Post Xmas set back

[expatkerry]

I was just wondering if any of you are suffering after the holiday. I've been self injecting for 12 months now almost daily and I thought my breathlessness was in the past but just before Xmas it flared up along with dizziness. My blood results haven't changed, MCV always slightly high at 98/99, homocystein and MMA normal. I have huge digestive issues with my PA and I know I have evidence of hemolysis (found in stool analysis). I've seen the PAS conference video and wonder if this is more to do with my microbiome than a side effect of PA as I've never been iron anaemic, macrocytic yes but at the moment it's not the case. I did have a lot of preparation for Xmas and 7 guests who stayed for a week! So I am frazzled, but also worried it might be something else. Any thoughts? Happy New year to all BTW!

[Nackapan]

I hope it isn't anything else

A few on here have had 'relapses ' of symptoms over christmas.

I certainly have unfortunately revisited symptoms I thought had gone .

I had a quiet time but still micro managing and was doing more cooking as some ate gluten free ect. Before christmas. Still alcohol free so cant blame that . Woke in a dream thinking I was in the war. Asleep and woken by new year fireworks.

Dudnt do any cooking when famiky here but talking set my headaches off

Awful. I only had my mum christmas day (she 90 and deaf though)and grown up children 2 nights.

Hope your symptoms will settle soon.

[expatkerry in reply to Nackapan]

Thanks for replying, I think I have probably just over done it. It just so happens that I have an appointment with a haematologist this month so I'm sure he'll check me out.

[Nackapan in reply to expatkerry]

Yes it dosdnt seem to take much.

Hope your appointment goes well.

[Hidden]

I also have huge digestive issues with my PA and like you I SI regularly. I had a comprehensive digestive stool analysis done and was horrified at the results. Several parasites and a number of pathogenic bacteria at levels well beyond what they should be. The results are from an accredited lab. I shared the results with my gastroenterologist who was very interested and who said more clinical trials are needed in the NHS and that they’re about 20 years from learning about this stuff. He did say that he believed that pathogens and parasites are implicated in autoimmunity and inflammatory bowel diseases but evidence is needed. I’m working with a nutritionist (some people on here find this a step too far) but I have to say it is working for me and that’s all the evidence I need. The testing is quite expensive but it is very comprehensive; besides parasites and pathogens it tests things like SIgA (your immune markers), H pylori and elastase (pancreatic enzymes) and how I discovered I had pancreatic insufficiency! Hope this helps, it’s only my personal experience.

[expatkerry in reply to Hidden]

Hi there, I too had a comprehensive stool test here in France (although it was done in a lab in Belgium!) and I have evidence of overgrowth (possibly Staph' which may be the reason for my breathlessness as the enzyme it produces breaks down blood cells) as well as very low lactobacillus and bifidobacterum bacteria, yet taking these in probiotics makes me very ill. I too have considered seeing a nutritionist but things may well have gone too far as widespread food in tolerances have left me with a highly restrictive diet. If a nutritionist gave me a food plan, I'm afraid it would go in the bin. I'm perfectly aware of what I should eat, but it's not what I can eat. I feel like I'm stuck with no more options to explore.

[expatkerry in reply to expatkerry]

BTW, I've tried every antibiotic including rifaximin (supposed to be 'miraculous') to no avail, and have been told I mustn't try any more as they will kill off what's left of my good bacteria. Things are the same here as far as research into the microbiomegoes, it's only just beginning.

[Hidden in reply to expatkerry]

I do know how you feel. I’m still experimenting with probiotics, prebiotics, food and antimicrobials instead of antibiotics. I have loads of body pains and not sure if it’s my out of whack mucrobiome or if it’s the B12. I keep checking in here to see if anyone has found out anything new! Good luck with your journey .

[Leils]

Yes I seem to have gone downhill a bit too

Did some big walks, ate too much sugar and drank alcohol

Back to healthy eating next week!