posted
Hi all. I'm looking for an LLMD (again) in RI, CT, MA, and possibly on the edge of other neighboring states.
Some of my previous history was posted here back in 2009.
This time I have some very specific requirements:
- The doctor must not refuse patients who are on Medicare
- The doctor must be known to prescribe Bactrim in addition to other medications
- The doctor must be familiar with adverse reactions to Bactrim, desensitization for patients with a Bactrim allergy, and have an understanding of the blood and urine tests needed to ensure that kidney and liver functions remain normal
I haven't seen an LLMD since 2010. I was booted out the door because I qualified for disability and signed up for Medicare. I had just learned a month earlier when I was on Bactrim, Ceftin, and Biaxin at the same time that adding Bactrim obliterated a lot of my symptoms in less than a week when nothing else made a dent for three years. I also learned that I'm allergic to Bactrim and had to stop taking it to treat a rash from it.
My condition remained poor but relatively stable for several years, but has been going downhill very steadily for the past year.
I've contacted some potential new LLMDs and found that refusing patients who are on Medicare is somewhat popular. Like it matters what insurance I have since these doctors don't take any insurance anyway.
I've also seen a couple of other types of specialists who both explicitly agreed to put me on Bactrim again after reviewing my history and testing for lots of conditions, but in the end both completely changed their minds and refused to attempt to help me at all.
These other specialists think they're saving me somehow, but I'm more doomed every day without treatment. My condition has been steadily eroding my hearing and vision along with all of the old symptoms getting worse.
I've seen lots of new specialists in the past year just to check if any of the new and old symptoms have any normal explanation, and of course none of the doctors have a clue what's going on with me.
Thanks in advance for your help.
Posts: 10 | From RI | Registered: Oct 2007
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Nancy2
Frequent Contributor (1K+ posts)
Member # 95
posted
PM Sent!
Posts: 1487 | From New England | Registered: Oct 2000
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Thank you very much for the info Nancy. Your inbox is full, so I'm responding here.
I contacted their office last week and again this week. They will not help me because of the Bactrim allergy.
If you have any other suggestions in the region, I'd be very happy to hear about them.
Do you know if Dr. G's office in RI is closed? I haven't been there before, but heard they had money problems earlier this year, and when I tried calling the phone number was disconnected.
Thanks again.
Posts: 10 | From RI | Registered: Oct 2007
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Thank you very much. That's a different phone number (and location) so I'll try them again after the weekend.
In the meantime I've been refused help at another office in CT and am waiting on others in CT and MA to call back. Good times...
Posts: 10 | From RI | Registered: Oct 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Greg, there is a very important reason why lyme doctors have to refuse to take patients that have Medicare.
The reason is that if a person has Medicare and a doctor sees them, the doctor is REQUIRED to accept the Medicare payment as their full payment. This is Medicare law.
The only exception to this is if the doctor has "opted out" of Medicare. If a doc opts out, then he can see Medicare patients and charge them whatever fee he likes.
However, opting out of Medicare is a bureaucratic process that many doctors do not want to go through. It involves lots of paperwork, including presenting each Medicare patient with a notice that the patient must sign saying that he/she understands that the doctor has opted out of Medicare and the patient will NOT be able to file any claim with Medicare for his charges.
So, it is a lot of work to opt out of Medicare.
Hope this explanation helps you. I know a top notch lyme specialist who has opted out of Medicare, so she can accept you as a patient, but she is located in Washington, D.C. and has at least a 6 month wait to see a new patient. She only requires in person appointments every 6 months, so if you want her name, let me know.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote:Originally posted by TF: Greg, there is a very important reason why lyme doctors have to refuse to take patients that have Medicare...
Thank you very much for that information. That being the case, I wouldn't want to be seen by a doctor who doesn't think it's worth their time and effort to ensure they can see patients who are elderly and/or disabled and are on Medicare as a result.
For what most LLMDs charge compared to other doctors (when paying out-of-pocket), it can hardly be argued that it isn't worthwhile to make the effort to opt out. I mean seriously, is there a single LLMD that doesn't expect to encounter people like me who are so sick that they've been out of work and on disability for quite some time?
Anyway, I could rant forever about this since there are a lot of disreputable doctors of all kinds that I've encountered, but I really do appreciate the information you provided.
I have found some LLMDs who will see me even though I'm on Medicare, and they use Bactrim, but they all unconditionally refuse to put me on it. The search continues...
Going out to any appointment is a huge burden for my body, and that's just as a passenger, so at the moment traveling as far as DC is out of the question. However, under the current circumstances I'm happy to at least ask what their policy would be regarding the whole Bactrim thing, so I would greatly appreciate any contact info you can provide.
Thanks again.
Posts: 10 | From RI | Registered: Oct 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You speak about what a doctor should be willing to do without any relevant experience.
I once saw the terror in one doctor (not a lyme doctor) who was contacted by the Centers for Medicare and Medicaid regarding my husband's appointment with him and his opting out of Medicare.
Doctors have real horror stories to tell about dealing with Federal agencies and how they dig and dig and persist to see if perhaps a form was not filled out timely, etc. Then, they pursue the doctor relentlessly.
So, you really DON'T know whereof you speak when it comes to the subject of opting out of Medicare.
Have you ever had your own business? A doctor who decides not to take Medicare patients because of the nighmare that opting out of Medicare can be should NOT be considered disreputable or any of the other things you have said of them above such as:
" I wouldn't want to be seen by a doctor who doesn't think it's worth their time and effort to ensure they can see patients who are elderly and/or disabled and are on Medicare as a result.
For what most LLMDs charge compared to other doctors (when paying out-of-pocket), it can hardly be argued that it isn't worthwhile to make the effort to opt out. I mean seriously, is there a single LLMD that doesn't expect to encounter people like me who are so sick that they've been out of work and on disability for quite some time?"
So, what I am telling you is that I know great lyme doctors who have looked into it and decided it is NOT worth their while to opt out of Medicare because of the harassment that can come their way from the Centers for Medicare and Medicaid.
If you knew someone who experienced it, I doubt you would say what you have said above.
And, regarding Bactrim, I certainly can understand why doctors are not willing to give you Bactrim based on your history of getting a rash from it.
You may already know this, but I would like all to know:
"Bactrim may rarely cause a severe reaction called “Stevens-Johnson” syndrome which can be lethal if not addressed immediately.
This serious reaction is usually characterized by fever, flu-like symptoms, mouth sores, and often a skin rash.
My patients are instructed to stop Bactrim immediately if any fever or mouth and/or skin sores occur. The condition usually clears in the next 24 to 72 hours. However, if it worsens, the patient needs to seek emergency care."
This quote is from a book written by a lyme specialist.
Since this syndrome can be fatal, I believe you are going to have a VERY hard time finding ANY doctor who will give you Bactrim.
If anything happened to you once he prescribed the Bactrim, he likely could be sued and have his license taken away from him.
And, you could be dead.
That is too much to ask a doctor to risk. Instead, perhaps a top notch doctor like the one I am recommending could find another med that would do the trick for you.
I will send you her name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Getting contacted about possibly not filling out a form in a timely manner doesn't sound anything like horror or terror, so forgive me if I'm not remotely convinced by your argument.
Having personally been banned without explanation from an LLMD's office after a year of regular visits just because I switched to Medicare is truly horrible, but even that can't reasonably be exaggerated as being "horror" or "terror."
If you're wondering, that office was informed months in advance that my insurance would be changing. They kept hemming and hawing about how they may or may not be able to continue seeing me once my insurance changed, then refused to even call me back to explain the situation.
Maybe I still "DON'T" have a full understanding of the doctor side of the Medicare situation, but I certainly have a grasp of how the patient side of things can work.
And yes, I'm extremely well aware of the reactions to Bactrim that are possible. Doctor after doctor has eventually dismissed me because they can't think of anything else to try for treatment or testing, and I'm certainly not just talking about LLMDs. The only thing that ever worked was Bactrim, and it obliterated most of my problems in less than a week just before the rash started to develop. Of course, most of my problems returned after the Bactrim treatment was interrupted.
I've gone for years without RX treatments targeting my condition because the many doctors I've seen feel that they've exhausted their options in that area. When I've contacted new doctors and asked what treatments they use, it's always a list of treatments that have already failed
Yes, there are other antibiotics they haven't tried, but those carry virtual guarantees of permanent body damage, so those certainly aren't likely to be prescribed.
During the non-LLMD years I tried virtually every holistic protocol with absolutely no results whatsoever. However, my condition was relatively stable during that time, so there was no urgent need to consider RX risks.
During those same years I did find two non-LLMD doctors with excellent reputations who initially said they would put me on Bactrim again if additional testing and/or treatments were ineffective. Extensive testing to try to identify the infection (tick-related or not, to identify other potentially useful drugs) revealed nothing. Lack of information from testing led to lack of further treatment attempts aside from the usual offers for painkillers and other garbage.
Both doctors, in a very similar manner, said they wouldn't put me Bactrim again when everything was said and done. One, an infectious disease specialist, went so far as having me waste months making arrangements with a local allergy-immunology specialist to be checked at least three times a week during the desensitization protocol and initial treatment before pretending to the allergy-immunology doctor that she had never offered to put me on Bactrim. The allergy-immunology guy was left thinking I was insane as a result.
The infectious disease specialist eventually decided to stop lying, and it became apparent that another patient of hers (who didn't get desensitized, and most likely had very advanced AIDS) had most likely had a very serious, possibly fatal reaction to Bactrim. Because that patient wasn't treated properly, I couldn't be treated at all. She advised me to wait indefinitely for an alternative to Bactrim to come along.
There is, of course, still nothing on the market that works like Bactrim, nor have I found any indication that any such drugs are in development. There are a few substances the RX world has access to for testing purposes that have similarities to Bactrim, but based on the research I've seen they're all less effective and haven't been properly studied for safety.
My condition is rapidly deteriorating now and any treatment likely to work is worth trying. The risk of serious or any complications from going on Bactrim again is far, far less with the use of a desensitization protocol than it was when I was previously put on a full dose with no warning of possible complications. And yes, I read the documentation provided by the pharmacy, so even though the doctor (like most) didn't disclose potential side effects I was aware of potential reactions before the rash developed last time.
Without going into details, I can assure you that my current condition is not an acceptable state of living. A very small risk of complications or death is entirely acceptable at this time.
Thank you very much for the doctor's name in DC. I'll add her to my round of calls for immediately after the weekend.
Posts: 10 | From RI | Registered: Oct 2007
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