some new things that are helping me
So I have been seeing these new intergrative medicine doctors on top of my regular rheumy to see if I can get any better. They focus on effective therapies from all avenues, western and otherwise, combining the good from them all. I'm sure people on here have tried these things but here's what seems to be working on my lupus and fibro...
Omega 3 fish oils...try taking 2 a day (preferable nordic naturals or some other reputable source b/c the quality is v. important due to mercury levels in fish now)... makes a big difference in my brain fog (took about 2 weeks) and really helps with my stomach pain and problems.
Get tested for food allergies...Had no idea I was allergic to gluten, dairy, eggs and soy. When I cut these foods out (after I had a little cry...still in mourning for bread and cheese) my 10 years of severe stomach problems resolved themselves, the nasea I felt all the time went away too. Severe food allergies aren't always apparent at the time you ingest them, allergies to things like gluten can cause all kinds of inflamation, muscle and joint pain, fatigue and rashes. Dr. says it can take months of being away from gluten to clean out your system and see how it was effecting you. From my tests it shows that my insulin levels and cortisol levels are on the floor...this might explain the cripling fatigue I feel all the time.
Quinton Hypertonic...apparently this stuff has been around for ages, and since it's basically sea water it sounded like complete hooey but it's made a huge difference in the way I feel. Google it for a complete explaination of what it is and why it works but the tests done on athletes have been amazing. My doctor is doing case studies on his patients with a network of other doctors around the world. I feel an immediate reduction of fatigue, sleep better, have 50% less pain when I wake up and some reduction in pain throughout the day in this first week of using it alone.
I've been getting accupuncture which makes me feel good for a couple of hours but is otherwise useless. I've been getting a weekly IV of B12, C, calcium and magnesium to detox and strengthen my system which also makes me feel great for a few hours but hard to tell if it does much else. The most effective thing I'm doing is seeing a shrink which is always effective for people who are chronicaly ill if they feel comfortable with it and find the right person.
I've learned so much on this board and it really pushed me to try and take more control of my health, so thanks. I'm taking a lot less pain meds and sleeping meds but it's a slow process with lupus isn't it. I feel like it's easy to get worse fast but it's a slow climb to get a little bit better...good luck to all.
Thanks very much for sharing this with us!
I also take Omega 3 Fatty Acids and am also allergic to gluten and egg whites.
I'm really glad that your treatments seem to be working so well! Keep us posted!
Hi, Bonnie - I'm glad the new regimen seems to be working well for you - I hope you will continue to keep us posted on how things are going.
Just one word of caution for anyone who might be interested in the Quinton Hypertonic - you should only use this with your doctor's knowledge and approval as Bonnie is doing. It is NOT recommended for anyone with high blood pressure, heart disease or kidney disease, so check with your doctor beforehand.
Bonnie, there are some pretty decent gluten free breads and baking mixes - you can probably find some in a natural food store like Wild Oats or Whole Earth, or order them online. I'm a vegan, so I use rice milk or nut-based milks in cooking - you can find yogurts and puddings made with rice milk which are soy and dairy free. Cheese is a little harder - most of the non-dairy versions contain soy, but I'll look through some of my vegan cookbooks to see if they list any soy-free brands. I use Earth Magic natural buttery spread to replace butter - it's as close as I've come to the real thing, and you can use it for cooking.
Thanks, Bonnie! I've had trouble with fish oil - upset my tummy, but I'm glad it's working for you. It sounds like you haven't had as much luck with acupuncture as I have.
I have been thinking about allergy testing. Right now I have a cold. I don't really want to give up any foods, but I think it might be worth it to know what allergies I have. I think I have some seasonal allergies (probably molds up here in the NW)..........so I guess I just need to get around to it. Is the food allergy test like seasonal allergy tests? I once tried to start an elimination diet to determine food allergies, but it did not work for me - I got extremely ill and couldn't do it again.
Thanks for sharing. I also tested positive for those food allergies - also yeast sensitivity. I tried to eliminate but found I get really dizzy and weak. I didn't try really very hard to stick to it though - so knowing its helping you makes it worth a try. (My biggest thing will be pizza! boo hoo).
That is interesting about the nausea - its has been an ongoing thing for me since lupus.
Thanks for the responses, Marycain is right quinton should only be taken if your doctor is on board with it.
I appreciate the food suggestions, my MIL runs food services for CU Bolder and she showed me how to get whole foods to make out a list of foods that were availible. You can go on there website and do the same thing. My doc recomended cutting down slowly but I noticed such an difference in my tummy that I've cut out @least 90%. He said it would be ok to be gluten free 5 days a week and take a few off, so to the others with these allergies give it a try, it could make your lupus feel so much better!
For those who want to be tested, I only know the way I was tested. There might be other ways but I don't know. They used saliva testing for me. I spit in vials every few hours for a day and they test from that, so no pin pricks or itchy rashes. If you are having tummy problems it's wise to do what me husband affectionaly calls the spit and sh*t. It's totally mortifying, but you can take samples at home and then they can see what is going on in your digestive system top to bottom, in a non-invasive way. I also ended up having too much yeast in my tummy as well as toxoplasmosis( the thing from cats, which I am NEVER around so go figure) and trichonella from pork. With Lupus your immune system is weak and opportunistic bugs that other people would just flush out take up residence easily in our systems.
Sorry to all those with the food allergies too, best of luck.
Interesting! Did you have a Naturopath or MD order the food allergy testing?
My Doctor is both. He has a PhD in family medicine but he's also a naturopath, etc.
I had the RAST testing (blood) because I am so severely allergic to some things that doing a scratch test was too dangerous, according to my allergist. But most of the foods I was allergic to were things I didn't like or eat anyway - shellfish being at the top of the list. Luckily none of my children really inherited any allergies, although my middle son is allergic to cotton of all things.
Bonnie, I think toxoplasmosis is endemic to certain parts of the country and you can get it just by breathing air contaminated by the spoors. Almost everyone in this part of the country tests positive for it and for histoplasmosis too. I tested positive for both although I don't recall actually being sick with either one. But we used to keep horses and still have goats and the allergist told me I probably inhaled the spoors while forking hay.
I had a skin-prick allergy test when I was younger and ended up being allergic to almost everything I was pricked with! :shock:
The woman who was doing it just could not believe it! :lol: