Forum Replies Created
May 6, 2019 at 1:16 pm #464222
That’s great news! Paying for Lyme treatment can be very expensive and is one more burden when you are ill.
ParisaApril 9, 2019 at 3:38 pm #464051
Wonderful to hear your progress 🙂
ParisaApril 6, 2019 at 6:09 pm #464044
So happy to hear your daughter continues to do well.
ParisaMarch 4, 2019 at 1:10 pm #463860
Great news! It’s always hard when we lose experience doctors.February 28, 2019 at 10:06 am #463840
I remember your daughter was a little further along in treatment when I first started reading your posts. Reading about her progress encouraged me to keep pushing to get the right treatment for my husband.February 26, 2019 at 1:08 pm #463833
So glad to hear that another DM patient has been able to recover. Perhaps, like me, they don’t want to post too soon and then as time goes by it becomes harder to do.
ParisaFebruary 25, 2019 at 8:04 pm #463820
A myositis diagnosis can help you qualify for IVig which was very helpful for my husband. Keep that in your back pocket if you ever need it.
ParisaFebruary 25, 2019 at 8:01 pm #463819
It was posts like this that kept me going during the darkest moments. I hope this post will help others who are struggling.
ParisaJuly 28, 2012 at 2:16 am #363953
When my husband first became sick, he saw an AP doctor who wanted him to go on Cytoxan and unfortunately did not start him on oral antibiotics. After about a year into the disease we put two and two together and figured out that he had Lyme disease. We saw a Lyme disease specialist and he started out on oral antibiotics. The oral antibiotics were not enough for him as his disease had spiraled to a point where he was just getting worse and worse (although the oral antibiotics did help to stop thep progression in his lungs). After about a year of orals, he switched to IV antibiotics and to IVIg. That was the winning combination for him and after several months his condition started to improve by leaps and bounds. It completely surprised the rheumatologist who had prescribed the IVIg and assured us it wouldn’t work without methotrexate or some other form of immune suppression. My husband had already tried Cytoxan with no results (he finally stopped refusing the Cytoxan as he was afraid of what was happening in his lungs) and prednisone which had given him some relief in the beginning of the disease (superman energy!) but later on lead to pneumonia, cataracts, osteopenia…..We always felt that if he had received oral antibiotics in the begining of the disease and not put on the steroids and immune suppressing drugs that his recovery might have been alot easier.
Eva, another DM sufferer, has done quite well with oral antibiotics and LDN (Low dose naltrexone) so IVs aren’t always necessary.July 27, 2012 at 5:11 am #363923
Welcome to the RoadBack. There definitely is hope for you. Lupus can be difficult but can be treated. I think the important thing is to discover what medications you can and cannot take and Lupies tend to have more sensitivities. There is some testing that can be done to find whether you have issues with certain metabolic pathways. I don’t have the info at my fingertips but I know there have been some posts in the past regarding testing that can be done at Great Smokies Lab (now Genova Diagnostics)July 27, 2012 at 2:20 am #363956
Unfortunately, dermatomyositis isn’t as common as some of the other autoimmune conditions, so you might not get too many responses. My husband did not treat with Dr. S so I can’t impart any experience regarding him but I can tell you that my husband has recovered from a very serious case of DM with pulmonary fibrosis and has been in remisison for several years now. It is possible to recover from this disease!July 26, 2012 at 12:26 am #364093
Glad your meeting with Dr. F went well! I can understand your husband’s concerns about your veins but I would also weigh the benefit of a strong attack against the scleroderma. As you improve, your veins should also improve too. Perhaps, you could try a series of the IVs and see how you do on them. If they don’t work out, you could do oral.July 7, 2012 at 8:59 pm #362129
I’m glad to hear your last injection went well and that you continue to make progress.July 6, 2012 at 11:07 pm #364157
I will take Sean’s comments with a grain of salt since I see he’s never posted here before. Seems to me he may be connected somehow to the product.July 6, 2012 at 2:51 am #364170
I’ve found when it just sits there not loading after I hit submit that if I hit the stop (red “x”) and then hit submit it loads right up.