Hi--I was diagnosed a few months ago after having Lyme for almost 2 years. Does anyone have doctor recommendations in NYC? All I had was my primary doctor who diagnosed me and no one else. I feel despondent like I can't live life like this...my eyes and mouth are unbearable. I was looking at Restasis but there doesn't seem to be good reviews. And my mouth has no taste. I have no desire for food and am deteriorating. Any advice would be appreciated. Thanks.
Welcome. You can have a long life with an auto immune disease. Symptoms may come and go to varying degrees depending on how well you manage. I thought my life was over but it was not. To understand good days and bad please read "Spoon Theory".
I use supplements as you can see in my signature. Please check for interactions, counter indications, and side effects before trying any drug or supplement.
I also use meditation, reflexology, Reiki and tones.
Life is a journey. Good luck. It still can be filled with joy.
I think your best bet would be to see an immunologist who could do a lot of blood work to find out just what is going on. It doesn't do any good to have a diagnosis when you haven't been referred to a spedialist who could help you with treatment and more testing to see what else, if anything is going on.
Lyme disease can have a lot of symptoms and you need someone to help you with your journey. Also, I don't know where you are getting information on Restasis, but I have been on it for 10 years and have not had any problems. Many people are on it for dryness caused by inflammation.
The main thing that can occur is the burning that occurs when you first start using it. Your eye doctor should be ordering a prednisone drop for a week or two to take the edge off the inflammation so that the burning from the Restasis isn't as bad. The burning is because your eyes are dry and irritated. Also, storing the Restais in the frig works well as the coolness of the drops helps to diffuse the burning that can occur. Let us know how things are going for you. Irish
I saw in your other post that you have been diagnosed with lupus and Sjogren's. Sorry to hear your symptoms are getting you down. That's pretty common, so a lot of people here can relate.
When I lived in NYC, I liked my rheumatologist, Dr. Chung Tseng, who is associated with NYU Hospital for Joint Diseases. She and her office staff were very understanding and helpful. Also, the Sjogren's Syndrome Foundation website has a list of support groups. You can contact a support group leader and inquire about which doctors the members prefer. http://www.sjogrens.org/home/get-connected/support-groups/us-support-groups/newyork
I have been on Restasis for a few weeks now. The first time I tried it, it seemed to make my eyes dryer so I stopped using it. My opthalmologist told me to try again. After talking to opth, reading reviews and getting suggestion from this forum, I found the following has been working well: (1) keep Restasis in the refrigerator; (2) apply lubricating drops about 5 minutes before Restasis so eyes are moist; (3) apply lubricating drops 5 minutes after using Restasis to take away sting (opth said that is fine). When reading reviews, keep in mind that sometimes they skew towards the negative as people with complaints are more likely to post. Also, for some people the drops can take a few months before getting results so maybe reviewers didn't give the med enough time to work. If your eyes are that uncomfortable, it's worth a try. Restasis also has a co-pay assistance / discount card you can get online or maybe from your opth. In the meantime, look into over-the-counter eye drops (I prefer Refresh Optive or Plus) and eye gel (Genteal eye gel drops is good for me) that are preservative free. Some people also use ointment at night.
For your mouth, a doctor can prescribe Evoxac, a pill that helps your mouth produce saliva. In the meantime, you can get relief by sipping water often, chewing sugarless gum, getting xyli melts and using Biotene or ACT mouthwash for dry mouth, and Biotene mouth spray.
Here is a thread about additional helpful items you can find at a drug store: https://sjogrensworld.org/index.php?topic=10139.0
I'm not knowledgeable about Lyme Disease, so I have nothing specific to offer you on that topic.
Good luck and keep us posted about how you are doing. I hope you find relief soon.