Dear fellow Sjoggies,
I feel like crying now and maybe I will. (I might be able to make some tears) I'm sick of seeing doctors who disagree with each other on treatment and even my diagnosis! I'm tired of paying co pays and not getting any real help, but then I have never been so sick in my life and I HATE that I actually need these pompous people!!!!!
I've been coughing up thick disgusting garbage since January. I literally have chronic sinusitis with painful inflammation with resulting fatigue and it has just become a way of life. My lungs hurt and I'm on Dulera and all the asthma meds. This makes my asthma worse. I do what I'm supposed to every day and I take a ton of supplements and meds. I keep my appointments and I always pay my bills even though I've been too sick to work!!
I ran a fever and felt worse at my son's wedding in May. (I use sinus rinse twice daily and take NAC with the 12 hr mucous thinner twice per day). I drink lots of fluids and do what I'm supposed to and I feel miserable.
I was put on a Z pack in May by my asthma doctor, and when I was finished I had a regularly scheduled appointment in Iowa City with my ENT. My sinuses are complicated! I told them I thought I just had chronic inflammation and I didn't think I had an infection. The ENT actually scopes my nose out (internally) and told me I had a chronic/acute sinus infection that was resistant to Z pack. He cultured it and put me on three weeks of Augumentin.
Even though I take probiotics and eat yogurt, etc., the antibiotics are still a real trip on my system, if u know what I mean.
Meanwhile I don't feel any better except the mucous is a prettier color. Coughing, pain, and inflammation. I see my asthma doc today for a routine appointment and tell him what happened. I also asked him for a little burst of Prednisone which he agreed that I probably needed. He then refused to prescribe it to me!!!!!!
Told me he disagreed with the ENT in Iowa City and that I should call the ENT in Iowa City and ask for the Prednisone!!! He told me he wouldn't order it because I'm still finishing up the antibiotics. (He didn't think I had a sinus infection but he is not an ENT.
Okay, I can live with that. BUT!!!!! He then went on to say that he wasn't sure that I had Sjogrens at all but that I might just have complicated sinuses!!!!!!!!!! What???????????
I told him emphatically that I DO have Sjogrens and that it upsets me terribly when a doctor even questions this!! I told him that if anyone tried to take my Plaquinil or generic Evoxac away that I would "have a fit!!!!!"
I rattled off all of my symptoms which were not sinus related including overwhelming fatigue, muscle pain, joint stiffness, , serious lack of saliva, horribly dry skin, eyes, GERD, Esophagitis, Barrets esophagus, etc. this man sat there with his lips pursed and would not look at me. Then he ended with a look on his face which said it all - the look that says you are grossly mistaken or "I just don't flat out believe you."
Then he told me I should just go to my Rheumatoligist. (Except I don't think my Rheumatologist will treat my asthma or my sinuses.)
Am I that bad of a patient? Must be. I was just thinking today before I even saw him about how the only people who truly understand are you people here on this forum. Thank God for you or I could see me being suicidal or ............... Homicidal! Lol. ( not really)
It is so frustrating! I'm sure he just charged my insurance company 100 bucks and then I had a 20 dollar co pay! And for what!!????? Just to insult my intelligence and belittle my illness?
Then he says very sweetly to me: "I don't pretend to know everything. I do the best I can for my patients and if they aren't happy, then they don't have to come back."
What??????!!!! I am so hurt and angry. If this man were my only doctor I still wouldn't be diagnosed and sicker than a dog!!!
Thank u for letting me scream! I'd like to say I feel better but this is going to take awhile for me to calm down.
Thank u always for your advice, friendship, and support! I always feel that I have someone who I can communicate with who won't insinuate that this is "all in my hysterical little head!"
Kathy
I am so, so sorry that you are suffering so much. I can relate---haven't had your problems but some close to them. The first thing I would advise you to do is to find a patient advocate at the clinic or hospital and explain what is going on.There are also omsbudsmen out there that are usually listed somewhere in the hospitals. You can can call the social services department at the clinic or hospital to see what can be done.
One of the first things I would demand is an acid fast culture of your sputum. This checks the bacteria in your sputum for some really weird stuff that seems to love to grow in strange places in autoimmune patients. It does take two months for this blood culture to grow as many of these bugs are slow growing. The other thing I would demand is to have blood work done to check for immune deficiencies. This is very common in people with autoimmune disease and prevents people from fighting off infections.
Is there a chance that you are loading up on some OTC supplements that might not be helping you and are becoming a burden to your health care. It is such a trial to do all the irrigations, eye drops,etc. I assume that you are using distilled water for your irrigations and that you are boiling it. I boil enough for about 4 days or so and store it in a gallon distilled water container in the refrig. I warm it up in the microwave slightly using a glass cereal bowl or pitcher. I then pour the water in a measuring cup with a pour spout and add the salt/soda mixture and pour into the quirt container.
I have been doing this since 2000 and several times I had such bad infections that I would have to irrigate 6 times a day or so. There is also the chance that your ENT can order antibiotic nasal irrigations to be used several times a day.The cultures of the pus has to be done to find out which antibiotic to use. The doctors can order this through compounding pharmacies that are sprouting up all over the country. I am on the 4th compounding pharmacy that my ENT orders from. They even ship overnight with meds shipped in ice packs.
There is also another way to distribute meds into the sinuses and this is a naso-neb. It is a device that holds saline and antibiotic and you place the device in each nostril and inhale. It works really well. Moistens the nasal passages and sinuses and helps to cut down on the infection and mucus. It seems that your ENT needs to be questioned more to see if he truly understands the scope of your problem.
The bad thing about dealing with this mucus all the time is that we have to keep changing our treatment as the symptoms change off and on. I suffer with mine a lot. I will have some time almost every day that it doesn't rule my life, but my water bottle and Kleenex box are my constant companions.
I have had so many infections that I have lost count and used to be on around 7-8 antibiotics a year. I was finally diagnosed with low t-cells and that is why I didn't fight off the infection. I have been on many different types of nasonebs or nasal antibiotic irrigations and have had 3 in depth examinations under anesthesia at the hospital by my ENT. He is very conservative and doesn't make any sudden moves cause he doesn't want to make me worse. I will be starting on Muropirocin antibiotic nasaql irrigations the end of this week. This is the same as Bactroban ointment. I have had MRSA again the last month and got rid of that and now have something else.
Just hang in there and find new docs if you need to. Any doc that doesn't help or at least head you in the right direction or to a different referral needs to be retired to the sidelines. It is your time, energy and money and you deserve to get the right treatment. If you are down in the dumps you should see a psychiatrist and get treatment for depression. Don't depend on the FP for that as they don't understand depression very well much of the time. Chronic illness causes depression and you don't have to apologize for it. Also, Sjogrens patients have a high rate of anxiety and depression and are able to cope and sleep better on antidepressants.
I wish you much success in this endeavor. Hang in there and keep positive. I will keep you in my prayers. Please keep us updated on your condition. Irish
Dear Kathy,
I wish my brain were working properly today so I could give you some great advice. But it isn't, and I just can't. :-\
I do understand what you are saying and want you to know that I think you have been treated incredibly poorly. If you are able, it seems to be time to find a new asthma doctor. Jerk!
You go ahead and vent any time. We hear you! I think it's shameful how badly some doctors behave, like we haven't already got more than enough to deal with. I wanted to say something intelligent, but my brain in MIA. Take care, Kathy.
Thank you, Irish!
My ENT actually does a fiber optic exam where they can look deep into my sinuses. This guy is highly respected, a professor at the university; has written books and is very highly recommended. I can watch what he is seeing on a TV screen in the office. He has a screen and i have a screen.
He actually went into my sphenoid/ ethmoid (sp?) sinuses and took a direct culture. It is impressive. I could SEE the infection along with all my pretty little nasal septal perforations. It is impressive what this man can do. (The difference between University and my little home town ENT). There is miles of difference between the equipment alone!
The ENT has referred me to an immunologist at the University because he says I could have immune deficiency. The ENT did all kinds of cultures and gram stain. Tested for just about everything. Actually, this ENT is miles above my little hometown asthma doc.
My asthma doc is also an immunologist but he really just does allergy testing. My ENT shares info with this man and I don't think he liked what he was reading. My asthma doc was almost in disbelief that I was referred to University Immunology for work up because of possible immune issues. He says, "I tested you for allergies so why is he referring you?" Then he says that the university immunologist will do a lot of tests and just "stir things up." He acted like it was a waste of time!!!!
I think what he is really angry about is that this University Dr. disagrees with his treatment and I think his nose is out of joint!
I can't get into immunology until October because they are so busy.
Well I'm glad I talked to you cause I feel better about going to see this immunologist. I plan on calling ENT office tomorrow and ask them if they will give me a little prednisone. I bet they will.
I just hope my asthma doc gets over this. You know he really has let me down but I've always thought he was a nice guy. I think he was having a bad day. Right before I went in, one of his patients was coming out and she refused to make a follow up appointment with him. She was angry and loud, but that had nothing to do with me!
Unfortunately I need him for my asthma meds. My internal med won't refill my asthma meds because she knows I go to him. They don't like to step on each other's toes.
If ENT won't give me prednisone then I will call my Rheumatologist and ask.
Thanks for your really helpful advice. It makes me more confident to see this new doc in Iowa City. After awhile I don't know what to believe.
I am taking an antidepressant and I do need it. I do think I need some help occasionally with sleep and my internal med is reluctant to order anything. It wouldn't hurt for me to see a professional psych. I never have but I've never faced these issues before and depression and anxiety do go hand in hand with all of this.
I'm just tired of doctor appointments and I wish I was well so I could tell them all to go fly a kite! Unfortunately, I will need these people for the rest of my life. Now........................ THAT is depressing!!!!!
Kathy
Thanks Carebear!
Also, Irish, I forgot to add that I do boil my water on top of the stove and I use it within two days for my sinus rinse. I haven't refrigerated the water, though. I think I am being very clean about it all and I keep all my equipment clean. I know if I microwave my rinse system for 60 seconds it is supposed to kill germs.
I don't do this all the time. Sometimes I just wash it with soap and hot water.
I will keep u posted. I feel calmer after venting so thank u. I feel dry but I'm having a glass of wine and I might even have another one!! Lol
My husband just bought me an ice cream malt😃. That always helps!
Thanks!
Kathy
The ENT sounds like he is with the program and that is great. The one reason you might have problems getting the prednisone is because it does increase the chance for infection or makes it harder to get over infection when you are on antibiotics.
I have had problems with that myself. It is a double edged sword. Boy, I could use a malt about now!!! Good luck. Irish
I had my disease a frighteningly long time before it was diagnosed. Here's what I know from being on the doctor merry-go-round for a decade before I had anything to show I wasn't crazy other than fainting spells, chronic infections and severe chronic pain:
1) Just because someone took the hippocratic oath doesn't mean they know how to speak to a patient with any compassion. They might think it's a relief for them to tell you you might not have your disease. It's a messed up thing to think but if you think about it doctors want to cure people, they can't cure us so the best they can hope for is we are misdiagnosed and have something lesser than an AI.
2) When advocating for yourself is met with condescension instead of understanding cross that doctor off your list and warn other AI/invisible illness patients off seeing them.
3) We live in the worst industrialized country in the world to have a chronic illness. Our system is set up for expensive effective acute care - like an ER visit. If you need to regularly maintain your frail health through doctors appointments and various drugs the cost burden here is the highest in the world, exponentially.
4) I make a specific complaint list for every different type of physician. Then I ONLY address those complaints with that physician because really exploring my illness is too much for most of them. I trust only the rheum to comprehend how all these disparate symptoms interact with one another.
Kathy57.. so sorry you are going through a long bout of unresolved symptoms.
Sounds great that you got the ENT on board. Do you have a follow-up with this Doctor?
Augumentin contains amoxicillin. I had to take a course of amocillin and developed strong abdominal pains. One of the possible side effects.
Here is an article by Dr. Fox. In sections V and VI he discusses nasal, mucous,
V. Upper Respiratory Tract Dryness and Sinusitis
VI Problems Involving Skin, Lung, Heart, Kidneys And Other Organs In Sjögren's
C. Nasal Dryness, Sinusitis, and Upper Airway Dryness
http://www.dry.org/fox20020816/guide.htm
I know you already know most of what is in article.. but, it is reassuring to see it in print by a Sjogrens Specialist with expertise due to decades of dedication with this disease.
Kathy, I'm so sorry that you have to go through all this. As if we don't have enough on our plate just dealing with our conditions.
I have had lifelong sinus problems and have had 3 sinus operations for polyps and had Fess procedures where holes
were drilled to let the mucus drain and I must say that after the last one thing have been aso much better, I aslow sinus rinse morning and evening.
Another thing, have you had a CT scan of your lungs? I was being treated for asthma until a CT showed that I in fact had Bronchiectasis. Very often Sinsus problems and Bronchiectasis go hand in hand. Just a thought.
Hope things get sorted out.
Kathy - Sorry to hear of your recent bad experiences. Sounds like you're on the right track with your ENT at the university. If I were you, I would find a new asthma doctor.
Quietdynamics - Thank you for posting that thorough and informative article.
Shame on that Dr. who treated you like that. I'd find a new Dr. It sounds like you need a fresh set of eyes and ears to get you well and treat you with the dignity and respect you deserve as their patient.
Thanks everyone😃
Quiet dynamics, I do have a follow up appointment with my ENT but not til October. I re-read my instructions and it does say to call sooner if experiencing problems. I wasn't able to tolerate the Augmentin for more than a week (abdominal upset) and they were kind enough to switch me to Ceftin, which I seem to tolerate much better.
Thanks for the informative article. I think my asthma doc needs it more than I do! Lol.
I'm afraid I'm going to have to let him go. I hope my internal med will pick up the slack. Unfortunately, they are in the same office building and the same "group."
I don't want to become the "difficult" patient. I think he would be happy if I did leave. He makes me so sad because I remember when I was REALLY ill and he acted like I was a pain. I remember him telling me, "you just have a little virus! You will feel fine in 2 or 3 weeks whether I treat you or not." I had felt so sick for months - and off and on for years!! I remember going to my car and just dissolving into sobs with very little tears.
That was right before I was diagnosed. I KNEW there was something terribly wrong with me and was so scared! I was having trouble just functioning and so afraid I would lose my job because I felt so ill that it was hard to function.
I went to this man for help and poured out my soul. He basically told me I was making a mountain out of a mole hill. However, I kept him as a doctor (because I felt I needed him for my asthma) and because he did apologize to me after my Rheumatologist diagnosed me.
He actually gave me a hug and told me he was sorry then. I believed him or WANTED to believe him. He makes me question myself and my very sanity depending on what day it is. The bottom line is that I SEE that he really doesn't believe I have a serious illness and he knows nothing about Sjogrens. I know I need to find a different doc.
I just want to avoid confrontation and wait til I'm feeling better. Which may not be for awhile! It helps to understand that it is not just me that this has happened to. I am not alone but then it makes me angry that ANY of us should have to go through this B.S. I keep telling myself that his ignorance (and so many others) is NOT personal. But............................, it sure FEELS personal!
Thanks everyone for your support. It means more than you could ever know😃
Kathy
I'm so sorry. Dreadful. Some doctors are so arrogant. I can tell you that IMHO, most were taught that Sjogrens is no biggie. And I suspect some think it's over diagnosed. I don't know what to make of it all, but it's upsetting...to say the least.
One thing you might do is concentrate on your symptoms, esp. when you encounter a doctor who doesn't have it all together with reference to Sj. Syndrome.
I get a lot of sinus infections and one doctor told me something profound. He said that many of the antibiotics will NOT work when treating a sinus inf. because it won't penetrate the sinus. Some of them if they work, it's more luck than anything. He said that one,that almost ALWAYS works is Augmentin. And knock on wood, Augmentin works very well for me and others I know. If you have a sinus or upper resp. infection, you might need this antibiotic.
Also, I swear by Oil of Oregano tablets helping my sinus and upper respiratory tract. You sound like you are in a bind, so you might want to at least think about trying it. I take with a little food because it can upset the stomach.
I also use zinc losenges. Zinc pills definitely upset the stomach, so I don't mess with those.
Try to talk with others who understand. Try to find more compassionate doctors and for the time being, just work around,this shmoo who was unkind to you. I have several docs who think Sj Syndrome is a joke. I never use the words "Sj. Syndrome." I say I have auto immune issues, dry mouth, dry eyes, sinus problems....whatever...just by passing THEIR issues.
I'm sorry your feelings were hurt. One would think someone in the medical field would be more compassionate.
Blessings.
I echo everyone else and am so sorry this doctor treated you so poorly though.
I do have one question. What symptoms are you wanting the steroids for? Not to excuse anything else about this doctor but if it is not for asthma related issues it is understandable that he did not want to do it. We see so many doctors and they are so specialized that it can be frustrating. But, we need to be sure we are asking the proper physician for what we need.
Again, none of this excuses anything else about his behavior but just wondering about this one aspect.
Thanks Nomad.
I just recently purchased oil of oregano drops. They are 25% concentration because 100%, I was told, would be too strong. I did that after reading about it here.
I can put one or two drops under my tongue and not too bad. Do u know how much I should take or how often? Should I just take it when I'm sick? Ha ha! Which is everyday now!
Thanks again!
Kathy
Rnathans,
I asked him for the prednisone for my lungs which feel inflamed from all the coughing and I told him I've had to use my PRN nebuluzer much more frequently because of it. Also, I told him my sinuses and whole upper respiratory tract feels inflamed. He told me that he knew prednisone would help me, and didn't think that the antibiotic would. He said a few disparaging things about ENT's and how no one should ever be on an antibiotic for more than 10 days!
He told me he wouldn't order it for me because then I wouldn't understand if the antibiotic or the prednisone helped. He felt that if I felt better on it, then the antibiotic might take the credit for the prednisone? Does that make sense? We talked a long time and he said a lot of things. He's probably going to charge me double!
I have to admit that I feel that all of this is really BAD inflammation because it has been so longstanding. But then it is hard for me to argue with my ENT who tells me that he can see an infection. He makes perfect sense to me.
I told my asthma doc that I just want relief from my symptoms and I didn't care how. I have six days left of antibiotic and my sinuses positively ache. I'm still coughing up garbage but I honestly don't know what it is! I'm just miserable and tired of the same and wondering if this will just be the rest of my life?
Couldn't it be that I have a longstanding infection and inflammation?? I'd like treatment for both and I put a call into Iowa City. They are going to have the nurse call me back. Now I feel like a royal pain in the --ss. I've waited so long for it to go away on its own, but who knows when that will be?
I realize in the scheme of things how unimportant this sounds but if I could just get some relief, I'm sure it would have a big impact on my quality of life.
(Okay I'm done whining! lol).
Have a good rest of your day!
Kathy
Kathy, I use Gaia brand Oil of Oregano liquid capsules. They come in a green and white box. It says to take 1 capsule 2 times a day between meals.
I, personally, only take them if i am in a high risk situation (around children for example) or if my sinuses feel "off." I also take them shortly before traveling and during travel. I don't take them daily, but somewhat regularly.
Also, I must take them with a little food.
I think they help a LOT.
I also sometimes take a zinc losenge....when around sick kids, etc.
I have had great luck with the Augmentin, so if there is any chance of infection, I would consider making an inquiry. Maybe do an antibiotic first and then a steriod!??! You know your body best though.
I haven't tried the regular oil or oregano drops. I really believe in these capsules.
Kathy, I do not think any of this sounds unimportant. And I understand now why it was reasonable to ask him for steroids. Cannot help much though as my problems are mostly neuro and gastroparesis. So far my lungs and sinuses are relatively okay. Hang in there.