Spryte Posted January 31, 2023 Share Posted January 31, 2023 Maybe this is a JAWM, or at least a “be gentle with me” post. Or laugh, because after typing all this out, I’m kind of laughing. It’s all so ridiculous. Maybe this is just a vent and I’ll delete later, so please don’t quote. I have finally given in, cried uncle, and am going to a niche specialist in our area who might be able to help me with this years-long antibiotic resistant rUTI. The moment I’m off antibiotics I am tethered to a heating pad and in agony. I can’t continue like this. I have been on abx for at least two weeks each month, often more, for the last 8 months. New doc is two hours away with no traffic (hysterical laughter at the thought of no traffic). And she doesn’t take insurance. My initial consult will be $600, before we decide on treatment options. Those are going to be $$$$, too. I am crushed that this has become necessary. My whole life has shrunk to the length of a heating pad cord when I’m not taking abx. I’ve been in the hospital 12 times in 2 years, 12 CT scans, 2 colonoscopies, endoscopy, a boat load of other tests, seen local specialists and my not-so-local doc and osteopath, and take a billion supplements and meds each month. I’m de-conditioned and depressed. 15 years ago, I had a different antibiotic resistant infection—that one in my brain—that landed me unable do many things, I was basically in bed. That one took five years and a home equity line of credit to treat. I have immune issues and things tend to go chronic, and a gene mutation that contributes (my body doesn’t break down the protective barriers that bacteria try to make to hide from abx). This is all just horrifying. I can’t help but be afraid this will turn into another multi-year, very expensive saga. The specialist not taking insurance was just the icing on the cake. Sigh. Insult to injury. Kid heading to college, another kid heading to braces, and I was planning to start vision therapy for myself—finally!—to mitigate some leftover issues from the brain infection. Instead of VT, I’ll be doing whatever this latest specialist says, because who needs to see, anyway, if you can’t move? Gaaaaah! Being let down by the traditional medical community really stinks. 35 Quote Link to comment Share on other sites More sharing options...
happi duck Posted January 31, 2023 Share Posted January 31, 2023 (edited) Many (hugs) Just to clarify: your insurance won't pay or the office doesn't submit? We once used a specialist where we paid and then we submitted to insurance who paid us. More (hugs) Edited January 31, 2023 by happi duck 10 Quote Link to comment Share on other sites More sharing options...
Arcadia Posted January 31, 2023 Share Posted January 31, 2023 We have been successful with filing a claim under out of network and getting money back for providers who don’t take insurance. My husband’s whine is that my MRI hit the full out of pocket for the year and we have to pay over $3k. His employee health plan starts in January so the insurance says deductible gets used first. We are waiting for the bill from my provider to negotiate a discount. 5 Quote Link to comment Share on other sites More sharing options...
MEmama Posted January 31, 2023 Share Posted January 31, 2023 No advice, just lots of ((hugs)) 1 Quote Link to comment Share on other sites More sharing options...
cintinative Posted January 31, 2023 Share Posted January 31, 2023 No advice, but I am so sorry for your chronic health issues. 2 Quote Link to comment Share on other sites More sharing options...
Annie G Posted January 31, 2023 Share Posted January 31, 2023 No advice, but tons of hugs. And you’re not whining-you’re venting a very valid frustration! 2 Quote Link to comment Share on other sites More sharing options...
1234 Posted January 31, 2023 Share Posted January 31, 2023 When we used a specialist for youngest that didn’t take insurance we first petitioned the insurance company to cover (they wouldn’t in network) but we could still file out of network and get some of the money back. 4 Quote Link to comment Share on other sites More sharing options...
Spryte Posted January 31, 2023 Author Share Posted January 31, 2023 37 minutes ago, happi duck said: Many (hugs) Just to clarify: your insurance won't pay or the office doesn't submit? We once used a specialist where we paid and then we submitted to insurance who paid us. More (hugs) We can submit, so there is some possible they will pay part. My former experience with that was so poor, though with a different insurance company, that I automatically translated “you can submit” to “they won’t cover.” It makes me very happy to hear that yours covered the submitted claims! Thank you for that! 3 Quote Link to comment Share on other sites More sharing options...
Spryte Posted January 31, 2023 Author Share Posted January 31, 2023 Oh, this is good, hearing that several of you filed successful claims. Thank you! I will cross my fingers that ours is covered as well. 5 Quote Link to comment Share on other sites More sharing options...
kbutton Posted January 31, 2023 Share Posted January 31, 2023 14 minutes ago, Spryte said: We can submit, so there is some possible they will pay part. My former experience with that was so poor, though with a different insurance company, that I automatically translated “you can submit” to “they won’t cover.” It makes me very happy to hear that yours covered the submitted claims! Thank you for that! I think it has a lot to do with the interactions of various deductibles and OOP maximums. It stinks to have so much going on and not have it covered. It's bad enough when it's dental work that falls into that hole that isn't covered, but when it's for something to make you functional, it's just insulting. I hope this specialist is able to get to you set back to some level of normal without a lot of extra fees. If she orders testing and doesn't absolutely insist that it be at certain facilities, etc., I would try to get referrals to places that are in-network for you. That should help a great deal with cost. If you can request a case manager from your insurance, then I would consider trying that also--they can sometimes get things covered or find out how to do it the least costly way. 5 Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted January 31, 2023 Share Posted January 31, 2023 My experience has been like yours and it is never covered even with appeals showing the need and lack of covered specialists. I hope this doctor gets to the bottom of it quickly and with not many visits. Just remember to save all your receipts for taxes. 7 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 31, 2023 Share Posted January 31, 2023 Can I offer an out of the box solution in addition to my deep and sincere commiseration? In my own life it has been cheaper to fly cross country to see a specialist who is covered (doing telemedicine where I can between in person visits) than it has been to pay out of pocket. I see a hematologist right now that I have to print my weekly labs off for and photograph them to email since digital systems don’t connect from me to them. It seems absurd, but it’s better than digging a yearly $40k hole to climb out of, iykwim. Nods above to appealing through a nurse case manager for pre-approval. We have had a really mixed bag in submitting claims after the fact. I won’t do it anymore….especially now that even basic specialist visits are $2k a pop. 6 1 Quote Link to comment Share on other sites More sharing options...
bolt. Posted January 31, 2023 Share Posted January 31, 2023 Ok, I agree with you! A society that makes profits off illness... and makes greater profits proportional to the severity of the illness... and creates a system of patchwork "insurance" that also makes profits... and makes that system of "insurance" easily rendered ineffective or non applicable (often in proportion to the severity of the illness)... Well, I think that's a society that is getting something fundamentally wrong. Like at a "compromises the human rights of the citizens" level of wrong. (Not that all socialized medicine countries get things right -- especially when dealing with rare, severe, or specialized illnesses, which sometimes just go without any effective treatment at all -- but I just look down on America for not even trying to solve the problem, while making money from the existence of the problem.) 5 6 Quote Link to comment Share on other sites More sharing options...
Katy Posted January 31, 2023 Share Posted January 31, 2023 I’m sorry. 2 Quote Link to comment Share on other sites More sharing options...
Faith-manor Posted January 31, 2023 Share Posted January 31, 2023 52 minutes ago, bolt. said: Ok, I agree with you! A society that makes profits off illness... and makes greater profits proportional to the severity of the illness... and creates a system of patchwork "insurance" that also makes profits... and makes that system of "insurance" easily rendered ineffective or non applicable (often in proportion to the severity of the illness)... Well, I think that's a society that is getting something fundamentally wrong. Like at a "compromises the human rights of the citizens" level of wrong. (Not that all socialized medicine countries get things right -- especially when dealing with rare, severe, or specialized illnesses, which sometimes just go without any effective treatment at all -- but I just look down on America for not even trying to solve the problem, while making money from the existence of the problem.) 👏👏👏 1 Quote Link to comment Share on other sites More sharing options...
QueenCat Posted January 31, 2023 Share Posted January 31, 2023 2 hours ago, Spryte said: Oh, this is good, hearing that several of you filed successful claims. Thank you! I will cross my fingers that ours is covered as well. The key is often whether or not there was another specialist in-network that you could have gone to... 2 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted January 31, 2023 Share Posted January 31, 2023 Aww, I am so sorry for how awful this has been for you. I pray you find healing soon. 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 31, 2023 Share Posted January 31, 2023 I have EBV. It's also hard to knock out because it has a tough shell. One of the supplements my ND put me on was Biofilm Phase 2 Advanced by Priority One. It's designed to weaken the more difficult biofilms so what is inside can be killed. I'm sorry. It sucks. I had a viral infection years ago, and it changed my health and really weakened my immune system. 2 Quote Link to comment Share on other sites More sharing options...
Spryte Posted January 31, 2023 Author Share Posted January 31, 2023 1 hour ago, QueenCat said: The key is often whether or not there was another specialist in-network that you could have gone to... Sadly, I’m running out of options. Frustrating. 3 Quote Link to comment Share on other sites More sharing options...
Spryte Posted January 31, 2023 Author Share Posted January 31, 2023 18 minutes ago, gardenmom5 said: I have EBV. It's also hard to knock out because it has a tough shell. One of the supplements my ND put me on was Biofilm Phase 2 Advanced by Priority One. It's designed to weaken the more difficult biofilms so what is inside can be killed. I'm sorry. It sucks. I had a viral infection years ago, and it changed my health and really weakened my immune system. Ah, yes, that’s one that I have on Auto Fill — I’m religious about taking it. Also Boluoke, which can help with the same, among other things. I imagine I’ll be taking both of those forever. I switched to the Priority One from another biofilm buster. In the spirit of hope, for you: EBV was one of my many issues 15 yrs ago, and we did get it under control. It was a lot of work. I hope you get it under control soon! 3 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted February 1, 2023 Share Posted February 1, 2023 11 minutes ago, Spryte said: Ah, yes, that’s one that I have on Auto Fill — I’m religious about taking it. Also Boluoke, which can help with the same, among other things. I imagine I’ll be taking both of those forever. I switched to the Priority One from another biofilm buster. In the spirit of hope, for you: EBV was one of my many issues 15 yrs ago, and we did get it under control. It was a lot of work. I hope you get it under control soon! where did you get it on autofill? I was also on several immune boosters - then my dr went out on sabbatical. This new one, we've been working more on thyroid (which I've had to beg drs to do, I feel like if we can get the thyroid stable, other stuff will be easier to stabilize.) Quote Link to comment Share on other sites More sharing options...
Spryte Posted February 1, 2023 Author Share Posted February 1, 2023 45 minutes ago, gardenmom5 said: where did you get it on autofill? I was also on several immune boosters - then my dr went out on sabbatical. This new one, we've been working more on thyroid (which I've had to beg drs to do, I feel like if we can get the thyroid stable, other stuff will be easier to stabilize.) Full Script (sp) through my doc — you might check to see if you can order without a doc. It’s the best price I’ve found, but I haven’t looked hard. I use that for a lot of supplements because it’s less expensive and supports my doc. Boluoke (lumbrokinase) is through the company that makes it — it’s so expensive! Yes, we had to work on thyroid and some other stuff before making big progress on bugs, way back when. There was an order to it all. May not apply to you, but I needed adrenal support as well. Hopefully once you have your thyroid how you need it you will start to have a domino of good effects! Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted February 1, 2023 Share Posted February 1, 2023 25 minutes ago, Spryte said: Full Script (sp) through my doc — you might check to see if you can order without a doc. It’s the best price I’ve found, but I haven’t looked hard. I use that for a lot of supplements because it’s less expensive and supports my doc. Boluoke (lumbrokinase) is through the company that makes it — it’s so expensive! Yes, we had to work on thyroid and some other stuff before making big progress on bugs, way back when. There was an order to it all. May not apply to you, but I needed adrenal support as well. Hopefully once you have your thyroid how you need it you will start to have a domino of good effects! I can buy it online without a scrip. I can buy it through my dr, not necessarily cheaper, but if there are stock issues it is more likely to be received sooner. adrenals are next. . . i was supposed to go in friday - but my flight was cancelled, and I was rebooked for friday . . . So, I get to call my dr's office tomorrow to reschedule that . . . 2 Quote Link to comment Share on other sites More sharing options...
busymama7 Posted February 1, 2023 Share Posted February 1, 2023 I have found that drs that don't take insurance are so much more reasonably priced that it isn't much more than co pays. Have you gotten prices yet? 2 Quote Link to comment Share on other sites More sharing options...
Spryte Posted February 1, 2023 Author Share Posted February 1, 2023 6 hours ago, busymama7 said: I have found that drs that don't take insurance are so much more reasonably priced that it isn't much more than co pays. Have you gotten prices yet? I only have the initial consult visit price, which is $600. No idea on treatment cost yet. My regular specialist consult copay is $30, so it’s a difference. It’s doable, I’m mostly anxious about the treatment cost. My last abx-resistant infection round was so expensive, I probably shouldn’t speculate! 2 Quote Link to comment Share on other sites More sharing options...
Soror Posted February 1, 2023 Share Posted February 1, 2023 7 hours ago, busymama7 said: I have found that drs that don't take insurance are so much more reasonably priced that it isn't much more than co pays. Have you gotten prices yet? I've not found that to be the case at all. What I've seen is the doctors that won't take insurance are way more expensive. They left insurance so they wouldn't have to take cheaper contracted rates. @Spryte good luck to you- I hope the treatment is helpful and cheaper than expected. It is hard enough dealing with health issues. Then having it be super expensive on top of it is icing on the cake. Medical care is broken in the US. 3 1 Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted February 1, 2023 Share Posted February 1, 2023 @Spryte Are there other options? Often teaching/research hospitals are the best in their field and take insurance. Mayo takes insurance. I've not run across this before except in the Lyme community where the treatments are not yet accepted by the medical community. I am so sorry. Medical stuff is exhausting and you're dealing with it tired, hurting, and medical bureaucracy operates on a non urgent timeline. 😞 3 Quote Link to comment Share on other sites More sharing options...
Spryte Posted February 1, 2023 Author Share Posted February 1, 2023 36 minutes ago, BlsdMama said: @Spryte Are there other options? Often teaching/research hospitals are the best in their field and take insurance. Mayo takes insurance. I've not run across this before except in the Lyme community where the treatments are not yet accepted by the medical community. I am so sorry. Medical stuff is exhausting and you're dealing with it tired, hurting, and medical bureaucracy operates on a non urgent timeline. 😞 I’m not finding many. My deep fear is that this will end up in the realm of Lyme/co-infection treatment, and we will just have to go OOP. But maybe not. So far, I’ve been to a few specialists who shrugged it off, and pushed me to other fields. I left a lot of doc offices and cried. I’m not sure how to connect with Mayo, but I can ask. My GP is on sabbatical now (long Covid), so her stand-in is suggesting this particular specialist. I will ask about alternatives, too. Thanks. 3 Quote Link to comment Share on other sites More sharing options...
bolt. Posted February 1, 2023 Share Posted February 1, 2023 Also, aren't you at all concerned that rare "specialists" like this might actually be keeping their techniques and procedures to themselves, shutting out other doctors in their field? I mean, I guess they could be so special because they are some kind of savant, with excellent observation and interpretation skills that just operate on instinct. There are such things as instincts that just can't be replicated by another practitioner... that's a real possibility and I'm not discounting it. But if they really just have a good protocol for diagnosis and treatment that works better than other people's protocols: why isn't that being published, widely distributed, properly put through a double-blind comparison of results, and then widely adopted? And even if they are doing great work based on some sort of 'instinct' -- shouldn't someone constantly job-shadow such a doctor, so that if it can't be 'taught' it might at least be 'caught' and spread around at least a little bit? Or are these conditions just so rare that only a few capable doctors are needed because the pool of patients is pretty small, and they can handle it? But, even so, geography matters. A local doctor should have some access to at least knowing what a specialist would do 'to start', or partnering with the specialist from a distance so the services can be delivered at least partially locally. 1 2 Quote Link to comment Share on other sites More sharing options...
Spryte Posted February 1, 2023 Author Share Posted February 1, 2023 16 minutes ago, bolt. said: Also, aren't you at all concerned that rare "specialists" like this might actually be keeping their techniques and procedures to themselves, shutting out other doctors in their field? I mean, I guess they could be so special because they are some kind of savant, with excellent observation and interpretation skills that just operate on instinct. There are such things as instincts that just can't be replicated by another practitioner... that's a real possibility and I'm not discounting it. But if they really just have a good protocol for diagnosis and treatment that works better than other people's protocols: why isn't that being published, widely distributed, properly put through a double-blind comparison of results, and then widely adopted? And even if they are doing great work based on some sort of 'instinct' -- shouldn't someone constantly job-shadow such a doctor, so that if it can't be 'taught' it might at least be 'caught' and spread around at least a little bit? Or are these conditions just so rare that only a few capable doctors are needed because the pool of patients is pretty small, and they can handle it? But, even so, geography matters. A local doctor should have some access to at least knowing what a specialist would do 'to start', or partnering with the specialist from a distance so the services can be delivered at least partially locally. I agree! I don’t have answers, but I think, in part, some of the issue in my particular situation is that there’s a mainstream view that has been widely accepted based on old lab testing resources, that this is not fixable, that patients like me have a chronic, degenerative condition that will just worsen and worsen. And now there’s a subset of docs using newer, but peer-reviewed not experimental, lab techniques finding that there’s a treatable cause — in my case antibiotic resistant bacteria — for at least some of these patients. I think some of it comes down to when people went to med school, do they read their Up To Dates, are they continuing to learn or do they just treat patients the same way each time? In my case, it looked like this (maybe TMI, might delete later): My very old school local urologist couldn’t find a consistent answer using the standard urine culture (though he did say that there are occasionally “zebras” out there, but they are exceedingly rare and didn’t want to test further, wanted to just continue with our non-helpful path, with me worsening slowly [shudder]). But my GP, who is always researching, said, “I went to a conference and saw someone give a talk on this! Let me investigate and get back to you.” And then she contacted the expert, learned about alternate tests and labs, and they worked out a treatment plan. It couldn’t have been too experimental, as insurance was covering the monthly specialty lab costs and meds. It was all rolling along until Long Covid took out my GP, sigh, and her counterpart has passed me off to the “special” specialist. So I think some of what you mention is happening, in that there is an effort to share the knowledge — maybe it’s just not successful yet? Maybe this is too new? Actually, in typing the above, I did just regain some hope that insurance will reimburse a good amount of whatever treatment we do, since they were covering so much before. So that’s good. Kind of a tangent, but as far as the Lyme community goes, that Blsdmama mentioned, that one comes down to two different international, peer-reviewed sets of guidelines, with factions of warring specialists. That’s a different beast. 2 Quote Link to comment Share on other sites More sharing options...
kbutton Posted February 1, 2023 Share Posted February 1, 2023 51 minutes ago, bolt. said: Also, aren't you at all concerned that rare "specialists" like this might actually be keeping their techniques and procedures to themselves, shutting out other doctors in their field? I mean, I guess they could be so special because they are some kind of savant, with excellent observation and interpretation skills that just operate on instinct. There are such things as instincts that just can't be replicated by another practitioner... that's a real possibility and I'm not discounting it. But if they really just have a good protocol for diagnosis and treatment that works better than other people's protocols: why isn't that being published, widely distributed, properly put through a double-blind comparison of results, and then widely adopted? And even if they are doing great work based on some sort of 'instinct' -- shouldn't someone constantly job-shadow such a doctor, so that if it can't be 'taught' it might at least be 'caught' and spread around at least a little bit? Or are these conditions just so rare that only a few capable doctors are needed because the pool of patients is pretty small, and they can handle it? But, even so, geography matters. A local doctor should have some access to at least knowing what a specialist would do 'to start', or partnering with the specialist from a distance so the services can be delivered at least partially locally. Spryte covered this well, but I would also point out that a lot of new, niche treatments or schools of thought take a LONG time to trickle down to regular doctors or even other specialists. Until they do, they might not always be covered. @Spryte, an extended family member of mine had biofilm issues with sinuses, and it was interesting for him to try to get his meds; they were just compounded antibiotics (specialized format), so I can't imagine what it would be like to have to keep doing lab follow-ups, etc. Also, some schools of thought, such as functional medicine, are often not covered, but mainstream docs have recommended I see one because they have seen good results. They almost never toss it out as a blanket suggestion--they usually know of a specific practice that is doing good work. Some wish they could follow, but they can't get treatments covered for their patients...eventually some of them leave and do concierge medicine or go out of network. Sometimes the coverage comes down to being willing to pay a dedicated office person to spend a lot of time on the phone with insurance companies--not everyone wants to do that or has a person who can do that if the majority of their business is going to be spent fighting uphill. My allergist recently recommended an evidence-based treatment to me, and I should be able to do it easily because it's a combo of OTC meds. If it weren't, I would probably not be able to use it (and I really will only need it infrequently and haven't had a need to try it yet). He just kind of shook his head when talking about trying to get non-specialists to use the protocol, and it's for a pretty common problem (sinus headaches related to weather/atmospheric pressure changes). 2 Quote Link to comment Share on other sites More sharing options...
Spryte Posted February 3, 2023 Author Share Posted February 3, 2023 I went. It was an excellent appointment. Loved the doc. Very comfortable with the plan. It’s expensive, but not in the realm of, say, OOP IV Lyme treatment. Whew! 12 1 Quote Link to comment Share on other sites More sharing options...
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