Which doc? Kaufman/ Chheda or Montoya?

[StarChild56]

I just had an appointment (follow up) about 1 month ago.

 

[ebethc]

No, they are not. None of my follow up visits have been near $800.

I'm guessing the $800 is including testing (SIBO is close to $200 and that is one that is often given during 1st/2nd visit) of some sort.

ha... I just added SIBO to my edited response above! It seems to be ubiquitous in our community...

 

[StarChild56]

ha... I just added SIBO to my edited response above! It seems to be ubiquitous in our community...

It seems like it is, I was positive and did the antibiotics.

 

[Gingergrrl]

I had an appt last week and it was $550.

I never did the SIBO test with Dr. K (and did it locally w/a different doctor so it was covered by insurance at the time) and it was negative. I seem to be one of his few patients who was negative for SIBO.

 

[Diwi9]

The initial appointment at CCD is long, so maybe they have a new fee structure in place for that reason? As an established patient, my follow-ups are one hour and $550.

My initial appointment at Stanford was $881 for an hour consult. I believe follow-ups are the same cost at Stanford. This is one expensive illness...but, I fully intend to stick with Dr. Chheda. I really appreciate her attention to and treatment of my case.

@Gingergrrl - I was negative for SIBO too, but false negatives are normal. FWIW - we did treat it with Rifaximin and I responded to treatment with 10 days of remission. Did you report IBS symptoms? Mine have improved enormously with treatment and maintained with an altered diet (strictly no wheat, and follow keto).

 

[ebethc]

I was negative for SIBO too, but false negatives are normal. FWIW - we did treat it with Rifaximin and I responded to treatment with 10 days of remission. Did you report IBS symptoms? Mine have improved enormously with treatment and maintained with an altered diet (strictly no wheat, and follow keto).

did rifaximin make you sick? I took nystatin a long time ago, and it made me very sick, but it's not quite the same thing.. also, does rifaxamin kill good bacteria?

can you tolerate other carbs, or is it just wheat (which may not be carb sensitivity)?

 

[Diwi9]

did rifaximin make you sick? I took nystatin a long time ago, and it made me very sick, but it's not quite the same thing.. also, does rifaxamin kill good bacteria?

can you tolerate other carbs, or is it just wheat (which may not be carb sensitivity)?

Rifaximin is poorly absorbed, so pretty much limited to the GI tract. I would assume it also kills good gut microbes.

I had no negative reaction to Rifaximin. I did a follow up a treatment a few months later with Rifaximin and Flagyl...the Flagyl made me very sick and I never want to take the stuff again.

Wheat seems to be a particular trigger for IBS, but I have problems utilizing carbs in general now. After relapse I had fast weight gain (30 lbs.). Keto has helped me drop 18 lbs. I have reduced bloating and better cognitive functioning. It's not a fun diet, but seems to work.

 

[ebethc]

Rifaximin is poorly absorbed, so pretty much limited to the GI tract. I would assume it also kills good gut microbes.

I had no negative reaction to Rifaximin. I did a follow up a treatment a few months later with Rifaximin and Flagyl...the Flagyl made me very sick and I never want to take the stuff again.

Wheat seems to be a particular trigger for IBS, but I have problems utilizing carbs in general now. After relapse I had fast weight gain (30 lbs.). Keto has helped me drop 18 lbs. I have reduced bloating and better cognitive functioning. It's not a fun diet, but seems to work.

I tried Keto, but I can't tolerate a lot of saturated fat... Has this been a problem for you? How much fat do ppl eat on keto, and what types of fat?

 

[Diwi9]

I tried Keto, but I can't tolerate a lot of saturated fat... Has this been a problem for you? How much fat do ppl eat on keto, and what types of fat?

Don't want to be too OT on this thread...but I have no problem with saturated fat. I have done strict keto and been more lax about counting macros...without any difference. I probably do higher protein than the strict keto. My fats mostly come from pasture-raised and finished beef (we purchase direct from a producer in Colorado), organic eggs, coconut oil, ghee, tahini (ground sesame seeds), organic dairy, and avocados.

 

[ebethc]

I just called their office (the Center for Complex Diseases, 650-447-3001) to confirm prices.

Dr Kaufman and Dr Chheda prices June 2018

INITIAL APPOINTMENTS:
First Appointment: $800 .. $300 deposit at time of schedule, pay balance at time of 1st appointment
Second Appointment: $800 .. approximately 4 weeks later (review test results, make treatment plan)

BTW - SIBO test $200 in office, home kit is $240 (note: this is an additional cost)

FOLLOW UP VISITS
office $485 30 minutes, $585 over 30 minutes
phone $450 30 minutes, $550 over 30 minutes

 

[Gingergrrl]

The ppl on this board that I PM'ed all had SOME symptoms that overlapped w mine, but some had very different problems, and most ppl raved about him.. So, I think he provides very individualized care, which was one of the things that I was looking for...

This is absolutely true and the care is completely individualized. I think I know about 30-40 patients of CFCD (from this board, other boards, and in real life), with about 4-5 who are very close friends, and each of us has a different treatment plan. Everyone will undergo similar initial blood tests to help assess what is going on but then they will treat what they find whether it's what I would call "classic" ME/CFS, any immune system issues (immune deficiency or autoimmunity), POTS & Dysautonomia, MCAS, Lyme & tick borne diseases, SIBO, EDS, or whatever they find. They will also coordinate with other doctors, with insurance companies, etc. I've actually never experienced anything like it and I have paid for expensive doctors locally who honestly didn't do sh*t to help me.

As an established patient, my follow-ups are one hour and $550.

That is the same for me.

@Gingergrrl - I was negative for SIBO too, but false negatives are normal. FWIW - we did treat it with Rifaximin and I responded to treatment with 10 days of remission. Did you report IBS symptoms? Mine have improved enormously with treatment and maintained with an altered diet (strictly no wheat, and follow keto).

I did not report IBS symptoms b/c I did not have any. I did have some GI issues that were due to MCAS but once the MCAS was under control, they greatly improved. And once my MCAS went into remission, they went away. I would not take an antibiotic, at this point, unless my life depended on it (like I had sepsis or something life-threatening). I do not tolerate most antibiotics for various reasons and after my neurotoxic reaction/near tendon rupture from Levaquin, it is not worth the risk (for me). I believe my SIBO test was truly negative, as did the GI specialist who ran it.

INITIAL APPOINTMENTS:
First Appointment: $800 .. $300 deposit at time of schedule, pay balance at time of 1st appointment
Second Appointment: $800 .. approximately 4 weeks later (review test results, make treatment plan)

FOLLOW UP VISITS
office $485 30 minutes, $585 over 30 minutes
phone $450 30 minutes, $550 over 30 minutes

That is interesting and I had no idea their fees went up. It's good for me to know b/c I have referred many people there. Does the $800 include the SIBO test or is that separate? I know it is not mandatory b/c I did mine with a local GI doctor. My first consult (when they were still with OMI) was four years ago (2014) and IIRC, the fee was around $350! I went back two weeks later to go over my test results which IIRC was also $350. I knew they increased their fees but I thought the cap was $550 (for appts that were an hour or longer). I agree it is expensive but the appts are infrequent and the lab tests and treatments are all covered by insurance (although not without many long struggles and insurance appeals).

 

[ebethc]

This is absolutely true and the care is completely individualized. I think I know about 30-40 patients of CFCD (from this board, other boards, and in real life), with about 4-5 who are very close friends, and each of us has a different treatment plan. Everyone will undergo similar initial blood tests to help assess what is going on but then they will treat what they find whether it's what I would call "classic" ME/CFS, any immune system issues (immune deficiency or autoimmunity), POTS & Dysautonomia, MCAS, Lyme & tick borne diseases, SIBO, EDS, or whatever they find. They will also coordinate with other doctors, with insurance companies, etc. I've actually never experienced anything like it and I have paid for expensive doctors locally who honestly didn't do sh*t to help me.

Yes, this is so critical, b/c, IMO, CFS is a "bucket" of many undefined immune illnesses, vs a single illness or a even a single illness w subtypes.. (It's all debate-able, but nobody really knows)... I think this is one of the reasons it's so difficult to pin down a cure..ie .. a single cure is the wrong way to even frame the problem. (e.g. Montoya's approach = take antivirals.. which helps a lot of ppl, but not comprehensive or help for everyone..)

I have paid for expensive doctors locally who honestly didn't do sh*t to help me.

One of the first things that you learn about this illness is that throwing money at the problem w so-called "experts" does nothing. (There's no shortage of posts on the Mayo Clinic on this forum!) And often times, you're paying ppl to gaslight you b/c they can't treat you w dignity and simply say, "I'm sorry, but the science just isn't there yet. There's a tsunami of immune illnesses that have hit our species in the past generation or two, and the research has not caught up w demand for cures." When there's a cure, I want to take out ads listing all the doctors who gaslit me w links to the research proving me right. (or something similarly shaming....).. It's a stupid idea b/c one thing we know for sure in 2018 is that facts don't change opinions, but it still makes me laugh.

That is interesting and I had no idea their fees went up.

Their fees have gone up dramatically in the last 4 years (including their time at the other practice...)

Does the $800 include the SIBO test or is that separate?

nope, SIBO is separate...

I wish Pineapple (or some other rich person) would subsidize the clinic so that everyone could afford to go there... It would accelerate research and reduce so much suffering... OMI could justify spending some of Pine's money on doing this b/c (I believe) they get blood from CFS patients in that office, so, really, it's only paying back patients for participating in research... I'm guessing this would not occur to them in a million years... Why pay research subjects when you can get them to participate for free?

 

[ebethc]

Wheat seems to be a particular trigger for IBS, but I have problems utilizing carbs in general now. After relapse I had fast weight gain (30 lbs.). Keto has helped me drop 18 lbs. I have reduced bloating and better cognitive functioning. It's not a fun diet, but seems to work.

I'm not sure I understand... What caused the weight gain? do you think it's the poor utilization of carbs? thanks for clarifying..

 

[StarChild56]

I just called their office (the Center for Complex Diseases, 650-447-3001) to confirm prices.

Dr Kaufman and Dr Chheda prices June 2018

INITIAL APPOINTMENTS:
First Appointment: $800 .. $300 deposit at time of schedule, pay balance at time of 1st appointment
Second Appointment: $800 .. approximately 4 weeks later (review test results, make treatment plan)

BTW - SIBO test $200 in office, home kit is $240

FOLLOW UP VISITS
office $485 30 minutes, $585 over 30 minutes
phone $450 30 minutes, $550 over 30 minutes

The first and second appointment price have gone up since I mine. But, Dr. Kaufman is worth it to me if you can pay it. I'm glad the follow up visits are less than those initial visits.

Thanks for the update.

 

[Diwi9]

I'm not sure I understand... What caused the weight gain? do you think it's the poor utilization of carbs? thanks for clarifying..

Yes, something changed in my metabolism when I relapsed. At the time I was still working (multiple jobs) and very physically active. I try to follow a healthy diet, but gained most of the weight in a three month period of time and began to have constant abdominal bloating. I do not think this diet works for everyone with ME/CFS, but it is the only one that limits some symptoms for me. I've gone on and off of it a few times and find that I do better on it...so I'm trying to stick with it.

 

[HeleneG]

One thing that is annoying is that Dr. Chheda used to work for Sutter in Walnut Creek. That would have been close and free for me. But that's the way it goes. I'm pretty sure I'll make an appointment though and if it helps the money will be worth it.

 

[ebethc]

Yes, something changed in my metabolism when I relapsed. At the time I was still working (multiple jobs) and very physically active. I try to follow a healthy diet, but gained most of the weight in a three month period of time and began to have constant abdominal bloating. I do not think this diet works for everyone with ME/CFS, but it is the only one that limits some symptoms for me. I've gone on and off of it a few times and find that I do better on it...so I'm trying to stick with it.

were you on the keto diet when you gained? was the "healthy diet" the keto diet?

For me, there's def a link between weight gain and CFS.. I've been sick since I was a kid, and got significantly worse after a few bad viral infections (college, then years later). I was an active healthy kid, and remember getting sick ... something in my metabolism changed and I started gaining weight... I continued to be active and was a good student, but I had to push so hard.. It was like I was jet lagged all the time.. and I was still 15 pounds overweight.. During my 20s I went thru a phase where I exercised SO hard to lose weight and it almost killed me... I did it, but did NOT feel better - I felt worse.

I've tried every diet, both for weight loss and CFS... There's def some overlap w my CFS and my metabolism.. Low carb is helpful sometimes but not all the time.. Intermittent fasting is currently helpful.. I do 16:8 b/c anything else is too extreme (16 hours fasting, 8 hour window of calorie consumption).. I feel like my digestion just needs long breaks..

 

[ebethc]

One thing that is annoying is that Dr. Chheda used to work for Sutter in Walnut Creek. That would have been close and free for me. But that's the way it goes. I'm pretty sure I'll make an appointment though and if it helps the money will be worth it.

If it's any consolation, I think there are 3 reasons that it would not have been as helpful to see her at Sutter

1. I bet she's learned a lot from Kaufman... He's been around a LONG time.. he worked on AIDS/HIV care in NYC in the early or early-ish days and that's one of the reasons he seems to have such a deep understanding of the immune system.. He probably has a lot to teach other clinicians... She would not have had this insight back in her Sutter days..

2. I believe from a legal/risk mitigation perspective, doctors in healthcare networks like Sutter and Stanford really need to color inside the lines...I think you go to those places and get protocol A, B or C, which is defined at the top of the hierarchy (chief of immunology, etc.).. CFS is YEARS from that model and level of understanding... That's the criticism of independent clinics - that they are trying things that aren't safe.. I have never heard of anyone being harmed by Dr K, and there is inherent risk in any serious treatment.. I think CCD is completely trustworthy in this sense...

3. those networks are designed around biological systems and "mature" illnesses... They're not designed for multi-system illnesses.. e.g., you go to GI doctors for GI problems, Rheumatologists for RA or Lupus (but they're probably not going to tell you to go on an elimination diet... see the blog "Don't Eat That" for an amazing story of RA recovery thru diet..) or you're going to go to a cancer institute for cancer (sloan kettering, anderson in tx.. if you have the money)... The typical health network sucks for multi-system illnesses..

 

[Diwi9]

@HeleneG - I agree with @ebethc regarding the advantage of Dr. Chheda being with Dr. Kaufman being a huge advantage. Their practice is not passive, they are active in following research leads and work with Ron's research group at Stanford. This is a progressive practice that will examine your symptoms on an individual basis and try to improve your situation.

@ebethc - I have always been in shape and an athlete. When I started to gain the weight, I didn't understand what was going on and was not on keto. I could not take the weight off until keto, and dieting makes me feel awful, keto does not.

 

[HeleneG]

If it's any consolation, I think there are 3 reasons that it would not have been as helpful to see her at Sutter

1. I bet she's learned a lot from Kaufman... He's been around a LONG time.. he worked on AIDS/HIV care in NYC in the early or early-ish days and that's one of the reasons he seems to have such a deep understanding of the immune system.. He probably has a lot to teach other clinicians... She would not have had this insight back in her Sutter days..

2. I believe from a legal/risk mitigation perspective, doctors in healthcare networks like Sutter and Stanford really need to color inside the lines...I think you go to those places and get protocol A, B or C, which is defined at the top of the hierarchy (chief of immunology, etc.).. CFS is YEARS from that model and level of understanding... That's the criticism of independent clinics - that they are trying things that aren't safe.. I have never heard of anyone being harmed by Dr K, and there is inherent risk in any serious treatment.. I think CCD is completely trustworthy in this sense...

3. those networks are designed around biological systems and "mature" illnesses... They're not designed for multi-system illnesses.. e.g., you go to GI doctors for GI problems, Rheumatologists for RA or Lupus (but they're probably not going to tell you to go on an elimination diet... see the blog "Don't Eat That" for an amazing story of RA recovery thru diet..) or you're going to go to a cancer institute for cancer (sloan kettering, anderson in tx.. if you have the money)... The typical health network sucks for multi-system illnesses..

Thanks for your comprehensive response. I hadn't thought about the fact that actually Sutter Health sucks, so even with the same doctor the care would be different. I am feeling more comfortable paying thousands out of pocket after hearing from you all.