posted
Do all LLMD's charge a fee for monitoring your progress on IV abx?
I just found out that my doctor, a very prominent LLMD in ***, charges **** a month for monitoring your IV progress if you choose not to purchase IV meds and supplies directly from him. This includes an office visit but still is about *** a month for monitoring.
I just about cried hearing that. By the time you pay that fee, how do you pay for the meds? To go directly through this clinic, it costs anywhere from *** a month quoted from the clinic.
I just wanted to know if this is customary of all LLMD's or just this one. I don't want to have to start looking for a new doctor already, but two of us are going to have to take turns on IV and now I am trying to figure out how one of us is going to be able to do it.
posted
Find another LLMD, that is an outrageous fee. How exactly will he monitor your IV therapy? For that amount of money he should be going to your house, giving you a full body massage and all of your housework on a weekly basis!!!
These are the kind of doctors that should be brought up on charges, not the LLMD's that actually are helping people, but that's just my opinion.
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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seekhelp
Frequent Contributor (5K+ posts)
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posted
I'd be ****ed beyond belief.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
The fee may be there to pay for their infusion nurse?
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Well best unfortunately does not always = reasonable cost. Believe me, I know.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Something is wrong...
Make sure they repeat the costs to you and explain
Having Lyme isn't easy....hugs
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Ok I think I know which Dr you are referring to. Before everyone blows a gasket you need to call them and verify what this fee includes.
I know when I was researching for a LLMD and spoke to his office, his rate is NOT any more or less than the rest of them considering his experience. So I think something is amiss here. I don't believe he is out there to rob people... I think their service has to include a little more than "monitoring" your progress! Please call to verify.
posted
This is a contract you sign from his clinic that says that if you choose not to purchase IV drugs and supplies from him, you must pay the clinic **** month to monitor the progress.
I have confirmation of this fee from 4 people and the patient advocate won't discuss the form.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This is one of the reasons I do NOT recommend this doc to people. I learned about this fee about 2 years or more ago when he moved to the area.
If you don't go on IV, his charges are not that out of line, but if you go on IV, his charges make him the most expensive lyme doctor in the country.
Prior to this, a patient had no choice and had to buy all their IV supplies from him, and they would report on LymeNet that it cost them 3 times the amount by having to do that than if they bought the supplies themselves. This "IV monitoring fee" makes up for what he is losing if you don't buy all the supplies from him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
That seems strange to me. I am on IV now, and I purchase my meds and supplies from wherever I want to. He just faxes the order to the company i am getting everything from. The only fees I pay my LLMD are for my monthly visit.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Searching,
Do you see this particular Dr Faithful777 is referring to though??
posted
I've been on IV antibiotics since June, my LLMD does not charge me anything other than an office visit fee when I see her every 2-3 months. She monitors my bloodwork, and calls me in between office visits at no extra charge. I purchase my antibiotics and supplies from a home infusion service. I think I would find another LLMD.
Posts: 143 | From Louisville KY | Registered: May 2010
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posted
oh, no, I guess I did not clarify. I was talking about MY doctor and MY experience. Thanks for pointing that out, SG! Sometimes it seems like my hands and my thoughts are two different people, and when I read what I wrote, it is not at all how I was intending it to be!
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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posted
We are all going to try and stay on orals for the meantime. If IV comes up, then we have to go to another LLMD unless we all win the lottery!
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I see this doctor - just started, actually. Hubby and I did get sticker-shocked, but we think his IV approach is our best hope. Orals haven't been able to touch my deep CNS Lyme. We think the targeted, aggressive, pulsed approach with a variety of antibiotics is what I need.
This doctor doesn't use rocephin in his practice. His PA explained to me that it is like "hitting an elephant with a feather". I have to agree that rocephin has only gotten me so far and then I plateau and relapse.
I am being "prepped" for the IV protocol. High quality diet, sleep meds, help with anxiety/depression, help with pain management, targeted supplementation to address deficiencies, extensive bloodwork to get a good idea of where I stand. So thorough - not off on tangents like some LLMDs, and certainly not afraid.
So far, I feel more hopeful than I have in 8 years and I'm willing to pay the price.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
The IV fees should be disclosed before you have your first appt.
Being willing is all good, but you have to be able to pay the price.
If the fees were disclosed, one could decide what one can afford before getting involved with all the first visit costs for two people.
I am on the same protocol as you are. There are two of us needing IV. I was prepared to pay for one of us now and then the other in a few months. The extra fee, kills any chance of us being able to afford the IV medication after paying the fee to the clinic.
This doctor knows his stuff. There is no doubt about that. It is hard changing doctors and at some point, finances will force me to because I didn't know up front about this "overview" fee.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I am very sorry there are two of you needing IV. If that were the case in my situation, it would not be possible to do this doctor's protocol.
My husband and I are borrowing against our IRAs and 401K. We are cashing in a mutual fund to pay off the mortgage on a duplex we own. We'll use the money we receive as landlords to repay the loans over the course of 5 years.
Hubby has always been tight with the money and now I'm glad for it. He is afraid I will die if I don't get this treatment and I think he may be right. My CNS symptoms are very severe and my previous LLMD refused to address it. I do give the former LLMD credit for bringing me out of bart and babs purgatory.
I just need all the great guns targeted at this. If my new LLMD is going to charge the pants off me but give me a future I don't believe I currently have, then I'll buy new pants later - if I can successfully clear out the horrid CNS problems.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
We can't borrow against a company retirement plan, we tried but we don't meet the rules for taking out the money.
We can't sell our house because it is new and the economy won't support us getting out of the loan with housing values being so low. We have done all the stealing from Peter to pay Paul, there can be so what we have is it.
I have the money to go six months with abx, but not if I have to pay that fee to the clinic in addition to the meds.
If I can't do orals with results, then one of us will go to a different doctor.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lymeladyinNY
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Member # 10235
posted
It's terrible what we have to go through financially with this - the disease is bad enough!
We found out today that we can't borrow against our IRAs or 401K. We now have to beg for a loan from our credit union. Paying this off will mean long-term deprivation for my family. We may have to downsize, but houses aren't selling in our neighborhood.
As if we didn't have enough stress. And I feel so horrid tonight. I know I can't go on this way.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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lymeladyinNY
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posted
It's terrible what we have to go through financially with this - the disease is bad enough!
We found out today that we can't borrow against our IRAs or 401K. We now have to beg for a loan from our credit union. Paying this off will mean long-term deprivation for my family. We may have to downsize, but houses aren't selling in our neighborhood.
As if we didn't have enough stress. And I feel so horrid tonight. I know I can't go on this way.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I'm feeling so fortunate for my doctor!! Good luck everyone!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Tracy9
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Member # 7521
posted
I couldn't borrow against my IRA or Retirement funds either. I had to cash them out. You can always do that. You come to a point with this disease where nothing matters but getting better. We came to that point long ago. There is no retirement or future if you die from this disease or are too sick to live. We can't think about tomorrow when we can't even get out of bed today. EVERYTHING is gone, all stocks, all retirement accounts, all the kids college savings, all our savings, everything we could sell; we are down to selling little things in the house on consignment at a flea market for weekly groceries. Literally. And I'm not angry or sad. It's just the way it is. Life changed. DRAMATICALLY. We also found that a lot of what mattered before really doesn't matter. Like clothes. I pretty much live in pjs. Cars. We went from a Porsche Cayenne to a 1997 Jetta that someone from church donated to us because our car got repo'ed and what we replaced it with, the engine blew.
We were extremely hard working, well educated, high earning people. We pay our bills every month and we get by but with all the extra medical bills there is nothing left. We are too sick to make meals so food is cheap anyway when you don't cook.
As far as your LLD, I am familiar with who you are talking about. I agree the fees are exorbitant and not everyone can see him. He is among the best of the best and his prices reflect that. Only those with the means will be able to be his patients. I can say he uses an extremely aggressive protocol that has gotten a lot of people well. I have a friend who is his patient who flies from across the country to see him, and she says for what she pays, it is worth every dime. He calls her back any time of the day or night within thirty minutes. For what you pay, he makes himself totally and completely available to his patients. So if you are willing to pay for it, you get extremely aggressive treatment, a very unique protocol, and a top LLD at your beck and call.
For most of us, we won't get that. This doctor is not a bad guy. Both his wife and young daughter have been fighting cancer and his daughter almost lost her fight this past year. He is very good. The fact is, most of us can't access care from him. So we go to who we can afford and do the best we can. I can only go to a doctor now who takes state Medicaid. I see an infectious disease doc. I spent years paying out of pocket for the top docs and I just can't do it anymore. The 401ks and the kids college savings are gone.
That's life. That's America. It's the way it is. I have several friends who are getting NO treatment and never will because they have no money, and no access to any Lyme docs at all who take state insurance or Medicare. They've gotten all they can get and they just suffer.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I would cash out my husband's retirement account in a second to pay for my treatment. When it is a company plan, you don't have that option.
I know people are worse off than I am. I should have started treatment two years ago, but did not have to funds to even pay for the appt to see an LLMD.
I know what this LLMD has gone through personally. I am in contact with many of his patients. That is why I decided to see him. All I have spoken to ARE getting better.
I am going to try and figure this all out. I honestly believe that this is the doctor who can get me well. He certainly has my confidence, now we will have to see if I can pay his fee.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Same here - I have confidence but can I pay?
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
It's a really hard thing. Many people could get well with the high priced docs like this one, or Dr. K, but will never have access to the care. That's just a statement of fact. Most of my Lyme Friends now are in treatment with Dr. K and getting better. Many of them were hopeless cases. One sees both Dr. J and Dr. K. She is finally getting better doing treatment with them both. She was extremely sick and things seemed hopeless.
Others of my closest friends can't afford treatment and get by on things like ABart and ABabs and herbs they get themselves. I've seen several top lyme docs, the one I see now is decent. I focus my funds on my son's treatment and now my husband's. They have a shot at getting better. We've spent so much money and so many years on me; I'm not so sure I'll ever get a whole heck of a lot better, but they probably will.
I also have developed autoimmune diseases, one serious and incurable, and that just mucks up the whole picture for me. I can't often tell what is being caused by what. Therefore I could throw thousands at Lyme treatment just to find out most of what I'm dealing with is Myasthenia Gravis and it was just a waste.
What I am doing is going back on IV Rocephin. I just did two months of Tygacil and did see some good improvement, but could not tolerate the nausea and vomiting. I'm going to try Rocephin and see if it helps me long term. I've never been able to do long term IV in the 7 years I've been sick, because I have a blood clotting disorder and my PICC lines always clotted. However now I have a chest port and I'm on Coumadin and it's been fine for 9 months.
So I'm hoping some long term IV combined with orals may actually show me some real improvement from my continued Lyme symptoms.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymeladyinNY
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posted
I hope so, Tracy. It sounds like you and your family have been through the ringer. Blessings, Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Hi. Could anyone share what this great protocol is that the doctor is using with IV - even via private message?
My daughter with just 2 months of IV rocephin has gallstones and a very inflamed gallbladder. U/S showed no gallstones prior to rocephin.She has had lyme since childhood - now 30 but you know those quest tests and I just didn't know any better.
I too am heading towards IV having had lyme for multiple decades. Thanks for any help. Ginny
Posts: 19 | From CT | Registered: Nov 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I think it's okay to share his main IV drug is Tygacil. It's been shown in the most recent studies by UNH and other studies to be the most effective treatment for Lyme Disease. I used it for 2 months and got more improvement than I've gotten in 7 years. I can't take the nausea and vomiting though. It can be very rough on about 35% or more of patients with nausea and vomiting. But it can be a wonder drug if you can tolerate it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I see you are from CT. There is an LLD in CT who uses Tygacil, that is who I saw. He takes insurance too. Not sure who you are being treated by but feel free to email me at [email protected].
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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