Gemma

Is there such a specialty as infection disease specialist? Does anyone know what tests they would have to run. Someone talked on this forum about certain tests that they run, but I can not find that post. Its something like IGg or Iga, i dont remember the names. Thanks.

Hi everyone. I was wondering is this clinic only located in Dallas. Is there any other doctors or clinics like that around pensylvania, ny area. And also, how much is a 2 week program? I saw someone posted $5000 is that the price?

Hi everyone. I read on the forum that some people saw immunology doctors to be tested for different viruses and stuff like that. Can someone give me an advise what doctor I need to see for that. I saw an allergy doctor but all he did was give me a skin test. I told him about my story, but he didnt request any special tests, even though his specialty is immulogy. So, am I confused with this, is it some other specialty. I saw some people posted that they were tested for something like imoglubiline or something like that. I dont even know what kind of tests they supposed to perform and what doctor to see. I had mononeclesis virus in december and since then was sick. Asked my primary to check if my virus is still active, but he just said it will show positive anyways because you already had it. Any advice please. Thanks a lot everyone.

Hey Freaked. So did you finish school or had to stop due to illness. I changed my career couple of years ago from finance to Physical Therapy. Was able to finish the first year of school, but due to getting sick had to take madical leave for a year. I still have two more years to go, but now due to all these symptoms do not know how to even acomplish it. Basicly i just took a 30K loan for this year which I will need to pay out and dont even know if I can go back to school and finish it and be able to work in this flield. This is so bad. All my plans are ruined. I hate this illness. So question about benzos. Sometimes i feel like they screwed me up even more. Is it possible for stuff like xanax to cause hypotension. I remember when i stopped for a month i didnt have lighheadness as much, so I am thinking maybe xanax is making it worse. Also, when I stoped them my sleep improved. I was able to sleep thru the night without waking up every 2-3 hours. I feel like my sleep is ver messed up. Ofcourse none of the psychiatrists will admitt that these drugs can screw up your nervous system evem more. I was thinking of switching to klonopin from xanax and then tapper off klonopin. I heard tha xanax withdrawals are the worst and can last fr up to a year, depending on how long you were on them. I feel like at this point just herbals like passionflower will not help me much because the fear that I developed over these month is really bad. But I was thinking if ssri help I would prefer to stay on that for a while then benzos. Honestly all these drugs scare me so much.

Hi everyone. I also developed severe anxiety due to this illness. I was just recently diagnosed with dysautonomia, but have been feeling really bad since December 2012 after an onset of mono virus. All this time I thought I was slowly dying of some unknown disease. Also all this time I was told that I have severe anxiety and need to treat it, but I knew somehow that it is not just anxiety. Still I started with Buspar med which is like benzo but not addictive as they say. I had severe dizzy spells for the whole month I was taking it. I think it made it worse. Than the doc gave me lexapro, which I took for 9 days and couldn't tolerate it. Had severe skin burning and that is actually when I chest pains and hot and cold flashes started. Then I was given xanax, which seemed to help a bit with panics. I never went over 1 mg and always stayed around .50-.75 per day. While taking it I felt like I was going thru constant inter withdrawals between doses since it is a short lived drug, so I decided to get off the drug. My doctor slowly tapered me off and while doing that I was taking Passion flower which seemed to help tremendously. I stopped for a month and actually started feeling better. I didn't feel anymore like it is hard to breath, also my chest pains were gone, of course this good feeling came after horrible withdrawal period of a whole month. During this withdrawal period I first time felt like I am actually really passing out and it felt more like dying, very bad experience. Then after a month I started having severe pains in my stomach area just under my left breast, it was so severe that I couldn't move. This brought back anxiety again and everyday I freaked out that it was pulmonary embolism, until after numerous visits to the hospital they finally agreed to do a chest ct scan and of cause no PE. After that incidence I started to really feel palpitations and tachardia and all other symptoms of POTS. Before that I was feeling more milder symptoms of POTS and anxiety and the symptoms of mono virus. So after this my cardio doc gave me Flurin which brought up my anxiety even more and I had to go back on xanax which I sill regret doing. Now I am not sure if all these psych drugs are making my condition worse or if they do help. I would want to get off xanax again, but so scared of withdrawal. My other cardio doc recommended Zoloft. He said that it was shown that it does help some people with dysautonomia to decrease their symptoms. So I might try that and if it helps then get off xanax. Xanax not a very good drug, it is very addictive. I am also so scared of going anywhere. When I drive somewhere I always look around if there hospitals in the area or at least some medical offices, just in case if I need to run into one of them for help. I did call the ambulance coupe of times for myself because of the feeling of passing out. I don't hang out with friends anymore. I go to walk my dog with my husband to the park that's located right by the hospital because I feel safer this way. I even told my husband that I wish we wold have a house right next to the hospital, then I would be more calm. I know all of this sounds crazy and I was never like this. I was very independent, outgoing and now I am afraid to go shopping by myself. This is ridiculous and I have no idea how to get rid of this either. Maybe try Passion flower. It's natural and maybe it will help calm you down if you want only natural stuff. My psych helped me a bit with therapy. At least now I can drive to places and go to stores with my husband and to the park. Before I was afraid to do even that.

Ohh, forgot to say. Yes many docs at the ER said that they think that it is costochondritis. I was admitted to ER like 7 times in past 4-6 month, and every time all the EKG and all the bloodwork sowed that my heart was fine, no suspicion of heart attack. I even did a Doppler ultrasound to check for DVTs and a ct scat to check for PE, just doing d-dimmer test for PE wasn't enough to convince me that I do not have a pulmonary embolism. So, after a 3rd or 4th visit they did a chest ct scan to convince me that I do not have a PE. Well the pains are still there and now they just say it is costochondritis. However, it doesn't really hurt when I press anywhere in my chest area, so I don't really think that could be it. I sill feel like it is a blood vessel spasms, but how do I test for it? They did a regular stress for me at cardio doc, which showed normal results. I don't know how else they can check. Maybe I should just stop and just except the pain and live with it. I did notice that for the time that I stopped xanax, the pains were gone and as soon as I went back on xanax the pains started again. So not sure if it was a coincidence or not, I was off it for only like a month and stopped feeling pains for like couple of weeks or some after the withdrawal period was over.

Hi Freaked, thanks for reply. So you say that monitor would show some signs of angina? I had a 24 & 48 hr one done, which were normal, only showed supraventricular and ventricular ectopy. But I was told its nothing to worry and it was very mild. Just recently I had an even monitor for 10 days, going to see doc tomorrow for those results. I hope they are good. For the whole time I had it on it only turned on by itself twice, all the rest of recordings I was recording my self. So I assume if it turned on only twice by itself hopefully nothing scary going on with my heart. This is so frustrating going to different doctors and all of them tell you different things. It's feels like they all learn different stuff in school or something . Like in my example, one doctor scared me that those pains in severe cases (didn't mean my case but of cause being scared of everything nowadays I immediately apply it to myself) can lead to heart attack. But then two other cardio docs said it is nonsense. I still can't find this one doctor who I can trust and see that he/she will be concerned with my case. In the meantime I am constantly concerned with my heart. Always feel like something is not right in that area, even though all the tests are shown good results. The cardio doc said that the next test she can do is something like catherization or something to check for arteries, but she says she wouldn't do it, because all my other results are really good and I am 31 and otherwise healthy, so it would be crazy to do such an invasive test. She didn't consider a heart ct scan or MRI either. I don't know if I should be pushing for more exams, or just stop and except that this come and go pains are just due to POTS or anxiety. I just get so scared when I go and read online stuff like having sudden death, heart failure, heart attack, etc from dysautonomia. This scares me so much. I am not still sure if I do have POTs, for now I was just told I have dysautonomia, and probably POTS.

I saw cardiologist today and he said that my chest pains are nothing to worry. I told him that this other cardio doc told me that the pains are due to blood vessels becoming ischemic and that in sever cases it could lead to heart attack. He said that it is a total nonsense and I would definitely not have a heart attack from those pains. I don't know who is right and who is wrong, but I definitely like the answer of the other doctor and choose to believe in not having a heart attack from those pains .

That is great! What autoimmune tests your son had done? I am going to redo the 24 hour urine test in couple of days. My blood aldosterone showed normal, so she thinks I did the urine test wrong. I saw another cardio doc today, the one that did a tilt tale test for me in march. He said that my test did show positive but not very positive, because I never really fainted and only felt like passing out when given the nitro pill to induce symptoms. He also said that he never heard that the combination of midodrine, coreg and amytriptoline can cure the dysautonomia as the other cardiologist said. He said that for me he would suggest a little dose of zoloft, becuase it was shown in studies that it does help people with dyautonomia to decrease the symptoms. Also continue midodrine and said I can increase to 5 mg in morning and then during day and evening 2.5 mg. Also, told me to exercise and ordered some special stockings for me. He said that it is very common for women of my age to develop these symptoms of low blood pressure and increased pulse. He also said that he can say that I do have POTs but not severe so its almost as I dont have it. I have couple of more appointments and will see what other doctors say. But i did see on this forum that some people did benefit from zoloft, so I might try it.

Today I spoke with endocronologist and she said that she is not concerned with my high cortisol level. She said I could have been stressed or something and that is why it showed high. I am still concerned because it was double of normal. But she said that when they did ACTH challange test at the hospital my coritsol levels were within limit and I shoudl not be converned with that. Than I asked her if I need brain MRI to check for pituitary gland because together with my cortisol, my ACTH showed high as well. She said she sees no reason for an MRI, especially that I just had it done in summer of 2012 due to my lighheadness. She was concerned with my 24 urine test, because it was messed up. My creatinine showed low in urine, but normal in blood. Sodium was normal in urine and blood, aldosterone showed low in urine but within range in blood. Se wants to repeat the urine test. Now I am freaking out that I might have some kind of kedney desease. The more tests I do, the more stuff I find out, the worse my anxiety I get. Sometimes I just feel like I want to stop all the meds and stop going to docs and just pray or something like maditate and try to resolve my problems this way. Any advise anyone on all this aldosterone and creatine stuff? Thanks a lot for your replies. This forum is a life saver. I am so glad I joined it.

I hope one day I can be off the meds and start trying again. We really want a baby, and this health condition is preventing me from accomplishing this goal.

I had a miscarriage 1.5 yrs ago. 1 month ago the doctor said I have dysautonomia (still don't know if I have pots or not). He said that my miscarriage was probably due to dyautonomia, because it causes hormonal dysbalance. I was perfectly healthy before the miscariage, after it i started experiencing some symptoms, but very mild, like presyncopy, but not serious. Then 6 month ago I got mononucleosis and since then I am still sick and still trying to figure out what is going on with me. All this time doctors have been telling me that it is anxiety and were giving me anxiety meds such as xanax and laxapro, which I got addicted to now. But even taking xanax doesn't help, so that made me think that there is something else wrong with me. The cardio doc said it is dyautonomia. Now I just had my blood results back and apparently my ACTH and cortisol are both high. Waiting for the endocrinologist to call me. I hope she will not say that it is normal, because i see that it is high. Last time i saw her she said you just stressed and need some antidepressant. Well, anyways, we really want to get pregnant, but I have no clue how to do it while feeling this sick and plus taking drugs. I am on 0.75 xanax per day and 2.5 midodrine 3x a day. I am 31 and feel like if I don't get pregnant now it will never happen. It took us yer and a half to get pregnant last time, and ended up in miscariage at 5 weeks.

Lemonsin2lemonade, how did you get your doctor do all those tests for you. When I ask about mri or any other test, they say you don't need it. I am so angry, because I still don't know whats going on with me, but they don't want to do more testing. I read online that if my coritsol level showed higher then normal they have to do MRI to check pituitary gland, but they have no intensions of doing that. This is ridiculous. Any advise on how to get the doctors to do those tests for me. Thanks.

I am right handed. My pain is usually on the right upper side of chest. Sometimes it starts when I do something and sometimes when just sitting on the couch. It is usually in the same place. I don't know if i need more tests done. My cardio thinks that i dont and i dont how to convince her that i probably need more testing. They all say, you a woman of 31 yrs old, nothing will happen to you. But that doesn't take away my pain. Before I found I have dysautonomia which is still in the process of confirming, i just thought it was anxiety and was fine with it, but now I am freaking out.

Hi everyone. I also have chest pains, but mine is almost always on the right upper part of my chest and in the same place. Sometimes its a shooting pain, and sometimes more dull pain that could last for hours. Shooting pains come quick and go away. I have been to ER like 5 times for chest pains, the results show its not related to heart. My cardio doc did 2 echos, many ekgs, stress test, 24 & 48 hr holter, also 10 days even monitor (dont know results yet). So far doctor says my heart is healthy and I should not worry. 3 cardio docs said i am fine. Although the disautonomia cardio doc said that pain could be related to spasms in the arteries and it is not serious, but needs to be treated because in some severe cases the ischemia could lead to heart attack. This statement concerns me a lot. However, all ather cardio docs said i have nothing to worry about. I asked if I can get the heart mri, but the doc said that my heart is healthy and I dont need it. Would you advice me to do anymore tests or whatever I already did is enough. Ohh and I had chest ct scan done to check for pulmonary embolism ans all arteries are clear. But this was checked more for lungs not heart, so not sure if it covered all of the adteries in that area. I am freaking out when I get that pain and feel if i am not next to hospital, i will.die of heart attack or something. I am 31, take midodrine 2.5 mg two time per day, xanax 0.25 three times a day. Tried beta blockers but has increased cougj so stopped after 3 days. I am so scared. I did notice that when I went off xanax for a month the pain stoped, not sure if it was coincidence or not, but when went back pains returned. I have to fly soon and so scared if I get pains in.the airplain. My doc said that if stress test showed negative i have no coronery desease. Do you think i need more tests then already done for me. I am concerned thay the pain is in the same place.

I wanted to ask. I often have chest pains as well. Mostly it is on the right upper chest area, sometimes radiating towards the middle of my chest. I have been to the emergency room so many times because of this pain. Sometimes the pain is shooting and sometimes it starts and lasts for many hours. I had probably 20 EKGs, 2 ECHOs, stress test, 24 & 48 hrs holter, also 10 days event monitor (still waiting for results but was told since its an even monitor if there waa something serious they would contact me right away because they are getting updates every 24 hours). So far all cardio docs said I have nothing to worry and that the pain is not heart related. I still worry everytime and screared of having a heart attack or something. Also, i saw that somebody posted on this forum that pots people can have the heart attack. Doctors told me that if my stress test showed normal my chance of some coronary deases is like 1%. I have to fly soon and I am freaking out if that pain starts in the airplane where there is no access to doctors. I aksed my cardio doc to do heart mri for me but she said there is no need, that she thinks my heart is healthy. Any advice on my situation. Do you think I need more tests for my chest pains. I am 31 yrs old, otherwise healthy. Take midodrine for low bp and xanax for anxiety. Was given beta blockers for palpitations but had to stop them after 3 days because of increased cough.

Now she is running more tests for me, like women hormons and more complicated thyroid ones. I would love to do the mri of my pituitary gland if possible, but dont know if insurance will approve. Also, some test to check adrenals, like mri or ctscan (although not happy wih it because of radiation). Ohh, and my dhea was very low, which they said is not good when cortisol.is high and dhea is low means adreanals are very stressed and I am in constant anxiety state. But anyways, you should definetly investigate further into your sons adrenal glands state.

I think you should definetly take your son to see another endocrinologist. I definetly know that high cortisol can interfere with sleep as doctor explained to me, but not sure about low levels. Did they do further testing for adrenal glands? Or just regular morning blood ttest. Also, how low was it? I had 2 moring blood tests. Then 24 urine test and also ACTH chalange test.

Hi, I recently had 3 blood tests done for my cortisol level. 1st was done at 11:30 am and showed normal, but then was told by endocrinologist that I need to do it again before 9 AM, which I did and It showed double the normal. Also had ACTH challenge test done at the hospital, where they took blood then gave me hormone thru IV and they drew blood 3 more times every half an hour. 2 out of 4 times it sowed higher then normal. I haven't spoke to endo doc yet, because she is at conference, but my primary and another holistic doctor that I saw that it is abnormally high and that I need to treat it. She says this is where all my problems come from. She is running more tests for me to check for women hormones, Lyme disease and stuff, but says that I need to treat my adrenals. So, my questions is for anyone who had similar situation, Do people with dysautonomia tend to have high cortisol levels. This holistic doctor, says that once we get my hormones under control I will be fine. However the cardio doc that I saw, that diagnosed me with dysautonomia, didn't even bother checking my hormones. He just ran this ANSAR test on me and said, ok you have dysautonomia and we will treat it and gave me coreg, midi drive and amitriptoline and said she you in 3 month for retest. I couldn't tolerate the drugs he gave me so had to stop, but he says I should continue because this is the treatment he used before and it will work and I will be cured. But the other doctor says to stop all of the drugs except midodrine for the hypotension and she will have a different treatment for me which will be more towards balancing my hormones back to normal. So now I am even more confused who to trust. The cardio doc kind of specializes in autonomia, but he uses same treatment for all patients and when I tell him I have horrible side effects, he tells me to continue, my body is just adjusting. When I started coreg my cough was out of control, I called him, but he said no its not reaction because you don't have asthma so you shouldn't react to coreg like that. I called my other cardio doc and he said to stop imidiatly, because it definitely sounds like reaction. I stopped 3 days ago and the cough is subsiding. Now I don't even know if what I have is dysautonomia or something else. My diagnosed was based on symptoms and on this ANSAR test. This other doctor agrees that it is what I have probably, but she thinks that most of my symptoms are due to my adrenal glands overproducing cortisol. Any advise on this? Maybe someone was in the similar situation. Thanks a lot. I am all new to this and even though feel symptoms for past 6 month, only found out about dysautonomia las 3 weeks ago.

This new holistic doctor that I saw gave me these to take at night, 5 capsule, I think each is like 100 mg or something. She says it will help decrease my cortisol level. Last time my blood test showed double of what is normal. Also, she said it will calm down my anxiety a bit and help me sleep better thruout the night. Hope it works. The one that I bought is really expensive like $80, I saw online they sell cheaper ones, buy they have some other ingridiences in them.

I did see endocrinologist. My primary send me to see her about my hormones. She is on vacation so I haven't spoke to her about my results yet. But my primary and this other doctor looked at results and said that it was elevated. I had one done at 11:30 am and that one was normal, then one at 8 am and that one was double of what normal should be. Also had an ACTH challenge done, where they took blood, then gave me some steroid and then drew blood again every half hour three times. It was elevated 2 times out of 4, so they said it is not good. This was done at the hospital and I felt very calm there (i do feel calm when I am around hospitals lately, not scared if something happens to me ). But I am still waiting for endocrinologist to call me at tell me what she thinks. But thanks a lot for the advice and information.

She gave me something to take at night, its called Phosphatidylserine. Need to take 5 capsules. Maybe you are familiar with this stuff. She said it will help lower cortisol and let me sleep better without waking up at night. Ohh, I am so frustrated with these doctors. If they dont know something they should just say we dont know. Instead all of them say their opinion which makes me even more confused.

She is an MD, but something to do with holistic medicine. So now I am not even sure if I can trust her as well. She also says we have to calm down your adrenals because they are in overdrive due to stress. My ansar showed that I have paradoxical parasympethetic and she says we have to calm down your adrenals. Now cardio doctor was saying that he can treat it and reverse it and I will be back to normal, but I have to stick to those meds, that I cant tolarate. This is ridiculous.

Thank you for a feedback momtogiuliana. She is not really homeopethic doctor. She just takes different test results and puts it all together and then tries to dig deep to find the cause why its happening. What I dont like what my cordio doc is doing is that he doesnt really say what exactly I have. I assume I have POTs but not sure. I just know I have some thing with my parasympathetic, and need to balance that back. What I am concerned with is that he claims he can cure me and he did cure other people with the same combo of drugs he gave me. None of the docs seem to make sence why only these 3 drugs. When I have reaction to them and ask him if I can try something else, he says no, it has to be these 3 drugs. So I started slow only with coreg and midodrine and told him I will add amitriptolyne in a week. He said its fine. However, afer 3 days i developed persistent cough and called him, and he again said your body is just adjusting. Unless I have asthma I am fine with coreg. Well I dont have astha but I do have like a nervous tic cough and also, I have asthmatic allergies. So I took another dose in the evening and felt even worse, called him and left a message, 2 days passed never received a call back. I called my other cordio doc and he said to stop the drug because it is defenetly a reaction to coreg. I really want to belive in the treatment of this autonomous doctor, but he seemed to show no interest, gives no explanation, didnt even bother checking my hormons, doesnt want to try any other drugs with me. So, I feel like giving uo on him. He just bases his treatment on these ansar test. I called the office and asked if I can have results of my ansar, but was told they only have one page and doctors notes, nothing else. Very unproffesional. I know there is someone on this forum that was treated by this doctor and says that his treatment worksa and I wish that it would work for me as well. But the meds that he gives me make much worse, not any better. About cortisol levels I just found out couple of days ago. So you saying you had the same? Does that mean that people with dysautonomia can have increased corisol level. What she told me, that you need to find the underlying cause of my dysautonomia, not just treat the symptoms. Se says that my elevated ACTH and cortisol is the problem and I need to treat that. Does this sound like nonesence. I am already so confused and lost. Do not know who to trust and how to be treated. I seemed to like her, she seemed very knoweledgable and knew a lot of dysautonomia, was able to describe to me my ansar test and explain what is going on with me. But said that she is not sure with his treatment plan, because that would just block the symptoms for now and we need to treat the reason and for now she think the reason is my adrenals. She is still running few more tests for me and then will decide what to do. For now I am just taking midodrine and xanax, nothing else.

Hi, i have some news. So I so this doctor who specializes in inbalance medicine. She explained to me my ansar test and said that its a good test. However, eventhough she kinda understands his approach to treatment with those 3 drugs, but she says it will just take away my symptoms (maybe). She belives there is a problem with my adrenal glands. My cortisol level showed too high, so i am basicly constantly stuck in overdrive, this is where my anxiety and other symptoms come from. She will run few more tests for me to confirm it, but says that she is pretty sure this is what I would need to treat, the underlying cause. I will post the outcome of it. She is located in pensylvania. My moms friend had diabetes which she treated. She is not in network with any insurences, but I thought i would give it a try. She is very familiar with this stuff, so we will see what her next steps will be. In meantime, unfortunatly I had to stop taking coreg. My cough just got out of control. I called doc who prescribed it and he still havent called me, so I called my other cardio doc and he said to stop it and just take midodrine for now, because it does look like I have some kind of reaction to it.