hi, please don't be upset with what i have to say.
i was dx'd with cfs for a year. cfs has never been proven to exist. rather it is what doctors tell you you have when they don't have a diagnostic marker to tell you otherwise. it is sheer incompetence. as well there are many charlatans selling lots of unregulated supplements and making billions, read billions, of dollars of the name of cfs.
please do not accept cfs as an answer.
in my case i was finally properly diagnosed with lyme disease, which is very hard to diagnose and treat itself. this is the first thing i would check out. if not exhaust all possibilities.
this is your life don't let some man or woman in a white lab coat label you because they have a degree and you don't. take charge of your life.
cfs is not real, rather it is an amalgamation of symptoms of which anyone can be described. in the same vein candida rarely exists (you can have a dysbiosis test to check yeast levels in your stool) and has never been proven to be endemic to the immune system.
take care and be well. i hope for the best for everyone here.
.cfs is not real, rather it is an amalgamation of symptoms of which anyone can be described. .
CFIDS does, indeed, exist! This kind of statement only perpetuates false information that does nothing to help the great many people who suffer from this illness. CFIDS and Lyme disease are not the same. Lyme disease can be detected through tests, CFIDS cannot. I did research years ago on Lyme disease and unless that information has changed, those symptoms differ from that of CFIDS.
Please do some research and also go to the CFIDS foundation home page for accurate information about the specifc symptoms necessary for diagnosis. Unfortunately, many people feel as you because they simply do not know the facts, This can only lead to yet fewer supportive friends and family of those who have this illness, and support is very much needed.
CFIDS is NOT about just being tired, which can describe anyone! Having had this for 12 years, I can tell you that it is a very specific immune disorder that has certainly changed the quality of my life drastically. Granted, there is still little or conflicting information as to the CAUSE of CFIDS (not so for Lyme disease), but this is true for many disorders and is no reason to dismiss it as a non-existant illness.
There are lots of people diagnosed with CFS that do have other conditions.
like MS or Lyme disease but there are millions of people out there like myself who are given the label CFS because there is no evidence of any other condition. CFS is a general name for people who are ill and who may have suffered a virus in the past but doctor's can't find another disease process.
I have had bad viruses in the past Hepatitus A and Glandular Fever (Mono) twice and 10 years down the line something is still attacking my system. I am still being investigated for MS/Lyme/Lupus etc but it would have shown up as damage in my brain or in my blood by now. I have been tested for every disease you can think of.
The only evidence I have that I am not imagining it, is that my blood tests show inflammation in the body, high protein levels and antibodies fighting something. After them exploring every other reason for my body to be fighting something they really can't find the 2nd piece of information which points them to a particular disease/condition and they have really tried.
The viruses I had in the past are still busy and active ten years down the line continuing there work and invading my body causing a whole range of problems. One day they may be able to identify exactly what virus or bacteria is causing it (I have had epstein barr virus in the past)
but because they can't anwser at the moment they say it is a illness which is the result of a virus infection: so they call that CFS.
So I understand why you would think it doesn't exist but what do you say people like myself are suffering from if every other alternative disease/condition has been exhausted?
My CFS was caused by a dental infection.For 11 stinking years i went to doctors and they gave me NO help at all.I just happend to change dentist and this new one found the bacteria infection in the first visit.He fixed it and 3 months later i no longer had CFS,FMS,IBD.
I am so very happy for those who have found and were able to be treated for what started their Fibrolmyalgia and Chronic fatigue. Your examlples are very good examples as to why we should always be diligent and not take any new or old symptoms for granted. Unfortunately this does not apply to all of us. Just this last year I found out what was at the root of my CFS/FMS. I have had hepatitis C since 1967. I have less than 40-50% chance of remission with treatment, and the relapse rate is pretty high. It's not unusual for a year's treatment, whether successful or unsuccessful can leave the person in worse shape physically than when they started treatment. There are far too many people with Lyme disease who either cannot clear it successfully or too much damage has been done. Then there are auto-immune diseases, some of which will go into remission for varying amounts of time. These plus a long list of other chronic or undiagnosed diseases can to lead to CFS and/or Fibromyalgia in quite a few people. Sometimes certain treatments or improved nutrition will help. However the body is a very complicated mechanism and we are all different. My symptoms are very real, and they are not going away in the very near future even with knowing the root cause. Some things cannot be successfully treated. However, some can. Unfortunately we are not all fortunate enough to have access to competent medical professionals who are able to catch many of the not so obvious problems. For these reasons we are responsible to keep ourselves up on the latest research, etc. as much as possible.
its actually just a symptom of many many problems, which I think is what you are trying to say, and yes I do agree, just because someone has a degree doesnt make them right. I told a doctor that my histamine and folic acid levels are high and it meant nothing at all to him, but those test results mean that I have a condition called histadelia. Doctors dont always know what they are doing, hence the name practicioners. The same goes for ADD/ADHD, its just a symtoms related to ten to hundreds of problems. And yes, now days with all the information that is on the internet, you could be better off doing the research yourself if you have the time. Its what I did, and I diagnosed myself with histadelia, then found out that my house carpet has brominated flame retardants which caused me hypothyroidism and behavioral abnormalities.
hi, please don't be upset with what i have to say.
i was dx'd with cfs for a year. cfs has never been proven to exist. rather it is what doctors tell you you have when they don't have a diagnostic marker to tell you otherwise. it is sheer incompetence. as well there are many charlatans selling lots of unregulated supplements and making billions, read billions, of dollars in the name of cfs.
please do not accept cfs as an answer.
in my case i was finally properly diagnosed with lyme disease, which is very hard to diagnose and treat itself. this is the first thing i would check out. if not exhaust all possibilities.
this is your life don't let some man or woman in a white lab coat label you because they have a degree and you don't. take charge of your life.
cfs is not real, rather it is an amalgamation of symptoms of which anyone can be described. in the same vein candida rarely exists (you can have a dysbiosis test to check yeast levels in your stool) and has never been proven to be endemic to the immune system.
take care and be well. i hope for the best for everyone here.
I see you are back singing the same tune. I find your blanket statements rather disturbing. Maybe CFIDS doesn't exist for you, but it certainly does for thousands of others. Many of us with CFIDS have been tested for Lyme disease. It was, in fact, the first thing I was tested for 11 years ago. Candida and Lyme disease may be factors for some, but certainly not carte blanche, as you suggest!
As I have stated before in response to your post, to say CFIDS doesn't exist, and without any documentation for making such a statement is, I believe, irresponsible. CFIDS is, indeed, REAL. Just ask the many people who suffer the symptoms daily! Although there sometimes is some cross over, many of these symptoms do not fit the Candida or Lyme disease profile. I have researched them both. Go to the CFIDS Foundation home page for accurate information about this disease.
hello,
much like your story and what I have been trying to post many times is CFS is not real is actually a serious symptom indicating something is wronge in your body, I was misdiagnosed as CFS and I had Lyme since I was 7 years old and I am 20 now.
It doesn't make sense for people who HAVE CF to say that it "doesn't exist." Of course it exists! It can be a "symptom" OR a "syndrome." If you have chronic fatigue due to cancer or lyme disease, it's a symptom. If you have CF, and there is no obvious cause for it, then it is called Chronic Fatigue "Syndrome."
I have Fibromyalgia AND CFS. Is the CFS cause by the Fibro? Or is the Fibro cause by the CFS? We don't know! That's why it is a "syndrome." If we find that I have Lupus, and I am put on Lupus medicine the chronic fatigue may diminish. If so, then it was probably a "symptom" of Lupus, if not, then it remains a "syndrome" unless an obvious cause is found!
So those who have CFS have CFS, and those who have CF have CF! LIVE AND LET LIVE!
Last edited by chilln; 08-27-2004 at 07:24 AM.
Reason: missed word
Chilln,
Your right about it being a symptom and a syndrom and if they can't find the actual sickness than it is "CFS". The point is the doctors stop looking after they diagnose you with CFS. They say that CFS is the case of CFS. They don't say well there is actually something serious that you have going on to make you Chronically fatigued and until we find it out you are going to suffer from major fatigue problems. NO they say you have CFS and theres not much you can do for it, then if you try to persist that the doctor keeps searching they lable you hypocadrak! I was diagnosed with CFS and If I wanted I could come on here too and say Chronic fatigue is A REAL syndrom and I suffer every day for it. But I don't because I met a REAL GOOD doctor that could prove there is a real illness hidding behind the Chronic faigue. Yes I am chronically fatigued due to Lyme disease but why would I settle for CFS if I found out later after many doctors told me theres nothing if now I have holes in my brain due to lyme COME ON PEOPLE!!!!!!
Italy's I don't think you understood. A "syndrome" is a group of "symptoms." It is NOT necessary for ALL to call their fatigue a "symptom" nor is it necessary for ALL of us to call it a "syndrome." As for me, I call it a "syndrome" because I've had it for as long as I can remember, AND because it is the primary debilitating fator for me right now. My doctors are searching for my diagnosis, and guess what: as far as I know, they don't even know how fatigued I am! I'm sure they know I have it as a symptom because how can you be in this much pain and not be fatigued. But they are not focussed on the fatigue; they are searching for a cause. However, I have all the "symptoms" the Center for Disease Control relates to CFS. Therefore, according to the CDC, I have CFS. If a doctor says you have CFS, stops at that, and doesn't help you, get another doctor. YES, fatigue is a "symptom." But if the doctors have tried and can't find an underlying cause, then having CFS as a diagnosis AT LEAST gives one a NAME for their illness. And that in itself can be theraputic simply because it puts you in a category with others whom you can turn to for support. It also helps a person to realize that they are NOT lazy or crazy, and they are actually ILL. So you have a "symptom." I have MANY "symptoms" some of which when lumped together form something called Chronic Fatigue Syndrome. I also have Raynaud's Syndrome, which is also known as Raynaud's Phenomenon. Also Irritable Bowel "Syndrome," which, by the way is also thought to be a "Symptom," of other immune disorders. I have Fibromyalgia (also known as Fibromyalgia Syndrome.) Oh, and I have Restless Leg "Syndrome." I think it may be a "symptom" of Osteoarthritis, (which I also have.) Of course, doctors don't define Restless Leg as a "symptom." They call it a "syndrome" probably because they have not yet linked it to a particular disease. Put it this way: If you have an underlying disease of which chronic fatigue is a symptom; but that disease is "unknown," you still have chronic fatigue. You may call it a "symptom" if you wish. However, you may never know what the underlying disease is. So you will go to your grave saying you have a "symptom" of ?????? OR you may call it a "syndrome" to help distinguish your fatigue from that of people who are simply "tired" a lot. AND to negate the mistaken impression that you are being "lazy." It may make no difference to those who've never experienced this type of extreme fatigue. But to one who has CFS, it can make a difference in how we express ourselves to others. It doesn't matter what you call it. I think we all know (hopefully) that there is a profound difference in what we have (CForCFS) and other forms of fatigue which are either not as severe, or do not last as long. Anyway I'm done with this thread because I can better use my time finding ways to cope with my CFS (which may be a symptom of ???) If anyone knows what ??? is, please let me know. It is not lyme disease. It may actually be a residual of Mononucleosis, which I had 20 years ago. If so, please tell me how to cure it so I can be alive again!
Italy's I don't think you understood. A "syndrome" is a group of "symptoms." It is NOT necessary for ALL to call their fatigue a "symptom" nor is it necessary for ALL of us to call it a "syndrome." As for me, I call it a "syndrome" because I've had it for as long as I can remember, AND because it is the primary debilitating fator for me right now. My doctors are searching for my diagnosis, and guess what: as far as I know, they don't even know how fatigued I am! I'm sure they know I have it as a symptom because how can you be in this much pain and not be fatigued. But they are not focussed on the fatigue; they are searching for a cause. However, I have all the "symptoms" the Center for Disease Control relates to CFS. Therefore, according to the CDC, I have CFS. If a doctor says you have CFS, stops at that, and doesn't help you, get another doctor. YES, fatigue is a "symptom." But if the doctors have tried and can't find an underlying cause, then having CFS as a diagnosis AT LEAST gives one a NAME for their illness. And that in itself can be theraputic simply because it puts you in a category with others whom you can turn to for support. It also helps a person to realize that they are NOT lazy or crazy, and they are actually ILL. So you have a "symptom." I have MANY "symptoms" some of which when lumped together form something called Chronic Fatigue Syndrome. I also have Raynaud's Syndrome, which is also known as Raynaud's Phenomenon. Also Irritable Bowel "Syndrome," which, by the way is also thought to be a "Symptom," of other immune disorders. I have Fibromyalgia (also known as Fibromyalgia Syndrome.) Oh, and I have Restless Leg "Syndrome." I think it may be a "symptom" of Osteoarthritis, (which I also have.) Of course, doctors don't define Restless Leg as a "symptom." They call it a "syndrome" probably because they have not yet linked it to a particular disease. Put it this way: If you have an underlying disease of which chronic fatigue is a symptom; but that disease is "unknown," you still have chronic fatigue. You may call it a "symptom" if you wish. However, you may never know what the underlying disease is. So you will go to your grave saying you have a "symptom" of ?????? OR you may call it a "syndrome" to help distinguish your fatigue from that of people who are simply "tired" a lot. AND to negate the mistaken impression that you are being "lazy." It may make no difference to those who've never experienced this type of extreme fatigue. But to one who has CFS, it can make a difference in how we express ourselves to others. It doesn't matter what you call it. I think we all know (hopefully) that there is a profound difference in what we have (CForCFS) and other forms of fatigue which are either not as severe, or do not last as long. Anyway I'm done with this thread because I can better use my time finding ways to cope with my CFS (which may be a symptom of ???) If anyone knows what ??? is, please let me know. It is not lyme disease. It may actually be a residual of Mononucleosis, which I had 20 years ago. If so, please tell me how to cure it so I can be alive again!
I understand your frustration and agree with everything you've said here. I have had CFIDS for 11 years and have tried a zillion things. I think that Western doctors are still in the dark about this devastating illness. What has worked best for me is Chinese boiling herbs. Many people don't like the taste but I think they taste like the earth. This is the only thing that has helped me to return to functioning when I am in a "flare". This is not a "quick fix" but slowly heals the dysfunctional system. If this is not your "cup o tea", I understand, but if you want more information I would be glad to help.
Chilln,
Ok I understand you a little better. My Chronic fatigue was a symptom but before I was diagnosed with Lyme it did make me feel better a little now that I think about it that while "I" was searching for my real illness that I could discribe to people I have CFS and thats how bad my tierdness and fatigue was! I felt soooo tierd I felt insane and had to take care of a baby which is usually hard for even the healthist of people. But where my anger probably comes from is that my doctors told me is was CFS and theres nothing I could do about it except excersice. And also to explain how I felt they told me I was depressed and put me on the anti-depressant EFFEXOR. Which I went through such bad withdrawls from!!!! THEN since people take CFS as a "JOKE" My family labled me as a hypchondrake. Until I saw a doctor that told me Chronic fatigue is a carbage can diagnoses. I thought since the doctors said there was nothing I could do except to learn to live life in my pain, that there was actually nothing. BUT the POINT to make for Chronic fatigue that if your body is giving you warning signs you CAN'T settle for CFS!!! My doctors were telling me CFS and thats life!! So maybe it would be different if they said right now you have CFS and we will work hard to find out whats really going on in that body of yours. I felt hopeless for a long time until I started going to actually find out what was wronge. But the doctor that diagnosed mw with CFS thought I was a hypocondriak for searching further. When I took the western blot and extensive blood work I had a positive for bartonella and Lyme.
CFS is exactly that a syndrome.....It is a real 'syndrome'(or daignosis) although probably caused by something else.... So people who have it should never give up on looking for answers and on the other hand should not be ashamed because wacks out there think it isnt real... It's a real 'syndrome' whether they can find a cause or not....It alson doesnt mean you have to give in to having it for life because I believe it's very curable and when you do happen to recover you may never know the whole reason behind why you had it but that wont matter by then..
mcpucho
I agree that they need further help, even if they search there whle lives disease can hid in your body and it's there making you sick but never registers on a test. I am just curious what lyme test came up positive for you?
Hi chilln: It pains me that you sound so desperate. Listen, you are right not to sit and argue about what you have or don't have, whether it is a syndrome or a disease. For heaven's sake none of us here are doctor's for sure, but it doesn't make what you are going through any less "real". chilln, you know that the author of the book Seabiscuit has CFS. It's listed on the jacket with her bio. She actually uses some of the profits of the book and the movie to help research CFS. So, yes, it's very real, and it may have been cause by who know's what. There is a lot of theories that believe people that have Fibromyalgia may have it due to some trauma they experienced, like a car accident, surgery, some trauma to their body that caused the brain receptors that control pain to go "out of whack". Anyway, I may suggest taking a look at the Fibromyalgia section of these boards. So far there is no "cure", but there is a lot of different ways to achieve some relief and cope. New medications to specifically treat this condition are being researched and tested as we sit here. I have Fibro as well as problems with my cervical spine, lumbar spine, carpal tunnel syndrome and bursitis in my hip. Notice that all of these are syndromes, and you are right, for instance, my carpal tunnel was most likely caused by my waiting tables for 15 years, but it is real and something I have to live with. It can be treated with meds or surgery. And to be honest I fully believe, that if you can, if your insurance allows, (which they usually allow 52 visits a year) go see a proffessional.(like a physciatrist or social therapist) I see a therapist one to two times a month, just to talk. It's nice to talk to some one who can help you when you feel like you are overwhelmed. I don't feel embarrassed by it, and I wouldn't do without it. My therapist actually sees a lot of people with Fibro and other conditions that change our lives. I also see a phyciatrist who prescribes me medication to help me. I have good doctors who help me with my pain meds and other meds that help make me more comfortable. So, chilln, don't give up, don't give in. Stand by what you believe, you know yourself better than any of us here know you. Find a doctor that you feel comfortable with, if you don't already have one. Sometimes that takes a bit of looking. You can ask around your area. Maybe there is a support group at your hospital for people with CFS. Hang in there honey. Don't ever doubt yourself.
Good day and good karma.
tk
Last edited by tkgoodspirit; 08-31-2004 at 02:59 PM.
Reason: wanted to subscribe
Hi! I wanted to update a recent post on this thread. I will also duplicate this reply on the Fibromyalgia board.
Since there has been so much discussion and reaction to the links between CFS, Fibro and Lymes Disease, and the Western Blot test has been "thrown" around, I did a little reasearch about this test and want to share what I found on the Net.
First: The description of the Western Blot is as follows: A Western Blot is a method in molecular biology to detect a certain protien in a sample by using antibody specifically to that protien. It's name is a pun off the name Southern Blot, a simialr technique developed earlier by a man with the last name of Southern. It also used to be called a "protien immunoblot".
There are different variations of the Western Blot. Specifically the Lyme Western Blot.
lgG Western Blot: allows the antibody response to be visualized. This antibody is often present long after symptoms (lyme's) subside. If the lgG is negative then a lgM is ran.
lgM Western Blot: indicates exposure to B.burgdorfen. It can be positive for 6-8 weeks after tick bite.
LDA (Lyme Detection Blot Assay): this is a direct detection of Lyme antigen in urine.
Reverse Western Blot (RWB): detects antigens basically the same as the LDA, it just targets additional antigens.
Some other facts I found on the Net about this test are:
The lgM West Blot often shows positive in patients with persistent infections. Patients testing positive for Syphilis may also test positive for the Lyme antibody. Western Blot tests are not only given to dectect Lyme Disease, but variations of the Western Blot are given to detect other infections like, HIV or Herpes. The Western Blot uses many variations to measure antibodies and antigens.
So, there it is. There is more info out there. I just wanted to put out some info on the boards since reference to this test has been made in a number of posts.
I hope this informs you some what.
Good day and good karma!
tk
Last edited by tkgoodspirit; 09-06-2004 at 09:17 AM.
Well, the definition of CFS and CFIDS and 'gulf war syndrome' are similar ... the doctors say at the very least that they don't know the cause of your fatigue.
Yes, immune system is fighting something: your red blood cells. AND it does not show up in the regular blood work. Very much a mystery. I suspect 2-butoxyethanol poisoning for the cause of the fatigue of these. You can check two things to see if the harm of this chemical should be suspect for you
1-Do you have blood in your urine (even just a trace)?
2-Do you have lack of mature red blood cells? In other words, is the ratio off between the mature and immature red blood cells? Regardless of the results of the 'reticulocyte count' and the numbers of red blood cells being formed (a lot in the beginning, to not enough over time) there will be too many red blood cells that are immature.
Walter Reid Army Medical Center says autoimmune hemolytic anemia is very rare and that the 'gulf war syndrome' vets have no more incidence than the general public. I suggest that it is as commonplace as those who have CFS, CFIDS, 'gulf war syndrome' Look for it. Remember, too, that when you have too many immature red blood cells other tests are OFF. WBCs and liver for starters.
Besides the fatigue: 2-butoxyethanol causes the following per 2003 research,
Symptoms of hemolytic anemia are:
Chills
Fatigue
Pale color
Shortness of breath
Rapid heart rate
Yellow skin color (jaundice)
Dark urine
Enlarged spleen
This chemical also causes: Narcosis
Damage to the kidney
Damage to the liver
Present an abnormal blood picture showing: Erythropenia
Present an abnormal blood picture showing: Reticulocytosis
Present an abnormal blood picture showing: Granulocytosis
Present an abnormal blood picture showing: Leukocytosis
Likely to Cause Fragility of Erythrocytes
Likely to Cause Hematuria
from Hemat = blood and
uria = of urine
· Hematuria simply means blood in the urine
It causes Central Nervous System (CNS) DAMAGE:
Difficulty concentrating
Short term memory loss
Becomming very irritable 'fly off the handle all the time over nothing'
Difficulty sleeping
Suicidal Tendencies
along with ... Central Nervous System DEPRESSION
Loss of taste
Headaches and Stupor.
Causes skin irritation.
Causes severe eye irritation - damage to tissue possible
Irritating to mucous membranes and upper respiratory tract
2-butoxyethanol CHRONIC EFFECTS - TARGET ORGANS, per research:
SENSE ORGANS AND SPECIAL SENSES (Other olfaction effects)
BEHAVIORAL (General Anesthetic)
BEHAVIORAL (Altered sleep time)
BEHAVIORAL (Somnolence)
BEHAVIORAL (Excitement)
BEHAVIORAL (ATAXIA)
BEHAVIORAL (Coma)
BEHAVIORAL (ANALGESIA) LUNGS, THORAX OR RESPIRATION (DYSPNAE)
LUNGS, THORAX OR RESPIRATION (Other changes)
GASTROINTESTINAL (Nasea or vomiting)
GASTROINTESTINAL (Other changes)
LIVER (Tumors)
KIDNEY, ureter, bladder (hematuria - blood in urine)
KIDNEY, ureter, bladder (other changes)
ENDOCRINE (Tumors)
SKIN AND APPENDAGES (Hair)
MATERNAL EFFECTS (uterus, cervix, vagina)
MATERNAL EFFECTS (Other effects on female)
EFFECTS ON FERTILITY (Pre-implantation mortality)
EFFECTS ON FERTILITY (Post-implantation mortality)
EFFECTS ON FERTILITY (Litter size)
SPECIFIC DEVELOPMENTAL ABNORMALITIES (Musculoskeletal system)
SPECIFIC DEVELOPMENTAL ABNORMALITIES (Cardiovascular system)
NUTRITIONAL AND GROSS METABOLIC (Weight loss or decreased weight gain)
NUTRITIONAL AND GROSS METABOLIC (Changes in: metabolic acidosis)
TUMORIGENIC (Carcinogenic by RTECS criteria)
TUMORIGENIC (Equivocal tumorigenic agent by RTECS criteria)
It's the 'tornado' chemical. Comes and goes quickly, but the devastation is horrific!
Re: CFS is a misdiagnosis 
Re: CFS is a misdiagnosis 
I wanted to update a recent post on this thread. I will also duplicate this reply on the Fibromyalgia board. 
