I posted a few months ago about having issues with the doctor I was seeing then. I didn't feel like she really cared about Lyme patients because of the problems I had when I was seeing her. She would tell me that I needed to come in to see her to ask her a simple question when I had just recently seen her in her office. I also heard that one of her Lyme patients went to a scheduled visit and asked to have his labs read, and she told him she couldn't find them so no new information was given to him at the visit but he was still asked to pay for the visit. My main concern was that she was not filling my antibiotics on time. And I get very ill without them. I get very achy and sore and want to just lie in bed a few days off my abx. This happened about four times in the six months that I saw her, and one time I was off my abx for two weeks. She had put my job at risk each time I was without my meds, because of how sick I would feel.
Well, I have found a new doctor, but now I'm having issues with this one. I haven't had much respect for most doctors, but I thought Lyme doctors might be different. They are willing to treat people where other doctors say they have mental problems. I thought they were I passionate, anything but greedy. But not true, I've come to find. This new doctor I'm seeing charged me $200 for our first visit, and $90 for visits thereafter. Expensive, but reasonable compared to SOME Lyme docs out there. He gave me his email and his personal phone number to reach him if I had any concerns. So, I email him about different things regarding the regimen he gave me and with any problems I ran into with getting my meds from the pharmacy. I sent him about four emails in the time since I've seen him which has been about two months, but on the third email he told me he was going to charge me $ 20 each times sent him an email.
I sent him a email telling him that I did not feel comfortable and did not think it was justified to charge me for emails, and if he would prefer I call him to let me know...otherwise I would continue emailing him. On the last email, I let him know that my insurance needed a letter of medical necessity for a med I needed which is diflucan. I said this was normal, and that my last llmd just sent in the letter and I was able to get the med. Now that I've ran out of all the diflucan I've had from the last llmd, this new doctor tells me he will send in the letter of medical necessity to my insurance once he has received $100. I think this is ridiculous, and quite possibly illegal. Please let me know if you know if it is. I left him a voicemail, letting him know that it is obvious that he is looking to get money out of me other than for our visits. I said that I didn't have the money for it, and if that's the case he should have let me know of any additional fees at our first visit. I said that i would hope that he would understand that since many of us lyme patients can't work, we can't afford to be charged outrageous prices. And then I said that I hoped that lastly his priority is to help those that are very I'll rather than making high profits. We all want to make money, but we don't have to be ridiculously greedy. Then I let him know that if he wants to charge me for anything other than visits, I will see another doctor and if not I would see him at our next visit and would like my medication .�
I do not know what to make of these doctors, I want to find a doctor who arent like these.i hope I'm not asking too much. Is anyone else having a problem with docs in mass, or anywhere else. Feel free to pm me about it if you want to use names. I am looking for a good doctor in mass, who isnt like the ones I've mentioned so please pm me with any info on docs too. I am mostly posting this to see if anyone else has had similar experiences though, so please keep this post in this forum. Thanks
Posted by Lymetoo (Member # 743) on :
I know you're angry, but he DID tell you he was now charging for emails. I guess they were taking more time than he expected. I'm sure our doctors can't be answering emails all day.
As for the $200 initial visit.. that is CHEAP.. very cheap!! $90 follow up... also CHEAP!!! Especially for an LLMD .. if he IS one.
My family doctor charges over $100 for a visit.
My suggestion is to pay for the emails, then stop emailing him. Doesn't he have an office number you can call when you need serious help??
Posted by lyme-o (Member # 35115) on :
Wow. Our initial visit was $1100 and every subsequent visit is $225. Plus supplements. Doesn't he have an office? We have to send emails to the office where there is office help that replies after conferring with the LLMD. Something just doesn't sound kosher here.
Posted by katrinab (Member # 30330) on :
I have never had to pay for emails before! And they were questions that should have been answered like " you did not tell me how many times a day to take this antibiotic, can you let me know?". And as for telling me he needed $100 before he sent in the letter of medical necessity, I have never had a doctor charge me for this including llmds, its not my fault that my insurance wants more information as to why I need a med and this should be considered as part of the process of prescribing medications. It seems like these doctors try to charge for anything they can.
Lyme doctors are expensive and that is the point I'm trying to make. First they don't want to deal with insurance which is understandable, but you still have to pay out of pocket for the visit. But second, on top of that some of them are charging 500 and up for one visit. I think 100-200 is reasonable because a regular doctor might charge that much. I don't see why it should be more, but what I am really peeved about is the charges for emails and letters etc. yes the doctor did tell me he would be charging for emails, but he should have told me that at our first visit when he handed me his email. It seems like he just decided on a whim to start charging me.
Posted by Lymetoo (Member # 743) on :
I thought he wanted $100 for the past emails. (making you pay up)
Why can't you call his office for help??
My LLMD didn't even take emails. No doctor would have time to take several emails a day or even a week from his/her MANY patients.
My LLMD had to begin charging for nurses to return calls from his patients because his small office was receiving 150 calls a day for the nurses' help.
You would need about 10 nurses to handle that many return calls.
When he began charging a small fee, the calls went down to a reasonable 30 calls a day.
Posted by katrinab (Member # 30330) on :
Is your Lyme doctor well known? If a doctor is well known they will have many patients and will have to charge more understandably. I don't think my Lyme doctor is well known. He works in a run down building that looks like an apartment duplex and he doesn't have any staff. If he was so busy he would have staff, but he even answers his own phone calls for scheduling and everything. This all makes me think that it is outrageous for him to charge these prices when he's no famous doctor from new York.
Posted by Kudzuslipper (Member # 31915) on :
Katrina, it seems like you don't like your doctor. And you should find a new one. I at first worried about greedy lyme doctors, when it all seems like a crap shoot anyway... But when you start feeling better, or your doctor works you through a hard time you realize their worth. It takes a doctor a few visits to get to know you, get to know what works for you... To get intuition on what may work for you. It takes time to build a repoir. Medicine really isn't a science it is an art.
But if you have been with this doctor for a while and still feel this way ...I would do more research. Unlikely you will find someone as inexpensive, but you may like them better.
Posted by katrinab (Member # 30330) on :
All I really want is to find a doctor who prescribes antibiotics and charges me for the visits. Nothing extra. Yes rapport is good but it's more important that a doctor just do their job, and mine isn't building much rapport with me with these extra charges. The problem I'm running into is that every doctor I've been to except for one is like what I'm describing.
Posted by Lymetoo (Member # 743) on :
If all the doctors have been similar to this one, it's no wonder you are still sick.
Mine is well-known now, wasn't very well known when I began with him.
Posted by katrinab (Member # 30330) on :
I don't see what extra charges here and there have anything to do with whether or not I'll get better or not. I mentioned two docs, only one had a problem with refilling my abx on time. If I had stayed with that doc, I might be much more sick by now yes.
Posted by bcb1200 (Member # 25745) on :
Katrina:
A couple of things (to play devil's advocate.)
First, I believe I know who your first LLMD was (She is an NP whose last name begins with G.) I know 4 people who go to her and all of them rave about her. None have described an experience like the ones you describe. I'm not saying I don't believe you. I do. But what confuses me is why all of the other peolple that I know who go to her have no issues whatsoever. Rx's are filled on time, visits are thorough, etc. I know the office is swamped and they are trying to get a new PA to make it less hectic. Anyway...a datapoint for you there.
Regarding the second LLMD and emails. My new LLMD (a "famous" one) has a published policy for his office stating that brief emails are fine. But if you start sending multiple emails / calls, which require research and time, then you will be charged.
I think this is normal. How many emails are you sending? Is it more than one a month? Obviously, if you are having issues you should call / email.
I think the problem LLMD's have is some patients call / email CONSTANTLY. They are swamped. I know the LLMD's in MA an CT now have waiting lists up of more than 100 people. Patient demand is greater than doctor supply. It is all they can do to meet with us, let alone answer hundreds of emails.
So...just wanted to let you know that. I have heard of some LLMD's wanting to get rid of "high maintenance" patients because they take time away from other patients.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by katrinab: I don't think my Lyme doctor is well known. He works in a run down building that looks like an apartment duplex and he doesn't have any staff. If he was so busy he would have staff, but he even answers his own phone calls for scheduling and everything. This all makes me think that it is outrageous for him to charge these prices when he's no famous doctor from new York.
- This is what I was referring to. Don't you think that if he was a really good LLMD he'd have people flocking to his office?
Posted by WheelWatcher (Member # 34223) on :
This doctor is very cheap compared to most lyme doctors. $90 per followup visit? How long are the followups?
Maybe he is realizing that he cant make ends meet at his current prices, and is having to change his policies. If he doesnt even have someone who can answer the phone for him, he must not be making enough money to pay someone to do it! It really does take a significant amount of time to deal with pharmacies and answer questions about patients with so many complex health issues, i could imagine him being overwhelmed by all these extra time costs, especially if he is new to working on his own with lyme patients.
Other doctors do charge for letters of authorization for insurance. For example, my husbands psychiatrist office charges $100 to do this, each time!
Do you know how long he has been in his current practice?
Posted by katrinab (Member # 30330) on :
Bcb1200- I think it's odd that you haven't heard bad things about this nurse. Yes, her last name begins with g. I am part of a Lyme group local to me and I know people who have gone to her and they are all having issues. Sheis very disorganized. I guess I was a high maintenance patient at one point, only because I was very sick and I got constant yeast infections that came about suddenly despite using antifungals. I also would hound this nurse for my prescriptions if she was late in refilling them, only because I was afraid of losing my job from becoming so ill without them. I suppose it was all understandable since i was one of her sickest patients, but high maintenance nonetheless.
Lymetoo, yes I believe if he was well known he would charge more and hire a secretary but I don't think that means he is a bad doctor. People who have Lyme can be desperAte and want to go to the doctors who have been treating this disease for years. Perhaps he is just starting off treating this disease, I can't say and I certainly am not excusing him. I dont think it takes a genius to treat this disease. Yes, you should be up n the latest research. But I know of a doctor on cape cod who treats Lyme and has for years who uses a very simple regimen that has helped many patients to get better. However, some patients who don't respond have to seek help elsewhere if his regimen does not work.
I am willing to give this guy a shot because I don't want to travel and I can't afford to pay a lot, but I am tired of being treated like a walking wallet by these doctors. Yes, some of the ones I have gone to are cheap compared to the docs in new York but I still feel if I am paying a doctor out of pocket than I should at lest get my prescriptions within a reasonable amount of time, not be blindsided by charges , etc. i certaintly dont want to be treated like a walking wallet.
Posted by shannon12 (Member # 36149) on :
katrinab- I totally agree with you. It took my doctor and his staff 3 months to send me fmla papers for work after I dropped them off. They don't charge me but they just don't respond to me it took me months to get my picc line in. They don't respond because they are not making any money off it because I wasn't going to spend $4000/month in their office getting the iv's. And no if you are sending a reasonable amount of letters and e-mails, your right you should not be charged. And you mentioned you have to go times without your antibiotics, that is absolutely ridicious especially in our situation and the treatment of lyme.
If they would get more aggressive with these insurance companies we as patients would be treated better, insurance would clean up a little and they would hardly have to deal with the insurances at all. Let's not kid ourselves most of the llmd's are NOT in it for the patient, some are but very few. Just because we have a more complex and hard to treat illness, we are being taking advantage of. Yes they take risks of criticism from other medical "professionals", but there are more rewards in it for them.
People have said that they are probably swamped with patients but then I go to the office and see some of the staff playing games on computers and I feel that's what I am to them just a game.
And then people will say oh you only pay $300 a visit that's cheap compared to $1000 or more like Dr. H in NY, I was thinking about seeing him, but why would I want to see a doctor that is supposed to be treating lyme patients and know that insurance does not reimburse for these visits.and still continue to charge this much, this is unethical in my eyes, they wouldn't even be reimbursed that much by insurance if insurance paid for it for the patient in full. Sure doctors deserve money for their time and knowledge, but not everyone can afford that. I am single, no kids and have a good profession and can't afford that. I'm not willing to not eat and be homeless for no guarantee that your even going to get better even by seeing the top llmd's. So maybe $300 or less per visit is not so cheap for some people.
Now my new insurance blue cross denied my iv's, so I would be paying $600/month for iv's and supplies,$300 for oral meds and 1000 for a doctor's visit? and now I'm supposed to do ivig shots at 280/every two weeks, so I guess I just won't eat anymore. yeah well good for the people that are lucky enough to see these doc's, but even if I had the money, I would never want to see a doc that charges so much.
So now I appealed my insurance decision verbally and spoke with my doctor's office today (been off iv's now for two weeks, and told them I need a medical necessity letter for the appeal, I said do you think it can be done by the end of this week, she tells me if I get to it. And there is a number my doctor can call directly to get it expedited and actually talk to the doctors that set these cdc guidelines on treatment, do you think he's going to do that? why not do you know how much that would help me and other patients? but no because again there is no money in it for him. And they want to charge you $100 for a generic pre written letter of medical necessity. Totally ridiculous, people don't want to admit it but most of the llmd's are greedy, that's the bottom line.
So this will probably go on for months and months, I only call my office when absolutely nessary, in the meantime I'll just get sicker and sicker and more suicidal, and who cares? not the llmd and their staff
Any good llmd knows that along with treating lyme patients comes major insurance issues, and believe me they make their money or they wouldn't be treating it. Sure their swamped have a lot of patients, my office is only open mon-thurs, I"m a nurse work 50+ hours/week and shove my dinner down my throat in 5 min. w/full blown lyme disease. I work 11+ hours a day.
And for all the lyme "assistant programs" all I'm asking for is help with iv rocephin but I don't qualify because I'm single and make over 20,000/year by killing and dragging myself through work everyday, getting rushed out to the hospital and passing out at work. And then your supposed to add immune enhancers, supplements, parasitic treatments, more $1000's of dollars, so again everyone lucky enough to receive all this treatment great for you.
[ 07-31-2012, 02:36 AM: Message edited by: shannon12 ]
Posted by undiagnosed22 (Member # 28152) on :
Many insurances do reimburse for Dr. H. I know mine does and I know of several people who see him and get reimbursed as well.
Posted by Hoops123 (Member # 18333) on :
Undiagnosed - do you know if United Healthcare is one of those insurance companies that does reimburse for Dr. H, and if so, how much of the fee do they consider reasonable.
Posted by Lymetoo (Member # 743) on :
Check your own insurance plans. My ins reimbursed me from 60-80% of my LLMD's charges. That is because my ins pays for out of network doctors.
SEE "TF's" REPLY ON THE ABOVE LINK. PERFECT EXPLANATION!!!
--
If you know anything about supply and demand, that may help explain too. I do NOT think LLMD's are greedy. (though I have heard of a few who ARE!)
Posted by undiagnosed22 (Member # 28152) on :
Hoops, I am not sure about that. I have BCBS and I get reimbursed 80 percent. I dont know anyone who sees him who has united but you should ask. I know that the paperwork you have to fill out, at least for BCBS to reimburse, literally takes 5 minutes or less - quick and painless! So def call and ask y our insurance!
Posted by katrinab (Member # 30330) on :
So insurance can reimburse, and llmds dont take insurance because they don't want to deal with insurance companies who say they are not following the standard treatment for Lyme disease, but it seems a lot of these doctors are charging a lot for visits. Sure, some of them spend a lot of time during the first visit. But after the first visit these doctors should not be charging over two hundred dollars, that is ridiculous. They should charge just as much as any other doctor out there who doesn't take insurance. Since there are so many Lyme patie ts out there, they should charge even less because they would make money even with charging less since there is so many of us. Paying hundreds of dollars upfront is not possible for some people, especially those who cannot work from this disease.
Posted by Lymetoo (Member # 743) on :
If you have insurance, ask your company how much they pay for an out of network doctor.
My doctor took ins at first... later did not. I still got reimbursed. I just had to do the filing myself. As "undiagnosed" said, it's very simple.
Posted by undiagnosed22 (Member # 28152) on :
Even after the first visit, these doctors ( at least speaking the me I see) spends WAY longer with me than any doctor who takes insurance. I know that when I go to a doc who takes ins,the time slots are usually 15 minutes. I usually spend an hour with my llmd. I agree they are very expensive,but if you take a look at your statements,regular docs charge an arm and a leg too,but insurance pays. I agree though that it is very hard for people without insurance or who can't work and that is not acceptable....but I think IDSA is to blame.
Posted by undiagnosed22 (Member # 28152) on :
** the one I see
Posted by Lymetoo (Member # 743) on :
Yes, the IDSA is to blame!! absolutely!!
You are right... Some regular Drs charge $100 for maximum of 15 min in time.
(I'm being generous. Most spend only 10 min)
So that is $400 an hour.
The LLMD I used to see now charges $500 for first visit. He spends 1 1/2 hrs with his patients. If he was just a PCP, that would cost $600. (at the $100 rate)
His follow ups are $275 .. 45 minutes. A regular Dr would cost $300.
Posted by AuntyLynn (Member # 35938) on :
Katrinab -
I can understand being upset if a doc did not call in prescriptions on time. That's wholly justifiable anger in my opinion.
But four emails in two months, and your new doc informs you there will be a $20 fee - that is NOT unreasonable. His time is valuable.
If you had a question about drug dosage (which should have been clearly written on the prescription, and on the druggist's LABEL), you should have called the druggist, or the office, which would have generated no charge.
Most folks struggle, in one way or another, with the cost of treating TBDs, and it would seem that you have found a practioner who is extremely reasonable in his charges.
What should count most for you is whether you are getting results from the treatment. Any extra "hand holding" can rightly be expected to come at an extra price.
Posted by sammy (Member # 13952) on :
Shannon, it sounds like you think that your doctor is not trying to help you.
Maybe you should schedule regular appts to talk with them to make sure that you get everything that you need.
With the IV antibiotics, even when your doctor submits that letter of medical necessity and calls to talk directly with a "peer physician review", there is not guarantee that anything will be approved. Or even considered.
Insurance companies hold strongly to their medical policies, request yours to see exactly what it is for Lyme treatment. They also follow IDSA guidelines. You know this.
I spent 2yrs appealing with lawyers and a team of doctors including my neurologist and top LLMD fighting to get IV antibiotics covered. I have documented obvious objective neurological symptoms and continued positive western blot tests but that is not enough evidence because 4wks was my ins policy.
My doctor's office fought for me. They are incredibly busy but they took the time to send piles of research studies and letters when I needed them. Because this extra work takes time for the doctors and staff to complete, I did have to pay extra to have it done. I was told what the fees were going to be in advance. I felt that this was fair.
I personally don't think that our LLMD's are greedy. They are the ones fighting for us. They actually care about us and want us to get better.
Posted by shannon12 (Member # 36149) on :
what happened was I had aetna and my work switched as of July 1st. Aetna paid for everything 100%. I now have blue cross horizon of NJ, and that's when I started falling apart. They're even giving me a hard time with my oral antibiotics because they're higher than normal doses so I need a separate letter for each med and the copay's doubled. And now I owe a local pharmacy thousands for the month of iv's in July. Then I had blood work done at Quest lab(at my doc's office) and they are telling me it's out of network, when they told me at the lab they accept this insurance. So now I owe for that again thousands. I will be homeless pretty soon.
My insurance policy is they pay for 4 wks of iv's but they won't pay for even the month of July. And I know that my appeals and even if the doctor calls they're still going to deny it. But I need to at least try and think my doc should still give it a try, it's a matter of me giving up my place i've been in for 8 years.
I know they work hard and have a lot of insurance issues to work on, but they really really take too long for my issues. Three months for FMLA papers is not right. I just feel there should be someone in the office specifically for insurance issues, we pay enough to see them. I never call them, bother them, and I would be in the office at least once a month if I could afford it. When I'm there I try to ask about everything I can , but new issues come up all the time. It took my months to get my picc line in, all they had to do was set my up in a hospital near the office that my doctor had privilges at, which they ended up doing months and months later because they wanted me to say I'll give up my life and come down to their office 4 x's a week and pay their prices.
You mentioned your doc's office fighting for you, that's the thing mine does not they don't even give me the option of paying they just don't respond to my requests. Your office sent piles of letters, mine barely filled out an FMLA form for me? I just think I have legitimate complaints.
And no I'm not too happy with my doctor, there are things I like about him, but he the same LLMD that tested my for lyme in 2007 and it came back negative, and I was diagnosed with "fibro", I think he should have listened to more of my symptoms. I wouldn't be near death right now. I'm near suicide but won't check myself in anywhere because I'm afraid of not getting my medicine, when I was hospitalized in the winter with heart related lyme they refused to give me any of my meds. And in the psych hospital also didn't give me my antibiotics.
Right now I'm mad at the world, I can't even stand myself right now, I just want to crawl in a hole and die. I can't go on disability because you have to be out of work for 6 months yet I can barely make it through work, I don't know if I should just go off treatment or stay on orals , not go back on the iv's, get ivig shots, I cannot afford all of this. I've been sick for so long there is no more fight in me, I have no quality of life, absolutely nothing to live for , no children, no significant other, can't visit my family because I am too sick, can't barely talk on the phone because I am so sensitive to noise. It's pathetic
I'm just kind of stuck, I know another LLMD will take months to get an appointment with , I don't know if it's worth paying for the iv's out of pocket, if I do I can't afford a more expensive LLMD. All my monthly costs add up to way more than I make right now, all I want is help with the iv's, told the insurance I do them myself, so no home health nurse. I just don't know what people do , take out personal loans?
Posted by sammy (Member # 13952) on :
Shannon, I'm so sorry to hear all that you are going through.
Sadly, I can relate to your story more than you can imagine. Even our profession is the same...
We are blessed though because we are capable of caring for ourselves. Even though it is difficult at times we have the knowledge and skills that others do not have.
One way to try to save money is to get generic Rocephin in the vials from your local pharmacy, have them run it through your regular RX plan. Sometimes they will cover 7, 14, 28 days and you have to get refills. If they do it this way, all you have to pay is a copay every 7, 14, or 28 days. Have your pharmacist keep running the script until it is covered.
If that doesn't work, have them search to see what the cheapest generic is for cash price. When I had to pay out of pocket, I used Hospira. It's been a couple years but it was under $300 for one month.
Then all you would have to do is buy the small vials of sterile water to reconstitute and syringes with needles. If you wanted to go way cheap you could talk with Infuserve about administering it via IV push and go way slowly. Then you would not need to by bags of saline or tubing.
Also, if you buy your medicine and supplies through infuserve they can submit the forms to your insurance company for reimbursement. Often even if your ins co says that they will not pay, they will still reimburse at least part of the cost. It really depends on the company and the plan. United healthcare did not reimburse one penny, BCBS did (after denying IV beyond 4wks).
If you need something done by your doctor's office and you have already called and emailed asking for it, try sending them a card or a note of Thanks. This may trigger their memory and motivate them to help you faster.
Take care, I really hope that you get the medicine that you need.
Posted by shannon12 (Member # 36149) on :
sammy-thanks for your kind words and info. I'm going to go back on the iv's starting tomorrow, continue w/the current local pharmacy, they come in premixed syringes for 25 a dose, so about 125/wk, but yeah that's how i've been doing it the pushes all along, that doesn't include any supplies, I was lucky enough to have someone give me flushes and dressing change supplies. I guess I can't get much cheaper than that. It isn't that expensive but just when you add up all my other meds and doc visit's it's just unreal. Do you think if I did the vials and reconstitued it I can get it cheaper? I did call infuse america and it's the same price as what my local pharmacy is.
The other day I left a message with my doc office and told them I need the letter sent or I need the doctor to call me , in a nice way, I got an email the next day with the letter they sent.
BTW: how long were you on iv's and are you better now? how much do you think the iv's helped? thanks