Discussion in 'Latest ME/CFS Research' started by kurt, Nov 14, 2009.
This is interesting, maybe consistent with DHF in CFS? But is this congenital or acquired?
Their conclusions sound like Cheney's:
I think it's acquired because I think our illness is caused by a retrovirus, now known as XMRV.
Well it says half the patients had a body mass index below 20 and mine is about 17.5, and I have always been skinny. It is hard to know if the small heart came before or after the CFS. I think it is possible these problems could have been present before the onset of the disease and this is why about 50% to 90% of people with XMRV are healthy (depending on which epidemiology figure of CFS you believe), but it's probably possible they can come after, too. Very interesting report by the way; thanks for posting.
Hi; I posted on this some time ago on another thread, but will repeat here because it may be relevant. I had an echo in Dec 2005 post heart valve surgery that showed some weakness in diastolic function, but it was very modest. Then Dec 2006 I was hit with CFS (only recently diagnosed). The next echos showed declining diastolic function (worsening E / A wave ratio) and the appearance of abnormal wall motion (just as Cheney describes in his latest DVD); the cardios here of course attributed this to the surgery, though my first post-surgical echo stated explicitly that there was no abnormal wall motion.
My last echo in Oct 2008 showed a slightly smaller left ventricle and abnormal wall motion, though a high Ejection Fraction, and also a worsening E/A wave ratio. My guess is that the ventricle was not filling completely, and that the smaller heart was really a heart not functioning very well just as Cheney describes, though of course I could be wrong. Best, Chris
This IS interesting, thanks for posting. This is consistent with Dr Chia's enterovirus theory of CFS, in my opinion. In particular, the coxsackie virus, which is known to damage the left ventricle.
our small hearts--follow-up
Hi, I just had another echocardiogram, and now have a sequence. In Dec 2005 my left ventricle diameter was recorded as 4.3 cm; in Oct 2008 it was 3.8; now it is 3.4. My exercise tolerance has gone down a lot during these years. I brought this to the attention of my latest cardiologist last week; he was neither interested nor impressed. They are a hopeless bunch!
However, there was no abnormal wall motion in 2005 (one year after heart surgery for a stenotic aortic valve plus one bypass); in 2008 there was abnormal wall motion, of the kind Cheney describes and illustrates in his latest DVD; this was ascribed to the surgery in ignorance of the 2005 finding. No abnormal wall motion was noted in the 2010 ech.
The E(arly) wave to A(trial) wave ratio was .9 in 2005, with a note from my then excellent cardio that "filling was perhaps acceptable in view of the age" (I was then 72). The ratio had worsened to .75 in 2008; but has now risen to .8 in 2010. I have been taking Artesunate, following Cheney's report that it has reversed diastolic dysfunction in some of his patients. So I am still a little hopeful..
Thanks Chris, for sharing this.
Are you taking Artesunate by the intravenous method? How much and how often, please, if you could share this?
could be both do we know how they were diagnosed
A doctor of my acquaintance had "maybe Lupus" for years before it was discovered she was in "heart failure" and she was urged to go on a transplant waiting list. She put herself on antibiotics - I believe doxy. I don't know what her thinking was because I don't think she's ever accepted a diagnosis of ME/CFS. Anyway, she can, and does, treat herself with antibiotics and is much, much better and not even considering transplant. She is even back to work on a reduced schedule.
Just an FYI.
All the best to you!
Koan, good for her! but think I will stick with Artesunate for a while longer--I think viruses are more likely than bacteria, and have more associations with ME/CFS, which I am sure I do have. Whatever works... and a good reminder never to just take a doctor's word for one's condition! And good to see you still actively with us! Best wishes, Chris
She has severe Diastolic Dysfunction and collapses her LA [left
atrium] on HUT [head up tilt] as her ejection fraction hits nearly 80% on HUT as
she cavitates her LV also. She has a bidirectional shunt through her large PFO.
this is what my cfids dr had to say re: my heart....scary
I think there is an immune modulating effect exerted by doxy. I have classic ME and take it several times a year for a month at a time and it really helps but I don't think it's necessarily because it's killing bacteria... though it may be.
My friend did not have bacterial endocarditis or cardiomyopathy or anything like that. She has no explanation for why it worked. It just does.
It's really, really, really good to be back, thanks! So good I have decided to throw myself on Simon Wesseley and transcribe him whenever the need arises! The least I can do!
Gosh, that does sound scary! It also sounds classic! How scary did your CFIDS doc say it was?! :worried:
Hi, Lisag--your doc talks exactly like Paul Cheney--are other docs latching onto his latest stuff? Interesting! I wish I knew just what my heart is doing--but a regular echo just shows a bit of mitral regurgitation and a high ejection fraction, so the cardios think all is fine. I really am tempted to go to see Cheney--but don't think I would survive the trip, and don't have the cash. I shall see what the impedance cardiography shows if and when I can get it.
Koan, will have to investigate doxy--don't know if I could get it from my doc--she refused LDN, and I am trying for a more cooperative doc--don't know whether I will succeed.
koan/chris: my diagnosis/symptomology was fairly common for his patient base... my heart condition perhaps a bit more severe. this all explained why i cannot stand for more than 3-5 mins w/out my heart pounding crazily and becoming short of breath. i have been on this docs protocol for 1 year and have not seen any improvement...so i am eagerly awaiting my next step....it hasn't presented itself to me yet...though i am in constant search of it.
i am extremely sensitive to any meds/herbs/supplements so it's hard to treat me....at some point i'll have to step off the cliff and try something radical in hopes that i can recover my health.
when i first read my docs write up i freaked out,,,but then it was really just confirming what i knew all along...that i am really really sick and the name cfid's is severely inaccurate in describing the severity of my illness.
hopefully though...... the times they are a changin'
chris: this analysis was done after i had an impedance cardiograph...my regular echo showed the same things as yours plus a heart murmur.
I don't recommend doing that. Listen to your body. I know it's very hard dealing with this but I suggest just resting as much as possible and eating right. If you do try something research the heck out of it first and try to find people who react to things similarly to you who are trying it.
I'm in the same boat. I wish I hadn't taken the anti-viral Valcyte for 7 months now as it made me much worse. My advice is to be very careful.
Lisa, good to find someone else with some of the same symptoms, even if they are lousy ones to have! Have you thought of trying Artesunate? Cheney has had patients on it for more than a year now, and reports no problems and reversal of diastolic dysfunction in some cases--I don't know what your doc's protocol is, but it might be worth discussing it with him/her, since the work-up (including the Foramen Ovale Patent stuff) seems so clearly influenced by the info on Cheney's last DVD talk. Best, Chris
Chris, do you get the Artesunate intravenously? What is your dose? Thanks
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