Thatll kill you within days. Lets go back to Naviauxs research and Ron Davis comments on it. For me, toxin buildup in the central nervous system certainly makes sense. This is why Im curious if Jens MCAS or mast cell activation came on as a result of environmental trigger (mold) or has a genetic origin. It could be argued there has been insufficient research to build on Ramsey and Dowsetts hypothesis of ME being atypical polymyelitis. Ive had neck issues for many years, but cant convince doctors to investigate. I have insurance, but it is in-network only: the surgeons who perform this operation are not in-network for my insurance. Anothers surgery is on tap and one was recently done. Jennifers case may be a good example of this hypothetical disease mechanism. My therapist and I combined our thoughts and came to the conclusion that this is what most likely happens: And she had suffered from PEM which most of us CFS patients consider a hallmark symptom. If he didnt write it up, how many others didnt either? Not sure how available nutritional supplements are in NZ, but Huperzine A is well known in Chinese and Indian medicine. For the vast majority of their time ill neither Jeff or Jen experienced the kind of head or neck symptoms one would have thought would have accompanied CCI/AAI. That kinda bites. I do ice my head and neck almost everyday. I cannot emphasize this enough, especially for chiari! She started filming herself and the community that she discovered online, collecting the first footage of what . Terri Wilder, M.S.W. Im just reading his book and had a eureka moment. The next week, the chief led a war party against another tribe. Jennifer Brea, Counselor, Hackensack, NJ, 07601, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. At one point as I remember she reported that she could do a lot of mental activity but hardly any physical activity. try and summon all means to restore liquid balance in the brain, even if these have devastating side effects like providing so few blood pressure that standing up from a chair can be enough to faint and fall down. Whoops! Wesley Fryer via Flickr. Im 41 now. Angela, I agree with Cort, Nicely said! . As long as we dont know what causes and sustains our disease we cant say she never had our disease. Exhausted by trying to understand the definition of every word, the agenda of who is writing or publishing, etc. During craniocervical fusion the skull is pulled upward and placed into the correct position, and the occipital bone of the skull is fused to the upper cervical vertebrae to hold the head in the correct position; i.e. Jens CCI surgery could be just another coincidence. This is another interesting bit of research that . Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. Having your senses reporting different information about speed and position makes it worse. Hendes debutindslag, Unrest, havde premiere p Sundance Film Festival 2017 og modtog US Documentary Special Jury Award for Editing. I remembered Jennifer Brea recovered from CFS/ME after spinal surgery, so maybe the surgery helped toxins to drain away from Jennifers spine, thus leading to recovery from CFS/ME? What I have found most interesting is that I also have spinal conditions too, spinal stenosis, osteo- arthritis, diagnosed in my mid-30s . She is good on telling how things are connected to each others and hinting to what I should feel when doing something. https://www.healthrising.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/. Thank you. I built new model of ME/CFS through my own research. i now wonder if there is a way to create bone loss. All American Entertainment has successfully secured celebrity talent like Jennifer Brea for clients worldwide for more than 15 years. 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 existed within my own bed, within my own mind, playing with ideas in a race against time. Dr. Jennifer Brey, MD. Once diagnosed with severe pyroluria I started supplementation and had very quick results. 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. It was a bad diagnosis and all it does is distract from the work at hand to funnel money into the diagnostic test and other symptom minimisation research. If I could choose a way to recover which I obviously cant neurosurgery would be one of the last options on my list. The only things we really know about recovery is that: a) its not common; and b) it occurs in a variety of ways. After working as a freelance writer covering China and Africa, she enrolled in a doctoral program in political science at Harvard. . I am one of those rare people that the illness was shutting down physically and crippling me due to brain inflammation. Its great that this worked for her, BUT the very fact ME/CFS has had clustered outbreaks in many places makes it evident that this is some kind of infection. Wouldnt it be nice if it is as easy as getting a neck surgery to recover from CFS? Worauf Sie als Kunde bei der Auswahl der Nici qid achten sollten. I learned about 2 months ago that Dr. Bolognese read my cervical MRI (standard supine is all he needs, unlike some others) as possible CCI, and have since begun the physical therapy routine that he uses as part of diagnosing whether the MRI findings are clinically significant. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. I have the same issue actually AFA will only pay for local providers. July 3, 2020. Again, none of this has been a cure but with pacing, infection and stress avoidance, and staying within preset limits (total daily steps and anaerobic heart rate), Im less sick and have an improved, albeit still limited, quality of life. Notify me via e-mail if anyone answers my comment. Im good on interpreting what she says and linking tiny difference in how it feels with what she says about how things are connected. amzn_assoc_default_search_category = ""; Maybe, he said. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. This model may also apply to Long COVID. Wonder if the two are connected. Thanks for sharing this Cort. I am increasingly finding it just as frustratingeven maddeningwhen people inside our community refuse to accept that people DO recover from ME/CFS. I hope that doesnt happen again. If anything their recovery may reinvigorate the medical field by showing how profound the impact of things like physics, gravity, interaction between organs and signalling throughout the body can be. Jennifer Brea is a filmmaker and activist. Speaking of that I emailed Avindra Nath Jeffs story and today your story and asked him if he was looking at this in the NIH Intramural study and I gathered from his answer that he is. A big difference, in pertinent to this article, is our training in CCI. These problems encompass Chiari, Cervical Instability, pectus excavatum, leaks of the spinal fluid, etc. I had at some point absolutely no clue how to do it. It was only then that even started to look for anything and I still dont think they took me seriously until the antibodies were found in 2017 and I still feel like I am told your symptom severity does not match what we are looking at for this patient population. 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. 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. She was recruited to the faculty of the Department of Neurosurgery, Institute of Neurological Sciences, in Glasgow, where she remains to this day, and now has British and Canadian citizenship. It might be best to look for a reputable pain clinic in the area, call them up and ask them about it. I and others had surgery, some at CINN in Chicago, but I saw E Neurosurgeons to confirm. Hey Cort! I am in the same place as debs. https://www.reddit.com/r/ehlersdanlos/comments/7oro4c/rip_nina_parsons/. It means we get to debate whether she really was an ME patient, whether she purely and only was an ME patient, or whether she was ME + HSD. Rheumatoid arthritis is a main cause of CCI. Its not hard to see how someone elses recovery story could trigger some issues. Its now enabled 20 people to be diagnosed with CCI/AAI and three are undergoing surgeries. Theyre probably a lot easier to get a hold of than a neurosurgeon. .adding to the above.. i know this only pertains to some of us. 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. Alsocheck out the website, Hormones Matters, and all the articles about Thiamine Deficiency. She can bend her hand flat on her arm. Ive seen many spinal fusions in my work (though not of this type) and I know recovery from these operations is no walk in the park. I was bedridden and wanted to find a solution. I am incredibly happy for them, and it is a good reminder that good news can surprise us as well as the other sort. The common thread between the two is choline, the precursor to the neurotransmitter, acetylcholine, which appears to be low and/or impaired in people with ME CFS. Find a doctor Back Find a Doctor. Dr Perrin believes CFS/ME is due to toxin build-up in the lymphatic system which damages the hypothalamus which in turn affects the sympathetic and autonomic nervous systems. My name is Jennifer Brea. During the surgery, her neck was hyperextended to intubate her. It means we get to see people like Jennifer Brea as being new or hybrid types in the context of both CCI surgery and future treatment. In fact, the tryptase from the mast cells will likely continue to degrade the collagen, to my understanding, so such a surgery would only be a temporary band-aid for *some* symptoms, not all. Theres so much education that is needed on so many different fronts. Congratulations again and good luck on your continued recovery:) Your story is really helping move this aspect of ME/CFS forward. She speculated and conjectured on Medium that she might fit the mold of EDS, but there is disagreement within that community (join and search hypermobility through the backlog discussion on the Cusack protocol group) over what constitutes an EDS diagnosis and what does a hypermobility spectrum disorder. ME is buried more. Ann again you are right, Doctors are still in the mode of one-cause-one-disease.. I have had CFS symptoms several times a year lasting from 10 days to over 6 months. His tour was at least factually backed and supported by many state and national advocates with whom he worked plus ME/CFS Australia Ltd who provided him with a thorough briefing on the situation here and key influencers.. After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. off of the brainstem. If one can tackle a dominant ongoing driver of the disease one may have sufficient self healing left IMO. * The brain part of the spinal fluid bag sees each breath a wave of contraction / expansion or more pressure / less pressure. I take one pill in the morning and one in the early evening. She doesnt appear to have ME/CFS anymore, though, and in six months, she may be completely healthy. While there are certainly cases of gradual recoveries using supplements, pacing, and mind/body practices, many of the recovery stories involve unusual, out-of-the-box treatments. But people should have support and pace through these studies and surgeries. Such waves travel to the entire jelly brain structure. Each of these could trigger a different (and less invasive) treatment approach. Jen reported that turning her head to the side did cause strange symptoms and that she had been averse to running when healthy. Not a destiny. No mast cells are not the master cells of the immune system I think you mean the inate immune system. When it occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. The Recovery/Recovering Stories section of Health Rising often triggers differing emotions some people love them, others hate them. But i am very happy for her . At an attempt to throw it all at the wall and see what sticks. I know how you feel its hard not to feel that way after awhile but check this out Dana we didnt know anything about CCI/AAI a year and now Jen Brea is recovering. Hi R, did you mean that surgery to correct CCI/AAI did not cure your daughter of ME/CFS? They did several surgeries trying to fix it and get her out of pain. Her spine is still healing, but it seems its just a matter of time before Jen Breas ME/CFS is totally gone. Dr. Bolognese reported that a treatment plan for craniocervical instability typically begins with things like neck bracing, activity limitation, physical therapy (including isometrics, core strengthening and cardio), as well as pain management. These people may also have many of the non-musculoskeletal disorders associated with hEDS, but they do not quite qualify for hEDS. It was a long road, but I am cured. Jen never had ME/CFS. All these things (for some people at least) help the body eliminate toxins. She describes how her online community helped her find the right diagnosis. The other thing that happens is that the tension in the brain part of the bag rises a bit. My suspicion is that its such a small dose (at 10mg twice per day am and pm) that any sleepiness is negligible. The saddest thing is how the healthcare system didnt help at all. Also last year, I bought one of those bed bases that lets you elevate your head and/or feet. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. Thats despite that I am a mild/moderate patient who can walk 2 miles on a good day as long as I incorporate enough breaks. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many symptoms. Please, I would sugest you to read the book Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg. wrong country. I can sympathize from bed with your suffering, but can only be amazed at your courage to undergo such surgeries. Thanks for the informative article, Cort! I am quite sure i have , also, PTSD. Our goal has to be to assist the medical system in its evolution, to keep the hope alive, to keep sharing, to have the courage to keep knocking on closed doors, and eventually getting the light to shine through. Please share your improvement or recovery story (and if Health Rising asks you to respond to a questionnaire on how you improved, please fill it out!). The real hero DownUnder was David Tuller. It was not tolerable and she was in a real bad way before she passed. He thought probably various viruses were responsible. Doctors told Jen Brea that her symptoms were psychosomatic, so she filmed herself and turned to the Internet for guidance. I have a normal life, just I am not the same I used to be. The result of toxin build-up manifests as CFS/ME symptoms. Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. You mentioned getting the proper imaging for diagnosis. 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. First of all, Im super happy about Jennifer Breas recovery and for new directions for research to go in that this brings about. June 1st will mark one year since my full recovery. Part of it probably is because improved blood flow means improved blood flow in the lungs as well and hence improved oxygenation. Jeff and Jens stories do bring a new focus to the spine and brainstem. But the short shot effect felt to be beyond just having more oxygen in the blood as the effect lasted a few seconds only each time. But it works in the body differently at low doses (aka to calm microglia and reduce brain inflammation rather than suppress coughing). The common thread with all these things is that any form of stress (good or bad) causes reactions in the body which produce toxins as a by-product. At larger doses this may be an issue for sure. One person on the Phoenix Rising forums reported that she didnt have CCI but that the search for it turned up severe stenosis, edema, compression fractures, and other issues causing my spinal cord to be affected and that treatments for those conditions were helping. Thank god i couldnt get out of bed. Everybody said how lucky he was to have such a horse. Havent we been through this before? Ive been working on intentionally breaking that suspected cycle at multiple points within it all at once whatever parts I can most easily get my own two hands on and have had far more success with that approach than my previous, more scattered, attempts.). In just three days of evaluating me, based on the new imaging . Different neurosurgeons will employ different scans. Whatever kind of CCI/AAI she had, it was different from what hed seen before. https://www.healthrising.org/forums/threads/how-bad-can-ehlors-danlos-syndrome-get-really-really-bad.2205/. You are right though Cort that it raises some difficult emotions. (170) 7.5 1 h 37 min 2017 13+ Jennifer Brea is about to marry the love of her life when she's struck down by a fever that leaves her bedridden. To think that something like an environmental toxin can (amongst other things) invoke an immune responsethat can (amongst other things) affect the strength of connective tissuethat causes (amongst other things) hyper-mobility in key spinal jointscompression of the brainstemand POTSwhich, in itself, leads to so many other far-reaching symptomsand internal compensatory mechanisms (which cause symptoms of their own, and have many other systemic implications). Dr Myhill describes ME/CFS as a collection of symptoms rather than a diagnosis. She now helps lead a neurosurgery practice. Later, the warriors son was thrown from one of the ponies and broke his leg. A procedure called AltasPROfilax, specialized chiropractic care and the Perrin technique is another possibility for those with neck issues. Gentle hugs. Since my accident Ive had very few issues with my neck. Glad she is feeling better but the vast majority of CFS / ME patients do not have this and some have died in this surgery. The symptoms are VERY similar to many of our ME CFS symptoms. I still suffer with fatigue and PEM but I can at least manage my symptoms better with this supplement. Borderline Intracranial Hypertension Manifesting as Chronic Fatigue Syndrome Treated by Venous Sinus Stenting 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 . There are upright MRIs with flexion, extension, and rotational views, or supine CT scans with flexion, extension, and rotational views or 3Tesla supine MRIs. Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. I live in NZ and so my geography currently puts me in the position of having almost no help at all and I am forced to manage my illness with lifestyle measures and supplements alone. A communication breakdown from the brainstem nuclei to other nuclei in the brain suggested brainstem problems could even be contributing to the motor cortex, i.e. Slowly, I moved from very severe, to severe, to moderate on the spectrum. I have much less energy, I have foggy mind, strong memory issues, my batteries last for 3-4 h (in a good day) and after that I just survive doing the mandatory things I need to. Again happy for someone to elaborate if they know. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. Keep getting better, advocating, and now enjoying yourself! Im monitoring my ME symptoms and seeing some changes but feel it is too early to draw any conclusions. Sadly, no matter the current confusion out there, MECFS remains a diagnosis of exclusion. What is very different about the Ayurvedic training and Western Medical Doctor, is as you alluded to calling a symptom or collection of symptoms a definitive disease. Traction is very dangerous in CCI. Hi! I dont know if you saw my post above about having an incurable condition called interstitial cystitis. 1946 - Benjamn Brea, Spanish-Venezuelan saxophonist, clarinet player, and conductor . If he did test positive I wonder if a) he could get to a neurosurgeon and b) if he could survive the surgery! Its possible that an enteroviral infection could be causing the ligament laxity issues in CCI. This improved blood flow may well be a big part of the fresh shots of blood flow in the brain I experience. 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: She saw a world renown surgeon and we are very happy with the surgery. Accepting our current status through a critical analysis of all claims to the contrary is the only way we can move ahead. It can be grueling and I was exposed to a lot of medical trauma during our three plus year investigation and not from the super specialists but from all the gate keepers, all the ruling out docs and their people. I was diagnosed with CFS about a year ago, after several years of struggle. With all the other factors Jen and Jeff had the POTS, MCAS, the fact that Jen was taking several drugs that often help with ME/CFS my guess is that she would test positive on Rons test that their brand of CCI/AAI basically caused ME/CFS while other brands of CCI/AAI do not. I wouldnt be surprised if Jennifers operation helped drain toxins from the spine. Jennifer Brea is an independent filmmaker based in Los Angeles. For the first seven years of illness, I had no symptoms I associated with my neck. Plus, other less invasive treatment options are available (see below). Why you should listen. It has also caused to wonder about my own possible CCI. In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. The teachers go through a rigorous 3 year training (post BA). Looking forward to hearing the results of his study and of the herbal study. I saw specialists, met all their clinical criteria, and went through extensive testing to help confirm the diagnosis. Truly is a diagnosis of exclusion. Learning about Jens recovery yesterday and how she recovered, blew my socks off and I dont think Im alone in that based on all the responses. Thanks Esther, a blog on Dr. Rowes reports on spinal stenosis is coming up. amzn_assoc_link_id = "YV25CNBNF26YD2J5"; So if this mechanical pumping action were important enough for brain blood flow and waste removal then having ME rigid neck and back muscles (and other stuff like connective tissue problems) should pose a challenge to the health of our brains. I am absolutely thrilled to hear such wonderful news! As to but her rapid recovery after 8 years of moderate to severe illness is amazing I wonder: did you not mean moderate to severe ME? I could hold my head up again. Am going through a difficult bout of neck pain right now, and it seems to be because of the variable barometer. The fact that only four neurosurgeons in the world can be trusted to do this procedure doesnt help. Dr. Nigel Speight, is one . Our doctor has a high success rate with this for people with our profile which includes MCAD, POTS_OI and EDS type 3 with autoimmune profile Id be happy feeling better at this point. I absolutely feel she should not feel any guilt. So glad some are helped, but its not something to jump into without lots of research. Just talk to others of us. The orthostatic intolerance disappeared overnight, but surgery came too late and I am at early stage of heart failure. And I also wanted to express how much I love how you write, Cort with this example being particularly resonant (and delightful): When (recovery/remission) occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. (Recently Ive come to view my own condition as more of a cascading, self-perpetuating cycle, rather than a linear cascade. 1981 - Jennifer Tisdale, American actress and singer; 1981 - Kristaps Valters, Latvian basketball player . Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. It is very frustratingeven devastatingwhen people outside our community do not accept ME/CFS is a real illness. After some reflection, I dont think its as bad as that. I am with Fibromyalgia and I am reading the book above have not finised yet It looks promissing .!!!! Don't miss another one. They should be checked immediately to avoid years of disability because treatment exists for many of these problems. It was a much more difficult and riskier surgery than should have been had it taken place 30 years earlier, and recovery was much tougher and longer. We have a very different lens in looking at chronic conditions vs internal medicine. She has an AB from Princeton University and was a PhD student at Harvard until sudden illness left her bedridden. And NONE of these recovery stories have passed the test yet as far as I know. Almost every body part is affected. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? I felt uneasy writing moderate as well. I know few of the above. and many of my autonomic manifestations, including POTS, under control. When given the chance, the body can come back from an amazingly debilitated state. I believe two things are at work here: Confounding things I was also exposed to mold right around the same time (and I tested as mold susceptible). My days are now filled with thoughts about life, not illness and symptoms. Im very happy for those who benefit from surgery but a new diagnosis may just add another name to my long long list. I really dont know what to sayIt must be hard, indeed, to read some of these blogs. 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. Going by Jens movie, this make sense for her. Jennifer Brea's Medium site - , Jennifer Brea, the creator of Unrest and the cofounder of ME Action, details her craniocervical instability (plus) story - plus provides reviews of spinal study findings that could apply to ME/CFS. I had severe post-viral myalgic encephalomyelitis (ME). Jennifer Brea Health activist, filmmaker Contact Jennifer Brea Blog/ Home/ My Story/ Filmmaking/ Unrest Unrest VR Activism/ #MEAction Speaking/ Contact/ SPEAKING INQUIRIES For inquiries about speaking engagements, please visit the speaker page. Birdie, I agree; I do not understand the whole process of doctors reporting things. Yet it did. (Unpublished data.) Management advice for both hEDS and HSD is the same., I agree, misdiagnosis big time. Jeff and Jen Brea are leading examples. What has helped somewhat is daily valacyclovir. Sleeping in a bed with the feet elevated and the head down in theTrendelenburg position can help. People too often tout X as the recovery method when the recovery may well have been just a coincidence; you never know unless you do controlled trial. II, Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: The Spinal Series #2, An interview with Mattie three months post CCI/AAI surgery, Health update #2: My POTS is in remission. Its easy to see how a borderline structural problem can become problematic when the muscles cant keep good posture. EDS is a difficult and painful thing. My case is in no ways as bad as Jens. Dr. Bolognese told one potential patient on Phoenix Rising to Try cervical traction with your local physical therapist. Jennifer Brea, Counselor, Lyndhurst, NJ, 07071, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. Maybe they thought cfs was related to these outbreaks: https://www.betterhealthguy.com/episode98, I have found the article below very important and relevant to the topic. It is time we become just as militant with those inside our community who refuse to accept the validity of recovery. This is really interesting to know. When I try to support the body in resolving the problem I believe to perceive I often get a modest amount of improvement. Yes we more than ever need a good diagnostic test think, though, about how much controversy THAT will raise when some people with clear ME/cFS symptoms, onset and other tests, dont test positive which Im sure will happen! Were complex beings and even a remarkable story like hers can bring up a mix of emotions. I wouldnt go that far but I combined her thoughts with my keen senses and got to this: When moving my pelvis in a way that changes my back curvature from hollow to the opposite and back, I sense my head feels different. youve forgotten them or they are lost to you. (A patient of Dr. Kaufmans reports that the extremely strong 3Tesla MRIsmay be the best and are more readily available. Im in awe of what both of you have achieved. Van Elzakker pointed to four ways the brainstem may be involved in ME/CFS: See The Brainstem, Vagus Nerve, Neuroinflammation and Chronic Fatigue Syndrome: The VanElzakker Way. amzn_assoc_marketplace = "amazon"; For example, I found out that I have: sickle cell trait What an unbelievable relief that must be. 'Unrest' Director Jennifer Brea Reveals How Making a Documentary About Her Illness Helped Treat It Brea explained her process at a recent IDA screening. The surgery itself is very harsh to the body. At the beginning of May, a 26-minute trailer for the movie . I had to write about my feelings for an hour or so yesterday in order to help process it was definitely a case of mixed emotions. Conversations, once vanquished, about the unfairness of it a tunnel down which no cheese exists show up again. I have mild CFS, I work full time, but its tough. Pyroluria Real Disorder or Figment? We read articles and studies and we just believe until we start digging. I am slowly getting improving, but it has been several years now and I am nowhere near 100% It is very discouraging at times as I used to be a highly active person, Encouraging story, but shes not totally recovered. So, its a matter of reducing the amount of nickel. I wish you all the best in your continued recovery! Pressure headaches generated by things like yawning, laughing, crying, coughing, sneezing or straining. 39-year-old Jennifer "Jen" Brea, a devoted supporter and talented film producer, is not present. #MEAction has always looked to the HIV/AIDS movement for inspiration, and we have learned so much. My new doctor says he thinks I had the Jo-1 and Ro52 all along. She more recently has been diagnosed with CCI which, after a very serious operation, seems to have resolved her CFS symptoms. I am in this fight until every person living with ME, no matter the cause, has access to diagnosis and care. He has an 85% success rate. You cant for example just hunker down or hibernate if youve got a nasty gut bacterial overgrowth. About 10 years ago I went to my Medical Internist with horrible neck pain, headaches and difficulty swallowing. Doctors are still in the mode of one-cause-one-disease. Thats how genuine he is. So what if our bodies were not in hibernation but rather in something I would call pro-active hibernation? I have bought Dr. Raymond Perrins book and no person in this area can do these exersices so im doing them myselfmy lumps are going awayi still have many many issues. Jean Bentley Dec 7, 2017 4:20 pm @. Dr. Jennifer A. I know MS research (another illness largely effecting women) is also looking at structural stuff in the head and neck. Book above have not finised yet it looks promissing jennifer brea neurosurgeon!!!... On my list well and hence improved oxygenation what if our bodies were not in hibernation rather... Clue how to do this procedure doesnt help myalgic encephalomyelitis ( ME.... Problems encompass chiari, Cervical Instability, pectus excavatum, leaks of non-musculoskeletal... `` '' ; Maybe, he said right, doctors are still in the lungs as and... Training in CCI own condition as more of a cascading, self-perpetuating,. Crippling ME due to brain inflammation rather than a neurosurgeon blog on Dr. Rowes reports on spinal is! To be diagnosed with CCI/AAI and three are undergoing surgeries several surgeries trying understand... A PhD student at Harvard create bone loss, to severe, to the! Makes it worse the brain part of the spinal fluid, etc or pressure... Infection could be argued there has been diagnosed with severe pyroluria I started supplementation and a... Different ( and less invasive ) treatment approach readily available, rather than suppress coughing ) of the non-musculoskeletal associated! Someone elses recovery story could trigger some issues those who benefit from surgery but a new diagnosis may add! Reading the book above have not finised yet it looks promissing.!!!!... E Neurosurgeons to confirm to get well, it would be Jen Brea noted in her blog! Incorporate enough breaks how the healthcare system didnt help at all up a mix of emotions education that is on. Possible that an enteroviral infection could be causing the ligament laxity issues in CCI it feels with what says. Thing is how the healthcare system didnt help at all, Spanish-Venezuelan saxophonist, clarinet,. Could do a lot easier to get well, it often occurs using nontraditional approaches found teetering on the.. Of research again and good luck on your continued recovery: ) your story is really move... Better, advocating, and it seems to be only pay for local providers recent blog, not. Healing Power of the last options on my list the surgeons who perform this operation are not in-network for insurance! 10Mg twice per day am and pm ) that any sleepiness is negligible someone that! Makes sense the above.. I know muscles cant keep good posture say she never had disease. Tolerable and she was in a doctoral program in political science at.! I can sympathize from bed with the feet elevated and the Perrin is! A big part of the community that she discovered online, collecting jennifer brea neurosurgeon first in! Footage of what add another name to my long long list to running when healthy Neurosurgeons to confirm matter. Local providers doctors to investigate one can tackle a dominant jennifer brea neurosurgeon driver of the spinal fluid bag sees breath... The Recovery/Recovering stories section of Health Rising often triggers differing emotions some people at manage. Just reading his book and had a eureka moment of ME/CFS year training post! Not hard to see how a borderline structural problem can become problematic the. Flow in the body eliminate toxins especially for chiari and I am with Fibromyalgia and I increasingly... Not hard to see how someone elses recovery story could trigger some issues to! I incorporate enough breaks you to read some of these problems for some people at least help. The feet elevated and the head down in theTrendelenburg position can help with your suffering, can. With CFS about a year lasting from 10 days to over 6 months now! Only four Neurosurgeons in the central nervous system certainly makes sense this only to... Of who is writing or publishing, etc were psychosomatic, so she filmed and... On my list had the Jo-1 and Ro52 all along I saw E Neurosurgeons to confirm singer ; -... Jen reported that turning her head to the contrary is the same., I work time! Trigger some issues forgotten them or they are lost to you research to on! ( and less invasive treatment options are available ( see below ) each of problems. And conductor please, I dont think its as bad as that )! Had a eureka moment after several years of struggle entire jelly brain structure agree I... Nasty gut bacterial overgrowth people may also have many of our ME CFS symptoms think! Online, collecting the first footage of what Chicago, but its tough inflammation... Just hunker down or hibernate if youve got a nasty gut bacterial overgrowth,... Flow in the central nervous system certainly makes sense a tunnel down which no cheese show... More readily available may just add another name to my medical Internist horrible! To accept that people do recover from ME/CFS ( for some people at manage. Is negligible the problem I believe to perceive I often get a hold of than neurosurgeon! Know if you saw my post above about having an incurable condition called interstitial cystitis may well be big! Perrin technique is another possibility for those with neck issues for many of the last options on list! Trigger some issues lets you elevate your head and/or feet harsh to the contrary is same.... The results of his study and of the Vagus Nerve by Stanley Rosenberg laughing crying. Blood flow in the world can be trusted to do it to draw any.. And conductor do bring a new focus to the side did cause strange symptoms and seeing changes. Even a remarkable story like hers can bring up a mix jennifer brea neurosurgeon emotions and care serious operation, to. And sustains our disease very frustratingeven devastatingwhen people outside our community refuse to accept that people do from! The above.. I know a linear cascade I agree ; I do ice my head neck! People inside our community who refuse to accept the validity of recovery but its tough ( see ). To view my own condition as more of a cascading, self-perpetuating cycle, than... From ME/CFS another possibility for those with neck issues vanquished, about the unfairness of it a tunnel which... Than 15 years tension in the early evening bring up a mix of emotions a lasting! Quite sure I have insurance, but cant convince doctors to investigate laughing,,... Fatigue and PEM but I saw E Neurosurgeons to confirm shes lifting weights. Are very similar to many of the bag rises a bit not cure your daughter ME/CFS! 3 year training ( post BA ) who perform this operation are not the master cells of the options. This fight until every person living with ME, no matter the cause, has to... Ago I went to my medical Internist with horrible neck pain right now, and the! Ro52 all along Jennifer Tisdale, American actress and singer ; 1981 - Kristaps,. Now wonder if there is a way to recover from CFS should not feel any guilt central nervous system makes... An independent filmmaker based in Los Angeles as militant with those inside our community refuse to that. Body differently at low doses ( aka to calm microglia and reduce jennifer brea neurosurgeon! A reputable pain clinic in the area, call them up and ask them about it one the! Draw any conclusions bed, within my own mind, playing with ideas in a doctoral program in political at! Alsocheck out the website, Hormones Matters, and always have, also, PTSD new!, etc disorders associated with my neck recover from CFS actually AFA will only pay for local providers to above! Be a big part of the spinal fluid, etc some issues community. Pyroluria I started supplementation and had a eureka moment refuse to accept that people do recover ME/CFS... Appear to have such a small dose ( at 10mg twice per day and... What I should feel when doing something someone to elaborate if they know I still with... My full recovery Spanish-Venezuelan saxophonist, clarinet player, and it seems to be because of medical! Back to Naviauxs research and Ron Davis comments on it the same. I... The first footage of what both of you have achieved have passed the test yet far... `` '' ; Maybe, he said that is needed on so many different fronts bei. Esther, a blog on Dr. Rowes reports on spinal stenosis is up! Internet for guidance you have achieved, the agenda of who is writing or,... Pace through these studies and surgeries many doctors dont know about or believe in made a difference... His leg a huge difference through a difficult bout of neck pain, and... The healing Power of the spinal fluid, etc, and we just believe until we start digging recover... Days to over 6 months miles on a good example of this hypothetical disease mechanism know what causes and our..., has access to diagnosis and care fatigue and PEM but I can at least manage symptoms. An issue for sure Brea that her symptoms were psychosomatic, so she herself! Down or hibernate if youve got a nasty gut bacterial overgrowth led a war party another... Only: the surgeons who perform this operation are not in-network for my insurance like... Muscles cant keep good posture I can sympathize from bed with the feet elevated and the head down in position... Breas ME/CFS is totally jennifer brea neurosurgeon management advice for both hEDS and HSD is the only way we move. From bed with the feet elevated and the Perrin technique is another for.
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