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Medical Forum / Diseases and Disorders / Sinusitis / January 2008gammunex for sinusitus
Update: I last posted in August. Infusing 250ml gammunex monthly after years of chronic sinusitis. IgG1 and 3 within point of low. Do prescribed CVID as a favor so insurance would cover. I went from constantly sick ( and you know that feeling, weak, depressed, unable to work) to only about two infections per year, that clear with treatment /antibiotics. The infusions cost about $2700 per month . I switch jobs hence insurance next month. They have Anthem with an HSA . $2500 deductble. So, the first one is on me EVEN IF THEY APPROVE. Plus the new employer is smaller. They will wonder ( know) who suddenly jacked their health insurance costs ( I am in the biz, know how it works). Also, I have taken the low dose macrolide antibiotics ( Judy, you still out there?). Could it be, end of the day, that is the real thing that has kept infections at bay ? Even with the infusions, I took a macrolide holiday for a few months, and got my first infection at the time about 90 days out . I'm out here. It's hard to sort it out with two variables: all I can relate is my personal experience: I have IgG subset deficiency, with documented poor response to pneumovax, and after 5 surgeries, I've done very well on low dose biaxin, for around 5 years now. My allergist, who is very smart and thoughtful, told me that a similar patient whom he sent to Boston was told to take the macrolides. So, it works for me. I never went the immunoglobulin route. If it the cost will be prohibitive, you could try the macrolides again, and if you flare despite them, it's a strong arguement for the medical necessity of the immunoglobulins. (I did a stint in insurance, and you have to prove the need for expensive treatments: failure of less expensive treatments is a good start.) Good luck. I watched Sicko a couple of weeks ago, and it seemed tame to me. He could have hit harder on this mess of lack of universal, affordable health coverage. Judy > Update: I last posted in August. Infusing 250ml gammunex monthly after > years of chronic sinusitis. IgG1 and 3 within point of low. Do [quoted text clipped - 12 lines] > macrolide holiday for a few months, and got my first infection at the > time about 90 days out . > I'm out here. It's hard to sort it out with two variables: all I can > relate is my personal experience: I have IgG subset deficiency, with [quoted text clipped - 32 lines] > > - Show quoted text - Thanks Judy. I can still flare with the macrolide ( what dose do you take ? 500 or 250 mg per day?) . But yes, to know which is the most helpful, one must be eliminated. I could write a book ( seriously) on the bungled mess that is our health care system. I have worked 14 years for a managed care carrier owned by a large hospital system. I interfaced with Fortune 500 company benefits people and know the underwriting side of insurance to boot. In addition to the absurd financing of healthcare in this country ( causing the underclass to have limited or no access to decent care) the actual delivery of care has not changed much. Arguably , it is worse. Group practice managers run providers no differently than do car dealership managers running the service repair areas.Time. Revenue. Tic toc. In my own case, hours ( hundreds) of research is required to get anywhere near the care required if out of the box even slightly. Thyroid. Sinusitis . They all sing from the outdated text book. Most posters here no doubt know docs will prescribe ten days of antibiotics at a time for years on a patient, do surgery, and repeat --and make the patient seem a fool if not improving. Don't these docs have any sort of treatment algorithms to stage a patient? Lazy. Uncaring. 75% of them in my experience. And when one does care, they are stymied by the insurance system . I feel so bad for all those folks who depend on the docs they see to have answers. You darn near need the answer when you walk in, then appeal for the care you wish. It took me ten years of hell to even arrive at a place where I received infusions or low dose macrolides. Most docs would scoff. Finally found one who cared > I feel so bad for all those folks who depend on the docs they see to > have answers. You darn near need the answer when you walk in, then > appeal for the care you wish. It took me ten years of hell to even > arrive at a place where I received infusions or low dose macrolides. > Most docs would scoff. Finally found one who cared glad you found one who cared at least, even if answers are slow/tough in coming. i saw an endo for the 1st time last week & i swear each doc visit feels like i'm prepping for a court case - healthy until proven ill, with the burden of proof on me. this one grunted as an intro, glanced at my labs while on the phone, pronounced me healthy & was ready to boot me out until my husband got emotional in describing how his formally athletic & hike the grand canyon wife can barely walk a block most days. i had an idea of some of the tests i wanted but could tell i didn't have enough leverage to push it, so i walked out with round 1, while preparing for the next day in court. ellen > > I feel so bad for all those folks who depend on the docs they see to > > have answers. You darn near need the answer when you walk in, then [quoted text clipped - 12 lines] > could tell i didn't have enough leverage to push it, so i walked out > with round 1, while preparing for the next day in court. Wow, Ellen. Empathy right back at'cha. Yours is my story, too ... and, to be sure, that of many of us -- represented or un-represented on this venue. I'm sorry. I'm a "recovering triathlete," so I understand the notion of still remembering "life outside the cage," while being so emphatically /in/ the cage right now. When Shakespeare and The Simpsons fail, I tend to quote "The Rock:" "We nurtured the hope that there /was/ hope." And that's what we do. I gotta' tell you where I'm at ... today. In my case (and Doc Judy's, and Duke's, and ... perhaps others'), there's a quantifiable, clinically recognized "primary immune deficiency." I'm guessing (that's even a generous term) that there's -- quite simply -- something fundamentally wrong with the immune system of most of us who struggle with this. There may ALSO be mechanical, drainage, etc., but ... even the inflammatory/allergic process IS, at its core, an immune issue, too, no? IgG1 and IgG3 /seem/ to deal with, among other things, viruses. It also predisposes to sinopulmonary infections (yep: us). - Last week, IV H2O2 and 25 /grams/ of IV vitamin C. This week, round two, but upping the dosage of both. In total, I'll do four weeks of 1/wk IV's of each. EVEN within the fear literature of BigPharma and FDA stuff, I couldn't find any compelling reason not to. Instead, I found ample clinical evidence of the anti-inflammatory properties of C, and of the antimicrobial (virus, fungi, and bacteria) properties of H202. - I also started taking 500mg bid of Colostrum. RCCT (Randomized, Controlled, Clinical Trials) data shows it boosts your IgG and IgG subclass levels. Hmm. I'm a little light there. - And zinc. I started in with zinc supplements. - Vitamin D3 (comes up here occasionally). I'm borderline low. I'm in for 2,000IU a day. - Garlic. I love it, so ... easily increased in cooking, for me. - My diet's already pretty good, so I don't have too much pare-down to do there. I'm going to do the research that I can to understand what other things enhance or attenuate immune function. To my thinking (not so hot. I'm still lurking here!), that's the "root cause." If we can enhance our bodies' ability to fight against omnipresent .... stuff ... then maybe we can reduce the incidence of infection, AND help to slow disease process for other, more insidious, stuff. Mayo did NOT like my idea of using the juicer to increase veggie intake. Thought it was too concentrated, too much. I dunno. I may have to respectfully disagree with that one, based entirely on nothing at all :-) Be well. The Grand Canyon ... isn't going anywhere. That's a good thing! > I'm going to do the research that I can to understand what other > things enhance or attenuate immune function. To my thinking (not so > hot. I'm still lurking here!), that's the "root cause." Make sure you look at HPA stuff; low vit D status is extremely common in Cushing's and other endocrine conditions, as is sinus infection, since cortisol regulates immunity, I guess. > If we can enhance our bodies' ability to fight against > omnipresent .... stuff ... then maybe we can reduce the incidence of > infection, AND help to slow disease process for other, more insidious, > stuff. Yup. > Mayo did NOT like my idea of using the juicer to increase veggie > intake. Thought it was too concentrated, too much. I dunno. I may > have to respectfully disagree with that one, based entirely on nothing > at all :-) Mayo is actually right in this case, juicing is a terrible idea. What it does is give you a big shot of the carbs/sugar while separating it from the fiber and body of a fruit or vegetable, the parts that are important for health and that help slow down the blood glucose response. You'd be better off with purees. They're talking about making it too concentrated a dose of sugar, which is the metabolic fate of all carbohydrates. Susan > x-no-archive: yes > [quoted text clipped - 6 lines] > Cushing's and other endocrine conditions, as is sinus infection, since > cortisol regulates immunity, I guess. Mayo found nothing else along those lines BUT the borderline D. AM/PM cortisol, TSH, etc., all normal. The quacks ... uh ... docs that are doing the IV h2o2 and vitamin C are, allegedly, testing other similar things. I'll see those tomorrow. I'm sure you're right, I'm just not sure what to make of it if the traditional clinical markers aren't there. It also represents another /huge/ world of study -- a place where you seem to have /lots/ of info and I have virtually none. If you were to recommend one thing that I could DO or NOT DO that might be a totally unsophisticated way to glean a little insight ... what might that be? > > Mayo did NOT like my idea of using the juicer to increase veggie > > intake. Thought it was too concentrated, too much. I dunno. I may [quoted text clipped - 9 lines] > concentrated a dose of sugar, which is the metabolic fate of all > carbohydrates. I thought, though, that what you said is primarily true of FRUIT juices, but dramatically /less/ true of veggies, many of which are quite low in sugar. For example: a typical juice for me might include: garlic, red leaf lettuce, romaine lettuce, a /whole bunch/ of spinach, celery, cucumbers, garlic, and an apple or two and a carrot or two for a touch of sweetness. I get lots of fiber, generally, through my diet, so ... though I agree that it's pitching some of the good stuff ... I'm not sure that it's a /net/ negative (particularly if I'm /increasing/ my net veggie intake by juicing, rather than juicing in lieu of eating). It seems, from looking at sites re: diabetes, that veggies are generally considered a Good Thing, no? [scratching my head.... as per usual ;-)] > Mayo found nothing else along those lines BUT the borderline D. I'm sure that a) they don't know how to look for it and b) even if they saw the signs, they wouldn't add them up. My endo sees patterns, even in in range results that indicate variable HPA functioning. > AM/PM cortisol, TSH, etc., all normal. The quacks ... uh ... docs > that are doing the IV h2o2 and vitamin C are, allegedly, testing other > similar things. I'll see those tomorrow. I had smack dab middle of the range normal cortisol when I was in an Addisionian crisis. It's NOT the whole story. My receptors weren't working. And even my 24 hour urinary collections have only been abnormal once, my serum only twice, yet I have a pituitary adenoma and a thickened left adrenal. Some folks test for *years* before capturing enough diagnostic highs to be diagnosed. > I'm sure you're right, I'm just not sure what to make of it if the > traditional clinical markers aren't there. They may be there on other days, or you may need to see someone who thinks outside the box, like my endo in LA or one I know of in SC. > It also represents another /huge/ world of study -- a place where you > seem to have /lots/ of info and I have virtually none. If you were to > recommend one thing that I could DO or NOT DO that might be a totally > unsophisticated way to glean a little insight ... what might that be? You get tested with repeated testing, midnight serum, a lot of other markers, like cortisol binding globulin, CRH, ACTH, fasting insulin, anti diuretic hormone. You find a doc who knows that TSH and T3 are lowered by cortisol, so you can be hypothyroid and have a LOW normal TSH. I have severe hypokalemia even with low normal potassium; it's not getting into cells very well. Sodium, potassium, aldosterone, all sorts of endocrine tests exist and those guys just use the sloppy, unreliable, broad ones. > I thought, though, that what you said is primarily true of FRUIT > juices, but dramatically /less/ true of veggies, many of which are > quite low in sugar. I'ts true of any carbohydrate; they're ALL sugar to your pancreas. With the veggies, there's nothing good about throwing out the fiber and drinking vitamin water. > For example: a typical juice for me might include: garlic, red leaf > lettuce, romaine lettuce, a /whole bunch/ of spinach, celery, > cucumbers, garlic, and an apple or two and a carrot or two for a touch > of sweetness. What would be your goal, though? Take a vitamin supp if that's it. Fiber is of enormous value, you want whole foods, not a lot of water extraction and some vities, right? > I get lots of fiber, generally, through my diet, so ... though I agree > that it's pitching some of the good stuff ... I'm not sure that it's > a /net/ negative (particularly if I'm /increasing/ my net veggie > intake by juicing, rather than juicing in lieu of eating). You're not increasing your net veggie intake, you're increasing your water intake, mostly. :-) You're leaving the veggies in the juicer. > It seems, from looking at sites re: diabetes, that veggies are > generally considered a Good Thing, no? > > [scratching my head.... as per usual ;-)] Yes, veggies are the best thing for diabetics, to replace starches. WHOLE veggies, though, not juiced, which is all water and carbs and none of the bulk. Susan > neil0...@yahoo.com wrote: > [quoted text clipped - 16 lines] > thickened left adrenal. Some folks test for *years* before capturing > enough diagnostic highs to be diagnosed. That all makes sense for me. They may be able to test for 1,000 things, but we still comprise a million. The notion of "snapshot" or "slice in time" is horribly true, too. I logged (yeah, literally) my temperature for several months. It followed a /bit/ of a pattern (that did NOT match standard circadian data), but ... if the doc took my temp at 8:30am ... and it was normal ... you /knew/ they dismissed my 179 data points (using two diff thermometers, using my healthy-as-a- horse wife as a control). > > I'm sure you're right, I'm just not sure what to make of it if the > > traditional clinical markers aren't there. > > They may be there on other days, or you may need to see someone who > thinks outside the box, like my endo in LA or one I know of in SC. I may wind up hitting you up for the LA (L.A., right? Not Louisiana?) name at some point. One thing (jumping ahead) always seems to gnaw at me, though: again, knowing NOTHING about the other med issues that you've faced ... is there /much/ that you'd make bank on that genuinely helps improve those problems any better than ... say ... a true paleo diet ... or a life like the Hunzas: http://thepdi.com/hunza_health_secrets.htm ... to cite but one example. I'm (way out in left field) really starting to believe that our industrialized society may have, in large part, created much of the illness that's rife among us. I know not of what I speak, but wonder what forensic anthropologist, and the like, find when they evaluate remains from way long ago for how they lived and what ailed them. These days (many will relate), I'm too tired to do what I know is best for me. With the new neuritis thing, any exercise is but a faded memory. See where I'm going with this? Right now, I'd like to "use" Western medicine for its lab tools. Give /me/ the numbers and let /me/ decide the best course of Tx. THAT, at least, is (some measure of) science. So ... presuming that it was adrenal/endo ... do I /need/ "them," or ... is there a way out without "them?" :-) > > It also represents another /huge/ world of study -- a place where you > > seem to have /lots/ of info and I have virtually none. If you were to [quoted text clipped - 9 lines] > of endocrine tests exist and those guys just use the sloppy, unreliable, > broad ones. Thanks, Susan. That's good info. I actually think the quack docs (reminiscent of Dr. Donsbach, of Baja California infamy) might be good ones to talk to about additional/unconventional labs. They push myriad treatments, though, that are total Leaps O' Faith. No science exists. Now THAT scares me. > > I thought, though, that what you said is primarily true of FRUIT > > juices, but dramatically /less/ true of veggies, many of which are [quoted text clipped - 29 lines] > WHOLE veggies, though, not juiced, which is all water and carbs and none > of the bulk. I wish I could muster a valid argument, but ... alas ... YOU did :-) I'll go steam some broccoli! > I may wind up hitting you up for the LA (L.A., right? Not Louisiana?) Yes, Los Angeles. > name at some point. One thing (jumping ahead) always seems to gnaw at > me, though: again, knowing NOTHING about the other med issues that [quoted text clipped - 5 lines] > > ... to cite but one example. Unless you have to spend many hours of labor daily catching, collecting and preparing your food and burning off glucose, I'd avoid a grain based diet like the plague. I eat no starch, I eat grass fed meat and dairy and wild caught fish to the greatest degree possible. I eat a ton of colorful, high fiber veggies by volume, not by calorie density, and my diet is about 50% fat, but no transfats. > I'm (way out in left field) really starting to believe that our > industrialized society may have, in large part, created much of the > illness that's rife among us. I know not of what I speak, but wonder > what forensic anthropologist, and the like, find when they evaluate > remains from way long ago for how they lived and what ailed them. Heart disease, diabetes and cancers are diseases of civilization, and really have the farming of grains at their base. Great for growth, bad for bodies. > These days (many will relate), I'm too tired to do what I know is best > for me. With the new neuritis thing, any exercise is but a faded > memory. I've been able to completely control my diabetic kidney and nerve damage and control my bg in non DM numbers even with hypercortisolemia with diet alone when unable to exercise, I know that feeling very well. > See where I'm going with this? Right now, I'd like to "use" Western > medicine for its lab tools. Give /me/ the numbers and let /me/ decide > the best course of Tx. THAT, at least, is (some measure of) science. > > So ... presuming that it was adrenal/endo ... do I /need/ "them," > or ... is there a way out without "them?" :-) I don't know. I mean, I hope so, most of my gains have come from "my body, my science experiment" attitude. But good info comes from good docs, but even the good ones aren't good at everything. My LA doc isn't up to snuff on DM and diet, IMO. But he's so open to learning, an intensely curious researcher, with many research interests. There are labs where you can order some of your own tests, a reliable one, I'm told, is zrtlabs.com. > Thanks, Susan. That's good info. I actually think the quack docs > (reminiscent of Dr. Donsbach, of Baja California infamy) might be good > ones to talk to about additional/unconventional labs. They push > myriad treatments, though, that are total Leaps O' Faith. No science > exists. Now THAT scares me. I went to an anti aging doc a couple years ago just because they will give you anything you want, test anything you want, for a buck. :-) But you can get a lot of good info, for a price, from the mail order do it yourself labs. I don't know if you can get cortisol binding globulin and sex hormone binding globulin from them, though. >>Yes, veggies are the best thing for diabetics, to replace starches. >>WHOLE veggies, though, not juiced, which is all water and carbs and none [quoted text clipped - 3 lines] > > I'll go steam some broccoli! Put some butter or olive oil or cheddar sauce on it, too! :-) When you give up the carbs, the fats are good for you, you can't absorb enough vitamins without it, it promotes immune, brain and heart health, fights inflammation. If you low carb, be prepared to feel crummy for a week or more. Susan I need to make a correction; I completely *reversed* my diabetic kidney and nerve damage with diet, even without exercise. I was unable to control it or reverse anything when eating starches and exercising (weight training and treadmilling) several times per week. Susan > x-no-archive: yes > [quoted text clipped - 81 lines] > > Susan > neil0...@yahoo.com wrote: > Unless you have to spend many hours of labor daily catching, collecting > and preparing your food and burning off glucose, I'd avoid a grain based > diet like the plague. I eat no starch, I eat grass fed meat and dairy > and wild caught fish to the greatest degree possible. I eat a ton of > colorful, high fiber veggies by volume, not by calorie density, and my > diet is about 50% fat, but no transfats. My grandmother's like a hundred and something. She eats an amazingly healthy diet that smacks of what you're talking about, though she has a soft spot for yams. [in the voice of Homer Simpson] Stupid, lousy Hunzas. > > These days (many will relate), I'm too tired to do what I know is best > > for me. With the new neuritis thing, any exercise is but a faded [quoted text clipped - 3 lines] > and control my bg in non DM numbers even with hypercortisolemia with > diet alone when unable to exercise, I know that feeling very well. Wow. Impressive. A possible Path to Off-the-Couch-dom. Fish and veggies for dinner tonight, then. I'd invite you all, but .... [insert generic and only partially viable excuse here]. > > See where I'm going with this? Right now, I'd like to "use" Western > > medicine for its lab tools. Give /me/ the numbers and let /me/ decide [quoted text clipped - 10 lines] > labs where you can order some of your own tests, a reliable one, I'm > told, is zrtlabs.com. Thanks for that reference. Great saying, too: "my body, my science experiment." I, too, look for docs to join /my/ team, but ... in my rather imperious fashion, I feel that I'm calling the audibles. Sometimes, that notion -- even if it's never expressed, only implied -- can cause smoke to emanate from their ears. :-) > > Thanks, Susan. That's good info. I actually think the quack docs > > (reminiscent of Dr. Donsbach, of Baja California infamy) might be good [quoted text clipped - 7 lines] > it yourself labs. I don't know if you can get cortisol binding globulin > and sex hormone binding globulin from them, though. I'll check into it. Seems like a little spit could go a long way (trite, but true). > >>Yes, veggies are the best thing for diabetics, to replace starches. > >>WHOLE veggies, though, not juiced, which is all water and carbs and none [quoted text clipped - 5 lines] > > Put some butter or olive oil or cheddar sauce on it, too! :-) [in the most gender neutral of sentiments] Aw, Dude. That's what I'm talkin' about! (I'm also big on Bragg liquid aminos for stuff like that, though ... I have this nagging suspicion that I'm about to hear that /it/, too, is killing me). ;-) > When you give up the carbs, the fats are good for you, you can't absorb > enough vitamins without it, it promotes immune, brain and heart health, > fights inflammation. Atkins-ish on its face, no? > If you low carb, be prepared to feel crummy for a week or more. How would I/we notice? ;-) > My grandmother's like a hundred and something. She eats an amazingly > healthy diet that smacks of what you're talking about, though she has > a soft spot for yams. Yams (sweet potatoes, actually) don't spike a lot of folks. I can eat them when my adrenals are low, like now, and not spike. > [in the voice of Homer Simpson] Stupid, lousy Hunzas. Folks gotta eat what's available. > Wow. Impressive. A possible Path to Off-the-Couch-dom. Fish and > veggies for dinner tonight, then. I'd invite you all, but .... > [insert generic and only partially viable excuse here]. Oily fish, salmon, frex, great choice. I'd bring a pinot noir, but no one's asked me... > Thanks for that reference. Great saying, too: "my body, my science > experiment." I, too, look for docs to join /my/ team, but ... in my > rather imperious fashion, I feel that I'm calling the audibles. > Sometimes, that notion -- even if it's never expressed, only implied > -- can cause smoke to emanate from their ears. :-) I just left the eye doc for the second time in a MONTH because he was running so late, and there were four people ahead of me. I'd scheduled the last appt. of the day, then CALLED to be sure he was running on time before leaving my house. Fu*k them, if they don't like people demanding respect. I'm done giving egolingus. I was polite, but firm with the useless ENT I saw the other day, too. Didn't even thread the scope up my nose before pronouncing me free of any sinus problem. I let him have it about saying C-T is 100% accurate for sinusitis; "I guess I've been reading the wrong research papers, then." > I'll check into it. Seems like a little spit could go a long way > (trite, but true). But you do need some blood tests, and those anti aging quacks are always good to go for anything you want, if you got the scratch. > [in the most gender neutral of sentiments] Aw, Dude. That's what I'm > talkin' about! (I'm also big on Bragg liquid aminos for stuff like > that, though ... I have this nagging suspicion that I'm about to hear > that /it/, too, is killing me). Just your tastebuds. :-) > Atkins-ish on its face, no? Except for no two weeks of induction is necessary for most folks, except the most morbidly obese; it really shuts down their appetites in a way nothing else does. >>If you low carb, be prepared to feel crummy for a week or more. > > How would I/we notice? ;-) LOL. I was jittery as hell, and brain fogged *more than usual* at that time. And needed extra potassium due to water bloat loss at the beginning of ketosis. Susan On Dec 12, 5:35 pm, neil0...@yahoo.com wrote: > > neil0...@yahoo.com wrote: > > Unless you have to spend many hours of labor daily catching, collecting [quoted text clipped - 84 lines] > > How would I/we notice? ;-) Neil: Did you ever get back on the Sporanox? I ask only because even though it is very expensive, it appears to work for you (and me). I just want to suggest, strongly, that you guys try, say, 20,000 iu of vit D3 (not ergocalciferol) daily for a few days or a week and report back here. Unbelievable improvement and drainage, I'm finally off abx and draining like crazy. If my cilia weren't croaked, I wonder if I'd be cured? Just my anecdote, wanting experiences from others. Susan > Neil: > Did you ever get back on the Sporanox? > I ask only because even though it is very expensive, it appears to > work for you (and me). Good to hear your voice again, Elizabeth. I join the others in welcoming you back, and in hoping all is well :-) I lost Rx drug coverage for a while (should get it back shortly), so ... I'm doing meds on the cheap, if at all, these days. I'm still not entirely convinced that Sporanox is what made a diff in my case, anyway. I just don't know. I do see a fair amount of risk, then (hepatoxicity), in going with something so "harsh" when it's of unknown benefit. I actually seem to get on fairly well using the WaterPik with the sea salt water lavage solution, augmented with grapefruit seed extract. Based on the advice of a couple of pretty research oriented, and wonky, physicians, I've restricted the addition of H2O2 to a "prn" basis, if and when I think I'm fighting something. They both commented about its strong oxidative properties. I've also done three rounds of IV H2O2 and high dose (25-35g) vitamin c (all out of pocket $), and am now taking beta glucan, vitamin d (currently at 2k IU/day, but will increase slowly), Colostrum, zinc, Laterosporus (a probiotic w/a big appetite for fungi), acidophilus, NutraFlora, and the Ken Jan herbal supplement. I feel like I'm getting too old and too wise to say that "all this seems to be working" because .... I'm just whistling past the graveyard, but .... other than the California wildfires (I was too tired and wiped out by the brachial neuritis thing and stopped the lavage. Bad boy) ... I've been doing fairly pretty rather sort of almost kind of okay, sinus-wise. Been thinking about your son since I got this brachial neuritis crap. Was he able to rehab his arm fully and return to his former weightlifting/other pursuits?? Neil On 12/29/07 1:47 PM, in article 42670cf2-71bf-4fcd-aa74-09cfebab588f@l6g2000prm.googlegroups.com, >> Neil: >> Did you ever get back on the Sporanox? [quoted text clipped - 38 lines] > > Neil Doces of vitmin c larger than 500 mg can leach calcium out of the body. We see persons who have taken large C doses with ostoeporosis. > Doces of vitmin c larger than 500 mg can leach calcium out of the body. We > see persons who have taken large C doses with ostoeporosis. I know lots with osteoporosis who don't take it. Sheesh. Susan I know there was some recent concerns about mega doses of C, and I couldn't remember the concern: even Andrew Weil stopped recommending more than 500mg Did a quick Google search, and found this at Harvard School of Public Health, no reference to C and osteoporosis. I see a lot of osteoporosis made worse by low D levels. And a lot of pseudohyperparathyroid due to low D. (The PTH and Calcium levels reverse with repletion.) Judy http://www.hsph.harvard.edu/nutritionsource/vitamins.html > On 12/29/07 1:47 PM, in article > 42670cf2-71bf-4fcd-aa74-09cfebab5...@l6g2000prm.googlegroups.com, [quoted text clipped - 46 lines] > Doces of vitmin c larger than 500 mg can leach calcium out of the body. We > see persons who have taken large C doses with ostoeporosis. Sigh. The high-dose C thing was a three-time-only deal. The research that I could do showed it to be a powerful antioxidant (I was trying to minimize potential issues from the powerful oxidant, h2o2) and a powerful anti-inflammatory. Clearly, I have to be careful (and think I am), but .... conventional medicine really knows /nothing/ about this brachial neuritis, except that -- where the etiology is insidious/idiopathic (NOT trauma- related) -- it seems to be an immune-mediated issue. That seems to explain the relative successes of trials of low-dose IVIG. Nobody's anxious to Rx that, though (I don't know that I blame them), and the epidural really didn't do anything, so ... I was in a position of having to try something. I get lots of calcium, so .... with a little luck ..... Thanks much for the heads- up, though. Neil, There's so much that traditional medicine has no clue about how to treat. So, I would try "unconventionlal" therapies as well. I'm sure a couple of blasts of vitamin C only potentially gave you GI upset. Look, only on this site are biofilms as the underlying mechanism for chronic sinusitis even discussed. If you're faced with a problem that medicine has no solution for, it's worthwhile to consider some alternatives. Personally, I'm treating my first "real" sinus infection in almost 3 years, from a cold that lingered for almost 2 weeks. It's disappointing, but when I think about how I lived on antibiotics, and was running out of alternatives before the daily biaxin, I realize that only by doing some research on my own--and this is crucial--and having an open minded ENT, was I able to alter the course of my chronic sinusitis. Previously, I'd had 5 surgeries, and chronic courses of quinolones. Also, the etiology, the IgG subsets, were only figured out by an astute allergist. Medicine has significant limitations, and when you run up against it personally, no one is going to do the research except you. I hope that it's an inflammatory process, and it resolves on it's own--with some help from you. Judy On Dec 29, 11:10 pm, neil0...@yahoo.com wrote: > Sigh. > [quoted text clipped - 16 lines] > > Thanks much for the heads- up, though. > Neil, > There's so much that traditional medicine has no clue about how to > treat. So, I would try "unconventionlal" therapies as well. > I'm sure a couple of blasts of vitamin C only potentially gave you > GI upset. Fortunately, not even, though I tend toward a rather robust gut (counting my blessings....), that -- if called upon to do so -- would placidly digest a Buick. > Look, only on this site are biofilms as the underlying mechanism for > chronic sinusitis even discussed. [quoted text clipped - 10 lines] > Also, the etiology, the IgG subsets, were only figured out by an > astute allergist. I say this in a very positive sense: you refer to this guy repeatedly. When he retires (you've implied he's got one foot out the door), will our world lose the benefit of his knowledge/approach, or will he stay in the game somehow (eg, teaching, writing a book, ... something)? Can we freeze some of his stem cells? ;-) > Medicine has significant limitations, and when you run up against it > personally, no one is going to do the research except you. > I hope that it's an inflammatory process, and it resolves on it's > own--with some help from you. Thanks much, Doc. Five surgeries? Wow. I feel like a piker ;-) ... and one with no intention of overtaking your record. I'm sorry you've got the bug again. Did you culture this one?? Though, clearly, it's a bit of a PITA, I do like the theory: know the enemy and tailor your tactics around it. Other than the macrolides, what do you turn to for the fix when you're in the acute phase? Have you tried the GSE? Do you steam? Will you/ do you/have you increased intake OF particular supplements (eg, vitamin D)? I hope its course is short, its footprints evanescent, and its its spirit easily broken. Not a great way to go through the holidays and the new year, huh? Feel well. Neil, I'm using Augmentin, it's worked for me in the past, and with the low dose macrolides, I avoid using them for acute flares. When I first went on the biaxin, I emailed Anders Cervin about flares, and that's what he recommended--I couldn't believe he responded. He said not to stop the biaxin while you add the Augmentin. Actually, after 3 doses, I don't really have any more symptoms. But, I gave the stupid cold 10 days, with eucalyptus steam treatments, tons of tea and honey, lots of steamy showers, bactroban in the nose, doubled beta glucan and I got the classic "double sickening"--after 10 days, I got exhausted, feverish, achey and my head clogged up, and got pussy and painful. I gave that two more days to go away before I conceded defeat. (And it does feel like defeat.) I had actually made a follow up appointment with my ENT for this month, because I haven't come to the office in 3 years, and I was all set to tell him that I hadn't had an infection in all that time...(I made the appointment because he rx'es the biaxin and every so often I like to make sure we're in agreement on what we're doing here.) Not so ironically: I've been infected on the left side/maxillary region before, and it has been felt to be due to over-zealious surgery done in Boston in 2000. The surgeon wouldn't ever see me back when I was infected from day one, but he called a few times, and "knew" that he had created an area that would "crust" and tend to form infections. (He wouldn't treat the post op infection, but offered more surgery to "fix" the left side.) My local ENT ended up doing two more surgeries to fix the mess.... My allergist is a wonderful eccentric person. He's semi-retired, brilliant, and just amazing. He's orthodox, and will answer his cell phone, except for the sabbath. Once, when my daughter was ill, I called, and he was waiting for his sister in law to come out of surgery, halfway across the country, and I apologized and got ready to hang up, and he said: "I have time, what's the problem?" When we worked at the HMO, they would add a phlebotomist at the lab when he worked because he ordered so many tests--and yet he understands them, and follows them. At my practice meeting we have a graph of our ages, and it's sort of like a geriatrics lecture... Elizabeth posted that using antibiotics when the cilia are trashed by a virus makes sense and prevents all sorts of damage. And I took her advice. I know she advocates (wisely) for the anti-inflammatory antibiotics, but the Augmentin, hopefully, will do the job. Yeah, being sick stinks,and since my husband had it first--and got his first sinus infection that I can recall from it--and I followed with it a week later, it's been a month of illness in our house. At least the Patriots won last night. Judy On Dec 30, 12:18 pm, neil0...@yahoo.com wrote: > > Neil, > > There's so much that traditional medicine has no clue about how to [quoted text clipped - 54 lines] > > Feel well. > Neil, > I'm using Augmentin, it's worked for me in the past, and with the [quoted text clipped - 9 lines] > gave that two more days to go away before I conceded defeat. (And it > does feel like defeat.) Judy: Go Pats! Glad to hear that you are better. It is not defeat to take the Augmenten, Babe, It's just good sense. If the medical community did not feel responsible for the evolution of antibiotic resistance they could think more clearly about when they give the most bang for the buck and the need for combination treatment. There are so many bugs out there, as well as other archarea, antinomycetes and fungi, no one antibiotic can possibly cover them all. If you kill off just one of the community, the other species moves in. For me a combo has worked best. I really think that that is a clinical trial that should be done in sinusitis. In 1981 I had a little thing that I need to do for the military. I needed to fly, and my sinuses were ozzeing green. I wound up being given scripts for Augmenten, Euthromycian, and something else, Bactrium maybe, and Nystatin all at the same time, and while I took them for about 2 weeks, it worked within a day or so and my liver did not drop out on the floor or go for an unsupervised stroll or anything. > It is not defeat to take the Augmenten, Babe, > It's just good sense. [quoted text clipped - 16 lines] > within a day or so and my liver did not drop out on the floor or go > for an unsupervised stroll or anything. That was last Feb through April for me, Elizabeth. By the time it was over, I was on Doxy, Augmentin, Amoxy, Zithromax, and ... I can never remember the other one. A few weeks after starting the /last/ abx, I got better. But nobody ever cultured. Who knows what it really was. Maybe a self- limiting virus that would have resolved, in time, withOUT the abx. Of course, the ENT is /sure/ that we finally "fixed it" or got the right combo of drugs. Of course. "Who knows?" I believe this is my mantra du jour. > > I'm using Augmentin, it's worked for me in the past, and with the > > low dose macrolides, I avoid using them for acute flares. When I first > > went on the biaxin, I emailed Anders Cervin about flares, and that's > > what he recommended--I couldn't believe he responded. I've learned NEVER to hesitate to reach out to the best and the brightest. I've been amazed at how readily some will respond. When I was chasing down the BAK/my eyes connection, I ping'd the best ocular toxicity guy, in France. His response was thorough, thoughtful, and comprehensive. THAT, to me, makes a doc worth flying around the world for. A blowoff, or a two-word answer that demonstrates absolutely not a moment's thought, are signals that they can't be bothered. Gross generalizations, to be sure, but..... > > He said not to > > stop the biaxin while you add the Augmentin. Actually, after 3 doses, [quoted text clipped - 5 lines] > > gave that two more days to go away before I conceded defeat. (And it > > does feel like defeat.) How awful. I'm sure there's not a reader on this NG who doesn't go through it, in their minds, as you describe it, nearly replicating every symptom in themselves. But what /about/ the culture idea (for the next one, G-d forbid)? It's rather simplistic for me to say, to be sure, that we shouldn't take ANY abx if there's NO chance of efficacy, but ... what if you had a virus? Would you have wanted to throw Augmentin at it? Could your allergist, or somebody (heck, could one of your partners at your practice) get a culture on you ... early on ... and see what you've got going on?? This notion -- culture EARLY, don't treat without, and treat with the minimum amount of the most narrowly focused drug shown to be effective against what you've GOT -- has been percolating in my pea-brain. I'm sort of resigned that I want to do this from now on, if/when I get another acute infxn. I forget which IgG subclasses you were deficient in, but ... if the lit is to be believed, "most of the antibody responses to viral antigens are of the IgG1 and IgG3 subclasses. It has been reported that IgG3 antibodies are the most effective for virus neutralization" [1]. So ... I (we?) could be more susceptible to VIRAL infxn than bacterial. More food for thought: http://www.ncf-net.org/conference/seetranscript.htm#Immune%20System In which IgG3 is singled out as a major factor in CFIDS, specifically, and in higher incidence of latent, detectable viruses in the blood, generally. So ... if I have a virus ... I want to know. It seems my cilia are already pretty darned dyskinetic. I'd have to really think about the risk:reward equation of abx in a /known/ viral infection. I might rather stick out my h202/gse regimen and up my immunopotentiating stuff. I get the notion that -- even IN a viral infxn -- abx w/ antiinflammatory properties have some utility, but .... maybe there are other things with equal efficacy and less risk. Just the thought for the day. Hope you feel better soon. "Pats?" That's football, right? ;-) Neil Who knows absolutely nothing about sports, and can't even bluff his way through :-) [1] http://www.medscape.com/viewarticle/466336_4 HAPPY NEW YEAR, ALL! Thanks for the support: I missed in in all the spam postings. I'm feeling better, but this thing has wiped me out. Personally, for me, I don't see the need for a culture in such an isolated incident. When I had chronic, unremitting infection after the surgery in 2000, it took my ENT a while to find the spot to culture, and he was looking, and he did find the dead bone and the multi- resistant pseudomonas that guided our decision: quinolones and debridement surgery. Ironically, I haven't seen my ENT for a couple of years, and just before this hit, I made a follow up appointment, all set to tell him that I'd been infection free. Never say never. And Elizabeth, you're right: appropriate use of antibiotics is correct. In this case, it stopped the obvious secondary infection fairly quickly. And I keep the biaxin going. I've been on combo's before, and they make so much sense, really only the quinolones have the "full" coverage of gram positives/ negative/anerobes/atypicals, but you hate to use them up. And there are holes in their coverage, and significant side effects. Some day, some one will do the right study, but don't hold your breath. My Cochrane review article, back in the days of academia, showed me how "evidence" can be garbage in/garbage out. Judy > > Neil, > > I'm using Augmentin, it's worked for me in the past, and with the [quoted text clipped - 34 lines] > within a day or so and my liver did not drop out on the floor or go > for an unsupervised stroll or anything. > Thanks for the support: I missed in in all the spam postings. I'm > feeling better, but this thing has wiped me out. [quoted text clipped - 57 lines] > > within a day or so and my liver did not drop out on the floor or go > > for an unsupervised stroll or anything. Judy: You are right about the culture thing, when I know that 99% of what is out there does not grow in culture, and I still have not been able to get good statistics of the false negative rate for species that we can culture, but it seems to run something like 60 to 70%. And then there is the fact that a lot of pathogens such as staph and enterococcia are considered "normal flora" in low numbers but if they are there in biofilm form the dense population will not be found unless the doc takes the sample from just the right spot. About the quinolones.......... They are the only antibiotic that for me does more harm than good. I know that they are almost a specific for pseduomondas, but they make me so ill with aching feet and thumbs, and nausea and the film comes back soon after they are stopped, that I can not justify taking it. Biaxin at least lessens one set of symptoms without causing another set. Elizabeth, I try to avoid the quinolones as well: I get dizzy, insomnia, feel horrible. I'm completing the Augmentin and it's worked. I extended the course because our old horse got horribly ill with colic, and I've lived at the barn for the last 4 days with all the dust and allergens. I'm going up now to see if he made it through the night. It's been horrible. He's old, but still in good shape, and watchin him suffer is misery. The first vet was useless, and just as he was fading away, his former vet--who's become a state employee, called and told me who to call to try and save him. Turned out to be my dog's vet, and she showed up in 15 minutes. It's touch and go. Judy > > Thanks for the support: I missed in in all the spam postings. I'm > > feeling better, but this thing has wiped me out. [quoted text clipped - 74 lines] > Biaxin at least lessens one set of symptoms without causing another > set. > Elizabeth, > I try to avoid the quinolones as well: I get dizzy, insomnia, feel [quoted text clipped - 8 lines] > vet, and she showed up in 15 minutes. It's touch and go. > Judy Good luck, Doc. Many's the time I've said that I have family members whom I'd rather lose than to lose a pet. We're pulling for ya. > Elizabeth, > I try to avoid the quinolones as well: I get dizzy, insomnia, feel [quoted text clipped - 87 lines] > > Biaxin at least lessens one set of symptoms without causing another > > set. Judy: Colic as in founder, or colic as in twisted intestine? Elizabeth, He died--it was a huge bowel impaction. We tried to manage it with fluids and mineral oil, but he was in so much pain. His gut shut down. At the last minute today, the vet--who showed up late and rushed, because it was her "day off", decided he was dehydrated, and I should ship him to Tufts, although he wasn't a surgical candidate. She had me so upset with the implication that I was a bad owner, and it was obvious he was in shock, and likely septic--I'd been walking him for hours, and he hadn't been able to eat for 5 days, and was miserable. My husband showed up, and said that it was time to do the humane thing. So, now I feel horrible that he's gone--he was a great, smart Appaloosa, and we'd had him for a long time, he was around 24, and it was made worse by the vet impying that I didn't go the extra mile-- send him hours away, in a futile effort which would have terrified him. I'm not so sure she'll be my dog vet anymore. Founder is laminitis of the hooves, and he had some early Cushings, and we had him on a low carb diet/chromium and magnesium supplements, and took digital xrays of his feet to verify that he didn't have founder a few months ago. There's gas colic (essentially harmless), colic due to twisted intestine, and colic due to impaction, and he had the last one. According to the vet it was the largest impaction she'd ever felt. He was old, and it had been cold, and he wasn't drinking much. Or it was a tumor. Sinuses fine, feel horrible. Judy > > Elizabeth, > > I try to avoid the quinolones as well: I get dizzy, insomnia, feel [quoted text clipped - 90 lines] > Judy: > Colic as in founder, or colic as in twisted intestine? > Elizabeth, > He died--it was a huge bowel impaction. We tried to manage it with [quoted text clipped - 12 lines] > him. > I'm not so sure she'll be my dog vet anymore. Judy, I'm so sorry you lost your horse, and that he'd suffered at the end. It sounds as if you did everything for him that made sense. Sometimes it's just not enough. I'm also sorry that your vet turned out to be so insensitive and lacked compassion for your care of your horse. Susan > Elizabeth, > He died--it was a huge bowel impaction. We tried to manage it with [quoted text clipped - 23 lines] > Sinuses fine, feel horrible. > Judy Wow, Judy. That's another member of the family, likely a part of your kids' lives for as long as they can remember. I'm so sorry. Never doubt that you did all that you thought was right. We all know -- and maybe you more than any of us -- that there are no bright line right/wrongs in medicine. Everything is an abstraction. Everything is a "best guess." I worked at a farm camp for a few summers of my adolescence, riding horses every day. In Europe, last year, my (horse-owning) friend (my first love) took us to the "French Comte" where we rode through the forests and the stunning French countryside. It rekindled my incredible love, respect, and awe concerning horses. Their personalities are as diverse and distinct as ours. I've talked with a few others, battling ongoing health issues. As much richness as we've all agreed an animal would bring to our lives, the combination of the responsibility (that we feel ill-prepared to take on) and the knowledge that they will, at some point, die makes it more than some of us want to take on. And your family's just lived that. May the pain fade fast, and the wonderful memories live on forever. Thanks. It is so hard, and the guilt the vet caused just adds to the pain. We got Gabe for my then 11 year old daughter--we were leasing him, and kind of got manipulated into buying him. It's a committment, and I feel like we're responsible to take the best care of our animals that we can. (My daughter is now a college graduate and lives an hour away, but still came down to bare back him most weekends.) Over time, I've learned that sometimes I have to draw the line: my first dog (amazing shepherd mix from the pound in Pittsburgh) had bladder cancer, and I couldn't stand to lose her at 12, so I took her to Tufts for three cycles of chemo, but said no to the cystoscopy that the vets wanted to do, for their own interest. She got 9 good months from a limited intervention, and died very suddenly at the end. Our next dog, was an inbred, purebred shepherd--from one of the medical assistants, and there I was at Angell Memorial (Boston), getting her a total hip replacement because of her severe dysplasia. And she was nasty before we could relieve her pain. She lived to be 14, and died-- under the care of the same vet and the final week of her life, as she was dying from extreme old age, and cancer, the vet had me bring her in daily for IV fluids, and take her home at night with the cather in-- now I wonder why. Our current dog, a sweet rescue mix: aussie and shepherd, got a root canal last month. My husband is a dentist, and she fractured one of the two important teeth, and had a pulp exposure. We found that there are only two dental vets in Massachusetts. So, the vet who refused to acknowledge that he was suffering, and more treatment was essentially cruelty, she knows I do these over the top things for the dogs. She won't be our vet in the future. Neil, horses communicate in such subtle ways: it's all about smell, and subtle movements, and herd dynamics. Gabe always snuffled my head and neck, and he was a great horse. Watching him pant in pain for days was torture. My sister is a serious dog person. She says that the whole animal owner/vet dynamic gets crazy. I've seen a lot of nutty "horse people" stuff over the years. One woman said horse lore was like religion: strongly believed and impossible to disprove. Enough venting. Just wish I didn' feel so guilty on top of the grief. You know how we share these stories about physicians who have their own agendas: Susan had a great phrase about kissing another doctor prince, and finding a frog, well, it's not just doctors for humans... Judy On Jan 10, 12:38 pm, neil0...@yahoo.com wrote: > > Elizabeth, > > He died--it was a huge bowel impaction. We tried to manage it with [quoted text clipped - 52 lines] > > May the pain fade fast, and the wonderful memories live on forever. > Enough venting. If you say so. > Just wish I didn' feel so guilty on top of the grief. Don't. You have better judgment than the vets and you used it, and between the two of you women, YOU loved the horse. > You know how we share these stories about physicians who have their > own agendas: Susan had a great phrase about kissing another doctor > prince, and finding a frog, well, it's not just doctors for humans... Actually, Judy, I mentioned kissing frog doctors and having them turn into a$$holes instead of princes. Susan > Thanks. It is so hard, and the guilt the vet caused just adds to the > pain. We got Gabe for my then 11 year old daughter--we were leasing [quoted text clipped - 97 lines] > > > May the pain fade fast, and the wonderful memories live on forever. Judy; Unfortunately dying is part of living. We just have to live to make it worth it. I am sure that you did what you could and that he loved you and would not want to add to your pain. Thanks to everyone. I finally did the research on the internet last night--I hadn't been home for days--and understand the medical situation. It helps a bit. Sorry to get so OT. Every medical professional I know, and especially hospital nurses, joke that they want "DNR" tatooed on their chest. I think when you've experienced extreme medical intervention with limited potential to cure, you know first hand that there is always something else to do, but it has to be done ethically and thoughtfully. Or in the case of our sinuses, they run out of options early, and blame the victim. Thanks for the support. Judy > > Thanks. It is so hard, and the guilt the vet caused just adds to the > > pain. We got Gabe for my then 11 year old daughter--we were leasing [quoted text clipped - 103 lines] > I am sure that you did what you could and that he loved you and would > not want to add to your pain. Re sinusitis, actually we are a bit ahead of the game today. We understand the physiology better - no more removing turbinates - and we understand biofilm's role too. Now if we can only figure out where those damn polyps come from. > Re sinusitis, actually we are a bit ahead of the game today. We understand > the physiology better - no more removing turbinates - and we understand > biofilm's role too. Now if we can only figure out where those damn polyps > come from. Literally last year, it was proposed to my daughter, by an expert from Lahey, that she have her turbinates removed. So, the understanding of physiology isn't universal. Less is clearly more: leave the nose with it's anatomy intact, but there is still another "world expert" in Boston, whom you've cited before, who believes that eradicating all sinus anatomy is key. Unfortunately, after surgery at his hands, my sinus anatomy is destroyed. Didn't help with infections, but left me with an empty nose. Only treating the biofilms with macrolides has made a difference. So, the "we" is relative. Judy > > Re sinusitis, actually we are a bit ahead of the game today. We understand > > the physiology better - no more removing turbinates - and we understand [quoted text clipped - 13 lines] > So, the "we" is relative. > Judy By the way Anyone know of a good open minded ENT in Columbus Ohio? And Er, uh Doc G? The polyps are a classic multispecies biofilm configuration. Freeze, slice, and dehydrate and sputter, or treat with acetone and stain with india ink and you can see the sac structure. I used to think it took fungi to make polyps, but there have been some reports of bacteria themselves assuming a filamentous form. I am not sure that they what they think they saw, but....... On 1/11/08 6:25 PM, in article 0d91f04b-43ed-4c0f-a94f-67828aada57e@k2g2000hse.googlegroups.com, "truehawk" >>> Re sinusitis, actually we are a bit ahead of the game today. We understand >>> the physiology better - no more removing turbinates - and we understand [quoted text clipped - 24 lines] > reports of bacteria themselves assuming a filamentous form. I am not > sure that they what they think they saw, but....... Dear Judy, I am horrified that anyone would propose turbinectomy today. I suppose I live in a sheltered world of top ent persons. A good book on empty nose syndrome ( although you could write the book yourself is Having Nasal Surgery? Don¹t You Become an Empty Nose Victim By Christopher Martin, N.C.S.P. I have proposed a course on ENS at next year's academy - let's see if it is accepted. > On 1/11/08 6:25 PM, in article > 0d91f04b-43ed-4c0f-a94f-67828aada...@k2g2000hse.googlegroups.com, "truehawk" [quoted text clipped - 41 lines] > I have proposed a course on ENS at next year's academy - let's see if it is > accepted. Re polyps http://www.ncbi.nlm.nih.gov/pubmed/18188015?ordinalpos=1&itool=EntrezSystem2.PEn trez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum Role of staphylococcal superantigens in upper airway disease. So sorry about the loss of your horse, Gabe. I lost Jackson this week, he was a cat, so I know how bad it can hurt. You were right, I would find a new vet. Becca Becca, thanks, and I'm sorry about Jackson. My former office mate just emailed me that her vet made her feel bad when she said no to a pacemaker for her 15 year old cat who had renal failure and severe arthritis. It's so hard to lose them. They're family. Judy > So sorry about the loss of your horse, Gabe. I lost Jackson this week, > he was a cat, so I know how bad it can hurt. > > You were right, I would find a new vet. > > Becca > Elizabeth, > He died--it was a huge bowel impaction. We tried to manage it with [quoted text clipped - 120 lines] > > - Show quoted text - again, I have not dropped in of late. I am so sorry about your horse. It would be very hard for me to stick with that vet. It might have been hard for me to not lower the boom on her right then and there. But, again, I am sorry for your loss. Pets become family. > > Elizabeth, > > He died--it was a huge bowel impaction. We tried to manage it with [quoted text clipped - 112 lines] > > > > > I know that they are almost a specific for pseduomondas, but they make > > > > > me so ill with aching feet and thumbs, and nausea and the film comes Duke, Thanks. I just received a lovely letter from our original vet--who knew him for a decade, and became the state vet. He wrote that he fully supported our decision, and that we couldn't give our horse his youth back, but as a geriatric horse, facing a very uncertain course of action, who already had other medical concerns that impacted his quality of life, that he was "one of the good ones" and such a wonderful horse that he deserved to die with dignity and with the comfort of the people who loved him around him. His use of "I fully support you" helped me so much. The vet who said I was using using euthanasia as a way out of pet ownership actually called me back a week later, and had no recollection of saying that. She talked for an hour and told me her job was to support me. In her defense, we called her in, on the advice of the former vet, late on a Sunday night, she only knew our horse for a few days (although she's known us and our dogs for years) and she was under considerable stress on the last day. Only our original vet, with his long knowledge of us, could see the full picture. My former office mate at the residency was told to put a $4000 pacemaker into her dying ancient cat, and given a hard time when she refused. Another colleague who consults with vet hospitals--he's a psychologist, used our horse as an ethics case, and they admitted that the vets' behavior is to do everything: the animal suffers, the owner suffers, but the vets feel better. I had my IgG subsets run again, different lab, same numbers, at this lab, I'm still IgG1 low, now IgG4 low and IgG 3=22 which is the bottom number of their range. My allergist also tested immune response to pneumovax--moderate. He wants to do tetanus next. We agreed that IgG1 is the biggest player, and the picture is still 1,3 and deficiency. I tested a patient this week who had no IgG 2 or 4. None. It made a lot of sense as to some of her issues. I'm sending her to some good ID people. Did they ever find your films at Kennedy's office, It was due to his JAMA article that I got my disastrous surgery in 2000--the pendulum has swung to cut less since then. Judy > > > > > back soon after they are stopped, that I can not justify taking it. > > > > > Biaxin at least lessens one set of symptoms without causing another [quoted text clipped - 9 lines] > been hard for me to not lower the boom on her right then and there. > But, again, I am sorry for your loss. Pets become family. > Thanks for the support: I missed in in all the spam postings. I'm > feeling better, but this thing has wiped me out. [quoted text clipped - 59 lines] > > - Show quoted text - again, I need to drop in more often,....I see a lot here about surgery made problems worse not better...I could write forever ( and probably did here, couple years back). I know the second major surgery I had in the 90s had to leave all sorts of damage. I was infected for weeks after and the doc was indignant I would plead for antibiotics. Which I eventually stayed on and off for years. Via various docs. Dr Kennedy of Uof P has written exstensively about the post-op being more ( or as) critical as the op. but ENTs specializing more in surgery, just like to cut and run so to speak. Then this whole topic if cultures and multi-meds. I brought all that to their attention over the years too. I could cry looking back at the inept lab "kids" taking sinus swabs all wrong...and having my doc look at me ike I was from Mars when I asked if what he was prescribing covered negative gram.... And on the upside, somehwere herein Judy notes reaching out to the top docs....one can be surprised ! After reading Kennedy's book ( I believe I became aware of on this sight) I read some of his papers on- line. He of sinsus surgery fame. I called his office at the university and one of his staff gave me his personal e-mail I worte him a concise history and asked him if he would look at my most recent cat scans and MRI ...since I dont think my doc(s) ever have much to say. He agreed ! I went to " Mailbox" got a tube, sent priority. They lost them ( here, not at U of P) . Ha. I was always curious about "hot spot" or low grade bone infection that he speaks of. Oh well. It was in the interim I was found to have lowered IGg 1 and 2 , so I pursued that along with Judy etc., ow dose macrolide. > Neil, > I'm using Augmentin, it's worked for me in the past, and with the [quoted text clipped - 108 lines] > > > Feel well. geez, i wish you were feeling better. & that neil was feeling better. & susan & everyone else. but i am glad that elizabeth's liver didn't drop off over the ocean. in this scant clear headed moment, just wanted to offer my thanks. finding this group after my feb-april sinus/antibiotic extravagnanza has helped me tremendously. while much still remains a miserable mystery, i have gained much knowledge & support &, as a result, can at least feel like i have a sense of direction. & i'm sure in the not too distant future, i'll be asking opinions on the infection du jour. & if that made no sense, i blame it on the high/low estrogen/cortisol/testosterone/progesterone/faeries/gremlins/ ETCETCETCETC best wishes for all that is good in the year to come, ellen > I'm out here. It's hard to sort it out with two variables: all I can > relate is my personal experience: I have IgG subset deficiency, with [quoted text clipped - 32 lines] > > - Show quoted text - Judy, comments on docs...present company excluded and I know I exaggerate . Or do I ? I have my experience. I have pull in the system. And still....One of the best docs ( as recognized by colleagues)in this town of one million, was my internist. I finally got some balls rolling with him. He packed it in at about 49-50 years old and became a hospitalist for a large speciality practice. I dont blame him. I would not wish being a primary care doc , regardless of payment system, for anything. They ( you?) run all day against the clock and then have to hassle precerts etc. Rrequires very expensive RN staffing or it is impossible. And yes, try getting a cal through to Anthem ( for eg) one of the largest carriers. Or UHC. .. Hey, Duke.... If you don't mind my asking ... what were your IgG1 and IgG3 levels??? If it interests you, I'll dig up mine.... I'm supposed to get mine repeated: the lab slip is on the fridge. Mine were definitely low, about half of expected. My allergist gave me another pneumovax, and wants to repeat the response and the IgG subsets. Duke: my son in law to be is a resident in family medicine. I still tell him that there's time to make a career move. Personally, I can only stand to do clinical work part-time, and teach part-time. I got burnt out in an HMO setting. I still work 12+ hour days, while I'm booked for 7.5 hours--the rest of the time is spent on paperwork and calling 800 phone numbers who put me on hold for hours. I've been telling residents and medical students for over a decade that things will get better. I'm waiting. Judy On Dec 11, 7:20 pm, neil0...@yahoo.com wrote: > Hey, Duke.... > > If you don't mind my asking ... what were your IgG1 and IgG3 levels??? > > If it interests you, I'll dig up mine.... > I've been telling residents and medical students for over a decade > that things will get better. I believe they call that "faith," right? ;-) > Hey, Duke.... > > If you don't mind my asking ... what were your IgG1 and IgG3 levels??? > > If it interests you, I'll dig up mine.... I apologize I have not checked in for so long. IgG subclass 1 Ser qn 420Lr ( ref range 422-1,292) IgG subclass 3 Ser qn 38Lr ( ref range 41-129) BTW , IgM 42 ( ref 60-300) , but nothing can or arguably need be done there. As I write this, due to changing jobs /insurance etc I am about one week past when I usually infuse. No sign of sinus issues, but have digestive issues ( I never get ) and a mild flu like bug. The former may be anxiety perhaps . But up to now I had been feeling energetic and robust again. Waiting for insurance to activate and getting pre-authed. ( yes I took COBRA for the one month down time but of course I do not show upp yet in Anthem/Wellpoint's system) > > If you don't mind my asking ... what were your IgG1 and IgG3 levels??? > I apologize I have not checked in for so long. > [quoted text clipped - 11 lines] > COBRA for the one month down time but of course I do not show upp yet > in Anthem/Wellpoint's system) Interesting. I'm at: IgG1 = 411 (normal: 490-1140) IgG3 = 10 (normal: 20-110) listed as "unknown clinical relevance," and yet ... you imply that IVIG has been a pretty dramatic help in your overall health. I, too started new insurance. I'm going to see whether they can do a trial with me, particularly since this G-dawful "brachial neuritis" stuff seems immune-mediated AND seems to respond to IVIG. I'm sorry you slipped through the bureaucratic cracks, and hope you can get back to your regimen, and to good health, soon. On Jan 12, 1:20 pm, neil0...@yahoo.com wrote: > > > If you don't mind my asking ... what were your IgG1 and IgG3 levels??? > > I apologize I have not checked in for so long. [quoted text clipped - 31 lines] > > - Show quoted text - I am new to this group. I've had sinus problems for about 10 yrs which the last few yrs has gotten severe. I've had 4 surgeries and missed weeks & weeks of work. Antibiotics by mouth no longer work for me when I have an acute infection so I've had numerous rounds of IV antibiotics over the last few yrs. Last Feb, I developed MRSA sinusitis. I also have an immune deficiency. Two Dr's (infectious disease & immunologist) have said that I need IVIG yet my insurance denies it. I am sooooooo frustrated. I am tired of being sick all the time. My levels are: IgG1 - 302 (382-929) IgA - 78 (81-463) IgG - 673 (694-1618) IgM - 622 (48-271) Has anyone else had insurance problems? If so, any suggestions????? Jenise On Jan 12, 2:20 pm, neil0...@yahoo.com wrote: > > > If you don't mind my asking ... what were your IgG1 and IgG3 levels??? > > I apologize I have not checked in for so long. [quoted text clipped - 31 lines] > > - Show quoted text - wow ( and sorry I have been gone) yours are lower than mine ! From wha I read there are more tests and things I should be checking and possibly the new carrier will force---but the doc office told me they are easier than the carrier I came off of ( which was managed care ). All I can tell you is, before I got on it I was so sick I had given up. A good day was like mild flu. A bad day was, well, everyone here knows...Bad. Whether it is congenital or my immune system got pummelled by years of horrible treatment and way too many antibiotics....? There is plenty to read on sub class defiencies, less clear is what to do about it. My doc simply wrote me up as CVID ( which technically is not true) and shoved it through. No one asked to see more labs ( yet). Some will say I cooked my goose for buying massive life insurance , or ...Hell, I am 53. Kids grown. All I know is I was so so so tired of being sick and tired. I begged for the gammunex. He wrote the Rx. within 3 months I felt good. At five months I dare say great. And, I would feel the yuks come back as I got closer to the due date for the monthly dose. If you do not get it, I cannot say enough good things as well about the low does macrolides Judy speaks to. I do that too. I am sure it knocks down inflammation. Same doc lets me do this. I believe I needed the infusions to get out of the rut. I am 4 weeks past due for one now , and feel so so. Not as robust. But I am positive without the low dose antibiotics I would be sick as a dog. > On Jan 12, 2:20 pm, neil0...@yahoo.com wrote: > [quoted text clipped - 59 lines] > > - Show quoted text - You just described exactly how I feel...Ican't believe it! A good day is like the mild flu! - that's me! I am sick all the time and very, very tired of feeling like this. I too, am begging for IVIG and 2 specialists believe I need it, but insurance says its not medically necessary. Don't even get me started!!! I want to feel energetic again...People that haven't been through this do not understand. My previous job thought that I faked being sick. My lab values are listed on jan 14 post on this subject. Does anyone have any ideas or has anyone else had this problem with insurance? Anyone have any suggestions? I want to feel good so badly!!! Jenise > > On Jan 12, 2:20 pm, neil0...@yahoo.com wrote: > [quoted text clipped - 72 lines] > > Jenise Jenise, Having worked in insurance: there is a case pertinent to NY, Vermont that says that the medical doctors who deny care are liable for malpractice Please fight this: there are multiple levels of appeals. Write a letter with and include articles, letters from your MD"s and get the first appeal. If they deny it, go for the next level. Also, the state boards regulate insurance, and can be appealed to for assistance. I know when you feel sick it's hard to fight. Please do it. The web site for Primary Immunodeficiencies will provide a page that supports your medical necessity. Also, they HATE bad publicity. A threat of going to the papers or an article will make a difference. One patient hired a lawyer, and just a visit from him made the denial go away. If you need it, they have to provide it. Judy > > > On Jan 12, 2:20 pm, neil0...@yahoo.com wrote: > [quoted text clipped - 91 lines] > > - Show quoted text - Judy Thanks for the advice. My immunologist had recommended IVIG for the last 1 1/2 -2yrs and insurance won't approve it. Last Feb, I developed MRSA sinustis and was sent to a wonderful ID Dr. He also says I need IVIG. It really angers me that insurance calls the shots and can deny what 2 Dr's have said I need. Anyway, I am ready to fight this. I am so tired of not feeling good. I just mailed a letter to the state insurance commisioner. Yesterday, I spent a lot of time doing research on the computor and making phone calls. I will see the ID Dr on Tues and I think he is going to redraw my levels. Jenise > > > > On Jan 12, 2:20 pm, neil0...@yahoo.com wrote: > [quoted text clipped - 104 lines] > my levels. > Jenise Jenise, I'm glad you're taking up the fight: usually the benefit excludes "experimental" drugs, but IVIG isn't experimental. Also, medical necessity is the buzz word: this is medically necessary to prevent severe and potentially disabling and/or life threatening infections. Two experts have recommended this as usual and required therapy. The first line of denial is a bunch of utilization review nurses, with a medical consultant who is busy and may or may not have any knowledge of immune deficiencies. The second level of appeal must be reviewed by a specialist-such as an infectious disease doctor. Ask who issued the denial and make sure a specialist is involved in the second level of appeal. Also, ask the name of the medical director who signed off on it. Accountability is key. Good luck. For three years I worked for a medicaid HMO, and I did these sort of reviews. They were the good guys: non-profit, interest |
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