View Full Version : SORRY I HAVE BEEN GONE, BUT WAS RELAPSSING BADLY
10-27-2006, 06:16 AM
I want to apologise to all of you for not being here as often as I would like to be.
AS some of you know I was dealing severe pain in my neck and back due to bone chips, then I got a pneumonia shot that was supposed to KEEP ME FROM GETTING it....well I got it and bad my left lungis more than 1/3 filled with fluid.
I am also dealing with some MEN's problems most of have to deal with once we are over 50....
I'm to have THE TEST performed next week ,but in the mean time just fighting off this relapse and the stress of what they might find has me all twisted inside.
Most of you know I do not like to whine or complain but rather have a posotive outlook but for even us OPTOMIST are sometimes overwhelmded with BAD NEWS !!!!
SUZ emailed me prior to going on VACATION and I would like to thank all who made her DAUGHTER'S BIRTHDAY no longer a BAD DAY but one that she'll NOW not only enjoy but one that she proably will now CELEBRATE LAURI's LIFE rather than mourn her loss FROM NOW ON !!!! !!!!
AS you all know SUZ is a GREAT WOMEN for all she and I do her, it is she who is the driving force behind this site along with BELOVED ADMIN !!!
(she's 1 of my best friends & a GURADIAN ANGEL TO ME SO TO SPEAK )
BUT TOGETHER SHE AND I DO OUR BEST TO GIVE YOU THE STRAIGHT ANSWERS AND IF WE DO NOT HAVE THEM WE WILL DO THE NEEDED RESEARCH TO GET YOU THE RIGHT ANSWERS.
HAVE A GREAT WEEKEND AND TRY TO GO OUT SIDE AND CHECK OUT THE BEAUTY IN THE LEAVES CHANGING...and GET THOSE FLU SHOTS IF NESSECCARRY !!!!!
She let me know that BROWNEYED GIRL and I think MARYCAIN would be looking over the site since I was in such pain I could not even sit here.
Should ANYONE need me for any reason feel free to email me at STJAMES13@GMAIL.COM and I will respond ASAP !!!
THANKS AND GOD BLESS YOU ALL I HAVE MISSED YOU ALL AND HOPE YOU ARE ALL DOING WELL
HUGS AND HOPE GOD BLESS YOU ALL
10-27-2006, 06:36 AM
I am pretty new here. I have SLE and have had it most of my life although I did not get diagnosed until I was 36 years old. I have been on medications ever since diagnosis. I am now 47 years old.
I am glad that you are feeling better. I am sorry to hear that the Pneumonia shot did this to you. I hope that the test that you are going to have done next week comes out good for you. I will keep you in my prayers. Hugs, Kathleen :D
10-27-2006, 06:54 AM
AND WELCOME TO OUR LITTLE HOME AWAY FROM HOME !!!!
I thank you for your kind words and I will be OK !!!!!
I have to have this test done as I never knew who my mother was until she died and then they found me and I got all her stuff and her medical papers only to find that she and 5 siblings all died from COLON realted cancer.
So being over the HALF CENTURY MARK my docs wants me to have this test done TOOT SWEET....he had felt things he said were out of the ordinary and I would rather deal with it now when it is early than later when it is an emergency.
Thanks about the pneumonia comments.....I had a feeling I would get it and just MONDAY they gaveme a flu shot and GUESS WHAT....that's right now not only do I have pneumonia but I had a 101.3 temp last night and have been batteling FLU sumptoms since WEDNESDAY.....
I wonder if we with these auto-immune probelms should even be getting these shots?????
I'll find out this week !!!!! AND I WILL post the results of what I am told..maybe we should NOT be getting FLU and pneumonia shots as our immune systems are shot....it may just be making US sicker.
I'll let ya'll know ASAP !!!!
THANKS AGIN FOR YOUR WELL WISHES
HAVE A BEAUTIFULL WEEKEND :wink:
GOD BLESS YOU
STJAMES 8) :wink:
10-27-2006, 08:29 AM
It seems like you have really bad luck big time with the immunization shots. With this happening, it makes me wonder if we should be getting the Flu and Pneumonia shots. It is frightening that is for sure. I have not gotten either one of them yet and don't know if I will. Hmmmm makes you think you know what I mean.
I do hope that your test comes out ok. I had to get a colonoscopy last year and thank heavens it came out ok. They thought I had something going on in my colon too. I will keep you in my prayers. Hugs, Kathleen
10-27-2006, 10:51 AM
My rheumatologist no longer recommends routine flu vaccinations for his lupus patients because of his concerns about its safety and efficiency in lupus patients. He does recommend it for some patients like heath care workers or teachers with a high risk of being exposed to flu, but even for those patients, he only gives the vaccine which does not contain preservatives (thimerosol-free vaccine). Anyone allergic to chicken or eggs shouldn't have flu shots.
People with lupus or anyone whose immune system is compromised should not have any "live virus" vaccine (includes oral polio, chickenpox, measles, mumps, rubella among other) because they can contract the disease from the live virus. They can also become infected by being around someone who has just been vaccinated with a live virus vaccine because those people can "shed" the virus - I actually represented a woman about five years ago who contracted polio after her daughter took the oral polio vaccine. This is an area where lupus patients with young children, or who teach young children, have to be especially careful.
The injectable form of the flu vaccination and the pneumovax vaccine are "killed" viruses - the nasal form of the flu vaccine FLUMIST is live virus and should be avoided by anyone who is immuno - suppressed. Theoretically at least, you cannot catch the flu from a killed virus.
What many people don't realize about the flu vaccine is that it's reformulated every year to protect against the three strains of influenza that the CDS thinks will be most prominent that year, based on the strains active in China and Australia the year before. At best it's an educated guess, and if they guess wrong, or you live in an area that has a different strain of flu from the ones in the vaccine, the flu shot offers little or no protection,
What also happens is that flu shots are often less effective in lupus patients - even in healthy people it takes about two weeks after a flu shot for protective antibodies to be formed, in lupus patients it can take 3-4 weeks, and even then, they will only have 40-50 percent as many antibodies, so they are less protected. If you are exposed to the flu at the doctor's office while getting your flu shot, you can develop flu before the shot ever takes effect. Low-grade fever, headache and body aches are also common side effects, so the shot itself can make you feel like you've got the flu.
Some rheumatologists think the flu shot itself stresses the immune system and makes patients more susceptible to influenza-like diseases, such as like rhinoviruses respiratory syncytial virus [RSV], adenoviruses, and parainfluenza viruses. There is also some emerging research that suggests yearly flu shots may increase the risk of developing Alzhiemer's disease, so this is also a concern.
Washing your hands often is the best way to avoid getting the flu - orange juice or vitamin c supplements during flu/cold season, and eating a serving of yogurt with active yogurt cultures every day also reduces your chances of catching cold and flu.
One thing to be careful about - a lot of natural remedies that claim to prevent colds or flu contain echinachea or goldenseal - people with lupus shouldn't use these because they can trigger a flare.
The last year that I got a flu shot, I got the flu twice - I haven't gotten once since and whether coincidentally or not, also haven't had the flu. So I'm sticking with the orange juice and yogurt - so far it seems to work.
10-28-2006, 10:16 AM
Thanks for the input MARY it makes sense to me and I was waery of getting it after what the pneuminia shot did to me.
I am DONE getting those shots....I'll take my chances !!!!!
10-28-2006, 11:15 AM
Holy cow. I don't understand why my Rheumatologist demands that I get the Flu shot every year. This is worrysome big time. I have not gotten one yet this year and hope that the doctor forgets to mention it to me. I sure won't volunteer it, you can bet on that.
I know that we can not get the live vacines as they are dangerous due to our immune system problems.
Years ago my son got the MMR booster to enter Kindergarten and he actually caught the Mumps from it. He was out of school for over a week.
Mary I think that I saw on the internet where they caution against people who have Eczema getting the Small pox vaccine or even being around anyone that has recently gotten one. I know my son got the smallpox vaccine before he went to Iraq in the Army. I know they don't even offer the Smallpox vaccine anymore to anyone. Did I read this information right. The internet said that this vaccine could kill a person with Eczema.
I am just wondering if I read that right.
10-28-2006, 12:22 PM
Measles, mumps and rubella are all "live" vaccines so a child with a primary immune deficiency does have a risk of actually contracting the disease, although usually a mild case because the virus in the vaccines are much weaker than the "wild" virus.
People with atopic dermatitis (the kind of exzema that usually develops in infancy) are at high risk of developiing a condition called "eczema vaccinatum", a serious and sometimes fatal complication of the smallpox vaccination. People with other forms of eczema or any other skin condition also have a risk of this, although not as high. The smallpox vaccination doesn't actually contain smallpox virus, so you cannot contract smallpox from being vaccinated - however, people who are immune-suppressed or have other immune deficiencies can contract "vaccina" - which is the virus the vaccine is made from.
People who live in the same household with a high risk person should also not be vaccinated, because of the risk of exposure. Any vaccinated person needs to keep the injection site tightly bandaged to avoid exposing anyone.
The U.S. stopped routine smallpox vaccinations in 1972 because the disease has been eradicated in most countries. After the 9/11 attacks President Bush started a voluntary program to immunize health care workers and other first responders because of the threat of a bioterrorism attack - military personnel deploying to high-risk areas such as Iraq have to be vaccinated unless they have a medical exemption. Military personnel who refuse face court-martial and dishonorable discharge.
Chances are, other than military personnel, you will never be around anyone who's been vaccinated recently, so this shouldn't be an issue.
10-29-2006, 06:12 AM
A small percentage of people are allergic to the preservative in vaccines called Thimerisol. It is the same additive in contact lens solution. I am very allergic and I have very bad systemic side effects for several days including injection site pain and reddness, fever, chills, muscle aches and pains, nausea, vomitting. Now I get the preservative free vaccines and feel much better afterwards. Its possible with our messed up immune systems that this could be whats going on
10-30-2006, 07:01 AM
THAT ALONE is one of the BIGGEST problems with LUPUS....EVERYTHING IS A GUESS....MAYBE A CALCULATED ONE BUT A GUESS NONE THE LESS.
Some of us have other IMMUNE problems that the DOCS seem to forget.
THIS IS WHY MUST BE VIGILANT and remind our DOCS what we are taking and what makes us sick or sicker.
DO your own research and bring it to the DOCS with you and let him explain why or why you should or shoud not get the immunizations.
HAVINGBEEN IN VIET NAMN I was forced to a ton of IMMUNIZATIONS prior to going overseas...who knows out of that what made me sicker or made my LUPUS come to life??????
I don't know and really do no THINK MOST DOCTORS KNOW EITHER.
When someone who is sick stands up and say something there is always some JERK who tries to make them look foolish.
A PERFECT example is the latest interview with MICHEAL J FOXX.....some MORON actually is claiming that he stopped taking his meds so he would shake more and look worse than he really was !!!!
CMON how low can these DOC and POLITICIANS GO?????
Yeah like the guy is gonna make himself sicker and risk DIEING just to get his point acrosss to some know it all politician who actually KNOWS NOTHING !!!
MAYBE we should have some of them who are against stem cell research n stuff and inject them with PARKINSON'S and LUPUS and then they can tell us FIRST HAND how badly they need to put some money into these terrible diseases and do something.
Wonder how they would re-act to THAT IDEA??????
Since thay obviously think it is no big deal !!!!
ST JAMES 8)
10-30-2006, 07:18 AM
You know that would be a good idea. It makes me sick the way that some doctors and politicians act towards people. I know first hand what it is like to have a doctor treat you badly. It took years for me to get diagnosed. I am very serious big time. I started having lupus symptoms when I was a very young child. I had no idea what the problem was at the time and my mother would tell me that I was just having growing pains. Shoot there is no such thing. The sun sensitivity came about when I was about 10 years old. I started getting deathly sick if I was out in the sun. In school the lights would give me horrible headaches. It was unreal. I started getting the Dishydrotic Eczema on my hands when I was about 14 years old. The joint pains started when I was in my early 20's. I started going to the doctors in my twenties and shoot they would see the Eczema and get side tracked and decide that that was the culprit and would not even test me for anything else. They would tell me that I was worrying needlessly. I found out my younger sister was diagnosed with Lupus and I went to the doctors several times trying to get them to test me for Lupus to no avail. I did not even get tested for it until I was 36 and very very sick. I made an appointment with a GP that was just out of Med School and in his new office. I told this man that if he was going to see me that he had to listen to me and run the tests for Lupus or I would get right up and leave and he would not get paid. I was at my wits end. I had almost all of the symptoms listed in the Criteria for a Lupus dx. I even had the Malar rash. The worst of all the symptoms was the Myocarditis and that I was to find out later could have killed me outright. I could have died instantly at any time. My heart was not beating right and I was terribly short of breath with severe chest pains. I had pain clear up into my neck and into my jaw on the left side. My fingers were very badly swollen and hurt terribly. All of my joints were causing me severe pains. I had night sweats big time to where I would wake up drenching wet. I mean to tell you I was deathly sick. This doctor told me that I did not have to ask him to order the tests for Lupus, because he believed that I indeed did have it big time. He ran all of the tests and 3 days after the results were in I was sitting in the Rheumatologists office. The Rheumatologist told me right out that I had the most clear cut case of SLE Lupus that he had seen in all the years of his practice. He also dx Sjogrens as a overlap. He put me on a lot of medications and got me under control quickly. I have been seeing this man for 12 years. I still have problems, but not as severe as then. He told me that I will be on medication for the rest of my life.
I guess what I have to say is that doctors need to listen to patients more closely and not just dismiss them. I don't know what else to say. I guess the Lupus needs a lot more publicity to help others that are being misdiagnosed.
10-30-2006, 07:33 AM
The jerk was Rush Limbaugh - who obviously knows nothing about parkinsons or he would know the jerks and shakes are a side-effect of actually taking the parkinson's meds! Not the opposite. Parkinson's causes people to be stiff, rigid, unable to move - the meds let them move but causes tardive dyskinesia, uncontrollable movements. I find it unforgiveable that Rush Limbaugh would choose to mock and imitate Michael J. Fox when the very thing he's mocking proves that Fox was taking his meds. But anyone who refers to women as "feminazis" clearly has a few screws loose anyway, so I really blame his listeners more than him. If people didn't listen to his ranting, he'd be off the air!
10-30-2006, 08:27 AM
Rush Limbaugh, if I am not correct was charged with illegal possession of perscription drugs. He aught to be more concerned about his own mental disorders then to cut others down that are genuinely sick. I wonder if he has a site on the net. Hmmmmm should all pay it a visit and blast him. Just a thought.