Lilaclady Posted February 10, 2014 Share Posted February 10, 2014 Prayers for you Jean. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted February 10, 2014 Share Posted February 10, 2014 Bumping the thread for more prayers for Jean! Quote Link to comment Share on other sites More sharing options...
Amira Posted February 10, 2014 Share Posted February 10, 2014 I hope the doctor can help you today, Jean. :grouphug: Quote Link to comment Share on other sites More sharing options...
DawnM Posted February 10, 2014 Share Posted February 10, 2014 Praying you can get some help today. Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted February 10, 2014 Share Posted February 10, 2014 Hoping the quiet means she's getting the care she needs. Continuing to pray Quote Link to comment Share on other sites More sharing options...
Catwoman Posted February 10, 2014 Share Posted February 10, 2014 Hoping the quiet means she's getting the care she needs. Continuing to pray Same here. I hope she has some positive news for us soon. Quote Link to comment Share on other sites More sharing options...
Unicorn. Posted February 10, 2014 Share Posted February 10, 2014 Lots of these :grouphug: :grouphug: :grouphug: and sending all the good thoughts and vibes I can muster! Hope you get some good news today. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 10, 2014 Author Share Posted February 10, 2014 Update: I really like my new doctor. He doesn't treat me like an idiot. ;) That said, he's not doing anything new for me right now. I see the specialist in one week and he wants me to go to that appointment first and then he wants me to do some labs and come see him. The problem I've run into is that I'm too ill for some treatments that the ENT would normally do. And now the primary says that I'm too ill for some of the blood pressure treatments. He may send me to an immunology/allergy doctor. But for now I keep on what I'm on and pray that it will start to get better. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted February 10, 2014 Share Posted February 10, 2014 Thanks for the update, Jean -- I'm glad to hear that you like your new doctor! I wish he could have helped you feel better immediately, but at least it sounds like he has a plan, which is encouraging. Quote Link to comment Share on other sites More sharing options...
Lara in Colo Posted February 10, 2014 Share Posted February 10, 2014 I'm so sorry Jean. You are my friend and I hurt for you (like you need more help hurting--) Please keep us informed and I pray you find an answer soon. Lara Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 10, 2014 Author Share Posted February 10, 2014 Thanks for the update, Jean -- I'm glad to hear that you like your new doctor! I wish he could have helped you feel better immediately, but at least it sounds like he has a plan, which is encouraging. The problem is all the inflammation. That makes it dangerous to take a lot of medications out there because they can temporarily make the inflammation worse. He agrees with me that the inflammation is probably what is causing my blood pressure to get so high. So right now he's hoping the antibiotics I"m on will end up helping the inflammation by taking care of the cause. But until then things can get a bit dicey. I really don't want to sound overly dramatic but there is a risk of stroke or heart attack (my bp last night was 182/100) or me needing to get a tracheotomy in order to breathe if things close off more. I really don't want to go there. . . Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted February 10, 2014 Share Posted February 10, 2014 The problem is all the inflammation. That makes it dangerous to take a lot of medications out there because they can temporarily make the inflammation worse. He agrees with me that the inflammation is probably what is causing my blood pressure to get so high. So right now he's hoping the antibiotics I"m on will end up helping the inflammation by taking care of the cause. But until then things can get a bit dicey. I really don't want to sound overly dramatic but there is a risk of stroke or heart attack (my bp last night was 182/100) or me needing to get a tracheotomy in order to breathe if things close off more. I really don't want to go there. . . Thanks for the update, Jean. I don't know how you have the energy to even get on here and type. Truly amazing. Keeping you and your family in my thoughts and prayers. And the kids told me to give you hugs and best wishes and to let you know they will be praying for you and wishing you get better very soon. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 10, 2014 Author Share Posted February 10, 2014 Thanks for the update, Jean. I don't know how you have the energy to even get on here and type. Truly amazing. Keeping you and your family in my thoughts and prayers. And the kids told me to give you hugs and best wishes and to let you know they will be praying for you and wishing you get better very soon. Ironically, I feel ok at the moment. My bp is low in the mornings. It's starting to rise now. My plan is to see if I can lower it with magnesium (which is one of the things they use in the ER). Sitting and typing isn't too strenuous. ;) Quote Link to comment Share on other sites More sharing options...
creekland Posted February 10, 2014 Share Posted February 10, 2014 The problem is all the inflammation. That makes it dangerous to take a lot of medications out there because they can temporarily make the inflammation worse. He agrees with me that the inflammation is probably what is causing my blood pressure to get so high. So right now he's hoping the antibiotics I"m on will end up helping the inflammation by taking care of the cause. But until then things can get a bit dicey. I really don't want to sound overly dramatic but there is a risk of stroke or heart attack (my bp last night was 182/100) or me needing to get a tracheotomy in order to breathe if things close off more. I really don't want to go there. . . Definitely understandable! More prayers and hugs from here - plus I'm glad you like your new Dr! In the meantime... :grouphug: Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted February 10, 2014 Share Posted February 10, 2014 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted February 10, 2014 Share Posted February 10, 2014 Tons of hugs and prayers. You have been on my mind all day. If I were your doctor, I'd admit you. :gnorsi: Good thing I'm not, eh? ;) :) ETA I don't know why I chose that little saluting guy--guess I mean I'd tell you to march straight into a hospital bed til they figured it out! But there, I'm just showing my concern. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted February 11, 2014 Share Posted February 11, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 11, 2014 Author Share Posted February 11, 2014 LOL I would not want to be admitted to a hospital unless I couldn't help it. I'm on antibiotics. There really isn't anything other to do than to wait and see if it does its job. Unless it is clear that it isn't doing it's job - which isn't clear. (I'll know in a week.) As for the inflammation, there isn't anything they can do for me in the hospital, if they can't do it for me at home. As for the high blood pressure, I do worry about that, but again, they can't give me meds in the hospital that they can't give me at home, at least in this case. Plus, in the hospital, I'm exposed to a lot of nasties that I'm not exposed to at home. I'm trying to make healthy choices to increase my odds for healing and longevity. Quote Link to comment Share on other sites More sharing options...
LMV Posted February 11, 2014 Share Posted February 11, 2014 Update: I really like my new doctor. He doesn't treat me like an idiot. ;) That said, he's not doing anything new for me right now. I see the specialist in one week and he wants me to go to that appointment first and then he wants me to do some labs and come see him. The problem I've run into is that I'm too ill for some treatments that the ENT would normally do. And now the primary says that I'm too ill for some of the blood pressure treatments. He may send me to an immunology/allergy doctor. But for now I keep on what I'm on and pray that it will start to get better. This doesn't completely make sense to me but I suspect there are a lot of details I am missing and I can understand why you wouldn't want to share these details on a public forum. I guess I'll just pray that this doctor really does have a handle on all of this somehow. The problem is all the inflammation. That makes it dangerous to take a lot of medications out there because they can temporarily make the inflammation worse. He agrees with me that the inflammation is probably what is causing my blood pressure to get so high. So right now he's hoping the antibiotics I"m on will end up helping the inflammation by taking care of the cause. But until then things can get a bit dicey. I really don't want to sound overly dramatic but there is a risk of stroke or heart attack (my bp last night was 182/100) or me needing to get a tracheotomy in order to breathe if things close off more. I really don't want to go there. . . 1.)While I can completely see why someone might be a bit leary to reach for an ACE or ARB in the context of what sounds like it might be angioedema there are many antihypertensives that wouldn't have this issue. 2.)I don't discharge patients from the ED with BPs in the range you state you are having at home. LOL I would not want to be admitted to a hospital unless I couldn't help it. I'm on antibiotics. There really isn't anything other to do than to wait and see if it does its job. Unless it is clear that it isn't doing it's job - which isn't clear. (I'll know in a week.) As for the inflammation, there isn't anything they can do for me in the hospital, if they can't do it for me at home. As for the high blood pressure, I do worry about that, but again, they can't give me meds in the hospital that they can't give me at home, at least in this case. Plus, in the hospital, I'm exposed to a lot of nasties that I'm not exposed to at home. I'm trying to make healthy choices to increase my odds for healing and longevity. 1.) Have you ever had any cultures (or biopsies) done? It sounds like you've been on various courses of antibiotics for three or more weeks. I would think that would lead most prudent physicians to conclude that either this is not a bacterial process or that oral antibiotics are not sufficient for some reason (usually either an absorption and bloodstream content below MIC or just outside of the spectrum---ie like with Pseudomonas spp. where there really aren't great oral options). 2.)Regarding inflammation treatment options not available at home: IV methylprednisone pulse therapy comes to mind. There are probably other things as well I'm not a rheumatologist. It also sounds like you really don't have a firm diagnosis on this point and might benefit from inpatient evaluation from that standpoint. In general, I'm actually not usually in favor of admitting for a non emergency workup that can be done as an outpatient but in your case it sounds like this has been going on for three or fours months and it sounds like symptoms have been escalating so it might be the best option here. 3.)There are IV options for blood pressure control that we can use in the hospital under close monitoring (usually an ICU level of care)during hypertensive urgencies and emergencies. I offer the above not as medical advice (because I don't believe physicians should offer medical advice outside of an established physician patient relationship) but to give you some additional information it sounds like you may not have. Ideally you will discuss this with your doctor, or perhaps proceed to your nearest emergency department. No matter what you decide to do I hope that you do get a firm diagnosis, and an appropriate treatment plan soon. Best wishes! Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 11, 2014 Author Share Posted February 11, 2014 LMV - They cultured for strep but I was told by the ENT that other cultures would not affect treatment options. (I have no way to determine if this is true or not.) I was put on prednisone - it shot my blood sugar up to 297. They are considering putting me back on prednisone but with metformin on the side to keep the blood sugars under control. They are on the fence about this option. I'm keeping my blood pressure stable tonight so far (it's only in the mild hypertension range at the moment) by manipulating my medication myself. (And yes, I know I shouldn't do this but it is working.) The ER is still an option if needed. Quote Link to comment Share on other sites More sharing options...
mom31257 Posted February 11, 2014 Share Posted February 11, 2014 :grouphug: Jean! Our whole family is praying for you. Quote Link to comment Share on other sites More sharing options...
Freckles Posted February 11, 2014 Share Posted February 11, 2014 Jean, I've been praying, and I will continue to do so. I hope you are feeling better soon, and they can figure out the underlying cause of your suffering. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted February 11, 2014 Share Posted February 11, 2014 The problem is all the inflammation. That makes it dangerous to take a lot of medications out there because they can temporarily make the inflammation worse. He agrees with me that the inflammation is probably what is causing my blood pressure to get so high. So right now he's hoping the antibiotics I"m on will end up helping the inflammation by taking care of the cause. But until then things can get a bit dicey. I really don't want to sound overly dramatic but there is a risk of stroke or heart attack (my bp last night was 182/100) or me needing to get a tracheotomy in order to breathe if things close off more. I really don't want to go there. . . What is causing the inflammatory response in your body? Has nobody put a finger on it yet? Sounds almost as if they are all treating the symptom but not the cause. Maybe I missed crucial info here. I am frustrated for you and I won't let you have a heart attack or stroke. So get that out of your mind quickly! Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 11, 2014 Author Share Posted February 11, 2014 What is causing the inflammatory response in your body? Has nobody put a finger on it yet? Sounds almost as if they are all treating the symptom but not the cause. Maybe I missed crucial info here. I am frustrated for you and I won't let you have a heart attack or stroke. So get that out of your mind quickly! They don't know what caused the inflammation. The doctor today was wondering if it could be an allergic reaction to something. He was going over all my meds with me to see if any were more recent (there aren't any). Or it could have been some kind of an inflammatory response triggered by the virus that started all of this off before it became an infection. Or it could simply be because the sinus infection has also caused a soft-tissue infection in my throat. Or? I think that's why he's hoping to first knock out the sinus infection so that we can take away one variable. (Or that's my current hypothesis.) I'm glad that you have my back! I guess the anti-inflammatory I'm on can cause a sort of rebound effect (like a rebound headache) if you are on it for a longer time like I"ve been, too. So, that is in his mind too. Quote Link to comment Share on other sites More sharing options...
creekland Posted February 11, 2014 Share Posted February 11, 2014 They don't know what caused the inflammation. The doctor today was wondering if it could be an allergic reaction to something. He was going over all my meds with me to see if any were more recent (there aren't any). Or it could have been some kind of an inflammatory response triggered by the virus that started all of this off before it became an infection. Or it could simply be because the sinus infection has also caused a soft-tissue infection in my throat. Or? I think that's why he's hoping to first knock out the sinus infection so that we can take away one variable. (Or that's my current hypothesis.) I'm glad that you have my back! I guess the anti-inflammatory I'm on can cause a sort of rebound effect (like a rebound headache) if you are on it for a longer time like I"ve been, too. So, that is in his mind too. Normally I love the challenge of puzzles both physical and mental. However, when it comes to medical puzzles of any sort... let me just say I REALLY hope they figure out how all the pieces go together soon. Yours has taken an awfully long time. :grouphug: Quote Link to comment Share on other sites More sharing options...
lmrich Posted February 11, 2014 Share Posted February 11, 2014 Praying for you. Quote Link to comment Share on other sites More sharing options...
Another Lynn Posted February 11, 2014 Share Posted February 11, 2014 Praying for your antibiotic to be successful quickly, for inflammation to go away, for blood pressure to stabilize and be healthy, for wisdom in continued diagnosis, for healing and peace. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted February 11, 2014 Share Posted February 11, 2014 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted February 11, 2014 Share Posted February 11, 2014 Still praying and thinking of you. I keep checking in to see how you are. I guess I am realizing how precious you are to me. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 11, 2014 Author Share Posted February 11, 2014 Normally I love the challenge of puzzles both physical and mental. However, when it comes to medical puzzles of any sort... let me just say I REALLY hope they figure out how all the pieces go together soon. Yours has taken an awfully long time. :grouphug: Thanks. Creek. As I told the new doctor yesterday, I'm complicated. I have some chronic problems that stretch back for more than 20 years. Then I have some acute problems that I've had for the last couple of months. The chronic ones didn't obligingly go away, so these problems are all happening at once and it can get confusing for doctors to know what belongs to what. I'd love for someone to cure all of them once and for all, but I don't believe that Dr. House practices in this area! Quote Link to comment Share on other sites More sharing options...
Hedgehog Posted February 11, 2014 Share Posted February 11, 2014 I'm sorry to hear you're so poorly, Jean. Saying a prayer for you right now. :grouphug: Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted February 11, 2014 Share Posted February 11, 2014 Praying for you, Jean! Wishing you a speedy recovery! :) Quote Link to comment Share on other sites More sharing options...
Peaceful Isle Posted February 11, 2014 Share Posted February 11, 2014 Hugs and prayers to you! Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 12, 2014 Author Share Posted February 12, 2014 Thank you for all the prayers. They have been much appreciated. I'm tired but my bp has been staying within mild to moderately high levels tonight, which is good. Quote Link to comment Share on other sites More sharing options...
Impish Posted February 12, 2014 Share Posted February 12, 2014 Holy geez. I don't check the board for a bit, and this is what happens?! Praying for you, Jean. :grouphug: Quote Link to comment Share on other sites More sharing options...
Mom in High Heels Posted February 12, 2014 Share Posted February 12, 2014 Oh Jean, I'm so sorry! If I could, I'd come give you a big hug. I'm hoping they'll figure something out soon and you'll get better. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted February 12, 2014 Share Posted February 12, 2014 They don't know what caused the inflammation. The doctor today was wondering if it could be an allergic reaction to something. He was going over all my meds with me to see if any were more recent (there aren't any). Or it could have been some kind of an inflammatory response triggered by the virus that started all of this off before it became an infection. Or it could simply be because the sinus infection has also caused a soft-tissue infection in my throat. Or? I think that's why he's hoping to first knock out the sinus infection so that we can take away one variable. (Or that's my current hypothesis.) I'm glad that you have my back! I guess the anti-inflammatory I'm on can cause a sort of rebound effect (like a rebound headache) if you are on it for a longer time like I"ve been, too. So, that is in his mind too. Praying that the inflammation subsides and the sinus infection. You must be plain exhausted since this has been going on for over a month now. Have you tried systemic enzymes? They are supposed to help with inflammation as well. But you may not want to add anything new just yet. Perhaps when this episode is over, look into some high quality systemic enzymes to take as maintenance. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 12, 2014 Author Share Posted February 12, 2014 Praying that the inflammation subsides and the sinus infection. You must be plain exhausted since this has been going on for over a month now. Have you tried systemic enzymes? They are supposed to help with inflammation as well. But you may not want to add anything new just yet. Perhaps when this episode is over, look into some high quality systemic enzymes to take as maintenance. I take systemic enzymes! That's what is so terribly frustrating to me. The inflammation is a major factor right now but I always have some trouble with it. I do all these things that are supposed to help. I've gone low carb, paleo auto immune, gf. . . for months at a time and nothing helps. (Well, I've remained low carb for blood sugar reasons but it doesn't seem to help the inflammation problem.) Quote Link to comment Share on other sites More sharing options...
LMV Posted February 12, 2014 Share Posted February 12, 2014 LMV - They cultured for strep but I was told by the ENT that other cultures would not affect treatment options. (I have no way to determine if this is true or not.) I was put on prednisone - it shot my blood sugar up to 297. They are considering putting me back on prednisone but with metformin on the side to keep the blood sugars under control. They are on the fence about this option. I'm keeping my blood pressure stable tonight so far (it's only in the mild hypertension range at the moment) by manipulating my medication myself. (And yes, I know I shouldn't do this but it is working.) The ER is still an option if needed. To an extent your ENT is correct that as far as pharyngitis the only thing we usually culture for is strep and we really treat that to prevent the potential rheumatic fever complications down the road than to actually resolve the pharyngitis. Strep pharyngitis is usually a self limited infection. However, if your ENT believes that you have some infection that requires what sounds like >1 month of antibiotics I think if it was me or one of our kids I would want some evidence of that and I would want to have sensitivities so I knew we were using the right antibiotic in the first place. I'm not quite sure how the leap was made from strep negative (so likely viral) pharyngitis to sinusitis. Was the sinusitis diagnosis made clinically or did they do a CT? How certain of the diagnosis is your ENT? Has your ENT considered sinus aspiration to get a good culture and since it sounds like this if this is a sinusitis it has crossed over into chronic sinusitis have they treated for atypicals including fungi (which are more common in diabetics)? Has your ENT ever done laryngoscopy because I wonder if perhaps some of your throat swelling/closing up is more of a vocal cord dysfunction variant than an allergic phenomena. If he/she did a scope before and everything looks good then I would guess that should move the allergy/immunology appointment up on the priority list. Have your ever seen a rheumatologist? Have you ever been seen by ID? I think you need to find an internist with a good fund of knowledge who is able and willing to be the captain of the ship and help you navigate through this to a firm diagnosis and appropriate treatment. Unfortunately I do think that good primary care physicians are a bit of a dying breed. However, if you can find one who is smart, conscientious, compassionate, and able to stay on top of things and coordinate care as if someone's life depended on it they are worth more than their weight in gold. Our daughters' pediatrician fits into this category and I hope she is not planning to retire anytime in the next twenty years. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 12, 2014 Author Share Posted February 12, 2014 To an extent your ENT is correct that as far as pharyngitis the only thing we usually culture for is strep and we really treat that to prevent the potential rheumatic fever complications down the road than to actually resolve the pharyngitis. Strep pharyngitis is usually a self limited infection. However, if your ENT believes that you have some infection that requires what sounds like >1 month of antibiotics I think if it was me or one of our kids I would want some evidence of that and I would want to have sensitivities so I knew we were using the right antibiotic in the first place. I'm not quite sure how the leap was made from strep negative (so likely viral) pharyngitis to sinusitis. Was the sinusitis diagnosis made clinically or did they do a CT? How certain of the diagnosis is your ENT? Has your ENT considered sinus aspiration to get a good culture and since it sounds like this if this is a sinusitis it has crossed over into chronic sinusitis have they treated for atypicals including fungi (which are more common in diabetics)? Has your ENT ever done laryngoscopy because I wonder if perhaps some of your throat swelling/closing up is more of a vocal cord dysfunction variant than an allergic phenomena. If he/she did a scope before and everything looks good then I would guess that should move the allergy/immunology appointment up on the priority list. Have your ever seen a rheumatologist? Have you ever been seen by ID? I think you need to find an internist with a good fund of knowledge who is able and willing to be the captain of the ship and help you navigate through this to a firm diagnosis and appropriate treatment. Unfortunately I do think that good primary care physicians are a bit of a dying breed. However, if you can find one who is smart, conscientious, compassionate, and able to stay on top of things and coordinate care as if someone's life depended on it they are worth more than their weight in gold. Our daughters' pediatrician fits into this category and I hope she is not planning to retire anytime in the next twenty years. Sinus problems were visually diagnosed by the ENT with a thing he stuck up my nose. He said that he could "see infection". He also says that he can visually see swelling in my throat and red streaks coming down from the sinuses. No largyngeoscopy but I did have an endoscopy by the G-I doctor and a floroscopy (sp?) which the ENT reviewed. (This is complicated because larygeal spasms came first, before the sinus stuff - unless the sinus stuff was hidden. The actual tongue and throat swelling didn't happen until I had a virus at the start of December.) I was thoroughly looked at by both a rheumatologist and a neurologist (for other issues) this past summer for my chronic pain issues. The laryngeal spasms were discussed at that time. I'm hoping that my new primary will be exactly the kind of doctor you describe. When he asked me what I wanted, that is what I described to him. Quote Link to comment Share on other sites More sharing options...
LMV Posted February 12, 2014 Share Posted February 12, 2014 Sinus problems were visually diagnosed by the ENT with a thing he stuck up my nose. He said that he could "see infection". He also says that he can visually see swelling in my throat and red streaks coming down from the sinuses. Was he using an otoscope (you've probably seen the same thing used to look at your kids, ears at the pediatrician just with a different attachement)? You can do that and see turbinates which can certainly be swollen and red and maybe with some discharge (aka boggy, hyperemic with rhinorrhea). This would be more of a rhinitis (which can be part of an URI or can be an allergic rhinitis etc). You can also see a pharyngitis picture on gross inspection with open up and say ehhh---which gives you much better exposure than ahhh ;). URIs and chronic allergies can certainly lead to sinusitis later but then you would expect to see more sinus symptoms in most cases (ie tenderness over the sinuses to percussion, poor transillumination, etc). I'm not saying it isn't sinusitis because it may be and I may be missing something in translation or your doctor may have seen a lot more that made him confident of the diagnosis (and he may have even documented this in the chart) but didn't go into all the little details because he thought he had shared enough that you got the diagnosis and understood the treatment. Ultimately that is the goal. I'm not sure when you saw the ENT last but if you aren't responding to his treatment then that is feedback he needs so I guess you can start there and then go from there. That may lead him to question the diagnosis or he may have reasons to be very confident of the diagnosis but then he needs to have a new plan of some sort. Good luck and I hope your new PCP works out for you as well. Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted February 12, 2014 Share Posted February 12, 2014 OY!!! :grouphug: :grouphug: :grouphug: You are in my heart and prayers! Quote Link to comment Share on other sites More sharing options...
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