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Hi all ..
I'm not from Texas but rather Canada ..
I've spent the last few days .. reading the many posts here .. thanks for taking the time to post. It does help to have others around that relate to the health challenges ..
I'm a 36 year old male that is married :) .. with 3 great sons !!
I've not yet been told I have lupus .. but I've had 9 of the 12 or so normal health problems that are common among those with lupus .. :)
The last two and a half months have been nothing but a growth experience. I believe I could write a poorly written book already about the health care system in Canada.
Unlike many of the people that have posted here .. I have physical proof in the form of CT's and xrays .. that say somthing is seriously wrong .. so don't believe for a moment that if only the pain you have could been seen on film . you would get better help!
In the past few weeks I've been told I had a heart attack .. and throat and lung cancer which are advancing .. quickly !
But the problem with the picture is I have never smoked and the blood work for cancer keeps coming back negitive ..
Week after week the doctors order more blood work and CT scans and they see things getting worse ... but no help !
Two weeks ago my right side of the face went to sleep for a few hours .. and when it improved the doc said I lost some muscle control under my right eye ..
The doc also was kind enough to say .. if it gets worse come back to ER !! .. thanks pal :)
Then he mentioned .. oh by the way .. we noticed some imflammation in two places on your spine .. we thought it had already reached your brain .. but the good news it hasn't yet ..
I believe I'm in the middle of a serious flare up ... as you all call them.
I can't even get an appointment with a rheume ..
And all the other doctors .. including a heart lung surgeon among the group .. come up with more questions then answers ..
I finnally did the research on my physical condition myself and told them I have ... Chronic diffuse interstitial lung disease .. with an added bonus of fibromyalgia that shows up only when the weather gets humid.
One specialist agreed that everything points this direction and asked that I get an appointment through my family doctor to see a rheume ..
It feels like lupus is killing my heart and lungs .. the pain is very sharp at times and I'm very tired .. :)
My hands are very sore today .. as a new weather system is rolling in this afternoon ..
Chat later :)
06-03-2005, 01:08 PM
Look up words like: vitamin B-17, nitriloside, Laetrile, cancer in a search engine.
Currently looking for good equivalent for lupus. What I've found so far is to avoid dairy, canola, and soybean oils, red meat, chicken, pork, tomatoes, eggplant, tobacco (not ingesting it may be ok).
Good things may be black cherries, greens, hot peppers, sesame, flaxseed and olive oils, mushrooms.
There's much more I'm sure, but if you're interested I'm sure you'll do some research on it.
For those that don't know of search engines, try; www.google.com or www.yahoo.com enter a word in the search box and enter.
I've changed my diet .. about 8 weeks ago .. and started tons of herbs and vitamins .. all the ones mentioned plus several more. :)
I have a sister with MS and like I said... I have most of the common health problems related to those with lupus.
The the health issues occured over 15 years and none were ever treated as they all simply went away .. or I've lived with them and the pain the last 2 decades ..
I will say that diet does help .. and several herbs I found help a ton .. I believe I'd be died already without them.
One of the health problems I have .. I'm told only 1 out of 300 million people will get .. so the docs treat me with kid gloves ..
I'm feelin abit better .. after a long afternoon rest .. :)
The clouds have rolled in and the rain will start soon .. I'm lucky .. as I live in a area of the country where humidity is rare .. I have gone years without the fibromyaglia issues .. a huge blessing ..
Lupus is an illness of the immune system, the immune system is overactive. Vitamin c and lots of vitamins help to stimulate it. Do you really want it to be more active?
We are advised not to have too much vitamin C, or foods that stimulate the immune system.
A healthy diet is more important. Reduce fats, eat regularly. Balanced diet of protein, fish, meat, milk, cheese, eggs, vegetables and fruit.
I don't know all the answers I am a retired nurse but a Lupus sufferer and I think its more important to just eat healthily.
06-08-2005, 07:03 AM
This is a post script to what Val said. Please be very careful about the vitamins and herbs that you are taking with Lupus. If you notice, one of the most frequently prescribed medications for lupus patients are Immunosuppressent drugs (in other words, drugs that suppress the immune system). For this reason, our doctors tell us to avoid many vitamins and herbs because they do, indeed, stimulate the immune system which can cause serious complications with our disease. Further, many of them can be contraindicated with you prescription medications which could cause serious complications.
Talk to your doctor about the vitamins and herbs that you are taking and do not take anything without your doctor's approval!
Please Be Careful
I was infact on a special herbal program the past few weeks and I would say that it did make matters worse because it did strengthen my body ammune system.
I've stopped the program and a number of the more serious health issues .. have calmed down for now.
I did get to see a rhume .. but the meeting was brief .. he saw the high RH factor and laughed and sent me packing .. a number of nurses and such have told me though that they too had problems with this doctor's care and sought second opinions and got treatment as required for lupus.
I also got a internist .. reviewing my large medical file and he believes that lupus is the 3rd possiblity .. for now cancer is still #1 and #2 and has ordered more cancer tests .. such as a bone marrow biopsy later this week.
Soon I hope to get some treatment for this disorder .. several in my immediate family have autoammune disorders and I was told the other day that a childrens hospital is interested in testing our whole family because of the nature of the health issues related to lupus that many of us are having ...
Thanks again for the herbal advise ..
06-23-2005, 06:39 AM
You are welcome :lol:
Keep us advised as to how you are doing and your diagnositc process. Remember, we are here for you!!
Peace and Blessings
06-23-2005, 08:32 AM
Lupus is an illness of the immune system, the immune system is overactive.
-That's what we're told by the pharmaceutical industry which has been known to be wrong about things over and over. Trust this statement if you want to; I don't.
I think its more important to just eat healthily.
-Definetly! Through my personal research on the topic, most of it leads me to believe particular foods are causing "flares", and suppressing healing. Doesn't the immune system also attack things we're allergic to, and thus our allergic reaction?
A lot of things we're told are good for us are simply advertising and not the public service announcements we think they are. Examples would be GE's mammogram machine, dairy (the food group chart we know from school was sponserd by the dairy association), canola (rapeseed) oil, Campbell's (lower quality standards than Alpo dog food) soup, and soy.
About the time I started getting symptoms, I'd started eating fried soybeans. I started eating more salads with soybean oil based dressings (now they're all canola :roll: ). I noticed bad stomache aches from eating at chinese restaurants occasionally, as well as eating salads. I thought I was allergic to onions, and couldn't handle many vegetables. I proved both to be wrong after years of paranoia. Recently I was deep frying in soybean oil and getting stomache aches which I thought were completely random by that time.
Lately I've switched to using olive oil. I have to make my own salad dressing with it, but it's well worth it for flavour alone! It actually appears that the olive oil makes me less dependant on antacids and seems to be curing "what is called" acid reflux disease which I don't believe is a "disease" at all. My joint/ tendon pain seems to be lessening as well.
Soy is one of the most genetically modifed foods in the world if not the most. It's not natural to everyone's diet like dairy isn't natural to asians of which I've read that ~99% are lactose intolerant. Preliminary releases of gmo foods caused at the very least people to be rushed to emergency rooms for allergic reactions causing the move to label gmo'd foods as such.
I believe that soy may be the cause of my symptoms based on observations I've made in my diet and my ups and downs. Many people may have thier own food or foods in which they should avoid since so many websites indicate varying food related causes. Incidently some of the vitamins/ and nutrients I used to take were derived from soy. Soy used to be in many many things. Now we see canola taking it's place. If anything, canola is worse.
I'd urge people to research this stuff, as the cure for at least some of us may be found in diet. Be careful about what they say is "good for us". Look into canola and why they'd spend billions to make us "think" it's healthy!
06-28-2005, 06:34 AM
Good Morning Everyone!
There are those who believe that soy is more harmful than beneficial. There have been some epidemiological, clinical and laboratory studies done which have linked soy to malnutrition, digestive distress, thyroid dysfunction, cognitive decline, reproductive disorders, cognitive, immune system breakdown, and even heart disease and cancer. Scientists have said that the isoflavones in soy products have been found to depress thyroid function and cause goiters in otherwise healthy children and adults.
Dr. Mercola states:
"The two worst product categories are soy protein products and soy oil. Unlike in Asia where people eat small amounts of whole soybean products, western food processors separate the soybean into two golden commodities--protein and oil. There's nothing safe or natural about this. Today's high-tech processing methods not only fail to remove the antinutrients and toxins that are naturally present in soybeans but leave toxic and carcinogenic residues created by the high temperatures, high pressure, alkali and acid baths and petroleum solvents.
The worst of today's soy protein products are soy protein isolate, soy protein concentrate, texturized vegetable protein and hydrolyzed vegetable protein. We find these ingredients in everything from shake powders, energy bars and veggie burgers to canned tuna. The worst soy oil products are margarines and shortenings made from partially hydrogenated soybean oil containing dangerous trans fatty acids. Most of the liquid vegetable oils sold in supermarkets also come from the soybean. To make these bland enough for public acceptance, the oils are subjected to heavy refining, deodorizing and light hydrogenation."
Most doctors who talk to us Lupies about our diets will generally tell us to AVOID soy products. Also, we are told to avoid legumes (the pod with peas or beans) the most common being "string beans", alfalfa sprouts, red meats, etc. etc.! I still firmly believe in buying whole foods and preparing them carefully. Dr. Mercola agrees by saying, "The best--and maybe the only--way to completely avoid soy in the food supply is to buy whole foods and prepare them ourselves."
As always, I say research..learn about the product. Read what the supporters and the rebuttals have to say and don't forget to read any research or tests that have been done. After doing that, you will be able to make an informed decision that is right for you!!
As a Lupus patient, we must do all that we can to keep ourselves informed! It is our greatest defense!!
Peace and Blessings
06-29-2005, 05:43 AM
Since it was mentioned, I've heard that a main cause of thyroid problems is fluoride. Fluoride is a toxic waste, and many believe it doesn't help our teeth at all with convincing claims. I don't believe Pur and Britta filters filter out fluoride. Research ;)
07-02-2005, 01:11 PM
:( holey cripes. I practically survive on soy. Tofu, edamame, miso (not too often - too much salt!), "soy-sage" when I need a meat "fix", and soy gardens marjarine. :!:
I should stop that? :?: :?:
And, you mention soy in other products, like makeups, etc. If it doens't lead to contact dermatitis, is it still a problem?
How does one get tested for food allergies? :?:
07-04-2005, 02:41 PM
The simplest, least expensive form of testing for food allergies is with an elimination diet. These diets vary from one health center to another. Generally, however, you begin with a three to seven day water fast. No food, just all the water you want for the specified length of time. This is the most effective, since you are allowing your body to get rid of all the possible food allergens you may have. It is not easy to do for most people and is virtually impossible for individuals who can not go for extended periods of time without replacing rapidly depleted blood sugars. But, here is some information on how you can do the "elimination diet test"
Some of the foods most commonly causing sensitivity are wheat, corn, yeast, milk, eggs, fish, shellfish, citrus fruits, chocolate, tomatoes, strawberries, sugar, food additives and nuts. Fish, however, almost always cause an immediate reaction so that anyone sensitive to fish generally knows it without having to test for it. For that reason we frequently use a strict fish and vegetable diet for one week prior to testing for allergic foods. We recommend deep, cold-water, ocean fish only and we limit the vegetables to the non-starchy ones. No tobacco, in any form, no alcohol, and no social drugs are allowed for the duration of the tests. If there are over-the-counter or prescriptive medications which you use on a regular basis and which you can safely not use for the time frame of these tests, it would be best to avoid those as well.
It is not necessary to eat fish at every meal nor even every day. The fish is included for those who require variety and feel it is essential that they have meat protein. Including other food items or drinks during this week greatly reduces the effectiveness of the testing. Aside from freshly made vegetable juice, the only liquid you should use is pure (no chlorine or fluorine added) water. It can be room temperature, warm or hot. Ginger tea (made with peeled fresh ginger) is acceptable for those who tolerate it well.
During this week of water fasting or restricted diet you need to check your pulse daily before getting out of bed in the morning. Keep a record of these numbers in the chart provided at the end. After the specified time for your fast, you will introduce one food each day into your diet. You should choose a starchy food such as rice first. Before eating it, be aware of your feelings. Do you really want it? Does it look good? Does it smell good? Taste it. Does it taste good? Check and record your pulse. If it is more than 10 to 12 points higher than your average, first morning pulse, you may be sensitive to this food. Observe how you feel physically, emotionally and mentally. If you notice any symptoms other than feeling great, thinking clearly and being emotionally stable, that food may be an allergen for you. If your pulse is more than 10 points higher than normal and if you notice symptoms, do not eat any more of that food. Continue with your cleansing diet until all symptoms are gone and your pulse returns to its usual rate.
If, after tasting the food, your pulse is about the same as your first morning pulse and you did not notice any unusual symptoms, eat as much of a normal helping of that food as you want. Wait thirty minutes and record your pulse again. Also record your pulse at 60 and at 90 minutes after eating. Eat another helping of the same food at lunch with the pulse being taken and recorded as above. Do the same with dinner. Record your pulse first thing the next day. As long as your pulse stays relatively close to your average and you notice no unusual symptoms, introduce another new food the second day and each day thereafter following the same procedure of being aware and recording pulses.
Sometimes, a food to which you are sensitive will not cause symptoms or pulse changes for 2 or 3 days after eating it. If this occurs, you may have to backtrack to isolate which food actually caused the problem. This is time consuming but quite effective. Eliminate the food you added most recently. Continue using the other foods you added. Wait several days then eliminate the next most recently added food. Wait several days. Continue until you find the offending food. With consistency and perseverance, after several weeks, you should have an acceptable group of symptom-free foods for a healthy, satisfying diet.
It takes three weeks for inflammation to be reduced and about six months for antibodies to allergic foods to be broken down and eliminated. During that time you can feel worse before you get better (Herzheimer Effect). If you are still having problems after one to three months, other possibilities should be explored.
I hope that this has been helpful to you!!
Best Of Luck
07-05-2005, 06:15 AM
Thanks, Saysusie....I'm not sure I can tolerate an extended water fast, but will talk to my doc about testing via elimination diet or other means. Sadly (but in a way, it isn't a surprise) many items on the "common" list are regular parts of my diet.
And if I'm allergic to chocolate? Well, I'm just going to have to make a decision. (I'll probably decide to keep eating it!) 8)