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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. J

    Urine sample test

    Hi Pam I have since this post had an appointment with my neurologist who has now put on my hospital records that I have chronic infections as cause of seizures. I also had an appointment a few weeks ago with the neuropsychiatrist and when she saw the amount of infections over the last 6 months...
  2. J

    Urine sample test

    After the last 13 years and all my tests coming back normal except ear swabs the last 4 years howing pseudomonas aeruginosa I had been back to my gp after still not feeling well and getting the same old antibiotics as I only have cipro left to treat it. The last time my GP asked me to do ear...
  3. J

    Infectious diseases specialist

    I just got my letter back from the hospital for tropical diseases, at the bottom of the letter he said that the tingling in the hands arms and below my ribs were unusual symptoms of a bacterial infection. I had told him every nerve in my ribcage not below the ribcage stung and all down arms and...
  4. J

    Infectious diseases specialist

    I had my appointment with Proff Mabey and he was shocked I hadn't been seen before and had been ill for 19 years since I caught pseudomonas aeruginosa. I have had around 4 months of antibiotics and a GP gave me a 10 day course while I waited for this appointment which came very fast. I told...
  5. J

    Infectious diseases specialist

    I have got my appointment to see a Proff D Mabey or one of his team at the hospital for tropical diseases on Wed 24th Jan. I hope I can get some other treatment.
  6. J

    Infectious diseases specialist

    Hikaru thank you I have just spoke to referrals today who have said that it will be UCL hospital that I am referred to so at least they will have access to all my previous hospital records at the national hospital fot neurology, Grays Inn Rd ENT. I think it is the hospital for tropical diseases.
  7. J

    Infectious diseases specialist

    andy thanks I will do and keep you updated on what happens. Problem I have had is the neurology hospital wont put it in writing but told me in person that infection is cause probably because I had brain surgery at that hospital about 18 months before I had appendicitis at my local hospital I...
  8. J

    Infectious diseases specialist

    I just hope they are not going to turn me away like the ENT hospital has done previously. I have infection at moment so am on antibiotics but by the time I get a referral I will look alot better. I think I will ask to go to hospital for tropical diseases as they will then see all previous...
  9. J

    Infectious diseases specialist

    I am being referred to an infectious diseases specialist after 3 years of trying to get rid of an infection pseudomonas aeruginosa. I also have epilepsy and anm under a neurologist, this was caused by the infection and prior to that had brain surgery which had made things more difficult in...
  10. J

    unrest

    I think I am in facebook group but not wrote anything in there yet but will do. x
  11. J

    unrest

    I have just found out that healthwatch Brent are going to fund it and CVS Brent who help people who are isolated are letting me use the room for free. All I need to do now is get a speaker to attend and healthwatch are going to look around for me nd help me with that but if there is anyone in...
  12. J

    unrest

    Hi everyone I am looking at showing unrest in my local community in January, I was hoping to show it earlier but wasnt sure where I was going to screen it. I have a local community space who I spoke to where I also volunteer but because of breing busy with run upto xmas they didnt give a yes...
  13. J

    Short film about the experiences of ME sufferers in Kirklees and Calderdale

    Pike Thanks for this video. I am just sorting out showing unrest in my area and I got somewhere to show it for free but they wasnt covering the costs for the film just room to show it. I had been to speak to someone from healthwatch in my area a few weeks ago and after I got the ok from...
  14. J

    CBT help??

    Thanks for your replies and hugs to you all too :hug:. I went to the appointment today and was amazed she didnt pressurise me into doing anything more. I mentioned that I had been in contact with someone who I previously done some volunteering for about a project for people who are isolated...
  15. J

    CBT help??

    Hi everyone I found out after 9 years of an ME diagnosis that I had a pseudomonas aeruginosa infection that I caught in hospital 10 years earlier that spread spinal chord, brain causing ME. I had originally got treatment via IV antibiotics and thought no more until it returned. It is...
  16. J

    PEM "neuro" flare, others ever experience similar?

    I get nerves down face affected, I spent 3 days in a stroke unit a few years ago but wasn't a stroke. I got diagnosis few years later and my neuro has admitted it is the infection. I had flare up a few weeks ago and had to take 2 weeks of ciprofloxacin. My teeth were in pain then spread up...
  17. J

    PEM "neuro" flare, others ever experience similar?

    I just see you had a pseudomonas infection, I am currently being treated for pseudomonas aeruginosa diagnosed by an ear swab. My blood results have only ever shown elevated mcv and mch. The pseudomonas has been treated by about 14 weeks of ciprofloxacin and gentamicin. I have neurological...
  18. J

    Would strong antibiotics relieve CFS or M.E symptoms?

    http://textbookofbacteriology.net/pseudomonas.html http://www.theguardhttp:/ian.com/uk/2007/nov/18/health.society
  19. J

    Would strong antibiotics relieve CFS or M.E symptoms?

    Hi Htrj, I was ill for last 15 years but didn't go to my gp until 10 years ago when my symptoms became so bad that I had to give up work. Prior to visiting my gp I had been suffering with repeat urinary tract infections and after finishing a course of antibiotics I was straight back for...
  20. J

    antibiotic resistant infection

    Hi Uno Sorry to hear you are ill, was you diagnosed with M.E in the beginning? I am just glad to get to bottom of it. I get about 3_4 months out of a course of antibiotics and am now looking to see if anything else will work. I can't believe all the doctors I saw no one could diagnose me yet...
  21. J

    antibiotic resistant infection

    I just wanted to say last week I had to go to hospital due to relapse and I saw a doctor who seemed to know what he was talking about for a change. I had severe nerve pain and exhaustion and knew I needed a course of antibiotics but seeing the right doctor that will prescribe them has been...
  22. J

    Comment by 'jenny39' in 'Has anyone dealt with any of these Parasites?'

    I have pseudomonas aeruginosa infection had it over 10 years before getting diagnosis, it antibiotic resistant so all previous antibiotics I had been on it was resistant to. I was then given ciprofloxacin that my GP doesn't usually prescribe as last resort and have noticed huge improvement.
    • jenny39
    • Blog entry comment
  23. J

    antibiotic resistant infection

    Thanks South I will have a look into that.
  24. J

    POLL: Swollen lymph nodes: Did you have these before getting ME/CFS, or did they only appear after?

    I have had swollen lymph nodes for the last 12 years started under the arms, elbows wrist and ears then all in neck were painful. After many years of tests I eventually had an ear swab after a flare up of ear infections and this showed pseudomonas aeruginosa an antibiotic resistant strain so...
  25. J

    antibiotic resistant infection

    https://microbewiki.kenyon.edu/index.php/Pseudomonas_aeruginosa_infection#Central_Nervous_System
  26. J

    Neuropsychiatry referral NHS - any point ?

    https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Neuro/NPSY/Pages/Home.aspx I recently had a referal to see a neuropsychiatrist here after over 10 years of an ME diagnosis and when waiting for the referal I got a diagnosis of pseudomonas aeruginosa, I saw the neuropsychiatrist in the homeopathic...
  27. J

    antibiotic resistant infection

    Yes the hospital is the National hospital for neurology, I have been under there for the last 23 years for epilepsy and previously it has been a great hospital over the years but when you have something else on top and are refered back there they seem to just refer you to the consultant you are...
  28. J

    antibiotic resistant infection

    I had my last appointment with my neurologist who has now admitted that the pseudonymous has been the cause of my neurological symptoms and caused sclerosis of hippocampus and epilepsy. So I had meningitis from it he also disagreed with the ear nose throat hospital who I have now emailed and...
  29. J

    antibiotic resistant infection

    Thank you I have a look through these tomorrow. Thats what I thought myself but GP said no so had to go to a new GP. I currently have a solicitor involved due to misdiagnosis and refusal to treat. I just have some nerve pain left over but last had a course of cipro about 5 weeks ago so chance...
  30. J

    antibiotic resistant infection

    Hi everyone I have been ill for last 10 years with an original diagnosis of ME, I had been tested for loads of other things over the years and main symptoms where ENT infections and neurological. I was already under a London neurology hospital for epilepsy and they couldnt tell me what was...