New: Hypocortisolemic ASIA: a vaccine- and chronic infection-induced syndrome behind the origin of long COVID and myalgic encephalomyelitis

[Wolfgang Amadeus]

Good Article!

 

[Blazer95]

as always this may work for some, but not all. for me vitamin D has always been harmful. my calcitriol/calcidiol has always been out of balance since disease beginn.

does look like someone put thought into it though.

 

[Manuel]

𝐂𝐡𝐞𝐜𝐤 𝐘𝐨𝐮𝐫 𝐂𝐨𝐫𝐭𝐢𝐬𝐨𝐥 𝐋𝐞𝐯𝐞𝐥𝐬

Many patients with ME/CFS and Long COVID find that their cortisol levels appear normal based on morning tests alone. However, a single morning measurement does not reflect the entire circadian rhythm of cortisol. For an accurate assessment, it is crucial to perform saliva cortisol testing throughout the day, measure 24-hour urine cortisol, and test for ACTH levels or the presence of anti-ACTH autoantibodies.

Symptoms that could indicate that you may have hypocortisolism:
𝐏𝐞𝐫𝐬𝐢𝐬𝐭𝐞𝐧𝐭 𝐟𝐚𝐭𝐢𝐠𝐮𝐞: Constant fatigue, especially intense in the morning.
𝐏𝐨𝐬𝐭-𝐞𝐱𝐞𝐫𝐭𝐢𝐨𝐧𝐚𝐥 𝐟𝐚𝐭𝐢𝐠𝐮𝐞: Extreme exhaustion after physical or mental activities, even moderate.
𝐍𝐨𝐧-𝐫𝐞𝐬𝐭𝐨𝐫𝐚𝐭𝐢𝐯𝐞 𝐬𝐥𝐞𝐞𝐩: Feeling of not having rested well, despite getting enough sleep.
𝐆𝐚𝐬𝐭𝐫𝐨𝐢𝐧𝐭𝐞𝐬𝐭𝐢𝐧𝐚𝐥 𝐩𝐫𝐨𝐛𝐥𝐞𝐦𝐬: Nausea, abdominal pain or diarrhea, especially in the morning or in stressful situations.
𝐖𝐨𝐫𝐬𝐞𝐧𝐢𝐧𝐠 𝐢𝐧 𝐬𝐭𝐫𝐞𝐬𝐬𝐟𝐮𝐥 𝐬𝐢𝐭𝐮𝐚𝐭𝐢𝐨𝐧𝐬: aggravation of symptoms during physical or emotional stress.
𝐀𝐧𝐱𝐢𝐞𝐭𝐲 𝐚𝐧𝐝 𝐝𝐞𝐩𝐫𝐞𝐬𝐬𝐢𝐨𝐧: Increased tendency to anxiety or depression due to difficulty in handling stress.
𝐌𝐮𝐬𝐜𝐥𝐞 𝐚𝐧𝐝 𝐣𝐨𝐢𝐧𝐭 𝐩𝐚𝐢𝐧: Generalized aches and pains with no clear cause.
𝐇𝐲𝐩𝐨𝐠𝐥𝐲𝐜𝐞𝐦𝐢𝐚: Low blood sugar levels causing dizziness, weakness and irritability, especially between meals or after exertion.
𝐃𝐞𝐜𝐫𝐞𝐚𝐬𝐞𝐝 𝐥𝐢𝐛𝐢𝐝𝐨: Reduced sex drive due to the impact of cortisol on hormone balance.
𝐃𝐢𝐟𝐟𝐢𝐜𝐮𝐥𝐭𝐲 𝐜𝐨𝐧𝐜𝐞𝐧𝐭𝐫𝐚𝐭𝐢𝐧𝐠: Memory and concentration problems due to lack of energy.
𝐃𝐲𝐬𝐚𝐮𝐭𝐨𝐧𝐨𝐦𝐢𝐚: Problems in the regulation of the autonomic nervous system, such as variations in heart rate.

More information on hypocortisolemia in these diseases:
https://x.com/manruipa/status/1826252428213211182

Share it with other patients so they can understand their own disease.

#LongCOVID #PostVaccinalSyndromes #MECFS

 

[Manuel]

𝐇𝐨𝐰 𝐦𝐲 𝐟𝐚𝐭𝐡𝐞𝐫 𝐝𝐞𝐯𝐞𝐥𝐨𝐩𝐞𝐝 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 𝐨𝐟 𝐌𝐄/𝐂𝐅𝐒 𝐚𝐧𝐝 𝐋𝐨𝐧𝐠 𝐂𝐎𝐕𝐈𝐃 𝐚𝐟𝐭𝐞𝐫 𝐭𝐫𝐞𝐚𝐭𝐦𝐞𝐧𝐭 𝐰𝐢𝐭𝐡 𝐈𝐂𝐈𝐬
When I wrote the article comparing ME/CFS and Long COVID with the symptoms developed by some patients treated with ICIs who carry HLA-II susceptible alleles, I never imagined that my father would later receive the same treatment to cope with the cancer he has developed.

After several doses of Immune checkpoint inhibitors (ICIs), my father began to experience fatigue, dysautonomia, diarrhea, dysphagia, bloating, cognitive impairment, slowed thinking and speech, nasal congestion, runny nose, post-exertional fatigue, among other symptoms. It is as if the ICIs “recreate” the characteristic symptoms of ME or Long COVID by inducing immune hyperactivity and increasing the risk of developing autoimmunity in patients with susceptible HLA-II alleles.

Observing these symptoms, we suggested to the physician to check his cortisol levels. To our surprise, it was confirmed that he had developed hypocortisolism, something I had feared since I learned that he also carries the HLA-DR15 allele, as do I, who am homozygous for that variant. After the diagnosis of hypocortisolism, he was prescribed hydrocortisone replacement therapy, and in just 24 hours, his symptoms disappeared, leaving only some fatigue at night.

In my case, after my hospitalization in 2013, I also received cortisol replacement therapy due to my extremely low ACTH and cortisol levels, in addition to inflammation in the adenohypophysis detected by MRI. However, after a year of treatment, it was withdrawn because morning cortisol tests apparently showed normal levels. As I have discussed in another post, a single morning test does not give a complete picture of the circadian cortisol rhythm. Since then, I have not gone back on hydrocortisone, believing that my only problem was chronic EBV infection.

Unfortunately, I know of very few patients who have had their cortisol levels tested and had a pituitary MRI in the early stages of their symptoms. In my case, the HLA-DR15 allele made me vulnerable to EBV infection, resulting in a failure to control infected cells, causing chronic immune hyperactivity due to the constant presence of viral antigens. In my father's case, therapy with ICIs triggered immune hyperactivity by inhibiting immune checkpoints, allowing the immune system to attack healthy tissues and generate autoimmunity, with autoimmune hypophysitis being one of the most common manifestations. However, not all patients treated with ICIs develop these autoimmune diseases, and it has been linked primarily to those who carry certain susceptible HLA-II alleles, such as HLA-DR15.

Therefore, both my father and I, sharing the HLA-DR15 allele, have a genetic susceptibility that leads to an exaggerated hyperresponsiveness to certain specific antigens. In my father, this hyperactivation was induced by treatment, whereas in my case it was a consequence of infection. I do not know the other HLA-II allele that my father carries, but since I am homozygous for HLA-DR15, it is possible that I am at greater risk for this hyperactivation, as the two HLA-II alleles that we both carry are co-expressed. The difference is that, if there has been no significant damage to my father's pituitary, he could regain normal ACTH secretion after stopping treatment. In my case, as the chronic infection that triggers hyperactivation and autoimmunity against the pituitary persists, the problem will continue.

Having said all of the above, it is important to note that many patients with ME/CFS or Long COVID might think that with hydrocortisone replacement therapy alone they should get better from all symptoms, and this is not the case. This is evident in both my father and other patients treated with ICIs, as these patients do not face the other consequences caused by a chronic infection. Therefore, patients with ME/CFS and Long COVID who have permanent pituitary damage, in addition to receiving hydrocortisone replacement doses, should also consider antiviral treatment to prevent viral reactivation and reduce the viral reservoirs responsible for their immune hyperactivation and autoimmunity.

It would be extremely valuable to compare patients treated with ICIs who develop hypophysitis with those with ME/CFS or Long COVID who present with pituitary involvement. Our research group would like to explore this line and analyze other markers related to this pathophysiology, but currently we do not have the necessary funds to carry it out. If you know of any calls for proposals or any organization interested in funding us, we would be grateful if you could let us know. We are also open to collaborate with other centers.

Here is more information about the relationship between ICIs, ME/CFS and Long COVID:

https://x.com/manruipa/status/1826252428213211182

If you found it useful, please share it so that other patients can better understand their disease.

 

[beingsamiracle]

Interesting, I just started HC and will see how that goes. Based on your research, which antivirals are recommended for chronic EBV related CFS?

 

[Manuel]

Interesting, I just started HC and will see how that goes. Based on your research, which antivirals are recommended for chronic EBV related CFS?

The Lerner protocol with valacyclovir is usually recommended against EBV. In my case I have been on valacyclovir chronically for 6 years.