• 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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    Practical ways of looking nice

    Hi, @IreneF (and @hellytheelephant), I wonder if lulalu.com would have something for you. Their A-cup sizes run from 30A to 38A. The prices are on the high side but I find the quality is very good.
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    Oesophageal spasm, anybody?

    Sasha, I've had these spasms occasionally. The first time, I couldn't believe the intense pain and did wonder about a heart attack. I don't know what triggers them so can't offer any advice about avoidance. But I did read that drinking something hot when you feel it start can ease the spasm...
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    Recommendation for a multivitamin containing methylfolate?

    Thank you, @ahmo, I'll explore those documents. I'm very grateful for the resources on this forum.
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    Recommendation for a multivitamin containing methylfolate?

    I appreciate the responses! @helen1 , AOR is a brand I'd never heard of, so thank you for that reference. @acer2000, I was familiar with Pure Encapsulations as a brand but had missed their multivitamin array; I see they offer several different formulations, which I will look at more closely...
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    Recommendation for a multivitamin containing methylfolate?

    I'd like to switch from a multivitamin containing folic acid to one that contains methylfolate but am not sure which brands are reliable. Can anyone offer an opinion on Seeking Health, Life Extension, and/or Doctor's Best? I've recently been diagnosed as having one copy of the C677T mutation...
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    Started Valtrex, then on to Naltrexone -- should I not get my hopes up?

    Piping in about LDN - I've been taking it since 2012 and consider it extremely helpful in improving sleep, mood, and energy. Heeding advice on this site, I started low, at 0.2 mg (even at that dose I had unpleasant side effects of insomnia and headache for 2 weeks) and worked my way up to 1.5 mg...
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    My visit to Dr Susan Levine NYC

    Hi @joanne218 - if I may butt in on the LDN dosing-discussion, I also started out at 0.25 mg (in liquid form) and over a period of weeks and then months worked my way up 1.5 mg/day. Even at 0.25 mg I had unpleasant symptoms - insomnia and headache - but I was prepared for these (thanks to this...
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    Where to order Imunovir Now???

    With a prescription, Imunovir is available from New Zealand Medical and Scientific. Excellent customer service. Website: www.nzms.co.nz
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    What is current Immunovir Dosing?

    I alternate weeks of 2 tablets/day and 3 tablets/day, with weekends off, a schedule I've been on for a couple of years. Looking ahead, the plan is to consider maintaining that routine but on a schedule of 3 months on, 3 months off.
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    The Synergy Trial: Ritalin and Micronutrients

    At the suggestion of my physician, I've started a 3-month trial of the supplement, which is K-Pax Immune Support. In the past, I'd tried dosing myself with most of the individual ingredients but was only guessing at the proper dosages and after a while gave that effort up. So I'm glad to have...
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    Muscle Weakness

    Moxie, I'm grateful to you for starting this thread and to all who have posted. I have also felt very alone with this symptom! I'll add my experiences. Muscle weakness and lack of stamina were my first symptoms of CFS. Over the course of 4 weeks in 2010, I went from noticing my arm getting...
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    What should I expect from immunovir (side effects)?

    I've been taking Imunovir since the beginning of July, now alternating weeks of 2 tablets/day and 4 tablets/day, with weekends off. It has made me more tired and has caused more - and more severe - headache. In the early days it made me very weepy. I second the recommendation to start slow...
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    New Rituxan blog

    dsdmom, Thank you so much for blogging about your experience.
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    Fibromyalgia Trial Shows Promise...For Chronic Fatigue Syndrome? Mast Cells and Ketiotifen in FM an

    I've been taking ketotifen fumerate in the form of 1 mg. tablets since 2000, when I developed chronic idiopathic uritcaria and angioedema (caused by degranulating mast cells). It keeps the symptoms in check but does not completely eliminate them. I developed CFS/ME in 2010 while on a daily 2...
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    Petition linked to the advocacy letter to Sebelius - shouldn't we all sign?

    I also sent out an email to family and friends, as well as signing it myself, of course. I look at the tally of signatures daily and, frankly, I'm surprised that it hasn't climbed more rapidly.
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    Wheelchair/Mobility Scooter Thread

    Indoor/ Outdoor push chair For a two-month stay in Rome this spring, I bought an Adaptive Star Lassen push chair - http://www.adaptivestar.com/item.html?itemid=33 At home in the U.S., I generally don't need a wheel chair, as I can walk short distances and otherwise can go by car. However...
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    Mount Sinai ME/CFS Center Expects to Recruit Soon for Many-Faceted Exertion Physiology Study

    Gamboa, it was very generous of you to undergo this effort. Thank you.
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    ME/CFS specialist in Germany?

    Thank you very much for these leads, Mellster. I will pass them along straightaway.
  19. C

    ME/CFS specialist in Germany?

    A friend in Germany is seeking help for a relative (a young woman) who has been flattened by what sounds like ME/CFS and is getting no help from her local physician (in a town near Munich). Does anyone know of an ME/CFS specialist in Germany? Thanks!
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    Doctor in WI?

    There are some Milwaukee contacts listed on the website of the WISCONSIN ME/CFS ASSOCIATION under "Contact Us" - http://www.wicfs-me.org/wicfs1.htm They may be able to give you some leads. Good luck!
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    Low dose Naltrexone

    Thanks, Penny. It's very good to hear that the "low-low" dose is helping you. And I appreciate the reinforcement of my sense that there's no good reason to push toward a higher dose at this point.
  22. C

    Low dose Naltrexone

    Heartfelt thanks to everyone who has posted their experiences on this thread. I got my LDN prescription 3 weeks ago, and thanks to you knew to ask for a liquid formulation so that I could "start low and go slow." I started at 0.3 mg. and have worked my way up to 0.75 mg. Again thanks to you...
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    LDN, what is it for?

    I was recently prescribed LDN for sleep, specifically to help induce stage 3 sleep. The initial dose was to be 1.5 mg, and over a couple of months I was to work up to 4.5 mg. Since I have a history of being sensitive to drugs, I wanted to be cautious, so started at 0.3 mg, and after 3 weeks...
  24. C

    Feel better on Prednisone?

    Nielk, I was so interested to see this post. Coincidentally, I was on prednisone for all of December because of a severe allergic reaction, starting at 60 mg/day, then decreasing gradually to zero over the course of the month. On 60, 40, and 30 mg. I felt hellish, started to feel more human at...
  25. C

    HELP! Needed RE: RETINAL DETACHMENT or TEAR

    Hi Dreambirdie, I had something similar happen to me last year, and, although I was quite alarmed when it occurred, it turned out not to be serious: rather than a retinal detachment or tear, it was a vitreous detachment. My symptoms were a sudden appearance of new floaters and flashing...
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    Sleeping for the first time in my life - Amitriptyline

    So interesting - I wish I could understand all of the science here, but the above paragraphs in particular caught my eye, especially the mention of "well being" and "motivation," things I experienced after my first dose of amitriptyline for the first time in ages . I loved it. Then everything...
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    what is causing adverse reactions to SSRI class of drugs?

    Nobody could have been more surprised than I was that I developed serotonin syndrome (clinical diagnosis totally solid), given the tiny dose I was on. I had been hesitant to start an antidepressant but reckoned that nothing bad could possibly happen. The other drug I take is ketotifen, an...
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    Sleeping for the first time in my life - Amitriptyline

    According to The New England Journal of Medicine, serotonin syndrome is "not rare" but the diagnosis is often missed because it has so many presenting symptoms, some of which may seem inconsequential, and because many clinicians are not aware of the syndrome. I was not taking any other...
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    Sleeping for the first time in my life - Amitriptyline

    Serotonin syndrome My short and initially promising trial of low-dose amitriptyline came to a halt with a trip to the emergency room yesterday. My drug history along with my mental, autonomic and muscle symptoms led straight to a diagnosis of serotonin syndrome. I'd never heard of it - info...
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    what is causing adverse reactions to SSRI class of drugs?

    I wish I'd come across this thread before starting my trial of low-dose amitriptyline. After only 4 days on .25 mg. a day (I cut a 10 mg. tablet in quarters), I was in the emergency room with serotonin syndrome. I had the full range of mental, autonomic and muscle symptioms but fortunately no...