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Long Covid / ME/CFS and chronic diseases: Knowledge transfer can build bridges - e il mondo cambierá - and the world will change

Suddenly it was there, the day X and nothing worked anymore

My life was completely turned upside down.

I would be very happy if you would take a few minutes to read my story for you.

After all, I loved my job as a strategic consultant for communication and marketing, that was me and I put my heart and soul into it. I had built up my business “MehrLot Digital” so painstakingly and lovingly over the years and had also registered MehrLot Digital as a brand.

Nothing worked anymore.

Severe CFS, MCS, fainting, vision problems, sleep disorders, nothing tolerable to eat and drink, dizziness attacks that sometimes caused me to fall with bruises and injuries, severe inflammation, increase in other REAL allergies (in addition to BHT, BHA, TBHQ, PEG, dodecyl gallate, citric and sorbic acid, pollen (IgE), food (IgE)) + countless massive intolerances, orthostatic hypotension coupled with cardiovascular problems (even though I do NOT have high blood pressure or diabetes mellitus), severely altered gut microbiome/leaky gut/E.- Coli/Helicobacter, cardiovascular problems, shortness of breath, pronounced allergic asthma, tinnitus, loss of speech or inability to understand when I was exhausted and tired, severe anaphylaxis, intolerances and allergies to all foods/cosmetic and chemical products/xenobiotics/pollutants, massive “symptoms of poisoning”, countless intolerable medications, some of which were severe and life-threatening. (ICU, ambulance service, emergency), angioedema, massive muscle complaints and suddenly unexplained severe “rheumatic attacks”, MS and Fabry disease symptoms, bleeding problems, “loss” of my handwriting and reactive viruses (EBV/HHV6).

In 2022, I had to take the difficult step of giving up my self-employment completely, I sold my motorcycle, we put my bike and hiking clothes in mothballs, but I always kept my camera, canvas, paint box and my beloved books were always in my field of vision and within reach, so that they would always remind me of my inventiveness and creativity and always keep the door open for me to return there with passion.

But now it was just a matter of baking a gluten-free bread that I could tolerate, because all the ingredients had become intolerable. Countless baking attempts failed, because how were we supposed to make bread out of (fine) rice flour, water and a little cream of tartar (unfortunately, there were no other ingredients left at the time), and the bread just didn't want to rise from the fine flour, no matter how much we talked the dough into it.

I couldn't even think about fruit, vegetables, fish, lean meat or a tolerable tea and I was glad that my body accepted the iceberg lettuce. I had always treated my body with care, eating healthily and always with a positive attitude, a smile and a strong faith. But my body didn't seem to care about any of that.

Or did it in the end?

A long, hard and sometimes tearful time lay ahead of me, but my body benefited from the fact that I had often in my life anchored mental and emotional strength, a firm belief, will to survive, patience, discipline and a healthy lifestyle as firm pillars in my own “ecosystem”. Even when my body repeatedly “punished” me with severe inflammation, exhaustion, relapses, attacks and shortness of breath, I always told it that I still loved it and that we had to be a team on equal terms. I benefited from my positive coping strategies.

Meanwhile, I have become a “water expert” and drink my water from all “vessels”, i.e. water glass, espresso cup, wine glass, champagne glass, and thus give myself the feeling of being able to fully participate in life (a little survival trick that works). For many months, I turned my iceberg lettuce, my “failed” bread, a few gluten-free noodles and some lactose-free mozzarella to the left and then to the right, layered them on top of each other and then laid them crosswise again, so my meager food looked different every time and thus did not give me the impression that I was lost and that everything was over and done with. This strategy also worked, so I continued to fight with effort and discipline.

I trained my mind not to see myself as SICK, but as “not quite healthy”; this is a huge difference for the soul and has never let me fall into a depression. I recorded my own dream journeys on tape, practiced new meditation and breathing techniques, and was thus able to break the cycle in a positive way. Despite all the severe and (very) profound setbacks, the corners of my mouth are still turned up in laughter today, and I am proud of that, because I was also left alone medically, received countless rejections, had to put up with answers like “Google centers for rare diseases,” “we're not taking on any new patients,” “oh it's very complex, I can't help you with that,” ‘get back to us in a year and see if anything is possible.’ I had to spend a lot of my own money on laboratory tests and prevention, among other things, to protect myself and to get to the bottom of my problem, and I did get to the bottom of it...

Many small steps were necessary, patience, discipline and a positive will to survive.

Of course, there were always major setbacks, but I was only allowed to look forward and not back. A positive energy drove me to get to the bottom of these things and to understand why I reacted so badly to medication, xenobiotics and food, why my beloved dad had to die so suddenly and unexpectedly from “unsuitable” medication, why my grandma suffered from severe diabetes with leg amputation and onset of blindness from hydrochlorothiazide (HCT), why suffered from blindness, why there is insulin resistance in our family, why the topics of cancer, kidney and cardiological pathologies play such a major role and why I, although I have lived a healthy life, have always been slim and athletic, a non-smoker, no drugs, no alcohol, but always (even as a child) exposed to countless pollutants, pesticides, xenobiotics, had to take this path.

And so I made a virtue out of my “necessity”.

My body was very weak, but luckily my mind did not completely abandon me. When my physical condition and state of mind allowed it, I read worldwide studies and searched for all the open questions, parameters and compared various cases with my own case. I immersed myself deeper and deeper in this topic and developed an enormous passion for the topics of personalized medicine, PGX, pesticides, xenobiotics, genetics/epigenetics, nutrition, lifestyle, viruses, microbiome and the development of “survival” and appropriate (possible) prevention strategies.

The time had come and I had countless genetics determined and independently and at my own expense, I raised various relevant laboratory parameters such as all detoxification genetics (GSHs, mEH, MTHFR, NAT2, SOD2, CYPs...), IL6, TLR3 , IL2, IL10, PAI1, TNF alpha, NRF2, FOX, SIRT, proliferation rate, TH1/2 status, virus diagnostics, microbiome, albumin, amino acids, vitamins and micronutrients, and much more. I didn't have a suitable medical companion and couldn't afford to wait a year or two for a specialist appointment somewhere and lose an incredible amount of precious time. So I had to act in the here and now and “swallow” the bitter financial pill of my own high expenses.

Strategy development, communication, marketing, awareness, delving into complex issues, environmental, nutritional and pharmaceutical topics had already sparked my passion and curiosity earlier on, and I started reading the books by Medical Medium (Anthony William) – who is followed by many millions of people follow – to read, have been actively involved in a PK forum for many months and have delved deeply into the topic of personalized medicine, making my own case available to the scientific community by sharing my knowledge and work with them. I decided to take the topic of my final thesis “Personalized Medicine – a task for society as a whole” at the German Academy for Management with my marketing manager, completed various licenses to become a nutritionist and detox coach, and became my own epigenetics coach.

With each new finding and laboratory result, the elaborate comparison in studies and case studies and also countless chemical patents, I gradually put the puzzle together more and more. Anthony's books had already piqued my curiosity and made me want to get to the bottom of his statements on EBV and other viruses, pollutants and lifestyle. My curiosity drove me on and I convinced other friends and acquaintances who I knew had cancer, hepatitis and long Covid to join me on this (genetic + laboratory) path of determination and prevention. We had analogous parameters and genetics determined and it was unbelievable what “absolute” similarities we had - now we had to precisely compare the countless parameters, deletions, number of copies, genotype and phenotype, microbiome and there were incredible AHA effects and parallels.

And in case you're interested: I (unfortunately) still cannot tolerate fish, tea, countless types of fruit and vegetables and food, coffee, I react strongly to all chemical substances and odors and I cannot go hiking in the mountains, I am far from being able to tolerate medication, my reactive Epstein-Barr Virus remains stubbornly positive at my side every day. But I try to ensure that it leaves me enough room to live through appropriate measures and hard prevention, and I have already managed to significantly improve my microbiome on my own through sophisticated strategies and very conscious supplementation and have been able to successfully suppress many symptoms.

I am proud and happy with what I have achieved so far, but I still have a long way to go and I will go it.

I am endlessly grateful that I was able to walk this hard and rocky road together with my dear husband Cesare, who has always been at my side and had to cope with me in many a frightening situation (anaphylaxis, relapses, emergency breathing exercises, etc.). There are still many stones to be cleared, and we will continue to bravely walk this path together. Thank you, my darling!

I would also like to thank my dear friends Mario, Heiko, Tina, Katrin, Peter, Petra, Alex, Markus and Pierre. Our dear convent sister Sigharda in Würzburg, Professor Eric (whom I greatly appreciate for his know-how and his warm humanity), my Indian friends Shivendra and Samrat, Sundoz from Boston Childrens Hospital and the Finnish professor who unselfishly viewed and evaluated my MRI CDs. My professional dentist and her lovely practice team (who go to great lengths to ensure my safety), Anthony William (for his informative books) - through whom I have indeed been able to develop my own personalized and valuable strategies that have led me to significant improvement in my symptoms - thank you Anthony for this transfer of knowledge. My pharmacist, the professional (private) laboratory team (who always have to master the challenges of blood sampling from a safety point of view), our Italian butcher Carlo (who made it possible for my body to tolerate lovingly selected (organic) veal again), master baker Martin (who tried to work with me to make a tolerable bread, which turned out to be a huge challenge), Pastor Michael, my supervising tutor at the German Academy of Management, the service-oriented DAM team and many others (who made sure that I was not exposed to any unnecessary additional dangers and, of course, my firm and stable faith. And before I forget, I would also like to thank our many feathered friends, Gastone our neighbor's dog, the mouse family Speedy and our garden hedgehog Charlie for all the wonderful smiles they brought to my face when I couldn't leave the couch or my bed due to weakness.

A thousand thanks, because each and every one of you was and is an important part of my ecosystem and I am very grateful for that.

And don't worry, I too am laughed at and given mocking looks by some for wearing my mask, but that doesn't bother me in the least, because none of these people are in my shoes and really understand what it means to have no tolerable medication, to fight for every tolerable food, and to go down this path of all the deprivations. And just in case someone is wondering why I don't take cromoglicic acid, ranitidine, fexofenadine, ASA, heparin, pantoprazole, simvastatin, lidocaine, tranexamic acid, PPIs, NSA IDs, aciclovir, amoxicillin, paracetamol, morphine, procaine or metamizole then precisely for this reason, that I have already reacted severely to these medications with ADRs in the past and unfortunately these were not fun events.

Since I am more than shocked by the numbers of the already 400 million Long Covid sufferers (more than 1 billion are predicted by 2033) and the many millions of CFS/ME sufferers and chronically ill people, I want to make my contribution to the transfer of knowledge in order to be able to help many other sufferers worldwide. Because I sincerely hope that in the end, regions, cities and countries can be kept as stable as possible in terms of economy and health, and it is and remains a task for society as a whole and can only be successfully mastered in this way.

I will gradually fill my website (which I run purely privately) with new content on “Personalized Medicine - PGX - CFS/ME - Long Covid - EBV - Microbiome” and share graphics and analyses.

Take a look at the sections that interest you and if you have any questions, please contact me by e-mail.

I sincerely wish you all the best and please stay healthy.

Pace e Bene!

Your Birgit Bortoluzzi