Sibling doubts LLMD's diagnosis

Hello everyone,

I know that some of us have family and or friends who do not understand Lyme and who are not interested in learning about it because of busy lives, interpersonal issues, or many other reasons. With all the medical issues and typically a long road to getting diagnosis and treatment this does not help matters - I am being nice about this but it does make me angry.

My sibling decided to see my LLMD and have a work up done to rule out auto-immune and she if she had lyme. She was diagnosed 4 years ago by Dr. R in New York City and took Mepron and Biaxin for 6 months and felt better but just decided to stop going. My LLMD did testing and told her that based on clinical symptoms and 3 positive bands (sister cannot remember what they are) to start antibiotics. Npw my sister prefers wholistic approaches so I gave her Dr. Zhangs contact information and told her that many people do both and then when finished with antibiotics continue with Dr. Zhang to clean up.

OK - so what is the point? While she was visiting over New Years I asked her if she had started her medications and she very bitingly said that she was told by a woman that my doctor gives everyone a positive diagnosis so she had not filled the prescriptions and wasn't sure if she would because she wondered if my LLMD was a sham.

I am someone who has been through hell and back with this thing - it changed my life since 1995 and I have gotten so much better in the last year and a half with very aggressive treatment from this doctor (multiple combinations of IV antibiotics). Her comment hit me like a ton of bricks and made me feel as if the last year and a half of being really sick was some how questioned by her and my other siblings. (It is our family dynamics and I can handle my sibling because that is who she is and has always been and it is also possible the Lyme has affected her mentally. I remained calm and told her that it was her decision.)

This is a well known physician in New Jersey who has been treating lyme and co-infections for a long time and treats some very bad cases and who also can be very abrupt. If it is true that everyone comes out with a positive diagnosis the only answer I can come up with is that by the time the patient sees the doctor they have been to so many others and suspect that they have lyme and have found this doctor through recommendation and referral.

Any thoughts, comments? This was very upsetting to me. Do any of you run in to this situation? My insurance company paid for many months of IV treatment without question and I think they would have denied treatment if they could have found a reason.

Thank you,
bcaring

Bcaring: You and I have talked before and I feel your pain. I have two sibings, both older brothers that I do not hear from since I have been in Tx for treatment. I think the hardest part of being ill, no matter what the disease is, is the fact that it truly allienates us from the ones we love the most. I have thought about this alot and what I have come up with is that our condition frightens them because they dont know how to help. If your sister has seen the suffering you have gone through, she is most likely in denial, probably out of fear. You need to take of yourself and not spend alot of energy on what others think. I know that sounds simple but in my experience with all of this, its energy that we need to get well,  and not worry about others perception of us. We cant change the way anyone else sees it, we only know what we feel. I hope for her that she gets treated and my best to you as well.   D

hi bcaring! While I was reading your post, Dowa wrote you those wise sentences. I do completely agree with her: concentrate on yourself; let the others think what they assume is right. I know (by myself like you do) that this is hard if it is family; it took me a while to get along with it, but I learned that there are others out there, who will feel with you, listen to you, try to support you, believe in you and the treatment you have choosen and pray for you that you will get better soon. And this is real !!!
My best wishes to you, Bcaring! And also good luck for your sibling.

Dowa and Dorit,

Thanks for the thoughtful responses. I am ok now. I just read Dr. Burrescano's 2008 treatment guidelines and it reminded me of what I have been dealing with and that I have been on the right track.

Dowa - are you getting any better? I have noticed you make an effort to respond to many on the forum and I thank you for that.

Dorit - how are you progressing? I think I told you that I spent 3 months in East Africa in 1972 and several weeks in North Africa. It was one of the most fascinating and exciting times in my life. I was young and fearless (sometimes unwisely) and went to areas that would be impossible to visit today.

What a beautiful continent and it is heartbreaking what is happening in some areas.

Take care ladies,
bcaring

Bcaring: I wish I could say I was getting better. I dont have a LLMD here so I come to the forum to learn!  And I am learning alot and really it helps me to figure out which of my symptoms are Lyme by all the posts here. As you know, I was also injured from toxic mold and the symptoms are almost identical. So this forum is very helpful to me and I like to be helpful to others also if I can.. Hope you are doing well   D