songcanary

I am taking 4.5mg at bedtime for fibromyalgia. It has been a godsend. My doctor said to look for increased energy and decreased pain. That is exactly what happened. But it hasn't made any difference in my dysautonomia, although I have never been dx'd autoimmune. I do get it prescribed by an MD. I started at 4.5 and had no problems at all. I think it likes me LOL.

The day I started drinking salt water I was washing walls within two hours. It was a revelation. But I still had symptoms and subsequently had a positive TTT. I have have a couple set backs since then, but over all I've seen slow improvement. So enjoy the ride and I agree with the other comments. Just don't be too disappointed if you fall back temporarily. This illness can be very cruel with its ups and downs.

This is interesting. I am so glad you have some results to pursue. Plus, having help relatively nearby to boot! What a relief this must be for you. Take special care.

Christy,

Thank you so much. I am sitting here in the house with a wool coat on. I am literally freezing just like the old days! This and the nausea were my worst symptoms before starting doxepin. You are right about the 'ain't broke' theory. Who knew?

I do hope your son feels better very soon.

Marsha

Well, I stopped doxepin 25mg to prepare for some additional testing at CC. So I tried staying off it because I really need more food allergy testing and I need to be off it for six (!) weeks in advance.

In the last several days I have started to get the sweats and chills, and the nausea is back along with the malaise. I was so unsteady today I fell down. My BP and pulse are perfectly normal. It started when I reacted really badly to pork with severe nausea and I haven't recovered well. That was about six days ago. I can usually tolerate a small serving of pork.

My question is: Has anyone else tried to d/c doxepin and got sick again? I was feeling really well before I stopped it, but I think I may have learned a hard lesson here lol. I am just trying to function on as few meds as possible.

Julie,

You are ordering Culturelle? They sell it at my local Target. And it's reasonable. I think it's about 18 bucks. Love the stuff!

My husband is the one who noticed this, believe it or not. My bad symptoms began three years before menopause. But like some others, I had dysautonomia symptoms my whole life but they were intermittent and didn't affect my quality of life until recently. I think hormones are strong little buggers and I didn't realize it until now. I am getting better slowly. Every day I cross my fingers.

I agree with Dizzy. I saw a dietician and it was a complete and total waste of my time and money. She was absolutely clueless about food allergies and honestly, I knew much more than she did in many areas because I had been doing so much research. I should say something nice--they are great at calculating calories if that's what you need LOL.

I found help online from several sites after googling 'multiple food allergies'. A good integrative doc is a great suggestion as well.

My doctor prescribed 0.05 mg every other day and it is working well. I am very prone to yeast and haven't had any problems at all.

Believe it or not, there is a way to make a bed with a patient in it, I did this many times when I did hospice care. This is the same idea only without the patient! Make the bed from the side. After removing all the old bedding, put half the bottom sheet on lengthwise and kind of scrunch the other half up in the middle. Then continue the same with your other sheet and blankets. Go to the other side, unscrunch and finish. Does that make sense? Sometimes my descriptions aren't all that hot LOL.

We are all used to going round and round the bed to make it, but this way eliminates many steps. I've been where you are now. But we all love clean sheets, right? It's so comforting. Your grandson sounds delightful and so does your hubby .

I don't know about the MG, but I can't tolerate any more than 5mg Ambien. The 10mg works super but puts me in a coma for the next day! I don't take it every night because I don't want to become dependent. But it does help, even though I wish I could take the 10mg--I know I would sleep better.

Gosh, I have never kept mine in the fridge, and there are no labels on the bottle saying to do so. Were you initially told to do that?

In my case the FT3 was diagnostic. TSH was always normal. I had all your daughter's symptoms plus losing gobs of hair.

Way cool. Thank you!

Exactly, Lieze. I can usually 'talk myself down' but yesterday I just didn't do a very good job!

Thank you both so much . It really helps to hear others' experiences. I am really freaked out about this because I had been doing pretty well. So here come the ups and downs again I guess. Tomorrow I have a QSART and heart rate variability test at CC so I will tell the nurse about the anxiety and maybe the doctor can suggest something. I am trying to keep the med list short but what are ya gonna do??

Hi all,

Today we drove about 1 1/2 hrs to visit some wonderful relatives. I have been wanting to see them for so long. But I had so much anxiety about going, and plus we went to a restaurant with them and I could barely eat part of a baked potato and a little salad. I actually felt a little nauseous right after eating just THAT. I was hungry but with my food allergies I was afraid to eat anything else anyway. They know I've been ill and completely understood, but I am wondering if I need something for this anxiety. I come from a long line of nervous people and have been fighting taking meds for it.

I was wondering if I should ask my doctor about this. Does anybody else have these feelings of anxiety at being away from home, and have any certain drugs helped with that? I don't want to live the rest of my life neglecting my friends and relatives, I love them all and miss them. I tried Cymbalta a while back (for fibro) but had nausea so bad I stopped it after four days.

Temps normally dip at night. Mine is routinely in the 95s when I go to bed. What you are looking for is a steady daytime temp. Try to take your temps at the same time every day and that will give you a better idea of what is normal for you. I wish I had your day times of 97 or 99! Mine struggles to get that high .

Before diagnosis, I had mid day temps ranging anywhere from 94.0 to 97.0, they were very erratic. Now I average around 97.5.

Hi Derekliz,

When I was first diagnosed with ferritin deficiency I did not have an iron panel done so I don't know the other values. Subsequent panels were done after I was eating red meat and taking supplements and of course they were perfectly WNL. I wish I could give you more info, I know how you feel!

Alyssa,

Your understanding of the dog is awesome. I greatly admire you. It sounds like you two are a great team.

Mine is high as well. I'm thin with low BP too. Before I got diagnosed I had every symptom of Addison's except the skin changes but my cortisol was off the charts. It was a crazy combo. I don't know where it is now, need to recheck at some point.

Three years before diagnosis, my ferritin was 30. I was very symptomatic with lots of hair loss and horrible fatigue. I was taking three hour naps which didn't even help. It came up fast with oral supplements. It got as high as 300 but last check it was in the low 100s. The head of dermatology research at CC told me that a ferritin less than 70 in a female will cause symptoms. She said all the lab values need to be reassessed because they're too low.

If it were me, I'd try this: Open your heart and mind and tell your PCP that there has been a big misunderstanding and could you please start over. He might be relieved! I only say this because you like this doctor and would like to stay on as a patient.

Try to summarize your important concerns and present them concisely. Then maybe the two of you could advocate as a team instead of butting heads. It would at least be worth a try and just might be helpful. Good luck!

Lotusflower,

I take drops that my allergist custom mixes. He is a wonderful young guy who practices in a holistic fashion, although he is an MD. He has patients who drive from many hours away just to get tested! I feel so lucky he is nearby.

I would be living on bananas and potatoes if it weren't for these drops. I take them first thing in the morning every day. I just hope someday I won't need to do this anymore, but for now it's all I've got!