1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Do you work / have career?

Discussion in 'General ME/CFS Discussion' started by RedLineBoy, Jul 26, 2013.

  1. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I do not like to be negative, but people with ME/CFS often get worse. You cannot count on having the cognitive (and physical) capacity that you have now into the future. If you were a nurse or a PA, a 'brain fog moment' could have a negative effect on another person's health and life. I think you should remove them from consideration.
     
    taniaaust1, Tally, LaurieL and 3 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    Actually that sounds more like orthostatic intolerance than ME/CFS. A difficult to diagnose form is Neurally Mediated Hypotension, which can hit after hours of being upright too long. Laying down for a bit, usually in the early afternoon, can help a lot, as can sitting with your feet up.

    Without PEM, you don't have typical ME/CFS according to the proper definitions.
     
  3. RedLineBoy

    RedLineBoy

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    My issues started when I was 19 after contracting mono. I never ever felt the same afterward. In six months I was already feeling fatigue and whole bunch of symptoms. My doctors tested me for everything. I even went to Infection Disease doc who did his work up along with my naturopathic docwho said I have CFS after his analysis of my immunological panel.

    Something about my NK cells didn't add up to him. Finally, all test kept coming back negative except CMV and EBV with a very high titer. This lead to conclusion of my doc to say I have CFS.

    Basically I was told to live with it. I will have good and bad days. That is all I was told. I was not told that I will be financially ruined, my dreams will be taken away from me and my life will be just living hell.

    How can well suffer this none sense crap and there out to be no cure. It is also mind troubling that two viral infection can cause such enormous stress on the body.

    I will take to my doc about orthostatic intolerance on upcoming visit and see what he says. But, wouldn't intake of salt result in cure if indeed I have orthostatic intolerance ?

    After reading much into orthostatic intolerance It is also said that is cause by mono.

    Do many of you have CMV and EBV?
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    RedLineBoy

    When you see your doc, ask about a Tilt Table Test--one designed specifically to show abnormalities in the autonomic nervous system response. Those of us with OI get very abnormal results on this type of Tilt Table Test.

    OI is often helped by higher intake of a natural sea salt like Celtic and added fluids and electrolytes, but it definitely doesn't cure it as the causes are usually in the autonomic nervous system and the brain. We also have low blood volume (which can be tested).

    There seem to be many possible causes for OI and some of us have found that our OI has improved with immune system and/or viral treatment.

    And yes, many, many of us here have CMV and EBV with high titers. But there are plenty of people who aren't sick who test high on these viruses too. It is a very complex syndrome.

    Since you weren't offered any treatment, maybe you should look for a more knowledgeable doctor as there are doctors treating this who are getting improvements in a good percentage of patients. But there are very few of these doctors who have devoted their careers to researching and treating this syndrome. Often you would have to travel to find one.

    Best,
    Sushi
     
  5. Tammy

    Tammy Senior Member

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    Your body is already telling you that something is wrong...........if you decide to switch jobs/career..........I would NOT go into Healthcare ................I was an RN........way too demanding. Choose something that is not so demanding mental or physical wise..........whatever you choose may not be your dream job......but.......we are talking about your health........and nothing is more important. At this point I would not push the envelope...........many of us here did that and it resulted in disaster. In fact if you can............I would try and decrease the hours you are working now.......I think they are already over 40? Please, I can't reiterate this enough.........DO NOT PUSH THE ENVELOPE.
     
  6. Lala

    Lala Senior Member

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    Everybody has EBV, 95% of population is positive for that. Many have CMV too. I was initially negative for everything like you except for few viruses like EBV and I was tested again and again by standard doctors. Only after I did more detailed and realiable tests like LTT for lyme, tests for chlamydia pneumonia, mycoplasma pneumonia, bartonella and detailed immunological panel, I was suddenly positive for all of them and I was diagnosed with severe immune deficiency. This severe immune deficiency was corrected by longterm antibiotic treatment despite the fact standard doctors told me it was genetic problem and it will never be ok. So, just an example...
     
    taniaaust1 likes this.
  7. SOC

    SOC Senior Member

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    That is a common pattern in ME/CFS. Low NK cell number or activity and high titres for CMV and EBV is a bad combination. High titres could mean active CMV and EBV -- chronic mono.
    You need a better doctor who knows something about ME/CFS. You don't have to live with it, but you may need to travel to find a specialist who can treat you appropriately.

    There are ME/CFS specialists who will likely treat your CMV and EBV with potent antivirals -- which most non-specialists will not do because they don't understand the illness.

    If you're willing to mention roughly where you are -- UK, Southeast US -- someone might be able to suggest a specialist in your general area. Many of us have to fly to other parts of the country/world to see a good doc, though.

    It might help in some cases of OI, but by no means all. Lots of us need a lot more than an increased salt intake. Try reading this. http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing

    Everybody has latent herpesvirus infections like varicella (HHV-3), EBV (HHV-4), CMV (HHV-5), HHV-6, and others. The big issue is whether it's active or not. With a NK cell dysfunction and high titres for CMV and EBV, it is likely you have active infections.

    And yes, many of us have (or had) multiple active infections. My daughter and I had active HHV-6 and EBV.

    This might help you learn more about immune problems and infections in ME/CFS.
     
    ahimsa likes this.
  8. atoska

    atoska

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    Lala hello!
    Did you improve after treating all those infections that came up with LTT testing?
    thanks!
    Andrea
     
  9. Tristen

    Tristen Senior Member

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    RN (Registered Nurse). Able to work intermittently for about the first 12 years with me/cfs.....been off completely unable to function at that capacity for 10 years now. Bed bound severe me/cfs 4-5 years.....Thanks to a few great docs, I'm now back at mild-moderate level this last 4, but still no way could function as an RN. I have filled my life primarily with the drive to get well. Have grown very tired of that quest, but it's got to continue because improvements are still possible.
     
    ggingues, SOC, golden and 2 others like this.
  10. Lala

    Lala Senior Member

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    yes
     
  11. Lala

    Lala Senior Member

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    Which type of treatment did you have, Tristen?
     
  12. RedLineBoy

    RedLineBoy

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    I think I figure that I may have an active infection. I live in PA, and at the moment I can not afford to travel to different country or states to get a treatment.

    How can anyone get a decent treatment if you don't even have insurance coverage to begin with. How is that many of you are able to not work and get insurance?

    I can not at the moment qualify for any government aid as I currently make decent money, but my current insurance is not so good.

    So far I notice what keeps me going is: CQ10, L-Tyrosine, Alpha Lipoic Acid, Acetylcarnitine. It gets me through the day, but not with cognitive issues. During the day I still get dizzy spells.

    How come the stupid virus is active in me and not in 95% of the population. I just can't buy the face that I have rare genetic causing the virus reactivate. This is utterly crap. I'm sorry if I sound pissed because I am. Why is that I'm the one to come down with this virus.

    I'm only 29, how am I suppose to live next 30 years, like this?
     
  13. PennyIA

    PennyIA Senior Member

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    I am still undiagnosed officially... but being a single working mom, I've been battling dealing with continueing to work as a computer programmer. My work isn't physically challenging, just mentally. I've spent about four of the last five years being virtually bedridden. I would get out of bed about 20 minutes before I had to leave for work and get dressed, do about 10 minutes of cleaning while waiting for the little one to get ready and keep the house from falling down around my ears. I'd have a rough day at work, followed by getting home and having about five minutes worth of energy to walk the dog, heat up a meal in the microwave and go lay down for the rest of the evening.

    To be honest, though - even though I think I'm working at about 50% speed mentally? I must have been a lot smarter than I realized before this condition.... as folks in my office still think I'm pretty sharp. But, I can spend hours at a time staring blankly at a task before figuring out that I'm not doing anything and so much time has gone by, sigh.

    Thankfully, methylation treatment really has helped tremendously. I'm not at 100% by any means. But I had a couple of months where I thought I was at about 80% and now, I'm slipping down to about 70% again. Still haven't figured out how to turn that around.
     
    taniaaust1 and Ema like this.
  14. JT1024

    JT1024 Senior Member

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    One healthcare job you might want to consider is an ultrasound technician. With only and associates degree required, the job outlook and salary are pretty impressive. I just found some information on this website and for PA, the salary is listed at $56,000. Given educational requirements for other healthcare fields, this looks like a great option.

    http://salarybystate.org/healthcare/ultrasound-technician-salary-by-state
     
    taniaaust1 likes this.
  15. Tristen

    Tristen Senior Member

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    Everything under the sun over the years.....but what has brought me back from that severe abyss was IV AV Tx with Vistide through 2009.
     
    vli and Valentijn like this.
  16. Tristen

    Tristen Senior Member

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    About what Nursing pays, yet with a bazillion times the responsibility and stress. Used to thrive in that enviro.....can't do it now.
     
    overtrain likes this.
  17. SickOfSickness

    SickOfSickness Senior Member

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    Unfortunately most people with ME/CFS decline. Anyone who is still doing ok should train for a job that they could do part-time. Best would be a job from home or with flexible hours. Many employers won't take part time employees, and you would need one that allows part-time, in case you cannot do more. Most of us pushed through and ignored the fact that we crashed and barely kept up. In the short term you can do more than your body is capable of. There is a long-term price for it.
     
    taniaaust1, Tally, peggy-sue and 4 others like this.
  18. RedLineBoy

    RedLineBoy

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    You sure you have CFS? The reason I ask is because there is no way you can be a software engineer and have CFS. Software development requires so much cognitive abilities and ability to remember is just insane. Not like health care where you just remember facts and that there is only one right answer. Software requires tremendous amount of thinking requiring your to solve business problem from scratch.

    Anyway, I will look into methylation treatment see how that works out for me.

     
  19. WillowJ

    WillowJ Senior Member

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    I think it would make sense to talk to a career counselor or disability counselor, maybe at your college/university.
     
    Little Bluestem likes this.
  20. golden

    golden Senior Member

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    I recall at school a career counselling session. I said I wanted to work with animals.
    They suggested being a Taxidermist !

    I wreckon the illness calls for some lateral thinking on career. the bog standard suggestions may not be the best.

    Having said that , I am currently trying to solve my financial crises too.
     

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