Posted 1/30/2013 6:50 PM (GMT -7)
Great, glad you found the Iowa doctor! I would hate to tell anyone what to do regarding their health, but I doubt very much they will do much for you at Gundersen. I have no idea what difference it would possibly make if it was in your blood or your spine, if you have LD you have it in your body and you want it gone. I think if it was me, I would call them again and ask what difference it would make and how they would treat it, whether it was in your blood or your spine. Also ask them how they treat LD that still has symptoms beyond their (10, 21 or 30 day) treatment and be sure to ask how long they would treat. I have a feeling they will tell you any lingering symptoms are what you are stuck with or will go away on their own over time. Yes, they may go away on their own, but they will come back with a vengeance (personal experience speaking). Be firm on getting answers and go with your gut instinct. Your frustration with doctors has been described in some form by pretty much everyone here on the forum. It is such a confusing, frustrating situation to be in and you are not alone by any means! I also saw a neurologist at one point because of severe dizziness, along with many, many other symptoms that all came on at the same time or just kept adding on. Do you know what he determined my problem was? He said my brain suddenly quit knowing how to distinguish patterns quickly (along with all of the other symptoms that my gp said were certainly all separate issues because all of these symptoms do not go together for any illness that she knew of) and he wanted me to briskly turn my head from side to side with my eyes open to retrain my brain, along with taking a prescription for something I most certainly did not have! My gp, who was NO help whatsoever, was angry at me for not trying the medication "just to see if it would work." Oh boy, I'm getting angry all over again and it has been over 7 years ago!
Again, I would strongly recommend reading the book and watching the video I mentioned. If you have Netflix, I believe you can still rent the movie there. It REALLY helps to understand why main stream medicine is doing what they are - basically nothing for us.
This summer my daughter was bit by a tick. I kept the tick and the next day got her in to see a PA. The PA said she would give a ONE DAY preventive prescription for antibiotics. I told her I have/had LD and one day of Doxy will do nothing, it has to be at least 3 or 4 weeks for a new bite. She looked at the dead tick in the baggie and said this tick does not have Lyme Disease (and it was a deer tick). I told her I wanted it sent in to the lab to be tested. She said how about 21 days of doxy, and I said that would be great. They really have no idea how to treat Lyme, unfortunately.
I would also STRONGLY recommend getting copies of all of your medical records on your Lyme journey. If you have never done this before, you will be shocked at all of the mistakes/incorrect information in them.
Again, good luck!