More long Covid

[WiscGuy]

Another article on long Covid. Nothing new, but still it's striking to see the similarities with B12 with neurological symptoms. Especially the problems with doctors.

hcplive.com/view/no-one-lef...

[Nackapan]

Walking through mud with cement in your veins.

Thats a description very apt to one if many symptoms I have with b12 def/PA

All very worrying 😟

[DBHeadcase]

I had severe covid 19 in August 2021. 4 weeks in hospital with 10 days in ICU. not only did I have covid pneumonia I also had Bacterial Pneumonia and a fungal infection that I contracted in ICU. i am B12 deficient and told them as much when I went in. When they wanted to put me on a ventilator I insisted they give me my B12 injection. Within 24 hours my O2 sats improved so much that ventilators were never mentioned again. 5 days later I was on a normay ward. Throughout my recovery, progress has been concurrent with my intake of B12. I developed heart failure as was on 8 bottles of ambulant oxygen a week. Now I don't use any. I can how swim 1000 metres at a time where previously 2 lengths was all I could manage. The GP's refuse to give me more than one injection of B12 a month so I source my own supplies ans self inject weekly. I would suggest to anyone suffering from long covid to try B12 injections.

[Cherylclaire Forum Support]

"No-one left behind" - I like that.

There was a mention of 200 symptoms .... wonder where that list is printed ? I am interested in how close a match this is with B12 deficiency.

Martyn Hooper, the founder of the Pernicious Anaemia Society, identified similarities there - so evident to him that he contacted medical professionals to point this out.

If anything does eventually get discovered re Long Covid treatment, there's always the possibility that it may help us too in some way - no-one being left in front either.

[JHEW0836]

I had COVID in December of 2021 but did not have the obvious symptoms and therefore was not tested. Over a year later and after a million tests and still no answers, I was researching one of my many symptoms (pulsatile tinnitus) and discovered that a lot of my symptoms resembled B12 deficiency. Had my doctor test my B12 and sure enough, it was on the low side of normal (252). Since then, I have read articles online about how COVID may be interfering with how B12 is metabolized. I have been going to a long COVID clinic since September and no one there ever thought to test my B12. None of the specialists I saw thought to test it either. I have seen a neurologist, cardiologist, pulmonologist, gastroenterologist, immunologist and my family doctor, and not one of them recognized my symptoms as B12 deficiency. Now I would like my doctor to refer me to a hematologist to treat me, because it’s seems to GPs have no clue how often injections should be given. I’m on my second GP with this because the first one gave me two injections two weeks apart and then put me on monthly maintenance injections. The second one I’m going to prescribed 4 weekly injections and then once a month after that. I still think that I will need more injections before I get put on the monthly injection. So frustrating.

[WiscGuy in reply to JHEW0836]

My doctor offered to refer me to a "B12 expert" so I could get my questions answered. It turned out to be a hematologist. Shortly into my appointment he said he wouldn't be able to answer any of my questions, all of which had to do with treatment of B12 deficiency with neurological symptoms.

In retrospect, that makes perfect sense. According to the article "The Many Faces of Cobalamin Vitamin B12 Deficiency", in the peer-reviewed medical journal "Mayo Clinic Proceedings", referring to B12 deficiency with hematologic symptoms vs. B12 deficiency with neurological symptoms, the symptoms are different, the diagnostics are different, and the treatment is different. It's not surprising that a hematologist would not be familiar with diagnosis or treatment of neurological symptoms.

The main problem, according to the same article, is that medical schools have for decades been teaching medical students that B12 deficiency is always associated with megaloblastic anemia, or, in other words, pernicious anemia. And therefore, B12 deficiency = megaloblastic anemia = one disorder, that can be accurately, consistently diagnosed with lab tests, and all people with this one, hematologic disorder get the same treatment, which is loading doses of B12, followed by one injection every two or three blue moons, and new blood tests tell you when the patient is"cured". They know nothing of what amounts to a separate population, with completely different symptoms, who are diagnosed through a completely different process (clinical diagnosis), and receive a completely different treatment (injections every other day or twice a week for at least 2 years). So, from that point of view, it's not surprising that we (us and the doctors) are in the mess we are in.

[Cobalt1312 in reply to WiscGuy]

Thanks for your hard work WiscGuy! It takes a lot of effort to follow-up on this stuff you're doing, and we're all the beneficiaries!

[JHEW0836]

That is very interesting. I saw a neurologist after I told the long COVID clinic that my B12 was low and that I have tingling in my legs and feet along with pulsatile tinnitus. He did some testing on me which was normal and told me that my B12 was still in normal range. I think my tests were normal because I caught the deficiency before serious damage was done. I was hoping a hematologist would be more knowledgeable than the neurologist I saw.