Manuel
Senior Member
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- 105
I am sharing with you this protocol, which I have named โ๐๐ฎ๐ข๐ณ ๐๐ซ๐จ๐ญ๐จ๐๐จ๐ฅโ, because both my father and I developed hypophysitis and meet the criteria for Myalgic Encephalomyelitis (ME/CFS). This protocol is designed for patients with Long COVID, ME/CFS and post-vaccinal syndromes, with the intention that it can help other patients like me to improve their quality of life. I ask that you share it as much as possible with other patients and doctors who treat these diseases, so that we can help as many people as possible.
I have been ill with ME/CFS since I was infected with EBV in 2013, and fortunately, in my case, the appropriate tests were done to detect ๐ก๐ฒ๐ฉ๐จ๐ฉ๐ก๐ฒ๐ฌ๐ข๐ญ๐ข๐ฌ. Because of this disease, I had to abandon my medical studies in third year, and I spent eight years without being able to leave the house much, looking for how to improve my health and understand the causes of these pathologies. Thanks to this protocol, I was able to resume my studies, completing a professional training cycle in Clinical and Biomedical Laboratory Technician, and then I went back to university to study Biology in order to dedicate myself to research. Currently, I am in my third year of Biology and in these last three years, this protocol has allowed me to return to sports, performing intense weight training without experiencing post-exertion fatigue. In addition, I went from eating only chicken and potatoes, which was the only thing I could tolerate, to having most of my intolerances disappear, being able to eat almost anything, including pizza, hamburgers and legumes such as lentils. I even no longer have outbreaks of Parvovirus B19 and EBV reactivations.
When I wrote the article comparing ME/CFS, Long COVID and post-vaccine syndromes, with the symptoms developed by some patients treated with ๐ข๐ฆ๐ฆ๐ฎ๐ง๐ ๐๐ก๐๐๐ค๐ฉ๐จ๐ข๐ง๐ญ ๐ข๐ง๐ก๐ข๐๐ข๐ญ๐จ๐ซ๐ฌ (๐๐๐๐ฌ) who carry susceptible HLA-II alleles, I never imagined that my father would later receive the same treatment to cope with the cancer he developed.
After several doses of ICIs, my father began to experience fatigue, dysautonomia, diarrhea, dysphagia, gas, cognitive impairment, slowed thinking and speech, nasal congestion, runny nose, and post-exertional fatigue, among other symptoms. It was as if the ICIs โrecreatedโ the characteristic symptoms of MS, Long COVID or post-vaccine syndromes 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 ๐๐๐-๐๐๐๐ allele, as do I, who am homozygous for that variant. After the diagnosis, he was prescribed hydrocortisone replacement therapy and, in just 24 hours, most of 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 gradually withdrawn because morning cortisol tests apparently showed normal levels. As I have discussed in other texts, 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 with ME/CFS, Long COVID or post-vaccine syndromes who have had their cortisol levels measured or had a pituitary MRI performed in the early stages of their symptoms. In my case, the HLA-DR15 allele made me vulnerable to EBV infection, resulting in an inability 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 this has been linked mainly to those who carry certain susceptible HLA-II alleles, such as HLA-DR15.
Therefore, both my father and I, sharing the HLA-DR15 allele, ๐ก๐๐ฏ๐ ๐ ๐ ๐๐ง๐๐ญ๐ข๐ ๐ฌ๐ฎ๐ฌ๐๐๐ฉ๐ญ๐ข๐๐ข๐ฅ๐ข๐ญ๐ฒ ๐ญ๐ก๐๐ญ ๐ฅ๐๐๐๐ฌ ๐ญ๐จ ๐๐ง ๐๐ฑ๐๐ ๐ ๐๐ซ๐๐ญ๐๐ ๐ข๐ฆ๐ฆ๐ฎ๐ง๐ ๐ซ๐๐ฌ๐ฉ๐จ๐ง๐ฌ๐ ๐ญ๐จ ๐ฌ๐ฉ๐๐๐ข๐๐ข๐ ๐๐ง๐ญ๐ข๐ ๐๐ง๐ฌ. In my father, this hyperactivation was induced by treatment, whereas in my case it was a consequence of infection. I do not know which is 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, since both HLA-II alleles that we possess 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 continues.
Having said all this, it is important to note that many patients with ME/CFS, Long COVID or post-vaccine syndromes may think that ๐ก๐ฒ๐๐ซ๐จ๐๐จ๐ซ๐ญ๐ข๐ฌ๐จ๐ง๐ replacement therapy alone should improve all their symptoms, and this is not the case. This is evident both in my father's case and in other patients treated with ICIs, as these patients do not face the other consequences caused by a chronic infection. Therefore, patients with ME/CFS, Long COVID or post-vaccinal syndromes who have permanent pituitary damage, in addition to receiving hydrocortisone replacement doses, should also consider ๐๐ง๐ญ๐ข๐ฏ๐ข๐ซ๐๐ฅ ๐ญ๐ซ๐๐๐ญ๐ฆ๐๐ง๐ญ to prevent viral reactivation and reduce the viral reservoirs responsible for their immune hyperactivation and autoimmunity.
Once again, I invite you to share this protocol with other patients and with physicians who treat these diseases. The more people who know this information, the more we can help others to improve their quality of life. As a patient my only intention is that other people with the same disease do not go through the same situation.
๐๐ข๐ง๐ค ๐จ๐ ๐ ๐ฐ๐ก๐๐ซ๐ ๐ ๐๐ฑ๐ฉ๐ฅ๐๐ข๐ง ๐๐๐ญ๐ญ๐๐ซ ๐ญ๐ก๐ ๐ฉ๐ซ๐จ๐ญ๐จ๐๐จ๐ฅ: https://x.com/manruipa/status/1841161052026749330
๐๐ญ๐ญ๐๐๐ก๐๐ ๐ข๐ฌ ๐ ๐ฅ๐ข๐ง๐ค ๐ญ๐จ ๐ญ๐ก๐ ๐๐จ๐ฆ๐ฉ๐ฅ๐๐ญ๐ ๐ฉ๐ซ๐จ๐ญ๐จ๐๐จ๐ฅ: https://drive.google.com/file/d/1FldpBBqfmbNEfPD-FeDqwPdwuw0RQgWI/view?usp=sharing
๐๐ข๐ง๐ค ๐ญ๐จ ๐ญ๐ก๐ ๐ฏ๐ข๐๐๐จ ๐๐ฑ๐ฉ๐ฅ๐๐ข๐ง๐ข๐ง๐ ๐ญ๐ก๐ ๐ฉ๐ซ๐จ๐ญ๐จ๐๐จ๐ฅ (๐ข๐ง ๐ญ๐ก๐ ๐ง๐๐ฑ๐ญ ๐๐๐ฐ ๐๐๐ฒ๐ฌ ๐ข๐ญ ๐ฐ๐ข๐ฅ๐ฅ ๐ก๐๐ฏ๐ ๐๐ง๐ ๐ฅ๐ข๐ฌ๐ก ๐ฌ๐ฎ๐๐ญ๐ข๐ญ๐ฅ๐๐ฌ): https://www.youtube.com/live/kJ3RRoMfJJk?si=DvFQbl7QhVJ5890C
๐ ๐จ๐ซ๐ฎ๐ฆ ๐ญ๐ก๐ซ๐๐๐ ๐ฐ๐ก๐๐ซ๐ ๐ ๐๐ฑ๐ฉ๐ฅ๐๐ข๐ง ๐จ๐ฎ๐ซ ๐ฅ๐๐ฌ๐ญ ๐ซ๐๐ฏ๐ข๐๐ฐ ๐๐ซ๐ญ๐ข๐๐ฅ๐: https://forums.phoenixrising.me/thr...ng-covid-and-myalgic-encephalomyelitis.92286/
In the ๐๐จ๐ฅ๐ฅ๐จ๐ฐ๐ข๐ง๐ ๐ฉ๐จ๐ฌ๐ญ I attach what I take myself.
Soon I will be uploading more information in this account and in the Foropacientes account, including recommendations on which low immunogenic foods are more suitable to start with, I hope it will be helpful!
PS: If you have SIBO you should treat it before starting the protocol.
๐๐๐ซ๐'๐ฌ ๐ฐ๐ก๐๐ญ ๐ ๐ญ๐๐ค๐:
๐๐ซ๐๐๐ค๐๐๐ฌ๐ญ (๐ ๐ญ๐๐๐ฅ๐๐ญ๐ฌ):
3 tablets of astragalus extract 500 mg each.
1 tablet of NAC of 600 mg each.
2 ginseng extract tablets 500 mg each
1 ubiquinol tablet of 100 mg each
1 tablet of multivitamin CellDefense
๐๐ฎ๐ง๐๐ก (๐ ๐ญ๐๐๐ฅ๐๐ญ๐ฌ):
3 tablets of astragalus extract 500 mg each.
1 NAC tablet 600 mg each
2 ginseng extract tablets of 500 mg each
๐๐๐ญ๐๐ซ๐ง๐จ๐จ๐ง ๐ฌ๐ง๐๐๐ค (๐๐ซ๐จ๐ฎ๐ง๐ ๐๐:๐๐):
1 ginseng tablet 500 mg each
๐๐ข๐ง๐ง๐๐ซ (๐๐:๐๐):
2 tablets of astragalus extract 500 mg each.
1 NAC tablet of 600 mg each
๐๐๐๐จ๐ซ๐ ๐๐๐๐ญ๐ข๐ฆ๐ (๐ ๐ก๐จ๐ฎ๐ซ ๐๐๐๐จ๐ซ๐):
2 tablets of melatonin retard of 1.99 mg each
๐๐๐๐ข๐๐๐ญ๐ข๐จ๐ง๐ฌ:
2 Valtrex tablets 500 mg each every 8 hours.
1 tablet of Aerius (desloratadine) per day.
๐๐๐ฆ๐๐ฆ๐๐๐ซ that doses should be adjusted according to weight and always with medical follow-up. I weigh 93 kg and I am 1.83 cm tall, so it is essential that you take this protocol to your doctors so that they can adjust the doses and do the relevant analytical tests before and during the introduction of each treatment. Some supplements may interact with medications that you are already taking, so it is crucial to consult with a health professional. For example, astragalus decreases clotting and should not be taken if you are also taking anticoagulant treatments.
I would have liked to carry out a clinical trial with this theoretical protocol, but unfortunately we do not have sufficient funds and it could take years to complete all the treatments foreseen in the protocol. For this reason, I believe it is essential to prioritize the recovery of patients' quality of life and, at the same time, to continue to carry out these trials in parallel if we manage to obtain the necessary financial resources.
https://x.com/manruipa/status/1810664159354192253
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