SIBO is $200 extra.
Which doc? Kaufman/ Chheda or Montoya?
- Thread starter HeleneG
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StarChild56
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Thank you. Yes, I saw the later post (I forget which poster) confirming the first 2 visits not including any testing is now $800. Things have gone up. Again, IMO, it is worth it if one can swing it.
StarChild56
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I emailed the Center and received the following response:
"Initial appointment is always in person. Follow-up appointments can be done via phone consult. Our doctors do not use Skype."
Gingergrrl
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That was my guess from my experience. They really understand how challenging it is for patients coming from out of state (or outside the US) but need to initially assess in person to get a full picture. They are excellent with doing follow-up appts over the phone. I have never known of them to use Skype.
Thanks @Forçe e Honra and @Gingergrrl - I wish we had equivalent doctors in Australia. There’s just no way I could travel that far now. Ironic, seeing as I was living in the States when I first got sick
Learner1
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Sorry to be late to the party, I just caught up with this thread. I was referred to Montoya's clinic in October 2016 and finally got a call a month ago offering me an appointment for May, 2019! If they're that busy, you'd think they'd bring on more staff... And, from the info posted by the patients there, it seems to be cookie cutter medicine thats a fraction of what Center for Complex Diseases offers.
While i was waiting on Stanford, I learned about Dr Kaufman and began with him 13 months ago. I live 700 miles away, and have seen him 4 times in person, with the rest over the phone. The in person visits were critical to him diagnosing my POTS and other issues. He has emailed me lab orders and test results, specified tests to be run at a local hospital, and his hunches about my issues, which I was doubtful about at the time, have proven correct.
As far as costs, 90% of the labs were covered by my BCBS silver plan - they argued over one genetic test which they weren't familiar with, but had sound justification and is a known problem, and one test was sent to Germany, which came back with valuable info but my insurance didn't recognize. I have a $10,000 out of network deductible, so my visits arent covered, but having seen a parade of useless MDs in the previous 2 years, Dr. K was finally able to diagnose me and treat me with some fairly expensive treatments that have helped me, and that he got my insurance to cover. So, though seeing him has been expensive there has been great value to what he's done and seeing the other doctors who wouldn't/couldn't help was a poor value.
From my dialog with a few of Dr. Chedda's patients and seeing some of her lab work, she seems very capable as a true partner, and is working similarly to Dr. K. They also communicate regularly with the researchers, and Dr K has told me some things that helped my diagnosis and treatment as soon as it became available and they've had a few of us donate blood for the researchers' new studies.
The only caveat is that having a functional medicine doctor as a complement to them would be helpful. I work with an ND who manages my hormones, pre and probiotics, and nutrients and prescribes things to support what Dr. K is doing. I also found a dysautonomia specialist and a mitochondrial specialist locally who are adding specialty pieces. Other patients also have a team of doctors.
This is a complex disease, and no doctor will be able to know everything. I find that sharing the work of each doctor with the others as efficiently as possible haa brought new ideas into the mix and helped me faster. And these doctors are brilliant and experienced and willing to act on new ideas and not being limited to "coloring inside the lines" as someone mentioned earlier and I've found to be true with the 4 medical systems I approached for help. All my doctors are in practices independent from large institutions.
Best wishes...
Thanks for this informative post. I am now totally convinced that I should see Dr. K. I have an appointment for Sept and I am really hoping that he can help. I am becoming steadily more disabled though now I am really trying to cut back on any exertion. I just invited some friends to come over and cook me dinner. I will try to just sit back and enjoy the company and not exert myself at all.
StarChild56
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I'm so sorry! I hope that someone on PR may have a good doc in Australia, near you.
StarChild56
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Yes, please rest as much as possible. I know it can be difficult. For some time, whenever I felt a teensy bit better I'd push myself to do things because I LIKE to do things and be productive (and this was all modified in the way I did them, with help, etc.). But I have worsened to the point that - there is no "pushing" myself. I simply can do nothing most of the time. It is a hard balance though cause I love to do anything - a little cooking, spending time in the family room with my family, etc. I will spend time with my family if I can manage it, as that is what I miss most.
I would like to see a poll of how many people have been helped by the center for complex diseases vs how many who haven't. Also what degree of improvement those improved had.
I don't want to think about cost or waiting times without knowing if it is good or not.
I don't want to think about cost or waiting times without knowing if it is good or not.
StarChild56
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I just got another SIBO test kit and it cost me $240, fyi.
did you order it online? where?
StarChild56
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No, sorry I did not order it online. Dr. Kaufman's office ordered it for me, it will be mailed to me, I will do the test, then mail it to the lab. I did the same thing about a year ago.
Sing
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A question for those of you who go here, do you all submit your bills for lab tests, etc. to Medicare or your insurance completely on your own? And how does that go for you?
I spoke to the secretary at the CCD today about making an initial appointment, as I am moving to the San Francisco area this fall, but she maintained a wall towards my question whether patients are able to get any Medicare, supplemental or other insurance coverage to help cover some of the bills. “No information” was her position.
It is good to read here on this thread that labs may get coverered, in whole or part, but I wonder about how difficult it is to achieve this—multiple submissions, long waits on hold, runarounds or what? All I have is Medicare, a Medicare supplemental coverage from an insurance co, and a Medicare prescription drug plan—that “suite”. Anyone with this type of experience who can give me a little more information?
I spoke to the secretary at the CCD today about making an initial appointment, as I am moving to the San Francisco area this fall, but she maintained a wall towards my question whether patients are able to get any Medicare, supplemental or other insurance coverage to help cover some of the bills. “No information” was her position.
It is good to read here on this thread that labs may get coverered, in whole or part, but I wonder about how difficult it is to achieve this—multiple submissions, long waits on hold, runarounds or what? All I have is Medicare, a Medicare supplemental coverage from an insurance co, and a Medicare prescription drug plan—that “suite”. Anyone with this type of experience who can give me a little more information?
StarChild56
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@Sing
All my labs have been covered but I have 2 insurance carriers: my Primary is through my husband's employer, and Medicare is my secondary. The labs bill your insurance for you. Since Medicare is my secondary, the majority of the bills are paid by my primary and I assume most of what is left will get paid by Medicare. I will explain:
In the case of my primary care physician's office, I almost never had a copay for labs they billed my primary first, then Medicare as secondary and I had little to no out of pocket cost.
For CCD, I have been going to Quest (not the same lab as my primary care office, they have in house labs it is a health system). I have been getting labs done there for a YEAR and they still have not managed to bill Mediare correctly. They have problems because my case is unusual as Medicare is my secondary and it is almost always Primary. It has been a nightmare for me and I'm still having to follow up, document, etc. I only speak to a particular supervisor now, and she admitted they have a problem billing Medicare as secondary.
So for you, I would assume most of your labs would be covered at least to a certain extent and I think that Quest or whatever lab you go to will get your insurance info upfront and hopefully tell you if something is NOT covered by Medicare. For instance, I was told one particular test is not covered by Medicare, by Quest before they took my draw and I had to sign that I understood and how much.
Also, once you get the lab request from CCD, you can call Medicare and ask if those tests are covered.
CCD does not bill any insurance but they will give you a "Superbill" that gives you all the info you need to submit a claim. My understanding is that Medicare will not pay for any claims from CCD because you have to be certified through Medicare, as a provider for claims to be accepted and paid. This was certainly true a few years ago but I'd call Medicare (the 1 800 number) and ask if you submit a claim and explain that the office does not do any billing, is there a chance you'd get any reimbursement. It is worth the call I'd think. Even if they would accept a claim from you, if they'd pay anything for office visits from a doctor who is not a certified Medicare provider (doubtful but worth checking), the Medicare rate is much lower than CCD's rates. But if you get some reimbursement that'd be nice.
Hope I helped and did not confuse the matter.
Good luck!
All my labs have been covered but I have 2 insurance carriers: my Primary is through my husband's employer, and Medicare is my secondary. The labs bill your insurance for you. Since Medicare is my secondary, the majority of the bills are paid by my primary and I assume most of what is left will get paid by Medicare. I will explain:
In the case of my primary care physician's office, I almost never had a copay for labs they billed my primary first, then Medicare as secondary and I had little to no out of pocket cost.
For CCD, I have been going to Quest (not the same lab as my primary care office, they have in house labs it is a health system). I have been getting labs done there for a YEAR and they still have not managed to bill Mediare correctly. They have problems because my case is unusual as Medicare is my secondary and it is almost always Primary. It has been a nightmare for me and I'm still having to follow up, document, etc. I only speak to a particular supervisor now, and she admitted they have a problem billing Medicare as secondary.
So for you, I would assume most of your labs would be covered at least to a certain extent and I think that Quest or whatever lab you go to will get your insurance info upfront and hopefully tell you if something is NOT covered by Medicare. For instance, I was told one particular test is not covered by Medicare, by Quest before they took my draw and I had to sign that I understood and how much.
Also, once you get the lab request from CCD, you can call Medicare and ask if those tests are covered.
CCD does not bill any insurance but they will give you a "Superbill" that gives you all the info you need to submit a claim. My understanding is that Medicare will not pay for any claims from CCD because you have to be certified through Medicare, as a provider for claims to be accepted and paid. This was certainly true a few years ago but I'd call Medicare (the 1 800 number) and ask if you submit a claim and explain that the office does not do any billing, is there a chance you'd get any reimbursement. It is worth the call I'd think. Even if they would accept a claim from you, if they'd pay anything for office visits from a doctor who is not a certified Medicare provider (doubtful but worth checking), the Medicare rate is much lower than CCD's rates. But if you get some reimbursement that'd be nice.
Hope I helped and did not confuse the matter.
Good luck!
Sing
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@Forçe e Honra Thank you so much for going into those details for me, sharing your experience and what you have learned. It is very helpful to me, and reassuring, because I can know what is taking place and how to deal with it. You have been battle tested, learned what to do and are willing to help another patient. Thank you again for giving me this help as I know you have very limited energy.
I like sharing and helping too. That is what makes these forums like a good neighborhood!
I like sharing and helping too. That is what makes these forums like a good neighborhood!
StarChild56
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