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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Can you trace your illness back to about 1980?

Discussion in 'General ME/CFS News' started by Stormyskye, Jan 13, 2010.

  1. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    sudden onset march 29th 1984, felt like I weighed 500 lbs. nearing the 26 yr mark!
     
  2. shrewsbury

    shrewsbury member

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    Someone posted a Bill Cosby quote about the strongest reaction to aging being surprise. I have since found that idea echoed in many places. I'm sure you were mad George, but I bet you were also surprised each time you went to call her, then realized you couldn't. Maybe I'm projecting though; I still feel that way about my Dad after his earlyish (non-ME/CFS) death 10 years ago. (and I feel that way about ME/CFS too. Everyday I go do do something, think something, find I can't, and go 'oh - that's right - I'm sick - I can't do that'. It still surprises me.)

    You do twisted so well George (* big grin *)

    The original question got me wondering about figuring out generations and replication stages of the disease, and wondering when it was introduced into humans..... What odd interests this disease engenders.
     
  3. anne_likes_red

    anne_likes_red Senior Member

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    1984 was a big year.
    I have to say time flies....even when you're having cfs/me.
    Nice to meet you jimbob.
     
  4. Dreambirdie

    Dreambirdie work in progress

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    Acupuncture is extremely helpful. (I have had it regularly/almost weekly for about 20 years. I wish I could afford to do it EVERY day!) And... herbal and vitamin supplements, which I take about $600 worth/month.

    I've found that the adrenal boosters/adaptogens are the most important ones for me: ashwagndha, schizandra, licorice root, eleuthero, tulsi---which I rotate. I also use herbal anti-viral formulas, some store bought, others formulated for me by a TCM guy who has many years working with CFS.

    As for vitamins, the B vitamins (especially B5 and B6 are really helpful for me), as well as Vitamin C in large doses during active infections, multi-minerals (especially magnesium for nerves and heart symptoms), fish oil or and EPO for brain, cod liver oil for D vit., probiotics and Betaine HCl for digestion and gut issues. I am also using some bio-identical hormones and maca, for perimenopausal symptoms.

    I have learned how to do biophoton testing, in combination with Omura's bigital O-ring test, (per Dr Matt--the TCM genius), and test myself whenever I need to fine tune my many supp's.

    I have recently tried some of the B12 protocol (as per Freddd and Rich) and the Lauricidin for the viral issues. But these both chelated more heavy metals than I could currently handle processing. So I've backed off until I can handle the stress of detox again.

    As for diet, I am an all organic eater, and eat mostly vegies and proteins (meat, eggs, nuts, goat yogurt, some beans occasionally), goat butter, olive and sesame oil, and avocados--YUM! More raw food in warm weather and more cooked in cold. No more than one fruit daily. And hardly any grains.

    I used to have a VERY restricted diet back in the late 1980's, after being poisoned by my "dick-head" neighbor (those of you who saw the photo of his penis bushes know what I'm talking about). But now I can eat almost anything in moderation... as long as it's organic. Mostly tho I am pretty strict with my regimen, unless it's a special occasion.
     
  5. cfs since 1998

    cfs since 1998 *****

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    No, because I wasn't born yet.
     
  6. Wayne

    Wayne Senior Member

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    CFS in 1980

    Hi Stormskye, Hi All,

    I realized around 1980 that I couldn't seem to work out and maintain my normal good to excellent level of physical fitness. A couple years later, I got hit with a virus that had alll the hallmarks of mono. I never recovered.

    I worked very part time through the 1980s, taking extended periods of time off. By 1992, I decided to try a full time position because it paid well. It was extremely difficult and finally did me in after about 1-2 years. I never worked at a regular job again.

    Wayne

    P.S. Koan, I tried sending you a PM. Did you know your mailbox is full? :Retro smile:
     
  7. markmc20001

    markmc20001 Guest

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    like the handle

    hey cfs since 1998, bummer getting CFS when you are young, I was around 11 when I got it. Came down around 1984 I think. Time does pass us by with this disease.....I just try and live a little when I get a chance hoping I will get better, but it never happens for long.

    hang in there.
     
  8. Stormyskye

    Stormyskye

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    Thanks for all the replies here, everyone.

    Kathi - here's a hug for you (((hug))). That's quite a road you've been down. I lost 3 babies along the way. It's not easy.

    Islandfinn - "What odd interests this disease engenders." Isn't that the truth! Every angle of this illness piques my interest.

    It's way too late in the day for me to respond to each of you, sorry about that. All the responses here have been very interesting. It's good to know that 30 years isn't "it". Life goes on. I recently passed the big 50 which means it's about 30 years of "sick". Hell of a life. I'm not complaining though. I understand that "gift" as well as the rest of you.

    I read something recently that made me wonder about the life expectancy of us. I know it's shorter even though we look younger. For those of us that can trace sick for 30 years or so, you have to start wondering a bit about how long the body can function at messed up levels before the damage just does you in. I'm in a better spot than most. But still, that many years of damage must have a price. A lot of people don't make it this far.

    So, here's my next pondering.....

    How many of you can see symptoms of this mess in the people around you?

    I can see at least some symptoms in all 4 of my grown children and in my hubby. None of them has a full blown case of CFS, at least not by the current criteria. But some of the symptoms are there along with correlating illnesses common among us. I can also see symptoms in many friends. There again, not diagnosed with CFS.

    Just a side note... anyone watch Jesse Ventura and Conspiracy theories? It was interesting last week when they were talking about the "powers that be" wanting to reduce the world population. A "soft kill", it's called. Giving out poisons that will cause disease so you die later on. They mentioned the H1N1 shot specifically. And aspartame.

    Could this really be the world we're living in? While I've long thought that somebody out there knows exactly whats going on and is hiding it, it's a whole other thing to see it on tv, with documentation to go with it.
     
  9. starryeyes

    starryeyes Senior Member

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    Well if they are trying to kill off the population they're doing a bad job of it, slowly or not. They're not even close to keeping up with the population growth.

    Me - CEBV '85.

    This is a very interesting thread. Many of us got CFS in the '80s.

    No one close to me has ever had this. Only 4 people that I had met within a few years after getting sick had it. We all got sick around the same time. A friend of a friend of a friend that I met a few times and happened to live down the street from me, about 2 miles away, had gotten CEBV the same year as me. Our bus driver when I was a forest fire-fighter had gotten CEBV the same year I did. One other teacher at the school district I taught at had gotten CEBV around the same time as me. One of the night custodians at the school I taught at had gotten CEBV the same year as me.

    All of them had "recovered" like I had at the time and I never stayed in touch with any of them. We were all still very affected and all of us felt like we were living with an ongoing viral or retroviral infection.

    The towns were all northern towns near the San Francisco Bay Area or within a 3 hours drive.
     
  10. Stormyskye

    Stormyskye

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    Teejkay, I don't think CFS was/is a part of the plan to kill off the population, I suspect it was a test of some sort. Perhaps one of those German scientists brought over after WWII was given the blood of a person with "dropsy" and told to make a weapon. At least one of those scientists is a whistle blower and said he was doing just that kind of work for our gov't. Dropsy wasn't something he specified, I'm just pondering. He didn't name specifics. These were the same guys doing the work on Jews in the camps.

    There are too many secrets that the CDC, WHO, and our gov't are all in on.

    GMO foods are banned all around the world except here. Scientists in other countries railed against them because they change the human DNA. It causes massive system damage. Why are we still eating it? It's in tons of foods commonly eaten in the US.

    What is GWI? Somebody knows. And it's catchy. Families and even pets caught it from returning soldiers.

    Cancer is curable. They just don't tell you that. More patients die from chemo than the cancer.

    I can go on and on here but I won't. It's depressing.
     
  11. markmc20001

    markmc20001 Guest

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    on a sidenote....

    Just a side note... anyone watch Jesse Ventura and Conspiracy theories? It was interesting last week when they were talking about the "powers that be" wanting to reduce the world population. A "soft kill", it's called. Giving out poisons that will cause disease so you die later on. They mentioned the H1N1 shot specifically. And aspartame.

    when I first heard of the bilderberg group and illuminatti were trying to control the world. I thought BS. However, I may have a slightly different explanation, that adds credibilty to some of the conspriacy ideas and agenda, but with a twist that is doens;t make it seem so science fiction.

    Like if you read the site "infowars" there is some really cutting edge news. HOWEVER, credibility is taken away when they show the OBAMA joker face painting. I think there might be some truth to some of those theories and also some political agenda also; SO, do believe that there is a bilderberg group that influences world decisions? YES. do I think obama is the antichrist? NO. DO I think business is trying to make money off the swine flu pandemic(and making it maybe sound worse than it is)? YES. Do I think they are trying to kill people intentionally and thin out the population? NO.

    The bottom line is big business, special interests, is screwing us on a daily basis in the name of money and power. I think many governments are facist or worse, even if they pretend to "democracies" like in the US where lobbyists write our laws....
     
  12. oerganix

    oerganix Senior Member

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    CFIDS 1982-present; 28 years of Hell on Earth

    Summer of 1982 in San Jose CA. I got the "flu" and so did a lot of other people as evidenced by an overcrowded waiting room at Kaiser where I finally went hoping for some relief from the incessant vomiting even though there was nothing left to expel.

    I was a very physically fit person, healthy eater, no risk factors for illness of any kind. I had a job I loved and had been admitted to law school at Santa Clara University. Years previously, around 1967, I had had "mono" and presumeably recovered from it. (EBV titers tested at 600 times normal around 1990 when I was trying to figure out what was wrong with me.)

    I never fully recovered from the 1982 summer "flu" but was so determined, and started out so healthy that, by discarding bits and pieces of my life over the next 6 years, I was able to keep working. I had to drop out of law school after one semester in order to keep working and keep my house. I thought then that laying out a semester would give me time to get up to speed again, but it never happened. I first had to stop the hiking and backpacking in the redwoods that I had formerly done, then the jogging and biking, and dancing all night had to go.

    Friends with whom I had done those things fell away, not believing in me, as is so typical in this illness. Little by little I stopped everything else that wasn't work. Stopped going to symphony - couldn't stay awake long enough to enjoy it, couldn't sit still with the joint and muscle pain. Stopped volunteering with Planned Parenthood. Stopped political campaigning and activisim. Stopped everything that wasn't work. My job as a real estate appraiser for a major international bank took all my energy. Finally in January 1989 I couldn't even get out of bed. I had already been searching through conventional means for answers from doctors for 6 years and had only gotten the "you're depressed" BS. I had those usual conversations, ie: Doc: You're getting more fatigued because you've gained weight. Me: No, I've gained weight because I'm so fatigued I can't do much of anything I want to do. People who previously called me Superwoman began to tell me I was a malingerer or mentally ill, but had no answer when I asked them what they thought had changed me so fast and so mysteriously.

    So, I've been living in Hell ever since, in many ways. Ups and downs. Lovers and spouses loving me when I'm up, abandoning me when I'm down. Family more or less tolerant, indifferent or ashamed of me, but still "love" me because it's their duty.

    I lost my life without quite dying. I stopped looking outside for help or support about 10 years ago. Just came back to it when the XMRV news hit the fan and am so glad I found this forum, no matter how that all turns out!

    What I tried that didn't help: All the various hyped supplement routines that cost plenty and delivered nothing more than a few weeks or months of placebo affect, or no affect or bad affects. Antidepressants. Talk therapy ie, psychological counceling.

    I applied for disability in 1991 and received it almost immediately - for Depression !! (I believe that one reason for fast approval was that this took place in the state of Wyoming which had just lost a suit accusing it having too many refusals for disability that were later granted, they felt they needed to be more compliant with the law, at least while the higher ups were still watching.) So, every time I am medically reviewed for continuation of benefits I tell them I had CFIDS and I still have CFIDS and they ignore that, look at my medical records, sometimes send me to a psychiatrist for evaluation and find that I am still disabled.

    I found that Prozac helped with pain even as it didn't help with anything else, so I kept taking it, after trying around a dozen others. And trazadone for not being able to sleep was useful and helped some with restless leg syndrome until that help wore off. I had a new strep throat about every two months for several years until I discovered zinc, which knocks out the bacteria in the throat and helps keep it from coming back. Since I started taking zinc supplements I have not had strep throat. I lost partial hearing and gained permanent tinnitus due one of the many ear infections that followed the sinus and ear congestion that always went with the strep attacks.

    I also noticed that while taking antibiotics for strep I always felt better. So when I read about the Marshall Protocol, I set off in search of a doctor that would support me in trying it. Serendipitously, I was assigned to a shrink who happened to have.....ta da!...CFIDS! He couldn't do the Rx for the MP, but put in me touch with one who could and would. So, I did the MP for a total of almost 2 years, with a break in between because I was feeling SO much better. I went back to Thailand where I had taught English as a foreign language in the 70s and took an intensive course to get certified to do that again and hoping to stay there. Politics and economics put an end to that and I returned and went back on the MP until I was rid of horrible back pain, multiple chemical sensitivities and a few other symptoms, but without help for the horrible fatigue.

    What has helped me:
    Zinc and vitamin C supplements
    NADH (this is a type of vitamin B so maybe those who are helped by vitamin B would also be helped by NADH. If I could have only one supplement, this would be it. It makes all the difference in the world in the amount of energy and stamina I have. I take 10mg/day and take a sublingual tab just before walking or doing other strenous stuff.) (I also read somewhere some researcher's findings on why PWCs all usually alcohol intolerant and it came down to something to do with vitamin B. I am not alcohol "intolerant" but it takes about half as much to get me "loaded" as it once did. As a lover of wine, I appreciate what NADH may be doing for me in this way, as well as for energy.)
    CoQ10- I felt intuitively that this was something I needed and subsequent research has borne that out. Dr Klimas recommends it, for heart health. I take 200mg/day
    After finding NADH and CoQ10 I also had the good fortune of free massages for about a year and I feel those 3 together got me to a higher level of health than ever, since onset. I think the massage was a way of offsetting really bad, negative stimulus of noise, light and commotion with a really positive stimulus that helped my immune system function a little better.
    Diet: High protein, lo-carb works best for me. No sugar or refined flour, a lot of vegetables and fruit. Poultry or fish or dairy, no pork or red meat. Yogurt every day. Chocolate and capsaicin also help with pain and wellbeing. That is, cocoa in hot water, with milk powder and stevia herbal sweetener, no sugar. And chilis and jalapeno powder in a lot of dishes.
    Meditation for serenity and acceptance of the here and now, myself and the world I find myself in, and listening for clues to what this illness might have to teach me.

    Currently trying to add:
    EFT - tapping on acupuncture points to "erase" past traumas and present illness.
    LDN - will start that any day now, when the naltrexone arrives
    Reading "The Shaman's Body" by Arnold Mindell, for seeing illness as a message and for info on "erasing personal history" that is blocking the fullest enjoyment of the present.
     
  13. Dreambirdie

    Dreambirdie work in progress

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    It is no secret that we have been bombarded with a constant barrage of environmental toxins since the 1950's. Thousands and thousands of them released into our environment each year--many "grandfathered" in (don't you love that word!), and NEVER tested for human safety. Who knows how many of these have disrupted our immune, endocrine and nervous systems, and made us even more susceptible to the multitudes of mutating pathogens in both our natural and man-made world.

    At this point even the bees (tough troopers that they are) are suffering with Colony Collapse Disorder, :( from all these chemical disruptions. Fish are being born with both female and male sex organs...:eek: due in large part to chemicals in LAUNDRY SOAP. And frogs (a critical environmental indicator) are disappearing all over the world. :tear::tear::tear:

    It's a shame how stupid and destructive humans can be. Very sad.

    The ongoing "conspiracy" is greed and power. It's a disease more prevalent and deadlier than cancer.
     
  14. Dreambirdie

    Dreambirdie work in progress

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    Do no harm.
     
  15. Stormyskye

    Stormyskye

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    I read infowars too. I have mixed thoughts about much of this stuff. It's really hard to take it seriously at times. Since most of us can not, would not ever consider such horrors perpetuated on the world. But the holocaust happened. There are those that pursue such dreadful self interests. There's a money and power trail. And something else that seems to go much deeper and above the builderbergs.

    The best way to hide something is in plain site. Then laugh it off as conspiracy theories. People don't want to believe any of it. I don't want to. But more and more documentation continues to compile that says some of that stuff is true. I wish they'd pull the bulls**t stuff out of the more credible facts. But, I didn't believe those when I first heard them either. As soon as you say "conspiracy theory", people start rolling their eyes.

    Nurses and doctors continue to tell patients that mercury is no longer in vaccinations. I experienced this when my granddaughter was born. Some illness that strikes babies and moms while still in the hospital. They didn't have that illness in that facility but they insisted on giving them both shots anyway. I railed against it and lost. The nurse swore there was no murcury in the shot. I checked the manufacturers website when I got home. Sure enough. Mercury. Again, the truth hidden in plain site.
     
  16. Stormyskye

    Stormyskye

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    Dreambirdie - ***Do no harm.*** That has been my mantra while treating myself. Only tried and true, safe, nothing experimental, healthy, natural treatments. I refuse to be anyones guinea pig.

    Oerganix - let me know how you like the book. I've done some personal work in this realm also and find it has merit. Although, it's much easier to learn about and know about such things than it is to put them into practice daily and truly live it.

    Sidenote - I was already logged in and this site made me refresh and log in again. A fluke or an ongoing issue?
     
  17. Wayne

    Wayne Senior Member

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    Nadh

    Hi Oerganix,

    Thanks much for posting this information about NADH and your experience with it. I'm extremely alcohol intolerant and this just might be an indication that NADH might work well for me. I shall try it out.

    Also, I enjoyed your whole post. I always enjoy reading people's stories, and also some of their plans on how they expect to move forward. Almost all the things you have in mind going forward are things that I want to give a try this coming year. Your post here has given me a little spark of initiative. :Retro smile: Thanks.

    Wayne
     
  18. oerganix

    oerganix Senior Member

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    Stormyskye: Oerganix - let me know how you like the book. I've done some personal work in this realm also and find it has merit. Although, it's much easier to learn about and know about such things than it is to put them into practice daily and truly live it.

    Yes, I'm already finding that to be true, but it's true of just about everything. I'm about halfway through it and have already been able to lessen my negative reaction to noise, which is a huge problem here in Nicaragua especially at this time of year (a month of mortars and fireworks being set off day and night, sounding like a war zone). This author blends Taoism, which I'm already familiar with and quantum physics, which I find fascinating, with such as Casteneda's writings, all of whose books I have but never was able to actually get through them all, so it's just my "cup of tea". It has exercises at the end of each chapter and the whole book is probably more verbose than necessary, but I'm liking it. As a Taoist, I've long thought my illness has something to teach me, but wasn't able to get really detailed about "what". This book seems to be adding "tools" - so, we'll see... I also have 2 others by Mindell, to be read after I finish this one. (The Quantum Mind and Healing; and Earth-based Psychology")

    CFS/ME/CFIDS...whatever it is...seems to have knocked out my former two greatest strengths, the physical and the mental, and has harmed me emotionally as well, so what is left for me to work with is the spiritual. And I'm about to get into a chapter that purports to show one how to be a "shaman" in the city, not only in the wilderness, etc.

    Care to elaborate on what you've done, or found helpful? PM me if you don't want to help me further hijack this thread, ;-). Or maybe we should start or join a thread in another forum...
     
  19. oerganix

    oerganix Senior Member

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    Wayne, I'm already following/participating in the LDN thread elsewhere here, so join us there when/if you get around to it. There's also an EFT thread, where I got turned on to that possibility.

    Best wishes for the New Year. I really feel it will be a much better one, one way or another, than last year.

    Edit: It takes at least 6 weeks for NADH to reach maximum effectiveness and then it gets a little better for another 4-5 months. A good source is http://www.nadh.com/ and I use the Enada type.
     
  20. Stormyskye

    Stormyskye

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    Hijack away, not a problem for me. Conversations take natural twists and turns. But I'll look for that other thread mentioned above too. Always happy to discuss personal spiritual changes. Such a fascinating realm.
     

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