• 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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    Seeing Dr Powell: anyone know about transport in the Sacramento Area

    Going to see Dr. Powel: anyone familiar with Transport options in Scacremnto Hi Everyone: I have an appointment to see Dr. Michael Powell in Sacramento CA this Thursday. I actually read about Dr. Powell on another website cpnhelp.org which provides information and discussion forums on chlamydia...
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    I can't afford living on the east coast

    Hi Vincent: Would somewhere like the Portland Oregon metro area be a possibility for you? There's very little snow in winter although there is plenty of rain of course. The cost of living is average to just below average compared with the rest of the country. It's a small city and quiet...
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    What and how to cook, when you can't cook

    Vincent: I can really sympathise with your situation. I can't tell you the number of days I've had in the last couple of years when the thought of cooking a meal and cleaning up afterwards has just been overwhelming but eating out wasn't an option because we just couldn't afford it. I don't...
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    Making your own electrolyte mix

    Water by itself doesn't work very well for me in large quantaties either, especially during the day. So I drink a homemade lemonade to supplement my salt as I need several teaspoons a day in order to retain fluid and maintain my blood pressure. I enjoy the taste and it does the trick for me...
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    what natural to use for pain when cant take medications at times

    Hi hurtingallthetimet: I've heard a lot of good things about Curamine helping FM pain. I'm posting a link to a description and list of ingredients so you can take a look and see if it's something you want to try. Hope you get some relief soon...
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    Paralympics for people with ME?

    Currer: That's exactly the position I'm in. I get disability income because of my blindness not because I have CFS, even though I've been blind my entire life and have worked when an employer has been willing to give me a chance. It's only since I got CFS that I've been physically unable to...
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    Paralympics for people with ME?

    Hi: Just wanted to add my own thoughts as someone ILL with CFS since 2006 and with a disability in the classic sense, (I've been blind since birth and have no usable sight). They are two very very different things. My blindness is a specific lack, incapacity, something that isn't there for me...
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    Paralympics for people with ME?

    Hi: Just wanted to add my own thoughts as someone ILL with CFS since 2006 and with a disability in the classic sense, (I've been blind since birth and have no usable sight). They are two very very different things. My blindness is a specific lack, incapacity, something that isn't there for me...
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    nk function increased 5 months after immunovir use stopped

    Hi Heapsreal: Yes I do try to spread my dose out and take 2 pills with breakfast, 2 with lunch and 2 with dinner. Sometimes I forget my lunchtime dose and when this happens I try to take it as soon as possible and move my dinnertime dose to bedtime. I did feel really bad on this medication...
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    nk function increased 5 months after immunovir use stopped

    Hi:It seems like there are many variations in how doctors prescribe this drug for CFS. I take six pills a day on odd weeks and 3 pills a day on even ones. But I have a month off every two months.
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    Who's trying to get to bed and get up earlier??

    Hi: I haven't posted for a long time because the new upgraded website won't work with my screen reading software. My husband is actually posting this for me because I can't post from my machine. CACFS: I can really sympathize with your struggle to get up early and establish a regular routine...
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    ayone ever get better after being very sick?

    Hi Hurting: Sorry you are having such a rough time. A lot of us get to the point where we want to just give up on life with this illness. Ive certanly felt that way. Because I am also blind I began to wonder what point there would be to life with CFS in addition to my other disability. But I am...
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    Natural sleep remedies

    problems. In the years leading up to the onset of my illness I had great difficulty staying asleep and would lie awake for half the night, especially in the second half of my menstrual cycle. When I started on hormone supplementation my sleep improved dramatically. But in the last year it has...
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    LDN, what is it for?

    Hi Ocean: I'm hoping this message will post as I'm experimenting with Firefox to see if it will work any better with this website for me. LDN stands for low dose Naltrexen. At higher doses between 50 and 100 mg, Naltrexen. Naltrexen is used to to treat dependence on opiates. Butat very...
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    What would YOU say?

    1. A number of cost-effective treatments exist which have greatly improve quality of life for some patients with CFS/ME. 2. There is a widespread misconception among the medical community that CFS is a Psychological condition which can be cured through exercise and positive thinking. 3...
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    My results Fungus in blood

    Ive read somewhere that most people with CFS have chronic fungal/candida infections because of the immune dysfunction. About a year after my illness started I had some kind of candida antibody test which was positive. However the doctor Im seeing now does not believe you need to test for candida...
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    Anyone tried Bruce Campbell's course?

    Hi Ocean: I don't have experience with any of Bruce Camble's courses so this is just my personal opinion. But I was interested in the link you posted and so took a look at the course outline and the library of articles. Maybe I'm wrong but I don't get the impression that there would be a lot...
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    Feeling COLD?!

    I used to have problems feeling cold and having cold extremities because my body temperature was two degrees below normal and I had low blood pressure. The Two things which have fixed this problem for me are high doses of T3 and taking Pregnenolone. I found out that I needed high doeses of T3...
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    Comment by 'health_seeker' in 'Translocator protein test results'

    Hi Justy: I've just read your blog and wanted to say hi. It sounds like you've got a lot on your plate. I think even a healthy person would find that report overwhelming. Hope you have some good support to help get you through this. Take care, Health_seeker
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    getting worse from imunovir?

    Niall: I wish you the very best of results and really hope that you get some lasting improvement on Ampligen.
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    Good CFS doctors/clinics in or near Sacramento, CA?

    My screen reading program doesn't work reliably when I am writing and editing posts so my last post got submitted before I had pasted the link. Here it is. http://www.fibroandfatigue.com/meet-the-doctors.html
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    Good CFS doctors/clinics in or near Sacramento, CA?

    a possible resource Hi LBS: I thought I'd pass along a possible resource in your search for a CFS doctor. Maybe you've already seen this page. It lists all the CFS and FM treatment centers in the US along with a brief bio of all of their doctors -- where they studied, their specialty...
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    HELP! Needed RE: RETINAL DETACHMENT or TEAR

    Hi Dreambirdie: I just came across this thread right now and wanted to say that I really hope that the visit with the eye doctor went well and that you got good news. But if it didn't go well and you need someone to talk to, feel free to contact me on or off the forum. I have been blind since...
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    getting worse from imunovir?

    Hi Niall: Thanks for posting. This is good information. I think your theory of the body becoming resistant to the immune modulating mechanism with prolonged use makes a lot of sense. Sadly there are just no magic bullets here for us are there. I wonder how long I will feel well before my...
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    getting worse from imunovir?

    Hi Melster: I absolutely agree with you. I don't think I would be doing as well if I was just relying on Immunovir to modulate my immune system. I'm also using Thymic Protein and I'm taking generic Diflacon to knock out systemic fungal/yeast infection which I think is causing a lot of my...
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    Which CFS Symptom Do You Hate the Most?

    I hate PEM. I feel betrayed by my body because I thought I had the energy to do whatever it was I did. I feel depressed because I'm taking one step forward and two steps back.
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    Good days: Hate to go to bed?

    Hi LBS: I know what you mean. I started having those days maybe a month ago. For me it's a sign that I'm getting better but maybe it's something different for you. Have you always had these days? are there times when they are more or less frequent? Have you thought of making a note of what...
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    getting worse from imunovir?

    I would say between 24 and 48 hours.
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    Wrong Diagnosis Site - Fredd's Protocol

    Hi Merylg: If you don't mind me asking what is your sodium level like? Do you have problems retaining fluids? I find that if I don't take in enough salt during the day I'm up all night emptying my bladder and by the morning I'm dehydrated. If I take 3 teaspoons of sea salt throughout the day...
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    getting worse from imunovir?

    Hi: Just wanted to chime in with my experience taking Immunovir. Right now after 4 months I'm doing really really well on it and am feeling better than I have in years. However I would say my first ten weeks were pretty awful and my symptoms definitely got much worse. In addition to increased...