PDA

View Full Version : Low Immunity Vs Autoimmunity with infections



merryalliss30
05-30-2011, 06:44 AM
I'm curious to the differerence between autoimmunity & low immunity in the case of getting sick.

Peridot20_Gem
05-30-2011, 07:38 AM
LOW IMMUNE SYSTEM

A powerful immune system does wonders for your well-being and is the gateway to a healthy life. A low white blood cell count, hence a weak immune system, leaves the body defenseless and open to attack. Many people wonder why they are so susceptible to colds and other viral infections, oblivious that their own immune system may be the culprit.

The Structure of Your Immune System
The lymphoid organs are located in the entire body. They host the small white blood cells (lymphocytes) that help to guard the body against disease. These lymphocytes plus phagocytes (the blood cells that protect the body against foreign particles and bacteria) comprise the immune system. All immune system cells must work together to operate effectively. When this fails to occur, a weak immune system develops.
Excess Sugar May Hurt Your Immune System
By consuming too much sugar, your immune system loses its ability to destroy germs by 40 percent. Sugar suppresses the immune system and begins affecting the body within minutes after consumption, and can last for up to 5 hours. To combat virus and bacteria, the white blood cells need a high supply of Vitamin C. When excess sugar is inside the body it erodes the Vitamin C present and breaks down the immune system cell structure.
Diseases Weaken Your Immune System
When part of the immune system malfunctions or is absent, an immune deficiency disease can develop. Immune deficiency diseases are bred either from an inborn immune system cell defect (primary immune deficiency disease) or from an extrinsic environmental agent (secondary immune deficiency disease). Example: AIDS is caused by an extrinsic force (HIV) and is therefore a secondary immune deficiency disease. Autoimmune diseases such as multiple sclerosis and lupus affect the tissue that connects the body tissue and organs, triggering a breakdown in the immune system.
Alcohol Can Hurt Your Immune System
Excessive alcohol intake deprives the body of valuable nutrients and causes nutritional deficiency. It stops the white blood cells from multiplying and disables the macrophages (the cells that ingest foreign particles) from generating tumor necrosis factors (proteins). This shortage of immune system cells results in a weakened immune system. The amount of damage caused by alcohol to the immune system depends on how much the user ingests.
Allergens Affect the Immune System
When the immune system views otherwise harmless materials such as pollen and dust or a certain food type as a threat, it goes into attack mode, hence an allergic reaction. The body's intestinal lining is generally an impenetrable wall built to block foreign invaders. When an allergy occurs, the wall is destroyed leaving the immune system open to invaders and other toxins.
Treatment for a Weak Immune System
For patients with a low immune system, physicians will sometimes prescribe immune-boosting medicines such as interferon, which includes protein for combating viral infections. Maintaining a balanced diet and increasing vitamin intake are also highly recommended.

Peridot20_Gem
05-30-2011, 07:45 AM
IINFECTIONS AND AUTOIMMUNE DISORDERS

Autoimmune disorders occur when the body's immune system, which normally helps protect you against infections, instead turns against your organs and tissues. It’s not yet clear exactly what causes autoimmune disorders, but a number of factors appear to play a role.

Some researchers believe that people who have had certain infections may be at higher risk of developing several types of autoimmune disorders. In fact, scientific evidence has linked autoimmune disorders with infection for well over a century.

Infection and Autoimmune Disorders: What's the Connection?

If you have an autoimmune disorder, your immune system has essentially malfunctioned. And because it will no longer recognize your body's own tissues as healthy "self" tissues, it will begin to produce an immune response against them. This immune response involves the production of a type of antibody known as an auto-antibody, which causes the body to attack its own organs and tissues.

Since bacteria and viruses trigger a similar immune response, some researchers have suggested that antibodies produced in response to certain infections may also attack some of normal cells because they somehow resemble the bacteria or virus that caused the infection. Others say that infections may actually damage your immune system, leading to the development of autoimmune disorders.

No single infection has been found to be responsible for the development of autoimmune disorders. In fact, researchers have found that many different infections may be linked to a single autoimmune disorder. Some of the infections and their potential related autoimmune disorders include:

Multiple sclerosis: Epstein-Barr virus (EBV) and measles virusType 1 diabetes: coxsackievirus B4, cytomegalovirus (CMV), mumps virus, and rubella virusRheumatoid arthritis: EBV, hepatitis C virus, Escherichia coli bacteria, mycobacteriaLupus: EBVMyocarditis: CB3, CMV, ChlamydiaMyasthenia gravis: hepatitis C virus, herpes simplex virusGuillain-Barré syndrome: EBV, CMV, Campylobacter bacteria. Of course, not everyone who gets these infections will develop an autoimmune disorder, since it seems that in addition to the infection, some sort of genetic predisposition is involved in the development of such conditions.

Many other infections may also be related to the development of autoimmune disorders. Because these infections usually occur well before any autoimmune disorder-associated symptoms develop, it can be difficult to determine a definitive link between one infection and a specific autoimmune disorder.

It is important to note that while the evidence is certainly mounting, researchers don't yet know for certain that previous infections increase the risk of developing autoimmune. But current studies are looking at exactly how infections may lead to the development of autoimmune disorders, and which specific infections may be responsible. The hope is that this research will one day lead to new strategies for preventing and treating autoimmune disorders.

Gizmo
05-30-2011, 09:53 AM
This is off the Lupus Foundation website:

Why Do People With Lupus Get Infections So Easily?

An individual with lupus is more susceptible to infection than most people for two reasons:
Lupus directly affects a person's immune system and reduces his or her ability to prevent and fight infection.
Many of the drugs used to treat lupus suppress the function of the immune system and leave the body more prone to infection.
Effects Of Medications Used In The Treatment Of Lupus
Cortisone-like drugs (prednisone) and cytotoxic drugs such as azathioprine (Imuran) and cyclophosphamide (Cytoxan) increase a person's susceptibility to infections because they suppress both normal and abnormal immune system function. However, controlling lupus is usually more important than the danger posed by a possible infection due to the use of immunosuppressive medications.

The risk of infection parallels the dose and the duration of treatment with steroids: a daily dose of 20 mg. of prednisone is enough to impose a significant risk of infection taking steroids every other day ("alternate day" treatment) decreases the risk and incidence of infections

Direct Effects of Lupus On The Immune System
People with lupus have abnormalities in their immune systems, so they are more likely to develop infections. They are more susceptible to infection even if they do not take corticosteroids. Lupus experts such as Dr. Marian Ropes sparingly used steroids in treating her patients in the 1940s and 1950s. Yet, the data she published showed that the majority of her patients developed serious infections, even on low-dose steroids.

This is from the Johns Hopkins website:

When you develop lupus, you make antibodies against self. Your immune system goes doubly wrong when you have lupus because not only are you making antibodies against yourself, but your immune system doesn't work as well against infection. It's very unfair! But that's what lupus is all about antibodies against self.

Gizmo
05-30-2011, 09:59 AM
MaryAlice - good question, I have wondered this myself! It doesn't make much sense if you try to analyze it in detail, but if you just say that your immune system doesn't know what the heck it's doing, then it's easier to understand. LOL

My immune system is actually very strong - my white blood count is always HIGH and I never get infections, not even colds. I figured it was because my immune system was so ramped up that it was fighting everything, foreign and domestic.

Peridot20_Gem
05-30-2011, 10:13 AM
Hi Gizmo,

What you wrote does make sense and i added those posts as it gives full details on both.

If your healthy then you carry a good immune system but if infections start or if anything connected to Lupus comes down to heavily on our system, then our immune system breaks down and like you said involves white cells sometimes, then it's not got the strength to fight back and that's where alot of meds are called in to help the system because our immune system fights our own bodies and we've got not protection, it's all down to what can help the system regarding meds like i mentioned.

Plus if your autoimmune system goes really low e.g like mine you keep getting more affects of whatever illness or infections your carrying.

merryalliss30
05-30-2011, 11:39 AM
I don't know why I can't just think my immune system is flawed, it's going to act up, instead of trying to dig deeper into the situation and figure it all out. I'm interested in things when it comes to medicine and I like to learn all I can, and when something arises that I can't figure it out, it really gets my mind going.

Last year I wasn't on any steriod/immunosuppressant when these infections kept recurring, and hadn't been on treatment for AI disease for 10 yrs, and it took antimalarials to stop it from occuring repeadedly.

I enjoyed reading all this. While I was looking online today, they stated that it is thought chronic infections can lead to AI diseases. Interesting EBV is included in that theory. What my very first diagnosis was based on, EBV/CFS/and my immune system attacking itself. I have never known that I had an EBV infection but my test results showed I did. I can sure tell without question when I get sick anymore.

Peridot20_Gem
05-30-2011, 11:56 AM
Mary,

Your wondering about this and you've just answered your own question, the antimalerials helped stop it because they do surpress the system and are good in the use of Lupus symptoms.

I enjoy looking up stuff when my brains not in a terrible slow mood and the last 2 days have'nt been to bad for me.

merryalliss30
05-30-2011, 01:06 PM
Though antimalarial's do not treat HSV, they have stopped it from constantly recurring regardless, if that is infact what I have, and I'd say it's the likely chance. It would of had to of done that by reducing the trigger, my fatigue, or calming my immune system down to where it worked better. Why is it doctors don't see it that way? The one I saw said frequent HSV infections are due to a weekened immune system. Sometimes I think they don't even have a clue what's what.

Peridot20_Gem
05-30-2011, 01:47 PM
The HSV which you have could have possibly lowered your immune system plus there is no proper cure for it either, so doctor's do have to think the best way of helping the immune system (Doctor's are only playing god with us all) and by using different meds it shows them what's the best to help.

Mary i'm going to add some info below on HSV and it tells you the lot about the condition and i'm also adding a pic, which is identical to what your suffering on your lips, i thought you may like to read it.

Peridot20_Gem
05-30-2011, 01:56 PM
HSV - (Herpes) & Picture

http://i56.tinypic.com/11ltxmw.jpg

Herpes simplex (Ancient Greek: ἕρπης - herpes, lit. "creeping") is a viral disease caused by both herpes simplex virus type 1 (HSV-1) and type 2 (HSV-2). Infection with the herpes virus is categorized into one of several distinct disorders based on the site of infection. Oral herpes, the visible symptoms of which are colloquially called cold sores or fever blisters, infects the face and mouth. Oral herpes is the most common form of infection. Genital herpes, known simply as herpes, is the second most common form of herpes. Other disorders such as herpetic whitlow, herpes gladiatorum, ocular herpes (keratitis), cerebral herpes infection encephalitis, Mollaret's meningitis, neonatal herpes, and possibly Bell's palsy are all caused by herpes simplex viruses.

Herpes viruses cycle between periods of active disease—presenting as blisters containing infectious virus particles—that last 2–21 days, followed by a remission period. Genital herpes, however, is often asymptomatic, though viral shedding may still occur. After initial infection, the viruses are transported along sensory nerves to the sensory nerve cell bodies, where they become latent and reside life-long. Causes of recurrence are uncertain, though some potential triggers have been identified, including immunosuppressant drugs (see below). The previously latent virus then multiplies new virus particles in the nerve cell and these are transported along the axon of each neuron to the nerve terminals in the skin, where they are released. Over time, episodes of active disease reduce in frequency and severity.

Herpes simplex is most easily transmitted by direct contact with a lesion or the body fluid of an infected individual. Transmission may also occur through skin-to-skin contact during periods of asymptomatic shedding. Barrier protection methods are the most reliable method of preventing transmission of herpes, but they merely reduce rather than eliminate risk. Oral herpes is easily diagnosed if the patient presents with visible sores or ulcers. Early stages of orofacial herpes and genital herpes are harder to diagnose; laboratory testing is usually required.

A cure for herpes has not yet been developed. Once infected, the virus remains in the body for life. However, after several years, some people will become perpetually asymptomatic and will no longer experience outbreaks, though they may still be contagious to others. Treatments with antivirals can reduce viral shedding and alleviate the severity of symptomatic episodes. Vaccines are in clinical trials but have not demonstrated effectiveness. It should not be confused with conditions caused by other viruses in the herpesviridae family such as herpes zoster, which is caused by varicella zoster virus. The differential diagnosis includes hand, foot and mouth disease due to similar lesions on the skin.

merryalliss30
05-30-2011, 03:22 PM
There's no way it lowered my immunity, for taking medications to suppress it, would not have been helpful. My doctor said taking medications to suppress it could cause recurrences of infections, but I have not been on Imuran very long, and I doubt him or any other doctor around here would acknowledge that autoimmunity can cause recurring infections also.

giggle
05-31-2011, 01:16 AM
A simple way to put it.

Immune system. Protects your body by attacking infections.

Lowered immunity. When your immune system does not fight off infections efficiently.

Autoimmunity. Your immune system for some reason has started to see parts of your own body as infections to fight off.

Frequent infection can be experienced with either lowered immunity or autoimmunity. Autoimmunity does not mean your immune system is stronger than others and it does not exclude you from having a lowered immunity.

I hope this makes sense :)

Peridot20_Gem
05-31-2011, 03:00 AM
Giggle,

That's what i been expressing unless my expression of how the immune system works is jumbled up.lol

merryalliss30
05-31-2011, 04:43 AM
I do understand it better now, thanks to all these reply's. I wonder if a doctor would understand that overactivity could be bringing on frequent infections? I am seriously doubting since the last doctor I saw said it would be due to lowered immunity.

I've been talking to this guy about the HSV and he thinks I'm crazy. He doesn't believe your immune system can trigger these infections or understand the least bit how antimalarials stopped this, since that is not treatment for the infections. I probably had about 8 outbreaks last year starting at the first of the year, and I've only had one this year since treatment with antimalarials.

I guess they all can think I'm crazy if they want.. But I know I've been feeling better on treatment and that these infections aren't recurring every month now. So whatever I guess.

Peridot20_Gem
05-31-2011, 10:03 AM
Your immune system can't trigger the symptoms but the symptoms can affect your immune system and lower it's defence mechanissum.

Anti-malerials can help surpress the symptoms but if the symptoms or disease is to strong it's still active to a certain degree, so that's when alot of people have to either take extra drugs to help it or are moved onto something stronger.

giggle
05-31-2011, 03:05 PM
The problem is its a guessing game as much for doctors as it is for us. And years of study and the ability to retain information for exams does not make doctors smarter than us. :)

There are doctors out there that really arent very bright. It makes perfect logical sense that if your autoimmune conditions were under control with plaquenil, that your health in general would be better and perhaps better at fighting off infection. Things like HSV and EBV reoccur due to stress, colds, flu... and the healthier in general you are the less often they occur. It only seems logical that a reduction in autoimmune activity would also mean a decrease in HSV. Similarly, an increase in autoimmune activity would be likely to cause a weakened immune system and a greater chance of viruses rearing their heads. I rarely get colds and flus but when I do I am out for the count.

Its really hard finding decently intelligent doctors. Normally its either their ego blinding them or their brains are too overburdened by information there is no room for thinking lol

Sorry terry I didnt mean to repeat what you said, i was skimming the forum while at work : )

Peridot20_Gem
05-31-2011, 03:23 PM
Hi Giggle,

It is a guessing game like you said but we know what we're on about, it's that some people explain in different ways.

Don't apologise mate, as no offence as been taken with me what so ever and GET SOME WORK DONE.lol

bunny28
05-31-2011, 05:23 PM
This is off the Lupus Foundation website:

Why Do People With Lupus Get Infections So Easily?

An individual with lupus is more susceptible to infection than most people for two reasons:
Lupus directly affects a person's immune system and reduces his or her ability to prevent and fight infection.
Many of the drugs used to treat lupus suppress the function of the immune system and leave the body more prone to infection.
Effects Of Medications Used In The Treatment Of Lupus
Cortisone-like drugs (prednisone) and cytotoxic drugs such as azathioprine (Imuran) and cyclophosphamide (Cytoxan) increase a person's susceptibility to infections because they suppress both normal and abnormal immune system function. However, controlling lupus is usually more important than the danger posed by a possible infection due to the use of immunosuppressive medications.

The risk of infection parallels the dose and the duration of treatment with steroids: a daily dose of 20 mg. of prednisone is enough to impose a significant risk of infection taking steroids every other day ("alternate day" treatment) decreases the risk and incidence of infections

Direct Effects of Lupus On The Immune System
People with lupus have abnormalities in their immune systems, so they are more likely to develop infections. They are more susceptible to infection even if they do not take corticosteroids. Lupus experts such as Dr. Marian Ropes sparingly used steroids in treating her patients in the 1940s and 1950s. Yet, the data she published showed that the majority of her patients developed serious infections, even on low-dose steroids.

This is from the Johns Hopkins website:

When you develop lupus, you make antibodies against self. Your immune system goes doubly wrong when you have lupus because not only are you making antibodies against yourself, but your immune system doesn't work as well against infection. It's very unfair! But that's what lupus is all about antibodies against self.

Thank you this is a question for which I have been searching the answer. Very helpful!

merryalliss30
06-01-2011, 04:31 AM
I can come up with another good question, which I am going to try to find the answer to today. Why is it that autoimmunity causes fatigue??

merryalliss30
06-01-2011, 05:33 AM
This is harder than I thought. Some reasons behind it may be:

Depression, pain, quality of sleep, quantity of sleep, exercise, severity of illness, flares, medications, stress, poor diet, anemia.

For me, none of these were the case when this happened, so I'm not grasping that as a cause for autoimmune fatigue.

It's also told the cause of the fatigue is still unknown. Even with proper treatment, normal antibodies, and remission, fatigue can still persist. How sweet is that?

Also read that a study showed that inflammation can get into the brain and cause the fatigue with people who have autoimmune disorders.

So I guess there is really no clear cut answer to this one.

merryalliss30
06-01-2011, 06:00 AM
I also read constant stimulation of your immune system through fighting inflammation, will make you tired, and cause chronic inflammation.

I found this interesting:

There are a number of factors that contribute to the unrelenting signaling of alarm in the body ultimately leading to the development of continuous inflammation. These are all environmental and can be controlled! These are summarized in the below table:

constant high stress
poor diet
lack of physical activity
poor digestion
toxic exposures
emotional hurts
nutritional deficiencies
chronic infections
hormonal balance

I have poor digestion, nutritional deficiencies, chronic infections, emotional issues at times, high stress at times, and rarely exercise. Maybe if we tried to put certain issues under control, it could help our immune system function better?

SandyR
06-01-2011, 06:42 AM
I can come up with another good question, which I am going to try to find the answer to today. Why is it that autoimmunity causes fatigue??

I think it's just exhausted from fighting with itself. Look at how exhausting it is fighting with others (like when you are in an arguement with the insurance company to dispute coverages or medications, for example) and that's just a short time thing and not an everyday all day long thing.

Linda From Australia
06-01-2011, 07:31 AM
I only wish that my fatigue was because of environmental reasons. My fatigue is as a result of Lupus, and that alone. I have totally changed my life since being diagnosed with Lupus 10 months ago. I have made huge changes in my life to combat this disease, giving myself every opportunity to get well, making sure there is nothing that can make me sicker.

Therefore I do not have:
constant high stress
poor diet
lack of physical activity
poor digestion
toxic exposures
emotional hurts
nutritional deficiencies
chronic infections
hormonal balance

I have gone to extreme measures to make sure that these issues are under control, and my fatigue still haunts me, it is very unpredictable, and knocks me down in literally seconds. I can be fine, then within a few minutes, I am totally exhausted, just like a massive wet blanket being thrown on top of me with lead weights sewn around the hems. Nothing I do will lift that weight, I just have to wait until it lifts on its own, which can be days, weeks or months.

You are right, there are certain things that we can do to make sure that we are healthier, and help with the fight against Lupus. But Lupus hits you, no matter how much you look after yourself. Sometimes I just think that I should just give up my super healthy lifestyle, and super positive attitude, because at times I think it doesn't make any difference. I LOVE my life, but Lupus is ruining my life, in reality ... (sorry folks) my life really SUCKS, - I HATE my life!!!!! And trying to be healthy is killing my happiness and freedom!!!

I just wish I could do just one thing (or a lot of things) just to make one day less painful and difficult. I try so hard to do everything right, just like so many other people with Lupus, but sometimes, it really doesn't make any difference

steve.b
06-01-2011, 07:40 AM
it does make a difference, you would be worse if you did not do what you are doing.

Peridot20_Gem
06-01-2011, 07:58 AM
Fatigue is a bad issue and it's been known that people can live healthy lives but it's only took one think to bring them down.

It's a never ending story where that's concerned.

merryalliss30
06-01-2011, 12:21 PM
I know I didn't have these problems when I came down sick with the fatigue, only thing I had was a previous case of the flu. I did get infections when I was younger, that would have been it. Wasn't depressed or stressed, my activity level was fine, wasn't on medications, my vitamin levels were fine, had no stomach problems, no muscle or joint pains, no nerve problems. I would just like to pinpoint the exact reason chronic fatigue occurs cause I am so sick of it. Sleep does nothing to help yet lack of sleep can make me feel alot worse. Exercise, I believe, would give me a little energy back, I had had some luck with that in the past. I also had some response to digestive enzymes, and it beats me as to why. I think it matters how you take care of yourself as to how bad you may feel. One other thing I found that really makes it worse with me is the pain. Sometimes when that pain is put under control, I am not as tired. I think that really makes a difference in how you function. Light exercising would probably lessen that for me if I could just get motivated enough to do it.

SandyR
06-01-2011, 01:53 PM
I would just like to pinpoint the exact reason chronic fatigue occurs cause I am so sick of it.

If you can find that one reason and it is a blanket reason for all of us, you could become a very wealthy and well-sought woman with the key to a cure. If that does happen, I will definitely be in line looking for the answer from you. :D

tgal
06-01-2011, 02:25 PM
If you can find that one reason and it is a blanket reason for all of us, you could become a very wealthy and well-sought woman with the key to a cure. If that does happen, I will definitely be in line looking for the answer from you. :D

LOL That was funny!

Mary Alice,

I think we all go through that at first. I wanted a REASON why this happened. Was it the chemicals that I was exposed to at my job? Is because of the problems with the water in my city? Heck, I even sent the water off to be tested. I think this line of thinking goes back to the "stages of grief" discussed in another post. There HAS to be an answer because we NEED one. It is really hard to get your head around there not being one. Maybe it is one of those things for me or maybe it is something different. I will most likely never know. I am not sure it matters as much for me now. Now I only want to know what I need to do to feel better. For me that is enough at this moment. I know there was a time that it wasn't the case.

I hope you get the answers you are looking for. As Sandy said.. you will be a VERY wealthy woman!

merryalliss30
06-01-2011, 03:10 PM
Well it's hard to accept that something is just the way it is, when you have pain and fatigue that take over your life.

So doctors don't have a clue behind why autoimmunity causes fatigue. Do they know why thyroid disease causes fatigue? Or low iron. Or any other disorders? So why not this one?

merryalliss30
06-01-2011, 03:12 PM
I only wish that my fatigue was because of environmental reasons. My fatigue is as a result of Lupus, and that alone. I have totally changed my life since being diagnosed with Lupus 10 months ago. I have made huge changes in my life to combat this disease, giving myself every opportunity to get well, making sure there is nothing that can make me sicker.

Therefore I do not have:
constant high stress
poor diet
lack of physical activity
poor digestion
toxic exposures
emotional hurts
nutritional deficiencies
chronic infections
hormonal balance

I have gone to extreme measures to make sure that these issues are under control, and my fatigue still haunts me, it is very unpredictable, and knocks me down in literally seconds. I can be fine, then within a few minutes, I am totally exhausted, just like a massive wet blanket being thrown on top of me with lead weights sewn around the hems. Nothing I do will lift that weight, I just have to wait until it lifts on its own, which can be days, weeks or months.

You are right, there are certain things that we can do to make sure that we are healthier, and help with the fight against Lupus. But Lupus hits you, no matter how much you look after yourself. Sometimes I just think that I should just give up my super healthy lifestyle, and super positive attitude, because at times I think it doesn't make any difference. I LOVE my life, but Lupus is ruining my life, in reality ... (sorry folks) my life really SUCKS, - I HATE my life!!!!! And trying to be healthy is killing my happiness and freedom!!!

I just wish I could do just one thing (or a lot of things) just to make one day less painful and difficult. I try so hard to do everything right, just like so many other people with Lupus, but sometimes, it really doesn't make any difference

I'm sorry it's like that for you.

tgal
06-01-2011, 03:22 PM
I only wish that my fatigue was because of environmental reasons. My fatigue is as a result of Lupus, and that alone. I have totally changed my life since being diagnosed with Lupus 10 months ago. I have made huge changes in my life to combat this disease, giving myself every opportunity to get well, making sure there is nothing that can make me sicker.

Therefore I do not have:
constant high stress
poor diet
lack of physical activity
poor digestion
toxic exposures
emotional hurts
nutritional deficiencies
chronic infections
hormonal balance

I have gone to extreme measures to make sure that these issues are under control, and my fatigue still haunts me, it is very unpredictable, and knocks me down in literally seconds. I can be fine, then within a few minutes, I am totally exhausted, just like a massive wet blanket being thrown on top of me with lead weights sewn around the hems. Nothing I do will lift that weight, I just have to wait until it lifts on its own, which can be days, weeks or months.

You are right, there are certain things that we can do to make sure that we are healthier, and help with the fight against Lupus. But Lupus hits you, no matter how much you look after yourself. Sometimes I just think that I should just give up my super healthy lifestyle, and super positive attitude, because at times I think it doesn't make any difference. I LOVE my life, but Lupus is ruining my life, in reality ... (sorry folks) my life really SUCKS, - I HATE my life!!!!! And trying to be healthy is killing my happiness and freedom!!!

I just wish I could do just one thing (or a lot of things) just to make one day less painful and difficult. I try so hard to do everything right, just like so many other people with Lupus, but sometimes, it really doesn't make any difference

No Need for sorry my friend. Your positive attitude is one of the things I adore most about you but sometimes the truth is the truth. We have to be "ok" out in the world but we don't have to do it here. I wish I could hug you right now. You have gone through so much

merryalliss30
06-01-2011, 04:25 PM
Life doesn't suck, it can be a wonderful thing. It's the stinking disease that sucks. Sometimes no matter what you do, you can't get any better. Starting to feel a bit that way myself today. I try not to put thought into my future because when I do, it leads to disasterous thoughts. So much of me is trying to find a stupid answer as to why because I don't want to see that day come. I have to reach a point I get some relief with this, and having one stupid infection just to take it all away again, just wow. It never ends. And there is no need to be sorry for we understand it all too well.

tgal
06-01-2011, 04:49 PM
Life doesn't suck, it can be a wonderful thing. It's the stinking disease that sucks. Sometimes no matter what you do, you can't get any better. Starting to feel a bit that way myself today. I try not to put thought into my future because when I do, it leads to disasterous thoughts. So much of me is trying to find a stupid answer as to why because I don't want to see that day come. I have to reach a point I get some relief with this, and having one stupid infection just to take it all away again, just wow. It never ends. And there is no need to be sorry for we understand it all too well.


There it is. There is the place that is so hard to be in. I have good news and bad news for you. The bad news is what you already know... this doesn't go away. The good news is that when you finally find a doctor that understands what needs to be done you will get in a group of meds that will give you a life back. It isn't going to be the same on but it can be wonderful still.

I was there all of last year and through the first part of this year. The fear, the confusion, the pain, the fatigue and no one, literally NO ONE seemed to care. When I found this board there was a sigh of relief because someone now "Gets it". It helped a lot but it didn't fix my physical, emotional or financial problems. It did, however, give me a place to talk, listen, cry, vent and speak my fears out loud. I can't begin to tell you how much that helped me. Of course I can't do that at home because I don't want to worry my daughter and I had gone to doctor after doctor and they all said something was wrong but we don't know what. Or they said "we believe you have lupus but tests don't really back it up so we can't give you a written diagnosis. I then lost my job and insurance because after a seizure in my office the doctors would not relieve me to go back to work. Fear, yes I do understand it. So does almost everyone on this board.

Thank you for sharing your thoughts with us and allowing us to get to know you. You are a part of our WHL family and we are always here for you. You don't have to fight this battle alone. We can't diagnose your problems but we can support you as you make your way down this difficult path

merryalliss30
06-01-2011, 05:24 PM
Meaning what? I have to find a rheumatologist who I have to try to convince I am sick? I don't think I can go through that again.

tgal
06-01-2011, 05:52 PM
Meaning what? I have to find a rheumatologist who I have to try to convince I am sick? I don't think I can go through that again.

It sucks. It sucks badly! I am not going to lie to you and try to make it sound easy because it isn't for many of us. I can honestly tell you that trying to get a diagnoses was the worst time of my life (and I had some bad ones as a child). So many days I just wanted to give up. I was put on plaquenil and 5 mg steroids because they did say I had Discoid Lupus and SCLE Lupus which basically means I have the type of Lupus that only affects skin and joints. I knew better. I all of a sudden started having seizures. How could they tell me the two were not related? The problem that I found was that each specialist didn't really get into anything but what their specialty was. Rhuemy sent me to Neuro about seizures. Neuro didn't care about what Rhuemy was doing. I felt like I was on the roller coaster from hell and I couldn't get off. Each time there was a new doctor I would get my hopes up and then I would crash again.

I found this sight and Susie made a comment that I will never forget in a post. She said "They are your doctors. You hired them and you can fire them if you wish". Wow. I never thought of it that way. I always went in with my tail between my legs and allowed them to make me feel crazy. I didn't want to go to another Rhuemy, GP, Nuero, Cardi, because I didn't want to be accused of "Dr Shopping:. Susies comment changed that for me. I kept going. I found another doctor and if they wouldn't listen to me I fired them too. I can't lie and say that made it easier. There were times I came in here crushed and ready to give up. I even got so bad that I decided to stop taking the Plaquenil because if they want to see me when I was sick I was gonna show it to them. Sighs... really bad idea. Within two weeks I was in really bad shape and caused myself as much harm as they had done by not helping me get better.

So the answer is yes, you have to be your own advocate. You have to force yourself to keep going until someone will listen. You have to do whatever it takes to make someone care enough to want to help you as a person not just a patient. Sadly this is common amount people with AI diseases. Since often there is no real "test" for them we get pushed around until we start stomping our foot and saying "enough is enough". I didn't do it soon enough and I damaged things that shouldn't have been damaged. Looking back I would have done it sooner but before Susies comment I though the doctors were in charge instead of understanding that I am.

I know it hard. There will be anger, tears, frustration etc but you must fight for yourself. You have to find someone that sees you as a person and listens. If you have a good GP try them. If not find one. Often times they are willing to look at the whole picture and actually help you get on your way to a diagnosis. It isn't fair. If someone went to the doctor with a growth on their arm and it turned out to be cancer no one would make them feel like they are crazy but we have to fight and claw our way to a place where someone believes what we are saying.

You can do it. It will take effort and it will make you tired but hopefully you will get an answer and someone will be able to tell you what is wrong with you. It will be wonderful tear filled day when that happens but it hurts until then.

(sorry for the novel!)

merryalliss30
06-02-2011, 04:21 AM
No I can't do it. You look at me and you can't see anything wrong. They look at my blood work, my inflammatory markers are normal, I don't have red blood cell disease, or low platelet counts. No raynauld's. I don't have any major organ damage. I can't prove anything.

The only thing I have to go on is 11 years of high ANA's, my RNP, occassional low white blood cells, and the fact that I meet the criteria for Lupus, have muscle weakness associated with MCTD, & severe fatigue. It means nothing, if your ESR is normal to a rheumatologist.

My neuro cares what this rheumatologist did. He wanted her to work with him with my care and she totally blue me off like nothing was wrong. She's lucky I was able to contain myself from knocking the hell out of her with what I have been through and have her get in my face and say what she did. He tried to send me to someone else out of state but that didn't work out because I didn't have a way to get there. And I don't think it matters. They are probably going to think the same thing. I shouldn't have to prove I'm sick to anyone, I already know I am.

You all have been through it, you know how hard it is to get a diagnosis. Even if you've received one, it can get ripped away. It's easier to prove if the disease is severe, when it's not, what are you supposed to do to prove it? I just don't know how. Maybe I should have progressed with some form of severe damage, it hasn't happened.

SandyR
06-02-2011, 07:29 AM
No I can't do it. You look at me and you can't see anything wrong. They look at my blood work, my inflammatory markers are normal, I don't have red blood cell disease, or low platelet counts. No raynauld's. I don't have any major organ damage. I can't prove anything.

The only thing I have to go on is 11 years of high ANA's, my RNP, occassional low white blood cells, and the fact that I meet the criteria for Lupus, have muscle weakness associated with MCTD, & severe fatigue. It means nothing, if your ESR is normal to a rheumatologist.

My neuro cares what this rheumatologist did. He wanted her to work with him with my care and she totally blue me off like nothing was wrong. She's lucky I was able to contain myself from knocking the hell out of her with what I have been through and have her get in my face and say what she did. He tried to send me to someone else out of state but that didn't work out because I didn't have a way to get there. And I don't think it matters. They are probably going to think the same thing. I shouldn't have to prove I'm sick to anyone, I already know I am.

You all have been through it, you know how hard it is to get a diagnosis. Even if you've received one, it can get ripped away. It's easier to prove if the disease is severe, when it's not, what are you supposed to do to prove it? I just don't know how. Maybe I should have progressed with some form of severe damage, it hasn't happened.

I know it seems like you are all alone and no one else can possibly have experienced the same thing, but I'm telling you there are many on here who have, and still are, being treated exactly the same way you are describing. How do I know? I'm one of them. I feel like you seem to - just the thought of finding a new rheumy is exhausting, frustrating and enough to make me cry tears of anger. It's really just too much for me to think about right now and so I've decided to stick with the rheumy I have for a little while longer. My symptoms are fairly stable. It's been 2 years since my last major flare and although there have been many minor ones since then I'm just riding the wave until the time my symptoms are more severe again to see if it's that he really isn't taking me seriously or just not taking me as seriously as I would like. There are many other people on here who are sticking with their rheumy for the same reasons. It really is a fight to have to get the care we need for some of us. One that we shouldn't have to have but at least here you know that we all really do understand because we have had to fight our own battles with this too.

To answer your questions up a few posts - do you have to accept that things are this way? No. I don't think accepting it will change things. For me, I just find there are times I have to accept that I am not ready to fight another battle yet and that things will change when I am ready to do so. I also have to accept that my life is different now than it was before. But I don't have to like it or like accepting it or accept it without a challenge by just lying down and doing nothing. I'm able to accept these two things and still realize that the only way to make this better for me is to actively work at maintaining my "normal" life. I now have days where I can do all I used to do and feel better than fine and I have days where the bed is my best friend. I've learned that sometimes I need to have a few bed days to have an old life day. I've also learned that I don't have to accept the idea that this is the way it will always be. I consider myself a realist, an honest person and an optimist. Kind of a strange combination but it works for me. I know the reality is that I am sick. If I'm honest with myself I know that being sick means things aren't the way they once were before. But I have hope, lots of hope, and faith that one day things will change for the better because, to me, what's the point of living if not for hope, love and faith and love and faith have nothing to do with this disease. Don't give up hope! Acceptance of a situation is not the same thing as liking it or deciding it isn't able to be changed. Acceptance is not a lack of hope. It's just a realization of things as they are.

As to your doctors and autoimmunity and fatigue question (and I think it's a great one!) I think the reason they recognize the cause of fatigue in specific organ-related diseases like thyroid issues is because the thyroid (or heart or lungs or kidney or any other organ) are generally managed by one specialist specializing in that particular organ, all it's ins and outs and quirks and have (as a group of like specialists) spent much time and money researching that organ for what is and isn't "normal" for it and have come to recognize through this research why certain abnormalities are in existance for it. The autoimmune system is so much bigger than one organ. It's a whole body system, yet it is treated as seperate organs. Lupus is affecting your eyes? Go to the opthamalogist. Your heart? Call the cardiologist. Now it's in the kidneys? Time to call the nephrologist. Just the joints? Rheumatologist is already on speed dial. It's all seperate and, with a few very rare exceptions, we are treated as seperate individuals with seperate diseases under this system. There is no information sharing in my experience. All the sharing has been at my urging of passing copies of tests and records back and forth and even then the 'ologist' still asks what the other is doing for this or that organ instead of trying to work together to piece the puzzle into a whole picture of what is going on. Add onto that the fact that the (US) $$$$s for disease research just is not there in the autoimmune world and it is a complicated problem. Sure there are plenty of individuals doing research and lupus research seems to have increases over the last few years but when you compare the funds and amounts of research being done in another broad-spectrum disease, like cancer, to what is being done in the autoimmunity world AND when you further compare the numbers of populations of people wholely affected by this disease research and outcome, it's ridiculous! The deck is stacked against us. So how do we change this? We write our legislatures other governing bodies. We promote disease awareness in our world corners. We discuss and talk and keep talking about what this disease is and how it affects us. We work, as a group, to raise awareness of the collective consciousness of the world population as a whole and we wait patiently for these things to get the cogs moving.

steve.b
06-02-2011, 07:54 AM
I consider myself a realist, an honest person and an optimist.


this is why we love sandy.
our rock!!!!!!!!!!!!!!!!

tgal
06-02-2011, 08:08 AM
What a wonderful post Sandy! I do have to correct one thing though. Just because there is major organ damage doesn't mean you will get a diagnosis. I was told for well over a year that my seizures had nothing to do with my illness. The problem I found with each specialist is that they won't look at the whole picture so often times we can get get a diagnosis either. This is a horrible disease for many of us and the doctors want to ignore us

SandyR
06-02-2011, 09:04 AM
What a wonderful post Sandy! I do have to correct one thing though. Just because there is major organ damage doesn't mean you will get a diagnosis. I was told for well over a year that my seizures had nothing to do with my illness. The problem I found with each specialist is that they won't look at the whole picture so often times we can get get a diagnosis either. This is a horrible disease for many of us and the doctors want to ignore us

I hope it didn't sound like I was saying it that way because if so I meant it the way you said it. Thank you for clarifying that. Likewise, you can have almost no major organ damage and be sick/diagnosed.

tgal
06-02-2011, 09:38 AM
I hope it didn't sound like I was saying it that way because if so I meant it the way you said it. Thank you for clarifying that. Likewise, you can have almost no major organ damage and be sick/diagnosed.

Maybe I just read it wrong and I hope it didn't sound like I was upset! I just wanted everyone to know that it can be a long ride no matter what. You, of course said everything perfectly. I, on the other hand, am really cranky today so if I saw something rude please ignore me everyone. My daughter has been gone since last Sat. Even on top of missing her that means that I am locked in the house because I can't drive. Yes, I will make a quick trip to the grocery store if my head feels clear but basically there is no driving for me. Thankfully my niece is coming this afternoon and we are going to the store. Yay! I am not sure if that is what has me so cranky or if it is that the last steroid shot is wearing off and I am hurting more. Either way I will do my best to not be rude. If I am it is Mari the poster and not Mari the Mod. I love each of you and will do my best to inhale before posting

SandyR
06-02-2011, 09:42 AM
Maybe I just read it wrong and I hope it didn't sound like I was upset! I just wanted everyone to know that it can be a long ride no matter what. You, of course said everything perfectly. I, on the other hand, am really cranky today so if I saw something rude please ignore me everyone. My daughter has been gone since last Sat. Even on top of missing her that means that I am locked in the house because I can't drive. Yes, I will make a quick trip to the grocery store if my head feels clear but basically there is no driving for me. Thankfully my niece is coming this afternoon and we are going to the store. Yay! I am not sure if that is what has me so cranky or if it is that the last steroid shot is wearing off and I am hurting more. Either way I will do my best to not be rude. If I am it is Mari the poster and not Mari the Mod. I love each of you and will do my best to inhale before posting

What did I say earlier - no need for apologies, Mari! You didn't sound nasty or angry to me. I really did appreciate the clarification. I think you know that I know you and how you are and your personality pretty well by now and I was by no means at all offended. I'm very glad you cleared up the confusion because if you had some and you already have a good understanding of how this all works then I am sure others would have had some too and it needed clearing up. Let's kiss and hug and make up and be best of friends again. lol.

The stuck at home thing sucks. Plain and simple. I'd be going crazy running circles around the house by now and calling everyone in a 20mile radius to see if they wanted to "pop over" and perhaps go out for a bit if it were me.

merryalliss30
06-02-2011, 10:01 AM
All I know I can do is keep check on my blood counts & ESR every so often now and if something goes wrong again, like pleurisy, make my doctor do an x-ray, or do anything that might link me to this disease, see what my neurologist can do to actually diagnose this nerve disease I have. But I think right now, there just isn't enough for a rheumatologist to open their eyes up to the possibility. I will consider going back later on unless my neurologist insists on it later this month that I go ahead and do so, but right now, I think I will just let my internist take care of it.

I agree Sandy, keeping hope is about the only thing that can carry you through this.

merryalliss30
06-02-2011, 12:47 PM
Well it might walk and talk like HSV-1 but my IgG test was negative again.

SandyR
06-02-2011, 01:03 PM
Well it might walk and talk like HSV-1 but my IgG test was negative again.

People hear the sounds of hoofs falling and think horses but sometimes hoofs falling can be zebras. They may look and sound like horses but as a whole they are an entirely different breed.

Peridot20_Gem
06-02-2011, 02:43 PM
Maybe I just read it wrong and I hope it didn't sound like I was upset! I just wanted everyone to know that it can be a long ride no matter what. You, of course said everything perfectly. I, on the other hand, am really cranky today so if I saw something rude please ignore me everyone. My daughter has been gone since last Sat. Even on top of missing her that means that I am locked in the house because I can't drive. Yes, I will make a quick trip to the grocery store if my head feels clear but basically there is no driving for me. Thankfully my niece is coming this afternoon and we are going to the store. Yay! I am not sure if that is what has me so cranky or if it is that the last steroid shot is wearing off and I am hurting more. Either way I will do my best to not be rude. If I am it is Mari the poster and not Mari the Mod. I love each of you and will do my best to inhale before postingMari,

There's no need to apologise to anyone, we all get in the same boat and be snappy even if we don't realize it at times and this illness is enough to drive we all soft. When you've know people a while like sandy said you know it's really not them in general.

Being in the home like me does you no good and missing your daughter is an extra boat load of worry having been used to her around you, i hope your break with your niece does you the world of good and gives you a break.

Enjoy mate while you can and we're all thinking of you mari, don't forget that.

((Huggggs you way Terri)) xxxxx

merryalliss30
06-02-2011, 03:40 PM
I am in such a bad mood. Kind of want to bury a hole in the ground for myself or beat my head in the wall until I pass out, kind of frustation. It's pissing me off I keep getting infected with something and these autoimmune medications quit helping me.

I'm starting to wonder if my immune system before it went overactive was being attacked one too many times from all sorts of infections, which I guess it was easy for me to get bronchitis/flu or whatever else, since I've smoked all my life, and these lip infections, whatever it be, still think it's HSV though I cannot test positive on a test for a past infection. Maybe that wore my immune system out and made it capable for me to develop autoimmunity? So instead of dealing with that issue at hand, chronic infections, I'm taking medications that will weeken my immune system and cause all kinds of havoc if it takes a notion to. When I took doxycycline & mobic together, my RNP went from 7.3 to 3.4 within 1 1/2 mths. Amazing drop in autoantibodies huh? Doxycycline (antimalarial antibiotic), it's strong stuff. I felt great on it but did not get to continue treatment. I went on to using plaquenil and it worked great too until I caught a cold.

But the stuff taken for autoimmune disease does nothing to protect you from getting sick. And maybe that's part of the problem too.

merryalliss30
06-03-2011, 10:16 AM
I'm about ready to take my Plaquenil & Imuran and toss them both in the trash. With the way I am feeling right now, there is no point in even trying.

merryalliss30
06-03-2011, 01:37 PM
Sorry, I'm just frustrated. Didn't mean that. lol.

tgal
06-03-2011, 01:50 PM
Don't worry about it. I doubt there is anyone on this board that hasn't felt that one time or another. Take a few deep breaths. Cry and let it out if you can. It's all going to be OK. Different but OK.

merryalliss30
06-03-2011, 05:24 PM
Thanks for understanding. Maybe if I start taking my antidepressant daily for awhile, my stress level from being sick, will go down some. I hate dwelling on that so much but it's just constant thoughts about how awful I feel and what am I going to do to stop it. Sometimes I just want to smack myself crossways for that.

tgal
06-03-2011, 05:37 PM
Hey Maryalice. There is something that I would like to tell you that may, or may not, help you with the antidepressant issue. I know a lot of us have a difficult time with the IDEA of taking meds for depression. For me personally I thought I was saying that I couldn't handle my life. I thought it meant that I was weak. I felt like I was letting myself down if I took them. I know a lot of others here felt the same way.

As you know these diseases (AI Diseases) can mess with our brain. Even people without CNS involvement often get forgetful, have brain fog and several other issues. Is it then surprising that our brain, where we have all the chemicals that keep us from being depressed get kind of whacky? You would take whatever medicine they gave you if you had a lung infection. You would take the meds they give you to stop your heart from racing and you would do it all happily because your body is being hurt. It isn't your fault so I believe you would most likely take those every day without a problem. You need to look at the antidepressant that same way. These diseases mess with our moods and memory and that medicine you have may be able to help level out things so you can move on to fighting the next battle.

I will keep you in my thoughts and hope I didn't sound too preachy

Linda From Australia
06-03-2011, 05:58 PM
HAve you thought about blogging your thoughts, you can let out your frustrations as often and as long as you want. That way you can also keep track of your thoughts as well as the information you find out. Then it is very easy to find when you want to. I know at times I have posted some things and I can never find them again. I hope that by blogging will be a better consequence than the bruises you suffer from smacking yourself crossways, just like you said you do. Perhaps it will help with your constant thoughts about how awful you feel. I do really hope you start to feel better soon, it is horrible to feel frustrated and sad most of the time.

I have never written a blog, but I might just try some day. I enjoy reading people's blogs and when I have time I leave messages. Especially during the school holidays and on the weekends when I have more time.

merryalliss30
06-04-2011, 07:56 AM
I don't mind taking an antidepressant, long term use messes me up, that is why I only use it as needed. And no, I haven't thought about doing a blog, I don't think I could go back and read it if I did, the negativity in that would be unreal. I'd probably end up crying from my own misery.

I don't really see anyone with autoimmune issues that are really able to go into remission and stay there for long periods of time. You here it here and there, but most everyone continues to suffer even with the diagnosis and treatment. Treatment aims at stopping the disease from progressing and getting worse, but does it work?

I don't feel like I'm doing myself any favors taking plaquenil and imuran, when I am sitting here feeling like I am going to drop dead from exhaustion. I don't know how to make my immune system act normally so I don't feel so sick but I just don't think this is the answer. If it was, it would be working better than that.

Linda From Australia
06-04-2011, 11:31 AM
How long have you been on Plaquenil and Imuran

tgal
06-04-2011, 03:31 PM
I don't mind taking an antidepressant, long term use messes me up, that is why I only use it as needed. And no, I haven't thought about doing a blog, I don't think I could go back and read it if I did, the negativity in that would be unreal. I'd probably end up crying from my own misery.

I don't really see anyone with autoimmune issues that are really able to go into remission and stay there for long periods of time. You here it here and there, but most everyone continues to suffer even with the diagnosis and treatment. Treatment aims at stopping the disease from progressing and getting worse, but does it work?

I don't feel like I'm doing myself any favors taking plaquenil and imuran, when I am sitting here feeling like I am going to drop dead from exhaustion. I don't know how to make my immune system act normally so I don't feel so sick but I just don't think this is the answer. If it was, it would be working better than that.

The problem with "only taking them when needed" is that it takes at least 6 weeks for them to get in your system and work the way they should. Popping a tablet when every you want isn't really doing you any good

Peridot20_Gem
06-04-2011, 04:35 PM
Mari, i quite agree i was on the plaquenil as you know last time for 5wks before i saw any affects just with skin.

A large amount of member's know popping a pill here and there, you don't get no benefits off the drug.

merryalliss30
06-04-2011, 06:07 PM
I started taking antimalarials april of last year, doxy for 1 1/2 mths, then later on, plaquenil for 5 mths, stopped it for about 2 1/2 mths, and restarted in May. I've been on the combination of plaquenil & Imuran for about a month now.

Lexapro has something in it that calms down anxiety also, and it takes an immediate effect on me. I cannot take antidepressants long term. I start crying without reason and get really depressed. I overdosed on Zoloft 11 years ago. I continued to stay suicidal and was flopped from one antidepressant to another. I did not get over the depression until I stopped taking antidepressants. As you can see, that is why I am hesitant at taking them long term now. I am not in a horrible depressive state and I surely have no urge to go into one.

I don't even know how to say this, but I guess it's simple. If things don't change for me and I will give it a couple of years to see, I don't plan to live out my life, being this way. I don't want to give up. I want things to change. But I don't feel like I can take it if it doesn't. It's a major burden on my heart thinking about leaving everyone I love and doing such a thing, but the way that I feel, it's just too much to tolerate.

tgal
06-04-2011, 07:38 PM
With ideas like that it would be best for you to speak to a professional. Many here have been helped by them but this is way over our heads here at a forum. If you follow doctors advice and take meds as you should, there is a life with an AI disease. Many people talk about the joy in their life and Rob just began a new journey today and it was wonderful! There is no shame in needing professional help and many of us have spent time with them trying to wrap our head around what is going on with us but once one enters the " I am not going to live with this" way of thinking I must step in and remind everyone here that we are not professionals. We can't make someone go to the doctor or take their meds. We can't make anyone want to live their life. All we can do is tell of our experiences and hope people listen.

You are loved here Mary. We will be happy to stand with you in an effort to take your life back but we cannot give you any advice if you don't want it. If you don't want to do what the doctors say you absolutely have that right. It needs to be stated for everyone else here that taking your meds is what gets you healthier. It takes months or even years to get there but it can happen. Maybe not normal like before but a new normal that can be enjoyed! To those reading this thread please understand that not taking your meds is the single best way to have this disease kill you. I don't mean to sound harsh but it is a harsh reality. Meds must be carefully discussed with your doctors. If you make any changes to your meds please make sure that you go over them with him/her.

There is a life with Lupus however we must be willing to put some work into it.

merryalliss30
06-05-2011, 03:55 AM
I'm not planning to stop taking any of my medications unless my doctor okay'd it. We've already discussed the lexapro and he is fine with me taking it as needed. It is weird that I am not living in a day to day depression yet feel that way. Once I typed it and read it, I had to seriously question myself if some form of depression is there. I think it's more of an inability to tolerate being sick. I am going to talk to my doctor about it at my next appt. I've already went through therapy and I was taught how to deal with depression, not react to your thoughts, ask for help, and do things to change why you are feeling that way the begin with. But I really don't know how to change being sick. A therapist is not going to be able to make me happy over this. I need a comfort zone. I can live with being sick but I can't deal with pain that keeps me from getting out of bed or if I am crying because it's so bad nor can I stand unrelenting fatigue. I have medication that stops severe pain but I can't use it very much. I need one that calms it down day to day also. The fatigue is the issue I am in serious question of whether it can be controlled or not and it's pretty much what is tearing me apart. That may sound stupid but I just can't stand it.

Linda From Australia
06-05-2011, 03:59 AM
I can understand that you cannot stand the pain and fatigue. You just sound like me when I was first diagnosed. I wanted to know everything I could about Lupus. The researching just about took every spare moment of my day. All I could think about is that my life as I once knew it was over, and there is nothing more to look forward to. I was fortunate that I had someone to talk to. My daughter is autistic and she sees her psychologist every 2/3 weeks, and at the time of my Lupus diagnosis 10 months ago, she was seeing her psychiatrist every month. They spent more time talking to me than her. They reassured me that there is life after diagnosis.

I then found WHL, and started to learn about the disease. Everything something new came up, I would learn more about that issue. At times it is daunting the amount of information that is on the Internet, in books and even coming out of doctors' mouths. There is so much confusion about this disease. Well that would be because not much is known about Lupus.

My daughter is now 23, and she has had significant mental health issues all her life, and being autistic, it is very hard to treat her cognitively. So she relies on medication to keep her stable. Her psychologist said something really important to me. He told me I am bargaining again. Meaning, whenever there is a problem with my daughter I research so much to try and find an answer to fix her current problem. He told me that I am trying my hardest at the moment to try to fix my Lupus. He acknowledged that I am doing all the right things physically to keep as healthy as possible, but mentally, I need to accept the fact that I am sick with Lupus, and there are no answers. There is nothing i can do to MAKE myself get better. There is no cure for Lupus, and trying to find a solution to cure me is putting me at risk of making me sicker through the stress.

So that is when I decided to LIVE with LUPUS. Lupus is like a birthmark on me. It doesn't matter how hard I try to hide it, it is always with me. I can pretend it isn't there, but when i lift up my shirt, sure enough, there it is. I can live with the birth mark, or try to cut it out of my life and make massive scars on my skin, and possibly make me sicker because I have caused so much damage to my body by trying to et rid of it.

What I do now is to chat on the chat feature, ask people what they are up to. Encourage people when they feel down. Comment on people's posts, attempt to tell some jokes, which I might add are pretty pathetic, but people laugh at times, because they think they are funny, or at least they think that I am a funny Australian who doesn't really know very much at all.

When I am feeling down, I let some people know, and they are there to hold my hand through the hard times. They don't try and tell me how to fix things up, but they are just there to offer me some support. There are some very caring people here on WHL who are very good at holding our hands, even though it is from thousands of km away.

I am not attempting to tell you what to do Mary, but you seem to be struggling with trying to understand this terrible disease. May I offer you some advice. Have a look at some of the other threads, and try to have some conversations with some other people. Find out what they get up to and how they cope with their difficulties. Also, try and find some of the threads where people have a laugh, and have fun with each other. If I didn't find WHL, I know for a fact that I would be a lot sadder and probably a lot sicker. I am blessed by knowing so many people who are such wonderful people.

I have totally transformed my life since having being diagnosed with Lupus. I wish like anything that I didn't have Lupus, and really hope that there is a cure very soon. But if I had to go into a time machine and go back to the time before i developed Lupus, I would honestly say I would rather have Lupus than not have it. Because I am so much a better person now. I am serious, having Lupus has opened my eyes so much, I am a far happier person, more understanding and more loving.

I can't believe I am saying this. Mary thank you so much for your posts, you have made me realise how wonderful my life is now, and most importantly, how wonderful I am. (sorry for sounding as though I am bragging, but I am a thousand times a better person now)

merryalliss30
06-05-2011, 04:52 AM
I was diagnosed with Lupus 11 years ago but the diagnosis was taken away from me for my other doctor believed it to be fibromyalgia, though the rheumatologist he sent me to said no way. He really doesn't believe you can have an autoimmune disorder unless you have high inflammatory markers but last year he told me I had the symptoms of it and sent me to a rheumatologist for evaluation of MCTD with myalgia, and she totally blew me off. My neuro wanted to send me to a rheumy out of state, as he told me, you can have Lupus with normal inflammatory markers, he's had plenty of patients who have never had high ESR's. But I couldn't get the ride in order to go.

I have been told I have chronic fatigue syndrome, autoimmune disease, mild lupus, fibromyalgia, myofacial pain syndrome, and now possibly mixed connective tissue disease or multiple sclerosis. I am sick of not having a clarification as to what is wrong. I can't believe a person can be so distressed with being sick and cannot get one stupid diagnosis that would make any sense to explain why they feel the way they do.

I think if my doctor would start treating me with doxy again and an antiviral, it would stop what causes my medications for autoimmunity to quit working, because every time I end up with an infection, I can't get past that.

Linda From Australia
06-05-2011, 05:16 AM
Mary I was editing my previous post when you wrote a reply. Please read my pervious post, I hope it helps you.

merryalliss30
06-05-2011, 06:12 AM
That's one amazing story. I wish that I could say it helps but I can't give up trying to find something that works, and if it adds more stress into my life, it will have to, because I feel like if I don't find a way to calm it down, that I'm not going to have one. The only thing holding me on now is the chance that giving it some time, it might get better.

Linda From Australia
06-05-2011, 06:25 AM
I am so glad you have figured out how to go into remission. After you have enjoyed your time in remission, please come back to WHL and let us know how you are going. It was nice chatting to you. All the best Mary.

merryalliss30
06-05-2011, 08:47 AM
If a medication can make your antibody disapear and make your ANA go negative, it puts you in remission, right? Yes I know the medication that may do that. Can't sware by it but I know when I took it, my antibody dropped by half and I felt better, and when I stopped taking it, my antibody shot back up and I got sick again, doxycycline, and it would prevent me from stupid infections to make me end up sick all over again. Plaquenil and Imuran doesn't do that. I want off the toxic medications. Find a suppliment to support my immune system. Start exercising. Stop smoking. And kick this problem right in the ass. Forgive me for my stupidity, but I really think taking doxy long term would be the answer to my prayers. I took it last year and I know what it's capable of doing.

tgal
06-05-2011, 09:17 AM
Because the comment " Get off the Toxic Medicine" and supplement came up in this thread I want to share a story by our wonderful Leader, Susie. I am going to make this thread a "sticky" but I want the post to be put in this thread as well. It is very important that everyone hears this story. All of us would love to be able to get off the meds but that is NOT a viable option. Please read the story below and see why


How To Get Banned From WHL

Dear WHL Family;
There are several ways that you can get banned from WHL and they are listed in the board rules. However, I wanted to discuss one way that will ensure a permanent ban from this site:
If you submit a post that, in any way, intimates that you have found, are the recipient of, know of, have possession of, a CURE for Lupus that does not include regular supervision by a medical doctor or the continuation of medical treatment and prescribed medication, then you will be immediately banned, for life, from WHL!
If you submit a post, making the above claims, and asking members to contact you, via your e-mail, so that you can peddle your supposed cure, you will be immediately banned, for life, from WHL.
If you berate, demean, or otherwise belittle a member of WHL who gives you a warning, who exposes your intent, or who requests that you discontinue or modify your approach, you will be immediately banned, for life, from WHL!

Now, let me explain my reasons:
WHL is a support group where we provide comfort, support, understanding, research, answers, and acceptance for anyone suffering from an auto-immune disorder.
This can be a very frightening disease which can, in its worst forms, still be fatal. It is a chronic disease, meaning that we may have some form of it for the remainder of our lives.
As such, many of us suffer greatly due to this disease and we often reach a point where we simply want our lives back, we want the disease to go away, and we want to be healthy again. In our efforts to do this, we are often willing to try almost anything that promises that it will accomplish this for us. Knowing of this possible desperation, there are those who claim that they know of a cure, that they've been cured, that their sister, cousin, mother, brother..whatever, has been cured. They also go so far as to claim that our current medications are poisoning us, that our doctors are liars and are only after our money, and that we (ourselves) want this disease because we are unwilling to try their proposed cures. These people are (as Rob so eloquently described them) 'Snake Oil Salesmen' and 'Charlatans'. People who prey upon the desperation of ill people in order to make money.
My daughter, who lost her life to Lupus, in her desperation while away at college, stopped taking her medications and tried one of these proposed cures. As a result, she suffered irreparable damage to her heart (which was being protected by the Prednisone that she abruptly stopped taking in order to try the remedy suggested by one of these Snake Oil Salesmen). A short time later, she lost her life when the damage to her heart caused her heart to just stop functioning entirely!
So, I am personally and vehemently against any of these people being allowed on WHL. I will not allow them to prey upon any family member here. WHL is here to offer protection and to be a safe place for each member. As such, Rob, Tgal, and I have formed a wall around each of you to shield you and to protect you from persons who do not comply with the founding principles of WHL!
Thank You All for all that you do in support of one another!

Peace and Blessings
Namaste
Saysusie

rob
06-06-2011, 07:53 PM
Maryalice,

Claiming to have knowledge of, and/or the promotion of bogus "cures" is not tolerated in this forum. One person having multiple accounts is also against the rules, and attempting to delete all 157 of your own posts (I have restored them) in an attempt to make threads unreadable is also very much against the rules. You have been banned for multiple violations of the Membership Agreement.

And finally,

DO NOT UNDER ANY CIRCUMSTANCES RETURN TO THIS SITE UNDER A NEW ACCOUNT AND USERNAME. I WILL FIND YOU AND I WILL BAN YOU EACH TIME. STOP WASTING YOUR TIME, AND MINE. PLEASE GO AWAY.

This thread is closed.

Rob

Moderator

rob
06-07-2011, 11:23 AM
Bump to top.