Too many, too similar

Discussion in 'Chronic Fatigue Syndrome (ME/CFS) Research' started by Not dead yet!, Jun 17, 2017.

  1. Not dead yet!

    Not dead yet! Well-Known Member

    I noticed a couple of things that I hadn't noticed before. First, a few years ago, I was living in another state, and medicine is very localized. Simple examples abound... one state, they give you silvadene cream if you so much as cut your finger, and in others, they treat that as if it was a top secret, and if you ask, they act like you've breached security. Medicine is odd that way.

    So in another state, I constantly had doctors tell me I might have meningitis. But they never did anything, never tested for it, and never offered any help, so it never went anywhere.

    Now I'm in a new state and they tell me I probably have FM or CFS, again, hard to get a full diagnosis, none exists really. After the FM statement, I went to a very careful and intelligent Rheumatologist who spent 3 hours talking to me and getting a full report on how I felt over my whole life. She says I don't have FM but OA, after blood tests. If I move again, that may be overturned.

    It's enough to drive me crazy.

    So I read up on CFS and attempt to stop my exercise routine because it's apparently "bad for me." After several months of that I don't notice any improvement in my condition so I may as well continue exercising and have the ups and downs rather than the continual downhill I was on.

    And one day I wake up feeling a crick in my neck. I remember the doctors who said I had meningitis and I remember that there is such a thing as viral meningitis. I look it up:

    http://www.meningitis.org/disease-info/types-causes/viral-meningitis

    https://www.cdc.gov/meningitis/viral.html *note what they say here about non-polio enteroviruses? If that doesn't raise your eyebrows, you haven't been paying attention.

    Another wonderful unprovable thing attributed to viruses that I can find with a blood test - and I've already tested positive for. And the common wisdom is that it needs no treatment. Ha. I recently took a short break from Valcyclovir and within 2 weeks the stiffness in my neck was so bad it sent me looking for why.

    There is only one pattern I'm aware of in all of this. Modern medicine doesn't want to treat viruses. Any viruses. Tamiflu has never been prescribed or offered to me. Not once. Maybe if I lived in a city, it would be, but again with the local medicine phenomenon. We know humans are affected by many retroviruses but HAART use is restricted to AIDS patients. Even getting to that point for AIDS sufferers was a long hard battle. Technically my doctor is not supposed to be giving me Valcyclovir for CFS, and I'll probably have to convince him of its usefulness once the 6 month course is over. That fact gets me into the gray area of self-diagnosis and requesting treatment that isn't standard.

    But I do wonder why I never heard of viral meningitis and CFS in the same resources. In fact, I see a lot of skepticism about the idea that a virus or several are causative in CFS. If viruses hijack our metabolism to reproduce and if retroviruses actually rewrite our DNA, then why aren't we fighting them? Why are patients left to make requests of doctors to get better? Why do we give different names to one illness, and each one has an online description that includes "most people don't need care"? Why do we demand that only ONE virus can be fought at a time? Maybe the issue is the fragmenting of research into fake categories.

    After all you use a broad spectrum antibiotic nearly always. Why do we use such precision in fighting viruses?

    I think the alphabet soup of CFS, ME, CFIDS, etc etc etc... just works to maintain these distinctions and hide the other illnesses that are similar. And I think that antiviral treatment should be taken much more seriously. In the current situation of separating MS, tick-borne disease, and Meningitis from the larger group of virus-caused disease, we're hamstringing the efforts to make drugs that, like antibiotics, are somewhat specific to the type of virus, but mostly they are broad spectrum.

    I also think that the antibiotic resistance hysteria is feeding the feeling of futility in making such drugs, or developing such treatments. So I think there are too many similar illnesses that all fit, more or less, the picture of viral illness. And it's long past time for us to fight that with the correct medication, not palliative care.
     
    Last edited: Jun 17, 2017
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  2. weyland

    weyland Well-Known Member

    The western world really hasn't done enough to understand viruses. With bacteria it's simple, they should not be in our body and if they are it's bad news. You keep throwing antibiotics at it until it goes away. With viruses it's not so simple. Every single healthy person walking around out there right now is viremic with several viruses at any one time, and yet they remain healthy. Take two people and infect them with the same influenza virus, one person might feel kind of crappy for a few days and then get better, the other person might end up in the hospital, have a massive cytokine storm, and then die. Infect two people with poliovirus, one might not have any symptoms at all, the other might develop poliomyelitis and/or die. Viral infections are far more complex and they require an understanding of individual differences in immune systems and also you have to understand that the location in the body of a viral infection probably matters more than anything else. We have basically no broad spectrum antiviral drugs in the west, so the doctor can't treat it like they do a suspected bacterial infection. Doctors don't understand bacterial infections either but they don't have to, again they just throw antibiotics at it until it goes away or you die. There's no complexity in it.

    Eastern bloc countries have done far more in this area. While they don't seem to have been working on targeted antivirals, they have focused pretty heavily on generic immune modulating drugs as a broad spectrum treatment for both viral and bacterial illness. You can walk in to a pharmacy there and obtain several dozen different types of immune modulating drugs for barely any money at all. They are not afraid to try to treat viral illness there, while here the doctors will just give you saline and assume you'll get better on your own. ME is proof though that sometimes a viral illness, even with a normally trivial virus, cannot be beaten by the immune system alone.

    In general, yes, ME looks a lot like viral meningitis/encephalitis because that's probably what it is.
     
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  3. Not dead yet!

    Not dead yet! Well-Known Member


    OMG the Eastern Bloc. I left there as a child. Maybe I should've stayed. Naahh. :p

    Wow that touched me like lightning. I'd love to be a health traveler but I'm not sure the Eastern bloc is ready. I know the link below is about a fictional movie, but I experienced similar health care when I was a child back there:

    The Death of Mr. Lazarescu (movie review)
    http://medhum.med.nyu.edu/view/13332

    OTOH, whenever I see research from Serbia I pay close attention because it is usually about infections of some kind and it's usually extremely good. Ditto for many SE Asian countries and Japan. Unfortunately I have the same problem with Eastern Bloc that I have with modern USA medicine. I can't wait for them to get their act together. I need my life back right now, today.
     
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  4. Zapped

    Zapped Well-Known Member

    Let's trip the light fantastic... . Existentially, maybe this is the way we're supposed to feel (CFS), e.g. after crossing some threshold in life, now for the first time (era) being broadly communicated. Thus, it's really all in our heads, sic the way it's supposed to be, relegated to the stuff of the Pace trials... .

    This paradigm sure makes it easier to not get our panties tied up in such a wad:wacky:

    OTOH, I'm completely sympatico with @not-dead-yet' s ascerbic perspective on medicine and its almost useless contribution to our cause. If you read it's history in America, it only got ubiquitous respect after the 1950's, its heyday, pursuant to solving the national polio crises. Before that it was mostly a questionable science practiced in dark mental institutions where the most morbid of treatments were 'practiced' on mentally disturbed subjects. This followed its earlier aegis, coexisting under the banner of the barbers' pole, where one could settle in for a a shave, a shit and a checkup... .:cool:
     
    Last edited: Jun 22, 2017
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  5. Not dead yet!

    Not dead yet! Well-Known Member

    I think that many positive steps are being taken to address the problems with medicine. Unfortunately, they still fall under the 'alternative" and "reforner" category. Until we can embrace these changes we will have nothing but Pharmaco medicine. Positive steps I see:

    1. There is a backlash against peer review in science today. That would hamstring the Pharmaco's power to control the information that may be published.

    2. There is a new category of doctor, the Functional Medicine MD, who eschews Clinical Practice Guidelines not because they are loose cannons, but because it hinders their ability to be a doctor at all, in cases that are not clearly defined.

    3. Older doctors are retiring in droves. Soon few of them will remember what medicine was like before 1990, or 1970. The lack of experience will drive ordinary MD's into a whirlwind of uncertainty, and that's already happening. Many new doctors are choosing other careers because of the current climate of uncertainty and malpractice insurance. One of the few bright lights in that story is the concierge service which allows older doctors to see fewer patients than normal and spend more time with them, thus finding better solutions for them.

    It's tempting to blame the patient for "doctor hopping" but the blame lies in the CPGs which promise to make doctors choices easier, but have the effect of destroying the doctor's ability to help many people.

    4. Some pharmaco bribery schemes involving brick and mortar pharmacy chains have been prosecuted lately. http://projects.propublica.org/graphics/bigpharma but I was specifically referring to pharmacy benefit managers: http://prospect.org/article/hidden-monopolies-raise-drug-prices

    As for whether or not this is how we "should" feel when we're old, only people from a nuclear family society can think that. I count myself lucky that I grew up in a house with 4 generations in it. I know how I'm supposed to feel at age 45. My mother made her 10th million at my age and worked 18 hour days, sleeping late on weekends to catch up. Ditto for the other women I know and lived with daily.

    We've had odd allergies in our family, one of us can't drink coffee at all, another one became anorexic (male) because he got sick on nearly all food. We're not all perfectly healthy, but what's happening to me has perplexed my family and myself.

    For more stories and explanations of how it feels to have CFS, and not just be "slowing down" see this series of videos showing evidence given to the Federal CFS Advisory Committee in 2012. If you search around, you might see our forum founder in the video series also.



    There is hope, but sadly we are often too tired to push for it.
     
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  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    We are too tired. We can do some things - we can push for change but to be really effective we need help which is why I'm so glad that Carol Head hired the first full time advocate for ME/CFS ever.

    Getting more healthy people behind us will be so valuable...

    Let's hope that more and more young researchers will see ME/CFS as a growth field for them. I'm encouraged by Jared Younger :)
     
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  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    How about just encephalopathy? Dr. Natelson feels good saying that 50-60% of ME/CFS is encephalopathy.
     
  8. weyland

    weyland Well-Known Member

    Sure, it's not hard to argue that. This disease clearly affects the brain.
     
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  9. Zapped

    Zapped Well-Known Member

    In such a name change, I'd like to see the progressive nature of the illness addressed, e.g. Degenerative Encepalopathy, or degenerative systemic encepalopathy, ...DSE 'takes a step up the alphabet;)
     
    Last edited: Jun 23, 2017
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  10. Zapped

    Zapped Well-Known Member

    Well reasoned and appropriately stated, IMO.
     
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  11. Not dead yet!

    Not dead yet! Well-Known Member


    That's interesting, I was just reading something about this. It started out as exploration of the Perrin technique (suggested by @Remy in another thread, as part of an overall plan for how to tackle CFS in general). I found Dr. Perrin's research: http://jaoa.org/article.aspx?articleid=2093441

    ...and was reading about it and looking up unfamiliar words as I usually do. I got the message that lymph drainage is part of the issue with CFS, especially cranial lymph. And I can demonstrate the effect because if I do manage to get 8+ hours of uninterrupted sleep, I wake up stiff as a board until I do specific body movements (the aching never goes away, but at least I can walk upright again). I recognized those movements when I looked at the massage techniques.

    Eventually I looked at Lymphoma, which I know is a higher risk for CFS patients. There is a concise infographic here: http://breakthroughs.cityofhope.org/wp-content/uploads/2015/07/lymphomainfo.jpg

    A lot of those symptoms are evident in me. I have the constant cough, the unexplained fevers, etc, but I don't see any swollen lymph nodes, at least not visibly through the skin. I have my suspicions about lumps in my neck that could be swollen salivary glands or something else. Unfortunately many of those symptoms fall into the vague "flu like" category too.

    What jumped out at me about it was the statement "Survivors of atomic bombs or nuclear reactor accidents are at higher risk..." Well that just put the bloom on the rose for me. What if the "clustering" we are seeing is due to the old atomic tests? Wasn't a huge cluster of CFS in Nevada? That fallout is spreading mostly eastward around the USA and Canada. It would be about the right timing to have it be a problem now.

    If you'll allow me to indulge in a bit of "what-if-ing" what if the bad behavior of our government powers that be regarding CFS (secrecy, ignorance, and ridicule) was a targeted way of hiding the fact that they may be culpable? Look how long scientists fought to make those tests underground. They were often ridiculed or discredited if they entered that arena. Eventually some tests went underground, all of them in the USA but there are other countries. In the early 1990s, the USGS did a ground level radiation study, and those maps are published.

    I wonder if anyone's ever done a comparison of those ground level radiation maps and CFS. I'm not likely to be the first person to think of this. The government surely isn't able to stop all nuclear wars, and therefore they must continue to have such weapons and to be safe those weapons must have a way to be safely tested. The gov has no choice. If they stop, those with fewer morals will simply smell blood in the water. So I'm not advocating a moratorium unless it is global. But I do think if this is true, then the truth should at least be where it needs to be: out.

    Some of the maps/survey data I've found online:
    https://pubs.usgs.gov/of/1989/0287/report.pdf

    Which I think led to a test in 1991-3 of all the ground level gamma radiation in the USA. However this map is not published online by any reputable source I can find anymore. It can be purchased on a CD from the USGS directly though:
    Reference; Phillips, J.D., Duval, J.S., and Ambroziak, R.A., 1993, National geophysical data grids--gamma-ray, gravity, magnetic, and topographic data for the conterminous United States: U.S. Geological Survey Digital Data Series DDS-9, 1 CD-ROM disk. [includes potential-field software version 2.1]

    However you can play with an online map and it shows areas of relatively higher/lower gamma radiation from three sources: https://mrdata.usgs.gov/general/map.html

    In an ideal world, Public Health professionals would be working with the USGS to see if the trends of illness matched any geophysical patterns that are already revealed. Instead they are largely employed in downplaying any useful connections by being restricted to only that data which has been scientifically proven already. That's a huge arrogance. It assumes there is no new information to find.

    Instead we have people at home with Geiger counters testing the food they buy:
    http://sccc.org.au/pages/The-Food-Lab.html

    And a mass media poised to make fun of them for being paranoid. But are they?

    I honestly don't care if the nuclear tests and disasters led to my illness. I do care if it's being hushed up while I quietly die. In the whole of human experience (that I know about) nothing is more beautiful than the sound of "I'm sorry, I didn't know what the harm would be. And I'll try to do better."

    And yet, as a matter of intellectual honestly, I must still say, that all I've said is a "what if" scenario. We don't know for sure, and that is the problem. The situation could be as simple as, if you get a nasty virus, your resistance to normal irritants is increased. That much we already know from allergies. Realistically we can't "fix" all problems, but at least we can work toward being able to deal with them better. Just because the problem won't go away doesn't mean we're helpless. As long as we have ingenuity, we're never helpless.
     
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  12. ariane lamo

    ariane lamo Member

    I strongly agree with you, my answere to you is this:
    Retroviruses and viruses are not just the underlaying cause of me/cfs or meningitis, they are responsible for a large cohort of cronic illnesess , this illnesess generate trillions of dollars a year to big pharma.
    In the world especially in western world,big pharma is the mos powerful industry, not even oil, drugs cartels nothing, they control washington politicians, FDA, NIH,CDC.. they owned the media .. wich means they control wich study they fund, wich one they don't, that is why they have never funded me/cfs and have keeped in the dark ?
    becouse they benedict 50 times more from the treatments of all other illnesess, than from the antiretroviral treatment they get from ME/cfs..
    they have keep hiv/aids as the only human retrovirus that can change humans immune system and kill them , they don't want to admit and change the way that humanity look at disease, cancer , heart disease and many other illnesess .. they don't want to admite what we know that cmv, coxackie, ebv can cause neuro disease but also organs infection heart infection, xmrv mlv related viruses can induce tumornecrocis and vasculitis..
    they benefit more from heart treatment , cancer treatment, pain killers etc...
     
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  13. Lissa

    Lissa Well-Known Member

    As a former geographer I've often wondered what mapping "outbreaks" might reveal --- In conjunction with various environmental toxins, radiation, contamination, what-have-you.

    I feel like the problem there is that we are limited in getting any accurate headcounts with locations. Last I checked the "map".... I forget which organization had started it.... there were only 3,000 or so people with ME/CFS willing to submit info. Clearly those numbers will reflect squatoon in the grand scheme of looking for patterns.

    Quite disappointing--- as I think it would be really fascinating information!
     
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  14. Merida

    Merida Well-Known Member

    @Lissa
    Yes! Who knows what new info could come from mapping. Maps would need to follow the birthplace and migration, travel, and the point where symptoms began. Not a problem for computers.
    What happened in Incline Village, were one of the first outbreaks occurred? A careful history of the area may help. Perhaps Cheney or Peterson did this informally?
     
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  15. Merida

    Merida Well-Known Member

    I re-read this discussion. I am continually grateful for these insightful comments that help me understand a new perspective. Thanks, everyone.

    @Not dead yet!
    Your comments on the Eastern Bloc made me remember some interesting research. Flegr et al. published research on toxoplasma that found people who are RhD negative had more neuro issues ( poorer reaction time) than the RhD positive folks. Hmmm.

    Also, the biggest nuclear accident ( more radiation released than 3 mile island) in the U.S. occurred about 10 miles from my house at the Santa Susanna Field laboratory, between the SAN Fernando and Simi Valleys in northern L.A. This was in the 1950s. There were a number of cancer clusters. This accident was so hushed up until very, very recently that a local ( expert) historian did not even know about it.

    @weyland
    Viruses : Yes, I saw this whole scenerio with my son, age 5. Had a very high fever for a week - especially at night. After 2 weeks I thought he was getting better and all of a sudden he had extreme urinary frequency, then irritable bowel, them pain in the fingers/toes, night time hunger, sudden sleep problems, and more. Within 8 weeks ( after being told by multiple doctors that he just needed more attention - I was a stay at home Mom at that point) I found a urologist working on the 'fringe' who ordered an EBV panel ( 1986). And there it was - she captured the initial
    rise in the specific immunoglobulins that indicated recent infection.

    So, more recent reading made me think he had a transverse myelitis. Or maybe a cytokine storm? He had symptoms on/ off for 8 or so years, maybe until present day. Several of his friends had a similar scenario, but much milder. One of these friends developed schizophrenia in college.

    But then, we also know about prions - infective reproducing proteins!!!! They aren't even living organisms. And those crazy Borrelia, Mycoplasms, Babesia, C. Pneumoniae. I've got 3 of them At least.

    I feel defeated.
     
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  16. Not dead yet!

    Not dead yet! Well-Known Member


    Where is this map? I haven't discovered it yet. Might be very helpful.
     
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  17. Lissa

    Lissa Well-Known Member

    There is a site called diseasemaps.org --- I forgot which acronym they go by in terms of CFS "titles". I think it is combined with ME though. And they do many other diseases as well.

    Try https://www.diseasemaps.org/chronic-fatigue (I got there from logging in to my account... not sure if you need an account to see it? I don't think so -- maybe just to be on the map itself.)

    Looks like they are up to 3,500-ish now which seems to be worldwide. Here is a screen copy from this morning... well drat. I don't see how to attach a picture.

    Anyway --- it is an interactive map so you can zoom in and out, pan across countries, and also click on members for more information. Some are patients, some are researchers, some are advocates. It's quite interesting --- but doesn't tell much of a story with such spotty numbers. One could probably just say oh -- huh. Yeah it correlates with population centers.

    What it obviously needs is WAY more contributors willing to put themselves on the map! :)
     
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  18. Not dead yet!

    Not dead yet! Well-Known Member


    We're not defeated until we stop seeking answers. Humans today are just as smart as Socrates or Shakespeare or Sun Tzu, or Nefertiti, etc... but we must have confidence to use it. The most cruel thing we can do to someone is shake their confidence.

    Which is why I can't figure out why some doctors have this attitude problem. If they don't know what's wrong, then they blame the patient. This STFU-via-criticism behavior should be something patients can complain about and expect that the Medical board would censure a doctor for it. It would be much better if they said they didn't know and acknowledged that there are limits to everyone's knowledge in medicine. This humility is lacking. And as a result many people, not just CFS/ME patients, don't feel like they are working with their doctor towards anything. They go, they explain what they can about their symptoms, and their doctor puts it back on them, so they go home, and wait, and then repeat it when symptoms get worse.

    No doctor has every told me to eat liver, but that's what worked for me and is still improving my health. If I asked for specifics about what diet they recommend, they'd basically tell me about DASH. But there are no liver recipes or recipes with lots of egg yolks there. So it's a choline deficient diet. Even if I didn't object to the focus on grains and wheat, I'd still be eating a not healthy diet for me.

    We've also forgotten how to make foods like fish, oysters, organ meats in a tasty way. They're "variety" meats now. And that means "optional." Modern cookbooks overlook these or have one recipe repeated ad nauseum in each book. Fish was often eaten with fruit in the middle ages. And soaking it in milk stops the "fishy" smell. but how many doctors will tell you that? They may say fish is good for you, but how to prepare it? That's up to you, a test of your cooking skills.

    So in the interest of being positive about this... if you want to test out various old time foods to see if they help you, a great old cookbook that's free online is (1861, Victorian Britain, public domain):

    http://www.mrsbeeton.com/

    Project Gutenberg has a few versions you can download too, and also a couple other books of hers like a needlework one. :)

    My favorite way to eat liver now is to cook it like seared steak medium rare. It isn't "dry and chewy" that way, it's more like silky and the aftertaste is much less.

    So here's an example of how brilliant some of these old recipes are (from the Invalid Recipes section):

    "BARLEY GRUEL.
    mce-anchor1856. INGREDIENTS – 2 oz. of Scotch or pearl barley, 1/2 pint of port wine, the rind of 1 lemon, 1 quart and 1/2 pint of water, sugar to taste.
    Mode.—After well washing the barley, boil it in 1/2 pint of water for 1/4 hour; then pour this water away; put to the barley the quart of fresh boiling water, and let it boil until the liquid is reduced to half; then strain it off. Add the wine, sugar, and lemon-peel; simmer for 5 minutes, and put it away in a clean jug. It can be warmed from time to time, as required.
    Time.—To be boiled until reduced to half. Average cost, 1s. 6d.
    Sufficient with the wine to make 1–1/2 pint of gruel.
    "

    The precooking step of throwing the first water out? Most likely reduces what we now know to be antinutrients and FODMAPs. They didn't know that back then, but they didn't need science to tell them that sick people get indigestion from it.
     
    Last edited: Aug 11, 2017
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  19. Not dead yet!

    Not dead yet! Well-Known Member

    And here we go again. I found another infectious, and vague and supposedly "rare" disease that is being misrepresented online. It is similar to MSIDS/Chronic Lyme's and might have overlaps with painful forms of Fatigue syndromes and FM. It's yet another "diagnosis of exclusion." This pattern seems to fit too many similar illnesses.

    The definition: chronic osteomyelitis - chronic is clear enough.... then osteo (bone) myelitis (inflammation). Although myelitis often refers to the spinal cord being inflamed, in this case the reference is to inflammation of the bone or bone marrow, usually due to infection, but not always. Obviously this causes "bone pain" the unrelenting always there kind of pain that makes people end up on lifelong medication, and saps one's life force by continually interrupting the mind with messages of pain that one is helpless to stop.

    The very first neurologist I ever saw for migraines told me never to ignore pain because it will draw your life to a close by making you a zombie and pain "ignored" just sensitizes you to more pain, in his opinion. Ever since then, I've walked a thin line with doctors because I've basically needed pain control since I was age 26.

    Once someone experiences chronic daily pain with no obvious cause, then begins a familiar dance. Unhelpful doctors then tell you that you are "anxious" and "depressed" and give you antidepressants. Didn't work? Ok let's try benzos. No? OK, let's look for a cause, hmm, no obvious causes. Are you sleeping, maybe Ambien will help? No? Maybe you have Arthritis... did you know that losing weight can help with that? (Gee doctor, do tell, lol.) After a few years of this and the observation that you get lots of infections, more than the average person, you might be told... you're getting older, take better care of yourself. (Gee doctor, how much more should I spend on supplements and Whole Foods organics?)

    People leave one doctor and try another until they are shamed by the accusation that they are "doctor hopping." None of these doctors does anything different though and all of them put the blame on the patient, telling an obese person with continual physical pain and metabolic problems to "exercise more." The patient does so with limited success because at no time is there a cause found and treated. After about a decade of this, the person may become debilitated enough to ask for and receive disability. No problem has been solved, nobody was prevented from disability. Nobody seems to count up the human cost of losing your life to a continual feeling of malaise and physical pain. In the end, people blame "obesity" for this problem, and nothing is learned. (I think obesity is a symptom, not a cause.)

    Meanwhile, in academia, people have been discussing yet another problem that can be identified (by the rare doctor who's even heard the name "chronic osteomyelitis" and knows how to diagnose it), but often isn't. They identified it more than 40 years ago. It is still in the "academic" and "investigational" stage, and ordinary online sources call it "rare". However, academics think it is underdiagnosed. I always like to start with the obvious places when investigating something new I found.

    WebMD calls it "rare" yet we see below that it isn't really true that it's rare, just underdiagnosed. One reason I don't talk about ME/CFS on Twitter is that instantly every "rare" diseases organization tags me. It's not rare, it's misunderstood and deliberately ignored. So maybe I'm sensitive to the word "rare" but it can't be denied that it's misleading in the following description of Osteomyelitis...
    http://www.webmd.com/diabetes/osteomyeltis-treatment-diagnosis-symptoms#1

    Because the first thing I read in an academic journal is:

    http://pubs.rsna.org/doi/pdf/10.1148/rg.294085244

    "
    The term CRMO was first used by Probst
    and colleagues (3,5) and encompasses the typical
    clinical features of this entity: chronicity with a
    protracted course, involvement of more than one
    site, multiple exacerbations and relapses at old
    and new sites, and disease at sites that are typical
    of osteomyelitis in children. Although primarily a
    disease of children, it has been reported in older
    patients up to the age of 55 years (7,8). Since its
    original description more than 3 decades ago,
    several hundred cases of CRMO have been re
    -
    ported, likely owing to an increasing awareness
    of this disease. Because CRMO is a diagnosis of
    exclusion, it is likely that its actual prevalence is
    higher than reported in the literature.
    "

    That article describes a non-infectious form and how it can be seen in images. Now, how often do you see images of young children who are having "arthritis"? I had arthritis like that when I was a child, in fact that particular knee still aches up and down my thighbone in the same way, especially before a migraine. Nobody ever took even an xray of my leg. But I had a pass to put my feet up in class from a merciful school nurse. Even if they had, if my body is even partly capable of fighting the infection, it would never show up on anything less sensitive than an MRI. In my case it was dubbed "growing pains" but if so, how come it still hurts? I'm in my 40s!

    Although the previous article talks about children, the next article brings it full circle to adults also, and discusses the aggressive treatment of the infectious form.

    https://academic.oup.com/cid/article/54/3/393/304469/Systemic-Antibiotic-Therapy-for-Chronic

    "In the antibiotic era, chronic osteomyelitis remains difficult to treat and has a high rate of relapse after apparently successful treatment [2–4]. Indeed, case reports have described relapses of osteomyelitis up to 80 years after the initial presentation [5–8]. These relapses are probably due to bacterial evasion of host defenses by hiding intracellularly and as nonreplicating persisters within biofilm [9]. Because of these concerns, clinicians often treat chronic osteomyelitis with antibiotic therapy that is parenteral, high dose, and prolonged. This standard recommendation derives largely from the belief that it takes 3–4 weeks for infected bone to revascularize as well as from experience treating children with acute osteomyelitis. (clipped for length)...

    What have we learned about treating chronic osteomyelitis in the past few decades? Previous reviews of this topic have concluded that available literature is inadequate to determine the best agent, route, or duration of antibiotic therapy [13–15]. Undeterred, we set out to review studies published since 1970 in an attempt to address 4 fundamental questions regarding treatment of chronic osteomyelitis in adults: (1) Are certain antibiotic agents preferred choices? (2) Are oral regimens acceptable for selected cases? (3) For how long should antibiotic therapy be given? and (4) Is surgical debridement always necessary for cure? We searched PubMed and ScienceDirect for the term “osteomyelitis” from 1970 to 2011, and EBSCO, Web of Science, and Google Scholar for any types of studies on treatment of chronic osteomyelitis in adults. "

    Now call me kooky, but this sounds a lot like chronic Lyme's and like ME/CFS and like FM, and ... etc. These are too similar for anyone to tell apart other than an expert. I mean, how do you see a biofilm in an image? You usually don't unless you're looking for a plaque in a brain scan. By the time you could see this "bone infection" on a film, the bones would be mush. So again with this yet again similar definition of illness, we're looking at a faulty immune response that sometimes does work to protect us, and once in a while causes relapses when it is overwhelmed. Meanwhile, cytokine storms knock out our brain functions and we look like hysterical women crabbing obsessively about our health, fit for psych evaluations.

    I'm not overstating that, I've had 2 doctors refer me to psych eval simply because I seemed confused and paranoid about my health. To this day, the only widely accepted medical truths about me are 1. I have migraines and 2. I have far too many infections compared to the average person and 3. I have OA with associated Fatigue. While my doctor has indulged me by checking for viruses, technically that diagnosis is still in limbo.

    What's more likely to be true (more likely than hysteria) is that women's immune systems are understudied (lab rats are mostly all male for reasons of "standardization"), and different because we must carry the entire body of another human inside our own for 9 months. If our immune systems went on full alert about everything, we'd have to reproduce by budding or something. ;)

    That's not to say that men can't have these illnesses, but it does point out that if you're going to study cytokine fingerprints, you might want to check and see if the women's are different from the men's. Because a man's immune system isn't designed to allow a child to grow within. The existence of more "brakes" on a woman's immune system might explain why we get more autoimmune and inflammatory illnesses in general.

    Furthermore, if you discover later that the cytokine fingerprint of two "different" diseases are the same or very similar, consider that there are many similar definitions in medicine already. Many of them are somewhat infectious, many are persistent, and many cause pain and fatigue, often for decades. Maybe the most accurate definition of this syndrome is that it causes pain, fatigue and has associated immune dysfunction with an infectious component. And that it often gets better with anti-biotic/viral/parasitic/fungal treatment, and/or reduction in the cytokine reaction (Humira anyone?)

    Maybe it doesn't matter if I have an anti-collagen antigen found in RA, or anti-gluten one, or anti-viral antigen, or anti-bacterial antigens, or am "hypersensitive" to funguses, etc or if I am sensitive to the toxins released by nasty "bugs" (typohoid toxin, etc).. I wonder if we're splitting hairs too thin to really look for a solution.

    Look at all the people with Crohn's who are helped by LDN and all the people with chronic fatigue and pain similarly helped (knowing that research continues into cytokine fingerprints in fatigue syndromes identified variously as CFIDS, ME and CFS). You can verify for yourself if lowering TNF will help you... taking about 50 or more mg/day of DHEA will lower TNF even in teenagers. If it helps you, how come you can't go to the doctor and say, "hey, I know lowering TNF will help me, can we try Humira on me? Maybe it will give me back my life. Or maybe I will not be able to tolerate it and prefer the DHEA instead. But could I try it?"

    Why is the quality of my life less important than the red tape?

    This is the kind of thought that keeps me up at night, full of frustration. I know it's not healthy to ruminate about things I can't change, but I also have no solution for this. Given enough time, I could find all of the probably hundreds of fancy medical ways to say "vague infection that presists and causes pain and fatigue." But only those who are doing the research can actually connect these dots in a meaningful way. And even researchers can't force the medical system to remove the red tape so that I can find my way to wellness if a medical solution already exists.

    I think we need a new bill of rights. One that includes the right to seek effective health care without Clinical Practice Guidelines and other policy-baffles that tie the hands of professional doctors. One that respects the lives of patients and the patient-doctor teamwork that could exist if all the meddlers weren't baffling the attempts toward wellness. I think, instead of making it more expensive, it would slash costs as people got well and returned to constructive lives.

    Whew that was a bit of an opus... sorry it was so long. I just felt I had to say all that.[/B][/I]
     
    Last edited: Aug 13, 2017
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  20. Merida

    Merida Well-Known Member

    @Not dead yet!
    Wow. Wish we could get together and talk for a few days - or weeks. Yes, much of medicine is no longer looking for causes, but only drug therapy for symptoms. And that is not a bad thing, but somebody has to take the very big, ferocious "bull by its horns." So, I am hoping Stanford will continue to search.

    Yes, what you have gone through sounds like Lyme, Bartonella, Or Babesia or some organism yet to discovered. Try to watch that NorVect conference of 2014. Ha ! But word is that Stanford does not treat "chronic Lyme." Neither does UCLA. I called them.

    This whole liver dietary thing is very interesting. The one thing that seemed to help me was a Chinese preparation - a dark red- brown liquid in a little jar. The only English said " Asses Glue." What this really was was a preparation made from blood and hide. I did( don't) know about choline, but will read. So I ended up at the red blood cells and their ability to carry oxygen and release CO2.

    Are you Rh D negative? If you don't mind sharing? In one support group meeting 55 per cent ( of 15 or so people) were Rh D neg. including me and my son, and my Mom - all symptomatic. My daughter is Rh D pos and is fine, as is my husband. So the highest rate of Rh D is with the Basques at 35 percent. There might be other red blood cell surface proteins, like CE, that are also important. I suspect that the RHD negs may have different immune responses - especially the women.

    There is very little/no research on this. Flegr, as mentioned, did some.
    Also, a USGS biologist, Jeff Hatfield, did some. Can google his name and RH D neg. Hatfield thinks that the genes for Rh D neg are also controlling ( to some extent) left handedness, hair whorl, sexual preference, gifts in math/art/music. True in my family!!!!!

    The sexual preference is interesting. Our native Americans honored the people they called "two spirited." Both a male and female spirit in the same body, and often the greatest and most respected shaman and cultural leaders!!!

    Your growing pains. Hmmm. These are often implicated in tethered cord syndrome. I have actually been diagnosed with this by one of the few world expert neurosurgeons!!! So Tethered cord syndrome can encompass severaL structural issues : a short, tight, fibrous filum which attaches the cord to the inside of the sacrum. Or, some injury or infection that causes the cord to get stuck to the side of the dura somewhere along the neural canal.

    Also, tethered cord people often have very high arches and tend to walk tip toe. Think this is the reason for my huge bunions. ( not tight shoes!!!!)
    The tension on the cord is apparently transmitted all the way to the top of the neck. TC can remain asymptomatic until some sport activity - like high kicks or some injury. If the sacrum drops or rotates ( as it can do in women with wider, inherently less stable pelvises) then thus creates even more tension. Leg pain is certainly a consequence. But also, bladder and bowel issues are classic. Expert urodynamic studies are essential for diagnosis. Yes, I had them - lower motor neuron bladder here. But had to work with neurosurgeon to get correct, sophisticated studies with savvy urologist.

    I expect that this tension alters the blood brain barrier, and these people may have to have very active immune systems to stay alive? I had a terrible virus in 1988. ( 10 years before CFS) and got terrible asthma. After 2 years I left my HMO and found a doc with gave me a big shot of prednisone and then a Medrol disease pack. Plus cortisone inhaler. Asthma was totally gone in 3 months - never came back.

    Clinical guidelines. Bad situation. Several very respected Lyme MDs had their licenses suspended ( was temporary in the end) for listening to patients and retreating them after they relapsed. Dr. Richard Horowitz was one - and he is just a super special, great doc.

    Too tired to go on. This all all so important. Thanks again for your valuable insight.
     
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