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    Mycobacterium abscessus

    Really sorry to hear about your situation. I am in the same place. Abscessus diagnosed 6 years ago, and Aspergillus more recently. The abscessus is by far the worst of the two for me, and my docs are concentrating on getting some kind of control. The good news is, that although the initial...
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    Altitude Tent?

    whoa!! It won't deliver oxygen, it will deprive you of oxygen, mimicking the thin air found at altitude. The rationale is that for athletes that will result in a raised haemogblobin level, and better oxygen carrying capacity when they come back down to lower altitudes. But they are fit...
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    Acupuncture or chinese traditional medicine

    I've had acupuncture for the nausea I get when I take iv antibiotics- it definitely helps
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    Vest. UK

    A question specifically for those in the UK. Do you have a vest? Was it supplied by the nhs? I have not been offered a vest, and been told that the most effective drainage is done using a PEP device. Thanks.
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    Severe Muscle Aches and Pseudomonas

    Yes.Any increase in infective burden in your body, whether pseudomonas,staph, ntm etc can all trigger aches and pains or reactive arthritis. Sometimes the first symptom for me of a chest exacerbation is joint pain, and it always gets better as my chest gets better
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    Running out of IV med options

    So sorry you are in this position.. It might be useful to know which bugs you have? I have m abscessus and aspergillus and while it's theoretically resistant to everything, combining three ivs at a time still gives me some symptom control.There are a FEW new things in the pipeline if you...
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    Weight Gain

    I sympathise. I used to watch my diet carefully to avoid weight gain, but now I'm underweight and have vitamin deficiencies and osteoporosis. And when you've lost your appetite or are feeling sick from iv antibiotics, there's nothing worse than being pressed to eat. A friend bought be a...
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    nearest cf facility to Santa Fe?

    Ljberk, thanks so much, that's mega reassuring. Have no done any long haul travel since diagnosis but......go for it!!
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    nearest cf facility to Santa Fe?

    Thanks, that's really helpful and reassuring
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    nearest cf facility to Santa Fe?

    Hi, I'm in the UK and haven't travelled long haul since my diagnosis of mycobacterium abscessus. But I'm fairly stable between treatments and have travelled within Europe. My fear is getting an acute chest infection and not being near a facility with the knowledge to treat it aggressively and...
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    Medical mystery: Collection of weird symptoms

    you can get a reactive arthritis when there is a high burden of infection in the body-so maybe it's related to his sinus infections? Might be worth asking what your doctor thinks of this idea. In a reactive arthritis the bloodwork can come back quite normal. I have had reactive arthritis...
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    Newly Cultured NTM/MAC

    Ntm So sorry you have had this diagnosis - but at least you now know why you feel so bad, and can start making a plan with your doctors to treat it. The two commonest types of NTM are MAC and abscessus. You will be pleased to know that of the two, MAC is the better one to have. It's going...
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    Acid reflux / heartburn

    I'm puzzled too by the change from ppi to zantac Generally ppis are much more effective, but slower to work. zantac can give quick relief when you have symptoms. I add zantac to ppi when my symptoms are bad. Reflux has been linked to infections like atypical mycobacteria, so it's...
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    Mycobacterium Abscessus

    dear Michelle. i can well understand your worry about waiting so long for a plan. But this bug, though horrible, is a 'slow burner' and as treatment is complex and not without side effects it pays to wait for maximum information and a clear and logical plan. in particular the...
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    Mycobacterium Abscessus

    So sorry for your bad news. I was diagnosed with abscessus just over 3 years ago. I'm in hospital right now, to start another round of ivs. You mention oral therapy, but the more usual plan is to try for eradication with a regime involving at least some ivs. I won't pretend- the iv...
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    Painful rash, joint pain, swelling

    In cf the body is constantly fighting infection. Your immune responses are working overtime and this can cause reactive arthritis and rashes.Test will be negative, except for raised inflammatory markers such as crp, making it a diagnosis of exclusion. I've had the arthritis but not the...
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    sweating in the night

    I have dreadful sweats, but I have chronic mycobacterium abscessus infection I did try hrt in case it was menopause related, but it made no difference. Maybe it's cf related, but I think you should discuss it with your doctor, so that they can rule out infection as a cause.even if...
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    Top remedies or tools for CF related ailments

    Great post! For nausea during iv antibiotics,ginger tea, mint tea, or a mustard seed taped to the wrist acupressure point (you can google where to locate this) hot water bottle for ribs strained by coughing aromatherapy oils for sleep disturbance (lavender is my favourite) I have...
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    Pseudomonas Aeruginosa Erradicated

    I cultured PA spring last year. (I don't have cf but I do have bad bronchiectasis and m abscessus) I had 2 weeks iv meropenem and 3 months neb colistin. Sputum neg for PA since. Haven't had a bronch specimen, but several assisted specs with physio and bird ventilator.
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    long term linezolid

    Thanks Michaell On 600 mg I started to get painful neuropathy after a month, but it settled a great deal after stopping it, leaving just a mild tingling. I had another month of it later that year with similar result. We are thinking of halving the dose next time.I have also...