In 1980 and 81 had several bouts of very bad flu with sore throat, temp etc. Then when pregnant in 1982 came down with odd flu-like illness - complete exhaustion, tachycardia, fluey feeling, but no temp or sore throat, and in bed for 3 months. Since then regular relapses lasting 2-9 months, but a long period of 95% well between 1994 and 2002. Now relapses are worse with more neurological symptoms, much more pain and much more severe 'malaise' (never thought one could feel so illl and still be alive).
Treatments too numerous to mention - probably tried over 40, from colonic irrigation and cold water hydrotherapy to complex combinations of antibiotics.
I got ill in the fall of 1979. I then found out I was pregnant (4th child) and didn't realize just how ill i was for a few months. But my son was born early and had birth defects and by then I was flat out sick. Found out later I'd been exposed to pesticides - organo phosphates - from living too close to a grove that was sprayed by air. That was my first Dx. However my symptoms also quickly became MCS, which also didn't exactly have a name at the time. It wasn't until 1989 that I finally had a name that explained symptoms that were beyond what other's I met with MCS had, CFS tho it was called CEBV at that time. My middle son came down with CFS/FM the same year I finally got dx'd with CEBV but he didn't get the dx for a couple more years. he was 16 at the time... [see my story under the intro section]
Treatments: Myopractor (sim to chiropractor but better IMHO ), detox, juice fasts, herbs, suppliments, homeopathics, chiropractor, oral chelation, avoidance of things sensitive to -foods, chems etc.
Reg MD stuff never did a thing. Myopractics and suppliments didn't cure me but I do think it helped me keep from getting worsel I think... but haven't been able to afford that in recent years and I have gotten worse in some symptoms ie pain level... or is that getting older? LOL Nope. My older friends do not get these symptoms!
**biggest help was the invention of home computers and the internet--being able to met others who are also ill and sharing notes, info, kindness and encouragement and knowing one isn't the only one! because that helps with sanity and coping ...and we all know how stress affects this illness ? !
Side note - my son is still ill too but he is much better than he was in earlier years. Could never call our lives normal by any means...
I feel for you and can relate. I was poisoned by a neighbor's spraying in the late 1980's---tens of gallons of penta-chloro-phenol on his fence to kill termites. Now this crap is banned, but that was too late for me. I spent close to a decade as a universal reactor, with severe MCS... absolutely hellacious.
I have found TCM to be the most helpful for that aspect of my illness. The Chinese herbs I got/get from Brion/SunTen help me move toxins out of my system. And acupuncture is a relief as well. I'm hoping that the B12 regimen (Rich's protocol) which I plan to try when I get stronger, will also be helpful.
Remember being sprayed from the air for Med Fly in CA?
I was a real estate appraiser and I sometimes had to work inside houses that had been "tented", covered with a huge plastic tent, and sprayed with penta for termites. One of the few men in one support group I used to belong to had been an "Orkin Man" - spraying houses for cockroaches, etc. and for termites. When I lived in government housing, we had to allow monthly spraying for cockroaches, whether we wanted to or not. Organo phosphates all over the place.
My MCS disappeared after doing the pulsed antibiotic protocol called the Marshall Protocol. Can't say why, but it did. Maybe without the bacterias my immune system was able to recover enough to repair some of the damage of toxic chemicals.
Very interesting, everyone. I suspect that those environmental poisonings are one of many triggers for illness. They cause damage that leaves one open to attack. The body becomes unable to fend off things that normal peoples immune system can handle.
The body is always in a state of repairing itself. If you cut your finger, it's going to heal. Same applies to the rest of the body. It's a matter of giving it the tools it needs to be able to repair. The tools for rebuilding. The way the body was meant to rebuild itself. This is where what you eat comes into play. The most nutrient dense food, supplement or whatever, that you can muster up. While XMRV might well be a factor is CFS, it isn't going to be found in everyone, just like CEBV.
The average person takes in more garbage (from food and environmental toxins) than "tools" (nutrients) to fix them. When you change the ratio, healing begins.
Some aspects of the illness are catchy, some inherited damage to DNA at birth, some accumulated toxins along the way. All of it is repairable though, even the damaged DNA. A genetically modified field of seeds will morph it's way back to the original form over a few years. This is why farmers are not allowed to harvest their own seeds and replant them, they will revert back. DNA "remembers" what it was/is/should be. Yours does too.
To answer your second question first: The aerial spraying for Med Fly, a threat to Calif. citrus, happened in the late 70's, I think. My encounters with tented houses happened from around then through 1988 when I was no longer able to work. I met the "Orkin Man" in the early 90's in Oklahoma.
No, I"m not all better, not at all. I feel like I'm losing some of the gains I got from the MP antibiotic protocol, which I did not finish. Some of the back pain is returning. I'm still free of MCS.
I'd estimate my level at about 35, down from 40 recently, using the Bell system:
•40 = Moderate symptoms at rest. Moderate to severe symptoms with
exercise or activity; overall activity level reduced to 50%-70% of
expected. Not confined to house. Unable to perform strenuous
duties; able to perform light duty or desk work 3-4 hours a day, but
requires rest periods.
•30 = Moderate to severe symptoms at rest. Severe symptoms with any
exercise; overall activity level reduced to 50% of expected. Usually
confined to house. Unable to perform any strenuous tasks. Able to
perform desk work 2-3 hours a day, but requires rest periods.
Part of my regression is, I think, related to life in Nicaragua, which is very noisy. For the whole month of December they celebrate Purisima (Catholic holiday celebrating the Virgin Mary's non-sexual pregnancy) by exploding mortars (bombs) and fireworks night and day, extremely loud amplified music, parades with loud drumming and general drunkenness.) It's Carnival combined with summer vacation for the schools, so a lot of young men have nothing better to do. The noise is horribly overstimulating for me, causing dizziness, headaches and increased fatigue. I try to stay home as much as possible. Loud noise is a feature of everyday life here, but much worse for the month of December, which is, thank Quan Yin, over for this year. There is also a lot of smoke in the air much of the time. These two features of Nica life are my challenges at the moment, to emotionally accept them and be grateful for the good aspects of living here, which are many. I moved here because my disability check was just too small to cover heating bills that were sometimes more than my monthly income, the insurance and repairs for a vehicle which I had to have to drive the 90 miles to the only doctor who would take me seriously, and the overall high cost of living in the US. Here, I have warm weather all year and very cheap public transportation. (A taxi anywhere in town costs about fifty cents. A bus costs about five cents. A bus to another town costs about one dollar per hour of travel. A fancy air conditioned bus to Costa Rica, where I just spent a couple of days renewing my visa, costs about $48 round trip.) Routine health care here is free to everyone, Nicaragua being one of those horrible socialist countries, ha ha. Private care costs about 20% of US costs. My private Nica doctor makes housecalls for $15, but doesn't charge me anything because he is a friend of my companero. Many prescriptions are cheaper, some not even available, but all are over the counter, no Rx needed. Fresh vegetables and fruit are available all year and locally grown. Imported stuff is available, such as apples, but I don't bother with them when I can have mangoes, papaya, bananas, watermelon, cantaloupe, pineapple, etc. It's also cheap and easy to pay someone else to do all the "hard" stuff here, like cleaning, laundry, shopping, paying bills, etc. I have had the good fortune, too, of having a good man find me and insert himself into my life as my guardian, caretaker and champion, when I need those. Heaven knows, I wasn't looking, but he found me, another thing to be grateful for. He's also teaching me Acceptance and how to be happy with life that is not how you imagined it would be. In another 5 years he will retire, he is a primary school teacher, and we will move to a quieter town. At least that's the plan right now.
What I still have is terrible fatigue, PEM, joint pain, especially in my hip joints, tinnitus, and a whole host of neurological stuff including brain fog, short term memory loss, migraine like auras with not much pain, emotional lability, weight gain and no energy and hypersensitivity to noise and motion. Headaches were never one of my main complaints but have been increasing lately.
Sorry if this is too much information. I guess I should have put it all in my personal profile. Maybe later.....time for a nap in the hammock.
Bottom line, I really intuit that the manifestation of ME/CFS takes at least three things/assaults/aspects. For instance, the EBV I had in the late 60s, the chemical sprays in CA in the 70s-80s, then the XMRV or something else, in the 1982 summer "flu" in San Jose, as a possible one two three punch for me personally. There are other possibilities, of course.
Stormyskye, the main reason farmers are not allowed to replant their own seeds, or sell them as seeds, is because Monsanto wants total control of that market. Genetically modified seeds do not revert back, at least not any time soon if at all, and Monsanto does not want their patented plants to be used by anyone else. I come from a farming family and have followed this for a long time. Farmers have been successfully sued for allowing seeds that fell on the ground to grow, and for planting their own saved seeds by mistake. It's corporate greed x 100.
I wasn't going to go into the whole Monsanto thing that just makes my blood boil. I've got a really great video on this whole GMO thing and it's just shocking. The money and power and control at the cost of many lives and our health. Anything labeled organic in this country can't have GMO in it. I buy that whenever possible.
The seeds will go back eventually, but not in a Monsanto/pesticide treated soil situation. It takes years though. Here again the seeds need the right nutrients in clean soil to do so. But they will retain some of the newer inserted DNA mess for many generations. I don't have personal farmer experience with this, it's what I read and watched on the video.