I cant even find the words to let you know how thrilled I am for you! Apparently she had the surgery here and then went to Dr. Bolonesse (sic) in Europe for followup surgeries which failed. There are upright MRIs with flexion, extension, and rotational views, or supine CT scans with flexion, extension, and rotational views or 3Tesla supine MRIs. I am glad for Jen Brea but hope it lasts. Neither could have pointed to their head/neck area as a likely cause of their illness. kryptopyroluria I am happy that Ms. Brea health is vastly improved and perhaps even cured of her malady, but she never did have our thing. My name is Jennifer Brea. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? My symptoms start after I do too much work/exercise that includes my shoulders and neck. Chiaribridgesreported that the ideal tests to diagnose CCI and AAI are an uprightMRIwith flexion and extension (bending ones head forward and backward as far as one can) and a 3D CT with rotational views, respectively. I am with Fibromyalgia and I am reading the book above have not finised yet It looks promissing .!!!! And I do appreciate any new information about anyone recovering or improving a lot and how they got to this point. We are becoming more and more militant with those outside our community who do not accept the validity of ME/CFS. So maybe at the core of ME is pro-active hibernation with the body waiting out a problem it cant resolve all by itself but very actively trying to provide, restore, improve and replace vital affected functions just to allow us to survive long term and hopefully even do so with very few permanent damage. With moderate brain fog, in a way it seems a cruel joke that I am the one who has to research and make sense of these things. Everything felt to me to be systemic. I wonder if a move is in store? I had a urine count of 27.5 so I was severe. Just wanted to say that the Perrin technique, mentioned above, plus other osteopathic techniques, did nothing to me. (Recently Ive come to view my own condition as more of a cascading, self-perpetuating cycle, rather than a linear cascade. Narrower everything? My bedsheets were brown in a week with toxins..still are. Jeff and Jen Brea are leading examples. Hi! Has there been any research using Infra red light therapy , it is low cost, non invasive and the target areas are the Gut Microbiota, no medication is required. Jennifer Brea 2.8K Followers http://jenniferbrea.com More from Medium Mark Schaefer 20 Entertaining Uses of ChatGPT You Never Knew Were Possible Mehek Kapoor in Stories From Heart This woman. I have a normal life, just I am not the same I used to be. In the end, my dream is that all of the suffering caused by this disease and the large effort needed to combat it will increase understanding of this disease as a series of mechanisms, learn how to differentiate between symptoms that drive this disease and symptoms that are the result of fighting this disease and result in a sort of extensive diagnostics and treatment plan that gets to the root of our health issues. My ME is in remission. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. He thought probably various viruses were responsible. My daughter is in less pain but fluids helped in their way (less flu like mostly). 2) Why is there such a prevalence of women in the ME patient population? Found 20 colleagues at Drexel University. extremely elevated cortisol awakening response According to one site, though, these ligaments get reduced blood flows which is another issue in ME/CFS which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS. Didnt she had thyroid cancer and removed her thyroid? I had 3-level spinal stenosis surgery with fusion and decompression 5 weeks ago and am wondering if this might give me an ME improvement/recovery? The winner for one recent onset but severely ill patient was desmopressin something that doesnt work that well for most. Also EDS tissue can have a tendency to stretch and droop out of position. Im still waiting ?. So is the muscle twitching, the air hunger, the restless legs, the brain fog, the short-term memory issues and the flu-like symptoms, For the first time in eight years, shes walking for exercise and, well, for the thrill and joy of walking. youve forgotten them or they are lost to you. Yesterday, I shared the news with our community that all of my symptoms of myalgic encephalomyelitis (ME) are now in remission.This is the outcome of a long journey that began last year with surgery for thyroid cancer; took an unexpected turn for the worse with the sudden onset of a new symptom . The story of remission makes it even more clear to me than ever that we must fight for research to better understand the mechanisms underlying all of our cases. Having your senses reporting different information about speed and position makes it worse. Please, I would sugest you to read the book Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg. Sometimes, hope shows up where you least expect it and we are reminded that all things are possible. -scrub typhus (since treated) Each of these could trigger a different (and less invasive) treatment approach. Claiming those who recover never had the illness in the first place or were misdiagnosed seems a popular response for some. Jennifer Brea is impacting the world for people living with the invisible disabilities, M.E. Still, Im hoping that: a) CCI/AAI is not a common diagnosis; or b) if it is, that non-surgical treatments can be as helpful as surgery. But if it would make it more flexible (or allow better spinal tail deformation) then this spinal tail puling should result in a bigger effect in the above three parameters. It is wonderful to see these kinds of stories, and for so many reasons. If he didnt write it up, how many others didnt either? and many of my autonomic manifestations, including POTS, under control. Ill kick in a donation now to say thank you! Symptoms of autonomic nervous system functioning problems such as tachycardia (rapid heartbeat, heat intolerance, problems standing (orthostatic intolerance), gut motility problems, thirst and chronic fatigue. After reading Jeffs account Mattie thought he didnt have CCI/AAI but got it checked out anyway and found, to his surprise, that he did. Im very happy for Jen and anyone who manages recovery or remission, Im a tiny bit scared of losing her as one of our primary advocates. She has major problems with neck instability, swallowing difficulties, vertigo, nausea, nystagmus, being over whelmed with thoughts, anxiety, fear, She suffered a lot of trauma from the medical system here in New Zealand. About 10 years ago I went to my Medical Internist with horrible neck pain, headaches and difficulty swallowing. This did not help my daughters CFS-ME. Jen Brea, Steps per day Jen Brea before and after surgery (see blue line) (From https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/). I cant sleep (for years). * The brain part of the spinal fluid bag sees each breath a wave of contraction / expansion or more pressure / less pressure. Good luck Vlynx with the protocol and I hope you will continue to share how it goes. It really helps pull together all the threads! The people said it was very lucky. I think the really compelling thing about mechanical explanations relating to the neck and spinenot just CCI, but mechanical Intracranial pressure, cervical spinal stenosis, etc etc. is that it can potentially speak to two of the biggest puzzle pieces in ME: I never fit cfs criteria as my sever fatigue only lasted a few monthsbut i am always fatigued..just not in bed full time like some. A neurosurgeon saw my MRI in Unrest and emailed me to say."yeah, that 'normal' MRI isn't normal." The path that led me to a diagnosis of craniocervical instability began with the observation that I had intracranial hypertension, a condition some clinicians believe is associated with ME/CFS. Jennifer Brea is a filmmaker and activist. Looking forward to hearing the results of his study and of the herbal study. We know Jen Brea and her husbands story on an intimate level through Unrest. I was diagnosed with CFS about a year ago, after several years of struggle. Hope Jeff & Jen & other cases do get documented. But if people are having improvements from cervical spinal stenosis surgery, why would we not count them all together? I hope not. I think the question of just what exactly is ME/CFS is going to come up more and more. I am still amazed each morning when I wake up symptom free, and I marvel at how much and what I am capable of doing with only normal healthy responses. Phoenix Rising Forums A 100 page plus thread exploring craniocervical and other spinal issues in ME/CFS. Indeed, Jen Breas recovery is wonderful news. She doesnt appear to have ME/CFS anymore, though, and in six months, she may be completely healthy. Jennifer Brea Wiki, Biography, Age as Wikipedia. I was told by a Woman last night to look into a condition called Systemic Nickel Allergy Syndrome I was very surprised she said this to me, a Doctor a few years back told me I was Allergic to Nickle he never said anything to me about foods, vitamins, minerals, medicines that contain NickleI was reacting very badly to belt buckles, wrist & neck chains, watches I would break out in severe itchy hives & itch until I would bleed. His partner, Dr. Chedda, now regularly checks for CCI/AAI. After working as a freelance writer covering China and Africa, she enrolled in a doctoral program in political science at Harvard. However, these policies are limited to in-network providers and facilities. Or an enteroviral attack which sparked an immune response which attacked those ligaments? Many of the symptoms I experience seem to point to something the body is trying to resolve. Hey Cort! Quite a few cant tolerate it or it doesnt help. Angela, I agree with Cort, Nicely said! Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. Recovery stories bring up a mix emotions for me, as well. This was a friend of mine and it was horrible for her. The hypothalamus is unable to function properly which results in toxins back-flowing into the brain and spinal chord (both of which dont have a proper lymphatic drainage system) instead of being eliminated efficiently and quickly by the liver. Conversations, once vanquished, about the unfairness of it a tunnel down which no cheese exists show up again. Most of us with MCAS dont have HAT, so your daughters case is unique. Brea co-skabte ogs en virtual reality-film, der havde premiere p Tribeca Film Festival. Brea, Jennifer (May 20, 2019). But it would mean that every single Jennifer, Jeff and the many others help shed light on a single aspect of this complex disease and help pull all of us bit by bit out of this swamp. In your daughters case it would make sense that having HATS the surgery wouldnt cure anything. amzn_assoc_marketplace = "amazon"; The main thing I know is that NO ONE ever had the slightest intention of solving In 2017 I was found to have two antibodies, Jo-1 and Ro52 and diagnosed with Antisynthetase Syndrome (ILD with dermatomyositis) and Sjogrens Syndrome. It has also caused to wonder about my own possible CCI. A word of caution. Do we know of any MEEPS beyond Dr. Rowes three who have recovered or had major improvements in their ME after spinal stenosis surgery with or without fusion? https://www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/#comment-874284, https://rarediseases.info.nih.gov/diseases/13193/hereditary-alpha-tryptasemia-syndrome, https://www.mechanicalbasis.org/interviews.html, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/, via the dysregulation of immune signals traveling from the vagus nerve to the brain, via activation of the many mast cells found in it, via problems with its regulation of the autonomic nervous system. What has helped somewhat is daily valacyclovir. Gentle hugs. he is still going in his support for people with ME/CFS. All of us know that any level of ME/CFS robs us all of so much of what we would want for our lives, this is the one place we dont have to explain that. 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