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Medical Forum / Diseases and Disorders / Sinusitis / June 2007allergy shots & mold
i wanted to pick up on rick's thread of success with allergy shots. it's been my prior understanding that allergy shots are not as effective for (against?) molds as they are for other allergens. has that changed at all? i had shots for at least 3 years back in the mid to late 90s & never noticed much of an improvement. still trying, ellen > i wanted to pick up on rick's thread of success with allergy shots. > it's been my prior understanding that allergy shots are not as > effective for (against?) molds as they are for other allergens. has > that changed at all? i had shots for at least 3 years back in the mid > to late 90s & never noticed much of an improvement. Not so, IME. My superpotent allergy shots (3 mos. desensitization schedule) dropped all my allergies, including mold, like a rock. I still haven't tested the invisible white mold in my bathroom that my sinuses react to in order to get it added to my allergy shot, but I can go into incredibly damp and moldy areas now without the awful headache, congestion, eyes and throat burning that I used to get. Susan >i wanted to pick up on rick's thread of success with allergy shots. > it's been my prior understanding that allergy shots are not as [quoted text clipped - 4 lines] > still trying, > ellen I had my most recent round of full allergy testing about three years ago and several of the positive tests were for various molds. About 18 months ago I was informed that since my last round of testing there were now additional new mold tests available so I had these tests done also. I had severe reactions to all the newer mold tests. These new results meant my needing to take a second injection but the results of the additional shot have been very helpful. Knocking on wood - this has been my best year in many in regards to my sinusitis not causing constant problems. AW > >i wanted to pick up on rick's thread of success with allergy shots. > > it's been my prior understanding that allergy shots are not as [quoted text clipped - 15 lines] > Knocking on wood - this has been my best year in many in regards to my > sinusitis not causing constant problems. AW how outstanding for you both to be able to get that kind of relief. & after i posted yesterday, i had some unfortunate mold exposure that caused the same type of symptoms that susan detailed. caused quite a horrific day, leading me to speculate that some higher power is trying to tell me something or kill me off. but here's the next question - does prior treatment failure automatically preclude further treatment of this type? ellen > how outstanding for you both to be able to get that kind of relief. & > after i posted yesterday, i had some unfortunate mold exposure that [quoted text clipped - 3 lines] > but here's the next question - does prior treatment failure > automatically preclude further treatment of this type? Nope. It just precludes going back to that allergist. Call around and see if you can find one who goes against the pack and desensitizes on a 3 month schedule. Most allergists give shots that are just too weak to work. Susan Ellen, There's a national shortage of allergists, and many ENT's are getting into the allergy business. I've noticed that most ENT's do it very "cookbook": they have a set of prick tests and I have no idea how they mix their serum and how they titrate up to maintenance. I was at an ENT's office that did allergy shots, and they weren't having the patients wait after injections (for systemic reactions--I realize Susan gives herself the injection at home, but I once had patient go into respiratory arrest at the health center after a shot, so I'm cautious), and were buring a scented candle near the injection site. Talk about missing the point. So, I stick with my allergist, who is board certified, and my older allergist who is "grandfathered in" but not board certified--but an amazing physician. I've had significant relief with the shots. Periodically I try to go off, but don't do well. It's worth getting retested every few years and adjusting the serum. In Europe they do sublingual immunotherapy that is reportedly very effective, it's yet to become a standard here. I'm sure some ENT's do a good job of immunotherapy, I just haven't met them yet.... I live in the land of mold: near the water, high humidity, and our older bathroom leaked this weekend: so I had a fit until it was fixed: I don't need more mold in this house. Judy > x-no-archive: yes > [quoted text clipped - 13 lines] > > Susan > Ellen, > There's a national shortage of allergists, and many ENT's are [quoted text clipped - 7 lines] > so I'm cautious), and were buring a scented candle near the injection > site. Talk about missing the point. I had to have my first series in the allergist's office. That said, he's in a practice that used to include his father. Totals several decades of experience without losing a patient yet. OTOH, I sat for half an hour every time, getting sicker and asthmatic in the office of the local allergist, and developed chronic acute sinusitis thanks to her. > So, I stick with my allergist, who is board certified, and my older > allergist who is "grandfathered in" but not board certified--but an > amazing physician. I've had significant relief with the shots. > Periodically I try to go off, but don't do well. > It's worth getting retested every few years and adjusting the serum. My allergist retests me every six months, and rejiggers my serum accordingly. Susan >> >i wanted to pick up on rick's thread of success with allergy shots. >> > it's been my prior understanding that allergy shots are not as [quoted text clipped - 28 lines] > automatically preclude further treatment of this type? > ellen My testing was done by my ENT who had additional training to also specialize in allergy testing. He has severe allergies himself. I have forgotten the exact professional degree certification name but if I remember correctly he told me that only a rather small number (thousands) of ENTs were certified in the same manner to do allergy testing. This is my third round of allergy testing since my youth and has been the best at long term reduction of my allergy and sinusitis symptoms. I attribute my improvement to daily saline irrigation routine, better drug treatments and better allergy and mold desensitization. AW >> >i wanted to pick up on rick's thread of success with allergy shots. >> > it's been my prior understanding that allergy shots are not as [quoted text clipped - 24 lines] >automatically preclude further treatment of this type? >ellen Ellen, As others have said, no, go get tested maybe by another allergist. In my case, I got tested by an allergist, but I realized I wouldn't be able to commit to getting shots by him (too far from where I live), so my ENT suggested the one I go to now. So all I did was bring in my test results and he said since I was a number "4" on so many molds, I would have two shots, twice a week. His office is quite busy - in fact, I've come to call it "the zoo" due to the amount of people and hyper bored kids in the waiting room. Yes, I would probably say here in Houston there's a shortage of allergists; fortunately, mine is way out here in the suburbs. One thing I wouldn't recommend going to mine about would be for sinus infections. He's proven to me on different occasions that his experience with giving out the correct dosages of antibiotics and sinus infections in general is lacking. But that's what I have my ENT (and if need be, my PCP) for. Fortunately, I've only had one or two episodes in the last year or so that would be termed infections. It used to be I would know that when I started feeling not so good, I would get an infection. Now, I just stick with occasional saline irrigation, Nasonex, and Sudafed (the pseudoephedrine kind - or even rx generic max dose horse pill). And I'm only sick a day or two, not the former chronic condition that plagued me for oh, say the last 10 years or so. I do find it funny that you say a *higher power* is trying to kill you off, as I think of mold now as the lowest power there is. I think it's worth you trying again to fight back against it again. > >> "ellen" <epdps...@gmail.com> wrote in message > [quoted text clipped - 59 lines] > off, as I think of mold now as the lowest power there is. I think > it's worth you trying again to fight back against it again. thanks to all for the comprehensive responses. i do plan on pursuing this. i had just dismissed allergy shots as a treatment option because of my past experience & earlier (mis?)understanding regarding their effectiveness against molds. glad i asked about it & feel fortunate to be able to have this dialogue with knowledgeable people. it's helped me tremendously thus far. & rick, you are absolutely right about the 'lower power.' it just felt more sarcastically satisfying to attribute my woes to something/ one somewhat larger. ellen >> >> "ellen" <epdps...@gmail.com> wrote in message >> [quoted text clipped - 72 lines] > >ellen Ellen, I think once you find that you get the upper hand (or nostril!) in this, you'll find it much more satisfying to see that you're defeating it, or at least getting the best of it most days. If you go to the allergist, keep us posted, ok? Or feel free to contact me privately anytime at rick.burt@spamgmail.com. Just remove the "spam". Rick > >> >> "ellen" <epdps...@gmail.com> wrote in message > [quoted text clipped - 82 lines] > > Rick thanks rick, i'll definitely keep you & everyone posted; i'm sure i'll have more questions. & i'm trying to not just toss in the dust rag again. i can't recall the specific credentials of the folks that did my shots; just remember that everyone that went there disliked the ent. but i do remember that they weren't increasing my doses very much, i thought it was because i was having continuous sinus problems. never had a bad reaction to any of the shots. & i'm not at all familiar with highly potent 3 month approach. i do know, however, that burning a scented candle near the injection site is a bad sign. i will not go into a diatribe on incompetency & stupidity. i'm happy so many of you are being helped by the desensitization & i'd love to be part your group. ellen > i'm happy so many of you are being helped by the desensitization & i'd > love to be part your group. Ellen, call around and ask the question about 3 mos. time and don't waste your time on anyone who says they go longer than 6 mos. BTW, that doesn't mean it's complete; I still get increasingly stronger serum each time I get a new vial, and depending upon my skin test results, but the major symptoms were gone in three months, improving with my first shot. Susan > x-no-archive: yes > [quoted text clipped - 8 lines] > > Susan susan, how did you come across this particular approach? you've had an impressive response. i'm so used to having increased symptoms with just about anything that i try that i'm a bit scared of .... oh, i guess most things..... do the hormonal fluctuations during the perimenopausal transition complicate the picture? i've read that chronic conditions are frequently exacerbated & that appears to be the case for me. so is my immune system wackier than usual? & will treatment response then be more variable? please tell me that there is wisdom gained by having to learn so much, work so hard to get to a place that luckier individuals just start out from ( i can guarantee you that my husband has never had to research things like 'biometeorology'). i promise to be less crabby the healthier i get. ellen > susan, > how did you come across this particular approach? you've had an > impressive response. i'm so used to having increased symptoms with > just about anything that i try that i'm a bit scared of .... oh, i > guess most things..... Hey, I did, too, but this is different. It's based upon how reactive you are upon testing. I didn't realize how fabulous my original allergist was til I went to a new fangled one who made me very ill with weak shots that weren't desensitizing me even after a year; she made all my allergies come roaring back. I drive an hour a couple of times a year to be retested by my wonderful allergist, who saved me from all that within 12 weeks, once more. > do the hormonal fluctuations during the perimenopausal transition > complicate the picture? i've read that chronic conditions are > frequently exacerbated & that appears to be the case for me. so is my > immune system wackier than usual? & will treatment response then be > more variable? Yes, peri screws with your steroids. All my stuff got worse, too. > please tell me that there is wisdom gained by having to learn so much, > work so hard to get to a place that luckier individuals just start out > from ( i can guarantee you that my husband has never had to research > things like 'biometeorology'). i promise to be less crabby the > healthier i get. You're not at all crabby, and I get it. I've been medically screwed up for years. I am currently carrying a diagnosis of Cushing's syndrome (likely disease, given my high midnight cortisol) despite the fact that I don't look at all Cushingoid. I was ignored by doctors for a year, recently, during which I gradually moved toward and experienced an Addisonian crisis. Have you had your cortisol checked? All of my chronic illnesses have been either caused or made worse by this undiagnosed condition and the maltreatment I'd received for decades. Susan > x-no-archive: yes > [quoted text clipped - 39 lines] > > Susan it's always a relief to commiserate. have never had my cortisol checked - i suspect that i've had elevated levels for prolonged periods as well as out of whack timing. no one has ever cared about it except for a naturopath that i went to who was thorough but scary. i'm going to see my ob/gyn soon & i've made an appointment with yet another new gp ($$$$) so i'll add this to the big list of things to talk about. ellen >x-no-archive: yes > [quoted text clipped - 8 lines] > >Susan Susan, I'm curious why you say "don't waste your time on anyone who says they go longer than 6 mos". I felt like I was improving after the first week or two of shots as well, but as I look back on it, it was somewhere between the 3 - 6 month period where I felt comfortable with the treatment. I think sometimes the allergists don't *load up* on people to begin with, due to possible adverse reactions. Although I've never had a negative reaction from an injection, I know some others do even with a weak dose. Also, I just thought of this, the nurse always asks if I've taken an antihistamine before. I've only forgotten once, and they gave me liquid Zyrtec and then I come back 30 minutes later. One downside about this year is that my health insurance benefits changed to where I've had to meet a deductible and pay for the serum, whereas last year I didn't have any out of pocket expenses. I'm not too happy about that, but at least the vials I bought should last the rest of the year. Rick > Susan, > [quoted text clipped - 6 lines] > I've never had a negative reaction from an injection, I know some > others do even with a weak dose. My shots are still every two weeks even after a couple of years. It's just that the first 3 months did the bulk of desensitization, compared to the slower schedule, which actually made me worse. I'm not saying not to continue, I'm saying to get rapid relief. More people die, undoubtedly, from severe allergies than from treatment very year. Susan >x-no-archive: yes > [quoted text clipped - 13 lines] >to the slower schedule, which actually made me worse. >I'm not saying not to continue, I'm saying to get rapid relief. Maybe the issue is that we both speak from experience, knowing stronger dosages help more than the weaker-but-increasing-in-strength shots. But for someone else, who may not have had the experience, high dosages at first might be problematic. It would seem to be along the lines of overdosing, which is maybe why they don't. >More people die, undoubtedly, from severe allergies than from treatment >very year. > >Susan Death by allergies? I never thought of that. I guess because mine aren't life threatening, but are a quality of life issue as well as a huge pain in the butt (which is _not_ where the shot goes, shot newbies. ;-)) I mean, after all, they're giving shots to people who are known to have some sensitivity problems to begin with, otherwise they wouldn't be getting shots to get rid of them. That right there tells me that allergists are following a prudent course by starting weak and gradually increasing dosage. At least it worked for me. But, Susan, you bring up a good point. For those who don't have experience with immunology, it's your right as a patient to know what your course of treatment will be, the strength of the dosage, etc. There is no harm in asking Mr. or Ms. Allergist if your treatment can be accelerated; a good doctor should work with you and be straight on the pros and cons of all of this. And if you don't like the answers, get not only a second opinion, get a second course of treatment. Rick >> >> >> "ellen" <epdps...@gmail.com> wrote in message >> [quoted text clipped - 102 lines] > >ellen Ellen, One anecdote of mine about seeing/not seeing an allergist. ENT #1, who operated on my deviated septum in 1995 (which didn't help my problem - in fact, I found on CT scan 10 years later it was still deviated) said I needed surgery a year and a half ago on my right ethmoid sinuses. When asked by me how about if I saw an allergist, he said "it would take about 2 years at least for the treatment to start working". Actually, he may have said 5, I don't recall. In any case, I got a second opinion at ENT #2, whose treatment of me was a godsend, because through his treatment and further CT scan showed I DIDN't need surgery. Plus he said I SHOULD go for allergy testing. And he referred me to my allergist. Believe me, I still had doubts like you did about them (I had testing and shots as a kid), but I said I'm going to make the commitment and stick with it. Now I'm on maintenance once a month, and I don't see how they could make the shot any more powerful. My muscles in my arms are both pretty heavy by the time I leave there (they make me wait 20 minutes for reactions.) I've only missed one day of work this year compared to being almost constantly sick (but still going to work) and on antibiotics for the 2 previous years. I work out 3 times a week, for about 2 hours a whack at the gym. I'd force myself to go most of the time when I wasn't feeling well, because I figured I'd be even worse if I didn't. I'm still not *perfect* in my behavior. I realized the other day when I dusted out my old computer armoire that I should have worn a mask while doing it. So what happened? Dust in my lungs, and dry hacking for the next 3 days. I should know better but I get lazy. I don't do what some do and irrigate every day (I used to do it twice a day until I realized it didn't help me - seems it helps those who are all clogged up - I hardly ever am). I don't have any dust mite barriers, and don't do a lot of other vigorous cleaning. I'm more like a lady I was talking to in the allergist's office who decided that since she traveled a lot, above and beyond cleaning of her own home wasn't worth the time and energy, so she decided to not do anything extraordinary, and get the shots like I did. And that seems to work for her also. Sounds good to me at 52. Rick > >> >> >> "ellen" <epdps...@gmail.com> wrote in message > [quoted text clipped - 147 lines] > > Rick rick, thanks for sharing that. it's so great that you are doing so much better - to be able to go from being constantly sick to working out on a regular schedule must feel amazing. one of the things that i've learned from all of you is to really educate oneself, pursue treatment options, & find competent medical help (this one is the hardest between cost & difficulty in locating). i'm sure that there is a place between extraordinary & lazy, but tonight i'm too tired & sick to even contemplate it. but someday i hope to see you there. ellen Ellen, To second Rick: you can only do so much. I use the dust mite barriers, HEPA filters--but I also go on house cleaning frenzies without a mask, or I garden--which seems to do me in--there must be mold I'm pulling with all the pollen. And, my daughter has a horse, and I go and check on him, although I haven't ridden him for about a year. And, I have a dog. My former allergist tested me, and I was weakly positive for dog: and my dog at the time (this was a long time ago) was getting chemo at Tufts for bladder cancer, and he made some comment about how she'd be dead soon, good. Didn't endear him to me. There have been studies about cat dander: it's so sticky that you find it in households that have never had a cat. I used to work at a hospital, and my office had major mold issues, and my officemate had two cats, and I was sick all the time, and ended up with the disastrous sinus surgery of 2000--and all I probably had to do was remove myself from the allergens, hospital bugs and sick residents and medical students--they were always sick because they worked so hard with ill people, and then I taught them. My subsequent post-op infection grew a multi-resistant pseudomonas-- resistant to drugs I've never taken, I'm sure I picked it up in the hospital. So, we do what we can. Judy > > >> >> >> "ellen" <epdps...@gmail.com> wrote in message > [quoted text clipped - 163 lines] > > ellen > Ellen, > To second Rick: you can only do so much. I use the dust mite [quoted text clipped - 180 lines] > > read more ? Ah yes gardening, that is how I majorly screwed myself up. Give me a good factory with where charcoal dust is used as a lubricant hot forming titanium and my snot is black but and I am fine. I go our and make with the fish meal and the mulch during a drought when it was dry enough for the mulch to launch clouds of dust when ever it was touched and get gunk city. Now it looks like I am either robbing the roses or preforming surgery when I garden. >Ellen, > To second Rick: you can only do so much. I use the dust mite >barriers, HEPA filters--but I also go on house cleaning frenzies >without a mask, or I garden--which seems to do me in--there must be >mold I'm pulling with all the pollen. Judy, About gardening, I recall when I first had allergy shots - when I was 10 to about 12. The doctor said something about "night mold" being a problem with me. On times when I don't go to the gym to work out, I often walk in my suburban neighborhood at night, and wonder if I'm still breathing in "night mold" that comes from people's gardens and trees. And it's been so wet here in the past few weeks. I don't know, but I haven't felt any ill effects that I can think of. Rick >> >> >> >> "ellen" <epdps...@gmail.com> wrote in message >> [quoted text clipped - 163 lines] > >ellen Ellen, Just don't give up, and whatever you do, don't get mad at yourself, because unless you're at home snorting lines of dust or mainlining mold viruses, you didn't cause this to happen to yourself. You're right about finding the right doc. I don't care how great a surgeon is or thinks he or she is - an unnecessary surgery is just that - one that should not have occurred. A caring doctor with a good down-to-earth personality who's willing to admit he or she doesn't know everything, but will try his darndest in your case to help you find solutions is wonderful. If you go to a PCP who you trust, and want a referral, ask for _two_ referrals. That's how I found out about good ENT #2. After I got recommended for surgery by ENT #1, I called my PCP's office and they gave me good ENT #2's name. Fortunately, both docs practiced in not only the same building, but on the same floor. It may seem like a lost cause, that you're not getting anywhere, but you're actually getting all the crap out of the way, which unfortunately you may be enduring more than your share. In a similar way,if you get Discovery Health Channel, and have ever watched "Mystery Diagnosis", you really see how awful some of these clueless doctors can be. It may sound strange, but watching that show has helped me change my thinking about how to find answers to my own health questions. If you haven't seen it before, watch it. I love trying to guess what the person's illness is. I'm getting pretty good at it, too. I diagnosed lupus tonight...lol.. Rick > Ellen, > [quoted text clipped - 27 lines] > > Rick rick, you have outstanding timing. giving up is exactly what i've felt like doing the last couple of days. so i really appreciate the support & advice, as well as the descriptive "snorting lines of dust or mainlining mold viruses.' i just loved that & i promise not to try it when i'm in one of my masochistic 'to hell with all of it' moods. don't think i'm up to watching mystery diagnosis just yet, but i could see how it would help to reframe the whole health/illness puzzle. the continual peeling back has got me tired out right now. for every new connection, there seems to be a disappointment or a further mystery. i've mentioned something similar to judy - it's so hard sometimes to find that place of hope & acceptance instead of resignation. did see the doc yesterday. the azithromycin hasn't seemed to change the whole picture too much, so i'm now off that. ampho b as indicated elsewhere caused more problems than i started with. he didn't think that the allergy shots would help. it does seem increasingly clear how my hormonal fluctuations complicate/worsen the sinusitis. guess right now i'm so focused on trying to figure out how to manage all my crazy reactions to these fluctuations that i'm incapable of adding another thing. but i love all you guys & that's not just the hormones talking. thanks, ellen > rick, you have outstanding timing. giving up is exactly what i've > felt like doing the last couple of days. so i really appreciate the [quoted text clipped - 19 lines] > > but i love all you guys & that's not just the hormones talking. Ellen, what are your other symptoms and your health overall like? I'm struck by how many other Cushing's patients have chronic and acute sinus infections. Hormones have everything to do with it, especially excess of immunosuppressive ones. Susan > x-no-archive: yes > [quoted text clipped - 29 lines] > > Susan susan, too vague & numerous to detail. don't quite remember the signs of cushing's, but i do recall that i didn't have many of the typical manifestations. so i present with general fatigue & inflammatory symptoms - like the rhinitis/sinusitis. some unusual on & off joint symptoms. & a bunch of other junk, like dysthymia, ibs, skin conditions, etc. i do know that i've always had something off re: hormones in general - had nasty acne as a young adult, some chin hair growth that began at that same time, i'm still at about that weight (which is pretty thin - then it was muscle). back then i was told excess androgens - no big deal. sometime in the last 5 years or so i asked an ob/gyn about hormonal imbalances & other endocrine issues & i recall she said something like - "& if we find something, then what are we supposed to do?" well hell if i know. i've been reading your posts about what's going on with you right now. i wish i could be of some help with it. but i am thinking of you & wishing you the best as you navigate through all this difficult stuff. ellen > susan, > > too vague & numerous to detail. don't quite remember the signs of > cushing's, but i do recall that i didn't have many of the typical > manifestations. Me neither, most of the time. so i present with general fatigue & inflammatory > symptoms - like the rhinitis/sinusitis. some unusual on & off joint > symptoms. & a bunch of other junk, like dysthymia, ibs, skin [quoted text clipped - 6 lines] > recall she said something like - "& if we find something, then what > are we supposed to do?" well hell if i know. Those *are* the typical manifestations!! > i've been reading your posts about what's going on with you right > now. i wish i could be of some help with it. but i am thinking of > you & wishing you the best as you navigate through all this difficult > stuff. You need to visit www.cushings-help.com and check out your won symptoms! You sound like a classic Cushing's patient, and it would explain everything. Getting a doctor to competently diagnose it is a tall order, though. I live in NY metro and had to fly to Los Angeles. Susan > x-no-archive: yes > [quoted text clipped - 34 lines] > > Susan thanks, susan, for the info & link. i'm at the frustration stage right now & don't seem capable of analysis or other useful congnitive functions. i'll bring this up at the ob/gyn visit as well as at the appointment with the new pcp. feels like everything & nothing. ok, not exactly nothing, though that's been the message after years of medical wandering. & all the somethings seem like fragments. best, ellen > thanks, susan, for the info & link. i'm at the frustration stage > right now & don't seem capable of analysis or other useful congnitive [quoted text clipped - 4 lines] > that's been the message after years of medical wandering. & all the > somethings seem like fragments. Ellen, if you go to the site I gave you, register and read other people's bios, you'll find your story and mine. Susan > x-no-archive: yes > [quoted text clipped - 9 lines] > Ellen, if you go to the site I gave you, register and read other > people's bios, you'll find your story and mine. Ellen; Have your blanky de blank ENT give you some SPORANOX. I know that they like to start with Nystatin and go through diflucian, but nothing prescribed worked until they added the Sporaxox (itraconazole), and then it takes a while. A mycologist that I slightly know at Duke found that certain fungi are gyneotopic, fungi specialize in females, some in males, and hormone fluctuations cause them to release different factors. I don't clearly remember the details, but I think that there was a positive feed back loop between the fungus and the women infected that drove harmonal imbalance. > Ellen; > Have your blanky de blank ENT give you some SPORANOX. I know that [quoted text clipped - 7 lines] > loop between the fungus and the women infected that drove harmonal > imbalance. Anti fungals often cause adrenal failure or suppression, and if Ellen has what it sounds like she has, that's a very dangerous idea. Ketoconazole in particular, for example, is so reliably adrenal suppressive that it's used to reverse hypercortisolemia. Itraconazole and fluconazole are implicated in case reports. What you just suggested, given Ellen's history and symptoms is life threatening, potentially. Susan > x-no-archive: yes > [quoted text clipped - 22 lines] > > Susan Susan: SWTF? Cushing's IS hypercortisolism. It is defined as excess cortisol of any editolgy. E. > > x-no-archive: yes > [quoted text clipped - 31 lines] > > E. Sorry i did not intend to be flip, I know that you are sick and that you are intelligent and committed to not being shunted aside. I admire you pluck, but I have never seen anyone have a good reaction to Ampho-terrible, or be more than a little tired when they first take Sproanox, and then gradually they feel a whole lot better. Ellen and her doctor need to consider it if her liver can handle it, and the only people that I think really have a problem with that have some type of liver disease already. The annoying thing about this drug is that it takes about a month to really start to work, it does not kill the fungus, It is not a cure. It just stops it from growing and when you stop taking it, the stuff comes back. People get much better, get to feeling like the goo is gone, Life is good and they go off of it and in 3 to 6 months it comes back, meanwhile your doctor moved and the new guy is terrified of it. etc, etc, etc. > Sorry i did not intend to be flip, I know that you are sick and that > you are intelligent and [quoted text clipped - 6 lines] > think really have a problem with that have some type of liver disease > already. Elizabeth, you are not qualified to prescribe, nor do you understand the role that endocrine problems play in chronic infections. Sinusitis is very common in Cushing's, which Ellen may be describing in her case, and antifungals administered could cause a fatal adrenal shutdown. > The annoying thing about this drug is that it takes about a month to > really start to work, it does not kill the fungus, It is not a cure. > It just stops it from growing and when you stop taking it, the stuff > comes back. So maybe the fungal growth is a symptom, not the disease? > People get much better, get to feeling like the goo is gone, Life is > good and they go off of it and in 3 to 6 months it comes back, > meanwhile your doctor moved and the new guy is terrified of it. etc, > etc, etc. Like I said... Susan > x-no-archive: yes > [quoted text clipped - 29 lines] > > Susan Susan: I think you should take your own advise. You have no problem what so ever in shareing your experiences in the most emphatic manner. No I don't know anything about endocrine function. Twenty four years ago I just had a thyroid virus which made my thyroid levels peak at 4 time the normal values years, and lived on propanadol for 6 months, have a bad reaction to predisone, and do well on Sporanox. The spontanous recovery of my thyroid function after radioactive Iodine treatment was a medical anomolie 24 years ago, so that is always the first place they look. Were I listening to your advice, I would deprive myself of a chance to lead a comparatively normal life. My endrocrine fuction has been checked out something like 3 or 4 times. At Michigan, Oklahoma and Duke, all intimating that the root cause of my sinusitis was going to some endroine abnormality even though I am not cold, don't have thinning skin or hair, and a little over weight, but not much, don't have fat pads on my collar bone or petichie or what ever the red spot are called, anyway I only have pain under my sholdier blade, down my spine, in the side of my heels and very intense"heart burn" that goes away when my sinuses are treated, but they still took 5, 50 ml tubes of blood, and once silivia several times a day and only to prove that i am now "unremarkable". They even gave me propanadol again to check. It just made me tried. There is what works and there is what does not work. When people say that they have been treated with antibotics they can be treated with an effective one or an ineffective one. When they have been treated with an antifungal, they can be treated with one that infamously causes side effects like ampho, or one that has a lower side effect profile. And since Sporanox has no antibacterial profile, but known to be fungistatic, not a fungicide, that is the basis for a working hypothisis that the beast the Sporanox is holding at bay is a fungus. It is annoying as heck to be dependent on taking a pill every day, which gets to be expensive and I got a batch from a local pharmacy that did not look or taste right. I have better results quality consistancy and price ordering from MedsMexico, but who knows how long that will be true? When I retire I would rather not have to spend my retirement income makeing up the difference in the cost of my medicine. That is why I have focused on finding a cure, and failing that some growable botanical that is as effective that I can grow in the back yard. > Susan: > > I think you should take your own advise. You have no problem what so > ever in shareing your experiences > in the most emphatic manner. Absolutely true, but I don't prescribe drugs or diagnose, I extrapolate and suggest that others just use information to find their own answers. That's a very big distinction. > No I don't know anything about endocrine function. Yet you'rerecommending potentially deadly treatment for someone who has multiple endocrine dysfunction. Can you allow as how telling someone to take a drug that shuts down the adrenals might be a bad idea? Twenty four years > ago I just had a thyroid virus which made my thyroid levels peak at 4 > time the normal values years, and lived on propanadol for 6 months, [quoted text clipped - 5 lines] > Were I listening to your advice, I would deprive myself of a chance to > lead a comparatively normal life. Nonsense. My advice is always to be aggressive in doing your own research and in seeking intervention. I just don't prescribe intervention to others over the internet. I'm happy for anyone who's found a successful treatment for what ails them. > My endrocrine fuction has been checked out something like 3 or 4 > times. At Michigan, Oklahoma and Duke, all [quoted text clipped - 8 lines] > to prove that i am now "unremarkable". They even gave me propanadol > again to check. It just made me tried. I have no idea what this has to do with Ellen. > There is what works and there is what does not work. Nope. that's concrete, limited thinking. What works best is what gets to the basis one one's health problem. > When people say that they have been treated with antibotics they can > be treated with an effective one [quoted text clipped - 15 lines] > growable botanical that is as effective that I can grow in the back > yard. Elizabeth, you've gone on at great length about stuff that has zero to do with the point I was making. Susan > x-no-archive: yes > [quoted text clipped - 76 lines] > > Susan Susan: The point you are ALWAYS making is to be careful.. But it often does not sound like that, it often sounds like BE AFRAID BE VERY AFRAID I can hardly remember ONE drug treatment that you havn't done this number on. It is okay to do research on side effects, but what you do borders on fear mongering. The 1st point that I AM making is that Ellen has not exhausted her options by a long shot. The 2ed point that I was making is that it SURE SOUNDS LIKE you have diagnosed Ellen with Cushing's over the internet. And maybe she has told you something that she has not told me, but nothing that she has written is inconsistant with chronic sinusitis, nor indicates that Sporanox would be fatel, but the chronic sinusitis can be so painful fatigueing and depressing that life is not worth living!!!!!, and Sporanox would be the next logical step. More important than that is the idea that THERE IS HOPE, that there ARE THINGS THAT MORE OR LESS WORK!!!!!!!!!!! Adrenal testing and remediation, if you like, Sporanox, long term macrolides, things that keep us functional today so that we can find and enjoy a cure tommorow. > Susan: > The point you are ALWAYS making is to be careful.. [quoted text clipped - 6 lines] > It is okay to do research on side effects, but what you do borders on > fear mongering. It's information, Elizabeth. You give prescriptive orders, I give information. It's also fear mongering to tell people nothing will work until they do what you tell them to. > The 1st point that I AM making is that Ellen has not exhausted her > options by a long shot. I believe I made that point. You told a person with endocrine dysfunction to take a drug that is known to trigger adrenal shutdown. > The 2ed point that I was making is that it SURE SOUNDS LIKE you have > diagnosed Ellen with Cushing's over the internet. I told her she had consistent symptoms and gave her a resource to check it out. I'm not qualified to diagnose, and if I were, I wouldn't diagnose or prescribe treatment over the internet. > And maybe she has told you something that she has not told me, but > nothing that she has written is inconsistant > with chronic sinusitis, nor indicates that Sporanox would be fatel, > but the chronic sinusitis can be so painful fatigueing and depressing > that life is not worth living!!!!!, and Sporanox would be the next > logical step. If Ellen has an endocrine disorder that is diabling her immunity, no amount of your beloved Sporonox will keep infection at bay. You're abouta drug bullet, I'm about finding the source of the problem so the drugs can do their job. Ellen is not YOU, she has a different health picture. Have you noticed how you've turned a discussion about her unique concerns and suffering into an All About Elizabeth tome? > More important than that is the idea that THERE IS HOPE, that there > ARE THINGS THAT MORE OR LESS WORK!!!!!!!!!!! > Adrenal testing and remediation, if you like, Sporanox, long term > macrolides, things that keep us functional today so that we can find > and enjoy a cure tommorow. Elizabeth, you're kind of off your rails, it seems to me. Susan > x-no-archive: yes > [quoted text clipped - 55 lines] > > Susan Susan: First: Where and when was it established that Ellen has endocrine dysfunction? E > Susan: > > First: Where and when was it established that Ellen has endocrine > dysfunction? Quoting Ellen: "i do know that i've always had something off re: hormones in general - had nasty acne as a young adult, some chin hair growth that began at that same time, i'm still at about that weight (which is pretty thin - then it was muscle). back then i was told excess androgens - no big deal. sometime in the last 5 years or so i asked an ob/gyn about hormonal imbalances & other endocrine issues & i recall she said something like - "& if we find something, then what are we supposed to do?" well hell if i know." It's very clear from this that Ellen has significant endocrine dysfunction, whether or not you recognize it. I'm officially out of this thread, which has completely moved from Ellen's concerns to yours. Susan > x-no-archive: yes > [quoted text clipped - 21 lines] > > Susan susan & elizabeth, i've been very appreciative of all the experience, knowledge, encouragement, & support that you bring to this group & to me. in the few months that i've been posting, you've helped me through my worst acute sinusitis ever, helped to point me in the right direction for sinus care, & have given me alot of excellent information to further my understanding of this disease,it's manifestations, treatment options, & complicating factors. & all of that has helped me to continue to unravel the many variables that seem to complicate my heath picture. i always value what each of you have to offer & i do so as well here. i will add your information to my evergrowing list of possibilities & will hopefully have some dialogue soon with some medical professionals who may be able to help me sort things out on the next step. frankly, i'm in one of my not capable of sorting laundry modes. so when this happens, i move even more slowly & cautiously than ever. this week i've just been trying to live through the perimenopausal pms from hell & find some return to middle ground, sleep, normal mood states, & somewhat useful cognitive functioning. thanks to both of you for your responses & concerns, ellen > It's very clear from this that Ellen has significant endocrine > dysfunction, whether or not you recognize it. 1. This sounds like a diagnosis to me. > I'm officially out of this thread, which has completely moved from > Ellen's concerns to yours. Nope! Can't be prescriptive, but CAN offer anacdotal evidence! You were being presumptive. I was trying to give a dry clue that I have run into the endocrine thing before. Re adrenal shutdown. Your adrenals shut down all the time. They are part of a feedback loop. Steroids are fat based harmones and have a very long half-life (weeks) in the body. The most common cause of Cushing's (and I don't have time to look it up right now, as soon as the truck battery is charged I gotta go) is exogenous steroid consumption. So if one overdoes it on predisone or cortisone in the course of sinus treatment then one can get Cushing's while treating sinusitis!!!! >>It's very clear from this that Ellen has significant endocrine >>dysfunction, whether or not you recognize it. > > 1. This sounds like a diagnosis to me. I'm not responsible for the illogical and irrational conclusions you come to. Susan > Susan: > [quoted text clipped - 4 lines] > > E. Yes, and the cells become accustomed to functioning with high levels of cortisol. Sudden lowering causes one to experience adrenal crisis. Trust me on this; I've been living it. Susan Ellen, for me, it was chronic low dose macrolides that have made all the difference: I've been on them since 2002, and it didn't create the miracle cure, but slowly and surely the episodes of sinusitis actually stopped (I hesitate to say that, I don't want to jinx myself.) I was in touch with an ENT recently who is miserable with his own sinusitis, and was scheduled for surgery, but started the "new" flonase-- veramyst--and feels better. (He wonders if it's placebo, but he'll take any relief right now--and this guy is the smartest ENT I've ever met.) It's hard not to get discouraged when there are no easy answers, and no end in sight. I also appreciate the image of snorting lines of dust and mold... If it was easy, we wouldn't be posting. Maybe a longer course of low dose biaxin (250mg/day) or azithromycin 250mg once or twice a week would settle the inflammation. There's good data to support it. The macrolides are anti-inflammatory and stop adherence of bugs to mucosa. http://www.chestjournal.org/cgi/content/full/125/2_suppl/52S Just googling "low dose macrolides and chronic sinusitis" came up with lots of new references. Hoping it gets better soon. Judy > > Ellen, > [quoted text clipped - 54 lines] > thanks, > ellen > Ellen, for me, it was chronic low dose macrolides that have made all > the difference: I've been on them since 2002, and it didn't create the [quoted text clipped - 19 lines] > Hoping it gets better soon. > Judy hi judy, thanks for the post. i wish i had been more coherent at the ent visit. i have had some decent moment/hours/dare i say days of some clarity. but i couldn't say with any certainty that it was due to the azithromycin. i was kind of manifesting that way prior to my acute infection & i'm just not sure what is affecting what right now. the ent wanted to see what my ob/gyn said as well. so i don't think the macrolides have been totally tossed out as a treatment option. we also discussed probiotics & immune health, but i've already been taking those for several months. so while i ride the perimenopausal rollercoaster, i'll see soon i suppose what's around the next corner (not thinking of large drops today). sure glad things are working for you. ellen ellen
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