Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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experience with Dr Chheda at the Open Medicine Institute

Discussion in 'ME/CFS Doctors' started by hmnr asg, Apr 11, 2017.

  1. hmnr asg

    hmnr asg Senior Member

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    Hi there,
    I like to share my experience regarding my visit with Dr Chheda at the OMI with everyone. This post includes a lot of my subjective opinion and so you may not agree with me at all. This post is mostly me ranting about my expenses that I incurred during my visit to the OMI which were not covered by my insurance (although I had been told they would be). So here it goes..

    I first got struck down by CFS seven years ago (2010ish). I was in Canada at the time and the doctors ran me through the gamut of tests and naturally they came up empty handed. I decided to live with the condition until I moved to the US three years ago. I was seen by a neurologist and an internist at Stanford and they also made me go through a lot of tests and came up empty handed.

    At this point I had resigned myself with living with CFS. I knew there was no cure (in my opinion). So when i found out there is a place called the "Open Medicine Institute" not so far from my house I decided to check it out. I had some money left in my flexible spending account (if you are not from the US, think of it as a medical saving account) and decided to check out the OMI.

    I made an appointment not because i thought they would cure me, but I thought it would be nice to have a doctor actually believe what you are saying and not think you are a whack job who is making things up. I thought why not try, but I had very little expectations.
    I got scheduled and saw Dr Chheda. I knew their clinic usually looks for underlying viral causes for chronic fatigue and they experiment with retroviral/antiviral medications (not sure on this one), but I had already gone through extensive tests and so i didnt really believe they would find something.

    So i visited with her and she was very nice but i dont think she was any more qualified than my doctors in Stanford (who hold teaching positions at the medical school there and have tons of publications). So i thought, ok, lets go along, whats the harm in this?

    So she examined me and gave me a very large set of blood tests. She told me this would be covered by my insurance. The blood tests were done by Quest Diagnostics. So i leave her office having had my prior expectations confirmed, nice people, but theyre not going to find anything.
    Sure enough the test results came and there was very little useful information there. Two mutations in MTHFR (for which she told me i should take B12 and methylfolate, which i was already taking!). She gave me lyme test also which showed nothing.

    Anyhow, the lyme test cost around 1200$, and my insurance company paid "some" of it (to be fair, she had warned me this may be partially covered by insurance and so i had set money aside for this).

    The rest of the blood tests were DENIED by my insurance company, and now I have a 2500$ bill, aside from the portion of the lyme test and aside from the 500$ (Approx) a session with DR Chheda. I have been calling Quest Diagnostics, the OMI, my insurance company and back and forth since January of this year. This has caused a tremendous amount of stress on me. The visitation fees and the lyme test were fair and I had accounted for them and i knew they would be there up front. But I was not prepared for the additional 2500$ that I have to pay which Dr Chheda said would be covered.

    The worst part is that her secretary, after my initial email did nothing more to help me in way of sending additional documents to the insurance company and stopped replying to my emails. In fact when i recently called my insurance company (I am calling them every other week now) they said they had requested additional documents which were not sent. I have written appeal letters, spent countless hours on the phone, begged various parties to help me, but nothing. The charges will go to the collection agency because I dont have the money, and this will have significant consequences on my life. So much for "whats the harm?" and of course the visit showed nothing useful to me.

    Of course I am not saying that visiting OMI is a waste of time, but they are offering a very ambitious promise, that they "may" be able to help you with CFS, which as far as i know is incurable. And in way of managing this disease, you can get a lot of mileage from a good general doctor (my opinion of course).

    At the end, if you have the money, why not try it, you might be one of those people who ends up showing something on one of their blood tests. And Dr Chheda is a genuinely nice person.
    In case you are wondering, I have Aetna PPO insurance through my employer.

    Sorry for the long rant!

    H
     
    Last edited by a moderator: Apr 11, 2017
  2. Basilico

    Basilico Florida

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    @hmnr asg , how frustrating! I've also had some fairly unexpected medical expenses, and it's such a horrible feeling when you think you've accounted for the costs and then WHAM, like a baseball bat to the gut, there's more.

    I appreciate you sharing your experience, and sadly it reinforces my experiences of "CFS specialists"; charlatans who are happy to bleed patients dry but have little to nothing to offer in return in terms of actionable treatments. I think that so many CFS/ME patients are so desperate to find a doctor who listens and doesn't dismiss them outright that they are willing to spend big bucks even if a kind ear is all they get. It really infuriates me....anyway, so sorry you had this bad experience, but at least you know that you've left no stone unturned.
     
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  3. *GG*

    *GG* senior member

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    I would try not to stress about the $2500 bill. I have heard that Medical bills will not hurt your credit rating, can anyone confirm this? And if you let it go to collections, they will take pennies on the dollar, I have heard 10%, so that 2500 dollar bill would only be $250 perhaps?!

    I have used Quest as well with my newer Obamacare insuarnce, and am getting bills for over $300. My Dr uses Labcorp as well, so hopefully using them will not make me incur another similar bill?

    My Dr does not take my insurance, so I pay cash to see him. It's under $200 for a 30 to 40 min visit, I visit him 2 time s a year to keep my medical record up to date for my disability process, still not getting disability, so I have no income. My previous insurance paid, but I had great insurance when working, but that was over 3 years ago now!

    GG
     
    Last edited: Apr 12, 2017
  4. Basilico

    Basilico Florida

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    @*GG* , this is a good point. Several times when I got big bills for ridiculous things, I called the lab or doctor's office and explained that I couldn't afford to pay the whole thing, but I could pay a portion (say half) and every time they were willing to work with me and reduce the total. So, I think it's definitely worth trying, especially because if it goes to collections, the lab will still only get a small portion of the amount anyway.
     
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  5. hmnr asg

    hmnr asg Senior Member

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    @Basilico @*GG* I actually called Quest Diagnostics which is actually a huge company and asked if I can negotiate a price because I cant afford the bill. They told me they dont negotiate with patients!
    Also from what I have read so far if a charge does go to collection agency, even if its medical bills, it will affect your credit.
    Honestly the anxiety and stress this has caused me has done more to deteriorate my health than any other life events in recent memory. I wish I had saved my money/time and purchased some "holy water" from that whacky pastor who comes on TV late at night; it would have been a lot less damaging to my health and would have cost way less. Sigh.

    H
     
  6. *GG*

    *GG* senior member

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    yeah, I figure they will not negotiate with you directly, otherwise they would use a lot of manpower doing that. Is the hit to your credit record significant? Lets say it goes to collection and you pay it off then, at a reduced rate.

    How much would it take to repair your credit? Unless you are in the market of a big ticket item, perhaps this would not impact you in the near term?

    I had to file bankruptcy a few years ago, started working on rebuilding my credit, but then became unemployed without income. So there really is not much I can do to pay large bills. I am Not going to stress myself out about this, Not really anything I can do about it!

    GG
     
  7. hmnr asg

    hmnr asg Senior Member

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    @*GG* I guess I can just not pay it and let it go to collections, but i have never not paid a bill in my life. I guess thats the only choice here.
     
  8. Basilico

    Basilico Florida

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    It's unfortunate that Quest wouldn't negotiate because their charges are super inflated, and the insurance companies reduce Quest's charges by about 80% (I've seen this when I get statements showing what Quest billed them and what the insurance company approves as a legit charge).

    I'm not an expert in what will or won't damage your credit rating. However, I did have an issue several years ago where I bought airline tickets and then had to cancel the trip. I got an email saying that I'd get a refund, minus $300 of cancellation fees, but I never got the refund. So I filed a claim with my credit card company (Bank of America) who reversed the charges. The company I booked the tickets with tried to claim that I wasn't entitled to the refund, but I had an email showing otherwise. They kept harassing me and eventually sent it to collections. When I got the collections call, I explained the whole situation and then made them a nice packet of documents showing that I was entitled to the refund (I included the email). I never heard back from the collections agency and my rating never dropped.

    So even though it's not a good thing to have a bill go to collections, it might not be as bad as you're expecting. Plus, even your credit score gets dented, if you are in otherwise good standing and have a pattern of paying other debt on time, it will recover.

    You said your insurance denied the bloodwork and that you called them; do they have a valid reason for denying it? If not, then I would suggest sending Quest a letter stating that your insurer is responsible for the bill, and you are in the process of trying to get them to take responsibility and ask them for more time.

    Overall, I think the most important thing is to not stress about this. I'm pretty sure that Quest has a payment installment program (I saw a sign last time I was there) so maybe you could set up some lower monthly payments that are more manageable.

    And if the burden of repaying it is too great, then maybe you are better off letting it go to collections, because collections will be ecstatic to take 50% or even less on the total.

    Unless you need to get a mortgage or car financing in the next few years, I think a small temporary hit to your credit score is not a big deal. It's certainly a better option than continuing to stress about it the way you are.
     
  9. hmnr asg

    hmnr asg Senior Member

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    @Basilico Thank you for the information.
    As why my insurance company is denying the charges, well, the problem isnt them, the problem is the Open Medicine Institute (OMI). They have asked for additional documents which OMI has just not bothered sending. As I mentioned, it seems they just sent in the original "history and physical". So the few times that I asked the insurance company to try harder to get the required documents, they said they just received the same document over and over again.
    Except for the MTHFR genetic testing, that one was downright rejected for being unnecessary and not proven to be useful. That one cost 500$ which I could have gotten through 23andme for 200$ (with a lot more additional information) but Dr Chheda said that "it should be covered". The remaining 2100 is misc tests which might have been covered if OMI would just send in what the insurance company had asked for.
    I wish i could pursue legal action against OMI but i think my hands are tied. I mean, first they really did nothing to help me, second, they didnt do their job in giving the necessary documents that the insurance company had asked for, third, they ignored my requests for help and stopped replying to my emails, and fourth, deceived me as to what would be covered by my insurance and ended up dropping a 2500$ charge on my lap.

    This is the message that had been lingering in my insurance company's web portal along with my OMI bill:
    Long story short, my insurance denied the 2000$ portion of the bill because OMI didnt send them the required documentation. The 500$ portion of it was due to MTHFR genetic testing that the insurance company rejected off the bat. All this in spite of the fact that they told me that this would all be covered at the OMI.

    H
     
    Last edited: Apr 12, 2017
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  10. adreno

    adreno PR activist

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    If you are able, I would physically go to the office and politely demand copies of the needed files, then send them to the insurance company yourself.
     
  11. Basilico

    Basilico Florida

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    @hmnr asg - so frustrating!

    You said that OMI stopped responding to emails - maybe you can call them (or ask a family member to call)? They might have a harder time ignoring you if you are on the phone. I know calling is a big pain, but if you are on the phone, it's easier to get across that your insurance company needs this form or else you will have to pay thousands of dollars that you don't have.

    Even if it does go to collections, you will have a good defense as to why you shouldn't owe the full amount (OMI refused to send documentation requested to the insurance company).

    I'm really hoping that you will be able to have a favorable outcome.

    Even though I know that it's not much of a consolation, the way I try to deal with big setbacks is to tell myself that if I've learned a valuable lesson to avoid the same problem in the future, then it was worth it. So in this case, what lesson could be learned? Don't trust doctors when they claim that insurance will cover something - contact the insurance company before getting ANY testing and confirm what will be covered, and what documentation or prior approvals are needed. I actually had to learn this lesson the hard way myself, recently, and I'm hoping that as a result I won't get into this situation again in the future.

    Whatever happens, just don't let yourself stress about this. $2500 is a lot of money, but it's not worth making yourself even sicker over it.
     
  12. Webdog

    Webdog Senior Member

    I'm sorry this happened to you. I hope you find a better resolution. It sounds incredibly frustrating.

    My experience was a bit different. OMI told me upfront that based on their experience, my insurance (Kaiser Permanente) definitely wouldn't cover anything out-of-network, and to not bother applying for reimbursement.

    However, Kaiser Permanente did agree to run many of the "standard" blood tests ordered by OMI, which saved me several thousand dollars.

    Basically, I would get a list from OMI for all the bloodwork they wanted. Then I'd give the list to my Kaiser Permanente doctor, who would approve some of it. Then I'd go to OMI to get blood drawn for the tests KP wouldn't do.
     
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  13. hmnr asg

    hmnr asg Senior Member

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    @Basilico You are right! honestly as a Canadian who is not used to dealing with insurance companies I was SO naive about dealing with the American health care system. You have to admit, it is extremely complicated! you are wedged between insurance companies and the medical system and in the end if there is a problem you, as the patient, is the one who will get the short end of the stick. In Canada you just flash your health card and you walk in and everything is covered, no deductibles, no copays, no insurance companies, no in-network/out-network distinctions, no ...
    I filed a patient appeal for the MTHFR and I will get on the phone with the insurance company and OMI from tomorrow to see if i can change anything. Otherwise i will file a personal appeal and if that didnt work, then screw it, 2500$ not worth losing my mind over. I just keep thinking i could have bought so many nice things with it. I live in a 400 sq ft apartment and the luxuries of my life is going to McDonalds (dont judge! Lol) once a month.

    Anyways, lesson learned ! thank you @Basilico for the support.

    H
     
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  14. hmnr asg

    hmnr asg Senior Member

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    Absolutely ! I am not in any way saying this is going to be the universal experience with OMI, many people have had really wonderful experiences with them, and I prefaced my post with "this is my personal experience".
    I have a PPO insurance, rather than an HMO, so I guess their experience with PPOs were so that they thought things would be covered. I am not saying they are charlatans or they deliberately deceived me. My biggest frustration is with myself for visiting them knowing they werent going to help me, and also a bit at the OMI for telling me things would be covered and then not following up appropriately with the insurance company.

    H
     
  15. Webdog

    Webdog Senior Member

    My experience with OMI was a mixed bag. I too had trouble with OMI not following up on things.

    I truly hope this works out for you.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    This sounds amazing but is sadly not the reality in the U.S. and never will be. But I think if you are not used to it, it must be pretty shocking.

    My experience with OMI since 2014 (not Dr. Chheda though) is that they have never promised me that any test, med, or treatment would be covered and that it was always up to me to discuss this with my insurance. I have had many nightmares with my insurance company but the ones connected w/OMI were the few times that my doctor really made a hardcore attempt to advocate for me and got my IVIG approved every time my insurance tried to pull nonsense.

    My worst experience was with Stanford (not the ME/CFS clinic and a different one) who verbally told me on phone that they took my insurance but later retracted it and said they did not accept my PPO insurance- period. I owed over $2K and then a second bill for over $3K and it was the worst care I have ever received and cannot even call it "care" looking back on it. I applied for financial aid from Stanford and was denied. It was a learning experience like you said that I will never repeat.
     
  17. hmnr asg

    hmnr asg Senior Member

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    @Gingergrrl I think maybe Dr Chheda, being new to the clinic may not have known how different PPOs can be (I have aetna). Again, i think Dr Chheda is a nice person and had she known she would have no reason to lie to me.

    My question to you is, did they, through their diagnostic efforts and through their treatment plan, help improve your CFS in a meaningful way beyond what your regular family physician has done? We all pour thousands into the hands of so called "ME/CFS" doctors who promise treatments but their efforts usually fall into a few categories, none of which are helpful: (in my opinion, of course)
    1) Cast a very wide net (give hundreds of blood tests) and hope for something to show up. Great idea, but patient ends up paying a lot of money, also its not very educated, it's trial and error, making it ever harder to get it reimbursed, rarely shows anything
    2) They suggest treatments for you that you can just google in 2 minutes: CoQ10, magnesium, LDN...
    3) whackadoodle treatments: crackpot medicine. Many patients are willing to try anything to get their lives back, i certainly would

    The lack of a meaningful treatment for ME has left a big vacuum open and the vulnerable patients who suffer tremendously are willing to pour in thousands to try anything, even if the hopes of success are slim. Some of these doctors are clearly snake oil salesmen and crackpots and are deliberately trying to scam patients. But some are in fact well intentioned, like the people in the OMI. However, at the end of the day, they have nothing useful to offer beyond the simple ideas I could have found on this site. And if your regular doctors have made a solid effort to rule out all other conditions that can mimic the symptoms of ME, i think the best solution is to keep your money and just learn from other patients. What we need is real research (like what Ron Davis is doing), rather than sham ME medicine with its false promises that end up bankrupting patients and fill the pockets of certain doctors. (in my opinion)
    I wish i could have donated this 2500$ to the research of Dr Ron Davis instead of paying it to Quest Diagnostics.

    H
     
    Last edited: Apr 12, 2017
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  18. Gingergrrl

    Gingergrrl Senior Member

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    @hmnr asg I have never met Dr. Chheda and my only doctor since I started at OMI in June 2014 is Dr. Kaufman. I'm not able to say the name of my insurance company but they have given me significant grief which Dr. K has spent a great deal of his own time trying to advocate for me. It is possible that Dr. Chheda is newer to the system and assumed that tests would be covered which were not. But this is only an assumption on my part which could be totally wrong.

    I do not blame you at all and would be furious if I had to pay that amount to Quest. I do not know if it is pure luck (or why this has occurred?) but every single Quest test that Dr. K has ordered for me since 2014 has been covered and I have never had to pay more than my $20 co-pay (to Quest) or to Lab Corp. My experiences w/other places (like I mentioned above) this has not been the case. My insurance denied me meds in 2015 that were life & death (Benadryl shots and syringes when I was having daily anaphylaxis and were prescribed by a hospital!) but this was not OMI's fault.

    This is a long and complex answer but since you both started the thread and you asked the question I will reply (and hope it does not take your thread off track)! In my case, I can say without hesitation that Dr. K and OMI have kept digging until they found the core of my problem which we are now trying to address. It took several years to get here but there was never a point in time that I felt he would give up on me no matter how weird or obscure my symptoms were.

    I had a PCP who basically slapped a "CFS" diagnosis on me in 2013 and for all purposes fired me b/c "Everyone knows there is no treatment for CFS". I was left on my own to try to figure out what was wrong and saw cardiologists and every specialty under the sun. On my own I was diagnosed with Hashimoto's and POTS but was much sicker than those two diagnoses alone should explain. I found PR which led me to OMI and Dr. K.

    Because my PCP had given me a CFS diagnosis, which I wholeheartedly believed to be true, and b/c my illness started with Mono/EBV, we took this as the starting point. (I also had severe toxic mold exposure but we did not yet know this when I first went to OMI). I had very high IgM titers to several viruses, very low NK functioning, MTHFR mutations, undetectable vasopressin, POTS, hypotension, severe autonomic problems, and later developed MCAS. Everything made sense yet many of my core symptoms were different from the majority of other patients (severe muscle weakness and shortness of breath to where I could not stand more than about 30-60 seconds) yet no real fatigue, no delayed PEM, no cognitive issues, no flu-like symptoms, etc.

    Dr. K discussed my case with many of my other doctors and when I began having anaphylaxis from MCAS, he did not stop until I was hospitalized and we found a treatment that worked until I was able to see an MCAS specialist. When we discovered that I have eleven autoantibodies, we both concluded that ME/CFS is not my correct diagnosis (even though there is no bio-marker so no one truly knows what it is). I have something very similar to ME/CFS (both the viral triggers and many of the symptoms) yet different at the same time.

    So he fought very hard for my insurance to approve high dose IVIG and it is the best treatment I have ever done. I saw three Neuros who refused IVIG but Dr. K advocated w/my insurance until it was approved and continues to advocate. I now have a significant improvement in my muscle weakness to the level that people who know me are stunned. My MCAS reactions to food are in remission and in 2015 I was allergic to all food but water. My insane startle reflex is gone, my overall stamina/endurance has improved, etc.

    This leads us to believe that I am a good candidate for Rituximab (b/c of the 11 autoantibodies and my positive response to high dose IVIG) b/c my most intractable symptoms (autonomic dysfunction and shortness of breath) are still quite severe although even those have a slight improvement. So this is our next big insurance hurdle, and no idea what the outcome will be, but I know that Dr. K and OMI will fight for me and if anyone on earth can get it approved, they can.

    So in my case, yes, it was absolutely worth it and I have no regrets even though I initially tried two anti-virals that did not help. But at least I had the opportunity and the free will to try the AV's b/c of OMI. I now have a PCP (on paper) but he has met me only once. He was a nice man at our one meeting in 2016 but he has no idea how to address the autoantibodies, or about the necessary cancer checks b/c of potential paraneoplastic syndromes, and he has no experience with high dose IVIG or Rituximab (RTX).

    The two doctors who have saved my life are Dr. K at OMI and my mast cell (MCAS) doctor. No supplement that I could have found on-line would have helped me b/c I tried them for 1.5 years before I found OMI. And I am still trying supplements now (like M-B-12 & Folate) b/c my blood tests for these are abnormally low. I appreciate the thoroughness of the blood work b/c it definitively ruled out certain things (like Lyme & TBD's) and found the autoantibodies.

    Am sorry for the long-winded answer and I hope it addressed your question! Apologies if it didn't and please feel free to PM me if I can be of any help.
     
    Last edited: Apr 12, 2017
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  19. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I second this. I've had instances where doctor's offices wanted to charge a fee ($25 or so) to supply records in order to cover the time they spent supplying them. Once I paid the money, they sent the records. You could offer something nominal like this and see if that makes any difference.
     
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  20. TrixieStix

    TrixieStix Senior Member

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    Just to put this information out there in case someone needs it now or in the future. Good info to have. I was not aware of these changes myself until just now. 2015 NYT article...

    "The three companies will also establish a six-month waiting period before reporting medical debts on consumers’ credit reports, providing more time for consumers to resolve issues that might amount only to a delayed insurance payment or another dispute. The credit agencies will also remove medical debts from an individual’s report after the debt is paid by insurance."

    https://www.nytimes.com/2015/03/10/...es-to-overhaul-error-fixing-process.html?_r=0
     
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