You really shouldn't use the ELISA Lyme test as a reference without letting people know that it has less than 40% accuracy. Probably less than 30% in most experts opinions. That's where you lost me.
Chronic Lyme is causing neuropathy, severe fatigue, extremely poor sleep and cramping in feet and hands. My Lyme was undertreated and I believe the bacteria are still wrecking my nervous system.
Yes at stonybrook tick borne disease research center at the end of 2017 on veterans community care finally after 2 years of misdiagnosis spinal was unremarkable but pathologist saw elevated white blood cell in csf I believe I heard you can fix in alcohol and if it’s cloudy it’s infected but clear is good sign I don’t know if I quoted that correctly from dr Allan McDonald pathologist specializes in Lyme disease. They picc lined me after unremarkable mri as well but I had 5mm lesions frontal lobes 5-6 of them showing through 3 prior mris Every six months post bite late 2015. I had advanced lab culture negative but my igenex testing was positive along with anaplasmosis and Bart h. Immune gen testing stony brook ran for miyamoti and relapsing fever negative as well as Lyme negative. But I had full blown bite adult female deer tick and classic huge bullseye and flu then neurological classic case completely misdiagnosed every dr endlessly all would not recognize or threat negative western blots killed me and the dogma.
Test doesn’t work period I have bite and rash negative 5 tests and negative spinal tap and treatment worked but I knew the hole time I had perfect bullseye rash and adult female deer tick she was picture perfect case unbelievable this happend I knew nothing about Lyme but have been misdiagnosed with MS during the process from the most brainwashed drs don’t believe in tick borne disease period and have a test the doesn’t work at all it wouldn’t matter if they did they don’t take into count post bite treatment timeframe for treatment duration which leaves you never getting better if they don’t follow up till completion.
Chronic Lyme is linked to Mast Cell Activation Syndrome (MCAS). Mast cells are also involved in MS, ALS, Parkinson's Disease and many other disorders such as ADHD, Autism, Migraine, neurologic and psychiatric symptoms (NPS). RLS, IBS, Fibromyalgia, POTS, hEDS, Interstitial Cystitis, Endometriosis, TMJ, Multiple Chemical Sensitivity, Allergy and Asthma all of which are overrepresented in ME/CFS. Lyme's association with mast cells was discovered in the 1990s long before MCAS was known.
Why do neurologists use ELISA Tests for the spinal fluid? There are way more better ones with OpsC etc. Using a test with a 90% accuracy would be much better. ELISA Tests are so ineffective.
Very interesting! I have to wonder the reason why lyme disease is less in people with MS. Is it possibly that people with MS just aren’t out in the woods and grasslands as much? I live in an area where Lyme isn’t common, however I hiked the mountains of the NE often so could have had exposure. For this reason, it seems I was constantly being asked, “Are you sure it’s not Lyme?” I’m sure I’m not alone being asked this particular question so often! Thanks!! 🤗❤️
Lyme is common. Its in the LA suburbs. You can look up articles that posted studies of Lyme showing up at CA beaches. LA West Vector Control is just an example to see how just in LA its everywhere.
I am watching this because, I have Lyme disease, and my first MRI was abnormal. They are going to check the spine for lesions and take a closer look. Thank you for the video.
Head and neck were done 3 hrs. ago. Tomorrow is the Spine. Contrast also of course. Then I wait. One disk will be fedx to the Lyme literate Doctor in Pennsylvania and my regular physician will revive it. So three reads. This is going to be interesting. I will keep you posted.
This is simply note true. Even though neurological manifestations of lyme disease can mimic multiple sclerosis, the more common forms of neuroborreliosis are things such as meningitis and bilateral facial nerve palsy.
Why people with no B cells don’t get ms? Key piece may be, I have had Lyme a very long time. It made me immune deficient (that’s what it does- we all have crazy high ebv, low igg, other viruses also present) and then made the immune do bad things- mcas, angioedema, sending pain signals. SO many doctors don’t know the immune system does those things, particularly send pain signals. To stop some of those, I turn off B cells with rituxan - used with ms patients too. I can say I do MUCH better when we obliterate my lyme impacted immune system.
Dear Branon, please replay. I was diagnosed with ms and abaut to take Techfidera in literally few hours (...not gonna happen to be honest).The problem I have is that I have abaut 60% of ms symptoms and... I live in national part going in to woods is my every day. I have memory that when the very first warning happend witch was I could not really run like I want it to it was in same time that i have very clear memory having tick bites every day..and I literraly pulld them out of the skin I also remember at least 2 not actual bulls eyes but preety bad red spots weeks after I rip out the thick. My question to u is...should I go on private company and check for lyme ( I belive it was ELISA the name of the procedure) I understand its suuuuper mimick symptoms and hard to find it. My spinal fluid had no lyme traces. I know im trying to find every way not to agree on ms ...but I reallllly do belive this is lyme disease. Please replay me when u can find some time. Thank u for ur videos.
Sorry. I can't give you personalized medical advice here. My opinion is that lyme disease can in some cases cause symptoms which could mimic multiple sclerosis but would rarely cause "typical" multiple sclerosis brain lesions. It's difficult for me to say which lyme disease western blot lab is superior in sensitivity and specificity.
I’d jump into a Facebook Lyme group. I would say that spinal fluid is the best thing you could test for Lyme- and get an accurate test, but I don’t know if they didn’t find it, what that means- how did they test it and I don’t know what the chances are it may not be “hanging up/ showing up in the spinal fluid. It is your best shot of finding it if it’s there. Their not finding it in a blood test means absolutely nothing. The Elisa test is the 1st part of Lyme testing. If it’s negative they don’t do the western blot- 50/50 on the Elisa test being accurate. The western blot- looks for antibodies and u quit making them afteR youve had Lyme awhile. Bay Area Lyme, a reputable org by everyone’s standards did a study in 2020 that was very reputable, towed the cdc line and they found the cdc Lyme test gave patients 71% false negatives. Many patients with Lyme are told it was MS that was their “only” issue.
You have not had proper blood testing for lyme. The elisa blood test is at best 20% accurate mainly in early cases. And lyme is rarely cultered in spinal fluid. This testing comes from the CDC site which they recommend only for survellience, and not as they state clearly diagnosis. You need a western blot blood test run thru a lyme sensitive lab like IGENEX in CA. Lyme has over 100 strains and most labs ionly test for 1 strain. Some labs now will nnot run a western blot unless you have a positive elisa. They are hiding it. Find an ILADS lyme trained doctor if you want diagnosed properly.
But what about other bacteria like Babesia and others that ticks and spiders carry. Also in those examples were chemo kills the immune system and a patient gets better but now they are saying it is caused by EBV so how do you explain that ?
MS is not EBV infection of the brain. It is an immune mediated disease, and EBV appears to be one of the environmental triggers of immune dysregulation. More explanation here: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-nycIHwdWv-w.html
Why is it that almost EVERY medical condition is "predominantly a female issue"? I call BS on this, and say it is because us men are told "it is nothing" "brush it off and go back to work." It forces us to rarely seek medical help when we truly need it, and are often left to suffer.
Why du you say it is very sensitive? That is not true! Zero negative cases are possible with Elisa and it should be replaced by a highly sensitive test that gets EVERY case. Not just 20-40%. Iam angry because u say it is sensitive but on the other hand when Ms drugs have an efficacy of 20-40% u say it is moderately effective. We need a Lyme test in the spinal fluid that is like Ocrevus or lemtrada in sensitivity vs. efficacy.
Sarcoidosis causes a different neurological disease (neurosarcoidosis) with different radiologic features (dural based lesions, hypothalamic involvement, etc). Pathologically, sarcoidosis lesions show non-caseating granulomas, completely different from what is seen with infections. There is no known association with lyme, covid-19, or mold to my knowledge.
AUG 2022 CDC announces major agency overhaul; what about Lyme? Dr. Rochelle Walensky, the director of the US Centers for Disease Control and Prevention, has announced a major overhaul of the agency she leads. Admitting that the CDC had failed to respond effectively to the coronavirus epidemic, she said it’s time to “pivot.” “For 75 years, CDC and public health have been preparing for COVID-19, and in our big moment, our performance did not reliably meet expectations,” Walensky said in a statement. “My goal is a new, public health action-oriented culture at CDC that emphasizes accountability, collaboration, communication, and timeliness.” Her announcement came after a comprehensive review of the agency’s coronavirus response that she ordered in April. That document has not been publicly released yet, but she spoke about it in a video sent to CDC employees. She stated, “To be frank, we are responsible for some pretty dramatic, pretty public mistakes, from testing to data to communications.” I’d like to point out that for decades, the CDC has made pretty dramatic mistakes about Lyme disease, too. With all this reorganization, the agency should also revamp its approach to Lyme disease, “from testing to data to communications.” A good place to start: correcting faulty information about Lyme disease on the CDC website. But much more is required. An overhaul is overdue. For details about Walensky’s announcement, see this report from CBS News.
