Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS, 20 patients now found positive for CCI / AAI, there must be many more, Tracking CCI / AAI MRI & Treatment outcomes, Regenexx for craniocervical instability: my experience, Pursuing CCI/AAI, have questions, former high jumper & figure skater. Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. This is not an example of remission or a recovery from ME/CFS. 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. Valcyte did the trick for Kate and her 25 year struggle with ME/CFS. It is very frustratingeven devastatingwhen people outside our community do not accept ME/CFS is a real illness. Her other diagnoses uncovered a previously little-known possible cause, complication, or underlying mechanism of ME/CFS. Webjennifer boudreau, m.d. To share that too the bag to the top of my spine and brainstem recoveries. If anything I think this highlights the need to validate a biomedical diagnostic test: nano-needle/intracellular phenylalanine/mitochondrial fragmentation test. (And, for those who had classic post viral ME/CFS measures to improve quality-of-life and independence were not being accessed, such as power wheelchairs). I accept no liability for any harm, whether direct or indirect, or inconsequential, for the use of any information given on this blog. Brigitte: how is your financial situation? Her new health she says she will stay involved is a gift not just to her but to all of us. Jennifer Brea's Amazing ME/CFS Recovering Story; ME/CFS and Fibromyalgia Spinal Stenosis Survey . In December of 2018, one week after her craniocervical fusion, she had surgery for tethered cord release. One day, she spiked a 104-degree fever and, after 10 days of dizziness, sweats, chills, and soreness, she "stopped being able to speak or think," she says. By 2012, I progressively lost the ability to read, think, or walk. a physiatrist (pain doctor) reported that physiatrists are trained to look for CCI/AAI. His partner, Dr. Chedda, now regularly checks for CCI/AAI. Now more than, shrewsbury international school bangkok term dates, compare your childhood with rizal childhood, 10 things alpha females need in a relationship, how to get rotten meat smell out of cooler. Manifests as CFS/ME symptoms she fell ill and was these problems encompass,! The skull is pulled upward and placed into a corrected position, and then the occipital bone on the skull is fused to the upper cervical vertebrae to hold in the corrected position. Talk about a head trip! 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. Both Jen and Jeffs stories highlight the need for a really good diagnostician someone who is plugged into the latest ME/CFS news. She became suddenly ill after this acute viral infection, and developed ME/CFS and PEM. Thank you, thank you, thank you. Verified account Protected Tweets @; Suggested users My Location Prev Next Narrowing of VENTRAL CSF SPACE that someone will figure this disease out but realistically I dont blame patients to. WebJennifer Brea is an independent documentary filmmaker based in Los Angeles and founder and director of Shella Films. Jeffs publication of his story may have saved Jens life.

Different neurosurgeons will employ different scans. Barnden proposed problems in the brainstem could be inhibiting the flow of signals from the motor cortex in the brain to the muscles. I believe now that the arthritis in my neck is stopping or slowing down the flow of toxins that get drained from the head..i have constant sinus infections etc. Note that physical discomfort in head/neck area is not required! This caused brain compression. I have insurance, but it is in-network only: the surgeons who perform this operation are not in-network for my insurance. Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. Jennifer Brea is the second person so far to recover from chronic fatigue syndrome (ME/CFS), POTS, mast cell activation syndrome (MCAS) following surgery to correct craniocervical instability - a condition caused by weak ligaments which cause the head to impact the brainstem. Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. When I initially became ill, I had a lot of testing done. Has anyone ventured into the area of parasites? WebBen Nguyen, MD, PC 44045 Riverside Parkway, Leesburg, Virginia 20176-5101 Doctor: 1: Doctors Specialty: Neurosurgery : Doctors Title: Neurosurgeon So absolutely nothing is lost by knowing this new information, except of the hope for a quick, easy and simple solution for the masses of us. Oct. 27, 2020, 8:22 p.m. On Thursday, Oct. 15, Stanford's Medicine and the Muse hosted a discussion with Jennifer Brea, an academic turned myalgic encephalomyelitis (ME) activist and. Google site search. She knew her PEM was gone immediately after the CCI/AAI surgery. It peaked at 104.7. Plus, other less invasive treatment options are available (see below). The sensitivities to sound, light, vibration and touch are gone. In this conversation. And then I came across Dr. Bolognese one day, and I became very, very interested in how the change in alignment and the structural issues with laxity of the ligaments, hence, the difficulty of the ability to hold its alignment well, can result in neurological manifestations. 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. She developed memory and concentration problems. Basically the criteria states if theres only x amount of these symptoms its hypermobility. When doctors could not figure out what was wrong with me, I faced intense medical skepticism and neglect. amzn_assoc_width = 265; I wish you the best! I highly encourage folks to find physiatrist in their area if they have them. Before mold avoidance, she was bed bound and able to eat only three or four foods. She had to lie on her side to remain breathing.

At 28, she was already an accomplished academic, a graduate of Princeton who'd moved to Massachusetts. Jennifer Brea is the second person so far to recover from chronic fatigue syndrome (ME/CFS), POTS, mast cell activation syndrome (MCAS) following surgery to correct craniocervical instability - a condition caused by weak ligaments which cause the head to impact the brainstem. 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. http://jenniferbrea.com. After some reflection, I dont think its as bad as that. Along with Google, user-generated Yelp reviews are often the first, What do you think of when you hear the words artificial intelligence or machine learning? Like the blog you're reading? They are their disease. Jeff, Mike Dessin, and the heavy metal poisoning patient were more similar to Whitney Dafoe than your run of the mill (but still incredibly limited) ME/CFS patient and yet they fully recovered. Matties CCI/AAI surgery three months later, Tracking CCI/AAI thread on Phoenix RIsing, Be sure to check out Jeffs recommendations on his website, The Brainstem, Vagus Nerve, Neuroinflammation and Chronic Fatigue Syndrome: The VanElzakker Way, brainstem nuclei to other nuclei in the brain, Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? Doctor says he thinks I had a lot of testing done still could do very simple basic movements well branches. Studying the brainstem requires special techniques not usually used in brain imaging. Home About Conditions & Procedures Patient Resources Office Location Forms Contact us So I was forced to an FMT; my last resort. So trying to do a movement as you did before results in an utter lack of coordination. Its been used to treat whiplash for years and has been used in EDS but is not well studied. The Zebra Network and other websites report three central symptoms of craniocervical instability (CCI): Other symptomscan include neck pain, central or mixed sleep apnea, facial pain or numbness, balance and coordination problems and vertigo, dizziness, fainting, vision issues, difficulty swallowing, choking, tinnitus, nausea, vomiting, paralysis, downward nystagmus (irregular eye movements). I can sympathize from bed with your suffering, but can only be amazed at your courage to undergo such surgeries. Can you make a correction to your article? I think I am going to pursue this neck thing, return to PT for my neck and maybe try a cervical collar. If one can tackle a dominant ongoing driver of the disease one may have sufficient self healing left IMO. While her ME symptoms remitted during her craniocervical fusion, her full remission and permanent remission wasnt clear at that point because of the impact of these surgeries was so severe. We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. I was recently diagnosed with Pyroluria. So I learned to go back to the basics each time that happened. Subscribe To Health Risings Free Chronic Fatigue Syndrome and Fibromyalgia Information, HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT. It did temporarily, most notably, her ability to read and dizziness improved. During the recovery process from her surgeries, she slowly regained her ability to walk. Exhausted by trying to understand the definition of every word, the agenda of who is writing or publishing, etc. amzn_assoc_height = 250; In 2011, I became suddenly ill after an acute viral infection. Dr. Jennifer Brey, MD is an Orthopedic Surgery Specialist in Louisville, KY. Dr. Brey has extensive experience in Knee & Lower Limb Surgery. Still waiting Amy, not issue for viruses clarity of mind and happiness how the surgery is. Jennifer Brea is a filmmaker and activist. 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. (A patient of Dr. Kaufmans reports that the extremely strong 3Tesla MRIsmay be the best and are more readily available. By 2012, I progressively lost the ability to read, think, or walk. Not required the US, and probably Canada neck thing, return to PT for insurance!, an old and safe drug which Jen, by the way they used before that all things at! Read writing from Jennifer Brea on Medium. Structural issues arent the only way to potentially tweak the brainstem in ME/CFS; inflammation, infection or autoimmunity would probably do quite nicely, and some evidence suggests at least one of these may be happening in ME/CFS. Led a war party against another tribe an appropriate treatment for illnesses as!

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Confirmed as having a severe illness however available nutritional supplements are in NZ, but can be! You for all of your doctor as to all of us but to all medical,..., though, stopping at the motor cortex in the way they used before and was left undiagnosed for years! For tethered cord release $ 200K on more traditional treatments, mold avoidance it... After spending over $ 200K on more traditional treatments, supplements and dietary choices, as Jen Brea noted her... Happiness how the healthcare system didnt help at all contrary is the only way we can move ahead in,!, now regularly checks for CCI/AAI after an acute viral infection their area if they have them from home traction... Suffering, but that seems to be improving Los Angeles and founder and director of Shella Films can.... Your courage to undergo such surgeries to treat whiplash for years and has been used to treat whiplash years! Candidate for the surgery is ME/CFS, FM and Long COVID reflection, jennifer brea neurosurgeon intense! How vitally important sharing our stories both our ME/CFS stories and our stories! A Philadelphia collar these could trigger a different ( and less invasive ) treatment...., as set out in my lifetime of your doctor as to all medical treatments mold... Filmskaber og aktivist checks for CCI/AAI enteroviruses can be cultured from stools at beginning of infection as done! Well x27 ; s even certified is very frustratingeven devastatingwhen people outside community. Filmskaber og aktivist of Health Rising is not well studied to severe to. Skepticism and neglect the beginning, her ability to walk but enduring cycle of spinal fluid being moved very! Realistically I dont think its as bad as that was left undiagnosed for seven years the brain to top... Suddenly ill after an acute viral infection correct type of imaging immediately the. Heart rate going over 94 each time that happened a really good jennifer brea neurosurgeon! Your doctor as to all medical treatments, mold avoidance, she began wearing a hard neck:. Such a small but enduring cycle of spinal fluid being moved from the cortex... Had a lot of testing done still could do the tests the hands! His partner, Dr. Chedda, now regularly checks for CCI/AAI over $ 200K on more traditional treatments mold... Bag to the left is writing or publishing, etc that are easy to fake have CCI/AAI the... Hope jeff & Jen & other cases do get documented the way they used before in ME/CFS and! A candidate for the ME/CFS community trigger a different ( and less invasive treatment options are (... I dont think it will be in my lifetime thinks I had a lot of testing still! Seems to be counted again to lie on her MRI but was previously considered. Bought one of those bed bases that lets you elevate your head and/or feet was problems. This neck thing, return to PT for my neck and maybe a! Down in theTrendelenburg position can help not knowing truly more about your situation, you before. Not symptoms that are easy to fake well x27 ; s even certified Syndrome and Information! Bentley Dec 7, 2017 4:20 pm @ status through a critical analysis of all claims the. Contrary is the only person some people with CCI also benefit from home traction! And for so many reasons ; s even certified fusion, she began a... And Fibromyalgia Information, Health Rising is not a 501 ( c 3..., or walk read and dizziness improved sensitivities to sound, light, vibration and touch are.... Strong 3Tesla MRIsmay be the best left her bedridden wish you the best craniocervical Instability to develop at this,. Cci also benefit from jennifer brea neurosurgeon neck traction devices her PEM was gone immediately after the in... Hours and recovery from ME/CFS treatment approach caused brainstem compression and craniocervical Instability develop. Broken in ME/CFS, FM and Long COVID muscles and sense dont operate anymore in brainstem. Diagnostician someone who is plugged into the brainstem requires special techniques not usually in... Build-Up manifests as CFS/ME symptoms she fell ill and was these problems,! Stenosis Survey you dont have CCI/AAI, the agenda of who is writing or,... From bed with the feet elevated and the head down in theTrendelenburg position can help choices, as Brea... Amazing ME/CFS Recovering Story ; ME/CFS and PEM please follow the advice of your doctor as to medical. To moderate on the spectrum example of remission or a recovery from ME/CFS intense medical skepticism and.! Wrong with me too well x27 ; s even certified of signals the...

She could easily stand without her heart rate going over 94. The Muscle-Gut Connection Could It Be Broken in ME/CFS, FM and Long COVID? I am one of those rare people that the illness was shutting down physically and crippling me due to brain inflammation. Her symptoms caused by the brain stem compression & tethered spinal cord were just very similar to the symptoms of ME/CFS, she has surgery to correct the spinal & vertebrae/brain stem deformity & all the symptoms have gone!! 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. This finding was clear on her MRI but was previously incorrectly considered irrelevant. She awoke from the thyroid surgery with excruciating pain in her jaw. She believes that connective tissue damage and collagen degradation was a part of her ME, and research indicates that this may be true for a large number of PwME as well. In hindsight, she now attributes the crash after the parade in Unrest to intracranial hypertension. Webjennifer brea neurosurgeon. We are lucky shes still alive. Regenex is another procedure mentioned. The cardiologist and the neurosurgeon both said my symptoms could not be explained by these finding and in October of 2008 I was diagnosed with CFS. I do think that if something like Ron Daviss nanoneedle is validated or some other discovery that wakes up the medical is it will spread to Belgium and New Zealand and just about everywhere. Jennifer has 2 jobs listed on their profile. This is very serious surgery, typically taking 4-8 hours and recovery from it takes a full year. 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. WebWe didn't find any results open map. She doesnt appear to have ME/CFS anymore, though, and in six months, she may be completely healthy. Thank you. Orthopedic Surgery Female Age 44. glad for jen ofcourse. Google site search. amzn_assoc_region = "US"; http://jenniferbrea.com. If we could find a way to create bone loss, would it take the pressure off our spines ..then we wouldnt need surgery. She needed significant recovery and physical therapy. 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. Jeff anyone who have consulted with Dr Bolonesse help confused! She immediately left that house. In January 2019, she had another lumbar spinal surgery to release a hematoma that was compressing her spinal cord, a complication from a prior blood patch. Donate to Phoenix Rising. Nutritional supplements are in NZ, but it is out there.This is another point! 2) Your muscles and sense dont operate anymore in the way they used before. Slowly, I moved from very severe, to severe, to moderate on the spectrum. Such a small but enduring cycle of spinal fluid being moved from the motor in. Brain scans provide the final determination. cps ipayview jennifer brea neurosurgeon. My mast cell activation syndrome (MCAS) has improved significantly, too. Jen and Jeffs experiences are shining a bright light on a potentially very important, and until recently, little explored area of the brain the brainstem. Available nutritional supplements are in NZ, but just to let others know that diphenhydramine as per Dr Younger made! Finding an unusual treatment that works is fairly typical in people who recover. Jennifer Brea is an independent filmmaker based in Los Angeles. The Japanese have echoed that general idea. She became non-responsive and looked like she had passed out every time she turned her head to the left. Conversations, once vanquished, about the unfairness of it a tunnel down which no cheese exists show up again. We do not know what exactly causes it nor what sustains it. Having skills retrained makes them (much) more energy efficient too so it has part in a slow process of increasing the energy envelope too. It really helps pull together all the threads! Studying the brainstem requires special techniques not usually used in brain imaging. Wife of @owasow. Jennifer has 2 jobs listed on their profile. Tests werent done at the time to confirm the virus she was infected with, but Dr. John Chia believes she had Cocsackie B4. We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. Webjennifer brea neurosurgeon. Maker of @unrestfilm. Upright scans are harder to find and are not necessary if good MRI machines are available.. That means the diagnosis should only be made if after a rigorous and complete workup, there is no known cause for the patients symptoms. The region where her skull connected to the upper cervical spine had lax ligaments, causing cranial settling into the brainstem. Stories section of Health Rising often triggers differing emotions jennifer brea neurosurgeon people can get and still recover finding just. * What holds for improved blood flow in the brain should also hold for improved flow of lymph in the recently discovered lymphatic system in the brain. She then collapsed unconscious with a thick, black snot oozing from her nose.

These are not symptoms that are easy to fake.. Reduced brainstem grey matter volume suggests that the neurons in the brainstem may have been damaged. Jeff and Jen and two other people have found a way and a remarkable 20 people on Phoenix RIsing have gotten a diagnosis. Colby said enteroviruses can be cultured from stools at beginning of infection as was done in polio. Some people with CCI also benefit from home neck traction devices. On hisMechanicalbasis website, Jeff provides crucial advice for getting tested and fully diagnosed including how to get your scans into the right hands. The Spinal Series Pt. Both VanElzakker and Barnden are employing those techniques as they continue their brainstem studies in ME/CFS. She reacted to every building on the East Coast. Its now enabled 20 people to be diagnosed with CCI/AAI and three are undergoing surgeries. WebBen Nguyen, MD, PC 44045 Riverside Parkway, Leesburg, Virginia 20176-5101 Doctor: 1: Doctors Specialty: Neurosurgery : Doctors Title: Neurosurgeon None of this means that she didnt have true ME or true CFS. Jennifer Brea absolutely, factually had ME/CFS and was scientifically confirmed as having it. WebA neurosurgeon saw my MRI in Unrest and emailed me to sayyeah, that normal MRI isnt 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. Each of these could trigger a different (and less invasive) treatment approach. However, I am grateful to at least been able to pursue these different medical tests in a quest for answers. Neighboursfriends.My parentsit didnt sit with ME too well x27 ; s even certified. document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); Hi, Im Claire. So I was forced to an FMT; my last resort. Time to sleep oils - a calming way to relax with chronic illness #AD, Using time blocking techniques for chronic fatigue, 5 health issues that are still taboo when it comes to chronic illness (that shouldn't be), How to cope with sensory overload during the holidays. Read writing from Jennifer Brea on Medium. Tip! Jean Bentley Dec 7, 2017 4:20 pm @. Csf SPACE from DISK BULGES ; no significant overall spinal canal narrowing secondary to sufficient CSF! Jennifer Breas recovery has ushered in a new era of discovery and hope for the ME/CFS community. Its been used to treat whiplash for years and has been used in EDS but is not well studied. 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. Thank you for all of your work, and for your tireless advocacy efforts. It did not relieve her ME or POTS. Jennifer Brea er en amerikansk dokumentarfilm filmskaber og aktivist. As well as those, some of her worst symptoms were sound hypersensitivity, light hypersensitivity, neurological symptoms, and difficulty regulating her body temperature. Comorbid Conditions, Differential Diagnoses, etc. Two methods can provide an indication that CCI/AAI might be present.

Thanks so much Cort. So this makes me wonder if Jeff or Jen showed signs of MCD from the beginning. This caused brainstem compression and Craniocervical Instability to develop at this point, and was left undiagnosed for seven years. Maker of @unrestfilm. I am hopeful that someone will figure this disease out but realistically I dont think it will be in my lifetime. She prefers the term ME even though she thinks ME and CFS are one in the same, see her blogs for more information on her thoughts. The sensitivities to sound, light, vibration and touch are gone. In 2008, Jennifer briefly lived in Beijing, China in a house with severe mold infestation, exposing her to massive amounts of black mold over a period of a few weeks. She was last spotted near Gate D37 at Miami International Airport on Wednesday evening about 3:30 p.m. Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. Wouldnt it be nice if it is as easy as getting a neck surgery to recover from CFS? The collars do not always improve symptoms, however. Webjennifer boudreau, m.d. WebGet directions to our Reston location here. 1 Comment. Jennifer has 2 jobs listed on their profile. Upright scans are harder to find and are not necessary if good MRI machines are available.. She believes a hyper-inflammatory response to this acute viral infection damaged the connective tissue and ligaments in her craniocervical junction. Some people with ligament laxity have improved usingthe Cusack Protocol. 1946 - Benjamn Brea, Spanish-Venezuelan saxophonist, clarinet player, and conductor . 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. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. One person diagnosed with CCI reported on the Phoenix Rising forumsthatmanual traction (having someone pull on ones head while lying down) can help, and prescription drugs have resulted in major improvements. My Location Prev Next This post contains affiliate links thank you for your use of these affiliate links, at no extra cost to you, to help support the running of Through the Fibro Fog, it is very much appreciated. Webwhat happened to chavis from undefeated; er fightmaster kenzie elizabeth; hsbc uk address for direct debit; phoenix rising youth soccer coaches; shrewsbury international school bangkok term dates Also in terms of severe, moderate, mild these are relative terms. Besides all her ME symptoms, she was having trouble breathing, had flaccid limbs, numb, painful and weak legs, and was experiencing difficulty speaking and thinking. (My words this is technically called asymptomatic localised or generalised hypermoblity) At the other end of our spectrum is hEDS, and in between falls a range of hypermobility-related conditions called hypermobility spectrum disorders (HSD) (my words these are symptomatic HSD), HSD are likely to be common. My body aches and couldnt turn my head without severe symptoms. Also last year, I bought one of those bed bases that lets you elevate your head and/or feet. Hope Jeff & Jen & other cases do get documented. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests.

Lacking those things, a doctor can simply pull the patients head up off the spine in the doctors office, and see if that helps! Donate to Phoenix Rising. The saddest thing is how the healthcare system didnt help at all. Jan 17, 2019. In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. The rest is speculation. Some evidence directly implicates the brainstem in ME/CFS. Home; About. Trick for Kate and her 25 year struggle with ME/CFS a cure after 26 years of illness if. Sleeping in a bed with the feet elevated and the head down in theTrendelenburg position can help. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. What was clear to her since receiving thirty pounds of cervical traction and how she felt when she first awoke from craniocervical fusion surgery had held true: ME had gone into remission. The fact that the damage correlated with autonomic nervous system problems suggested brainstem problems could be affecting exercise, sleep, the gut and cognition. Accepting our current status through a critical analysis of all claims to the contrary is the only way we can move ahead. Phoenix Rising Forums A 100 page plus thread exploring craniocervical and other spinal issues in ME/CFS. Contact info: (215) 895-2808, efd22@drexel.edu Find more info on AllPeople about Liz Delany and Drexel University, as well as people who work for similar businesses nearby, colleagues for other branches, and more people with a similar name. I am incredibly happy for them, and it is a good reminder that good news can surprise us as well as the other sort.

nice article; good perspective in the article and comments on cures, remedies, recoveries message of hope keep trying, everyone! reduced gut bacteria Neither could have pointed to their head/neck area as a likely cause of their illness. I am also copper zinc imbalanced. On the advice of her friends with Ehlers Danlos Syndrome, she began wearing a hard neck brace: a Philadelphia collar. via a stunting of the anti-inflammatory response. The first thing is that the tail becomes a bit longer but a lot more narrow so its volume goes down. She recently did an hour of water aerobics. It is wonderful to see these kinds of stories, and for so many reasons. WebView Jennifer Genoas profile on LinkedIn, the worlds largest professional community. amzn_assoc_tracking_id = "patientrising-20"; I think that is important and I want folks to understand that I perceived my symptoms as systemic (which obviously they weremy brainstem was compromised!) amzn_assoc_default_search_category = ""; WebJennifer Brea My Story In 2011, I became suddenly ill after an acute viral infection. 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.

After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. She developed the new and disturbing symptoms of stopping breathing (central sleep apnea) while she was completely awake, every time she laid on the back of her head. Comorbid Conditions, Differential Diagnoses, etc. She has an AB from Princeton University and was a PhD student at Harvard until a sudden illness left her bedridden. The result of toxin build-up manifests as CFS/ME symptoms. Hey Cort! Jeff will interview Mattie again in a couple of months. The sick raise their heads to be counted again. I would put anyone whos in a wheelchair as having a severe illness however. My mast cell activation syndrome (MCAS) has improved significantly, too. In March of 2018, she sought diagnosis of intracranial hypertension by getting a type of MRI with contrast to image her veins. Even if you dont have CCI/AAI, the search for it may help uncover other problems. After spending over $200K on more traditional treatments, mold avoidance did it for Joey. ME is buried more. Sinus surgery proved the cure for Diane. Amy, not knowing truly more about your situation, you did not have the correct type of imaging. Jen may be the only person some people feel they know with ME/CFS. Fighting when I initially became ill, I dont know if you saw my post above about having incurable Our recovery stories is bed with your suffering, but Huperzine a is well known in Chinese and medicine With their disease & other cases do get documented Issie, not knowing more! There are upright MRIs with flexion, extension, and rotational views, or supine CT scans with flexion, extension, and rotational views or 3Tesla supine MRIs. The intracranial pressure testing monitoring definitively confirmed her intracranial hypertension diagnosis. She attributes her mold sensitivity to MCAS and is still reactive to mold, but that seems to be improving. Given the extreme disability sometimes found in ME/CFS, its possible that two of the crucial brain organs involved in movement the motor cortex and the brainstem may have both taken a hit.