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Mayo Clinic - need UR stories!

Discussion in 'ME/CFS Doctors' started by Boule de feu, Mar 23, 2012.

  1. Boule de feu

    Boule de feu Senior Member

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    My GP would like to get a second opinion and has suggested to go to Rochester, Minn.
    After reading many stories, I found out it might not be a good idea to travel that far to learn that i'm supposedly depressed (actually, I have severe ME but no depression) or to be offered GET + CBT.
    I can do that here and it won't cost me thousands of dollars.

    However, the stories I have read on the web were all dated.
    I would like new ones if you have the energy to share them with me. ;-)

    What was your experience like at the Mayo clinic (U.S.)?
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    I never went there but have a number of friends who did. I didn't hear of one person who had a helpful experience there. Usually a combo of "you are depressed and need to exercise more." This was Rochester and the Florida branch. As one patient (who was actually and M.D.) said, "leave off the mayo."

    Sushi
     
  3. jstefl

    jstefl Senior Member

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    I have been going to the Mayo Clinic in Rochester for my CFS since 2005. I have made 25 Trips there to date.

    I can tell you that you won't get much help there, but will spend a lot of money.

    I keep going back because I have a doctor that is willing to work with me, but I believe that he is the exception rather than the rule. Mayo is very good at many things, but CFS is clearly not an area of their expertise.

    I strongly suggest that you not waste your money there.

    John
     
  4. floydguy

    floydguy Senior Member

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    I don't have personal experience either but I've not seen one positive comment on the Mayo. It looks like their ME Division is a joint collaboration between Kings College London and the CDC. I would review the other thread on which ME specialist to see (ie Klimas, Enlander, Peterson, etc.).
     
    taniaaust1 likes this.
  5. Boule de feu

    Boule de feu Senior Member

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    An alternative ? Any suggestion?
     
  6. CBS

    CBS Senior Member

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    Went there in 2007. No help at all for CFS but they did manage to overlook several items that within two years nearly killed me. I found out two years later (when trying to figure what the hell had happened) that the endocrinologist I saw at the Mayo failed to tell me that his own radiology department had identified an abnormality on the MRIs that I had brought to the visit for their review. Thanks a lot Dr Young. The gastroenterologist I saw was much better at his job. I want to think that the great Dr. Young was just having a bad day but from other reports I've heard, that doesn't seem to be the case. And for my efforts, my former local endocrinologist decided that my case was closed and there was nothing wrong with my endocrine system. My present endocrinologist has actually apologized on multiple occasions for initially giving more weight to the Mayo's endocrinologists report (did I mention that this was the great Dr. Young) than he did to my clinical presentation. Thank God he finally sat up and took a good look at what was sitting right in his office before it killed me.

    I did have a good experience with some of the departments at Mayo (Rochester) but the specialists that weren't were downright dangerous and appear to have actually been less than completely honest with me or my local docs.

    Did mention that I'd stay as far away as you can from Dr. William Young in the endocrinology department? An amazingly smug little guy who for someone who turned out to to be so wrong on so many levels.

    ETA - Here is a link to my post on the Mayo patient forums: http://connect.mayoclinic.org/discussions/1292-chronic-fatigue-syndrome

    The last doctor I saw at the Mayo Clinic was an infectious disease doc. He felt that much in my history was consistent with a chronic CNS viral infection. Unfortunately, he didn't have anything to offer as far as treatment.
     
    aquariusgirl likes this.
  7. Boule de feu

    Boule de feu Senior Member

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    OMG it wouldn't be a good thing to come face to face with my dear friend, prof. W.
    I think my ME would change INSTANTLY into hysteria.
    I would start screaming and running in circle. LOL

    I think any of these doctors would be a better choice. I wonder how long it would take for me to get in.
    I'm prepared to do one trip, but I doubt I would be able to go back as many times as you did.
    Do you feel a bit better after all these visits?
     
    WillowJ likes this.
  8. Boule de feu

    Boule de feu Senior Member

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    Did you say Young? ;-)
     
    aquariusgirl likes this.
  9. Andrew

    Andrew Senior Member

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  10. Boule de feu

    Boule de feu Senior Member

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  11. floydguy

    floydguy Senior Member

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    I generally like to point out that I am not a typical ME patient - and possibly not in that "cateogry" of neuro-immune diseases - as PEM and fatigue are not major factors. I have all the neurological, immunlogical and infectious markers but no PEM, though I do have low VO2 max....

    The one thing that you get with Klimas et al is the belief that something is wrong with you and the belief that you can improve. That in itself is helpful.
     
  12. jstefl

    jstefl Senior Member

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    I have asked myself many times over the years who I should see. My local doctors are worse than useless, and Mayo doesn't seem to care about CFS.

    I have gone to several conferences and met most of the prominent CFS specialists. I presently believe that until we have a guaranteed cure, it probably isn't worth the money, unless you have enough that it doesn't matter.

    I have been treating myself with better success than what I have had at any doctor. You can buy almost any drug on the internet today. I was able to convince my doctor at Mayo to give me Valcyte, which was very helpful. After taking Valcyte for 8 months, I was better, but still far from being well. Since then, I have taken several drugs purchased over the internet that have really helped. I have gone from being mostly bedridden to being out of bed and doing things most of the day. I still need a nap after lunch, but I am feeling better every day. The latest supplements that I recently started seem very promising.

    I am still waiting for science to catch up with the cause of our illness, but the improvements that I have had make it a lot easier to wait.

    John
     
  13. Boule de feu

    Boule de feu Senior Member

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    Earlier I wrote that I do not have depression. Well, it was true since a few days ago. I'm fighting my third episode of labyrinthitis right now (since January) and I am so sick. I am pretty discouraged that my immune system will not be able to get over this one. My GP was trying to keep my spirits up by offering me this. Something to look forward, I guess. Hope is everything. It does make a big difference.
     
  14. Boule de feu

    Boule de feu Senior Member

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    How do you know that it is the Valcyte that's working? You might be going through a better period?
    Each time I try a new med, I never know if I'm more sick because of the med or if it's just relapse.

    I've never told my GP that I have a scientific background and I have been playing dumb all these years, but today I mentioned that doctors give us antibiotics for strep throat, so why not give me an antiviral for a viral infection. He told me that they don't exist. I wonder if he meant that antivirals don't exist for CFS... He told me that my pain was neuropathic pain. So, I know that it's not something he will go for in the near future. If I ever decide to go this way, I will need to find someone else.
     
    ahimsa likes this.
  15. CBS

    CBS Senior Member

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    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.
     
  16. taniaaust1

    taniaaust1

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    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).
     
  17. merylg

    merylg Senior Member

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    Hi Boule de feu,

    I am working with my GP and he is referring me to various specialists. It's been a slow process & now I have got to the point of realizing I need to be pushy, do my own research & ask for tests I want in order to rule things out. I go into my specialist appointments with a written list of questions & goals.

    Also consider your family history & look out for the common health issues that occur outside of having CFS/ME. Otherwise whilst focusing on CFS/ME you may miss something more immediately life-threatening. Don't expect that any doctor will care about preventative health.

    I have a Rheumatologist, Neurologist, Respiratory Physician, Cardiologist, Endocrinologist, Gastroenterologist, Allergist/Immunologist/Physician, Dermatologist, Opthalmologist & Optician, Physiotherapist, Interventional Radiologist, Ear Nose & Throat specialist...haha my support crew!!!

    I am about to see a Psychologist & my Dietitian. Oh and I have a wonderful Chinese Massage Therapist who trained as a doctor in China, whose whole approach is refreshingly different!!!

    Also come & look at the thread on Hair Mineral Analysis. Some of us are getting improvements on B2 (Riboflavin).
     
  18. greenshots

    greenshots Senior Member

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    Big Fat waste of time and money for both me, my child, and my best friend with severe POTS!

    If your'e looking to be poked and prodded and used as a guinea pig for new doctors, that's the right place. You'll have every test by every dept but you'll crawl away from it just as sick!
    Angela


    QUOTE=Boule de feu;249467]My GP would like to get a second opinion and has suggested to go to Rochester, Minn.
    After reading many stories, I found out it might not be a good idea to travel that far to learn that i'm supposedly depressed (actually, I have severe ME but no depression) or to be offered GET + CBT.
    I can do that here and it won't cost me thousands of dollars.

    However, the stories I have read on the web were all dated.
    I would like new ones if you have the energy to share them with me. ;-)

    What was your experience like at the Mayo clinic (U.S.)?[/QUOTE]
     
  19. Boule de feu

    Boule de feu Senior Member

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    [/QUOTE]

    I'm so thankful for all of your messages! I wonder how I will explain to my GP that I don't want to go anymore when I made him believe it was a such a wonderful idea.
     
  20. Boule de feu

    Boule de feu Senior Member

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    I guess our health system is totally different here. Many don't even have a GP. It's so sad! Babies are being put on a waiting list to see a doctor or parents have to wait hours in ER. Do you have to pay for this team of specialists? With all the bad publicity about ME in UK, I thought it was the same in Australia. I'm so happy to see that you are getting such good care. ;-)
     

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