CFS and Genetic Susceptibility

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jan 18, 2007.

  1. Slayadragon

    Slayadragon New Member

    I had always thought that the reason I got sick was because I had not taken good enough care of my body after my head injury. (I "came down" with the viral illness that started my CFS a year later.)

    However, a couple of years ago, I got genetic testing for several immune system genes.

    My doctor said my profile was amongst the worst he had seen (and all of his patients are very sick), and that he therefore believed that I would have become sick under normal life stress at some point soon after (as I got into my 40's) even if I hadn't come down with it at that particular moment in time.

    This suggests that if I ever do get well, I'm going to have to _extremely_ careful to avoid both physical and emotional stressors for the rest of my life. If I don't, the possibility that I might slide back into illness seems pretty great.

    I think that the genetic component of this illness is an extremely important one. I'm thus surprised that it's not discussed more often.

    If nothing else, close relatives of people with CFS may be well advised to be careful regarding stress.

    My brother and my grandfather both have/had CFS, for instance.

    If I had kids, I definitely would get them tested genetically for the illness. If it came up as problematic, I would want them to be really careful to avoid stress too. Many stressors are avoidable.

    Of course, some stressors are not avoidable. And most kids don't listen to advice like that either.

    Another possibility would be to proactively give antivirals (if antivirals are indeed effective) whenever a major stress like a head injury occurs. That's something that I will consider, if antivirals do indeed make me well.

    In any case, especially since at least some kinds of CFS appear to run in families and since genetic testing is available, I don't understand why people aren't paying more attention to this component.

    [This Message was Edited on 01/18/2007]
  2. NyroFan

    NyroFan New Member

    It is very interesting that high stress could cause CFS.
    I sometimes was ver leary of that idea, but the proof is in the pudding.

    nyrofan
    [This Message was Edited on 01/18/2007]
  3. Slayadragon

    Slayadragon New Member

    My insurance paid for the test without any questions at all.

  4. Slayadragon

    Slayadragon New Member

    As of yet, I have seen no evidence on this board or heard any theories that either genetics or acute stress cause fibro (which is either a subset of CFS or a different disease).

    It's the sort of CFS that starts off with the "killer" flu that I'm talking about.
  5. NyroFan

    NyroFan New Member

    lisapetrison:

    I believe you are right. I keep an open mind, though.
    I appreciate you setting things straight.

    nyrofan
  6. Gretchen12

    Gretchen12 New Member

    Hi Lisa,

    Yes, I do believe that we have genetic susceptibility to this disease. Looking back, I know that my mother and aunts (who are now dead) had CFS.

    In my case, I had been under tremendous stress for over ten years before I finally broke down completely. A
    bitter divorce, a very streesful job as a bond trader while trying to put my daughter through medical school (my ex reneged on the payments), then 9/11 and I lost many good friends and colleagues who worked at Cantor Fitzgerald in the World Trade Center. In the spring of 2003 I came down with a very bad sinus infection and was desperately sick for several months--finally ended up in the hospital for a week.

    I was misdianosed with polymyalgia rheumatica and temporal arteritis and put on heavy doses of prednisone. I can remember there were times I did not sleep for 4 days at a time because I was so wired on this medication. I pushed on for over a year, taking prednisone, because in 2004 my father had a massive heart attack and as an only child I had to take care of everything. While he is now in a nursing home, I am still responsible for all of his needs and have to manage his finances as well as mine.

    Finally, I had a temporal artery biopsy which came back negative--I had been misdiagnosed and had taken prednisone for over two years by this time. My own adrenals were completely shut down. I had to taper off the prednisone slowly, but I don't think my adrenals have ever fully recovered.

    My doctors now believe that I have CFS, but just don't know exactly what to do about it.

    This is the reason I am so interested in adrenal support.

    I stayed up way too late again last night reading the wonderful thread where you and Dancingfingers (sp) and others discussed this among other things.

    I can honestly say I have gotten more information from all of you than from my doctors.

    May I please ask you another question? I want to start trying DHEA immediately. Do you think 10mg would be OK to start? Also, how about pregnenelone? Also, what is DLPA?

    I'm trying to research all of this and you have been so helpful.

    Another thing, I have orthostatic hypotension. My blood pressure is quite low as it is--95/65, and when I stand up it drops dramatically to 60/45 with a corresponding increase in pulse rate to compensate for the drop in pressure.

    I will check back with you later. Hoping for a reply from all of you who have these problems.

    Thanks so very much,

    Gretchen
  7. yellowbird

    yellowbird New Member

    They only figured out the genetic link for CFS in April, there isn't really a test yet for it yet, though they are working on one apparently. Presumably the "genetic testing for several immune system genes" you had done is not standard practice?

    I also find it weird that people on this board are often expressing their opinions about the'cause' of CFS (...chemicals! ...hidden anger!) when it's now clear what a huge role genetics play. I guess the CDC's campaign hasn't reached everyone yet.
  8. woofmom

    woofmom New Member

    The reason some of us blame these diseases on chemicals is because we got sick after exposure. I believe genetics plays a part. But, just because I have a gene that may contribute to this doesn't give the chemical industry the right to poison me. It's kinda' like pouring raw sewage on an open wound.
  9. lrgatplay

    lrgatplay New Member

    If breast cancer and heart disease can run in families, so can other genetic abnormalities. If they are abnormalities.

    In our case, I now see that my son has been having problems for a while, and with what I know now, maybe I could have prevented this by proactively changing his diet and more closely watching what I was allowing the doctor to treat him with. His father has recently had two shoulder surgeries and now has a pinched nerve in his back. So Jordan may have gotten something mixed from both sides, not just me with the myasthenia. My other son has a different father, and inherited nocturnal inuresis from that side.
    He also has had some unusual things here lately, so I am watching him. And we are all modifying our behavior.

    Of course, the stressors play a part and circumstance.
    Maybe if he had not gotten the West Nile bite while on the antibiotics and steroids, we would still just be dealing with chronic sinus and allergies. Seems like there would at some point be a trigger for everyone unfortunate enough to have the genetic disposition.

    I would like to have the genetic testing done. Just to see what they find. But don't need to have it done to know it.

    It is hard getting the kids to cooperate with the changes we're trying to make.

    Take care everyone.
    LISA
  10. springrose22

    springrose22 New Member

    I think that the genetics component of CFS is more a genetic predisposition than a sure fact. Did I say that right? In other words, if you have the right genes (or wrong), you are more likely to get CFS if all the right (or wrong) factors fall into place for you: stressors of all kinds - stress hormones, traumas, toxic chemicals, etc., and then, finally, when you are in a weakened condition, a virus or bacteria comes along and finishes you off!

    Lisapetrison, another great thread. Marie
  11. Gretchen12

    Gretchen12 New Member

  12. Slayadragon

    Slayadragon New Member

    I've had a bad headache all day and so will have to read your post over again to absorb all of it.

    However--that's quite a drop in terms of your blood pressure!

    Mine does that too, but not nearly so dramatically.

    My blood pressure has been as low as 85/55 at times, and I have felt horrible as a result. That kind of large drop you get is supposed to be even more debilitating. I suspect if you could fix that one thing, you'd feel much better.

    The reason that blood pressure tends to be low for many of us is--yes--low adrenal function. The adrenals don't pump out enough aldosterone and therefore there's not enough water in the cells. (Diuretics do the opposite--remove water from the cells so that blood pressure can drop.)

    i only really know about how to raise blood pressure in general. It would be interesting to see if this takes care of that drop as well.

    Options:

    * Lots of salt. Try adding a whole teaspoon (plus whatever's already in the food and liberal use of the salt shaker) and see what happens. If you're going to do this anyway, you might as well use sea salt to get the minerals, if it doesn't cause you trouble to go buy. Otherwise use regular salt.

    * Licorice. I had never used anything except capsules before and never got much of a response. dncgfngrs post recently about the response she got from all the licorice tea was interesting. I thought it was weird that she got a herx and detox from it, and so caution is advised. The kind she used--cut licorice, I think she said?--might help with the blood pressure (and adrenal function in general) though.

    * Florinef. This is imitation aldosterone, available through regular pharmacies. The regular dose is .1 mg. I have taken .2 mg for some periods in my life. It's not terribly effective---even with .2 mg, I was unable to get my blood pressure higher than 105/65 at some points in my illness. It works better when you're also taking salt.

    If your blood pressure is that low, I tend to think your adrenals probably are in very, very bad shape. I would do anything I could to get that DHEA/cortisol test done. Let's see if we can get Forebearance to give us the saliva test company name.

    I tend to think that you might feel better right away if you took some DHEA.....it only took me two days to feel a huge difference. With those blood pressure numbers, it might indeed be worth a trial of 10 mg or so for a couple of weeks to see if it makes a difference.

    Personally, I'll try almost anything for a very short period of time to see what happens unless I'm able to find a reason not to do so. Obviously you're not going to have the danngerous blood pressure spikes that Jolie got on it, which is the main thing to worry about with it. There could be some other negative effect of DHEA that I'm missing, but it would have to be pretty rare.

    DHEA needs to be monitored since it's hard to predict whether someone needs it, and so I wouldn't use it on an extended basis without testing. I always thought that, but Jolie's experince has scared me a bit. (Which is not to say that I think it should be prescription item since so few doctors know anything about it---and since a doctor actually was the one who gave that stuff to Jolie.)

    Considering how unhelpful your doctors seem to be (from your profile) perhaps experimenting and then getting your own test done or presenting it to them as a fait accompli might be worthwhile. I'd consider bigmama2's doctor too.....dhea is not that hard to measure and advise people about, if you have any training and intelligence at all.

    I'd tend to think starting with the salt would be a good first step though. Whatever effect you get should be pretty immediate. That and the DHEA should be done separately to see what response each gives you.

    I'll come back to your post later when I'm not quite so out of it. If you do try the salt, please report back and let me know how it goes.
  13. bigmama2

    bigmama2 New Member

    I do believe that there is a strong genetic component in CFS for many poeple, (but not all). Take me for example- my dad is very healthy except he is very sensitive to chemicals and has allergies. My mom is prone to tiredness, depression and not being able to handle stress.

    I of course got all of their negative health issues, but mine are more severe. Add in asthma, severe insomnia, irr.bowel,etc etc and that's me! As a child I was always at the Dr. office for my asthma, allergies, bronchitis, etc. I took alot of antibiotics in my youth.

    My only sibling is also screwed. He had a nervous breakdown at age 25 and has not fully recovered now 5 years later. He has been on just about every anti depressant ever made and none have taken away his depression. Even all of his psychiatrists can't agree on his diagnosis. It's such a shame because he is a really nice person who doesn't deserve to suffer as he does. It's a mess. His symptoms are very CFS like but he just doesn't want to think that's what it could be.

    By the way my CFS started at age 25 triggered by an extremely stressful job. I am now 37.

    My poor parents. They have 2 nice adult kids who are basically non functioning. It's very stressful on them, but it's worse on me and my brother bucause it is OUR lives.

    We like to joke that when our parents "got together" it was a toxic combination that created us. So I do believe genetics are involved. I would love to get some of those genetic tests.

    Bigmama2

  14. bigmama2

    bigmama2 New Member

    hi everyone!

    I've been posting alot lately about the Adrenal Stress Index saliva test I got done thru Diagnos Techs labs. I ordered thru clymer healing center website for $160.00 and it included a 20 min phone consult w Dr. Neville (who I actually liked and found helpful).

    Also google Diagnos techs labs. they have good info about this test, which they say they developed.

    Please check it out!

    Also good info on adrenal fatigue on several websites--
    dr rind, dr wilson, and some others I can't remember.

    Books on subject- Adrenal Fatigue the 21st century stress syndrome by dr wilson is excellent!! Feeling Fat Fuzzy and Frazzled by Dr Shames is good also and includes thyroid and female sex hormones as well.

    Remember that Amazon or Ebay frequently has books at low prices!

    Bigmama2
  15. Slayadragon

    Slayadragon New Member

    I read your post more thoroughly today. My headache is gone and the world is making more sense.

    You had a really hard time of it for a while, and that kind of stress is what sets CFS off in (I believe) those of us who are genetically predisposed. Your story sounds very familiar.

    I have siblings but have been doing way too much with regard to managing my own family's matters. Especially since I have been on the antiviral, it has been far too stressful for me. I had a talk with my mother the other day making it clear that I was not the "leader of the family" but rather a "member of the family." She seems to finally be getting it.

    With regard to stress in general, and my family in particular, I will need to be very careful if I ever get back to reset (meaning feeling well again). I am sure--and my doctor agrees--that it would be very easy for me to fall back into this pit again. It's hard to banish stress from your life totally, but doing so is very important for us.

    dncgfngrs gave a whole lot of good information to supplement my comments below on another post, and so please take a look at that.

    Let us know how you are doing. It's really hard to feel like you're alone in this.

    I think medical treatment will get better pretty soon, and people are starting to accept it as a real disease. We're still at a very difficult stage, though.
  16. Slayadragon

    Slayadragon New Member

    No, nothing with regard to CFS seems to be standard practice yet. Still, bad scores on genes known to be related to the immune system do not bode well for the ability of the body to manifest this illness, even if the ones that are "the cause" haven't yet been found, I think.

    I also tend to think that most diseases do not manifest themselves unless a multitude of factors are present. Sometimes it could actually be best to blame it on factors that we can control than ones we can't.

    I do think that this is a disease that is highly determined by genetics. But once I know that I'm genetically susceptible, there's really nothing to do to change it.

    It's also obvioiusly (in my view) caused by a viral infection. But avoiding viruses is an impossible thing to do.

    The main factor that I do have control over is stress. Severe stress of one sort or another (usually with an emotional component and often with a physical one such as my head injury) seems to fairly universally precede the "killer flu" that began the manifestation of my illness. If I had been more cautioius with my health, probably I could have avoided that.

    If I had known I was susceptible to this disease, I might have been more careful about taking care of my health to begin with. I certainly will be careful in the future, should I "recover" from it.

    Of course, really, I tend to think doing one's best to keep stress at a minimum regardless of whether you know you have a particular health problem. The brother of a friend recently died suddenly of an unexpected heart attack when he was only 52, following a great deal of stress. It would have been a lot better if he had slowed down as well.

    Hidden anger or toxins couldn't help, and conceivably maybe they're the tipping point that cause a few or some people to fall into the pit. 'The" cause, no. But "a" cause.....possible. Everything affects everything, perhaps.

  17. Slayadragon

    Slayadragon New Member

    Agreed---genetics is not destiny. Sitting back and saying, oh, we can't do anything about it helps no one. If what people/companies are doing is going to have a detrimental effect on people and there's not a very good reason for doing it, then they have the moral obligation to stop doing it. And perhaps they should have the legal obligation as well.
  18. yellowbird

    yellowbird New Member

    Yes, I wish I'd known I was susceptible to CFS, I wish I'd known to be more careful with my health... I got sick around age 22 and I'd somewhat bought into the whole North American 'test your limits, push yourself to the edge' thing. Lots of people can do that and come out okay, but clearly not if your HPA axis is 'weak' to begin with.

    If/when I go into remission again I will definitely not think of myself as cured, but as in *remission*. Otherwise, knowing myself, I'm liable to get too busy and driven again.
    Cheers,
    Yellowbird