To tell or not to tell....

You are very thoughtful to think of this and you make a very good point about protecting your dr. I hadn't thought of that. Though my GP (for the meantime) does think it a possiblity that I have lyme she kept asking who I was going to see. So I told her the name of the ID dr.(whom she recognized and said was very good) and didn't tell her the name of the LLMD that I was going to see a week after....glad you brought this up.

Funny how they didn't notice you were out of a wheelchair - what a bunch of losers.

Oh, I tell them all. And many times they begin making the suggestion that I am being over medicated or that I no longer need the meds because I have been on them for so long. I put a very stern look in my eyes, with the most brilliant smile and I remind them of how they misdiagnosed me so many times, how others misdiagnosed me, and that for the first time in years, i am finally driving again, seizure free for the first time in 17 years, and no longer treating for so many syptoms that I have, because I am finally finally fighting the disease. I make it very clear why I am at their office and kindly ask them to treat me for that, and if they become a lyme specialist, than I would be more than happy to listen to some of their suggestions. I tell them that I have many documents and articles that discuss lyme (nearly a book's worth) and if they decide to read it all, then we can discuss my lyme strategies.. Otherwise, please stick to their specialties. Because I certainly wouldn't see a neurologist for a heart condition. I say it all very kindly, but also matter-of-factly. Don't be disheartened over other people's stupidity, lack of knowledge, or ignorance. You know that you are doing what is best for you, and have your LLMD on your side. That's the important thing.

My daughter, on the other hand, who was 15 at the time when her pediatrician told her that she no longer needed meds for lyme when she was in there to get a strep test, flat out told her off! lol. She reminded the doctor that she told her that my daughter was lying about all the symptoms for attention or it was all in her head. She named all the problems that lyme gave her (a list of over 100 things), how they are resolving, and asked her again if she thought she was lying. Then she told her "you didn't know what I had back then and you don't know what's going on now. So stick to your job and just give me the strep test." I wasn't there with her that day because I was bedridden from the lyme at that time, but my mother was, and she just laughed. We can learn a lot from these kids of ours. She wasn''t afraid to speak her mind and take a stand for her health. Good for her!

Btw... I never reveal my LLmd's name to these other doctors.

Sam...Thank you soo much for your response! I needed to hear it and it has given me the strength to look them straight in the eye and tell them like it is in a polite way. I pray for you and your daughters recovery! God Bless

My current GP knows I'm seeing that Dr, but I haven't seen him since my diagnosis with Bart. He says he doesn't know enough about the matter to judge, but he doesn't do any research/reading about it either. He doesn't know I'm getting treated with antibiotics right now.

The only other Dr I'm seeing (after being to at least 11 other Drs) is my oncologist from before, be he doesn't know about the fact I'm seeing a Dr who's trying to put together all the symptoms and came to Bartonella as a result. I don't think I'll tell him my current Dr's name, he never took my 15 year extreme fatigue serious, so why would I share with him? I'm sure he's gonna insist on me coming for checkups more frequently, but he doesn't know I get constant checkups

Funny you bring this up. I've debated for months on what to do. I am honest about my meds with any doctor who will be prescribing meds. I think that's important but I do get hassled. I do tell docs I have lyme. Often times I get stories from them or the nurses about how another patient came in with a picc line or how they have a family member or friend who was so sick they had to stop working for 2 years before getting better. Let me say that I do live in upstate NY where our area was declared an lyme epidemic area this past year but chronic lyme is not recognized so I live the chronic term out unless I get a sense they understand what I'm talking about.

As for sharing your docs name, I shared my experiences with other docs during my recent LLMD visit. He told me flat out that I can give those docs his contact info and he'd be glad to explain to them his experiences with 1000s of patients and how he approaches his treatment protocol. So I'd check with your LLMD to see what they think. Good luck. Ultimately you have to do what you feel comfortable with. For me I felt like I've battled with these docs for sooo long that now I have the right diagnosis behind me I now feel like the fighting is easier and I don't mind it as much. I like to get up on my soap box!

I would recommend not telling your rheumy to save yourself the hassle. If you're like me, you've been through so much w/ Drs. already, why make it even more difficult on yourself w/ a Dr. you see regularly. As far as giving your LLMDs name out, you are smart not to. If you do decide to tell your rheumy about the Lyme, there's no reason that you have to give her your LLMDs name. T

Also, the one thing I have noticed, the only Drs. that have been kind to me and not mistreated me have been the female Drs. All of my really bad experiences have been w/ male Drs. So, maybe your rheumy would surprise you??

Hey Lymer,

Thanks for reading my posts, and I'm happy you enjoy them! I have had all sorts of reactions from my doctors, from fear, to shock. Never has one gotten angry, although they usually begin to feel rather inferior. And maybe there is a little bit of resentment there on my behalf. lol. The key, I think< is to stay adamant and never let them see that you can be swayed or budged. They take advange on what they think we don't know. But if they see you are strong and unswerving, they don't even try.

One of the funniest incidents was with my endocrinologist. He was so adamant that I had a tumor on my pituitary gland. He was ready to plan the surgery without even having an MRI yet. He said he had never seen thyroid and adrenal results like mine that it had to be a tumor. I told him to investigate Lyme and he would see that it was all too common. I told him what implications Lyme has on the endocrine system,and brought him reading material from very reputable sources. He wasn't havent any of it though. But as I started going through the tests I wanted done, how I wanted them, and when, he looked at me and asked if I was the doctor. Needless to say, I called all over CT (thats where I live) to find an endo with Lyme experience and found nothing! Are you kidding me?? I did the MRI and returned, he granted me some of the tests, and realized that I had already called what my results would be and what they wouldn't and he was astonished.. However, he failed to read any of the material I left him and said he found no information that lyme affects the endocrine system. I knew he was lying. So I stood up and said that I didn't have time for a doctor who could not accept his own ephemerality. Nor was I going to deal with someone who thought they were so perfect that they had nothing more to learn in life. I called him sad, ignorant and conceited. And then I pointed out to him that I called all the tests that he eventually ordered because he didnt know what else to do, and yet I told him all the things I didn't have that he was so certain I did. He was ashamed and embarressed and he sunk his head and looked down at the floor. He knew I was right. But I wasn't standing up for myself at that moment, it was all his other patients that he may have treated that way. The guy never asked me my symptoms or listened to a thing I had to say until I pointed out what a horrible doctor he was. ANd how many patients go in there and don't know anything about any condition they have. He needed to be put in his place and he said that he would go over the literature I had left him and he wouldn't let me down. I told him not to bother, ignorance didn't fit into my schedule and neither did a bogus brain surgery. And I got up and left. Did I belittle him? yes. But I didn't say anything that wasn't true. And maybe he did bear the brunt of what was built up from a lot of other doctors to. But what if that moment of humiliation caused him to listen to at least just one patient?? Then it was all worth it.. And if it didn't, well, at least I made him feel worthless.. lol. Sorry, have to laugh.

As for my daughter, her pedi said not a word to her. She wrote up whatever she did in her chart, and left the room. The nurse came in and stuck the swab down my daughters throat. She came back a few minutes later and handed her a script for strep. They left the office and my mother said thank-you and have a nice day. My daughter smiled because she knew she had strep and she got what she went for. I still laugh, even as I write that story... a 14 yr old girl telling off her pedi, and being right about it.

Oh, and the doctors reaction everytime I remind them how many times they misdiagnosed me...silence, silence everytime.

I wanted to follow up and say...it did not go well and I am FRUSTRATED. Having a not so good day and will post the details once I feel better.

ok..just so everyone knows, Thanks to O care all records are now connected, the doctor knew I was on three antibiotics. I defended Lyme and did not give her the name of my main LLMD although when she gets records from other drs she will know I omitted it. I was trying to protect him, he is wonderful and given the others doctors harrassing me about my treatment, I fear he will be turned in as GA doesn't believe lyme exists here. I told her I was getting better but she was unamused. I should have told her when she asked my the name of the other drs, I should have politely refused and said I want a fresh prospective with the opinions of other drs. I was angry with myself that I let me get to me!

Also, when she asked all my dx's I told her psorasis, and Psoriatic Arthritis from 2 other drs, she said she didn't think I had it and asked me to she a dermatologist to confirm. I was pissed and do not think I will because my co-pay went from $25 to $40 per specialist visit and I do not want my skin treated. I told her I only wanted her to address my severe joint pain which is excrutiating!!! I have never heard a rhuemy not knowing how to dx psorasis. She is suppose to be a great dr but I am very unimpressed.

She hounded me about getting a mammogram. I told her I got one at 40 and talked to my gyno about skipping one at 41 but would get one this year. She insisted I tell her the name of my gyno that told me that. My close friend began getting them before 40 and a year ago she died from breast cancer at 55. She told me she thought all the mammograms could have contributed to it as she had no family history. So I felt until I am a little older I would do them every other year. I guess it is not the patient choice anymore! She did a breast exam which I was not comfortable with as I just had one from my gyno 2 months prior. Guess she was being thourough but felt she did everything but what I went there for.

She asked me if I had been dx with sarcoidosis. I said a dr had mentioned it but no dx. So not knowing about it asked her about it and she didn't want to discuss it with me...***reak!!!

As you can see I am still frustrated with this situation. If I were not still soo sick and mainly bed ridden. I would move to MS and see my LLMD for everything as he is the best and smartest dr I have ever been too. He is NOT arrogant and the kindest and most gentle hearted man I have EVER met. He has prayed with me with I was at my breaking point before the doxy began to work on my head symptoms. My parents are taking care of me now but when they are gone, I will move...no second thoughts!

Thanks for listening to my rant! :)

Marie..thank you for contributing! I just don't have a good feeling that the medical industry as a whole has our best interest at heart. It is a money making machine...the more specialist they send you to...the more tests they run...etc Don't even get me started on vaccines....

Losing my dear friend Jaye was bad enough..now my best friend of 43 just had breast cancer and had surgery in Dec. What is going on...why are sooo many getting sick sooo young? Am I the only one questioning this???

Hey beachlover,
I'm sorry your dr appt didn't go as well as you wanted it to. It's tough whe we get so sick, because really we just want someone to help us rather than harp on us for what we should or shouldn't be doing. I have never gone to see a rheumy. Is it common that they do a breast exam?