LindaJoy

Hi, everyone. I saw this doctor, in another state, last month to be tested for ME, thinking that may be the root of my health problems. This doctor is supposed to be a top ME doctor in the US. After seeing him in his office and doing some testing with him, a week later, my eating got really bad again and I had to go into the hospital for ten days, so I missed my follow up with said doctor to go over my lab results. Since I got home, I haven't been well (as many of you have read), so I haven't been able to drive the hours it will take to see this doctor for my follow-up. Thus, we've been trying to get a hold of him over the phone to explain my situation and see if he had any findings he would be willing to share over the phone, but he refuses to talk with me about anything until I meet him in his office again, which, as I said, is in another state! After weeks of trying, my husband did get him to fax the results. Sad to say, though, he didn't give any interpretation with the results, so I have no idea what they mean. I've looked up the one and even had my pcp look at them. She's not too sure on them, either. Anyway, I tested positive for two things. One was a pneumonia antibody. My pcp said that this respiratory flu I had around the time I had this testing done could account for that one, and since I don't have a breathing problem now, she's not concerned with that one. But, the other one I tested high on was Human Herpes Virus 6 IgG. Anything above .99 was considered high / positive, and mine was 11.1. To me, that's pretty high. Now, there was a Human Herpes Virus 6 IgM taken, too, and it was normal. The way my pcp read this was that, yes, at some time in my life, I had HHV-6. She said almost everyone gets this, so we all have the antibody. She then said the IgM shows if it's active or not now, or has been active recently, and since it was normal, no, I've had no activity lately. I looked this up on the internet, and I really don't understand what they're saying, at all. I got on the HHV-6 Foundation site, and to me, it seems that the way my pcp read the test results is wrong, that the IgM doesn't really matter where HHV-6 is concerned, that is your antibodies are above 1.6 or so, that is considered high and you are considered to have active HHV-6 disease. Does anyone here know anything about this? I think I read, or heard, too, that having active HHV-6 can cause autonomic problems. I'm just wondering if this could be the bottom line for my health issues. Can any of you help me to understand this? I wish my ordering doctor would talk to me about this, but he won't, and my poor pcp, wonderful as she is, just isn't familiar enough with this high end testing to feel comfortable with her interpretation, which doesn't seem to be accurate. Thanks, everyone. Linda

Thank you, everyone. Thank you, CC101. I'm sorry, I feel badly because you all are being so supportive, but I can't bring myself out of this funk. I'm down to sipping elemental formula again as I'm having severe reactions every time I eat, the clonidine patch not helping at all. And, last night's events didn't help any. Between my health and my lousy relationships, my life just plain stinks. Long story short, I don't see my granddaughter very much, once a month or so. My daughter brought her by for about an hour last night. Since the baby is so young (21 months) and hadn't seen me for over a month, she didn't know me at all. It broke my heart. While there, my son-in-law asked if I was going over to my sister's house the next day for a big family garage sale, something we do each year together, of which I wasn't even told about. My whole family was gathering at my sister's house, and I wasn't even told about it,or given the opportunity to go. I already feel like a leper where my family is concerned because they all do stuff together all the time without me, because "Linda's sick...again." Did I ever tell you all that my mom was called to go to the hospital one time, the doctors thought I was going to die, and she said she and my brother couldn't make it because they were leaving for Disney World the next day? When I got upset about it, my whole family said they thought I was selfish and a ***** I called my daughter one time, who is a nurse, to be with me as the ER doctor was going to do a spinal tap and I was terrified. She said she was too busy baking a cake. To top it all off, my son, whose girlfriend had a baby three weeks ago, called and told me they had been in town for a doctor check up (they moved two hours away, but they've yet to get a doctor for the baby in their city so they are using a pediatrician here until they can find one there) and he never even told me about it so I could meet them somewhere and see the baby. He acted like it was no big deal that I hadn't seen his son, my grandson! I think, "What is wrong with these two I raised?" My son told me once, "Mom, you used to be hands on. Sometimes, too hands on. Now, you're not hands on at all." They don't get, I'm still here. I still think. I can still talk and play games and play movies. But, since I can't go out to eat, or go shopping, or go on vacations, or go to craft shows or ballgames, like they all like to do and do together, they pretty much ignore that I even exist. I wouldn't mind so much except that I have no friends left anymore, either, for the same reasons, so I pretty much have no one, except my husband who, like I said earlier, takes care of me but doesn't do it without letting me know how much of a burden I am to him and how unhappy he is, and how happy he used to be before he married me, etc. I honestly have no incentive to get better, except what I find with myself. I don't know that I can find it myself. That's why I talk with all of you. You at least understand, and I don't hear, "Oh, Linda, you're too sensitive." Or, "Oh, Linda, you're so selfish." or "Oh, Linda, you just need to keep going, like the rest of us do," that my mom says to me all the time. I am sensitive, I'm not selfish, I'm sick, and I do keep going, it's just hard. Take care, everyone. Linda

Thank you again, everyone, for being so supportive. Honestly, I was a bit hesitant to post my feelings here. They're just too horrible right now. But, you've all made me feel okay that I'm feeling this way, and not alone in it as a lot of you have felt this way, too. I'm sorry that you have. It's miserable. Katie, thank you for the lead on Dr. Shoemaker. I looked him up and then called his office. They're sending me a packet so I can look at what all he does and then, maybe, set up an appointment. I've cried less today, so that's a start, I guess. Thank you for being here, you all. Linda

Thank you, everyone, for your words of wisdom, encouragement and compassion. You are such a great group of people. I appreciate all you're trying to do for me. I just can't stop crying. Really a very, very bad day. Songcanary, I understand completely about not wanting to wake up tomorrow. That's pretty much where I'm at right now. It's been seven years of this. Honestly, I think I could handle all the lousy, horrible daily symptoms of not feeling well if I could JUST EAT! Anyway, just wanted to say thank you, everyone, for caring so much. I feel so empty, though, that it's just not sinking in yet.

Hi, everyone. I'm sorry to be so down and to come here with it, but I have just about had all I can take. I know many of you have been with me since the beginning of my illness, and you've see all I've gone through with trying to get a diagnosis (still don't have one), with trying to eat each and every day, with just trying to survive. Today is one of those days I just don't see any light at the end of the tunnel, and I've run out of hope and don't see any sense to continuing with any of this. Again, can't eat without terrible reactions, am on a clonidine patch that seems to just be adding its own symptoms to my pile of existing ones without really helping my problem, can't stay away from the toilet the diarrhea is so bad, am nauseous, in pain, have yeast infection and sore bum from all the diarrhea, etc. I just feel like absolute crap and can't take it anymore. I was standing in the shower this morning, picturing myself talking with a therapist. I've been to enough of them to know their questions by heart. I heard the imagined therapist say, "Linda, what do you do for fun? What makes you happy?" And, you know, I could only think of one thing, and that's the few hours every other month I spend with my granddaughter. Other than that, I don't have one thing that makes me happy. And, I never have fun. Just coming to that realization made my depression even worse. When I was in the hospital this past week, again, for ten days, the doctor suggested that I talk with a therapist. I laughed and said, "Been there, done that, won't help." She said, "Why won't it help? A therapist can help you to cope." I thought, "Cope with what? That every minute of every day is a struggle, that I never feel good at all anymore, that I have to spend most of my time just trying to survive, just trying to find something to eat that won't send me into terrible symptoms that I just can't take anymore? What can a therapist do for me anymore? Talking just won't get it, or anything, anymore." I told my husband that talking with a therapist anymore, for me, is futile. It's like holding a loaded gun to someone's head and having a therapist talk them out of the anxiety the situation is causing them. The answer is not talk, it's taking the loaded gun away. Food, for me, is that loaded gun. All the talk in the world anymore is not going to take away the fact that every time I eat, that food could send me into an episode that feels like the end of the world for me, and most times does. I just can't handle any of this anymore! And, what makes it even worse is that I have no one I seem to matter that much to anymore. To my husband, I'm an albatross around his neck. To my kids, I'm no longer "Mom" so they've made other arrangements for maternal support. To my family, I simply don't exist anymore. And, I have no friends. I am not exaggerating my relationships. Again, I look at my life and think, "Why in **** am I putting myself through this every day when I truly have nothing in my life worth suffering for?" You all here have been my life-line for 7 years. Whenever I needed to ask a question or just cry, you all have been here. I don't want your sympathy now. I just needed to vent to people I know give a ****. You don't even have to respond. I know most of you have been there, done that, too, and I just don't know what to do anymore. I've lost my heart, my soul, my faith, my dreams, my hope, and I don't know, really, what I have left. I can't see much of anything that's good. I know this has to be one of the most depressing posts ever put here. Moderators, if you feel this is too depressing, please feel free to yank it. I don't want to upset anyone, esp. newbies. For all you newbies who don't know me, don't worry--I have more than POTS that's making me so sick, so if you have POTS, you won't necessarily get like me, so please don't start to worry. You don't need that! Anyway, thanks for bringing your hearts and compassion here every day, for all of us to benefit from. You all have kept me going and trying for so long, I thank God for you. Take care, everyone. I hope there's a cure for all of us one day. Lindajoy

Hi, Issie. I just started clonidine within the last week. Mine is the patch, and I'm finding side effects, as well. I'm a bit more puffy, too, but not too bad. I think all of my additional issues are due to the clonidine blocking DAO in my gut, causing me more histamine, which is causing my itching and other allergic symptoms. I'm finding myself taking more and more of my antihistamines. I don't know if I'm going to be able to continue on it. Have you noticed any nose bleeds with yours? I've started those, as well. I'm sorry I can't be of more help to you with your question. What I've learned, though, over the years is, even if it isn't a noted side effect, if you are experiencing something different in your body after starting a new medication, then that is YOUR side effect and, should it continue and be too uncomfortable for you, then you must stop the medication. For example, I went on a mast cell stabilizer a few years ago. Right after starting it, I went into kidney failure. For six months, my kidneys continued to be impaired. No one could figure out why. I kept saying, "I started this new medication and then my kidneys went south," but all I got back from docs was, "But, that is not a known side effect with this medication." Since the medication wasn't doing a thing for me anyway, I stopped it, and low and behold, my kidneys got back to normal. To this day, not one doctor will say that medication caused my kidney problem because it wasn't a known side effect, but I know. I, just little ol' me, can't handle this medication. Take care, Issie, and just listen to you. You'll know when enough is enough or if you can handle this medication. (I think I need to listen to my own advice!) Linda

Yeah, I've been thoroughly tested by two mast cell experts for mast cell disease, and both say no. I have to wonder, though. I got this last night after eating supper, and I took a Claritin, just to see, and within 30 minutes, the sensation was gone. I'm on a clonidine patch right now, and it blocks DAO in the gut, which breaks down histamine, so I'm finding myself using my Claritin more and more after eating. Doesn't all of this just stink to high heaven????!! I'm so sick of it. Thanks for writing. Linda

Hi, again, Kayla. I just wanted to say that I wake up with terrible head pain and feeling like I've been hit by a truck some mornings, and I really think those are the times when my bp has dropped pretty low while I've been asleep the night previous. It's kind of funny, when I'm in the hospitals sometimes, I'll have nurses wake me up in the middle of the night to do my bp and it will be 70's over 40's, and they freak out and get the doctor on the phone right away who insists on more IV fluids immediately, etc., thinking this will help. Uh, nice try and I appreciate the thought, but it never helps. This is just me, sad to say. I'm sorry you're having to deal with this. I know what 70's over 40's feels like. I do okay at 80's over 50's, but the 70's over 40's, I can feel, and it isn't a good feeling. Hang in there. Linda

Hi, Potsgirl, Yes, I was told that, since my bp is low to begin with, and everyone drops their bp at night, those of us with an already low bp will drop pretty low. Lying on your side makes the bp go even lower--I was told this by tons of nurses in the hospitals I've been in, who won't check my bp if I'm lying on my side. My bp used to run 90's over 60's religiously for years, until it was found I have Addison's disease and was put on hyrdrocortisone. Since then, I've been able to maintain around 106/70. Not much better, but a bit. Now, I've been put on clonidine to try and help with the terrible reactions I have after I eat, that my docs think has everything to do with my autonomic dysfunction, and my bp is back to being a tad bit low. In other words, Kayla, I feel your pain. I'm surprised, though, that your meds continue to work for you even when lying down. That is weird. How much salt do you take in each day? Can you do salt? Sometimes it can help bring your bp up. I've never noticed it work for me, but.... Take care and hang in there, hun. Linda

Hi. Does anyone else here feel a temperature change in your lower legs after eating? Sometimes I feel cold. That's usually when my feet follow suit and get cold and turn blue. Other times, like tonight, I feel warm and look a bit mottled. Anyone else? And, if so, what on earth would cause this? Thanks. Lindajoy

Hmm....mine was done at Cleveland Clinic without IV. Probably would have felt a lot better during the recovery period had I been able to get IV fluids. Thus, I felt like absolute crap for quite awhile afterwards and am totally terrified of this test now. I know another TTT is in my immediate future, as my new doctor is setting me up with an autonomic specialist to see where my autonomic disorder is at. Hopefully, this doctor will take care with some IV fluids at the ready. Linda

Naomi, I'm sorry you're having to go through a change, but as you then said, it may be a good thing in disguise. I've been dropped by so many of my doctors over the years, I am honestly numb to the rejection anymore. I now have a new allergist that I'm just crazy about. He listens to all of my symptoms and is really trying to find a way to help me. He's the best doctor I've been to in awhile, and while I like my pcp, she just isn't too up on any of this autonomic stuff to really be of any help. My last pcp told me I was at the end of my life and sent me home to die, as did the last internal med. doc I saw in the hospital. Needless to say, I was glad to get away from them! I hope you find a new doctor who is supportive, knowledgeable and good with testing and planning. Good docs are truly hard to find, but when we finally come across one, what a good day. Linda

Oh, I hate this symptom! Yes, that's exactly how it feels, like a cell phone buzzing. Mine usually starts in my gut or legs and can go on for hours. It drives me crazy. I have no idea what causes it, but I know, when I'm having this symptom, that all of my other symptoms are going to go out of control within short measure, too, esp. the symptoms I have after I eat. Linda

Hey, Chaos, where are you getting your TTTs that they take such careful care of you? I've never been put on an IV, ready for fluids and other things should I get into a bad situation. That would really help to make me more comfortable in having to have this test again if I thought that medical personnel were actually "at the ready." Linda

Honestly, I have to think that Pots, and other auto-immune disorders, are caused by a virus, a cell problem, something doctors just haven't figured out yet, because the more people I talk with who have chronic illnesses of unknown origins, were very active people before they got sick. Then, they got a flu, or had a surgery, or took a medication that didn't agree with them. All of a sudden, they have POTS, or fibro, or lupus, or CFS, or some other illness that's chronic and / or considered auto-immune. All I know is, I was a healthy, active, "normal" woman before I had my gallbladder out in August of 2004, then got the flu in January of 2005, took an antibiotic I had a very bad reaction to, then just couldn't get better. I was sluggish, had pain, had tachycardia, GI problems, etc. I ended up being tested for POTS in February of 2005 and was found to have severe POTS. I just ain't been right since. Linda

P.S. My 26/24 bp on that first tilt table has made me pretty scared of this "simple" test. I think I would rather have paps than tilt tests. I've heard that, if your bp goes too low on this, you could possibly not recover, that, for those of us with autonomic dysfunction, this test could be very dangerous. Is that true? Hence, I try to avoid them. Linda

Mine dropped to 26/14, and I was still coherent. I felt like death warmed over, wanted to vomit, was crying over and over "I don't feel good, I don't feel good," and thought I would die, but I didn't pass out. This was with my very first tilt, in 2005. This is the one that got me diagnosed with POTS, but with every other orthostatic test nowadays, my bp goes up, not down. I just had a doctor, two days ago, say, "Your Dysautonomia has changed over the years, hasn't it?" I said, "Yes!" I was glad to see somebody finally noticed. So many doctors still expect me to have low bp with POTS every time, etc., all the textbook stuff, and mine goes up most of the time, now, but I still get the tach with a higher bp. Everyone is different when it comes to what finally causes them to pass out. I think, too, it may not matter so much the numbers on the bp machine as it does the body's ability or inabilty to tolerate the fluctuations; ie, how quickly the numbers fluctuate, or simply that they do. Linda

Hey, Ramakentesh, Could you say a bit more about the cerebral autoregulation abnormalities and the trying to amp up the NE levels... I've not heard these things before as way of explanation for why I'm going so cold and blue all the time anymore, even in a warm room, esp. after eating, so I'm very interested in what you know about these things, if you don't mind, of course. Thanks. Linda

Hey, Potluck, That's too cool about Billy Blanks. I used to do his hour and a half video every other day, and I felt sooo good about myself that I could do it as it was pretty demanding. Of course, while I was doing it, I continually thought that I would die, or ask myself why I was being so stupid, etc., but it made me feel like I was pretty strong and healthy when I was done. His adopted daughter: was she caucasion, with short dark hair and appeared on many of his videos? If so, I really liked her and could follow her directions pretty well. Don't you all just get so tired of hearing doctors say that POTS is caused by deconditioning, and if we'd all just get out and move, we'd be so much better? I've been told that by so many doctors, it's not funny. I always, always, always have to tell them, "Look, when I got sick, I was healthy. I ate healthily, I worked out (and I go down my list of exercise routines I did faithfully each day), I worked a 60 hour a week job, I was happy---normal. I did not sit on my bum for long each day. And, I still got down with this disorder, so please, doctor, tell me something that makes sense in my world, with my experience. Actually, I was diagnosed with POTS years earlier, in 1995, when I saw an endo at Cleveland Clinic for a pituitary tumor, who did orthostatics on me and said, "Oh, you have POTS." I asked him what that was, and he basically said it was nothing and moved on. I didn't think anything of it since he didn't make a big deal about it. During that time, I was exercising a lot, biking about 20 miles a day. I was actually a bit obsessed, I think, but at no time, when my POTS was a big concern, was I idle.

I've been hospitalized 85 times in 6 years, and in the ER a heck of a lot more than even that. I usually get an IV as I'm usually dehydrated (even though I drink a lot, between having Dysautonomia and Addison's, and being on steroids and all the other meds, I'm usually a bit parched). Usually, I only go when my eating problems are back (I can't eat even one bite of any food or one sip of my elemental formula without going into what looks like shock), so they rest me for a bit, then we re-introduce foods until I'm able to eat a couple without looking and feeling like I was about to die, then I go home. Oh, they usually try me on meds while there, to calm down my system. Nine times out of ten, I go home worse than when I went in. Linda

I get like this when I'm not well with my conditions, but worse, the feel of food in my mouth can make me sick. It's not the taste, smell, or anything else but the simple feel of the food. I don't know why I get like this, but it's happened a lot more frequently as my medical conditions have gotten worse, especially with foods that are creamy or smooth. Anyone else get sick from the feel of food in your mouth? I can actually be hungry and have the food look and smell good, but then, when I start to chew, or with creamy food, once the food is swishing around in my mouth, I want to vomit. I have to get the food out of my mouth quickly and just drink water for awhile. Weird, huh? Linda

When I first got sick, and my POTS was really bad, I used to put my feet directly into our fireplace, by the flame, to warm them, and it still didn't help. I know, stay out of the fire, but I'm okay, no burns. I also noticed, that first fall of my POTS, I couldn't sit at football games anymore. I would get so cold, I would go into major anxiety. The only way I could warm up and stop the anxiety was to get a hot bath. I'm still that way. My feet and hands turn blue a lot, with cold and after I eat. My vasculitis doctor said I have acrocyonosis, but he doesn't know why. My docs now think it has everything to do with autonomic dysfunction. I freeze in the freezer section of the grocery, too, and the last time I got a blast of cold air from an air conditioning unit a couple of weeks ago, I couldn't stop the shaking it caused and ended up having to take extra hydrocortisone because it sent me into an adrenal problem (I have Addison's). In other words, me and the cold aren't friends. Linda

I was doing tae bo five days a week, lifting weights three days a week or so, biking miles at least three to five days a week, starting yoga ball, working a 60 hour a week job that I loved, and walking five miles each night with my husband. I was absolutely not de-conditioned when I became ill with Dysautonomia. Mine came after having a severe flu, then going on an antibiotic that sent me into severe, severe tachy and landed me in the hospital (Avelox). I ain't been right since. Linda

Hi, everyone. I've had POTS diagnosed since 2005. Yet, I've never heard of high flow, low flow, normal flow POTS. Could someone explain this to me. Sorry if it's all here, but I can't find it in explanation form. Does this have anything to do with being hyperadrenergic? Thanks. Linda

My legs and hands pool, usually, as well, then constrict after eating. My feet and hands will then go blue and get very cold. Very strange. I'm a mess. Linda