Quick Survey about Sarcoid and Bacteria

• By lwkmd1
• Posted September 6, 2008 at 3:01 pm

Sarcoid is a disorder that causes injury to you lungs and your ability to fight off germs.
Hence, one is predisposed to infections. So it's not uncommon that one would develop infections, bronchitis and pneumonias in their lungs.

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• By annaderol
• Posted September 6, 2008 at 4:28 pm

Hi, when I take Klaritromicin ,another antibiotic I feel very well ,,and I'm not losing my voice everytime I talk,but when I stop antibiotic is comming cough and dispneea.
Know I take prednisonum.

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• By nickmd
• Posted September 6, 2008 at 4:44 pm

Some medical researchers (Dr. David Moller M.D. a sarcoidosis expert from JohnsHopkins Medical Center for one) have done research that suggests that sarcoidosis may be triggered by a bacterial infection. (Other researchers have wondered about rickettsial & viral infections)

The question that has not been answered is: "Is the infection still present? and if so, should we be treating the infectious agent? That is, maybe the immunosuppressive agents (like prednisone, Methotrexate,etc.) keep the inflammation in check, but when we stop taking them does the infection start the inflammatory process all over again?

This may be an explanation for those who have stopped prednisone or other anti-inflammatory meds and had their "sarc come roaring back."

Research continues but is slow in the Sarcoidosis area, hopefully Bernie Mack will not have died in vain, but his death has informed the research community that this is still a very severe problem. Of course money and intelligent direction of the research moneys are both important.

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• By gonenatural
• Posted September 7, 2008 at 9:18 am

Hi Nickmd and Everyone,

I placed a recommation on this because I just love what Nick wrote and I agree. How many times in our life have we had some type of viral infection? Now I have yet to see 1 person on here that has never been sick in their lives. I've had several different viral infections and always wondered, how do the drs know that they infection is really gone? Think about some of the scenerio's you sci-fi movies. Isn't really possible? I think so. I think the germs are still running around in our organs and blood and at times suppressed for what ever reason, one is meds, one may be the way we eat until the germs catch on and remold themselves.
Is this out there, I mean, like out of our minds crazy?
Or is this really possible?
I think Nick has something there.
Thanks Nick and Everyone else who is suffering to a care taker.
Gone Natural

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• By RuthfromOz
• Posted September 8, 2008 at 9:24 am

I guess you just might have to look at the possibility that you can get sick with one thing and have a second, unrelated disease at the same time. I have chronic sarcoidosis. Since diagnosis I have been on antibiotics a number of times for a variety of reasons - in fact I have just finished a course of antibiotics to fight an infection in a tooth that needs work. Being on the antibiotics did not make me feel better - in fact I came down with a cold, so I felt worse.
It's quite possible that you had a bacterial infection in your lungs that has absolutely nothing to do with your sarcoid except that they were together in the same place at the same time, like strangers in a shopping mall, and your lungs are the mall.
I'm not saying that Sarcoid is or is not caused by a bacteria. I don't want to get into that debate, that's for others to argue about somewhere else!
What I am trying to say is that just because we have sarcoidosis, or any other disease, it doesn't mean we can't have bacterial, viral or any other illnesses at the same time. That would be like saying because you've got tinea, you can't get a coldsore. They're unrelated, but can quite happily co-exist and make our lives miserable.

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• By llinypooh
• Posted September 8, 2008 at 7:05 pm

I keep getting bacteria infections - antibioctic I use is Bactrim

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• By priscurl
• Posted September 9, 2008 at 4:36 am

If you have sarcoidosis you can be anergic which can predispose you to infection and cancer.

Co-infection in sarcoidosis is common not only from anergy, which prevents the body from mounting an appropriate response to pathogens or allergans, but then the docs go and suppress the immune system further with immunosuppressive drugs.

As Nick above said, evidence is mounting from many sources that sarcoid itself could be an infection. This could be why some people experience a worsening of symptoms when they take antibiotics for other reasons. TB is an infectious granulomatous disease with many things in common with sarcoid. It is treated with antibiotics. TB patients have to be under observation in the early stages of treatment because they feel worse on the antibiotics. If they weren't watched, many of them would stop taking antibiotics too early and end up spreading the disease around or getting much, much sicker.

Pris

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• By jmaze
• Posted September 9, 2008 at 9:31 am

Thank you to those who have responded. I understand that sarcoid affects our entire system. But I had heard about the study on the relationship with sarcoid and bacterial growth or infections. Can't help but wonder if there is something to that. Thats partly why I was wondering how many others were actually told by their doctors that they also had bacteria present or bacterial infections. The Avelox seemed to help. I wasn't coughing as much, had a bit more energy. Yesterday however I started coughing again, and started feeling so/so. Maybe it is a fluke. We will see. I see the doc tomorrow.

Ruthfromoz - I agree with you completely that we cannot assume that every ailment we have is related to sarcoid. We can get colds, virus's etc.. and it has absolutely nothing to do with the sarcoid, but if we don't pay attention to our bodies and investigate ourselves, maybe we will miss the important clue that could provide an answer to sarcoid or at least a step in the right direction. The sarcoid for me this time round has been much worse than it was 9 years ago when first diagnosed. I have to wonder if the bacteria is the cause of it being worse. I was only on avelox for 7 days. I don't like to over use antibiotics because I might really need them some day, but possibly it would have helped to be on the avelox for a longer period. Don't know, just wondering since I'm not feeling as good today as I did 3 days ago. I'm not on any sarcoid meds now and I don't intend to go on any in less things get back to where they were 2 weeks ago. I was so tired and breathless before the broncoscopy that I was ready to go on any thing they suggested just to feel better. I'll keep my fingers crossed that I don't get back to that point again. God bless to all.
jmaze

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• By Elzie
• Posted September 10, 2008 at 8:21 am

Me too, everyone. That is how I just got diagnosed. Just got over a two or so month bout with pneumonia, two weeks of prednisone for a misdiagnosis of asthma, 5 different antibiotics, and still don't have a voice. My diagnosis came from the xray for pneumonia.

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• By Heffner_mr
• Posted September 11, 2008 at 9:04 am

Hello,

When I was diagnosed with sarcoid, a week or two later I was told I also had Mycobacterium avium. The doctors also recommended not treating the Mycobacterium avium unless I started showing complications from this.

My research into Mycobacterium avium indicates that nearly all of the Mycobacterium strains are typically very difficult to treat as they have a unique cell wall structure that makes them highly resistent to most treatments. Apparently TB is a form of Mycobacterium.

My research has also convinced me that there is a causal link between my Mycobacterium avium and the sarcoid. However, there is presently no scientific proof of that.

Best wishes to everyone,
Mike

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• By jmaze
• Posted September 13, 2008 at 10:04 pm

Well I took my 7 days of antibiotics, felt some better, but not completely. A couple days went by and I started feeling like I had before the antibiotics. Went to the doc on Wed. He chose not to put be back onto any other antibiotics. Don't understand why. He did however put me onto a 2 time daily nasal cleanser. Said my sinus were swollen, etc... and that could make my breathing worse. Said that he didn't see any indication of sarcoid in my sinus's however when he did the broncoscopy. Only came up positive in my lungs. I've used the nasal cleaner for 3 days and it does help my head stay clearer but otherwise no difference in my breathing. I'll be having another CT the first week of October. See how things look then and take it from there. But I really, really don't understand why the antibiotics seemed to help some and then after going off them I went right back to the same problems.
God Bless to all,
jmaze

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• By Dawn1973
• Posted September 14, 2008 at 8:51 am

Hello jmaze

Have any of your docs recommended that you get the pneumonia vaccine?

I used to get pneumonia every few years since age 5 and land myself in the hospital. UGH! no fun! Since I have started getting the pneumonia vaccine, which I believe protects you from Bacterial pneumonia but not viral (or vice versa, but I am pretty sure it is for bacterial) I have stopped getting pneumonia. I still get bronchitis every year but it never turns into pneumonia. It still gets bad and usually requires 2 cycles of antibiotics to get rid of, generally I take a variety depending on what my doc feels like handing me that day, varying from 10 days Levaquin (which I cannot take for more than 10 days or it makes me sicker than what ever I am taking it for, possibly due to the liver), Some form of Erythromycin, or some type of Cipro antibiotic. Whatever is strongest that my insurance will pay for at the time.

I highly recommend that anyone who has not gotten the pneumonia vaccine ask their docs about it. I have been pneumonia free for 7 years now! (amazing!)

I also get the flu shot every year too, and so far it seems to do the trick. My kids get the flu, and I don't end up with it, even taking care of them. I have also read that there is a new vaccine coming out for Shingles. It is supposed to be for people over 60, but I am wondering if it may also be available to those of us with immune disfunction issues. Worth looking into!!!

Be well!!!

Dawn

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• By jmaze
• Posted September 17, 2008 at 9:40 pm

Hello Dawn;

No, so far all my doc has said is have another Ct and then come back in to see me. I'm almost scared to say this, but I've noticed yesterday and today that although I still have some breathlessness, I have a more light, energetic feeling about myself than I've had in months.
Dare I even hope its going back into remission again??
I do plan to ask the doc about getting at least the flu shot if not the pneumonia shot. I don't generally get the flu shot but I mentioned to my husband just last week that I would see about getting one this year.
Have a great week.
jmaze

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• By Paradox
• Posted November 9, 2008 at 8:24 pm

jmaze,

sounds to me like you happen to have sarcoidosis and had an occult pneumonia at the same time. Let's see, short of breath, fatigue... yep all symptoms of pneumonia too.

priscurl,

If sarcoidosis causes anergy (and I've never seen a reputable case of this) then why would those patients need immuno-suppressants since they don't mount immune responses which is what causes the symptoms of sarcoid in the first place. The logic just doesn't follow. More likely the well known case of being in an injured or ill state tends to leave one a bit more predisposed to secondary infection, and this happens regardless of wether the first disease is sarcoid or the flu.


Nickmd,

Taking anti-inflammatory agents like prednisone and even methotrexate will cause a bit of rebound when you stop them, that is a given. More so, if you check the scientific literature on sarcoidosis you notice there is no cure, that means that these medicines only treat the symptoms. It's a bit like taking Robitussuin for that cough when you have a cold, neither treatment cures the disease at the root of the symptoms, and the prednisone actually works better than placebo, which Robitussin can not claim.
So.... if you are taking the medicine to keep the symptoms at bay while awaiting spontaneous remission, how do you know if you are in remission? There's the simple question. At this time the only apparent answer is a trial wean, and if the symptoms "come roaring back" you aren't in remission.

And for everyone out there....
I completely reccomend the flu shot for everyone with sarcoidosis who doesn't have a direct allergy. For those of you who like to invoke the name of Bernie Mac here's a real fact for you, he died of pneumonia. Call it a complication of sarc or not, but he died of pneumonia. Guess what the number one killer in all the flu epidemics was.... pneumonia. Do you really want to go into flu season with two strikes against you?

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• By jmaze
• Posted November 9, 2008 at 10:07 pm

Hi Paradox;
Always look forward to reading your opinion on things. When I finished with the alevox (drugs) I felt quite a bit better. Idid another CT and it showed some improvement to the one done 3 months previous. Unfortunately when I saw my doc 2 weeks ago I told him I was starting to slightly feel worse than I did at the time of finishing the meds. Now, I'm doing everything very slowly. If I overexert myself I pay for it for at least 2 - 3 days afterward. By paying for it I mean lack of breath and tiredness, sometimes some chest pain. Breathing in isn't so bad, it's breathing out that does me in. I'm not on any medicine. My doc is a wait and see type. I agree on the days I feel good and totally disagree on the days I can't breathe. I'll see him again In December. I have had the pneumonia shot. By the way, if you get the pneumonia shot, how can you still get pneumonia? Haven't had the flu shot. Not yet available on base. Have a great week.
JMaze

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• By Paradox
• Posted November 10, 2008 at 2:07 am

JMaze,
Based on your descriptions I have some suspicions of non-sarc, but not uncommon things. I think it best to leave it to someone who can do the exams to sort it all out, though (and I think it shouldn't take a bronchoscopy this time).
About that pneumonia shot:
It is a vaccine that targets several of the most common strains of bacteria that cause "community-acquired-pneumonia." Basically, since so many different types of bugs can cause pneumonia and there is no real way to put them all in a single vaccine they took the culprits found to be the cause in around 90% of cases of pneumonia that people got outside of a hospital (because the ones you get inside the hospital are a whole different breed of mean) and made a vaccine for those. The vaccine is only good for the bugs it covers and isn't 100% effective for them either, but it will protect you better and at least diminish the symptoms of what you have been vaccinated against.
Flu shots should be becoming available if not already and I highly suggest them to everyone with sarc or who has direct contact with someone with sarc. Don't buy into the myth of getting it later so it "lasts longer." The immunity won't wane during this flu season and won't be worth having next September anyway.

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• By pamk
• Posted November 10, 2008 at 8:26 am

Hi Dawn, the shingle vaccine has come out and I got it a few months ago. Even though my insurance wouldn't pay for it as I am not quite 60 yet, I felt it was worth getting although not cheap. Why would I want to take a chance and get the shingles, another awful malady, while I am waiting to turn 60!? A lot can happen in 3 years. So I went ahead and got it. Maybe there are some insurance companies that one could reason with, like it is better to pay for someone to get the vaccine instead of the medical treatment for the shingles. Once you get the shingles, the vaccine is ineffective I've been told.

Jmaze, I too was diagnosed with pneumonia 3 years ago and went through several rounds of antibiotics. A year later a CT scan showed sarc. The antibiotics did eventually help as my coughing subsided but the pain in my lungs and shortness of breath remained and has to this day. I also see from the last CT scan report scarring in my lungs so who knows how long it has been there. Anyway I have wondered at times if there is any correllation between sarc and bacteria but again it could just be coincidence as well. Sarc is an auto-immune disease after all.

I am seeing a sarc pulmonologist in Jan. who is about 4 hours from here to get a real expert's opinion on what is going on in my lungs. It couldn't come soon enough as the pain in my lungs is pretty constant at this point. I will keep you all posted.

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• By bags
• Posted November 10, 2008 at 8:38 am

Hi Paradox,

I would like to take this opportunity to thank you on keeping us on the straight and narrow with all the 'theories' floating around. Not to say that one should stop theorizing, but it has to be with logic and science.

Anyway, what I was interested in your reply was the fact that anyone who comes into contact with a sarc patient should seek a flu shot. Should I therefore ask members of my family to do this? I am concerned, because my wife is in contact with quite a few people at a day centre that she helps to administer plus she has me at home. I have also noticed that my daughter who is only eleven has developed a permanent cold. She has had the sniffles continually for past three months. Would appreciate any thoughts on this.

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• By blondinette_27
• Posted November 10, 2008 at 10:13 am

My daughter was diagnosed at the age of 2 and she had symptoms of sarcoidosis when she was only a few months old. We have no idea what caused her sarcoidosis, and it certainly is not because she was exposed to too many viral or bacterial infections. In her age group, sarcoidosis is not even a lung disorder, it usually affects the joints, eyes and skin, so nothing explains why she has it and why there are two forms of sarcoidosis.

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• By quiltmess
• Posted November 10, 2008 at 10:30 am

I had my second pneumonia shot last year in Nov. and in Feb. got pneumonia. I asked why and like already stated here it doesn't cover it all. However, I noticed that I got better quicker and it did not hang on . It was the first time in 6 years of not having pneumonia. So yes I feel it helps. I have a friend who is a nurse and she called me two weeks ago and said to go get the flu shot now!!! She said they are prediciting a bad winter of flu and she wants me to be safe!!! So did as she suggested.

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