So has anyone actually been treated for the tricky heart in cfs?

Discussion in 'Fibromyalgia Main Forum' started by meowchowchow, Aug 19, 2005.

  1. meowchowchow

    meowchowchow New Member

    Wondering if anyone has actually received treatment/testing for this? If our problems are caused by a heart problem...
    Thanks,
    Meow
  2. greatgran

    greatgran Member

    Bumping, I would like to know also..
  3. meowchowchow

    meowchowchow New Member

    I guess what I mean is...if our hearts are already damaged from the viruses, are we just screwed? Can't ever get better? Can't ever exercise again?

    If you're treated then will you be okay? Isn't the damage already done?

    I can't even get a dr. to acknowledge CFS as real. I was diagnosed by a neurologist 8 years ago who I think just didn't know what else to tell me.

    I'm just so frustrated and at my wits end.
    Meow
  4. greatgran

    greatgran Member

    Mewo, oh how I can relate to the last post. The heart issue how do we find out if we have it, what can be done and will we ever have a life again..After 5 years and going from doc to doc with no difinite dx. I feel I am getting worse and not better..

    Will we ever be able to exercise again, my doctor keeps saying I need to..heck I can just manage to take care of myself...I think if we had some answers we certainly could deal with this dd much better...

    I do feel there is a difference in fibro and cfs but my doc thinks not..I know people with fibro that exercise helps but I certainly can't without paying a big price and I don't mean pain its like I have the flu etc...

    I so understand where you are coming from

    God Bless

  5. greatgran

    greatgran Member

    Bump please
  6. CFIDSNicole

    CFIDSNicole New Member

    I believe if you try to find the articles written about Dr. Cheney and Dr. lerner, you will find (I think) that they treat their patients with anti-virals. Dr. Lerner tells his patients absolutely no exercise or anything that gets the heartrate up untilthe antivirals have done their work and the patient has improved enough to handle the exercise.

    I'm feeling a bit cruddy today, bit if I can, I will try to find some of this infor for you.
    Nicole
  7. kbak

    kbak Member

    They as yet have not developed a test specifically for people with CFS that will detect cardiomyopathy. As I understand it, the regular test they do on people to test for this will not always show positive for people with CFS, even if they have it.

    There are 2 things that show real promise for anyone with heart damage. A herbal product that is made by 2 different companies. 1. Strauss heart drops 2. Kardovite. Then the other thing is very large doses of CoQ10 1200-1500mg/day. Which is very cost prohibitive.

    I think the only hope to feeling any better is anti virals, weather pharma drugs or natural. You have to get the virus load down to control the damage.
  8. meowchowchow

    meowchowchow New Member

    So how do you find a doc who will treat you for antivirals? My dr. would laugh at me. What test do they do to detect the virus? Aren't all traces of the virus gone? I had mono at 18 and I'm 30 now.
  9. CFIDSNicole

    CFIDSNicole New Member

    According to Dr. Lerner, I think a regular heart test can pick up cardiomyopathy in CFS patients--there will be slight abnormalities that docs who don't know what they are looking for wouldn't notice. Particularly T-wave abnormalities, I think -- something like that.

    Also, Cheney has biopsied some of his patients' heart tissues and found viruses that way.

    I think you would need to see Dr. Lerner or someone who follows his research in order to get the anti-viral treatment. I hope someone else will chime in here and let us know for sure.

    Nicole

    EDITED TO ADD: Clearly, doing a biopsy of your heart is not something that docs ar going to do---I believe when Cheney was doing his research the people in the research group got biopsies done. I think he now works on the assumption that all CFS patients have a cardiomyopathy and treats everyone that way.[This Message was Edited on 08/20/2005]
  10. JenniferAnn539

    JenniferAnn539 New Member

    Meow,

    Good question, thanks for posting.

    I will keep my eye on this thread.
  11. CFIDSNicole

    CFIDSNicole New Member

    If you google cardiomyopathy and CFIDS, you will come up with some information, including Dr. cheney's own website with his writing about it.

    And if you google cardiomyopathy CFIDS Martin Lerner, you will come up with some of his ideas.

    At least it is a place to start.

    Nicole

    EDITED TO ADD: We used to have a member who was being treated by Dr. Lerner with anti-virals for this specific problem, but she was banned. So, there are people being treated for this.
    [This Message was Edited on 08/20/2005]
  12. Mikie

    Mikie Moderator

    I'm hoping to get some answers. I'll let y'all know how it goes.

    Love, Mikie
  13. meowchowchow

    meowchowchow New Member

    Heart tests - If doctors (even cardiologists) can't pick up on the cardiomyopathy in CFS patients, then it can't be that bad of heart failure, right? It just doesn't make sense.
  14. CFIDSNicole

    CFIDSNicole New Member

    Not too long ago, Tansy posted an article about a man with CFIDS in the UK whose doctors prescribed exercise for him; he dropped dead of a heart attack leaving the gym one day. So, in some cases, the heart damage is quite severe. It's up to you to decide what you feel comfortable with, but if you are feeling as awful as you described in your other post, maybe you should take it easy.

    Nicole
  15. meowchowchow

    meowchowchow New Member

    Well I'm definitely not going to exercise for a while, if that's waht you mean. But people drop dead of heart attacks all the time, most of them don't have chronic fatigue syndrome. Could have been a complete coincidence.

    Doesn't the virus just run it's course, do its damage, and then leave the body? It seems like if you had a virus, they go away...unless you have an active infection, what good is it to treat it with antivirals?

    Thanks,
    Meow
  16. CFIDSNicole

    CFIDSNicole New Member

    I think one of the main problems with CFIDS is that we have lots of stealth viruses and other viruses that DON'T leave our bodies--that's part of why we are so run down all the time. Our immune systems are not normal at all.

    I don't know.
    Nicole
  17. CFIDSNicole

    CFIDSNicole New Member

    I am so happy to read you are doing so well! You haven't even been on the grapeseed very long, have you? I might have to try it myself. I can't believe the quality of life you have gotten back--that is incredible!

    Good for you,
    Nicole
  18. tansy

    tansy New Member

    There’s a hand out written by one of the UK’s top ME/CFS specialists in which she discusses the heart issues and possible ways of treating it. At the end of this article she emphasises the need to get treatments "tight" first, and that’s what many doctors do not understand. Nicole related how someone died through acting on his doctor’s advice to exercise; he had not been treated prior to following these instructions.

    You can see this UK based doctor’s thoughts about a possible treatment at
    http://www.immunesupport.com/chat/forums/message.cfm?id=617804&B=FM#618892

    We know that one of the signs PWCs have made good progress is not only can they tolerate exercise again but they also start to gain all the usual benefits from it. At this stage exercise actually aids a return to much improved health.

    Like hangininthere I have had to take a mostly alternative route to get where I am today; able to sustain more activity (mental and physical) but not yet ready for structured exercise programmes. Many of us have had to look beyond the virus theory to achieve improvements. I agree that all these infections do wear us down physically, so we need to treat them. Toxins and oxidative stress are important factors too.

    Problems with the heart, brain, and HPA often improve as a result of treating what is going wrong body wide.

    Tansy

    [This Message was Edited on 08/20/2005]
  19. 121043

    121043 New Member

    I was diagnosed with fibro 5 years ago. Now believe I also have cfs. Last november I had a heart attack,makes me wonder what really caused it?? Going to talk to my cardiologist about it.
    Loretta
  20. CFIDSNicole

    CFIDSNicole New Member

    Thank you for the reminder---I would not have made the connection about the grapeseed being a blood thinner. i will hold off on that.

    Again, I am so happy that you are finally seeing some improvement.

    Thank you Tansy for following up on all this--you are a treasure!

    Nicole