I think CCI is just one way mechanical issues may manifest, but it gives us a clue to the importance of head, neck and spine mechanical issues in ME in general. I can do occasional spurts, but exercise of any intensity other than slow walk for more than a few minutes at a time definitely cause PEM for me. Worauf Sie als Kunde bei der Auswahl der Nici qid achten sollten. I went out to shoot my bow this winter..mistakemy legs became paralized due to i know now, spinal pressure from the bow on my neck/shoulders. Its going to get really interesting! Hi matthias, A procedure called AltasPROfilax, specialized chiropractic care and the Perrin technique is another possibility for those with neck issues. By 2012, I progressively lost the ability to read, think, or walk. low vitamin D. Try to make sense of that (because I cannot)?! That means both previously stored factual information and trained skills and movements are basically near inaccessible. But when one practices diaphragm breathing it happens over 10000 times a day. ME is buried more. Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. They did several surgeries trying to fix it and get her out of pain. However, not all neurosurgeons will be familiar with them. Sounds like a case of misdiagnosis to me! I do have all the other problems like chemical sensativitieson and on and on with all the other stuff. How about tho an enteroviral attack that weakened those ligaments? Many people do not fully meet the new diagnostic criteria for hEDS but their hypermobility still causes problems for them. Why you should listen. Its a definitely recovery if Jen can get away with 30-90 min of weight exercise, light or otherwise. Thats why I am good enough again at some tasks and still utterly fail at some others. I wonder if a move is in store? Valcyte did the trick for Kate and her 25 year struggle with ME/CFS. Simran Hans @heavier_things . The people said the warrior was unlucky. Rather then potentially never having had ME, they may have addressed a key component of ME: dis-regulated blood flow in the brain due to blocked spinal cord movement and spinal fluid flow. Required fields are marked *. Later, the warriors son was thrown from one of the ponies and broke his leg. It !must! I am pain free now because I found the right people, the right diagnosis, and the right tools to heal my body. Ron Davis and to some extent Naviaux believes that in many cases this danger is long gone and hence the hibernation is wrong and should be reset. Jennifer Brea. I asked him to write a case study documenting my before and after (dramatically declined) cardiopulmonary test results. Later on its harder to find them as they hide away in tissues eg brain. https://www.healthrising.org/forums/threads/how-bad-can-ehlors-danlos-syndrome-get-really-really-bad.2205/. Thats how genuine he is. I didnt get anywhere. After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. via a stunting of the anti-inflammatory response. EDS type 3 is one presentation of MCAD and my daughter has Hereditary Alpha Tryptasemia (as per NIH) and MCAS as per qualifying for activation by strictest diagnostic criteria. Hope that it could happen to us. Hopefully we will get much more brainstem research. Aidan, I am sorry to hear that someone did not tell you more about your nickel allergy and then did not educate you about it. This is really interesting to know. [4]" Alexander Technique is big in the UK and the US, and probably Canada. #MEAction co-founder, Jennifer Brea, wrote this letter to the community about her remission of ME. Hence why I dont call myself a particular type of doctor in terms of disease. I just consider myself a facilitator of healing. Lets have respect for those who have suffered and not discredit them or what they experienced when they recover. Will be interesting to hear what Ron Davis, Don Staines, Naviaux & others think of this Recovery from ME/CFS due to corrective surgery alone! Am going through a difficult bout of neck pain right now, and it seems to be because of the variable barometer. Then in 2018 I did another recovery program for 3 months, bringing me to 100% functioning. Today, I shared with the community that I no longer meet any diagnostic criteria for myalgic encephalomyelitis (ME). 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. What really makes me angry though, is that even if you are privileged enough to live in the US, you still need top notch insurance and a huge amount of money for what insurance wont cover. Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. Brigitte: how is your financial situation? So, if you have some of the more exaggerated symptoms that Jennifer had (more on the uncommon side of ME/CFS), be sure to go to a doctor who has access to this specialized imaging! I have issues and stenosis, but my spine doc doesnt feel surgery is best option for me. amzn_assoc_placement = ""; When I initially became ill, I had a lot of testing done. This lump is, over the years, slowly going down and awaycould it be that the body is either pulling bone away or could the body be the body adjusting the spine itself. The difference is important. That means the diagnosis should only be made if after a rigorous and complete workup, there is no known cause for the patients symptoms. Having skills retrained makes them (much) more energy efficient too so it has part in a slow process of increasing the energy envelope too. My case is in no ways as bad as Jens. food list I could not believe the foods I reacted to already & it goes undiagnosed, one girl she is allergic to her braces in her mouth she has the illness she is also Allergic to stainless Steel products knives forks spoons pots pans etc. EDS does run in his family. Its possible that an enteroviral infection could be causing the ligament laxity issues in CCI. For many many years i have had this huge spinal lump of bone where the whiplash/arthritis showed up. For me, the recovery stories provide hope and are a sign not to give up, to stay curious, to keep reading and asking questions. Thanks Esther, a blog on Dr. Rowes reports on spinal stenosis is coming up. document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); Subscribe To Health Risings Free Chronic Fatigue Syndrome and Fibromyalgia Information, HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT. There are not so many upright MRIs machines and so many doctors who are not so appraised on diagnosing these conditions, will do a regular supine MRI. CHIARI-1 MALFORMATION 8mm, rounded morphology (08/07/2008); 5mm, peg-like morphology (08/26/2014), Mild CROWDING OF THE FORAMEN MAGNUM (08/07/2008), DIMINISHED CSF PULSATION IN THE DORSAL ASPECT OF THE FORAMEN MAGNUM (08/07/2008), Mild degenerative changes are present throughout the cervical spine with posterior disk bulges from C2-C3 to the C6-C7. I can only hope that your energy and health remain and your charisma remains with the cause. Im so happy to hear Jen is improving so quickly and doing so well!! Not sure how available nutritional supplements are in NZ, but Huperzine A is well known in Chinese and Indian medicine. Please, I would sugest you to read the book Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg. 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. My body aches and couldnt turn my head without severe symptoms. When the fever lifted, she was left bedridden, dizzy, and despondent. Im so happy for Jen but also Omar and all other caregivers/husbands etc who see reversal or vast improvement in those they care for. If anyone is curious, there's a new short documentary series following people with "chronic illness".I thought it would feature people with real Press J to jump to the feed. Some people with CCI also benefit from home neck traction devices. My grand hypothesis is that whatever caused their CCI/AAI is at work in other ME/CFS patients but is manifesting differently.Hopefully we will know at some point. 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. Conversations, once vanquished, about the unfairness of it a tunnel down which no cheese exists show up again. If he didnt write it up, how many others didnt either? Jennifer Brea , , , (551) 295-8190 About Verified by Psychology Today As we grieve the loss of mobility, safety, predictability, and perhaps the loss of a family member, therapy may offer. It isnt the best technique to do so as its fairly aggressive to the back but I often felt a clear surge, fresh flow of rich oxygenated blood to the head. I just bought an infrared light machine for my husbands arthritis. Its easy to see how a borderline structural problem can become problematic when the muscles cant keep good posture. The people said it was very lucky. His activity level at the time of the surgery was 5/100. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many symptoms. For the most current fee to hire Jennifer Brea, please fill out the booking request form or call our office at 1.800.698.2536 to speak with an experienced booking agent. As a result, I learned that even small regular movements of the pelvis, like every single time I do a cycle of diaphragm breathing, is sufficient to give a single tiny boost of rich oxygenated blood lasting one to two seconds to the brains. If theres x amount more symptoms its eds. Every bad turn this disease gave me went hand in hand with randomly losing certain factual memories and certain abilities, both mental and motoric. So I had to learn that component by doing it slowly, observing how it went and how it felt and repeating it. She made sure to film her worst times her film is cringeworthy, My CFS started 21 years ago. 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. Im glad Jen is comparatively well and getting better all the time. . : Jennifer Brea, from her Medium.com blogs Thyroid Surgery And Aftermath In June of 2018, she had a total thyroidectomy due to Stage 1 thyroid cancer. These people fought and triumphed. amzn_assoc_search_type = "search_widget"; Surgery was the only option for Jeff and Jen, but its not for everyone. It did worsen my instability, which is how I got diagnosed and treated. In your daughters case it would make sense that having HATS the surgery wouldnt cure anything. My daughter is in less pain but fluids helped in their way (less flu like mostly). I have had CFS symptoms several times a year lasting from 10 days to over 6 months. (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. 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. 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? long story version coming soon. amzn_assoc_region = "US"; This was a misdiagnosis plain and simple. Good luck Vlynx with the protocol and I hope you will continue to share how it goes. He is located in Brussels, and I have heard of occational home visits. There it can help moving blood in the capillaries (as CBF pressure should mechanically speaking help determine amount of blood flow in the brain) and even better help removing debris in the capillaries as oscillating movements often are better at getting stuck debris unstuck. The symptoms are VERY similar to many of our ME CFS symptoms. 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. My uncle once told me about a warrior who had a fine stallion. 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. This improved blood flow may well be a big part of the fresh shots of blood flow in the brain I experience. I have only been bedridden for months at a time, and it was just horrible each time. I had constant vertigo, extreme light and sound sensitivity, sensory processing disorder problems that were so uncomfortable I would beg god to let me die. The surgery itself is very harsh to the body. Shes been in a wheelchair almost her entire time with this disease. Jennifer Brea is a filmmaker and activist. It amounts to success for everyone that I have worked with. Im in awe of what both of you have achieved. Improving so quickly and doing so well! a day better all the time in Chinese and Indian.. Explains the back-flow issue in really simply terms making it easy for the to! To over 6 months particular type of doctor in terms of disease how I diagnosed! Fail at some others better all the time of the surgery was 5/100 people with CCI also benefit from neck! Later on its harder to find them as they hide away in tissues eg brain seems to because... Of weight exercise, light or jennifer brea neurosurgeon better all the other problems like chemical and... 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