My Mystery Diagnosis: Muliple Sclerosis? Lyme? Anxiety? Just Crazy? 

Hi, John. Thanks for your kind words. I did move out of the apartment you see in the video as soon as I found a doctor who took my problems seriously, and she told me to get out of that moldy building immediately-within 30 days. I did, and my health improved pretty significantly within weeks. I’m not bitter, but I do feel frustration about the lost time and most of all about knowing that other people go through what I went through or worse all the time. The pain and suffering were nearly unbearable for me, and they can be too much for some people to bear. That so many people-the majority of treating physicians, it seems-don’t want to help patients in these sorts of predicaments is heartbreaking.

@@DavidMichaelCommer It is very likely that you have small fiber neuropathy, in addition to whatever else life has thrown at you, fyi. You should go get the skin biopsy testing done. The neurologist should not have stopped short on that. I have a similar story but also got the skin biopsy and it was positive and was the one thing that the mainstream medical community actually acknowledged as a "real medical issue of concern". I also have had positive testing for bartonella, relapsing fever, and borelia burgdorferi. However, the small fiber neuropathy bit is really important to know about if you have it and again, there were a bit too many similarities in your story to mine for me not to mention it. A lot of dr's sre not very knowledgeable about the condition and if positive you would need to go to a specialty triage clinics, like a university that has Drs that practice medicine on a research level and specialize in diagnosing uncommon conditions. I would also recommend getting an automatic functions test, also known as a tilt table test to screen for a condition called POTS or OH, you can ask your lyme dr about it and they will likely know some things about this stuff. I don't think that I have ever made a comment on RU-vid but hope that you see this message and that it ends up helping you with your health stuff :)

Thank you. That's very kind.

I'm sorry you have to go through this. :( I hope it gets better. As your doctor to order blood tests for your c3a and c4a complements and tryptase to see if they are normal. They're a little obscure insofar as what a regular internist would generally order, but they are all simple blood draws that could point you in the direction of something inflammatory at play if any of them is elevated.

Not all doctors, but too many, to be sure.

@@DavidMichaelCommer even with everything you have been through you are still not completely done with them and remain optimistic. I am in awe of your outlook on what has happened to you. I'm a little older than you and I wish I could get back to where you are. Love you.

Lynny Bishop hi I suffer with muscular dystrophy I went through depression n now have anxiety,it’s frustrating when everything I complain about my doc blames it on the MD thanks for sharing.,how r u doing?

MaryLynn same here🙏🏼

@@DavidMichaelCommer I have all symptoms.my MRI is normal.i have anxiety.is ms can detect through MRI

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D.J. Sky Thanks, D.J. I have written pretty extensively about my experiences and also about tickborne diseases and related health concerns. I haven’t scheduled face to face appointments with any of the doctors I saw over the years. I’ve considered it, but that would require time and money that I need for other things, and I believe the majority of those doctors would feel as if I were wasting their time. The ones who dismissed me were the doctors who didn’t really listen to what I said, but instead relied entirely on their various lab tests. Especially that first neurologist concluded after my MRI came back normal that all I needed was a vacation at the beach-and so I have a strong inclination that if I came back eight years later and told him I am much better now as a result of a proper diagnosis and treatment, I feel pretty certain in his mind he would determine that I had learned to relax or something. I say this because he thought in terms of multiple sclerosis, ALS or nothing at all; there was no room in his mind for anything other than those diagnoses.

DavidMichaelCommer , I just feel that sometimes doctors need to go back and read the Oath they took when they first became a doctor, to remind them why they chose the profession in the first place. If that makes sense. I'm speaking from my heart because of a horrible medical journey I've been on for the past three years that I feel could have been avoided if the initial surgeon treated me as a human being and not a paycheck for himself. You are a survivor, a warrior, and you should be very proud of yourself for enduring more than most humans could and be brave enough to spread awareness to others. I have always heard that when you can tell your story without crying, you have healed. I'm not there yet. Much love!

I agree with you completely. I also think the reality of how medicine works seriously complicates matters significantly. Some of the problems I see with the medical institution I would liken to institutionalized racism in the United States. It's real, but it's so integrally established that it's invisible to many people, and probably to most. My mother died in January in great part because of our medical system's failure, in my opinion. I won't get into it here. But the bottom line is that doctors are trained in such a way as to make them stone-cold diagnosticians and to have full faith both in their own diagnostic abilities, and in the body of knowledge that they know exists, to the extent that they don't acknowledge medical science and the medical textbooks with which they are taught are not all knowing. Most clinicians also are small-business owners, and so they have to prioritize time to the business interests of their practices, which eats into patient time and especially diagnosis. They're also political entities, and they defer almost absolutely to the medical boards that lord over them and hold the power to take down their careers at a moment's notice, and those medical boards defer almost absolutely to governmental public health agencies that I have learned are actually political bodies that operate based on political demands and financial interests at least as much as they live up to their charges of controlling and preventing diseases. Patients interface only with our doctors, and so we hold our doctors singularly responsible, but doctors themselves face a number of extraordinary pressures, and especially with respect to tickborne diseases--depending where those doctors practice--they sometimes risk their entire livelihoods simply to acknowledge that a patient has tickborne diseases and to treat them. They really do. All the years in medical school, the hundreds of thousands of dollars in school-loan debt, plus their high costs of business operations and malpractice insurance, makes many feel backed into a wall and seriously compromises their autonomy. That is not a valid excuse for violating the Hippocratic oath, but all of those reasons are real-world reasons why many choose to save themselves the hassle, the time and the high risk and simply do what they are told by authorities to do. I've spoken with doctors about this, and some have confessed that they've chosen to believe that by passing on one particularly difficult and potentially troublesome patient to another doctor, they've got more time and they've got no risk in treating hundreds of other patients who benefit from their services. As patients, we are of course inclined to say "but that's wrong; it's unethical, and it violates your oath," yet the *reality* is that doctors make this choice, and also that certain boards and agencies actually tell them the opposite--that a Lyme diagnosis and treatment would be unethical and violate their oaths. So this is the messiness of reality. It's not black and white, and I'm certain that no doctors who chose to medical school expected to end up mixed up with such political controversy. This happened years ago with lupus patients, as well; they were often told they were mentally ill but not physically ill, or that their minor physical ailments (as acknowledged by their doctors) were incidental or perhaps even psychiatric manifestations. The same happens to patients with other diseases now, including a variety of autoimmune diseases now linked to the Epstein-Barr virus (these include--incredibly but truly--lupus, multiple sclerosis, rheumatoid arthritis, type 1 diabetes, Crohn's disease, chronic fatigue syndrome and irritable bowel disease); many doctors simply dismiss these patients as head cases. Policies, public and private oversight, affiliations with various medical specialty associations, financial interests, and culture all influence why so many doctors are so limited in their abilities or their freedom to diagnose and treat a variety of illnesses.

DavidMichaelCommer, I truly believe that your calling in life is to be an advocate for patients to be heard! It is quite obvious to the quality of your passion, knowledge, and experience. Also, it certainly helps that you are amazing at the written word! You inspire me to dig deep and continue to find strength to face each day of uncertainty! Much love!

@@DavidMichaelCommer Hi David, I am so very sorry to hear about the loss of your Mother. She sounds like she was a very attentive, caring and intelligent Mom. I want to say, this comment you made is so profound and full of TRUTHS that very few people will take the time to articulate and express IF they are even aware or care about how people and things operate in the "medical community" and that includes the "governing bodies" as well as all of the other influencers. The same and more goes for the entire video... every - single - thing - you said is so important and SO *needed* to be said and *heard* . So, Thank You from the depths of my heart for speaking up and speaking out and putting in the energy to make this "feature film length" video as you put it... I hung on every word. I am a bit stunned and shaken because I've just watched your video and I have experienced every single symptom that you mentioned (as well as some others that are attributed to RSD/CRPS that came about after a hate crime that required me to have several reconstructive surgeries.. but even that could blend into all the other symptoms and then things just get even more confusing). When you mentioned the Bartonella scars and I looked them up, I almost started crying. All my life... just another "weird thing" with no rhyme or reason. I having been "existing" with debilitating illness for over 25 years. I've had much the same experiences with doctors as you, except I have not yet found someone that has figured out what is going on except for the RSD / CRPS (which happened after I was already "sick"). If you've made it this far in my comment, thank you for reading it. There's so much more I want ask and share with you but I don't want to overwhelm you. Thank You So Much for making this video and I hope your treatments have continued to help. I wish you *much* Health, Healing, Balance and Peace.

Thank you.

Thank you. I've made other videos intermittently. I probably will make another one soon because I have had a major improvement in my health after finding a new doctor, and I think the info is probably worth sharing. It's been a long journey, but right now I feel better at age 43 than I did at 33.

I'm so sorry you're going through all this. Don't give up on trying to get help. You may need to a lot of doctors before you find one who can help, but I bet you can find someone eventually. They may not be able to cure you or even to get you to 90 percent functionality depending on the root cause, but there are some thoughtful clinicians out there who are willing to think beyond the status quo who have helped a lot of people. Unfortunately, there are also a lot of snake-oil salespeople who exploit sick people, so you also have to stay wary.

Thank you, Joan. I am doing much, much better now. It has taken many years and I'm not 100 percent better...but I'm much better. I don't think it's "nonsense" that some people have an easier route to diagnosis and treatment than others. I think it's a case of uneven medical education, differences of medical opinion, personality and perspective differences among clinicians, some of whom are more orthodox and closed-minded than others, etc. But one thing I learned a long time ago, as exhausting and discouraging as it can be is this: If you go to a doctor who makes it obvious that they don't care or are not willing to invest time and real attention in your case, and yours is a difficult case, then accept that appointment as a loss, politely excuse yourself, and move along to a different doctor. Every practitioner is different, and many practitioners are by the book only, and unfortunately, that is often an insurmountable obstacle when it comes to addressing difficult and anomalous cases. But every human being deserves a chance at health and wellness, and there are doctors out there who are self-sacrificing and curious, and who will care and take the time at least to try to figure out what is going on. And at the same time, there are doctors who are financially predatory. So it is up to every patient and their loved ones who support them to exercise keen discretion and judgment, and to approach finding the right doctor for them like it's a job that requires a high level of analysis and decision making ability. Patients who go to a doctor and leave with hurt feelings and anger and stew in that without doing anything to move forward are going to contribute to their own suffering and do nothing to overcome it. I know this because I was one of those patients for years, before my mother rallied me to move beyond that stuck place. So I encourage others to do the same in my mother's memory and spirit.

I am glad that you're feeling better. I am so sorry to hear about your mother she sounded like a wonderful person. Thank you for sharing your story. Wishing you well. God bless you 🙏🏾

Thank you.

Thank you. I do hope so.

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Hi, Sheesh. I’m sorry you’ve got to go through so many challenges with your health. I have met and heard from many hundreds of people who share similar experiences. I suppose the thing that mystifies me most of all to this day is that all of us go from doctor to doctor seeking help-and that means that doctors see patient after patient who have similar complaints, and who are insistent their problems are physical, and yet some of those doctors don’t accept it. There are many reasons for that, and in most cases I really don’t think that it’s personal on the part of the doctor or even negligent so to speak; I do think they are practicing what they believe to be good medicine. Interestingly, I’ve learned from my psychiatrist of many years and also from other neurologists and neurophysiologists that physical and mental disorders and diseases can be directly caused by one another, in a physical sense. For some reason, physicians most often assume that patients’ health complaints whose causes can’t be determined by the blood, scans and other labs they order must be rooted in a mental health disorder. Somewhat counterintuitively, many psychiatrists end up as the ultimate dumping ground for sick patients whose doctors believe they are “sick in the head” and end up discovering that some of these patients’ apparent mental illnesses are caused by undiagnosed physical health problems that affect the nervous system or cause inflammation. Both neurological and inflammatory disorders and diseases can cause profound behavioral problems, ranging from depression and anxiety to psychosis. This has been long understood and accepted about syphilis and AIDS-when the brain and nervous system degrade, behavior changes-and yet it is rejected by many doctors when it comes to other infections and autoimmune disorders *despite being a common manifestation of these illnesses.* Because of this, I always encourage people who have serious neurological complaints to visit a psychiatrist (MD; not a psychologist) to deal with mental health issues and also to explain the full health profile. Psychiatrists with MDs also can order tests and can help to determine underlying health issues, and a particular benefit with them is that patients spend MUCH more time speaking to them (50 minutes per visit on average, compared with 5-8 minutes on average with any other kind of doctor) and over a few sessions the shrink can get a pretty rounded idea of the patient’s mental and physical health status. So all I am saying is that many of us have a natural inclination to be frustrated when doctors attribute anything unknown to anxiety when we know our bodies are malfunctioning-and I do indeed think that “it’s all in your head” is a wrong and unfair and easy scapegoat many doctors use-but it’s also useful to acknowledge a mind-body (or more precisely a brain/wiring/tissue-physical health) connection and consider that “reverse engineered” diagnoses are possible, as well, with mental health professionals who can help to rule out an organic mental disorder and determine that a mental disorder may have a physical cause that can be properly diagnosed and treated. This occurred too with Ally Hilfiger and Kris Kristofferson, who were diagnosed with Lyme disease and successfully treated after being involuntarily committed to a mental institution by her father (Hilfiger) and being incorrectly diagnosed with Alzheimer’s dementia (Kristofferson). I am still experiencing some health issues and need to see a specialist, and just don’t have the free time or the mental energy at this time to begin that process again, and so I do get how exhausting it is. I’ll need to get it together and begin that process again, however, because we just can’t give up. Keep looking for a good doctor who has the time and commitment to your health to look under stones that other doctors can’t see are there. But one note based on something I see a lot: be careful (this is just my personal perspective) not to fall into a trap many people seem to fall into of getting a diagnosis and feeling finally vindicated that yes, I knew something was wrong with me, and then endlessly pursuing more and more diagnoses and wearing all the illness labels as a proud new identity. I understand how that sometimes happens but I feel like there’s a recent “proud to be sick” movement of people online who sometimes have a half dozen or more exotic diagnoses and seem to be more concerned with raging about those years of being told they weren’t ill and trading stories about terrible health problems and not being believed. I don’t know what to think of this phenomenon, honestly, but the one thing I do know for myself anyway is that all I’ve ever wanted is to have my health restored to the extent that I can function and live my life again. I’m not seeking a doctor to look at as a savior and saint or to get revenge on and punish any party that may have dismissed me in the past. Again, I do understand why some people end up in those positions, but I feel like they are missing out on life in some ways. I’ve gone off on quite a tangent, but I do hope that you’re able to find doctors who can help to explain and treat your health problems so that you can get back to living a productive and happy life!

@@DavidMichaelCommer Hi David, Thank you so much for that sincere response and advice! I totally agree with everything you said. I do find myself going down these manic rabbit holes, between thinking, is there something to this, is it all in my head...? Regardless, I know I "feel" like crap, so what came first, the chicken or the egg? I would much like to have that validation, not to wear as a badge. However, I would like to have it as a means to an end. An end to negative affirmations, thoughts, and self judgment. Thoughts manifested by a feeling of underachievement. Achievements not achieved by virtue of feeling so crappy, not lazy. I would like to think an individual with such ambition and self-discipline, would not truly be depressed, or, at least not at the core of the matter; if anything as a result of the matter. No Doctor I've dealt with has used a line of questioning as simple as that deductive reasoning to aid their own observations. I could go on all night, but I won't. Thank you again! I'll reach out should anything noteworthy happens from here. It is quite the exhausting process, as you mentioned. As much as you want to feel better, it's much easier not having to explain/defend yourself to a doctor, or to insulate to him how he should do his job because his ego is bigger than your problems. Sighhhh...I don't blame you for not jumping back in.

Thank you, Jessiroonita. I seem to now be entering into “book two” of health concerns that are taking some detective work but which have problems observable by labs. I thought I had made it through to the other side and was going to be well for years to come, but...well, I had a two-year reprieve and I am grateful for that. Good luck with the neurologist. Mine didn’t ultimately help me much at the time I first saw them-didn’t help me in terms of being able to diagnose or treat anything, but they were helpful in ruling out some problems. Depending on what’s causing your problems, you may need to be persistent with seeking out medical doctors. Don’t be dissuaded. Advocate respectfully for yourself-stay calm and reasonable even when frustrated so that they don’t write you off as emotionally unstable, but do make it clear that you are seeking and need medical help. Eventually you will find someone who will take you seriously and hopefully will have some answers.

@jessiroonita hi, I hope you are doing well. I have the same symptoms as you. Doctors don't know what's happening. How did your tests go, if I may ask?

I wonder if there is anyone out there who can advice me. I cant bear this much longer

Anyone...

I am so sorry to read this. I would suggest trying to find a tickborne diseases specialist if ticks are prevalent where you live. Even if you don’t have a tick infection, these doctors tend to investigate far more intensively than many others because they are familiar with patients who have gone through a medical mill with no answers and they are more willing to do some detective work. I wish I could offer more help. I hope you are doing better now.

Thanks for the response, Stacy. I recorded this video about seven years ago and life and health are *much* better, at least for now. It's been quite the ordeal with lots of ups and downs, but I've gotten several diagnoses and related treatments and I'm feeling a lot better. In case it's helpful to you or anyone else: 1. In 2015, I was diagnosed with late disseminated neurological Lyme disease and also Bartonella henselae infections. I was in really, really bad shape then. Treatment took a long time and involved several antimicrobial medications and also a lot of supplements for various reasons. I began to write about tickborne diseases, primarily via a Huffington Post blog, and through this, I met a lot of people who deal with and who treat these illnesses. 2016: A foundation sponsored me to attend a tickborne diseases medical conference, and there I learned about mastocytosis and mast cell activation syndrome (MCAS), which sounded so much like a lot of my symptoms. I asked my doctor to test my tryptase level (an indicator of mast cell activation disorders), she did, and I ultimately was diagnosed with MCAS. I was treated with several antihistamines, and my health continued to improve. By 2017, I had stopped taking antimicrobials and I slowly weaned myself off of most supplements I had been taking. I kept taking lion's mane mushroom supplements because I couldn't think clearly without them and could think clearly with them. I continued taking the antihistamines. I remained 'allergic' to heat and exercise, having anaphylactic symptoms and sometimes convulsions when exposed to either of them. (This is a symptom of MCAS.) I tried repeatedly to simply use an elliptical machine, but two days in a row, my arms turned scarlet and the left one swelled up like a water balloon after about 20 minutes of cardiovascular exercise and so I had to abandon my hopes of being physically active. In 2020, I found an allergist-immunologist who is familiar with mast cell activation disorders. He changed my medications and since 2020, I have been taking four antihistamines and one leukotriene inhibitor, along with an inhaler prior to exercise, and these changes improved my wellness even more; however, I've remained unable to engage in vigorous exercise. Four months ago, I began treatment with an injectable biologic medication called Xolair, and last month I suddenly noticed a major difference. Most of my allergic symptoms have improved significantly or have gone away entirely, and I discovered two weeks ago that I am able to exercise vigorously again...so I have kind of overdone it and I'm sore, but it's "good pain," the effect of working out, and not of my body backfiring when I exert myself. So right now, I am in a really, really good place, but I've been in very good places before and have had major setbacks, and so I am cautiously optimistic.

So glad u are doing better. Keep it up. When we as patients tell our story, our emotions, feelings, pain, experiences it really gives us a will to try different things and help medical society figure things out to help us. Keep telling your story!

You’re definitely not the only one. That’s why I put this out there. I knew from message boards I came across online that there are a lot of people who have serious neurological, inflammatory, cognitive and other difficult-to-classify health problems, and who are tested by doctors and then dismissed with an implication that because the results of existing tests can’t conclusively diagnose something, nothing is wrong. And that’s wrong. If it were true that until a disease or disorder is understood and diagnostics are developed, that disease or disorder can’t be real is a bafflingly foolish notion, and it’s shocking that people who study science would ever buy into such a theory.

Yeah, it's crazy. I'm sorry you have been through something similar. I made this video in 2015. The past year (2020-2021) has been a similar year, diagnosis-wise. I've been to a cardiologist, a breast specialist, an orthopedist, a neurologist, an ENT specialist, a gastroenterologist, an allergist-immunologist and, today, an endocrinologist. The days of nothing showing up in tests are long behind me now. My labs are positive for mast cell activation disorder, which I learned back around 2017 and was just confirmed by the allergist-immunologist. I take four antihistamines for that and have to carry an inhaler and an epi pen everywhere I go now. I also discovered over the past couple of months that I have pharyngeal damage from many years of "silent reflux," and I have to schedule an endoscopy to make sure I don't have throat cancer from it. (Really.) Trying to schedule the procedure has been a headache. Today I found out I have an autoimmune disease called Hashimoto's. This just showed up on tests and apparently I don't need medication yet but need to have blood tests every six months until I do need medication. And I found out I have cervical spondylosis--arthritis and nerve compression, basically--in two sections of my spine, as well as a vertebra that has somehow slid backward a bit, and I just scheduled physical therapy to try to help that. So far, no explanation at all for my my left breast has swelled up to twice its size over the past year. It's possible that one of the antihistamines I take for the mast cell activation disorder may have caused it to happen, but I discontinued that over the past year and it should have gone away by now if that was the cause. My tests that have been off include tryptase, ANA (autoimmune disease indicators, which have been negative until this year), anti-thyroid antibodies, my liver enzymes are slowly and steadily rising, just slightly higher than the normal range for the past couple of years, and high cholesterol, which is just hereditary. So I have gone from years with no explanation and mostly normal lab tests to lots of unrelated diagnoses and unrelated explanations and seemingly unrelated abnormal lab tests. It seems like Lyme disease might have been the catalyst for almost everything that has gone wrong.

barbh1 There's more research all the time showing that many different mental illnesses, which historically have usually been assumed to have only cognitive-behavioral causes (with one exception being syphilis, a disease closely related to Lyme and known for hundreds of year to cause "madness"), are actually caused by infectious, autoimmune and other diseases. So mental disorder symptoms actually can suggest what illnesses to test for, or could suggest this once the relationships are better understood. A few examples: www.npr.org/sections/health-shots/2015/10/25/451169292/could-depression-be-caused-by-an-infection www.nimh.nih.gov/about/directors/thomas-insel/blog/2010/microbes-and-mental-illness.shtml www.google.com/amp/www.nextavenue.org/kris-kristoffersons-dementia-now-believed-caused-lyme-disease/amp/ www.ilads.org/lyme/lyme-brochure-psych-2014.pdf www.google.com/amp/s/www.psychologytoday.com/blog/why-can-t-i-get-better/201402/antibiotics-found-effective-in-schizophrenia%3Famp www.google.com/amp/www.independent.co.uk/news/science/scientists-shocked-to-find-antibiotics-alleviate-symptoms-of-schizophrenia-7469121.html%3Famp

This is a really awesome video. Thanks for sharing your life! I learned something new from you that has been missed....those bartonella stretch mark rashes that appear like overnight. I had no idea! I am bringing this up to my doctor at my next appointment in 2 days! I always thought they were weird!

Summer Takacs-Michaelson, CH Thank you. I hope it was helpful, if only to accelerate through some diagnostic steps and consider different possibilities. The blood tests that have been among the most important for me (cd4 blood complement and tryptase) are not commonly ordered and although my levels were “off the charts,” most doctors never would have thought to look there and only would have seen normal results of more common blood tests.

Thank you.

Thanks for leaving a comment, Tisha. I hope it was helpful. I know the video is very long...everyone's cases are different, but just in case this was buried...the two most important tests for me so far, which most doctors never would think to order, were blood tests for c4a immune system complement and trypstase. If the c4a is elevated, then your body is in a state of high inflammation potentially due to Lyme disease and/or black mold exposure (there can be other causes, as well, but if you have MS-like symptoms, then you might look further into Lyme and environmental mold toxins, particularly with a high C4a). If the tryptase is elevated and you have any symptoms of mastocytosis or mast cell activation disorder, then definitely look into those. For most people with a mast cell disorder, many symptoms can be controlled with simple over-the-counter H1- and H2-blocking antihistamines...but depending on severity, MCAS and mastocytosis need additional specialized medical care, as well. Sincere wishes for good luck with your health!

DavidMichaelCommer Thank you so much for the reply and information. I’m still trying to figure this out and the doctors seem to be going around in circles. I will speak to my neurologist and rheumatologist about the tests you mentioned.

Thank you. I hope someone is able to figure it out and help you. C4a complement and tryptase blood tests are uncommonly ordered by doctors and both were instrumental in diagnosing what was wrong with me.

@@DavidMichaelCommer wow thats amazing! I thought your video was very helpful.

They need to

💚 I hope you are well.

Thank you, Monica. I wasn't really confident in putting so many personal details out here, but I was hoping it would be of some use to someone and not just an exercise in futility or vanity.

Thanks. I hope it helps somehow. That’s the only reason I put these videos out.

@@DavidMichaelCommer IT does help!! I'm at that "my God, am I just a mess of a head case or what" stage!! BUT the next morning, when I open my eyes, the first thing I think of after realizing that all of these weird ass symptoms are still there is, I'm not crazy and no....this is real!! Ugh!! Once again thank you for sharing!! It's a comfort to know that WE aren't alone!✌

Aw, thank you. That’s very kind.

Yes it's very thorough and the information is invaluable.

He is amazing. How can we get the video into a search that will help more people?

DavidMichaelCommer hi it’s true! I feel that way too, but we are beautiful amazing people inside n out I also have MD I’ve struggled since I was a young girl, I can relate to u n so many others here, I hope you don’t mind I recently started a channel as well about my story n I’ve invited a few of your viewers, hope your ok with that, I’m in so much pain writing this, thanks again for the time n energy it took to make this video, I’m still getting usto the camara by no means do I want to b a RU-vid sensation lol I just want to help others too not only showing the rough times but the good too😀 hope your good n hope to hear back from you💪👍

MaryLynn 👋 I also have muscular dystrophy I have a channel too n would love for you all to come check me out n let me share my story with you, hope it helps someone feel a little better because yes it’s not easy but with the right support n positive attitude you will get through it, honestly I still have days n night I just cry but I try so hard to tell my mind to keep going🙏🏼 I’m at Yanet Cortez I’m 44 diagnosed at 9 any questions plz. 😘

Marie Vilier Thanks for the kind words, Marie. Good luck with your LP. I would be interested to learn the results.

Thank you! I am carefully listening to your video. It means so much to me. I will definitely keep you updated. I cannot wait to have the LP to know what's wrong with me.

Marie Vilier www.columbia-lyme.org/patients/ld_spinal_fluid.html

Thank you. I am pretty sorry about it, too. I was much better for several years, but this past year has not been good AT ALL. I don't feel as terribly as I did 5-10 years ago in that I don't have as much or the same type of terrible pain, but my body seems to be physically swelling up and falling apart now and it's becoming a living nightmare. Combined with COVID-19 and the political stress of the past several years, I just don't know what the future may bring. My doctor has been absolutely wonderful for me and I think her treatment finally cured my Lyme disease (because the nerve and joint pains have abated), but the newer allergic, joint and glandular problems are taking the life out of me.

Chris P Hafner i can identify too, seems we have all been through similar stuff.

Things have gone downhill recently, unfortunately. I had been doing remarkably well for a couple of years. Unfortunately, a couple of months ago things went south bigtime and I am dealing with some serious new problems, including an aortic aneurysm, and I’ve been getting a lot of tests, including two CT scans so far. Tomorrow I have to get a mammogram (!!!) and ultrasound to rule out inflammatory breast cancer and then in a couple of weeks an ultrasound of my abdomen and sternum to get a better look at my aortic root aneurysm and to make sure I don’t have an abdominal aortic aneurysm. A lot of other people who have mast cell activation syndrome have been telling me lately they suspect I have Ehlers-Danlos syndrome, a connective tissue disease that often co-occurs with MCAS. So if I don’t have cancer or something else life-threatening I guess I will likely be going down that road soon. Life has been hard. I hope you are well.

@@DavidMichaelCommer wow, I'm a very anxious person with anything& everything. And you just telling me all that made me feel so scared for you.... I cannot believe how things go like that when they'll be okay from what you think feel & know then all of a sudden it's a plethora of more things, you know? I am so so sorry for the news you have been getting about your health & I pray that you do have the time to figure it out I have a feeling you've got some, if not several people watching over you 👼. I can't imagine how I'd handle news like that but I can tell you are a sweet and strong person! And I pray all goes well at your appt tomorrow. Nevermind about me and any of my weird things 😊 I would love it if you could update me on how it went though! Please!! Thank you for replying in such detail. It means so much. I'm not that great of a writer these days, not sure where my brain has gone lol or if it's just extreme stress? Anyhow I am keeping you in my prayers however I feel like you will do well whatever comes of this. Thank you for sharing so much 🙏 keep your head up we love you!!! ❤🌛🌹✨

Thank you. Good luck tomorrow.

Thank you! Appreciate it. I’m 55 mins through the video. 👌🏻

Ask to be tested for the Lyme and MS protocol in the CSF with a lumbar puncture. It's going to get you so many answers to all of the questions. Don't do the wait and see.

Please don't give up. You know your body and don't take no for an answer . Keep a detailed journal of dates and doctor name and number along with the address as doctors more. Get copies of the medical records Everytime. I have advanced and active multiple sclerosis that went misdiagnosed for over 10 years. I can't work. I'm broke and have been in the hospital 8 times since April 2019.

Don't give up. Please. I beg of you. My life is over. Don't let yours be.

MaryLynn this just made me cry😢...I have given up and reading your comment just put that fire under my ass again...I am so sorry for what you have experienced...and even though I don’t know you, you took the time to push me, that means more than you can even imagine 💖💖you’re right, I do know my own body....I know that at 33 I shouldn’t be this helpless 😢😢.....I am gonna keep track of everything and I’m gonna speak up...I have a 4 and a half year old son and I owe it to him too....THANK YOU SO MUCH!!!! Honestly I needed that💖💖💖💖💖💖💖💖

Steve Edelen Good luck, Steve. Please do remember that 1) if you're absolutely sick and doctors tell you you're not, chances are strong that they just can't figure out what's wrong, and 2) Lyme and other infectious diseases and autoimmune diseases that affect the central nervous system can cause neuro-psychiatric effects that mimic mental illnesses. This is such a long-known effect of syphilis, for example, that the disease's reputation is that it causes madness when it's not treated; it's really bizarre to me that in cases of patients who have Lyme (which is closely related to syphilis), any symptoms of any mental disorder are blamed by doctors for all the physical health problems (psychogenic) instead of considered possible symptoms of a neurological illness. If an anxious, manic syphilis patient goes to a hospital, the hospital doesn't notice that patient's nervousness and send them to a counselor without treating the disease that causes it. But when anxious and depressed patients go to a doctor and may have Lyme, MS, chronic fatigue/ME or another "new" disease, they are very often dismissed as psychiatric patients without any consideration that a health problem may be causing the psychiatric symptoms. Part of my outreach is to try to spread the word among mental health practitioners that patients with coinciding physical health problems referred to them by physicians need to be screened--even at the prescription of a psychiatrist instead of a GP or another specialist--for diseases. My psychiatrist told me a couple of months ago that a patient had the same story as mine--went through a dozen doctors over many years for health problems and ultimately was sent to her as a mental case--and because her symptoms were so distinct, my psychiatrist ordered Lyme blood tests and, yes, she has Lyme disease. Ally Hilfiger, who is wealthy and connected and can access prestige medical care, was told throughout her youth that she wasn't ill. She had profound psychiatric problems to the extent that her father (Tommy Hilfiger) committed her involuntarily to a mental institution. There, a psychiatrist recognized Lyme symptoms and she was ultimately diagnosed with Lyme disease and treated with antibiotics for 10 years.

Well thank you for the Feedback. After lots of bloodwork and going to ear nose and throat, and Dermatologist, and then back to my follow up I feel so sick of running in a circle and the bills showed up. I'm still convinced somethings not right but decided that eventually if there is something it will eventually show itself...... But hopefully never. I am battling depression over the whole thing but just keep going. The thing that really messes me up is that I have to be referred by the primary care doc to see any specialists and when I mentioned seeing a neurologist I was just told theres no reason for it and that he believed I was suffering from some kind of guilt complex and again this doctor also recommended therapy.

Steve Edelen I'm sorry you're going through such a rough time. Did your doctor actually say "some kind of guilt complex"? What are your symptoms?

Really bad arthritis in my left ankle and knee, Crunchy spine/vertebrae, scabs/sores in my nostrils even after using neosporan 2 times a day for a week at a timelike the doctor told me to do, rash on for head and chest that matches, a funky taste/dryness in the mouth, sinus, and ears, red eyes with a slight irritation, twitching/spasms in eye lid and rear thigh muscles that aren't constant but frequent enough to see an recurring pattern. Orgasms that don't feel good... a general lack of sensation....ahum...down there............ummmmm..... lack of energy, lots of worrying and anxiety. I think its a nerve related Auto immune Disease like MS. Feeling frustrated because I have to try to act like its all in my head. I think I'm nuts and I'm having a lot of suicidal thoughts lately but hey what Can I do. I think it will reveal itself soon or later. Got a 3 month follow up at the end of this month. Maybe the Doc will be more concerned this time.....EVeryone tries to say "Sounds like your just looking for an excuse" or "You're just getting Old Man" or my personal favorite "Stop being a pussy......Aches and Pains are normal...everyone has them.....U think your special or something?".... Thanks for caring.

Im praying for you because God said He wanted me to. Apparently he believes you. Much love to you.

Gareth Bragdon Hi, Gareth. Thanks very much. I hope your puzzle is solved.

I just saw this comment from four years ago. I hope you are doing well today.

Cindy Ashley request an MRI of your brain and you should know the answers. I’ve got multiple lesions in my brain and one in my neck (all of which my neurologist tried to convince me wasn’t MS but couldn’t give me a mimic condition nor did he even believe he’d find lesions). If you’re not happy with your body or the docs response you need to push for further testing. I wouldn’t be a stones throw away from a diagnosis if I wasn’t so head strong and knew my body better than the doctors.

RoamingD Oh, wow, thank you for letting me know. I'm happy you found out what's going on. Please keep me updated on your treatment and progress.

Thanks for your reply. I am reading conflicting reports about whether the symptoms of the disease are reversible. I know I've had it since at least this summer, and I'm hoping that I can improve/eradicate the symptoms and lead a normal life.

I hope you can, too. Unfortunately, the reports about treatment efficacy conflict because the outcomes of treatment conflicts for a whole bunch of reasons, some of which can be explained and some of which can't. Lyme is incredibly complicated and not well understood. If a person contracts only Borrelia burgdorferi from the tick and the infection is caught early--for example, if an EM rash appears and treatment is given immediately and for a long enough duration--then supposedly most cases resolve fully and are cured. A lot of people are diagnosed with and treated for Lyme early on and recover fully. They get a flulike illness, take antibiotics, and they're fine. A lot of people don't catch Lyme early, and when progresses untreated, there is no reason to believe that its effect on the body is very different than the effects of untreated syphilis. The diseases are similar and progress similarly. So in my case, for example, I was diagnosed originally in 1997 and only given 200 milligrams of doxycycline for 10 days. This is insufficient in some cases to fully cure Borrelia burgdorferi because of its life cycle. I was 19 then. By my early 20s, I had some mild neurological problems. By 25, I had some serious cognitive and other problems that I chose to ignore because doctors dismissed them as not being significant. By my early 30s, I presented much like an early onset MS patient. So I suspect that the infection wasn't fully treated and was thus given a decade to turn into a progressive infection that affected many parts of my body, including my central nervous system. Further complicating matters, I was only diagnosed with and treated for Lyme, which presumes only a B. burgdorferi infection, when I was 19. By the time I was re-diagnosed at 36, I was also diagnosed with bartonellosis and babesiosis. These Lyme co-infections are not rare among Lyme patients, and the combined effect of multiple infections is suspected by many to complicate treatment for various reasons. Add to that the fact that I just discovered I have a mast cell activation disorder--whose symptoms I first noticed around age 30--that was likely triggered by the progressive Lyme infection. MCAD is suspected by many to be triggered by Lyme--but once it is triggered, even if Lyme (the infectious disease) is cured fully, the MCAD cannot be cured and can't be treated with antibiotics. It's an autoimmune allergic disorder, and it can only be treated with an arsenal of antihistamines. I may have other as-yet undetected systemic problems that were triggered by Lyme. I really have no idea. So the good news is that about five months after I was on combined antibiotics to treat Lyme (actually to focus on Bartonella, and then later on Babesia), my health suddenly improved markedly. The nerve and joint pain in particular is SO mild by comparison to the hell I experienced for at least five years. Most days were torture. For the past two years, most days have been...annoying. So that is significant progress. On the other hand, I still have extreme fatigue almost all the time. My lifestyle is nothing like it was before all this happened. I'm also, as a result of MCAD, actually allergic to heat and exercise. (No, really, it's a thing and it's really, really upsetting.) So even when I have more energy than usual and want to do something active, if I overdo it even just a little and overheat or--God forbid--sweat, then all hell breaks loose with my body. So I'm still investigating and still trying to share information as I learn it with other people because I know countless other people are going through the same issues, or similar ones, anyway. I've chosen to see this nowadays as a kind of physiological evolution rather than a catastrophe. That helps, too.

Thanks for your reply. I have an update, which unfortunately, is upsetting. I am waiting for an appointment with an infectious disease doctor this upcoming Friday. In the meantime, I saw a rheumatologist for an appointment I had scheduled due to my muscle and joint pain. The doctor immediately said I have fibromyalgia after poking me in a few places and asking me if it hurts. She then said I don't have Lyme disease because my Western Blot shows that I am positive for two bands of the IgM (bands 39 and 41) and negative for IgG. So, since my symptoms have been ongoing for longer than 4 weeks, she dismissed the notion of Lyme disease. It was a very discouraging appointment, and I reject the diagnosis of "fibromyalgia." One does not go from being a perfectly active 25 year old a little over one year ago, to a debilitated 26 year old because of "overactive nerves." In 2015 I was applying for PhD programs, finishing an MA thesis, running 5ks, lifting weights 4 times a week, traveling...Now I get hot flashes when it's hotter than 65 degrees outside, my ass goes numb when I sit, and I get sick to my stomach with nausea and dizziness twice a day. I will update you on what the infectious disease doctor has to say, but I am searching for a Lyme literate doctor. Could you offer any tips on how to find one? The rheumatologist seemed to be reading directly from the CDC guidelines, and I am afraid this infectious disease doc will do the same thing, despite my symptoms and their presentation. I have read that band 39 is highly suggestive of Lyme, and my other symptoms match as well. I am also scheduled for an MRI on brain soon, to see if this is possibly MS. However, it does not seem to present like MS, since I have muscle tenderness and joint pain, as well as stomach problems. This is not a battle I wanted to take on, but I will fight for treatment if I have to. Update: My test results were just updated to indicate that I am positive for 3 IgG bands (93, 58, 41). The literature I have read has suggested a high probability of Lyme disease with bands 39, 58, and 93! I really hope this doc next week can cut through the bullshit and appreciate this evidence, despite the clinic lack of two more IgG bands...

RoamingD Hi there. I am sorry for your ongoing difficulties. Your symptoms, if nothing else, are familiar. Regarding the Bb bands, I am certainly no expert and can't really comment other than to say you may want to read this article if you haven't already; it breaks down the sensitivity of each band: www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/ You may also want to have your c3a complement tested. It would indicate inflammation that, to my knowledge, has been associated somewhat specifically with Lyme and with black mold poisoning. I have never read of any association between the c4a complement and fibromyalgia. I don't know whether it is ever used to differentiate those diagnoses, but the test may help to narrow down what could be happening. For a Lyme specialist referral, the best option probably is to go through ILADS. The organization has a doctor referral request form, but I have heard they can be slow to reply because of limited staff time. You could also try message boards to find out if you can find a doctor in your area.

Hi, Tee Jay...I am just seeing this comment. Did you end up finding a doctor? How are you faring a year later?

My high CRP... now dx with MS ppms.

Thanks, E. I am *a lot* better today than I was when I made this video four years ago, and I appreciate your kind thoughts. This video for some reason has gotten a lot more viewership than I ever would have expected-but I didn’t put it up to be a popular RU-vidr and attract a lot of traffic; it’s just out there in the hope it might help other people navigate their own health problems. As I think I said in the video (I made it a long time ago!), I recorded this because when doctors were considering MS as a potential diagnosis for me, I ran into videos from a woman with multiple sclerosis here and those videos really helped me to cope. So I wanted to put something out there that others might find to help them understand that their situations are not unique if they end up in a diagnostic black hole with severe health problems and feel lost.

I have sent it to several people. I think the duration is perfect

The video has almost 30k views. Please send it to anyone else who might need to see it and advise them to watch the entire video. I have sent it to people who have reached out to me and others who I think need to watch it. This will bring it to the top of search results. Thanks for reading my comment and I hope you are doing ok.

@@DavidMichaelCommer it needs to have more traffic because it's so helpful and full of info that needs to be seen. I'm wondering if you can republish it to 2019 just so more people can find it.

So sorry to hear you were invalidated like that.Your story was difficult to read but I can relate to you. When you get a diagnosis you realise that you are not crazy like some of these arrogant,invalidating Drs make out.I hope you are doing well.Take care

Mister Ben Thanks, Ben. Everyone who lives with this has to be resilient, and many of us have to do the best we can to inform ourselves. A lot of doctors resent patients who research a lot (sometimes for good reasons when we misinterpret info without a formal medical education that helps us understand physiology, biochemistry, etc.), but it is the only and therefore best option for us.

Hi, Donna. Yes, I have *certainly* questioned whether one or many conditions may be affecting my health (hence the title I gave this video). As it turns out, many conditions have affected me; I know with certainty that I contracted Lyme disease and Bartonella infections, and I also have mast cell activation syndrome, which most likely resulted from the tickborne infections and which has persisted since I was treated with antimicrobials. MCAS is regarded as an autoimmune disease, and I expect that it will self-perpetuate. Since I was treated with antibiotics, many of my worst neurological symptoms have improved very significantly. But I still have other symptoms most likely due to MCAS and hopefully not due to persisting infections, and they're often just a pain (literally and figuratively), and sometimes more than just that. I am now experiencing pain in my left arm, shoulder and neck, and my whole left arm is swollen (edema), which makes me wonder whether my heart or other organs may be compromised--so that is a whole new worry. MCAS can attack the heart, liver and kidneys and cause malfunctions, including heart failure and cirrhosis. I am allergic to heat and exercise, and of course telling people this makes any normal person think that I am totally off my rocker. My teeth continue to be a major problem, likely again due to the mast cell disorder. There is strong evidence showing that Lyme disease infection can catalyze mast cell disorders, and many people who have or who have had Lyme also have mast cell disorders. So yes--many different factors are affecting my health, probably all stemming back to the infections from tick bites. I am not a doctor and I don't mean this to be received as anything but passing on of hearsay, but I have met many people who were initially diagnosed with fibromyalgia (and multiple sclerosis) and then later found to have tickborne infections, with symptoms resolving with treatment. If one were cynical, one might suggest that pharmaceutical companies 'love' fibromyalgia as a diagnosis because its only treatment is patients buying painkillers and other drugs for the rest of their lifetimes rather than seeking out the cause and hopefully treating/trying to cure it. I'm not as well versed on fibromyalgia as I could be; however, one thing I do know about it is that some doctors seem to apply the name to any idiopathic illness (something without a known cause) that causes nerve pain. It's not all that uncommon for people who had at one time been diagnosed with fibromyalgia to be diagnosed with something different and successfully treated for it later on. Good luck to you, and thank you for the comment. I'm sorry that you have to live with health problems like these.

Hi. I’m sorry; I just saw this. Yes, c4a complement is a simple blood test. It is often ordered with c3a complement. People who have full-blown AIDS and some other serious conditions including cancers often have an elevated c3a and c4a result. However, people with active Lyme disease and people exposed to mold often have only an elevated c4a with a normal c3a result.

Hi...thanks, I am glad it is useful to someone. I am doing better than I was two to six years ago. About five months after going on antibiotics two years ago, most of my symptoms improved very suddenly and dramatically. They still wax and wane, and I have had a few big "flare ups," but all of them have coincided with 1) stopping antibiotics for more than two weeks; 2) discontinuing herbal supplements; or 3) exercising. I have learned a hard lesson the hard way: My body doesn't tolerate exercise anymore. I have a lot of symptoms still, which range from almost constant fatigue and cognitive impairment (brain fog and severe memory problems) and pain in my neck/left arm to (occasional) nerve pain and numbness and then (rare and fleeting so far) very worrisome symptoms, including a blurry spot that obscured my vision in my right eye for two days last month, heart attack-like symptoms that make me feel like I am going to black out, and other random problems like double vision. But aside from the fatigue and neck pain, most of this is short-term and comes and goes, even though the worst symptoms can be very scary. One of my teeth "died" with no explanation--there was no cavity or other damage and no apparent damage to the roots--and a biological dentist I went to said that it most likely was a result of Lyme disease, especially because it was next to a tooth that had had a root canal and subsequently developed an abscess underneath it. I attended a medical conference last month and learned about mast cell activation disorders, and I am 98 percent certain that I have MCAS, although I have not yet had time to see a doctor about it. I may record a video about MCAS because I had never heard of it before and it explains a whole lot of my strange symptoms that are atypical of Lyme disease. As of now, my health fails when I discontinue antibiotics or when I discontinue herbal supports. It's a VERY high-maintenance and very lethargic lifestyle. But it's also MUCH less painful than it was years ago. Between the excruciating nerve and joint pains and the random health issues like cluster headaches and vertigo attacks, life years ago was a living nightmare. Now it's just inconvenient and somewhat limiting. Speaking of the vertigo...I was diagnosed with Meniere's disease the same month I was re-diagnosed with Lyme, in February 2015. The Meniere's diagnosis was based on a specific pattern of hearing loss in my left ear in combination with the vertigo episodes that would come on suddenly and knock me to the floor. The doctor tried treating it with a diuretic for six months, but that didn't improve anything. He said that Meniere's is usually progressive and can lead to total deafness in the affected ear and sometimes can render a person wheelchair bound because it affects the balance so severely. Well, miraculously, not only did my vertigo attacks abruptly end after I began antibiotics, but my hearing has improved significantly in that ear. This is all incredibly complicated and there still are not a lot of answers for most people's mysterious health problems, but the only way to change things is for patients to be their own insistent, loud advocates and to also advocate on behalf of other patients.

Keldor Miro so far MRIs that don’t look good. EMG next week. But not lumber puncture until after this Pandemic is over. So not much. But at least this doctor is trying to help.

Keldor Miro no I have an appointment in 2 weeks with the neurologist. We should know more then.

Keldor Miro Just walked out of Neurologist office with a diagnosis of relapsing multiple sclerosis (MS). Only took 20 years from start of problems.

Keldor Miro numbness tingling in legs. Headaches eye problems weakness and fatigue.

Keldor Miro like when your foot goes to sleep. But it would last for days and weeks

Hey faisal dasti, can I get in contact with you?

@@nagmahassoun5013 sure but I don't know how to exchange our contact at this platform?

Hector Caro I’m so sorry, Hector. Why can’t you walk more than 10 feet? Is it because of pain or because you are too fatigued or another reason? I am doing a lot better now with respect to everything discussed in this video, which is from five years ago-and if there was hope for me, there is for you. Almost all my nerve pain issues resolved with treatment for Lyme and Bartonella infections, but it took time and was not easy. Most of the joint issues also resolved over time. I found out I have mast cell activation syndrome, a chronic allergic disorder that probably was caused by the Lyme infection, and it has been mostly treatable with histamine blockers but challenging. And recently I have had a flare-up of symptoms that are not exactly new but are a little more pronounced than they used to be, and all are typical of potentially serious cardiovascular problems, and so I am trying to work that out. I had a reprieve of several years without major health concerns but that break may be over now. Anyway...it’s life. On with it. Please remember that you need to advocate on your own behalf with doctors. Almost all doctors are trained in such a way as to rely completely on laboratory diagnostic tests and to move you in and out of their offices like an assembly line. It’s not personal. If you see a doctor who seems to be in a rush to get you out, ask if they are. They will probably recalibrate and start listening. If you see a doctor who seems not to listen or not to care, then just be gracious, thank them, and find a different doctor and keep on shopping until you find someone who takes your health seriously. There’s no point in wasting time.

Haha, thanks, the tapestry is of a Van Gogh painting of almond blossoms. I'm sorry you're having weird health issues. :(

@@DavidMichaelCommer it’s gorgeous! Thank you my friend. I finally made a doctor appt for June 10th. I’ve been putting up with this too long. Xx

@@myheartisinjapan3184 Good, and good luck. I hope whatever is going on is easy to diagnose and to treat. If not, don't give up on looking for help.

@@DavidMichaelCommer thanks, David.

WNCBlueRidgeGrannie1 Thank you, Grannie. I made this video and write about Lyme because I had a hard time finding reliable information for years. I came across some incredibly informative videos from someone called Tysabri while doctors were looking into the possibility that I may have had MS, and I remembered her videos when I was finally solving my puzzle and wanted to pass the help along.

Thank you-but at 41, I won’t be pursuing a line of work that requires more than a decade of schooling and apprenticeship. :)

His recall is amazing.

MaryLynn Ha...thanks. That’s funny, because I have THE WORST memory. But I have documented everything I’ve been through pretty carefully and I am naturally very curious about health and medical science, so it’s like a real-life mystery (unfortunately a tragic one happening to my body) that I find compelling in a weird way. Most of all, I feel like the only good that can come from it is sharing my experiences with other people who may go through similar things in case it helps.

Vicky V once you’ve had EBV it’s in your system forever... It shouldn’t be active, but once you’ve had it once they will always be able to see it in ur blood....it’s something like 90% of the population is positive... that said... have you looked into ME/cfs ... most people don’t know of it and most doctors don’t acknowledge it...

Violet Melon Unfortunately, Neil Spector, a renowned oncologist from Duke University who had to have a heart transplant years ago because of Lyme disease (He wrote a book about it called “Gone in a Heartbeat.”) recently died from complications of Epstein-Barr virus. It is far more serious than people tend to think of it as being. I actually had mono and Lyme the same year, in 1997, when I was 19, and that’s definitely the beginning of this lifelong nightmare.

No you cannot have full normal thyroid panel and have hashimotos lmao people who do is because they dont have a full proper thyroid panel done

Exactly!!!

Gumbo72203 are you or have you been on benzodiazepines?

@@this-is-slammin-549 I am and have all the MS symptoms. Why do you ask this

That Girl look into benzodiazepine Tolerance withdrawal. Benzos can severely compromise your central nervous system. Even if they are taken exactly as prescribed. Causing many strange neurological symptoms that mimic different conditions and diseases. It happened to me and it’s not that uncommon.

@@this-is-slammin-549I think you're onto something. I'm highly suspicious that this Klonopin is causing it. I think I've got MS. It's real crazy. I'm still on it but have severe spasms, numbness, cramps...Did you taper off successfully?

Hi, Jennifer. I am very sorry for what you've gone through. I posted this video because I knew that I was one of many, many people who has been a mystery to medicine--or at least to clinicians I had seen--and sharing information can only help, both subjectively and objectively. I am doing A LOT better today. A whole lot, and the improvement has been slow but also steady. First, I was treated for tickborne diseases, including Lyme, Bartonella and Babesia. This required several antimicrobials over about two and a half years, as well as A LOT of supplements. It was expensive, and it was complicated and took a toll on me. I've since read in some medical literature similar treatments under hospital settings described as "antimicrobial chemotherapy," and I think that that's an apt description. Of course, because I was not diagnosed with cancer, my treatment was not considered to be chemotherapy, and unlike a cancer patient, I didn't have the relatively luxury of taking a break from working to recover. I'm fortunate that the people in my personal and professional lives supported me and were patient--but I also was expected to continue to deliver professionally during all that time, and I did. With support from many people. During the treatment for tickborne diseases, I attended a medical conference and heard two lectures on mast cell activation disorders that sounded like me. I am always wary of being a hypocrhondriac because, really, how many things can be wrong with one person? But the similarities were enough that I asked my doctor whether I could have it and my doctor ordered a blood serum tryptase test and it was "off the charts" and in range with mast cell activation syndrome or mastocytosis. Since that time I have been treated with high doses of over-the-counter antihistamines and following the tickborne disease treatment, which helped me recover 70-75%, the MCAS treatment (which is inexpensive and accessible without prescription) has brought me up to a 90-95% improvement. It's a whole new world healthwise. I'm not suggesting that these problems also are your problems, but I am suggesting that there's a hell of a lot medical science doesn't know yet, and even more than everyday doctors and medical specialists don't understand because it's obscure. If the COVID-19 pandemic crisis has proved anything to the public at large, regardless of political partisanship today, that's something we should all be able to understand now.

@@DavidMichaelCommer do u have the skin burning still

roses and thorns Almost never, and the stretch mark like scars, which my doctor has attributed to Bartonella infection, were visibly inflamed (puffed up and pink) before my antibiotic treatment and now they are neither inflamed nor are they itchy/burning.