posted
I have not yet been diagnosed with lyme,however, I have been sick for the last 12 yrs and only recently learned the symptoms of lyme disease. Every symptom I have is a lyme symptom and every checklist I've filled out has had at least 3/4 or more checked, so I feel like it is worth it for me to go see a LLMD since noone else has been able to help me all this time.
I don't have a LLMD close so I have to travel about 4 hrs to go see Dr. C in FL. I was hoping someone can help me before I attempt to make this appointment. I want to be prepared before I call, is there anything I need to know or do before making this first appt with Dr. C.? Anything I need for the call itself, not when going to the first appt, but when making the call for the first appt?
My concern is that if I don't have the right answers/info when I call to make this first appt that they won't take me as a patient. Or am I making too much of this and will this be just as easy as making an appt at any other Dr.'s office?
I would really appreciate any help you all could give, and if you are a patient of Dr. C in FL. and could help me I would really love your 1st hand experience!
Thanks, Lisa
**** moderator's note - edited to remove doctor's city ****
posted
Hi Lisa, I have not heard negative about Dr C except for possibly not answering patients question or concerns over the phone.
I do believe he likes or requires you to have a PCP in your area willing to go along with his treatment protocal. If you can not find one, you could call his office and they may have a list of PCP's in Ft Lauderdale area they have worked with before.
Try posting under seeking a doctor. best wishes
Posts: 747 | From Utah | Registered: Apr 2010
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posted
He will require that you have a referral from a primary care physician. You might want to call his office and ask if they can refer to you such a physician if you don't know any that refer to him. Of course, you'll have to visit the PCP first and periodically during your treatment. The PCP I went to doesn't want to refer to Dr. C anymore. It's a lot of paperwork, plus any other reasons he might not have wanted to divulge.
Between finding a referral doc and getting on Dr. C's schedule once you have the referral, it'll probably be at least two months before you have your first appointment.
Once you become a patient, you will have to pay a fee for phone calls with the doc or assistant. They will disclose that to you at your first or second appt.
Also be familiar with insurance companies' policies in Florida regarding how long they will pay for IV abx treatment. Most of them stop paying after six weeks. If you can't afford the $1,200 a week on your own after that for an indefinite period of time, that means you have to discontinue treatment. And of course, starting and prematurely stopping abx treatment for Lyme will probably make you worse in the long run.
If you seek treatment in other states, particularly up north, the insurance companies (according to state laws) will cover more treatment. There are many people in Florida who see out-of-state doctors for Lyme treatment.
When I asked this doctor if I should check first with the insurance company (prequalify) so I'd know how much or how long they'd reimburse, the doctor recommended against this. He said (paraphrased) don't alert them that you're going for Lyme treatment. They'll cut you off for sure. But if you just go for the treatment and submit the claims, you might be able to slip under the radar and they might keep paying. For me, I didn't think it was a good gamble, to go for the treatment, and then HOPE that the claims analyst wasn't paying attention (over and over) when I submitted the costly claims.
The PCP who referred me to Dr. C told me that several people he referred there were cut off by their insurance companies after 6 weeks. You don't want to "dabble" with abx treatment for Lyme. If you're going to do it, you have to be in it for the long run. Just trying it out, then backing out midstream for whatever reason is not a good thing to do.
Sorry that I don't have better, more encouraging things to tell you. I'm not trying to talk you out of anything. I'm simply saying, make sure that you go into this with your eyes WIDE OPEN. Florida is simply not the best place to be if you have Lyme.
From your post it seems as though you haven't been tested. I'd recommend that you get at least a Western Blot from IGENEX labs in CA. Don't substitute other labs because they're simply not as accurate. Then have a competent Lyme-Literate doctor interpret them. Lyme diagnoses are not scientific, they're clinical, so you have to have a competent interpreter. You don't have to go all the way to Tampa just to have your test results interpreted. There are other Lyme literate doctors in south Florida. Post on the seeking a doctor thread to get contact info on docs in south Florida. After your local doctor interprets your test results, I recommend that you call IGENEX and ask to speak to the doctor there who can also give you his opinion on the results.
Good luck to you. I wish you a successful recovery.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
As chaps said, they will require a PCP to provide a written referral specifically to see him. When you provide the referral and answer the questionnaire they provide you, and the doctor reviews that, then they finally set up the appointment.
So, to be prepared for the call, understand they do have quite a procedure to get started. But, they'll mail you the forms for you to work on. There is no need to fear calling the office, though. It's not going to happen that you'll be rejected because you don't have answers or say the wrong thing or whatever.
They will ask you what insurance you have and, probably in the case of many insurances, will note that he does not accept that insurance. You may have to pay as you go for his office visits, and then submit to insurance, if that happens.
Michael
Posts: 1927 | From se usa | Registered: Mar 2010
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
chaps,
Are there really certain states where, if you live there (or are treated by a doc there?), the ins.co. has to pay for lyme treatment, even though, in other states they may consider the procedure (IV abx) experimental? Does anyone know which ones?
I am an example of getting cut off too early, I got 8 weeks covered.
Michael
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Michael, all I can give you is hearsay, but I heard that in Rhode Island, insurance has to pay. Maryland is a possibility, too. There probably aren't many people outside of FL reading this thread, but I'll bet if you start a new thread asking about what is covered in other states, people from those states up north will answer.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
From all I've heard, he sounds like a whipbomb of a LLMD!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I see Dr. C in Tampa. Pretty much what was said above by Chaps is true. There are requirements to being a patient, but I think he does what he does (making you have a PCP) for safety measures. One to so there is another doctor's name on the paperwork, and two because if you are coming from a long distance, he doesn't want you to have trouble with your PICC line and his office can't see it and help you.
If anyone wants to PM me about this doctor, I will do the best I can to answer your questions.
Posts: 893 | From Florida | Registered: Dec 2008
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Really need to know if I'm going to try to make this appt.
Thanks, Lisa
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I see Dr. C and while he does require a PCP to follow your case, I had no problem whatsoever getting an appt. within 2 weeks.
Phone support is little to non-existent. They always want an in person appt. when a problem arises.
He (Dr. C) has been cited in Dr. B's new guidelines in regards to rocephin. He treats hard and aggressively.
I have found him to be open minded, willing to think outside of the box. I don't believe that he believes that everything is Lyme..
He tests me for anything and everything that I ask for. Including all co-infections, viruses, IgG Subclasses....etc.
I would be a prepared patient. Go in with a printed history and all recent testing and labs. I don't think that you will be turned away...no worries there.
Please p.m. me with any questions.
Posts: 3975 | From usa | Registered: Aug 2007
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