In Tears About The Way Dr Treated Me

[flop]

I agree with a lot of what has been said about ways to improve doctors appointments. I occasionally travel to see a national specialist and I know if I don't prepare for the appointment I will come away upset and frustrated. I usually take my Dad with me (my Dad thinks this is odd but I need a second pair of ears and memory to help me take in everything that is said and then go over it after the apt). A few days before the apt we will sit and talk about what issues I want to cover - if I have new symptoms to present or questions about previous issues / results. We then write up a list of bullet points in big letters and leave gaps so that during the apt I can scribble notes in the gaps. Right after the apt I sit in the waiting room or cafe and write out the answers I was given. This means that I can remember what was said, give acurate info to my other doctors when they ask about that apt and also read over them before the next visit which may be months later.

Some doctors get nervous when they see you writing but I just say "I'm sorry my memory is nowhere near as good as it used to be, I hope that when we find the right treatment I'll be able to think clearly again, but until then I need to write everything down so that I don't keep asking you the same questions". No doctor or nurse has ever said anything impolite to that explanation - I think it actually helps them realise that I am trying help myself but also trying to help them too! Don't be afraid to "echo back" what a doctor has told you to confirm that you have got it correct, something like "okay the beta-blocker is to slow down the tachycardia?"

Some doctors are good clinicians, some have good communication skills, some are good at both - those are the ones that you cherish.

Flop

[all4family]

Hi everyone,

Thank you all so very much for all the loving support and encouragement. I'm sorry I haven't responded sooner. I tried a couple of times to get on, but kept losing my internet, as I was on the road. Does anyone else have to lay down in the car if they are going very far?

Ernie, I can't even imagine having Doctors think your nuts for 30 years! I only went through it for 5, and I was really starting to believe them! I am so glad that you stand up for yourself. And I agree with you. I think that we are all human, and all deserve human compassion. Whether doctor or non, whether male or female, whether crazy nut, or misunderstood person with an illness. That's why I am so glad I came here. When something like this happened before I would take it out on myself. Call myself stupid, and get truly angry with myself that I couldn't just get over this "fear". Last night I got my dignity back. I realized if everyone here has this much understanding, and have all experienced similar things that maybe the problem didn't lie in me!

Macks Mom, Thank you thank you thank you for the sorrys. The research article you are talking about is the one posted on the mast cell topic you posted? You are the one that posted that one right? I have read some on it, but have to admitt I am still feeling a little confused. I have had so much information come at me since last Tuesday or wednesday I think when I got my diagnoses. I think I am mixing some things up. What is the difference between MCAD, and mastocytosis. I will have to go back and read some more, maybe more will sink in this time. Thank you for reminding me of his name. Dr PeaBrain! I had forgotten it with all the lecturing and all, and I know how they like to be addressed by their "official" names!

Casper, I am so sorry you gave up trying to get to the bottom of this. I am glad though that you are working with another doctor. Even if she is moving slow. I love what you said about the x-ray vision! I had a ENT dr look at me for imbalance once (before I had even heard the word dysautonomia)and he walked in and before even looking in my ear told me I need a good brain drug. That it is nothing to be ashamed of. He's on them. He said he had "felt it" when he walked in the room. That you can get a feel for someone just by walking in the room! Gosh I wish I had come to him earlier...he could have saved me a lot of time and money, he could have probably healed me just by walking out of the room! (I felt better anyways!) And thank you for telling me I'm not a lesser person. I am feeling so much better with all the encouragement I have gotten here.

Sara, yes you are right . It doesn't fit into the norm. (I never did anyways!) And yes I think I need to start taking my husband again. I was until a Dr yelled at us in the hallway about not needing everyone there. But he is more than willing to come with me. He was so angry with this Dr., and he is a muscular bald dude that can be a little frightening if he gets angry ( which he does). I am a little concerned someone will say he was threatening them. Because he says it like it is. He would have told that Dr that that was bull$%! He is not a violent person at all, he just says it like it is. But obviously I need some backup, or I will just give up again like I did before and sit at home and suffer in silence. I am so sorry what that Dr did to you. That is just horrible!!! What ever happened to the hypocratic oath "first do no harm" That must have been just awful for you? Is pain a symptom of pots? I have horrible pain. And my bones pop and crack everywhere even in my chest. Is this a normal part of pots? I just assumed it was. thank you for the welcome, and thank you for the support.

Susan, Thank you for your kindness. And can I say good for you for standing up for Sara! It takes a lot to do that. It would be nice if we weren't "trained" to be so polite and never interupt the Dr. It is not about the Dr. (at least it shouldn't be) The Dr doesn't have to feel the pain. The Dr doesn't have to stop living his life. He will still go out and do what he wants to no matter what your outcome is. So we all should be able to speak freely with our Drs. too bad it doesn't always happen that way. And yes I am still laughing at what EarthMother said. I read it to my husband, and he is still laughing about it!

Sophia 3, Thank you. And I really like your idea with the clipboard! Maybe I could get a clip board as big and thick as a bat!!!! Thank you for helping me have some humor! With all the great comidians on here we should go on the road! But we would really need to take an arrogant Dr with us for the motivation!!! Thank you I will be more kind to myself. I just hope I can regroup before I go back! With the support here though I am sure I will.

Flop, I am so glad you have your dad to go with you. It is a lot to try and do these things on your own, and it is so important to make good decisions. Do you have to travel far? I will have to start taking notes, or maybe just bring in a little recorder. That I am sure will shake them up. But so many times I walk in the office, and forget everything I wanted to ask, and walk out and forget everything I was told. I think what you said is so true. Some are good clinicians, some are good communicators, some are good at both, and those are the ones we tresure.

Dawn, I read yours, but it is not on this page, and I want to remember it right, so I will post in one seperatly.

Thank you all for being a community that cares so much. I can't even begin to tell you just how much this has meant to me. You all have made a very big difference in my life. Just being their and understanding. Sharing your stories and your humor. It has given me my dignity back and made me feel stronger. Strong enough to face another day of being sick, and another day of Drs. (but not for a couple weeks yet. Thankfully).

(((((((((((((((((((((((((((((((((((((((((Healing hugs and hugs of thanks to all of you)))))))))))))))))))))))))))))))))))))))))))))

Suzy

[all4family]

Sorry for you,

Before I was diagnosed, I was always treated like a psychiatric patient when I went to the ER.

Finally, my husband came with me. He does have a good understanding of human anatomy and physiology.

He got right in the doctor's face and told him that he would not tolerate him treating me like I was a head case.

He told him that something was physically wrong with me and it was their job to find out what it was.

After that, I was treated well.

Dawn

Hi Dawn, I am sorry for the way you were treated. But I am so happy that your husband stood up for you. I am glad you get treated well now. It really doesn't help when someone is already suffering to add condesending emotional pain to it. Good for your husband. I applaud him! Thank you for your support.

Suzy

[Ernie]

Hi Suzy,

It came to a point where I was deeply convinced that I was a nut!!!!

Doctors were telling me I was fainting standing on the bus or in the grocery line up because I was afraid of people and I believed it. Then they said that I was fainting because I wanted sex with them (the doctors) or because I wanted attention. At first I found it hard to believe but after years of being told the same things I believed it. They really screwed up my self perception and my self esteem. The first reason why I persisted to go for a diagnosis is because I was fainting all over the place every time I stood up so my family and friends told me that it was not in my mind but physical. I was accepted at NIH and the main reason I went there is to find out is I was a nut or not. I was relieved when Dr Goldstein told me that he had the medical proof that it was physical. I came back from NIH motivated to never let any doctor mistreat me again. So since that day I am very determined to have none of my doctors think or insinuate that I am a nut. Some have tried since 2003 but they have a surprise when they do. I think they wished they had never mentioned those words!

I wished doctors would just learn to say: I don't know.

[all4family]

Hi Suzy,

It came to a point where I was deeply convinced that I was a nut!!!!

Doctors were telling me I was fainting standing on the bus or in the grocery line up because I was afraid of people and I believed it. Then they said that I was fainting because I wanted sex with them (the doctors) or because I wanted attention. At first I found it hard to believe but after years of being told the same things I believed it. They really screwed up my self perception and my self esteem. The first reason why I persisted to go for a diagnosis is because I was fainting all over the place every time I stood up so my family and friends told me that it was not in my mind but physical. I was accepted at NIH and the main reason I went there is to find out is I was a nut or not. I was relieved when Dr Goldstein told me that he had the medical proof that it was physical. I came back from NIH motivated to never let any doctor mistreat me again. So since that day I am very determined to have none of my doctors think or insinuate that I am a nut. Some have tried since 2003 but they have a surprise when they do. I think they wished they had never mentioned those words!

I wished doctors would just learn to say: I don't know.

Oh my gosh Ernie. What a horible time you have had. So they were saying you were faking the fainting, or just getting yourself so worked up you were fainting? I was also accused of making up that I fainted, because at first only me and my husband was there. And was told that I just get myself so worked up that I faint! Or I loved this I had sonomitization, which I was not even told this, I read it in my paper. And I understand how you feel about the self perception and self esteem. It is hard to keep telling yourself that you are worth something, when someone else keeps telling you you are crazy. I took drugs that made me sicker trying to cure my "mental" illness. I went to counseling, and even bought a 500 dollar program to try and feel better. But I just felt sick, and 500 dollars poorer. What is NIH? Sorry I just don't know all these things yet. I am so glad to see that you have overcome so much. You had to overcome physical problems, as well as try and defend that you didn't somehow "want" these problems! I am glad of your determination, and it gives me so much courage.

I wish they would learn to say that too. It sure would make it easier to deal with being sick if you didn't have to feel responsible for it!!

Suzy

[Ernie]

Hi Suzy,

One of my doctor kept saying that I was fainting in front of him because I wanted to have sex with him. I thought that I really must be insane because the man does not attract me at all. He is way the opposite of what I like in a man. But he eventually convinced me.

Another doctor said that I was faking fainting but that I truly believe myself and was not lying about it. So I started to wonder when I need to pee do I really need to or am I just faking. When I am hungry am I really hungry or faking. When I feel I need to sleep, do I really need to sleep. So I totally lost confidence about my basic needs.

The number one Canadian syncope specialist told me and wrote it on his report to my PCP that I had somatization disorder or Munchaussen because he had never seen someone as sick so I can't be that physically sick. Munchaussen is when you poison or injure yourself to get medical attention. So I knew I was not poisoning myself but I thought my husband was. So I became very suspiscious of everything I ate. It took a year to get the real diagnosis at NIH.

NIH is the National Health Institute in Bethesda. So I went to see a syncope specialist at NIH who gave me the medical proof that I was not a nut but had extremelly high levels of adrenaline and almost no renin. Then during the same stay I found out that I had genetic POTS and NCS and that about 80% of my family and extended family also had the same disorder. So I had no way to be cured. Now I accept it but it was hard at first.

[all4family]

Hi Suzy,

One of my doctor kept saying that I was fainting in front of him because I wanted to have sex with him. I thought that I really must be insane because the man does not attract me at all. He is way the opposite of what I like in a man. But he eventually convinced me.

Another doctor said that I was faking fainting but that I truly believe myself and was not lying about it. So I started to wonder when I need to pee do I really need to or am I just faking. When I am hungry am I really hungry or faking. When I feel I need to sleep, do I really need to sleep. So I totally lost confidence about my basic needs.

The number one Canadian syncope specialist told me and wrote it on his report to my PCP that I had somatization disorder or Munchaussen because he had never seen someone as sick so I can't be that physically sick. Munchaussen is when you poison or injure yourself to get medical attention. So I knew I was not poisoning myself but I thought my husband was. So I became very suspiscious of everything I ate. It took a year to get the real diagnosis at NIH.

NIH is the National Health Institute in Bethesda. So I went to see a syncope specialist at NIH who gave me the medical proof that I was not a nut but had extremelly high levels of adrenaline and almost no renin. Then during the same stay I found out that I had genetic POTS and NCS and that about 80% of my family and extended family also had the same disorder. So I had no way to be cured. Now I accept it but it was hard at first.

Oh wow Ernie, I am really sorry for all you have been through. The one with the sex is just abusive. I know what you mean about the faking thing. I was told that I really believed I was sick, and that my own mind was giving me physical symptoms because of the way I was thinking. So I really became sort of angry with myself, and when I was feeling my worse I would talk to myself very negative. I would kind of get mad at my body. Although I really believed they were wrong, and it wasn't all in my head those nevative things stuck in my head, and when I wasn't feeling as strong would bring me down. When I showed my sister who is a nurse the colour urine I had (it was dark rusty brown) she said yeah....whenever I am anxious I can make myself pee rust! Then she told me that she had seen a lot of pee in life, but the only time she had seen pee that colour was in people on on dialysis dieing.

How awful that that made you suspect your husband. Did everything work out ok on that?

I am very glad you went to NIH, and got the proof you needed. It's awful to go through life thinking you don't even know if you are thinking right or not. Can you tell me what is genetic pots? Is that familial dysautonomia? I shared my family history of my dad that he had "low blood pressure, and fainted all the time." And the doctor seemed very interested and took notes, but didn't say anything. I don't know a lot about his history, and we don't even know about his relatives because he was possibly adopted by his father, but we really don't know. But his mother and I think my mom said his sister or aunt used to have the same problems as him. So I am wondering if it could be hereditary. I'd like to know so I can help my kids maybe to avoid something that might start it in them. I don't know what I'd do if they got sick like this. That would just devistate me.

Suzy

[delphicdragon]

Suzy-

As far as I know, joint pain and joint cracking/ popping isn't part of the POTS picture. As I said, I have Ehlers Danlos, which is a connective tissue disorder. It makes my joints very loose and they dislocate all the time with very little force. I am hypermobile and have been all my life. I've had POTS symptoms all my life as well (used to black out all the time as a kid when I stood up - thought it was normal) When the pain and fatigue started in high school, I knew I needed a diagnosis. It took years to get one as the doctors were chasing horses, not zebras.

As much as it stinks to have to go to see another doctor, it might be a good idea to see a geneticist or orthopedist or rheumatologist to try to figure out what is going on with your joints. You might have fibromyalgia or another connective tissue disorder.

The Beighton scale is a test that tells how flexible you are. http://www.hypermobility.org/beighton.php I'm a 9/9.

www.ednf.org is also a good place to look with more information on Ehlers Danlos.

Sara

[all4family]

Suzy-

As far as I know, joint pain and joint cracking/ popping isn't part of the POTS picture. As I said, I have Ehlers Danlos, which is a connective tissue disorder. It makes my joints very loose and they dislocate all the time with very little force. I am hypermobile and have been all my life. I've had POTS symptoms all my life as well (used to black out all the time as a kid when I stood up - thought it was normal) When the pain and fatigue started in high school, I knew I needed a diagnosis. It took years to get one as the doctors were chasing horses, not zebras.

As much as it stinks to have to go to see another doctor, it might be a good idea to see a geneticist or orthopedist or rheumatologist to try to figure out what is going on with your joints. You might have fibromyalgia or another connective tissue disorder.

The Beighton scale is a test that tells how flexible you are. http://www.hypermobility.org/beighton.php I'm a 9/9.

www.ednf.org is also a good place to look with more information on Ehlers Danlos.

Sara

Hi sara, thank you. I am definatly able to do some of those, but was not sure on the elbow one it looked like the arm was all the way backwards, mine doesn't go that far. I've had a poppy elbow my whole life, and have always been flexible without stretching. I could do the splits when I was younger, without stretching. But if I did it now I'd hurt my self because the joint inside my leg always catches and pops.

It's terrible to go through life not knowing you shouldn't pass out. I didn't pass out a lot, except once when we had a contest who could hold their breath longer. I lost! But I was always feeling faint or woozy now that I think back. We would go to our outdoor swapmeet, and everyone in my family would get mad at me because after 10 minutes of walking and the sun I felt like I was going to faint. I had to find a shady spot to sit, and missed out on the fun. We just decided because I'm a red head I don't tollerate the sun very well.

I'm glad you got a diagnoses, (finally caught that elusive zebra) and hope that means help or treatment for you. It just seems like these conditions can't be treated very well...I am going to go check out the endf website, and see if it might apply here. It's amazing I went from trying to "change my thinking so I would quit making myself sick" to finding all you on here who have gone through so much of the same as me....Thank you for the websites, and I will definatly be looking into it. I'd like it if my body would quit hurting so much.

Suzy

[Ernie]

Hi Suzy,

When my teacher who was a doctor told me I was fainting in class to have sex with him I wondered how a person would like to have sex with an unconscious woman or a woman who had just fainted. After being raped in 2007 while I was paralysed in bed the police investigator told me that certain men have pleasure having sex with powerless women because it gives them a sense of control and domination. So from that comment I guess that this doctor had a control issue.

I suspected my husband until I went to NIH. I also suspected people who came to my house and there was a lot of them. I hated to be on the alert all the time. I thought that I would eventually die from the poisoning. The funny thing is that this neurologist never tested me to see if and what poison I was supposedly using and having in my body. Looking back at it now I would ask him to test me to find the poison.

I am saying genetic POTS because I don't have another name to call the POTS we have in my family. There is about 80% of my family who have the disorder. 29 were tested and 25 were positive for POTS, NCS. I have at least 160 relatives alive on my father's side so it means that there is at least 80 of them who have the disorder. Many of them don't even want to be tested because they believe that if they don't know they don't have it. There are even two members who kept their compression hose to do the postural catecholamine test hoping to have a negative result. They tested positive anyway!

[gelann]

Hi,

I went and seen an allergist, due to hives that I have gotten since I first got sick. I had been reading a little about the mast cell activation, and on another post found one more thing that applies to me. I really haven't had time to learn all there is about pots, let alone the mast cell activation. But thought it was worth mentioning. When I went in to be seen first a resident came in and talked to me, and I struggled to explain my story, and all the different reactions to medications I've had. It is very hard for me to even talk to drs., because I have had so many bad experiences with them, and I get confused easy and dont comunicate well. So after struggling to explain everything I told her I had a story I had written out because I forget too much. So she went out and talked to the regular Dr, and when they came in he didn't even introduce himself. He didn't even get the door closed, and he was already giving me a lecture about how You can give someone too much information, and they are only human too, And it takes too much time. This lecture went on, and everytime I tried to say something I was ran over. (I guess he figured I didn't deserve any more of his time.) I had a rash (amazingly) probably because the resident had scratched my arm, and that will often start my itching and hives. I showed it to him, and on to a new lecture about how itching will cause that. That the more I scratch the more that will happen. He said something about the mast cell thing that I had mentioned to the resident. He said he would check me for it even though he didn't think I had it. At this point I was already fighting back tears, and just wanted to run from the office all the way home. I was barely hearing anything he had said, and was just hoping it would be over with. He then asked me to see the pictures I had brought. I showed him the bruising on my spine. The blisters that turn into scabs, and then last the rash I get before I scratch. I don't know why but that seemed to intrest him very much. He asked if I had had it biopsied by a dermatologist, and I said no. He ordered the blood work, and some 24 hour urines. I said goodbye to the resident, and went and did my blood and urine. All the time fighting back the tears. Maybe it wouldn't have been so bad for me, but I have been treated like a child so many times by drs. and it brought back horrible memories. My husband was very upset because he knows I am usually a very strong person, and don't let other people bother me. I couldn't stop the tears anymore from rolling down my face, and finally went to the bathroom, and cried my eyes out. I have more appointments in a couple of weeks, but just don't think I can do this anymore more. I just can't take feeling like a lesser person just so a dr can have his moment of fame. I am probably just going to cancel my tests, and my appointments. I guess I am just a lesser person, because I can't keep overcoming this. It is just too depressing. I also asked if sensitivities to medications can be part of pots, and he just said no and looked at me like I was and idiot. Anyways. This is my boo hoo-ing story. Thank you for just letting me let it out.

Suzy

[all4family]

Hi Ernie,

I am so sorry for all you have been through. It is hard enough to have a physical problem bringing you down, but to have to deal with all the other stuff on top of it is just so sad. So very sorry for your pain.

Thank you for the explanation for the Genetic pots. I am thinking that my dad had the same thing, but just did not know it. Wow that is a lot of people in one family to have this. I sure hope you get some answers, and help soon.

Suzy

[mjan]

HUGS.. HUGS.. and much understanding to you from me~!

Dang these docs. YES they cannot absorb the WHOLE story.. no matter what. But think of this.. can you imagine what that Resident learned from that MD??? What to DO.. and NOT do???

Oh.. did I tell you what MD means? MD = MEDICAL DEITY.. Yup. But one day they TOO will be patients.. hmmm.. think of that!!!

I too get caught off guard.. stutter..stammer or shut down when "talked down to"..but have had better experiences with MDs.

I always write down a FEW questions or points I want to cover.. simple..without much detail. I let THEM ask for details.

Yes it makes sense to have someone with you.. another MAN helps..sorry but its true. But I tend to just forget after awhile and miss important things sometimes.

Whatever MAST is and caused by (I did look it up...it has so many symptoms etc). BUT this is what I did after multiple MDs/Specialists. I found this most amazing specialized Nutritionist. He has a specilized evaluation tool NRT or ART ( nutritional response testing.. or Autonomic response testing) to see where you are TOXIC..DEFICIENT..and ALLERGIC to. I am way too sensitive to meds as well. Sometimes I end up in the ER as a result.

Then his program BUILDS up your system..he detoxes the many chemicals that are going awry..causing many symptoms ..esp Neuro ones..either from the foods and beverages we eat/drink.. from toxins we breathe in.. and coupled with our predisposed factors.. make DIS-ease.

All I know is that he can make me feel better..stop inflammation on brain cells.. systems and nerve bundles..improve my health. And the nutritional program and treatments do not interfere with medications.. in fact.. because they are whole foods in tablet form..he can help with side effects if meds are causing them. He's sooo good that my last 2 nueuros told me to see HIM when I had flare ups.. yup. He cannot diagnose or cure..but man can he make things better.

Best to you.. you have OUR SUPPORT ok hon??

Warmly Jan

[all4family]

Hi Jan,

Thanks so much for the hugs and understanding. I have to confess I had to look up the word deity. That is just wrong! And too many do see themselves as superior people. (at least from my experience.) I went from being a person who never goes to a Dr. to going all the time. So my experience mostly relates to how I was treated when I became sick, and they thought it was all in my head.

I probably did share too much, but the problem is I really don't know what to share. I don't know what one thing might make a difference in diagnoses. I went for so long thinking I would eventually die from this and never even know what it was. I don't know what it was that led the doctor that tested me for the antibodies that led to my diagnoses. So I try to get as much information accross as I can. I just figure they can take what they need and leave the rest. When the resident was asking me questions I just answered them. The one Dr I really needed to ask questions to stunned me by giving me a diagnoses. So when he asked me if I had any questions I couldn't think of even one!

I do the stuttering and stammering thing (unfortunatly) all the time. I have improved though after coming off of medications. It becomes much worse when I am nervous or upset which I was.

I am not getting the whole mast cell thing yet, but I am still soooo new to having this diagnoses that I don't get the whole pots thing yet either. But I was alreay going to an allergist, for my rashes, and I kept finding more things on it that applied to me that I decided to mention it. I have always known that somehow the medications either caused, or triggered this thing I had. At first I thought it was just one or two, but then I would just keep trying more and more, and got sicker and sicker. The first time I remember having very strange symptoms was a couple of weeks after a flu shot. I had never had one before. Then one thing led to another, and I was trying drugs, and getting sicker and sicker. When I came off the drugs I improved. Never to where I had been before, but I was at least partially functioning. Then I took a antibiotic which caused a problem which led to another med...etc. etc. etc.

I love the idea of doing things naturally because of this. I am so happy you found a Dr. that can help you that way. There are some natural Drs. in our area, but I don't really see any Drs. right now on a regular basis. I basically wrote them off. The only ones I see are for diagnosing purposes, and I really don't know where I am going after that. I do juicing, at least I was when I was feeling good enough to stand at the juicer, and wash the procuce, and then wash the juicer. But I do want to start it again as it did give me some much needed energy.

It sounds like you have a great Dr., and are getting a lot of benifit from it. That is so great. What area are you from?

Thanks so much for the support. I hope you keep getting the help you need. Take care.

healing hugs Suzy

[Ernie]

Hi Suzy,

Thanks for your nice answers.

I have hope because I am going to Mayo in a few days. I will meet with Dr Low. I feel he will help me further improve my condition.

You can protect your children from getting sicker if ever they have the disorder by avoid the triggers as much as they can and not overdo it. You can use your own triggers as a benchmark.

[mjan]

HI Suzy~! I cannot tell you how much we ALL suffer in this country due to CHEMICALS CHEMICALS CHEMICALS~!! They are in EVERYTHING or put INside good foods..like hormones in chicken etc..bigger is better. We BREATHE chemicals.. I am 60 and I did not grow up with so many foods with preservatives and chemicals..after all..they have learned we do not decompose once dead as fast due to all the preservatives in our foods.

I live in Milwaukee WI. I swore off docs last year for awhile.. just tired of the diagnosie ring aroung. But I have been lucky of late..getting really good neuros who were really trying to figure me out.. and my case IS COMPLEX~!

But when I found this specilized NUTRITIONIST that tests using NRT by reading the autonomic energy in the body.. after all our BODIES do talk to us!! IF you know how to read it. Many many docs have limited abilities or tools and depend on only what they know.. how they were trained.. no matter what thei title says. After all I saw 2 Rheumies in a few months.. and both had different opninions.. I had 2 neuros in the SAME OFFICE and they tend to specialize..so they have good training but its LIMITED...not an answer for EVERYONE..ok? Both had totally different DXs.

In spite of my guru of a nutritionist.. it does not solve EVERYTHING. AND I must do my part and not eat junk..sugar..or preservatives.

AS far at the FLU shot.. and vaccines..its what is IN IT that some of us react to. .. the preservatives..only to find out that people who get the shot..are not protected against all viruses. So.. I do not risk that. My grandson had to be detoxed from the vaccines he got as a baby.. cuz he could not talk. After a long detox he was able to speak again. I have been detoxed from mercury 2 times in just a few years. Its in so many things now.

Well.. thats MY point of view.. and I am living proof!!

Take care.. and please.. please.. stay in touch. I will have my testing done next Friday 2/6/09

Warmly Jan

[all4family]

HI Suzy~! I cannot tell you how much we ALL suffer in this country due to CHEMICALS CHEMICALS CHEMICALS~!! They are in EVERYTHING or put INside good foods..like hormones in chicken etc..bigger is better. We BREATHE chemicals.. I am 60 and I did not grow up with so many foods with preservatives and chemicals..after all..they have learned we do not decompose once dead as fast due to all the preservatives in our foods.

I live in Milwaukee WI. I swore off docs last year for awhile.. just tired of the diagnosie ring aroung. But I have been lucky of late..getting really good neuros who were really trying to figure me out.. and my case IS COMPLEX~!

But when I found this specilized NUTRITIONIST that tests using NRT by reading the autonomic energy in the body.. after all our BODIES do talk to us!! IF you know how to read it. Many many docs have limited abilities or tools and depend on only what they know.. how they were trained.. no matter what thei title says. After all I saw 2 Rheumies in a few months.. and both had different opninions.. I had 2 neuros in the SAME OFFICE and they tend to specialize..so they have good training but its LIMITED...not an answer for EVERYONE..ok? Both had totally different DXs.

In spite of my guru of a nutritionist.. it does not solve EVERYTHING. AND I must do my part and not eat junk..sugar..or preservatives.

AS far at the FLU shot.. and vaccines..its what is IN IT that some of us react to. .. the preservatives..only to find out that people who get the shot..are not protected against all viruses. So.. I do not risk that. My grandson had to be detoxed from the vaccines he got as a baby.. cuz he could not talk. After a long detox he was able to speak again. I have been detoxed from mercury 2 times in just a few years. Its in so many things now.

Well.. thats MY point of view.. and I am living proof!!

Take care.. and please.. please.. stay in touch. I will have my testing done next Friday 2/6/09

Warmly Jan

Hi Jan, yes...I agree there are so many chemicals in our world. I never even realized it untill I became sick. I never used to get bothered by chemicals, so just didn't think about them. It's funny, because I just got through reading the ingredient list on the back of a macaroni and cheese container that my husband was going to eat. I had a hard time finding words on it that even sounded like food! I have had to change a lot, just to get functioning again. First I had to get off all drugs. And when I did it I really wasn't sure it was going to help, because the doctors were telling me it wasn't the medication that was making me sick. As a matter of fact they didn't believe me that I was taking the medication (the one for anxiety) because they said if I was that I would be feeling better. So one dr even did a urine drug test without my consent, and guess what?!? I was taking my medication. Funny they usually use those to prove you are on drugs. Not to prove you won't comply with drugs. He was acting as if I had a court order to take them or something, and I didn't. Total invasion of my rights. And the worst part was I had done nothing bad. I was just trying to get medical care because of how sick I felt. But I am happy to say I did get off the medication, and it did make a world of difference. I am still not well like I was before, but I am hopefull it will eventually fade away. (I know I am getting the idea don't hold my breath right? Even the Dr that diagnosed me gave me that look.) I have to use special soap and shampoo. Nothing with fragrance, deffinatly no msg. I just suffered my second very severe rash due to eating a food with msg. And I had read the ingredients, but I guess I was just feeling foggy, because I didn't notice it. My daughter read it again. I guess it would have been nice to tell the allergist this. But that would have been too much info.

I am very glad you have found some good neuros. I know they say that neurology is so complex, because they just really don't understand all the workings of the brain. So if you got some good ones that are really trying that is just so great! What does the NRT test for specifically?

I'm glad your not eating that bad stuff. Its just good advice for anyone healthy or not. Have you ever tried juicing? There are a lot of health benifits from fresh juicing. I certainly notice a difference in how I feel when I keep up with juicing every day. I wish I could say it was a cure, but it can't hurt thats for sure.

Yes I agree with you on the vaccines. I got a flu shot for the first time because of all the hype about bird flu. I also got my kids one at their Dr the same year. Their Dr said the kids one she has has no mercury in them. But the one I had just got from my Dr did. I started becoming sick after that. And you know what the worst part is? Both me and my kids used to be real healthy people. Every year people had the flu, and I would never even get a cold. I didn't even know what the aching muscles of the flu felt like. EVERY SINGLE year since I got the vaccine I have gotten the flu. And so have my kids. Just wish I could go back and change so many decisions I made in my life. But all I can do is move forward. Now I need to find out how I can legally avoid getting any more vaccines for my kids, because I really don't want them to go through this, and even though I don't have proof that is what started it I am pretty sure of it.

Well I hope your test goes real well. And I hope you get the answers you need. Let me know how they go. You can send me a pm. I will keep in touch, thank you.

Suzy