I went to Germany last week to see an Infectious Disease dr and Endocrinologist at a big military hospital. I am currently seeing a LLMD here in the UK, but my insurance/GP wanted me to get a second opinion from these dr.s. I'm trying to come home (US) for treatment and the military will pay for my flight home and medical expenses if it is medically necessary and I can't get proper treatment here. Anyways, I told the Endo about my hypoglycemic "like" attacks and she thinks I have adrenal fatigue/insufficiency and tested my AM fasting cortisol, had a shot of coritsol and then hour later blood drawn again. I haven't got my results back yet. She also believes I have a form of hypoglycemia and prescibed me a glcose meter to check my blood levels. The infectious disease dr was better than I anticipated. He was very thorogh and spent about an hour and a half with me. He DOES believe that I have lyme disease and didn't disregard my Igenex labs. He knows about the controversy of lyme treatment and straight out told me hes in the middle. He doesn't totally agree with the IDSA guidelines, but he said he also isn't in full agreement with ILADS and the use of long term antibiotics. I ended up having a spinal tap done for a lyme PCR and to look for MS. He told me that if it is POS for lyme it is for sure lyme, but if it is NEG it really doen't mean I don't have lyme. He also tested me for Babesia and Enricha (sp?), parasites, heavy metals, toxoplasmosis, and a few other things I think. He was very nice and helpful. He suggests I Stop all oral antibiotics and have IV Rocephin. He wants me to have a PICC line put in to make it easier. He said I could go back to Germany and he would treat me there, get it done here if possible, or send me home where I could get home health to do it. So I'm going to do the IV. If I don't improve on that then I think I'll continue the orals. I have been off my orals for about 3 weeks now. The first week after stopping I felt GREAT. But now I'm feeling crummy again. Should've known it was too good to be true. Anyways do you all think the IV is a good idea? Do you think this dr is good?
Thanks.
Posted by kareamber (Member # 20110) on :
Anyone?
Posted by whimsy (Member # 24351) on :
Well, I'm a newbie to this journey with my daughter. However, my inexperienced opinion is that this dr doesn't think you are crazy, understands that lyme results can easily be false negative, and he's willing to treat. It also sounds as though he may be open to treatments he wouldn't otherwise use (long term abx), if you can show a reasonable reason that you want to try it (or continue).
As long as you are comfortable with him, I would continue as his patient, in whatever country you are able to. I guess ideally Germany if that is where he is located. I'm just not sure what your residence status is (sounds like military spouse or family).
Hope this little bit helps.
Posted by sixgoofykids (Member # 11141) on :
Might be worth giving him a try. At least he admits to being in the middle, which will mean he will treat as he sees fit. Hard call to make. Go with your instinct.
Posted by n.northernlights (Member # 17934) on :
There are many doctors in Germany who are member sof some kind of ILADS-associated group.
We have heard from patients who went there to a clinic in augsburg, b-c-a, and got IV rocephin and that seem to be the standard approach.
Posted by lymewreck36 (Member # 4395) on :
Yes, I have visited the clinic in ausberg. Here are some observations....they will give you more treatment than anyone else in the area....
They are very proud of NOT using the "harsh" antibiotics the americans use...and have used biaxin to treat the cystic form!!!!
I asked them if they would put me on a detox program, as they have a detox clinic on the premises, and they discussed my case and said it would be better if I detox when I "FINISH" my treatment plan.
Well...guess what folks...no sign of being able to be off my treatment plan, so I guess they won't detox me.
Otherwise, a very friendly place, clean, all doctors compassionate and likable.
For where I live, it is pretty good. But would not choose that over an american ilads doc.
mary
Posted by kareamber (Member # 20110) on :
This wasn't a german doctor. It was an American Infectious Disease dr. He works at a US military hospital there. He isn't a member of ILADS. But I did like him and I thought he was good. He does not agree with long term oral antibiotics, but does say I NEED IV Rocephin. He wants me to do 30 days and see how that goes. He said it will help A LOT. Atleast he is willing to say I need IV. So that helps. I will get the iv and then go from there. If he isn't willing to keep treating after that I will continue seeing my LLMD that treats long term with oral.
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