Contracting Covid

[Elle2090]

Hi Everyone 👋🏽

I'm curious to know if anyone with Encephalitis has contracted covid here and how you're doing? I.e. did your Encephalitis flare up again, did you get through it unscathed?

The omicron variant is out of control and to be very honest I'm scared cause everyone around me is getting it quickly that I might be next. As dramatic as this may sound, I've already started preparing my will because of this I have Anti nmda Receptor Encephalitis just for context.

Thank you,

Elle

[kitnkaboodle]

Hey, Elle. I understand your fear. I was hospitalized with meningoencephalitis (cause unknown) in October 2020 at age 24, during the first, unvaccinated COVID spike. Starting well before my illness, my family, now-ex-boyfriend, and I were all limiting contact with others and wearing N95s religiously. E made my anxiety about COVID go off the charts. Our precautions against COVID continued until we were all “fully” vaccinated with two doses of Moderna or Pfizer by early May 2021. I even did three months of physical therapy in an N95 and still have the subtle acne to prove it.

In late June 2021, we traveled to a family wedding. We think my mother contracted a break-through case of COVID (delta) there. (She still can’t taste or smell properly.) She gave it to me in early July. For about a week, I was resting and isolating. My main symptoms were that of a head cold: sinus headache, congestion, fatigue. Frankly, it was a walk in the park compared to my experience with E. I did have shortness of breath, so the virtual doc sent me to the ER in the middle of the night because of my medical history of sepsis and E. The ER doc suggested nasal decongestants and fluids. I was fine by the end of the week.

I do understand the fear. The anxiety eased up for me, once I realized that COVID is here to stay, and there will always be another variant—likely weaker than the original, as mutations generally weaken viruses. Also, we’ve survived worse! E already ravaged my body; what (more) can COVID do to me?

Honestly, I am more concerned about getting the third dose “booster.” I think it’s much too early for boosters, and it might be harder on me than my mild case of assumed break-through COVID.

But I need to add this disclaimer: I am not on any immunosuppressive or anti-seizure medications. Currently, my most “serious” prescription is Myrbetriq for overactive bladder. I am being monitored for antibody-negative autoimmune encephalitis, but an enterovirus etiology seems more likely. Therefore, take what I say with the smallest grain of salt, and talk to a trusted doctor.

Take care,

Kit

[Elle2090 in reply to kitnkaboodle]

Thanks so much for sharing your experience kitnkaboodle! I really appreciate it and am so glad you got out the other end of Covid relatively unscathed. I'm also bit nervous about getting my booster, but we shall see 🙂

[kitnkaboodle in reply to Elle2090]

I’m happy to help. Let me know what other questions you have.

I want to add that N95s are literally the ONLY masks worth wearing. It’s despicable, but the US government and public health officials have lied and changed the mask narrative repeatedly. My brother’s PhD lab have tested every type of mask, and they confirmed what common sense would suggest: fabric and even surgical masks do next to nothing to protect either person. Contrary to popular belief, there is not an N95 shortage, at least where I live. I can hop online and buy some anytime. If you are committed to permanently avoiding COVID, always wear an N95 properly (full seal) in public. You’ll get the acne to prove it. But, everyone has gotten a virus in their lifetime, and COVID will be no different. Everyone will get it eventually.

I know this isn’t particularly comforting, but I figured honesty is best. Here’s to hoping 2022 will be better than the last two years combined. ✨

[alpappy in reply to kitnkaboodle]

Hi The booster really knocked me slept for three days memory very foggy and my taste ( which has remained) is the the worst it has even been I know Covid can affect the brain bu the booster does too

[Paula-38]

Hi Elle,

Welcome to the forum.

I had Herpes Simplex Encephalitis way back in the 1970's the day after my first birthday and I was also diagnosed with Status Epilepticus simultaneously so I had generalised status seizures every time I picked something up and was often hospitalised as a kid, They gradually reduced as I got older and eventually stopped when I was 18 and I have been free ever since, approximately 20 something years ago.

I never got Encephalitis again, I have not had Covid neither but I am triple jabbed against it.

However, I also have had paranoid thoughts, anxiety, depression and Obsessive Compulsive Disorder referred to as OCD.

I was diagnosed with profound OCD the same year my seizures stopped, it is now refractory (prone to relapse).

I have a slow processing speed, slowed speed of thought, poor attention span and poor Executive Functioning i.e talking about two different conversations would make me all worked up, multi-tasking etc, keeping up with conversation especially if people are talking too fast that sort of thing makes me panic.

There was a time when I couldn't make a proper sentence verbally, I used to get stuck in trying to say what I had to say, stopping and starting etc.

I am ok with the latter now, but my ''wording things'' is not very good, trying to put my views across is terrible as I have to repeat the same thing again but worded differently I sometimes have to say things 3 or 4 times. Trying to look for the right word in my head, and sometimes it takes a little while to come to me, but I keep on persevering.

I sometimes come out with rubbish, meaning it sometimes doesn't seem to make sense or I want to say something but I say something completely different if my mind wonders onto other things while I'm talking and I wish it wouldn't. I'm unable to concentrate on one thing, it is only after I said whatever it was, I had to try to think quick and correct myself immediately which is far from easy for me, but at least I CAN do that now even if it does take a few minutes because I never used to be able to do that till about 15 years ago. I still have to work on that one more. I sometimes say one thing and I mean another.

If it wasn't for my OCD, I could say I have recovered from most things now.

Please feel free to ask me any questions at all anytime.

I sincerely hope things improve for you "slowly but surely" it takes some time so being patient with yourself is the key I think.

Hope a goes well for you Elle.

Paula_38

[Jujubee108 in reply to Paula-38]

Hi Elle,

I had VE in August 2020 and am double vaccinated. My family had Covid in December, likely Omicron, mild symptoms. Despite the fact we live in the same house and didn’t keep a distance ( our house is way too small for that!) - I didn’t get it. A small blessing after all after all the trials of Encephalitis, but one I am grateful for!

warm wishes

Julia

[Elle2090 in reply to Jujubee108]

Dang, so lucky to escape it Julia! I hope you can continue to dodge it!! Stay safe 🙂

[Elle2090 in reply to Paula-38]

Thank you Paula-38! Thank you for sharing your story with me 😊

[Paula-38 in reply to Elle2090]

You are so welcome. 😊

[Gandalf2]

Hi Elle, I'm not a professional but after looking at all the available evidence I decided to forgo the Vaxx and rely on natural immunity. I bought some reusable washable masks just to blend in when required. Plus my Enc. consultant said I have enough to cope with without taking on the vaxx and its side effects.

[Trashgod]

Hey Elle, I have Autoimmune Caspr2 encephalitis which I believe is similar to anti nmda, I haven’t had Covid but I find mine flares up very badly when I do have the flu. I’m interested in talking more about it as I don’t know anyone with a similar diagnoses so my Snapchat is @lillieanjeffree if you feel the same.

[LiLuMi]

I had encephalitis in the fall of 2013, from a bug bite. I think I caught Covid in the first round, coming through Dublin airport in February 2020 the same day all the people returned from their skiing holidays in Northern Italy. My hubby, 2 kids and I were very, very sick, and I woke up drowning in phlegm one night. There weren't any tests available, so we just got on with life; after 8-10 days we were all back to school and work until everything shut down. I was happy to get the 1st Pfizer vaccine in March 2021, along with my daughter, who is physically disabled, and we got our boosters in May. We had sore arms, and I had some fatigue for a couple days after the 1st dose. The 2nd dose left me with exhaustion and headaches for 10 days, but I think that was in conjunction with the HRT the gynecologist had insisted that I start in April, against my better judgement, because the Pill always gave me problems. And, we all caught Covid in November - our 20 person bubble was finally breached, and 17 of us got it. All in all, it was much milder than the first time around, more like a mild flu with the fever. I still have headaches a few times a week and struggled with a little bit of fatigue and brain fog at first, but, as someone said above, it was not as bad as encephalitis. And, I *really* don't want a bad case of anything ever again, so I will go for my booster at the 12 week mark after contracting Covid. Our bodies only hold active immunity against coronaviruses in general for 3-6 months, which is why they have annual flu shots. Every time I get sick, even just a cold, it takes me longer to recover since Covid. I expect a bit of brain fog, headaches, and fatigue, as my brain is already so beat up, it can't spare more injury. And Covid is a clotting disease as well as a respiratory one, which is why it is *still* more terrifying than the cold or flu, and even though it's becoming endemic, it is still going to cause a lot of death and severe disability going forward. I think most of us have survived worse than what Covid will give us, but I didn't want to take the chance of meeting it unvaccinated.

[kitnkaboodle in reply to LiLuMi]

I appreciated reading your post. Thanks for sharing. To clarify from my earlier contributions on this thread and maintain consistency, I do think most people should elect to be vaccinated against COVID, if possible. As Gandalf2 said, it is the individual’s decision and is not a good idea for everyone, both of which are also true. Ultimately, vaccination and N95s are the best forces against high viral load and disease severity, BUT we will all get it eventually, and we should learn how to live in a world containing COVID. I think it is also reasonable to question public health policy, as it is constantly changing based on the whims of a few individuals. (And, at the risk of pedantry, coronaviruses don’t cause the flu. There is a separate set of influenza viruses.)

Finally, it’s unrelated to this thread, but I just want to say I understand your decisions about the Pill and hormone treatments. I think women tend to experience extra, unnecessary problems when trying to regulate and prevent fertility. I hope you can find a reasonable gynecologist who listens to you, provides healthy, non-hormonal alternatives, and respects your decisions.

[LiLuMi in reply to kitnkaboodle]

Oh yes, not everyone can get the vaccine, but I didn't think that was what Elle was asking about. I thought she wanted to know our personal experiences, and since I have had it twice and gotten the vaccines, I figured I would chime in.

The best thing to come out, as far as public policy, is the discovery that the first US Surgeon General misunderstood a TB study and assumed any viral aerosol larger than 5 microns would fall to the ground, which guided public policies worldwide and is incorrect! For 55 years, every health professional was taught that communicable disease spread on surfaces, which is why they push social distancing and handwashing when neither really works.

[kitnkaboodle in reply to LiLuMi]

Yes, you’re absolutely right about the original purpose of the post. I noticed some inconsistencies in the comments, so I thought it best to write a summary about that. Your personal experiences contributed a lot to this conversation.

HA. I hadn’t heard that example, but that pretty much sums it up: misinterpretation, misunderstanding, promulgation, ineffective action. The science of masks is another example that I described earlier.

Sorry, Elle2090 , for changing the topic. I will be quiet now.

[romaluna2015]

Hi Elle,

My daughter’s encephalitis was mainly caused by covid 19.

I hope you continue to improve and all the very best d

[kitnkaboodle in reply to romaluna2015]

Hey, just curious, what type of test confirmed that for your daughter? There was speculation that COVID caused my E, but I tested negative 8 times in 6 different ways over 4 months.

Thanks,

Kit

[romaluna2015]

Sophia had covid before any other virals were diagnosed . We knew sophia had covid before transfer to ICU in another children’s hospital. Although they didn’t confirm it was mainly covid they did mention it a fair few times in conversation that they felt it was mainly covid related. Sophia was one of only 20 in the whole of the Uk to have encephalitis linked with covid .

[alpappy]

I have the same as you and the vaccine made me foggy for a few days so am very careful not to get it. I had a blood test and have very high antibodies vs the spike protein so am little reassured but this virus does produce some encephalitis like symptoms so please be careful and try get blood tests too Dr Alan Queenstown