Thank you @Isaiah_40_31
I have these already which I take after each course of antibiotics and I shall buy some probiotic drinks today. I’ve just seen the nurse practitioner and my left ear canal is still red and inflamed and I have an ulcer deep at the back of my throat where I constantly feel the styloid. No more antibiotics for now though.
Await responses from JH and private hospital re vascular appt……
So sorry that your family aren’t supportive, I hope we can be more helpful on here, we understand…sending you a hug 
@inky , very nice write-up. I wonder if you managed to increase your folate level and if you noticed any differences in your symptoms, especially regarding your hypermobility. There are indeed some older studies as well as a recent one that link folate deficiency or metabolism issues to hypermobility (https://www.sciencedirect.com/science/article/pii/S240584402302594X). This is caused by mutations in the MTHFR chain. Like you, I also have some hypermobile joints and many of the symptoms you listed, and I recently found out that my folate level is low and my B12 level is high (above the “limit”). I haven’t checked my MMA and homocysteine levels yet, but I’m currently supplementing with methylated folate, which is supposed to be the best type of supplement if you have this mutation (which I’m not sure about, but I need to supplement anyway). Maybe this is something you should also consider.
Oh, yes you are, all of you and that keeps me going, thank you xx
@Mcwelly - I am also sending you a hug. Try to remember you are “hugged” by one of us from here whenever you need it.
@inky Good luck tomorrow! I’m counting the days until I see JH!
I am in such a terrible place. I can relate to so many of your symptoms. I’ve had to give up driving, going out, I have my parents coming in to look after my children & im unable to look after myself properly. This has absolutely ruined every part of my life.
Before this I was always on the go, running half marathons, in the gym, out with friends, taking the kids on days out… I’ve become the opposite… some miserable bedridden hysterical woman I do t even recognise any more.
I’m getting a CT venogram and neck ultrasound hopefully this week.
Hopefully compare notes post surgery sometime soon! 
Please let me know how you get on.
@inky Hope it went well today seeing JH! 
@inky , thinking of you, let us know how you got on when you’re able
@inky
I’m sorry you had a terrible time getting to the bottom of your maladies. I was going to suggest looking to EDS but it sounds like you’re aware of the connection between EDS, CCI, Intracranial Hypertension and Mast Cell Activation Syndrome. Best of luck on your future appointments and treatments. Also your brain fog sound a lot like what I experienced after heavy metal poisoning with the MRI contrast dye, gadolinium. Have you received that?
Sierra
@inky - Did you end up seeing Mr. Hughes on 4/22? If so, how did your appointment go? If you’ve answered this elsewhere, I apologize for asking. If not, then I’m glad I did.
