LindaJoy

I voted for GI issues. For me, the GI pain and reactions to eating are the worst thing I deal with. If I could get rid of the GI / eating stuff, I think I could deal with the rest pretty well. I'm even doing better with the adrenal rushes / anxiety episodes I have. Lindajoy

Hey, Futurehope. Congrats if you have a diagnosis. That's exciting to learn your body. May I ask, what testing did you undergo for this tentative diagnosis? I've undergone a lot of mast cell testing and have been told, time and again, that I don't have a mast cell problem. I'd like to make sure I've had all the appropriate testing, just to be sure. Thanks and take care. Lindajoy

Hey, Anna. I'm not sure DAO can be checked in the US. Do you know, can it be? I've read a great deal about it, and I think I would benefit from being able to have it tested. Maybe I don't have enough? I know, when I was pregnant, I could eat foods I was truly allergic to. It was great. DAO increases in pregnant women. Hey, Dizzy. Yes, I'm gluten free. Heck, I'm practically food free most days! It helps, I guess, but it's hard to tell. I also looked at the cytokine article by ProHealth you suggested. You know, the more I read about everything that can go wrong with my body, the more I'm afraid to get out of bed in the mornings. Cytokine storms? Geeze. What next? Scares me. Is there anything you do about it? Thanks, everyone. Lindajoy

I have them, as well, just on my right thumb nail. They can get pretty deep. I noticed that I got them when I first got sick. They worsen when my symptoms worsen, get lighter when I've had a spell of feeling better. I don't know if this is just coincidence or not, but I can't help but think that it's not. I think my lines are like a barometer for my state of health. I had a dermatologist tell me once that my lines were from my picking at my cuticles. I don't agree, sweet as she was, because I've picked my cuticles, all of them, since I was a toddler, and I have the lines on only one digit, my thumb. I think, if picking was the cause, at least one other finger, if not all of them, and my toes, would be covered. Lindajoy

I've been admitted around 85 times since I got sick in 2005, mostly due to severe weight loss, dehydration, and inability to eat without going into shock-like episodes. I have had a few hospitalizations for other things, like heart issues (finally had ablation in 2007), sphincter of oddi / pancreatitis / ERCP stuff, Addison's, and esophagus spasms / pain. But mostly, I've been put in to try and find a help to eat. Lindajoy

Hi, gofl1. I'm so sorry you're experiencing this, as I know how very miserable it is, and limiting! but I'm glad you posted this here. I started this last year, and I do the exact same thing! I used to be able to sit outside, in the heat, all day long, with no problem. Now, I can't be out for more than a few minutes during a hot day, or it drives me up a wall with all the itching and tingling I start to do, then the weird kind of sweating that comes--it feels funny when I do then start to sweat. And, yes, when I scratch, I'll get scratch marks right away. But, I, too, can take a hot shower and not experience this. I take three antihistamines every day and am on corticosteroids, and I still do this, so I don't know about histamine being the culprit or not, either. I started Singulair the winter prior to this starting, so I wondered if it, or even the Pepcid or Allegra, was the cause. I also wondered about my elemental formula, as it's filled with artificial sweetener, if that could be causing it. Last spring was the first time in my life I ever got sun poisoning, too. I got it on my lower legs. I didn't know what it was and was scared. My husband called my doctor's office and described it, and they explained what it was. I had to put ice on my legs several times a day to soothe and heal it. If you hear what this is, please keep us posted. I'd love to know why I'm doing this now, after 46 years of being a sun flower! Lindajoy

My skin looks really gross most of the time. My feet are blue, nearly black most times, my hands will turn blue or get really mottled, and my arms and legs look blotchy, like someone has drawn road maps all over me with red ink. I'm hoping for a tan this summer, but I doubt I'll be able to get one. The sun has started to bother me and send me into symptoms. The best thing I can do for my skin symptoms is to get up and move, I guess. Stay warm, too. Take care. Lindajoy

Thanks for your responses, Dizzy and Anna. Anna, I've thought about histamine intolerance. I wonder how you test for that? Can you test for that? Also, with regards to CFS and ME, I just don't get the exhaustion like those with these conditions get. Is it an every day type of thing? I have bouts of severe fatigue, but that usually comes when my eating is getting bad again and I'm not getting nutrition. Yeah, Anna, I thought that too, that most people have the herpes virus, so how does getting rid of the antibody help? Dizzy, I'll look up cytokines. I asked an ME doctor here in the states (can't remember his name--I emailed him.) about food reactions in CFS/ME people, and he said he doesn't see that in patients with this condition. I was confused because I'd heard from people with ME themselves that they have severe reactions to foods and have to learn what they can and cannot eat. Dizzy, have you ever eaten and instantly felt pain and pressure in your ears, right behind them and down a bit? I get that with some foods. Got it with half a radish the other day. So weird. Take care and thanks everyone. Linda

That's what I thought, too, Humbled Pie, that this sounds like textbook low sugar issues. I think sometimes doctors get so used to not being able to figure us POTSies out, that even if we present with something that can actually be pretty textbook, they think it HAS to be something odd / off the wall, because we can't possibly have something "normal," so they shake their heads and say, "I just don't know." I've had doctors say, "With you, it can be anything." Not saying your symptoms are indeed from low sugar, Emma, but it seems a pretty reasonable place to start. Linda

Oh, I forgot to tell you how I get to feeling when my sugar crashes. I get terrible anxiety in my chest, enough that I find myself holding it and feeling like I can't breathe. I get nauseous to the point I don't want to eat and have to force myself to. I feel no energy at all. I get shaky and severely angry. You ever watch Fried Green Tomatoes, I think that's it, with Julia Roberts who is a diabetic? When she's getting her hair done and her sugar crashes and she needs to eat, how she acts? Out of it, angry, etc.? That's me, to a bit of a lesser degree. Is this how you feel? Lindajoy

Hi, Emma. Is there any way you can get your hands on a glucose monitor, so you can check your blood sugars when these episodes are happening? I have one that my endo gave me, since I can run a very low sugar at times, and it's really helpful to me when I'm experiencing symptoms and can't figure them out. You know, I'm thinking, I used to wake in the night with episodes like yours (I still do, actually), when my Addison's was undiagnosed and I wasn't being treated yet. I would eat, thinking it was low sugar, and while I felt better, I still didn't feel quite right. I wonder if maybe you don't have a bit of an adrenal issue, as well. Here's something to help in the meantime. My doctor always told me, when I was having sugar problems acting up, to eat a balanced way, meaning a fat, protein and carb six times a day. And, he used to say, "Graze, not gorge, since you're eating so much and don't want to gain a bunch of weight." So, for three meals a day, eat a protein, fat and carb, like a hamburger with bun. There's your fat and protein in the hamburger, and your carb in the bun. Since carbs are your sugar, your quick energy, when you have sugar problems, this quick sugar can't be metabolized like in a healthy person, and your sugars tend to rise quite quickly, then, if you still have insulin (aren't diabetic), you'll get a huge surge of insulin to combat the high glucose level, and you'll bottom out, leaving you hypoglycemic and sympotomatic. Toast is a carb, so quickly turns to fast energy--sugar. Bananas are sugar. So, before going to bed, maybe try some peanut butter on your toast (fat, protein and carb). You can still have your banana, but just make sure you have enough peanut butter to balance all that sugar you're taking in. Milk is good, too. It has protein, fat and carbs. See if that doesn't help until you can find what is exactly going on. I'd ask your doctor if he or she can supply you with a glucose monitor. A lot of docs get them into their office as samples and can give them out then to patients. I've never had to pay for one since 1995. I do have to pay for the testing strips, though, but with a prescription through your doctor, your insurance should pay a good portion of the strips. Please keep us posted on what you find out and how you are. Lindajoy

Hi, Dizzyde, Yes, that's how I felt--like I would have to jump through crazy hoops and pay crazy costs to see him. Sometimes I think, "Yeah, but if he can help, maybe I should do all this." Then, I think, "But, you know yourself, Linda, and you do not fit the meek, do anything he says, go blindly into the treatment type of patient he seems to need everyone to be, so how far would you get anyway?" And, after spending how much money? As I said earlier, I'm going to have my pcp look the packet over, like she said she wanted to do, even before I got it and had my own concerns with it. Maybe she'll volunteer to run some of the tests and see what they show. Then again, my testing by the CFS doctor I went to last month showed I have two possibly chronic viruses that could be causing some of my issues, so who knows? Maybe I'd go through all of this with this doctor for nothing. Well, I guess that wouldn't exactly be the first time I'd go through a lot of stuff--testing, cost, failure in treatment, frustration, back to square one--with a doctor! Take care, all. Lindajoy

Hi, Naomi. I don't remember anyone named Lieze. I'd really like to talk with her if she's like me and still here at the site. I wonder what her problem turned out to be, if she found an answer, that is. Yes, I've posted this issue in detail many times over the years. Mostly the response has been mast cell stuff, which I took to heart and had investigated thoroughly by two top mast cell docs in the US, to no avail. I appreciate your continued suggestions. This is how people get leads to better their health, so I really thank you all so much for continuing to offer support, encouragement and suggestions! Lindajoy

I do this all the time. When I look in the mirror, my face is red. I do not sweat with this either. I don't know what causes mine, either, but that's not a new thing for me. I don't know what causes most of my symptoms! Just so you know you're not alone. Lindajoy

Hi, Steph. Welcome to the group. You could not have found a better place to come for support, answers and friendship. I've been here since 2005 and could not do without the people here. I'm sorry you have suffered so much, but I'm glad to hear that you have found a doctor who believes in you (that is sooooo important) and is wanting to do testing to finally get some answers. You hang in there, ask away (there is almost always someone here with an answer), and again, welcome. This group has been a life saver for me. I hope it can be of help to you, as well. Lindajoy

Hi, everyone. Thank you for your continued comments. I'm feeling better and better about walking away from this doctor. I think my biggest fear is that I am very, very sensitive, and I agree, Kim, I think I would be a nervous wreck with him as my doctor, which wouldn't help me at all! It's okay, Katie, you didn't know. Hey, like I said, I take all suggestions, and I appreciate yours so much. Please don't feel badly and don't hesitate to make more suggestions if you come across anything you think may help. I just didn't know what to think after I got the packet and felt like you all here are feeling: like I should run away from him as fast as possible. But, it's okay. No harm done and I appreciate you very much! Yes, Firewatcher and Anna, I've found that former patient's site and made a copy of all the tests he suggests for this, to take to my pcp and see what she thinks. When I saw her in her office last week, she offered to take a look at the packet when it came. I'm taking it to her tomorrow. She said she wanted to see what tests this guy was going to do and what he would then be looking for. I'm hoping she offers to do the testing instead. She's been really supportive and so kind so far, so.....Here's hoping for continued good care. If you all aren't too busy, , could you do me a favor? This doctor, and even his former patient, suggests a vision test called a VCS test. They say it can show biotoxin infection accurately in 90 some percent of cases. You order it online. If it's positive, then you know to pursue this subject as the possible cause of your illness. If it's negative, it doesn't mean you're out of the woods where biotoxin illness is concerned, but it's a good test to take, in their opinion. Could some of you look at the information for this VCS vision test and tell me what you think? Is it another money scam? Do you think that a vision test could actually show biotoxin illness? Thank you, everyone. I feel bad asking you to do this for me, but I really respect your opinions. Lindajoy

AGH! I did it! There's my information. All the years I've been here, and I never knew how you all got your information on your posts. That shows you how computer literate I am! But, here it is. If any of you have any ideas, please feel free to suggest them. Oh, should I have all that I've been tested for and found negative to in my signature? There seems to be a lot there already. Too much? Thanks, everyone, for caring so much. I care about all of you, too. Lindajoy

Hi, everyone. Thank you for your suggestion. I don't know what you mean, though. I see all of the information that comes at the bottom of many people's posts here, but I really don't know how to do that with mine. Is it something I do in my account? Lyn, good luck with your mast cell issues. I've been tested quite a few times for mast cell disorder and found to not have it. I'm still skeptical, though, but I've seen most of the top US docs for this, so I have to think I truly don't have it. CC101, I'll try to see how to do the information stuff on my posts and get that to you all. Thanks. Linda

Hi, Naomi. When I eat, I have a whole bunch of symptoms happen. Sometimes all of these, sometimes not as many, but I always react to eating with some kind of symptom. Anyway, after I eat, I can have: --stiff, painful muscles right away, esp. in my legs --tingling, esp. in feet and legs --red face and neck, sometimes upper back --sometimes itching --sweating --severe shaking (sometimes with feeling of cold, sometimes not) This is the symptom I hate the most. --bp fluctuations --tachy or brady --arrhythmia --sometimes diarrhea --urgency to urinate --dry heaves --feeling that something is majorly wrong (duh, right?) --sometimes headache --sometimes feet and hands turn blue --dry eyes --tinnitus Now, we're talking all of this hitting at once. I have these symptoms all the time, randomly, but when I eat, they hit all at once and pretty quickly. Thank you for asking. Nunntrio: What is CPN? I'm sorry if you've talked about it here before and I missed it. Is it some kind of virus? Thank you, everyone, for all your information. Linda

Thank you, Naomi, for that site. I'd never seen it before. I'm a bit concerned by it, as I match what he's talking about, and I know his suggestion is to put me on an antiviral for a year, which I've heard can be really nasty medications. I still can't believe, and haven't found any doctor to verify, that my reactions to eating are caused by these viruses, even if I do have them. No where have I found that CFS sufferers have the food reactions that I do, viruses or not. I just don't know. I tell you what, I get so tired of feeling like I'm chasing air. Well, back to diving into Perry Mason. It's nice to get lost in someone else's troubles, real or not, sometimes. Thank you, everyone. If you have any more information to share on this, please feel free. Linda

Thank you everyone for looking at this information and validating that I should feel uncomfortable with it. I actually found a website / blog of a former patient of this doctor's who walked away from this doctor due to a lot of the things I thought I would run into, just based on the patient packet I told you about. He verified, through personal experience, that the doctor and staff are very sensitive and get mad over a lot of things if you don't follow everything they say just so. For instance, this former patient had to cancel, well in advance, a follow up appoint. (was over the six month mark so had to go back in person). The trip was 2300 miles and this patient was really sick. The doctor was so mad, he made the patient write a formal letter of apology to him and his staff before he would see the former patient again. He said he found himself walking on eggshells, scared to death he would do something wrong and be thrown out of the doctor's practice because he didn't have anywhere else to go or anyone else to see. He also said he was a test subject (obvious from having to sign the HIPPA thing that says you will be used in research study with all your private stuff put out there), so his treatment was always based on the research of the hour. Even if one part of this person's health needed tweaking, it had to wait because the doctor only worked on what he was researching at the time. This patient got tired of that and felt his health was suffering due to the doctor's need for research. I found this doctor mentioned on other sites, as well. He's highly respected. I don't think he's mentioned on Quackwatch. I immediately went there and plugged in his name, and he didn't pop up anywhere. I think he is respected for all he does, but people, including fellow doctors, have a problem with his carved in cement theories and treatments and attitude. Again, thank you all for looking this over. I think I sometimes jump into things with unknown doctors a lot because I'm so desperate for an answer and help. I sometimes let desperation rule common sense, and I know that, so when I question things, I just don't trust my judgement. Linda

Hi, everyone. I'm feeling a bit better emotionally. Thank you all for your support and encouragement. Recently, I contacted an environmental biotoxin specialist, to see if maybe my health issues are being caused by an underlying toxin problem. I watched a couple of videos on YouTube by this doctor, and he seemed really down to earth, nice, compassionate, but knowledgeable. His office sent a packet for me to fill out and get back to them, in order to set up an appointment. All seemed to be going well and I was feeling a bit hopeful again, when the packet arrived. After looking at it, I thought, "There is no way..." You all know I've been seen by doctors all over the country, so I thought I was familiar with what was usually expected of me as a new patient. I'm a bit taken aback by what I would need to do to see this doctor. Is it me, am I being too picky, or does the following seem a bit much to all of you, too? The first thing in the packet is a letter to patients, telling you what is expected of you as a patient and what you can expect from him, as your doctor. Among a lot of the things said, here are some that stick with me as seeming a bit much: --I am asked to pay a fee of $250 up front to pay for 2 books by this doctor that he wants me to read before seeing him, to familiarize myself with the jargon he uses, and --to donate to a fund that he set up to help people who have no insurance to be able to see him (jjust the initial office visit alone is 975.00). --I am later asked to buy other books, as well as DVD powerpoint presentations, and to give to still yet another fund he has set up, but these are options he encourages, not requirements, like the first two things here. --I must get approval for all tests he will be running that first visit because he will not take time out of the visit to put in a call for insurance approval. There is also a list of tests I must have my pcp do before I see him, and those include some pretty heavy duty tests: MRI, MRS, pulminary stress test, echo stress, nasal culture (not covered by insurance), etc. I know other doctors have done these things, too, so... --I must be nice to him and his staff at all times. He knows, being sick, we can get a bit crabby, but if we ever come across that way to him or his staff, he will ask that we leave his practice. He makes a point of this several different places in his multi-paged intro letter. --I must arrive to my appointment on time, even if this means coming in the day before. If I am even minutes late, I will be cancelled and he does not guarantee a re-sheduling. He even admits to heavy traffic in his office area and an airport that cancels flights a good deal, but you are responsible to get there on time, no matter what. --When calling the office, I must tell the office person, up front, how many questions I have. Let's say I have four. I must tell the office staff person I have four questions, up front, and after that, I am not allowed to ask more. Should I have more, I must write them down and wait another day to call. No kidding. He has a small staff and they do not want to take up a lot of time on the phone. And, there is a charge for all of these calls. See next point. --Speaking of phone, after the initial 2 hour visit, all work with this doctor will be conducted over the phone, which isn't covered by insurance. All calls will be given a time value and will be charged according to that value: for instance, you'll be told "this call will be 10 minutes," and will be charged accordingly--there's a chart included that gives the prices per call--if you go over the ten minutes, you will be charged 10.00 per minute after that. If it's a family member calling on your behalf, that price goes up and per minute, it's 15.00. --You are expected to send him copies of all of your files from the entire time you have been sick, plus the five years before that time. In other words, if you've been sick for 2 years, you need to send medical records for 7. With me, 7 years, I must send for 12. And, he doesn't care if it's 10,000 pages, you must send all by US mail. Anything faxed will be pitched. --After the first visit, he will probably know, within 98.5% accuracy, what is wrong with you. He will start you on some treatment. If you don't do all of the treatment suggestions he gives, ever, he will consider that you really don't want to get well and decide whether he wants to continue working with you. --He keeps your credit card number on account to pay for lab tests as they come (you aren't told about this, you just know to expect bills to show on your credit card). --speaking of not knowing, you also sign a HIPPA paper stating that all of you personal information can and will be used by said doctor, seeing as he's a researcher, in his papers and in discussions with others, including your medical history, current test results and medical status, and even your name, age, address, telephone number, etc. --He treats you for six months. Should you need more care, you have to go see him again. --He wants a timeline of your illness and description. These two things are to be typed. In fact, all correspondence are to be typed. Blah, blah, blah. I just keep saying to myself, about myself, "Caution: Does not play well with others." I'm scared to see this doctor. I'm afraid of making a mistake that will get me booted from his practice, like being too ill one day to be Mary Sunshine and coming across, during one of my timed phone calls, as crabby. And, I don't think I can afford him. He seems quite costly, with all of the uncovered tests, the care by phone that is not covered (for six months of time), the books I must buy, funds I must give to. And, I'm a bit hesitant to give anyone my credit card with permission to charge me for things that he deems are necessary without asking me. Has anyone else had to do these things to see a doctor? I've never heard of having to give to a fund or buy books before seeing a doctor. Am I being too picky? I know I'm desperate to get well, but not too desperate that I get taken advantage of. Oh, and I've looked up this doctor to see what others have experienced with him, and found that he's come under medical review following an incident where he had a patient taking medication made for animals. His reasoning was that it was needed and wasn't FDA approved for humans yet. What do you all think? Thanks. Linda

Thanks, everyone. I'll try to answer all of your questions. Katie, thank you so much for finding that site for me. I visited it and still have a good many questions. They talk a bit technically there, or maybe I'm just so new to this stuff that it isn't making sense. But, thank you. I'll keep going there. Maybe it will begin to make sense and sink in. Nunntrio, my pneumonia that was positive was from a Mycoplasma pneumoniae IgG abs. Apparently, the IgM form of this was negative. The IgG was pretty high, at 407 with anything over 320 being positive. Nunntrio, do you know, can this Mycoplasma cause other health problems, too? I am really at a loss when it comes to viruses. I know absolutely nothing about them and I'm finding it hard to understand the information out there. My high brain fog right now isn't helping. I'm having trouble even following Perry Mason. Hi, Naomi. Thanks for the video. It's funny, I watched a bit of that one just last night on YouTube. I thought maybe someone might talk about HHV-6 on YouTube in terms I could understand, so I went there and found this. And, it's Dr. A Martin Lerner who did my testing who I haven't been able to get any information from on results. It was Chronic Fatigue that he was testing me for. Well, ME. Yeah, Stanford really believes in Chronic Fatigue as a true disease But, the waiting list to see someone there for it, according to Dr. Montoya, is two or three years! Wow! Thank you, everyone, for all you've sent to me. If any of you know, can the mycoplasma pneumonia infection cause me other health problems, I'd really like to know. Thanks. And, what all can I expect that I have this HHV-6 IgG thing, I'd really appreciate it. Thank you, everyone, again. You're so helpful, and I appreciate it so much. Linda

Naomi, I'm sorry to ask, and I apologize if you've already addressed this here, but how were you diagnosed with CFS? Did you have the three viruses checked--EBV, CMV and HHV-6--and one or more was found to be high? How are you doing on the anti-viral? Which one are you taking, if I may ask? And, who is your doctor? I'm sorry to ask so much, but I just found out that my HHV-6 antibody is high, and I was being tested for CFS, so I'm interested in your journey through this. I hope that's okay. I'm interested in your spect scan, too, but more scared of it than anything! Any test involving injection of stuff into my body terrifies me, and I avoid them whenever I can. Maybe that's to my detriment sometimes. Thanks and take care. Linda

Hi, Katie. Thank you for giving me that bit of good news about my ability to produce antibodies. I never thought about it that way. ME is Myalgic Encephalomyolitis. Here in the US we call it Chronic Fatigue Syndrome, but in the UK, it's ME, and it's more neurological than what people believe. I don't believe I have it, but I'm not sure since the doctor hasn't talked with me, yet. Again, thanks for posting. Linda