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» LymeNet Flash » Questions and Discussion » Medical Questions » Have you recently done IV abx treatments with Dr. J in SC (was in NC)?

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Author Topic: Have you recently done IV abx treatments with Dr. J in SC (was in NC)?
justag
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I had my initial appointment with Dr. J last Friday (April 11) but was disappointed that he'd charge $xxxx a month for contract if I want to do IV treatment with him. This fee doesn't include any IV abx and medical supplies...

I asked if Dr. J could prescribe IV abx and I'd work with my local doctor to monitor me, of course I'd pay Dr. J any phone consult fee if I have any questions or need additional help, and Dr. J said NO...My insurance co. covers a portion of IV abx and supplies, but right now I don't know what IV abx to use [Frown]

How have you done IV treatments with Dr J if you are on IV treatment with him, and are not in SC?

Thanks a lot!!!

[ 15. April 2008, 07:57 PM: Message edited by: justag ]

Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
justag
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call for Dr. J's current patients, please... [group hug]

if you've got relief from this option with Dr. J, I may still give it a try even though it's very costly...

Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
sfcharm
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If these charges are serious than I would run the other way.

Any Dr. who charges that amount and it does not include any Rocephin or other IV drugs is giving the Lyme Dr.'s who want to treat us a bad name!!

I'm nine months on Rocephin IV and those charges are ridiculous!

Barb

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ConnieMc
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Justag-

I am curious. Can you tell us exactly what the $2000 a month does include? For example -

frequency of visits?

certain labs and at what frequency?

unlimited phone contact with them?

I would assume that since this is a "contract" that the contract must be well spelled-out.

My point is - if some of this is something that can be filed with insurance, for example, labs, how would you do it if it is intertwined within a monthly contract fee?

Also, I was under the impression that an appointment charge for an established patient is about $250 each. Even if you were seen every week, that would only be about $1000. I assume this $2000 fee must include something more than just picc line checks/cleanings and doctor visits. But perhaps the fee is partially for the fact that it is IV and IV can be risky?

Just curious ... I am actually a patient of his, even though I have not been since he moved to SC.

Thanks...

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justag
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I don't have the 3-page contract with me now, and will update this thread when I get home.

Anyone else heard of this contract or is using IV treatment with Dr. J?

My current local doctor's clinic can help me with all PICC issues and IV supplies, I simply need Dr. J's advice on what IV abx to try - why can't I just pay him office visit and phone consult fee? Dr. J mentioned "this is to protect my proprietary intelligence and experience treating this disease. or else, it won't be fair", but with this disease going on and seeing its uncertainty, how many of use can afford this price that can't guarantee a cure?

It's wrong to charge patients like this...

I wish people who have used IV treatments with Dr. J in SC (was in NC) could speak out and share their experience.

Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
justag
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can anyone who's used IV treatments with Dr. J speak out and share experience with us? [group hug] [group hug]

Sorry to being "obsessed", I've heard good comments on Dr. J before, and now I'm still in disbelief on his charge schedules [dizzy] [dizzy] [bonk]

Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
CraigC
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No experience with the IVs, but I am going to see Dr. J next month, as you well know. I'm pushing for a cycling of oral abx, since I'm still leary of going on IV therapy, whenever the severity of the symptoms [at least up until now], do not warrant it.

He's expensive, no doubt. But, at least in terms of office visits [out of pocket], he seems to be right in line with other LLMDs that I've checked.

Somebody else could probably answer to the IV question...

--------------------
Craig

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ConnieMc
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Well, I have had a long history with Dr. J. I first saw him in 2001, and went through 2 different courses of IV. But it was a long time ago. 2003-2004. In fact, I feel that I was among the crowd that first tried his treatment methods and there was a great deal of trial and error involved.

He has said directly to me that as a result of his experience with IVs (2002-present), he has been able to significantly reduce treatment time and streamline the treatment process. This certainly makes sense. Back when I was a part of it, there was a great deal of learning going on and I probably indirectly contributed to that process. For example, I was on IV for 10 months (the first time), and during this time, he treated all coinfections. I always noticed that I felt better when on Mepron, etc. (Babs drugs) Well, when I came off, I crashed horribly. He retested and was actually surprised to find that I tested positive for Babs. I may be wrong, but I believe that before that point, he did not realize that Babs could be persistent. As a result, I later had another course of IV and since the treatment was more directed at Lyme/Babs, I made amazing progress.

Unfortunately, I developed a picc line infection and my line had to pulled prematurely. I still had enough to realize fairly good progress during that time and once I got over the sepsis, I finally started making progress on orals.

I missed about 3 years of work and as a result of Dr. J's treatment, was finally able to get on with my life. I started a new career and while I still have some residual symptoms, and some days my brain is mush and does not want to work right, I have been able to push Lyme, etc aside to have somewhat of a life.

I can only imagine this is a hard decision and lots of money and I would not want to be in your shoes. Back when I had treatment, my insurance paid pretty well. But that is over now and as a result, many, many people are not able to take advantage of Dr. J's expertize.

I know very little about Dr. J's current IV treatment methods as they are so different than they were back when I was involved. But I do know that he is the one with the wealth of experience who can most likely help you make progress. The hard part is the fact that there are never any guarantees. I know of many who have done much better, and some who have not.

I will try to answer any other questions you have. If I can think of someone who has had recent IV treatment with him, I will try to find out if they are willing to communicate with you.

Take care...

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CraigC
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Well, I for one could not afford the IV treatments, even if given by the best. The cost of travel to see him, etc., in addition to the time that would be needed off from work, makes it impossible in my situation. I'm thankful that I'm seeking help early enough, where I think a round-robin of orals will probably suffice [at least I'm hopeful].

I've heard many good things about him, so I definitely am encouraged about going to see him next month.

--------------------
Craig

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justag
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ConnieMc, thanks so much for your response! It'll be wonderful if any of his current patients on IV treatments is willing to communicate with me, or speak out and share experience with the group.

My current insurance pays a big portion of IV abx (so far, with no restriction on how long the treatment goes), so I'd like to use it if possible. However, the $2000 a month for contract with Dr. J just to get his scripts/advice on what IV abx to try sounds intimidating.

Honestly, I'm not feeling better on IV (rocephin 2g + zithromax 500mg) for three months but I still have the PICC line. Actually I now have more fatigue, worse sleep, and worse appitite compared with when the symptoms first came back in November 2007(could be this disease itself or some side effects). I responded very well to oral abx April ~ August 2007 and went into remission with NO symptoms left. I was like living in heaven during that time...

Again, thanks for sharing your experience with us.

[group hug] [group hug]

Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
justag
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http://www.lymemed.nl/discussie/point&counterpoint.pdf

this article was one of the suggested readings listed in Dr Burrascano's 2005 treatment guidelines.

I just contacted Dr S's clinic in SF (he's the first author of this article) and his staff is not aware of any additional charges related to IV abx prescriptions...

Can any patients of Dr. S share IV abx experience?

Thanks!! [group hug]

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stella marie
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Justag,

I currently see Dr. J but have never done IV abx, oral meds only. Please look over your contract to see just what is included in his fee and update us when you can.

Will the fee include you seeing him once a week for an office visit and a look-see / cleaning of the pic line site?

I can say I'm happy w/ the practice but then I've never done the IV meds.

[ 16. April 2008, 08:12 AM: Message edited by: stella marie ]

--------------------
Stella Marie

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lou
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Considering the trolls who read this forum and use information here to persecute doctors, this kind of detail could result in your having no doctor who will treat you for any amount of money. I feel that comparing notes on charges, treatments should be done by private messages.
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Lymetoo
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quote:
Originally posted by lou:
Considering the trolls who read this forum and use information here to persecute doctors, this kind of detail could result in your having no doctor who will treat you for any amount of money. I feel that comparing notes on charges, treatments should be done by private messages.

I was thinking the same thing!!! you might want to remove details or the entire thread as it stands now.

You don't want to "lose" this doctor.

--------------------
--Lymetutu--
Opinions, not medical advice!

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bettyg
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justag,

i agree with lou and tutu; this should be discussed OFF THE BOARD.

i also agree with tutu's suggestion to delete the entire thread! copy it for yourself before you do it....

to delete entire thread, go to your 1st post, click on paper/pencil icon,

go to top left corner, and click DELETE POST, HIT ENTER, AND IT'S GONE!

thanks; too many specific details on here for a dr. forced out of NC to come to SC due to health dept. charges!

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METALLlC BLUE
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Personally, I think that's an unreasonable price to charge. In-fact I think the price many Lyme Specialist charge is unreasonable. It's outrageous. We're being financially raped. I've met some fantastic Lyme Specialists who charged reasonable fees. I'm not sure of the reasoning for such high costs. Maybe I just don't fully understand, in which case educate me please, because I'd like to know!

My Lyme Specialist is very well known, exceedingly well known, and he only charges $125 dollars for the first appointment, and all others. I would say you get what you pay for though, since he's often not accessible because he has a massive patient load! You get barebones care from him. Antibiotics, and occasionally one or two lines of advice by e-mail or phone for free if you have questions. He didn't make me get "in-house" IV. He let me choose a local supplier for the supplies, and even for the nursing agency out of my local hospital to keep my PICC in order. He let my local provider manage the treatment as long as the specialist prescribed it and was responsible for it.

This is not acceptable to me, and we need to do something about this. As patients it seems almost everyone is against us! The insurance companies the doctors who "won't" treat Lyme, and possibly indirectly via cost, some of our own doctors! Now I don't think it's malicious, I think there is a reason, but it's just hard to justify.

You can be a great doctor, that's fantastic, and you can give people their lives back -- terrific, but many of us can't afford it! We're discriminated against! I'm on SSDI and I only get a very low amount of money that barely covers my rent, car insurance and access to the internet (Yeah yeah, I know...the internet is not necessary, well I say to hell with you! Yes it is necessary, so I have access to information so I don't die! And don't give me that B.S. about using the "free" public library instead. You try finding "good" information on Lyme and co-infections there, because I sure didn't see any. And don't give me B.S. about "free" support groups for Lyme locally. We all know most of us don't even have groups locally, and those that do see each other once a month, nevermind those who are too sick to attend" I'm going to start one though!

Let's keep writing and supporting these bills to get government help and to get local support! This wouldn't be happening if the insurance companies covered us adequately and or we had universal coverage. It wouldn't be happening if more doctors were available to treat us. No one can charge us to write our letters and make our phone calls! (Well except for stamps and your monthly phone bill)

People may be angry about me saying this, but it's how I feel!

[ 16. April 2008, 06:02 AM: Message edited by: METALLlC BLUE ]

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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heiwalove
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hey metallic - thanks for saying that - i actually completely agree with you.

--------------------
http://www.myspace.com/violinexplosion

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aklnwlf
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Hi there Justag,

I'm going to pm you. I'm no longer a patient of Dr. J's but did his protocol in 2006 for 16 weeks. Sending the info privately.

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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cottonbrain
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I think it comes down to this:

if you trust your doctor's judgment and expertise, and his ability to make you well, then you are in good hands.

If you have ANY misgivings that the doctor does not clear up, then run the other direction with one hand on your wallet.

I saw Dr J twice and could not afford his IV treatment. I am now seeing a new LLMD who i totally trust and respect. He is also waaay cheaper.

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notkrazybrian
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up
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WildCondor
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What the &^%&*^&* is that fee for? Some kind of liability retainer in case your IV line gets infected and he has to call the ER? Some kind of protection against lawsuits? This LLMD has been burned badly before so it may be some protection thing? But making the patients pay???
Find out what that is for exactly and let us know. Some of these things these doctor's are getting away with boggle my mind to no end. There comes a point where you really have to wonder if they are benefiting off vulnerable Lymies, and it's borderline predatory! I understand consultation fees, but these excess feees seem very unethical to me.

A true compassionate LLMD would not charge unnecessary fees to patients on disability who cannot even afford to pay the co-pays for some Rx drugs. The $700-$1,000 initial visits in most LLMD offices are enough to force some patients into a life of disability because they cannot afford to get the proper care. I was told today by a desperately ill patient who is also desperately looking for an LLMD (not the one in this thread) that she contacted one LLMD who is highly public and he wanted to run $16,000 worth of testing on her! That is just a total outrage and he is clearly only doing it for his own research purposes and not for any benefit to a sick and suffering destitute patient. How outrageous!

Some of this $$ is necessary, but there seems to be a surplus of supplements and tests ordered when some LLMD's should simplify things and Rx the vital essentials, antibiotics and supportive measures. The rest is extra, and in many cases unnecessary! You can probably do just fine on oral antibiotics!

Be careful folks!

[ 18. April 2008, 03:49 AM: Message edited by: WildCondor ]

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kbholley
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I am a patient of Dr. J in SC, contact me at my e-mail address, or on my myspace acct. it is www.myspace.com/ohlymie, and my e-mail address is [email protected]

I have never heard of a $2000.00 per month contract. I pay for office visits and the IV abx through his office. Any tests he orders go through a local doctor that works with him and my insurance pays for the test.

Since he doesn't accept insurance, the do provide a form for you to file an out of network claim with your insurace company. I have had my picc line in since Feb 29,2008, and I have no complaints about the doctor or his care. I have a complaint that he doesn't live in florida. So I have to travel to SC.

Best of Luck

--------------------
OK...I'll play your silly games.

Finding my happy place.

Brenda-Lee

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justag
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Sorry that I didn't update this thread with the details of that $2000/month contract...I felt too tired of all this, and wanted to take a break. And I had my PICC line pulled out last Friday.

My case is different with kbholley because my insurance covers a big portion of IV abx, so I don't need to buy from Dr. J, and my guess is that's why I was asked to sign the contract if IV is my route.

I'll get a hold of the contract this weekend, and pls. PM me if you want the details. thanks!

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SL10
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Individuals already post their medical experiences with their doctor's - what's the real harm in posting their financial experiences if they want to?

Unlike their medical treatment, there's no risk that they're going to be persecuted for what they charge patients.

As has been mentioned earlier, some LLMDs charge fees that put them out of reach for those with limited income. I think having the financial information out there helps all all understand the range.

Anybody quoting information from a contract however, should make sure that there's not confidentiality agreement buried in there - which then might raise other questions....

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SL10
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Individuals already post their medical experiences with their doctor's - what's the real harm in posting their financial experiences if they want to?

Unlike their medical treatment, there's no risk that they're going to be persecuted for what they charge patients.

As has been mentioned earlier, some LLMDs charge fees that put them out of reach for those with limited income. I think having the financial information out there helps all all understand the range.

Anybody quoting information from a contract however, should make sure that there's not confidentiality agreement buried in there - which then might raise other questions....

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WildCondor
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Totally, thank you for clarification.
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Aniek
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This is a general comment about doctors charges. I do not know what the specific charges discussed here are, but it is to help answer some questions raised here about why LLMDs are so expensive. It is not about the specific charges raised in this thread.

Physicians have to pay their own salary, the salary of every person working in their office including nurses and administrative staff, liability insurance, rent, equipment costs, supply costs, and administrative costs.

In the US, most physicians charge about $100-$150 for a regular appointment, which ranges from about 10-15 minutes. Specialists charge well voer $200 for a visit in that time period. (I am talking charges without considering negotiating discounts with insurance companies)

Many LLMDs who charge hundreds of dollars for a first appointment spend at least an hour with that patient in the first visit. That is why the visits are so expensive.

If a doctor is charging $500 for a first visit and spends an hour with the patient, that is $125 for every 15 minutes which is pretty standard. What is not standards, is that doctor is spending a full hour with the patient.

In addition, many of our doctors are putting their medical license and livelihood at risk to treat us because many state medical boards do not recognize long term antibiotic treatment as a standard of care for Lyme. If a doctor was trying to be predatory, there are other illnesses that are not under as much scrutiny as Lyme.

--------------------
"When there is pain, there are no words." - Toni Morrison

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Tracy9
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Thank you, Aniek, I was going to say the same thing. It really angers me when people say LLMDs charge outrageous prices, when if you do the math it is the same as any other physician, with a hell of a lot more risk.

My LLMD charges $625 for the intial one hour appt, and $300 for every half hour appt thereafter. It is TOTALLY in line with what every other MD charges, absolutely. He is definitely not making a ton of money here, he wears worn out jeans and is the most unpretentious doctor I've probably ever met.

My Primary care doctor's office (part of a clinic) charges about $250 for a 15 minute visit. I actually think that would make my LLMD cheaper than my PCP!

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NO PM; CONTACT: [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.

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Sojourner
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$499 for about a half hour at my husband's completely (benignly) inept neuro in the Chicago suburbs. Of which 15 mins (at least) was spent listening to his plans for his Baja California sailing trip. [loco] Oh yes, so worth it! [puke]

Good thing insurance covers that puppy, and hubby is forced to go for his job.........great health care dollars spent there!! [bonk]

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nclymelife
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This is my second day on this site but knowing the charges and expense of LLMD's helps along with the treatments. I to am struggling on financial issues along with treatment. I believe this is helpful and anything in more detail can be PM. Thank you for all your comments I live in NC where doctors do not believe in Lyme although within just one day on this site i have found more doctors in NC hopefully i can find help with one of these. Thank YOU everyone for your aggreements and disagreements. If we can't agree to disagree then we will never get anywhere in life
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