• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. Kathi

    MY BAD REACTION to KEFIR WATER--anyone else?

    I puchased some store bought Lifeway Kefir last week. I think I drank way too much.... at one time. I started getting fluish symptoms...sore throat... I know I overdid it... Now it is a milk kefir and not a water kefir... BUT I have made my own kefir before and only did a little each day...
  2. Kathi

    Anyone done the specific carb diet or GAPS?

    Lisa, I get a really great yogurt from the health food store down the road... I am going to use that as a starter and milk that they can get for me... Kathi
  3. Kathi

    Scott Forsgren's report on the Shoemaker-Nathan-McDaniel Biotoxin Illness Conference

    My friend just ordered the drops yesterday, so that is not entirely true. Kathi
  4. Kathi

    Anyone done the specific carb diet or GAPS?

    I loved homemade kefir with goat's milk and grains.. I felt really good on it. Several of my dogs liked it too. I stopped for awhile... but that is another story. I have purchased a yogurt maker and will get going with that soon. I loved some yogurt I got at the Health Food store a few...
  5. Kathi

    Scott Forsgren's report on the Shoemaker-Nathan-McDaniel Biotoxin Illness Conference

    Mine was prescribed to me by a doctor and was not the homeopathic drops that many have used over the counter. I did hear the drops were somewhat questionable. The shots were absolutely essential to my being able to tolerate the 500 calories. I did this a year ago this week, actually. I felt...
  6. Kathi

    Scott Forsgren's report on the Shoemaker-Nathan-McDaniel Biotoxin Illness Conference

    HCG is human chorionic gonadatropin. I learned about it from a girlfriend. It has been all over television last year..all the talk shows. It is safe for both men and women. If you are interested google up Dr. Simeon and some of the HCG support groups on line. Dr. Simeon gives you the history...
  7. Kathi

    Heart Attack from CFS Treatment

    Sing your words are very very meaningful to me and I take them to my heart. This illness is difficult enough, you don't need misguided doctors messing it up more.... as they have done to me. Monies are tight and I have seen some people lose their homes because they paid for care at the Fibro...
  8. Kathi

    Scott Forsgren's report on the Shoemaker-Nathan-McDaniel Biotoxin Illness Conference

    Interesting that Shoemaker is talking about HCG... I had used HCG shots in February/March 2011 before going for testing in August 2011. What exactly did he say about it??? I, myself, heard about the HCG diet from a friend. I lost 15 pounds on the HCG diet, while doing the shots. It is a...
  9. Kathi

    Heart Attack from CFS Treatment

    Sing, I did go before the CFS Advisory Committee last May10,2011 with the message of what happened to me. I try to speak out when I can...
  10. Kathi

    Heart Attack from CFS Treatment

    Esther12, thank-you for your concern. Let's just say the heart attack did nothing to improve my condition, that is for certain. If anything it has been like climbing out of a well with oil slick hands. My EF is now at 35-40% ( 55%-75% normal) , so I am out of defibrillator territory. The left...
  11. Kathi

    Heart Attack from CFS Treatment

    I responded to a post on CFS Experiemental that I thought should be here. It is in response to a person questioning CFIDS/ME care in the Pittsburgh area. It started with the F&F Centers and then it proceeded to Dr. Teitelbaum's care. Being that Dr. Teitelbaum is resuming patient interaction I...
  12. Kathi

    Fatigue and Fibro center information?

    If you go back in the archives of this site, you will see my post on how Dr. Cheney said the Fibro and Fatigue Center in Pittsburgh caused my heart attack and put me in heart failure by giving me medications without slowly ramping it up. Dr. Cheney said it was blatant medical malpractice. Kathi
  13. Kathi

    Article: People With ME/CFS Protest in Front of Department of Health and Human Services Building

    The process moves too slowly for hurting, sick, fiancially strapped people. I am a late comer on this scene, but knowing that it has gone on for years without major progress bothers me. The Department of Health and Human Services holds the cards and deals them as they see fit......... Would...
  14. Kathi

    Article: People With ME/CFS Protest in Front of Department of Health and Human Services Building

    I will do this.... it might make more of an impact than my speech on Tuesday... I believe I was speaking to the choir .... they even said so themselves the next day. What does it take to make things move in Washington DC?? Perhaps the protest route............ When Director Federline refused...
  15. Kathi

    MY WASHINGTON DC TESTIMONY ON MAY10,2011

    Honestly, my impression is that we are speaking to the choir at these meetings. I think they are as helpless as we are....and their hands are tied. I listened to the Director of Social Security about getting our CFS diagnosis into their " blue book" for adjudicators..... His response was that he...
  16. Kathi

    MY WASHINGTON DC TESTIMONY ON MAY10,2011

    NIELK, sometimes you have to speak up more than once for them to get the message. I will continue to do whatever I can do so there is understanding on this aspect of CFS. Love your quote.... it sure put a smile on my face when I read it.
  17. Kathi

    MY WASHINGTON DC TESTIMONY ON MAY10,2011

    If I can do anything so someone else doesn't experience what I went through and am going through now, it needs to be done... There is no excuse for what happened to me and it could have been prevented. Hopefully it will save someone ... somewhere.... before it is too late... We all have to do...
  18. Kathi

    MY WASHINGTON DC TESTIMONY ON MAY10,2011

    Kathleen Varacallo Manganaro This is the link to my CFS Advisory Committee speech on May10th in Washington, DC at the Health and Human Services Building. http://www.youtube.com/watch?v=TkUVlQNQGB0&feature=channel_video_title
  19. Kathi

    Heparin Injection Therapy

    I found heparin shots to be very helpful. As a matter of fact when the Fibro and Fatigue Center caused my heart attack, the plus from the catherization was that it caused my sore throats to abate. This is after a several years. Heparin inhibits NF Kappa B. I take them on occasion and still find...
  20. Kathi

    Heart Attack from CFS Treatment

    With all that being said,I am not sure how the mold factor plays into this. Do I have an illness that is affected by mold .....that never showed up until I was exposed to mold OR do I only have a mold illness alone???? I haven't been XMRV tested, but I ponder this issue every day when I am...
  21. Kathi

    Heart Attack from CFS Treatment

    I think the worst part was afterwards.......I thought Dr. Teitelbaum wanted to help me and asked for my medical records from the MI. So I sent them to Hawaii for him to review. ( Remember I was still under the belief that he was the only CFS doctor at the time and was afraid to go to any other...
  22. Kathi

    Heart Attack from CFS Treatment

    It is very unfortunate that our medical system has caused this to happen to suffering people ..... we search for answers and are desperate for whatever help we can get. This post was meant as a warning....... I went with only a few years under my belt of being terribly sick. I think one of...
  23. Kathi

    Heart Attack from CFS Treatment

    Mya,I bumped this up because there are new members that come to this site and I wanted them to have a chance to see it. I didn't post it under "Doctors" and it can get " lost. " There is one other person on this site that went to the Fibro and Fatigue clinic and she had atrial fibrillation...
  24. Kathi

    Heart Attack from CFS Treatment

    Just bumping this up... I should have had it moved to the new doctor section, as it has gotten lost here....
  25. Kathi

    Dr. Teitelbaum's Fibro & Fatigue Center Doctor Causes HEART ATTACK

    Sorry , I haven't responded sooner. I have had very good success with Ubiquinol for my heart. I take one that does not have soy in it by Douglas Labs. I was taking 300 mgs of ubiquinone and am able to take only 100 mgs of ubiquinol and have the same effects. What a bonus. I do not take any heart...
  26. Kathi

    Dr. Teitelbaum's Fibro & Fatigue Center Doctor Causes HEART ATTACK

    Sicktoolong, you can read more about my story in the general treatment section. There were hearly 90 replies on that thread. That's where I started it when I first came to this forum. There wasn't a doctor section. They added it later and I guess I should have put it in here..... I am still...
  27. Kathi

    Dr Teitelbaum & LDN

    Cort, I was not tested for the things that you mentioned at the Fibro and Fatigue Center. I had been following protocol for a year before going to the F&F Center and Dr. Pierotti thought I was a hormone only patient. Suffice it to say I have been officially diagnosed as having CFS and WAS NOT a...
  28. Kathi

    Dr. Teitelbaum's Fibro & Fatigue Center Doctor Causes HEART ATTACK

    Travis, I am very interested in what your friend has to say about Dr. Pierotti and other things you have heard ( other than my own horrific story) He bragged to me that he used T3 in the ER for heart and emergency patients and had the best record of all the ER doctors..... Well , when you tell...
  29. Kathi

    Dr Teitelbaum & LDN

    Dr. Teitelbaum's Fibro and Fatigue Center put me in congestive heart failure because they gave me too much T3 thryoid medication without slowly ramping it up. I had a major heart attack as the result of being seen by a doctor on PA licensing probation for passing himself off as a board certified...