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Just Wondering?? Autoimmune Disease And My Crazy Idea? Does It Make Any Sense???


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I was diagnosed with POTS in late August/ early Sept. of 2011. In April I fainted for the first time with this flare, and I was very fatigued. I also felt a lot of "anxiety". I was occasionally fainting (meaning once a week at most). I was having severe breathing issues- feeling short of breath all the time ( that has gotten "better" but still comes back with exertion. I think it was so bad then because I had really altered nothing about my life and was a busy mom with 6 kids, grad school and a full time job). But the shortness of breath was just "THERE" one day in mid- June. I attributed the anxiety to the fainting and shortness of breath, and constant tests and appts and no answers. Throughout the summer- the worse I got. By late July, I physically could not walk up stairs anymore. Fainting a little more common and LOTS of pre-syncope. Bloodwork was all "normal" except ferritin VERY low (3) and TSH low- .39 I think- but was told yes it's a little hyper but nothing to panic about. I was just curious about it though because it was 2.2 or something in Jan.. 7 months prior. At this point- sitting BP and HR were normal. Echo was normal. EKG- normal. I'd worn a 30 day Holter in April- normal. Was diagnosed with sudden adult asthma. Seemed odd. My respiratory test showed muscular problems breathing but no long or oxygen problems. Never EVER had allergies or asthma... Treated for it- nothing changed. Go to hematologist for iron infusions. He looked at my veins and for the life of me I can't remember WHY- but infusions were not possible, as I'm talking to him, as with all doctors at this time, I'm struggling to talk- so short of breath. Discouraged, I get up to leave and he says- wait! I don't feel right with you leaving. Something is wrong. Listens to my sitting HR... 90- a little high... He has me stand and he sees the color drain from my face, checks my heart- after 30 seconds- 160- has me walk out of the room and back- 210. Okay- obviously, issue. He asks about my heart tests. I tell him all 3 are normal. He checks them anyway- echo- fine. EKG- fine. Holter- he asks how was that? Fine I said. He asked how I knew and I couldn't recall. He tells me "Jen, I'm so sorry- but this test has never been opened, read or interpreted." Nice. This is now end of Aug. Did it in April! So he opens it and both of us can tell without being cardiologists- not right. Crazy tachy- all day every day. Several days over 200! Long story short, end up w/ TTT, DX of POTS but as Sept gets to Nov.. I deteriorate rapidly. Now sitting HR and BP are way abnormal. Fainting multiple times a day- with severe injuries. End up at Mayo in Dec... With a scroll a mile long of different DXs but mainly autoimmune autonomic neuropathy. Had IVIG and was in severe rejection within 2 weeks. Almost every body system affected ( all are now back to normal except bladder and I still have abnormal kidney function- wondering whether to worry or not- been two full months since last IVIG)

Now my question- according to Mayo there is no "name" really for my autoimmune disease- they know I tested positive for this serum protein which means I have one- and they know my form, for whatever reason is SUPER aggressive. No meds, no treatments, nothing has helped. In fact I'm worse now than ever. I believe that this autoimmune disease (which I know so little about and am trying to learn) is just attacking my body with a vengeance. My adrenal surges have been horrific- my legs are violently twitching all over the bed, as are my arms, yet I'm "paralyzed"- yet I feel these hormones surging through. Anxiety and pain are OUT of control. I have chronic herpes all over my face. Not just my mouth- in my nose, all around my mouth and nose.

What if I devote as much time as possible to learn how to control my stress, pain, surges, anxiety, panic? Will that help calm my Autoimune Disease down? Is it reacting to all of that and just getting worse? I'm thinking deep breathing, meditation, acupuncture, massage, anything and everything I can do for myself without introducing more drugs into my system? Am I way off base that this will affect my aggressive Autoimune disease at all? I know none of it would HURT me and would only help- but could it help put my Autoimune Disease in remission? Then, if so, I could start focusing on re- training my autonomic system eventually... I'm asking now because I go back to Mayo Wed. And I KNOW they have another immune therapy they want to try. Is my idea just insane as far as "cure' but great for coping? I guess as out of control as its been and with a bladder and kidneys that still haven't recovered- I'm torn. I know it's my choice ultimately, but my husband looked at me like I had gone CRAZY when I mentioned my plan and how I thought it might ease the stress on my Autoimune issues. He says: "No way- we should listen to Mayo."

I know I probably am a loon but I thought I'd toss it out there for an opinion. Nothing else has worked, in fact like I said I'm worse now than ever and down 55 pounds. I want to get better.

Thanks! And believe me- no offense taken if you say: "Yeah- you are a loon, crazy, batty, whatever".... It was just a thought I had and like I said, I'm still learning, or trying, to navigate in order to learn about Autoimune issues. It's all so complicated!!!!

Thanks!!!!!

Jen

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Hi jen,

I hate that you're going thru all if this .. Hugs .. I can only speak from my own experience but no amount

of stress relief would've made a difference if I was still eating gluten or other foods that I'm intolerant of.

I can't remember who I've told this to so I apologize if I'm repeating myself, but celiac disease is one manifestion of gluten intolerance so

there aren't any good tests for this. Celiac disease has been well documented as being a cause for

many (250 ?) autoimmune diseases tho. It's just that the tests for celiac disease and gluten intolerance are not up to par.

Your low iron and tsh are typical.

If you haven't yet, you may want to google dr terry wahls. She's cured her ms via diet. Her story is more

common than most people know tho. Sadly, imho, we're still living in a world where most doctors aren't trained

to heal. They're only trained in treating chronic illnesses with drugs ..

Imho, an integrative doctor may be able to help you. Tc .. D

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First thing that jumps out at me is, did they every give you the iron transfusion? Besides the low ferritin, what do all of your "anemia panel" numbers look like?

Second, can I ask what protein was elevated that suggested autoimmune?

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Jen, given the aggressiveness of your autoimmune illness would it be possible to suppress your immune system and live in a sanitary environment and see if that might reset it?

The ideas you have in my opinion wont significantly modulate the disease progress. However that is not to say that I think they can't be useful. They will be great coping mechanisms and ways to alleviate your pain but I have to side with your husband on this one that you need to stay with the mayo clinic doctors.

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You're symptoms are so much worse than mine so my opinion probably doesn't matter much. That said, I am being followed by a doc at Mayo but I am also going to see an acupuncturist next week. I figure it can hopefully help. In my opinion, you (generic you) have to give your body the right environment in order for your body to heal itself. No doctor or anybody else for that matter "makes" you heal. Figuring out what the "right" environment is for your body is the challenge.

I taught yoga for years before I got sick so do a lot of the deep breathing, meditation, etc. Have used massage, PT, herbs and other alternative treatments. While I think it's all been helpful, it hasn't been a cure yet. I tell the neuro everything I'm doing and so far he hasn't had a problem with it and has in fact supported it. I think all of these things may be helpful in helping you deal with your situation but like Jangle said, I don't think it's going to change your autoimmune disease.

Given how aggressive your disease course has been if it were me I think I'd keep up with Mayo and then do some of this other stuff to help me deal with it all.

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Jen,

I'm with others on this one. If it were me, I'd be doing both. You have nothing to lose by adding your techniques (deep breathing, meditation, etc) on top of what the docs suggest. I'm doing those same things right now (meditation; Bowen therapy; total relaxation). I've been getting alot out of Quantum Healing by Deepak Chopra as well - if you are a reader and you are alreading thinking along those lines, you may also get something out of it.

Take care...

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Yes, I was expecting this answer... :rolleyes: I am not planning on abandoning my plans but I am also not going to abandon the medical community as a whole. I WILL go to the Mayo appt and see what they advise. I admit to being very nervous about undergoing any further immune therapy treatment... I have just decided that I will be open minded but I won't be making any decisions that day. I will go home and do some research and utilize some resources I have found before I proceed. Much as I hate to admit, I knew that the answer wasn't going to be that simple. It just seems like the more stress, adrenal surges and pain that I get, the worse things get.

Sue, I have IgA deficiency and abnormalities in the the other antibodies as well and the serum protein they found is hypergammaglobunemia.

My main problem is that I feel ALMOST like Mayo is looking at me with tunnel vision. I am still having significant kidney dysfunction and bladder issues since the rejection of the IVIG. I don't understand why they just want to assume that the IVIG is still causing it and don't to worry about it-let's just wait until once the IVIG wears off.. I will be fine. All other levels have returned to normal, what not those? I found out from a friend of mine who is a pathologist and has been one in 12 years, that almost all people who test positive for that protein are usually given a bone marrow biopsy to rule out cancer because there are many blood cancers that can also be found with that protein and that she has NEVER heard of a doctor not doing a biopsy with a positive test. I have to say- I have a a gut feeling, an instinctual feeling, just a VERY strong feeling that I do not have cancer. I don't know HOW I know this, but I just do. I think that the dx I was given- auto immune autonomic neuropathy is correct. Symptoms all point to that.

THAT SAID, my friend Anna (the Pathologist) said there are many blood cancers that will not have symptoms that will not show up for 1-3 years and the only way that one would find out is a bone marrow biopsy along with that positive test of that protein. She is pretty adamant with me that I not overlook this and need to get the biopsy done- JUST to rule it out. I asked her as a pathologist if she has ever seen this protein, and she said yes- ALL 3 times- blood cancer. I know she is worried. Not sure if it is an overreaction due to a friendship or if this is reasonable. Although, she did tell me that she was shocked that it was not ordered because it was standard. There are other illnesses as well that can commonly occur with this protein. That is what I mean about the tunnel vision. Ignoring the kidney issues, or other possible causes, just because they are not related to autonomic neuropathy OR their research study. Which is based on how autoimmune diseases respond to IVIG- and a subset in hypergammaglobunemia. She is afraid they are too worried about their research study that they aren't looking at me as a patient as a whole. I should say that she is actually employed by Mayo.

I guess I am afraid of either UNDER-reacting (my original post) or OVER-reacting and requesting tests that are not necessary. I also really trust my friend and she has provided me research that shows that this is a possibility. I am just confused, I guess. But I really would feel better if the neuro dept. would have referred me for other consults if there was a chance of other issues. My kidneys, endocronology, hematology, (never had a full iron study- only know my ferritin now is 6 and hemoglobin is 9. That is all I know.

So what would you do? I know you would all go to Mayo.... but would you think these other I have testing? I strongly trust the opinion of those in our forum- you are all compassionate yet honest- and I am sure that I will get answers that are honestly answers tht you would consider if this was your situation. Thanks so much for your help! Now I have to go gag on some crow and tell Rob he was right... Ugh. I HATE doing that!!!!

Thank you all so much for reading, caring, and taking the time to give honest opinions.

Jen

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Jen,

I feel so for you and how your body is letting you down. No one, can really tell you what to do - it has to be your decision and YOU have to be comfortable with it because that decision will affect the rest of your life. Is it worth taking the gamble?

That being said, if a question has been raised in your mind - like the question about cancer. That question is going to stay there until it is either proven or discarded. For it to be discarded - you are going to have to be tested for it. I know me - if, there is an idea in my head - usually, I have to either disprove or prove it - just for me to be at ease with the question. Usually, one question will lead to another one and then another. But, that's how we learn and that's also how we put the pieces of our puzzle together for our lives and this illness to make sense. In the last few months, for you, things have gotten worse very fast. I don't think it's something that needs to be put off any longer. Make yourself a whole list of questions and ponderings of things that you want to be addressed. Don't be afraid to ask for what you want. If you sense something and it feels strong to you - the worst that could be said - is we won't do that test or not sure that's needed. But, they will probably do it - just to settle the question. Mayo, is quite the machine of a business and it is in business to make money. So, not thinking they wouldn't do something if your reasons make sense.

I know you don't have a whole lot of time to prepare yourself for this visit. But, do be open minded and take your computer - so you can do research. Research it and then decide if it's something you want to do. Go into it with KNOWLEDGE and the experience will be much less intimidating. You will also feel more comfortable about whatever decisions you need to make. Doctors have to give you all the options - that's their jobs and they can be held liable if they don't. Just because, it's offered doesn't mean you have to do it ---but, do consider it. But, knowledge will give you power. And power will give you strength.

Honey, you've been down and you need to find something - to bring you back up. I hope this visit will be the one to figure out what the issues are and then I hope they have a solution that will be the right one for you and you will get your life back again. You inspire me with your positive attitude and will to presevere. I know you've had a lot of emotional traumas and your husband and children have too. I hope you all will soon have some bright gift presented to you and it will brighten all your families day and give you hope.

Issie

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Jen, I think there is a point where science and mind come together. For example, say you cut your leg badly and are bleeding. No amount of thought is going to seal your wound. However, you can stay calm to reduce the overall blood that is lost until the wound is sealed--either by a clot or a stitch. I think that when we are ill, minimizing stress is imperative. To me it can make or break a day. However, paying a whole bunch of money for gimmicks that claim to help you might not be useful. But then again, the placebo effect exists for a reason. Because it is an observable phenomena. Honestly, I don't care if it is fake as long as it makes me feel better. So, I would say yes and no. Yes, reducing stress has a greater impact than we could ever possibly imagine. But also, reducing stress can only take us so far. In this, I remember taking anatomy and physiology in college. I remember thinking to myself--it is nothing short of miraculous that this thing (body) even exists, let alone functions. Moreover, our understanding as a species of our own bodies is useful but limited. Therefore, I think our bodies/minds are capable of much more than we realize. Further, if I am capable of recognizing that my immune system is functioning via awareness, then why can't I communicate back through the electrical impulses from my brain that allegedly are the controllers of my body. As far as overreacting, you only get one body here. And if there's anything I've learned from this disease it is that I know it best. I have insurance so that I CAN get things like mris and biopsies. Why wouldn't you get it done if it can't hurt you?

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I think the doctors need to be addressing your anemia. Anemia, especially severe enough to warrant iron infusions, can make your body go into sympathetic drive just to try and get oxygen to the brain and muscles. And, that is without even having POTS! I think it would be good to have that corrected, and then see how your symptoms are doing, and then go from there. I'm no doctor, so I don't know if there is a reason they are not addressing your anemia along side your autoimmune issue. I can only imagine your body would calm down with enough oxygen going around.

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Our body is just amazing. And I know doctors are doing SO much research into this... And I don't know if it is a coincidence because now I have one... But I've talked to so many people with autoimmune disease ( maybe its the pregnancy phenomenon- when you're pregnant or trying to get pregnant- you see pregnant women everywhere- although autoimmune disease isn't obvious- anyway) I wonder if the occurrence of them is increasing or if there are just better diagnostic tools. Or maybe they've always been quite common and not noticed because I didn't have one. I guess I question- is it in what we are eating,drinking? Genetic?

I saw a friend last week who has the same protein I have, hypergammaglobunemia. I don't know how they decide which autoimmune disease we have from there? Or if there is a way. Anyway, she also goes to Mayo and her disease is attacking her brain- but her cognitive part. She is already considered to have cognitive impairment and beginnings of dementia. She is 36 years old. Mayo told her unless research changes she won't know her family by the time she's 40. By heart shattered in pieces for her. I have not seen her in 6 months, and the changes were dramatic.

I'm going to do the bone marrow biopsy if I can find someone to order it (my Mayo neuro won't- when I asked he said his diagnosis is correct and this isn't a witch hunt- you've found your witch... Ugh. Wonder why he gets under my skin at times???? So arrogant. ) and I guess I will go to my family doctor and ask her about the kidneys, iron and biopsy.

It's all so complicated but I know IF I did have one of those cancers and found out 3 years from now I would never forgive myself for not checking now. My neuro DID tell me because my IVIG was so disastrous he wants me to take a week to think about what route to go. I know they are all immune therapies and they said they would have 5 options- 1-5 in order of their opinion of the best- 1 being the best. But these are all experimental treatments too. No data to go from really.

Thanks for your input, I appreciate it. I DO believe getting my autoimmune issue under control is the most important factor but you are all right and my brain is not going to do it alone. I happen to be such a Type A, high strung, controlling personality- I know the type of mind techniques won't happen overnight either. :)

Thanks again for bringing me back my La-La Land. I am going to be working on all those techniques but working with my dreaded neuro at Mayo. We have a love/hate thing going.

Jen

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I have an alpha 2 globulin that is just over the top range. I don't know if that means anything, but the normal range only has a narrow limit of a 0.5 range. Was your gamma globulin level very high over normal? I know they all have such narrow normal ranges.

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I don't recall exact numbers- but it was "significant" it the words of my neuro, whatever that means. Like I said, I understand near NOTHING about autoimmune diseases- other than they seem to affect everyone different.

Like my IVIG rejection, please someone tell me if igot this right, with my first treatment in Mayo (had one course but over 5 days) I had a reaction- they were normal reactions- I thought. They had me so compressioned up there I was a mummy- knee highs, then full leggings over those, compression undies (VERY attractive :) and a binder- so I couldn't really SEE my body. But got typical headache achy blah.. So side effects kept getting worse, each day, my face would red, but no fever (I told these nurses that I don't get fevers) I guess the redness was normal. When I was transferred back to my old hospital, for inpatient rehab, of course still getting he same symptoms. I had tried a new med that day because I woke up with NO warning my mouth, lips, nose and skin between covered in cold sores. Well that night getting ready for bed, the nurse my hives- ALL over. They were a horrible case. They immediately gave me Benadryl and some other anti allergy thing. But hives were attributed to new drug. Also that morning, before IVIG did a ferritin check to look at iron and had gone from like 8 3 weeks before to th 80's I think. That seemed odd and I asked them o send to Mayo. Never did and "No. Ths is good. Means your body is now absorbing vitamins."

Then I go home and the next have another dose in the in the infusion center. This nurse got me hoped up and ready to go... I asked if the IVIG started and she said.. I said.. "Ugh, I can tell. First drop goes in, I get a headache." bd she said that fast? One thing led to aother I ended up in anaphylaxis and rejection.

So-question- I know this is so basic. My Autoimune illness OR my immune system (not sure which) got very upset with all of these foreign plasmas running around in my blood. So instead of attack the "invaders" it starts to attack me? is that wh is going on? Because it showed compromise of every system: liver, kidney, thyroid, etc, and my blood too. So is that is what is going on or am I way off?

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Hi jen,

I hope I don't come accross as a pest. I'm just concerned about you.

I totally belive it's what we'e eating and drinking. And it's all these chemicals, bacteria, parasites, etc that we're being exposed to via the air or direct contact.

Did the mayo clinic tell your freind to give up gluten or take a look at her diet ? I had ataxia, brain damage, for 16 1/2 years that resolved 1 year after giving up gluten. That's just one of my symptoms that has gone away since changing my diet. I still have trouble thinking sometimes but it's soooo much better than it was. I googled celiac dysautonomia and got several hits.

More and more medical professionals are aware of the problems gluten can cause but I haven't heard that the mayo clinic or any other large medical facilities are recommending a gf diet yet.

Jsyk, I don't think gluten intolerance is the answer to all illnesses. Imho, An integrative doctor is qualified to analyze the possible causes of our health problems.

Fwiw, I would change doctors. I've yet to successfully navigate a healthy relationship with one I didn't like. I'm fairly certain an integrative doctor would take you as a patient. They're more educated than

regular mds.

Wish you the best ... D

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Thank you everyone for your responses!!!!! The fact that you take time out of your day to think about me and my condition and comment about it means the world to me!!!! I can't even express how much.

Naomi- I have always been prone to cold sores but these outbreaks have been AFTER the IVIG. And they have been horrible outbreaks. I have had multiple sores at once but NOTHING like this. Usually, I get some tingly warning a day or two before- but these are different. I will just wake up with FULL blisters. Everytime, there are at least 20-50 depending on the outbreak. My guess is that the IVIG irritated my immune system so much that the herpes virus woke up big time.

ANY vaccine I get has always given me a bad reaction. I had a doctor give me the chicken pox vaccine about 10 years ago because he was afraid I would "get" it again as an adult and it is so bad. Well, I was young(er) and stupid and let him... and I was so sick in my life and ended up with the worst case of chicken pox ever. It is odd but I seem to have no immunity to chicken pox. I have had it three times... (8 years old, 16 years old, and 23 years old- plus the case I got at 28 years old with the vaccine). Every time I get it, it is the same intensity- it is pretty aggressive with me. I just pray I don't get it again but all of these herpes outbreaks on my face make me worry. I always wonder if the reason why I keep getting the chicken pox is because I don't get fevers so the virus is never killed? It is all speculation though... who knows????? My body has ceased to make sense to me since..... well.... it never has.

Dizzy... Oh my goodness... you are NOT a pest!!! Please don't say that. I mentioned the gluten thing to my neuro to which he promptly rolled his eyes (just as he did every time I mentioned exploring my connective tissue disease and autonomic issues- which I brought up so many times he actually told me not to bring it up again.) Ugh. I have not improved so it's not like I will be losing ground. In fact, I am worse because of the IVIG rejection.

Dizzy, I have heard SOOO many good things about going Gluten free, I am going to start researching it. Celiac disease is an autonomic disease, isn't it? Maybe it will be the answer???? So far, no one else has given me one and I don't see how it could HURT me. The chemicals, bacteria, bacteria, preservatives, and who knows what else???? WHAT is it doing to us?

And I DID finally find a neuro at my local hospital to see me (none would prior due to "liability" or in my words "Lazibility" because they refused to learn anything about my condition so they just wouldn't see me because they didn't "understand" it. Nice excuse) But they just hired a new one and HE called ME and asked me to come meet with him (not sure how he got my info.... ) but we talked on the phone a little and he said that he had reviewed my record and he is VERY interested in testing me for my connective diseases because he was quite concerned to see that I have a daughter with connective tissue AND multiple syncope and blood pooling at 13- and that my grandmother AND her father both died of sudden anuerisms in their 50's and early 60's. He doesn't think that should be overlooked. So I see him in 2 weeks. But at least he wants to address it and doesn't tell me to SHUT UP. He said that he believes that my condition IS autoimmune but that doesn't mean we ignore the connective tissue disease all together. So wants to do extensive genetic testing. Another interesting fact- her and I both have chronically dilated pupils- ALL the time. That is neurological isn't it? Not related to connective tissue?

I want to thank all of you again. Of course to me this is so important but I am just another member of the forum so you all taking the time to read and respond is just amazing. You have really become a lifeline.

Jen

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I've gotten improvements with my neuropathy by going glutten free - actually, I recently started totally grain free. But, just cutting out glutten and sugar have been very beneficial to me.

Jen, I don't know if you've read anything about l-lysine in regard to herpes - cold sores. I wonder if that might help that.

I too won't take vaccines. I think that a polio vaccine may be what triggered my dysautonomia when I was around 8 years old. I know, mine has a lot of genetic components - so don't think it was all the vaccine - but, I think it made it come glaringly into focus. I'm also low in IGG and an IGG subset (can't remember which one). I have autoimmune connections too with a couple of different things. So, I think there are probably combination of issues with most all of us. But, trying to figure out what they are - is not so easy. And then trying to figure out what to do about it is even harder.

I'm glad you are going to get the connective tissue disorders addressed. I know in my case it definitely plays a part in my over-all picture.

Sounds like you got a plan now and a direction. Keep us posted.

Issie

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Thanks Issie!!!! I am glad to hear that your diet changes have helped. That is ONE of the things I haven't tried so it is definitely going to be the next thing. Only problem is I am so debilitated at this point my husband or the kids do all the cooking.... not sure if they will agree to it. Maybe I will just start with me :) One of my problems is I have NO appetite so I have to forcefeed myself as it is.

I think there are a lot of factors for most of us as well. My parents told me that I got my vaccines (my first set as a baby at 2 months) and I developed this terrible illness. They never diagnosed it.. I was hospitalized with a VERY high fever- like 106 or something- and was there for a bit... but to my parents recollection- and mine- that was the LAST fever I ever had. I would get sick with various infections and bad illnesses all through childhood and never would get a fever. I know I have said it before here, but when I had appendicitis no one would listen because I had no fever (Dec. 2010).. FINALLY, they decided to take it out- 80% to rupture- so very advanced case- and temp was 97.1. It is just weird. One of the doctors at Mayo said that the high fever and illness I had as a baby could have "destroyed" my body temperature ability. I have no idea. But as far as I can remember I have never had my temp be above 98. That SEEMS like it would be immune related????

While I agree that my agressive autonomic dysfunction is not "caused" by any connective tissue disorder I was always bothered that Mayo would not look into it. Even separately from that, you know? Two relatives dying of a sudden blood vessel bursting in their brain. And that grandma was a fainter. And she was also very hypermobile like my daughter and I. And then with my daughter, she was born with a hole in her heart, has horrible leg pooling, fainting, dilated pupils, headaches, syncope, poor balance, multiple dislocations already, tends to have "low" BP but has never been checked orthostatically and I have checked her heart rate and no tachy (yet) but I think it is at LEAST worth looking into!!!! Something is obviously connecting SOME of this together.

Yep, I take the l-lysine and have for years and usually keeps them pretty well under control. This time though- NOTHING helps. They are SOOOOOO aggressive. And painful!!!

Jen

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Well... I think I made some naughty comments and totally forgot not to make negative statements and use doctors or facilities by name.. So the moderator had to go to lots of trouble to edit my post (I really am sorry! My rambling gets me in trouble at times) and I Ted to forget easily: NO NAMES!!!!

So, Naomi, that's probably what happened. Sorry about that.

Jen

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I see. Maybe I need some clarification on the rules here then - all I commented on was the strange (possibly bad) timing of a flu shot. Why would this need editing? I don't want to break any rules, but would like to feel free to express an opinion. :unsure:

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