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Bay Area California Immunologist Who Tests CFS Co Infections?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by pemone, May 11, 2016.

  1. pemone

    pemone Senior Member

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    Is there any immunologist - or doctor who treats CFS - in the San Francisco Bay Area who would commonly test for viral and bacterial coinfections to CFS using the newer DNA test technology? Some of the specific pathogens are described here:
    https://www.holtorfmed.com/download...Chronic_Fatigue_Syndrome_and_Fibromyalgia.pdf

    I need a doctor who is in the system and takes a good insurance plan, preferably in their network instead of out of network. Getting coverage for these things out of network is very hard these days, thanks to Obamacare chasing the compensation levels to a place where doctors would make more money flipping burgers.

    If no doctor is available, is there a comprehensive list of pathogen tests kept on some website, preferably with the Labcorp test codes, so I could at least get the testing done through my regular physician?
     
  2. Kati

    Kati Patient in training

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    Hi @pemone

    You are lucky to have 2 maybe 3 good ME physicians around the Bay area. I doubt they take insurance though.

    The Open Medicine Institute group is based in Mountain View.
    Dr Jose Montoya is based at Stanford
    Dr Lily Chu is in family practice (not sure if she takes patients, she has ME herself) out of Burlingame I believe.

    Best wishes, Kati
     
  3. pemone

    pemone Senior Member

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  4. pemone

    pemone Senior Member

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    Dr Chu is no longer in practice. I think she is just affiliated with foundations and research organizations at this point.

    Dr Montoya's group has a multi-year wait time.

    Open Medicine is extremely expensive and they don't even operate as out of network in the insurance system. They are all about cash. It leaves a bad taste in my mouth.
     
  5. Kati

    Kati Patient in training

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    Hi @pemone, it might be worthwise to get your name added at Dr Montoya's clinic, just in case. And see if you could be added to a cancellation list of some sort.

    Also the other option for you might be to contact the local me support group if there is one and ask the question.

    I disagree when you say that OMI is all about cash. They are truly trying their best, and working with the patients to prioritize the labs so the expenses don't get out of control.

    You are asking former the clinics which are testing for coinfections. Testing is going to be expensive, it's not the clinic's fault.
     
    Last edited: May 16, 2016
  6. pemone

    pemone Senior Member

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    Right, Kati, but as all CFS patients know, the system is filled with cash-only doctors who cure nothing. You can literally drain your life's savings running around in circles. I've learned to use the system much more strategically and I minimize my contacts with cash-only doctors to the ones that can actually cure a particular condition.

    Stanford is covered by my insurance. And yes all services in the extremely broken US medical system are expensive. Hospitals charge $25 for a bottle of Ensure that costs $4 over the counter. Services that should cost $10K in an emergency room now cost $200K. That's why insurance is important.
     
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  7. halcyon

    halcyon Senior Member

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    The labs aren't really the problem as insurance will probably cover a lot of the bloodwork. It's the $600 or whatever office visits and the fact that they won't bill insurance for them.
     
  8. halcyon

    halcyon Senior Member

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    Unfortunately no I don't think so. The closest thing is Hip's roadmap, though no test codes are available there. Most of the testing that places like Stanford do is through Quest/Focus and not LabCorp. Enterovirus serology is available through LabCorp (sent along to ARUP) and I do have those test codes if you want.
     
  9. Kati

    Kati Patient in training

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    Everyone is sick, you know, you could have the best doctor in the world and still be sick. The story of Whitney Dafoe is quite telling. If you don't know, he is the son of a prominent Stanford scientist, Ron Davis, who cannot even get federal fundign to research ME. Whitney has been bedridden for a couple of years now, unable to tolerate any kind of sensory stimulation.

    Getting tested for co-infection will not guarranty that treating them will render you more functional. The viruses that many ME experts are testing for, they are highly prevalent in the healthy population. There is no proof that a particular virus perpetuates the illness. There is a lot we don't know, and governments have not been cooperating in finding the answers. There is a lot (well, relatively speaking) of research happening now, but no standard of care. Anti-virals may be helpful, or they may not work.

    I am sorry, it may not be the answers you are seeking. It can get very frustrating. You may be interested in the incoming #MillionsMissing protest which will happen in San Francisco. It would help in putting pressure on government to inject research funding in finding cause and cure, and also allow you to network with the locals.

    P.S. You may thinking that those with a socialized health care system are better off. Here in Canada, they don't test for virus titers. They send patients for group therapy. Getting access to the right physician is a good thing. Do not assume that these physicians, our ME drs, want to make money out of patients. They don't and they're not. Just renting office and paying the staff would be a hair pulling experience for the SIlicon Valley doctors.

    Best.
     
    Last edited: May 16, 2016
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  10. Vasha

    Vasha Senior Member

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    Hi @pemone -

    Re OMI, they don't bill insurance directly for office visits or infusions, but they are very good about giving detailed "superbills" that include the appropriate diagnoses etc to submit to insurance.

    The labs they use bill (at least my) insurance directly, and like any other direct-bill service, I don't see anything unless and until insurance doesn't cover all of it. The issue with the testing is that insurance companies don't always cover it. I've been lucky--my insurance company has covered everything, pretty much. Also, the main lab, Quest, is in-network for most (all?) insurance companies.

    If your insurance company is not so good, they will help you prioritize testing. My first round of testing was before I had insurance, and so we didn't do everything at that time.

    They also do pre-authorizations and appeals for medications etc.

    It's more hassle than Stanford, which direct-bills everything and has network deals with a lot of insurance companies, but it's not the case that OMI's services aren't covered. I wish they direct billed, but neither does my solo internist--I think solo doctors just cannot negotiate sustainable reimbursements with the insurance companies.

    One issue to be aware of is that insurance will reimburse at their quoted network rate--which I guarantee you will be much lower than that they would actually reimburse a huge hospital like Stanford that can get a good deal--and it is likely to be a lot lower than OMI's (not unreasonable compared to other specialists at all!) fees.

    OMI is very much not about the money-at least in no way I can tell. Currently, Dr. Kaufman's appointment fee for existing patients is $425/hour. The first appointment is more. This is about 1/2 of a lot of specialists.

    I hope this is helpful, and good luck finding a good doc for this testing.

    -Vasha
     
    Last edited: Jun 5, 2016
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  11. ebethc

    ebethc Senior Member

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    I was able to get an appt in montoya's clinic by agreeing to see a nurse practitioner... faster, if you're willing to go that route... I have not have my appt yet. fyi
     
  12. pemone

    pemone Senior Member

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    Yes, can you publish those codes here? It would be great to have that reference.
     
  13. pemone

    pemone Senior Member

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    Thanks to Obamacare (or maybe in spite of it), here is how the healthcare system works now:

    1) Cash-only doctor bills $600
    2) You file a claim with insurance, hoping to get 70% payment for an out of network service
    3) Unfortunately, the insurance company pays 70% of what *they think the service is worth*. In the current climate, that is typically as little as $75 for a specialist.
    4) I end up recovering 70% of $75, which barely pays my time to file the claim.

    It's not worth $600 to have an hour of false hope. I'm doing far more to cure myself currently than all of my doctors have done put together.

    It's the in-network coverage that is critical. That gives me 100% coverage of the office visit except for a $60 copay.
     
  14. halcyon

    halcyon Senior Member

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    The LabCorp test codes for enterovirus serology via ARUP are the following:

    • 816869 - Coxsackie B Virus Abs
    • 823361 - Echovirus (Frozen) Serum Ab Panel
     
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  15. pemone

    pemone Senior Member

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    I want to ask my original question in a different way. Have any of you with CFS attempted to visit an immunologist, and were they willing to humor you by running a check for obvious bacterial and viral co-infections?
     
    Clerner likes this.
  16. Clerner

    Clerner Senior Member

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    I was assessed by Dr Alexander Shikhman (phd and md) rheumatologist at the Institute for Specialized medicine. But, its in San Diego. He tested for all kind of viruses and Co infections. He is extremely knowledgeable about all kinds of chronic illnesses. Google Institute and see what you think.
     
    ebethc likes this.
  17. IreneF

    IreneF Senior Member

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    When I first started seeing Dr. Montoya he tested me for all kinds of infections. He specializes in both immunology and infectious disease.

    If your symptoms can be ascribed to anything else, then you no longer have a diagnosis of CFS.

    BTW, there was a thread on Holter a couple of years ago. IIRC, the clinics seemed to be all about the money and not the patients, so I would take any of their recommendation with a grain of salt.
     
  18. ebethc

    ebethc Senior Member

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    are you saying that if you do not have an infection (virual or bacterial), then montoya does not think that you have CFS?? thanks
     
  19. IreneF

    IreneF Senior Member

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    No. CFS is still a diagnosis of exclusion (since there is no test for it) so if you are found to have something else that explains your symptoms you don't have CFS. No one knows what causes CFS, or even if it is an infection, so the idea of a co-infection is questionable.
     
    ebethc likes this.
  20. frog_in_the_fog

    frog_in_the_fog Test Subject

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    I had a recent underwhelming experience with one of Dr. Montoya's assistants, perhaps they need more training on bedside manner. Just finding a doctor that could / would refer me to Stanford took close to four years. The wait to be seen by the clinic was originally estimated at a year. I got a call to schedule an appointment after about six months. Stanford seems to bill a wide variety of insurance plans. It truly has been a challenge just to get started on the path to a diagnosis. Good luck to everyone starting their journey of discovery.
     
    ebethc likes this.

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