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

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  1. K

    Increased activity to the parasympathetic nervous system

    Hi I started taking Mestonin for orthostatic hypotension 4 days ago (60mg once a day) My cardiologist has said it can increase the activity of the parasympathetic nervous system which might help me and it’s good for pain. I am tolerating it well in terms of common side effects, however, it has...
  2. K

    Blood test abnormalities

    Thank you for your reply @Jonathan Edwards I agree and feel that this level of CRP is too high. Especially because my main symptoms are not fatigue. I feel severe malaise, pain, chills, heart and eye problems. I keep getting shrugged off and don't know what to do. My father has reactive...
  3. K

    Blood test abnormalities

    Thanks @Cheesus I will try and kick some arse! I know many people have abnormalities but I was meaning in the warped minds of the NHS-they don't think this. The thing is- anything that they don't understand they shun. The fact that I feel much better on antibiotics shows something. K
  4. K

    Blood test abnormalities

    @Cheesus I understand what you mean but I'm talking about these results not being inline with me/cfs. In the U.K. this illness is diagnosed by process of exclusion. Usually with normal blood test results and nothing else showing. With the level of debilitating symptoms I have- surely there is...
  5. K

    Blood test abnormalities

    Hi @Jonathan Edwards Is it possible to get some advice from you (or anyone else who can pitch in) As you know from the above post-I've had a abnormal blood tests since being ill. I was diagnosed with ME/cfs and have since developed POTS, hypothyroidism. Im not confident with the diagnosis of...
  6. K

    Chlamedia pneumoniae (Cpn) and Coxsackie

    @Hip it really has been so important for me. I have, like many of us, become my own doctor, and this was invaluable in my decisions. It's a consise document that every person newly diagnosed should have. I've sent it to many others with ME/CFS who don't know what to do next. Just wish our...
  7. K

    Chlamedia pneumoniae (Cpn) and Coxsackie

    Thanks @JaimeS . Wow, I've used that roadmap so much since being ill. I've literally gone through each round and tested and trialled various things. I'm now out of being bed bound to moving around the house a bit. Didn't realise @Hip wrote that. It's brilliant. I'm really hoping that this is a...
  8. K

    Chlamedia Phnemoniae and Coxsackie

    @Hip Thanks for all that information-its helped me a lot
  9. K

    Chlamedia Phnemoniae and Coxsackie

    Thanks very much @Hip Well I'm not sure now as my dad as reactive arthritis and I have hypothyroidism which was borderline hashimotos. I guess the only thing is to try it and see if it helps. I will try Cpn treatment first though :-)
  10. K

    Chlamedia Phnemoniae and Coxsackie

    Thank you @Hip. I appreciate your reply. That's a really good way of looking at things. I may just start with the Cpn treatment first as it would be a good indicator to what symptoms it helps. In relation to oxymatrine. That's where I'm not sure what to do. What are classed as auto immune...
  11. K

    Chlamedia pneumoniae (Cpn) and Coxsackie

    Hi there After much illness and lots of different testing, I have found out that I have recent and chronic infections to Chlamedia pneumoniae (Cpn) and Coxsackie. I'm relieved to have found something as whatever it is had affected my heart, thyroid, liver, eyes, skin, lymph nodes etc etc. As...
  12. K

    Chlamedia Phnemoniae and Coxsackie

    @duncan Thank you for the reply. Yes, maybe it would be better to move it. It's so confusing as I feel I sit in between two camps. These are apparently co infections. But then they see implicated in ME. @Hip Thank you. Apologies for the spelling- my mind was on pneumonia as I had just been...
  13. K

    Chlamedia Phnemoniae and Coxsackie

    P.s I was negative for Lyme and other co infections.
  14. K

    Chlamedia Phnemoniae and Coxsackie

    Hi After much illness and lots of different testing, I have found to have recent and chronic infections to Chlamedia pneumoniae (Cpn) and Coxsackie. I'm relieved to have found something as whatever it is had affected my heart, thyroid, liver, eyes, skin, lymph nodes etc etc. As anyone found...
  15. K

    Valacyclovir dosage

    Thanks @heapsreal. That's very helpful. Could I ask you your doseage? I was on 4g of valaciclovir for two months and then 2g for one month. K
  16. K

    Valacyclovir dosage

    Hi @heapsreal Thank your for your advice. I'm having a problem finding Famvir that's affordable and that will post to the U.K. The ones I've found are coming in at £12 per pill!! I was spending around £120 a month on valaciclovir so can't afford more than that. K
  17. K

    Valacyclovir dosage

    Hi, I just wanted to get some advice please. I was on valacyclovir (generic version) for three months and have had to come off it. I just had too much kidney pain and generally felt worse apart from being able to stand longer than a minute compared to before I started. I'm now off the meds...
  18. K

    Valacyclovir dosage

    Hi everyone- just wanted to update you guys and see what your thoughts are on things. I've been on 4g of valacicolvir daily for nearly 8 weeks now and still feel worse I'm not sure if this is a good thing. My doctor said that it's hard to decipher whether it's a normal reaction to the drug or...
  19. K

    Valacyclovir dosage

    Hi everyone- So, I have been on 4g of valacyclovir daily for 5 weeks now. I definitely feel worse, have worse fatigue, joint pain, twitching and back/between shoulder blade pain. What I've realised is that the pain (which I was thinking was was kidney pain) is the same pain I experienced when I...
  20. K

    Valacyclovir dosage

    @Mackee yhats a great idea. Thanks. I will look into Zantac although my stomach issues seem to have subsided. @SOC thank you very much for that info. It's really funny as for the first time in two years I have a cold! I wonder if that's because of the vaktrex?! I also haven't had painful armpit...
  21. K

    Valacyclovir dosage

    Thanks @SOC i really didn't know that. It may be similar to a herx but not. I heard that people do get worse before they get better on it though. My doctor told me this: Dr learner found that patients had a “Herxsheimer” response with worsening of symptoms and a worsening score continuing for...
  22. K

    Valacyclovir dosage

    Thank you everyone- I really appreciate your help :-) I think I will start slowly but feeling really bad already so I don't know if this is a herx, feels like it as had one before. My worse symptoms of ME are viral related so hoping this will help. I have also got stomachache so I don't know...
  23. K

    Valacyclovir dosage

    Thanks @charles shepherd That's very interesting. Thank god we have professor Montoya helping out patient group! I do feel the UK are seriously behind in terms of treatment options and diagnostic methods. I was particularly interested in the fact that anti virals can reduce inflammation...
  24. K

    Valacyclovir dosage

    Thanks @
  25. K

    Valacyclovir dosage

    Thank you everyone for you Mr replies- it's. It's really helpful to get patients experiences on this. @Mackee - that would be great if you could let me know what didn't work for you and what protocol you are on now @minkeygirl - wow it's sounds like it can be very individual reactions to this...
  26. K

    Valacyclovir dosage

    Hi there I have been prescribed valacyclovir by my ME specialist as I have high EBV titres and symptoms of chronic reactivation. I have been advised to take 4g daily. I think she wants me to take this amongst straight away. Does that seem a lot? I know she is basing this dosage on the fact that...
  27. K

    Treatment options-advice needed!!!

    Hi @SOC Thank you for your reply- That was my biggest worry as I have heard valcyte can have nasty affects and I am mod/severe sufferer so don't want to relapse too much. One of the biggest queries I have and don't understand is which one will get to the root cause. For example, if I do have...
  28. K

    Treatment options-advice needed!!!

    Hi @xrunner Thank you very much for your reply. I appreciate it. Would you say it's important to get the vital antibody tests for EBV and others before starting valcyte? Dr M would prefer this and I would too but it's expensive and I have limited funds. She would be happy to trial me on some...
  29. K

    Treatment options-advice needed!!!

    Anyone???
  30. K

    Treatment options-advice needed!!!

    Hi Everyone, I'm at a loss on what to do next, please could I get some advice from you knowledgable lot! :) I have moderate/severe ME and POTS and have had this for two years. I have managed to go from being bed bound to house bound in this time due to intensive resting and taking various...