I have to be honest, I am very frustrated about the Lyme Doctor I have been seeing. Before I went, I read nothing but glowing accounts about him, so I felt truly lucky to live only a few hours from this man. After 15 years of being sick, and getting a Lyme diagnosis this last year, we were thrilled to get in to see a Lyme Doc, let alone one with such high praises. We thought, "we have a diagnosis at last and a doctor to see, too, now we will make progress." Unfortunately, my experience seems to be the opposite of what everyone else posts. My husband and I went together since 2 heads are better than one--and I am glad he did. This doctor threw so much information at us that we were dizzy from it all. Both my husband and I consider ourselves of normal or above intelligence, and in the past 15 years we have been seeing numerous doctors, there has never been one that has seemed to confuse us or talk in such circles. We left thinking after we read the huge stack of papers he sent with us, it would all be clearer. Instead, we found a lot of his print material to be as confusing as he wasósome of the pages contradicted other of his pages. The doctor had written out some prescriptions but the amount of pills did not add up to the length of time he wanted me to be on the medication. We were shocked to find that after calling his office to get this corrected (into the way he wanted it) we were charged to make this correction. We had already spent a huge amount for that first office visit, and considering the doctor didnít get the amount correct, we didnít understand why there was a charge for this. Quite frankly we were shocked there was a charge for this at all. We had out next visit with this doctor, hoping it would be better. This one was over the phone. We were almost blown away by the hundreds of dollars we were charged for this. Again the doctor was confusing, contradicting things he had written in all the papers he had sent home from our first visit. He also promised to send in prescriptions for new medications he wanted me to be on. Unfortunately, he didnít send all the prescriptions he said he would, and on the ones he did send, he didnít include full instructions for dosage. Of course we called his office to get the full instructions and ask for the prescriptions he had promised to send but didnít. We are now being charged for that as well. I know it costs a lot to see a doctor. But I do not understand a doctor who charges every time a prescription refill is given, or one that charges the patient when the doctor leaves something out. I am just amazed and so is my husband. We are feeling really fleeced and donít understand how this is happening when so many others post such glowing accounts about this man.
After reading your post, I'm not sure it's a matter of liking this doc or not. He sounds unethical, period. No doctor with a pure intention of helping long suffering Lyme patients would charge so much for things like correcting a script. Boy that just makes my blood boil. Where is this doctor located?
I live in the Kansas City area. I'm curious to hear which dr you went to. Perhaps I can recommend another one. Sorry to hear of all your problems with this doctor. I agree that you have reason to be upset.
I really hate to give the doctorís name. Despite my frustration I am still a patient of this doctor and probably will be for the foreseeable future. I'm praying that things improve as we continue to work with him. I know I have to do something. I am on a waiting list to see another doctor and am really holding out hope that that will go better. Unfortunately, the other dr. has a one year waiting list so I feel like I just have to stay with this one in the meantime. I thought I had been sick the previous 13 years (I had to start a wheelchair in 2003), but these last two years have found me with a whole new bunch of symptoms that have developed. I have just been so much worse that most of the time I can barely function. So I really feel like my back is against the wall and NEED this current doctor for the help I might get from him. I truly feel like I am at the end of the list of anywhere else to turn for medical help and without at least some, I couldnít hold on until I see the one year waiting list doc. We are willing to do or pay what it takes to get some help (our 15 year story is a testament to that)Ö.I am frustrated about the current situation. Like the rest of you, this is an expensive nightmare (we have emptied my husbandís retirement money on things we have done over the years and maxed out credit.)
I have begged my regular GP for help with the Lyme, and she has just stonewalled me. She originally gave me a two week prescription for antibiotic. When I told her that I really didnít think that was enough to get rid of Lyme she told me that was what all the literature states is needed. She told me I would have to find a different doctor if I wanted more treatment than the two week prescription. I even begged my long term allergist (11 years of seeing him) for help. He didnít want to touch Lyme with a 10 foot pole.
Ticker, you asked, ďWere you tested for the co-infections ticks can transmit: Babesiosis, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? Many people who have Lyme are co-infected. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.Ē
I actually had my original Lyme test through my GP. It was my idea to get tested and she almost laughed me out of her office. After much persistence on my part, she agreed to a test and acted sheepish when it came back very positive. Thatís when I got the two weeks of antibiotics. I took a copy of this test to the current Lyme doctor. He told me he could tell I had confections, too.
Just to make the mix more interesting, our personal live is full of issues: our oldest child is in college and struggling with issues (his attitude toward us has also gone south which is shocking since we have been close) he also has had years of bad health, so are suspecting he has Lyme, too. Our youngest is a daugher being bullied in grade school by two other girls--one a former best friend. She also struggles with her health. My Dad developed rapid moving Parkinson's along with sudden blindness while he already had hearing loss. My 84 year old Mom is attempting to take care of him by herself, at home, and it is draining her. Dad falls often and brings Mom down with him. Mom has to take care of all his basic needs. I am an only child and should be there helping but am stuck in a wheelchair, or worse yet, in bed for great lengths of time. Just life in middle America I guess.
Sorry to hear of your troubles..I jsut want to say DON'T GIVE UP !..You've made it this far---keep fighting, researching, ask around on this board--it's an incredible resource of information--There must be others in your area with Lyme..find out who they use, or their meds and tell your doc, or go to theirs....There are answers out there...don't give up on finding them..Like I mentioned--This board is a great tool--use it often !
I wish you all the best...........Doug