New clinician at Center for Complex Diseases

[Jyoti]

I was just in contact with the CCD and they have brought on board a new clinician--Jennifer Curtin, MD--from Southern CA. I believe she worked with Kent Holtorf, and came to medicine because of her own complex disease and the reception she got from most of her doctors. I don't know much more about her than this, however, she was presumably hired by Kaufman, and she is taking new patients in relatively short order.

 

[humanrising]

I also heard about her coming on that she is newly out of med school. I would love to be a patient at CCD but am a little weary of seeing someone new and someone from Holtorf since my experience with them wasn't great.
if it was covered by insurance I would give her a try since CCD had such a wonderful reputation but kind of waiting to see how others feel .. Hoping people who see her might be willing to share there experience!

 

[PatientlyWaiting]

Dr. Kaufman seems to be very backed up, I called today and he has 142 people on the waitlist and is only opening a few spaces per month for new patients. Can anyone please provide info about their experience with Dr. Curtin, either here or via DM ? She is less experienced but if she is a good surrogate for the others at the Center for Complex Diseases I might consider it. I just haven't heard or read anything about her other than her bio on the website.

Thanks in advance!

 

[Jyoti]

I'm seeing her and would be happy to discuss my experience. Trying to DM you, but the option does not pop up so why don't you DM me?

 

[Sushi]

I'm seeing her and would be happy to discuss my experience. Trying to DM you, but the option does not pop up so why don't you DM me?

Very new members don’t yet have private messaging privileges as the forum is vigilant about possible spammers. So you will either have to wait a bit to private message or ask a moderator to open a private message with @PatientlyWaiting.

 

[Rufous McKinney]

Dr. Kaufman seems to be very backed up, I called today and he has 142 people on the waitlist and is only opening a few spaces per month for new patients.

What types of treatments do they offer for pwME? Is it some kind of secret?

We have an illness for which there is no treatment, yet they are "treating it".

And all the insurance in the world, does not make this available apparently. Not very patient, here.

 

[Jyoti]

What types of treatments do they offer for pwME? Is it some kind of secret?

I can't speak for anyone but myself....however, I have --to date--been believed (which is surprisingly healing), had appropriate tests ordered that my GP scoffed at, and was referred on to a couple of specialists for more info and possible symptom treatment. Some people have improved, I believe, getting anti-virals from this office after fairly extensive testing for viral infection. . I myself have gotten CCI-specific PT that has contributed to a slight but noticeable diminution of symptoms. There may be more in terms of diagnostics and treatment to come. Equally as likely, there will be another dead end.

So while I understand your skepticism and to a large degree share it, @Rufous McKinney, it was/is an avenue I felt I had to explore (after six years of allopathic dismissals and endlessly expensive and ultimately fruitless alternative treatment).

 

[Rufous McKinney]

So while I understand your skepticism and to a large degree share it, @Rufous McKinney, it was/is an avenue I felt I had to explore (after six years of allopathic dismissals and endlessly expensive and ultimately fruitless alternative treatment).

Congrats you have the chance to go and figure out something more to help you.

I don't wish to dwell in skeptism.....

Fortunately I received the SEID diagnosis, without testing, from my Primary Doctor who is quite good but has no interest in the Medical System, Insurance, or the time needed to convince the Deniers to provide tests and treatments. They do no cover any SEID-related prescriptions so far. NADA. And I have "the best insurance" so they say.

I seem to be skeptical of antivirals for me, as I'm going on 56 years AT LEAST of this. The thought of what that would do to the liver.....

Altho I continue to not understand why doctors can't prescribe anti-virals. Yet "certain doctors" are.

Going to take my chinese herbs now. They work. To reduce symptoms.

 

[Sushi]

They do no cover any SEID-related prescriptions so far. NADA. And I have "the best insurance" so they say.

I have Medicare and they have covered all my prescriptions so far even though most of them are “off label.”

 

[Rufous McKinney]

I have Medicare and they have covered all my prescriptions so far even though most of them are “off label.”

I do as well/ but I have a medicare advantage plan...and thats who takes over and so: they deny. They cite Medicare Documents for the denial. But the documents can;t be viewed by a non-subscribing patient, so who knows if that is even true.

I've NOT chosen to directly battle with them yet about it (file a formal complaint). I've indirectly complained.

Once, it was suggested by the insurance employee on the phone that i have my doctor prescribe a MORPHINE drug, because IT had nalthrexone in it. They wont' cover the LDN. (compounded, won't cover).

Do I pay the salary of this person?

Also refused Modafinil (off label). Denied- we went up the whole chain on that one and my doctor even lied on my behalf. Nope.

I can hardly wait to ask for an MRI.

 

[Jyoti]

Just so glad that Chinese herbs are helpful for you @Rufous McKinney. I know their reach has limits, but I have also gathered that Chinese medicine works well for you as a whole being. Determining what syncs with our own bodies in terms of disciplines and directions is part of the path we are set with this illness, I think. I've always wanted Chinese medicine to work for me because I admire its elegance. But it doesn't. I return to it every seven or eight years thinking--well, maybe this time it will help. And I always end up sicker. So I have had to look elsewhere.

And...I wanted an MRI of my cervical spine which is more and more clearly the locus of many of my symptoms. But my GP basically laughed at me when after presenting him with a small sheath of carefully charted information I asked for an Rx for an MRI of my cervical spine. "No, I'll never order that. I wouldn't know how to read it, I don't understand the issue and I simply won't entertain the idea." And this is someone who has been more helpful to me than the preceding 8 doctors I saw.

When I went to CCD, there was no question about ordering the MRI. 'Of course your situation more than warrants it.' For me that was worth a great deal.

Anyway, I hope you have better luck with your MRI request than I did.

 

[Sushi]

They wont' cover the LDN. (compounded, won't cover).

I get LDN as 50 mg generic tablets and Medicare covers them. Then I dissolve one tablet in 50 mls of distilled water and measure my dose with an oral syringe. Then I keep the liquid LDN in the fridge. A lot of patients do this.

 

[PatientlyWaiting]

What types of treatments do they offer for pwME? Is it some kind of secret?

We have an illness for which there is no treatment, yet they are "treating it".

And all the insurance in the world, does not make this available apparently. Not very patient, here.

Rufous, I totally get you ... And agree with your sentiments. BTW, the Center for Complex Diseases in Mountain View doesn't accept insurance, and my insurance doesn't provide for anything out of network. So I imagine I will be paying out of pocket for the visits (which cost a thousand each, with 2 minimum) and maybe also some of the tests they order if they're not considered conventional. And even then I question the point ... But feel I have to do something and just want answers from somebody. It's infuriating to say the least, to live like this without even the dignity of an answer.

I also have the same skepticism about "treating" an incurable disease. However, I've never received an official CFS/ME diagnosis. But it's my understanding that, although the criteria has become somewhat more refined over the years with the PEM, the diagnosis for CFS/ME is still one of exclusion, after they haven't been able to pin any thing else on you, because many of the symptoms overlap with many other diseases. This disease is complex to say the least. We might in the end have different diseases that overlap in certain aspects, or it might be a spectrum, because some of us seem to be doing better than others, some go into remission, etc. Different bodies respond differently to different therapies, as you said , some Chinese herbs seem to be working for you, at least. I haven't had much luck with that either. But I'm glad you got some relief. I hope for a day when we understand more about these illnesses where insurances will treat them. It's one thing to have to cope with this and quite another to have to also deal with an establishment medicine that often doesn't even recognize it let alone understand it!

Take care & be well

PW

 

[PatientlyWaiting]

I'm seeing her and would be happy to discuss my experience. Trying to DM you, but the option does not pop up so why don't you DM me?

Jyoti, thank you so much for reaching out - I will contact a moderator to help facilitate a DM conversation between us, since I am new.