Mayo Clinic - need UR stories!

[Boule de feu]

I hope you dont mind a suggestion. I suggest you to find a good ME/CFS specialist even if you have to be on a waiting list for a while. The Mayo just dont really know much about ME/CFS and helping it.. they seem to be behind the times. Its more then likely it will be a waste of effort and money.

Take yourself to someone who has a good patient reputation in dealing with ME/CFS.

I think one positive post in this thread is the ONLY one Ive ever heard from a ME/CFS patient about Mayo.

I had to wait 3 years to get in with the ME/CFS specialist I see now.. and Im finding it amazing. I think he's really going to help me.... FINALLY im getting good treatment trials for my symptoms (first time in 14 years Ive found a doctor I can stay with which will).

I'm prepared to wait. 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?

 

[Boule de feu]

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.

How do you get a doctor to prescribe antivirals if he believes that antivirals don't exist???

 

[CBS]

I'm prepared to wait. 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?

I can give you a sense of what you might expect, were you to see Dr. Montoya. For the first year I visited once every three months. For the next eighteen months I visited Dr. Montoya once every six months (actually it was closer to 7 months). It is likely that soon my visits will be once a year. I have my blood tested at home and reviewed by my local primary care provider every month as long as I am on Valcyte. Dr. Montoya is available to my PCP but most communication between them is written. This has been my experience. I have a certain constellation of issues we are dealing with. Other patients may have different experiences.

How do you get a doctor to prescribe antivirals if he believes that antivirals don't exist???

I don't know how you get him to prescribe antivirals but as for their existence, I could send you a picture of them sitting my counter. If after that, he still doesn't believe they exist I would recommend a new doctor.

 

[Boule de feu]

I can give you a sense of what you might expect, were you to see Dr. Montoya. For the first year I visited once every three months. For the next eighteen months I visited Dr. Montoya once every six months (actually it was closer to 7 months). It is likely that soon my visits will be once a year. I have my blood tested at home and reviewed by my local primary care provider every month as long as I am on Valcyte. Dr. Montoya is available to my PCP but most communication between them is written. This has been my experience. I have a certain constellation of issues we are dealing with. Other patients may have different experiences.



I don't know how you get him to prescribe antivirals but as for their existence, I could send you a picture of them sitting my counter. If after that, he still doesn't believe they exist I would recommend a new doctor.

I'm not sure what he meant by that. I know he knows that they exist because we talked about them before. Did he think I was stupid enough to believe what he was saying and thought he would get away with it or he simply meant that there are no antivirals for CFS? While he was telling me that, I remember thinking that I was not going to insist since he did not want to go there.

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.

 

[Boule de feu]

This is now my dilemma:
What if going to Mayo would mean finding out I have something totally different and the ME label is wrong?

 

[maryb]

Just my tuppence worth, after reading all the replies I reckon the Mayo clinic would get the biggest body swerve ever from me. Do you think your doctor is just wanting to send you to the Mayp because he doesn't want to treat you properly in that he doesn't believe you are really ill? I think they are will be more than ready to prescribe CBT and GET for ME, as to another diagnosis?? I would get on the waiting list for a good doc as soon as you can.

 

[jstefl]

Mayo will rule out everything else to diagnose you. That means many tests by many different doctors and several, if not many trips, and much money. Your profile says that you have been ill a very long time. Most other things would have become apparent by now.

I know that Valcyte worked for many reasons. When I started Valcyte, I was using Midodrine to maintain my blood pressure, While on Valcyte, I was able to stop the Midodrine, and my BP has remained normal since. I was having the most terrible headaches before Valcyte, and after a few months on Valcyte, the headaches became much more tolerable. My brain fog greatly decreased during my time on Valcyte. My energy level increased some, and I noticed several other changes for the better.

Valcyte is very expensive and is clearly not for everyone. There are other areas of this site to learn more about Valcyte, so I don't want to direct the discussion in that direction.

John

 

[SOC]

I'm prepared to wait. 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?

You don't have to wait 3 years to see Dr Rey at Dr Klimas' private clinic. You also don't have to wait long to get an appt with Dr Lerner, who might be an option if you think you have infectious diseases.

You need to see Dr Lerner every 6 weeks (or less) if you're taking antivirals. I think you only need to see Drs Rey/Klimas a couple of times a year, but that might depend on the treatment you're getting.

It would be worth calling a few of the docs you're most interested in seeing and finding out about costs, waiting times, number of visits, etc. Most of them have long-distance patients and understand the travel concerns.

 

[floydguy]

I'd also add to prepare to battle your insurance company. After 3 months of Valtrex my insurance company said that's enough. I get the sense they would just laugh at me if I tried Valcyte.

 

[minerva]

I went to the Mayo Clinic after being diagnosed with Trigeminal Neuralgia by one of the country's leading experts on the disease -- actually, after scheduling a surgery with him and freaking out about having brain surgery before getting a second opinion from some place big like the Mayo Clinic (and preferring to have surgery there). When I went there, I saw a very arrogant surgeon who took a 180 after hearing about my CFS diagnosis, did not do even a basic neurological exam, did not seem to examine my records or MRI's, and referred me to psych. I was in tears and felt very vulnerable. They talked me into an immediate stay in their Depression Center, where I was told I would be able to relax, be visited by the neuro team and pain team and get "integrative care." Nothing like that happened. The nurses made fun of how my POTS made me able to use my computer in bed but made it difficult for me to sit up or walk around. The pain team visited me and told me I was an addict (when trigeminal neuralgia is one of the most painful conditions one can have and standardly treated with opiates) and encouraged me to use my stay to detox, which my treating physicians at home did not support! Beyond that, they discharged me because I could not sit up long enough to participate in group cognitive behavioral sessions.

I was never again seen by the neurosurgeon who had accepted my case and who I had flown there to see. It was horrible care. I would advise anyone with CFS to stay away from there. They seem like they've gone to the UK dark side with treatment. I couldn't be seen for something unrelated. The notes sent to my treating physicians effected my care badly and took a lot of interfacing with my ME/CFS specialist rheumatologist to repair. It was a waste of money and I was traumatized by the experience.

 

[Boule de feu]

I went to the Mayo Clinic after being diagnosed with Trigeminal Neuralgia by one of the country's leading experts on the disease -- actually, after scheduling a surgery with him and freaking out about having brain surgery before getting a second opinion from some place big like the Mayo Clinic (and preferring to have surgery there). When I went there, I saw a very arrogant surgeon who took a 180 after hearing about my CFS diagnosis, did not do even a basic neurological exam, did not seem to examine my records or MRI's, and referred me to psych. I was in tears and felt very vulnerable. They talked me into an immediate stay in their Depression Center, where I was told I would be able to relax, be visited by the neuro team and pain team and get "integrative care." Nothing like that happened. The nurses made fun of how my POTS made me able to use my computer in bed but made it difficult for me to sit up or walk around. The pain team visited me and told me I was an addict (when trigeminal neuralgia is one of the most painful conditions one can have and standardly treated with opiates) and encouraged me to use my stay to detox, which my treating physicians at home did not support! Beyond that, they discharged me because I could not sit up long enough to participate in group cognitive behavioral sessions.

I was never again seen by the neurosurgeon who had accepted my case and who I had flown there to see. It was horrible care. I would advise anyone with CFS to stay away from there. They seem like they've gone to the UK dark side with treatment. I couldn't be seen for something unrelated. The notes sent to my treating physicians effected my care badly and took a lot of interfacing with my ME/CFS specialist rheumatologist to repair. It was a waste of money and I was traumatized by the experience.

Sooooo, so sorry to read this, Minerva.
When we are so sick, we don't need this type of intervention.

I lived a similar experience with an internist who ended up giving me a SFC diagnosis but he prescribed CBT and GET as a treatment. I could not believe he had done that after seeing me for only 10 minutes. I left very upset and I cried for 4 hours afterwards. My ordeal only lasted one day. I can understand how devastating it was for you.

Anyway, my GP was intelligent enough to ask for a second opinion with an infectious disease specialist and a physiatrist who right away made a report that I could not participate in the Hospital exercice program since I was way too sick for that. I insisted to go because I felt it would be the only way I could get better. I participated as a spectator only. Just getting to the gym was enough to make me crash. I was able to attend a few days and ended up living in a very dark room for two years after that, not able to watch TV, listen to the radio or read. My 6 year old wanted me to play with her. She used to spend hours playing with her PET SHOP, and I could not even lift my head to look at what she was doing. It was a horrible time.

Today, I can manage my symptoms a bit better. I'm not very successful at it. The CBT and GET did nothing for me. I will not pay a fortune to do it all over again.

 

[August59]

14 days and $30,000 poorer and did not get anything but a bunch of poor mouthing about what all the others doctors before them had done wrong. They did offer any treament suggestions at all and re-confirmed all previous diagnosis that I had which totaled about 22 - 24 different diagnosis. They love sticking dye into too. They stuck needles between all my toes and injected dye to check my lymphatic system which they said was normal, but man that hurt like hell. The whole body nuclear bone scan was pretty cool, but didn't tell me anything that I already knew. Drew 21 tubes of blood plus bloood gases. Put me in a sauna and the put orange powder all over me to see how quick it turned purple. I told the woman that she didn't have to put me in a sauna, but just put the powder on and wait, I'll turn red, start sweating and have an elevated skin temperature within an hour. She thought I was joking and that it was impossible.

I would not waste my time going to the Mayo Clinic in Rochester, MN. I would go to John Hopkins before the Mayo Clinic

 

[Boule de feu]

14 days and $30,000 poorer and did not get anything but a bunch of poor mouthing about what all the others doctors before them had done wrong. They did offer any treament suggestions at all and re-confirmed all previous diagnosis that I had which totaled about 22 - 24 different diagnosis. They love sticking dye into too. They stuck needles between all my toes and injected dye to check my lymphatic system which they said was normal, but man that hurt like hell. The whole body nuclear bone scan was pretty cool, but didn't tell me anything that I already knew. Drew 21 tubes of blood plus bloood gases. Put me in a sauna and the put orange powder all over me to see how quick it turned purple. I told the woman that she didn't have to put me in a sauna, but just put the powder on and wait, I'll turn red, start sweating and have an elevated skin temperature within an hour. She thought I was joking and that it was impossible.

I would not waste my time going to the Mayo Clinic in Rochester, MN. I would go to John Hopkins before the Mayo Clinic

I am at the end of my rope. During last consult, my GP decided to run all of the tests again and asked me to pay a visit to my ENT and gastro-enterologist. We are "re"-starting from square one... 7 years later. I am waiting for my results and so scared again that we will find nothing. I'm not prepared to hear: 'We know you are very sick but we can't find anything. We can't do anything for you so you have to live with it.' I'm so fed up with all this. I am going to take this 30,000$ and invest it on my children's future. I will pay their University tuitions, instead or get a bathroom on the second floor (it will come a day when I won't be able to climb the stairs anymore and this day is not very far from now).

Thank you so much for sharing your experiences with me. I'm happy I avoided making a HUGE mistake!
Take care. Bdf

 

[SOC]

I am at the end of my rope. During last consult, my GP decided to run all of the tests again and asked me to pay a visit to my ENT and gastro-enterologist. We are "re"-starting from square one... 7 years later. I am waiting for my results and so scared again that we will find nothing. I'm not prepared to hear: 'We know you are very sick but we can't find anything. We can't do anything for you so you have to live with it.' I'm so fed up with all this. I am going to take this 30,000$ and invest it on my children's future. I will pay their University tuitions, instead or get a bathroom on the second floor (it will come a day when I won't be able to climb the stairs anymore and this day is not very far from now).

Thank you so much for sharing your experiences with me. I'm happy I avoided making a HUGE mistake!
Take care. Bdf

If the doc thinks you need another full work-up and is willing to suggest Mayo, could you ask him to refer you to Drs Klimas/Rey or Dr Enlander? They are specialists in ME/CFS and could, 1)make sure the right tests are done, and 2) interpret them correctly. Seems like it would be a waste of time and money to have your GP run all those tests again.

 

[Boule de feu]

[CATEGORY][/CATEGORY]

If the doc thinks you need another full work-up and is willing to suggest Mayo, could you ask him to refer you to Drs Klimas/Rey or Dr Enlander? They are specialists in ME/CFS and could, 1)make sure the right tests are done, and 2) interpret them correctly. Seems like it would be a waste of time and money to have your GP run all those tests again.

I can't even get to my doctor's office without getting very sick. I don't see myself traveling back and forth to U.S.A. I would end up being way worse than I am right now. However, I would love to have some very specific tests done (the ones my doc don't agree too - pffff!).

The Canadian Health Care system is free. I don't pay for anything. It took me 10 minutes, and it was done. Now, I just need to wait for the results to come back. I had my first panic attack, last night. I did not know what it was too be so anxious that you start panicking. I guess it was a wake-up call for me.

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.

 

[Gamboa]

Hi fellow Ottawan,

So sad to hear that you are not doing well.

I have not been improving either and was all set to book an appointment with Dr. Klimas when, out of the blue, Dr Hyde called me. I had originally sent him a request 4 years ago but did not get a response. I then met him and his staff at last years convention in Ottawa and told him that I had not received a reply and he said to re-send everything since they had had a flood in the office and a lot of their papers were ruined. I sent new paperwork and, once again, heard nothing. I know he only takes a small number of patients a year so I thought that I just wasn't selected again. Then, last Thursday, after actually complaining about this on another thread, the phone rang and it was Dr. Hyde's office asking if I would still like to be a patient. I said yes, thinking the appointment would be months away and they said they could see me the following Monday morning at 9am!!! I was there for 4 hours and he booked me a number of tests right away, including a Holter monitor test for the following day and a cardio-pulmonary test for yesterday!! I have X-rays to do, lots of blood work, an Echo in April, an MRI and a follow-up appointment next week for another 3 hours with Dr. Hyde. Needless to say, I can't believe all this is happening and happening so quickly. As you know, usually we have to wait months for everything here. He is thinking of sending me to Mount Sinai in Toronto for a spect scan.

His fee for all this and much more to come is $3000. Most of the tests are covered by OHIP since I am an Ontario resident. A few of the unusual blood tests have a small fee but I don't mind paying it. If he can figure out what's going on with me, it will all be worth it. Actually, it has been worth the money already since it was so very nice to be seen by someone who acknowledges and understands all my health difficulties. His office staff and wife are lovely and the 4 hours I spent there was very pleasant. They even gave me a cup of tea and some delicious cake! I am looking forward to my next visit.

Have you thought of seeing Dr. Hyde? It would be easier and cheaper for you since you live here and wouldn't have to travel far. I plan on starting a thread about my visit sometime soon so you can keep up on what is going on. If you want, feel free to contact me. That goes for anyone, by the way. Just send me a private message and I'll give you my phone number and/or email address.

Gamboa

 

[Boule de feu]

Hi fellow Ottawan,

So sad to hear that you are not doing well.

I have not been improving either and was all set to book an appointment with Dr. Klimas when, out of the blue, Dr Hyde called me. I had originally sent him a request 4 years ago but did not get a response. I then met him and his staff at last years convention in Ottawa and told him that I had not received a reply and he said to re-send everything since they had had a flood in the office and a lot of their papers were ruined. I sent new paperwork and, once again, heard nothing. I know he only takes a small number of patients a year so I thought that I just wasn't selected again. Then, last Thursday, after actually complaining about this on another thread, the phone rang and it was Dr. Hyde's office asking if I would still like to be a patient. I said yes, thinking the appointment would be months away and they said they could see me the following Monday morning at 9am!!! I was there for 4 hours and he booked me a number of tests right away, including a Holter monitor test for the following day and a cardio-pulmonary test for yesterday!! I have X-rays to do, lots of blood work, an Echo in April, an MRI and a follow-up appointment next week for another 3 hours with Dr. Hyde. Needless to say, I can't believe all this is happening and happening so quickly. As you know, usually we have to wait months for everything here. He is thinking of sending me to Mount Sinai in Toronto for a spect scan.

His fee for all this and much more to come is $3000. Most of the tests are covered by OHIP since I am an Ontario resident. A few of the unusual blood tests have a small fee but I don't mind paying it. If he can figure out what's going on with me, it will all be worth it. Actually, it has been worth the money already since it was so very nice to be seen by someone who acknowledges and understands all my health difficulties. His office staff and wife are lovely and the 4 hours I spent there was very pleasant. They even gave me a cup of tea and some delicious cake! I am looking forward to my next visit.

Have you thought of seeing Dr. Hyde? It would be easier and cheaper for you since you live here and wouldn't have to travel far. I plan on starting a thread about my visit sometime soon so you can keep up on what is going on. If you want, feel free to contact me. That goes for anyone, by the way. Just send me a private message and I'll give you my phone number and/or email address.

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.

 

[SOC]

[CATEGORY][/CATEGORY]

I can't even get to my doctor's office without getting very sick. I don't see myself traveling back and forth to U.S.A. I would end up being way worse than I am right now. However, I would love to have some very specific tests done (the ones my doc don't agree too - pffff!).

The Canadian Health Care system is free. I don't pay for anything. It took me 10 minutes, and it was done. Now, I just need to wait for the results to come back. I had my first panic attack, last night. I did not know what it was too be so anxious that you start panicking. I guess it was a wake-up call for me.

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.

The panic attacks sound awful! I hope it's a temporary thing.

Best of luck with the tests. Maybe this time he'll find something he can treat.

 

[dannybex]

It's amazing/confounding to me as to where the Mayo Clinic gets it's reputation.

 

[Boule de feu]

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?