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Aug 23, 2018 · Crohn's Disease - does cannabis help? in Digestive Health

Hi. My autoimmune disease has some of the same symptoms. I was given Amitripyline to help my muscles relax and to mellow me out, then got advice to follow a LowFOD diet. The combination worked. I think canibis is good for nausia, but Zofran meltaways work better. Every medication has side effects, the ones surrounding marijuana is it causes depression and brain fog. It's good for short term use for Cancer treatments, to overcome nausia, but for pain relief…no, it's never helped me. For me, the Amitriptline allows me to relax and sleep and not be hyper-sensitive to pain, if that makes sense.

Aug 22, 2018 · Desperately Trying to Get Diagnosed in Autoimmune Diseases

Ok. You've tried whole foods and they don't make a difference. Jot that down in your medical diary. I get vitamin levels checked monthly every two months, when they test my ANA levels, I request vitamin check too. Since you do not drink milk, and going in the sun is bad, get over the counter vitamin D. Take everyday. My only question is, is there mold in your basement? It causes a lot of problems, mold, it can aggravate immune system, causing new problems ontop of the old. To me…everything is a process of elimination. Cover all bases. Since whole foods is a non-issue, buy canned vegatable soups. They are cheaper than a pre-made salad. You also may qualify for food stamps, due to disability, and if not, call a local food bank…tell them you are vegan, and you can get canned veggies and fruits, juices, and you don't have to prove you are poor, it's private. Don't feel guilty, this is why people donate, to care for those who need it. I have not worked in three years..it's a lifestyle change and some days I'm so sick I cannot get off the couch, and moved my bedroom on main floor next to bathroom (old den). These are just my thoughts.

Aug 22, 2018 · Desperately Trying to Get Diagnosed in Autoimmune Diseases

Hi. All I can do is offer advice. First, create a diary of all your doctor visits including contact information, and obtain copies of all your tests, you are entitled to them. Keep them all together, in order, and bring them to next doctor's appointments…the reason is some doctors are lazy and don't contact the last doctor or review last tests unless it's put infront of them. They get too busy, not that they don't care. This will avoid being re-tested for some stuff you don't need. One tidbit I learned was if you are low on potassium, please look at test results for that, you will get muscle twitches and nausia. And, if you take potassium you must take a magnesium with it or else the body won't absorb it. It took many doctors and scoping and damage to my esaphagas until one doctor finally said..you are low on potassium. Then another, after about a year to say…take magnesium with potassium to digest it. Wow. That took years to figure out. I finally learned to keep a diary of my doctor visits and tests after I was tested for Lyme's disease five times. Now, doctors need to benchmark ANA levels, and space them a couple months apart, that's standard. Now, holistically, you can help with brain fog by going gluten-free, and avoid processed food with chemicals. Try whole foods for a while, see if it makes a difference. Read every label. Two diets come to mind to try, the Keto diet and the LAC diet. Benchmark any improvements or failures with that in your medical diary. Some autoimmune diseases are drug-induced, or environmentally triggered with a heredity of a minor immune predisposition. So with that, taking daily multi-vitamin, extra vitamin C, D can help your body help itself. Immune disorders tend to suck vitamins out if your system faster than you can eat the foods that contain them. I buy the gummy versions of vitamins and call it 'my desert', lol. But please read tests about vitamin and electolite levels, if you don't see them, have next doctor get that done for you, and you can ask lab to send you a copy to your house, again, you are entitled to it. I will sit on-line and find out what every test means, again…I learned the hard way…sometimes waiting for doctor to do the job, it won't get done. You are lucky, you are young and your body can bounce back faster than someone who's older with the same issue. Have faith, you are not alone. Write down your concerns and questions and have them ready for your next doctor appointment, don't give up..and being your own advocate is the best thing you can do. Good luck!

Aug 22, 2018 · Hormone Replacement Therapy after several misdiagnoses in Autoimmune Diseases

My advice is to create a time-line in a note book of all your doctor's visits and doctors contact information. Like a diary. Have all your questions and concerns in writing to make the most of your visit. Then, get copies of every test taken, keep clipped together with a time-line, this will help doctor and avoid re-taking of some tests. You need to benchmark all medications taken, including vitamins. Do this 'before' your next doctor's appointment, including before you get to Mayo clinic. You are lucky, I cannot afford to go to a Mayo clinic location and must rely on primary doctors and a Rhumy that is inexperienced with my rare immune disease. Prednisone was ineffective for me. I found its a standard issue 'first try' drug. Once you go off of it, you need advice on correct diet to lose weight, too much weight can only aggravate joints, not help. It's a double edged sword! I found the best diet for me was the LAC diet, the Keto diet was too much protien and hard to digest for my rare immune disease, and the LowFOD diet helped with digestion, but still did not help with my over-all inflammation. I do believe some of these autoimmune diseases are environmentally triggered, drug induced, and not all clear cut or defined. You may find treatments include holistic things you can do to counter inflammation to minimize damage, once you get a diagnosis..you are doing the right thing to go to Mayo clinic! Good luck!

Aug 20, 2018 · APS w/SLE 'Anyone know what these spots are called? in Autoimmune Diseases

It looks most like 'mixed cryogobulinemia' with non-hepititis SLE and APS. The cure is plasmapharesis. Where can I get that?!

Aug 20, 2018 · APS w/SLE 'Anyone know what these spots are called? in Autoimmune Diseases

Thank you. I checked both sites out. It doesn't look like there's a cure. 🙁

Aug 20, 2018 · APS w/SLE 'Anyone know what these spots are called? in Autoimmune Diseases

Here is a better pic. No, no pus or bleeding, just burning pain like I stepped into very hot water or severe sunburn, it feels like tingling, and have muscle spasms, stings like biting flies. The skin has changed color, lots of neuropathy. Hurt to stand on for very long, I mostly sit on couch with them up. I'm seeking a diagnosis so I can get a treatment plan to fix it so I can go back to work. Right now, doctors seem stumped.

Aug 19, 2018 · APS SLE with ITP in Autoimmune Diseases

Hi. I posted another question with a pic of my legs. They burn extra hard tonight. I'm finding it hard to get comfortable in bed. I can't let my feet touch each other, they burn and sting where the blanket touches them. Maybe someone on here has seen these type of spots and can give me some wisdom. I've been off the Plaquenil for two days, and the spots are still intensifying. I had already gone to the emergency room a few days ago, they said they didn't know what spots are and couldn't give me treatment for the pain. Someone must know what I have, what these things are. Is it ITP or CAPS? If so..doesnt that mean TPE is a cure? I cannot walk into an aphorisis center and demand plasma exchange…I need a doctor to confirm things and walk me thru stuff. That's the rub…find a dam doctor who cares. *frustrated, sorry