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Post by nhnancy on Mar 25, 2014 23:19:30 GMT -5
Hi everyone,
Stopping by to say hello and touch base. I cut back on the Minocycline to once a day on March 1st, and noticed my face is tightening again, my
my hubby says he can see it also..So I started back on it yesterday. I am doing smoothies again and invested in a Vitamix blender (bout 400.00)
I just love it! The machine is amazing!
I still feel very fatigued, and have to pave myself, I have a sciatic nerve that pinches nearly everyday that I am on my feet too much, so
I go to the chiro to adjust the alignment, but as usual...the Docs don't. offer much hope and I steer my own boat. I haven't been to a rhuemy
for a while.. Most don't want me to do AP. as you know.
My hands and feet are REALLY skinny and boney, with little padding left. ...
I remain determined though, I believe I am doing the right thing.
One question for you, how much probiotics do you take and when/how do you take them? One of the reasons I tried to cut back on Mino. was becuz of diarrhea.
I am sorry if my typeface is really large to you, but the forum changes have made it really difficult for my ipad mini.
love to u all! , Nancy in wintery NH :-) 
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Post by jeffn on Mar 26, 2014 19:39:27 GMT -5
Nancy I have been taking three or four probiotics with lunch every day. Fortunately I have not had much in the way of gastro issues with the SD of mino. What dosage mino are you taking now? At least you know the mino is helping. I have reduced but have been on the 100mg twice a day a lot longer than you before I started dropping dosage. Everybody is different. I never did go back to Beth Israel after Dr.T left. My new rheumy comes to the island monthly and is OK with mino, for now I'm good in that regard.
I do the chiro thing too and I think it helps some. I hope you get some energy back and your feet and hands get better. You still have a good attitude and that is probably the best medicine. It is hard to maintain sometimes but being positive and strong is a large part of fighting this (or any) disease. Hang in there. A bit of nice weather will help all our outlooks too. It has been a looong winter huh.
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Post by isobelle44 on Mar 26, 2014 20:48:57 GMT -5
Hi Nancy, I hope you can find a rheumy that ok's mino. My one doctor said for some it helps and for others it doesn't. She let me try it for a time but when she didn't notice any difference with me she wouldn't renew. That's really good you can notice difference, like Jeff said at least you know its helping. It really has been a long winter.
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Post by nhnancy on Mar 26, 2014 22:42:13 GMT -5
yes, jeff and isobelle, the Mino is helping me, though there are other things,
I am taking 100mg twice a day and will remain on it and battle the gastro affects with probiotics. I will bump up my dosage of probiotics, I am wimpy about taking pills...lol and have a tendency not to take enough. when i was on once a day the gastro stuff calmed down so i know its a flora thing!
I have a Rheumy here a town away, she doesn't have much experience (young). ...The doc at Beth Israel never took me off of them but didn't really agree and suggested back a year ago that I cut back. My GP will order PFTs and echo when I need them, she has three patients (locally). with SD, at least one also on mino. she has seen/witnessed the improvement and is filling my scripts.
I will keep on, keeping on...another improvement. is that I can sing again...sounds crazy, but I used to love to sing with my fav music and couldn't, as was told that all
that acid reflux damaged my vocal cords and that they were pitted forever ( I had a very cracky voice) , but nope, I recently began belting out a tune along with JohnDenver and can almost whistle again. :-)
I have been very proactive with hand and facial exercises, and my raymauds has been tolerable,I didnt use half as many hand warmers aslast year.
I do take b complex vitamins for neuropathy in my feet...thats better, too!
I am currently taking 100 mino 2x a day, nexium twice daily, 5 mg lisinopril (BP med). B complex vitamins, 2000 mg vitamin D. (vitamins in afternoon away from Mino). really trying to eat way less food with additives, etc...thats hard cuz I enjoy food! :-)
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Post by jeffn on Mar 27, 2014 18:49:22 GMT -5
Lots of good news in there Nancy. I have noticed that every winter I have less Raynaud's attacks, my fingers still get cold and all that but I don't get the "dead guy white" fingers nearly so often as previously. Having a source for the mino is critical. The singing is great news. I can sort of whistle too. I knew my esophageal problems were getting somewhat better when I began to burp again. Yeah really. All of a sudden one day I burped and realized I had not done that in ages. You are improving and that wonderful news. It took a while for my feet to get less painful but they did. Now I can cruise around the house, on the boat and in the yard barefoot in the summer.
Keep up the good work.
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Post by nhnancy on Mar 29, 2014 13:08:13 GMT -5
Hooray, Jeff....great to hear bout your bare footin...gives me hope! :-)
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Post by grammie on May 4, 2014 20:00:17 GMT -5
HI there,. I take probiotics (one of my doctors says it is too much but I continue with it for she said it wouldn't hurt me any) and have made sure they are of good quality with no fillers.
You mentioned neuropothy. I have been able to get acupressure treatments and it has helped me a lot. The burning is gone most of the time. I do have a bumpy roller that I roll my feet on at night which has helped to stimulate the feet and does help. Also putting the spongy foam things that are used for pedicures between my toes for a half hour is also helpful. You might think about these ideas. It has helped me.
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