I urgently need the name of a LLD who is also an infectious disease doctor. My daughter's short term disability provdier wont continue her disability becuase her current doctor is not an infectious disease doctor! She needs to schedule (not necessarily have the appt) by April 1 to continue on disbaility. On top of her horrible herxing she doesnt need to lose her only source of income so i really appreciate any advice an drecommendations
Thanks I dont know why UNUM is insisting that the doctor be board approved in ID. She had an appointment yesterday with an ID who looked at her paperwork then refused to even see her, gave her back her co-pay and told her he would not waste his time. . She was so upset she couldnt even speak I got referrals in DC and MD from ILADS but there are only two in 90 mile radius and I am afraid dr in DC wont be acceptable to UNUM because he is very outspoken and "controversial" so now she will lose her job, her only source of income and her faith in the world, she continues to be too sick to get out of bed most days...
"I dont know why UNUM is insisting that the doctor be board approved in ID."
Probably because there is a raging war in the medical community over Lyme and how to diagnose and treat it. The original docs who identified Lyme are still practicing medicine, and they are bigwigs in the world of infectious disease (ID). The main voluntary group for ID docs is the Infectious Disease Society of America (IDSA), and the IDSA has treatment guidelines that ID docs usually follow, esp w regard to controversial ailments like Lyme. Docs outside the ID specialty (like GPs) also tend to look to IDSA treatment guidelines, because who should know best, right? Yes, the IDSA. Infectious Disease is in their name, so they must know! (Not.)
Following IDSA guidelines in treatment of an illness is a very defensible and prudent thing for docs to do, because they can get in a heap of trouble for doing wacky things that harm the patient, so the docs cling to accepted standards. Perfectly logical. Except when the IDSA is wrong, as I believe it is about Lyme. (But I'm no doc, just a happy Lyme survivor.)
There are indeed quacks in the medical field who have some very questionable approaches to Lyme treatment -- you can find some of them discussed here [no names of course], like a nearby post about doc who wants someone with Lyme to take months of vitamins before beginning to treat with medication. Lyme is the wild wild west of medicine, so there are bound to be wackos and charlatans, and mainstream medicine thinks ILADS is full of wackos.
So from your insurance company's point of view, not supporting ILADS docs is sensible, otherwise they could be paying for witch doctors, which IDSA says ILADS docs are. And out of this malpractice cases are born, negligence law suits, all sorts of stuff that is bad for business for everyone.
Many of us pay or have paid out of pocket for treatment our insurance companies will not pay for. Sometimes the ins. co. will reimburse after treatment rather than approve ahead of time, sometimes not.
My suggestion would be to get in touch with ILADS and tell them you need an IDSA member for insurance reasons, and do they have any on their roster who are near you. The answer may well be no, but it can't hurt to try.
And about your daughter losing her job because she is ill, there are laws against that sort of stuff. Discrimination against the disabled is a legal no-no. There are hotlines for questions about things like that, but better would be a brief meeting with an employment lawyer (aka labor lawyer) who represents plaintiffs and get an hour's worth of advice, but it's up to you. There may be hotlines you can call that will give information too, either free or for a modest fee. You tell them the situation, they tell you what the law says and what the outcome might be. That could be a first step to get a little advice, then you will know what your daughter's options are. Then if necessary, hire a labor lawyer to advise your daughter and deal with the employer.
Nobody wants to go there lawyer-wise -- being sick is bad enough without getting lawyers mixed up in it -- but I know someone that this happened to, and it worked out fine without too much hassle.
About the outspoken LLMD, maybe go see the other one. But if the outspoken one is the only or better choice, I don't know how seeing a particular doc can get your daughter fired. Her employer can't really call her in and say 'Our insurance company says you met with Dr X, and he has a loud mouth, and so you're fired.' Doesn't work that way. I don't know how the employer would even have access to her medical records to know what doc she was seeing.
But you need a game plan on how to deal with the employer now, so that they don't have an excuse for firing your daughter for not showing up and not having medical justification for the absence. At a certain point, the employer has to do something about an employee who doesn't show up and doesn't have a dr's note saying why and writing her out on disability.
So DO talk with a lawyer very soon for a game plan, while pursuing medical advice. Both are important. Your daughter is lucky to have you looking out for her --
There are also laws about being able to take medical leave (FMLA is the federal law named the 'Family Medical Leave Act') that protects people who go out on leave for medical reasons, and there may be state laws that add to FMLA protections.
Thanks for your guidiance. Yes we have been paying out of pocket for all treatments since february when the doctor treating her for hypothyroidism did more blood work as she was not improving and found the antibody for babesia-- this quest for a new doctor is purely for the disability insurance company and it so baffles me that a disability insurance company can dictate which doctor you see... and it baffles me even more that a doctor would refuse to see her -- he could have explained his poistion and then offered a different diagnosis for why she is completely disabled...Unfortunately her FMLA has run out (she has been on disability since she was hospitalized foralleged "pancreatitis" in december and at this point it is perfectly legally to fire an employee who can not perform the essential job duties (with or without accomodation). An employer is not bound by the ADA to keep an employee who can not work due to a disability. I can pay for her medical bills, but she needs the disability to pay her expenses and its such a vicious cycle. the scary part is that people who are so disabled and have such brain fog really dont have the capacity to figure out how to navigate in this horribly broken system..... She has an appointment in DC next week (on her 28th birthday) and we just cross our fingers that UNUM will accept his dx. They stated on the phone they woudl so long as he is an ID.... prayers needed...
I am no expert in this stuff, but I'm assuming that the disability policy is written to exclude the opinions of docs Unum doesn't approve of in order to keep people from finding a clueless/crooked/wacko doc who will, on cue, swear that little green Martians are afflicting the ill person.
If the doc you are going to in DC is not an ID doc, then you may have inadvertently created one more hurdle to getting the situation turned around. I don't know if Unum is within its rights to demand an IDSA-member doc, but assuming they are, and knowing the reluctance of IDSA to diagnose Lyme, you are taking a risk of an adverse decision. That would be one more hurdle to overcome, with not one but two adverse decisions by Unum, and at some point, they will say your appeals are at an end. It may be written into your policy.
Putting Lyme entirely aside, having a babesia diagnosis should be worth something. 'Babs' is related to malaria, which is a serious illness. I wouldn't overlook that as an important factor.
To be blunt, just because it doesn't make sense that Unum demands an ID doc's opinion doesn't mean that it won't be held against you if you don't produce the requested ID doc's opinion. Unum is not in the business of paying for disability; Unum is in the business of not paying when it doesn't have to.
Unum has already said no once, and has asked you to produce what they consider a qualified MD (an ID doc) to say that your daughter is disabled. If you don't produce such a 'qualified' MD satisfactory to Unum to confirm disability, then I would expect the decision to go against you.
Therefore you may need to find a doc who will pass muster with IDSA, regardless of how useless it seems to you. That you don't agree with Unum's approach is not going to change Unum's mind.
(Side thought: The focus should perhaps be on the level of your daughter's impairment, not the cause of her impairment. A labor/employment lawyer would know.)
You sound very well informed, and I hope you are working with a lawyer. If you are not, I would *strongly* suggest you get some legal advice from a labor/employment or disability-type lawyer before going into that meeting, because if you get denied, then you have one more hurdle to go over, if there is even another level of appeal to be had.
Seriously. Finding a lawyer who specializes in representing employee/plaintiffs in these matters is what I would do, and before the hearing -- and don't delay. One more adverse decision is just one more problem to overcome, and at some point, the appeals process at Unum will run out. If you can reschedule the hearing and need to in order to get your legal advice lined up, I would do it.
"Crossing your fingers" that UNUM will accept the new doc's diagnosis, unless that doc is an ID doc, is not what I would do personally. Best wishes -- let us know how it goes.
If you're going to see Dr. J in the D.C. area, he is the only ID doc I've heard of who treats chronic Lyme. The IDSA went after him when he tried to get the leadership to change the guidelines. The medical board in NC found that he overdiagnosed and overtreated Lyme patients, and while they allowed him to keep his license, BC sued him for $100 million for fraudently billing them for unnecessary treatments. He was forced to declare bankruptcy and shut down, which is just what the IDSA wanted. (As shown in the movie "Under Our Skin.")
He eventually relocated to DC where he is practicing. His specialty is ID, but I am confident he isn't a member of the IDSA. The question for UNUM will be, what is their definition of an ID doc. I suspect they require an ID doc to acknowledge disability for Lyme because it is extremely difficult to find an ID doc that will acknowledge that Lyme can disable a person, which makes for few Lyme patients they have to pay for.
If UNUM won't accept Dr. J's diagnosis, then she is in effect, undiagnosed. What kind of doctor do they require to certify her as unable to work in the absence of a diagnosis? They certainly can't punish the patient for doctors' inability to find answers.
Also, Babesia in and of itself can be disabling. Positive antibody tests for Babesia should be sufficient for a diagnosis of it. Most Babesia patients test false negative.
Thank you for your comments. When she spoke with Unum she gave them DC doctor name and they put her on hold,came back and said so long as he is board certified in Infectious disease it is fine. The challenge is not a legal one -- unum has not denied her claim, there is no hearing, and lyme has never been written down as her disability nor is it in any diagnosis.... The challenge is that UNUM wants her to be treated by an ID doctor (because they have seen the babesia in her blood work) and she went to the one in her insurance network and he refused to even see her, once he read her blood work he gave her back her money and told her he could not help her... the challenge is for disability purposes she needs to be seen and treated by an ID doctor and in order to get well she needs to be seen by a LLD because she does have babesia antibody and all symptoms of lymes. Thus my original question -- does any one know a LLD ID....and sadly I have learned the answer is generally no, except for the DC dr...and as I stated above I am aware of the controversy .. so we will see if UNUM accepts the DC dr's paperwork. and if not we need a plan B and having a plan B is hard when ID doctors refuse to see her.. yes at some point we can intervene with a lawyer, but as a lawyers practicing for over 24 years, I know that we are not at that place yet. The challenge is proper medical care versus satisfying a disability insurance company .. i am just outraged and would love to ask UNUM to pick a doctor, any doctor they chose, and have that doctor take care of her for 24 hours ......so today will be spent coming up with plan B since we have a 2 week window ..
If what you need is a confirmation of disability, and if your daughter is documented as having babesia, I would think even an ID doc could be on board with writing her out on disability.
To my knowledge, babesia is not as controversial as Lyme (and babesia may not be controversial at all, not sure), so seeing an ID doc for purposes of getting confirmation satisfactory to Unum -- wholly apart from Lyme -- may be helpful for establishing eligibility for disability.
Then you can go off and see whatever doc you like for treatment, yes? I don't know the ins and outs of all this, so just speculating.
Thanks, i think the last ID doctor who literally refused to see her after he looked at her file really threw me for a loop... the challenge is how to have her see two doctors at once -- one for disability and for for treatment,,,, its all just so absurd!! Apparently there must be IDSA guidelines for babs and the fact you have antibodies is not enough.. otehrwise I really cant explain that doctors behavior last week,,, ( so its nature to have that in your body? ha!) I really appreciate the advice Jackie, its so hard to figure all of this out,,,
Is it *required* that the doc who certifies disability also has to be the treating doc? I've never gone on disability, so don't know how that works.
If they can be separate docs, then perhaps the certifying doc can be checked in with periodically as the ins. co. requires to re-certify. Or, if the cert.doc won't cooperate, then at that point find a new certifying doc, perhaps.
I'm rather focussed on avoiding a disability denial at this stage -- if you can turf that battle over to the future (whenever the next certification needs to take place), then you've bought yourself some time.
I too had Lyme and babesia, and the babesia treatment was rather straightforward, unlike Lyme, which can hide from the medication and mess with the immune system. I felt better when it was 'just' Lyme, so your daughter's condition may improve when it's down to 'just' one infection.
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Thanks Jackie, How long did it take you to get down to "just one"? She has been on meds about 2 months. She has probably had only about 3 "good "days in that time period when she could get out of bed and eat etc... .
My treatment schedule is rather haywire because of a bad reaction I had to something, nothing to do with the meds exactly, but a side effect (see below). Every patient is different, and the wise doc doesn't do one size fits all. Someone else in my family was also treated for the same two infections, and sailed right through.
So my meds schedule below is squirrel-y. A good Lyme doc reassesses at every appointment and makes adjustments as needed.
I was treated for babesia first: 4 months of azithromycin and atovaquone (those are the generic names)
Then for Lyme: 5 months of clarithromycin and cefdinir
Then a 2 month break (I had a bad reaction to some yeast-based probiotics I was taking on doc's instructions -- turns out I'm yeast-sensitive; rare, but it happens
Then 4 mos of azithromycin and flagyl (for Lyme)
So total medication time, just over a year. But everyone is different, and especially when it comes to teasing out the co-infections. I know someone who sailed straight through a similar treatment plan with no problems (because of no yeast sensitivity like mine).
I was "lucky" that my tests showed babesia right up front, because sometimes it (and perhaps other infections too) can lurk and not show up on tests until some of the other co-existing infection(s) are beat down. Others here can speak better to that.
As to which meds, there is no one single approach or 'protocol' that is known to work, and a wise doc stays nimble and responds to the patient's response. Some docs are locked into a favorite treatment regimen, but I don't think the bacteria have signed off on that approach. The interplay of co-infections is a particularly vexing issue that takes a wise doc to deal with.
About your comment that your daughter has only had a few good days ... that's not surprising to me. There's no quick turnaround with Lyme, to my experience and knowledge. It takes time, and the improvement is slow. The body is rundown and messed up after the battle between the immune system and the infections, and there is no *quick* turnaround in anyone I have known of.
Slow and gradual improvement is normal, and then the body has to rebuild after the battle. Not unlike having a baby -- the birth may be over in a day, but it takes months to really recuperate.
Best wishes -- do stay in touch and let us know how things go --
Your daughter is blessed to have a Mom who can and will navigate the system for her. I am sure with you looking out for her, she'll be okay. Did you call Dr. J's office to confirm he's board certified in ID?
If not, then asking UNUM for a doctor to see makes sense. You only need a doc to confirm that she's disabled, not that she does or does not have Lyme. Any ID doc should be able to determine she's too sick to work and that she does indeed have Babesia antibodies. The challenge, as you've found, is to find one willing to do that.
I would guess that the doc that refused to see her is too sensitive to the controversy around tick borne diseases and doesn't want anything to do with them. Unfortunately, there are a lot of doctors out there like that. They've seen others get nailed for stepping out of bounds (outside the IDSA guidelines) and are afraid of the scrutiny that might follow if they get involved. Some won't even see a Lyme patient with fully positive blood tests. They see it as a no-win situation. They can't treat the patient more than a month, and the patient will be upset when that month is over and s/he is still sick.
I was too sick to get out of bed most days, and in pretty bad shape with severe pain, digestive, neuro, and cognitive problems. I was sure I'd feel almost well in a year, but after 11 months and stalled progress, we finally figured out I had Babesia. I'm nearly 5 months into that and still feeling crummy. I certainly couldn't work full time at this point. Your daughter is a couple decades younger than me, so she should bounce back faster than I did, especially if there's no coinfections to slow the process down. But if I'd been working, I would have been out on disability by July 2011. I suspect the earliest I could consider full time would be fall of this year, which is in excess of 2 years. I don't mean to be discouraging, but I don't want you to think she'll be back at work in 3 or 6 months. It will likely take longer than that.
What's happened to your daughter shouldn't have happened, but it did, and it happens to a whole lot of other people, too. Someday soon, when the crisis is past and your daughter is well, I hope one or both of you add your voice to the cry for change.
In the meantime, I hope you get the UNUM approval with Dr. J's paperwork. Thank God for doctors like Dr. J.
I'd completely forgotten about Sam Donta until the post about Dr. Burton Weisbrun's book triggered my memory.
I don't know where you're located, but both Dr. Sam Donta (near Boston) and Dr. Weisbrun (Wisconsin) are infectious disease doctors who know Lyme for what it really is. I believe Donta is still practicing. I don't know if Weisbrun is.
If you can't get what you need from Dr. J., you could check out these docs and ask if they're willing to certify disability for a patient who has Babesia and probable Lyme.
Thank you for your comment. His office says he is ID certfiied so I will hope it works... Plan B is in effect and we have an appointment with another ID Dr in fairfax that is in her medical plan and we will see how that goes.. I will need to pay out of pocket for Dr J and if we need to she will see two doctors one for her proper treatment and one for her disability... should interesting. My daughter is already talking about being a voice for change when she gets well, even wants to change the focus of her graduate studies if she is ever abel to return to school. She happens to live in an area with the highest infection rate in Va, yet.... yes its time for a change,,, and one way or another we will be part of it,,, thank you all for yoru encouragement it means alot My daughter had a rough time in her early 20s and had finally gotten her life together, had a fulltime job at a prestigious research facility, straight As in grad school, and she lost it all to this horrible mess,,, I am just trying to help her see that she can overcome this too, but it is very hard...
Appointment in DC went well, never saw dr ($650 for a PA appt??) but I did like the PA approach -- lets get your pain under control and you able to function a bit before we give you more antibioitics. She thinks her gallbadder is non functioning (ironically where all of this started two years ago...) and ordered a few tests and a brain scan. Most importantly my daughter felt FINALLY someone understood her and cared and believed her! So the next day we go to the ID that the disability insurance wants and she did atleast see us unlike the last one. She said I have no idea of what is wrong with you you should see an immunologist and rhemeutory person, gave us two names, and said I have seen babesia in the hospital and those patients feel like they are dying, at which point my daughter stomped out in a rage. Her boyfirend explained he quit his job to take care of her full time and she feels like she is dying and nicely scolded the doctor.... ID dr said she woudl not fill out disability insurance forms because it would just hurt my daughters case... So, no plan B for disability/ So its clear in her blood work AT SOME POINT she had lyme and babesia as she has soem antibodies, but "legally" not a current infection.... so even CDC states if NOT TREATED it gets worse... she was never really treated except 2 cycles of 2 weeks.... atleast Dr J's clinic has a plan and is addressing her most urgent issues.... i will just go broke paying for it... oh and when she called to schedule the tests she used DR J's name (no one told her not to) and the person had a fit starting yelling at her that she would NOT schedule the test that he can not order tests... wow... so she gave the PA name and got it scheduled. Now I want to know when did IDSA decide it trumps the AMA standard of do no harm and treat patients with respect and dignity?? this weekend will be spent writing up the case for a lawyer should disability be denied. It would be ironic if they deny the opinion of the one doctor who actually has a plan to try to get her back to work... I am officially exhausted. How can someone ill handle all of this?
I am so sorry you both had to go through all of this. It has been very frustrating for most of us with doctors who don't understand and my fiancée can't understand how most doctors can be so unhelpful.
I actually found an ID doctor who is an LLMD here in FL. If you want the info, just PM me.
Can the ID doc or another doc write up the disability forms without an official diagnosis? Just based on symptoms and history? Or call it chronic fatigue or fibromyalgia -- if the forms need a diagnosis.
Both CF and fibro get respect that Lyme doesn't, oddly enough.
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