My Experience With Dr. Kaufman at the Open Medicine Institute

[Erica.N]

Hello Erica, I would like to see Dr. Kaufmann next year too. Did you make you appointment recently? I was wondering about how long is waiting time for new appoitments these days.

I'm scheduled to go since 2015. and then rescheduled in 2016. I do not think he's scheduling new patients. I do not know how the waiting time is.

 

[Junior]

is the consult $455 and what is the total estimated costs for severe cases? candida, lyme, parasites, roundworms, bacterial overgrowth, adrenals dysregulation/thyroid

 

[RUkiddingME]

I'm going to see Dr. KAufman, soon. Would you like to know how much you spent on exams?

Hi Erica, sorry it took me so long to reply. I had not seen your message for a while and after I saw it I could not find my invoices from my clinic visits. The first visit in 2012, my lab tests cost me 1,565 after a discount because we paid with credit card and another set of tests done in 2015 cost $ 1,600. Everyone is different, and different tests can be ordered but at least this can give you some idea. I'm assuming you don't have American health insurance like me. Both times I went I was only at the clinic for my appointment and didn't need to stay any longer. I just stay en extra day at the hotel to recoup and to rest before travel. I'm sure they can tell you before you go if they need you there for more than a day. Good luck

 

[Junior]

Hi Erica, sorry it took me so long to reply. I had not seen your message for a while and after I saw it I could not find my invoices from my clinic visits. The first visit in 2012, my lab tests cost me 1,565 after a discount because we paid with credit card and another set of tests done in 2015 cost $ 1,600. Everyone is different, and different tests can be ordered but at least this can give you some idea. I'm assuming you don't have American health insurance like me. Both times I went I was only at the clinic for my appointment and didn't need to stay any longer. I just stay en extra day at the hotel to recoup and to rest before travel. I'm sure they can tell you before you go if they need you there for more than a day. Good luck

couple of questions if you don't mind me asking
how severe is your health if you do mind me asking? did it take long for them to complete treatment? that estimate sounds like it would be in my ballpark.
Did Dr. Kaufman know what caused your illnesses and ordered tests for mycoplasma, lyme, SIBO, candida and other infections, etc? What were the lab results/findings?

 

[RUkiddingME]

couple of questions if you don't mind me asking
how severe is your health if you do mind me asking? did it take long for them to complete treatment? that estimate sounds like it would be in my ballpark.
Did Dr. Kaufman know what caused your illnesses and ordered tests for mycoplasma, lyme, SIBO, candida and other infections, etc? What were the lab results/findings?

Hi there, I have been sick for over seven years. I was in a wheelchair within 10 months of onset. Like most of us the illness started after a flue like illness. I now function at about 35% of normal. I have HHV6, EBV and SIBO and positive for MTHFR gene c677. I was on Valcyte for three years. The Valcyte got me out of bed after being bedridden for nine months in 2011/2012. After a while I saw no more benefit plus I had been on it for too long. I am following a restorative movement program now that I find very helpful.

 

[TrixieStix]

is the consult $455 and what is the total estimated costs for severe cases? candida, lyme, parasites, roundworms, bacterial overgrowth, adrenals dysregulation/thyroid

actually the cost per appt @ OMI is now or soon to be $585 I believe. At my appt there last month it was still $525 but a sign said it was soon going up to $585 but i forget what date the increase was scheduled to take place.

 

[geraldt52]

actually the cost per appt @ OMI is now or soon to be $585 I believe. At my appt there last month it was still $525 but a sign said it was soon going up to $585 but i forget what date the increase was scheduled to take place.

Is that for the initial appointment, or every appointment?

 

[ebethc]

Is that for the initial appointment, or every appointment?

I think it's every appt...

 

[TrixieStix]

@geraldt52 That is the cost for every appt. Phone appts cost the same if they are 90 minutes or longer. For phone appts that are less than 90 minutes the appt charge is slightly less.

And of course for those of us who live in another state or another country there is the added cost of travel to OMI. In my case I have been told that I will need to be seen in person @ OMI every 6 months with phone appts between in-person appts.

 

[geraldt52]

@geraldt52 That is the cost for every appt. Phone appts cost the same if they are 90 minutes or longer...

I have to say that I find that to be outrageous. I appreciate it when doctors try to help desperate people with CFS but, honestly, that smacks of profiting off of desperate people with CFS.

Given that there really aren't any treatments shown to be effective for CFS, I can't exactly see what could possibly justify that sort of charge after initial testing rules other conditions out...Rxs, for anti-virals, anti-fungals, anti-biotics, none of which have been shown to have long term benefit? Many, or most, people are having to pay these charges out of pocket on a disability income.

I don't mean to rant, and certainly people are free to make up their own mind, but I'm not OK with people being charged that kind of money for experimentation. I'd like to see the data that any of their "treatments" have worked...

 

[Gingergrrl]

I have to respectfully disagree and the level of improvement that I have had from high dose IVIG has already exceeded my wildest expectations. Three Neuros turned me down but OMI fought for months with my insurance until my IVIG was approved and would not take no for an answer. No doctor on earth has done more for me than my doctor at OMI and if I get better to the point that I can walk without a wheelchair (which I have not done in 2.5 years) I owe him my life.

They are the one place that I know will never give up on me (no matter how weird or obscure my symptoms and antibodies are) and they bring me hope. They are not getting government or insurance funding so they have to charge patients a fee for visits and phone calls. But the hours that they have spent advocating for me (for my disability which I got on the first try thanks to their help), to get treatments and meds covered by insurance, etc, are all unpaid hours compared to what I have paid in visits/phone calls.

And my insurance covers all blood tests, medical procedures & scans, meds, etc, all of which I do locally. With the exception of my MCAS doctor (who is not part of OMI), no doc has ever fought so hard for me. My local Endo who monitors my thyroid condition (Hashimoto's Disease) does not take any insurance and charges $330 per visit (and I see him 3-4x per year). Doctors in CA are not cheap. I wish they were but it is not the reality.

If OMI ultimately discovers a solid treatment through Ron Davis or one of their studies, everyone will be glad that they had the money to do so. I wish the NIH would fund Ron Davis's work but they will not. OMI is not ripping off patients, I promise this is not the reality. I know they do not need me to defend them but I feel such gratitude to them, it was hard not to reply.

 

[KristenSF]

I don't have the energy to type all I feel about this, so I'll just say I agree with @Gingergrrl

We see the same doctor at OMI, and I don't think anyone affected by this disease could meet him and think he's motivated by profit. I do respectfully acknowledge that skepticism is a useful tool, but my doctor passes the sniff test.

 

[RUkiddingME]

I have to respectfully disagree and the level of improvement that I have had from high dose IVIG has already exceeded my wildest expectations. Three Neuros turned me down but OMI fought for months with my insurance until my IVIG was approved and would not take no for an answer. No doctor on earth has done more for me than my doctor at OMI and if I get better to the point that I can walk without a wheelchair (which I have not done in 2.5 years) I owe him my life.

They are the one place that I know will never give up on me (no matter how weird or obscure my symptoms and antibodies are) and they bring me hope. They are not getting government or insurance funding so they have to charge patients a fee for visits and phone calls. But the hours that they have spent advocating for me (for my disability which I got on the first try thanks to their help), to get treatments and meds covered by insurance, etc, are all unpaid hours compared to what I have paid in visits/phone calls.

And my insurance covers all blood tests, medical procedures & scans, meds, etc, all of which I do locally. With the exception of my MCAS doctor (who is not part of OMI), no doc has ever fought so hard for me. My local Endo who monitors my thyroid condition (Hashimoto's Disease) does not take any insurance and charges $330 per visit (and I see him 3-4x per year). Doctors in CA are not cheap. I wish they were but it is not the reality.

If OMI ultimately discovers a solid treatment through Ron Davis or one of their studies, everyone will be glad that they had the money to do so. I wish the NIH would fund Ron Davis's work but they will not. OMI is not ripping off patients, I promise this is not the reality. I know they do not need me to defend them but I feel such gratitude to them, it was hard not to reply.

Oh Gingergirl that is music to my ears! I am thrilled that you are improving on the IVIG ! You deserve a break!! Got your message last night. Will reply soon xo

 

[Gingergrrl]

Oh Gingergirl that is music to my ears! I am thrilled that you are improving on the IVIG ! You deserve a break!! Got your message last night. Will reply soon xo

Thanks @RUkiddingME and I look forward to chatting w/you further as soon as we both have time!

 

[bspg]

@Gingergrrl & @jeff_w

I've read many of your posts regarding your experiences at OMI. Thank you both SO much for sharing your experiences with us. I'm currently considering becoming a patient at OMI (my first ever visit to a CFS specialist) and am wondering what your opinions are now, a few years since starting treatment at OMI.

The reason I'm asking is because I don't live in CA and don't have insurance that will pay for my care there, so it's going to be literally thousands of dollars out of pocket for me to do this. This is a HUGE expenditure for me, and something I really cannot afford, unless it's very likely to make a difference in my functional abilities and/or quality of life (I've been homebound for the last year).

I know that you both had insurance that covered a lot of your testing and medications at the time. But if you had to pay for everything out of pocket, do you think that your treatment at OMI has been worth thousands of dollars? Looking back, is there anything you would like to have done differently?

Thanks

 

[TrixieStix]

I

@Gingergrrl & @jeff_w

I've read many of your posts regarding your experiences at OMI. Thank you both SO much for sharing your experiences with us. I'm currently considering becoming a patient at OMI (my first ever visit to a CFS specialist) and am wondering what your opinions are now, a few years since starting treatment at OMI.

The reason I'm asking is because I don't live in CA and don't have insurance that will pay for my care there, so it's going to be literally thousands of dollars out of pocket for me to do this. This is a HUGE expenditure for me, and something I really cannot afford, unless it's very likely to make a difference in my functional abilities and/or quality of life (I've been homebound for the last year).

I know that you both had insurance that covered a lot of your testing and medications at the time. But if you had to pay for everything out of pocket, do you think that your treatment at OMI has been worth thousands of dollars? Looking back, is there anything you would like to have done differently?

Thanks

I am also a patient at OMI. They do not accept insurance of any kind for office visits and follow-up phone appts. All OMI patients are paying for it themselves. The only thing some patients are able to get covered by insurance is lab tests. I also do not live in California.

In my case I have Medicare and also Medicaid as secondary to pick up the portion Medicare doesn't cover, but my Medicaid coverage is only valid in the state where I live. Because of this I had some of the blood testing my OMI doctor ordered done at a Quest lab in my home state rather than California.

 

[Gingergrrl]

@bspg You can PM me if you want more detailed info but absolutely 100% yes, OMI was worth it for me. My insurance covered all blood work (close to 100%) and covers most meds. But no office visits or phone calls with OMI are covered and are strictly private pay (whether you are a CA resident or come from another country).

It is expensive, but doctors in my state are expensive across the board, and my doctor at OMI is only slightly more expensive than the Endo that monitors my thyroid 3-4x a year. Once you do the initial office visits and testing, it is not something you would be doing on a regular basis. I communicate w/my doctor via e-mail and he sends me lab slips via e-mail for blood tests which I can do at my local lab and he can access the results. We also coordinate a lot over the phone.

My doctor at OMI is the best doctor I have ever had in my life and there is no ego involved, his only goal is to get me better. I am not certain I would be alive today without his help and am not exaggerating. We constantly change things as we get new information (including my diagnosis) and nothing is too rare or weird or obscure. I am treated with respect and dignity and am always left with a sense of hope.

My doctor will advocate with my insurance when there is an injustice and helped me to get approved for disability on the first go-round. I really cannot say enough positive things. I do a lot of research and am pro-active which helps the process a lot as well. Hope this helps.

 

[bspg]

In my case I have Medicare and also Medicaid as secondary to pick up the portion Medicare doesn't cover, but my Medicaid coverage is only valid in the state where I live. Because of this I had some of the blood testing my OMI doctor ordered done at a Quest lab in my home state rather than California.

Thanks @TrixieStix. I only have Medicaid right now and can only use it in my home state as well.

My doctor at OMI is the best doctor I have ever had in my life and there is no ego involved, his only goal is to get me better. I am not certain I would be alive today without his help and am not exaggerating. We constantly change things as we get new information (including my diagnosis) and nothing is too rare or weird or obscure. I am treated with respect and dignity and am always left with a sense of hope.

Thanks @Gingergrrl. I'm going to PM.

 

[Gingergrrl]

Thanks @Gingergrrl. I'm going to PM.

Sounds good and apologies if I am slow to reply but happy to share more about my experience via PM.

 

[Terry Chattsworth]

Jeff, I just got a glowing review of Dr Kaufman from a friend, so I was about to call his office. I have CFS/ME, and like you, in the last several months it went from moderate (I could still sit at my desk and work during the day) to so severe I've been bed bound, since mid October.

It's been a few years since you started this thread. I hope if you're not yet cured, you're at least experiencing better health. Whenever you've got time for an update, I'd love to hear it. Thanks.