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Hi everyone. I am HLA-B27 negative with completely normal CRP and ESR labs, and a clean MRI—though ultrasound recently caught active SI joint, sacrotuberous ligament, and knee inflammation.My symptoms started as a teen. My main issue is deep, achy enthesitis: pain in both Achilles, plantar fascia, knees, hips, groin. I have no swelling or dactylitis. Both my mom and brother have identical symptoms. Has anyone else here been diagnosed with axSpA based primarily ultrasound enthesitis despite… read more
@A MySpondylitisTeam Member. Hello Rine, I see your update about seeing a functional medicine dr for testing. That's helpful. Did he/she do a gut mapping test for your microbiome balance? That one is very helpful. It can tell if you have dormant disease such as klebsiella pneumonia (very common for AS), or streptococcus (common for Psoriatic disease), and others. It can also reveal whether or not your body is able to absorb nutrients in food necessary for healing. Of all my tests, that one and mold mycotoxins tests were the most helpful for me. Another common autoimmune catalyst discovery is a Borellia (Lyme) provocation test. I dont know where you are, but in the US most Lyme tests come back with a false negative result because the organism is able to hide in a protective encasement that the antibodies do not detect and therefore do not show up in significant quantities for the test. However, the organism is still there triggering an autoimmune response without the specified antibodies. It's a very tricky nasty beast that many poor souls never find because the conventional medicine protocol does not correctly test for it. It's a very expensive test in the US too and most insurance companies do not pay for it. Those people go their whole lives never knowing why their bodies have all the many awful and growing in number symptoms of disease. I hope you are able to uncover your causes with your practitioner. Don't give up. Yours in better health, P 😌 🙏
@A MySpondylitisTeam Member. Hello Rine, it is normal to not have "screaming labs and films" and still have any type of autoimmune disease, in this case AS. What happens is a gradual process that begins with symptoms that are felt, but not yet intense enough to have conventional medicine labs showing clear evidence. You do not have to have the gene, HLA-B27 and even if you do, that does not necessarily mean you will develop the disease. That gene is not a cause, it's just a predisposition to developing the disease if you are exposed to enough triggers. Part of the problem is the labs that are ordered by conventional medicine doctors. They are broad in nature compared to the more thorough and detailed labs ordered by a functional medicine practitioner. Furthermore, the conventional medicine Dr's only treat symptoms, typically very ineffectively. What is happening is your body reacting to something and trying to get your attention to do something about it. If you dont figure it out, eventually it will get bad enough for labs and films to start showing more definitive disease. The most common culprits are emotional stress (you think you have everything under control in your life, but you're actually running from one mini fire to the next trying to stay on top of a demanding schedule, just an example, not saying it's you); or environmental (mold hiding in carpeting, ductwork, behind bathroom tile is ultra inflammatory); dietary (gluten, lactose, ultra processed foods and refined sugars are definitely inflammatory because they cause leaky gut); and prior illnesses (pneumonia, streptococcus, Lyme, eppstein barr to name a few). A functional medicine practitioner will spend the time with you and order the right tests to help you unravel the culprits that are causing your pain. Then they will work with you to remedy your particular sources of inflammation. You can learn more about this by seeking out Functional Medicine practitioners online for free and watching their free webinars and educational YouTube videos. A few really great ones to start with are Dr Micah Yu. MyAutoimmuneMD.com; Dr David Jockers.com; and GodonMedical.com. Best of luck to you on your journey. The sooner you educate yourself on what causes and remedies chronic inflammation from autoimmune disease the sooner you can get your pain under control and your life back. It's not easy, but is well worth the efforts. I went from unable to walk and talk 5-6 years ago to walking over 5 miles unasdisted and socially engaged again. There is not much in the world more humbling and rewarding to be blessed with a second chance in life as a result of hard work learned. Yours in better health P 😌 🙏
What a thorough picture of your situation — and yes, your experience is more common than you might think. Getting a spondylitis diagnosis with normal bloodwork and MRI is genuinely challenging, but it doesn't mean the condition isn't there.
A few things worth knowing: Being HLA-B27 negative doesn't rule out axSpA. While Show Full Answer
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