• 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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  1. Aquila

    Brain fog headaches linked to sinus problems?

    Thanks for your reply Oberon. I'm sorry to hear you've had no luck in improving it. It's interesting to hear about your CT scan. I think something triggers my sinuses to become inflamed because sinus rinses help and my face becomes visibly swollen but the trigger seems to be mental activity...
  2. Aquila

    Brain fog headaches linked to sinus problems?

    I have had problems with brain fog headaches for 15 years and wondered if anybody could help me understand what the mechanisms in causing this might be. My main triggers are reading for more than 30mins or particularly listening to a podcast/ audiobook for a similar amount of time. I'm writing...
  3. Aquila

    Do Antihistamines improve your OI?

    This is one of the papers which talks about antihistamines helping. http://europace.oxfordjournals.org/content/13/3/306.full#ref-4 http://hyper.ahajournals.org/content/45/3/385.abstract?ijkey=74059d9e6f7313023e679af5223908c9a4acdbe4&keytype2=tf_ipsecsha
  4. Aquila

    Do Antihistamines improve your OI?

    I've read a lot about there being a third type of pots which is due to mast cell activation. It is possible that this type of pots would be helped by antihistamines. Benadryl (diphenhydramine) helps my Pots significantly. I've added a couple of links to papers in my next post.
  5. Aquila

    Quick Summary of diagnosis and treatment for Mast Cell Disorders -Have I got this right?

    Thankyou! I'm looking at all your links in your footer it looks really helpful.
  6. Aquila

    MCS what do i do? and are EPD injections worth it?

    Thanks sian, yes I've got a good air purifier and have got a fir sauna but I'm way too ill to use it unfortunately. And yeh I do have to move as I live with my parents who look after me and they are moving so not much choice sadly!
  7. Aquila

    MCS what do i do? and are EPD injections worth it?

    I have bad MCS and I'm soon moving to a house which I'm allergic to. I'm looking at ways to eliminate chemicals that I'm sensitive to in the house. (I have no choice but to move there) but I am really worried about it as last time I was in a place where i struggled with chemicals/ allergens I...
  8. Aquila

    Quick Summary of diagnosis and treatment for Mast Cell Disorders -Have I got this right?

    Does anyone know where you can get the 24-hour urinary N-methylhistamine and 24-hour urinary Prostaglandin D2 privately in the UK?
  9. Aquila

    UK Commons’ motion to annul the Employment and Support Allowance regulations

    This is from the ME association and I thought would be worth putting here. This is the link http://www.meassociation.org.uk/?p=14231. I've copied the article below. The first couple of partagraphs explain it. The rest is a letter to send to your MP. Commons’ motion to annul the Employment...
  10. Aquila

    In Memory of Rich Van Konynenburg.

    Very sad to hear this. He was so generous with his time and knoledge. Condolences to Dianna and his family. Huge loss.
  11. Aquila

    FDA Will Review Ampligen For Chronic Fatigue Syndrome

    Not sure if this is news but I'll post it just in case.. http://www.nasdaq.com/article/hemispherx-biopharma-says-fda-will-review-ampligen-for-chronic-fatigue-syndrome-20120924-00364 Hemispherx Biopharma Says FDA Will Review Ampligen For Chronic Fatigue Syndrome (RTTNews.com) - Hemispherx...
  12. Aquila

    Seeking 23andme input to track down ME/CFS genetic predisposition

    I'm rs12737233 TT rs3750834 AG rs11135434 CT
  13. Aquila

    Treating autism with dietary supplements

    I Thought this may be of interest to those taking amino acids. This is an article which was in the guardian today written by somebody who I have alot of respect for. I don't know much about taking Amino acids for M.E. but it seems that it could be relevent...
  14. Aquila

    Clinical Trial Results of NeuroProtek in ASD

    That's interested sushi and Natasa. I've read before that all Bioflavinoids are salicylates. Has anyone else had reactions to it? I actually rarely have any reaction to supplements.
  15. Aquila

    Clinical Trial Results of NeuroProtek in ASD

    I bought some of this and it actually seemed to make me worse. I do go up and down so I'll stick with it for a bit but I've read that people who are sensitive to salicylates are very sensitive to quercetin. I couldn't find much more about it though. I don't actally know whether I'm allergic to...
  16. Aquila

    Update on the ME/CFS Tissue and Post Mortem Tissue Bank | ME Association | 24 August 2012

    http://www.meassociation.org.uk/?p=12558 This is in an interesting article posted by the Me association. It's quite short so I will copy and paste below I hope that's ok. The MEA receives regular queries about the initiative to set up a formal UK tissue and post-mortem tissue bank where...
  17. Aquila

    Clinical Trial Results of NeuroProtek in ASD

    This looks good but very expensive. 8 caps a day for average weight at 50p each is over 1000 pounds a year. Has anybody tried it?
  18. Aquila

    Child/Adolescent Siblings of ME/CFS - Participants needed UK

    Good luck it seems like your getting a bit of a hard time but any research to help caring for people with ME and the people around them is useful. I know siblings of people who have had M.E. severly who have had found it very hard to cope and I also know siblings who made their siblings life who...
  19. Aquila

    Child/Adolescent Siblings of ME/CFS - Participants needed UK

    If you want to find people of that age you should contact ayme it has large membership of people with me of that age it also has a large closed forum.
  20. Aquila

    Orthostatic Intolerance which isn't POTS

    Hey so I've done the poor mans pots tests a few times and took a few general readings of my blood pressure an pulse. Sitting up my blood pressure is about 110, 70 with pulse 75. Lying down on a good day it's 118, 80, 65 but on a bad day which is often it's the same as sitting. Standing depends...
  21. Aquila

    Dr Myhill publishes second paper

    Thanks for that paper Barbc that's really interesting. Surely if that's true a fault in oxygen transport shouldn't be too hard to find. My TIBC is very low I wondered if the two are correlated I have a look. I had a look at the ME assoication FB page and his comments suggest he is looking to...
  22. Aquila

    Dr Myhill publishes second paper

    Was this tested for blinded? Surely if it was it can't be dismissed as quickly as Charles shepherd suggest. A blood test which can separate healthy people from pwme is surely incredibly useful. But it does need to be replicated by an independent lab. It seems sad to dismiss it particularly as...
  23. Aquila

    Dr Myhill publishes second paper

    Really interesting. Do you think the medical community will take notice of this? Do you think anyone will be interested enough to try and replicate the results? I couldn't see any comments on the site. I saw it was peer reviewed. I'm not sure if this means nobody reviewed it or we just can't see...
  24. Aquila

    Orthostatic Intolerance which isn't POTS

    Interesting Florinef didn't help you Allyson. I'm not well enough to leave the house unless I really need to so Aqua aerobics would be beyond me. I will look up licorice. Why does it help? I seem to have DI when I over do it but not at other times? I don't know if that's possible my 24 hour...
  25. Aquila

    Orthostatic Intolerance which isn't POTS

    Thanks this is all really interesting I'm going to look it all up properly hopefully tomorrow because classicly I can't sit up well today. Just Briefly I don't think I have EDS as I don't have any of the other symptoms. I have quite high calcium already so I would be a bit worried abou takiking...
  26. Aquila

    Orthostatic Intolerance which isn't POTS

    I just wondered if anybody had improved their Orthostatic Intolerance which isn't POTS. It is one of my biggest symtoms of ME and was one of my first symptoms at least 14 years ago. My cognitive functions are massively worse when sitting up or standing and feel very dizzy like theirs no blood in...
  27. Aquila

    Optimum Health Clinic - anyone used or have an opinion?

    I did this. It’s basically NLP plus nutritional advice. The NLP is done well enough, it’s less cultish than the lightning process but still a lot more expensive than say the Gupta process but you do get somone to talk you through it. I know many people who have been seemingly cured by NLP but...
  28. Aquila

    Any Thoughts about these blood tests?

    I find out my blood tests results in a week but in the mean time I just found some more tests I had done ages ago. I didn't feel like I had that many tests but over so many years they add up although 90% are from one batch. Anyway these are the ones I had done as I can no longer edit the orginal...
  29. Aquila

    Any Thoughts about these blood tests?

    Hey Eve do you know what a high Anion gap would mean? I had pretty much ignored it minus the note.
  30. Aquila

    Any Thoughts about these blood tests?

    Thanks Ric. That's a great site! Is your username Ric or RLC I can't tell? Your seem to know alot about M.E and related diseases. Do you have M.E? I think the Cortisol could just be burn out. I was very stressed and very sleep deprived on and off for 8 years and pushed my health alot. Then...