In your opinion, it sounds like I would then be having both tests at the same time, the radioactive albumin (to show blood perfusion) and the radioactive xenon gas (to show air ventilation) in the lungs?
That's how it's usually done.
Does this mean double the radiation (the injection and gas)
Basically, yes. But it's like having two X-rays instead of one - a front view and a side view.
I have never been able to wear one of those surgical masks (always felt claustrophobic like I couldn't get any air) and right now I have significant shortness of breath anyway, so how would I manage it? Do you have to wear the mask for a long time?
Here's a little info from the NIH that should answer your questions:
Ventilation
For this scan, you lie on a table that moves under the arm of the scanner. You wear a breathing mask over your nose and mouth and inhale a small amount of radioisotope gas mixed with oxygen.
As you breathe, the scanner takes pictures that show air going into your lungs. You'll need to hold your breath for a few seconds at the start of each picture.
The scan is painless, and each picture takes only a few minutes. However, wearing the mask can make some people feel anxious. If this happens, your doctor may give you medicine to help you relax.
Back to your message:
I do have what I would call "Ischemic pain" and it is interesting that you said this can be from low blood volume.
The reason for this is that whether you have ischemia or low blood volume (or both), the end result is the same: Not enough oxygen and nutrients get to your heart muscle. This causes pain for the same reason that using any muscle too much causes pain, where "too much" means trying to get more work out of it faster than it can be resupplied with oxygen and nutrients.
One thing cardiologists should keep in mind is that viruses can attack the myocardium. It's just very important to rule out every possibilities especially when you're this sick
Thank you for bringing this up, Kati, as it's very important.
@
Gingergrrl, it's important to remember that all medical students are taught, "When you hear hoofbeats, think
horses, not
zebras." They have this drilled into them, as otherwise medical students would get used to looking for exotic explanations for simple disorders.
Unfortunately, we're a herd of zebras. Some doctors realize this, some don't, but in either case, they don't know what to do with us. So even if you've got the best cardiologist in the country, if he doesn't know ME/CFS as well as a specialist (as he undoubtedly doesn't), you have to make sure that you tell him enough about it so that you get tested and treated properly. I gather that Kati sees this too; she has referred to your cardiologist as "top notch", yet she still felt the necessity of pointing out something he should check for. Kati's a nurse, which means she knows how human doctors really are.
@
Gingergrrl, you later said that two cardiologists said that you didn't have myocarditis. Yet myocarditis cannot be definitively diagnosed or ruled out with the tests you've had so far. They're still looking for horses; you're a zebra.
Here's
part of a post from one of the many threads that make up the wonderful tapestry that is PR:
You could take this paper to your dr:
BACKGROUND: The first diagnostic hypothesis in a middle-aged patient presenting with inaugural ventricular tachycardia would be coronary artery disease. If the work-up lacks arguments for this etiology, other cardiac conditions may be involved (dilated cardiopathy, hypertrophic cardiopathy, valve disease arrhythmogenic dysplasia, long QT...). CASE REPORT: A 52-year-old male patient was referred for inaugural ventricular tachycardia. The initial work-up including echocardiography, coronography and the electrophysiologic study provided no explanation. The ventricular tachycardia was later attributed to viral myocarditis. DISCUSSION: Viral myocarditis should always be entertained in patients with unexplained ventricular tachycardia, particular if a viral context is present.
The bolding and coloring is in the original. I am pretty sure that what you have is "unexplained ventricular tachycardia", but not 100%. As the original poster says, you can take the paper to your doctor.
This article mentions antibody-labeled scintigraphy as a definitive test, but as this is a 1998 paper, and this test is mentioned nowhere else on the Internet for myocarditis, I don't think it's in use. The only definitive test I know of is a heart muscle biopsy. Here's an excerpt from another message I wrote about myocarditis:
The symptoms of viral myocarditis can vary a lot from person to person, and many people can be completely asymptomatic. Basically, there's no easy way to tell if a virus has gotten into your heart muscle or not. The only way to know for sure is to do a heart muscle biopsy, which is not done in this country as it is a rather invasive procedure.
However, those ME patients who have tested positive for either parvovirus or any of the herpes viruses have always shown a positive result for viral myocarditis when a heart biopsy is done. (This procedure is usually done in Germany.) Furthermore, those ME patients who died while they had an active parvovirus or herpes virus infection were always found to have viral myocarditis when the heart was checked on autopsy.
Because of this, Dr. Martin Lerner, who is a leading ME/CFS specialist who has done a lot of extensive studies of the heart in ME/CFS patients, simply assumes (apparently correctly) that any PWME with an active parvovirus or herpes virus infection has viral myocarditis.
Dr. Lerner's treatment of choice is Valcyte, which works for all herpes infections. You can find his Web site
here.
On to your next message, @
Gingergrrl...
I do not have actual chest pain (but sometimes have what feels like chest tightness or pressure- what I assume is the exercise induced ischemia?)
The chest tightness or pressure is generally considered chest pain; it's the same feeling people get (to a greater or lesser degree) when they have heart attacks, although that's
not what's happening with you. It's also not necessarily exercise induced ischemia, as ischemia implies a narrowing of the blood vessels, and there's no evidence right now that you have that; your symptoms are just as well (if not better) explained by low blood volume.
The list for myocarditis also said "heart failure" which was ruled out for me on the echo and blood tests.
This is actually quite surprising. Heart failure is defined as the inability of the heart to provide sufficient blood circulation to the body. If you have low blood volume, then if you're blood volume is low enough, there's simply not enough blood to provide sufficient blood circulation to the body. This is very common in PWME, which means that you may have heart failure even if your heart is otherwise healthy. Low blood volume is uncommon outside of ME and POTS, and the situation is much more complicated in ME than POTS due to all the other factors involved in ME. Almost all doctors are completely unfamiliar with this picture as a whole - even the good ones.
Dr. Paul Cheney said long ago that we're all in heart failure, meaning all of us with true ME. Dr. Cheney isn't always right about everything, but I think he is here. In our case, the heart failure is caused primarily by dysautonomia, both manifesting directly and in the form of low blood volume. Other contributing factors are mitochondrial dysfunction, since mitochondria make up half the heart muscle, magnesium deficiency, since the heart needs twice as much magnesium as other muscles, and in some cases, viral infection.
I also do not have abnormal arrythmias and I have done three Zio Patch tests (a continuous ekg similar to a holter test but for an entire week) which captured endless episodes of tachycardia and I was told (and have a copy of results) that I have only inappropriate sinus tachycardia and my heart never left sinus rhythm.
None of these rule out myocarditis. For example, from the article
Acute pericarditis, myocarditis, and worse! in the journal Canadian Family Physician:
Patients with acute pericarditis or myocarditis usually present in normal sinus rhythm or with sinus tachycardia.
I also do not have shortness of breath at rest, do not have fever (actually have constant low temp) and do not have swelling in legs or feet.
Again, none of these rule out myocarditis. The variations in the shortness of breath have a lot to do with your blood volume; the low blood volume is less of a problem when you're resting, as your body needs less oxygen and nutrients at those times. The fever they're looking for is for a sign of infection. You have the infection, which is EBV; it's just not giving you a fever. Part of the reason for this may be due to immune system dysfunction. The problem with specialists is that by necessity, they tend to have a narrow view of illness, namely their specialty. They have to, because there's too much medicine for anyone to learn it all. But the price of specialization is that they can miss the big picture, and ME is a big picture disease if ever there were one. You just have to keep remembering that your doctors are not experts in ME.
In hearing all that, does it sound like myocarditis in your opinion?
Yes. I'm also going by Dr. Lerner's criteria.
Is there a definitive test for myocarditis?
Yes; the heart muscle biopsy. That's the only one.
They told me from the echo and other tests that I did not have it but of course now I am doubting everything.
I'm afraid that that's a healthy attitude for someone in your situation, especially given what you've been told.
Would the CT angiogram show it if it is there?
Very doubtful. Only the heart muscle biopsy is definitive.
Also, my CFS doctor was worried about Parvo virus in the heart but then I tested negative on three Parvo tests so he felt this ruled out Parvo.
That is probably a safe decision. But as some people have pointed out, the lack of positives on some tests may simply be a reflection of our immune system dysfunction. For example, right before death, AIDS patients test negative for HIV. This doesn't mean that they don't have HIV; it means that their immune system is no longer producing antibodies against it.
And then there's my case. I tested negative for all herpes viruses, yet ganciclovir and Valcyte helped me recover tremendously. How can that be? These drugs (which are actually the same drug when metabolized) are effective only against herpes viruses.
Nevertheless, barring evidence to the contrary, you probably don't have parvovirus, and I wouldn't worry about it. EBV can explain your symptoms sufficiently.
One thing cardiologists should keep in mind is that viruses can attack the myocardium. It's just very important to rule out every possibilities especially when you're this sick
That's what killed a ME/CFS person years ago now, Cory his name was , I cant remember his last name, he was very young (in his early 20s or something like that and had had ME since being a child). He been doing much better , getting into reliving his life again and then suddenly he was dead (I think he died in his sleep) due to obviously some reactivating virus attacking his heart (during his autopsy, they found he had scar tissue throu his heart where it had been attacked in past too).. I dont think he got warning if Im remembering correctly. His mother used to run some ME/CFS support I think (I think she had ME/CFS too).
That's why it's so important to get the diagnosis right, and that's why I think Dr. Lerner is doing exactly the right thing by assuming and treating for viral myocarditis in the presence of ME and active herpes viruses. He's a doctor who knows the heart, knows viruses, and knows ME. His "Better safe than sorry" approach makes a whole lot of sense to me, and simply sounds like good medicine.
