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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Allyb510

    In the end it was Lyme

    Thanks for that. Will have a read.
  2. Allyb510

    In the end it was Lyme

    @ukxmrv Oh dear, that's what I was afraid of. If I'm negative, they will feel justified in neglecting me further. I've often thought that if I had the energy, I would research how the NHS determines which tests they use. Why do they use the test(s) they do for Lyme and why do they believe...
  3. Allyb510

    In the end it was Lyme

    Well, knowing the NHS, they'll say to do nothing in late stage Lyme! If so, I won't be listening.
  4. Allyb510

    In the end it was Lyme

    Thanks for that Duncan. I'm in the process of reading Dr. Horowitz's book at the moment and then I plan to study the latest Lyme research. Due to being untreated for so long I am affected in virtually every system of the body. I will definitely retest Borrelia and coinfections throughout my...
  5. Allyb510

    In the end it was Lyme

    It was only a few days ago so the result is not yet available.
  6. Allyb510

    In the end it was Lyme

    Thanks. I was tested for Babesia, Bartonella, Brucella, Mycoplasma, Coxsiella, Rickettsia and Yersinia which were negative. Chlamydia pneumoniae and Parvovirus B19 were positive as well as Borrelia burgdorferi sensu stricto. You were right about that. How does it manifest?
  7. Allyb510

    In the end it was Lyme

    Hi. That's awful. It's a shame that people have to worry about hiking and camping in beautiful countryside, in case of tick bite. It does make you think twice. What antibiotics have you found effective and which not? I hope you continue to improve. It's definitely a long, winding process...
  8. Allyb510

    In the end it was Lyme

    Hi. I tested positive and have the results to prove it. My GP has had a look at it and I've been retested here in the UK on the basis of that. I don't know what the doctor says to other people but, with my medical history, he felt that Lyme was a possibility, and he was right.
  9. Allyb510

    In the end it was Lyme

    Will see what I can do. I'm not sure how long it will be before I receive his treatment plan. Why don't you see him? I don't think you'd regret it.
  10. Allyb510

    In the end it was Lyme

    Hi. I have to admit my GP's responded quite well to these positive test results. I have appointments with a Rheumatology and a Medical Clinic, and she organised a number of bloods, including an NHS Lyme test. I don't know what type of test it was but I'll certainly be finding out. If you ask...
  11. Allyb510

    In the end it was Lyme

    So it seems it was Lyme, in the end. APRIL 2017 This is an account of my 2nd visit to the doctor for my test results. But first, I’ll tell you a story. Feel free to skip ahead to the business end of this post. We had a massive puncture on the motorway when we were 15 minutes away from our...
  12. Allyb510

    Fasting-like diet reduces multiple sclerosis symptoms: applications for ME?

    Ten years ago my oral allergy and MCAS (I didn't know I had it then) were helped by not eating, it seemed. I used to go 4 days at a time and felt much better on it. It was strangely liberating. Even my ME/Lyme symptoms weren't as severe while fasting. However this phase did not last. I...
  13. Allyb510

    Tickplex a new test for Lyme and Co-infection

    Not available in the U.K.? Typical.
  14. Allyb510

    My visit with UK specialist who can diagnose MCAS

    What a great guy! That is how doctors should behave :-) Let us know how you get on with that.
  15. Allyb510

    My visit with UK specialist who can diagnose MCAS

    Yes, I too have noticed a definite connection between blood sugar fluctuation and reactions, but now I know there's a name for it ;-)! I sometimes have confusing reactions that come out of nowhere (and they can be serious and require Casualty), for instance, in late morning when I've been...
  16. Allyb510

    My visit with UK specialist who can diagnose MCAS

    He was. He seemed pleasant but the subject matter was serious of course. I wished it had been a longer segment.
  17. Allyb510

    My visit with UK specialist who can diagnose MCAS

    QUOTE="ryan31337, post: 824345, member: 22803"]Hi @Allyb510, My POTS cardio has recommended onward referrals by name, I've then gone back to my GP to actually write the referral via the NHS, so I can get in the system. Ahh, that's how it works. Is there any chance I could have your POTS...
  18. Allyb510

    My visit with UK specialist who can diagnose MCAS

    Hi, I watched the programme and found it interesting. The young patient featured was a severe case and she needed continuous IV antihistamines. How terrible. She had a positive outlook despite that...I don't know how she managed to keep so upbeat.
  19. Allyb510

    My visit with UK specialist who can diagnose MCAS

    @ukxmrv, Thanks for that! I will definitely watch. I'm assuming it's Dr. Weston's Casebook...Anything that helps me conquer the rogue mast cells has got to be worthwhile...
  20. Allyb510

    My visit with UK specialist who can diagnose MCAS

    No worries J. Hope you feel better and that all goes well at the doctors. Don't get me started on garlic...I used to eat 6 cloves at a sitting, in the hopes that it would kill all those toxic organisms. I wonder if it works on Borrelia b.? Somehow, I don't think so...
  21. Allyb510

    My visit with UK specialist who can diagnose MCAS

    Well, you've hit the nail on the head by talking about self-managing ahmo. It's a double-edged sword. Sometimes when I'm particularly unwell, I wish there was someone knowledgeable and powerful (a super doc) to step in and 'take care of me for a while'. Manage my health properly, not the way...
  22. Allyb510

    My visit with UK specialist who can diagnose MCAS

    I'll definitely have a go with the watermelon as it is a natural source of flavonoids. If it helps my high BP then that would be a bonus. Cheers for all the top tips ;-)
  23. Allyb510

    My visit with UK specialist who can diagnose MCAS

    Is it your POTS doc who orchestrates your referrals to other specialists? My GP said she's referring me to a rheumatologist for my elevated inflammatory markers and, I could have sworn she said, that he would do the onward referrals to the endo for my thyroid issues and the gastro for the...
  24. Allyb510

    My visit with UK specialist who can diagnose MCAS

    @Jigsaw I'm glad to see it wasn't just me who was a crazy chick pea lady ;)! There are others of us out there. I could eat hummus, and chick peas in general, for Britain. I didn't realise they were loaded with phyto-oestrogens...maybe my body was trying to tell me something all along? I...
  25. Allyb510

    My visit with UK specialist who can diagnose MCAS

    It's sad that you had to sell but it must have been a relief in a way to get something more manageable. I've seen programmes about ways of maximising planting in a small garden and it's amazing what can be achieved, usually by growing upward. And if you manage to plant all that you're...
  26. Allyb510

    My visit with UK specialist who can diagnose MCAS

    Oh no. What an awful experience Ryan! Frightening. I'm terrified of the tilt table test now. Is it absolutely necessary for diagnosing POTS? I have a history of fainting too, admittedly not recently, since I usually lie down immediately whenever I feel dizziness coming on. And I don't go...
  27. Allyb510

    My visit with UK specialist who can diagnose MCAS

    See...can't even spell any more...p r e s u m e d. Need to read as many scientific articles as possible to retrain my brain...
  28. Allyb510

    My visit with UK specialist who can diagnose MCAS

    Thanks. I'll have to digest that article in stages Ryan as it will stretch my foggy brain's capacity to the limit. Well, I always suspected I might have had POTS because of the sickly dizziness and swaying on rising or when standing still, but then, because I usually had high blood pressure, I...
  29. Allyb510

    My visit with UK specialist who can diagnose MCAS

    The Yorktest Labs website says it is but you've got to eat something after all. I always liked almond butter on oatcakes particularly but oats cause me trouble. As a former gardener, did you ever have a vegetable plot? That would be heaven.