Seeking information on long-term outcomes with Dr. Kaufman

[Ejw18]

Does anyone have any feedback on Dr. Chheda vs. Dr. Kaufman? I just called their appointment desk and Dr. C is taking new patients as early as Oct/Nov, while Dr. K has new patient appointments available only starting in Jan. Would like some advice regarding whether I should wait it out for Dr. K or if Dr. C is just as good. Thank you!

 

[Learner1]

I'm a patient of Dr. K's but have seen labwork from Dr. C and talked to several patients who have seen her. They are both excellent, and though they have different backgrounds, they seem to both be doing a great job helping patients, and are both part of the Center of Excellence and are up to speed on what the researchers are finding. I think you'd be lucky to see either of them, and the sooner you do, the sooner you can get help.

Best wishes...

 

[XenForo]

Does anyone have any feedback on Dr. Chheda vs. Dr. Kaufman? ...

I don't have any experience with Dr. K, but Dr. C has been able to help me orders of magnitude more than any other doc I've seen in 30 plus years. She is competent and also she is professional and efficient. This is just my experience of course, and, like i say, i can't compare the two docs. (However, me being me, I wouldn't do that in a public forum.)

 

[humanrising]

I am trying to get in to see Dr K at the center for complex diseases. I was told they would put me on a list but no idea how long that maybe before I could get in. I thought I would let people know that the prices for appointments have gone up. first appt is 800.00 second follow up 800.000 then 30 min are 485.00 over 30 min is 585.00.

I am feeling rather desperate to see him or someone as able, overwhelmed at how I can raise the money to do just that since my only insurance is Medicare and medical. I ve sold most of my belongings so I will try a go fund me page and maybe I could at least get a couple of months in to get a better diagnosis.

I have tired to get my " regular" doctors to think about the fact that I have cord compression, herniated cervical discs from several car wrecks and a bad fall where I landed on my head.

Very interested on how our person here is doing from his surgery and what his recovery is. Really appreciated what he shared and if I am blessed enough to get in to see dr k I will certainly bring up the idea of CCI & Chiari. I do hope he is doing well. I ve also been interested in CCSVI not the treatment so much but at least the testing to see if there is restriction or blockage in the arteries leading to loss of blood flow to the brain. I believe that my whiplash and fall is what brought on my fibro and possibly my ME .

 

[Gingergrrl]

I am trying to get in to see Dr K at the center for complex diseases. I was told they would put me on a list but no idea how long that maybe before I could get in. I thought I would let people know that the prices for appointments have gone up. first appt is 800.00 second follow up 800.000 then 30 min are 485.00 over 30 min is 585.00.

I really hope you will be able to see Dr. K (he is my doctor since mid 2014) and he is amazing. I did not realize the cost had increased so much and when I saw him for an initial consult in 2014 (at OMI) it was $350 for the consult and then $350 for the follow-up appt two weeks later. Is it $800 without the SIBO test? He usually tests patients for SIBO at their initial appt but I didn't do this and did the SIBO test with a local doctor who was covered by my insurance back in 2014 instead. All of my blood work and other tests that he ordered have been covered by insurance for me.

Very interested on how our person here is doing from his surgery and what his recovery is. Really appreciated what he shared and if I am blessed enough to get in to see dr k I will certainly bring up the idea of CCI & Chiari. I do hope he is doing well.

You could tag him or send him a PM and I am pretty certain that he'd be happy to answer your questions. He is a friend of mine since 2014 and also a patient of Dr. K's.

 

[JinZ]

I really hope you will be able to see Dr. K (he is my doctor since mid 2014) and he is amazing. I did not realize the cost had increased so much and when I saw him for an initial consult in 2014 (at OMI) it was $350 for the consult and then $350 for the follow-up appt two weeks later. Is it $800 without the SIBO test? He usually tests patients for SIBO at their initial appt but I didn't do this and did the SIBO test with a local doctor who was covered by my insurance back in 2014 instead. All of my blood work and other tests that he ordered have been covered by insurance for me.



You could tag him or send him a PM and I am pretty certain that he'd be happy to answer your questions. He is a friend of mine since 2014 and also a patient of Dr. K's.

Wish they would take Insurance

 

[StarChild56]

I wish they did, too, @JinZ although if they did, there would be more constraints on what they can do for us. It is a catch 22.

They will provide you with a superbill with all the info you need to submit a claim to your insurance. They are out of network for me, and their hourly rate I am sure is higher than what my insurance would pay - once I met my deductible - but if I did (and I may) meet my out of network deductible I can get a little reimbursement.

 

[humanrising]

yes, pretty sure that its 800.00 for the first and the second without SIBO just the consults.

I am so grateful I have any insurance, feel blessed that if I get hit by a truck I will be taken care of but its true for folks like us if the doctors use insurance they are trapped having to justify every med and procedure .Pretty rare for anyone take my medicare, the only one I think who takes it is Montoya since he is part of Stanford. He also is not taking any new patients and there is wait list of who knows how long to see one of his assistants.

I do wonder if the great doctors we all want to see if they don't keep raising their prices to keep the patient load at bay since there are so few of them. I do feel that they deserve more then the average doctor for the amount of work it is to treat us and to keep up with research. how much more is a bigger question. its just a sad reality that one has to chose food roof or medical care or not be treated at all. which is where I ve been for years.

I am seeing my DO tomorrow and will try to see if I can get the SIBO test done I ve had it on my test wish list but sounds like it might be good to do sooner then latter in case I get to see him.

Is there any other test that you would recommend I get prior to seeing him?

There is a chance that I could get in to see someone at OMI in the spring probably sooner then I would get in to see dr k and they do cost less. 600.00 for first appointment then 585 for 30 min and 585 over 30 min. But this thread has made me really want to see dr k even more especially since I am so concerned about my spinal cord, neck and brain. Not to say that they wouldn't address it at OMI but knowing that the doctor understands it believes in it and is open is different then hoping they will be.

 

[Gingergrrl]

I was told they would put me on a list but no idea how long that maybe before I could get in.

I would get onto the waiting list (and the cancelation list if there is one) and see no harm in doing this. If an appt becomes available, you can always decline at that time if not able to take it.

Is there any other test that you would recommend I get prior to seeing him?

It is so hard to say b/c he will run some standard tests on every single patient and then very specialized tests depending on your history, symptoms, and situation. As an example, if he suspects Lyme disease it will be very different tests than if he suspects autoimmune disease or POTS or MCAS or CCI/Chiari or active viral infection, etc.

There is a chance that I could get in to see someone at OMI in the spring probably sooner then I would get in to see dr k and they do cost less.

I believe the only doctor who is currently at OMI is Dr. Kogelnik but I may be totally wrong on that and they may have hired more doctors?

Not to say that they wouldn't address it at OMI but knowing that the doctor understands it believes in it and is open is different then hoping they will be.

If Dr. K suspects that you have a spinal cord issue or CCI/Chiari, etc, he will order the testing for you. He is like a medical detective and will follow wherever the evidence points.

 

[Insomniac]

I just rang up the centers for Complex Diseases. I phoned in order to ask about prices, so that I could attempt to save up, even if it takes a few years.
I understood from the secretary that they are not taking on any more patients and they have a 4 page waiting list for 2020.

So I can't go.

I would still be happy to hear more long term outcomes, whether good or bad.

 

[Diwi9]

@Insomniac - I'm sorry to hear about the long wait list. It took me time to get in, but now I've been an established patient for two years. I have had a very good experience with CCD. It can be a slow start in trying to find improvement, but that is the cautionary way to approach this illness. The initial approach was to run a ton of bloodwork. After that, we targeted gut issues, MCAS, and POTS. Additional immune interventions started after that. What I like about CCD is that they follow the research and are willing to try medications as determined by test results.

CCD works with my local primary. One hope I've had is that my local primary can gain some ideas about treatment for other ME/CFS patients via my treatment plans. Feel free to PM me if you have specific questions about my treatment and experience.

To be completely honest, I wish CCD had 8-10 doctors, including specialists and additional diagnostic testing...but they are a small operation and really do the best they can, which is great given their size. They are expensive, at least for me as all costs are out-of-pocket...but I have gone from being bedbound to being able to be on my feet and reasonably active for at least half of the day. My crashes are a fraction of the suffering they used to be through treatment. Obviously there are no guarantees as we are all different.

Since you are in Israel, it might be worth your while to communicate with patients on this forum about treatment ideas that you can bring to a local physician who is open-minded and willing to learn/try (although that is the struggle we've all had...finding someone willing to work with us). It is a pity that the CDC hasn't audited our specialist practice groups and published a real treatment guide/check list, because many symptoms are treatable for many patients. Sometimes functional medicine doctors are a bit more open-minded and informed about some of the off-label treatments available, I just don't know what sort of access or availability you have in Israel.

 

[Insomniac]

It's terrible here.

 

[Learner1]

@Insomniac There are few clinicians anywhere who specialize in ME/CFS. I have been a patient of Dr. K for 2 years. He has been helpful and I am much better than I was when I began seeing him, and the treatments he has prescribed - valganciclovir, IV antibiotics, IV immunoglobulins, mast cell meds, steroids, etc. have greatly helped.

But, I also see 2 neurologists, a mitochondrial specialist, a hematologist, an oncologist, a functional medicine MD, and naturopathic doctors who practice functional medicine. It has not been a linear journey and the doctors I see today are not the doctors I started with anf if I hadn't also neen seeing some of them and getting their tests and treatments, I would not be where I am today.

I've educated myself, reading hundreds of medical journal articles, going to classes and conferences, and writing to people on the internet to get questions answered. Even still, some doctors feel threatened by patients eho can read...

But, I've found there aresmary, curious, open-minded doctors who will take me seriously, answered my questions, read thtoigh the papers I've brought, and gone out of tveir comfort zone on a leap of faith to run tests I've requested (or order tests on functuons I've asked how one tests) and then experimented with treatments they or i have read about, orctaken an idea I've brought them ftim another doctor but had some new insight that improved my treatment regimen.

None of my doctors, including Dr. Kaufman, know everything about ME/CFS or about what tests and treatments I need. But, doctors who are detectives, who care about me and are challenged by complex patients, they are the ones to seek out for help. Ive found their specialty or the letters after their names aren't so important, its there curiosity, tenacity, and willingness to listen to new ideas that mskes a difference for patoents like us.

 

[perrier]

@Insomniac There are few clinicians anywhere who specialize in ME/CFS. I have been a patient of Dr. K for 2 years. He has been helpful and I am much better than I was when I began seeing him, and the treatments he has prescribed - valganciclovir, IV antibiotics, IV immunoglobulins, mast cell meds, steroids, etc. have greatly helped.

But, I also see 2 neurologists, a mitochondrial specialist, a hematologist, an oncologist, a functional medicine MD, and naturopathic doctors who practice functional medicine. It has not been a linear journey and the doctors I see today are not the doctors I started with anf if I hadn't also neen seeing some of them and getting their tests and treatments, I would not be where I am today.

I've educated myself, reading hundreds of medical journal articles, going to classes and conferences, and writing to people on the internet to get questions answered. Even still, some doctors feel threatened by patients eho can read...

But, I've found there aresmary, curious, open-minded doctors who will take me seriously, answered my questions, read thtoigh the papers I've brought, and gone out of tveir comfort zone on a leap of faith to run tests I've requested (or order tests on functuons I've asked how one tests) and then experimented with treatments they or i have read about, orctaken an idea I've brought them ftim another doctor but had some new insight that improved my treatment regimen.

None of my doctors, including Dr. Kaufman, know everything about ME/CFS or about what tests and treatments I need. But, doctors who are detectives, who care about me and are challenged by complex patients, they are the ones to seek out for help. Ive found their specialty or the letters after their names aren't so important, its there curiosity, tenacity, and willingness to listen to new ideas that mskes a difference for patoents like us.

Dear Learner

You are a real warrior, bravo.

Your post highlights some issues however. One would need a bit of mobility or functionality to do all you did. What if the person is flatlined?

How can such a weak person go from doctor to doctor?

And the point you make about Dr K not knowing everything, raises the issue that with this illness there should be a small team assessing the patient, because the illness is too severe and too extreme for one specialist to handle,

But this fact, the last one—that his illness is very extreme—is often totally not seen even by many CFS researchers, Dr Davis, and Hanson, and Klimas is excluded.

 

[Sing]

Yes, @perrier, I second your feeling that Learner is a real warrior!

Yes also to your other comments. I didn’t have the resources, tenacity or faith that I would get helpful help, to go around to many doctors. The ones I did go to didn’t know much, if anything, about ME/CFS and often weren’t very helpful either, l in treating my symptoms—that is, until I educated myself about what symptomatic treatments others here did find helpful. We have been my best resource by far.

I got pretty gun shy about the « alternative » practitioners as none of them admitted that they didn’t understand ME/CFS or know how to treat it. They all plunged ahead with their treatment ideas, some of which I did try and none of which actually helped me. (I know this is not true for all of us. Some do get « helpful help » from these perspectives, and I can well appreciate how every little bit of improvement means a lot! For my later middle age years, I succeeded this way too—but in my case, from conventional doctors and specialists—at least to a degree; however, now that I am headed towards 70, I find I am definitely going downhill again.

Dr. K, however, whom I have been lucky enough to get to see since winter, has helped rally my systems and slow down the descent a bit. Now I am hoping for IGG and the « bigger guns », if and when I can get them. And like others here, I am hopeful that our good researchers will point us in more helpful directions too, as many are finally working both together and from a basis of better understanding. This is very, very hopeful and encouraging. If help comes « too late for me », however, I will celebrate just as much for others because I have come to identify with our common struggles and need.

 

[Learner1]

Your post highlights some issues however. One would need a bit of mobility or functionality to do all you did. What if the person is flatlined?

How can such a weak person go from doctor to doctor?

It is truly a challenge, being sick enough to need a doctor, but too sick to go. Thinking "outside the box" is your best friend in helping the patient. Some "out of the box strategies I have been successful with:

1. Targeting one or more doctors with skills/experience and knowledge you need. If you need no referral, great! If they resist (or you think the doctor's office would be a major barrier) then, since you don't have much to lose, email them a letter, giving highlights of the patients health history, ICD10 codes, goals for treatment. Along with what didn't work and why this doctor can help you. If they dont respond, they don't have time or want to help you, so keep moving on.
2. Being organized, with labs, day to day treatment logs, clinical, notes from doctor and hospital records. In either a hardcopy notebook or as PDFs in searchable format on a cloud drive.
3. Research on several pertitent topics which cover the etiology of the underlying problems correlating with your symptoms.
4. There is no substitute for seeing doctors in person who can physically touch and examine you. However, I have successful relationships with doctors I mostly do telemedicine with - they email lab orders I advance, I do the labs, and sent my recent labs from other docs, then we have a 30-45 minute zoom conversation. There are also house calls, if I am too sick to go for treatment, they will treat me. There are even concierge doctors one can hire for a monthly fee for complex chronic cases that can see the patient right at home.
5. Making sure of your travel plans to each appointment and make things go as smoothly as possible. Are there charity organizations you can borrow a wheelchair from, will help transport to and from an appointment or fly distances by have my donatexlmane time from NetJets.
6. Taking extra liposomal glutathione, intramusclar B vitamin injectibles, BCAAs and extra hydrocortisone.
7. Planning ahead to be able to lay down as needed and have nutrient dense food available at all times.
8. Be the go between between docs. Collect all your records promptly, then send them to your other docs in appropriate timeframe. Many times, the next doctor see those results and have an "aha" moment that moves my treatment forward.

And the point you make about Dr K not knowing everything, raises the issue that with this illness there should be a small team assessing the patient, because the illness is too severe and too extreme for one specialist to handle,

I very much agree. The issue I have with some of my best doctors are they well-known, sought-after. And busy. And, even if they are brilliant, no one can know everything. We patient have more free time ti read the research, compare to out lab results and bring any insights gleaned to the doctor, going "You're the doctor. What do you think of this coincidence?

Best, once you're in there system, is to book appointment every 2-8 weeks into the furniture. This works best if you stagger on different weeks, so you're seeing some doctor once a week in case anything goes wrong.so, it pays to build a safety net of brilliant, inquisitive docs all looking for new ideas or, at least, if they can admit they dont know and are interested in learning about you as a

But this fact, the last one—that his illness is very extreme—is often totally not seen even by many CFS researchers, Dr Davis, and Hanson, and Klimas is excluded.

We definitely need 100x as many ME/CFS docs in the US and 1,000 times as many worldwide. Waiting is not an option. Working with those that exist now is the only way to go.

Yes, @perrier, I second your feeling that Learner is a real warrior!

Just trying to survive here...

Yes also to your other comments. I didn’t have the resources, tenacity or faith that I would get helpful help, to go around to many doctors. The ones I did go to didn’t know much, if anything, about ME/CFS and often weren’t very helpful either, l in treating my symptoms—that is, until I educated myself about what symptomatic treatments others here did find helpful. We have been my best resource by far.

Self-education and researching different treatment modalities across the internet can be extremely helpful. It can be intimidating, but it is quite possible to learn a lot about this, if one makes it a priority and tskes a long term approach. There is no substitute for having a conversation among equals and to be able to look at all your labe and what you're taking and go through the pros and cons of changing your treatment plan and setting goals for rhe future.

I got pretty gun shy about the « alternative » practitioners as none of them admitted that they didn’t understand ME/CFS or know how to treat it. They all plunged ahead with their treatment ideas, some of which I did try and none of which actually helped me. (I know this is not true for all of us. Some do get « helpful help » from these perspectives, and I can well appreciate how every little bit of improvement means a lot!

Half my treatment is conventional medicine and half is "alternative." I would not be where I am today if I had only done one and not the other. I have run into a wall with both, but have benefited from the science-based knowledge of both areas of medicime.
Its prudent to understand what tests are available to figure things out what metabolic processes have gone awry, and what the choices of treatments, whether pharmaceutical, hormonal, nutrient, or device-based.

For my later middle age years, I succeeded this way too—but in my case, from conventional doctors and specialists—at least to a degree; however, now that I am headed towards 70, I find I am definitely going downhill again.

You look much younger Have you looked into your antioxidant levels, 8-OHdG, lipid peroxidation, mitochondrial function, and telomere length?

Dr. K, however, whom I have been lucky enough to get to see since winter, has helped rally my systems and slow down the descent a bit. Now I am hoping for IGG and the « bigger guns », if and when I can get them.

Hope it works out!

And like others here, I am hopeful that our good researchers will point us in more helpful directions too, as many are finally working both together and from a basis of better understanding. This is very, very hopeful and encouraging. If help comes « too late for me », however, I will celebrate just as much for others because I have come to identify with our common struggles and need.

Thank you![/Quote][/QUOTE]

 

[Sing]

Learner wrote, « Have you looked into your antioxidant levels, 8-OHdG, lipid peroxidation, mitochondrial function, and telomere length? » Thank you so much for these specific suggestions. Believe me, with my scientific gaps and memory issues, I’d never have thought of them! But I think some of the tests Dr. K may have done on me may pertain to some of these. I will ascertain. (See, I still have some $5 words. I also appreciated your compliment. If we both go to this year’s Open Medicine Symposium, we will see each other there.

Thanks from us all, I am sure, for your terrific and detailed responses!

 

[Sing]

@Learner1 Would you tell me what are the specific tests and findings Dr. K uses to diagnose MCAS? I think I understand about the general symptom picture with it and interestingly don’t actually have that. I do have a high Chromogranin A level but an entirely normal Tryptase. What other labs does he generally use to indicate it.? If it is not to long to write/explain..... Thank you!

 

[wigglethemouse]

@Learner1 Would you tell me what are the specific tests and findings Dr. K uses to diagnose MCAS? I think I understand about the general symptom picture with it and interestingly don’t actually have that. I do have a high Chromogranin A level but an entirely normal Tryptase. What other labs does he generally use to indicate it.? If it is not to long to write/explain..... Thank you!

Here is a post on MCAS tests for US folks
https://forums.phoenixrising.me/thr...hink-mcas-eds-3-gerd-sibo.62187/#post-1011907

 

[Learner1]

Great list @wigglethemouse.

@Sing My tryptase and histamine have been entirely normal. Theoharides does not recommend tryptase.

He did Chromagranin A and the Interscience PGD2 plasma through Quest, which must be kept COLD to be accurate. Both were quite high even when I had few symptoms. I'm sure he would have ordered some of the others if nothing showed up. He slso tested me for the KIT mutation, which my insurance initially balked at but changed their mund once they realized I had a mast cell problem and KIT positive would change treatment. Being on meds for it has helped.