FearlessYeti
10-24-2005, 02:00 PM
Forgive me for reposting this, but I noticed that there were very few views of most threads on the Cold and Flu board where I posted it originally. I guess allergies have more to do with immunology anyway, so it might fit better in this forum. :)
Sex: Male
Age: 23 (24 in Dec.)
Hi
I've always had strange immunological issues which are pretty ambiguous and haven't been pinned down yet, including symptoms mirroring wegener's, CF, SLE, sarcoidosis, etc. and my labs have always shown significantly increased histamine and eosinophil levels. (However I always test negative for ANAs, RF, sweat test, etc. - I still need my ACE checked but they are stubborn about that; seeing immunology on Nov. 9th to try and make some headway). Chest X-rays and sinus CT are always normal (beyond normal; the picture of health, apart from some pronounced broadening of my lung space)
Anyway, this has always been passed off as "allergies" and "asthma," and tends to result in unusually severe upper respiratory infections at least once or twice a year. (Usually more). They also coincide with unusual tertiary symptoms including those of the above mentioned syndromes which, presumably, I don't have. I also experience muscle weakness, occasionally to the point of not being able to walk without a cane. Typically I'm treated with Augmentin and/or Erythromycin for 21 days, and it resolves.
For some reason, this year has been particularly miserable. I've had five of these episodes beginning in January, and with the exception of this current one, they have occured precisely two months apart to the day. Sputum specimens and throat cultures don't show any bacteria resistance to beta lactam antibiotics, and no anaerobes.
This last one however has persisted despite our best efforts. Today is day thirty eight of it, despite 28 days of Levofloxacin (this was an attempt to use the greater penetration and lack of cross resistance between beta lactams and fluoroquinolones to stop it from coming back, just in case the lab missed something resistant), which was ruled a clinical failure, and (so far) 11 days of Augmentin (which they put me back on despite concerns of beta lactam antibiotic resistance ...) At the end of 14 days, they will reassess and decide whether to give me seven to ten more days. At the moment, I actually feel worse, rather than better.
In the past, concurrent Augmentin and Erythromycin did the trick in this kind of situation, but my doctor is reluctant to give me another antibiotic, opting to see whether this is all just an immunological "episode" that will pass on it's own. That may well be the underlying cause, and I'm well aware of the concern about resistance being bred, but I also know what sinusitis smells and tastes (literally - sorry to be gross) like and that by not taking the gloves off we are making it stronger. This is a bacterial infection, and needs to be more effectively (and in my opinion, more agressively) treated. If I had my way I'd be on Moxifloxacin or Clarythromycin and along with more Augmentin. But I'm just the patient, so what do I know?
I can't afford to see anyone else, as I have only city provided health coverage and very little money. Can immunologists prescribe?
Suggestions?
Sex: Male
Age: 23 (24 in Dec.)
Hi
I've always had strange immunological issues which are pretty ambiguous and haven't been pinned down yet, including symptoms mirroring wegener's, CF, SLE, sarcoidosis, etc. and my labs have always shown significantly increased histamine and eosinophil levels. (However I always test negative for ANAs, RF, sweat test, etc. - I still need my ACE checked but they are stubborn about that; seeing immunology on Nov. 9th to try and make some headway). Chest X-rays and sinus CT are always normal (beyond normal; the picture of health, apart from some pronounced broadening of my lung space)
Anyway, this has always been passed off as "allergies" and "asthma," and tends to result in unusually severe upper respiratory infections at least once or twice a year. (Usually more). They also coincide with unusual tertiary symptoms including those of the above mentioned syndromes which, presumably, I don't have. I also experience muscle weakness, occasionally to the point of not being able to walk without a cane. Typically I'm treated with Augmentin and/or Erythromycin for 21 days, and it resolves.
For some reason, this year has been particularly miserable. I've had five of these episodes beginning in January, and with the exception of this current one, they have occured precisely two months apart to the day. Sputum specimens and throat cultures don't show any bacteria resistance to beta lactam antibiotics, and no anaerobes.
This last one however has persisted despite our best efforts. Today is day thirty eight of it, despite 28 days of Levofloxacin (this was an attempt to use the greater penetration and lack of cross resistance between beta lactams and fluoroquinolones to stop it from coming back, just in case the lab missed something resistant), which was ruled a clinical failure, and (so far) 11 days of Augmentin (which they put me back on despite concerns of beta lactam antibiotic resistance ...) At the end of 14 days, they will reassess and decide whether to give me seven to ten more days. At the moment, I actually feel worse, rather than better.
In the past, concurrent Augmentin and Erythromycin did the trick in this kind of situation, but my doctor is reluctant to give me another antibiotic, opting to see whether this is all just an immunological "episode" that will pass on it's own. That may well be the underlying cause, and I'm well aware of the concern about resistance being bred, but I also know what sinusitis smells and tastes (literally - sorry to be gross) like and that by not taking the gloves off we are making it stronger. This is a bacterial infection, and needs to be more effectively (and in my opinion, more agressively) treated. If I had my way I'd be on Moxifloxacin or Clarythromycin and along with more Augmentin. But I'm just the patient, so what do I know?
I can't afford to see anyone else, as I have only city provided health coverage and very little money. Can immunologists prescribe?
Suggestions?
Sponsor
Titchou
10-24-2005, 03:26 PM
Certainly immunologists can prescribe....they are physicians. I go to one for my allergies and asthma. Have you tried any sinus irrigation to flush out the mucous?
FearlessYeti
10-24-2005, 03:37 PM
Yeah, I do it all. Irrigation, humidity, dehumidity, saline spray, more fluids than any person should be able to consume... lol.
I'm on singulair, zyrtec, nasocort, albuterol, pulmicort, ibuprofen, sudafed, guaifenesin, and they even prescribed famotadine (pepcid) since it blocks a receptor responsible for histamine production in addition to its antacid effects. Basically everything short of prednisone, which has worked to great effect in the past.
Oh, see, an otolaryngologist once told me they couldn't prescribe antibiotics because they "weren't my doctor." I guess what he meant was "wouldn't," not "couldn't." lol
So provided I can hold out until the 9th (I'll run out of these on the 3rd if they give me one more week) maybe the immunologist will listen to me and prescribe something a little less first or second line-ish.
Interesting side note: macrolides like erythromycin and clarithromycin tend to work better on me. So I did some research, and even though they aren't as effective as other things a doctor would tend to prescribe instead of those (at least in the case of sinusitis), there is a mucoregulatory effect that they are only now beginning to document in any sort of comprehensive way, brought about by macrolide treatment. Apparently it impacts ciliary function, and reduces the density of secretions, completely independent from it's antibiotic effects (i.e. the latter doesn't cause thr former - they aren't sure what does, yet).
I'm on singulair, zyrtec, nasocort, albuterol, pulmicort, ibuprofen, sudafed, guaifenesin, and they even prescribed famotadine (pepcid) since it blocks a receptor responsible for histamine production in addition to its antacid effects. Basically everything short of prednisone, which has worked to great effect in the past.
Oh, see, an otolaryngologist once told me they couldn't prescribe antibiotics because they "weren't my doctor." I guess what he meant was "wouldn't," not "couldn't." lol
So provided I can hold out until the 9th (I'll run out of these on the 3rd if they give me one more week) maybe the immunologist will listen to me and prescribe something a little less first or second line-ish.
Interesting side note: macrolides like erythromycin and clarithromycin tend to work better on me. So I did some research, and even though they aren't as effective as other things a doctor would tend to prescribe instead of those (at least in the case of sinusitis), there is a mucoregulatory effect that they are only now beginning to document in any sort of comprehensive way, brought about by macrolide treatment. Apparently it impacts ciliary function, and reduces the density of secretions, completely independent from it's antibiotic effects (i.e. the latter doesn't cause thr former - they aren't sure what does, yet).
Titchou
10-24-2005, 03:45 PM
Wish you hadn't told me that about mycins....had taken them for years will no ill effects until a sinus infection last year....cleared it up but I spiked a fever and my lips blistered...so now we add those to the growing list of antibiotics I can't take....which is most of the ones you've taken! Hope I don't get another snus infection...
sneezydiva
10-24-2005, 04:58 PM
Wow! You are really suffering! I take zyrtec, flonase, singulair, sudaphed/guaifenesin and patanol eyedrops. I was like you with recurrent sinus infections and bronchitits. My sinus CT's also didn't look "too bad" but I hate to say it, but I never got complete relief until after I had sinus surgery.
One thing you should ask about is getting some prednisone. My allergist would prescribe a short taper with the Leviquin or Augmentin and it helped clear the infection much faster than the antibiotic alone. You'll get horrible PND for a while, but that means the sinus tissues are less swollen and stuff is finally able to drain.
You also sound like a candidate for allergy shots, if you can get them.
One thing you should ask about is getting some prednisone. My allergist would prescribe a short taper with the Leviquin or Augmentin and it helped clear the infection much faster than the antibiotic alone. You'll get horrible PND for a while, but that means the sinus tissues are less swollen and stuff is finally able to drain.
You also sound like a candidate for allergy shots, if you can get them.
FearlessYeti
10-24-2005, 06:59 PM
Titchou, are you able to take tetracyclines or cephalosporins? You might ask your doctor about ketolides if you haven't already tried that as well (there may only be one available thus far, though).
Sneezydiva, ready for the trippy part? I've had allergy skin and serum testing multiple times and I'm hardly allergic to anything, and what I am allergic to is mild and non-seasonal. LOL. So ***? They assumed I'd have allergies off the charts and shots would fix everything, and instead they find out I'm hardly allergic at all? They were pretty perplexed, as was I.
I really, really, really want my ACE levels looked at. Clearly something autoimmune is going on if a sinus infection renders me unable to walk, y'know? lol That or something neurological, which would be scary. One disturbing thing is that my Mom has morphological and symptomatic signs of cardiac and pulmonary sarcoidosis, though the pulmonary component might be CF - they aren't sure yet. Given my symptoms though, it's worth noting.
The disturbing thing is that they now know you can have just one of the gene copies needed to have diseases such as CF, and not have the disease but still be symptomatic due to the presence of the gene. Not cool. That means lots of people could be walking around with intrinsically sub-clinical things that would almost certainly not get diagnosed or treated (if they even could be treated). Medical science doesn't like to acknowledge that people can sort of "almost" have this or that, rather than it being cut and dried. As in all things, they're being forced to accept now that clinical disease exists at many points within a spectrum, and can exist in grey areas that are very elusive or amorphous in nature.
I'm glad you found relief from your surgery. The mysterious thing in my case (and yet another reason we suspect something immunological) is that my ostia are wide open, I have no polyps, and there's no structural narrowing or obstruction of any kind. Like the rest of my respiratory tract in fact, everything's larger and wider than it should be, which is equally mystifying.
I would certainly LOVE some prednisone. I've begged my doctor for it throughout the year. It does indeed help me clear up rapidly - sometimes overnight! That's another odd feature of my "condition" whatever it's etiology is - I become ill over an extremely rapid 24 to 48 hour period (completely asymptomatic to full blown symptoms), and then when it goes away, I'm just as sick as ever the night before, but wake up feeling perfectly fine. It trips me out.
The problem with my primary care doctor is twofold. On the one hand, she believes I have chronic sinusitis. Technically speaking, I do. However, it's far more likely that that's a complication of an underlying inflammatory disorder of some kind, rather than the result of the more traditional causes such as nasal polyps. Failing to accept that possibility, she refuses to prescribe prednisone because it would suppress my immune system, and make my body less capable of fighting off the infection (an infection which, in fact, wouldn't exist if not for whatever my immune system is doing to impair my immunity so drastically in the first place! lol). The second problem is that she's on maternity leave right now, and the covering physician believes what I believe, but concludes from this that I shouldn't be on antibiotics. There needs to be a happy medium here lol. Know what I mean?
Anyway, my hopes rest with immunology on Nov. 9th. My goal is to convince them to give me prednisone, a different antibiotic, and to do some more serious blood labs than I've had thus far (especially ACE). I'd also really like them to plead the case for a sinus biopsy to ENT, who don't want to do that. If I have something like Wagener’s, they're very likely going to need a biopsy to diagnose it.
Sneezydiva, ready for the trippy part? I've had allergy skin and serum testing multiple times and I'm hardly allergic to anything, and what I am allergic to is mild and non-seasonal. LOL. So ***? They assumed I'd have allergies off the charts and shots would fix everything, and instead they find out I'm hardly allergic at all? They were pretty perplexed, as was I.
I really, really, really want my ACE levels looked at. Clearly something autoimmune is going on if a sinus infection renders me unable to walk, y'know? lol That or something neurological, which would be scary. One disturbing thing is that my Mom has morphological and symptomatic signs of cardiac and pulmonary sarcoidosis, though the pulmonary component might be CF - they aren't sure yet. Given my symptoms though, it's worth noting.
The disturbing thing is that they now know you can have just one of the gene copies needed to have diseases such as CF, and not have the disease but still be symptomatic due to the presence of the gene. Not cool. That means lots of people could be walking around with intrinsically sub-clinical things that would almost certainly not get diagnosed or treated (if they even could be treated). Medical science doesn't like to acknowledge that people can sort of "almost" have this or that, rather than it being cut and dried. As in all things, they're being forced to accept now that clinical disease exists at many points within a spectrum, and can exist in grey areas that are very elusive or amorphous in nature.
I'm glad you found relief from your surgery. The mysterious thing in my case (and yet another reason we suspect something immunological) is that my ostia are wide open, I have no polyps, and there's no structural narrowing or obstruction of any kind. Like the rest of my respiratory tract in fact, everything's larger and wider than it should be, which is equally mystifying.
I would certainly LOVE some prednisone. I've begged my doctor for it throughout the year. It does indeed help me clear up rapidly - sometimes overnight! That's another odd feature of my "condition" whatever it's etiology is - I become ill over an extremely rapid 24 to 48 hour period (completely asymptomatic to full blown symptoms), and then when it goes away, I'm just as sick as ever the night before, but wake up feeling perfectly fine. It trips me out.
The problem with my primary care doctor is twofold. On the one hand, she believes I have chronic sinusitis. Technically speaking, I do. However, it's far more likely that that's a complication of an underlying inflammatory disorder of some kind, rather than the result of the more traditional causes such as nasal polyps. Failing to accept that possibility, she refuses to prescribe prednisone because it would suppress my immune system, and make my body less capable of fighting off the infection (an infection which, in fact, wouldn't exist if not for whatever my immune system is doing to impair my immunity so drastically in the first place! lol). The second problem is that she's on maternity leave right now, and the covering physician believes what I believe, but concludes from this that I shouldn't be on antibiotics. There needs to be a happy medium here lol. Know what I mean?
Anyway, my hopes rest with immunology on Nov. 9th. My goal is to convince them to give me prednisone, a different antibiotic, and to do some more serious blood labs than I've had thus far (especially ACE). I'd also really like them to plead the case for a sinus biopsy to ENT, who don't want to do that. If I have something like Wagener’s, they're very likely going to need a biopsy to diagnose it.
Titchou
10-24-2005, 07:32 PM
No, can't do tetracycline (it won;t stay down so no point in taking it!) and I'm not sure about the other....my doctor has a comprehensive list of things we've tried and what happened...some just made me feel crappy...which is OK but hives, vomiting, blisters and anaphalaxis I just won't abide....anyway, I rarely get anything baterial so we'll just keep hoping that stays the case. That sinus infection was the first one in about 10 years so....I had taken the Z pak for an seriously infected toenail ( on the same toe I had had joint surgery only 3 weeks before) about 2 years before with no problem. But that's how these antibiotic allergies do me...one time it's fine and then the next something goes haywire. I was very sickly with throat and respiratory issues as a child (my mother refused to have my tonsils removed so I suffered until age 25 when I had them out on my own) and I think all those years of antibiotics screwed with my immune system...which already had allergy issues too.
Bottom line, good luck to you and keep us posted....
Bottom line, good luck to you and keep us posted....
FearlessYeti
10-24-2005, 08:45 PM
Titchou:
I'm really sorry to hear you have such a broad range of antibiotic sensitivities. Here's a list of Cehalosporins so you can determine whether you've had them. They include:
Cefaclor (Ceclor; Raniclor)
Cefadroxil (Duricef)
Cefamandole (Mandol)
Cefazolin (Ancef)
Cefdinir (Omnicef)
Cefditoren (Spectracef)
Cefepime (Maxipime)
Cefixime (Suprax)
Cefmetazole (Zefazone)
Cefonicid (Monocid)
Cefoperazone (Cefobid)
Cefotaxime (Claforan)
Cefotetan (Cefotan)
Cefoxitin (Mefoxin)
Cefpodoxime Proxetil (Vantin)
Cefprozil (Cefzil)
Ceftazidime (Fortaz)
Ceftibuten (Cedax)
Ceftizoxime (Cefizox)
Ceftriaxone (Rocephin)
Cefuroxime and Cefuroxime axetil (Ceftin; Zinacef)
Cephalexin (Keflex; Pan|xne Disperdose)
Cephalothin (Keflin; Seffin)
Cephapirin (Cefadyl)
Cephradine (Velosef)
Loracarbef (Lorabid)
The only ketolide that I'm aware of is called Telithromycin (Ketek, which I believe someone mentioned on this board recently). It's not a macrolide, but is structurally related to them, so there is the possibility of a similar allergic reaction to it as you'd have to macrolides.
The only other types of antibiotic you haven't already used that's FDA approved for the treatment of sinusitis are Lyncomycins (also structurally related to macrolides), only one of which is really safe (Clindamycin). However, there are some other antibiotics with unlabled but nonetheless well documented and clinically successful efficacy against the common bacterial causes of sinusitis.
I'm really sorry to hear you have such a broad range of antibiotic sensitivities. Here's a list of Cehalosporins so you can determine whether you've had them. They include:
Cefaclor (Ceclor; Raniclor)
Cefadroxil (Duricef)
Cefamandole (Mandol)
Cefazolin (Ancef)
Cefdinir (Omnicef)
Cefditoren (Spectracef)
Cefepime (Maxipime)
Cefixime (Suprax)
Cefmetazole (Zefazone)
Cefonicid (Monocid)
Cefoperazone (Cefobid)
Cefotaxime (Claforan)
Cefotetan (Cefotan)
Cefoxitin (Mefoxin)
Cefpodoxime Proxetil (Vantin)
Cefprozil (Cefzil)
Ceftazidime (Fortaz)
Ceftibuten (Cedax)
Ceftizoxime (Cefizox)
Ceftriaxone (Rocephin)
Cefuroxime and Cefuroxime axetil (Ceftin; Zinacef)
Cephalexin (Keflex; Pan|xne Disperdose)
Cephalothin (Keflin; Seffin)
Cephapirin (Cefadyl)
Cephradine (Velosef)
Loracarbef (Lorabid)
The only ketolide that I'm aware of is called Telithromycin (Ketek, which I believe someone mentioned on this board recently). It's not a macrolide, but is structurally related to them, so there is the possibility of a similar allergic reaction to it as you'd have to macrolides.
The only other types of antibiotic you haven't already used that's FDA approved for the treatment of sinusitis are Lyncomycins (also structurally related to macrolides), only one of which is really safe (Clindamycin). However, there are some other antibiotics with unlabled but nonetheless well documented and clinically successful efficacy against the common bacterial causes of sinusitis.
Titchou
10-24-2005, 09:17 PM
WOW, Fearless! You've really done your homework! I vaguely recall Keflex...does that give you a metallic taste for the duration of the use? If so, that's the one...nasty...gained weight trying to eat something to kill the taste! Anyway, I'll be sure to keep this list handy. Hopefully, I won't get another sinus infection. I've had my deviated septum repaired and my sinuses reamed out so everything usually drains pretty well. And I irrigate a lot...Thanks so much!
FearlessYeti
10-24-2005, 10:58 PM
Note that not all of those I listed are approved for the treatment of sinusitis, but some are - I listed them all just in case you had them for some other infection.
Many antibiotics can leave a metallic taste, but did you have any other negative reaction to Keflex? If not, hopefully cephalosporins will be a viable alternative for you. They're the most common replacements for people allergic to the commonly prescribed URI antibiotics.
No problem. ^_^ I'm glad your surgery fixed you up.
Many antibiotics can leave a metallic taste, but did you have any other negative reaction to Keflex? If not, hopefully cephalosporins will be a viable alternative for you. They're the most common replacements for people allergic to the commonly prescribed URI antibiotics.
No problem. ^_^ I'm glad your surgery fixed you up.
chigs489
10-25-2005, 02:33 PM
Traditional antibiotic therapy is not effective against chronic sinus infections. There is no blood flow in the sinuses -they are hollow caves in the face. Antibiotics can sometimes be effective against acute sinus infections, specifically if there is lung involvment. Antibiotics have an anti-inflammatory effect that can help the sinuses drain.
One option for you is Nebulized Antibiotics which theoretically attack the bacteria directly.
But a much better idea is sinus irrigation using a machine, 3ml of hydrogen peroxide, 5ml of Alkalol, and a tablespoon of Xyletol, 4 times a day for 3 days. Then remove the peroxide and continue doing this for 2 times a day.
Another option is IV antibiotics, but that would be a last resort.
have you had sinus surgery?
I should point out that 28 days on Levaquin in EXTREMELY dangerous. This is a medication with a lot of really bad, potentially life-threatening, side-effects. People who take it long term can end up in a wheelchair with ruptured tendons in the legs, vasculitis, peripheral neuropathy, and all sorts of serious health issues. The floroquinolones (Cipro, Avelox, and Levaquin) are propbably the most dangerous drugs on the market.
Your muscle issues may be a result of the Levaquin.
Also, these drugs should NEVER be taken with systemic steroids (Prednisone, Medrol, etc.). Bayer, et. al. are very specific about this. But I see ENTs making this mistake all the time.
One option for you is Nebulized Antibiotics which theoretically attack the bacteria directly.
But a much better idea is sinus irrigation using a machine, 3ml of hydrogen peroxide, 5ml of Alkalol, and a tablespoon of Xyletol, 4 times a day for 3 days. Then remove the peroxide and continue doing this for 2 times a day.
Another option is IV antibiotics, but that would be a last resort.
have you had sinus surgery?
I should point out that 28 days on Levaquin in EXTREMELY dangerous. This is a medication with a lot of really bad, potentially life-threatening, side-effects. People who take it long term can end up in a wheelchair with ruptured tendons in the legs, vasculitis, peripheral neuropathy, and all sorts of serious health issues. The floroquinolones (Cipro, Avelox, and Levaquin) are propbably the most dangerous drugs on the market.
Your muscle issues may be a result of the Levaquin.
Also, these drugs should NEVER be taken with systemic steroids (Prednisone, Medrol, etc.). Bayer, et. al. are very specific about this. But I see ENTs making this mistake all the time.
sneezydiva
10-25-2005, 03:04 PM
Wow! I sure hope the immunologist has some answers and is able to help. Please keep us posted. I hope you feel better soon.
FearlessYeti
10-25-2005, 03:10 PM
The problem is that I don't have chronic sinusitis - I have acute sinusitis on a more frequent than normal basis. There are two month long periods during which I'm entirely asymptomatic, and prior to this year, I only got sick once or twice a year. I'm responding to the antibiotics, just far more slowly than most people would.
Obviously, that alone isn't proof I don't have chronic sinusitis. Thus, it was initially considered that I have a FES, as you said. However, several CTs showed no sign of polyps or other obstruction, so it was ruled that it would be of little benefit (although, I have been trying to convince them to do a sinus aspiration for the purpose of getting an empirical specimen, and possibly a biopsy to rule out something like wegener's - to no avail). They couldn't even see any signs of inflammation, either with imaging or with the scope, except when I was actively ill.
Well, I have never had any negative side effects to any fluoroquinolones, and the side effects you mentioned are actually fairly rare, and primarily predominant in young children whose bones and tendons are still developing. What you say is true though - rarity doesn't equate to safety, so I don't want anyone to read what I just typed and think they can be complacent about the side effects. Levaquin can also have some psychological impact as well, especially when it's "getting on board" for the first time. Fortunately for me, I recently had a bone density and stress test done due to how sedentary I am when these episodes occur (why they didn't use this as a good excuse to justify checking my ACE, I don't know - they seem dead set against doing it), and all was well.
The muscular symptoms I described have occurred since these episodes began when I was 12 years old, before I ever popped my first antibiotic. It wouldn't account for the dependent-like (yet not dependent) edema either.
That's the baffling thing about all of this: repeated chest x-rays, CTs, and sinus CTs, have revealed no obstructions, inflammation, etc. consistent with anything other than acute (and mild, at that!) maxillary sinusitis. Specimens have never shown anything drug resistant, yet I have never recovered in less than 21-30 days of broad spectrum treatment.
Pretty much the only thing we haven't looked into yet is autoimmune disease (apart from Lupus - no ANAs). I somehow doubt that will yield the answers either, though. Both I and my mother suffer from strange systemic inflammatory issues, and these infections are just yet another complication of whatever that is. I still find it interesting that I recover more quickly taking simple erythromycin than anything else, given that my infections can produce such severe symptoms and appear to be so intractable at times.
Given my family's history of CF and other similar disorders, and the purulence of my secretions (well beyond the norm for sinusitis), the mucoregulatory effect macrolides can have could have a greater impact on me than the antibiotic itself. I'm speculating, of course. It stems from being desperate for answers, though. I can't work, and I've been trying to restart high school since I was 17 because of these health issues, and my doctor's unwillingness to investigate it further is very frustrating to me.
All that said, I still need antibiotics when I have these episodes. The two times (and the only times) I ever forwent them, I ended up hospitalized with pneumonia caused by a strain of mycoplasma. All this from "sinusitis and allergies." I know there are people with far worse problems, and I'm thankful for the health I have. I just want to live my life again, though.
Obviously, that alone isn't proof I don't have chronic sinusitis. Thus, it was initially considered that I have a FES, as you said. However, several CTs showed no sign of polyps or other obstruction, so it was ruled that it would be of little benefit (although, I have been trying to convince them to do a sinus aspiration for the purpose of getting an empirical specimen, and possibly a biopsy to rule out something like wegener's - to no avail). They couldn't even see any signs of inflammation, either with imaging or with the scope, except when I was actively ill.
Well, I have never had any negative side effects to any fluoroquinolones, and the side effects you mentioned are actually fairly rare, and primarily predominant in young children whose bones and tendons are still developing. What you say is true though - rarity doesn't equate to safety, so I don't want anyone to read what I just typed and think they can be complacent about the side effects. Levaquin can also have some psychological impact as well, especially when it's "getting on board" for the first time. Fortunately for me, I recently had a bone density and stress test done due to how sedentary I am when these episodes occur (why they didn't use this as a good excuse to justify checking my ACE, I don't know - they seem dead set against doing it), and all was well.
The muscular symptoms I described have occurred since these episodes began when I was 12 years old, before I ever popped my first antibiotic. It wouldn't account for the dependent-like (yet not dependent) edema either.
That's the baffling thing about all of this: repeated chest x-rays, CTs, and sinus CTs, have revealed no obstructions, inflammation, etc. consistent with anything other than acute (and mild, at that!) maxillary sinusitis. Specimens have never shown anything drug resistant, yet I have never recovered in less than 21-30 days of broad spectrum treatment.
Pretty much the only thing we haven't looked into yet is autoimmune disease (apart from Lupus - no ANAs). I somehow doubt that will yield the answers either, though. Both I and my mother suffer from strange systemic inflammatory issues, and these infections are just yet another complication of whatever that is. I still find it interesting that I recover more quickly taking simple erythromycin than anything else, given that my infections can produce such severe symptoms and appear to be so intractable at times.
Given my family's history of CF and other similar disorders, and the purulence of my secretions (well beyond the norm for sinusitis), the mucoregulatory effect macrolides can have could have a greater impact on me than the antibiotic itself. I'm speculating, of course. It stems from being desperate for answers, though. I can't work, and I've been trying to restart high school since I was 17 because of these health issues, and my doctor's unwillingness to investigate it further is very frustrating to me.
All that said, I still need antibiotics when I have these episodes. The two times (and the only times) I ever forwent them, I ended up hospitalized with pneumonia caused by a strain of mycoplasma. All this from "sinusitis and allergies." I know there are people with far worse problems, and I'm thankful for the health I have. I just want to live my life again, though.
FearlessYeti
10-25-2005, 03:16 PM
Thanks sneezydiva and everyone else - I appreciate it.
chigs489
10-25-2005, 05:16 PM
there are blood tests that can detect "possible" wegener's. An increased sed rate, high white blood cell count, etc. Incidence of inflammation somewhere in the body.
wegener's has a lot more symptoms than just sinus problems. There is usually kidney and vision problems.
I wouldn't jump to the conclusion that this is the problem -you are just going to stress yourself out more.
It sounds like an environmental allergy of some kind is causing a sudden immunological response, leading to sinus inflammation and acute infection.
wegener's has a lot more symptoms than just sinus problems. There is usually kidney and vision problems.
I wouldn't jump to the conclusion that this is the problem -you are just going to stress yourself out more.
It sounds like an environmental allergy of some kind is causing a sudden immunological response, leading to sinus inflammation and acute infection.
FearlessYeti
10-25-2005, 05:37 PM
Yes - which my doctor refuses to administer. :(
I'm not jumping to conclusions - its just one of many possibilities I want to consider in one fell swoop, rather than meticulously picking away one hypothesis at a time. The only reason I'm even considering it is because of the edema I experience. It's EXTREMELY rare, and highly improbable. My otolaryngologist suggested I look into it failing all else, though.
There are no environmental allergens involved in my "episodes."
See, this is the same problem I go through with every doctor I see. There is a typical, anticipated, probable set of reasons for every condition that people naturally want to eliminate before considering everything else. That's all well and good, except that I've already gone through the process of eliminating most things for more than a decade now with countless doctors and specialists. I have no seasonal allergies. I have very, very few respiratory, food, or substance allergies. My skin testing and serology labs showed that I'm not a particularly allergic person - yet I have ridiculously high immune mediator levels including eosinophil, TH1, histamine, and even serotonin.
We've confirmed through extensive air quality testing, induced respiratory challenge, etc. that there are no environmental factors. I do have some chemical sensitivities, but I avoid those (believe me, I’d know if I was around them – they manifest in distinctive ways) and I now use an IQAir HealthPro Plus filter to ensure I don’t have to encounter them on top of whatever is going on in my system that is self contained and not in response to anything outside it.
We've spent more money than we usually see in a year on these kinds of things over the last decade. There aren't any polyps. There aren't any obstructions to drainage, except for the inexplicable inflammation that is systemic, and in no way limited to my respiratory system. If I’m out in the sun for longer than ten minutes (no matter how well I cover up) I begin to suffer swollen, painful joints, feet, and hands. My heart is in excellent shape from what they can tell. If there isn't something autoimmune going on, then I'll be shocked, frankly.
I'm sorry if I sound frustrated. If I do, it's because I am. Not with you guys - just with the prospect of having to convince people, yet again, that I've been through this long enough and enough times to know what I'm talking about lol. I appreciate everyone's feedback and input though. I know you're just trying to help.
I'm not jumping to conclusions - its just one of many possibilities I want to consider in one fell swoop, rather than meticulously picking away one hypothesis at a time. The only reason I'm even considering it is because of the edema I experience. It's EXTREMELY rare, and highly improbable. My otolaryngologist suggested I look into it failing all else, though.
There are no environmental allergens involved in my "episodes."
See, this is the same problem I go through with every doctor I see. There is a typical, anticipated, probable set of reasons for every condition that people naturally want to eliminate before considering everything else. That's all well and good, except that I've already gone through the process of eliminating most things for more than a decade now with countless doctors and specialists. I have no seasonal allergies. I have very, very few respiratory, food, or substance allergies. My skin testing and serology labs showed that I'm not a particularly allergic person - yet I have ridiculously high immune mediator levels including eosinophil, TH1, histamine, and even serotonin.
We've confirmed through extensive air quality testing, induced respiratory challenge, etc. that there are no environmental factors. I do have some chemical sensitivities, but I avoid those (believe me, I’d know if I was around them – they manifest in distinctive ways) and I now use an IQAir HealthPro Plus filter to ensure I don’t have to encounter them on top of whatever is going on in my system that is self contained and not in response to anything outside it.
We've spent more money than we usually see in a year on these kinds of things over the last decade. There aren't any polyps. There aren't any obstructions to drainage, except for the inexplicable inflammation that is systemic, and in no way limited to my respiratory system. If I’m out in the sun for longer than ten minutes (no matter how well I cover up) I begin to suffer swollen, painful joints, feet, and hands. My heart is in excellent shape from what they can tell. If there isn't something autoimmune going on, then I'll be shocked, frankly.
I'm sorry if I sound frustrated. If I do, it's because I am. Not with you guys - just with the prospect of having to convince people, yet again, that I've been through this long enough and enough times to know what I'm talking about lol. I appreciate everyone's feedback and input though. I know you're just trying to help.
notpain
10-30-2005, 07:46 PM
Not to start an argument but it might help to consider taking supplements along with all of your medications. Vitamin C (Sodium Ascorbate Powder), Alpha Lipoic Acid, among others along with anti-inflammtory foods and supplements will help supply your body with additional natural infection fighters. Perhaps you do this already, but so many people just rely on the drugs to do the work. Drink more water if you are not already. You're body requires nutrition to work correctly, the only downside to nutritional approaches is they are slow, the real big upside is that time is going to pass anyways, why not give your body that little extra edge? It's easy and may just push you over the edge back to homeostasis. Foods like Galic are anti-microbial. And consider a solid probiotic like Bio-K (If you can stomach the taste of sour milk). Many many problems are the result of intestinal problems (even though we may not know we have them).
FearlessYeti
10-31-2005, 06:49 AM
I feel like I'm being unappreciative or rude by saying this, which is really not at all where I'm coming from :(
But I've done all of the things you mention for years, particularly the fluids and antiinflammatory and antioxidant dietary considerations. Even now I drink so much water and juice that my mucous ought to be liquified (not to mention by bowels lmao). The probiotic you mentioned as well as others do help me with respect to some gatrointestinal issues I had had for years, so that was a huge relief when I discovered something would alleviate that, but I would gladly trade whatever is wrong with me for constant gastric distress.
I just don't get what I'm doing wrong. I've read everything I can get my hands on, followed every suggestion I've ever received, etc. I eat right, I exercise (when I'm well enough to), I meditate, I've tried accupressure and acupuncture, I've taken tai chi and aikido when able, etc. etc. etc. I don't get why nothing is working.
Don't worry about starting an argument. If I sounded frustrated in my earlier posts, it was just because I was upset and hadn't slept in a couple of days (cough was keeping me up, and supressing it makes me worse). I'm a hippie, have no fear. Lol.
P.S. Garlic used to help a great deal, but since 2002 or so has actually made me worse (I suppose it could have to do with the immune boosting properties, if indeed I do have some kind of autoimmune thing going on, but I wouldn't think garlic would be that exacerbatory).
But I've done all of the things you mention for years, particularly the fluids and antiinflammatory and antioxidant dietary considerations. Even now I drink so much water and juice that my mucous ought to be liquified (not to mention by bowels lmao). The probiotic you mentioned as well as others do help me with respect to some gatrointestinal issues I had had for years, so that was a huge relief when I discovered something would alleviate that, but I would gladly trade whatever is wrong with me for constant gastric distress.
I just don't get what I'm doing wrong. I've read everything I can get my hands on, followed every suggestion I've ever received, etc. I eat right, I exercise (when I'm well enough to), I meditate, I've tried accupressure and acupuncture, I've taken tai chi and aikido when able, etc. etc. etc. I don't get why nothing is working.
Don't worry about starting an argument. If I sounded frustrated in my earlier posts, it was just because I was upset and hadn't slept in a couple of days (cough was keeping me up, and supressing it makes me worse). I'm a hippie, have no fear. Lol.
P.S. Garlic used to help a great deal, but since 2002 or so has actually made me worse (I suppose it could have to do with the immune boosting properties, if indeed I do have some kind of autoimmune thing going on, but I wouldn't think garlic would be that exacerbatory).
sneezydiva
10-31-2005, 10:25 AM
You know, I was always told my CT scans were normal or "not too bad" and I only had "mild" sinusitis. And then I developed an enlarged turbinite. At first my ENT was only going to operate on that. And I basically said, I'm not going to all this trouble, and under genreal anesthesia to not have you clean out my sinuses." So my allergist also talked to him, and we convinced him to enlarge the opening of my maxilary sinus and "take a look." Well, the nurse told me when I woke up that he spent "forever" cleaning out the gunk in my sinuses. And I felt better than I had in years.
I know CT scans are a marvel of modern medicine, but I think they have made ENTs too dependant and cautious. Twenty years ago, an ENT would be willing to operate on you, after all other treatments had been exhausted. And chances are, they would find a lot of stuff to clean out, and you would feel better. But now, they look at the CT scan, and because it doesn't look as bad as the last patient he just saw, they say there is nothing they can do for you, which is B.S. Someday, they are going to figure out that some people have less of an inflammatory response than other people (which is what a sinus CT shows, inflammation.) and people like us will get proper care.
Also, I am not convinced you don't have chronic sinusits. I would also go months without getting ill. But since sinus surgery 2 years ago, I've only had 2 infections total. Have you tried sinus irrigations?
Do you remember how you were allergy tested? Most importantly, were you off antihistimine medicines prior to the test?
I know CT scans are a marvel of modern medicine, but I think they have made ENTs too dependant and cautious. Twenty years ago, an ENT would be willing to operate on you, after all other treatments had been exhausted. And chances are, they would find a lot of stuff to clean out, and you would feel better. But now, they look at the CT scan, and because it doesn't look as bad as the last patient he just saw, they say there is nothing they can do for you, which is B.S. Someday, they are going to figure out that some people have less of an inflammatory response than other people (which is what a sinus CT shows, inflammation.) and people like us will get proper care.
Also, I am not convinced you don't have chronic sinusits. I would also go months without getting ill. But since sinus surgery 2 years ago, I've only had 2 infections total. Have you tried sinus irrigations?
Do you remember how you were allergy tested? Most importantly, were you off antihistimine medicines prior to the test?