Hello All. It appears my disease is taking a turn for the worse as far as remission length. I was wondering if there is a special diet or foods that will improve my remission times. I have high blood pressures, and Type II diabetes both which are related to my prednisone. My neurologist has recently decrease my dosage from 10mg per day to 5mg per day for a month, then decrease to 2.5mg per day for a month and then stop. He and I think this will help my b/ps and eliminate blood sugar issues. I've also take anti-coagulants because I've had two different bouts with PE (pulmonary emboli) in 2005 and 2010 for unknown reasons. So there are certain foods that are not part of my diet. Example vitamin K rich foods.
But I love to cook and I want to start a vegetable garden for exercise and healthy diet. I have one child in high school and 3 more in college, so I want to be active and somewhat healthy while I'm able.
I live in North Carolina so most plantings are possible in my state. I love lentils, soups, breads the most.
Dairy is ok especial cheeses. LOL! Fish, shellfish, lamb, chicken and of-course beef. I love a good steak. I know in moderation. I like preparing new recipes and so does my husband. So if anyone has any that help our remission and or symptoms, it would be most helpful.
Hi Missy, I believe a good anti-inflammatory diet full of fresh veggies is the way to go. I also think things like cheeses, breads and other processed foods are triggers
for inflammation. It’s not easy, and I wish I could stick to this as I say it.
Good luck!
Mary
I am 37 and have had cidp for 2 yrs. and I was just told this week that gluten free diet is now mandatory for me. I've only been on it for 5 days but I just started by going to Trader Joe's and totally revamping my kitchen. And everything I've read about seems to make sense now.
I agree with Mary and Mel. A low carb, gluten free diet was recommended to me and it has helped reduce inflammation. However, my symptoms continue to worsen and I start Plasmapheresis next Tuesday. I wish you the best results from your new diet.
Hello All, thank you for your suggestions. I guess gluten-free is the way to go. My family has eliminated most processed foods from our kitchen and I bake most of my breads. My next task is getting good recipes for gluten-free menus so my 15 year old will eat them. Lol, he is not picky but he a meat and potatoes kind of kid. Good luck you guys with plasmapheresis.
I am 37 and have had cidp for 2 yrs. and I was just told this week that gluten free diet is now mandatory for me. I’ve only been on it for 5 days but I just started by going to Trader Joe’s and totally revamping my kitchen. And everything I’ve read about seems to make sense now.
Missy, my physical therapist suggests cutting out sugar since it can be an inflammatory trigger. She suggested using stevia(it's a natural sweetener) in place of the artificial sweeteners. I haven,t started this and it will be hard since I have a whole set of sweet teeth and the holidays are soon upon us. also, I hear liquid dark cherry liquid is also an inflammatory. Best luck to you. I have had very little relief from my IVIg treatments so anything suggested might be helpful. Pumpkin
Hi Mel, I'm a little nervous about getting a port put in and the whole Plasmapheresis thing. My neurologist told me I'd be on it for 6 weeks but you have been on it for 18 months. How was getting the port put in and how are the sessions? Thanks
Mel said:
I wish you the best with the pharesis. I've been on it for 18 months now.
Hi Icthruu, I've been getting IVIG since 2008. So for me getting a port was very simple and easy since I was asleep during the procedure. The pain is not bad at all. I can not take pain meds. like tylenol or ibuprofen. Even so not much pain. However, getting an IV for me was painful. I'm what is considered " a hard stick". RNs have to call someone from radiology to use a portable ultra sound machine to find a vein after the nurse has searched and tried to get a needle in. Usually a 22 gauged needle. Anything smaller and the blood would not flow. After 3 tries, the nursing protocol requires no more than 3 stick to get an iv started. So for me, an ultrasound RN is called to assist with access. Very time consuming. So now I have a port. During my treatments (at home, yea) the RN will access my port and after treatment (5 days straight every 8 weeks) she will de-access or I will keep it in place depending on what I have planned for the next day. Sometimes I de-access because I have a dog and she is very active and once she pulled the needle out of my chest by jumping on me. Good thing my nurse was here. She freaked out but it was no big deal for me. lol. I guess looking at from her perspective, I could have started heavy bleeding from my port. Anyway, getting a port is a great choice for me. When I need to go to the emergency room, I always tell the care nurse. They really like the idea of a patient having a port. It makes getting lab work much easier. And giving pain meds a breeze. Also they can hookup IV fluids too. Your arms can move freely for blood pressures and other things.
Missy, thank you so much for your informative reply. I am much more "at ease" about the whole thing now.
Best Regards,
Mark
Missy said:
Hi Icthruu, I've been getting IVIG since 2008. So for me getting a port was very simple and easy since I was asleep during the procedure. The pain is not bad at all. I can not take pain meds. like tylenol or ibuprofen. Even so not much pain. However, getting an IV for me was painful. I'm what is considered " a hard stick". RNs have to call someone from radiology to use a portable ultra sound machine to find a vein after the nurse has searched and tried to get a needle in. Usually a 22 gauged needle. Anything smaller and the blood would not flow. After 3 tries, the nursing protocol requires no more than 3 stick to get an iv started. So for me, an ultrasound RN is called to assist with access. Very time consuming. So now I have a port. During my treatments (at home, yea) the RN will access my port and after treatment (5 days straight every 8 weeks) she will de-access or I will keep it in place depending on what I have planned for the next day. Sometimes I de-access because I have a dog and she is very active and once she pulled the needle out of my chest by jumping on me. Good thing my nurse was here. She freaked out but it was no big deal for me. lol. I guess looking at from her perspective, I could have started heavy bleeding from my port. Anyway, getting a port is a great choice for me. When I need to go to the emergency room, I always tell the care nurse. They really like the idea of a patient having a port. It makes getting lab work much easier. And giving pain meds a breeze. Also they can hookup IV fluids too. Your arms can move freely for blood pressures and other things.
After reading all you folks had to say about diet, I think I agree with my friend who had quadruple bipass at 50 (athletic, slender, fit, no history of previous heart disease, but a family history). After his surgery and all the diet restrictions, he said the best rule of thumb for a healthy diet is.....
Hello Missy, I am new here but I am very excited and glad to found this site. I too have the same question if there is a good diet to help our remission .I was watching the show on TV with 2 or 3 doctor's on there a week ago the topic was immune deceases, they talk symptoms among other things including neuropathy but what caught my attention was the diet. They say we should not eat to much process foods like cans, box or anything with ingredients to keep them on the shelf for along time. also process meat. They suggested eat natural food more often and less dairy product and red meat. When my son visit me and stay with me for awhile to help out he also suggest to change my diet ,try to eat more natural foods but my husband always cooking what he likes steaks mash potatoes in the box or envelop can vegetable mostly very greasy foods and very rich and heavy to digest. My son changed all that for me when he was here he cook separate food for me and him, he show me how to make water kefir, how to fix nutritious foods without to much meat. I felt almost normal while he was here when he left I immediately fall into my husband cooking again because he said it's to expensive to buy natural foods. All my symptoms came back within weeks I had another IVIG and none of it help me, two weeks ago I had another nerve test and the changes was very little.
Now I start my own diet .I purchased very good juicer along with the diet my son started for me how to make protein shakes with tofu and fruits ,steaming veg. with very tasty natural spices. I'm making my own recipe according to my taste buds. I am not diabetic but I'm also staying away from to much salt and sugar I now uses Himalayan salt provided with my son .I drink cup of coffee a day with touch of honey .so far I can now walk little better ,not much pain.
Other thing if you must used process food stay away from gluten. I hope this information help you .
Check out website Simply sugar and Gluten Free for great recipes.
Missy said:
Hello All, thank you for your suggestions. I guess gluten-free is the way to go. My family has eliminated most processed foods from our kitchen and I bake most of my breads. My next task is getting good recipes for gluten-free menus so my 15 year old will eat them. Lol, he is not picky but he a meat and potatoes kind of kid. Good luck you guys with plasmapheresis.