Those with sarc should be less prone to sickness ...??

so the theory goes like this, ........
if we have sarc, and sarc is an autoimmune disease, and that means our immune system are over active, so much so it attacks our own organs ...... then one might suppose that we we would not get sick as often because this over active immune system is going after bugs and viruses with vigor.
(This theory is based on not being on any drugs like prednisone or methx, etc, and is regarding the time before "active sarc" slammed us)
I know for myself, for many, many, years, I very rarely ever got sick, I never missed work, until full blown sarc hit me. I thought it was my attention to excersize, eating right and taking vitiamins that kept me well. When sarc did hit, I was down for 3 months

However, I'm going to bet with most sarc'ees, thats not the case, so how about it, before you came down with full blown sarc, were you always healthy???

(((the inverse could be true as well, that most everyone got sick as much as the general population, if so it may suggest that sarc is not an auto-immune disease, or at least its a variation of it)))

Please respond, everyone weigh in about your experience.
harmles2

By Cheesypops
Posted September 28, 2008 at 10:38 am

Only got the flu really bad one time. Other than that if I got a cold...it went directly to my chest. Never missed a day of work in 11yrs at last job. Always thought it was cig smoking that caused chest issues

By Paradox
Posted September 28, 2008 at 12:54 pm

What you have there is a conjecture, not a theory, and I can assure you that autoimmune diseases and sarc - or even infections, which cause a revving up of the immune system - do not work the way described. Inappropriate immune system reactions such as seen in sarc and auto-immune diseases does not cause increased immunity.

By Ericahope
Posted September 28, 2008 at 1:34 pm

I would love to live in your world. My sarcoidosis has been very nasty. I have had signs of this disease sense I was 14. I was diagnosed in 93. I have been in the hospital with it seems every little infection. The Doctors have to use the steriods to slow down the immune system and antibotics to help it. My flair ups are very painful. I do not remember any time in my life that just for a few months I have even the slightest relief of this nasty disease. I am glad to see that your sarc is nothing like mine. I am on 24h oxygen. I exercise when I can I take a huge amount of herbs and vitamins, eat right (stay natural) avoid processed foods. Still take the meds. I find that my sarc has a mind of it own. I do know that one of my doctors told me many years ago when they (an other doctor) told me I had six months to live. That 10% of me getting better was that he was my doctor, 10% was me taking my meds right, 80% had to come from me and my willingness to get better. I am still here and that was 15 years ago. I have amazed many doctors over the years with my belief that I was not ready to die. Believe what you have to to get you through. I am up for a lung transplant soon. Good luck.

By Cheesypops
Posted September 28, 2008 at 1:55 pm

You do understand...that if you couldnt see my post as being lighthearted it was.

It appears that a sense of humor helps some...and not others

By SouthShoreS
Posted September 28, 2008 at 4:10 pm

I had Mono when I was 12 and again at 27. I am wondering if there is a relation as far as the two are concerned. I haven't gotten sick often in my life, but when I do it's always something hard to kick. I have been feeling tired and run down for a long time but attributed that to the recent passing of my Mother from cancer this past June. I was recently diagnosed and am currently on a 90 day steriod escapade. This is very scary, not much information about it around. Hope you stay well.

By minerva
Posted September 28, 2008 at 6:34 pm

This is pure conjecture but the OP's post reminds me of something I read by nutritionist Adele Davis back in the 70's. She said that there were no such thing as colds or flu caused by germs or viruses. Rather the inflammation and fevers derived from these illnesses are the results of an over-active immune system fighting the toxins in our bodies.
Although she did admit to the fact that some illnesses were caused by bacteria or viruses most fell in this category.
I don't subscribe to her theory but I have to admit that sometimes something I thought was a cold or sore throat turned out to be a flare-up of ever present inflammations. I can tell when this happens because when I get a real cold or flu I also get a fever and it lasts much longer than what I deem to be a Sarc flare-up.
I'm just sayin'.

By grannylunatic
Posted September 29, 2008 at 1:08 am

I was healthy before the found me on the floor with hydrocephalus so bad the radiologist thought I'd had an anuerism, Pardon my spelling. I had Cytoxan therapy Thursday and words don't come out too good for a good 4 or 5 days.

By harmles2
Posted September 29, 2008 at 8:45 am

For nearly all of us, the word "theory" would also mean "thought, guess, assumption" and will work for this post and this discussion, ......... for Paradox, it fails grossly in the way I used it. (my appologies to him)

In my Random House dictionary the word theory has 4 definitions, >>> #3 is "an explanation that has not yet been proven true" and #4 is "a guess or conjecture", <<< thus for the English that 90% of us use in this group, the way I used the word is correct.

I respect Paradox posts, they are often filled with good info, and as a medical professional he seeks to elevate our understanding ..... while at the same time I'll reflect that a Dr's beside manner must include the ability to identify and relate with patients at thier level. Many of us are expereinced or degreed in a certain field, and yet we are quite comfortable in relating to those without our level of knowledge and at their level.
A professor will demand his students relate in the terms he desires "in the class room", yet outside the classroom he will relate in everyday terms with those around him. Going further, neither is the medical field "all knowing" nor any Dr or person "all knowing", ....... and this is a disease where there is much "unknown" and open mind will be critical to finding a cure.

I'm still interested in other sarc'ey responces and would appreciate hearing more from others, ........... in the years before you had sarc, were you always healthy or did ya get hit with the typcial amount of colds and flu? If nothing else I'll know if I'm "normal" or "abnormal"! (my wife is betting on abnormal!)

PS>> Cheesypops, its ok, put your "S" on! ;-), >> Ericahope, I said a prayer for you, I hope you do better in the future, keep fighting!

thanks!
Harmles2

By fishergrl29
Posted September 29, 2008 at 6:13 pm

harmless....to answer your question....I was hardly EVER sick before i got the sarc....im still not really "sick" too much now....other than the typical "can't breathe" thing....and the stupid legions on my legs that my dummy doctor wants to biopsy...why would she take a biopsy if we know what it is??

By serenityseeker
Posted September 29, 2008 at 7:55 pm

Prior to my tonsils being out at 35 ten years ago, I would get strep throat a lot, but that was it. I did not even have a primary, I used my GYN only. After I got my tonsils out, my strep went away and I was never sick .....people in my office are always saying...she doesnt get sick like us, she only gets the weird stuff. I often thought that I was abnormal because the flu could go through my office two or three times in a season and I would be the only one who did not get it. Now I am sick all the time, but again it is with bizzare things...never a cold or flu (oops...never say never)...

By Krissy
Posted September 29, 2008 at 8:27 pm

I have to say that I have always thought that I am different. Probably only as many colds or flu that I can count on my fingers in the whole of my life. Except for a couple of bouts of gastric over the years, appendix removed; tonsills removed (both as a child). The only other health issues that I've ever had have been sarc related.
Like you, I have always exercised and I have a very healthy diet. Whether or not it is because I take care of myself or my constitution is sarc related, who knows?

By BrianS
Posted October 1, 2008 at 12:56 pm

hi harmles2 & all!

Seems I was sick a normal amount of times as a child with your basic coughs, colds and fevers, and a few bouts of bronchitis. I did have the flu once - only remember it because my mom was having a fit over my temp and tossed me into the bathtub. Overall, my health was decent (outside of being overweight). As a teen the allergies kicked in, so I kept a stuffy sinus and post nasal stuff until almost out of high school. Had an allergy workup done and after 1st year of college, was feeling well enough to get off the injections. Leading up to diagnosis, seems I was sick a lot (strep that lead to tonsils being removed). After the diagnosis and current treatment (on prednisone) I've been a lot more cautious of my body and overall health. Allergies still bother me a bit at certain times of the year and I usually get one cough/cold/sinus bout whenever the seasons change from winter to spring or summer to fall. Outside of that I get my flu shot yearly and try to take care of myself.

I'd say that I was normal before sarc, and close to normal (as close as you can get w/ sarc) now. But it was definitely the sarc that made me more vigilant about my health, and made me pay attention to any small changes in my health now instead of waiting it out/toughing it out.

@Ericahope - Will add you to my prayer list, and hope that you find relief from your pains soon. Keep on fighting the good fight.

@serenityseeker - Maybe it's just weird, but I've noticed that too. The flu or a bad upper respiratory infection can run rampant through my work, or home (kids and wife catch it) and I don't get it. My sarcoid is low side of active (no flare ups), but in check. Not going to argue if it's science, or divine intervention, but I sure do appreciate not having insult added to injury! :)

@Cheesy - too funny, haha! Just don't overdo the outfit; cape, tights and a mask should suffice. :) Don't worry we won't give away your secret identity.

Just a reminder to all (especially those w/ lung part of sarc) flu season is here. Time to get the vaccine shot!

By GloriaV
Posted October 1, 2008 at 2:09 pm

Hi,
I had to write to you when I saw you were up for a lung transplant. My husband is going on the list soon...they want it done within the next three years before he is past the "age" limit. He has pulmonary fibrosis and emphysema. I have the Sarcoid. As you expressed...I too have been in the hospital several times in the last three years. Had 4 sinus surgeries from granulomas in my sinus' (which they call palups..but biopsy as granulomas) and I am being scheduled for surgery #5. My poor doctor is beside himself...he wants to "fix" me (such a sweetheart)...he has calls into some specialists in New York hoping they have some new fix. I have been very lucky that my lungs seem to be staying the same...my breathing gets wonky....and now I have swollen glands around my neck....(always something)....
Back to why I was writing...where are you getting the transplant done? Have they researched any of the new procedures for you? They are doing stents in the lungs now, filling the lungs so the "good part" carries the body....just curious. We have been researching everything for my husband...but he is not a candidate for anything other than the transplant. His will be done in Philli at Temple University.
Gloria

By GloriaV
Posted October 1, 2008 at 2:17 pm

Hi Harmles,

I was pretty healthy most of my life until the year before I was diagnosed with Sarcoid. My doctor thought I had the flu...cold....etc. I took more antibiotics than anyone should have in their lifetime! 8 months later they finally did a biopsy and found the Sarcoid! I find now that I really have to be careful being in rooms filled with coughing sneezing people. If I stay away...I stay pretty healthy....if I go to a doctors appointment (most of them are in hospitals) I usually get sick within 24 hours. Last year it went to the point of me getting Pneumonia and another hospital stay. (I do get flu and Pneumonia shots). I could be wrong...but I think it depends on your owns body's immune system...I know some people with Sarcoid that are still working....I tried...I would work for two years...get sick...work two years get sick...it was horrible! My husband has pulmonary fibrosis. He seems to avoid getting sick more than I do...except for his yearly bought with bronchitis every winter. Please...if you get enough responses to come up with a finding....let me know....
Have a great day!
Gloria

By serenityseeker
Posted October 1, 2008 at 9:25 pm

BrianS - I have also noticed that a lot of "us" have had terrible bouts with strep and have had our tonsils out later in life. My left tonsil was so big it almost touched the other one....I wonder if it had sarc? I would imagine they would biopsy it. Its funny they did not get all the tissue and part of it grew back!!

By Boxerlover
Posted October 1, 2008 at 10:02 pm

My thinking was the same, that with an over-active immune system you would not get sick. When I asked my doc, he said it was the opposite. As far as my experience goes, I was very healthy until around 12, then I started having horrible female problems and a couple years after that kidney stones. We figured that this is probably around the time I got sarc. I definately had it in 1989 when I had a biopsy for something else and the results showed the granulomas. For some unknown reason, they never told me or my family and I was not diagnosed until 2003. Between that time I only got hit with the bigger illnesses. First I had to have an emergency hysterectomy and then after that started have tons of kidney stones. Then I began to get high fevers, around 105 with horrible sore throats a few times a year that the doctors could never explain. I got cancer and the year following was spent dealing with that. From that point it was mostly kidney stones and fevers. I never got a cold or the flu, or any of the easier things. In 2000 I began to feel the full effect of my sarc with all the familiar issues we all have.

Melissa

By dada
Posted October 2, 2008 at 12:09 am

I was diagnosed with SARC some time back. It has caught me offguards- three months of vague fever, tiredness and inflammatory granules in my lung. I am really clueless. Is it a severe disease, is it a persistent one? what should I expect and how to go abt it? Help

By may_may_1968
Posted October 2, 2008 at 9:18 am

HI ALL,
NEVER GOT SICK BEFORE ALWAYS THE "TOM BOY" INTO SPORTS AND WHATEVER WAS GOING ON OUTSIDE. NOW I CAN BARELY TAKE A WALK OUTSIDE NEVER SMOKED OR WORKED IN CHEMICALS SO MY DR SAYS I'M "SPECIAL" (YEAH RIGHT) I TAKE MY MEDS AND STILL FEEL LIKE CRAP. ANYWAY WE MUST DO WHAT WE CAN WHEN WE CAN. MAY

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