Medical Forum / Diseases and Disorders / Lupus / May 2005
How do I boost my immune system?
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JQ - 19 May 2005 16:59 GMT Hello all! I am wondering if anyone has advise on boosting ones immune system if they have Lupus. I am always very very tired and am not taking any medication to avoid flares. I'm afraid of getting a flare up and being that I am always getting sick I'm afraid I might get a bad one. Any flus or colds that come around me I'm guaranteed to get it and when I do I can't fight it off. I've been using echnacia and multivitamins and Vitamin C, I drink and eat a lot but I'm getting just so annoyed at being sick all the time! My White blood count is always low between 3 and 4 and should be atleast 5. Any advice? Much appreciated!!! Jacquie
KCat - 19 May 2005 17:46 GMT Yes - don't.
Your immune system is already in high gear and is what is depleting your white blood cell counts. What happens (in very simple terms) is that one tyoe of WBCs is triggered into destroying another type of WBC. This is why the overall numbers are low. If you further boost your immune system, you run the risk of increasing the antibodies and other immune components that cause this destruction of cells and the inflammation of tissues. Echinacea and other "immune system boosters/modulators" are *not* recommended for patients with autoimmune disease. Especially lupus.
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KCat
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> Hello all! I am wondering if anyone has advise on boosting ones immune > system if they have Lupus. I am always very very tired and am not [quoted text clipped - 8 lines] > Much appreciated!!! > Jacquie JQ - 19 May 2005 18:04 GMT Hi - Oh my - I had no idea. Wow so complicated! I take so much echinacea and try so hard not to get sick. I thought if you didn't have enough WBC you would get more sick. But when I get sick I can't get rid of it, doesnt' that mean my immune system is shot? Thank u for your response!!!, Jacquie
KCat - 19 May 2005 19:50 GMT > Hi - > Oh my - I had no idea. Wow so complicated! I take so much echinacea and > try so hard not to get sick. I thought if you didn't have enough WBC > you would get more sick. Of course, it's so much more complex than that. There are (for the purposes of this discussion) five major types of WBCs (Leukocytes). Within one of those types (Lymphocytes) their are 5 more types of cells. There are two types of "Polys" - making a total of 10 different cell types. I'm not going into the Red blood cells and their ilk for this discussion.
White Blood Cells: Leukocytes Basophils Eosinophils Polymorphonuclear cells Granulocytes Neutrophils Monocytes Lymphocytes T Cells CD4 T Cells CD8 T Cells Natural Killer Cells B Cells.
Most of these play some role in autoimmune disease. Basophils and Eosinophils not so much (they're more involved with allergic responses.) The most important cells in this game are the Lymphocytes and Granulocytes. B Cells secrete antibodies which are the immune components that tell the rest of the immune system (the T Cells) what should be destroyed or otherwise altered. In lupus, the B cells are pumping out *auto-antibodies* which are antibodies directed at your own tissues. Neutrophils are important to fighting certain kinds of infectious microbes.
The immune components that take part in the immune response are (in part):
Albumin Glubulin Alpha Globulins Beta Globulins Gamma Globulins (IgA, IgE, IgG, IgM, IgD) Cytokines
I don't tell all you this with the expectation that you'll remember it all but that you see how complex it is... and I'm only giving you an overview.
Yes, you get sick because parts of your immune system are suppressed - because other parts of the immune system are damaging or altering those suppressed parts. But not because the entire system is gone (though at some point, this does happen in severe cases.)
In general: Your B Cells are overactive. They produce too many Igs and autoantibodies.
Your T Cells - CD4s are "helpers" - they increase immune responses. Natural Killer cells (NK) do what the name implies, they kill other cells (usually for the purpose of destroying an infected or damaged cell when the immune system is working *properly*). Other T-Cells suppress immune responses (in a healthy body, one purpose of this is to prevent injury such as a cut or break from becoming so inflammed that it causes excess tissue damage/scarring). Still other T Cells signal other immune cells to perform some other function such as secreting cytokines and antibodies! In the lupus patient is that the helper cells help too much, the suppressors don't work enough, and you get more autoantibodies for the killer cells to recognize and attack.
> But when I get sick I can't get rid of it, > doesnt' that mean my immune system is shot? Basically - your immune system is "confused." It is confused about what to defend itself from and what to protect. It attacks your own body (cells, connective tissues like collagen and elastin, joints) but isn't as responsive to invading organisms.
From Dr. Wallace's The Lupus Book. "First, the microbial killing function of neutrophils, a type of white blood cell, is altered, and second, certain complement* components critical in the killing process are inhibited."
and
"there is evidence to indicate that many lupus patients have circulating blood factors which inhibit a component of complement from being attracted to an inflamed** cell."
and
"cytokine*** dysfunction in SLE decreases the body's ability to killl foreign organisms"
I'll end it there because there is still more about what goes wrong where and it involves the spleen and more detail about the immune complexes. Dr. Wallace does a much more concise and accurate job of explaining this in his book "The Lupus Book" with good diagrams of how the cells interact and what this means in terms of your immune system health. If you don't have this book, I highly recommend it. It's written in very clear terms and as I said, will explain the mess I gave you above much better than I did. :) Plus, it just has a lot of important info on symptoms and treatments that are, IMO, very important to the patient being able to be their best advocate.
*complement - this is a critical chemical made by the immune system and part of a number of immune responses
** for clarity, I'd substitute "inflamed" with "damaged or infected" because we're talking about the ability to fend off infection for now.
***cytokines - these are chemicals that signal cells to do whatever it is they do and there are many, many different cytokines.
I know this is very confusing and complex and that's really the point of it all.
What it comes down to is that we don't know how a lot of these alternative medicines work when they say they "boost" or "modulate" the immune system. Some may actually be beneficial. But some are pretty much considered not worth the risk (echinacea being at the top of the list, I'm afraid.) That said, I have heard from people that take echinacea without problems. But the issue becomes - if it isn't helping you, and it may even be ramping up the wrong parts of your immune system - then maybe you should reconsider if you should be on it. If your doctor is aware that you are taking it, I would get his or her advice on whether or not it should be discontinued and if so, should it be tapered. I know nothing about this drug other than the claim of it boosting the immune system. So I don't know if sudden discontinuation would be dangerous in any way.
now... if you waded through all that... you're a very brave person. :-)
best wishes and hope this isn't too overwhelming, kCat
JQ - 19 May 2005 20:02 GMT KCat Thank u so much! I am going to go out and get that book as soon as I can. What would we do without the internet eh!? You are a very kind person to go to all that trouble and type all the info up for me and everyone. Everyone on this site is incredible! I'm so glad I found u all. So much the doctors just don't get into or know. It's because of the internet I was able to diagnose myself and suggest this to the doctor and they diagnosed me. Well since I haven't been on echnacia long and it hasn't been working I'm going to try stopping it. And look into anti flare up meds. Maybe that will help keep my immune system controlled. Much appreciated! Jacquie
KCat - 19 May 2005 23:28 GMT > all. So much the doctors just don't get into or know. It's because of > the internet I was able to diagnose myself and suggest this to the > doctor and they diagnosed me. isn't that sad. But I see it more and more on here. It's basically what I had to do though even with all the obvious symptoms, I didn't get a diagnosis for some time. It took several repeated low blood counts and a couple of rounds of proteinuria to get them to take me more seriously. Plus just seeing that I wasn't a drug-seeking hypochondriac but someone who really wanted to be well again.
keep us updated and glad you found us, too!
KCat
Andy - 19 May 2005 20:16 GMT []
> Dr. >Wallace does a much more concise and accurate job of explaining this in his >book "The Lupus Book" with good diagrams of how the cells interact and what >this means in terms of your immune system health. If you don't have this >book, I highly recommend it. Ensure you get the latest edition - it's the second I think. (If so, it's ISBN 0-19-513281-5 published in 2000.)
>now... if you waded through all that... you're a very brave person. :-) > :)  Signature Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!
CP - 20 May 2005 02:52 GMT KC ... I appreciate the refresher. This will help me better understand my lab work. Thanks. cp
> Of course, it's so much more complex than that. There are (for the purposes > of this discussion) five major types of WBCs (Leukocytes). Within one of [quoted text clipped - 18 lines] > > Most of these play some role in autoimmune disease. Basophils and <snip, snip>
KCat - 20 May 2005 05:02 GMT > KC ... I appreciate the refresher. This will help me better understand > my lab work. Thanks. cp I'm jealous. :( I miss the lab. Not my co-workers, but the lab. And my little "children" (tissue cultures)
CP - 20 May 2005 23:03 GMT LOL, I understand, I think. My mother was a medical technologist way back when it meant doing the lab cultures and preparing the serums, etc., "by hand". I visited her in the Chemistry Lab and the Histology Lab and the Pathology Lab (which were all adjacent to the Morgue) many, many times while growing up. I was often put to work sorting pipettes and things of that sort. When I was a teenager I was permitted to prepare slides for the brand new electron microscope, a huge deal at the time. Later she was involved in research work in the Pharmacology Dept of a major teaching hospital. Absorbed a fair amount of information during those visits! When Dad was in the hospital a few years back, Mom and I snuck a visit to the old Labs. At that time the rooms (the former labs) housed the ventilation system! It felt so sad. Much of the work Mom used to do is now done by computers.
cp
>>KC ... I appreciate the refresher. This will help me better understand >>my lab work. Thanks. cp > > I'm jealous. :( I miss the lab. Not my co-workers, but the lab. And my > little "children" (tissue cultures) Shelagh - 19 May 2005 18:04 GMT Echinacia is a big 'NO NO' for lupus patients cause our immune systems are already booted up on their own to a degree that is too high! The echinacia just enhances that effect and it is undesirable for lupus and in fact can trigger a flare at worst, at best make the patient feel lousy. With lupus your immune system is already hyperactive and doesn't need a boost; it needs to be quelled or calmed down with drugs that are anti inflammatory like prednisone and/or NSAIDs...chemo and antimalarials also play a role in that. HTH!
 Signature hugs, Shelagh http://clik.to/lupus for Lupus Invisible in Plain Sight
> Hello all! I am wondering if anyone has advise on boosting ones immune > system if they have Lupus. I am always very very tired and am not [quoted text clipped - 8 lines] > Much appreciated!!! > Jacquie BJ - 19 May 2005 19:16 GMT Hi Jacquie, What ever you do, do not try to boost your immune system. Please don't take echanasia. Vitamin C and a multivitamin are okay though. My WBC is always between 2 and 3. As you can see, it is low. I rarely catch colds, so I am not sure a low count is all that much of a problem. I did get shingles last year, and I suspect that may have been because of my low count. It was only slightly above 2 at the time. I was also rundown and tired after returning from a trip. Be very careful about what you take. Boosting your already hyper immune system can really do you in. BJ-Sk. Canada
> Hello all! I am wondering if anyone has advise on boosting ones immune > system if they have Lupus. I am always very very tired and am not [quoted text clipped - 8 lines] > Much appreciated!!! > Jacquie JQ - 19 May 2005 19:54 GMT Oh my!!!!! Wow I'm clueless. I totally feel run down all the time. So how do I boost my WBC? Should I worry about it? It's been low for years and I'm always sick and tired. I only recently started taking Echnacia because of a new job I just can't be sick. How can I avoid getting sick if I can't take vitamins? What do you do? ANd what do u do once you do get sick? Would meds like anti flare up drugs help? I'm currently not taking anything because I'm afraid of side effects. Was researching into taking Plaquenil but there's too much risk. I would almost feel like I was doing something wrong to try to weaken my immune system. I'm glad you mentioned this. I've been overdosing on echnacia this week as I feel yet another cold flu coming on. Don't we need WBC to fight flus off? I thought they are the immune system fighters. It makes no sense to me, this goes against everything I thought. So confused now, this is all so new to me, i don't know what to do but I'm so tired of catching everything!!! Thanks, Jacquie
Mermaid - 19 May 2005 20:08 GMT Hi Jacquie, What I try to do is eat well. No junk food and plenty of fresh vegetables and fruits. And lately I have backed off on so much meat. I still eat fish. Eating right, really is good for you. I have been sleeping better too since I changed my diet. That helps you fight everything that comes through the window by getting better rest. How long has it been since you were diagnosed?
Nice to meet you, Paulette
> Oh my!!!!! Wow I'm clueless. I totally feel run down all the time. So > how do I boost my WBC? Should I worry about it? It's been low for years [quoted text clipped - 13 lines] > I'm so tired of catching everything!!! > Thanks, Jacquie KCat - 19 May 2005 23:47 GMT > How can I avoid getting sick if I can't take vitamins? I don't see any reason you can't take vitamins. Just make sure your doctor knows because some drugs are bound by certain minerals and won't be absorbed properly (if, for example, you had to go on an antibiotic for any reason.)
> What do you do? what I do... well, I haven't had but one cold in about 7 years. Mostly because I'm pretty much home all the time and have limited contact with others. For some reason when hubby gets a cold, I don't usually catch it. And don't think we don't have plenty of contact such that I could. ;-) (sorry, too much information <g>)
I think so much of it is resting whenever you can. I can't say I eat right (where's my oreos?) but I'm sure if I did that would be helpful. Wash hands thoroughly after contact with others - like if you go shopping or a couple of times a day when at work. Most of the bugs we catch are from hand-to-mouth transfer.
Know your triggers. If you tend to flare after sunlight exposure, find ways to reduce that with long-sleeved cover-ups, hats, sunblocks. If you trigger from exposure to cleaners or other chemicals, do what you can to avoid those. We go to the 8:30 church service which is lower attendance because i get overwhelmed by the perfumes and colognes at the 11:00 service. little things like this can reduce your reactions.
how is your hemoglobin? your blood cell counts can be low or low-ish without having a major impact on your fatigue. But if you're a bit anemic, this can add to fatigue.
Fatigue is probably the one universal - or almost so - lupus sypmtom. And it's cause is really not well-understood. So the only way to fight it is to fight the disease itself and do those little things for yourself that everyone should do really. Eat right, exercise, rest when the body demands it (if you can.) I have found that when I'm fatigued one thing that can *sometimes* perk me up is some stretching exercises. I've learned a few yoga poses and some pilates exercises. Yoga especially seems to give me a boost when I didn't think I had an ounce of energy left. But often I just flat out have to sleep. At work I was bad - I would go into the ladies room and sit in the stall and allow myself to nod off. not very sanitary but had I done so in my office I'd have gotten fired. :P
What risks do you fear with Plaquenil. Of all the disease-modifying drugs available for us, it is has the least risk. It has been a godsend for me. But everyone is different and not everyone can take it. I've been on it for.. uh.. I think 5 years (I've lost track) and really some days I can almost forget I'm sick. compared to where I was 5 years ago... it's hard to fathom just how bad it was then. Sometimes I get grumbly because I get tired or I have a headache or my knee aches. Then I think back to the days prior to being treated by a rheumatologist and realize what pure H*ll I was in then.
anyway - not trying to force Plaquenil on you but don't rule it out just yet. Also, there are alternatives to it that have lower risks as far as the vision problem. Chloroquin is one (I think, don't quote me on that.)
And one of the other disease-modifying drugs may be in order if you can't get the problems under control. If you're not seeing a rheumatologist but "just" an internist - I think you should look into finding a rheumy with experience in lupus treatment.
Are you in the US? If so, the LFA chapter nearest you can often provide a list of doctors in the area who treat lupus. They can't recommend one or the other (for legal reasons.) They can also refer you to support groups where you can compare notes with other patients and perhaps find a doctor that fits your needs and personality. Some doctors will have more traditional approaches like mine, others will be more open to "complementary" medicine if that is what you are looking for. My urologist does complementary medicine and I really appreciate her openness to treatments beyond the classic "ream it out and see if that fixes it" approach to the urinary tract of females! :)
blah blah babble babble. Can you tell I've had some caffeine today? :)
take care and good luck! kcat
JQ - 20 May 2005 16:53 GMT Hi KCat, I'm in Canada actually just waiting to see a good specialist. The reason I won't take Plaquenil right now is I want to have a baby soon and i understand it stays in your system for a few onths after stopping taking it and there's the possibility of it effecting the fetus and i can't take that risk. I have to research drugs more once I see the specialist. Thank you, Jacquie
KCat - 20 May 2005 17:35 GMT > Hi KCat, > I'm in Canada actually just waiting to see a good specialist. [quoted text clipped - 4 lines] > see the specialist. > Thank you, Jacquie ah.. okay. that's a very good reason for avoiding any of these meds if at all possible.
Yes, plaquenil stays in the system in very small amounts for some time after stopping the medication (up to 8 weeks is the number I was given.) For me, it's not enough to maintain relief from symptoms and 2 or 3 skipped doses results in joint pain and fever.
Nicole H - 20 May 2005 01:00 GMT You're sick because of the lupus. Don't worry about your white blood cell count. Lupus will make you sick, feel like crap, etc. It's not your WBC count that is making you ill. You need to educate yourself on the disease and how it works. Find a rheumatologist and start treatment. Was researching > into taking Plaquenil but there's too much risk. I would almost feel > like I was doing something wrong to try to weaken my immune system " There is very little risk of side effect when taking Plaquenil. It's one of the most mild drugs used for lupus. You are screwing up your immune system already by taking echinacea and whatever other immune boosters. The plaquenil helps to put your immune system back where it belongs. Think of it like a cast for a broken bone. You wouldn't allow the bone to stay broken, you'd seek help and get it treated.... the cast helps to keep the bone in place so it heals. There are studies showing that if you start Plaquenil early and continue it for many years, you can actually help to ward off more advance problems- cns involvement, lupus nephritis, etc. So instead of taking a mild drug that could potentially stave off these problems, you may end up on serious biologics or chemo meds to stop the damage. Lupus can affect every organ of your body and if affected, without treatment, most likely the patient dies. "How can you avoid getting sick if you can't take vitamins?" There once was a time where vitamins didn't exist. Eat a balanced, healthy diet and you'll get all the vitamins you need. There is nothing you can do to stop from "getting sick". It's part of having a chronic illness.
You obviously don't understand white blood cells much less lupus. Forget whatever you think you know and do some serious reading/studying so you can really understand what's going on.
> Oh my!!!!! Wow I'm clueless. I totally feel run down all the time. So > how do I boost my WBC? Should I worry about it? It's been low for years [quoted text clipped - 11 lines] > I'm so tired of catching everything!!! > Thanks, Jacquie JQ - 20 May 2005 14:37 GMT Hi - thank u, it's so complex. I've always been told because my WBC was low for years it's why I'm always getting sick and run down. Hard to break old habbits I guess, just goes against everything I've been told in the past. I've only recently been diagnosed in February so I do have a lot to learn. My doctor doesn't know much about Lupus at all!! I have seen a rheumatologist and he too knows little to none and hasn't been help at all!!!! He didn't even know anything about plaquenil and told me to research it myself and see him with my decision in 3 months! I'm waiting to hear back about a specialist appointment with a rheumatologist that specializes in Lupus, the best in Canada. Been too long with no answers or help. I'm sure he'll be able to help me out in understanding this better. It's hard to get a good doctor in Canada I found. I've seen countless doctors before someone would even listen and have me tested. Unfortunately not many people know anything about Lupus it seems however a lot of people seem to have the disease. I eat tonnes and a healthy diet so I don't know what else really I can do to stay healthy. I'm too tired to even exercise much anymore. Up til last summer I was running up to 80 miles a week and I miss it. I need help and advise to get back on track with my immune system so I can be healthy again. Thank u! Jacquie
Nicole H - 20 May 2005 20:38 GMT Unfortunately, your healthy days are gone. You will have to adapt your current life style when needed. All rheumatologists should know about lupus. That's their speciality. What an idiot dr. To tell a patient to research the drug and then let him know. Honestly, what if you research heroin and decide it'll help you... will he rx it then? I'd definitely run far away from that dr.
There are a few excellent lupus books. Go to www.lupus.org and look around... lots of great info and they have the books you need to read too.
Good luck. Continue eating healthy, exercising when you can and doing your best. Sometimes, there's nothing we can do but deal w/what this disease gives us.
> Hi - thank u, it's so complex. I've always been told because my WBC was > low for years it's why I'm always getting sick and run down. Hard to [quoted text clipped - 20 lines] > Thank u! > Jacquie blades - 20 May 2005 13:40 GMT Autoimmune diseases are often caused by an overly active immune system. You probably don't want your immune system strengthened.
> Hello all! I am wondering if anyone has advise on boosting ones immune > system if they have Lupus. I am always very very tired and am not [quoted text clipped - 8 lines] > Much appreciated!!! > Jacquie Candi Bowen - 23 May 2005 21:45 GMT Here are some do's & don'ts - good luck!
Candi
Recommended in the treatment of SLE & other autoimmune inflammatory diseases
Supplements
Calcium - 1,500 - 3,000 mg Magnesium - 750 mg
L-Cysteine & L-Methionine - 500 - 1,000 mg Important for white blood cell activity & protection. Do not take with milk. Take with 50mg B6 & 100 mg C.
Proteolytic enzymes - Powerful anti-inflammatory.
N-Acetylglucosamine (N-A-G) - May prevent lupus.
Vitamin C - 3,000 - 8,000 mg daily to normalize immune function.
Zinc to normalize immune function.
Glucosamine sulfate.
Herbs
Pau d'arco - Used for autoimmune disorders, cancer, leukemia, liver & endocrine problems.
Echinacea - Used for rheumatic, antibiotic, immune system stimulant, restores inflamed connected tissue.
Garlic - Blood cleanser, anti-inflammatory.
Borage - An anti-inflammatory used for pleurisy & peritonitis.
Coltsfoot - An anti-inflammatory for the respiratory tract - coughs, hoarseness, bronchitis, asthma, pleurisy, helps spasms.
Ginseng - For feverish & inflammatory illnesses. Some sources say not to use with lupus; use with caution.
Feverfew - An aspirin sub, relaxes blood vessels & reduces inflammation.
Goldenseal - Good for mouth & nose ulcers.
Evening Primrose Oil - Fatty acids; used for arthritis, inflammation, MS, hyperactivity, schizophrenia & alcoholism.
Yucca - Anti-inflammatory.
Milk thistle - Cleanses the liver.
Omega 3 Fatty Acids - Well documented anti-inflammatory.
Foods to consume
Canola or olive oil or grapeseed oil Sardines Asparagus, eggs, garlic & onion for sulfur which aids in rebuilding connective tissue. Brown rice Fish Leafy Vegetables Nonacidic fruit Oatmeal, whole grains Fresh pineapple (Contains bromelain, an enzyme which reduces inflammation.)
Foods to Avoid
Nightshade plants contain Solanine, which contributes to inflammation in autoimmune diseases.
Potato Tobacco Tomato Eggplant Red & green peppers
Hydrazines - Mushrooms
Legumes contain L-canavine which increases inflammation in autoimmune diseases. (Alfalfa sprouts have the highest concentration.) Peas Beans Lentils Peanuts Carob Soybean
Avoid red meat, caffeine, citrus, paprika, salt & sugar.
Get your iron naturally, not from a supplement.
Do not take birth control pills.
Chemicals known to cause lupus flares
Aromatic Amines - Hair color - paraphenylenediamine
Tartrazines - Food dye FD&C Yellow #5
Eosin - In lipstick
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>Hello all! I am wondering if anyone has advise on boosting ones immune >system if they have Lupus. I am always very very tired and am not [quoted text clipped - 8 lines] >Much appreciated!!! >Jacquie Nicole H - 28 May 2005 05:34 GMT echinacea is NEVER recommended in the treatment of SLE as is anything that stimulates the immune system. Personally, I would ignore this list... there are several things that just don't make sense
> Here are some do's & don'ts - good luck! > [quoted text clipped - 116 lines] > >Much appreciated!!! > >Jacquie Shelagh - 29 May 2005 00:14 GMT I second that motion Nicole! Ignore this 'supplement' list without seeking medical advice first!! hugs, Shelagh "Nicole H" wrote in message
> echinacea is NEVER recommended in the treatment of SLE as is anything that > stimulates the immune system. [quoted text clipped - 6 lines] > diseases >> Supplements V - 25 May 2005 14:41 GMT > Hello all! I am wondering if anyone has advise on boosting ones immune > system if they have Lupus. I am always very very tired and am not [quoted text clipped - 8 lines] > Much appreciated!!! > Jacquie You do not want to do that! It makes your immune system nutty and then symptoms get worse. See a specialist in herbal remedies who is qualified and knows about autoimmune disorders. Talk to rheummy... V
herbwormwood - 29 May 2005 10:39 GMT > Hello all! I am wondering if anyone has advise on boosting ones immune > system if they have Lupus. I am always very very tired and am not [quoted text clipped - 8 lines] > Much appreciated!!! > Jacquie The others have told you not to boost your immune system. They are right. If you have lupus your immune system is confused and attacking you. However it sounds like you are "run down" too. If you have lupus you need to rest as much as you can, maybe more than you think you need. You also need to exercise as much as you are comfortably able, not overdoing it but perhaps a short walk every day in fresh air or some swimming, but don't overdo it. This is to keep your joints in shape and your heart. Take advice from your doctor if you have never exercised before. Also cut out smoking if you smoke. Avoid alcohol to excess as it puts a strain on your system. Avoid caffiene as paradoxically it can cause tiredness. Avoid refined sugar, this can lead to tiredness too due to blood sugar drops. Eat healthy, lots of fresh fruit and veg and fresh pure fruit juice every day. Avoid fast food. If you do this you shouldn't need supplements or vitamin pills. Antibiotics don't work on viruses and can cause complications so only take them if your doctor says you need them for a bacterial infection.He should check you out fully before prescribing one to make sure you do have a bacterial infection. Make your doctor do blood tests at least every 6 months to check for lupus activity.
JQ - 29 May 2005 16:43 GMT Thanku, so much I didn't know. I went and picked up taht book everyone recommended and I heard so much about. The Lupus Book, 2005 edition. So much great info! So much more to learn. If only more people understood about the disease. It's so difficult when no one understands how exhausting every day life is and how I can only do so much each day. Thank u! Jacquie
Beverley - 29 May 2005 17:30 GMT Jacquie,
Here's a link to a story that sums up the way most of us feel.
http://www.butyoudontlooksick.com/spoons.htm
I love it. Some days you just run out of spoons. Learning to manage the spoons you have is so important. Bev
> Thanku, so much I didn't know. I went and picked up taht book everyone > recommended and I heard so much about. The Lupus Book, 2005 edition. So [quoted text clipped - 4 lines] > Thank u! > Jacquie JQ - 29 May 2005 20:54 GMT Bev, that is an excellent way to describe it. Perfect Spoon theory! That is a great way to help others understand. Hopefully my friends and family will soon understand too. Thank u, I hope everyone reads that! Jacquie
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