***Also see the post on So You Have Lupus What Do You Do Next?***
http://lupushopehealingplan.blogspot.com/2009/10/so-you-have-lupus-what-do-you-do-next.html
Basic Diet and Lifestyle Recommendations by Toni Kaste
Nutrition Simplified- "Eat Food, not too much, mostly plants" – Michael Pollan
Eat real, whole foods, that is! – Toni’s interpretation (I believe Michael Pollan agrees!)
1)Keep a food/symptom diary. This will show if you have a repeated reaction to a food that you need to avoid to feel better.
2)Also create a health "binder" the three hole type that you can put all your pertinent health information : copies of your blood tests, questions and research articles for your doctor/s, supplements, medications you are taking, allergy testing, etc
3) If you have an Autoimmune Disease (Lupus, Multiple Sclerosis, Diabetes etc) or other chronic on-going disease, get tested for Celiac disease, do this BEFORE you go gluten free if you can. The test will not be accurate unlesss you are presently eating gluten. (often Lupus and other autoimmune diseases and Celiac go hand in hand, check the internet for articles. Celiac Disease can cause leaky gut and that ruins the health of your intestines. Remember 75-80% of your immune system is in your gut. Make sure you heal the damage!
http://www.northtexasgig.com/relateddisorders.htm
4) Visit your practitioner/physician at least once a year, more often if you have a chronic disease. Know your numbers, blood pressure, weight, cholesterol, fasting sugar level, CRP etc. Evaluate each year’s blood work with your practitioner to see if any trends are happening to cause disease or blood levels are correcting themselves for health. Get a complete blood test from your health practitioner and also test if you are deficient in Vitamin D, Magnesium, Calcium, B12 and all the rest of the micronutrient testing.
http://www.spectracell.com/micronutrient-testing-comprehensive-nutritional-panel/
Test for deficiency in stomach acid. Check mercury levels,(and other heavy metals tests too),hormone levels, and thyroid function, adrenal function, parasites, candida, viruses in the blood, check CRP and homocysteine levels. Check for osteoporosis, bone density. Try a Metametrix Cardio ION blood test http://www.metametrix.com/test-menu/profiles/integrated-profiles/cardio-ion
if you can afford it. This test includes many of the above tests in one all inclusive test. When you know what your body is lacking correct it with the proper foods/supplements. Most common deficiencies.
http://1stholistic.com/nutrition/hol_nutr-def-symptoms.htm
Supplement information
The Natural Pharmacy by Health Notes
5)Test for environmental and food allergies(with nutritional kinesiology/muscle testing or IgG or IgE blood testing or ALCAT tests) Food and environmental allergies and autoimmune diseases go hand in hand too again check the internet- look up "leaky gut" too. http://www.youtube.com/watch?v=sFH1tX-a6jI
Or try an elimination diet Dr. Cranton has a GREAT one! As you heal your intestines you may be able to tolerate foods you were previously sensitive to.
http://www.drcranton.com/elimination_diet.htm
In my experience, and my doctors’ experience as well as many doctors that have written articles and books on the subject…. many times people affected by autoimmune disease/chronic disease have intolerances/allergies to gluten, dairy and eggs. (many other foods as well)
To read more on this subject see Books to Read on Healing on page 6.
http://lupushopehealingplan.blogspot.com/2009/10/books-to-read-on-healing_30.html
6)Avoid all foods you test allergic/intolerant to.
If you need to avoid dairy, make sure you add in calcium rich non-dairy foods.
http://www.healthdiaries.com/eatthis/15-non-dairy-foods-high-in-calcium.html
If you tolerate or choose to eat dairy foods or eggs make sure they’re organic, the toxins get concentrated in these foods.
Dairy and Health Issues (also read The China Study by T. Colin Campbell PhD)
http://www.nutritionmd.org/nutrition_tips/nutrition_tips_understand_foods/dairy.html
7)Detox your body(safely) don't try anything too wacky... I like eating tons of organic veggies and fruits and making fruit or veggie juices(always fresh fruit or veggies) or smoothies (with fresh or frozen fruits/veggies). Drink 8, 8 ounce glasses of purified water, alkalinized water, structured water (do your research to find which water is best in your eyes and what you can afford.)
http://www.danielvitalis.com/raw-water/
Research enemas/colonics. Sweat with a sauna (far infrared is the best) and sweat with exercise too. Sweat removes toxins.
8)Flood your body with nutrients, eat super healthy foods, seasonal foods, raw food diets, macrobiotic diets, complex carbs have a slower glycemic release and let energy last longer, drink fresh homemade juices, green smoothies, certified organic food, 5-9 servings of vegetables and low glycemic fruits, lots less salt(if you overdo) use sea salt and sea weeds, not table salt, if not eating iodized salt make sure you eat sea veggies for iodine, important for thyroid health, no lunch meats (if use at all use low sodium, uncured, nitrite, nitrate free meats) NEVER eat processed foods, don't drink alcohol, don't smoke or use tobacco, no recreational drugs, have lots of Omega 3's, EPA and DHA, no soda, avoid too much caffeine/coffee, drink herbal teas, no trans fats, no artificial sweeteners, less real sugar or no real sugar. Sweeten foods with fruit, dried fruit, dates, xylitol, lakanto, lacuma, honey, maple syrup ( though the less sugar, even natural fructose, the better) Less meat or no meat for a time, if you choose to eat meat use it as a condiment, make sure the meat is organic, grass fed, range free and humanely treated and slaughtered. Make foods at home and eat out infrequently, unless you have a trusted healthy and organic restaurant. Eat breakfast or have a breakfast green smoothie. Search for raw foods smoothie/ juice recipes on the internet or at your local library. You want mostly veggies in your smoothie. Use healthy cold pressed oils.
http://www.whfoods.com/genpage.php?tname=foodtip&dbid=202
Chew each mouthful of food many times to aid in digestion 25-100x!, swirl juices smoothies in your mouth to be sure they are mixed with saliva before swallowing. Try to eat in a peaceful environment. Eat last meal/snack 3-4 hours before bed.
9)Exercise at least 30 minutes, 3-5 times a week. Try life exercises, go get the mail, do gardening or yard work, clean your house, walk your kids to school, park further out from the grocery store, walk walk walk anywhere you can. Stretch! Yoga Or Tai Chi or Pilates. What did you enjoy as a child? Dance classes, basketball, softball, dodgeball, rollerskating, iceskating, incorporate the things you loved as a child back into your life now! Try rebounding(mini trampoline)great for your immune system and cell health! Exercise also helps move your lymph gland fluids!
Do weight bearing/ weight training exercises for bone and muscle strength.
10) Sleep peacefully for the amount of hours required by your body to feel refreshed. Your liver detoxes best at night on an empty stomach. Cells replenish themselves while you sleep.
http://serendip.brynmawr.edu/exchange/node/2078 How sleep heals
http://articles.mercola.com/sites/articles/archive/2010/10/02/secrets-to-a-good-night-sleep.aspx Ways to get a good night’s sleep
11)Rest when you need to, say "no" if you are too tired or overbooked or stressed out!
12)Stress less... try not to sweat the small stuff, practice breathing exercises, many CD's are available at your local library, Andrew Weil has some excellent CD's on breathing/relaxation visualization and healing. http://www.amazon.com/Breathing-Master-Key-Self-Healing/dp/156455726X
http://www.drweilproducts.com/drw/ecs/books_cds_dvds/index.html
Watch comedies, read joke books LAUGH!!!
13) Feng Shui-or lessen the clutter, clean your environment. Try to do a little at a time or at least clean your bedroom and that can be your retreat...
14)Do macrobiotic "body scrubbing" (see the internet for articles) You skin is your largest detox organ, doing this helps to detox your body.
http://www.whollymacrobiotics.com/fine-art-of-body-scrubbing.html
15) Try additional alternative therapies such as reflexology, reiki, massage, NAET, acupuncture, Active Release Therapy, Cranio-Sacral Therapy, Chiropractic, a therapist to heal old childhood hurts. Try “grounding” read the book Earthing by Clint Ober.
16)See a holistic dentist, get your mercury amalgams taken out if you feel that it's necessary.
17) Detox your house and your work space and your world as much as possible. What is in your soap,shampoo, your deodorant, your toothpaste, your make up, your shaving cream, etc.? Your skin absorbs everything into your body. Try to get a shower water filter, or a whole house water filter (chlorine is a nasty chemical). Don't use bleach in your laundry, get a environmentally safe laundry soap, dishwasher soap. Don't use aluminum pans/foil(at least don't let the aluminum foil touch your food, use less canned products many are coated inside with harmful chemicals, don't use teflon pans, don't wear cheap jewelry many have lead in them and other harmful chemicals, don't wear nail polish. Home carpets/rugs and paints have many nasty chemicals in them try to find environmentally safe home decor items. Use wood, stone metal rather than plastic etc. Avoid phlalates in many toiletry items (soaps, shampoos, perfume, etc.)Get an air purifier and use it or open the windows wide and air out your house periodically EVEN in the winter. Keep house plants in your major living areas, living room kitchen and bedroom they naturally filter the air. Use natural home cleaners such as vinegar and baking soda. Read the labels, look up chemicals on the internet. Some are very scary! Wear organic cotton clothing, or look for bamboo fabrics. Use glass to store foods instead of plastic. NEVER heat food in plastic in the microwave, better yet don't use a microwave oven at all. Be careful of plastic water bottles left in the car on a hot day, plastics leach chemicals into food and water when heated. If you use prescription drugs be aware that they strip away nutrients from the body, take necessary supplements as needed. http://www.naturalnews.com/DrugWatch_Home.html
Research and read labels of over-the-counter medications and use sparingly or not at all. Even “safe” aspirin and ibuprofen have serious side effects.
Creating a Green Home and Workplace http://www.ecoellies.com/pages/Guide-To-Creating-A-Toxic%252dFree-Home.html
18) Find your passion in life and if possible make it your occupation. Also heal relationships with significant other, parents, siblings and friends. Forgive!
Create balance in your life between work and play, and spouse and children, and spending and saving (finances). Simplify your life.
http://zenhabits.net/simple-living-manifesto-72-ideas-to-simplify-your-life/
19) Find yourself a doctor or doctors that you can trust and believe in (the hardest and most important item)
I have found that Alternative Doctors, Integrative Medicine Doctors, Holistic Doctors, Holistic MD's, Chinese Traditional Medicine Doctors, Naturopaths, Chiropractors, and Functional Medicine Doctors, are going to use less or no medications and believe more that your diet matters immensely and also help you find out if you have any food or environmental allergies/intolerances. Remember the doctor works for you, you pay the doctor the big bucks and they should earn their keep. If the doctor makes you do things that are uncomfortable for you, or their protocol just doesn’t sit right with you, find a new doctor, there are millions out there, ask friends for recommendations (make sure you get these!) or read books/ articles or go to seminars/talks that the doctor gives (not all doctors do this but it makes it so easy to see if their beliefs mesh with yours...)
.***Always ask questions and keep reading and learning about your disease. Doctors don't know everything and there is so much information to learn. You may stumble on something that can help you and you can bring it to your doctor's attention. Good Luck!
Links to my Blogs
http://www.lupushope.blogspot.com/ Nutrition based and Holistic Lupus Healing Blog (other diseases are covered as well)
http://www.lupushopehealingplan.blogspot.com/ My Lupus Healing Plan
http://www.lupushopecookbook.blogspot.com/ Super Healing and Healthy Recipes Gluten Free, Dairy Free and Egg Free - Raw Foods and Macrobiotics
http://www.myfamilysfavoritegfcfrecipes.blogspot.com/ Gluten Free, Casein/Dairy Free, Mostly Egg Free recipes for when a craving strikes
Books to Read on Healing
You can request many of these books through your local library. Ask the librarian for the book/s you are interested in and if they don't have the book, many times they can do an interlibrary loan (get it from another library).
"The Lupus Recovery Diet" by Jill Harrington (title says it all)
"Pain Free in 6 weeks" by Sherry RogersMD (total toxic load on the body, ways to heal, holistic)
"The Gluten Connection" by Shari Leiberman (diseases that can be exacerbated by gluten)
"Gluten Toxicity..." by Shelly L. Stuart, R.N., B.Sc.N.
"Living on Live Food" by Alissa Cohen (A raw food diet, tons of recipes and testimonies)
"The Great Life Diet" by Denny Waxman (A macrobiotic diet)
" The MS Recovery Diet" by Anne Sawyer (healing MS through diet)
"Living Well with Autoimmune Disease..." Mary J. Shomon (holistic)
"The Ageless Woman" by Serafina Corsello, MD (MD+alternative/holistic)
"Dr. Mercola's Total Health Program" by Dr Joseph Mercola (diet for your specific body type)
"Arthritis..." 2nd Edition by Ellen Kamhi PhD RN HNC and Eugene Zampieron ND MH(AHG)(Holistic and Alternative by the "Natural Nurse" and a Naturopathic Doctor)
"An Alternative Approach to Allergies" by Theron Randolph MD and Ralph W. Moss PhD
"Celiac Disease a Hidden Epidemic" Peter H.R. Green MD and Rory Jones
"Food That Helps Win the Battle Against Fibromyalgia" by Deirdre Rawlings N.D., Ph.D.
"Breakthrough, Eight Steps to Wellness.." by Suzanne Somers(interviews cutting edge doctors)
"The UltraMind Solution.." by Mark Hyman MD(healing your broken brain, through healing your body first)
" The Cure Heal Your Body, Save Your Life.." by Dr. Timothy Brantley
"52 Ways to a Healthy You" by Laura Lewis
"The Women's Guide to Thyroid Health" by Kathryn R. Simpson, MS (Holistic, root cures, thyroid disease)
"Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal" by Datis Kharrazian, DHSc, DC, MS
"The Optimum Nutrition Bible" by Patrick Holford
Dr. Andrew Weil's Guide to Optimum Health" CD Set
"Health Wars" by Philip Day
"Cereal Killers..." by Dr. Ron Hoggan and Scott Adams (celiac disease treatments and other diseases that can affect a celiac patient- outrageous book!)
"The Sinatra Solution" by Stephen T. Sinatra MD (reversing heart disease with diet and holistic medicine)
"Is Your Cardiologist Killing You" by Sherry Rogers MD (research into the protocols tat cardiologists employ and why holistic approaches are safer and work better)
"Your Child Doesn't Have to Die" by Leanne Sorteberg (Holistic medicine and nutrition healed her child's cancer)
"The Detox Strategy" by Brenda Watson CNC with Leonard Smith MD
" ChefMD's Big Book of Culinary Medicine..." by John LaPuma MD (healthy cooking and halting disease with foods)
To Learn About Supplements
The Natural Pharmacy by Health Notes
A link to my recommended raw food "un-cookbooks" (you know what I mean! Raw Food!)
http://lupushopecookbook.blogspot.com/2009/08/great-raw-food-books.html
A link to some of my favorite Vegan and Macrobiotic Cookbooks
http://lupushope.blogspot.com/2010/05/some-favorites-vegan-and-macrobiotic.html
Monday, June 13, 2011
Friday, October 30, 2009
My Lupus Diagnosis Story
You may skip this post and the next one and go right to the third post which is entitled "So you Have Lupus...What's Next?" I just wanted you to see the extent of my Lupus symptoms and how I was diagnosed.
http://lupushopehealingplan.blogspot.com/2009/10/so-you-have-lupus-what-do-you-do-next.html
Here is the story of how I was diagnosed with Lupus...
A little before hand...I had an unexplained "grand mal" seizure about 7 years ago(never knew at the time that seizures are a symptom of Celiac Disease APS and Lupus)
Then about 3 years ago had issues with a mass in my breast and cervical pre cancer cells from HPV, not really related but still a sign I needed to take care of myself better.
Also when I lived in Texas for a couple of years
I was having blurred vision, numbness and tingling, panic attacks, dizziness to the point that I could not move ,severe migraines, and more. I was tested then for MS but did not have it. They never even thought to test for Lupus or for Celiac Disease, which I know could have been a definite diagnosis back then.(Read Peter Green's book "Celiac Disease : A Hidden Epidemic" for symptoms of Celiac Disease)
OK now to the nitty gritty... I developed a round disc shaped sore on my nose that wouldn't heal. My doctor sent me to a dermatologist. She thought it was skin cancer and did 3 biopsies, but they all came back negative. She decided I had enough skin damage on my nose to try a drug fluorouracil (click link for drug info) http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605010.html that I was to put on my nose and it literally peeled the skin off my nose, it was disgusting!
Well nothing got better, so the dermatologist sent me to a dermatologist specialist. He looked at the sore and my biopsies and was totally confused. He decided to cut the entire sore off my nose(I still have the scar) and send it to a special lab(the biopsy labs kept saying there was no cancer just inflammation.)
He got the results back and said the lab thought the sore on my nose was consistent with Discoid or Cutaneous Lupus. Went back to my primary care doctor and he sent me to a rheumatologist.
I talked to the rheumatologist and realized that many of my aches and pains were not normal aging as I had thought. They ran blood tests and urinalysis and confirmed that I had Lupus.
They said it looked mild and it may only be Cutaneous Lupus. I had an ANA of 1:80 not that high, and Antiphospholipid antibodies and DS DNA(Double Stranded DNA). Then the rheumy I had been seeing was out indefinitely, found out later he was ill. His partner took over my case. He said that I must take plaquenil and a baby aspirin each day. I researched this and found out the meds were very dangerous, I decided not to take the meds and research more.
Then the new doctor that was taking over the case said that I would need to go see him at another office that was an hour away. I decided not to continue with him and got the name of a new rheumy.
The new rheumy didn't work out , and then my neighbor gave me a recommendation of their rheumy that they liked ,so I went to see her. She is the same rheumy that I have today, she is a pretty good doctor, but has many flaws with her thinking. My highest ANA was 1:160 and I have DS DNA and Antiphosholipid antibodies, this rheumy believes from my blood work and my symptoms that I have full fledged Systemic Lupus . This rheumy offered me medications but said it was my choice whether I take them or not, and I have chosen not to. That is one thing that I appreciate about this rheumy is she gave me the choice and did not force me to take meds.(If you are presently on medications NEVER stop taking them without a physician's or medical professionals help and monitoring!!!)
The story continues when I met Dr. Gizoni (a nutritional kinesiologist) on one of my first posts on my original Lupus Hope blog http://www.lupushope.blogspot.com/. Once I met her I changed my diet and the rest is history I have felt so much better with this change in diet.
PS I told my present rheumy that I was going to change my diet and she said do what you want but it doesn't make a difference what you eat(mind you,she wrote 2 papers on Celiac Disease (problem with digesting gluten) and Lupus going together hand in hand!!!!)
http://lupushopehealingplan.blogspot.com/2009/10/so-you-have-lupus-what-do-you-do-next.html
Here is the story of how I was diagnosed with Lupus...
A little before hand...I had an unexplained "grand mal" seizure about 7 years ago(never knew at the time that seizures are a symptom of Celiac Disease APS and Lupus)
Then about 3 years ago had issues with a mass in my breast and cervical pre cancer cells from HPV, not really related but still a sign I needed to take care of myself better.
Also when I lived in Texas for a couple of years
I was having blurred vision, numbness and tingling, panic attacks, dizziness to the point that I could not move ,severe migraines, and more. I was tested then for MS but did not have it. They never even thought to test for Lupus or for Celiac Disease, which I know could have been a definite diagnosis back then.(Read Peter Green's book "Celiac Disease : A Hidden Epidemic" for symptoms of Celiac Disease)
OK now to the nitty gritty... I developed a round disc shaped sore on my nose that wouldn't heal. My doctor sent me to a dermatologist. She thought it was skin cancer and did 3 biopsies, but they all came back negative. She decided I had enough skin damage on my nose to try a drug fluorouracil (click link for drug info) http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605010.html that I was to put on my nose and it literally peeled the skin off my nose, it was disgusting!
Well nothing got better, so the dermatologist sent me to a dermatologist specialist. He looked at the sore and my biopsies and was totally confused. He decided to cut the entire sore off my nose(I still have the scar) and send it to a special lab(the biopsy labs kept saying there was no cancer just inflammation.)
He got the results back and said the lab thought the sore on my nose was consistent with Discoid or Cutaneous Lupus. Went back to my primary care doctor and he sent me to a rheumatologist.
I talked to the rheumatologist and realized that many of my aches and pains were not normal aging as I had thought. They ran blood tests and urinalysis and confirmed that I had Lupus.
They said it looked mild and it may only be Cutaneous Lupus. I had an ANA of 1:80 not that high, and Antiphospholipid antibodies and DS DNA(Double Stranded DNA). Then the rheumy I had been seeing was out indefinitely, found out later he was ill. His partner took over my case. He said that I must take plaquenil and a baby aspirin each day. I researched this and found out the meds were very dangerous, I decided not to take the meds and research more.
Then the new doctor that was taking over the case said that I would need to go see him at another office that was an hour away. I decided not to continue with him and got the name of a new rheumy.
The new rheumy didn't work out , and then my neighbor gave me a recommendation of their rheumy that they liked ,so I went to see her. She is the same rheumy that I have today, she is a pretty good doctor, but has many flaws with her thinking. My highest ANA was 1:160 and I have DS DNA and Antiphosholipid antibodies, this rheumy believes from my blood work and my symptoms that I have full fledged Systemic Lupus . This rheumy offered me medications but said it was my choice whether I take them or not, and I have chosen not to. That is one thing that I appreciate about this rheumy is she gave me the choice and did not force me to take meds.(If you are presently on medications NEVER stop taking them without a physician's or medical professionals help and monitoring!!!)
The story continues when I met Dr. Gizoni (a nutritional kinesiologist) on one of my first posts on my original Lupus Hope blog http://www.lupushope.blogspot.com/. Once I met her I changed my diet and the rest is history I have felt so much better with this change in diet.
PS I told my present rheumy that I was going to change my diet and she said do what you want but it doesn't make a difference what you eat(mind you,she wrote 2 papers on Celiac Disease (problem with digesting gluten) and Lupus going together hand in hand!!!!)
Old Lupus Symptoms... Problems of the Past
I started my new diet plan in January 2008, most symptoms were already gone by May 2009 but I have felt better day after day. Here are the changes as of October 2010.
I like to let people see how I have helped myself and also to let my doctors know my story)
Red Face(gone) extremely rare get a red face if I am in contact with certain allergic foods)
Acid Reflux (gone)
Numbness in my arms/hands (gone)
Double Vision/blurry vision (gone)
"unexplained" Grand Mal Seizure (2 years on Tegretol, then was weaned off) (gone)
Migraines(plus felt like a knife in my neck too with the migraine pain/eye aura too)(gone)
Sinus pain and pressure(but no dripping,discharge) (gone)
Dark spots in my field of vision(couldn't see there, like when someone takes a flash photo of you)(gone)
Dizziness( to the point I had to lay down and not move) (gone)
Bloody Noses with heavy clots at the end (gone)
Sores in my nose and mouth(occasionally still get them, sometimes usually before a cold)
Colds are VERY RARE one/two a year if that
Restless Leg Syndrome(gone)
"Panic attacks" may have been allergy related (read Theron Randolph book(s)) (gone)
Sometimes feel like I'm off balance "lean to the right"(still can walk, don't fall) (gone)
Lose my balance a lot(I stumble, but don't fall) (still sometimes/but happened all my life)
When driving if I looked down,to change radio station, and back up at the road felt dizzy, disoriented like my eyes would not focus quickly (gone)
Cervical pre-cancer cells(had a cervical conization to remove them)(gone and hope it stays that way)
Mass in breast(after many health changes and stepped up (every 4-6 months) mammos the doctor said the mass "resolved itself". ie: it went away (gone)
A doctor scared me in TX and said that he thought I had MS(Multiple Sclerosis) I was tested and found not to have that.
I have had many EEG's to check for seizure activity all were normal since the one seizure that I had. I had MRI's to check for weakened blood vessels all were normal (my mom had a blood vessel burst in her brain and she died from it, the doctor said it is worth checking me as it can be hereditary- GET YOUR B12 levels CHECKED!!! low B12 can cause your blood vessels to thin and eventually break- any doctor can check for B12 levels but you usually need to ask them to.)
Also had MRI's to check for MS, all normal
Discoid Lupus(sores on scalp and face from sun exposure)(during the summer I had an occasional pink skin on my nose that was sensitive but it would heal itself without becoming an open sore- now extremely rare to even get a pink spot!)
Joint pain all over my body(only if I eat something I am allergic to I don't do this on purpose sometimes companies have cross contamination or are labelled Gluten Free and they are not really...)
A new symptom is heart palpitations (2009/10) I had everything checked and can't find a reason for these but they are not very often. (Found out through a blood test that I have Hashimoto's Thyroiditis this could cause heart palpitations as well as mercury toxicity which I have also, found that out from a provocation urine test with DMSA not a regular blood test) Heart palpitations have gone!
As of June 2009 blood tests I still have Antiphospholipid Antibodies, Cardiolipin Antibodies, Double-stranded DNA, Positive ANA . I will get another blood test run in December to check and hopefully those Lupus markers will be gone... (In December 2009 my blood tests still show the same Lupus markers... : ( Need to go for another blood test soon December 2010)
Most of my symptoms are long gone and I attribute it to taking care of myself and finding out my allergies and avoiding those foods and lessening stress(as much as possible) and my"Power Eating"(eating almost everyday for nutrition...OK I still eat my chocolate, and an occasional goody here or there)
I like to let people see how I have helped myself and also to let my doctors know my story)
Red Face(gone) extremely rare get a red face if I am in contact with certain allergic foods)
Acid Reflux (gone)
Numbness in my arms/hands (gone)
Double Vision/blurry vision (gone)
"unexplained" Grand Mal Seizure (2 years on Tegretol, then was weaned off) (gone)
Migraines(plus felt like a knife in my neck too with the migraine pain/eye aura too)(gone)
Sinus pain and pressure(but no dripping,discharge) (gone)
Dark spots in my field of vision(couldn't see there, like when someone takes a flash photo of you)(gone)
Dizziness( to the point I had to lay down and not move) (gone)
Bloody Noses with heavy clots at the end (gone)
Sores in my nose and mouth(occasionally still get them, sometimes usually before a cold)
Colds are VERY RARE one/two a year if that
Restless Leg Syndrome(gone)
"Panic attacks" may have been allergy related (read Theron Randolph book(s)) (gone)
Sometimes feel like I'm off balance "lean to the right"(still can walk, don't fall) (gone)
Lose my balance a lot(I stumble, but don't fall) (still sometimes/but happened all my life)
When driving if I looked down,to change radio station, and back up at the road felt dizzy, disoriented like my eyes would not focus quickly (gone)
Cervical pre-cancer cells(had a cervical conization to remove them)(gone and hope it stays that way)
Mass in breast(after many health changes and stepped up (every 4-6 months) mammos the doctor said the mass "resolved itself". ie: it went away (gone)
A doctor scared me in TX and said that he thought I had MS(Multiple Sclerosis) I was tested and found not to have that.
I have had many EEG's to check for seizure activity all were normal since the one seizure that I had. I had MRI's to check for weakened blood vessels all were normal (my mom had a blood vessel burst in her brain and she died from it, the doctor said it is worth checking me as it can be hereditary- GET YOUR B12 levels CHECKED!!! low B12 can cause your blood vessels to thin and eventually break- any doctor can check for B12 levels but you usually need to ask them to.)
Also had MRI's to check for MS, all normal
Discoid Lupus(sores on scalp and face from sun exposure)(during the summer I had an occasional pink skin on my nose that was sensitive but it would heal itself without becoming an open sore- now extremely rare to even get a pink spot!)
Joint pain all over my body(only if I eat something I am allergic to I don't do this on purpose sometimes companies have cross contamination or are labelled Gluten Free and they are not really...)
A new symptom is heart palpitations (2009/10) I had everything checked and can't find a reason for these but they are not very often. (Found out through a blood test that I have Hashimoto's Thyroiditis this could cause heart palpitations as well as mercury toxicity which I have also, found that out from a provocation urine test with DMSA not a regular blood test) Heart palpitations have gone!
As of June 2009 blood tests I still have Antiphospholipid Antibodies, Cardiolipin Antibodies, Double-stranded DNA, Positive ANA . I will get another blood test run in December to check and hopefully those Lupus markers will be gone... (In December 2009 my blood tests still show the same Lupus markers... : ( Need to go for another blood test soon December 2010)
Most of my symptoms are long gone and I attribute it to taking care of myself and finding out my allergies and avoiding those foods and lessening stress(as much as possible) and my"Power Eating"(eating almost everyday for nutrition...OK I still eat my chocolate, and an occasional goody here or there)
So You Have Lupus... What Do You Do Next?
This is a repost of things that I feel helped me tremendously and things I'd like to pass on to all of you...Here are some steps I recommend that you try if you are diagnosed with Lupus or any other autoimmune disease:
1)Keep a food/symptom diary. This will show if you have a repeated reaction to a food that you need to avoid to feel better.
2)Also create a health "binder" the three hole type that you can put all your pertinent health information : copies of your blood tests, questions and research articles for your doctor/s, supplements, medications you are taking, allergy testing, etc (I also put in a copy of my blog in my health binder.)
3)Get tested for Celiac disease, do this BEFORE you go Gluten Free if you can. The test will not be accurate unlesss you are presently eating gluten. (often Lupus and Celiac go hand in hand,check the internet for articles)
4)Get a complete blood test from your health practitioner and also test if you are deficient in Vitamin D, Magnesium, Calcium, B12 and all the rest of the micronutrient testing too http://www.spectracell.com/micronutrient-testing-comprehensive-nutritional-panel/)deficiency in stomach acid. Check mercury levels,(and other heavy metals tests too),hormone levels, and thyroid function, adrenal function, parasites, candida, viruses in the blood, check CRP and homocysteine levels. Check for osteoporosis, bone density. Try a Metametrix Cardio ION blood test if you can afford it. This test includes many of the above tests in one all inclusive test. When you know what your body is lacking correct it with the proper foods/supplements.
5)Test for allergies(with nutritional kinesiology/muscle testing or IgG or IgE blood testing or ALCAT tests) (allergies and autoimmune diseases go hand in hand too again check the internet- look up "leaky gut" too) . Or try an elimination diet Dr. Cranton has a GREAT one!
http://www.drcranton.com/elimination_diet.htm
6)Avoid all foods you test allergic/intolerant to.
7)Detox your body(safely) don't try anything too wacky... I like eating tons of organic veggies and fruits and making fruit or veggie juices(always fresh fruit or veggies) or smoothies(with fresh or frozen fruits/veggies). Research enemas/colonics. Sweat with a sauna(far infrared is the best) and sweat with exercise too.
8)Flood your body with nutrients, eat super healthy foods,seasonal foods, raw food diets, macrobiotic diets, drink fresh homemade juices, green smoothies, certified organic food, lots less salt(if you overdo) use sea salt and sea weeds, not table salt, NEVER eat processed foods, don't drink alcohol, don't smoke, have lots of Omega 3's, no soda, avoid too much caffeine/coffee, no trans fats, no artificial sweeteners, less real sugar or no real sugar. Chew each mouthful of food many times to aid in digestion, swirl juices smoothies in your mouth to be sure they are mixed with saliva before swallowing. Try to eat in a peaceful environment.
9)Exercise(don't laugh at me) I know you are in pain, try small steps, go get the mail, walk your kids to school, park further out from the grocery store, walk walk walk anywhere you can. Stretch! Yoga Or Tai Chi or Pilates. One thing to remember, DO NOT overdo on your good days, always strive to end early, don't push yourself or you will hurt and not be able to do ANYTHING tomorrow. Try rebounding(mini trampoline)great for your immune system and cell health! Exercise also helps move your lymph gland fluids!
10)Rest when you need to, say "no" if you are too tired!
11)Stress less... try not to sweat the small stuff, practice breathing exercises, many CD's are available at your local library, Andrew Weil has some excellent CD's on breathing/relaxation visualization and healing. Watch comedies, read joke books LAUGH!!!
12)Feng Shui-or lessen the clutter, clean your environment(don't laugh at me) I know you are too tired to clean! Try to do a little at a time or at least clean your bedroom and that can be your retreat...
13) Surround yourself with uplifting and supportive people and relationships, and do work on talking to yourself properly and having faith in yourself. Make sure you think positively or learn to, do impeccable self care and put yourself at the top of your list of important people!
14Do macrobiotic "body scrubbing" (see the internet for articles) You skin is your largest detox organ, doing this helps to detox your body.
15) Try reflexology, reiki, massage, NAET, acupuncture, Active Release Therapy, Cranio-Sacral Therapy, Chiropractic, a therapist to heal old childhood hurts.
16)See a holistic dentist, get your mercury amalgams taken out if you feel that it's necessary.
17)Detox your house and your work space and your world as much as possible.What is in your soap,shampoo, your deodorant, your toothpaste,your make up, your shaving cream,etc.?Your skin absorbs everything into your body. Try to get a shower water filter, or a whole house water filter(chlorine is a nasty chemical). Don't use bleach in your laundry, get a environmentally safe laundry soap, dishwasher soap. Don't use aluminum pans/foil(at least don't let the aluminum foil touch your food, use less canned products many are coated inside with harmful chemicals, don't use teflon pans, don't wear cheap jewelry many have lead in them and other harmful chemicals, don't wear nail polish. Home carpets/rugs and paints have many nasty chemicals in them try to find environmentally safe home decor items. Use wood, stone metal rather than plastic etc. Avoid phlalates in many toiletry items(soaps, shampoos,perfume,etc.)Get an air purifier and use it or open the windows wide and air out your house periodically EVEN in the winter.Keep house plants in your major living areas, living room kitchen and bedroom they naturally filter the air. Use natural home cleaners such as vinegar and baking soda. Read the labels, look up chemicals on the internet. Some are very scary! Wear organic cotton clothing, or look for bamboo fabrics. Use glass to store foods instead of plastic. NEVER heat food in plastic in the microwave, better yet don't use a microwave oven at all. Be careful of plastic water bottles left in the car on a hot day, plastics leach chemicals into food and water when heated.
18) Find yourself a doctor or doctors that you can trust and believe in (the hardest and most important item)
I have found that Holistic Doctors, Holistic MD's, Chinese Medicine Doctors and Naturopaths, Chiropractors, and Functional Medicine Doctors, are going to use less or no medications and believe more that your diet matters immensely and also help you find out if you have any food or environmental allergies/intolerances. At present, 2010, I have a classically trained rheumy( just go to her for blood work),2 holistic MD's, a naturopath, my general practitioner,a holistic chiropractor, a holistic gynecologist, and an accupuncturist. I haven't seen any of them lately but will call the holistic MD for a check up soon, also wanted to see my naturopath... Remember the doctor works for you, you pay the doctor the big bucks and they should earn their keep. If the doctor makes you do things that are uncomfortable, find a new doctor, there are millions out there, ask friends for recommendations (make sure you get these!) or read books/ articles or go to seminars/talks that the doctor gives (not all doctors do this but it makes it so easy to see if their beliefs mesh with yours...)
Read Pain Free in 6 Weeks... by Sherry Rogers MD and/or any other Sherry Rogers books, Read
The UltraMind Solution by Mark Hyman MD, go to:
http://lupushopehealingplan.blogspot.com/2009/10/books-to-read-on-healing_30.html for more books to read on healing Lupus and other diseases.
.***Always ask questions and keep reading and learning about your disease. Doctors don't know everything and there is so much information to learn. You may stumble on something that can help you and you can bring it to your doctor's attention. Good Luck!
1)Keep a food/symptom diary. This will show if you have a repeated reaction to a food that you need to avoid to feel better.
2)Also create a health "binder" the three hole type that you can put all your pertinent health information : copies of your blood tests, questions and research articles for your doctor/s, supplements, medications you are taking, allergy testing, etc (I also put in a copy of my blog in my health binder.)
3)Get tested for Celiac disease, do this BEFORE you go Gluten Free if you can. The test will not be accurate unlesss you are presently eating gluten. (often Lupus and Celiac go hand in hand,check the internet for articles)
4)Get a complete blood test from your health practitioner and also test if you are deficient in Vitamin D, Magnesium, Calcium, B12 and all the rest of the micronutrient testing too http://www.spectracell.com/micronutrient-testing-comprehensive-nutritional-panel/)deficiency in stomach acid. Check mercury levels,(and other heavy metals tests too),hormone levels, and thyroid function, adrenal function, parasites, candida, viruses in the blood, check CRP and homocysteine levels. Check for osteoporosis, bone density. Try a Metametrix Cardio ION blood test if you can afford it. This test includes many of the above tests in one all inclusive test. When you know what your body is lacking correct it with the proper foods/supplements.
5)Test for allergies(with nutritional kinesiology/muscle testing or IgG or IgE blood testing or ALCAT tests) (allergies and autoimmune diseases go hand in hand too again check the internet- look up "leaky gut" too) . Or try an elimination diet Dr. Cranton has a GREAT one!
http://www.drcranton.com/elimination_diet.htm
6)Avoid all foods you test allergic/intolerant to.
7)Detox your body(safely) don't try anything too wacky... I like eating tons of organic veggies and fruits and making fruit or veggie juices(always fresh fruit or veggies) or smoothies(with fresh or frozen fruits/veggies). Research enemas/colonics. Sweat with a sauna(far infrared is the best) and sweat with exercise too.
8)Flood your body with nutrients, eat super healthy foods,seasonal foods, raw food diets, macrobiotic diets, drink fresh homemade juices, green smoothies, certified organic food, lots less salt(if you overdo) use sea salt and sea weeds, not table salt, NEVER eat processed foods, don't drink alcohol, don't smoke, have lots of Omega 3's, no soda, avoid too much caffeine/coffee, no trans fats, no artificial sweeteners, less real sugar or no real sugar. Chew each mouthful of food many times to aid in digestion, swirl juices smoothies in your mouth to be sure they are mixed with saliva before swallowing. Try to eat in a peaceful environment.
9)Exercise(don't laugh at me) I know you are in pain, try small steps, go get the mail, walk your kids to school, park further out from the grocery store, walk walk walk anywhere you can. Stretch! Yoga Or Tai Chi or Pilates. One thing to remember, DO NOT overdo on your good days, always strive to end early, don't push yourself or you will hurt and not be able to do ANYTHING tomorrow. Try rebounding(mini trampoline)great for your immune system and cell health! Exercise also helps move your lymph gland fluids!
10)Rest when you need to, say "no" if you are too tired!
11)Stress less... try not to sweat the small stuff, practice breathing exercises, many CD's are available at your local library, Andrew Weil has some excellent CD's on breathing/relaxation visualization and healing. Watch comedies, read joke books LAUGH!!!
12)Feng Shui-or lessen the clutter, clean your environment(don't laugh at me) I know you are too tired to clean! Try to do a little at a time or at least clean your bedroom and that can be your retreat...
13) Surround yourself with uplifting and supportive people and relationships, and do work on talking to yourself properly and having faith in yourself. Make sure you think positively or learn to, do impeccable self care and put yourself at the top of your list of important people!
14Do macrobiotic "body scrubbing" (see the internet for articles) You skin is your largest detox organ, doing this helps to detox your body.
15) Try reflexology, reiki, massage, NAET, acupuncture, Active Release Therapy, Cranio-Sacral Therapy, Chiropractic, a therapist to heal old childhood hurts.
16)See a holistic dentist, get your mercury amalgams taken out if you feel that it's necessary.
17)Detox your house and your work space and your world as much as possible.What is in your soap,shampoo, your deodorant, your toothpaste,your make up, your shaving cream,etc.?Your skin absorbs everything into your body. Try to get a shower water filter, or a whole house water filter(chlorine is a nasty chemical). Don't use bleach in your laundry, get a environmentally safe laundry soap, dishwasher soap. Don't use aluminum pans/foil(at least don't let the aluminum foil touch your food, use less canned products many are coated inside with harmful chemicals, don't use teflon pans, don't wear cheap jewelry many have lead in them and other harmful chemicals, don't wear nail polish. Home carpets/rugs and paints have many nasty chemicals in them try to find environmentally safe home decor items. Use wood, stone metal rather than plastic etc. Avoid phlalates in many toiletry items(soaps, shampoos,perfume,etc.)Get an air purifier and use it or open the windows wide and air out your house periodically EVEN in the winter.Keep house plants in your major living areas, living room kitchen and bedroom they naturally filter the air. Use natural home cleaners such as vinegar and baking soda. Read the labels, look up chemicals on the internet. Some are very scary! Wear organic cotton clothing, or look for bamboo fabrics. Use glass to store foods instead of plastic. NEVER heat food in plastic in the microwave, better yet don't use a microwave oven at all. Be careful of plastic water bottles left in the car on a hot day, plastics leach chemicals into food and water when heated.
18) Find yourself a doctor or doctors that you can trust and believe in (the hardest and most important item)
I have found that Holistic Doctors, Holistic MD's, Chinese Medicine Doctors and Naturopaths, Chiropractors, and Functional Medicine Doctors, are going to use less or no medications and believe more that your diet matters immensely and also help you find out if you have any food or environmental allergies/intolerances. At present, 2010, I have a classically trained rheumy( just go to her for blood work),2 holistic MD's, a naturopath, my general practitioner,a holistic chiropractor, a holistic gynecologist, and an accupuncturist. I haven't seen any of them lately but will call the holistic MD for a check up soon, also wanted to see my naturopath... Remember the doctor works for you, you pay the doctor the big bucks and they should earn their keep. If the doctor makes you do things that are uncomfortable, find a new doctor, there are millions out there, ask friends for recommendations (make sure you get these!) or read books/ articles or go to seminars/talks that the doctor gives (not all doctors do this but it makes it so easy to see if their beliefs mesh with yours...)
Read Pain Free in 6 Weeks... by Sherry Rogers MD and/or any other Sherry Rogers books, Read
The UltraMind Solution by Mark Hyman MD, go to:
http://lupushopehealingplan.blogspot.com/2009/10/books-to-read-on-healing_30.html for more books to read on healing Lupus and other diseases.
.***Always ask questions and keep reading and learning about your disease. Doctors don't know everything and there is so much information to learn. You may stumble on something that can help you and you can bring it to your doctor's attention. Good Luck!
Books to read on Healing
You can request many of these books through your local library. Ask the librarian for the book/s you are interested in and if they don't have the book, many times they can do an interlibrary loan (get it from another library).
"The Lupus Recovery Diet" by Jill Harrington (title says it all)
"Pain Free in 6 weeks" by Sherry RogersMD (total toxic load on the body, ways to heal, holistic)
"The Gluten Connection" by Shari Leiberman (diseases that can be exacerbated by gluten)
"Gluten Toxicity..." by Shelly L. Stuart RN (Outrageous book on what gluten can do to your body to cause a host of health issues/diseases)
"Living on Live Food" by Alissa Cohen (A raw food diet, tons of recipes and testimonies)
"The Great Life Diet" by Denny Waxman (A macrobiotic diet)
" The MS Recovery Diet" by Anne Sawyer (healing MS through diet)
"Living Well with Autoimmune Disease..." Mary J. Shomon (holistic)
"The Ageless Woman" by Serafina Corsello, MD (MD+alternative/holistic)
"Dr. Mercola's Total Health Program" by Dr Joseph Mercola (diet for your specific body type)
"Arthritis..." 2nd Edition by Ellen Kamhi PhD RN HNC and Eugene Zampieron ND MH(AHG)(Holistic and Alternative by the "Natural Nurse" and a Naturopathic Doctor)
"An Alternative Approach to Allergies" by Theron Randolph MD and Ralph W. Moss PhD
"Celiac Disease a Hidden Epidemic" Peter H.R. Green MD and Rory Jones
"Food That Helps Win the Battle Against Fibromyalgia" by Deirdre Rawlings N.D., Ph.D.
"Breakthrough, Eight Steps to Wellness.." by Suzanne Somers(interviews cutting edge doctors)
""The UltraMind Solution.." by Mark Hyman MD(healing your broken brain, through healing your body first)
" The Cure Heal Your Body, Save Your Life.." by Dr. Timothy Brantley
"52 Ways to a Healthy You" by Laura Lewis
"The Women's Guide to Thyroid Health" by Kathryn R. Simpson, MS (Holistic, root cures, thyroid disease)
"Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal" by Datis Kharrazian, DHSc, DC, MS
A link to my recommended raw food "un-cookbooks" (you know what I mean!)
http://lupushopecookbook.blogspot.com/2009/08/great-raw-food-books.html
Some of my favorite Vegan Cookbooks
http://lupushopecookbook.blogspot.com/2010/05/some-vegan-and-other-cookbooks.html
"The Lupus Recovery Diet" by Jill Harrington (title says it all)
"Pain Free in 6 weeks" by Sherry RogersMD (total toxic load on the body, ways to heal, holistic)
"The Gluten Connection" by Shari Leiberman (diseases that can be exacerbated by gluten)
"Gluten Toxicity..." by Shelly L. Stuart RN (Outrageous book on what gluten can do to your body to cause a host of health issues/diseases)
"Living on Live Food" by Alissa Cohen (A raw food diet, tons of recipes and testimonies)
"The Great Life Diet" by Denny Waxman (A macrobiotic diet)
" The MS Recovery Diet" by Anne Sawyer (healing MS through diet)
"Living Well with Autoimmune Disease..." Mary J. Shomon (holistic)
"The Ageless Woman" by Serafina Corsello, MD (MD+alternative/holistic)
"Dr. Mercola's Total Health Program" by Dr Joseph Mercola (diet for your specific body type)
"Arthritis..." 2nd Edition by Ellen Kamhi PhD RN HNC and Eugene Zampieron ND MH(AHG)(Holistic and Alternative by the "Natural Nurse" and a Naturopathic Doctor)
"An Alternative Approach to Allergies" by Theron Randolph MD and Ralph W. Moss PhD
"Celiac Disease a Hidden Epidemic" Peter H.R. Green MD and Rory Jones
"Food That Helps Win the Battle Against Fibromyalgia" by Deirdre Rawlings N.D., Ph.D.
"Breakthrough, Eight Steps to Wellness.." by Suzanne Somers(interviews cutting edge doctors)
""The UltraMind Solution.." by Mark Hyman MD(healing your broken brain, through healing your body first)
" The Cure Heal Your Body, Save Your Life.." by Dr. Timothy Brantley
"52 Ways to a Healthy You" by Laura Lewis
"The Women's Guide to Thyroid Health" by Kathryn R. Simpson, MS (Holistic, root cures, thyroid disease)
"Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal" by Datis Kharrazian, DHSc, DC, MS
A link to my recommended raw food "un-cookbooks" (you know what I mean!)
http://lupushopecookbook.blogspot.com/2009/08/great-raw-food-books.html
Some of my favorite Vegan Cookbooks
http://lupushopecookbook.blogspot.com/2010/05/some-vegan-and-other-cookbooks.html
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