Cardiac appt results

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Mar 2, 2012.

  1. mbofov

    mbofov Active Member

    I just got back from the cardiologist and my heart is great, no sign of plaque or anything. I've been eating like a monk for many years mainly for my weight (no fried foods or sugar etc.) so I guess it's paying off, even though I can't exercise.

    He totally dismissed my abnormal impedance cardiography test I had a couple of years ago, the results of which are consistent with CFS (see Arnold Peckerman's article re impedance cardiography - you can google it).

    Dr. Gruenn, the L.A. doctor who I hope to get the peptide injections from, had told me to get a cardiac workup just to cover all the cases. I thought my heart was pretty good overall, although I do believe I have a version of POTS and low blood volume, again consistent with the IC exam, but none of that shows up on the regular tests.

    They did an ultrasound of my carotid arteries, echocardiogram of my heart and a "chemical" stress test, where they inject a potassium analog (I think?) instead of a treadmill test. I passed everything just fine, although I was crashed for two days afterwards. But that meant nothing to the cardiologist, like almost every other doctor I've seen.

    He told me to keep up the exercise (although I had just told him 3 days ago that I don't and can't exercise due to CFS) and come back and see him in a year, which I probably won't do.

    Anyways, I am glad it's all okay. It just would have been nice if he had listened to me, but I wasn't really expecting it.

    I had to get blood drawn today for some labs for Dr. Gruenn and will see him on March 15, and hopefully will get a peptide injection that day.

  2. Elisa

    Elisa Member

    Hi Mary,

    That is great news...I know what you mean about the doctors not hearing you. But you have a positive attitude about it!

    I have been reading about the peptide injections on Mikie's thread - so happy for her and hope I will be saying the same to you too very soon.

    March 15 is just around the corner...the blessing of a Spring recovery!

    Take Care and God Bless,

  3. spacee

    spacee Member

    Can't stand the ignorance of the docs....but great you are "go" for peptides,
    or almost, I think.

    Your diet has paid off....that was really impressive to me!


  4. deepak

    deepak Member

    Very happy for you :)

  5. mbofov

    mbofov Active Member

    Thanks for all your good wishes. I got quite sick yesterday so was off the board - I think due to crashing from all teh tests ....

    I really hope the peptides will be a go on March 15. Ironically you cannot be sick at the time of the injection so I've got to be really careful not to crash between now and then as I get sick every time I crash. Talk about a catch-22!

    Anyways, I do really appreciate your interest and concern and will keep you all updated on how it goes -

    Best wishes,

  6. mbofov

    mbofov Active Member

    This test is given by cardiologists. It is done using something called a BioZ machine. You can call the manufacturer, Cardiodynamics at 800-778-4825, and they will give you the name(s) of cardiologists in your area who have this machine. I think it's rather common. I used to live in a very small town and was surprised to find that a cardiologist there had it. There may be other manufacturers now, so if Cardiodynamics doesn't have the name of anyone in your area, you could just call local cardiologists' offices and see if they have it.

    It is really ironic that I had the impedance cardiography done at the same place as the cardiologisit (but I did not see him for the IC test), but he just completely dismissed it. It's crazy.

    But my regular CFS doctor is the one who ordered the test. He said the results show a form of congestive heart failure - not the regular type, but hte abnormal type people with CFS get and he has me taking a low dose of carvedilol for this. If you look at Arnold Peckerman's article, that's waht I have.

    I didn't notice any difference after starting the carvedilol. My CFS doc said the low number on my BP (forget the name - e.g., 120/80), well the 80 or whatever the actual number was, was higher than it should be due to this, and that's what the beta blocker is for.

    You could try printing out hte Peckerman article - it really does have all the information of why this test can be useful for people with CFS - and maybe that would help persuade your doctors ....

  7. mbofov

    mbofov Active Member

    I have trouble too remembering what "normal-ish" life is like - it's been too long.

    The problem with the tests was that I had to be fasting and also that it took too long. I was there from 9:00 a.m. till about 1:15, when they told me to go eat, and then I had to go back for more pictures of my heart so so did not get home till probably 2:30. If I had known it was all going to take this long, I would have done it in two different days.

    Anyways, I am starting to recover. Just have to make sure not to do too much and crash again.

    I hope your doctors pay attention to you if you give them the information on the impedance cardiography test. It is so insane that we are not believed. It's bad enough being sick.

    Take care -

  8. skeptik2

    skeptik2 Member

    So happy for you and hope the peptide injections bring you around to a full remission!

    The Impedance Cardiograph shows the Diastolic Heart Failure some patients have; this is the opposite of Congestive Heart Failure.

    In DHF, the BP numbers are often too low (like 90/50 sometimes), and indicates I believe, the blood flow into the heart is abnormal.

    CHF is usually connected to high BP (with the lower BP number being too high, even if the top one isn't).

    I've read that Cardiologists are just getting a handle on DHF, so not all of them either know about it, or have ways to treat it.

    Pressure stockings can help keep BP up and blood flowing better. More salt in the diet can help, also. Good fluid intake is very important also.

    Gosh, it seems like years since I posted the Bio-Z company info...thanks for much for bringing it into this discussion!

    Happy Spring Remission!

  9. mbofov

    mbofov Active Member

    Thanks for the info. My doctor did tell me that the bottom number on blood pressure was too high, and that this was symptomatic of DHF (as well as my quite abnormal impedance cardiography results). But my BP in general is not low, it's usually just about right. However, I do eat a lot of salt and drink a lot of water, and I do think I have POTS or a variation thereof - my BP goes down and my pulse goes up when I stand for any length of time.

    Yeah, it has been quite awhile since info about the BioZ has been posted.

    Thanks for your good wishes! I don't even dare hope for a remission, am just trying to stay neutral .... but it's hard when I read about Mikie's good results and now Vicki's ..... we'll see.....

    Happy spring!

  10. Mikie

    Mikie Moderator

    Keeping my fingers crossed that you can begin the injections. Glad you passed your cardio workup with flying colors. I think it's a good idea. I had one some years back just to be sure my heart wasn't involved in my illnesses. Everyone in my family dies of heart attacks.

    My last two injections haven't increased my energy but everything else is going well so I don't know whether they are working. Guess if they weren't, my other symptoms would return and they haven't. I've been sick a long time so it make take a while for the energy to come.

    Please keep us updated and good luck to you.

    Love, Mikie
  11. mbofov

    mbofov Active Member

    Thanks for the info - my numbers actually are usually around 40 points apart, so that's good too. But I do have a heart problem associated with CFS which doesn't show up on standard heart tests, but is really evident on the impedance cardiography. It may be due to low blood volume, I really don't know, but it's all part of the CFS package. I've skimmed Dr. Peckerman's article on this, and it's quite interesting. The worse the results are on the impedance cardiography, the worse the post-exertional malaise, which is my worst problem.

    I'm hoping too, that I can get the shot this coming week. I've been sick for a week now, thought I was getting better and then relapsed. I think it may be a form of the flu, am taking all my natural remedies. I'm just hoping I'll be okay by Thursday.

    Thanks for your input!

  12. mbofov

    mbofov Active Member

    Thanks for your good wishes. I'm keeping my fingers crossed too - I can't seem to shake this bug (have been sick since last Saturday). I'm doing everything I can think of, so hope to be okay by Thursday.

    I know you've said part of your energy problem may be due to your BP meds. Do you think that's still the case?

    Didn't you have more energy right after you started the injections? I remember you writing about how good you felt.

    Anyways, I hope that improves for you soon! And I'll keep you all posted -

  13. mbofov

    mbofov Active Member

    I am looking forward to it, but, unfortunately, I have been sick since a week ago yesterday, I think it's a variation of the flu and I don't know if I'll be well enough to have the shot on Thursday. You're not supposed to be sick when you get it :(

    Re the injection itself - to be honest, I will be very surprised if it helps me. I've tried so many things, taken every supplement that may help, everything in the book except for a major heavy metal detox, which will be next on the list if this doesn't work. I will be astonished if the injection works - I can't imagine how it would feel to have my life back. So am just trying to stay neutral about it all.

    It is sort of a catch-22 because part of my problem is a weak immune system (linked I am sure to CFS), so I have to be well enough to get the shot, which can be a problem.

    I'll decide by Monday I think. If I haven't made any significant improvement by then, will probably reschedule again. grrrr!!!!

    Thank you for your kind thoughts though! I really appreciate it - and I'll post whether or not I'm able to go --

    Best wishes,

  14. mbofov

    mbofov Active Member

    There's a very good chance I got sick because of the all-in-one day testing, for a couple of reasons. First, I crash every time I do more than 3-1/2 to 4 hours of light activity a day. I was at the doctor's for 5 hours total, fasting until almost 1:30 in the day, so that alone was enough to make me crash the next day (which I did). Then, I get sick every time I crash, without fail, only usually not this sick. And yes, the chemical-induced stress test could very well have weakened me even further.

    But I did recover from the physical crash - I don't think this is an overdo breakdown - I actually ran a fever one or 2 days - but it is a nasty bug.

    I've been taking lots of vit. C and a chinese herbal combination which usually works but isn't this time, plus a homoepathic remedy, and finally yesterday started blending a clove of fresh garlic with V8 juice and am going to try that. This bug has screwed up my stomach and makes me very tired and has affected my sinuses too. So I think I will have to reschedule .....

    Have you considered trying the peptide injections? I don't know what your physical issues are - FM or CFS or?

  15. Mikie

    Mikie Moderator

    I did feel so much more energetic when I first started but I know I have more energy than before I started the shots. My friends are all noticing the difference. I may be a bit impatient. I still have to pace myself but I've been doing more. I just don't have that initial feeling of well-being that I enjoyed in the beginning. Hope you're feeling better. If not, it's probably better to delay the shot until you feel better.

    Love, Mikie
  16. mbofov

    mbofov Active Member

    If I had known I was going to be there for 5 hours and fasting most of the time I was there, I would have scheduled it for 2 days. I think I could have handled that, having the stress test, which required the fasting and took the most time, done separately. So if your cardiologist wants to do something similar, find out exactly what he wants to do and how long it will take and then you can see better how to schedule things. Hindsight is 20/20! :)

    I do take grapeseed extract and vitamin e. I am holding down foods, just my appetite was way off but I was able to eat. Last night finally I felt actutally hungry for dinner, which I had not felt in awhile. Today, I'm starting to feel like I really am on the mend but will wait until tomorrow before making a decision about the appt. I still feel somewhat weak, but definitely better, thank goodness!

    I'm glad your husband's appts at least are going well!

    Well, when I finally do start the peptides, and if they work for me, you can also look at Mikie's and halfacre's experiences - it would be amazing if they helped all of us - but if they did, you might want to seriously consider them. I have been sick for so long and tried so many things, like you, and it's all not enough. I spend a small fortune on supplements each month and I'm better off with them, but still don't have a real life.

    Thanks for your concern, and let us know how it goes with your cardiologist -

  17. mbofov

    mbofov Active Member

    I'd probably be impatient too, wanting the initial feeling of well-being. We've all been patient for so long! But I am glad at least you have more energy than before.

    I am starting to feel better, but may still postpone the appt, I'll post what I do -

    Take care -