Could it really be this simple?

Discussion in 'The Watercooler' started by flutterbee, Jan 19, 2009.

  1. flutterbee

    flutterbee Guest

    I haven't looked into Chronic Fatigue Syndrome since I was initially diagnosis'd in Feb, 2007. After the heart attack in March, 2007, the CFS diagnosis was discounted saying the heart disease was causing the fatigue.

    I have been tested for just about everything under the sun. Tonight I looked at the CDC fact sheet again on CFS due to something KJS mentioned in a post (unrelated).

    And I match it. Completely. The joint pain, muscle pain, fatigue, yada, yada, yada.

    I think I easily discounted it because there HAD to be a reason for my heart disease and CFS is hard to treat and I wanted something treatable...not just manageable.

    But, now I'm wondering. Could it be this easy. Could it be fibro and CFS causing my illness? It would explain my symptoms and lack of findings in blood work.

    Or am I just sick of searching for the answer and want to give it a name?

    I don't know, but will definitely talk to my doctor about this when I see her later this week.
  2. susiestar

    susiestar Roll With It

    It really COULD be that simple. But neither fibro nor CFS is easy to treat or manage. Knowing what you have can be a big relief though. And there are things you can do to help manage these disorders.

    I hope the doctor has some answers.
  3. Kjs

    Kjs Guest

    when you do get some answers be sure to post. Meanwhile I will look into this too.
    I look forward to your discoveries.
  4. Josie

    Josie Active Member

    I know you don't want to do long term antibiotics. However, the Lyme doctors that I have seen believe CFS and fibro are mostly caused by Lyme Disease. One of them started as a CFS specialist. When he tested his CFS patients with a more sensitive Lyme test, over 90% of them were positive.

    CFS and fibro, from what I understand, are really just a collection of symptoms with no known cause. If it is bacterial, there is hope of improvement on antibiotics.

    Lyme is not a good diagnosis but there is hope.

    The Lyme tests are not accurate. The mainstream doctors will tell you there is a high false postive rate, while the Lyme doctors will say there is a high false negative rate. If the Lyme doctors are right, that would explain your lack of findings with blood work. Even the CDC says that Lyme is a clinical diagnosis.

    I have a few Lyme symptoms, myself. I have joint pain, muscle twitching, and shortness of breath. I had a positive Lyme test and when I take antibiotics, my joint pain and air hunger go away. My muscle twitches are almost gone. My leg muscles used to twitch almost constantly. My Lyme doctor said I was probably 10 years away from being really sick if I hadn't known. Who knows if that is really true but I am definitely better on antibiotics than not.

    FWIW, the celiac boards believe celiac disease is a cause of fibro and CFS. When I went on the girlfriend diet, I no longer needed a nap or an early bed time. Again, the celiac tests are not very accurate. They might be accurate by the definition of celiac disease but they do not detect illness caused by gluten very well. Probably at least half of the people in my local celiac support group figured it out on their own. Celiac disease is a better answer than Lyme Disease and you can try it on your own, without a doctor, pretty easily.
    Last edited: Jan 22, 2009
  5. ML

    ML Guest

    I hope you find answers, even if it is a hard to manage condition like CFS. Interesting what FOP said. It does seem like many things can be improved by diets that reduce gluten and casein, especially immune stuff.
  6. Marguerite

    Marguerite Active Member

    I researched this topic THOROUGHLY a number of years ago, when they were first talking about Lyme Disease in Australia. I am very wary of ANY doctor who has a revolving door approach to diagnosis, where just about every patient who goes to see them, comes out the door fairly quickly with the same diagnosis as everyone else. It's like an assembly line for these doctors.

    That's not to say Lyme Disease isn't real, and a problem. But the more you muddy the waters by diagnosing as many people as possible as haphazardly as possible, the more confusing become the diagnostic criteria, especially those diagnostic criteria which haven't been endorsed by CDC (you know - the sort that are adopted by support networks first, on the recommendation of their pet specialists, but they have a huge fight in getting CDC to recognise them).

    We had an epidemic of Lyme being diagnosed in Australia. I was heavily involved in the CFS community here at the time and watched with horror at this spread. But what really horrified me wasn't the actual spread of a diseases, but the spread of misinformation and deliberate misdiagnosis, purely to boost numbers and justify some pretty appalling treatment procedures, all with zero evidence of any naturally-occurring Borrelia burgdorferi in Australia.

    My considered, educated opinion on this - CFS (and its other accepted names, CFIDS, ME etc) is a genuinely nasty but still poorly understood medical condition. It is a syndrome, in that it is still only diagnosed by the constellation of symptoms tat present. Other possible causes need to be excluded. It is a gaerbage bin diagnosis, in that it's the label you get after everything else has been ruled out. And in a lot of cases, once you get the label they wash their hands of you, or at best simply stop looking. Fibromyalgia is increasingly being used as a diagnostic label when it really is only one symptom of a number of conditions, including CFS. But I've known some doctors who, in an area where the CFS tag has a bad reputation, will call it fibromyalgia instead.

    The end result is much the same - you have a condition which is still a puzzle (despite some doctors being insistent they understand the disease process; they may THINK they do, but the rest of the world may not agree).

    Fatigue affecgts everybody at some stage. Chronic fatigue is a symptom that affects 1 in 4 people. Chronic Fatigue Syndrome affects between 2 and 5 in every thousand.

    CFS people around the world will give you a wide range of triggers that they believe was the precursor to their illness developing. I've heard of glandular fever being a very common one (so for a long time it was called CEBV or Chronic Epsetien Barr Virus). For others it was chemical exposure, or immunisation, or with some athletes it was simply over-training. Tick bite was very low on the agenda, especially in climates where ticks are not very common.

    But Lyme Disease is also definitely a real condition. Lyme is NOT the same as CFS, however it can superficially resemble it. Lyme runs a different course and people with CFS can find themselves caught in the Lyme Disease net.

    Lyme Disease was first identified around Lyme County in Massachusetts. It had highly specific symptoms (a rash, joint aches and pains, a fever at one stage and a specific type of rash). I'm a bit rusty on the history, it's been over ten years since I read up on it in detail. But I can, from my own experience of friends going through the torture of treatment after being 'diagnosed' by inappropriate use of the tests, strongly urge you to not rush into antibiotic treatment without being REALLY sure you have been properly tested.
    Here is an extract from Wikipedia:
    So why do people test positive for Lyme, if they don't have it?
    The answer, unfortunately, is simple. It's because the "more sensitive tests" are actually the old tests, being interpreted more widely.
    An example - you're playing "Guess Who?". Diagnosing Lyme (and a number of other conditions), properly, is like this. Yes, it's a blood tests but there are bottles of reagents and things, complex reactions happening and tests within tests. So this is the closest analogy.
    So your doctor has your blood test under the microscope and is asking, "Does it have grey hair? Does it have facial hair? Is it male/female? Is it wearing a hat? Does it have blue eyes? Its... Mr Lyme!"

    Now, the trouble with the "new, sensitive tests" has been that it's like the doctor looking through the microscope and saying, "Does it have a head? Then it's Mr Lyme! Yay! a diagnosis!"

    That's not to say that the tests aren't picking up something for sure. And you might think, "where there's smoke, there's fire." But just as MRSA is a scary bug, it is still Staph aureus, the common bug that causes pimples. Everyone has staph aureus on their skin, not causing any more trouble than the occasional zit (if that).
    Similarly, while Borrelia burgdorferi is a nasty bug which, if injected into your body by an infected Ixodes tick, is likely to cause Lyme Disease in your body, there are more harmless types of Borellia species (or even other bacteria that are flagellates like Borellia) which look sufficiently similar to a losely interpreted test to need to be more carefully ruled out.

    Australia was a good place to test this. Unfortuantely, there were two warring hosptial research teams. One had research I had cause to doubt, in other areas (long story, loaded with sharks). The other had traditionally had the funding into tick research but people were getting impatint because they hadn't found anything. So there was a big hate campaign going on mutually over the fight for the funding (which was really stupid, because funding doesn't work that way).

    Group A were catching ticks all up and down the coast, had been for years, studying their mouthparts and digestive organs and looking under the microscope for Borrellia burgdorferi or similar. They had found nothing after a number of years.

    Group B got themselves a research student to go looking in ticks too, meanwhile they worked on trying to isolate Borellia burgdorferi from patients' blood. They quickly announced success.

    Group A hadn't announced anything - they had nothing to announce. Trying to tell people you've spent a lot of money finding nothing, is a non-news story. They were publishng this in the journals, I beleive, but it wasn't very exciting.

    Group B published in the popular science journals (not the peer-reviewed, who wouldn't touch it). Their story found its way quickly into the media (they had a good PR man). But the media quickly found Group A and the catfight was very publicly on.

    I studied the one main article in the popular science journal. Superficially, it seemed to say that they had successfully found Borrelia burgdorferi in Aussie ticks and also found it in a patient's blood; they also told how many patients had tested positive with the standard blood test. The article had a photo of what it would look like.

    Then Group A publicly challenged them - "show us." They wanted photos of the microscope slides. Group B got sheepish. "Can't find them". "Not telling you." A closer examination of the article showed that the photo, which had been interpreted as being a shot of Borellia as found by Team B, turned out to be a photo of an anonymous spirochaete, not necessarily isolated form a Lyme patient in their care. The research assistant who claimed to have found Borrellia, finally admitted she only thought she had found it, but it's easy to be mistaken.

    The topic died, but the hysteria it raised had caused a lot more people to rush off and have the blood test. These people either never read, or never understood, the debunking. Team B were scathing about Team A and saying, "We have the truth, the others are just jealous, the mainstream scientific community don't like us because we're at the forefront."
    Very naughty. Science really isn't like this (or it shouldn't be).

    But the end result - I watched a lot of people undergo antibiotic treatment and get very sick. The irony was, the sicker they got (often with what I beleived to be allergic reactions) the more their doctors insisted, "You MUST persist, this reaction is the sign that your disease is fighting back, the antibiotics are winning but the bug is fighting to the death."
    It was circular, catch-all logic; if you were getting better, that was great news. If you were getting sicker - well, that was great news too.

    Now, Borrellia is the sort of bug we all have in our bodies, harmlessly. It lives in the gums. causes gingivitis, I beleive. But Borrelia burgdorferi - it's nasty, it causes Lyme Disease.

    Australia is a long way from Massachusetts. The cnace of a bug from the US finding its way here, via a tick, is remote. But the chances of us having our own nasty bug - that is more likely. But you can't diagnose something tyou haven't originally identified and set your tests for. It's like looking for an infiltrating spy who could be male, female, black, white, old, young. You can't use the Identikit photo of a known spy who is currently known to be elsewhere, and expect to catch the problem spy.

    We live in a world where we have not identified all the nasty disease agents that exist. A lot of those disease agents are carried by insects or similar (called "arboviruses" or "arthropod-borne" viruses). Australia is likely to have a large number of nasty, but previously unknown, arboviruses. We have enough trouble with the ones we know (such as Ross River Fever).

    The other problem - even if you do have an arbovirus, antibiotics are not necessarily going to make you better. In a lot of cases,s the bug invades your body knocks over your immune defences, makes you sick, then dies. But your immune defences have been knocked over and it will take time to recover.
    In other words, if you slip on black ice and break your leg, you won't magically be healed when it all thaws.

    For those of you who have been identified as having Lyme Disease, I really hope the tests were interpreted properly and you are improving with appropriate treatment. it's a horrible disease to have but with quick treatment, you should recover.

    For those of you with CFS, please do not believe every doctor who says he can identify your illness and cure you. It could be a very expensive, painful process for you with no surety of healing at the end of it. I've known people who were made much, much sicker through treatment for a disease they didn't really have after all.

    I'm not automatically down on all alternative practiioners; the trouble is, it is through complementary medicine that the nasty boys sneak their dirty tricks through, and exploit some very vulnerable, desperately ill people. I say "boys" but there have been female doctors too, responsible for this misinformation.

    Some of them really believe in what they are doing. But there is belief based on facts, and belief based on being convinced by someone with a very strong motive for being seen to be right.

    Heather, I really hope you find some answers. Good for you to be asking the questions.