quote:

---

Originally posted by merrygirl:

Most appointments from regular docs are $125-$300 for an hour around here.

---

But how much is an appt. with a specialist?
 

---

Posted by merrygirl (Member # 12041) on :
 
See I am in the same boat. I am broke as a joke. I havent worked in a year and I have spent all of my savings in 1 year,


When you see a real LLMD you will understand why it is worth it.

I think I had the same post as you in the beginning.

After screwing around with people that take insurance I realized that to get the best I had to pay.

We are on the same side!!

This dease sucks the life and MONEY out of you.
 

---

Posted by UnexpectedIlls (Member # 15144) on :
 
Maybe I should take out the word "greedy" ....it was in anger

I UNDERSTAND that lyme doctors are risking A LOT. I did NOT write this to make Lyme doctors sound like the BAD guys. The doctor I went to was very nice and spent a little over an hour with me. I thought for what I paid it should have been longer. That is my only beef. I did not spend 900$ I spent the last 625$ I had in the bank.

I have seen that other docs charge 900$....

I am simply saying that it costs WAY too much to be sick and this goes for ANY illness.

Since this is a LYME board it is being directed at Lyme costs and doctors charges,

I am not trying to make enemies here I am just speaking freely about the absurd amount of money it costs to get treatment, and that goes for anything. (illness/specialist)
 

---

Posted by merrygirl (Member # 12041) on :
 
My ID doc (specialist)1 hour appt was about $300. He is good and worth it by the way..
 

---

Posted by sixgoofykids (Member # 11141) on :
 
It DOES cost an absurd amount of money to be sick! That I do agree with!!!

It also angers me that I have to not only pay for my LLMD to keep my insurance company from finding out I have Lyme (they can stop paying for scripts for any reason according to my contract), but I also have to pay for plane fare, rental car, and hotel, not to mention eating out for a couple days just to get to my appt.

So, in the end, it costs me about two grand each visit! All because the medical field won't acknowledge chronic Lyme.

Now, that is something to be mad about! Our insurance should cover this!

BTW, your last dime was well-spent!
 

---

Posted by UnexpectedIlls (Member # 15144) on :
 
Your right Six, My anger is probably pointed in the WRONG direction.

Thats what usually happens though....the finger gets pointed at the wrong person and here I am guilty if it.

My anger and frustration got the best of me.

I cannot believe you have to pay that much for an appointment.....

I know I am seeing a good doc, but I have to remind myself of that. I am still not in a place of trust.

And please rememeber I'm new to the Lyme scene. I ahve been through all the crappy tretment from previous docs and that has left a bad taste in my mouth.
 

---

Posted by sixgoofykids (Member # 11141) on :
 
Fortunately, most of my appts. are phone consults because I do have to travel and my LLMD is sensitive to how much it is costing me.

My regular appts. are closer to $300 .... it was the initial appt. that was so expensive. And the phone consults are less than half that. But, yeah, when I travel up there, it's the $300 plus all the travel expenses! The first one was as expensive as I mentioned .... now they still cost that because I have to take my daughter up there with me (she has it too).

I know what you mean about not trusting docs .... I have thought they were idiots since I was a young child because none of them believed me. When I grew up I realized they weren't idiots, just ignorant and unbelieving.
 

---

Posted by jagb09 (Member # 14713) on :
 
The cost is ridiculous, I agree.

I don't blame the LLMD's though, I blame the corrupt insurance companies that make it so hard for everyone, including the doctors.

The problem is a majority of ins companies will not pay for anything that is not absolutely necessary or proven to be so.


Since our LLMD's kind of treat differently then the recommendations by the CDC, the insurance companies can easily argue that we are seeking unnecessary treatment.


Then, you have to fight tooth and nail from both ends ( the patient and doctor) to get anything paid and really the insurance companies, if they pay anything at all, only pay about 1/4 of the cost.


Ultimately the doctors lose out, have to take more clients to make up the cost which makes us suffer b/c then they have no time for us.


The answer? Legislation, legislation, legislation.


We need to get out there and make our legislators aware of how real Lyme is and how badly we suffer and how much our insurance companies don't help.


Maybe then, things will change, doubtful, but maybe.


True story about insurance companies:


My mother is a breast cancer survivor, 6 years out with only 1 scare since.


She had a very aggressive form of breast cancer and is therefore higher risk for relapse.


She gets her mammograms, etc but, recent research has shown that breast MRI's in conjunction with mammograms can detect breast changes that may indicate cancer about 70% better then just mammograms alone.


So, I told her to ask her dr. about getting an MRI too. Her dr. agreed but the insurance company denied it.


The reason? They said my mother was not "at high enough risk to warrant an MRI".


What?!


So, having already had breast cancer is not high enough risk? What is then?


Insurance companies are pains in the butt and are unfair.


They are ok if you are healthy and only visit the dr once a year but in our case, not so much.


It depresses me, really.
 

---

Posted by ralph (Member # 9189) on :
 
Yikes ! $900 initial ?

Since I cannot prescribe drugs and use only natural treatment, should I only charge $600 ?

At that rate, I could see only 4 patients per week and then go fishing the rest of the time !

Sounds like a plan to me !
 

---

Posted by cantgiveupyet (Member # 8165) on :
 
I agree with this, and frankly dont care if someone attacks the heck out of me for saying it.

I just dont give a c$$$ anymore!!!!!

What i have issue with is how Doctors can opt out of medicare/medicaid. Not jut LLMD but other dr too. I dont feel this is right at all and shouldnt be legal, especially for those who are disabled.

But that is a whole other topic.

Ive gone to many LLMD, thankfully most while I still got some reimbursement from my insurance company. The recent LLMD i saw was 900 and I left in tears from being beaten down. They pushed supplements I could not afford and knew my bladder couldnt tolerate.

A few appts later I was asked what abx usually help me :-( So, i have no guidance once again.

I was practically forced to see another dr that the llmd 'recomended' that also doesnt take insurance, cash/check only. I could go on and on about this, but wont. I have spent close to 3,000 in two months and now cant afford to attend my own brothers wedding :-(

I have three opened supplement bottles where I took one or two pills

I know my health is a priority, but i dont feel the more expensive LLMD was worth anymore than the low fee LLMD's I have seen. Just my opinion of course. I also might add I have gotten worse taking supplements to the point that my bladder is a wreck now, probably did damage :-(

Also, I saw one dr in NY last year(non llmd), and while most NY dr dont take insurance; this dr atleast took credit card, so I just put it on there and paid it when my insurance reimbursed me.

If I had to do it all over again from the start, I would have seen a dr in NY, one of the best and might have been well by now :-(
 

---

Posted by roro (Member # 13383) on :
 
i guess I am really lucky. my initial was about 350 and the rest are 135.

i went to an out of network neurologist, and he charges 600 for the initial and 250 for the rest. I fully understand why he charges so much for the initial, as he must have spent HOURS going over my shopping bag full of medical records.

any out-of-network specialists that dont take insurance charge more. seeing that in-network doctors spend about 5 minutes with you and charge 100, I feel its a bargain.

I am only going to go to out-of-network doctors from now on.
 

---

Posted by sunshinyday (Member # 14337) on :
 
I think $900 is a little bit much.

I feel sorry you had to spend that much. The Drs I called were all between $25o amd $375.

I'm sorry your so sick.

Gail
 

---

Posted by hcconn22 (Member # 5263) on :
 
I can understand, but do the math.

A LLMD will spend 1 hour with you on a first appt, most doc's spend 5 minutes and charge you $150.

Most LLMD spend a lot more time per patient than other Dr's and cant take insurance due to the hassles, denials for care etc.

Malpractice insurance is VERY expensive possibly $250K+++ a year.

If you have insurance just be glad if your meds are paid for....

And they deserve to make a good living, although most are not rich by any means compared to other Dr's.
 

---

Posted by Beverly (Member # 1271) on :
 
My son had to see a pediatric cardiologist and it was about 500.00 for the visit and this is in MI.
Why was it 500? Because of the same reasons that hcconn22 listed. The cardiologist had to spend about an hour with my son. He was not LL

The biggest difference for me and most of us lymies is Insurance. The PC was paid by my insurance.

And I pointed this out to my insurance as a comparison when I submitted my last hour appointment with my LLMD. (by the way was cheaper than the PC)And they actually paid more because I sent them a very long letter explaining to them that my doctor was a specialist and needed to spend about an hour with me.

The one thing I cannot get covered is phone consults, because insurance companies need to change and grow with the times. Maybe with what the CT AG has done it will help us eventually? I sure hope so.

In MI for a regular doctor appointment, it can cost anywhere from 70.00-90.00 and that is for 15 mins. My LLMD charges 200.00 for 30 mins, so that is about right considering he is in New York.

Then, like hcconn22 said you have to add in the cost of their higher insurance premiums, treating patients out of state, and the cost of being put under investigation etc.

I think we all get frustrated, but it's mostly with how we get treated by insurance companies and the rest of the medical world. We are forced to travel and go to such lengths to find help and it shouldn't be this way.
 

---

Posted by Aniek (Member # 5374) on :
 
When you pay a doctor, you are not just paying the doctor's salaries. Besides earning enough to make a living, doctors have to pay for:

Liability insurance
Rent
Salaries and benefits of all of their staff
Equipment
Administrative expenses

My LLMD charges $150 for an appointment. A first appointment may be $300 because she spends more time with you at that appointment (she was in my insurance network when I first started so I don't know).

The LLMDs who charge more for a first appointment generally spend 2 or more hours with the patient at the first appointment. Some LLMDs think this is vital to proper diagnosis and treatment. If you cannot afford this, there are LLMDs who spend less time with patients.

Most primary care physicians charge $100-$150 for 15 minutes. If a doctor spends 2 hours with a patient, that would be $800 - $1200 based on those charges.

I understand that it is extremely difficult for patients to pay these charges. Unfortunately, there is a certain cost to doing business that doctors need to meet.
 

---

Posted by Dawnee (Member # 15089) on :
 
I agree with you. I am sick and will probably not be able to afford treatment. I have insurance...but we already pay 500 a month for THAT and THEY won't pay for Lyme treatment past a few weeks.
Now coming to realize that all three of my children and my husband could be infected. Then there is absolutely no way we will be able to afford all of us to have treatment. It's just not possible with our income, only one person able to work.
The only thing that MAY give us a chance is if our LLMD is willing to take minimum payments...LONG term. And thats not likely.
In the same boat as you... just saying I know how you feel.
 

---

Posted by Lymetoo (Member # 743) on :
 
I still say their rates are cheaper than regular ducks. I think however, that $900 is too high.

My LLMD charges around $300 an hour and about $450 for the first appointment, which is usually an hour to 1 1/2 hrs long.

My GP charges about $65 for 10 minutes. So that's about $390 an hour.

It's all about the same.
 

---

Posted by perplexed (Member # 1913) on :
 
Time now for my two cents...

I am on a low fixed income and will probably never receive the proper care for my Lyme Disease because of the reasons pointed out in this discussion. You cannot bleed blood from a rock..I just do not have any resources to get help except for my Medicare Advantage plan, which most all LLMDs will not accept.

I can understand the frustrations and concern as I am living them also. I am now experiencing heart problems from this Lyme Disease..cardiologist blames Lyme disease, but he cannot treat it. I am legally blind in my right eye because of Lyme Disease..opthomologist blames Lyme Disease but he cannot treat it. I suffer from Lyme Arthritis and bipolar, depression and mood disorders. Doctors blame Lyme Disease but cannot treat it. And the list goes on.

I have just given up on the treatment end of Lyme and take one illness at a time..like one day at a time. It is grueling, exhausting and darn right not fair.

Hugs,

Perplexed
 

---

Posted by Tracy9 (Member # 7521) on :
 
Another option is to find a good, open minded, insurance accepting Primary care Physician who will prescribe the treatment recommended by an LLMD. I know ours will.

That way you can consult once with an LLMD, or bring in the Burrascano guidelines, and get your treatment covered by insurance.

Also, in citing the costs of LLMDs, people are not taking into consideration the cost of living in different parts of the country. An LLMD may charge $200 or $900, but comparatively rent in those cities could be $500 and $1200 for the same apartment, respectively.

It's all relative.

I live in an area where things are expensive. My LLMD charges $625 for an initial hour visit, and $300 for a 30 minute follow up.

My PCP's office charges $250 for a physical, which may be 20 minutes or a half hour at the most. Seems pretty comparable to me.

A specialist around here certainly charges far more than my LLMD does.

I get really frustrated and angry when people bash LLMDs for earning a living, especially so since the LLMD this thread was started in regards to is MY wonderful LLMD.

He is the most unpretentious, down to earth guy you will ever meet. He CLEARLY is not GREEDY, as I understand he was called in the original post.

He wears worn jeans to work, has a simple office building, and his mother is his receptionist.

He recently went on a cruise with his mother for her 75th birthday, and it was his first vacation of ANY kind in 8 years.

He paints his own house, and my husband fixed the broken heater in his office after six months of seeing it broken.

In fact, it infuriates me to hear people complain about his/other LLMDs charges.

These physicians are putting themselves in front of the FIRING SQUAD to help us. They are risking all their years of training, educational loans many of them are probably still paying, reputations, and livlihood to help us because THEY BELIEVE IN CHRONIC LYME DISEASE.

They are watching their colleagues like Dr Jones and Dr Jemsek go down. Yet still, they continue to treat us.

They can't work with insurance companies, who may black ball them, report them, or at the very least refuse to pay them.

They risk their reputations to help us.

Who the hell are we to complain that we may be asked to pay them to do so???? What gives us the right to judge them for making a living just like anybody else?

I've done the math. I know my LLMD, one of the more expensive ones, does not make ANY more money, and most probably LESS, than any other doctor or specialist in our geographical area.

Yet he writes, speaks, and publishes about Lyme disease for free. He put himself completely on the line to testify at the Dr Jones trial, extensively, before the very same medical board that licenses him.

He deserves every penny of what he charges. I would never think for a second that he does not have a right to charge me for my appointments, or that he doesn't deserve to be paid.

With any disease, people can seek out specialists and alternative treatments at their own expense. They don't have to. Many people here pay for infrared saunas, countless supplements, hyperbaric oxygen therapy, and more without complaining about the fact that they have to pay for it.

I am sorry for people who can't access an LLMD. Believe me when I say, no one is broker than I am, as I sit here right now freezing in my house next to my stinky little boy because we have run out of oil yet again and cannot afford more; therefore we have no heat or hot water. I know it is May first, but it is damned cold here in Connecticut tonight.

Nothing will stop me from getting my medical care. I do not have a credit card, I have no money or savings, I have nothing. I am selling things on Ebay and begging from family to pay for my appts when I need to.

I go every couple of months. That's $300 every three months or so, or let's say $100 a month.

Many of you spend that much on cigarettes, dining out, or other things. Many of you have a credit card you could use, family you could ask, or a fundraiser that could be held.

I am sorry if I sound harsh. I am just so sick and tired of people bashing our LLMDs for making a damned living. They have every right to. Why do we think they don't?

My LLMD does not in any way, shape or form deserve this thread to have been started about him. I am almost sorry I recommended him.
 

---

Posted by sometimesdilly (Member # 9982) on :
 
amen, Tracy.

to those who have a problem with what their llmnd is charging- why don't you take it up with your doctor in person?
 

---

Posted by bettyg (Member # 6147) on :
 
here's just a quick statistic that i'm aware of:


our llmd costs for 1st visits range from $125/hr. to $ 1275 for 1st visit
*********************************


that's an exorbitant fee range to this farmer's daughter!


PLEASE do NOT ask me where the lowest drs. are, etc!! that's confidential!! i won't reply to that.
 

---

Posted by Blackstone (Member # 9453) on :
 
I don't mean the fan the flames here... BUT the following are FACTS

1. LLMDs generally CHOOSE not to take insurance. I've heard all sorts of excuses for this, but not one of them is viable. Taking insurance is a choice - no "regular" doctor is ever limited in what treatment they can prescribe because of insurance companies. Now YOU may be limited in what your insurance will pay for, but the doctors aren't under any pressure.

Not taking insurance is a financial decision, nothing else.

2. Doctors who take insurance NEVER get the amount that is on your bill. Ever. If you get a small sebaceous cyst treated for oh, lets say $300, the doctor MIGHT get $75 for that depending on your insurance company.

Insurance companies have these big books of CPT and ICD-9 codes - whenever a claim is submitted to them, they look at the code, go to that number and there's a fixed rate that is paid out. It doesn't matter if the doctor bills $200 or $2000, if the book says the doctor gets $100, then that is how much they pay him.

If the doctor complains, the insurance company says something like "Well, these are our rules. So, you can either take the $100, or you can withdraw from our network" Of course, if the doc withdraws from network, there's a good chance a lot of his patient base who has that insurance will go somewhere else!


3. LLMDs are few and far between. If a "regular" doctor was to say "sorry, I'm not going to take insurance", the patient would likely say "Oh, I'm sorry... I won't be able to afford this procedure so I'm going to find another Internist/Surgeon/Neurologist"

Unless that doctor had a huge, loyal established client base who could all pay out of pocket, he wouldn't be able to run his business at all, since there are plenty of other doctors out there that do what he does!

LLMDs don't have this problem. They also ALL seem not to take insurance. Thus, there's "no place else to go".

Thus, EVERY CENT from your LLMD's bill goes directly into his pocket.

All doctors have operating expenses (office, staff, malpractice to pay), and those that take insurance have to pay all those things with a lot LESS cash in hand, than those who don't like LLMDs. (Also, LLMD malpractice is relatively low. Malpractice is typically calculated based on the insurance company's belief that the doctor will get sued. LLMDs are typically internists and general practitioners - they rarely are sued and do not typically perform high-risk procedures. Currently, Obstetricians pay some of the highest malpractice, over 100,000 in Maryland. Unless a LLMD has been sued countless times or just plain deemed incompetent, there is almost no chance he's paying 250,000 a year).


4. LLMDs basically charge a lot of money for what amounts to experimental treatment. There is no accepted standard of care for Lyme. We all know that. However, there doesn't seem to be a whole lot of research being done either on behalf of these LLMDs.

In other disciplines, there are controlled and even preliminary experimental trials. Why are there so few here (outside of Columbia?)

If LLMDs really wish to prove they're right to the IDSA, how about getting together preliminary studies from within their patient body, at no cost to the patient?


Now - My opinion: I feel that it is unethical for LLMDs, knowing how much of a burden we have bodily and monetarily, to charge what they do. There is no excuse for a $350+ (non-new patient office visit) I don't even think a level 5 Office Visit CPT code goes up to that much. Many of us are disabled, unable to work, and yet we're expected to pay out of pocket for experimental treatments, with only lean hope of reimbursement?

LLMDs have the market cornered. They have a population of us - the sick, the tired, the weak, and the desperate, who are willing to pay anything and try anything to get better. They know we're not going to sue them. Unlike any other doctor out there, they can just treat and treat and treat, without giving any true prognosis, or without their patients having a reasonable expectation of being "cured". And so we stay with them, because we know that we won't get better care anywhere else because the IDSA treatment line won't suffice.

I mentioned before that LLMDs COULD do a lot more to bring the ILADS and alternative therapies into the common light - people are so quick to say that "conventional" medicine always shut them down, but LLMDs aren't really reaching out as much as they could either. They won't play the game - setting up scientific studies to PROVE their way is better.

I BET if every single LLMD took a certain facet of patients and treatment protocol and started a mini-study, there would be enough verifiable data in a year or two that no regulatory body could say that the IDSA's current observations are the end-all-be-all of treatment.

However, I have to wonder if LLMDs like being marginalized. If they were no longer "special" then all these treatment regimens would be available at "in network" doctors.

The market would be flooded if you will, and therefor they wouldn't be able to continue to refuse to take insurance, because, like just about every other medical specialty out there, there would be someone who will take the patients insurance!

Financially, it makes better sense to be championed as the "alternative underdog" who people will pay anything to.

Now, it may seem that I think that all LLMDs are evil people. They're not. I don't think many of them are even conscious of the whole of the situation. Some are genuinely trying to help people, but many of them have policies that contradict all the good their medical practice may do.

Do I think LLMDs have the right to make a living? Sure I do! However, there are tons of doctors out there every day helping people who manage to make a living without resorting to some of the tactics that LLMDs seem to. That's what rubs me the wrong way.

New lyme therapies need to be legitimized in the medical community and available to ALL at an affordable price, not just the wealthy. Snake oil salesmen need to be pointed out and sent away. Legitimate science needs to be verified, recorded, and applied - not kept by a secret cabal for financial reasons, brought out to only those with a wallet big enough and a mind zealous enough to "believe".
 

---

Posted by sometimesdilly (Member # 9982) on :
 
blackstone-

"facts," my arse.

i marvel at the coincidence of timing- the ISDA gets its fanny spanked today, and lo..all afternoon and night Lymenet;s traffic doubles- and half are lurking "guests,

and whoa.. suddenly folks pop in to mouth the totally scurrilous and debunked fiction that LLMD's are greedy and just a'preying on us poor folk.

tiresome in the extreme.
 

---

Posted by ICEiam (Member # 7519) on :
 
I think there is one thing that has been missed on this thread. Do those of you who are complaining about the cost of your LLMD's realize that they are not listed as SPECIALISTS?

Since Chronic Lyme is not recognized in the world of medicine and the IDS says there is no such thing as Chronic Lyme our LLMD's are paid as if they are PCP's, Family practice or any other non specialist.

Our insurance companies pay according to the type of MD you are seeing and they have a limit they will pay. So when your LLMD doesn't accept insurance that is why. Our insurance pays a Family Practice MD under $100.00 for an office visit.

Our LLMD is listed as Family practice. I suppose if you want to get the service you would get from your PCP from your LLMD then go to the PCP and accept what he/she says is your problem.

We have all gotten a long way going that route, huh? Then when your PCP can't figure out what is wrong with you they will send you off to your local ID Duck, who by the way gets paid by your insurance company the amount you pay your LLMD out of your pocket. Then when the ID Duck can't figure out what is wrong he sends to you a Rhumie or some other "specialist" that gets paid the amount your LLMD is asking for.

If you want your insurance to pay for your care to get rid of this life stealing Disease then you will have to accept and trust the MD's that will accept your insurance.

HUGS,
 

---

Posted by Blackstone (Member # 9453) on :
 

quote:

---

Originally posted by sometimesdilly:
blackstone-

"facts," my arse.

i marvel at the coincidence of timing- the ISDA gets its fanny spanked today, and lo..all afternoon and night Lymenet;s traffic doubles- and half are lurking "guests,

and whoa.. suddenly folks pop in to mouth the totally scurrilous and debunked fiction that LLMD's are greedy and just a'preying on us poor folk.

tiresome in the extreme.

---

Check my posting. I've been here for a long time. I'm certainly not a plant. I'm just a very disillusioned LLMD patient who is questioning why some of these policies are in effect. I don't want to see anyone taken advantage of, and as such I'm skeptical. Clearly, others share some of my concerns or else this thread wouldn't exist.

I differentiated my "facts" section from my opinion section. If you are calling my facts incorrect, then I'd be interested in your counterclaims and supporting evidence. Maybe there's something I'm overlooking.

[ 02. May 2008, 04:18 PM: Message edited by: Blackstone ]
 

---

Posted by METALLlC BLUE (Member # 6628) on :
 
I don't have much to add except saying, they are extremely expensive. Medical care in general! My morning meals while hospitalized cost more than 1 ticket see Under Our Skin in NYC.

Unacceptable. I don't care what anyone says. I'm pro-universal health care. It's in "all" of our interests, not just mine.
 

---

Posted by METALLlC BLUE (Member # 6628) on :
 
I don't have much to add except saying, there are extremely expensive. Medical care in general! My morning meals while hospitalized cost more than 1 ticket see Under Our Skin in NYC.

Unacceptable. I don't care what anyone says. I'm pro-universal health care. It's in "all" of our interests, not just mine.
 

---

Posted by jamescase20 (Member # 14124) on :
 
it is unacceptable, but its the system to blame, NOT the llmd, hes just doing what any business does in a free unregulated (no price regs) market. I am pretty sure every nation on earth has price points (max allowable price) for drugs and services. The govt actually has price controls, on EVERYTHING related to health care. Guess what country allows any price? USA. Guess who is pushing to keep it that way? It has something to do with people that have alot of money
 

---

Posted by UnexpectedIlls (Member # 15144) on :
 
OK I am going to TAKE DOWN THIS THREAD because OBVIOULY my ranting came off THE WRONG WAY

Tracy....IN NO WAY SHAPE OR FORM am I BASHING OUR LLMD.....He is the NICEST guy.....That price I was speaking of 900$ was the cost of another doctor COMPLETELY, a doctor that was CLOSER to me that I wanted to see so I wouldnt have to travel 3 hours to see.

I hate that when someone comes on here and says something it is taken as a BASHING on the LLMD. DId I ONCE say ANYTHING BAD about a PARTCULAR doctor NO I didnt and I WOULDT.

I also have the right to my opinions when I have no money and have been bedridden ILL for over a year and have NO money left. MY finace makes SQAUT and I just need care. We spent out last 625$ on seeing and LLMD in CT and I was VERY happy with him.

I never once said anything BAD about him and I am thnakful that he was recommended to me. OK we are all sick here and have cognitive dysfunction as well as other brain dysfunction and people are going to say things sometimes that are TAKEN the wrong way.

If you saw in my ORIGINAL post I was talking about 900$ charges that an LLMD was charging, I did NOT leave a name and YOU know that OUR LLMD does NOT charge 900$....SO you should know I was NOT bashing him or even referring to him...I wouldn not do that. I mean I didn't even say anything BAD about anyone.

In FACT that post had NOTHING to do with the LLMD I was referred to. I didn't even leave a name or trace of WHO I was talking about OUT OF RESPECT.

Some of you have been in this game a lot longer than me, and maybe at one time when your journey just started you had the same thoughts as me. Maybe you even got a LITTLE frustrated, maybe you even do sometimes now. Maybe you came on here looking for help and a place to vent.

I really want to clear this up because I am not teh type of person to sit here and bash ANYONE. I am sick, I am frustrated, and I am broke. And sometimes frankly I am ****ED at the world so give me a damn brake.

I still appreciate VERY MUCH that Tracy and her husband recommended the VERY nice Dr they did for me and my finace.....I guess I didnt thank them enough for them to realize I am not a bad person bashing their LLMD.

I come on here a little upset because I have no money and prices are outrageous and it turn into some political hearing on Shandy Monte, HOW dare I speak MY truth or I am BASHED. Big deal I said 900$ was a ridiculous amonnt of money to pay for an appointment because 900$ to me and my family is like winning the lottery right now.

I dont have the energy to sit here and defend myself anymore. I just wanted everyone to know that I AM NOT BASHING ANYONE, ESPECIALLY NOT the LLMD that I was refered to. In fact I never once mentioned his or ANYONE's name or even their location. I am just a frustrated person right now looking for answers.

Your assumptions about my post were wrong. I knew when I posted this people were going to get mad at ME. Thats what my opening statement was. Mad at me because I think 900$ is a lot of money. I even took out the word GREED because I knew that was the WRONG word to use, and used it out of pure frustration at my own situation.

I came on this site to get understanding, maybe vent about my sucky situation, Talk about my situation and see if anyone could relate, maybe even make some friends. I came here from the MP website where freedom of speech is not had, and I thought this site would be perfect. I could speak my mind and vent, I could get advice from people who have BEEN THERE, I could maybe even find out what the hell has been making me as ill as I am since the birth of my daughter. I thought we could speak our minds here. .

Ok I am tired and am having a tough time getting my point across the way I would like to. I hope you understand where I am coming from. I guess all in all what I am trying to say is...THIS THREAD WAS NOT STARTED ABOUT THE DOCTOR Tracy is referring to.....In NO way shape or form

I am not trying to be harsh...just want to be understood.

Thank everyone and I am done now.

Wellness to all

[ 02. May 2008, 03:20 PM: Message edited by: UnexpectedIlls ]
 

---

Posted by METALLlC BLUE (Member # 6628) on :
 
Nah don't remove it. What you're saying is valid as an upset Lyme patient, a person suffering, a person who often has no one to vent her frustration.

I know what it's like. Take a look at my thread there, almost similar situation.

http://tinyurl.com/4rb9gd
 

---

Posted by laura j (Member # 14257) on :
 
You shouldn't take it down or leave us. There are many on here that agree with you. I understand both sides but as someone who is also broker than broke, I agree that you can't get blood from a stone.

I'm borrowing $$ to pay for an upcoming appt. It stinks but it's the way it is unfortunately for us. I am in constant desperation trying to figure out how I'm going to get through this financially and emotionally. I'm worried it will tear my family apart.

We just have to keep going somehow and do the best we can. What choice do we have?

You said you thought you could come on here and vent. You absolutely can! This is the perfect place for that. You got a lot of different view points and that's okay. Some sided w/you so that should make you feel good. You also got a lot of valuable info on why things are the way they are.

Just like you were free to post how you felt, everyone else is free to post how they feel about it.

I know you posted it out of frustration b/c you don't know how to pay for your LLMD and that is something many of us go through and many can relate to.

I think it was a valuable post for you and everyone else.
 

---

Posted by Lymetoo (Member # 743) on :
 

quote:

---

Originally posted by ICEiam:
I think there is one thing that has been missed on this thread. Do those of you who are complaining about the cost of your LLMD's realize that they are not listed as SPECIALISTS?

Since Chronic Lyme is not recognized in the world of medicine and the IDS says there is no such thing as Chronic Lyme our LLMD's are paid as if they are PCP's, Family practice or any other non specialist.

Our insurance companies pay according to the type of MD you are seeing and they have a limit they will pay. So when your LLMD doesn't accept insurance that is why. Our insurance pays a Family Practice MD under $100.00 for an office visit.

---

quote:

---

Originally posted by Lymetoo:

quote:

---

Originally posted by ICEiam:
I think there is one thing that has been missed on this thread. Do those of you who are complaining about the cost of your LLMD's realize that they are not listed as SPECIALISTS?

Since Chronic Lyme is not recognized in the world of medicine and the IDS says there is no such thing as Chronic Lyme our LLMD's are paid as if they are PCP's, Family practice or any other non specialist.

Our insurance companies pay according to the type of MD you are seeing and they have a limit they will pay. So when your LLMD doesn't accept insurance that is why. Our insurance pays a Family Practice MD under $100.00 for an office visit.

---

Very good point! My LLMD is a Family Practice MD as well.

---

quote:

---

Originally posted by Lymetoo:
Those without medical care:

Have you tried ordering abx from an online pharmacy?

Just wondering if that's possible.

---

While I've never done so, I've done quite a bit of research on this.

There are "White market" online pharmacies, and "Gray Market" online pharmacies. White market ones typically are housed in Canada etc...and sometimes require you to send a copy of your prescription. They often carry brand name and "legit" generics at a fraction of the cost. There are some "White markets" in Mexico too, where you may not need a prescription because the laws of the country there allow you to buy antibiotics over the counter.

Gray Market pharmacies often do not require prescriptions and sell unlicensed generics from India and China ("Kamagra" and "Silagra" viagra knockoffs) I would be a little more cautious of these, but there are some great deals to be had here.

***Very Important*** It is technically illegal to import any quantity of painkillers stronger than Ultram (Tramadol), so if you see any place selling oxycontin/oxycodone/vicodin (usually for a high price), they are usually operating "gray market" through the use of an in-country "Candy doctor".

Overseas pharmacies can be great resources though, especially when you want to utilize something that hasn't been approved in the US quite yet.

For antibiotics, a licensed "white market" pharmacy will probably save you money

[ 02. May 2008, 04:19 PM: Message edited by: Blackstone ]
 

---

Posted by Peacesoul (Member # 13709) on :
 
I have three things to say

1- my LLMD ROCKS and she charges $250 for 2 hrs and $125 for every follow up

2- Any Dr who charged $900 for a consult is a thief, I don't care if he /she saving lives.


3- I'm happy I live in Canada where I don't have to pay anything for other medical care
 

---

Posted by bettyg (Member # 6147) on :
 
unexpected,

please do NOT remove this, as this questions comes up over and over and we can refer folks to this to do a search learning people's perspectives on this: pros/cons.


yes, you can come here and vent! i've so many friends here who have LOST EVERYTHING due to lyme treatment expenses!! it's not right.


so don't leave. we're each able to voice our opinions as long as it is done WITH RESPECT!
 

---

Posted by Mtgirl (Member # 13278) on :
 
This is a major issue across the entire medical industrial complex. We feel the weight of the ``for-profit'' system while we attempt to get appropriate care for Lyme Disease; however, it touches all people with chronic medical conditions and the doctors that treat us.

This system dictates how doctors can treat their patients, and insurance companies dictate the fees for services. To make matters much more complex, legal concerns have driven the cost of malpractice insurance so high that many doctors have abandoned their professions altogether, as they can no longer afford to practice, pay for their over head costs, and provide effective services.

This issue is of great concern to this country as a whole- not only to individual patients that have reduced access to medical care due to cost, limited insurance coverage, or no coverage.

It is erroneous to point fingers at the patients that raise their voices, and it is equally wrong to fault doctors for the fees they charge. We, the patients should be demanding that something take place on a federal level to address this. It is far larger than you, me or our LLMDs.

On a personal note, I have recently been faced with the burden of deciding whether or not I can afford to receive the medical care I need. This is not simply a matter of reallocating money from other areas of my life; it is basically a conscious choice to seek medical care and go into serious debt, or continue as I have been and potentially become too sick to work, and lose ALL insurance. The United States is one of the only industrialized societies that face these issues.

You bet I'm mad. We all should be mad, and not at each other, but at this system that is keeping us sick!!!

 

---

Posted by sometimesdilly (Member # 9982) on :
 
ditto mountain girl
 

---

Posted by perplexed (Member # 1913) on :
 
And I am hopping mad also! Lyme is really bothering me this week and no help. This is a great thread and an eye opener for me. It makes me feel less alone in this battle.

Hugs,

Perplexed
 

---

Posted by Cass A (Member # 11134) on :
 
What a discussion!!

I tried self-treating and working with my PCP, who would pretty much prescribe what I requested (but not IVs), for over two years, with some symptom alleviation, but ending up hospitalized with a serious herx!!

I went to one "LLMD" in my area that charged me over $300 for about 30 min, told me what to do without explaining any of the risks, and sent me off with a prescription. He does have a nurse that specializes in handling Lyme patient phone calls. He took insurance, but wasn't part of my plan's network.

Then, I went to an infectious disease specialist who tends to allign with the IDS "guidelines," but was more flexible. He was a nice guy, was covered by my health plan, and prescribed me 400 mg Doxy. He wanted me to get a functional evaluation, which would have cost about $1200 out of pocket, and then he would prescribe IV antibiotics, if I would promise to follow up with another functional evaluation. Hmmm.....

The second LLMD I went to charged about $525 for 2 1/2 hour initial consultation--and we used every minute of it, plus! He charges for phone consults also, but not for simple questions by email.

Aside from himself, there were three staff working with or for his patients. With the overhead for office space, utilities, etc., I'm afraid I think the price was about what he would have to charge to operate.

This office takes no insurance at all.

From working on many health-related issues in California, I would not wish for more government control of health care. Even health care plans create a very expensive administrative system that does little to promote health and costs a fortune. Government bureaucrats are yet another layer of costs. Then, if you saw the list of everyone who gets access to your medical information when you are in a health plan, you might fall over.

If you look at what you are billed and what the insurance pays, you will find that the bill is about 10 TIMES what the provider actually gets for the service--at least that was true for me when I was hospitalized recently. The bill I got was $15,000 for two days, and the insurance company paid $1,500 or so.

Then, there are the frauds.....

This area is definitely a problem!

Best,

Cass A
 

---

Posted by Brussels (Member # 13480) on :
 
For me this price is outrageous and I find you guys in the US lost control of what costs for medical care should be, with or without insurance.

My Belgian doctor charges me about 40 euro (more or less 60 dollars) for at least an hour appointment (with or without insurance).

A medical doctor who's accupuncturist too charges about 70 an hour (less than 100 dollars).

Here in Switzerland, prices are higher, and my lyme specialist charges me about 150 francs for an hour (about 150 dollars). I find it expensive. But most of it is covered by the insurance.

The German lyme specialist (naturopath) charges about 80 euro an hour (so about 120 dollars an hour).

Just calculate how much your doctors earn a month if they charge 900 dollars an hour. This is no decent price for any specialist in my opinion. This is outrageous.

A lyme specialist there earns A DAY what an engineer here in Europe of high qualification earns in A MONTH??

How many of you guys, specialists in your fields, earn 144,000 dollars a month??

Here in Europe, a guy earning 10,000 dollars a month is considered very well off. No matter which speciality he's got. Sorry guys, I think this is outrageous. People pay because they're desperate and because they have the means to afford it.

Doctors can be nice because they are risking their professions, I agree, but anyway, only the well off can afford their kindness. It's then a pretty selective kindness in my view.

Selma
 

---

Posted by Aniek (Member # 5374) on :
 
Blackstone,

"Taking insurance is a choice - no "regular" doctor is ever limited in what treatment they can prescribe because of insurance companies. Now YOU may be limited in what your insurance will pay for, but the doctors aren't under any pressure. "

That is actually not true. Insurance companies do kick doctors out of network when they feel they are costing too much by overprescribing or not following guidelines. I have heard of doctors that were told by insurance companies that they diagnose Lyme too much. Those doctors can be dropped from their networks.

In addition, some insurance companies drop doctors when they have disciplinary actions. So LLMDs with disciplinary action for using longterm abx may not be able to be on any insurance networks.

While insurance companies do pay negotiated rates, those rates are sometimes well over $200 for an appointment. My insurance paid about $250 for a 10 minute appointment with a surgeon. PCPs are usually $60-$75 in network.

Our system sucks. I wish all LLMDs were on people's insurance. But most of them are not just trying to make lots of money. If they were, they wouldn't be treating Lyme and putting their license's at risk. They are stuck in a broken system.

You also asked why there isn't more resarch. Part of the reason is that the funders, like NIH, don't see chronic Lyme as a problem. Since the treatment is antibiotics that are already on the market many of which have generics, the drug companies aren't doing research.

It's another problem with our system. Research dollars don't go where they are needed. They go where money can be made or to the "it" illnesses of the moment.
 

---

Posted by bettyg (Member # 6147) on :
 
selma, thx for your comments from an European view and stating what $$ costs are over there.

aniek, thanks for your explanations after hers as well.
 

---

Posted by heiwalove (Member # 6467) on :
 
i agree you can't tap blood from a stone. those of us who can afford US LLMDs and/or are lucky enough to have insurance cover all or most of our appointments are blessed, indeed.

for the most part i agree it's not the fault of LLMDs, per se. the healthcare system in this country is horrendously, irreparably broken, and most LLMDs are kind-hearted, humble doctors willing to put their lives & their licenses on the line to treat us. however, i think some of the more expensive lyme docs charge totally outrageous prices.

as a general rule you can't get treatment for chronic lyme unless you have money, assets you can sell, or relatives/friends from whom you can borrow.

and i think that's a crime.
 

---

Posted by UnexpectedIlls (Member # 15144) on :
 
Well this certainly did turn into a heated debate...

I am hoping that Tracy read my respnse to hers....If you didnt, I want to repeat that this post WAS not about our LLMD....IT was about a price of another doctor completely.

Anyway, I only posted this because I was so mad about how much it was to be sick and be seen by a doctor...I was not bashing any doctor, especially not my own. This thread was not even about my doctor, or his price.

I wish everyone well and the best of care!!
 

---

Posted by METALLlC BLUE (Member # 6628) on :
 
I'd complain too Unexpected. You've received numerous responses from me. When you're sick and crippled, you're damn right I'm going to complain. I'll point the finger at "everyone" who is involved in this mess. It's then up to them to deal with how they want to respond to my feelings.

Always express your feelings when it is safe to do so. I'm not going to feel "oh boo hoo, I have to protect others from my feelings" just so I can stuff them and feel worse for being a coward.

Do yourself a favor though. Make sure you're working to change things if you do continue to point the finger. Otherwise it's a waste of time after awhile. Make things happen, write representatives, go to protests, write a book about the controversy. Hell, open a blog dedicated to a particular aspect of Lyme.

What goes around comes around. All will get an equal serving based on my observations. Do good things and good things will probably happen to ya. Do bad things, and bad things are probably going to happen to ya! Sounds like the IDSA to me.
 

---

Posted by UnexpectedIlls (Member # 15144) on :
 
Hey Metallic Blue...Well you said it!!!

I have started to do soemthing about it. As much as I can from my bed. I have started documenting it, so please go to my YouTube page.....I am doing what I can. And you'll even get to see me when I was healthy and doing what I love best...performing!!!

www.youtube.com/shandymonte
 

---

Posted by METALLlC BLUE (Member # 6628) on :
 
Jesus, you're good! I watched some videos. Amazing. And I don't normally say that. I think most things suck, and I'm blunt in my opinions! So I hope you get well, so you can perform more! Well, there are other reasons too, but, that would be nice!

Let me know what's going on with your diagnosis and where you're at. I know you're seeing the LLMD soon.

-- Mike
 

---

Posted by ByronSBell 2007 (Member # 11496) on :
 
My new LLMD only charges $250 per consultation and each consult is 2.5 hrs long.....

Of course there is weekly blood work and IV treatment in here clinic is around $2,000 a week, it sounds like alot but if oyu think about it.

That is paying or the IV ABX, IV glutathione, IV antioxidants, IV bendadryl, extra fluids, and being able to see the LLMD any day of the week for a brief session if you want. Also the nuses care and clean your picc line as well. All of that is for 7 days a week of treatment, twice a day.

I figured it is going to cost around $27,000 to get well again for me...
 

---

Posted by Larkspur (Member # 5131) on :
 
Shandy - you are amazing! Wow.
 

---

Posted by carly (Member # 14810) on :
 
This topic needs to be here and discussed, I agree!

I travel out of my way to see an LLMD who charges less per visit than the "closer" LLMD who's in the $800 range for an initial visit (not including bloodwork).

The advice I got from others was that I needed to decide who I could be with for the long haul.
Both are excellent and highly recommended, BTW.

The market allows the one to charge more, his operating expenses are greater.

Bottom line, it's expensive to get sick, to have surgery, to get treated for any medical condition long term...
carly.
 

---

Posted by ladycakes (Member # 12619) on :
 
If nothing else, this post has made me realize just how lucky I am that my LLMD DOES take insurance. Even with insurance, we're spending thousands of dollars a year on medical bills. Getting me diagnosed, all the tests I had run, the specialists I've been sent to, and now IV antibiotics... I worry every day that my insurance will stop covering it.

Maybe I was looking at the wrong figures, but I think that my doctor only charges $65 for an office visit. Are some areas/cities just more expensive than others?
 

---

Posted by merrygirl (Member # 12041) on :
 
Shandy,
Please dont leave the board. I think it is a good discussion. I hope you are doing ok.
Melissa
 

---

Posted by not so sublime lyme (Member # 15185) on :
 
It is so sad that so many people in the U.S cannot afford even basic healthcare. Sadder still is the fact that there are so many children without access to care.

I hope someday we'll realize how much we can learn from the successful healthcare programs in other countries.

Why can't we make it happen here? At the very least we must make sure we are well-informed before we enter that voting booth!
 

---

Posted by Tracy9 (Member # 7521) on :
 
Shandy,

So sorry I haven't responded sooner, I very appreciate your clarification and all is well.

I hope our LLMD can help you, and help us all!!!

Hope you start to see the light soon!

Tracy
 

---

Posted by UnexpectedIlls (Member # 15144) on :
 
Kayas Mom

I am so so so sorry for what you are going through. My heart goes out to you and your daughter. I am keeping her in my prayers. This is just horrible.

It is ridiculous I know....the costs to be sick, to help your child. My son has Lyme, but not as bad as your little girl. I get scared everyday about my daughter (1 year) because my illness really started during my pregnancy with her.

I wish there was something I could do....I can just jeep you in my thoughts. I jsut cant imagine what you are going through. Lyme disease is hard enough for an adult, but for your baby to be going through this....I just cannot imagine.

WHat doc are you seeing? You can PM me if you'd like.
 

---

Posted by METALLlC BLUE (Member # 6628) on :
 
Which PCP did you see that was willing to work with your LLMD? You can PM me if you wish. I'm always looking for good physicians willing to help patients who have an LLMD.

It's often "as" important as the LLMD having that support close to home.
 

---

Posted by METALLlC BLUE (Member # 6628) on :
 
Kayas, have you considered seeing an LLMD who is affordable? Did you know you have access to hundreds of other doctors, some of which are even closer to you? I've got a list a mile long and there are a lot of fantastic LLMD's who don't charge ungodly prices.

I mean I can't gaurantee anything, but you could try calling. I'd be willing to give you some names if you ever decide to transfer your care.
 

---

Posted by not so sublime lyme (Member # 15185) on :
 
Kayas Mom,

My heart was breaking as I read your post. I will keep you and your family in my prayers.

You sound like an amazing person (and an amazing mom.)

Jeanne
 

---

Posted by Brussels (Member # 13480) on :
 
Here's Marie McQuhay lyme story in utube.

Parents got no more money to treat her, they got into deep depression, lost their business, she's totally bed ridden, no insurance will cover her treatment for post-lyme, left to die without help, they lost everything.

http://www.youtube.com/watch?v=qpnyMIPglLI&feature=related

This is inacceptable. It's more than outrageous.
 

---

Posted by Aniek (Member # 5374) on :
 
I want to reiterate what Metallic Blue said about other LLMDs being available.

Most LLMDs will provide insurance claim forms. There are a few that refuse to do anything to help patients get insurance coverage. I can't answer as to why that is.

If anybody's doctor refuses to help with the insurance process or does not follow through with promises, then you, as the patient, have the right to not use that doctor.
 

---

Posted by DW213 (Member # 9590) on :
 
I am a patient of the LLMD referred by Tracy9, and I am EXTREMELY grateful he treats me.

If being a Lyme doc is so lucrative, how come there are so few? I live in a highly endemic area, and there are ZERO docs in my state who are LLMD's.

Just sayin', if being an LLMD was the road to riches, more docs would be on it!
 

---

Posted by METALLlC BLUE (Member # 6628) on :
 
Actually I have a few + doctors in RI now who treat Lyme! Woo hoo! If anyone knows of others in RI who treat, let me know.

Also, you're seeing Dr. P right? Could you give me a summary of your experience with him, whether he's compassionate, knowledgable etc? Surprisingly for how awesome he is (I met him), I actually only have one or two patient reports on him.
 

---

Posted by DW213 (Member # 9590) on :
 
Hi, MB

I also have seen one doc in RI who treats Lyme, Dr. G in Wickford. He is my in-state doc in case I go the IV route.

Though I am not well yet (1.5 years into treatment) I feel that Dr. P is the doc who has the best chance of getting me there.

I don't know what information you are looking for in a "review". PM me with questions if you would like.
 

---

Posted by tanzi2u (Member # 9237) on :
 
Metallic Blue, please clean out your mailbox. Thanks!
 

---

Posted by omgwtfbbq (Member # 15446) on :
 
Try having a disease where there are three specialists in the country that take your insurance. One has over a year wait for a new patient appt. so it's not even an option.

I'm left with only one doc who is great, but his office is only open 3 part days a week so they are hard to get in contact with. Very frustrating but it's my only option, and it's a 1100 mile round trip plus $20 to $40 in tolls and $20 for parking. It's still MUCH cheaper to go see him than than the closer doctor that doesn't take insurance.
 

---