• 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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Search results

  1. S

    low cortisol

    I have recently had blood tests which show low cortisol. The endocrinologist has said that she thought that a steroid inhaler which I use for asthma may well be the cause . I'm waiting for a synactin test .
  2. S

    Advice on acid reflux that worsens when you add acid and bitters?

    I have severe gastroparesis where doctors just kept loading me up with increasing doses of both H2 blockers and PPI's, all the while the problem getting increasingly worse. I've also been down the road where the usual suspects (Betaine HCL, apple cider vinegar, lemon juice) just make things...
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    Comment by 'Starlight' in 'How I lost 70 lb / 32 kg / 5 st while ill with (severe) ME/CFS'

    Thanks for posting this Tom. I have to begin this battle which I m dreading. But reading this has given me a sense of possibility. Thank you for going into the minute details about the issues and what you did to solve them. These are the parts which I find motivational and which I can identify...
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    CFS and applying to university- do i mention it?

    Universities have options in place to help you if they have the information about your illness.. I cannot see them using it in any way against you. You would possibly be allowed to sit exams in small room with fewer students and even take rest breaks during exams. I know of one student for whom...
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    New hopes after wisdom teeth surgery, but...what to do now?

    This is interesting. I hope your newfound wellness returns soonand just wanted to mention that I know someone who claims to have a noticeable improvement since having extractions of teeth that were getting infected at the roots. He is not by any means better but has sustained a better quality...
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    Starting Psychotherapy

    Try the psychotherapy if you are able. Use one or two sessions to find out if you get on with the therapist. Finding the right one is important. If you do find him/ her then it should be a real support for you. The right anti depressant can help if you need one. Your doctor is best to advise...
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    Prayer to Saint Jude

    Oh that You would bless me Lord, keep your hand on me and keep me from harm so that I may feel no pain. And God answered his prayer. This is the prayer of Jabez, considered to be powerful. I sometimes say this for myself and others. I hope that you find answers and relief soon Allyann. I'll...
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    Lecture by Dr Kerr to the N.I. Hope 4 ME 30th Oct on Youtube now

    It was interesting to see that chlamydia pneumonia is one of the triggers. It is also common in Lyme disease and other tick borne illnesses. It is good to see possible connections for those who are diagnosed with ME and tick borne illness. I am so delighted to see him back and still...
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    Severe progressing brain symptoms - Lyme Disease?

    It might help you to join Tick Talk Ireland. Many of the people on it have or are being treated by Dr. Lambert. You will find a lot of information and people are really helpful.
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    Has counselling helped anyone?

    I think it is a great help. Getting the right person is important,and you might have to try a few. I found it helped greatly in giving me back a sense of my own strength in dealing with significant others who are less than supportive and also with the grief I felt due to the enormous changes in...
  11. S

    10-pass Ozone in Europe - clinics, prices

    Thanks for posting this. I only read about it last night and am interested. Has anyone heard or read that these treatments are not suitable for people with auto immune illnesses.? I have been diagnosed with Lyme and ME but not with auto immune illness. However a few years ago a herbalist...
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    URGENTLY HELP NEEDED FOR SEVERE ME SUFFERER IN UK

    I'm not in the UK. I'm sorry I cannot help but I hope you will get details that will help him practically. It is awful to be so far away when someone you care about is ill and I know that you are also ill. You are a true friend to him and I hope that the situation for both of you will improve...
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    Dr. Ron Davis gets NIH grant!

    So glad to see this. So well deserved and so glad that that Ron is researching this awful illness. This might bring the changes we so badly need. Congratulations Ron and the team.
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    Andrographis (apparently) boosting NK cell function

    Thanks for that, Mary. I will give it a go. Like you my morning coffee is a must, it helps me feel alive and I'd miss it. I have read or heard Stephen Buhner singing the praises of andrographis but it is better to hear of someone who is taking it and improving. I will start low and see how I go...
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    Andrographis (apparently) boosting NK cell function

    Thanks for posting Mary. Do you have to drink lots of water and stay off coffee while you are on this these herbs. Did you have herxes with them. They sound promising and I am thinking of starting them in the hope that they might get me out of the hole I'm in for quite a while now.
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    LIVE 3 HOUR DEBATE ON ME NOW (1.30 pm) IN PARLIAMENT

    The transcript has been made available this evening it is very good. Here it is https://hansard.parliament.uk/Commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch
  17. S

    Cowden Protocol for chronic enteroviral infection?

    I have been reading old posts on cp. I was reading some from 2015 and am wondering if you have kept the improvements you had made at that time. After a long time on antibiotics for Lyme and confections I'm as bad as ever, housebound often bed. How did you make the transition from Cowden to...
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    Prof Crawley hijacks ME Awareness Week to promote FITNET

    Double treble yuk. This woman has no conscience which makes her a dangerous person. She should come with a health warning. Will she ever go away.? She wouldn' tt dare try this on adults. Vulnerable children and teens should be protected from her. I wish she would peddle her irresponsible...
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    David Tuller NEW crowd funder has 500 less donations than last year so far

    I think the Dutch community have already donated. You can look on the donor wall at crowdfund page. Click address at bottom of this post.
  20. S

    David Tuller NEW crowd funder has 500 less donations than last year so far

    David tuller has committed to doing this work even if the target is not reached. I really hope that it will be reached so that he'd have one less worry as he tries to dismantle the Pace trial and all the quackery that goes with it. I imagine that it must be very draining to keep fearlessly...
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    David Tuller NEW crowd funder has 500 less donations than last year so far

    Only 10 days left for David Tuller's crowd fund. 15 thousand to go. I had hoped that we would see someone offer to double donations by now. I've donated myself but held some back for this final run in the hope that maybe someone would do a doubling of donations like last year. I'll be donating...
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    David Tuller NEW crowd funder has 500 less donations than last year so far

    I was just reading about David Tuller's new crowdfunder. His new crowd funder has only two weeks left and has met 2/3rds of goal. However it has 500 less donors than last year. I believe that a lot of those 500 would probably donate again but might not know the campaign is running. There have to...
  23. S

    David Tuller needs our help

    Not much talk here? Is there another threead ? Right now he has reached 2/3rds of his goal but there's only 2 weeks to go and there's 500 less donors than last year. I think most of those 500 would like to contribute again if they knew the campaign was running. Is everyone remember to share on...
  24. S

    MitoQ Scam Email

    Wow thats a bit worrying. I got this too and it has the date of my purchase, my order number and my address correct. They've obviously had their database hacked then. Thank you for sharing Ema.
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    POLL: How common are sun allergies/sensitivities (to light, not heat)?

    I have mentioned it to consultants a nd been tested for lupus but tests were negative. After negative results there is no longer any interest. I just protect myself.
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    POLL: How common are sun allergies/sensitivities (to light, not heat)?

    I react so badly to sun that I'm really scared to go out in it at all. I get horrendous headache which lasts for days, joint pains with no swelling, feeling really ill and rash on my face which is not raised. Last time I spent time in sun, in a shady place, I spent a month in bed really ill with...
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    Rituximab Phase III - Negative result

    This is disappointing news,hugely so,but it is honest science ,science at its best.there was no attempt to spin anything and it can be looked at.,examined for what is of value in it and we know it is the truth. I am sad but I can take it purely because of this..I'm not even sure the impact has...
  28. S

    False hope?

    My new normal is very different to the normal of most people I know.this is a very hard place to find oneself. The post written by tiger lilea a has much truth in it. . I have reached a kind of acceptance which helps on a daily basis but I also retain a vibrant hope that there will come a day...
  29. S

    Ehlers-Danlos without hypermobility?

    Is there a treatment for EDS.? .it seems to be very hard to get any one with the expertise to diagnose..I don't know much about it but the connection with ME is recent,I think.
  30. S

    Jennifer brea- does anyone know what treatments she is doing?

    It's good to read these posts and get some idea about what has helped Jen. Would love to be able to try some of the drugs.