Dr. Mark Shaw, a CFS patient, has listed theories about what causes CFS in an article of his. Here are those theories:
You can be infected through a variety of mediums. The Sympathetic and Parasympathetic nervous systems are compromised and damaged. The condition is then maintained and exacerbated by musculoskeletal imbalance in the thoracic region causing irritation of the surrounding nerve ganglia.
2/ a viral/ chemical exposure which entered your system causing brain and spinal cord lesions, simultaneously leaving the Sympathetic and Parasympathetic nervous systems in a state of chaos. The condition is then maintained and exacerbated by musculoskeletal imbalance in the thoracic region causing irritation of the surrounding nerve ganglia.
3/ a viral/ chemical exposure which entered your system causing a temporary brain injury to the area of the brain that deals with immune response.
Types 1 and 2 will cause the most prolonged type of Fibromyalgia/CFS, with 3 being mostly related to the type of post viral illness PVFS caused by EBV, in otherwise healthy patients this will usually dissipate over a period of 6 months to a year and should not necessarily result in or be classified as Fibromyalgia/CFS.
For source google "Dr. Mark Shaw" + "What Causes CFS"
Ah.........ME/CFS sure is the most myterious, most commplicated and very serious illness!!! There're so many theories out there...just wish they will all come together one day and prouduce one solid theory for everyone to understand the whole picture....., better sooner than later, Don't ya think? Chuckles.
The reason that ME/CFS is the most mysterious and complicated illness is that there is no one cause. There is no one cause of CFS because it is just a word to describe symptoms (that are very serious and debilitating) that are caused by a variety of real diseases/illnesses/viruses/chemical exposures.....Unfortunately the real search for the real cause ends once a person is slapped with the CFS label.
How many misdiagnosed cases does there have to be before someone will understand that there is a real cause of their illness? My misdiagnosis of CFS actually turned out to be Celiacs Disease; I didn't give up on myself when a doctor couldn't find anything terribly wrong in the "normal" tests they run and finally said "CFS". So this really hurt my chances of doctors helping me, but I did work and research on my own, and years later found my real problem - Celiacs; and even found a doctor willing to test it and provide the positive results. I am myself again. I recently posted an article on here about someone's diagnosis of CFS that actually turned out to be lymes disease. I have read article upon article of other misdiagnoses...The shame is that most will never get to find their true cause, and will never properly be treated or possibly cured.
I am sorry for anyone that has to go through the pain and suffering of CFS and without answers. But there are things that one can do on their own. Look into celiacs, food intollerances/delayed allergies, candida, benzene/chemical exposures, autoimmune diseases....find someone willing to help and/or test, or do what you can on your own; the first three I listed although this isnt an all-inclusive list, can be tested on your own.
PlateletGal, you have basically said this same thing; is it just that you are satisfied with a word to describe your symptoms so you know what you are feeling is real, and so others won't think you are just crazy? That wasn't enough for me. Good luck to you all and I hope you find the cause of your suffering.
"PlateletGal, you have basically said this same thing; is it just that you are satisfied with a word to describe your symptoms so you know what you are feeling is real, and so others won't think you are just crazy? "
I have Chronic Fatigue Immune Dysfunction Syndrome. There is a lab test that can make the diagnosis (Red Labs USA) and we've discussed this already. Just because your diagnosis turned out to be Celiac disease, doesn't mean that everyone who has CFS was misdiagnosed. btw... I thought your illness was due to yeast ? Anyway, the CDC recently studied hundreds of CFS patients and yes, there were some people who were misdiagnosed. However, the majority of them indeed had CFS. The CDC has done over 4,000 studies on CFS so far and the suspected culprit is pathogens.
I already told you that I have allergies, a positive ANA titer and my EBV titer is off the charts. And the good news is... the treatment I'm currently doing (Marshall Protocol) is getting me well. And about 6 months after I started the MP, I was able to tolerate gluten again. Perhaps the real cause for Celiac disease is pathogens as well ? ; ^ )
No my illness wasn't due to Yeast, it is my current girlfriend that was misdiagnosed. She was actually being diagnosed as having Fibro, but is also now cured from anti-candida treatment. Doesn't even take any sort of prescription anymore.
So the two common mis-diagnoses that I have personal experience are mine and hers. But I have read many other cases and talked to many other people where it actually turned out to be celiacs or yeast-related. That is the reason I am here, because I know what we both went through and the years of not knowing and getting no real relief. And now to not take any medications/prescriptions and be able to live normal lives and feel great. I want others to realize that sometimes a doctor just doesn't know and that they too may have fallen fate to what me and her and numerous others did.
Actually on the Celiac Foundation Website it lists Fibro and CFS as being common diagnoses in Celiacs, so I guess it isn't just me that was misdiagnosed. If pathogens were the real cause of Celiacs, then eliminating gluten sure did kill all those pathogens because I am 100% better, I am me again.
I wish this post were under a different title because I fear that not enough people would read this being under "benzene". I really do want people to know that it is commonly misdiagnosed, and that potentially they can be successfully treated/cured if they can find the real cause of their symptoms. I guess the alternative is to just wait or try some magical protocol that people go on for over 5 years and get no relief.
Instead of exploring options and other ideas, it seems like CFS/Fibro patients are reluctant to even open their mind because they are just satisfied to finally have an answer whether it be right or wrong, and whether they get better or not. Seems like you even get mad at the hint of the idea that you could be back to unknown status again and instead cling onto this imaginary disease that no one knows what causes it, how it is treated.....
First, I'm very happy for you that you're able to return your normal life.
I truly appreciate your intention to encourage people to help themselves and 'when in doubt, check all aspects out".,,,,.
I believe, from my experience in reading research news for 15 yrs on ME/CFS, doctor shopping, tests after tests, and -0- carb diet, etc. etc....There're lots complicated illness out there with overlapping symptoms to each other, which makes an accurate diagnosis difficult. Remember, it took Montel Williams 10yrs to get to the bottom of his problem, MS. ....and he had more resource than most of us do.
I believe a healthy 'nature' food diet helps to improve our condition in general. To be realistic though, it is NOT a healthy financial practice that most people can afford.Agree?
,I've been with ME/CFS for 15 yrs,and I can assure you that all my fellow patients/friends were NOT satisfied with an 'imaginery disease' and being ridiculed at, discriminated against , To people who are suffereing not by choice or because of our ignorance, your statement seems a bit unfair. Just my two cents which does not mean to offand.
. Stay well.
I don't mean to offend anyone or even hint that their affliction isn't real, because I know it is. I have read article after article and story after story of people misdiagnosed CFS/Fibro, who were lucky enough to find the true cause of their symptoms; and most important I have experienced it personally. So I only feel that I should let others know that there may be another answer out there, and that needless suffering may not be the only option.
It is very upsetting to me the way my situation was handled and with the medical community in general, so I am sorry if I come off too harsh about CFS/Fibro. But I know there are others like me that were misdiagnosed and they may never find the real cause because most stop looking once they have an "answer" and doctors for sure stop being helpful once CFS is diagnosed. I don't know if there is such a thing as CFS, but I do know for a fact that it is misdiagnosed too often; its just my opinion that CFS is only a doctor saying we have done all the normal tests and there is nothing that blantantly demonstrates a cause for your symptoms and your symptoms fit basically an all-inclusive list of symptoms for CFS so that is what I will say you have.
In reading all the posts I can just feel the frustration in the air. There are many of us that have been diagnosed with CFS, Fibro, Lupus whatever and yes I think it would be comofrting to have a solid diagnosis. Some of us do have solid diagnosis and some of us choose to continue to search and not accept what our doctors have told us because ultimatly we know our own bodies better than anyone. I have been dx'd with Fibro and Lupus and I have been fighting both diagnosis for almost a year now. For one because I don't want to accept that I have a chronic illness, I want to get well and go back to work but also because there are so many factors when it comes to autoimmune that make doctors scratch their heads and just slap a name to it and put you on medication. If you talk to some people they may just say I am in denial. But if that's the case my "denial" has pushed me to have a colonoscopy, endoscopy and many other tests done that would not have been done had I just accepted the first diagnosis. So I guess what I am trying to say is all of our stories are different and yet very much the same. I agree with Sonnerman that we must be our own advocates in order to get to the bottom of what is going on with our bodies rather than be happy to have a diagnossis only to never really be treated for the correct illness. I also agree with Kit that this is a place to go and chat, vent, cry, ask questions and support each other (maybe you didn't say all that Kit but I know you believe that as I do) and harshness is not needed here, support is. Let's try to support each other to get the best medical attention we can and remember that what works for one does not necessarily work for everyone either. We are all on our own journeys but hopefully we will all end up at good health and a quality life.
hi. comment about soonerman's post. i was diagnosed with CFS by my GP. my GP thought i had giardia and when i tested negative for every bacteria on this planet.....get this....she told me i was LYING and had gone to mexico. thanks for the help- doc. she told me i was depressed, that it was genetic, and handed me three prescriptions for my 'depression'. i threw them away. i actually had candida overgrowth. i went to an integrative med doc for the tests. lab test were off the chart. i also had a b12 deficiency caused by the candida. i went on a very strict candida diet, took anti-fungals for about 3 months, flora, and b12 injections weekly. i will have to say that 6 months before i was diagnosed with CFS i had encephalitis. also my ebv titer was off the chart & i never remember having mono. can't explain that one. i researched, pushed, challenged, questioned- i wouldn't want me as a patient. but, just keep pushing. you'll figure it out. you'll come back from this stronger and better. also, i take two supplements ImmunotiX3-6 & IGG2000DF by Xymogen to support my immune system. kimpton
The treatment I'm currently on right now addresses all different types of pathogens.... viruses, parasites, mycoplasmas and even yeast.
One thing about CFS patients (who are diagnosed properly) is that they fail the heart monitor test. You know cardiomyopathy is caused by a virus.... well CFS patients have diastolic cardiomyopathy. (except we don't die from it). Other patients have systolic cardiomyopathy and it is deadly. So what you do think causes this..... viral infection or yeast ?
After having mono, it is my opinion that the viral infection I had caused the immune dysfunction and left me open and susceptible to other illnesses and pathogens and yes... that includes yeast. In fact, only 3 months afer I had mono... I had valley fever ! (fungus infection)
Some other thoughts I've had on the topic. What happens in CFS is researchers have discovered our viral channels remain open as expressed by RNase L weights long after the viruses have effectively been eliminated. This means that our body still thinks it is fighting an infection(s) long after the infection is gone and then is consumes our resources and destroys otherwise healthy cells and contributes to the overall feeling of exhaustion. So it makes sense that many CFS patients have autoimmune problems, myself included. I know this to be true because when you have CFS and your condition is the worst it is ever been, you no longer get cold symptoms after you are exposed and get a virus. Instead, your CFS symptoms get worse. In addition, I remember years after I had mono, I was taking allergy medications that didn't help ANY of my symptoms. But since I had cold and virus symptoms, I went out and purchased a cold remedy at a Chinese health store. The cold medication had helped my symptoms and even gave me energy ! This told me that I was dealing with a virus and now it all makes perfect sense to me.
Yes, there are many people who are misdiagnosed in this country every single day. But there are patients who have CFS who fit the clinical criteria to a "T" and who have heart problems and other symptoms that aren't seen in any other illnesses.
As I've been reading through a few posts, trying to figure out where to go, I found this post. Interesting.
Without going into ALL the great details, I wanted to introduce myself and ask if you could refer me to a particular part of the forums.
I'm 36 now; d/x began at age 20 with depression and fibromyalgia and have continued as I've gotten worse, better, or developed different sypmtoms. Although the diagnosis are believable and provable (is that a word?), I hold out for an explanation that ties all these problems together or explains a common origin. I am convinced that my health problems are connected and not random.
Atypical bipolar with ultra rapid cycling, hypothryroid, Plantar Faschitis, Bursitis, Narcolepsy, Neuropathy, PCOS, Metabolic Syndrome, HyperInsulinanemia, Ammenorrea, Insulin Resistance, Infertility
Other problems since young age:
IBS, Migraines, Severe Allergies, Bronchitis, Pnuemonia, TMJ/teeth grinding, minor mitrovalveprolapse, Anxiety (Hell yah, check out the list of **** I am dealing with!), OCD, Edema (Current unexplained problem causing great pain), and more!
I've been to numerous doctors, the Mayo Clinic, and several churches. I'll try anything.
I'm very interested in the knowledge that you've collected regarding CFS, Fibro, autoimmune.....especially when in common with symptoms/diseases/syndromes mentioned above.
One other important consideration is that I had Mono at 16-17 yrs. I've researched my butt off and can not find POST mono difficulties/problems/etc.
I'm looking forward to having a group to discuss with. It's been a long (and many times, lonely and frustrating) 15 years of poor health and no answers. I've read the desperation in the forums and I know that in my own life.
In case I forget to check back soon- and it's likely to happen- please email any posts if you are comfortable. My personal email is: ***@****.
Question for you. When you had mono, is that when you started having health problems ?