gabapentin?

    My doctor prescribed 300mg of Gabapentin twice a day and the first morning dose I took just knocked me out completely. I resorted to half the dose and they make me very drowsy. Would like to hear from those of you who have been on Gabapentin for a while if they have this effect initially. I am...
  10. Z

    Anyone experience tremors?

    I have been having tremors, increasing in severity over the past 6 months. It's worst when lying down and relieved temporarily by jumping on the spot, which makes me very exhausted. Dr suggested increasing Rivotril from 0.25mcg to 0.75mcg. It didn't help. I'm on Lamictal (anti epilepsy) as well...
  11. Z

    Would You Like a Personal Consultation with Dr. T? (Teitelbaum)

    Was charged $34+ shipping cost for 2 bottles of (overpriced) supplements to Australia, which took 2 months to arrive. DHL Express shipping from iherb costs $12 and arrived after 3 working days! Will never ever purchase from Endfatigue.com! Haven't we suffered enough ?!
  12. Z

    Advice wanted for overseas patient seeing Dr Klimas

    Hi, I am Zuriel's mom and carer. He's having a major crash and has asked me to thank all you wonderful people who contributed helpful ideas and suggestions towards our upcoming trip to Miami. Unfortunately, we'll have to postpone the appointment as I just found out that his passport expired in...
  13. Z

    Advice wanted for overseas patient seeing Dr Klimas

    Thanks, Sushi for all the informative tips which I wrote in my notebook. Been very unwell from those last minute searches. My parents said they will now take over while I go for a much needed rest. Pray and hope that this difficult trip will not be in vain, even though I know there is no...
  14. Z

    Advice wanted for overseas patient seeing Dr Klimas

    Thank you all. Valentijn- Have come across vrbo.com ( Vacation Rentals by Owners), which is more user friendly than Craigs List. Unfortunately, VRBO has only one big condo available in Kendall for $139- $149 a night during low season, $159-$169 during high season. Is Jan/Feb considered low or...
  15. Z

    Advice wanted for overseas patient seeing Dr Klimas

    Thanks, Valentijn, Sushi and Niall for your constructive suggestions. My parents and I would be very lost if not for all you helpful people out here, 9000+ miles from home. Sushi- I'll be seeing Dr Klimas at The Chronic Fatigue Center at N Kendall Dr in Miami. The clinic emailed me a list of...
  16. Z

    Very unsettled with constant brain firing

    I am on Rivotril (Klonopin) and Lamictal which is another anti epileptic, but brain still fires (overstimulation, mental bombardment) all day and night. Anyone with similar experience? Dcotor's clinic is closed until the following week. Is this a symptom of neuropathy which is why I have...
  17. Z

    Advice wanted for overseas patient seeing Dr Klimas

    Sorry, posted a reply last night but doesn't appear here. Anyhow, many thanks to Ocean and Sushi for your helpful tips and advice on long haul flight. Niall- self contained means 'furnished'. I'm hoping for an accommodation that comes with a furnished kitchen, complete with appliances and...
  18. Z

    Advice wanted for overseas patient seeing Dr Klimas

    I plan to embark on a 20-hour flight to see Dr Klimas. Does anyone know of any self-contained accommodation and any eateries that sell gluten free meals near her clinic? Besides keeping myself hydrated through electrolyte drinks, what other do's and don'ts that I should be aware of? Any advice...
  19. Z

    Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

    Hip- Thank you for your helpful info. Have found the product.
  20. Z

    Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

    Hip- Can you please let me know the brand for zinc carnosine 27.5mg? The ones from iherb come in 37.5mg. Thanks
  21. Z

    Ortho Molecular (Gut Repair Kit) Potential Game Changer!!!

    Valentijn- May I know the name of the multivitamin from Ortho which does not contain folic acid? Their Alpha Base vitamin (without iron) has folic acid. Thanks
  22. Z

    Immunovir/isoprinosine in Australia

    Heapsreal- Do count me in. Would try anything just to feel a wee bit better. Is a prescription required to purchase immunvoir?
  23. Z

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

    What's a Special Carbohydrate Diet? Will someone please tell me what constitutes a Special Carbohydrate Diet? As an Asian, I consume rice almost daily. Don't know if this is the reason why I'm having severe gut issues. My esophagus & stomach seem to contract on top of extremely slow stomach...
  24. Z

    Why this sudden feeling of severe agitation?

    I took a 2 hour rest in bed to ease my backache when I had this sudden extreme agitation came on. Just felt like punching the wall. Tried fist clenching & teeth biting to no avail. It was very scary. This was gradually relieved after I took some food. Anyone had this experience before? I'm on...
  25. Z

    Any suggestions to stop brain firing?

    Anyone knows if taking Rivotril (klonopin) and Lamictal as a combination will cause brain firing? This brain firing has been on during day & night, making me extremely agitated. Would taking GABA supplements help? Next appointment to see doctor is in 3 months' time. He's too busy to return...
  26. Z

    Dr. Chia Produces New Form of Oxymatrine

    Thanks, globalpilot. Was the stomach biopsy procedure carried out under general anaesthetic and what was the total cost of the procedure, including fees for the gasteroenterologist, anaesthetist and hospital stay? This information would help decide if I can afford to make a trip over to see Dr...
  27. Z

    Dr. Chia Produces New Form of Oxymatrine

    CBS- G'day! Many thanks for the information and support after hitting many brick walls. Cheers.
  28. Z

    Dr. Chia Produces New Form of Oxymatrine

    Anyone knows the cost of test for enterovirus and the procedure? I was directed to www.evmedresearch.com but could not find out how the procedure is carried out? Dr in Australia shook his head and laughed when I mentioned the possibility of enterovirus making my gut feel so awful.
  29. Z

    Airplane travel

    What about those who intend to take a 25-hour flight? What are the preparations and the risks? Thanks.
  30. Z

    Poor gut function, excessive brain firing and severe OI

    Valentijn- Yes, both Rivotril (Klonopin) and Lamictal ( Lamotrigine) are prescribed by the same doctor, together with melatonin (contains GABA) and 1500mg of L-Glutamine. Do you or anyone know if L-Glutamine is a form of glutamate? Francelle- 'brain firing'. The brain cells get very excited or...