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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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    Marshall Protocol

    Fejal, Dr W (please just use initials rather than full name, as LLMDs sometimes get hounded by the authorities) is a Lyme-literate doctor in the north of England. He uses both conventional and natural antibiotics (such as Samento) to treat chronic bacterial infections (spirochetes and...
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    Marshall Protocol

    Evidence please. As you say "can type anything on a pc screen, doesn't make it so" I am a patient of Dr W (it is good form to refer LLMDs by their initial, as I'm sure you realise), and he has never claimed to cure anything. He does however treat bacterial infections including "lyme-like...
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    Olympic Swimmer

    I don't think it's fair of us to second-guess what this young woman has- I spend years with a mild(ish) form of ME/ CFS, and tried to push through it because I was advised by doctors to keep working and exercise, no matter what kind of pain I was in! Eventually of course, my body broke down and...
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    Difference between sudden and gradual onset XMRV

    Rusty, apart from the glandular fever you have just described my life between the ages of 10-25, when I was finally given a "diagnosis" of ME/ CFS. I was also a very bright child,and was moved forward a year in primary school because I found the work in my class too easy. Soon after the brain...
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    Benefits and risks of long-term sleep meds

    Thanks for all the replies folks, I have decided to continue with Zoplicone long-term. I have found a source other than my GP, the tablets seem legit, (been taking them last few nights, slept well, feel great :Retro biggrin:). I definitely feel that the benefits of a deep refreshing sleep, which...
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    Benefits and risks of long-term sleep meds

    After years of insomnia (problems getting to sleep rather than staying asleep), my GP has finally prescribed something which knocks me out and gives me a full refreshing night's sleep (Zopiclone). :Retro biggrin: However he has refused to give me more than a month's worth, and now I've run out...
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    Hair Loss

    Since late childhood/ early teens I have seemed to lose far more hair than other girls/ women- when brushing, washing, or just generally. This is also when I believe I first had mild symptoms of ME/CFS, although it was not diagnosed for many years. It comes out in many strands, rather than...
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    Why Dont Doctors Listen to Women?

    I don't think it's a problem that is specific to women- most doctors don't listen, full stop. There have been many occasions where I've been describing a problem to a GP and he/ she has begun talking over me before I can finish the sentence. Why is actually listening to the patient so low on...
  9. D

    Low dose Naltrexone

    Hi Jenny, Yes I'm with Dr AW, he is prescribing LDN to a lot of people now. On another forum I visit, results for LDN for ME/ CFS seem to be quite mixed. Some people are seeeing dramatic improvements, some minor improvements and others no change. A few people are unable to tolerate it. Do...
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    Low dose Naltrexone

    That's interesting- I will look into getting some vitamin D when I order my next batch of supplements... The abx I am on for a couple of bacterial infections which were diagnosed privately using dark field microscopy. At the moment I'm taking Clarithromycin, but it changes every few months...
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    Low dose Naltrexone

    Hi Diva, No I didn't make it to the Glasgow conference unfortunately. I will check out your notes though. I have heard vague rumours about using vitamin D with LDN, but nothing tangible. I don't take it myself. I've been on abx for about 10 months, and LDN for 4 months. I started on a...
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    Low dose Naltrexone

    I'd also like to echo the point about different types of tiredness- I too still get tired, but it's a more "normal" tired, almost pleasantly tired in fact. Not at all like the bone-aching "ill" tiredness I used to get before starting abx and LDN. I still need a lot of rest, especially if I have...
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    Mitochondrial damage and viral infection different symptoms in different people

    How do you find out if you have mitochondrial disease? Is there any treatment available? Is mitochondrial disease related to the mitochondrial dysfunction that Dr Myhill writes about?
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    Low dose Naltrexone

    Hi Oerganix, My antibiotic protocol has so far consisted of many months of amoxicillin, a month of azithromycin, and a month of clarithromycin, which I am still taking. The doctor I am being treated by seems to prescribe slightly different protocols for different people. I know some people...
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    Low dose Naltrexone

    Hi folks, I'm new to this thread but thought I'd add my experience with LDN. I have had ME/ CFS for many years, in a mild/ moderate form with lots of remissions and relapses, but it was misdiagnosed as various other things until 2 years ago, when I had a horrendous crash. That is when I got the...
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    WPI UK XMRV testing/study

    Thankyou Greggory- it is so heartwarming to experience the support on this forum, from all over the world, the top-notch scientific and research info, and of course the great humour! You are an extraordinary group of people who all deserve so much better than the crappy hand life has dealt you...
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    LDN Conference Glasgow 24th April 2010 (focused on CFS and FM)

    Thanks Diva. :thumbs up: I will post on the LDN thread soon...
  18. D

    LDN Conference Glasgow 24th April 2010 (focused on CFS and FM)

    Thanks for posting this- It sounds very interesting. I have been on LDN (amongst other things) for a couple of months and am seeing big improvements. I would love to attend, health and finances permitting- does anyone know whether there is a fee? I couldn't find anything about cost on the link.
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    WPI UK XMRV testing/study

    Know what? By "fingers crossed you will make it", I meant "I hope you will make it", if that's what you're referring to... Damn this fogbrain.
  20. D

    WPI UK XMRV testing/study

    No problem Adam, fingers crossed you will make it into this round of testing and can get it done sooner rather than later. The Wessley stuff both depresses and enrages me no end. I'm also in Sheffield, small world huh?
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    WPI UK XMRV testing/study

    To all those who didn't make it into this study (I was too late), I received this email from Dr Mikovits: Dear (name) We may very soon have a very high throughput sensitive test for XMRV where we could easily do 200 in a week! Thank you for your patience and kind regards Judy 200...
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    Low Dose Naltrexone - Discussion with Prime Minister

    This is great news. I recently added LDN to my long-term antibiotics (private prescription) and it seems to be having a good effect already. I even went out for a little jog (well, jog/ walk) last week! :Retro eek: So far it hasn't backfired, fingers crossed... Any "proper" exercise would have...
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    You Won't Believe What Else King's College Researchers Can't Find!

    Are they 1000% sure? :winking:
  24. D

    Role of testosterone in ME/CFS

    What is considered a normal testosterone level for women? I had mine tested a while ago- 2.3 nmol/L, which my GP seemed to think was ok. I tried googling but was too foggy-headed to understand the different units! I've been on LDN for a couple of weeks, and have noticed increases in energy...
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    The Fight is on...Imperial College XMRV Study

    Another Sheffielder here! Strange huh? I've never had any luck with the NHS so am now seeing a LLMD privately to treat various bacterial nasties.
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    Lyme Disease and XMRV

    Thanks Rebecca. I know of at one borreliosis patient who was negative, but has not yet had the antibody test. I guess we'lll just have to wait and see... I hope any other lymies who have been tested will post their results on this thread, if they feel comfortable doing so. I'm really...
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    Lyme Disease and XMRV

    Does anyone know if any Lyme patients have been tested for XMRV? If so what were the results? I'm intrigued by the possibility of having both, and how likely it is. Were Lyme sufferers excluded from the original WPI CFS studies?