Dr. Dyck/Mayo recommendations

    • July 27, 2011 at 7:07 pm

      Got my report back from mayo—must say it was very thorough, every test and lab result explained well. diagnosis =atypical cidp. treatment plan=0.4 gm ivig per kg 2 days per week for one month then same dose1 day per week for 3 months. pretty close to his podcast, and must be a common treatment plan for him–I thought i saw it before–did you have this schedule yuehan?
      I have only ever gotten the loading dose (2 gm), every 12 and then every 6 weeks so this is going to seem like so little ivig compared to that—but his theory must be the frequency of it???? comments—what do you all think of this ivig schedule?? Lori

    • Anonymous
      July 29, 2011 at 11:51 am

      In short, yes, I started out on the same schedule in the fall of 2009.

      And, I started a noticeable, ever so slow improvement.

      What do I think of the plan? I think you (everybody) gotta pay close attention
      to your own responses. When you start to fall off, that is, decline, notify your doctor immediately so the plan can be adjusted.

      I have been on 1 day per week since Jan 2011 and will continue that plan until further notice.

      Please recall that when I had several months of 3 days every 3 weeks I got noticeably weaker. Go figure. What I figure is what they told me, “we don’t like to do the high dose, let it drop off, schedule, even if almost everyone (prescribing dose doctors) else does.”

    • Anonymous
      July 29, 2011 at 12:27 pm

      I started out on 0.4gm/kg for 5 days in Nov. 2009; then once/week for 2 months. I was doing so well, I was changed to every 2 weeks, but I relapsed. So, back to every week for 3 months. When I did well on once/week, I was trialed back to every 2 weeks. This was done twice already, but I relapsed both times. It took me 2 months to feel normal again. Currently, I am on every 10 days now, and this seems to work for me.
      Does anyone have a low WBC due to IVIG infusion? My WBC is 3.55–normal is 4.80. I haven’t been sick though for almost 2 years while on IVIG infusion. The antibodies are probably protecting me.

    • Anonymous
      July 29, 2011 at 3:38 pm

      I remember reading a study (forwarded to me from Dawn) awhile ago suggesting frequency was more important that volume.

      I think it’s a good schedule.


    • July 29, 2011 at 9:35 pm

      Thanks everyone for the info—-I’m excited to get started with the new schedule–if all goes well i can start next week—I am changing over from getting them at the Lahey in mass to a local small hosp nearby. Hoping that goes okay–but cant really afford to miss work and go 3 hours away for an infusion now that the frequency is increasing. I was surprised that the increase made you weaker Yuehan—dont think ive ever heard anyone say the ivig did that before.
      No, i have never had low wbc from the ivig—and same with me–have not been sick at all since starting it, even when im near others who are. But I was rarely ever sick before ivig either. Did have a strange thing happen with my blood tests at mayo though—i had just had a loading dose of ivig 3 days prior to my labwork, the dr mentioned that he thought i had hep b??? I have had the 3 series of immunizations for hep several years ago. anyway it turns out–i do not have it—but the ivig can give false positives for it. Lori

    • Anonymous
      July 30, 2011 at 2:01 pm

      Which location does this doctor work at? Phoenix, perhaps?

    • Anonymous
      July 30, 2011 at 5:29 pm

      Elmo – Dr Dyck is out of Mayo in Minnesota


    • Anonymous
      October 11, 2011 at 7:31 pm


      I am at the point, finally, where I am seriously trying to figure out if I can make a trip to the Mayo clinic work for me. What an amazing website and philosophy they have! Imagine…test results available…ON THE WEB…IMMEDIATELY…FOR PAITENTS TO DOWNLOAD AT THEIR LEISURE!! Whodathought?!? :p

      On the plus side…

      My cousin’s wife is the head of nursing there, so I could probably stay with them during my visit.

      I now have three doctors supporting this idea.

      My wife and I changed our insurance, and our current plan would pay for about 50% of the costs.

      On the negative side…

      The “other” fifty percent… 😮

      Could you tell me what this trip ended up costing you? If you’d like to PM me to keep the information private, I’d understand.

      From what I know, they are a very “collaborative” clinic…all the doctors, from every specialty, meet every day to review your test results and discuss. Is that correct?

      How long did you have to wait for a scheduled visit?

      Are you glad you went?

      I just have to do something…things are getting worse, and all my doctors have basically placed me on a “maintenance program”, rather than staying aggressive about diagnoses and better treatments. I fear that if I don’t do something the time will soon come when I won’t be ABLE to do something…know what I mean?

      Many thanks…


      Thanks for your help. Please volunteer any thoughts and information you think would be helpful.

    • Anonymous
      October 12, 2011 at 12:31 am

      Lori, glad to see that you had a great experience at the Mayo Clinic as well. I really liked it alot. But I have to admit-even they don’t have all of the answers to this crazy cidp. I think the doctors need to get onto this and other sites and they would be amazed how much they could learn from the patients. I believe they do the best they can under the circumstances. It’s a trial and error type of thing I guess.

    • October 12, 2011 at 8:56 pm

      My insurance covered all of the tests related to cidp, nerve biopsy, lumbar puncture, etc (there is a post on here with every test they did on me) I am still in the process of appealing a a pet scan that was done due to a paraneolplastic antibody found. The costs of the testing was around 30,000–5,800 of that was the pet scan.
      My out of pocket expenses were airfare and hotel. I stayed at the value place—very basic, no frills , but new and very clean. I paid 180.00 for a week there. They had shuttle service to and from mayo, also to walmart, where you could get groceries. I flew right into Rochester airport, paid a little more for this, as it is a small airport—very easy to manuever. i did use the taxi service, this was also very reasonable priced.
      Mayo was great at scheduling all of my tests and follow up appt with Dr Dyck in four days. My appt with him was on a monday morn, he is very thorough. I started tests that very day. My trip out there would have been all fine–had i not ended up with a severe lumbar puncture headache and then vertigo.
      In the end , yes im glad i made the trip. I have a definite cidp diagnosis and a more aggressive ivig schedule. If no improvement from this 16 week ivig I am going to request plasma exchange.
      If plasma exchange doesnt do the trick , then i am contacting northwestern to see if i qualify for a sct.
      I feel much more at peace just having this plan in place. before going out to mayo, i didnt really have a plan. The diagnosis is pretty definite with a nerve biopsy and lumbar puncture.
      hope this helps–if you have any more questions feel free to ask.
      there are seven centers of excellency listed on here, which people have had great experiences with. i chose mayo mainly because i had listened to dr dycks podcast on ivig dosing and wanted to try it. lori

    • October 12, 2011 at 9:05 pm

      oops i missed some of your questions—I got my date in february and it was scheduled for june. gave me 3 months to arrange airfare, hotel ,get time off from work etc. They did say on the letter to call if this did not work and they would give me another date. They are great—the whole town seems to be somehow functioning around mayo. When i missed my first flight due to being sick from the lumbar, the airline told me on the phone that i needed to pay an extra 100.00 to reschedule. when i got to the airport I had my credit card out ready to pay and the tix agent there told me to “put it away–that they take care of their mayo patients here in rochester” and he’s right –they do 🙂
      as for the testing, each one will write a descriptive report.Dr Dyck will go over each test with you one by one on your final day–follow up appt. some of mine werent ready and i had to wait to get them in the mail. Lori

    • Anonymous
      October 18, 2011 at 1:23 pm

      Thanks, Lori! Hope you don’t mind a couple other follow-up questions…

      *What was the process for getting an appointment? I’m assuming you needed a referral? Was there a records/symptoms/history review done first to “qualify” you to be seen at Mayo? Was there a cost for this?

      *What (generally) was your schedule like each day? Did you have to arrive extra-early…say before about 8AM…or did you ever have to stay later than normal…say 5-6PM? I guess you could have been done in 4 days, had you not had reactions to one test, is that correct?

      *Should I consider contacting Dr. Dyck (directly) ahead of time, to see if he would like to review my history before I go out there?

      Sorry for all this…probably sounds like I’m “nit-picking” or over-thinking things, but I’m trying to make sure I have all my bases covered.

      I could probably get all these questions answered via their website…I’m amazed at how advanced it is, and how user-friendly. Some of their policies are so “common-sense” that it’s incredible…what some people would see as little things, like a) having test results available to you, via the web, at the same moment they’re available to the doctor, b) being able to contact the doctors directly via e-mail, and have them e-mail you back (not their assistants, etc.), and c) giving an estimate of charges prior to coming out, so you can make arrangements with financial institutions, etc. Like I said, it may sound “common-sense” to some, but to those of us who have struggled with the medical community over the years, it sounds like heaven!

      Thanks again for your help. I’ll stop bugging you after this…I promise! 🙂

      Also, did you say somewhere that there is a post that covers your tests and results? I’ll look for it, but if you have a quick link that you could post, I’d appreciate it!

      Thanks again,


    • October 18, 2011 at 9:25 pm

      not at all elmo—im happy to share my experience. my neurologist from Lahey sent all of my info from there to Dr dyck at the Mayo. I told her i wanted to go there and she contacted Dr. Dyck for me.
      The post is “my torturous week at mayo” dont get discouraged by the tiltle—i got a horrible spinal headache from the lumbar puncture, so i was referring to that and tryinh to fly home with headache and vertigo was the worst.
      My first appointment with dr Dyck was 7:30 on a monday—getting there by 700 should be plenty of time. he talked for over an hour with me, then decided on tests. All of my tests were scheduled mon–tues–wed and thurs—with a follow up appointment with him thurs afternoon. its amazing how well they coordinated all of the tests. all of the tests are within walking distance—even for me with my new slower cidp walk–lol.
      they will give you a schedule all printed out for the times, places, test prep—very thorough. i
      If i didnt happen to get the spinal headache–i could have flown home early. on monday Dr dyck asked when my flight was and got everything scheduled for me in 4 days.
      The people at the mayo are extremely helpful—- People at the motel were helpful as well. i stayed at the value place—yuehan had told me about it, its online if you google rochester mn value place. there are no frills here but clean and cheap.
      They gave me a 3 month notice of my appointment so i had plenty of time to prepare, i got the date about 2 weeks after my dr sent out my packet. The timing was very good i thought—being its the mayo clinic!!
      im not sure if dr dyck takes patients directly or if you need a referral from your doctor. There are others on here who have gone there as well—maybe do a ” mayo clinic” on the search button and see if they all had referrals or went on their own. my cell number is 207 890 6324–if you decide to go and have any questions while there call and i will help if i can.
      you will need to take a taxi from airport to hotel—i saved the # right in my cell, was nice to have the taxi in the event you didnt want to wait around for shuttle. i was at the hospitals doing tests mon thru fri. there were always breaks between the tests, but it was easier to just stay at the hospital and just go back to hotel at end of day. feel free to ask any more questions you may have Lori

    • Anonymous
      October 19, 2011 at 10:57 pm

      Lori- Did flying aggravate your cidp?

    • October 21, 2011 at 12:08 pm

      no but it aggrevated my horrendous spinal headache and the vertigo that came with it–on the way home.
      I have found that when I’m stressed or upset it really aggrevates my cidp. This week a long time friend of mine lost her 18 year old son in a car accident. Seems the emotional roller coaster is really hard with cidp.
      I had this happen once before when some complications occured with my sisters baby delivery a year ago and i thought it was due to the prednisone ( i was doing a trial of it at the time) but after this week i think that a lot of emotional stress is very aggrevating to my cidp, made me feel weak and fatigued. Walking seems much more tiring. It is said that our bodies dont know the difference between emotional, or physical stress. I think i would rather have the physical because i can stop that at any time, the emotional not so easy. Lori

    • Anonymous
      October 22, 2011 at 11:35 am


      I am so sorry for your friend’s loss – I know it is shared by many around her, including you.

      I also agree with you as I’ve always found stress to be a factor – good stress seems to give me energy and bad stress sucks it dry!

      I hope and pray your treatment plan continues to be successful.

    • October 22, 2011 at 9:39 pm

      thank you Linda 🙂 about a month left on the weekly ivig—so 3/4 of the way done. Minor improvements, not sure if it will be “wait and see” for a little while after or onto plasma exchange.
      I have mentioned to my dr that if ivig or pe dont do it— then I plan on applying to northwestern for sct. I figure if its onto chemo or immunsuppressants may as well go all the way and do the sct.
      I am glad you are doing well and that your pain is gone. have you noticed strength or sensory changes yet? Lori

Dr. Dyck/Mayo recommendations

    • July 27, 2011 at 7:00 pm

      Got my report back from mayo—must say it was very thorough, every test and lab result explained well. diagnosis =atypical cidp. treatment plan=0.4 gm ivig per kg 2 days per week for one month then same dose1 day per week for 3 months. pretty close to his podcast, and must be a common treatment plan for him–I thought i saw it before–did you have this schedule yuehan?
      I have only ever gotten the loading dose (2 gm), every 12 and then every 6 weeks so this is going to seem like so little ivig compared to that—but his theory must be the frequency of it???? comments—what do you all think of this ivig schedule?? Lori