Mayo Clinic - need UR stories!

[xrayspex]

boule de feu, sorry for your struggles, ironic isn't it, their poor medical care drives one to anxiety and then they can cry crazy

that would be great if someday you saw dr hyde

since it was 18 years ago I didnt say anything, but yes I too had a lame experience at mayo.....did like one xray and rec'd going home and getting graded exercise sort of therapeutic support, back then wasnt any real diagnosis not even fibro, just somatic something or other, was useless

 

[SOC]

If you got a different diagnosis than ME at Mayo, you're not here.
If you are happy with Mayo's work, you're not here.

I think we are a pretty biased crowd. Don't you think?

I wouldn't say that's entirely true. Many of us are happy with our ME/CFS specialists and are still here. If Mayo was doing anything good for PWME, I'd think we'd have somebody here with a positive story. Not a certainty, but a good likelihood, surely. So I wouldn't call us biased in that regard. Biased against their biopsychosocial approach to ME/CFS, maybe, but that's another story.

 

[Boule de feu]

I wouldn't say that's entirely true. Many of us are happy with our ME/CFS specialists and are still here. If Mayo was doing anything good for PWME, I'd think we'd have somebody here with a positive story. Not a certainty, but a good likelihood, surely. So I wouldn't call us biased in that regard. Biased against their biopsychosocial approach to ME/CFS, maybe, but that's another story.

I'm glad we are having this discussion. I will keep my money and make sure I put it somewhere else.

 

[SOC]

I'm glad we are having this discussion. I will keep my money and make sure I put it somewhere else.

Best of luck with your search for good and affordable care! I'm glad your doctor is sticking with you and continuing to look for problems he can treat.

 

[Gamboa]

I have written twice to request an appointment with Dr. Hyde. They even called me back but told me to call someone in another office who would take care of my request. It never happened. I am still waiting. One thing is sure Gamboa, Dr. Hyde will find what you have, ME or not.

I was there at the Ottawa conference, last september. I attended the first day only but left very early. I was able to listen to what he had to say. I did get his textbook. I believe you were there, too. ;-)

I'm so happy that it is happening for you. If you don't mind asking him how he chooses who will be a patient or not. I am very curious to know. Never know, I might end up getting a phone call soon.

I go back to see Dr. Hyde on April 4th. I'll ask him how he selects people and see if he will take you on.

You are so right about him being able to identify all my pathologies, as he refers to them. I can't believe how fast things are moving already.

 

[taniaaust1]

WAKE-UP! They are not going to do anything for me. I will never get better. I will have to learn to live with it... and I DON'T WANT TO.

For the first time in my whole sick life, I am having psychological symptoms. Never had them before. It's very weird to feel this way.

Just cause you arent well enough to get to a decent doctor, it doesnt mean that you can never get better some. There are many things you could try which you dont need a doctor for eg methylation protocol or whatever. After all that is what any doctor would be mostly doing anyway to try to treat you...experimentation with various things.

We are all lucky we live in the age of the internet.

 

[taniaaust1]

I'm not quite clear on what he thinks about CFS. Sometimes, he tells me it's viral. Other times, he is not sure. And what about the referral to Mayo? Does he know that they only offer GET and CBT or does he truly want a second opinion, hoping they will solve my problem? It's a 20,000$ gamble.

One thing Ive found with most doctors, is that they are very happy if they can push their CFS patients elsewhere... most doctors do not really want to be dealing with us.

Let's say I would get an appointment with Dr Klimas, Dr Montoya or Dr Peterson in three years from now, how many times would I have to travel back and forth? Could my GP discuss things with him or her over the phone? Is it possible to avoid traveling altogether?

Many of the well known ME doctors are willing to work with other doctors who are interested in really helping their ME/CFS patients. There is a couple of well known doctors in other parts of the world who are helping a few australian doctors with their treatment of ME/CFS patients so I guess that can possibly happen elsewhere as well.

Maybe try to see if there are any doctors in your local area who would be willing to try to get in touch with one of the very good ME doctors for more advice in your care and work under an experienced ME/CFS specialist.

Ive recently found a very young doctor (she looks like she's just out of uni) and thou she hasnt currently an interest in ME but rather in womens health... Im hoping over time to be able to educate her in it. (I was fortunate as I have now got a CFS specialist also who will help teach her how to treat me).

Maybe look for someone you can educate in helping you help yourself.

 

[ebethc]

If the infectious disease doc that I saw at Mayo had offered me Valcyte, I likely would have come away with a slightly better view of my experience in Rochester. I started on acyclovir in Nov., 2009. I saw some improvement for several months but it was not a cure. I started to backslide after a year. It took another six months to decide if the "backslide" was because I needed more aggressive treatment or if it was due to side effects. In May of 2011, I started on Valcyte under the supervision of Dr. Montoya. The impact was huge (definitely not just a better period). The improvements have been sustained (I was between a 1.5-2 out of ten in May and I'm now a solid 5 with some periods in the 6-6.5 range). Again, not a cure but definitely a big improvement in quality of life. An addition to symptomatic relief, my EEG and Holter monitor results have largely normalized since starting Valcyte (March & April 2011 compared to December, 2011). My neurologist says that to him it is clear that the Valcyte was responsible for the improvement. I suspect that after 18 years, the odds of a cure are small as now there is likely permanent neurological damage (autonomic neuropathy - again according to my neurologist) and yet no one outside of the patient community (and too few within it) is getting upset at the morbidity caused by this disease.

Hi @CBS
I'm considering going to Dr Montoya.. Can you tell me if you're still having success with his protocol? Did you (or do you) have one of the chronic viruses? I was tested for alot of viruses (high titers for EBV; negative for all the others - CMV, HSV-1, HSV-2, HHV-6; Leptin was elevated, 43.3, and NK cells were rock bottom, only 2!). I've had symptoms most of my life and before EBV (2001, and maybe in the late 80's in college) so maybe not due to a virus at all... Is Montoya only interested in treating viruses? I know that he likes antivirals..

thanks