u/Spookyremy420

Hi everyone. I’m in such a predicament. I’ve been vegan for the animals for 7 years now and I’ve recently become chronically ill within the last year. Turns out I have Lyme and co infections, elhers danlos and dysautonomia.

I was talking to a functional doctor on the phone as an option for holistic approaches whilst taking the antibiotics and she said I need to consider animal products. I said I definitely wouldn’t eat meat or touch dairy, but she was asking me to consider fish oil as its healing for the brain (I have neuro symptoms significantly).

I feel sick at the thought of using a fish for my healing. It makes me genuinely so sad to even consider consuming that, equally I know I’m sick and been pretty much housebound for over a year. I feel selfish for even having a slight curiosity on how it might help.

Idk. What do you guys think? I have vegan omega 3 but she explained it takes twice as much to help brain health as fish does. I’m so stressed about this. I don’t want to consume an animal but I also need to heal.

(I highly doubt I’ll take anything animal related btw, my heart is w the animals.)

Idk why I feel so guilty because I ate sugar today. I woke up from a nap having a pretty big hypoglycaemia episode so I quickly rushed into action, grabbing a protein bar and a vegan sweet. I haven’t eaten refined sugar in SO long and I felt like a failure.

I haven’t started my bartonella treatment yet as they want me to be cleared by cardiology first which I appreciate bc of my safety but I’m so scared of my diet.

I KNOW the sweet saved me from feeling awful because I felt instantly better after eating them. I needed those fast acting sugars. My body was telling me it needed it ASAP because my blood sugar was clearly low.

It’s silly to feel guilty over helping your body when it needs something but I’ve been SO strict with my diet that now I’m sitting here feeling so freaked out that I ate about 18g of sugar which in the grand scheme of things isn’t that much.

Hey everyone, 25F and I finally had a Pap smear at my GP. I wanted to talk about my personal experience to hopefully calm somebody’s mind who’s struggling to get it done.

Firstly, the speculum was okay. That’s the only uncomfortable bit to be fair. They used a small one for me and it felt very personal but my doctor was kind and it wasn’t embarrassing. The smear itself felt like nothing apart from a couple barely noticeable scratchiness. It’s okay if you see a little bit of blood on the brushes, your cervix is delicate! It was super quick and I was only wincing because it just felt strange having somebody probe me lol - but I knew I was in safe hands and a female doctor knows how it feels too.

I have elhers danlos so being checked is super important due to prolapses and other connective tissue problems, but equally so important as somebody in a relationship who’s sexually active.

My best advice is to find a female doctor/nurse who it’s warm and kind, tell them you’re worried and have them talk you through the process while doing it. Have somebody there too. I had my mum beside me talking to me and it made such a difference, even having a nurse just to chat to will be a good distraction.

I have a lot of medical trauma due to negligence so naturally I was incredibly scared, but this wasn’t a bad experience at all.

Smear tests are so important, so please get one if you can! You’ve got this ❤️

Hey everyone, 25F and I finally had a Pap smear at my GP. I wanted to talk about my personal experience to hopefully calm somebody’s mind who’s struggling to get it done.

Firstly, the speculum was okay. That’s the only uncomfortable bit to be fair. They used a small one for me and it felt very personal but my doctor was kind and it wasn’t embarrassing. The smear itself felt like nothing apart from a couple barely noticeable scratchiness. It’s okay if you see a little bit of blood on the brushes, your cervix is delicate! It was super quick and I was only wincing because it just felt strange having somebody probe me lol - but I knew I was in safe hands and a female doctor knows how it feels too.

I have elhers danlos so being checked is super important due to prolapses and other connective tissue problems, but equally so important as somebody in a relationship who’s sexually active.

My best advice is to find a female doctor/nurse who it’s warm and kind, tell them you’re worried and have them talk you through the process while doing it. Have somebody there too. I had my mum beside me talking to me and it made such a difference, even having a nurse just to chat to will be a good distraction.

I have a lot of medical trauma due to negligence so naturally I was incredibly scared, but this wasn’t a bad experience at all.

Smear tests are so important, so please get one if you can! You’ve got this ❤️

Hey everyone, 25F and I finally had a Pap smear at my GP. I wanted to talk about my personal experience to hopefully calm somebody’s mind who’s struggling to get it done.

Firstly, the speculum was okay. That’s the only uncomfortable bit to be fair. They used a small one for me and it felt very personal but my doctor was kind and it wasn’t embarrassing. The smear itself felt like nothing apart from a couple barely noticeable scratchiness. It’s okay if you see a little bit of blood on the brushes, your cervix is delicate! It was super quick and I was only wincing because it just felt strange having somebody probe me lol - but I knew I was in safe hands and a female doctor knows how it feels too.

I have elhers danlos so being checked is super important due to prolapses and other connective tissue problems, but equally so important as somebody in a relationship who’s sexually active.

My best advice is to find a female doctor/nurse who it’s warm and kind, tell them you’re worried and have them talk you through the process while doing it. Have somebody there too. I had my mum beside me talking to me and it made such a difference, even having a nurse just to chat to will be a good distraction.

I have a lot of medical trauma due to negligence so naturally I was incredibly scared, but this wasn’t a bad experience at all.

Smear tests are so important, so please get one if you can! You’ve got this ❤️

Hi everyone! I’m 25F and have late stage Lyme disease and co infections, possibly long Covid (I’ve had it 4 times) and hypermobile elhers danlos.

Yesterday I saw my cardiologist and he said I almost certainly have it. My blood pressure is almost always low, which doctors kept saying was “normal” for my age and weight, I have anisocoria especially when I’m tired and stressed, palpitations, POTS like symptoms, sometimes hives on my skin randomly, fatigue, GI issues everyday (constipation, cramping, feeling sick and gassy - I also have a hiatal hernia).

I literally just ate lunch and my heart is pounding.

Before I was diagnosed with Lyme and co, my GPs kept telling me it was all psychosomatic and I was just anxious. I’m on anxiety meds so it just made sense to come to that dismissive conclusion… turns out, there’s a lot going on! Luckily, yeah, it’s treatable. It’s a loooong process but I’m gonna do it :).

Anyway, I’d love to chat to some others who have Dysautonomia and how you deal with everyday life?

Hi everyone, 25F here and I have hEDS and chronic Lyme and co infection which are currently (slowly) being treated finally.

I think I have MCAS, which makes sense with all these conditions. I crash with meals, get hives, sinus problems, shortness of breath, low BP, dizziness, POTS like symptoms but with a somewhat normal BPM (mine is naturally quite low) and major bloating.

I wondered who can diagnose this? I’m already doing so much privately so I can’t really afford it right now but I need it defo needs some kind of stabiliser.

Thank you!!

Does anyone else get this? I had lunch today and I’m literally exhausted now. It was tofu and rice noodles and I feel like I need a nap despite waking up at 1pm?

I mean, I have chronic GERD so no matter what I eat my throat and stomach are going crazy, then my bowels later on 😭😭 the GI stuff is insane! I’m on long term antibiotics for chronic Lyme too so there’s that.

Hey guys, 25f here, and I’ve come with an embarrassing situation. So, I’ve been having stomach cramps which could just be bowel stuff but I examined myself, always a good thing, and I found a sausage shaped lump at the back of my vagina.

It’s about a full finger in, and it feels rubbery and you can kinda move it. When I lay down it goes central but when I sit on the loo and check it’s slightly to the left.

I’ll be honest idk if it’s my cervix or not, I’ve never felt it before. I’ve just finished ovulating too.

Anyway, booking in to see my GP for a pap too on Monday hopefully!

EDIT: I do have elhers danlos syndrome and a prolapse in the over region so… not out the question for there too

I genuinely wondered if ANYONE in the world (or on this sub lol) has this.

I get oval pupils. They change shape, different sizes, no difference to huge difference. My MRIs are all good but yet they just do that.

My neuro ophthalmologist thinks it’s neuro inflammation and rheum think it’s linked to EDS. It’s weird, looks crazy, and I have no clue why.

This is one of my weirdest symptoms. I have bartonella, borreila and mycoplasma and most days I genuinely feel like I’ve smoked something crazy or drunk too much. I go out my body, everything doesn’t look real, I don’t feel real etc etc. It’s by far my scariest symptom!

Also weird dropping sensations through my body amongst other crazy sensations.

Does anyone else have this?

Hey guys, it’s getting worrying to me that I’ve lost so much weight. I really want to gain it back but I’ve done the whole gluten free and sugar free diet which is restricted me severely as an autistic person. I cut out nightshades and I think that was a terrible idea. I kept getting told potatoes were bad therefore it scared me and that was one of my comfort foods.

TW!! WEIGHT MENTION!!
—————
I’m now down to 92lbs and that’s the smallest I’ve ever been, even as somebody who’s recovered from an ED. It’s scaring me so much now! I’m trying to eat but my stomach gets annoyed bc of antibiotics and the restrictive diet is too much.

Do I become less restrictive? Prioritising staying healthy might be the play here…

My brother got married today up in the city and I genuinely thought I couldn’t go. I had a huge neuro flare last night and I was sobbing thinking I wouldn’t be able to muster the energy.

But I did. I got up. Got dressed. Felt shit, but fuck it. I’ll have a flare at home OR I’ll flare with people who love me.

Yes, I had two big neuro flares at the venue which sucked, but I locked in and went with the flow. As usual, the big flares wax and wane. My DP/dr kicked in as well as facial pain which has been kicking my butt all day, but I took breaks, got fresh air and ATE FOOD! I ate potatoes. I know they’re not the best for us but it’s one day and a special one, so why not? I had rice, veggies, but skipped the sorbet because my flare was being annoying. But oh well! Everything else is a win!

I’m home now and resting up. Flares still come and go and I’m definitely worn out now. But it was lovely regardless of the symptoms.

Fuck this disease. We deserve to live the happiest moments, and take every little success as a huge win.

TW- weight mentions

I feel like I’m going insane with this diet thing. I’ve cut out sugar (apart from fruit), gluten and I’m vegan already so no dairy at all. But I cannot do low carbs. My blood sugar tanks to the floor and I struggle with hypos.

I’m also autistic with ARFID, if I cut out carbs I’ll eat nothing at (TW!) I’m a recovered ED patient and Lyme and co have eaten my weight I put back on healthily…

I’m weighing up what’s great for recovery and what’s good for me mentally (and physically). I’m now super underweight and I’m focusing on gentle foods to help go back up again which in turn will help me fight off the bugs while being treated. I know people are super strict with diets but I’m also thinking of what’ll keep be going through this… and I think feeding myself is more important, right?

Hi everyone. I just wondered if anyone was like me? My fingers/thumb, elbows and neck are hypermobile but my knees and spine don’t seem to be - at least they don’t bend backwards and I can’t put my palms flat on the floor when bending over. I scored 5 or 6/10 (I can’t remember ugh) on the Beighton test. I have soft velvety stretchy skin but it’s not super fragile tbh.

I can bring my legs up quite far and put my foot flat on my waist (I use to stretch like that as a kid lol), and I bruise suuuuper easy on my shins especially.

Idk, I feel weird not being able to bend over like a lot of hEDS people.

Is anyone else like me?

Hi everyone! I’m starting LDN as per my Lyme team and I’ve also heard good things about this working for EDS patients too! I wondered if anyone else had some good stories with this drug?

I’m hoping it’ll help my immune system and inflammation as I have lots of systemic stuff going on.

Hi everyone, 25F and icl I’m spiralling a bit. I have hEDS diagnosed - stretchy skin, bendy upper body joints, velvety skin, aches and pains, Dysautonomia etc.

But I’ve been seeing people warn others of vEDS due to pale skin with veins visible. I’m super pale, so are my family. We’re fair and freckled so I never really considered this being an EDS this. But yeah, I can see my veins. Not severely, but in my face (forehead mostly), my legs, arms, not so much on my torso tbh. My thumb bends right over to the other side of my hand too. My rheum didn’t suspect Marfans at all.

I’m currently treating Lyme and co so my breathing has been scary recently, and chest pains. So now I’m aware of this I’m so scared it’s vEDS. I’m new to all this, and didn’t even know about genetic testing. It’s something I don’t even know how to go about.

My mum is slightly hypermobile and so is my sister, so I think it comes down that bloodline. My sister has a heart murmur but that’s all in terms of vascular problems - and she was coping throughout both her pregnancies.

Idk, I’m too scared to read anymore about it because I’ll just spiral into insanity with all of this scary stuff.

Sorry to ask for reassurance here guys!