went to Stanford CFS clinic -- a bit confused about treatment plan

[msf]

I just googled this and found that there are some doctors that prescribe clarithromycin for SIBO it seems, but that there are no pubmed results for this. If you just google ´clarithromycin gut´ there are results for H. Pylori infection and one for Crohn´s Disease, where it was supposed to target Mycobacteria.

 

[cb2]

when i had a follow up with norris a few years ago she prescribed biaxin for me but said it was for the Chlamydia pneumoniae.
@IreneF thanks for your input about Bonilla and valcyte. I had mostly worked with Norris.. i would love to hear more about your experience on the positive end with dr. Bonilla if you feel like sharing or any suggestions you feel like making for folks going to visit him for the first time?

thanks

 

[IreneF]

when i had a follow up with norris a few years ago she prescribed biaxin for me but said it was for the Chlamydia pneumoniae.
@IreneF thanks for your input about Bonilla and valcyte. I had mostly worked with Norris.. i would love to hear more about your experience on the positive end with dr. Bonilla if you feel like sharing or any suggestions you feel like making for folks going to visit him for the first time?

thanks

Mostly I had an easier time engaging with him than with Norris. I got reasonable answers to my questions. He's got a pretty thick accent, tho.

 

[cb2]

thank you @IreneF i am glad you have been able to get better with the Valcyte.. I wish it were more affordable. Last time I saw Norris she was gonna have me start on a very tiny dose of Valcyte and work my way up. I think at the time i had to many other things going on and decided not too. I am hopeful with this new dr and the PAs we will all be able to make some better progress. did you start on a large dose of Valcyte? in what ways are you seeing improvement?

 

[IreneF]

thank you @IreneF i am glad you have been able to get better with the Valcyte.. I wish it were more affordable. Last time I saw Norris she was gonna have me start on a very tiny dose of Valcyte and work my way up. I think at the time i had to many other things going on and decided not too. I am hopeful with this new dr and the PAs we will all be able to make some better progress. did you start on a large dose of Valcyte? in what ways are you seeing improvement?

I don't recall how I started. I've just been more able to do things like cook or do laundry. Nothing dramatic.

 

[Suffering Succotash]

I couldn't disagree more. The creation of the CFS clinics at Stanford is one of the most significant milestones in the history of CFS. You can't overstate the imprimatur of legitimacy that Stanford gives. If anyone thinks CFS is a BS disease, you can throw Stanford in their face. If there is another CFS clinic in a major U.S. teaching hospital- like the Mayo, Cleveland, the Brigham- let me know.

Dr. Montoya has conducted research, published, raised money, gotten other docs interested in CFS (like Kogelnik), gotten Stanford docs to collaborate in research, gotten other specialists at Stanford to treat pwc's.

And he believed us.

He is also an employee at Stanford. I have no idea how much support he gets for the clinic, or how many hours he can spend there. I do know that he has had to fight for everything he has gotten at Stanford. He shouldn't have to fight here.

JAH


I understand the limitations and frustrations of Stanford very well, and don't necessarily recommend it myself! I'm nut questioning anyone's negative experiences.

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I do agree that Stanford Medical having a CFS Clinic gives MECFS professional recognition. I agree that the researchers at Stanford Medical (not the CFS patient clinic) are making important discoveries.

However, the running of the Stanford CFS Clinic is far different from Stanford's MECFS research activities, where important strides are being made. I stand by my statement that the Stanford CFS is not at all as it would seem to be, with such great research happening nearby on the same campus.

IMO, the CFS clinic is a sham. Here you have extremely ill patients, and only one experienced physician. Moreover, that single experienced physician sees patients once per year.

This is not Quality of Care. This is not appropriate medically -- it violates the aspect of managed care called continuity of care. It means patients are not being cared for adequately.

The other physician in the clinic is inexperienced, with only few months of study in this illness. Many writers in this forum know far more than this physician about the illness.

You say Dr. Montoya is an employee of Stanford. Yes, he is, but his focus now is research and his sabbaticals, as he himself has directly stated. His focus is not treating patients.

You say you understand the limitations of the Stanford CFS Clinic. I hope those limitations are a bit more apparent now.

 

[Johannes Starke]

I saw Dr Bonilla today. He was attentive and, while he still had a thick accent, I was able to understand him good enough. It's been 18 months since the last post in this thread--I gotta give Dr. Bonilla respect for sticking around and getting experienced in treating ME/CFS.

For situation he recommended an anti-inflammatory approach. I wasn't entirely convinced by his treatment recommendations, but I have to admit it's hard to convince me of trying any unproven treatment these days. I've had ME/CFS for 12 years, and have tried most many treatments by now. Unless there is a new phase III study on a treatment, I am very hesitant to try it.

Fortunately, I have a pretty good life, despite the ME/CFS limitations. I have the time and community support for effective pacing. My Gastroenterologist at Stanford, Dr. Nguyen, does a very good job treating my IBS and GERD. I have a great primary care physician who helps with immediate care needs, and a good psychiatrist who helps me with sleep.

In the absence of Phase III clinical trials for CFS/ME that probably means that I will stick to treating symptoms for now instead of looking for a silver bullet. I think it's OK to accept that there is no cure for ME/CFS at this time, and try to make the best of it until there is--instead of just trying one substance after another based on anecdotal evidence collected by ME/CFS clinicians who--despite their best intentions--can't really tell which treatments are working, and which are not.

 

[el_squared]

I saw Dr Bonilla today. He was attentive and, while he still had a thick accent, I was able to understand him good enough. It's been 18 months since the last post in this thread--I gotta give Dr. Bonilla respect for sticking around and getting experienced in treating ME/CFS.

For situation he recommended an anti-inflammatory approach. I wasn't entirely convinced by his treatment recommendations, but I have to admit it's hard to convince me of trying any unproven treatment these days. I've had ME/CFS for 12 years, and have tried most many treatments by now. Unless there is a new phase III study on a treatment, I am very hesitant to try it.

Fortunately, I have a pretty good life, despite the ME/CFS limitations. I have the time and community support for effective pacing. My Gastroenterologist at Stanford, Dr. Nguyen, does a very good job treating my IBS and GERD. I have a great primary care physician who helps with immediate care needs, and a good psychiatrist who helps me with sleep.

In the absence of Phase III clinical trials for CFS/ME that probably means that I will stick to treating symptoms for now instead of looking for a silver bullet. I think it's OK to accept that there is no cure for ME/CFS at this time, and try to make the best of it until there is--instead of just trying one substance after another based on anecdotal evidence collected by ME/CFS clinicians who--despite their best intentions--can't really tell which treatments are working, and which are not.

I meant to ask you, what treatments has Dr. Nguyen given you?