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Everything posted by someonewhocares

  1. threelac can be purchased many places online - it is a 'probiotic' - it contains healthy bacteria that normally live in your system and compete with candida for resources. Usually these healthy bacteria win out against candida. However, taking antibiotics can cut down on the healthy bacteria, and does not affect candida. It seems like if this stuff helps that much, live yogurt cultures would help just as well. I've read that candida problems can also occur aftere a sever viral bout like epstein-barr because of the heightened activity of the immune system destroying large amounts of 'good bacteria' Remember, I am not a doctor nor am I qualified in any way to make these statements - just what I've read. It also looks like many doctors do not accept the existence of this problem or try to diganose it. Either that, or they're right. When my girlfriend went into the hospital and was diagnosed with CFS a few months before she was diagnosed with POTS, she had epstein-barr. A few months later, she got thrush (oral candida infection) and had a relapse. she was rushed to the hospital and diagnosed with POTS. just searching for anything that might help lessen her symptoms. After recently declining back into pretty severe POTS episodes she has recently gotten a severe case of thrush and hand foot and mouth disease. both fungal, which indicates a lack of beneficial bacteria. Worth a shot? why not. I'll try anything at this point.
  2. starting to look like CO or Candidasis is just something somebody made up to make money... or at least its existence isn't clinically proven.
  3. Has anyone ever researched Candida Overgrowth or any other form of dysbiosis as a possible cause for their symptoms? has anyone tried treatment? I almost hate to bring this up because it sounds so crazy, but the symptoms are definitely there...
  4. and one more thing - does anybody know how to get in touch with the people who run potsplace.org? I've made the causes and what helps and what hurts pages into word documents for "The Binder" but I'm not sure if it's OK to put links to those up here and redistribute the information. Thanks!
  5. In talking to doctors and looking around here, I think one of the biggest issues is that there are so many causes for POTS symptoms that doctors may have a hard time getting all the research together or all the info in one place. I'm certainly not trying to step on your doc's toes, but I came up with something for Frances that might help everyone, including the doctors. I put together a worksheet with all of the reasonable causes listed on potsplace.org, some notes about each one and what to look for, and the tests that might be used to determine if that is the primary cause of your symptoms. Here it is in excel format, ready to print out and be put in a binder or folder: POTS causes and tests worksheet just in case some of you don't have excel (I don't know if this one will print right), I've also made a PDF of it: POTS causes and tests worksheet - PDF PLEASE give me feedback, comments/suggestions, ANYTHING to make it more useful or correct any mistakes. I can't promise that it will be updated in a timely fashion, but I'll do it as soon as I can. My e-mail is gordoodle@hotmail.com I'm working on a treatment sheet right now as well. This one is a little more complicated, so it might take a while for me to get it done. It needs to include interactions and side effects. Also, an important question: While we're trying to pin down the diagnosis thing, I'm thinking about putting together a template for a symptoms journal so that people can write down how they were that day, what they did, etc. - an interested doctor might be able to get something out of it or see a pattern. Here's my ideas so far: date scales of 1-10: chest pains aarrythmia tachycardia dizziness fatigue headaches fainting blood presure and heart rate if taken, at what times... What you ate What strenuous activities you performed how much sleep you got fluid intake?? I'm not sure - it seems like a lot to keep on a daily basis, but I think it might help even if kept sporadically. Can anybody give me any tips on how to do this so it's convenient and easy to keep up? Maybe needs to ask for less info so you don't feel like lab rats some days? Let me know if there's anything I can do to improve on this! - Gordon
  6. Hey there everyone! I am this girl that someone who cares was asking about. I am a co-moderator on the Va. forum with my friend Pam. I feel kinda funny saying that I am a co-moderator now that my weaknesses have kinda been revealed. I am not upset with him for posting this at all. I am impressed that he made the effort to join this web site and ask for people's advice b/c my marriage was definitely affected by my illness and that is one of the main reasons it failed in the end. Frustration is probably the main word I can use to describe what's going through my entire body at this point. Dr.s either don't believe me or don't know what to do. Different dr.s tell me conflicting information with other dr.s. Some dr.s doubt my sincerity in how much it affects my daily life. For example, I was hospitalized this weekend and asked the dr. about disability b/c it has caused me to not be able to work for almost a year now and his response was, " Yeah, your cardiologist should fill the papers out for you b/c some people are TRULY disabled from this." Felt like a backhanded slap in the face. A lot of times when I feel like the dr.s are being harsh on me, "Someone" is like I liked him! And I'm scared to tell him that he made me feel tiny b/c I don't want him to think I am looking for pity. That is my main concern. Communicating exactly how bad I feel b/c I don't want people to think I am just seeking attn. I have had a LONG history with health issues. A life-threatening heart problem that was mis-diagnosed as being "psychosomatic" for four years until they caught it on a night that they told me I would've died if I wouldn't have called an ambulance. So I am very sensitive when I feel people don't believe me. I do try to keep myself hydrated, but b/c I'm being forced I literally feel like I am drowning when I drink. I don't drink alcohol all the time. When I do, it's just b/c I feel like being a normal person for a few hours. I know this "someone" loves me and I appreciate him more than he knows. I just feel like he's coming down on me when he's really trying to say he cares. I guess my reccomendation for him would be to choose different words. I love him very much. Frances
  7. She's already seen the website, and I'm not sure if she would appreciate me posting this. It seems like no matter what I try to do to help, I'm going about it the wrong way. I've been to her doctors with her and in the hospital with her several times. I've advised nurses and doctors on her mdicines and history when she wasn't capable of doing so while in the hospital. She gets very angry with me when I tell her to stay in fluids or take medication or not drink alcohol. Sometimes when she doesn't listen it lands her in the hospital or not feeling well, and it interferes with our relationship. I guess part of my caring and trying to help is selfish - I know she can be a more responsible member of the relationship if she takes care of herself. She just feels so helpless sometimes and I don't know how to help because I know what she can do to better take care of herself, and sometimes she just doesn't do it. How do I tell her that I think she could take better care of herself without offending her? She gets angry when I just suggest that she could drink more fluids, etc.. How do I get her to accept that this is not going to go away and that she needs to be vigilant when it comes to medication and fluids? Whenever I tell her that her not taking care of herself is interfering with our relationship and with her life, all she hears is that I think she's using her illness as an excuse. Maybe I'm not communicating in the right way - can anybody help me with their experiences? Thanks!
  8. A really good friend of mine has been diagnosed with POTS and I am trying to help her fight this illness and win. I have been understanding about the illness, but my family has always been the 'walk it off' and 'fight throught it' types. My way of understanding has often been to tell her that she can make it through if she tries hard enough and pushes through with bad doctors and bad experiences. At first, things were going very well and we have made some positive changes in her medication and attitude about the problems. Lately, I think she has started to feel helpless against this overwhelming problem and has started to resent my positive attutude - thinking that I don't believe her and that I think she is just making excuses for not doing things or getting work etc.. I have some questions for the forum - 1) how do I make her understand that I do believe her 100% and that I just want to see her own personal strenth and ablity yo overcome this in the long run without making her feel like I am downplaying or minimizing the problem? 2) How can I help her overcome this and live as well as possible? I've been to doctors and to the hospital with her and done as much research as possible. 3) How can I get involved in this community more and make the medical field aware of this for her and others? 4) What am I doing wrong in making it clear that while some others don't believe her, that I believe her and just don't want her to give up on herself? This is very hard for me and her, and I appreciate any feedback that anybody can give me to help me understand something that I know I will never truly understand. Any stories about your own experiences are very welcome. I know you've all tried to maintain relationships in the face of this disease and I want to know what you've run into so that I don't make the same mistakes that some of your spouses/boyfriends/girlfriends have. Thanks for all you help! This forum is so uselful for her!
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