Wilma Jenks Posted May 11, 2011 Report Posted May 11, 2011 Ok...day three on steroid burst. Already she has broken 2 pairs of my glasses. She is screaming that she does not want to get old. This is something that she has complained about since she could talk, but it is coming back big time since starting the burst. I emailed the doctor, but I like 2 bounce it off of you guys too. I really don't want to stop this burst. I feel like I don't have many more things to try. She is really agressive with me. She is trying to stick my finger up the dogs rectum. Sorry, but I need to be completely honest. She get super odd symptoms.
mama2alex Posted May 11, 2011 Report Posted May 11, 2011 I'm so sorry you are going through this! When we first tried a 5-day steroid burst with our ds9, he got worse and by day 3 was starting to "hear things." We stopped at that point and a couple of days later started to see significant improvement. We think the steroids did their job, but while he was taking them he was having side-effects. The improvement did not last however - 1 1/2 weeks later he caught a virus and we were back to square one. Have you resolved your questions about Lyme yet? It may make sense to see a different Lyme doc, if the one you saw will only diagnose based on testing. A good LLMD will look at everything that could be affecting her - Lyme, coinfections, mold, viruses, strep, allergies, parasites, vitamin deficiencies, heavy metals, etc. They will be able to diagnose her pretty well based on both symptoms and testing. Then they can treat her with medications/herbals/supplements based on their assesment. At the point, her response to treatment will give the doctor a better idea of what's going on as well. This seems like a safer route to me than steroids and IVIG without really knowing what infections/issues she's dealing with - especially since she is SO sensitive.
Guest pandas16 Posted May 11, 2011 Report Posted May 11, 2011 If you already have Cunninghams Test done indicating a high level of antineuronal antibodies and a high cam kinase score, plus Dr. B has offered you IVIG- why don't you pursue it?
Wilma Jenks Posted May 11, 2011 Author Report Posted May 11, 2011 We are headed for IVIG. We are waiting on blood tests. Dr. B. said do steroids in the meantime since the OCD was around the clock and severe. Dr. B. said bring her to the E.R. room, but she is starting to calm down.
Wilma Jenks Posted May 11, 2011 Author Report Posted May 11, 2011 I'm so sorry you are going through this! When we first tried a 5-day steroid burst with our ds9, he got worse and by day 3 was starting to "hear things." We stopped at that point and a couple of days later started to see significant improvement. We think the steroids did their job, but while he was taking them he was having side-effects. The improvement did not last however - 1 1/2 weeks later he caught a virus and we were back to square one. Have you resolved your questions about Lyme yet? It may make sense to see a different Lyme doc, if the one you saw will only diagnose based on testing. A good LLMD will look at everything that could be affecting her - Lyme, coinfections, mold, viruses, strep, allergies, parasites, vitamin deficiencies, heavy metals, etc. They will be able to diagnose her pretty well based on both symptoms and testing. Then they can treat her with medications/herbals/supplements based on their assesment. At the point, her response to treatment will give the doctor a better idea of what's going on as well. This seems like a safer route to me than steroids and IVIG without really knowing what infections/issues she's dealing with - especially since she is SO sensitive.
Wilma Jenks Posted May 11, 2011 Author Report Posted May 11, 2011 I did testing for mold, viruses, allergies, parasited, vitamin deficiencies and heavy metals. I have been around the country to non traditional doctors, western doctors etc... My next step is to get on the nightly news to yell my story out to the world 2 see if anyone can help. You just watch me. I don't embarrass easily, so I will do something really bizzarr to get everyones attention. There has to be an answer out there!!!!
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