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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Is he accepting new patients?I see Dr. Kaufman @ Center for Complex Diseases in Mountain View, CA. He is an amazing doctor.
Is she accepting new patients?Dr Susan Levine in NYC is very experienced, knowledgeable, and compassionate
Yes, this is a very serious matter. Alas, up until now, this has also been our experience, on every point you make. Yet, the thing that gets me is that you keep hearing of folks who have gotten so well.Went and seen multiple, all fails. There is no best one, they all have their own theories/beliefs and treat you that way.
One might diagnose you with lyme disease and put you on longterm antibiotic treatment, the other one wants you on years long antiviral medication. Etc. They all differ.
There is no cure for ME (yet), it's better to save your money until better diagnostics are available. I made the mistake to fully trust these docs, i have paid with a decline in health.... and a wallet that now feels a lot lighter.
Just my 2 cents.
I have! He's very kind and sympathetic, and he seems to be very knowledgeable.Has anyone seen Dr David Systrom in Boston?
Before I even saw him one of the nurses in his office did a brief exercise test (just five minutes of stepping up and down on and off a stool). Then I was taken to his office where we chatted for a while, and he reviewed my results. He said that I fit a certain pattern that he often sees in his pateints. Then he ordered pretty extensive blood tests which mainly looked at my immune system.
He also scheduled me for a skin biopsy and an invasive cardiopulmonary exercise test, which I had to come back for the following month. This test was scheduled for first thing in the morning, so you'd probably have to come in the day before. This is an exercise test which is done after they insert one catheter into an artery in your neck, and another into the vein in your heart so they can test blood as you exercise. It wasn't terrible, but it wasn't terribly fun either, and it took a few days for me to recover from the test. Also, although the test itself doesn't take too long, between getting blood tests, getting the catheters in, removing the catheters, getting all of the procedures explained to me, all in all I was in the hospital for 4 hours.
Based on the results of the test he put me on Mestinon, and I've scheduled a follow up (non-invasive) exercise test and appointment with him in a few months. I've had to check in with the people in his office a few times as my Mestinon dosage has been adjusted, and they're all lovely and patiently answer all of my questions. I'm not sure what will happen if the Mestinon proves not to help--he did mention that there were some other options.
So that's my experience with him. You'll have to decide if he's the right choice for you, but you can feel free to message me and ask me any more questions you may have. You can also read more about the invasive exercise test in this article, and mestinon in this article.