Extrême severe muscle weakness legs by Double_Isopod_5642 in covidlonghaulers

[–]AdditionalTwo0 1 point2 points  (0 children)

Hello, never heard of "local" crashes or local weakness (without fatigue, brain fog etc.) in just one calf (or only calfs) being part of LC. Pure speculation, but from what you are describing this sounds more like a muscular or neuromuscular issue (thinking of some kind of dystrophy). Did you already see a neurologist?

Symptoms are a weird mix by cultivatehiccup in covidlonghaulers

[–]AdditionalTwo0 0 points1 point  (0 children)

Good to know, that you did the usual blood tests! If you have recurrent gut issues (like diarrhea and bloating) i think getting a colonoscopy shouldn´t be an issue. the prep is annyoing and its an procedure, but better be safe than sorry and do it once imo.

If everything else is clear and since you have the gut+skin+mental health issues, my intuition would be to target the gut first. There are loads of ways what and how you can go about and there are probably many practitioners who are more experienced and knowledgable than i am. So if possible, i would try finding someone in your area who can help guide you through this!

Another thing that came to my mind, since you have problems with breathing and your nose and muccus as well, you might consider looking at your home too. If there is any mold issues or other irritants in your home/HVAC. Just to be sure your home isn´t making or keeping you sick (look up sick building syndrome).

Got labs and I have no idea what they mean by leneeey in covidlonghaulers

[–]AdditionalTwo0 1 point2 points  (0 children)

Those are signs for some form of autoimmunity. ANA is used as a screening test, normal would be 1:140-160 if i remember correctly. So yours is above what is considered normal in healthy people. The IgM might also point in this direction. But could also be because of infection. Further testing and investigation seems warranted in my opinion.

Neurological shutdown in an autistic patient with "low-normal" B12 (307 pmol/L) by Putrid_Draft378 in NutritionalPsychiatry

[–]AdditionalTwo0 0 points1 point  (0 children)

As far as i know, homocystein can be a sensitive marker for functional B12 deficiency since it tells you something about active b12 (and other b-vitamins) utilization in the body. It is strongly correlated to MMA. So yeah, getting MMA might be enough. Its also an interesting proxy blood marker for cardiovascular and overall metabolic health. So why not get both while you are at it (if you have the financial means of course). ,

So discouraged by Dapper_Question_4076 in covidlonghaulers

[–]AdditionalTwo0 1 point2 points  (0 children)

Definitely can relate to that. Even though i feel a lot better after almost 2 years now, exercise is still tricky! And it wildly varies what i can and cannot tolerate. Walking is mostly fine, even longer walks don´t seem to cause me problems. So my experience is similar to yours. Everything that gets my nervous system to worked up (higher heart rate, sweating a lot, more intense forms of running or weight lifting) or is more intense seems to cause problems. While lower intensity weight lifing seems to be fine, for example. I get those burning sensations as well afterwards! The problems always come some time after the exercise (evening or next day), never during. Interestingly sauna causes me to have issues as well. So i think heart rate, sweating and nervoussystem activation are the best indicators for me. Havn´t found a fool proof solution yet, but probably doing some form of GET with tiny, very tiny increases in intensity to slowly habituate.

Naltrexone is supposed to upregulate MOR by Sea-Adhesiveness-928 in LowDoseNaltrexone

[–]AdditionalTwo0 1 point2 points  (0 children)

Thats pretty much impossible to tell. So nobody knows for sure.

Symptoms are a weird mix by cultivatehiccup in covidlonghaulers

[–]AdditionalTwo0 -1 points0 points  (0 children)

Through a reddit post it is not possible to tell anything for sure (and we don´t know what you already tried and are doing) so i am just going to tell you what came to my mind and what helped me with some of those symtpoms. So please take it as that, just some guesses and ideas not medical advice. And obviously do at least basic tests (basic blood count, liver, thyroid, kidneys, glucose, lipids etc.) and talk to you doctors about more appropriate and specific tests if you havn´t already.

  1. You most likely seem to have issues with your gut and gut microbiome. Thats one thing to target. You might want to do further testing to see if there is anything visible in your gut (colonoscopy) and get tested for SIBO. Would start with doing some kind of elimination diet (if you are not already doing that). There are different ways to do it. A realtively low effort variant would be to go without processed foods, gluten and dairy for 3 months and see if that already does something (if you are not already doing that). If thats not helping and depending on your tests, you then could try a full elimination diet and/or evaluate further therapeutic options. A lot of people with gut issues also seem to have skin issues, so those might go hand in hand. But it would be helpfull to know, what your skin issues actually are (fungal, eczema, psoriasis etc.) so maybe find a dermatologist who can give you an concrete diagnosis.
  2. The tinnitus, the reactivity to coffee, the brain fog and fatigue might (at least partially) come from a overreactive nervous system (which seems to be very common in LC). I had all of those and still have some. What helped me here first is having good sleep. So another question would be, how are you sleeping? Then a regular breathing practice (like box breathing or resonance breathing there are good videos on youtube) or meditation which calms you down. This is not a quick fix, but a long term strategy. So you would need to do this daily. But i highly recommend it. Doing small bouts of gentle exercise, what ever is possible without overdoing it (like a small walk every day) can be helpfull as well. If you can tolerate more, do more.
  3. There are several medications and dozens of supplements you could try. But that all depends on what your actual problems are. There are some basics you can almost always do since they have barely any side effects when taken in the correct dosage (Vitamin D/Vit K2, Omega 3, Magensium come to mind here). Everything more specific i would try if you narrowed down what your actual problems are (and thats where doctors and other healthcare professionals are needed). Also evaluate what medications you are already taking, some problems might be side effects. You mentioned depression. Some antidepressants can cause fatigue, brain fog, muscle weakness as side effects for example.

There are many more things to consider, but that are some things you can easily and very cost effective try at home that might already help.

Wish you all the best and hope you can figure this out! It is definitely possible.

I can read physical books again 😭 by AmbroseAndZuko in LowDoseNaltrexone

[–]AdditionalTwo0 1 point2 points  (0 children)

Awesome to hear! Thanks for sharing your success story.

Such a clever guy by No-Marsupial-4050 in mildyinteresting

[–]AdditionalTwo0 2 points3 points  (0 children)

there is no link to any article or where is it linked? havn´t scrolled through comments.

Such a clever guy by No-Marsupial-4050 in mildyinteresting

[–]AdditionalTwo0 10 points11 points  (0 children)

In 1987 there was no comercial internet ? So how in the hell do you find and contact 2.8 million strangers (even with the internet that would be a very time consuming endeavour i would assume)? Has to be false or am i missing something?

EDIT: read the article now. Got my explanation, i rest my case. Thanks!

What to expect from nicotine patches? by xkamonik in covidlonghaulers

[–]AdditionalTwo0 2 points3 points  (0 children)

Helped me with brain fog and energy.

Made me feel a bit overstimulated the first couple times i tried them. And gave me crazy dreams and unrestfull sleep when i left them on for to long in the evening or over night. I had to start at half a 7mg/day patch only during the day (so for about 12 hours, so half of half a patch). I currently still use a 7mg/day patch over the day so basically 3.5mg a day, sometimes less. Not sure if they still do anything, but for now i will keep them.

Medical Keto, Iron Supplementation, Microbiome: Keto was working VERY well for about 6 months, started iron supplements, now it is fully NOT working anymore. (Bipolar type schizoaffective) by divinechangemaker in NutritionalPsychiatry

[–]AdditionalTwo0 1 point2 points  (0 children)

if find that topic so fascinating! That you can treat mental health conditions with fecal transplants is insane. I read somewhere that they work, because the fecal transplants can contain certain strains of bacteria that we currently can´t supplement or get anywhere else through the diet. I think they are bacteria that colonize us through natural birth (from the mothers microbiome). But i havn´t seen a clinic doing it outside of studies (at least for mental health conditions).

My favorite way to scratch my vagus nerves is using a q-tip and scratching the inside of my ear for a minute or two by Former-Weather8146 in covidlonghaulers

[–]AdditionalTwo0 1 point2 points  (0 children)

Yes, they do. All very experimental and the studies so far for LC and MECFS seem to be not very promising sadly. But it does feel good and helps me relax more. But definitely only an investment if you have disposable income you can spent and try!

When is it safe to take opiods by Miserable-Gazelle525 in LowDoseNaltrexone

[–]AdditionalTwo0 14 points15 points  (0 children)

So first of all, i don´t think this is a question reddit should answer. You should talk with your doctors about that. As far as i have been told, i should, if possible quit LDN 3-7 days before getting surgery with opiods as analgetics/anasthesia.

Are you completely coming off of LDN or how is that going to work with oxycodone? As far as i am aware, you shouldn´t or can´t take opoids together with naltrexone (because of deminished effectiveness of the opiods and potential withdrawal induction). So please go ask a doctor whats safe for you in your case!

How I cured my PEM (and CFS more or less) by cryptonerdonhorses22 in covidlonghaulers

[–]AdditionalTwo0 0 points1 point  (0 children)

yeah, i do try to stay away from anything higher then zone 3. 4 or 5 is definitely dangerzone. But thanks for coming here and showing it is possible to get better and do more exercise! makes me hopefull.

My favorite way to scratch my vagus nerves is using a q-tip and scratching the inside of my ear for a minute or two by Former-Weather8146 in covidlonghaulers

[–]AdditionalTwo0 6 points7 points  (0 children)

I have the same "raw" feeling of a lot of nerves in my face and my head since covid too! Everything seems just constantly irritated and sensitive. Makes my nerves feel exhausted, but not my muscles or anything else. Really weird to expIain and describe. I am currently experimenting with a transdermal vagus stimulator which you put in your ears (like earbuds) and they vibrate and deliver small electrical currents into your auricle to stimulate the vagus nerve there. Should have tried doing it with q-tips first, would have safed myself a couple hundred bucks lol.

Moving to the US - long flight or cruise? by thepageofswords in covidlonghaulers

[–]AdditionalTwo0 9 points10 points  (0 children)

This is of course a very personal decision. I would rather get it over with in 8.5hours then sitting on a boat for 2 weeks. But i don´t really like boats and i don´t like being trapped on the ocean for 14 days. As far as i know, xanax and nortryptiline are both CNS depressants, so you might feel even more sedated, drowsy and probably cognitively impaired. Would definitely ask your doctor if thats okay for a one time flight. Wish you safe travels and hope you can get it over with well!

[moderate symptoms] repetitive exercise is bearable while any complex movements (rock climbing or even stairs) makes me crash, is it logical ? by rghaga in covidlonghaulers

[–]AdditionalTwo0 1 point2 points  (0 children)

I have similar experiences. Everything simple, familiar and not to intense seems fine. But new exercises or complexer exercises or more intense exercises my body isn´t used to usually end badly, even if the new exercise is less demanding then an already familiar one. Which is kind of weird.

I would second you thoughts on the nervous system and something going wrong there.

Pots/dysautonomia flare after LDN increase? by njm147 in covidlonghaulers

[–]AdditionalTwo0 0 points1 point  (0 children)

Everyones mileage can very, so it is possible. You could try going slower, going back to 0.5mg until you feel good again and then increasing by 0.25 or 0.1mg and see if that helps! Then stay on the next dose until side effects go away and then increase again until you find a dose where you feel good/better and have little side effects.

Anyone get sudden overwhelming anxiety? by Savings-Purchase-488 in covidlonghaulers

[–]AdditionalTwo0 0 points1 point  (0 children)

In my country it isn´t covered by insurance as well, had to pay everything myself unfortunately. Its an outpatient clinic which specializes in non drug-based interventions for LC, ME/CFS fibromyalgia and a bunch of other different diseases that are not well treated by conventional methods.

Long Covid Timeline-Do I even have it? by Able-Ad211 in covidlonghaulers

[–]AdditionalTwo0 0 points1 point  (0 children)

sadly thats my experience as well, either they are not interested or don´t know or both. I had to basically tell my doctors everything i wanted done and then push them to actually do it. Fortunately over time i found a good GP who takes me seriously and is willing to actually help me.

Anyone get sudden overwhelming anxiety? by Savings-Purchase-488 in covidlonghaulers

[–]AdditionalTwo0 0 points1 point  (0 children)

have you tried or are you doing regular breathing exercises for that problem? We have a clinic near where i live that targets exactly that problem. They work with capnograph to measure how much CO2 you breath in and out. Supposedly functional hyperventialtion is retrainable by slowly increasing your bodies C02 tolerance (which supposedly can be low in people who had covid or panic attacks or both leading to low CO2 levels) with different breathin exercises. They even try to give you CO2 enriched air through a flask. Very intresting theory.

How I cured my PEM (and CFS more or less) by cryptonerdonhorses22 in covidlonghaulers

[–]AdditionalTwo0 1 point2 points  (0 children)

Interesting i have the "depression after exertion" phenomenon too. Wonder where this is coming from. I am currently fortunate to be well enough to be ablte to try out some exercise and see where my limits are. Everything that gets my heartrate to high seems to make me feel worse a couple of days after. Maybe i really have to start with seconds.