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Medical Forum / Diseases and Disorders / Arthritis / March 2005Overdue Update
Isn't it grand when a doctor finally listens to you? I've been quite ill with upper respiratory stuff for the past month. In fact, in retrospect, I've been on 5 different antibiotics since Nov for sinus infections, bronchitis, the abscess tooth problem and a sore in the nasal passage. In early Jan I had pneumonia and was able to catch it quickly but bronchitis came back later in Feb and I thought I was going to die! I've never had it so bad without it being pneumonia. I saw an ENT dr who gave me stronger abx, an abx nose spray and with slight improvement decided I should be on two more weeks of abx and then get a CT scan of my sinuses. I had discussed IV antibiotics with him and he said we would discuss it when I got the CT if I still had the sinus infection but all he did when I got the CT even tho' it showed infection still was more oral abx, now two at once! While I was starting to show an improvement, it was nothing to rave about. I still have major drainage, a low grade fever when off abx and incredible fatigue. And I smell funny - my sweat smells funny and the junk in my nose and throat smell really funny. Very unpleasent. I saw my rheumy and neuro for quarterly check up, both on Monday. They both wanted me to see an infectious disease doctor to find out what we can do to get these infections cleared up as 1- I have been off Enbrel since early January and can't go back on it until the infections are cleared up and 2 - I am beginning to show signs of MS symptoms and they are worried I might go into an exacerbation if I can't get these infections under control. When I called the ID, I was told I couldn't get in for three weeks. So then they both wanted my gp to admit me to the hospital so that I could get the work up sooner. Of course, my GP doesn't really understand the urgency and refused to either give me IV abx or admit me to the hospital. Not that I really wanted to go to the hospital, still not sleeping in a bed yet since the fractures (recliner is all I can sleep in). So my rheumy sent my records to the ID and PHONED HIM! How great is that! And he saw me today. Spent about 30 minutes reviewing my medical history and the time line of these infections. Read my records and reports. Listened to my heart and lungs sitting and laying down. Checked out the spleen and liver. And Listened to me! And he gets the importance of not having infections with MS. He thinks my IGG is low and ran a ton of blood tests - 8 tubes of blood!. He said if it is, we can boost it. He said frequently people with auto-immune disease have this problem. I haven't had this panel of tests since 97 so it will be interesting to see the difference. All the immune stuff we get when first getting diagnosed. He didn't feel the Enbrel would be responsible for this but rather auto-immune disorder itself. He also said IV abx for 4 weeks! I knew I wanted IV abx but was totally unprepared for getting them for so long! Never heard of the abx before --meropenen. So Monday they get me pre-certified with my insurance company. Hope they approve it. And then I go to get a mid-line put in and get my first dose in the office to watch for side effects and then trained to give myself 3 doses a day for the next four weeks. I go back to him for blood test results and follow-up on the 13th of April. I'm a bit worried about the mid-line. Does it hurt to get it? Is it uncomfortable? How often do they have to change it? Anyone ever had this abx - meropenen - before? Didn't find much info on it online. So that's it. I havn't been reporting all this stuff to you cause it just was so mundane. I felt like crap and have been sleeping so much especially when I had the coughing. You cough so much that you just wear yourself out. So I'm here -- feeling a bit better and worried about what next week will bring.  SignatureCyberhugs, DianeW It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry Diane, so sorry you have had to go so long with all this junk going on without having a doctor really pay attention. And am so glad with you that you finally have one who is concerned and is going after the culprit. Pray he will have good results and you will soon be feeling on top of the world! Gwen > Isn't it grand when a doctor finally listens to you? I've been quite ill > with upper respiratory stuff for the past month. In fact, in retrospect, [quoted text clipped - 49 lines] > I'm a bit worried about the mid-line. Does it hurt to get it? Is it > uncomfortable? How often do they have to change it? Anyone ever had this > abx - meropenen - before? Didn't find much info on it online. > [quoted text clipped - 3 lines] > So I'm here -- feeling a bit better and worried about what next week will > bring. >I saw my rheumy and neuro for quarterly check up, both on Monday. WOW! You have a lot on your plate right now, and here I am whining about a little cold! I know nothing about a midline or anything else. I just wanted to send my best wishes for a speedy recovery. I hope that the IV abx do the trick and you are soon on track again. With thoughts and prayers, Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. >I'm a bit worried about the mid-line. Does it hurt to get it? Is it >uncomfortable? How often do they have to change it? Anyone ever had this >abx - meropenen - before? Didn't find much info on it online. Don't know the antibiotic. A med line is an I.V. that is put into a vein for administration of antibiotics or fluid. They will use a topical anaesthetic when they place it. It could be in your arm or more likely in a vein in your chest wall. You will inject it with a bit of saline (most likely) after infusing the drug, although some may still use Heparin, and this will keep it patent so you can use it for the time period you need. Injecting it is a sterile procedure but you will be well taught before you do it. There are different names for the lines depending upon what type and where it is. Several people here have had central lines of some type and can tell you about them. Here's hoping you get these nasty bugs cleared out of your system quickly. --- Joan >>I'm a bit worried about the mid-line. Does it hurt to get it? Is it >>uncomfortable? How often do they have to change it? Anyone ever had this [quoted text clipped - 13 lines] > --- > Joan I've had them bugger up central lines on me twice. Make sure it's an experienced doctor putting it in, not a registrar (and certainly noone any lower down the hierarchy). They'll probably sedate you before the procedure if they put it into your upper chest, but it really depends on the line. They may put a PICC line into your arm, but those don't have a great track record infection wise (they absolutely will NOT put one in me due to the infection risk). In the future, I will only have the lines installed under xray. A registrar with an ultrasound probe hit my common carotid, and that wasn't very nice (I know it's a teaching hospital, but they gave some poor bloke a stroke down in the ER on the same day doing the same half arsed implantation procedure!!!). Under xray it's fine, a little pressure, no worse than an intramuscular injection, and then you're done. The arm ones are usually easier to install, but like I said, they have a higher infection risk. Signaturespammage trappage: replace fishies_ with yahoo I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ He said it would be in the arm and go up to the shoulder but not any further. He called it both a mid line and a picc line. They have a PICC nurse at his office that does it all the time. He was looking at my veins and said he didn't think she'd have any trouble. It's what she does. They have a whole dept that is all about giving IV meds. How do they get infected? That's just what I would need! My dad had a port in his chest for his chemo before he died. They put him under for that. -- Cyberhugs, DianeW It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exupéry > He said it would be in the arm and go up to the shoulder but not any > further. He called it both a mid line and a picc line. They have a [quoted text clipped - 3 lines] > they get infected? That's just what I would need! My dad had a port > in his chest for his chemo before he died. They put him under for that. A port is something different still, where they implant the entire thing under the skin and let it heal over (IIRC, of course, I've no experience with ports). Things that go from the outside of the body through the skin to inside a vein can allow bacteria to get in and attach to the plastic, reproduce, and then break off into the blood, causing some pretty serious infections. They'll instruct you what to do if you get symptoms or a fever. If you're no longer on immunosuppression, then your risk of infection is somewhat reduced, especially if your neutrophil counts are in the normal range. The PICC line is a relatively easy install, so I wouldn't worry too much. I have a friend here that has had one in her arm for TWO YEARS! Her doctors can't believe how well it's lasted, they've never seen anything like it (she has an autoimmune disorder as well). So don't worry about infection unless you get an infection. With the antibiotics that they'll be putting in through the line, I would imagine that the chances of bacteria getting a chance to grow there are well reduced :-) Cheers, Ari Signaturespammage trappage: replace fishies_ with yahoo I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ Glad to hear that you finally got a doctor to listen to you. It's so frustrating when you feel like you are caught in the middle and no one is listening. I'm also glad that you are getting the treatment that you need. I've had bronchitis and it's the pits. I can't imagine having it for as long as you have had it. I don't know anything about the drug you'll be getting or the procedure, but I'm sure it will all go well, and I'll keep you in my prayers. Hugs, Carole > Isn't it grand when a doctor finally listens to you? I've been quite ill > with upper respiratory stuff for the past month. In fact, in retrospect, [quoted text clipped - 56 lines] > So I'm here -- feeling a bit better and worried about what next week will > bring. Sorry you are having such a rough time of it. Hope the IV abx fix you right up. Sarah L Lol! Wonderful feeling when they finally listen - then shock at all the stuff they want to do! Sounds like you will get results with the ID doc. I hate to say it, doctors being so territorial and all, but is it time to have a chat with your GP? GPs rely on specialists and after working with you (hopefully) and knowing how long all these problems have been going on, this guy doesn't like the expert's approach to getting you healthy again. Maybe I'm just cranky today (and obviously you know your doc and I don't) but that sort of thing burns my butt. Hopefully I'm not speaking out of turn - after following your story for the past couple months, I'm feeling frustrated on your behalf ! Skip > Isn't it grand when a doctor finally listens to you? I've been quite ill > with upper respiratory stuff for the past month. In fact, in retrospect, [quoted text clipped - 56 lines] > So I'm here -- feeling a bit better and worried about what next week will > bring. Skip - I was thinking exactly the same thing. In fact, I told the nurse practitioner (she is the one I regularly see) at the MS clinic that I didn't think my gp "gets it" and ask her if she could recommend something for me to do to get him to understand. The GP takes excellent care of my mother. In fact, seniors are his specialty. I'm usually the youngest person in his waiting room. I started going to him when my previous dr retired because it was just easier to go to him when I took mother. And its an easier way to get to him when I need to talk to him about Mom since he knows me too. But maybe an internist who is more familiar with my needs in in order. Next week I'm going to have the National MS Society send him a doctor packet. He may or may not read it but I'm going to give that a try. SignatureCyberhugs, DianeW It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry Lol! Wonderful feeling when they finally listen - then shock at all the stuff they want to do! Sounds like you will get results with the ID doc. I hate to say it, doctors being so territorial and all, but is it time to have a chat with your GP? GPs rely on specialists and after working with you (hopefully) and knowing how long all these problems have been going on, this guy doesn't like the expert's approach to getting you healthy again. Maybe I'm just cranky today (and obviously you know your doc and I don't) but that sort of thing burns my butt. Hopefully I'm not speaking out of turn - after following your story for the past couple months, I'm feeling frustrated on your behalf ! Skip > Isn't it grand when a doctor finally listens to you? I've been quite ill > with upper respiratory stuff for the past month. In fact, in retrospect, [quoted text clipped - 3 lines] > came back later in Feb and I thought I was going to die! I've never had it > so bad without it being pneumonia. I saw an ENT dr who gave me stronger abx, > an abx nose spray and with slight improvement decided I should be on two > more weeks of abx and then get a CT scan of my sinuses. I had discussed IV > antibiotics with him and he said we would discuss it when I got the CT ifI > still had the sinus infection but all he did when I got the CT even tho' it > showed infection still was more oral abx, now two at once! While I was > starting to show an improvement, it was nothing to rave about. I still have > major drainage, a low grade fever when off abx and incredible fatigue. AndI > smell funny - my sweat smells funny and the junk in my nose and throat smell > really funny. Very unpleasent. > > I saw my rheumy and neuro for quarterly check up, both on Monday. They both > wanted me to see an infectious disease doctor to find out what we can do to > get these infections cleared up as 1- I have been off Enbrel since early > January and can't go back on it until the infections are cleared up and 2 - > I am beginning to show signs of MS symptoms and they are worried I might go > into an exacerbation if I can't get these infections under control. WhenI > called the ID, I was told I couldn't get in for three weeks. So then they [quoted text clipped - 12 lines] > tests - 8 tubes of blood!. He said if it is, we can boost it. He said > frequently people with auto-immune disease have this problem. I haven't had > this panel of tests since 97 so it will be interesting to see the > difference. All the immune stuff we get when first getting diagnosed. He > didn't feel the Enbrel would be responsible for this but rather auto-immune > disorder itself. > [quoted text clipped - 13 lines] > was so mundane. I felt like crap and have been sleeping so much especially > when I had the coughing. You cough so much that you just wear yourself out. > So I'm here -- feeling a bit better and worried about what next week will > bring. > Skip - I was thinking exactly the same thing. In fact, I told the nurse > practitioner (she is the one I regularly see) at the MS clinic that I [quoted text clipped - 10 lines] > doctor > packet. He may or may not read it but I'm going to give that a try. So glad you are being listened to. It's about time. You might ask the ID doc or the PICC nurse for a recommendation. Good docs w/high standards tend to recognize the same in other practitioners. And their staff hears about everyone! Also, don't discount a Family Practitioner. They are just like GP's but will do kids, labor and delivery, and even geriatrics. In terms of the office I go to (FP's) I found that since they cover such a wide range of care, they are very quick to send me off to a specialist if it looks like it needs any depth at all. Hope this line really does the trick for you. Stock up on acidophilus, the one with millions of live organisms per dose, not tens or hundreds. I get mine at a health food supermarket. Can't imagine your GI tract is in great shape after months on abx. And this abx is really gonna let your body know whose boss. Adelle Thanks for the suggestions Adelle. I do take the refrigerated kind of acidolphlis when I'm on abx. Couldn't live without it. ID doc said he would be giving me anti-fungal pills as well since I've been getting a yeast like skin rash already. I know what you mean about good docs sticking together. I don't think I would have gotten in as fast as I did if I hadn't been recommended to him by three different sources. Both my rheumy and my neuro are outstanding and well respected in the medical community. In fact, he told me my rheumy called him directly to talk me over with him. That goes a long way when the scheduler asks him what to do! All three of these doctors are the kind that review you before they agree to see you. They are so busy! But I'm lucky to have such "good docs" SignatureCyberhugs, DianeW It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry > Skip - I was thinking exactly the same thing. In fact, I told the nurse > practitioner (she is the one I regularly see) at the MS clinic that I [quoted text clipped - 10 lines] > doctor > packet. He may or may not read it but I'm going to give that a try. So glad you are being listened to. It's about time. You might ask the ID doc or the PICC nurse for a recommendation. Good docs w/high standards tend to recognize the same in other practitioners. And their staff hears about everyone! Also, don't discount a Family Practitioner. They are just like GP's but will do kids, labor and delivery, and even geriatrics. In terms of the office I go to (FP's) I found that since they cover such a wide range of care, they are very quick to send me off to a specialist if it looks like it needs any depth at all. Hope this line really does the trick for you. Stock up on acidophilus, the one with millions of live organisms per dose, not tens or hundreds. I get mine at a health food supermarket. Can't imagine your GI tract is in great shape after months on abx. And this abx is really gonna let your body know whose boss. Adelle > Hope this line really does the trick for you. Stock up on acidophilus, the > one with millions of live organisms per dose, not tens or hundreds. I get [quoted text clipped - 3 lines] > > Adelle Good advice,,,, I have to do the same because of taking Isoniazid for TB and it is the boss. Harv >>Hope this line really does the trick for you. Stock up on acidophilus, the >>one with millions of live organisms per dose, not tens or hundreds. I get [quoted text clipped - 7 lines] > and it is the boss. > Harv Be careful with the pill form of those 'friendly' bacteria! The pills have been known to produce infections in immunocompromised patients. I've been told never to take them by several doctors in regards to my trying to replenish my gut flora to prevent problems from antibiotics. Ari Signaturespammage trappage: replace fishies_ with yahoo I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ > Be careful with the pill form of those 'friendly' bacteria! The pills have > been known to produce infections in immunocompromised patients. I've been > told never to take them by several doctors in regards to my trying to > replenish my gut flora to prevent problems from antibiotics. > > Ari Hi Ari,,, Do you have any advice on what a person is suppose to do when the antibiotic a person has to take wipes out a persons gut flora? Harv >>Be careful with the pill form of those 'friendly' bacteria! The pills have >>been known to produce infections in immunocompromised patients. I've been [quoted text clipped - 7 lines] > > Harv We have a product here that's made from fermented milk called "Yakult" and there are similar products available worldwide (though not all are created equal in terms of friendly bacteria concentrations). They're usually sold (here at least) in shrink wrapped packs of five little containers in the dairy section of the supermarket. My doctors recommended using these instead for immunosuppressed patients. The pills are good for people who aren't immunocomprimised, but for folks with immune problems they're a 'no no'. Signaturespammage trappage: replace fishies_ with yahoo I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ RE Sinus infections. I mentioned previously that I have had one since late January. I also have Sjogrens, which complicates things a bit. Has anybody else with (dry nose) Sjogrens here had experience with Enbrel and sinusitis? Peter I don't have Sjorgens, but I have a doozy of a history with sinusitis - allergies since childhood - and I live where we have quite dry indoor air throughout our long winter. All that is just a prelude to ask if you've tried irrigating your sinuses. It has the dual advantages of flushing out the gunk and of introducing some moisture in the too dried out areas. Might be a real blessing with the Sjorgens complicating things. I know it sounds gross, but most of us who have tried it love the results so much that we don't care. There are lots of ways to do it, from using ear syringes to neti pots and rhino horns (those cost in the $15-$25 US range usually), to more expensive attachments for waterpiks that some folks love and some folks hate. You can google sinus irigation and learn a lot. In fact, there's been a lot of discussion about it on this group from time to time and you could do an advanced search on google groups for info. And if this is all repetition for you, my apologies! SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare > RE Sinus infections. > [quoted text clipped - 5 lines] > > Peter test >>>Hope this line really does the trick for you. Stock up on acidophilus, >>>the one with millions of live organisms per dose, not tens or hundreds. I [quoted text clipped - 14 lines] > > Ari Big Hugs Diane, and prayers that finally you will get some relief... What is wrong with some doctors? Hugs Cindy > Isn't it grand when a doctor finally listens to you? I've been quite ill > with upper respiratory stuff for the past month. In fact, in retrospect, [quoted text clipped - 70 lines] > So I'm here -- feeling a bit better and worried about what next week will > bring. Good question! You know -- I think they are so "no antibiotics" crazy that when someone like me comes along they have a hard time giving them long enough to kill whatever it is I have. I am constantly telling him that the typical 7 day treatment for a sinus infection or UTI will not work for me. So I take the 7 days and then go back 2-3 days after I'm off the abx and I still have it and then I get more abx or a different one. Not good -- the bacteria are too smart and they get resistant to the abx when that happens. I'll be anxious to see what the blood tests show for my immune system. If he's right about my IGG being low, I wonder how he plans on "boosting" it. I really like this ID. He's the one that took care of my Mom when she had MRSA and sepsis and CDIF as well. He also wrote a letter to the gp (same guy I have) with a protocol to follow when Mom does get an infection so she quit getting CDIF.and the gp does follow it. So I'm sure he'll do the same with me when the ID has me all figured out. SignatureCyberhugs, DianeW It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry Big Hugs Diane, and prayers that finally you will get some relief... What is wrong with some doctors? Hugs Cindy > Isn't it grand when a doctor finally listens to you? I've been quite ill > with upper respiratory stuff for the past month. In fact, in retrospect, [quoted text clipped - 70 lines] > So I'm here -- feeling a bit better and worried about what next week will > bring. > Good question! You know -- I think they are so "no antibiotics" crazy that > when someone like me comes along they have a hard time giving them long > enough to kill whatever it is I have. With immunocompromised patients, there may be more to it than this. When you give antibiotics, you increase the risk of fungal infections because you've thrown off the balance of natural flora in various parts of the body (digestive tract from mouth all the way through to anus, vagina, skin). Oesophageal thrush sucks...a lot... Some doctors have less experience balancing these variables than others. Ari Signaturespammage trappage: replace fishies_ with yahoo I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ {{{{{{{{{{{{ Diane }}}}}}}}}}}}}} Diane, sorry to hear you have had such a difficult time on the health front. Sure hope the IV antibiotics will do the trick once and for all and get you feeling better and able to be back on your enbrel. As far as a midline goes, a midline is somewhere between a regular IV and a picc line. It is shorter than a picc line, but longer than the regular IV and holds up much better than a regular IV. They are generally easier to place and don't usually require being done under a fluroscope or anything. Usually the person that is puts in a midline is trained very well in that area and only they are allowed to put them in. You can not draw blood from them. I definitely think it is time to have a long heart to heart with your primary care doctor and if this doesn't bring improved care for you, then it is time to find someone else! You really need to have someone caring for you that not only understands the special issues that involve your MS and your RA, but someone who will work with you to prevent any complications of those health issues. Sure hope you get to feeling better real soon, and please keep us updated as to how you are doing---we care! Hugs! Donna G {{{{{{{{{{{{Di}}}}}}}}} DeeTee ________________________________ DeeTee and Bob Taggart http://www.marykay.com/dtaggart3 http://mysite.verizon.net/vze8fwov/ ________________________________ > Isn't it grand when a doctor finally listens to you? I've been quite ill > with upper respiratory stuff for the past month. In fact, in retrospect, [quoted text clipped - 70 lines] > So I'm here -- feeling a bit better and worried about what next week will > bring. {{{{{{{{{{{{{{{{{Diane}}}}}}}}}}}}}}}}}}}} fighting a toe infection myself for two weeks. Got it two days after my last Remicade. I have been soaking it steadily like RD's PA said to do and it had not gotten worse until late Friday so I finally started an ABX I had in the house to premedicate. Got an appointment with PCP stand in on Monday. I think this is the same idiot who told me I couldn't dance on the foot last toe infection I had. Yeah right!! rofl Duckie > Isn't it grand when a doctor finally listens to you? I've been quite ill > with upper respiratory stuff for the past month. In fact, in retrospect, [quoted text clipped - 56 lines] > So I'm here -- feeling a bit better and worried about what next week will > bring. Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) ((((((((((((((((((Di)))))))))))))))))))) sounds like this ID guy will be a real blessing for you! I've been lucky - no bronchitis type stuff since my arthritis became active again - thank goodness. it was hard enough to cough for weeks on end when I was otherwise well. I hope and pray that the antibx kicks in quickly and you get some relief soon. It'd sure be great if they get you to the point of being able to sleep well at night. and here I am actually crossing my fingers that your IGG is messed up so they can treat it and help you out.............. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare |
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