super depressed about MD's and Montoya news

humanrising

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I am feeling so bloody hopeless about not having a doctor to go to. I am not to far from the bay area so really blessed to be near great doc's but there is no way to see any of them since they are not taking new patients and can't say if or when that will happen.
I had an appointment for Dr Jose Montoya at Stanford for next year but I got a letter saying that he is no longer seeing patients. I wasn't super excited about seeing him since I prefer not pursuing the virus track. But I thought at least its seeing someone who is kind and knowledgeable and my insurance would cover it and who knew maybe in another year he may be more open to look at other triggers and treatments. so one of the few who was treating is no longer with us. he might be doing just research not sure.
I continue to get worse and am so close to being homeless. I understand how and why there are so few doctors but its heart breaking no matter why it is. I hate feeling so powerless to improve my situation. I also hate that so many of us are in the same boat.
 
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I know this is not available right now, but at the Stanford Symposium Ron Davis was very excited by the commitment from the Dean of Stanford University and the Dean of Medicine to totally revamp and improve the Stanford CFS clinic. This is worth a watch @humanrising .
Code:
https://www.facebook.com/OpenMedicineFoundation/videos/487148525184381/?t=3063
 

taniaaust1

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sending you a ***hug*** if it helps. I fully agree that the doctor situation for us really sucks. I had exactly the same issue when trying to find doctors and even the waiting lists were full with doctors not taking on new people. I've just the past couple of weeks found a GP again.
 

Shoshana

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@humanrising
I am sorry, that is truly and so understandably upsetting for you,
and it was nice that you expressed the concern for others of us, as well, at the same time as your own disappointment and difficult worries.

I wonder if you could be put right onto a wait list for next available.
I am sad for you and your situation.
And Yes, it is difficult and sad and worrisome, for so many of us.
 
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Hi, @humanrising,

I want to echo @Centime Tara's recommendation. I think there are several folks on this site who go to the Center for Complex Diseases in Mountain View, CA, and they seem very happy with their care. However, I'm not sure if they accept insurance, like Stanford does.

I will let you know that I am a patient at the Stanford CFS Clinic, and I want to assure you that you are not missing much.

My sister and I were SHOCKED and DISAPPOINTED by the clinic's cookie cutter approach to ME/CFS. We were expecting much more from Stanford.

The Stanford CFS Clinic is currently focused solely on the treatment of Herpes Viruses and anti-inflammatories. That's it.

At my last visit they really pushed me to consider Abilify, because they said other patients experienced "amazing," results. I declined because I already take several medications that work on my Central Nervous System and didn't want to add one more.

I am quite pooped tonight, but if you would like, I can scan and send you the "handout" I receive at every appt at the Stanford CFS Clinic.

The document is, literally, a menu of antivirals, anti-inflammatories, and supplements. I'll try to be online over the weekend if you'd like me to send this document your way. Maybe you could try some of the supplements on your own?

It sounds like you live near the SF Bay Area, as do I. I can totally relate to your fear of becoming homeless. If I hadn't successfully fought my landlords against a 60% rent increase this Spring, I would be living in one of the many tent encampments throughout the Bay Area. I really feel for you.

It's so scary and stressful to have a chronic disease for which there is no reliable prognosis and no definitive treatment plan.

Z
 
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What about the Center for Complex Diseases near Palo Alto? They’re getting excellent reviews.
thank yo all for your kind words, deeply appreciate not feeling so alone in this.

I am on Center for complex diseases list but I recently called the two places here in the bay area that I would love to go to but both told me the same thing. " you are on the list but it really doesn't mean much" . The truth is we have pages of names and more calling and no new doc's.

Since there is no cure we may improve to varying degrees but we are never really "done" and can we ever really give up the ONE doctor who we trust? hence, few spots for the abundance of new patients who are often anything but new to this.
 
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Hi, @humanrising,

I will let you know that I am a patient at the Stanford CFS Clinic, and I want to assure you that you are not missing much.

thank you for your generous offer Zebra :) but for the same reasons you expressed I will not bother you for it.

I was really impressed with the questionnaire that stanford sent but when I spoke to them on the phone about fees etc. and the intake person went on and on about the cost of the antivirals that I knew that this was probably not going to be a good fit for me. It seemed pretty clear that they had a "treatment protocol" that we were to fit into instead of the other way around.

I think Dr Montyona is a kind advocate for us out in the world but I want a doctor to see me and not a diagnosis. or to fit into research they are conducting.

think its safe to say we all want that :)

I am so grateful for all the experience and knowledge I can glean from here. When they told me that he was gone and I could get an appointment next month with the doctor who is taking over his practice my heart skipped with joy for a minute or two but I hadn't heard of him and again not thrilled with stanfords treatment paradigm so I booked the appointment knowing I would probably be canceling it.

I looked him up here and found out that what I feared.... not a doctor I want to see but so happy I didn't have to put my body, spirit and money into another disappointing and taxing appointment. They were a bit shocked when I canceled and asked why I was. I told them not a good fit for me but it was interesting how they reacted to me not wanting to see him.
its pretty disappointing that Stanford sounds like it isn't much better then other vitamin pushing CFS clinics.

I wish I was shocked by a 60 percent rent increase. I am so glad you were able to hang on to your place. Its hard to appreciate how stupid and complicated finding low income housing is until you are in it. I have always tried not to ignore all homeless. I use to go to Glide Memorial who does so much for the homeless but in the last 5 years I also see how easy and how close that reality can be especially in a country where people go bankrupt from medical bills.
 
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thank yo all for your kind words, deeply appreciate not feeling so alone in this.

I am on Center for complex diseases list but I recently called the two places here in the bay area that I would love to go to but both told me the same thing. " you are on the list but it really doesn't mean much" . The truth is we have pages of names and more calling and no new doc's.

Since there is no cure we may improve to varying degrees but we are never really "done" and can we ever really give up the ONE doctor who we trust? hence, few spots for the abundance of new patients who are often anything but new to this.
I’m sorry to hear that here’s a waiting list but not surprised. I’m repeatedly astounded by how poor medical care is in this country for CFS. Why aren’t more young doctors specializing in it, since the need is so huge? It’s very frustrating.

I wish you the best of luck finding help. I’m at Mayo Clinic right now and am about to go through their CFS program. I’ll post about it when I’m done.
 

Timaca

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I wish you the best of luck finding help. I’m at Mayo Clinic right now and am about to go through their CFS program. I’ll post about it when I’m done.
I had no idea Mayo Clinic even HAD a CFS program. When I got sick in 2003, I went to Mayo Clinic Scottsdale. I saw an internal medicine doctor, a rheumatologist, and a neurologist. They could not find anything wrong with me and one of the doctors patted me on the shoulder and told me to go back to hiking the Grand Canyon. At that time I couldn't walk up my driveway. It was nice to know I didn't have OTHER things wrong with me, but they were clueless about CFS back then......

Do post your experience. I would hope it's vastly improved since 2003!!

Best,
 
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I’ll post a full report when I get home. So far I’ve seen a pulmonologist a nutrition/supplements person, and a neurologist, and have had a lot of tests: blood (many), a CT scan of my lungs, an MRI of my brain, and several autonomic tests, which showed significant dysfunction. All of the info will be given to the doctors in the ME/CFS/Fibromyalgia Clinic. Yes, they lump ME in with Fibroyalgia, but I’ve been assured that they handle the illnesses separately. We shall see. I’m very curious to know if they’re still pushing graduated exercise therapy, and am going armed with about 5 major studies that contradict that recommendation. Stay tuned.
 

dancer

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Not to get off topic (about the lack of doctors) but I quick checked the Mayo Clinic website, because last I checked they were horribly backwards in their understanding of this disease. Here's what their website still says: "
Treatment
There is no cure for chronic fatigue syndrome. Treatment focuses on symptom relief.
Medications
Many people who have chronic fatigue syndrome are also depressed. Treating your depression can make it easier for you to cope with the problems associated with chronic fatigue syndrome. Low doses of some antidepressants also can help improve sleep and relieve pain.
Therapy
The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.
  • Cognitive training. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.
  • Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen."

Sigh. @Centime Tara, I hope you are able to educate them by your presence! :)
 
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Yeah, I saw that too and brought it up with the doctor. He said that exercise—what you can manage to do—is helpful, but denied that they’re selling the idea that you have to keep pushing beyond your limits. I’ll find out. You can count on me making some trouble if they really are stuck in the dark ages! I have about five pounds of studies with me.
 
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I was at the Mayo last year. It was an awful experience. They were still pushing CBT/GET and had no interest in the many studies I brought. I am just beginning to get over this experience. They did the tilt table test with me-my BP went down to 49/20- and they told me that shouldn't interfere with my ability to exercise. Said that was due to deconditioning. They said all the pain was just due to stress. I just found a new doc who actually looked at the testing the Mayo did and explained it to me. I had no idea how much info the Mayo had withheld from me until he explained it.
 
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@wabi-sabi I’m so sorry to hear of your experience. Which Mayo did you go to, and who was the doctor you saw? My doc knows all about CFS, and made me feel confident that the CFS Clinic is more up to date now. I’ll find out in the next few days.
 
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I went to the Mayo in Rochester. Saw loads of docs, but don't remember their names. Just take care of yourself while you're there. They sent me to the fibro clinic too. I don't have confidence they are able to differentiate between ME/CFS and fibro.