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Should I see Dr. Chheda? & General questions about treatment

Messages
35
I have been waitlisted since October to see Dr. Kaufman at the Center for Complex Diseases in Mountain View and just got a call; they told me Dr. Kaufman is moving to Seattle. They still asked me if I wanted to see him there - I guess people travel to see him, but I would prefer to see somebody local. I have an option to see Dr. Chheda instead, who I understand is the other senior doctor on staff. I have to decide whether to see her in March or take my name off the waitlist.

This is further complicated by some good news - fortunately, in the months that I have been on the waitlist, my worst presenting symptom (the one that drove me to get treatment) - daily dizziness and light-headedness -- has basically gone away on its own, for no special reason, and it happened pretty suddenly. This doesn't mean it can't come back at any time, and for any reason, as I have struggled on and off with these symptoms through periods of my life. I still have other chronic symptoms but they are more manageable.

I'm wondering if forum members might be able to shed some light on any or all of these questions:

1) Is Dr. Chheda a good surrogate for Dr. Kaufman? Any positive experience there? I have done a search history and read some positive and negative things. Feel free to DM me if you want a private discussion.
2) Does it make sense for me to come in when my worst symptom has abided and I'm in (relatively) better shape than I was when I made the appointment? Will things still show up on tests? Can progress still be measured? It might be better to hold on to my $2,000 ($1k per visit with 2 visit minimum, not covered by insurance) until a time when I feel worse, but the problem is that, with the waitlist, there's no guarantee of how I will be feeling when the time comes up to go and see her. Wondering in general how CFS/ME patients deal with this dilemma. Note that I have never been "officially" diagnosed with CFS/ME.
3) Do others feel that it is worth the time and money investment to see a specialist in CFS/ME when there is no known effective cure or treatment anyway. What's the best case scenario that I can hope for?

Appreciate any insights or opinions on these matters. Thanks in advance! Wishing all here the best possible outcome in their health journeys.

Patiently Waiting
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
I've not seen Dr. Chheda myself, but I know that Dr. Kaufman holds her in high esteem. They worked closely together and I believe she is well-versed in the same treatments and approaches as he is. Because I was already traveling to see Dr. Kaufman, I will continue to do so, but if I were still a denizen of the Bay Area, I wouldn't hesitate to see Dr. Chheda.
 

geraldt52

Senior Member
Messages
602
...This is further complicated by some good news - fortunately, in the months that I have been on the waitlist, my worst presenting symptom (the one that drove me to get treatment) - daily dizziness and light-headedness -- has basically gone away on its own, for no special reason, and it happened pretty suddenly...

First off, I have no experience with Dr Chheda myself, so I can't help you with that decision.

As far as saving the $2K, I'd definitely be in that camp. Had you gotten in to see the doctor immediately, you would have undoubtedly attributed your improvement to seeing the doctor, when in fact it had everything to do with the characteristic waxing and waning nature of CFS, and nothing whatsoever to do with a doctor/treatment. There is a lesson there. There have been doctors who report that it isn't unusual for PWME who have gotten no "treatment" to be better off than those who have followed every false trail. There is a lesson there as well.

Why not keep an appointment with both doctors and cancel it when it gets close, if you're doing OK? It isn't like they are having trouble filling up their schedules, so no harm, no foul.
 
Messages
35
First off, I have no experience with Dr Chheda myself, so I can't help you with that decision.

As far as saving the $2K, I'd definitely be in that camp. Had you gotten in to see the doctor immediately, you would have undoubtedly attributed your improvement to seeing the doctor, when in fact it had everything to do with the characteristic waxing and waning nature of CFS, and nothing whatsoever to do with a doctor/treatment. There is a lesson there. There have been doctors who report that it isn't unusual for PWME who have gotten no "treatment" to be better off than those who have followed every false trail. There is a lesson there as well.

Why not keep an appointment with both doctors and cancel it when it gets close, if you're doing OK? It isn't like they are having trouble filling up their schedules, so no harm, no foul.

Solid advice Geraldt, thank you. The CCD does ask for a $500 deposit upfront but I think it is refundable if visit is canceled within 15 days.
 

Diwi9

Administrator
Messages
1,780
Location
USA
@PatientlyWaiting - I am a patient of Dr. Chheda and have had a good experience with her. But yes, it is expensive. The upfront costs were great not just because of the initial fee, but also because I had a lot of diagnostic lab work performed. She is mindful of costs and you can discuss with her limiting tests to what is covered by your insurance. Some of the tests they often run are from private labs like IGeneX/Cunningham Panel/CellTrend and I'm aware that some insurance plans will not cover these lab costs. All that said, while the first appointment is expensive, she is very thorough in wanting to learn your health history.

I don't know your specific health history, but based on my experience, she is likely to try to screen you for issues like MCAS and POTS, as these are complications of ME/CFS that can be treated. She may also screen you for current or past infections looking for indications of viral exposures or Lyme.

My understanding is that Dr. Chheda can be a bit more thorough with lab diagnostics up front than Dr. Kaufman. They follow similar treatment protocols. It has been my observation that Dr. Kaufman may be a bit more proactive is seeking autoimmune treatments like IVIG and Rituxan, although Dr. Chheda does have patients on these therapies too.

Some people have found it useful to see a practitioner at the Center for Complex Diseases while also working with a functional medicine doctor. The doctors at CCD do include supplement recommendations in many of their treatment protocols, but a functional medicine doctor may be willing to go farther than the group at CCD.

My experience with Dr. Chheda is that treatments starting slowly as she screens different therapies to see what will work. At first I was frustrated with the speed, but in hindsight it makes sense. I am now on a thorough POTS protocol and she eliminated my SIBO issues.

I hope my you are able to find the medical support you need. Feel free to PM me if you have specific questions.
 
Messages
35
As far as saving the $2K, I'd definitely be in that camp. Had you gotten in to see the doctor immediately, you would have undoubtedly attributed your improvement to seeing the doctor, when in fact it had everything to do with the characteristic waxing and waning nature of CFS, and nothing whatsoever to do with a doctor/treatment. There is a lesson there. There have been doctors who report that it isn't unusual for PWME who have gotten no "treatment" to be better off than those who have followed every false trail. There is a lesson there as well.

Geraldt - I'm wondering what the lesson is to be learned here. It feels almost futile to seek treatment; since the disease can wax and wane in phases on its own, it can be hard if not impossible to correlate with certainty that any particular treatment has helped. You're absolutely right that if I had seen Chheda in the last few months I would be attributing my marked decrease in dizziness and light-headedness to whatever treatment she had recommended. What are your thoughts on this, or thoughts from the community ? Can we ever be sure anything is working and is there still a point for seeking treatments ? Maybe in the end it doesn't matter so long as we feel better. It just feels like so much that I read is anecdotal or even contradictory, what works for one person may not work for another, and people get worse or better either because of or in spite of or maybe completely irrelevant to, treatments. All makes for a pretty confusing landscape to operate in and make decisions. End of my rant. Thanks.
 

geraldt52

Senior Member
Messages
602
Geraldt - I'm wondering what the lesson is to be learned here.

JMO, but the "lesson" is that, lacking a biomarker, patient and doctor reports of "improvement" are unreliable and not worth me chasing after...not in financial terms, and not in terms of all the potential side effects. The results of the Rituxan trial illustrated that in spades. I spent a couple of decades chasing rainbows, and now nearly another couple of decades with effectively zero treatment, and the results have been better overall with zero treatment.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
My understanding is that Dr. Chheda can be a bit more thorough with lab diagnostics up front than Dr. Kaufman.

LOL, what's that like? On my first visit with Dr. K (in 2015) I had at least 2 dozen tubes of blood drawn! It's hard to get a vein to last through that much blood drawing, but the phlebotomist was excellent. Unfortunately, the last time I had blood drawn in the area they sent me to the Quest down the street and an inexperienced phlebotomist made a mess of it. She almost passed out herself! She tried to do it without a butterfly needle with an extension—just holding the needle in her hand. She had to call someone else in to take her place halfway through and she injured a nerve in my arm. Off topic, maybe, but I'd stay away from that Quest lab!
 
Messages
70
I see Dr. Chheda and she has been quite thorough and helpful for me. I originally decided to see her because I wanted to get screened for MCAS and the wait for Dr. Kaufmann was too long. She was thorough in her workup and had over 30 vials of blood drawn, though it didn't turn up much of anything.

She has been very open minded about all of the stuff I tried on my own without a doctor (mold avoidance, fasting) and recommended more of it. She also gave me a long list of things to trial. Most of them didn't work but methyl B12 shots made me feel better within 24 hours. The difference was very clear and it has been sustained for over 6 months now. I am now back to work full time so the cost has been worth it, but my outcome probably isn't typical.

One thing to consider on spending the $2k now is that when/if you get worse you will already be a regular patient and be able to schedule an appointment more quickly. The initial screening and intake will be done so you won't be dealing with that while also flaring.
 
Messages
70
What was your serum B12 level before the shots and what is it now?

I can't find my last B12 test and I haven't tested it after starting the shots. I have had my serum B12 levels tested regularly over the years and it has never been low. As serum tests just pick up what is circulating in your blood and not what is being absorbed, it's possible to have a decent serum level but still be deficient.

Dr. Chheda prescribed the shots because of a MTHFR variant not based on a serum test. It made a very noticeable difference in my energy levels and I am in remission now, as long as I continue to avoid triggers.