Chronic Fatigue Syndrome Support Group

**Please note that the following are my opinions based on my own personal experience and of course others may have different experiences. I am not attempting to provide medical advice or recommendations. I am simply sharing my experience in case it is helpful or useful to others.**

Following my visit to Mayo Clinic in Rochester, MN (see post titled "Mayo Clinic Rochester, MN" dated June 24, 2012), I flew to Charlotte, NC for an appointment with Dr. Lapp at the Hunter-Hopkins Center (www.drlapp.com). Dr. Lapp is a consulting assistant professor at Duke University Medical Center and director/founder of the Hunter-Hopkins Center. He has specialized in the treatment of CFS and FM for more than 25 years. Given my lack of income and desperation to find sound treatment recommendations after being diagnosed with CFS at Mayo Clinic in June 2012, I spent considerable time researching the best CFS specialist (for me) to see. I considered Dr. Podell (www.drpodell.org), Dr. Bell (www.davidsbell.com), Dr. Cheney (www.cheneyclinic.com), Dr. Teitelbaum and his Fibromyalgia and Fatigue Centers (http://www.endfatigue.com/resources...

In the end, it was Dr. Lapp's years of experience with CFS and FM, his approach to treatment, the feedback of other patients, and the origin of the name of his clinic that swayed me to see him over the other doctors. Yes, you read that last one about the name of the clinic correctly. You can read the full story on his website (http://drlapp.com/more-hhc/story-of... but the short version is that Dr. Lapp named his center after two young women (Linda Hopkins and Allison Hunter) "because of the invaluable lessons they taught Dr. Lapp" (always listen to the patient, diligently look into all complaints and don't discount them). I was impressed by the fact that even though he could have named the center after himself, he chose to memorialize these two women.

My appointment was at 9:00 on a Monday. My husband and I met with Dr. Lapp's nurse, Nicole, who was very patient and kind. While meeting with her, Dr. Lapp was reviewing my medical records. He went through every report, lab test result, CT, MRI, PET scan, and X-ray (and I mean every one!), then met with my husband and I. I found Dr. Lapp to be kind, comforting, with a gentle sense of humor---an almost grandfatherly manner about him. I appreciated that he was a straight shooter and didn't sugar coat anything (I burst out in tears when he unexpectedly asked me if I had looked into applying for Social Security benefits---I am just not able to absorb that idea yet) but was also gentle in his approach.

My husband and I met with Dr. Lapp for 3 hours, during which time he asked follow up questions regarding my medical records, questions about my health, work, social, family history and completed a physical exam (didn't even have to take any clothes off!). Because of all the testing I had done at Mayo, we only had to do a few lab tests (HHV-6, Epstein-Barr, and I wanted a test done to check for exposure to toxic chemicals like pesticides). He also recommended a tilt-table-test (TTT) given my history of low blood pressure, passing out, and seizures and a bike stress test. I knew from Dr. Lapp's website that he would probably ask to do these test. I tried to have the cardiologist at Mayo order a stress test but she wouldn't saying something about fearing I might fall or pass out on the treadmill. Anyway, she did grant my request for a TTT but Mayo's version of a TTT only involves being upright for 10 minutes while a true TTT has you upright for 30-40 minutes or so. The results of my TTT at Mayo showed that after 10 minutes my heart rate (which was at 98/60 when lying down) dropped into the 70s upon being stood upright and despite my heart rate increasing my blood pressure never got above 82/68 during the 10 minutes I was upright. Still, the test at Mayo was negative because my heart rate did not increase by the magic number of 30 (my max was 21), which would indicate a diagnosis of POTS. I did feel nauseated and dizzy but I did not faint. The report from Mayo actually stated that there did not seem to be an orthostatic reason for the nausea and dizziness I reported during the TTT. Hmmm, heart working pretty hard to get blood flowing through body but blood pressure not going up even after 10 minutes. I guess that's not a problem in their world. Anyway, as much as I wanted to grab onto those test results as evidence that I don't have POTS (yay!), I couldn't. For one, I had suspected POTS since I had the seizures. Secondly, I had to question the validity of the TTT at Mayo. The technicians talked to me and each other during the test....all about a birthday party that one of the technician's was having for her son, yada, yada. Meanwhile, I am shifting around going crazy with discomfort. I did not learn until after the test that there isn't supposed to be conversation during the test and movement should be kept to an absolute minimum. Anyway, that was at Mayo but I am sure you know where this is going.....the TTT at Dr. Lapp's office showed a heart rate increase of more than 30 beats per minute during the first 10 minutes of the TTT. So, yes, POTS. Also, my blood pressure continued to drop (it never rose!) during the 30 minutes I was upright. It was really uncomfortable and I was doing everything I could not to vomit. Dr. Lapp seems to think that my seizures were actually a significant drop in blood pressure that caused me to pass out and have convulsions/jerking. It is called vasovagal syncope.

The bike stress test was also enlightening and yet discouraging. The results showed that my stamina drops off very quickly (within a few minutes) which didn't surprise me. What did surprise me was how poorly I did even when the results were compared to the normal population (non-PWCs) who are sedentary. I am 36 with a BMI of 23.8 and was completely healthy until 2009 (with the exception of a broken ankle at 16 and cold sores I have gotten all my life). So, I was stunned by how easily fatigued my body becomes (you would think this wouldn't have been a big shocker given my energy level, but it was for me).

Dr. Lapp and his nurse were with me the entire time I did the TTT and stress test. I was the only patient he had booked that day and I am pretty sure that it typically how he does things. I was in his office from 9 am to 4:30 pm with a break for lunch. It was exhausting but I preferred to get it all done rather than come back the next day. Dr. Lapp strategically had me do computer CNS test at the end of the day to asses my attention, concentration, and short term memory. By that point in the day, my brain was mush and the test results showed it. Now, I must disclose that I have a doctorate in clinical psychology and (when I was working) often gave similar tests to assess kids for ADHD. So, while I had never had this set of specific computerized tests, I am familiar with them and I know how they work. Despite this, many of my scores were below the 40th percentile and a surprising number were in the 1st percentile. I was shocked. You would have thought I just sat there staring out the window while the test was going on given the scores I got. I kept telling Dr. Lapp and my husband, I really did try. I really did. But the scores also totally back up everything I have experienced with my memory, concentration, focus.

Dr. Lapp reviewed the test results with my husband and I. He told us he would type up his report and mail it within a few days along with a letter to my employer. I asked about his recommendations about work. Now, I over the past 2 years I have cut my hours from 30 per week, to 20 per week and taken a 2-month medical leave. Despite my best efforts, I would always end up crashing after a period of time so I knew that I was not going to be able to go back to work fully and able to have consistent attendance after just a couple of months off. Been there. Done that. But I thought maybe 6 months. When I asked Dr. Lapp what his recommendation is, he told me that while he did not have a crystal ball, he was thinking maybe more like a year or two. Here is where I burst out into tears the second time. My employer has been incredibly supportive throughout all of this. Heck, if I was my boss, I would have fired me a long time ago. And despite their great benefits (which are even better than FMLA), they can only hold my job for a year. So, I have no idea what I am going to do on that front and have, quite frankly, pushed it out of my mind since I don't have to deal with it right now. I think I am secretly hoping for a miracle and that I'll be back within a year....even just a few hours a week!?!?!

If you are wondering about cost, the total bill came to $2600, which included the time for Dr. Lapp to review my records, face-to face time with him, the bike stress test, and the TTT. He did not charge me for the CNS computer (attention/memory) test. The price did NOT include lab fees for the blood draw as the lab will bill me separately for those. That is where having tests done at Mayo really helped as Dr. Lapp only needed to do a few lab tests. I have heard other people say they have had so many lab tests done at Hunter Hopkins Center that they had to give like 30 vials of blood! I only had to give 3. So, that will really cut down on cost. Also, Dr. Lapp makes it very clear that he is not about trying to make tons of money by running lots of tests. If you are able to have the tests done elsewhere (which is what I did at Mayo) and bring the results with you, that is just as good.

Overall, my experience at the Hunter-Hopkins Center (from the time I walked in the door to the time I left) was excellent. All of the staff are wonderful. I walked away with a full treatment plan and realistic hope. A plan and hope. That is really the best thing anyone could give me at this point in my life.

This post has become so outrageously long and I am so outrageously tired that I won't go into the details of my treatment plan. But if you would like that information, just let me know.


In lovingkindness,
Carrie
Posted on 06/24/12, 01:53 am