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DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int the psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455 Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607 Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR. Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018 Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS Article synopsis: https://bit.ly/2GhF5FK Research Article: https://insight.jci.org/articles/view/98410 Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php Genomics and Health Impact Blog - a discussion about gene testing from the CDC There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/ 1st lab test to detect concussion approved by FDA For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003
So I went to see a CFS specialist a few weeks ago and here's the story. My PCP thinks early antigen EBV results suggest a chronic infection - he recommend I go see this CFS Dr. She looked at my past EBV and HHV6 results and also thought this may be the cause of my problems. We re-tested and the EBV and HHV6 levels still show as high and active (or reactivated?). She recommended anti-virals for at least 6 months. She also recommended low dose naltrexone, IV saline and wants me to get a Spect scan done. She said the neuropathy could be from the EBV - because this is a member of the herpes family which are known to attack nerves. She said I'm going to be harder to treat because I've been sick for so long, but said she has had success with antivirals in other CFS patients. I am skeptical. 20% of normal people can show these antibodies - so is this a real finding or are we grasping at straws? I cannot afford a bad reaction to medication or experience any kind of setback, but am desperate enough to possibly try this. I don't think I'm going to do the LDN - there is no proof there's anything wrong with my immune system. Will probably do the Spect Scan. I will run this by CFS people too and see what they say, but wanted to check here first. Has anyone here been down this EBV/antiviral road? If not and you still have an opinion, please share. Thanks.
So, i keep reading each one...... i read ncs, and it sounds like me. I read dys and it sounds like me. I read mcad and it sounds like me. I read cfs and it sounds like me. BUT THEY ALL HAVE MOSTLY THE SAME SYMPTOMS!!!! Agh!!! Is there any read difference between these??? in mechanisms? in symptoms that could be told apart from the other??? thanks tennille
I was just reading the other day on a post regarding hormones, etc...... and i read something that issie had written about aspartame and how it works in the body/brain and then i was reading how it (phenylalanine) is a precursor for tyrosine, the monoamine signaling molecules dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline). And also L-Phenylalanine is biologically converted into L-tyrosine, another one of the DNA-encoded amino acids. L-tyrosine in turn is converted into L-DOPA, which is further converted into dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline). The latter three are known as the catecholamines. (ok, i copied all that from wikipedia)...... cuz my poor give out brain can't make sense of what this does. What's going on is: for the past 4 nights i have eaten gluten free yogurt (1/2 of a small container a night before i go to bed) and it has aspartame in it. Each morning i have woke up to a functional morning...... and a fairly functional day. A seriously significant improvement that i haven't felt in about 2 years. Of course, im also implementing the gluten free diet as best as i can..... and i noticed that 3 of those nights, that i slept hard, without waking up, a full night's sleep and well and actually woke up feeling like i had rested and i haven't felt that in probably 9 years, ever. Keep in mind, I started on my period yesterday, so the 2 days before that and up until now would have been my most severe days of the month, as most of us are most severe the days before and during our periods. So, even with going into my monthly cycle and during it, all the sudden it's a very, very noticable change...... not a cure all, but it's just so obvious something is different. I have thought this over and over the past few days since i read that post first about the aspartame, and then i was eating that yogurt and just happened to notice the next mornings were different, far different than id felt in a long time..... then i put 2 and 2 together and wandering if the aspartame could be contributing to this. But i can't seem to eat a whole container, if i eat the whole container, i feel some of the negative side effects, but a half one i seem to tolerate for the time being...... BUT is it this? that is making the difference??? I haven't changed any meds, other than going from generic zantac to the brand for a week, for my mcad. I may be jumping to conclusions..... or it could be the brand named zantac? Or it could be a few days of remission..... But this is such an evident difference that i have never felt in a good 2-3 years, possibly more. I've walked around for days (get that??? i've walked more than i have in forever! but tire very very quickly still).... but have walked around wandering what it is that could be making this much of a difference and i cant figure it out. I have had 4 mornings that i could get out of bed and go. Of course, i run down fast and all, but i can tell something is different..... even the digestive issues have lightened up considerably... (could be due to the probiotics that is in the yogurt as well). Is anyone's brain working today, cuz i still can't seem to make sense of it, or even if this is possible? Any thoughts, suggestions, ideas on the aspartame and how it affects the brain, in lamens terms? thanks!! tennille