• 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. tinacarroll27

    How carnivore diet relates to treatment

    Just saw this on YouTube. Women with ME eating Carnivore and seen a lot of benefits.
  2. tinacarroll27

    Low neutrophils

    Hi all! Would appreciate any advice about my recent complete blood count results. Everything was normal and fine except my neutrophils, which were low. My neutrophils are 0.82 x109/L and the normal range according to the Lab is 2 - 7.5 x109/L. I do seem to catch infections easily and I take...
  3. tinacarroll27

    How well are you aging

    Thanks will do that! I think I will have to get labs done privately as I can't see my GP (I'm in the UK) doing anything I ask but I will try and see If he will investigate further at my next appointment,
  4. tinacarroll27

    How well are you aging

    Hi Just interested to see how others are aging since getting ME. I recently looked at an old photo taken 10 years ago and then looked in the mirror and didn't recognize myself. I know we all age after 10 years but this seemed so extreme. At the time of the photo, I was the healthiest I had been...
  5. tinacarroll27

    Sinus Congestion When Talking

    Yes, I get that! If I talk for too long a get very congested in the sinuses! If I talk for too long I have also crashed so I sometimes think the congestion is a warning I am overdoing it. When I first got ME I spent months having to whisper or I would crash, so I think talking for too long can...
  6. tinacarroll27

    How do you accept the negative impact on your physical appearance in a superficial world?

    I understand how you feel. I've had ME since 1987 and I was very young at the time and I noticed how bad I looked. I do feel it's worse when you are young (20s 30s) because you are supposed to look your best at those ages and I looked awful and was upset and felt I missed out on my best years...
  7. tinacarroll27

    Getting shopping delivered during the Coronavirus in uk

    I agree! They need some sort of priority system for the vulnerable for priority delivery! Yes, I think it is panic buying! The situation is a mess!! The government and supermarkets need to sort it out before vulnerable people die of starvation! I hope your parents can get their shopping sorted soon.
  8. tinacarroll27

    Getting shopping delivered during the Coronavirus in uk

    Hi, all I have been away from the forum for a while due to a massive crash that has taken me ages to recover from! At the moment I am housebound but I am up an around again in the house which is great! My big problem now is getting shopping during this coronavirus situation! When I was at my...
  9. tinacarroll27

    Allergy hell

    Thanks, I will give it a go! I use Quercetin but not tried the others. I will look into it. Thanks
  10. tinacarroll27

    Allergy hell

    At the moment I am suffering from really bad hay fever and it's making me crash all the time and also making me feel feverish. I have tried various antihistamines but I don't do well with them. Some made me very drowsy and the fatigue worse and I tried a non-drowsy antihistamine that was...
  11. tinacarroll27

    The propaganda war on chronically ill and disabled people just went up a gear

    Here is an interesting article from Steve Topple on the recent UK media response to Stanford University published new research. https://mrtopple.com/2019/04/30/the-propaganda-war-on-chronically-ill-and-disabled-people-just-went-up-a-gear/
  12. tinacarroll27

    Support group to fit for work.

    Yes I also recommend https://www.fightback4justice.co.uk/. They got me into the support group. They will help you with your appeal. You can also email or phone them as a VIP when you join and get a phone appointment with them. It's also good you got your MP involved. Keep fighting!
  13. tinacarroll27

    ESA

    Hi all! I am having a few problems with ESA . I have not had much contact with my GP for a while and I am not sure where to go for evidence and any way my GP really doesn't get ME. I had some tests done with DR Myhill including the mitochondria test and she did write me a letter for esa back in...
  14. tinacarroll27

    Brain fog got bad!

    Hi all! Hope everyone has had a happy Xmas under the circumstances of having this illness! I have noticed over the last couple of months that my cognitive abilities and brain fog has got worse. I am struggling to read and I have been making the most stupid spelling mistakes when I write. I...
  15. tinacarroll27

    Happy Xmas to everyone!

    I just want to say happy Xmas to everyone!Thanks for always been there! This forum has got me through some bad times! I am thinking of all of us this Xmas who are ill with this illness and especially those alone and in isolation! Best wishes for 2019 and hope for the future!!!! All the best Tina...
  16. tinacarroll27

    The debate tomorrow on cumulative impact of the cuts on disabled people's support.

    In case anyone is unaware there will be a debate in house of commons UK tomorrow, on the cumulative impact of the cuts on disabled people's support. There will be a protest in London at the same time. Also for those who are on twitter or Facebook you can include experiences of how welfare reform...
  17. tinacarroll27

    Role of ‘nuclear factor erythroid-derived 2’ (Nrf2)

    Yes it looks like you have less NRF2. It does say on my report: ''that DIM seems to be a compound capable of unlocking the Nrf2 promoter region.'' It also says: ''Caution: You need adequate levels of cellular glutathione if you want to work on your Nrf2 expression. Increasing Nrf2 expression...
  18. tinacarroll27

    Role of ‘nuclear factor erythroid-derived 2’ (Nrf2)

    This may be a mistake as I assumed that C was the wild type for rs10183914 but I think that is wrong. I am new to genetics, so I would ignore that bit.:confused::oops: I didn't go through 23 and me but a company in the UK https://mthfr-genetics.co.uk/DNA/index.html I am CC for rs10183914, and...
  19. tinacarroll27

    I don't know what to eat any more

    Yes I had the test and was positive. Came back high hydrogen.
  20. tinacarroll27

    I don't know what to eat any more

    I haven't tried orange squash. Might give it a go.Thanks.
  21. tinacarroll27

    I don't know what to eat any more

    No not been tested for mast cell problems. I do have allergies so it is possible.
  22. tinacarroll27

    I don't know what to eat any more

    Yes I have SIBO. I probably need to get this sorted but difficult to get the antibiotic prescribed in UK and have tried herbs but die off was horrible and made me crash! I also have the PEMT gene so don't know if this is contributing to SIBO. Might try antibiotics but GP wouldn't prescribe and...
  23. tinacarroll27

    I don't know what to eat any more

    Hi all!! I am having a real problem with food!What every I eat gives me gas, stomach pain and hours on the toilet! I am scared to eat!! At the moment I am eating fish and eggs and broccoli. I seem ok with eggs and the fish (usually salmon or some white fish like cod) without major symptoms but...
  24. tinacarroll27

    Role of ‘nuclear factor erythroid-derived 2’ (Nrf2)

    Hi not sure if anyone has mentioned this research or not or if the research is complete or on going. I found it very interesting as I have just discovered I have gene mutations on this gene; Would be interested to see the out come of this research! My genes: rs10183914 NRF2 ++...
  25. tinacarroll27

    My poll about family members with ME. I have a small sample showing a pattern. I need more data to confirm.

    I have ME, IBS, and SIBO and possible MCAS though not diagnosed as yet but I fit the criteria for MCAS. My mum had allergy and severe asthma which caused her death at 24. My gran had RA and IBS.
  26. tinacarroll27

    Lufenuron : Has anyone tried this?

    I have tried it and took it before taking Nystatin. Didn't have any major nasty side effects from it and the Nystatin was worse (lot of nausea) but I think it made the Nystatin more potent which was good because I made an improvement on the Nystatin and energy went up. Only thing that did happen...
  27. tinacarroll27

    "M.E.? What's that?"

    Most people know it as Chronic fatigue syndrome or cfs or cfs/me. If you say ME most people look blank at you and don't know what you are talking about. When I say chronic fatigue syndrome people get it but cfs has a lot of stigma attached to it I find. People then think you lazy or crazy. I...