Jean in Newcastle Posted February 24, 2014 Share Posted February 24, 2014 Basic story: I've been sick since the week before Christmas with a sinus infection that is not responding to antibiotics. I've gone through 4 different courses with 4 different antibiotics until my body started to react to everything. When I started to react to antibiotic #4 and then #5 in quick succession, the ENT pulled me off of all antibiotics. He said that my immune system was overloaded. He wants to put me on prednisone for 10 days to try and take down all the swelling in my throat and sinuses. We had to coordinate that though with my primary care doc. because the last time we tried prednisone (last month) my blood sugar went up to 297. My rant: So today I went to my new primary care doctor (my second visit to him). We went over my labs which were pretty good. This is no surprise to me - my labs have always been pretty good. That still doesn't mean that I feel good or am totally functional. Anyway - the good news is that my hemoglobin A1C has remained at 6.2 - still in pre-diabetic range but not in diabetic range yet. (I'm not happy with it remaining at 6.2 but it's sort of hard to work on that when you're sick all the time.) So - this is what got me mad. I was talking to him about taking a hypoglycemic along with the prednisone and he started to back down because "as long as your sugar doesn't go up to the 400's or 500's it's ok." What? It went up to 297 last time and I felt HORRIBLE. I told him that and his response was that "it couldn't have been due to high sugar. People with sugar at that level don't feel it." I didn't waste my time arguing with him esp. since he ended up prescribing Metformin temporarily for me anyway because that is what the ENT wants for me. I'm a bit fed up at the trend for doctors to go by numbers only and to ignore how individuals actually feel. Plus, I've done quite a bit of reading on the internet (and yes, I know that doesn't equal an actual medical degree!) and the consensus is that you can start to have organ damage at a blood sugar of 180. So no, I am not ok for my blood sugar to get up to even 297 let alone 400 or 500. The thing I really like about my ENT is that he really listens and responds. And he seems to be able to physically see swelling that I can feel but the other doctors don't seem to see. I don't know if they just think it is all fat? Or perhaps because he's used to looking down throats and up noses he knows what is swollen and what isn't? His diagnosis has been confirmed by a CT scan last week too. So. . . I'm off to the pharmacy to get the prednisone and metformin. I feel like crap because I also picked up dh's stomach flu yesterday. The achy part isn't so bad since I feel like I have the flu all the time but my tummy has not been a happy camper. Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted February 24, 2014 Share Posted February 24, 2014 Oh, honey, you've been thru the ringer. :grouphug: Thanks for the update and sorry it isn't improving at the moment! Will continue to pray. Quote Link to comment Share on other sites More sharing options...
Ravin Posted February 24, 2014 Share Posted February 24, 2014 can you perhaps go on a low-sugar, low-carb type diet for a while? Something like the Whole 30 with anti-inflammation variation? Diet changes can have a huge effect on the immune system as well as on blood sugar of course. Being sick for so long stinks, and having doctors not listen and treat numbers instead of patients is worse. Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted February 24, 2014 Share Posted February 24, 2014 Sorry everything is so crummy right now! I will pray for you to feel better soon! I know you really need some relief. :grouphug: I totally understand your frustration with the doc! It is far too common. It's as though they are completely detached from the actual person they are supposed to be helping. Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted February 24, 2014 Share Posted February 24, 2014 Hi Jean, I am so sorry you are still feeling so bad! As I am also very frustrated with my obgyn, who seems to be phoning in my care, actually, she is doing worse than that, but that's another conversation... I really think I understand your current frustration. :grouphug: Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 24, 2014 Share Posted February 24, 2014 Jean, have you ever gotten massage? Just a basic Swedish Eslan massage can be SO good for your immune system, and they can work the sinuses and the lymph all over you. You might consider getting one. Actually, honestly, if you have the money lying around you could stand to get two a week for a while. Eat soup and things to clean you out (beans, wild rice, fruit) and ditch all forms of white flour (which clogs you). The massage though might help quite a bit if you can swing it. It's not insta-fix. I got two a week when I had terrible health problems and immune system problems, and it was definitely part of my coming to the other side, that and diet changes. In your case you've had your dh's stress about work on top of it. Btw, is there anything environmental like dog fur or mold or anything going on?? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 24, 2014 Author Share Posted February 24, 2014 can you perhaps go on a low-sugar, low-carb type diet for a while? Something like the Whole 30 with anti-inflammation variation? Diet changes can have a huge effect on the immune system as well as on blood sugar of course. Being sick for so long stinks, and having doctors not listen and treat numbers instead of patients is worse. Ravin, I am on a low sugar, low carb diet. I was doing Paleo Auto Immune for about 3 months but the auto immune part made absolutely no difference so I put nightshades back into my diet. Most of my blood sugar problems are due to being sick, in my non- medical opinion (backed by lots of stuff I've read). Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 24, 2014 Share Posted February 24, 2014 Ravin, I am on a low sugar, low carb diet. I was doing Paleo Auto Immune for about 3 months but the auto immune part made absolutely no difference so I put nightshades back into my diet. Most of my blood sugar problems are due to being sick, in my non- medical opinion (backed by lots of stuff I've read). If you cut a lot of fruit out to go low carb, put the fruit back in. Fruit cleans out the gut, which rebuilds your whole body. Food combining is what I used to regain my health. Eases digestion without removing food groups. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 24, 2014 Author Share Posted February 24, 2014 If you cut a lot of fruit out to go low carb, put the fruit back in. Fruit cleans out the gut, which rebuilds your whole body. Food combining is what I used to regain my health. Eases digestion without removing food groups. Elizabeth, are there any good sites on food combining? What I'm doing right at the moment is to test my sugars 5x a day and eat to keep them within normal as much as possible. This has basically meant that I can have a slice of whole wheat toast at breakfast because my sugar stays stable but no grains at other times of the day because the smallest bit seems to put me over. Fruit doesn't seem to affect my sugars so much. But illness has made it harder and harder to keep things normal. I told the doctor that since being pulled off of the antibiotics that my blood sugars have risen but he was skeptical about that. :glare: Quote Link to comment Share on other sites More sharing options...
texasmama Posted February 24, 2014 Share Posted February 24, 2014 I am sorry to hear that your doctor argued with you like that. I have been in a similar position with suboptimal (low normal) bloodwork but horrible symptoms. (I do realize that your blood sugar numbers are far above what is the norm so that part is not what I am comparing to.) I had a wonderful doctor who treated my symptoms and not the numbers, and it made a huge, life-changing difference for me. You need a doctor like that. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted February 24, 2014 Share Posted February 24, 2014 :grouphug: I hope this works quickly (and that you can find a primary dr. who listens to his/her patients). :grouphug: Can they culture for strain/resistance, or has that already been done too? Quote Link to comment Share on other sites More sharing options...
Catwoman Posted February 24, 2014 Share Posted February 24, 2014 :grouphug: :grouphug: :grouphug: I'm no expert, but his blasé response to the blood sugar issue would concern me. I mean, seriously, 400's or 500's??? :svengo: That sounds just plain wrong to me! Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 24, 2014 Author Share Posted February 24, 2014 :grouphug: I hope this works quickly (and that you can find a primary dr. who listens to his/her patients). :grouphug: Can they culture for strain/resistance, or has that already been done too? I asked the ENT and he told me that cultures would most likely not give any helpful information. He said that since I've been on antibiotics so long that would affect and negate any results. At this point he's trying to reduce swelling so that there can be proper drainage for healing. Quote Link to comment Share on other sites More sharing options...
Jerico Posted February 24, 2014 Share Posted February 24, 2014 I, too, wish doctors would look less at the numbers and more at the symptoms. Hugs. Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted February 24, 2014 Share Posted February 24, 2014 So, so sorry Jean. I ended up in an extremely life threatening situation on three different occassions (once as a child and twice as an adult) because of doctors who did not listen to what I was saying, only to the numbers on the chart. I completely sympathize and worry for you. Ugh! I wish there was someone that could genuinely figure out what is happening and FIX IT. This just keeps going on and on...huge hugs. I wish with all my heart I had some concrete suggestions... Quote Link to comment Share on other sites More sharing options...
kewb Posted February 24, 2014 Share Posted February 24, 2014 I totally get where you are coming from on arguing with doctors. I feel like all I do is try to get docs to listen to me about my dh's health. I hope you are feeling better soon. Quote Link to comment Share on other sites More sharing options...
nevergiveup Posted February 24, 2014 Share Posted February 24, 2014 I have heard that rebounding (mini trampoline) is good for draining the lymph system. Might be worth a try. Quote Link to comment Share on other sites More sharing options...
joannqn Posted February 24, 2014 Share Posted February 24, 2014 Jean, has anyone considered the possibility that your sinus infection isn't bacterial but rather fungal? Link Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 24, 2014 Share Posted February 24, 2014 Elizabeth, are there any good sites on food combining? What I'm doing right at the moment is to test my sugars 5x a day and eat to keep them within normal as much as possible. This has basically meant that I can have a slice of whole wheat toast at breakfast because my sugar stays stable but no grains at other times of the day because the smallest bit seems to put me over. Fruit doesn't seem to affect my sugars so much. But illness has made it harder and harder to keep things normal. I told the doctor that since being pulled off of the antibiotics that my blood sugars have risen but he was skeptical about that. :glare: http://en.wikipedia.org/wiki/Food_combining Here's a link just to get you started. The image at the link (click it to make it bigger) shows how we divide the food. Then you have basic rules to work within: fruit separate from other stuff protein with low starch (meat and a salad, wild rice from Trader Joes, beans to make chili) low starch is ok with high starch (so for instance 1/2 a salad and a baked potato and some baby carrots) sweet fruit (bananas, dried fruit) separate from regular fruit That's the jist. I used a nutritionist for this, and I know she uses the same techniques with her blood sugar clients. My dh has some propensity to blood sugar in his family, so I try very hard to make sure he gets the salad and meat daily for dinner. Some fruit, in reasonable portions, actually gives you the nutrients to improve blood sugar control (what the nutritionist claims) and it helps clean out your gut. If your blood sugar is tolerating fruit, I'd DEFINITELY up the fruit and axe stuff like bread. There's just no nutritional need for bread at all, and fruit will actually heal you. You can eat fruit salad for breakfast, sweet fruit for a midmorning snack, fruit for your afternoon snack, and fruit for your bedtime snack. As long as your blood sugar is cool with it, I'd definitely take up that fruit, just regular old fruit. An apple, orange, and some blueberries each morning for breakfast would work. Sometimes we make a smoothie with yogurt, strawberries, and bananas. (apparently that's cool per food combining? dunno) She's got me making yogurt smoothies before bed now even. Yogurt of course gives you good bugs and I think does something magical with your acidity. I know yogurt plus fruit is a pretty common rec for blood sugar, because my aunt was told to eat that by the nutritionist when she was pregnant. Adding: no cheese. No cheese, no flour. Quote Link to comment Share on other sites More sharing options...
mamaraby Posted February 24, 2014 Share Posted February 24, 2014 :grouphug: :grouphug: :grouphug: I'm no expert, but his blasé response to the blood sugar issue would concern me. I mean, seriously, 400's or 500's??? :svengo: That sounds just plain wrong to me! There is some science/wisdom to back that up, especially if she were working on controlling things. Is the metformin unwise? Depends, but it's not as if the doc is coming out of left field. I can also see why the ENT would suggest something like Metformin. I suspect he's thinking that it might help boost her own immune response or at the very least get one variable out of the way. That doesn't change the fact that Jean both felt like she wasn't being heard/supported and then kind of put in the middle of the two doctors. Even if her doc was technically correct, it still would have been preferrable to have listened to Jean and honored her own lived experience rather than dismissing her concerns. I can imagine that was even more stressful, Jean on top of everything else you've been through! The idea that low carb fixes diabetes or pre-diabetes is not exaclty clear cut. It largely depends on whether or not the person in question is overweight. At that point the benefit probably occurs because of the weight loss rather than the low carb part. There are probably more diets out there than you can count that have adherents who "fixed" their health issues and improved their bloodwork. The common denominator in all of them seems to be either their very poor dietary habits or the fact that they ate more calories than their body could use and this were overweight. Heck, Dr. Kempner had big successes over at Duke University with his rice diet that included fruit, rice, sugar, etc. It wasn't even remotely a lc diet. I'm not saying any of this is true in Jean's case, mind you. Whole30 is really restrictive. I'm wondering if a combination of a more sensible, moderate diet in combination with the metformin and monitoring your own blood sugars might be a better option in your case, Jean. You're already miserable and under enough stress just from being sick, maybe keeping that somewhat easier/less stressful in the short term might help you heal in the long term? I hope they can figureout something to help you feel better sooner, rather than later! Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 24, 2014 Author Share Posted February 24, 2014 Jean, has anyone considered the possibility that your sinus infection isn't bacterial but rather fungal? Link The ENT has considered it. He looked for a fungal ball on the CT scan but there wasn't any. But he said that isn't conclusive. He said that there are combination antibiotic/anti-fungals out there but they are very tough on your system and he doesn't want to prescribe one unless we're pretty sure we need one. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 24, 2014 Author Share Posted February 24, 2014 Mamaraby, I am trying to minimize stress on my body. This includes trying not to do any extremes in diet. But I also know that high blood sugars can cause stress. So balance. . . is my goal. The ENT said that from the amount of scar tissue shown on my CT scan, that I've most likely had this sinus infection for much longer than 2 months but at a more subacute level. It may indeed be the root of many of my chronic problems or at least one big piece of the puzzle. Of course, now we just have to figure out how to deal with it. Quote Link to comment Share on other sites More sharing options...
katilac Posted February 24, 2014 Share Posted February 24, 2014 Jean, I know some symptoms are hard to pin down b/c you already have the fibro going, but I wanted to ask if you've had any nose bleeds or other symptoms you don't usually have? Or that are noticeably worse? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 24, 2014 Author Share Posted February 24, 2014 Jean, I know some symptoms are hard to pin down b/c you already have the fibro going, but I wanted to ask if you've had any nose bleeds or other symptoms you don't usually have? Or that are noticeably worse? No nose bleeds. Most annoying symptom - swollen throat and sometimes swollen tongue. Some chest tightness (inflammation) which makes me winded easily. Only minor sinus pain but the ENT says that the sinuses are the cause and that there are red streaks coming down my throat from the sinuses. Quote Link to comment Share on other sites More sharing options...
gaillardia Posted February 25, 2014 Share Posted February 25, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Liz CA Posted February 25, 2014 Share Posted February 25, 2014 It just sounds awful all around. I am glad you like your ENT. Catwoman suggested in a previous thread that you may go up a notch on the medial ladder and seek help from someone at the Mayo Clinic or Johns Hopkins. I have no clue what this would involve but when you have been so sick and nobody in WA can touch it, is this something you would consider? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 25, 2014 Author Share Posted February 25, 2014 Liz, I'd consider it but I'm not sure that no one in WA can touch it. I've gone to a primary (internal med. doc) and an ENT. (In the past I've gone to a rheumatologist, neurologist and a gastroenterologist but those were dead ends and were before we knew that I definitely had this sinus problem.) Quote Link to comment Share on other sites More sharing options...
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