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She needs help asap. Only gets worse. She'll need your help!

Yeah, unfortuneatly its the gift that keeps on giving

Better?

That sounds like Lyme disease.

Priscilla, your comment puzzles me because I hear this alot, where someone tells me that they have lupus AND fibromyalgia (or EBV or CFS). Conditions like fibromyalgia and CFS are diagnoses-of-exclusion, which means the symptoms can't be explained by some other illness or a medication. In fact, it's hard for me to imagine what symptoms you'd have that you'd attribute to fibromyalgia that couldn't be explained by lupus? I'm guessing that you were originally diagnosed with fibromyalgia or CFS, but were ultimately then found to have lupus - and once you were diagnosed with lupus, those other diagnoses really wouldn't be relevant anymore.

It's worth checking-out, though testing is unreliable and controversial. The problem with Lyme is that the symptom list is very, very broad, such that most people with a chronic illness could convince themselves that they have this. Don't get me wrong; I'm sure there are many folks walking-around with Lyme who have a diagnosis of fibromyalgia or CFS - however, I find that there are now loads of folks convinced they have Lyme, seeking treatment - some surely have Lyme, and some don't - but it's a "preferable' diagnosis in some ways, because (presumably) there's some treatment for it (and an understanding of it, as a bacterial illness), whereas fibromyalgia and CFS are "black holes." I was treated for Lyme for a year (without much success) and my doctor told me that he'd regularly see folks with ALS or MS who were hoping they had Lyme instead. Happily, a few did, but sadly, many didn't, and he was only able to confirm their original diagnosis.

Michael Caprarella Thanks-since I wrote that I had a eeg and nerve conduction= polyneuropathy, as expected. I also had a recent MRI- mildly extensive foci of white matter more then expected for age, differential of eschemic, chronic gliosis, demyelination or encephalitis from lyme- the free clinic I go to said they could no longer do anyh=thing for me and have not given me a diagnosis, that I would need to seek treatment elsewhere. I have no financial ability nor physical ability and am quickly running out of options- Oh well- Thanks for responding.

Almost certainly Lyme disease and its coinfections.

I can’t hear any sound?!

Same here, no sound.

No sound!?

+Schwingfeld Forschung it can be cured? It cured that way?

+Frank Leben mit CFS, oder CFS Patienten,was ist zu tun ? 1. ) Den Verursacher, hoch energetisch-geladener-Sonnenstaub in der Lunge und am Körper löschen. 2.) Die Körper-eigene-Steuerung ( Vegetativum )in die Mittellage bringen. 3.) Das Lebensenergie-Potenzial wieder verfügbar machen. 4.) Den Körper mit Elektronen sättigen,damit Nerven wieder leitfähig werden. Am eigenen Körper empfinden, dass es der richtige Weg ist. über 30 Jahre Forschungsarbeit-enormer Kostenaufwand,hat uns nun zum Erfolg geführt. Eine Lichtkompressor - Untersuchung zeigt Ihnen Ihre Sonnenstaub Belastung und den Verursacher Ihrer CFS Erkrankung, Kosten € 125.- GEHEILTE cfs PATIENTEN , WERDEN IN ZUKUNFT JEDEN TAG DIE SONNENSTAUB-INFO-PLATTFORM BEOBACHTEN. NIE WIEDER cfs ! ! !

hallo, ich spreche kein Deutsch. Behandlung chronischer Erschöpfungssyndrom zu heilen, die basierend auf? Ich konnte auf meine Mail schreiben? in der verständlichste Weise möglich, ist es schwer, die Sprache zu verstehen. Überprüfen Sie bitte meine mail: dinfranco@yahoo.com.ar

I do not know about that. Sounds like you're belittling the thing a bit. It is a full blown disease with multiple symptoms, like herpes and other viral diseases.

+Dana Preston You're onto something there Dana. I've been doing some investigations and it all points to Yes..Agenda 21!!! I got this disease around 1984, in Lake Tahoe, and it's progressed, waxing and waning. I'm real pleased that I found your comments, thank you. I've seen many video's on Agenda 21, and also googled Tom DeWeese and they're all excellent !

Garyt Bradbury - Smart! Please spread the word. ALL must know so they can DEFEND themselves against Gov't intrusion.

+Schwingfeld Forschung Tell me how, please! I read4 books, but still do not feel good.

Gosh, this is a refreshing comment! Fibromyalgia and chronic fatigue syndrome are surely different illnesses - it's always bothered me when they're grouped together. Also, while I agree that chronic fatigue syndrome isn't an ideal name (mostly because it trivializes the illness), "myalgic encephalomyelitis" isn't any better - frankly, I think people favour it because it sounds serious, but you can't simply use "any" serious-sounding name and apply it to your condition. Currently, there's no real evidence of "enceophalomyelitis," which is "inflammation of the brain and spinal cord." People may *feel* like this is what they're experiencing, and I'm not saying (at all) that this isn't a serious illness - it's just that we don't yet know what's going-on with the illness. In my opinion, it might be better-off being named after one of the folks that first recognized it, calling it (for example) "Cheney's Syndrome," as with diseases such as Crohn's Disease, Hashimoto's Thyroiditis or Graves' Disease.

J Rae I've had this torturous disease since 2004. I've been home bound and bedridden going on 8 years now. When I first saw this comment saying there is no evidence of brain or spinal cord swelling I thought perhaps it was an old comment very old comment actually. There has been evidence of brain and spinal cord swelling since I believe the 1930s through the original doctor who discovered this illness or I should say discovered Medical abnormalities his name was dr. Ramsey. I as well as many other people in my support groups I belong to have evidence of swelling in the brain the spinal cord or both. So as a physician I'm not sure why you haven't seen this evidence. I believe Stanford did a study of this but there are few studies done which is why the name was put there in the first place . Many of us also have cysts in our brain as well as decreased white matter and gray matter for our age groups. Some other biological findings are low blood volume white blood cells that are either way too high or way too low decreased red blood count very low NK cell function mitochondrial dysfunction or failure irregular EMG tests irregular EEG . Mine personally shows several different seizure activities and I do suffer from daily seizures muscle wasting unexplainable weight loss irretractable nausea and vomiting the post external malaise for me can come just from sitting up or walking to use the bathroom. The pain I have is Extreme from head to toe it literally feels like my bones are being crushed I also have the muscle pains which were explained to me was because of the increased lactic acid CFS me suffers have. That is one of the reasons that we were unable to exercise and exercise can make us worse especially if we go into aerobic stage and the lactic acid increases that's why many people including myself or made worse because we were told to exercise. I also have light sound and touch sensitivity or just the sheets brushing on me can be excruciating. The few times I am able to make a phone call for example or walk for my bedroom to the living room and sit up for a few I'll have to come lay flat as soon as possible because it feels like my brain literally is on fire. I also also have Painful neuropathy as well as many other neurological symptoms I can no longer write I tend to write letters backwards entire words backwards or just can't do it. Same with speaking I know what I want to write or what I want to say my body just doesn't get the connection. I'm using the talk to text to write this hopefully it makes sense and please don't take anything I'm saying negatively there are so many people including Physicians that don't know about all of the information that is out there. And I can understand in some ways you are not taught about this disease in medical school who usually so overbooked I can understand time to research isn't always there. I have been the one to supply my doctor with information from when I first started seeing her in 2010 and she was willing to listen and try to help me. Of course the information had to be legitimate for example from PubMed the CDC the NIH. Sadly since August her treatment of me has changed dramatically she actually told me well you're not improving and you're not bringing me information the way you used to. she's also decided to stop treaty right pain with this opiate brouhaha that shouldn't even be applied two people such as myself have legitimate even proven pain. I have no problem being under contract submitting to random urine tests which always come out clean. Still I told her I don't really care if it's opiates that are being used to treat my pain I just need my pain to be bearable. She agreed that we would try something else then without warning she simply stopped treating my pain at all. I can't tell you how much worse this has made my condition. I can no longer do my physical therapy or even bathe. I don't don't understand why I'm being criminalized especially when we first started discussing pain treatment and I had God down to half the dose she had started me at. also the information I provided her CFS m e experts such as dr. Goldstein suggested medications that were not even opiates ketamine was one suggestion that had been studied it showed to be the most beneficial for my disease. so how fair is that I being treated less than human because of accidental overdoses that percentage-wise chronic pain patients are the lowest at risk. not to mention all the other health factors that come with severe untreated pain heart attack stroke organ failure to name a few. It's especially worrisome not only because I have to deal with the hell of this excruciating pain that was under control but I've already had several Strokes before I pain was treated. you and others may think I'm sounding dramatic please visit the hummingbird Foundation website. It answers questions about this disease from every aspect. The patient the caregiver the physician Etc and also has the supporting data. it's sad that we live in a world where an animal isn't allowed to suffer like this but human beings are treated so cruelly and even judged unfairly by medical professionals who are not aware of this disease and how severe the pain and many other symptoms are and can be . It's avery disheartening thing to go through I've invested so much time and energy to provide her with the information on tests and treatments that we can try. Unfortunately I have gotten worse probably the last 4 years through no fault of my own I have a disease which I can't control. She's refused to try the majority of treatments I've given her evidence on even just a saline IV. The only thing she has agreed to is B12 shots there are several protocols the word she decided on what's 10 CC everyday for 6 months see if there's any Improvement I go from there. The only problem is my insurance doesn't cover the the treatments. I was able to get a few months then I lost my disability income because I have no help I was unable to fill out the paperwork. But I gave my mom power of attorney so she could try to get everything straightened out and done but apparently Social Security Administration told her it requires that I personally go. the worst part of that is I don't 100% believe that she even tried. either way I don't understand this rule my doctor has already declared be home & bed bound so you think there would be a social worker that could come to me someone I could talk to on the phone something in place for people like me who are totally and bed bound to continue back getting the benefits we are the only a title to the only qualified for but desperately need. I'm now behind on my mortgage there are no programs in place to help someone like me. So many with CFS / m e fall through the cracks not only with our Medical Care but with benefits such as disability and home care possibly palliative care. I'm one of so many that is too sick to do things that are required and there's no one to help me and there's nothing set up in the system where I live that offer us help. This disease truly feels like you're dying every minute of every day. I still talk to myself today will be better tomorrow will be better whatever I have to do to keep fighting. even if I have a hopeless day or moment I pull myself back up fight. but I can't say I don't fear that one day someone will come find my lifeless body being that I often don't have anyone come to check on me for months. it's actually pretty scary sometimes. Our medical system should it be set up that way. there is a social worker at my doctor's office now so I expressed all my concerns to her it was told she didn't do any of that and couldn't help me. I'm still trying to clarify exactly what she can do because it was my doctor who told me she could help me. my apologies if this comment is all over the place if I repeat myself it for possibly many grammar errors. talk to text it's all I canas someone do. I beg of you with this disease if you treat it please listen to your patients. there are so many of us that can have many similarities but also some differences. but at the end of the day we're looking to our doctor for help we need you. I probably provided my doctor with enough information to fill a 3 ring binder every 6 months to a year. I provided her with many treatment options one being low dose Naltrexone which unfortunately I had a horrible reaction to but another CFS patient of hers who was not as severe as me had great results. This treatment protocol is available for all to see there have been trials and it not only helps those with CFS m e it also has helped people with MS ALS Cancer And more.Obviously thePatient cannot be on opiate pain treatment Or drink alcohol being that naltroxine is an antagonist for both. And even though a treatment dose can Start as low as .5 mcgs because our metabolisms don't work right along with many of us having drug even supplement sensitivity even that small of a dose could cause severe withdrawal symptoms. There is an astronomical amount of legitimate information available out there on this disease some's been available for centuries you've just gotta be willing to put in the work to find it. If I was able to Dr's truly interested in helping us can too. Many aren't or don't take studies seriously if they're not that big. But you gotta keep in mind most of these studies have been done with little to no government funding. The cdc did update their info in July (I feel due to the increase in deaths ruled caused by ME at autopsy there were 75 abnormalities in spinal fluid as well as the increase in children getting it) so hopefully that'll help with funding and help for the millions that suffer every minute of our lives. Please before discredit the name ME do the research to find where it came from i assure you it's more then wanting a more serious sounding name. Sadly the government spent a million dollars to change the name to seid or systematic exercise intolerance disease. Which 1 funds would've been better spent on research and 2 like CFS insinuates we're just tired SEID insinuates we just can't exercise. I personally think it should be called Ramseys disease seeing as he was the first documened to discover this and find physical proof. But it's never even brought up so I believe ME is fitting for those that have all the symptoms required for the diagnosis. Thank you for your interest in this disease there are so few Drs that seem to want anything to do with it. I can only pray this disease will become a part of future medical school curriculum. Because sadly Dr's who don't know about it even when given the information can be quite cruel. And that's not OK especially when so many of us are at the stage where our symptoms are as severe as a patient with AIDS, heart failure, renal failure to name a few Dr's FamiliarWith the disease have compared it to. And there are also Some of us Who's conditions become so severe we do develop something like heart failure.

I have rarely heard of anyone recovering unless they found out it was Lyme. Any decent doctor will check for that first. Maybe they are just miracles that happen for reasons we don't understand that people get well.

+ Cathy Anderson Even lyme isn't the be-all-end-all. I met a woman a couple of years ago who has worked as a health care provider (HCP) with, as she put it, all the big cutting edge lyme doctors in our metro area. At least one of those is well known internationally. In a nutshell, she said that most of the patients do get better with the lyme treatment of antibiotics etc -- however, the dirty little secret that no one talks about (her words) is that some patients just tank and never get better. I've had CFS for 25 years (tho only just got the offical MD-sanctioned diagnosis about 18 months ago). I saw a lyme specialist about 5 years ago and did treatment for 1.5 years following which I have become progressively worse until now I'm one of the 25% who are 'homebound or bedbound'. Hearing what this HCP had to say only confirmed what I had already been thinking, that the lyme treatment ended up making me worse. (And if anyone wants to start in on the whole 'herxing' thing, please save it.) I was at least able, barely, to work before. I wouldn't discourage anyone from exploring the lyme option, because I do think it's likely that a lot of CFS could be lyme-related. However, I've also watched and participated in a lot of the ongoing CFS diagnosis parade over the last 25 years. From this, I say with great certainly that you can find experts with lab tests and other science to back up about any theory you might care to come up about CFS. I do not believe there is a blanket diagnosis for this thing, although maybe there will be some day. I think it's more likely there are multiple and/or overlapping disease processes and environmental factors going on here -- and I know directly at least one fabulous long-practicing MD who offers the same theory. Antibiotics and antivirals are not hazard free, and there's science to back up that claim too.

I think you're right - those who are healthy have difficulty understanding chronic illness, just as you and I probably would have before we had a chronic illness ourselves! I do think there are a few doctors out there who aren't frustrating (I hope I'm one of them!) - remember that doctors can be patients, too. Despite working as a physician, I too find if frustrating to deal with the medical system - I believe this illness will only receive legitimacy once a defined marked is identified that can "prove" someone has the illness. Lyme Disease suffers from a similar problem, largely because of controversy regarding diagnostic testing. It's a sad state of affairs when patients have to "prove" they're sick for their suffering to be legitimized.

I was 27. Never built my family like I dreamed. Never did so much. Just suffer and list all my friends!

I ingested an actual piece of Mercury when I was a child, as in the liquid metal itself,and was Mercury Poisoned. I grew into adulthood and have symptoms of CFS now.

+Ann Garton www.reddit.com/r/cfs/ very helpful CFS community