Air Hunger

[Mattman1]

Concerning more regarding cardiac involvement:

Lerner states that at least 90 percent of CFS patients have abnormal T-wave findings on EKG either at rest, or more typically, during exertion. Have any other studies correlated any truth regarding this? It makes sense given what Cheney says about inefficient left ventricle contraction, but something tells me it's a too good to be true, perhaps. Interested in knowing if anyone here has tested positive for this finding...

 

[alex3619]

I have to sleep on a pile of pillows in order to get my breath, xraysspex. Lying flat just doesn't allow me to fill my lungs with oxygen most of the time. Standing and sitting forward are also positions which help me get enough oxygen during the day. I've done a saliva cortisol test which wasn't great but it wasn't terrible either (low in each reference range). I've also had a complete thyroid panel done which showed high RT3 so I'm on T3 only but can only tolerate 25 mcg per day, presumably because my adrenals are weak. I'm slowly working up 5 mg every month or so but so far the problem hasn't resolved.

Hi dsnrbec, since a bad flu in May I have experienced this too. Now I have to sleep half sitting up , propped up with pillows. If I do not the air hunger is too disturbing for me to sleep. This is a new problem for me, despite having ME for decades I never had air hunger till recently. Bye, Alex

 

[currer]

I had this problem at the beginning of my illness. I never found out what it was due to, but it went away as my general condition improved.

 

[Sherlock]

hey looking for clues I think that might be what I was trying to remember and find, thanks!
actually, I consulted with Dr Cheney once in 2008 and he did his special echo on me and told me he thought I likely have a PFO given the results on how he does the echo. The way he does the echo is very unorthodox however

With head bent forward onto the chest? that might be to increase pressure in the chest/heart and make the PFO open up while pumping is going on, in order to be seen.

The incidence of PFO is >20% in adults, and about the same in men and women:
http://www.medicine.ox.ac.uk/bandolier/band142/b142-4.html

 

[Sherlock]

Question on my mind though..Has anyone here gone through the examinations Chemey is talking about here? If the Protocol he is talking about is so accurate, shouldn't all CFS experts be making the transition for it to be a common test?

That's exactly what I'd thought, why hadn't that approach swept the world since 2005. I'd come across some talk that the approach might or might not be accurate.

One thing to keep in mind regarding Cheney: his patients are in the most severe category. Also, in the latter end of his talk, IIRC he says that the diastolic dysfunction he has been talking about only really occurs on the most severe cases. I'll have to double check that if/when I listen again.

Here is a very long and well done analysis of the ideas in that video:
http://phoenixrising.me/research-2/...sting-the-heart-stroke-volume-future-research

The Tests – Impedance cardiography is a non-invasive means of testing heart functioning that uses electrical impedance – the interference of electrical signals by liquids – to measure blood flow through the heart. A number of confounding variables (i.e. sex, chest size, percentage of fat, etc.) reduced impedance cardiography’s reliability at one time. A recent study, however, indicated that impedance cardiography generated impressively precise figures

 

[Sherlock]

Thanks for your feedback and for the welcome. I'm pretty sure it's not heart related since my ejection fraction is good and EKG and echocardiogram are normal. I've also had chest x-rays and even a ct scan to rule out a pulmonary blood lot. Whenever they have checked my O2 stat, it's always around 99 percent so that is also puzzling. That beings me back to methylation or HPA axis issues. Since I'm mercury toxic but unable to chelate until pathways are open, I guess I'll have to live with it for now. I sure am tired of sleeping sitting up!

FWIW, and just going from memory on a single listen to the blitz of info in Cheney's talk:

• EF number is good in the diastolic dysfunction (DD) that he centers on. The reason is because of the compensation. The blood vessels tighten up in parts of the body in order to keep pressure up. He say that occurs in the gut and creates leaky gut
• EKG won't show DD
• DD is only shown well in an echocardiogram by that special type of echo machine
• O2 sat is normal, even in a 'holding your breath' test of it, because the cells aren't absorbing the O2 so the level in blood stays good

So that's Cheney's approach, anyway. At least as it was in that video series from 2005.

 

[Sherlock]

Regarding sleeping while propped up on pillows, that turns out to be a classic sign in heart failure. However, so as not to be too alarming, please note that asthma or bronchitis are also possible causes.

Left-sided failure

Backward failure of the left ventricle causes congestion of the pulmonary vasculature, and so the symptoms are predominantly respiratory in nature. Backward failure can be subdivided into failure of the left atrium, the left ventricle or both within the left circuit. The patient will have dyspnea (shortness of breath) on exertion (dyspnée d'effort) and in severe cases, dyspnea at rest. Increasing breathlessness on lying flat, called orthopnea, occurs. It is often measured in the number of pillows required to lie comfortably, and in severe cases, the patient may resort to sleeping while sitting up. Another symptom of heart failure is paroxysmal nocturnal dyspnea a sudden nighttime attack of severe breathlessness, usually several hours after going to sleep. Easy fatigueability and exercise intolerance are also common complaints related to respiratory compromise.
"Cardiac asthma" or wheezing may occur.

http://en.wikipedia.org/wiki/Heart_failure

BUT as that is very alarming, fortunately there are other possible causes:

Causes

Orthopnea is due to increased distribution of blood to the pulmonary circulation while recumbent,[2] but usually can be attributed to a more fundamental cause.
Orthopnea is often a symptom of left ventricular heart failure and/or pulmonary edema.[3][4] It can also occur in those with asthma and chronic bronchitis, as well as those with sleep apnea or panic disorder It is also associated with polycystic liver disease.

http://en.wikipedia.org/wiki/Orthopnea

The asthma angle would even relate to mast cells and histamine, chronic bronchitis to infection.

 

[Sherlock]

Last but certainly not least, from a respected site for primary care docs:
http://www.aafp.org/afp/2006/0301/p841.html

The serum brain natriuretic peptide (BNP) test can accurately differentiate heart failure from noncardiac conditions in a patient with dyspnea, but it cannot distinguish diastolic from systolic heart failure.

So if a person has good value for BNP, any worry about heart failure can be thrown out. I see the test online for <$100.

Regarding modern imaging, that article also says that

two-dimensional echocardiography with Doppler is used to evaluate the characteristics of diastolic transmitral and pulmonary venous flow pattern

Whereas the older imaging that Cheney talked about via Peckerman seems to be "Impedance cardiography" https://en.wikipedia.org/wiki/Impedance_cardiography#Noninvasive_Hemodynamic_Monitoring
also http://www.medscape.com/viewarticle/463474_5

And btw here is the machine itself: Vivid 7 http://www.absolutemed.com/Medical-...D-VIVID-7-ULTRASOUND-MACHINE-CARDIAC-VASCULAR

"Launched in 2001..." $90,000

 

[Sherlock]

Hi dsnrbec, since a bad flu in May I have experienced this too. Now I have to sleep half sitting up , propped up with pillows. If I do not the air hunger is too disturbing for me to sleep. This is a new problem for me, despite having ME for decades I never had air hunger till recently. Bye, Alex

Did you get a BNP test to eliminate the possibiltiy of viral myocarditis--> heart muscle damage/failure?

 

[alex3619]

Hi Sherlock, my local doctors are useless, and my next doctors appt. is December. Given that I developed post prandial air hunger shortly after, I think its a blood volume OI issue. Bye, Alex

 

[xrayspex]

LFC you are just full of good info. That BNP test sounds like it should be routine for us CFS people. geesh.

I don't recall Cheney's echo having me put my head to my chest, maybe some more current patients of his could update us. I only went the one time and was able to consult occasionally for a year after that, you have to go annually to stay in touch, I would loved to have continued but I don't have the means to justify/afford it.

But as I recall for his echo I was lying down for and it involved them seeing how our heart reacted to bison peptides on our arm, something to that effect. The tech was intrigued by it because the echo reactions are real, but its basically looking at how organic substances cause changes, I think he tested other things too, that may be where he got idea to have us have a little dark chocolate......he may have been testing out a lot of his treatments, supplements that way. I need to dig up my info, I never did transcribe my tapes of him talking but I still have them somewhere.

I think I was a more higher end functioning person for him, he was impressed I still work although its part time. I thought there was some other accepted med test that he said he can use if called to court to testify for disability, some heart test where blow gas bubble into it or something, that would settle the question of pfo or fatigue to mainstream satisfaction.

oh here is info on it:
http://www.doctorharkness.com/procedures/cardiac-echo-bubble

 

[Sherlock]

LFC you are just full of good info. That BNP test sounds like it should be routine for us CFS people. geesh.

I don't recall Cheney's echo having me put my head to my chest, maybe some more current patients of his could update us. I only went the one time and was able to consult occasionally for a year after that, you have to go annually to stay in touch, I would loved to have continued but I don't have the means to justify/afford it.

But as I recall for his echo I was lying down for and it involved them seeing how our heart reacted to bison peptides on our arm, something to that effect. The tech was intrigued by it because the echo reactions are real, but its basically looking at how organic substances cause changes, I think he tested other things too, that may be where he got idea to have us have a little dark chocolate......he may have been testing out a lot of his treatments, supplements that way. I need to dig up my info, I never did transcribe my tapes of him talking but I still have them somewhere.

I think I was a more higher end functioning person for him, he was impressed I still work although its part time. I thought there was some other accepted med test that he said he can use if called to court to testify for disability, some heart test where blow gas bubble into it or something, that would settle the question of pfo or fatigue to mainstream satisfaction.

Thanks, xray. It helps a lot to talk back and forth about these things, as far as remembering and also in getting further info - as from you just now about bison on the arm?!?!?

And here it is:
http://sacfs.asn.au/news/2009/05/05_21_paul_cheney_talk.htm

(16) "For years Cheney has used a LMW peptide called Kutapressin. In recent years he has added other Cell-Signaling Factors (adrenal, thymus, heart, kidney, and bran). Cheney makes his own, presumably a gel. The one for the heart is from bison."
Dr Cheney no longer uses Kutapressin. He currently uses five cell signaling factors to treat his patients: bison heart, bison liver, bison kidney, bison pancreas and porcine brain. Adrenal and thymus and porcine liver (pigs are scavengers and their P450 systems cause an adverse response in most CFS patients) are only used for testing purposes. Dr Cheney currently manufactures the treatment cell signaling factors mixed in a base of golden jojoba oil for transdermal application to the inner arm from wrist to armpit.

Also, yes I remember there is a well-established test for PFO which sees the bubbles passing from one heart chamber to the other.

Here is a not-very-helpful video of the sono, www.youtube.com/watch?v=WsWK8f0tAyY

But the caption there reminds me that migraines are associated with PFO. Are migraines associated with CFS?

 

[loayachil]

uhh... what are PFO and EF

 

[Mattman1]

It's interesting that so many of his patients supposedly have PFOs. I got an echo that came back clean, but have read that they can miss things like that. Also what's somewhat disturbing, is that the rhythm disturbances often found on EKGs with CFSs confirm with that of actual cardiomyapathies, especially that of right ventricular dysplasias. So if you ever get any abnormality whatsoever on an EKG, my advice is to pursue it as far as one can (within reason!) and not just let it 'slide'. Knowing your heart is in the clear is a massive peace of mind that some cardiologists are far too flippant about, sadly. I'd know, I went to one. Awful experience. Wouldn't even hear my request for an event monitor.

I think Lerner even mentions that heart biopsies of his patients often produce abnormalities as well. This all ties in with some degree of logic as to why some studies have us at significantly increased risk of dying from such heart disease-- if our arteries are supposedly as clean as the regular persons, than something else is going on there.

 

[Sherlock]

uhh... what are PFO and EF

PFO = Patent Foramen Ovale, a hole between the two upper chambers of the heart (the atria). The hole is supposed to close soon after birth, but doesn't in >20% of people.

EF = Ejection Fraction, a percentage of blood that gets pumped out of the heart chamber. E.g., it can be low if the heart muscle is weak (there are other causes, too)

 

[Sherlock]

I think Lerner even mentions that heart biopsies of his patients often produce abnormalities as well. This all ties in with some degree of logic as to why some studies have us at significantly increased risk of dying from such heart disease-- if our arteries are supposedly as clean as the regular persons, than something else is going on there.

I'll just type this out in case it's useful to anybody, on what I'd learned about myocarditis a few months after getting sick:

As of the last time I'd looked (3 years ago), the only reliable way to diagnose viral myocarditis was via biopsy after autopsy (which might be done after Sudden Cardiac Death). Myocarditis is the 2nd leading cause when an athlete dies on the field (the 1st is structural abnormality). An inflamed heart messes up the electrical conduction. The fatal mechanism for SCD is then Ventricular Fibrillation - IIRC around 28% die in the short term, especially in fulminant myocarditis. It's becoming more commonplace to forbid a high school athlete to participate until a certain period of time has elapsed after a bad cold.

In the longer term, the death risk of ~50% comes from heart failure.

There is/was a Dallas Criteria used to diagnose myocarditis indirectly. They also can take snips in biopsy on a living person, but that can give false negatives if they happen to miss the spots with lymphocytes and other leukocytes. A heart infection can be in spots (focal) or all around (diffuse).

That's all for the heart muscle itself. Inflammation of the membrane/sac surrounding the heart is pericarditis, which is less deadly, IIRC. Inflammation on the inside is pericarditis, especially in the valves - also less deadly but can require valve replacement surgery.

Matt, do you happen to have links to any video or audio with the doc you mention? I can't find any. Also, thanks for posting your experiences.

 

[Mattman1]

http://www.cfids-cab.org/MESA/Lerner.html

This links to a long talk with him (Lerner) talking about ME at a sadly, I'll-attended looking conference. Still, the information is good.

Like you point out, severe inflammation can lead to cardiac involvement; and if you're getting hit by a fever several times a month like many here are, it becomes evident that over time, this can lead to complications. Sure, your echo may have looked great two years into the disease...but how about ten years later?

For all the supposed thousands out there they have seen or treated, I would like to hear more accounts from the likes of those who have visited Cheney and Lerner; specifics as well, like Xray offered. For the amount they charge, it would be nice to know more..

 

[natasa778]

Probably a long shot but wondering if anyone could link their air hunger to food reactions, including delayed sensitivity reactions? This would be hard to pin down anyway but what made me think this is that I had a week or so of this symptom straight after coming back from holiday once. I was feeling fine otherwise, so if there was something I picked up there or during travel it didn't cause any other symptoms. Also this was somewhere I go to regularly so unlikely to be linked to the place itself. What was different this time around ... well it was time of festivities and I'm ashamed to admit I was stuffing myself silly with cakes of all sorts (nice homemade ones ) for days. So now wondering if the air hunger could have been caused by aftermath fluctuations in blood sugar, or some sort of delayed food/mast cell/histamine reaction (to wheat maybe? as I normally consume it in very limited amounts...).

 

[alex3619]

Air hunger is also known as dyspnea, and the kind that occurs lying down but not sitting up is called orthopnea. It occurs because the body cannot shunt blood from one place to another, and in one form as blood accumulates in the blood vessels supplying lungs a feeling of suffocation occurs.

Heart failure is one known cause. Cheney has seen this symptom in some of his patients. However, orthostatic intolerance can cause it too, I think. Orthostatic intolerance can prevent the body properly regulating blood flow. Similarly when someone eats blood flows to the gut, resulting in reduced blood elsewhere. If we have decreased blood volume then a shift in blood to the gut will cause problems.

Dyspnea is not always dangerous. If it is chronic or severe it needs to be investigated. Dyspnea occurs more often as people get older.

I have a whole bunch of risk factors for dyspnea. Finding out which it is, should the problem not completely resolve (I have been improving) is a complex process unless the doc guesses right first time. I do not have dyspea on exertion though, which tentatively rules out many causes.

Some drugs can cause it.

Cytomegalovirus might cause it. Dyspnea often occurs in immune compromised people.

Bye, Alex

http://www.fpnotebook.com/lung/Sx/DyspnHstry.htm
http://www.fpnotebook.com/Lung/Pharm/MdctnCsOfDyspn.htm

 

[Vincent]

When the OP means air hunger, do you mean not being able to get enough air in? I have had that problem and it seems to come when my heart start beating 'hard'. Not faster, just harder. I've even been to the hospital about it. Naturally they have no idea why but I have stumbled across some info.

I remember reading that people with CFS have low blood volume, along with the orthostatic hypotension. Mitochondria have also been implicated in CFS. I listened to an interview Dr Stephen Sinatra had with Mercola on youtube. In the interview, and I assume his book, he recommends dribose, carnitine, and magnesium. I believe he said in the interview that the heart either has a high concentration of mitochondria or is heavily reliant upon them.

Anyway I know that isn't necessarily related to your lung issue but I know the lungs and heart work very closely together. You might want to search out that dr's books and find out more info. Also once I started that protocol my feeling like I didn't have enough air went away, as if my air utilization increased in some way. Don't know exactly why but I know it worked for me.