Impedance cardiography result, I DO have congestive heart failure

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Jan 3, 2007.

  1. mbofov

    mbofov Active Member

    Hi everyone - well, I feel rather stunned. I just got off the phone with my doctor to discuss the results of my impedance cardiography test I had done on 12/14. He said I do have a form of congestive heart failure. I should have taken notes. It's not readily apparent, no swollen legs or anything like that, and an ECG or EKG would all test normal. The test was done in accordance with Dr. Peckerman's protocol (see previous post re impedance cardiography)

    Some of the key things I remember are the differences in stroke index and stroke volume - both of these DECREASED when standing, and he said that was because my heart could not compensate when challenged. Also, the Systemic Vascular Resistance Index INCREASED a fair amount when standing, and I forget his explanation, but this was significant and also indicated congestive heart failure. The thoracic fluid content DECREASED when standing, meaning less blood to the heart, another sign of congestive heart failure. He said that out of 14 CFIDS patients that he has referred for this test, 12 have tested positive for congestive heart failure.

    He has no idea of the cause of the damage to my heart, and no idea of the extent of the damage. Causes could be viral, bacterial, heavy metals, who knows.

    For your information, I have CFIDS, not FM. I suffer from post-exertional malaise (acute exhaustion after exercise), lack of stamina, and so on. I don’t have the pain of FM.

    Treatment is as follows. I’ve already started some of it:

    B-12 shots (hydroxycobalamin from a compounding pharmacy) which I do myself in my thigh - right now it’s 1 cc four times a week (1,000 mcg. per cc); when this prescription runs out, he’s going to increase the dose to 5,000 mcg. per cc, same amount of shots. It’s a high dose of B12 but he said there have been no problems with toxicity. I do think since I’ve started these shots and the d-ribose, that my energy has picked up some.

    d-ribose - 1/2 tsp. twice a day (actually, I’m doing about 1 tsp. a day)

    l-carnitine - 3,000 mg. per day

    magnesium - 1600 mg. a day (same amount of calcium citrate)

    l-taurine, I don’t know the dose yet

    NAC, again, I don’t know the dose.

    RNA/DNA from Nature’s Life - 2,000 mg. a day

    Then in a month he is going to prescribe a form of digitalis called digitoxin (not digoxin). He said it’s an old form of digitialis, has to be made by a compounding pharmacy in Chattanooga. So I’ll start that in about a month. He also said that digitoxin had an added benefit for women in that it helped prevent recurrence of breast cancer in women . I’ve never had breast cancer but maybe this will help prevent it.

    And then after I’ve been on the digitoxin for awhile, he may start another medicine, depending on how I’m doing. I asked him about hawthorn, and he said not to take it, I forget why.

    I started getting sick over 20 years ago with chronic sore throats, fatigue, trouble sleeping. The post-exertional malaise (acute exhaustion after exertion) started about 8 years ago. So this will be very interesting. I’ll post on my progress, or lack thereof.

    I’m still in a daze, it seems too good to be true to finally be able to do something that might really help, although I'm not really glad to think of my heart being damaged. It’s also a little scary at the same time, but IF it is true (see, I can’t quite accept it), I am glad to know about it. I do want to know what’s going on in my body. I do plan to do a heavy metal detox in a few months when I hope to have more stamina, for I think heavy metals have been part of my problem and may have caused damage to my heart.

    Mary
  2. JenniferAnn539

    JenniferAnn539 New Member

    Mary,

    Thank you for sharing the information with us. So sorry to hear that your heart is not functioning correctly. Hopefully your new protocol will help you feel better.

    Please keep us posted on how you respond to the new supplements and if they help you feel better and improve the functioning of your heart.

    All the best.
  3. mbofov

    mbofov Active Member

    Thank you for your kind reply. What I think is really significant is that my doctor, who has several CFIDS patients, said that 12 out of 14 of them (including me) did poorly on the impedance cardiography test. So I think it is quite likely that many of the people on this board with CFIDS could in actuality have a form of congestive heart failure, which would not show up on standard heart testing and is only apparent with the impedance cardiogarphy test. And there is treatment if that's the case. I did a longish post on the testing a few weeks ago which has more information on the test, and Dr. Arnold Peckerman who used it on CFIDS patients, and Dr. Cheney's article re Dr. Peckerman, all very interesting.

    Thank you again!

    Mary
  4. shar6710

    shar6710 New Member

    I've been following your saga since Dec and while it isn't good news at least you have an answer and hopefully with treatment you will feel much better.

    I'm particularly interested in your situation because post exertional malaise is one of my worst symptoms.

    Good luck and keep us posted on your progress.

    Shar
  5. meeee74

    meeee74 New Member

    what made your doc refer you for the test? was it beacause he knows CFIDS patients have unrecognized heart failure or were you having other heart issues (palpitations, diziness, short of breath, chest pains)?

    Glad you got some kind of answer... it's all i want too. Hope the treatments help you. take care.

    Erica
  6. twerp

    twerp New Member

    What symptoms were you experiencing which led your Dr. to do this test?

    I've had several tests on my heart, but not this particular one.

    Thanks & Hugs,
    Twerp
  7. Adl123

    Adl123 New Member

    Dear mary,
    I'm sorry ro hear that you have Congestive Hesrt Failure. I have it , too.

    What a wonderful doctor you have! What kind is he? My Dr.has done nothing at all for my congestive heart failure, except to prescribe some liver-damaging diuretics. He hasn't even made any recommendations. I just try not to get a cold, or let my lungs get congested.

    Good luck with your treatment.
    Terry



    [This Message was Edited on 01/04/2007]
  8. mbofov

    mbofov Active Member

    My doctor has been treating me for CFIDS for about 6 years. The worst CFIDS symptom I had was post-exertional malaise (exercise intolerance, extreme exhaustion afterwards and lack of stamina). As you all know, about the only treatment available has been nutritional supplements, cleaning up my diet, treating low thyroid, weak adrenals, etc.

    My doctor referred me for the impedance cardiography test because of relatively new reserach which shows that many people with CFIDS actually have a form of congestive heart failure. I didn't have any cardiac symptoms.

    But there's an important paper written by Dr. Peckerman in which he demonstrates a connection between congestive heart failure and CFIDS.

    My doctor says that post-exertional malaise itself can be a symptom of congestive heart failure.

    Do a google search for "Peckerman CFS" and read the first two items there. Also, do a search in this board's library for an article written by Dr. Cheney called "The Heart of the Matter" in which he expounds on Peckerman's work. This is why my doctor referred me for the test. I didn't have any palpitations or other traditional cardiac symtpoms.

    My doctor said if a cardiologist looked at me, he would laugh when told I had congestive heart failure. It's not apparent, and it's not typical.

    Terry - don't settle for what your doctor does, which is nothing for you. My doctor is a regular MD but very unusual in that he is extremely knowledgable about nutrition and supplements and only prescribes meds as a last resort. He told last year to start taking RNA supplementation (2,000 mg. a day), that it would help with energy. He also said that a Dr. Frank had done work in the 1970's in which he successfully treated several congestive heart failure patients with RNA (this was before my doctor gave me my current diagnosis). I'm currently taking 2,000 mg. of RNA a day, I buy Nature's Life brand RNA/DNA - it was the best price. I buy the 250-count bottle. Do a google search for Dr. Frank and RNA and see what you find. Also, you may try some of the things my doctor is recommending - see my first post above. We've got to be our own advocates here.

    Mary
  9. Adl123

    Adl123 New Member

    Thanks for the information. I've been on a protocol of megadoses of various supplements for the past 13 years, but I've never heard of RNA/DNA before. I'm going to research it, and get some, if it doesn't clash with anything I'm already taking. Maybe I could actually substitute it for something i'm taking.

    Thanks, again,
    Gratefully,
    Terry
  10. sascha

    sascha Member

    i kept looking for follow-up from you. it is most interesting to hear your results. i imagine mine would be similar. and now i will be MOST INTERESTED to hear results of treatment. i hope it makes big difference for you, and if so, i might try to get on the bandwagon for testing and treatment.

    thanks a lot! and best wishes toward your recovery! Sascha
  11. Forebearance

    Forebearance Member

    Thank you so much for sharing your result, Mary. I'm so sorry to hear about your heart failure.

    I bet I'm going to have a similar result when I do my test. One thing about these heart issues is that they are forcing me to come out of my last bit of denial.

    It's easy to stay in denial, at least a little bit, when no one knows a lot about what is wrong with you. But I have a feeling that era is coming to an end.

    So, as you said, it is a good thing to know what is happening! I hope that the treatments you try will be helpful. I am curious about why your doctor thought hawthorn wouldn't be right for you. I know that doctors prefer to use things they are familiar with.

    Wishing you better health in the near future,
    Love,
    Forebearance
  12. cherylsue

    cherylsue Member

    Thanks for posting. After watching Dr. Cheney's DVD, I am very interested in this.

    Did your doctor feel he could help you heal? Exactly, what do they do to you for impedence cardiomyapathy testing? Tell us about your test - how long, where you had it, etc.

    Thanks for sharing.

    CherylSue
  13. TKB

    TKB New Member

    Glad that you finally got some answers to your symptoms. According to Dr. Cheney it is at least a somewhat treatable problem. My impedance test is scheduled for next week and I will share my results also.

    Just had a sleep study 2 nights ago - that was very difficult as I had a terrible time sleeping - have had this problem for 20 years, though. It probably has an impact on all systems, including the heart.

    I've also recently had a heart rate variability analysis test (a rare test that measures heart rate changes - thousands of times per second based on what we are doing at the time), BP changes,sympathetic and parasympathetic nervous system activity, etc. during various challenges and during a prolonged standing test (sort of like a tilt test without the table). It showed that my heart rate continued to climb as my BP dropped (even after the test ended and I went back to a supine position) and my PVCs overlap as a another heart problem. The neurologist suddenly took me seriously when he saw my test results. Prior to the test he didn't believe in CFS, but changed his attitude that I had real complaints after he saw the test results.

    So, then I decided to continue looking for more answers and based on Dr.C and Peckerman's results - scheduled with a great cardiologist who thinks outside the box and does impedance testing. I am trying to sort out how much of my problems are neurological (my orthostatic insufficiency and orthostatic intolerance) and what is caused by the heart, mitochondria, etc. - and what is treatable.

    What I don't understand is how the d-ribose (a simple sugar)can be so effective for ATP production. My understanding as a dietitian with an MS in Nutrition is that all carbohydrates fuel energy production (are precursors of ATP)- guess I'll have to view Dr. C's DVDs again and/or call a biochemistry professor to sort out some of this mitochondrial question.

    I dropped off Dr. C's DVD to my cardiologist's office the other day. Am hoping he will view them so we can discuss Dr. C's protocol and see what he thinks about them as well as what the impedance test shows.

    I hope other CFS patients can also share their experiences. I learn so much more from patients than I do from physicians.

    Thanks for sharing, Mary and good luck. Keep us posted on your treatment and progress. I'm following in your footsteps with testing and have been using much of Dr.C's treatment protocol already.

    TKB
  14. kholmes

    kholmes New Member

    Thanks for posting this. I'm sure it's a little scary to learn this, but It's great that you know something finally, and are doing a protocol which may very well help. I'm still looking into getting an impedance test done myself, but I haven't found anyone in Albuquerque who will do one yet.
  15. mbofov

    mbofov Active Member

    Thanks again for all your replies. Cherylsue asked about the test itself - it's very non-invasive, they just hook some electrodes on your neck and abdomen I think, and the test is done in two parts, first lying down, and then standing up. The machine just takes readings while you lie there, and then while you stand. It's very simple and easy. And the key information is what are the difference in measurements when you stand up, from when you were lying down. A healthy heart will compensate for the change when you stand; mine didn't compensate very well.

    Download the Peckerman article I described above. It gives the protocol for doing the test, and you should take the article to whoever is going to perform it.

    For more information, see a post by darude dated 1/30/06 entitled "CFS is heart failure secondary to mitochondrial malfunction", I believe he inserted Dr. Cheney's article there, and then I replied to that post (and my reply is simply titled "impedance cardiography") with information on how to find out where you can get the test done. It's done with a special machine called a BioZ and only certain offices them (although there are a lot out there), and that post tells you how to find a doctor with the BioZ.

    I was so fortunate to find a very kind nurse who talked her cardiologist boss into letting her do the test on me, even though I wasn't a patient of his. I paid cash - she only charged me $65. I live in Yucca Valley, a backwater, but there is a cardiologist up here who has the BioZ.

    I'll keep you all posted how it goes. When I saw my doctor last month when he ordered the test, he said he has had some good results with this protocol above. But I was rather dazed last night, and didn't ask enough questions, and want to find out from him where my results fall in the range - e.g., very bad, medium bad, not too bad. So I'm going to try to get more information from him, but it will take awhile to get.

    One more thing - no caffeine before the test.

    Mary
  16. findmind

    findmind New Member

    thank you so much for sharing this with us! I'm sorry to hear you were CHF positive on this test, but so glad to hear you got it done and have some treatment going for it.

    To all the newbies here, search this site for all the info, then call the company; I found out my area has many sites that do this testing.

    I'm going to ask my (new) VA dr. if they do it there...there are a lot of CFS, FM and Gulf War Vets going to drs there.

    Take the best care of you, and please keep us posted...we really care!

    findmid
  17. mbofov

    mbofov Active Member

    Thank you for your kind words. I hope you are able to get the test done as well - keep us posted if you do --

    Mary
  18. sixtyslady

    sixtyslady Member

    My hubby went through this in may of last year, at first they thought he had a stroke, then they thought he had a heaart blockage,which turn out not to be the case.
    then one DR said he had heart failure with only 33% of his heart working.but other heart Dr disagreed, so I purchased a very good book The sinatra solution,by Dr stephen,t Sinatra and we discussed it with his primary Dr and we followed the book, so far so good hes" doing fine, you may want to get the book and read it.
    sixtyslady
  19. mbofov

    mbofov Active Member

    Thanks for the excellent suggestion! I've heard about the book but know nothing about it - the more information the better, and I will look into getting a copy.

    Thanks again!

    Mary
  20. cct

    cct Member

    Mary,

    What a double edged sword these tests can be. We are all searcheing for some definitive answers, but it is so depressing when the tests come back possitive.

    This heart failure diagnosis is frightening.

    A bad heart is the bad news. The good news is that you are very lucky to have a good doctor. He has a plan. He can think. He is helping you.

    Please keep us posted on your progress and treatment. Many of us are being helped by your experiences.

    Blessings,

    Carron