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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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  1. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    #Wayne -- what link?
  2. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    Benzos are tricky. You have been on CLOn for a relatively short time so, yes, it could be just a stomach bug but I have heard of quick tolerance and inter dose withdrawal. I am not sure why your RX would have you taking CLOn in 4 doses since it is more long lasting than, say, XAN or used...
  3. josephine2

    Treatment recommendation for Epstein-Barr-virus-related mucocutaneous ulceration in throat?

    Still here -- still bad
  4. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    I know folks believe the nonbenzo Z drugs are safer than conventional benzos. But they act very similarly in the brain/body. In a way they are worse since they are like a quick sledge hammer which wears off in a few hours. And then - there you are awake in bed with insomnia withdrawal that is...
  5. josephine2

    Flumazenil to help high dose benzodiazepines users

    Flumazenil not commonly used in U.S. https://pubmed.ncbi.nlm.nih.gov/28613124/ Anecdotally, I know someone who benefitted from flumazenil long after discontinuing Clono and was in protracted withdrawal syndrome. Interesting.
  6. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    Yes - thoroughly aware of all of this, tnx.
  7. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    I'd be glad to contribute. Let me know where and how. Decades ago I was prescribed Ativan by a shrink working with an M.E. doc when I was first diagnosed with CFS. I cold turkeyed Ativan and had no idea I was in acute withdrawal for weeks. I had panic for the first time in my life when I...
  8. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    Yep, I remember scraping off a tab every night for months of eszopiclone with a razor. I, too, was afraid to crossover to Val -- the devil you know, etc. I think if I had to do it again I would, though. These fast acting, short half life BzRAs are so difficult. I was able to hold for a long...
  9. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    Hi 2Cor -- how are you tapering Xan? Dry cut or other way. Did you try to transition on to longer acting ben like Val. Curious you you are doing.
  10. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    Helping people get off this class of drug is a tricky business since the docs prescribing them believe that their patient's withdrawal symptoms are really attributed to an underlying condition. I've found that most docs know little to nothing about benzo or z drug interdose withdrawal or...
  11. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    I'm referring to the gold standard of the Ashton Manual regarding protracted and BIC https://www.benzoinfo.com/protracted-withdrawal-syndrome/ There's no need to cause undo stress on someone who only has a few months post benzo taper/cessation to believe they may be in protracted withdrawal. I...
  12. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    I am so sorry you are near 9-10 with CFSME symptoms. If you cold turkied off your benzo, it could explain why you feel you are in protracted. But protracted is generally beyond 18 months off the benzo or Z drug. I, personally, would wait until I have more time off only because reinstating may...
  13. josephine2

    Treatment recommendation for Epstein-Barr-virus-related mucocutaneous ulceration in throat?

    Treatment recommendation for Epstein-Barr-virus-related mucocutaneous ulceration in throat? I'm done going to ENTs who shrug their shoulders and tell me to not eat citrus and gargle. I'm self diagnosing a bit now. The sores/ulcers are only painful in the throat. I have the crimson crescent...
  14. josephine2

    What Questions to ask Rheumatologist?

    Thank you so much, Zebra. Will keep you posted.
  15. josephine2

    What Questions to ask Rheumatologist?

    First time seeing a rheumatologist because ENT docs could not diagnose crimson crescent many months long sore throat with sores inside cheeks mouth. Need to r/o dx for Lupus? And also osteo arthritis in knees What blood tests? sero neg arthritis ? ANA? (My EBV panel is pos., BTW...
  16. josephine2

    Clonazepam (Klonopin) stops my symptoms almost completely

    I guess I'll jump in here since it took me months to taper off klonopin's ugly cousin, eszopiclone (lunesta) in 2016. I used a jeweler's scale. My receptors are still unable to handle stress. Short term phenobarb makes sense in withdrawal since it may mess with a different part of the GABA...
  17. josephine2

    EBV panel test results - thoughts

    I'm speaking with my infectious disease doc next week. But I'm alarmed now. Only EBV Ab VCA, IgM is within. EBV Ab VCA, IgM <36.0 U/mL 0.0-35.9 Negative <36.0 Equivocal 36.0 - 43.9 Positive >43.9 EBV Ab VCA, IgG 423.0 High U/mL 0.0-17.9 Negative <18.0 Equivocal 18.0 - 21.9 Positive >21.9...
  18. josephine2

    Any Use Taking Famcyclovir for a Long Time EBV sufferer?

    I have taken an antiviral in the past for elevated chronic EBV titers and did not recall relief. I am in a long relapse now so am willing to try Famciclovir. I've had elevated titers for 35+ years. I thought I was in a relapse of sxs of mycoplasma pneumonia but sxs have not responded to...
  19. josephine2

    For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress? Or is it skewed ?

    Hi - will have learn how to quote Post menopause so I rarely get migraines. I used more imitrex in a week that I have in the last five years. I learned that in 2016 I was infusing gammaguard at 28mgs in 3.5 hours. I am about 177 lbs. This last time I infused 30mgs in the same 3.5 hours...
  20. josephine2

    For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress? Or is it skewed ?

    It must be high at only 3.5 hours - but I can't find RX last order - you'd think I'd remember - 10 grams?. I have a home nurse. There us also some sodium chorlide. I get the migraine in the middle of the night or am (hurts to even lift my head) and it diminishes with 20mg Imitrex nasal- if...
  21. josephine2

    For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress? Or is it skewed ?

    Thank you@boohealth and @Gingergrrl -- I am on one FB page but would like to find more. Is MCAS - macrophage chemotactic activity - sorry new here I use Baxter - Gammagard which is stabilized in glycine -- I can't find the order right now but I have not ever had a problem with IVIG until...
  22. josephine2

    For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress? Or is it skewed ?

    Yeah - I knew about the water day of - now day before good. For the future, doc thinking of Rxing saline first and then infusion. I'll ask for longer - like double it to 7 hours. Atarax looks promising since not a benzo. RIght now I'm in crisis of dealing with morning migraine which only...
  23. josephine2

    For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress? Or is it skewed ?

    Um - jumping on this thread since I am on gammaglob IVIG. SOmething felt wrong this last time because I developed daily migraines since. RX unchanged. I tried to stay hydrated and once in awhile I'll get a headache the next day but this time was different. So doc says maybe aseptic meningitis...
  24. josephine2

    Comment by 'josephine2' in 'Then… And Now – What having ME has taught me.'

    Following you since I'm a long (even longer) time sufferer. I've finally accepted I must use this forum but afraid of making others afraid.
  25. josephine2

    Help identify this rash please

    I see discussion about rashes all the time on http://www.benzobuddies.org/forum/index.php --- it is a frequent sx of benzo w/d or possibly interdose w/d or tolerance.
  26. josephine2

    The Lost Years

    34 years with many partial remissions but never got back to 100%. I used to be able to pinpoint the exact date of onset but as the decades passed, I stopped remembering. I had mono age 16 and recovered. I remember that. So I am guessing in my early 20s I got ill. But I did not take care of...
  27. josephine2

    Anyone quit their benzo or would like to?

    I tapered off my Z drug last year and am embarking on a benzo-free life with M.E. I think some of my symptoms were due to the drug and had nothing to do with my M.E. I think these drugs are dangerous for long term use. I have not encountered a single doctor that understands the dangers of...
  28. josephine2

    Paleolithic people ate porridge

    Just jumping in, whodathunkit, because I think I have pancreatitis. My fecal pancreatic elastase was off the charts and I have symptoms. In spite of having ME - I was drinking - not a whole lot and just these past 2 years due to an unbelievable stressor, but I guess my number is up and I have...
  29. josephine2

    FDA approves new type of sleep drug, Belsomra

    There is a 10 day free trial available for 10mg tablets of Belsomra, though it doesn't seem that 10mg is an effective dose. I'd be sure to line up a prescription for at least a month's supply so that you can take 15-20mg a day, which seems to be what most people find effective, and not run out...
  30. josephine2

    FDA approves new type of sleep drug, Belsomra

    I thought Lunesta was so similar to a benzo that it would be just as hard. - I guess I'll find out but I know I can't cold turkey and I guess its back to - I don't know. I just hate waking up so crappy. "My own experience with tapering is not really good. I would quickly reach a dose, a...