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

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    Ruggiero Speaking & Instruction For MAF 314 - Kansas October 5-6

    Dr R says that MAF314 is being used in Australia. Is it Dr Lewis? Does anyone know anything about the Australian trials of it?
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    Ruggiero Speaking & Instruction For MAF 314 - Kansas October 5-6

    Did you see this re dr R, don't know too much but it is interesting, Professor Marco Ruggiero was at the Riordan Clinic in Wichita, KS on October 6, 2012, giving a lecture on MAF 314. MAF 314 is the super -probiotic substance that he and his colleagues developed at the University of Florence...
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    Immunovir, of interest to aussies

    Are you really convinced they are the same? Knowing how seriously the French pharmacies are and how slack the Greek ones are is it taking a gamble? Can you please give me the contact for the Greek one so I can look into it please. Thanks for the advice
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    Immunovir, of interest to aussies

    Imunovir contd, the box you have shows is like mine where newport pharmaceuticals Ireland is the licensee and Sanofi Winthrop ind in France the manufacturer. There is a problem in France at the moment and in NZ there are no packets which has me in a relapse perhaps caused by this. I did have a...
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    Heart monitor advice needed.

    Hello 'waiting', the Polar ones i saw in a shop said they had to be sent away for changing, maybe New Zealand is behind in its available watches. Also does the Polar FT7 have a range down to 55? the polar ones i saw, with a hopeless shop assistant, started at 80 she said. I came away more...
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    Heart monitor advice needed.

    I have decided to wear a heart monitor so that I can keep my heart beat low, using it to monitor my exercise, hopefully stopping PEM relapses. So far the ones I've seen only go as low as 80, but I need one that goes lower as I'm usually in the low 70's. Has anyone found one that will work for me?
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    Immunovir, of interest to aussies

    How do you know that what you have ordered is actually the same as imunovir, which is inosine pranobex. Is this a reputable brand as there is a problem getting the true imunovir which is made in France by Sanofi Winthrop industries?
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    Low dose Naltrexone

    I have been on it for 4 months and am definitely stronger and better. Who knows if it is the cause but I'm feeling good, no relapses, but still taking it slowly after being bed and house bound after other improvements, leading to over doing it and relapsing badly - for years -I'm learning from...
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    Anyone improve from bed/housebound to high level of functionality?

    After 20 years of trying this and that, one gets rather cynical about new alternative therapies, not mentioned at the conferences. I have decided to go the medical way - as proposed by Dr Klimas and Dr Vallings and use immune modulators - imunovir and LDN - plus sub lingual vit B12 plus various...
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    Anyone improve from bed/housebound to high level of functionality?

    There is a list somewhere on this blog of things people found helped. Rest and pacing was at the top - and appears to be so with any patient survey. I would be very hesitant to do anything that involves exercise, there has been a lot of media attention on the usefulness of graduated exercise...
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    Anyone improve from bed/housebound to high level of functionality?

    I got sick 1992 with a bad virus, not EBV, was bed/house bound for 10 years 1 -2, then slowly improved to 3, Started taking imunovir 2004 and after 18 months was back to 10. back to the gym seemed to be completely normal. Then 2009 had a big relapse ( caused I think from stress) which has sent...
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    getting worse from imunovir?

    6 years ago I started imunovir and after 18 months, taking 2 tabs 3x perday I became normal. I had been extremely ill but when I started had improved quite a bit, still not able to look after myself. For 5 years I lead a normal life - to the gym etc, exercise relapses had been my main symptom...
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    Low dose Naltrexone

    I have been on LDN now for 12 weeks. I had problems at the start with sleep so cut the dose down to .5 taken in the morning and very slowly increased to 4.5 and then moved it up until now I'm taking it at night(now for a week) and am sleeping really well. So it is important not to give up due to...
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    High Pulse - over 100 at rest

    Yes when I was really sick my pulse rate was in the hundreds. Now I'm better it is back to 70 - 80. However I am taking a prescrition drug called sotalol. I was also having a racing heart - also one of my ME/CFs symptoms (usually associated with a relapse) and finally they took me to hospital...
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    3 Things that Help the Most!!

    I started in LDN but had bad sleep problems, waking up every 2 hours. I have cut it progressively down to now be at .5 mg. Taken in the morning. But they say you should take it at night. what do those who have had success on it believe about the time you must take it?
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    Started Equilibrant...

    I tried equalibrant too - took it very slowly, increasing slowly, but suddenly after a month of slowly increasing to full dose per day - had a terrible pain and found my kidneys were reacting really badly to it - so be careful - it took me weeks to get my kidneys back to normal - it must be...
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    lightning process/gupta training

    Yes it costs me - NZ$376 for 200tabs. I take 6 per day with a break often over the weekend. Nancy klimas says it is good to have a break, pulsing I think they call it. I do know other people have got it cheaper - a friend got some in France a lot cheaper and over the internet - however I've...
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    lightning process/gupta training

    Remission and type of illness, Gupta I too have been sick for 19 years after a viral infection, not E B. For the first 10 years I was extremely ill, hardly able to walk and relapsed after exercise, even very small exercise. This relapse could last for months and years. The next couple of years...
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    Have you had a remission?

    I was very sick for 15 years after a bad flu. Went up and down a bit, mainly resting on the bed, out to town in a wheelchair on good days,looked after by family, then did start to improve. then I started taking imunovir- the antiviral also called isoprinosine. Came 100% well after 16 months and...
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    Wheelchair for people with CFS

    I am also one who uses a wc for going out. It means I can enjoy the experience, get some fresh air and feel part of the human race. My husband takes me to the movies and out for coffee - things I couldn't do if I wasn't sitting in a wchair. I don't use it at home but also have a mobility scooter...
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    (Not ME/CFS-specific) "Tricyclic antidepressants 'raise cardiovascular risk'"

    We are supposed to be taking them in tiny doses - ie 10mg while a proper dose for depression is more like 45 - 50mg. Certainly the 10 mg gives me a great sleep - and is generally great for me. Amytriptyline saved my life as sleeping probs were terrible - I went up to 30mg at the very worst time...
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    Confused about b12

    Dr Klimas likes to use the vitB12 under the tongue rather that as an injection. She mentioned something about too much ????? with the injection. I'm not sure she was talking about the hydroc... one. sorry to be so vague maybe someone else knows what she was saying?
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    Article: Dr. Friedberg Interview - Living Skillfully and Making a Difference With ME/

    I agree that meditation,removal of stress, pacing, positive thinking etc is important in keeping one at the glass half full, life style or even the journey towards normality. All good things, but the idea that we got sick because we were all stressed and have an A type personality I think is...
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    Has anyone tried hyperbaric Oxigen therapy?

    My CFS Dr says she has had some patients who have tried it and have become a lot worse. So I'd be careful - maybe this is why Dr Cheyney is not advising it.
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    Article: The Stevens Protocol - Repeat Exercise Testing at the Pacific Fatigue Lab: P

    Not all CFSers have the same level of PEM. for some they can exercise and feel lousy for a few days but it does no longterm problems and others. like me, it can cause relapses lasting for more than 6 months or even years. I don't understand it but know that there is no way I'd ever let myself...
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    Nancy Klimas Speaking Tour in New Zealand -Agenda

    Yes Tauranga is doing a video and I think one other centre. Also Hamilton may do one. the Auckland and Hamilton ones are open to the public, so all welcome.
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    Article: Breaking Out!

    It would be good to have a gathering of all the info from patients and researchers on one place - this seems a good thread for it to carry on. I looked on the internet and there is very little on it. Does anyone have any research statistics on Ampligen? I am so pleased for Kevin - people have...
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    The State of Play ?

    Yes that is definitely true for me too. I did a little bit too much 4 months ago and here I am still not as good as I was then. I am very careful to not do too much and wonder too about those brave people who will exercise for research - I certainly couldn't.
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    rest,rest,rest!?

    Unfortunately we have different exercise ability and some of us are very prone to relapse after exercise and those who can exercise without too much effect cannot understand those of us who really can't do much. We have to stop way before we feel tired as sickofcfs says. If I do too much I...