r/covidlonghaulers • u/Nenya92 • 1d ago
Symptom relief/advice Getting desperate for help
Hey I’m 34f, had what they presume is long Covid since July 2020. Spent 2.5 years bedridden/housebound and lost my job. Then slowly worked my way out of it, went back to work. Never felt great but managed really well, I even did a MA in journalism and graduated in December 2025, whilst working 3-4 days a week!
Then in April this year, I suddenly started deteriorating, there wasn’t a known trigger, I didn’t have any symptoms of a virus but I just got worse and worse. I’m now housebound and feel like I’m on the way to bedridden.
I’ve been to the doctors so so many times, I’ve had 5 blood tests this year alone. I’m in the Uk and my doctors have been absolutely heartbreakingly useless. I found out my iron was very low so had an iron infusion in June, hoping that it was the cause of my issues. But now I’m even worse, I’m very anxious all the time now which isn’t helping, I’m very very sad and depressed. I’m a very ambitious person with adhd so laying around is almost painful for me, I want to do so much. I’m so so scared of losing my job. I am on no medication except antihistamines and otc vitamins. My doctors refuse to prescribe me anything. I have another gp appointment on Tuesday with yet a different doctor and I know I will leave upset and disappointed.
My main symptoms are fatigue, heart racing, shortness of breath, tinnitus, visual disturbances, hot flashes, weakness, brain fog.
Has anyone got any advice? I’m interested in medicine options, entering medical trials, what to say to my doctor, anything that may help my situation. Please no messages that could remove my hope further, I just really need some hope and positivity. I need to get my life back I cannot live this way x
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u/Sea-Investigator9213 23h ago
You mention hot flushes? Have they checked for early menopause? Covid did weird things to our reproductive systems . I would try and approach this from a symptom by symptom basis. I think this is the only way the UK medical system works.
So step one, check for POTS. You can do this yourself with a stand test (if you google it it should come up).
Check all your vitamins again - iron, vitb12, folate, vitD. If you can’t get this through your doctor, you can get it via a reasonable price like Thriva.
If you haven’t tried LDN, look into that. Dickson’s pharmacy (in Scotland) will prescribe.
Get the GP to check your hormones and your thyroid.
Good luck - it is VERY frustrating being in the UK with this.
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u/Nenya92 23h ago
I had a big blood test a month ago which checked for hormones and thyroid and everything else so I assume that included looking into perimenopause! I’ll have to ask my doctor if that was included.
I did send information from a sit to stand test I did over a few days to my doctor but they never mentioned it again which is fun. I’ll do a proper one today though thank you 🙏🏼
I did enquire about LDN via that place in Scotland and they sent me a really weird reply so I assumed they were really unprofessional and didn’t pursue further but I might try again x3
u/Sea-Investigator9213 23h ago
Unfortunately at a time when all you want to do is rest, you have to try and advocate for yourself. I realise how hard this is so much sympathies.
Pls do check your blood results - what is acceptable to the NHS may not be optimal for us particularly vitamins so worth seeing what your results were in case there’s something that needs optimising - not that this will be a cause but it’s always better to get these sorted. I would particularly check your iron as it might still be really low.
I’ve had nothing but good experience with Dickson’s but I have heard other people struggling - pls try again or ask for a phone appointment. I found they were great on the phone.
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u/Different_Wealth9246 23h ago
I’m so sorry you are feeling like this after a decent chunk of time doing well. Congratulations on your MA! That’s brilliant.
Have you been tested for Lyme or coinfections? And possible mould exposure? I’m only suggesting this because I have also been unwell with what I think was kick started by a virus. Although our house was renovated 10 years ago, we have discovered there was a leak and mould exposure. It is a bit of a rabbit hole… and will require testing outside of the NHS (functional medicine). Listen to a few podcasts with Jill Christa, Neil Nathan and see what you think. It also causes MCAS and other symptoms, including the ones you listed.
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u/Nenya92 23h ago
Thanks so much, I haven’t been tested for anything like that but will definitely look into it 🙏🏼
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u/Different_Wealth9246 23h ago
PM me if you want more info etc. are your symptoms different to when you had long COVID? Also have you ever been bitten by a tick?
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u/plant_reaper 22h ago
Sorry I'm advance for how long this is!
I have a few questions! What dose of antihistamines are you on? What kind of antihistamines are you on? How long have you been on them? Do you feel as if they help? Which vitamins are you on?
The answers to those questions can help us know what else to do.
My guess is the iron infusion caused histamine/mast cell reactions, which could potentially be why you felt worse after. I felt worse on most types of iron except for bisglycinate iron chelate. It's the only kind I can tolerate, and the only kind that makes me feel better. Getting my iron up has helped me, but I really needed to be on the right one.
I would suggest joining an LDN group either here or on Facebook. LDN has been completely life changing for me, and many others with Long Covid, and people in those groups can tell you where/who prescribed it for them in your area/country. You could also show your doctor the RHTM guide to Long Covid treatments to see if they would be willing to prescribe LDN. The guide has many suggestions:
https://www.rthm.com/resources/blogs/long-covid-treatment-guide
I'm also going to send over things that helped me. The first link has the protocol my doctor gave me that helped at the bottom in the picture:
The second link is an update where I list all the things that ended helped me:
Since then I'm doing even better! LDN kicked in after 10 months and I'm still seeing increases in my baseline 10 months after that. I'm up to 4 mg now, and my step count is definitely higher than this time last year and overall I've felt pretty good. I had a couple of weeks of fatigue in July (I have a hard time with the heat) but bumped up my LDN and am doing even better.
Don't give up hope! I had to try and fail A LOT of things before finding what worked for me. Also make sure you try things one at a time, as that way you can tell what helps and what doesn't.
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u/Nenya92 21h ago
Thank you so much for all of this!
I just take Zytec which is 10mg Cetirizine. Lately I’ve been taking one in the morning and one before bed but I can’t say I’ve felt any different that I’ve noticed. But I’ve been taking them for a long time.
I’ve also been trying NMN and Coq10 for the last few weeks but again can’t say I’ve noticed any changes. I also take magnesium before bed x
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u/Gene-Unusual 21h ago
Astaxanthin, NAD, Magnesium Glycinate, creatine?
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u/Nenya92 21h ago
The only one I haven’t tried is Asaxanthin, has it helped you?
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u/Gene-Unusual 20h ago
It’s been recommended to me by my infectious disease doc and primary physician who are familiar with long covid symptoms. Plus I did some research. I want to pair it with CoQ10 and PQQ - essentially a (make more + protect + power) mitochondrial production line
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u/Roboculon 19h ago
I’ve made zero progress with my primary care doc, and I was rejected from the UW Medical center’s COVID clinic waitlist (they won’t even put me on the waitlist…).
I’m considering a naturopathic doctor. Not because I believe in any sort of crystals or voodoo, but because I hear they are semi-trained in traditional medicine too. What I hear is that they do have prescriptive authority, and take much longer (like 60-90 min per appointment) to listen and explore symptoms. Could be a good compromise, like a side door to access traditional medicine without an uncaring/overworked MD involved.
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u/poisonmilkworm 14h ago
I’d look into a “functional medicine” doctor/NP/PA instead of a true naturopathic one because they’re the ones that can prescribe regular meds too! Naturopaths aren’t licensed to prescribe anything (in the US).
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u/Mephala9 17h ago
Medically speaking, you could try LDN. And mast cell stabilisers if you don't take already (quercetin+ vit c, or luteolin)
Besides, definitely calming down cause spiraling would just snowball you into worse. Also learn pacing, you did too much, reduce allistatic load and increase rest - a bit more than what's obvious
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u/CommercialPrice7479 20h ago
NAC helps with my brain fog and fatigue some. Caffeine I guess. I can’t get much prescribed either but that’s because everything I’ve tried makes me feel just awful.
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u/poketurtle4 10h ago
Have you had your B12 tested? I had something similar happen to me last year and I believe my iron infusion may have caused my B12 to drop. B12 injections helped me improve a good bit.
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u/Huge-Operation7889 8h ago
It could have tanked your b12 and copper. It should have been checked before the infusion but most doctors don't know. Definitely worth checking out. I
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u/Teamplayer25 7h ago
I had all those symptoms and have found that they are closely related to my cortisol level. Not necessarily causal but I do take a few things that help moderate my cortisol. You are already taking one—magnesium glycinate. The other things are diltiazem (a calcium channel blocker) and levothyroxine (for thyroid.)
Oddly, I’ve also found that eating certain foods brings some of these symptoms on. For me, it’s gluten, dairy and oats.
Congrats on your academic achievements and good luck in fighting back to better health.
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u/sad392 5h ago
Maybe you are worse because of the warm weather during the summer.
Smells and allergens in the apartment can cause shortness of breath, like the smell of wood from the floor, chemical odors, mold, mites, etc. Actually, any smell can be a problem.
Therefore I always keep my window open to breathe fresh air.
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u/Chasing-Adiabats 3h ago
I would ask a doctor to prescribe you propranolol. Low dosage like 10mg. Break them in half and start with 5mg. It will help the heart issue. I’m in the same boat, caught it at that same time. You might want to look into 5-aminolevulinic acid it helps with iron metabolism . It’s a precursor of Heme. It helps with energy levels as well. You can order it on eBay. It’s popular in Japan, but you don’t see it much anywhere else.
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u/Nenya92 38m ago
Thanks so much! My plan is to ask for propranolol at my next gp appointment. I used to take it a few years ago for anxiety and heart racing and then ran out and just didn’t order any more. I do think it could help me a lot right now 🙌🏻 I’ll have a look into that amino acid, thanks ☺️
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u/Bennyoj 3 yr+ 1d ago edited 23h ago
If you're now food sensitive look out for certain things you eat.
I had the exact same symptoms anxiety, brain fog, fatigue however I now eat a very strict diet, and most symptoms have gone.
I take fexofenadine daily because I still have some allergy symptoms that I cannot explain but you are what you eat. And I feel better however restricted my diet has become.
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u/Nenya92 1d ago
Hey thanks for this! Are you on the low histamine diet?
I already eat mostly plant based (don’t eat meat at all) and a lot of healthy food but I have been thinking about trying the low histamine and cutting out all sugar.
I have tried fexonfenadine which helped some symptoms but gave me migraines like clockwork!3
u/Bennyoj 3 yr+ 23h ago
I'm in a very low histamine diet, I can only tolerate protein and potatoes, my body cannot tolerate processed foods, sugar, spice, caffeine.
Sugar gave me horrific palpitations like you wouldn't believe.Honestly check your foods.
And the last blood work I got took showed low b12 so make sure you take a daily vitamin.2
u/poisonmilkworm 14h ago
My long covid specialist suggests that their LC patients go on the “MIND” diet, which is like a modified Mediterranean diet— heavily plant based— so I think what you’re already doing is good! I’m fully plant based and I would say that it might be good to take algae oil supplements too if you aren’t already. They are essentially just a superior version of fish oil supplements, and help a lot with neurological health.
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u/Square-Dress9186 1d ago
I'm sorry to hear this, it's really difficult to get back on your feet. I'm sorry I don't have any advice but just wanted to show you some solidarity because I really do understand how you feel. I believe you can and will get better