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Sinusitis! Do I call my LLMD?
I don't know how it's possible to get a sinus infection while on abx for almost 2 months, but somehow I am coming down with one. I am also having a thyroid flare up (a little enlarged, severely dry skin, some hyper symptoms). Should I call my LLMD about the sinus infection? Maybe it's time for a change in abx?
"I do dare to hope they will propose what they DO think is wrong with me."
Absolutely! I think your approach and frame of mind is right -- good for you!
The white stuff from your sinuses is, I think, your immune system fighting the infection. If it turns green or yellow, that's bacterial and you need antibiotics.
NeilMed is in drugstores (and sometimes big grocery stores). The box has the squirty bottle, the instructions, and little packets of powder to mix with boiled, cooled-down water.
The 'circular firing squad' of docs, the endo, the rheumy, the ID doc, the PCP -- yes, you may get that again, but very possibly you won't from at least one of them. Which will be the next crumb in the trail of breadcrumbs taking you to diagnosis and getting well. :)
That Hopkins ordered a bartonella test is very encouraging! It means they are starting to get a clue. Yay!!
We're all rooting for you, and look forward to hearing how it goes -- this is progress!
Absolutely! I think your approach and frame of mind is right -- good for you!
The white stuff from your sinuses is, I think, your immune system fighting the infection. If it turns green or yellow, that's bacterial and you need antibiotics.
NeilMed is in drugstores (and sometimes big grocery stores). The box has the squirty bottle, the instructions, and little packets of powder to mix with boiled, cooled-down water.
The 'circular firing squad' of docs, the endo, the rheumy, the ID doc, the PCP -- yes, you may get that again, but very possibly you won't from at least one of them. Which will be the next crumb in the trail of breadcrumbs taking you to diagnosis and getting well. :)
That Hopkins ordered a bartonella test is very encouraging! It means they are starting to get a clue. Yay!!
We're all rooting for you, and look forward to hearing how it goes -- this is progress!
I have been using Advil cold and sinus and it helps when the pressure is unbearable. Advil by itself, does nothing. I can actually hear the crap multiplying and swelling in my head (popping and clicking and crackling), but the constant drainage out of the nose is a watery drip. The internal "post nasal drip" is thick cloudy clear/white mucous. Almost gel like. Sorry if that's tmi:/. It's making my vision super blurry. Anyway, I think I'm going to try the NeilMed sinus rinse. Is it available in most pharmacies?
Thanks for the advice on avoiding the "who have you that med and why" drill! I will redirect questioning back at him!
As far as not to expect much from Hopkins ID, I have read the warnings before and don't have my hopes up that they will take my Lyme diagnosis seriously, but do dare to hope they will propose what they DO think is wrong with me. There is no denying that I'm sick now. Visibly, it's obvious something has indeed gone haywire. So, I no longer fear the age-old it's all in your head diagnosis. The main problem that I am facing now is that specialists keep pointing their fingers at other specialists. The endo points towards rheum, the rheum points toward the endo, the PCP points toward ID, who will ID point at? I don't know, but if I stick with seeing every specialist at Hopkins eventually the finger pointing will have to end. They can argue amongst themselves who will be stuck to treat me.
I am most intrigued by the fact that they called me and set up an appt ASAP. Yes, my PCP did hand me a referral, but I never followed through with it. My intern at Hopkins ordered extensive bartonella testing and 2 weeks later I received the call.
Either way, I like what you said, Jackie, about not going in wanting the doctor to confirm what I think is wrong with me. I usually do that and get mad when they don't. So true. I need to know what the doctor thinks is wrong with me and move based on what treatment will help me best.
Thanks to all for your wonderful advice!!!
Thanks for the advice on avoiding the "who have you that med and why" drill! I will redirect questioning back at him!
As far as not to expect much from Hopkins ID, I have read the warnings before and don't have my hopes up that they will take my Lyme diagnosis seriously, but do dare to hope they will propose what they DO think is wrong with me. There is no denying that I'm sick now. Visibly, it's obvious something has indeed gone haywire. So, I no longer fear the age-old it's all in your head diagnosis. The main problem that I am facing now is that specialists keep pointing their fingers at other specialists. The endo points towards rheum, the rheum points toward the endo, the PCP points toward ID, who will ID point at? I don't know, but if I stick with seeing every specialist at Hopkins eventually the finger pointing will have to end. They can argue amongst themselves who will be stuck to treat me.
I am most intrigued by the fact that they called me and set up an appt ASAP. Yes, my PCP did hand me a referral, but I never followed through with it. My intern at Hopkins ordered extensive bartonella testing and 2 weeks later I received the call.
Either way, I like what you said, Jackie, about not going in wanting the doctor to confirm what I think is wrong with me. I usually do that and get mad when they don't. So true. I need to know what the doctor thinks is wrong with me and move based on what treatment will help me best.
Thanks to all for your wonderful advice!!!
In my view, the reason to go to a nonLLMD is to get his/her point of view, so that you can decide which route to take, after knowing what the options are.
Going into the appointment with a fixed point of view and wanting the doc to confirm your point of view is not, imo, a good use of time or money ... seeing an expert like the JH doc is to get the benefit of his/her experience and education, not to shop for confirmation of what you want to hear.
Good for you for continuing to question and search. I know how hard it is to find, see, sort and critique experts, most especially when you're ill. I think you're doing great --
Keep us posted --
Going into the appointment with a fixed point of view and wanting the doc to confirm your point of view is not, imo, a good use of time or money ... seeing an expert like the JH doc is to get the benefit of his/her experience and education, not to shop for confirmation of what you want to hear.
Good for you for continuing to question and search. I know how hard it is to find, see, sort and critique experts, most especially when you're ill. I think you're doing great --
Keep us posted --
Yes, getting the 'take' on a doctor is always good, even if the institution s/he works for has a bad reputation vis a vis Lyme. You might get lucky--- people have.
I can do that easily (and do) because I have excellent insurance (have never paid a dollar in co-pay). Some people don't.
If the doctor is geographically close----- then it's easy. If he isn't----- I have to factor in the 'cost' of my energy to get to the appointment. It's a sort of risk/benefit thing. :)
I can do that easily (and do) because I have excellent insurance (have never paid a dollar in co-pay). Some people don't.
If the doctor is geographically close----- then it's easy. If he isn't----- I have to factor in the 'cost' of my energy to get to the appointment. It's a sort of risk/benefit thing. :)
Despite the orientation the Johns Hopkins doc may have, in your situation I would still go for the appointment and see what happens. It's always good, imo, to get different views before deciding what to do, because then as you go along with whatever treatment you chose, you know what the options are and can make a knowing change in doc and/or treatment if you think it's a good idea.
It sounds like your head is in a good place, to listen, absorb, and then think through your next steps. I would do what you are doing.
You go, girl.
It sounds like your head is in a good place, to listen, absorb, and then think through your next steps. I would do what you are doing.
You go, girl.
I echo mojo's sentiment---- and will expand it to "I've known and read about dozens/hundreds of people who have gone to Johns Hopkins (substitute Mayo, UCSF, UCLA even Cleveland Clinic--- any well known hospital that otherwise is excellent) for Lyme and either received a royal run-around or a sub-standard dose of abx for Lyme."
"If you're treated with appropriate antibiotics in the early stages of the disease, you're likely to recover completely. In later stages, response to treatment may be slower, but the majority of people with Lyme disease recover completely with appropriate treatment."
"Antibiotics
Oral antibiotics. These are the standard treatment for early-stage Lyme disease. These usually include doxycycline for adults and children older than 8, or amoxicillin or cefuroxime for adults, younger children, and pregnant or breast-feeding women. A 14- to 21-day course of antibiotics is usually recommended, but some studies suggest that courses lasting 10 to 14 days are equally effective.
Intravenous antibiotics. If the disease involves the central nervous system, your doctor may recommend treatment with an intravenous antibiotic for 14 to 28 days. This is effective in eliminating infection, although it may take some time to recover from your symptoms. Intravenous antibiotics can cause various side effects, including a lower white blood cell count, mild to severe diarrhea, or colonization or infection with other antibiotic resistant organisms unrelated to Lyme.
After treatment, a small number of people still experience some symptoms, such as muscle aches and fatigue. The cause of these continuing symptoms is unknown, and treating with more antibiotics doesn't help. Some experts believe that certain people who get Lyme disease are predisposed to develop an autoimmune response that contributes to their symptoms. More research is needed."
That's pretty much a rubber-stamp version of all the large hospitals---- because they use the CDC Lyme tests and they test by CDC standards, which is very low standard.
I have heard of an occasional doctor or two at some of these hospitals who 'sneak past the gate-watchers' but their names aren't given out, of course.
Lei----- "got a phone call 2 days ago. infectious Disease at Hopkins wants to see me Wednesday. Do I dare hope they will be willing to help me?"
You can hope---- and you might find one of the 'maverick' doctors there who will actually treat longer. I know they're there---- but it's like shooting craps.
"If you're treated with appropriate antibiotics in the early stages of the disease, you're likely to recover completely. In later stages, response to treatment may be slower, but the majority of people with Lyme disease recover completely with appropriate treatment."
"Antibiotics
Oral antibiotics. These are the standard treatment for early-stage Lyme disease. These usually include doxycycline for adults and children older than 8, or amoxicillin or cefuroxime for adults, younger children, and pregnant or breast-feeding women. A 14- to 21-day course of antibiotics is usually recommended, but some studies suggest that courses lasting 10 to 14 days are equally effective.
Intravenous antibiotics. If the disease involves the central nervous system, your doctor may recommend treatment with an intravenous antibiotic for 14 to 28 days. This is effective in eliminating infection, although it may take some time to recover from your symptoms. Intravenous antibiotics can cause various side effects, including a lower white blood cell count, mild to severe diarrhea, or colonization or infection with other antibiotic resistant organisms unrelated to Lyme.
After treatment, a small number of people still experience some symptoms, such as muscle aches and fatigue. The cause of these continuing symptoms is unknown, and treating with more antibiotics doesn't help. Some experts believe that certain people who get Lyme disease are predisposed to develop an autoimmune response that contributes to their symptoms. More research is needed."
That's pretty much a rubber-stamp version of all the large hospitals---- because they use the CDC Lyme tests and they test by CDC standards, which is very low standard.
I have heard of an occasional doctor or two at some of these hospitals who 'sneak past the gate-watchers' but their names aren't given out, of course.
Lei----- "got a phone call 2 days ago. infectious Disease at Hopkins wants to see me Wednesday. Do I dare hope they will be willing to help me?"
You can hope---- and you might find one of the 'maverick' doctors there who will actually treat longer. I know they're there---- but it's like shooting craps.
Don't want to burst your bubble but know someone who went to Hopkins and they got the usual 2 weeks of medicine routine. Unless someone new has arrived, they are the same old CDC standard of treating.
Well said.
Leila, this is good advice from Rico -- she's much better informed than I.
Leila, this is good advice from Rico -- she's much better informed than I.
I recommend the NeilMed sinus rinse. But you can only use it when both nasal passages are at least partially open.
I once gave myself a sinus infection by using sudafed for a couple weeks to reduce allergy swelling. My GP said she hates sudafed and told me not to use it. (I still do on rare occasion when I can't breathe through my nose at all.) She said it dries up the sinuses, and extended use makes them irritated and susceptible to infection.
I dislike doing the rinse, but I like the results. Washing out the infected goo helps them heal. It's great for flushing out allergens and irritants, too. You must use filtered or distilled water and you must boil it first to prevent introduing some water borne pathogen into your sinuses. You don't want dissolved metals or chlorine in your irritated sinuses either. I have a high quality water filter that I use, and then I just microwave it for 2-3 minutes.
Careful with that, though, as water boiled too fast in a microwave can explode and burn you when you go to pick it up. You can always put a wooden spoon (or clean popsicle stick) in the water while it heats in the microwave. The wood prevents it from exploding.
You might also look into anti-inflammatory foods (just google it.. there's good articles out there), and avoid foods known to trigger inflammation, esp. dairy & gluten. I take the occasional non-steroidal anti-inflammatory, specifically Advil.
Sinusitis is a known symptom of Lyme, but then it's really common all by itself, too. I had a horrific bacterial infection in early April, despite being on a fairly high dose of Augmentin. Apparently that abx wasn't even touching the bug that infected me. Could be the same with your sinuses. You could be on the wrong antibiotic for it.
Regarding the possibility of being questioned about who is giving you doxycycline, I have been asked this directly twice by other doctors. Both times it wasn't a casual question, but rather one asked with a penetrating look. Both times, I talked in circles and didn't give the name. They didn't ask again. I've just read too many stories of LLMDs being reported to medical boards by other physicians treating the same patients. Doctors are encouraged to report malpracticing colleagues so that incompetent doctors don't go on hurting patients because no one will say anything. I just don't want to be the cause of any hassle for my LLMD by giving his name to a doc arrogant enough to file a complaint based on my hearsay.
Don't be afraid to say you're on Doxycycline for a Lyme Disease diagnosis. If they want to "inform" you about why they disagree with this, listen politely and then try to redirect the topic back to what the doc DOES think you have. (That shut up one of my my docs. While he was sure I didn't have Lyme or Babesia, he had no alternative to suggest.) If a JH doc wants to diagnose you with Bartonella and treat you, then ask what the treatment plan is. Then call your LLMD and talk it through. Then you can decide how to proceed.
Some research universities are aware that Bartonella can be nasty due to some research and publications in the 80's and 90's on AIDS patients with it. It is during the AIDS crisis that they discovered how bad Bartonella can be. There was lots of research money to look into the various secondary diseases that immune compromised HIV patients were experiencing. Bart was previously thought to be mild and self limiting, not requiring treatment. Unfortunately, this is what most doctors still believe. In my case, I had to spell it for my GP. I don't think she'd even heard of it.
I recently found a paper by a UCSF ID doc who actually says that relapse is common, especially if treatment is only for a couple weeks. She said she treats most patients for 2-4 months, with some longer, and even mentions that lifelong treatment may be necessary (for immune compromised patients, such as AIDS patients or organ transplant recipients). I was treated for 6 months for Bart ending a year ago, and it looks like I'm relapsing. Of course I had Babesia the whole time, too. My point is that if a JH doc does want to treat you for Bart and says 2-4 weeks of Rifampin should do the trick, then you probably won't get well with that doc. Ask if he's willing to continue treating you longer if you still show signs of Bart. There is no consensus whatsoever on treatment, so it should be based on patient response, not some arbitrary length of time.
Of course this may all be moot! Just puttin' my thoughts out there, for what they're worth.
I once gave myself a sinus infection by using sudafed for a couple weeks to reduce allergy swelling. My GP said she hates sudafed and told me not to use it. (I still do on rare occasion when I can't breathe through my nose at all.) She said it dries up the sinuses, and extended use makes them irritated and susceptible to infection.
I dislike doing the rinse, but I like the results. Washing out the infected goo helps them heal. It's great for flushing out allergens and irritants, too. You must use filtered or distilled water and you must boil it first to prevent introduing some water borne pathogen into your sinuses. You don't want dissolved metals or chlorine in your irritated sinuses either. I have a high quality water filter that I use, and then I just microwave it for 2-3 minutes.
Careful with that, though, as water boiled too fast in a microwave can explode and burn you when you go to pick it up. You can always put a wooden spoon (or clean popsicle stick) in the water while it heats in the microwave. The wood prevents it from exploding.
You might also look into anti-inflammatory foods (just google it.. there's good articles out there), and avoid foods known to trigger inflammation, esp. dairy & gluten. I take the occasional non-steroidal anti-inflammatory, specifically Advil.
Sinusitis is a known symptom of Lyme, but then it's really common all by itself, too. I had a horrific bacterial infection in early April, despite being on a fairly high dose of Augmentin. Apparently that abx wasn't even touching the bug that infected me. Could be the same with your sinuses. You could be on the wrong antibiotic for it.
Regarding the possibility of being questioned about who is giving you doxycycline, I have been asked this directly twice by other doctors. Both times it wasn't a casual question, but rather one asked with a penetrating look. Both times, I talked in circles and didn't give the name. They didn't ask again. I've just read too many stories of LLMDs being reported to medical boards by other physicians treating the same patients. Doctors are encouraged to report malpracticing colleagues so that incompetent doctors don't go on hurting patients because no one will say anything. I just don't want to be the cause of any hassle for my LLMD by giving his name to a doc arrogant enough to file a complaint based on my hearsay.
Don't be afraid to say you're on Doxycycline for a Lyme Disease diagnosis. If they want to "inform" you about why they disagree with this, listen politely and then try to redirect the topic back to what the doc DOES think you have. (That shut up one of my my docs. While he was sure I didn't have Lyme or Babesia, he had no alternative to suggest.) If a JH doc wants to diagnose you with Bartonella and treat you, then ask what the treatment plan is. Then call your LLMD and talk it through. Then you can decide how to proceed.
Some research universities are aware that Bartonella can be nasty due to some research and publications in the 80's and 90's on AIDS patients with it. It is during the AIDS crisis that they discovered how bad Bartonella can be. There was lots of research money to look into the various secondary diseases that immune compromised HIV patients were experiencing. Bart was previously thought to be mild and self limiting, not requiring treatment. Unfortunately, this is what most doctors still believe. In my case, I had to spell it for my GP. I don't think she'd even heard of it.
I recently found a paper by a UCSF ID doc who actually says that relapse is common, especially if treatment is only for a couple weeks. She said she treats most patients for 2-4 months, with some longer, and even mentions that lifelong treatment may be necessary (for immune compromised patients, such as AIDS patients or organ transplant recipients). I was treated for 6 months for Bart ending a year ago, and it looks like I'm relapsing. Of course I had Babesia the whole time, too. My point is that if a JH doc does want to treat you for Bart and says 2-4 weeks of Rifampin should do the trick, then you probably won't get well with that doc. Ask if he's willing to continue treating you longer if you still show signs of Bart. There is no consensus whatsoever on treatment, so it should be based on patient response, not some arbitrary length of time.
Of course this may all be moot! Just puttin' my thoughts out there, for what they're worth.
About the sinus, I'm not medically trained, but I have in that situation taken decongestants, which reduced the swelling and may open up the nasal cavity. Read the package labels to be sure you are getting decongestants. There are two kinds commonly sold, under various brand names like Sudafed, but you have to read the box to know what chemical you are getting. The chemicals are usually either:
1 -- pseudoephedrine -- this one is now kept behind the counter, and you have to show your drivers license/ID, since drug dealers have figured out how to cook it in some fashion to make illegal drugs out of it. This one is, however, in my experience, much more effective than #2 below:
2 -- phenylephrine -- this is a lighter version of the one above .... the drug dealers can't cook this to make illegal drugs, so you just take it off the shelf and pay for it at the register, no ID needed. It just doesn't work for me.
You could also try 'nasal lavage', with a squirt bottle with a certain mixture in it. There is a kit sold by a company called NeilMed Sinus Rinse, which is a specially formulated powder you mix with distilled or boiled water (not straight from the tap), mixed with little packets of the NeilMed stuff, and gently rinse out your sinuses. I've tried it, didn't much care for it, and you have to follow the instructions so as not make things worse somehow in ways I don't really understand.
A long hot shower might help too, because the steam helps open the nasal passages.
Hot washcloth over the sinus area also may help things open up, or putting a towel over your head and breathing in the air from a bowl of steaming water.
All these are mechanical approaches to relief, and will not kill any bacteria.
Be sure you do not apply so much pressure in trying to clear out your sinus (by blowing your nose) that you cause the bad stuff to get forced back up into your inner ear. That can spread the trouble and give you an ear infection.
Mainly, to get rid of the congested feeling, take a decongestant (like pseudoephedrine, mentioned above). Read the bottles at the drug store: you don't need an antihistamine, unless it's allergies. JUST the decongestant is what you need, and that's when I go for the Sudafed or other pseudoephedrine.
===========================================
About the Hopkins appointment, it never hurts to go hear what the doc has to say. You may disagree, but at least you will hear it from the horse's mouth.
Definitely tell the doc you are or have taken doxy of ___ dosage and how many times a day for how many days. I doubt very much that the doc will ask you who prescribed it. Doxy is the USUAL drug to give for Lyme, at least by nonLLMDs, so the JH doc probably won't care. If he presses you, just look blank and say 'Gosh, I just went blank on his name.' He's not allowed to torture you or anything, and I doubt he will even ask. He may ask what dose and for how long you took it. Do tell him that.
I'd go to the appointment with the idea that I will tell him how I have been feeling for about how long, that a doc put you on doxy for X days, and you're still not feeling any better, and take it from there.
I'm just guessing at all this, but since you asked for ideas ... there you go! Hope you feel better soon. :)
1 -- pseudoephedrine -- this one is now kept behind the counter, and you have to show your drivers license/ID, since drug dealers have figured out how to cook it in some fashion to make illegal drugs out of it. This one is, however, in my experience, much more effective than #2 below:
2 -- phenylephrine -- this is a lighter version of the one above .... the drug dealers can't cook this to make illegal drugs, so you just take it off the shelf and pay for it at the register, no ID needed. It just doesn't work for me.
You could also try 'nasal lavage', with a squirt bottle with a certain mixture in it. There is a kit sold by a company called NeilMed Sinus Rinse, which is a specially formulated powder you mix with distilled or boiled water (not straight from the tap), mixed with little packets of the NeilMed stuff, and gently rinse out your sinuses. I've tried it, didn't much care for it, and you have to follow the instructions so as not make things worse somehow in ways I don't really understand.
A long hot shower might help too, because the steam helps open the nasal passages.
Hot washcloth over the sinus area also may help things open up, or putting a towel over your head and breathing in the air from a bowl of steaming water.
All these are mechanical approaches to relief, and will not kill any bacteria.
Be sure you do not apply so much pressure in trying to clear out your sinus (by blowing your nose) that you cause the bad stuff to get forced back up into your inner ear. That can spread the trouble and give you an ear infection.
Mainly, to get rid of the congested feeling, take a decongestant (like pseudoephedrine, mentioned above). Read the bottles at the drug store: you don't need an antihistamine, unless it's allergies. JUST the decongestant is what you need, and that's when I go for the Sudafed or other pseudoephedrine.
===========================================
About the Hopkins appointment, it never hurts to go hear what the doc has to say. You may disagree, but at least you will hear it from the horse's mouth.
Definitely tell the doc you are or have taken doxy of ___ dosage and how many times a day for how many days. I doubt very much that the doc will ask you who prescribed it. Doxy is the USUAL drug to give for Lyme, at least by nonLLMDs, so the JH doc probably won't care. If he presses you, just look blank and say 'Gosh, I just went blank on his name.' He's not allowed to torture you or anything, and I doubt he will even ask. He may ask what dose and for how long you took it. Do tell him that.
I'd go to the appointment with the idea that I will tell him how I have been feeling for about how long, that a doc put you on doxy for X days, and you're still not feeling any better, and take it from there.
I'm just guessing at all this, but since you asked for ideas ... there you go! Hope you feel better soon. :)
I called and left a message earlier today regarding my sinus infection, but no call back. Of course it's a holiday weekend, so my earliest hope for aide will be Tuesday:(. Anyone have any homeopathic remedies for sinus infections that could give me relief? It's mainly the pressure that is overwhelming me. I started glutathione today, but I don't know how long it takes to feel a difference from it.
PS got a phone call 2 days ago. infectious Disease at Hopkins wants to see me Wednesday. Do I dare hope they will be willing to help me? Also, to protect my LLMD, what do I say when I'm asked who gave me the doxycycline for 2 months and why?
PS got a phone call 2 days ago. infectious Disease at Hopkins wants to see me Wednesday. Do I dare hope they will be willing to help me? Also, to protect my LLMD, what do I say when I'm asked who gave me the doxycycline for 2 months and why?
ditto mojo's suggestion.
then if the LLMD says go see a regular doc, you know it's fine to do so.
if the regular doc tries to take you OFF you Lyme meds, however, I'd check with the LLMD before doing so.
then if the LLMD says go see a regular doc, you know it's fine to do so.
if the regular doc tries to take you OFF you Lyme meds, however, I'd check with the LLMD before doing so.
Hi,
I would call the LLMD. She may suggest a switch of an abx for you. I am lucky that my LLMD is a family practitioner so I call on her for everything.
I would call the LLMD. She may suggest a switch of an abx for you. I am lucky that my LLMD is a family practitioner so I call on her for everything.
I remember reading that Lyme and sinusitis go hand in glove according to "Lyme" rules----- Lyme can present as almost anything. a LOT of people on other forums complain about that.
But just because we have Lyme doesn't mean that we can't get 'ordinary' woes. Are you blowing green gunk out your nose?
An ENT I saw when I complained about a possible sinus infection asked that question. Perhaps that means something.
But just because we have Lyme doesn't mean that we can't get 'ordinary' woes. Are you blowing green gunk out your nose?
An ENT I saw when I complained about a possible sinus infection asked that question. Perhaps that means something.
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