songcanary

My ANA is negative and so are thyroid antibodies. So I assume I don't. Plus, I was worked up by a great rheumy two years ago and he said there's no sign of it. I have fibro but that is not autoimmune, it is CNS.

Annaliese, No the autonomic neuropathy is very mild and not related to an autoimmune cause.

Hi Annaliese, I am having improvement with LDN too. I had this lovely feeling of well being on the 2nd day and I've stayed that way. I've been on 4.5 mg for seven months now. At the five month mark I did have bad stomach pain and headache but my doctor backed off the dose to 3 mg temporarily and it went away. Don't know if it was related or not. This was prescribed by my physiatrist for fibro and it really works at lessening my pain, I love this stuff. I do not see a difference in my BP or HR but I do have much more energy and hardly any fatigue. Which is a pretty big deal for me LOL. I am glad it is helping you!

I also like what Alaska wrote. I got married at a very simple ceremony in front of the fireplace at my grandmother's house. We invited a small group of close friends and family and had the reception there, too. It was lovely and I wouldn't change a thing. We played music on a stereo during the ceremony which my uncle was in charge of, and we danced later in the garage. But I'm telling you, it was the most sincere and fun time for everyone. And I say this having experienced a fancy church wedding long before. It was nice but the marriage lasted two years. So for what? My second marriage has lasted 26 years and that was the simple wedding. The wedding itself is far less important than the marriage. DO NOT let your relatives tell you what to do. This is your life and you should live it in your comfort zone. I am assuming your fiance is hip to your dysautonomia and believe me, he is the most important person involved here. Do it your way and like Alaska said, be realistic. I send you my very best wishes!

Lemons, this is great news. I had the same kind of day, a really good one. I hope you continue to improve and that the job works out. But like you say, if it doesn't, at least you tried. This is the right attitude for success because you free yourself of anxiety. Best wishes!

I was very physically active and running my own successful business when my symptoms started gradually. I pushed for a couple of years before realizing that something serious was going wrong. I got so physically weak at that point that I had to stop everything. Now with the luxury of hindsight, it is obvious to me that unrelenting stress was building up and I did not have good coping skills at the time. And without the boring details, I mean years and years of major stressful events with no let up. Even my rheumatologist, after taking my history, said 'well, then it just becomes DUH!'. He was so right.

I love it. No negative side effects whatsoever. My initial dose was: .1 mg once a day for two weeks .1 mg every other day for one week 1/2 tab every other day for maintenance. My doctor said she starts the dose higher at first because the body initially acts like a sponge and gets you hydrated. Then she backs off to the smallest effective dose to avoid side effects. I really hope this helps you. I have been feeling so much better on it. Good luck!

The LDN increases my energy levels and reduces pain. It is wonderful. But it really hasn't had an effect on my dys symptoms, at least none that I notice.

Well, I am just following the original dosing instructions from my doctor. When I first started it, I took .1 mg once a day for two weeks, then 0.05 mg once a day for a week, then the maintenance dose is 0.05 once every other day. She said initially the body acts like a sponge and gets you hydrated, then she lowers the maintenance dose to avoid side efffects. This regimen has really worked for me. But my BP doesn't bottom out like some do, maybe that's the difference in the reaction, I don't know. I hope you find something that works for you!

When I was a medical transcriptionist we would occasionally run across gems like this. Our laughter always broke up the monotony of typing! Thanks for posting!!

I have been on it for seven months now and I am like Katybug, I've improved with time. I take 0.05 mg once every other day in the morning with food.

Thanks for posting, it was interesting. I just saw my doctor last week. I've been feeling very well lately and she said that if I stay this way for six months, she will start tapering my Florinef very slowly so as not to shock the body. I don't know exactly what she means by 'shock' but it was very good news at any rate. I am not on Effexor, but doxepin, and I will continue that because a few months ago I tried to d/c it and I had the same old bad nausea and chills without it. I hope your next taper goes well! Why do we have to learn all this stuff the hard way?

LOL Decades!!!

Jen, I cannot believe what I am reading. I experienced the same thing as you. For my entire life I had been 'putting out fires' until 2006 when I finally started living like I should. And that is when my symptoms reared their ugly heads. How strange. But a very interesting post!

McKenzie, I am so glad you brought up the adrenals because I had that. It was awful. I was far too weak to do even simple things around the house let alone exercise. I stopped working and completely rested for nearly a year. I could not get my doctor to take me seriously but thankfully a friend of mine who is an integrative MD suggested the possibility of an adrenal problem. Now I am able to work again and feel so much better. But if I hadn't rested none of that would be happening. You brought up a very good point, thank you.

I have always been one to push myself to the limit. So I had to learn to be a little nicer to myself. And it really helped me. I do feel that the right form of exercise was what helped me get better, but I went slowly and as soon as I felt the least bit nauseous or lightheaded, I stopped and tried later. That even applied to shopping etc. I cannot tell you how many times I went somewhere only to turn around and go back home. That was actually the tricky part; knowing how to read my body's signals--it had been brain dead. Two years later I am much improved. I think my body actually thanked me when I stopped punishing it! So my motto is push a little bit, rest a lot. Rinse and repeat LOL.

This is valuable info and I am not at all surprised. I have had bloodshot eyes as my initial symptom after eating any kind of dye and it took a long time for me to figure it out. Thanks for posting! Why does our food have to have all this crap in it? I already know the answer, just venting. This stuff is slowly killing people IMHO.

I love the photo of Rosy! She is soooo cute. I am still trying to figure out how to post photos LOL.

Thank you! I hope you have a great day as well. We are planning to walk the dogs AND my Amazon parrot in his backpack. He loves it LOL!

I'm so glad you were able to do this. The first time I left the house I was scared to death because I didn't know if I would crash or what. But I made it and it was the beginning of little tiny steps toward feeling better. I am so happy for you Puppylove!

One of the other members on here sees Dr. Shields at Cleveland Clinic and she highly recommends him. Maybe you can find her threads with a search of his name. She had lots of good info to share.

Isn't it nice to get good news once in a while? I am so happy for you. I had a vit D of 40 and started oral D3 2000. Within a few short months I was at 65. So I hope yours comes up fast too. I don't really know if it helped my fatigue because I had soooo many concurrent problems then, but it wouldn't surprise me. I cut down to 1000 recently because I didn't want it to get too high, but probably should be rechecked soon at some point. Nice job on the cholesterol! I love flax seed, it makes a great muffin, too .

Love these. I used to work for a vet who saw reptiles and I learned so much. They are great. Very cool animals and I admire owners who feed and house these guys properly because they really thrive! I don't have any because hubby isn't into it, but I would if I could.

For me it seems to have to do with low blood volume. When I start fillling the tank with salt water, I feel better and my BP increases. That usually takes one or two hours every morning.

Things improved for me when I got too weak to drive and hubby sat in on my doctor appointments. That's when he started to get a clue. Now he is one of my best advocates. But I truly suffered alone for two years before that happened. I was the one who ran the house and managed everything and he was used to it. Let me tell you, it was a big learning curve for him, but it did happen. So there's always hope.