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Medical Forum / Diseases and Disorders / Sinusitis / June 2006Surgery, surgery,surgery . . .
In my first bout of chronic (> 6mo) sinusitis, 5 years ago, I went to two ENTs. Both recommended surgery, I then went to a periodontist who quickly diagnosed an oral-antral fistula. He repaired that, the sinusitis subsided, I was infection free for three years. In my second bout, 2 years ago (over 6 mo), I went to three ENTs. All three recommended surgery. Went to a hematologist who quickly diagnosed impaired IGG levels. I've been on IVIG for the past 18 months - not one sinus infection since. Just anecdotal, I know, but . . . > In my first bout of chronic (> 6mo) sinusitis, 5 years ago, I went to > two ENTs. Both recommended surgery, I then went to a periodontist who [quoted text clipped - 7 lines] > > Just anecdotal, I know, but . . . Important lessons often come from anecdotes. To a hammer, everything is a nail. Susan > In my first bout of chronic (> 6mo) sinusitis, 5 years ago, I went to > two ENTs. Both recommended surgery, I then went to a periodontist who [quoted text clipped - 7 lines] > > Just anecdotal, I know, but . . . I agree with Susan. That's good to hear. I'm just curious how you thought to go to a tooth guy and a blood guy for a sinus problem? i hope you have continued success. After 5 sinus surgeries, complicated by a pseudomonas osteomyelitis from the third "big" one--done by a "world expert" who never would see me back, I discovered articles on low dose macrolides (erythromycin, biaxin, zithromax) for chronic sinusitis. My local ENT--the one who cleaned up the "expert's" mess, started me on one biaxin 250 mg/day (in 2002) and it has reduced my sinus infections from every 6 or more a year, to 1 or less a year. Also, my allergist found low IgG levels, but felt that with the biaxin, not to pursue any other therapy. Recently my older daughter who has been discovered to have low IgA levels, saw a regional expert, and he immediately wanted to book sinus surgery---she's opted for biaxin instead. I told her, also, that when you have a hammer, everything is a nail.... Judy > > In my first bout of chronic (> 6mo) sinusitis, 5 years ago, I went to > > two ENTs. Both recommended surgery, I then went to a periodontist who [quoted text clipped - 12 lines] > > i hope you have continued success. > After 5 sinus surgeries, complicated by a pseudomonas osteomyelitis > from the third "big" one--done by a "world expert" who never would see [quoted text clipped - 9 lines] > I told her, also, that when you have a hammer, everything is a > nail.... Are you referring to the c. pneumoniae or mycoplasma protocol? Do you have any citations I could share with my doctor about this regimen? Biaxin works for me, but my stomach can't tolerate it. Zithromax doesn't help me at any dose. Susan Susan, there are several references: Cervin's first article came out in 2001, and I don't have the immediate reference, but can get it, it involved a one year trial of failed surgical patients with either low dose erythromycin, biaxin, or a European macrolide--roxithromycin. The dose for erythromycin is 250 mg twice a day, or biaxin 250 mg daily. More recently: Otolaryngology Clinics North American, 2005, Dec; 38 (6): 1339-50, " Anit-inflammatory effects of macrolide antibiotics in the treatment of chronic rhinosinusitis", Cerivn, A, Wallwork, B Current Allery Asthma Rep, 2005 Nov; 5 (6); 491-1, "Treatment of Chronic Rhinosinusitiswith low-dose, long-term macrolide antibiotics, an evolving paradigm.", Hatipoglu,U, Rubinstein, I. Laryngoscope, 2006 Feb, 116 (2): 189-93, " A double-blind, randomized, placebo-controlled trial of macrolide in the treatment of chronic rhinosinusitis." , Wallwork, B, Coman, Mackay-Sim, Cervin I have a pile of articles, there was one in Chest, from the American Thoracic Society a few years ago. My ENT who now has utilized low dose macrolides successfully in a subset of patients, tells me how he goes to major meetings, talks to the "super-stars", and none of them are aware of these articles. He feels like medical management just isn't a priority for them. Surgery is. Judy > x-no-archive: yes > [quoted text clipped - 18 lines] > > Susan > Susan, there are several references: > Cervin's first article came out in 2001, and I don't have the [quoted text clipped - 14 lines] > I have a pile of articles, there was one in Chest, from the American > Thoracic Society a few years ago. Judy, many thanks for the citations. I'll definitely discuss my my PCP who's also my infectious diseases specialist. Susan Susan, I just found a summary article in Chest that can be accessed for free: it has all the citations: http://www.chestjournal.org/cgi/content/full/125/2_suppl/52S It has done wonders for both myself and my older daughter. Judy > x-no-archive: yes > [quoted text clipped - 21 lines] > > Susan > Susan, > I just found a summary article in Chest that can be accessed for > free: it has all the citations: > http://www.chestjournal.org/cgi/content/full/125/2_suppl/52S > It has done wonders for both myself and my older daughter. Thanks again! It's so helpful when folks have good citations to share, I really appreciate it. Susan Susan, no problem. I agree, I like to get the reference, not just individual stories--although they can be invaluable. In medicine, we're into "evidence-based" medicine: find the answers in the literature, only often the studies aren't done, the criteria are all wrong, the drug companies fund/suppress the data--so good studies and articles are great when you can get them. Thank you for all your good advice. Judy > x-no-archive: yes > [quoted text clipped - 8 lines] > > Susan On 6/7/06 5:50 AM, in article 1149684644.126293.253950@i39g2000cwa.googlegroups.com, "judy.n" > Susan, > I just found a summary article in Chest that can be accessed for [quoted text clipped - 27 lines] >> >> Susan Yes, the article is correct, the Macrolides do increase mucociliary clearance ( cilia movement) and that may be the key to its success. Irrespective of the bug, if you increase the rate of the cilia movement, they move the stuff out. Still, don't forget the hot tea and lemon, they help cilia too. >Yes, the article is correct, the Macrolides do increase mucociliary >clearance ( cilia movement) and that may be the key to its success. >Irrespective of the bug, if you increase the rate of the cilia movement, >they move the stuff out. Still, don't forget the hot tea and lemon, they >help cilia too. Dr. Grossan- In your experience, are the cilia ever a "lost cause?" In other words, are there patients--perhaps like myself (42yo, 4x surgery, chronic infections since early childhood)--in whom the cilia are either so scarred over, or have simply "burned out" that you never see them regain appropriate motility? If so, is there a particular course of treatment that you recommend they try? I've been using the irrigator for quite some time now--of late, adding grapefruit seed extract and a dozen drops of the 35% H2O2 to the 1L of saline solution. Also--I saw your comments about prophylactic measures for fliers (http://tinyurl.com/hz8qp). Thank you. I'm wondering whether you think Bactroban (which I already *have*) would be a reasonable substitute for your Breathe-easeXL Nasal Moisturizing Gel, and--if not, why not. I'm about a month away from flying to Europe ... and more than a little concerned. Are there any additional prophylactic measures that you think I might want to consider/discuss with Dr. Davidson next week? I'm going to Europe to be evaluated for some pretty serious eye issues. The last thing I (anybody) needs is to be sick, too. TIA, Neil On 6/8/06 9:38 AM, in article q0kg82l15puvhb7p9c5cg3ep4o3hpd40sd@4ax.com, > I'm wondering whether you think Bactroban (which I already *have*) > would be a reasonable substitute for your Breathe-easeXL Nasal > Moisturizing Gel, and--if not, why not. Bactroban is an excellent product. As a matter of fact, it was never FDA certified for intra nasal use, and I was the one who promoted it widely. If you have a full blown infection, esp Methicillin resistant staph, Bactroban is definitely superior to Breathe.ease XL Nasal Gel. For "ordinary " nasal problems and esp as an important moisturizer, Breathe.ease XL Nasal Gel is best, and besides, it is OTC whereas Bactroban is Rx. I believe they still have a package insert - not for intranasal use. They do have a special nasal Bactroban but it is quite expensive. The Generic one is fine. On Canada drugs, bactroban is OTC and runs about 30$ Judy > On 6/8/06 9:38 AM, in article q0kg82l15puvhb7p9c5cg3ep4o3hpd40sd@4ax.com, > [quoted text clipped - 10 lines] > still have a package insert - not for intranasal use. They do have a special > nasal Bactroban but it is quite expensive. The Generic one is fine. >On 6/8/06 9:38 AM, in article q0kg82l15puvhb7p9c5cg3ep4o3hpd40sd@4ax.com, > [quoted text clipped - 10 lines] >still have a package insert - not for intranasal use. They do have a special >nasal Bactroban but it is quite expensive. The Generic one is fine. Hmm. So ... if I *have* a tube of Bactroban on hand, and will be flying, but do *not* currently have a sinus infection ... rather, am looking for prophylactic measures to reduce the chance of acquiring something in-flight ... it sounds like using the Bactroban during the flight is a good thing. I don't use it regularly, so I'm not too concerned about acquiring resistance. I think I'll buy some Breathe.ease XL ... just in case. I'm quite certain that I'll wind up in rather arid hotel rooms along the way. Thanks! > I think I'll buy some Breathe.ease XL ... just in case. I'm quite > certain that I'll wind up in rather arid hotel rooms along the way. You might want to compare the price to drugstore no name brand saline gel; much better pricing, very good moisturizing, IME. Susan >x-no-archive: yes > [quoted text clipped - 3 lines] >You might want to compare the price to drugstore no name brand saline >gel; much better pricing, very good moisturizing, IME. Hadn't even heard of that one. Just saw it online, though. Sounds like a great recommendation to me. Thanks! >>x-no-archive: yes >> [quoted text clipped - 8 lines] > > Thanks! You're welcome. Frugal Susan :-) On 6/9/06 8:45 AM, in article 8r5j82116usfupio1mn8eablqnhdgj3kkv@4ax.com, > I'll wind up in rather arid hotel rooms along the way. Hang wet towels around the bed and keep the bathtub filled with water. One arid place I was at, the entire bathtub was bone dry next day, as well as the towels. Note: You can be in snow country and it can be snowing, but if you are at altitude, your nose can get dry dry and bleed. On 6/8/06 9:38 AM, in article q0kg82l15puvhb7p9c5cg3ep4o3hpd40sd@4ax.com, > In your experience, are the cilia ever a "lost cause?" In other > words, are there patients--perhaps like myself (42yo, 4x surgery, > chronic infections since early childhood)--in whom the cilia are > either so scarred over, or have simply "burned out" that you never see > them regain appropriate motility? There is a simple test you can do called the Saccharin test of cilia mobility. You time how long it takes for a particle of saccharin to travel over the nasal membranes by cilia and then be tasted when it is swallowed. Normal time is 5-10 minutes. If takes 30 minutes or more, it indicates severe lack of ciia function. In such cses, use of pulsatile irrigatiom as a substitute for non - cilia function can be very helpful used twice a day. >On 6/8/06 9:38 AM, in article q0kg82l15puvhb7p9c5cg3ep4o3hpd40sd@4ax.com, > [quoted text clipped - 3 lines] >> either so scarred over, or have simply "burned out" that you never see >> them regain appropriate motility? >There is a simple test you can do called the Saccharin test of cilia >mobility. You time how long it takes for a particle of saccharin to travel [quoted text clipped - 3 lines] >In such cses, use of pulsatile irrigatiom as a substitute for non - cilia >function can be very helpful used twice a day. Thanks much, Doc. I'll run this by Dr. Davidson, though ... other than the irrigation (which I already do), it sounds as though a diagnosis of immotile cilia doesn't really drive any course of treatment. On 6/9/06 8:48 AM, in article tv5j82dgdflkh2p37qri9n1qo8iri3c8b9@4ax.com, > I'll run this by Dr. Davidson, though ... other than the irrigation > (which I already do), it sounds as though a diagnosis of immotile > cilia doesn't really drive any course of treatment. De Davidson is the expert in this field. > Yes, the article is correct, the Macrolides do increase mucociliary > clearance ( cilia movement) and that may be the key to its success. > Irrespective of the bug, if you increase the rate of the cilia movement, > they move the stuff out. Still, don't forget the hot tea and lemon, they > help cilia too. Shouldn't doxycyline, which I take regularly, do the same thing, given its anti-inflammtory effects? Susan Susan, It hasn't been studied for respiratory effects (that I've seen yet), but it has been studied extensively in the dental literature. They use doxycycline 20 mg twice a day to control gum disease. At that dose, it has virtually no antibiotic effect, almost all anti-inflammatory effect--and it works. My ENT has recently discussed that he believes that doxycyline will join the macrolides in their effectiveness in reducing inflammation. (My daughter's dermatologist has spoken about it as well.) I can do a literature search, but I just don't think it's been studied. There has been interest in it recently as an older antibiotic with a lot of potential--it can reduce/prevent arthritis. I'll bet the answer is that it works, we just don't have the studies, that I know of. (Older generic drugs often aren't studied, as much research is funded by drug manufacturers.) Judy > x-no-archive: yes > [quoted text clipped - 8 lines] > > Susan > Susan, It hasn't been studied for respiratory effects (that I've seen > yet), but it has been studied extensively in the dental literature. > They use doxycycline 20 mg twice a day to control gum disease. At that > dose, it has virtually no antibiotic effect, almost all > anti-inflammatory effect--and it works. I was under the impression that it was used for it's effect against pathogens in the gums, for it's bacteriostatic effects, hence the name Periostat? I take double the typical adult dose, 200mg twice per day. >My ENT has recently discussed > that he believes that doxycyline will join the macrolides in their > effectiveness in reducing inflammation. Tell your ENT I've developed severe chronic sinusitis while taking 400mg per day for lengthy periods for years! (My daughter's dermatologist > has spoken about it as well.) I can do a literature search, but I just > don't think it's been studied. There has been interest in it recently > as an older antibiotic with a lot of potential--it can reduce/prevent > arthritis. Actually, a relative, Minocycline has produced good results for years in all sorts of arthritis. The famous study found that 40% of test subjects with various types of arthritis experienced improvement, with a significant number experiencing cures. TBDs are ubiquitous, and no good serological tests exist. And other bugs can produce arthritis, too. > I'll bet the answer is that it works, we just don't have the studies, > that I know of. (Older generic drugs often aren't studied, as much > research is funded by drug manufacturers.) I'd like to see a head to head for doxy and macrolides. Susan > I was under the impression that it was used for it's effect against > pathogens in the gums, for it's bacteriostatic effects, hence the name > Periostat? ITS, not IT'S!! Sheesh. Stoopid Susan Susan, I asked a dentist (my husband) and he tells me that the dental literature says it doesn't change the mouth flora at the low doses. I know there's extensive studies of the microflora in the periodontal pockets--I'm not sure if it changes it. My understanding was that at the dose of 40 mg a day, it's primarily the anti-inflammatory effect not the anti-microbial. Tetracyclines are bacteriostatic drugs (vs. bacteriocidal drugs): they stop bacteria from replicating, but don't wipe out the pre-existing bugs (which you obviously know already) So are macrolides, as far as their mechanism of action. The periostat was prohibitively expensive, but now there's a generic version. I've seen some nasty side-effects from minocycline: drug induced lupus, vertigo-- so I haven't felt comfortable with it for a while. Judy > x-no-archive: yes > [quoted text clipped - 7 lines] > > Stoopid Susan > Susan, > I asked a dentist (my husband) and he tells me that the dental [quoted text clipped - 3 lines] > the dose of 40 mg a day, it's primarily the anti-inflammatory effect > not the anti-microbial. Yes, I just looked it up; it's used in the low dose form to reduce matrix metalloproteinase. Since higher doses treat the infection that causes this to form, why don't they just use higher doses? Perhaps because there was no way to patent regular dose doxy for a new use. > Tetracyclines are bacteriostatic drugs (vs. bacteriocidal drugs): > they stop bacteria from replicating, but don't wipe out the [quoted text clipped - 3 lines] > I've seen some nasty side-effects from minocycline: drug induced > lupus, vertigo-- so I haven't felt comfortable with it for a while. The only side effect noted (purely anecdotally) by the folks I know who've used it was dizziness, which abated upon discontinuation. OTOH, I know of some folks who've gotten much more cognitive improvement from it than from other tetracyline drugs. I'd never heard of the lupus like reaction, though. Susan On 6/9/06 8:34 AM, in article 4etiodF1f85ofU1@individual.net, "Susan" <nevermind@nomail.com> wrote: > cognitive improvement from > it Cognitive improvement? What's that? Someone is taking 400 mg of tetracycline??? Whatever for? > Cognitive improvement? What's that? For me it's the difference between getting lost on the way home from the drugstore or not. Or knowing how to cook a meal or not being able to figure it out. > Someone is taking 400 mg of tetracycline??? Whatever for? Neuroborreliosis, as documented by serology, neurocognitive testing, clinical signs and symptoms as well as brain SPECT at Columbia U. I got very little effect from 200mg per day of doxy, and a very strong die off reaction from 400, which is what led to the rip roaring tinnitus that brought me to ast years ago, if you recall. Endotoxic reaction. Susan Susan, I asked him again about the rationale, and it's to reduce the matrix metalloproteinase without disturbing the normal mouth flora. At the usual therapeutic dose, the mouth flora became altered. I live in NE, and should be up on all the tick borne diseases, but what you described was neurological involvement of Lyme disease: stage 3--correct? For the tetracycline. It's such a controversy here on how to treat "chronic Lyme" as the literature says it doesn't respond to chronic antibiotics, and patients swear that it does. There's actually a law in Rhode Island that mandates insurance coverage of long-term IV antibiotics for chronic Lyme, passed by a state senator whose sister has symptoms attributed to Lyme disease. Most of the infectious disease physicians in the state feel that it's politics vs. science. Judy Judy > x-no-archive: yes > [quoted text clipped - 27 lines] > > Susan > Susan, I asked him again about the rationale, and it's to reduce the > matrix metalloproteinase without disturbing the normal mouth flora. At [quoted text clipped - 10 lines] > Most of the infectious disease physicians in the state feel that it's > politics vs. science. On both sides, sadly. It is politics over science. And insurance lobbies for companies who don't want to pay for lengthy treatment. The NIH chronic Lyme study was too badly designed and run to determine anything. Frankly, we can't even define Lyme disease, because we don't know how many various coinfections the original cases may have had that we've only learned about recently. There's both over diagnosis and underdiagnosis, overtreatment and overtreatment going on. Susan > There's both over diagnosis and underdiagnosis, overtreatment and > overtreatment going on. Er, that would be "... overtreatment and UNDERtreatment..." At least I can still spell "neurocognitive deficits." ;-D Susan > I live in NE, and should be up on all the tick borne diseases, but > what you described was neurological involvement of Lyme disease: stage > 3--correct? For the tetracycline. P.S. Incorrect. There are no stages, and plenty of folks develop disseminated disease rapidly. I have late, chronic Lyme, HGE and HME, that went undiagnosed for decades despite swollen arthritic knee, acute and then years of evanescent EM rashes and western blots with highly specific Bb bands on them. In one of the most endemic regions in the country. Susan On 6/9/06 8:26 AM, in article 1149866796.540924.267080@i40g2000cwc.googlegroups.com, "judy.n" > I've seen some nasty side-effects from minocycline: drug induced > lupus, vertigo-- so I haven't felt comfortable with it for a while. > Judy I was one of the original investigators on minocycline. I got lots of dizzyness and recommended that it not be put on the market. Meanwhile they have sold millions of it. Shows that for any drug you can always find someone who found something wrong with it. > I agree with Susan. That's good to hear. I'm just curious how you > thought to go to a tooth guy and a blood guy for a sinus problem? The periodontist when I started WaterPik irrigation of my bridge and found water coming out of my nose; the Hematologist as a second opinion for chronic anemia. Neil, my internist had just run total immunoglobulins when I was concerned about how sick I was, it was my allergist--who really thinks things through--who ran the IgG subsets when I got pneumonia. I'm low on the IgG1 and IgG3 subset, and he didn't feel I needed IV immunoglobulins. It's good to here that it helped you. It's also good to hear that you reasoned this out yourself, and didn't accept the knee-jerk reactions of sinusitis=surgery. Judy > > I agree with Susan. That's good to hear. I'm just curious how you > > thought to go to a tooth guy and a blood guy for a sinus problem? > > The periodontist when I started WaterPik irrigation of my bridge and found > water coming out of my nose; the Hematologist as a second opinion for > chronic >In my first bout of chronic (> 6mo) sinusitis, 5 years ago, I went to two >ENTs. Both recommended surgery, I then went to a periodontist who quickly [quoted text clipped - 7 lines] > >Just anecdotal, I know, but . . . I agree with the other posters. I sense that quite a few locals on this NG aren't entirely satisfied with the sort of allopathic "treat the symptoms" approach ... only. I'm not. Something causes most things. Maybe something known. Maybe something conventionally accepted. Maybe not. The closer I can get, though, to attacking the underlying issue, the happier I am. I "tried on" a new internal medicine doc months ago, telling her about this whole "complex of issues" that I'd routinely get. I asked her whether she could conceive of a nexus--some common medical issue that might explain all or most of them. She said, "If you come to me with a headache, I'm going to give you an aspirin," then proceeded to write me referrals to a half-dozen specialists all of whom would appropriately represent the "hammer-nail" analogy of Susan's. That was the last time I saw her. I've found much more inquisitive, much more creative folk since ... and my health has improved as a result. Hope yours does, too! |
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