Long COVID, Long-Term Lyme and More: Mystery Diagnosis Update 

It's not this bad for everyone. Most people who are diagnosed and treated early recover fully, but an estimated 10-20% never recover and develop lifelong chronic illness.

Hi, Renee. Thank you for replying and for sharing so much information. I am sorry you've had to go through everything you're going through. It's a tough run for those of us with these problems. I do hope that as more people talk about "long COVID" and realize how it manifests, they'll be more thoughtful about "long Lyme." I'm devastated that what is effectively a kind of politics has inhibited patient care and research. I'm glad that the MCAS information was helpful to you. Something tells me that a lot more people may have it than know it, and it's great that laboratory tests can identify factors to demonstrate that people have it, so it's not as challenging to diagnose as some other rare and poorly understood illnesses. I had a dog growing up-a Yorkshire terrier whom I've always thought of as my little brother. I have wondered if I could have possibly acquired Bartonella "from him" when I was young (it would have been from a tick or a flea, not really from him), but it just have easily could have been from playing outside, playing with friends' pets, or so many other situations. Ultimately, it doesn't matter. Anyone who contracts any infectious disease ends up with a health problem that ultimately usually is not anyone's fault. It happens because of bad luck, naivety about exposure, or sometimes reckless behavior--but it's still just blameless health problems that need and deserve to be addressed by medical providers to the best of their abilities. I really appreciate you sharing so much personal information. I really believe that doing so helps us to consciously work through the emotional challenges that comes with chronic health problems, and also communicates to others that these things are real and should not be regarded with disdain and shouldn't be considered taboo. Everyone deserves wellness. Science is not perfect. It's always evolving, and medical science still is in the dark ages about a lot. So we need to get information out there, share our experiences, and help to drive research and treatment in the directions of people who need help.

@@DavidMichaelCommer Yes you are so right and I fully agree, sometimes I get treated so badly by people and doctors that I just want to crawl under a rock and hide forever, but if I do then what? People and doctors who are afraid or don't understand try to run from the facts by saying things like; You don't "look" sick or your just "depressed" or its "fibromyalgia" or You're too "fat" or things that have no rhyme or reason, the reality is that if you don't have your health you don't have anything. I really would like to get All doctors educated to be able to clinically diagnose Lyme and its coinfections in its early stages and to understand that the testing is just too flawed to rely on definite answers, as well as have a proper protocol for treatment as well as treatment that insurance and Medicaid will cover since it is often too late and all is lost financially by the time a diagnosis is made. It should not have taken 5 plus years to diagnose me or my kids, but this is the average and by then it's chronic and as WE know it is so difficult to treat, and has affected other organs, every day becomes a mystery and not a fun one! I do think so many more people have Lyme and coinfections than what is talked about or recorded, especially since most are misdiagnosed by uneducated doctors and lost in a flawed medical and political system. Lyme is a pandemic, if only it was treated as seriously as covid, I truly hope the cytokine scare and research advance the treatment for Lyme, I wish so much I could do more to wake up the world to this horrible parasitic/bacterial/cytokine storm nightmare. By the way, our dog that we got this from is a Yorkie weird huh! lol hes still a big part of our family. I apologize that I didn't see your response sooner its been a rough week, but I appreciate that you took the time, you truly made my Day, Thank You! - Nina

I will share as much as I can, I am not afraid... I can't be afraid of that, I have lost everything to this ..so nothing to lose. If I can help others listen to their body/symptoms, fight for their lives and advocate for themselves, then it is worth more than all the stars in the sky!

Hi, Cate. Thanks for your comment. I'm doing pretty well, thank you. I think from time to time about posting updates, but I'm really never sure if they are of any benefit to anyone. A lot of people have found my original 'mystery diagnosis' video through RU-vid's algorithm, but very few watch any of the follow ups. I'm not exactly sure what updates I gave in this video, but as of now, I began Xolair treatment for my mast cell activation syndrome (MCAS) about five months ago, and it has made a tremendous improvement in my well being. Xolair is a biologic medication that is injected monthly. As I understand it, it effectively plugs up *almost all* allergic receptors in the body, ending most allergic reactions. As a result, I've been able to exercise rigorously without anaphylaxis for several months, and that's an absolute godsend and a life changer. I am also much less reactive to heat that I have been for at least a decade, and so, so far, I have been able to spend more time outside than I have in many years. (Washington, D.C. is a hot city, and even though it's only June 10, we've already had 20 or so days above 90 degrees, with over 75% humidity.) The Xolair has had the added benefit of making my spring allergies less severe than...well, as far back as I can remember. I usually feel sick, like I have a very bad cold, from April through about July, and I also lose my hearing completely in my left ear during this period every year. This year, I've had no sinus congestion at all, and I can even smell flowers blooming all over the place, which is a crazy revelation to me because I never knew flowers are so fragrant. Honestly. I've always had to stick my nose in flower blossoms to smell them, but now I just get blasted with fragrances every time I turn a new corner. It's really crazy so me. I still have weird health issues, though. Things are not perfect. I've had migraine-like headaches and waves of nauseousness over the past two weeks, and my left leg has been behaving strangely and hurting. But these are odd quirks of a sort I've had all my adult life, and the most life-affecting of my health problems have either left the building or else are on a nice long vacation, and I'm really happy about it! I hope you are well! Thank you for checking in.

Thanks for the response, and the new treatment sounds amazing. Your not being around suggested a bad spell or an improvement, and I'm glad it's the latter. Wow, great that you can smell flowers now! I planted three rose bushes in my garden just for their scent. Sinus problems are awful and I'm glad they're alleviated. How do you cope with that heat? Well, we grow where we're planted, I guess: it's what we're used to. But a blessing that you can adapt to it better now. I'm in South East England and anything over 20 degrees makes me grumpy, haha. I went to Virginia, USA, once and the humidity just about killed me. Hmm, I know the feeling of always some symptom or another. My leg's been hurting too, and I'm thinking it's restless leg syndrome. I'm someone with undiagnosed illness, but because I have trauma issues everything is put down to my anxiety and unhappy living situation. I had the big bullseye tick mark about 15 years ago, but didn't even know about Lyme then. As I'm off work with mental health, I just try to live with the body collapsing on me: nausea, vertigo, breathlessness, fatigue, gut issues. Anyway, enough of that. I'm just glad after reading about your health problems that a lot of your suffering has been alleviated. May it continue! Take care.

@@catem3102 Haha...I grew up in Virginia, a half hour northwest of Washington, D.C. D.C. is hotter than the part of Virginia I'm from because the city architecture holds and radiates heat, and because it's naturally a swamp, and so it just holds humidity like a terrarium. Magnolias and other hot-weather plants grow here, but in recent years, people have also begun growing banana trees, palm trees and cactus in their yards year-round. It's classified as a "humid subtropical" climate, but I think we're on our way to becoming tropical. It's significantly hotter in the summers, and the summers are longer, than it was when I was growing up here in the 1980s. If my family weren't here, I would have moved by now. If you had a bullseye-shaped rash, then you were infected with Lyme disease without any question. Not all Lyme rashes are shaped like that, but those that are can't be caused by anything else, and Lyme is a bacterial infection that has to be treated. It is very much like syphilis in nature. It's the same class of bacteria (spirochete), and its pathology is a distinct three-phase process. First, you get infected and usually but not always will see a rash. Then the rash will go away and you may or may not have a flulike illness. After that, most infections become latent and asymptomatic--they "dive" deep into your tissue and reproduce there, feeding on your body's resources for 5-15 years before causing gradual central nervous system and joint deterioration. In some cases, they also can cause fatal heart conditions. This is what happened to me. As complicated as my Lyme diagnosis and treatment processes were, I was diagnosed with late-stage disseminated neurological Lyme--which is not controversial--and not the more ambiguous and very controversial "chronic Lyme" diagnosis. Both cause profound chronic illness, but the first is well documented scientifically and understood, and the second is a minefield of disagreements and controversies and prejudices and shaming patients. It's also REALLY important to understand that, just like syphilis that goes on for years untreated, Lyme disease and some other infectious diseases can be the direct cause of anxiety, depression, mood disorders, cognitive decline and even psychotic episodes in some people. Yes, a lot of doctors will dismiss physically ill patients assuming that a mental illness or emotional disturbance is causing them to experience phantom physical symptoms. Doctors *must* understand but rarely consider that physical health problems, including some infectious diseases and including inflammatory diseases, can be the *causes* of some profound mental health problems. They come as a package deal. And in these cases, if a patient has an infectious disease and the illness is assumed to be a psychological manifestation, medicating with psychotropic drugs may (or may not) improve the mental symptoms but it also is a Band-Aid that covers up and hides a serious infectious disease that must be treated with antimicrobials. I'm not a person who thinks every complicated health condition is actually Lyme disease, and I get pretty frustrated with people who do always jump to that conclusion. I've learned, though, that in the case of infectious diseases, it's really, really, really imperative not to ignore them. In 2017, my mother died from opportunistic infections that never, ever should kill people in this day and age. She had diarrhea for a long time that just would not relent. She went to several doctors and to the emergency room several times. She kept losing weight. Every doctor told her the same thing: You have irritable bowel syndrome; go home and take Immodium AD. She was 5'4" and her weight dropped to 95 and then to 85 and then to 76 by the time doctors would finally admit her to the hospital. When they did, the intensive-care unit charge doctor yelled at my father for letting my mother become so underweight. It was infuriating. She started bleeding internally from a large ulcer that had formed. What happened was that she became so malnourished, bacteria that normally don't become infectious became infectious and ate a hole through her stomach lining. She lost a lot of blood. Then she got a blood clot in her leg and had to have a surgery to remove it. Then they told us that she had developed pneumonia that she contracted in the hospital days before. Then they told us that she needed to be intubated and put into an induced coma so that her body could recover. Then they couldn't take her off the breathing tube, and then eventually they had to and she died. This happened over Christmas and New Year's and she died on January 11. She was "actively dying" for two weeks, and it was all because 1) doctors ignored a serious illness that was diagnosed, just before she died, as either Crohn's disease or ulcerative colitis, and 2) as a result of ignoring that disease process, she became malnourished and vulnerable to opportunistic infections, and those killed her. She was 66 years old and my best friend. I didn't lose my mom to Lyme disease, but I did lose my mom to medical neglect, and I myself suffered throughout my 30s because of medical ignorance. We can all do better. If you had a bullseye rash years ago and were never treated adequately with antibiotics for Lyme disease, please do yourself a favor and find a competent doctor who understands Lyme disease and can potentially treat you, at the very least to find out if you can improve.