I think that my patients are some of the bravest, most stalwart individuals ever, and I admire them sincerely. Charles Lapp
Dr. Lapp’s path to medicine and then into chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) was an unusual one. Lapp graduated from the Rensselaer Polytechnic Institute with both Bachelor’s and Master’s degrees in engineering. After doing research, consulting, and marketing in Boston, Lapp turned to medicine and earned his M.D. from Albany Medical College, NY, in 1974. He then completed residencies in both internal (adult) medicine and pediatrics in the University of North Carolina at Chapel Hill.
For almost the next forty years, Lapp maintained a private practice in medicine and pediatrics in North Carolina. First introduced to ME/CFS in 1983, by 1987 he was actively collaborating with Dr. Paul Cheney, and from 1992 to 1995, acted as Medical Director of the Cheney Clinic. The Clinic was used as the base for launching what became the CFIDS Association of America (now The Solve ME/CFS Initiative (SMCI).
Dr. Lapp ran the Hunter-Hopkins Center for the treatment of Chronic Fatigue Syndrome and Fibromyalgia for over 20 years.
In August 1995, Lapp opened his own clinic in Charlotte – the Hunter-Hopkins Clinic – named after two patients who’d provided him with valuable learning experiences. After Allison Hunter’s convulsions were misdiagnosed as hysteria, the young Australian woman died during a grand mal seizure. After Linda Hopkins’s assertion – that she couldn’t breathe while sleeping – had been rejected by her doctors and by hospital staff, Lapp’s monitoring indicated that she suffered from “Ondine’s Curse” – a rare and particularly severe form of sleep apnea.
These patients’ experiences emphasized for Lapp the need to listen carefully to patient reports and diligently look into them.
With regards to ME/CFS/FM, Lapp did a three year stint on the federal advisory panel for ME/CFS (CFSAC), served as a board member for the American Association for CFS and the American Fibromyalgia Syndrome Association, and has been an advisor to both the CFIDS Association of America, the National Fibromyalgia Association, and ProHealth. He’s published numerous articles on ME/CFS/FM and has regularly attended and talked at most IACFS/ME Conference meetings.
Lapp is just one of five awardees of the Nelson Gantz award presented by the IACFS/ME (international professional society of ME/CFS) to physicians “who emulate Gantz’s clinical acumen, his passion for medicine, and his empathy for persons with ME/CFS and FM.”
Lapp has had a special relationship with Ampligen. His Hunter-Hopkins Center was one of only two sites to administer it in the U.S.. Prior to the FDA hearing on Ampligen, Lapp’s statistical analysis of his patients on Ampligen indicated that the drug was effective.
The Hunter-Hopkins Center was one of the few clinics, as well, to embrace the exercise testing techniques pioneered by Staci Stevens and Workwell, and to use them to establish heart rate and exercise guidelines and to assist in disability evaluations.
In the Lord interview, Dr. Lapp talked about some of the things that didn’t work out in ME/CFS/FM (heparin, oral Interferon, ambotrose/mannatech, oxytocin, treating oxidation radicals) and some that did (B12, dietary changes, CoQ10 and Krebs Cycle intermediates such as malate and magnesium, aquatherapy, and Ampligen). An active clinical center, the Hunter-Hopkins Clinic, under Dr. Lapp’s direction, has participated in 17 ME/CFS and fibromyalgia studies. It’s one of seven U.S. centers to participate in the CDC’s Multi-site trial.
After over thirty years of caring for chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) patients, Charles Lapp retired this year. Lapp is one of a small group of pioneering doctors who, in the face of great disagreement in 1980’s and early 1990’s, supported people with these diseases. That group includes Dr. Peterson (practicing), Dr. Cheney (retired), Dr. Lerner (deceased), Dr. Bell (retired), Anthony Komaroff (no longer practicing), Dr. Jay Goldstein (retired) and Susan Levine (practicing).
I asked Dr. Lapp for a chance to look back…
The Interview
Do you remember how you first heard of ME/CFS?
Most people don’t realize that one of the first “epidemics” of ME/CFS occurred in Raleigh, NC when I was developing my medical practice there. The entire North Carolina Symphony fell ill with a flu-like illness in about 1983, and many members never recovered from it, including the conductor, Jack Parkhurst. This was later investigated by the famous epidemiologist, Seymour Grufferman from Duke University, because the outbreak was followed by a cluster of B-cell lymphoma cases. (He later concluded that this was unrelated.)
What really got me involved, however, was another outbreak following a Thanksgiving dinner thrown by a Fortune 500 Company in Raleigh, following which several executives and family members fell ill with mono-like illnesses that persisted. The executive VP commissioned me to explain why he could work one day and then had to rest for two days to recover. When he referred several friends and colleagues to me, I reported the epidemic to the CDC, and that is when they connected me to the work being done in Incline Village and Lyndonville.
- See a list of outbreaks here
I was seeing several “chronic fatigue” patients at that point and sharing histories and blood work with the CDC. I really got hooked, however, when my lab tech sent a blood sample by error to the HIV lab instead of the routine virology lab. The CDC called back and reported that they found “evidence of a retrovirus” in the sample, which seemed to trigger that “snipe hunt” for a retrovirus in the late 80’s and early 90’s for a retrovirus in Chronic Fatigue Syndrome!
What prompted you to build one of the very few ME/CFS/FM specialty clinics in the U.S.?
In order to consolidate efforts, Dave Bell and I would commute one week each month to Charlotte, where the Iverson Family had provided incentive to set up a Center of Excellence – the Cheney Clinic. (We had wanted to call it a generic name, but Cheney jumped on the opportunity to put his name on it!) In December 1991, I took a sabbatical from my family practice in Raleigh and moved to Charlotte. This turned out to be a permanent move! Dave Bell soon got tired of the commute and took a job in Boston. He later returned to Lyndonville. In 1996, Paul Cheney and I had a falling-out over ways to run the practice and I set up my own practice in Charlotte. As you know, he moved to Bald Head Island, then fell into ill health.
How many ME/CFS/FM patients do you estimate you’ve seen since 1987?
In the past five years, Lapp has finally been getting significant numbers of referrals from confused doctors.
For the first 20-plus years I would consult on 5-6 patients per day, 5 days per week, 47 weeks per year. That’s 1,175-1,410 consultations per year for over 20 years. Then I cut back a bit to about 1,100 patients per year for the next 15 years, so I am estimating about 40,000 to 45,000 consultations in my career. I’m getting tired just thinking about it!
You were one of our pioneers – one of the few willing to take on these illnesses decades ago when there was almost no acceptance of them in the mainstream medical profession. Even now, thirty years later, they’re still not taken seriously at times. I’m sure many of your peers thought you were nuts to focus on these diseases. Can you gauge how the reception to ME/CFS and FM has changed over time among doctors. Have things improved much?
Early on I was ridiculed terribly and considered a charlatan or a “snake oil salesman”. Fortunately, I had known one of my first CFIDS patients when she was in good health and she fell ill suddenly after the Fortune 500 dinner, so I was confident that there clearly was some pathological disorder going on. I was also supported by her psychologist who reassured me that she was psychologically stable and intact.
In the past 20 years, as Fibromyalgia and Chronic Fatigue Syndrome have become better known, physicians are still reluctant to accept the diagnoses, but they have come to me with questions and asked for advice. Only in the last 5 years, however, have I been receiving numerous referrals from outside physicians.
If you were to give one (or two) pieces of advice to a new physician entering this field, what would it be? (Run??? :))
Spend time with one of the respected experts and learn as much as you can about the basics of this illness. It is very complex and at this time I think very hard to learn on one’s own. (We really need to develop a basic teaching curriculum for those who are interested in diagnosing and managing ME/CFS.)
If you were to give one (or two) pieces of advice to a new ME/CFS/FM patient, what would it be?
Get help as early as possible. Read as much as you can from reputable sources. Seek out a supportive primary doctor and then at least annually consult an ME/CFS specialist.
Anything you’d like to pass along on the treatment end that the average ME/CFS/FM patient might be unaware of?
The most important aspect of management is pacing (balancing rest with activity), followed by the management of sleep and pain. There is no cure, so medical management is purely palliative. While diet is helpful (avoid processed foods, minimize dairy and gluten), most supplements and herbals generally add little and may be harmful.
You began to specialize in this field in 1987. Did you think back then we would be further along than we are, treatment-wise?
It is very discouraging, yes, but then I look at the field of cancer and I thought that we’d have that licked by now, too. Cancer, too, is very complex. I think that cancer and ME/CFS have one thing in common: multiple triggers. Just as various cancers can be caused by smoking or sun exposure or aniline dyes, etc., I think that ME/CFS can be triggered by viruses, bacterial infection, inflammation, trauma, etc. Until we recognize this and separate the subsets, I think that prevention and treatment will be slow in coming.
If you could have been granted one wish that would have made your life as an ME/CFS expert easier, what would it have been?
To have Ampligen /rintatolimod approved by the FDA. I am convinced that this drug truly helps many persons with ME/CFS and should be made widely available.
Do any specific patients stand out?
MANY patients stand out. I think that my patients are some of the bravest, most stalwart individuals ever, and I admire them sincerely. I regret that I am not able to continue helping them, but hope that these 40 years of service have helped a large number of PWCs (persons with Chronic Fatigue Syndrome) to get a foothold on this dreaded illness.
Specific Treatments
How have the big three in fibromyalgia (Lyrica, Cymbalta, Savella) worked for you?
Absolutely. These are great tools for some – but not all – patients. Of course, they address mostly pain and mood.
You’ve been public about your worries that opioid pain killing drugs are going to be off-limits for FM and/or ME/CFS patients who might need them. Can you say anything about that and about possible alternatives?
Ampligen is the one treatment Lapp wished he could have had more access to.
Shame, shame on the critics who state that opioids should never be prescribed to persons with FM or ME/CFS. They should suffer this kind of pain for just a day or two! Based on little evidence, mostly in laboratory animals, they predict that opioids should not be useful in PWCs. However, survey after survey of patients with fibropain list opioids at the top of the list as most effective for pain relief. Why ignore the real life data?!
And why make people suffer based on theoretical data? I agree that opioids should be avoided whenever possible, but not excluded if needed.
How about low dose naltrexone (LDN)?
A wonder drug! I was the medical director at AFSA (American Fibromyalgia Syndrome Association) when Jarred Younger submitted his letter of intent to originally study LDN. I was delighted to approve the seed money to study this drug. LDN has now become the go-to treatment for mild-to-moderate fibropain in PWCs who are narcotic naïve. It also has immune effects, and some say it positively affects sleep and fatigue as well. Most specialty clinics are now using it widely.
It’s possible to spend a lot of money on supplements. By and large, how effective have supplements been?
In my experience, the most effective supplements have been methyl-B12, Vitamin D3, magnesium, possibly d-Ribose, NADH, DHEA, and glutathione in selected patients. Other than that, most supplements and herbals have not been terribly helpful, and sometimes even problematic.
You were one of the few doctors to incorporate exercise testing into your practice. How did you come to do that and how did you use it?
Exercise testing was started as part of the CDC evaluations very early on when we recognized that patients experienced post-exertional malaise. Back in the 1980’s, however, it didn’t have a name! We just knew that when patients pushed too much they paid a price and we wanted to know: (1) why; and (2) if we could predict how much they could push. That’s when we started working with Staci Stevens, Chris Snell, Mark VanNess, etc., to discover that the anaerobic threshold (AT) was key. Thereafter, we learned to keep PWCs within their AT to prevent flares and relapses.
Do you have any thoughts on where the breakthroughs in treatment are likely to come from?
Paul Cheney and I always thought the problem was systemic, probably metabolic and mitochondrial. You probably recall that we attributed the problem to a breakdown in or around the Krebs Cycle, which is why early on we prescribed Krebs Cycle intermediates like P5P, B6, NADH, ketoglutarate, succinate, malate, B12, folate, magnesium, CoQ10. These helped a little, but certainly were no cure. Unfortunately, we still do not have the tools to fully understand what is going on in the mitochondria. I thought that Mella and Fluge were on the right track when they suspected blocking antibodies at the level of phoshodehydrogenase, but apparently this has not worked out.
Have you had patients who have recovered, and if you have, can you make out any reasons why one person recovered while the others did not?
Since my retirement, many patients that I have not heard from have written to congratulate me and thank me for helping them to “recover.” To the person, they cite pacing and setting limits as the major thing that helped them most. I cannot emphasize that enough!
You’ve spent a substantial part of your career caring for ME/CFS and FM patients. The patients really appreciate that and it showed real courage. This has been a frustratingly slow moving field, though. ME/CFS, in particular, is known as a particularly difficult disease to treat. I’m sure that it’s been frustrating not to be able to offer patients “the” answer or even many times, I suppose, something that will really significantly help improve someone’s functionality. How has that been for you? Any regrets in taking ME/CFS/FM on – on having it be such a big part of your career?
No regrets! I have had such fun, and I have learned so much in treating PWCs. It has truly been a wonderful journey, and I hope to continue on the journey in some small way…
After seeing many patients over the years, if you were to guess, how many subsets do you think there are? A couple, over five, over ten? Or is everyone manifesting the same thing in different ways?
I keep a rough list and there are over twenty subsets on that list now.
You’ve participated in this field a lot. You’ve been at, and I believe have spoken at, all the conferences; you were on the federal advisory panel for ME/CFS; you’ve advised many groups including the SMCI, National Fibromyalgia Association and ProHealth and written many articles. What are you going to do now? Will we see you at the IACFS/ME conferences?
I hope to stay connected, yes. If they will have me, my dream would be to develop a web-based “beginner’s course” for the IACFS/ME so that any individual interested in learning about ME/CFS can easily get information and even accreditation. What do you think?
I think that’s a great idea 🙂
Dr. Vincent Hillman – the new leader of the HHC – has a family member with a long-standing case of ME/CFS.
The Hunter-Hopkins Clinic After Dr. Lapp
Dr. Lapp is gone but the good news is that his shoes were quickly filled (as much as possible) by a local practitioner, Dr. Vincent Hillman (another doctor who also originally trained as an engineer). Dr. Hillman vows to “keep the practice almost exactly the way it was when Dr. Lapp was at the helm.” Dr. Hillman’s interest in ME/CFS derives from a family member who’s suffered from it for almost a decade.
- Learn more about the Hunter-Hopkins Clinic in Charlotte, North Carolina.
It’s a shame that Pioneer doctors who believed and treated CFS formerly known as cfids are retiring. Hopefully they trained others to help us. Thank you Doctor lap
Chronic Fatigue Syndrome is a rare condition ,as is having a supportive person in all aspects of your life.I am a female Canadian health care worker that was stricken with this in 1988 May and been suffering .I have seen all types of people to do with this condition and they are not knowing anything, and look for ways to get off for damages along the way. Mostly the policing bully that wants to know what they can do ..This is a tactic to give more power to the defendant that’s physically injurous to me with to this rare condition.I am suffering damages
I had no idea about the history here! Thank you, Dr. Lapp, for all you have done for patients and for this field!
I think a beginner’s course is an excellent idea — I really hope you can do this. The field urgently needs to retain all this hard-won wisdom from our ME experts who have been in the trenches for decades.
One question: As Dr. Lapp says here, I have also always read that it is important to get help as early as possible. Many patients are either not diagnosed immediately or not told the importance of pacing until perhaps too much time has already passed — I wonder if Dr. Lapp believes patients can really avoid falling to a very low functional capacity if told to pace very early on?
I’ve read some anecdotal reports from patients who *were* diagnosed very early after disease onset, yet were not still not able to prevent the decline in functional capacity despite diligent pacing.
The trouble in my experience is, that even with “early diagnosis”, prior to the internet it was impossible to discover advice about what was truly effective. And even today, there is a lot of “semi helpful” information that nevertheless does NOT emphasize the prime importance of pacing and avoidance of anaerobic exertion (and I would add to that, if you have FM rather than CFS, avoidance of anything “muscle strengthening”).
I spent more than 20 years battling on doing the wrong thing – an endless cycle of pushing myself too hard and crashing; while I was trying numerous other things that should have helped (supplementation, massage, diet, etc). But failing to “pace” and failing to avoid anaerobic activity (and muscle strengthening activity) sabotages everything else you might be “doing right”. I would even wager that the known “effective” drugs will be sabotaged in their effectiveness by inappropriate exertion and pushing oneself too hard.
In 2013/2014 I finally gained some crucial insights and started doing a combination of “right things” including the right level and quantity of exertion; I have been posting comments on this site about the improvements I have experienced. I think I am around 80% better now, and can do a lot of things that ordinary “merely unfit and deconditioned but otherwise healthy” people cannot. For example, if I dropped something and it rolled underneath a couch, just 5 years ago, I would have groaned in despair about the painful process I faced in getting down on the floor, retrieving the object, and getting back up again. Now I just “drop” like a normal agile person without even thinking about it, and co-ordinate the right movements (learned from Feldenkrais) to stand back up again quickly and near-painlessly. 5 years ago my legs were on fire with pain climbing even a single flight of stairs; now it is near-painless.
With the right information, I could have done all the right things 25 years ago, but I didn’t have the right information, and even now I know of almost no sources that have it, amidst thousands of sites that have all the downbeat “cope the best you can with the tool kit of painkillers we have so far” sort of advice. If I had the advice Dr Lapp describes, that he seems to have formulated as long as 25 years ago, I probably would have recovered at least as spectacularly as I have now. Even if I was not doing all the things I am doing now, the essential “right things” Dr Lapp understood, would have made the crucial difference – and back then, I obviously did not have 25 years of built-up toxins and chronic adhesions and parasitic muscle tensions through counter-productive conditioning (from dysfunctional muscle fascia).
What a fascinating study that would make. My guess is that some people would benefit greatly from pacing early – enough to recover or at least stop the decline – while some others would just continue to decline.
Well done, thou good and faithful servant. May you enjoy your retirement. Thanking you, Janet
Many, many thank yous to Dr, Lapp. He has been the light in the darkest night for so many CFS/ME and FM patients.
VERY interested that he and his colleagues understood the vital importance of the “anaerobic avoidance” strategy so long ago, I am sorry I did not learn of it myself until about 2013, and even then, I never learned of the name Dr Charles Lapp.
He also mentions some of the supplements I regard as extremely important in my long steady “recovery” from FM. I think Dr Lapp’s patients with FM should have had a good chance of recovering like I have, if they followed his advice. But I do think CFS is a different condition that needs something else than the pacing, anaerobic avoidance, and supplementation that I believe is effective for FM. Possibly I have recovered better than Dr Lapp’s FM patients because of some extra things I include in my own protocol; Paleo diet; stretching in a spa pool; Hair Tissue Mineral analysis to guide supplementation and de-toxing; THEN once some progress has been made; add “fascia release” massage from a Robert Schliep trained expert; Qi Gong massage from a practitioner who understands FM; and Feldenkrais “Awareness Through Movement” lessons.
Can someone explain the “anaerobic avoidance strategy?” I had thought it was the aerobic threshold we were not supposed to exceed, due to problems with our aerobic metabolism. Thanks.
Hi Amy,
I just posted an explanation of the “anaerobic avoidance strategy”, in my own words, from what I’ve learned from reading & listening to Workwell Foundation’s work over the years (Staci Stevens, Chris Snell, Mark VanNess, Todd Davenport, Jared Stevens) — it also includes links to a video presentation by Staci Stevens that explains it clearly.
I hope it helps you!
An Overview of Pacing and the Energy Envelope Hypothesis
I think this is a different issue for people with FM, like me, versus people with CFS. I think it is a mistake to treat these two conditions as “the same”.
I think what “Waiting” is saying, is correct for people with CFS. I think regarding energy metabolism dysfunction, people with CFS are much unluckier and have a much more complex problem than people with FM – but the pain and muscle tension and limited “range of movement” is what is so bad about FM.
With FM, I think it is merely a matter of avoiding anaerobic exertion, period – and also avoiding “muscle strengthening” forms of exertion (weights, push-ups, etc). I think the problem in FM is that the post-exertion recovery system, the removal of post-anaerobic exertion toxins, is disabled in some way, so these toxins linger in the muscles forever, which helps to explain the adhesions, knots, lumps, bands, etc.
But in CFS, it is something in the energy metabolism itself that is disabled, so the muscles literally are not getting to “burn fuel” at the level they should be. I think “Waiting” is correct to say that one consequence is that the anaerobic metabolism is constantly defaulted to when it should not be. So “pacing” is much trickier to get right.
Muscle deconditioning becomes a co-morbidity very easily under these conditions. In FM, muscle deconditioning is also a potential complication, as the anaerobic metabolism starts to be initiated with “easier” movements than it should be. FM patients are trapped between two rocks (like Odysseus in the legend). They either remain active and endure constant pain from the activity; or they become exertion-avoiders in which case muscle deconditioning ends up making even taking a shower or carrying a shopping bag, an “anaerobic” activity. So the pain is inescapable. Some patients spiral down so far that they end up bed-bound – and still in pain. A likely complicating factor is that “movement” itself is necessary to keep “toxins” moving and prevent “adhesions”, which I believe is the main problem in FM. So a bed-bound patient is in pain from the slightest movement precisely because the lack of movement is allowing adjacent muscle fibres (or rather, the fascia) to become “glued together”, and “unsticking” which occurs with movement, is painful.
CFS is not this. I think is quite possible that some very unlucky people have both FM and CFS, because they are two different conditions. Whether one triggers the other in some people….? This seems to be not a foregone conclusion, as most people with FM do not have CFS. A lot of people with FM might be thought to have CFS, simply because the nature of FM does cause fatigue. Starlanyl’s book suggested something like 270% extra exertion from using an arm or a leg, for example, simply because of the high level of friction in the muscle fascia. This quite logically causes fatigue, but it is not the same as CFS where the energy metabolism itself is broken in the first place and the muscle is not even burning energy fuel, hence the weakness.
Thank you Dr, Lapp and Wendy for taking care of me in 2011!
Dr Salvato is treating my symptoms and testosterone therapy has improved my ability to get around. Good bless and best wishes !
Congratulations. We have a testosterone blog coming up 🙂
Do you have any opinions about DHEA, Cort?
Not really. Just that I’ve heard that its helpful for some and doesn’t work for others.
Dearest Dr. Lapp, There are no words to truly express our collective gratitude for your immense dedication, incredible expertise, overflowing kindness with compassion, keen understanding of our delicate life balance & your delightful sense of humor. No doubt, we all wish you a long, happy retirement. That said, we know you will never abandon the elusive search for answers for PWC’s. Endless thanks as your colleague, Dr. Laura Black, has substantially increased my Quality of Life since I first saw her in March 2017. We will miss you, but hope you & your family will relish every moment together! ❤️
Thank you Dr. Lapp! Enjoy your well earned retirement.
P.S. Dr. Derek Enlander is another pioneer in this field and practicing in New York City.
Yes. Thanks for mentioning him 🙂
I was not privileged to be a patient of Dr. Lapp but I have followed his Pacing advice as best I could and it was a tremendous help. Thank you for your long dedication and service to all of us with ME/CFS and Fibromyalgia. I suspect you have touched many thousands of lives of which you are unaware. Mine is one of them. I hope you thoroughly enjoy your well deserved retirement.
I do not know Dr. Lapp except that he is an MeCfs pioneer. Many thanks to him for the wonderful work he has completed in our illness field.
If I lived another lifetime I would certainly like to have a career similar to Dr. Lapp’s. It’s a career worth working in, and a career worthwhile.
Thank you Dr. Lapp; may God bless you every day of your life.
Hi,
does anyone know if there is a doctor in Europe who gives Ampligen to patients?
THANK YOU!
I’m pretty sure that De Meirleir used to. Don’t know if he is any longer.
He retired half a year ago. A well deserved retirement. He has been a great pioneer as well.
Good retirement you too dr. Lapp. May it be in good health and fortune.
This comment came in from Nancy
Thank you so much for that interview. Right now I’m fighting tears as I know we no longer have that wonderful man to rely on as our go-to doctor.
I suspect there are many like me who knew him personally – more than as a patient – who want to write a special thank you. He was always answering emails for me so that I could pass on info to people who couldn’t afford to go to him or lived too far away. That’s just one thing.
Dr. Lapp deserves the equivalent of a nobel peace prize. He’s a true dedicated humanitarian. He has a wide base of expertise.
His approach us certainly not a cookie cutter approach as that wouldn’t work.
I dare say what would have become of me had I not found Dr.Lapp.
How did I find him do you ask? I was on a facebook page in 2008 that was called mothers with CFS, I think there were 4 of us. One of the participants who I now consider a lifelong friend gave me his name.
Dr. Lapp connected the many dots that nobody else could connect.
He recommended Bruce Campbell’s coarse and that was extremely helpful. I’m so grateful I am no longer home bound to the extent I was when I first saw him.
I owe my level of recovery 100 percent to Dr Lapp and 100 percent to me. We made a good medical team.
God bless him in his retirement. Most medical students strive to treat, heal and move on but Dr Lapp embraced a patient population that he had no cure for. It’s pretty noble if you ask me. Happy Retirement Dr. Lapp
I love it! “I owe my level of recovery 100″ percent to Dr Lapp and 100 percent to me. We made a good medical team.”
🙂
I agree with all the positive comments about Dr. Lapp- both
about his character and his scientific brilliance. I actually don’t think he charged enough
for the care he gave me; so it
is really annoying to read the
comments from Kate. They truly
are not just or accurate. Just the
suspicious facts surrounding the
outbreaks probably indicate that
there may be some common link
someone hasn’t discovered, or
is wisely not putting on the blog.
The new DNA info available by
genetic testing may give some
clues; but determining who to
trust with that task is a sensitive
issue from what I have read. There was a cancer cluster in our
area that took decades to be able
to prove actual facts. Denied for
decades, it was finally proved that a toxic waste site in the area
had a definite impact in the people – mostly children- who either died or were battling rare
cancers. It would not surprise me
if in years to come, a common factor will be proved for each
outbreak and the link- perhaps
genetic- that caused some people exposed to a viral agent
deliberately or some similar ethical dilemma. perhaps environmental ,cultural or political. For now, I am just grateful I had access to the good
care and good science recd from
HHC when initially diagnosed.
I am not ruling out biowarfare
since mine occurred in conjunction with the arrest and
conviction of three terrorists who
worked in the same building I
did when I first had symptoms.
They did not like my politics or
my faith. They are convicted
proven terrorists. It is possible
this was a factor. Maybe, maybe
not. God knows ; and He can
see that it is discovered, exposed, and handled through
proper legal channels by those
in legitimate authority. Reading
all the comments from people,
I just truly think Kate’s accusations are unfounded. Dr
Lapp used the method of charging less but still making
care available for those of us
who are not independently
wealthy. How is that lucrative?
I am so glad he has the means
to retire! I think he deserved far
more than I paid for care. Maybe
someone is jealous. Maybe there
is a coverup. If so- in time it WILL
be proved and he will be vindicated.
Cort:
Do you have any idea if Dr. Lapp would be willing to share his list of 20 subsets? That would be fascinating.
It’s good to see that Dr. Lapp has a successor. Here in the southeast, his clinic is a source of pride and hope. I’m particularly glad to see that he plans to stay involved in ME/CFS education, especially when the doctors can receive accreditation for learning more — Thank You, Dr. Lapp!
I first saw Dr. Lapp in1995 after hearing about him from a CFIDS support group in Greensboro North Carolina. I had sudden onset of the disease after radiation therapy for breast cancer and a life of many immune system issues. I was 41.
My primary doctor had diagnosed me very quickly with Fibromyalgia and was treating me when I joined the support group. Dr. Cheney and Dr. Lapp were names that I heard at the support group. A patient of theirs told me that Dr. Cheney was the more scientific doctor and Dr. Lapp was the more patient oriented doctor. I chose Dr. Lapp and have seen him every year since my first appointment in March 1995.
Dr. Lapp literally saved my life. He is the best doctor I have ever known. He took the time necessary to listen to my concerns; he believed I was being truthful and showed utmost respect for me; he absolutely knew the science behind the disease including what was helpful and what was harmful; and he developed a total plan for me to follow that he gave to me in writing before I left his office. This was in 1995 when very few doctors had even heard of the disease and, if they had, they thought it was just depression or hysteria!!
I just had my last appointment with Dr. Lapp a few weeks ago and I met Dr. Hillman. I will be continuing to go to Hunter Hopkins as I have complete faith in the protocol Dr. Lapp has developed and that Dr. Hillman will be following. As my doctor Dr. Lapp helped me go from the dark hole of ME/CFS to being strong enough to raise my children, continue my career on a part time basis and to now enjoy spending time with my grandchildren. My entire family thanks you from the bottom of our hearts and we hope you will have a wonderful retirement for many many years. It is well deserved!!
What a wonderful tribute Vicki. I hope to have a part II interview with Dr. Lapp.
That would be fantastic Cort! I know Dr. Lapp will want to continue to be a big part of this community!
Dr Lapp is still working 1 day per week. I’ve never seen him BUT this week I have an appointment with him that I’ve been on a waiting list for, for 1 1/2 years and I am beyond sooooo excited to be his patient!!! Did you ever get a part 2 interview with him? Any other information to share? I’m super curious about the 20 subsets, I think mine for sure is vaccines. I always love reading your blogs Cort!!! Keep up the amazing work!!!
Good luck! Unfortunately, after receiving them twice from him, I lost subsets :(. I hope to get back in touch with him at some point 🙂
https://www.healthrising.org/blog/2018/03/28/lapp-chronic-fatigue-syndrome-fibromyalgia-pioneer-retires/
Dr. Lapp, I (and many of your other grateful patients) cannot thank you enough for ALL you have done with your vastly developed expertise, amazing kindness, and TLC to alleviate your patients’ suffering who endure numerous debilitating issues and agonies.
I treasured the times I was able to visit HHC and receive your VERY helpful advice and helpful meds. Very sadly, traveling from (/to) my home to HHC became too difficult.
The Cymbalta you prescribed for me was THE most helpful in my quest to “reduce” the “perceived” pain levels of FM. One of my doctors now continues to prescribe Cymbalta for me for FM issues.
I am currently in a local aquatics PT therapy program which is often more than my body can handle (slow recovery: from pain and energy drain, et al.), but I’m MASSIVELY determined to stick with it as LONG AS POSSIBLE.
Have also been diagnosed (via whole body scan) with osteoarthritis in every joint in body. Ergo, FM pain in muscle fibers with concurrent joint pain and mobility issues persist in wreaking agonies.
AND, I have finally accepted (after trying not to accept it for many years) that I am no longer able to conduct my life “@Mach 10 with my hair on fire” but, I shall not give up questing more functionality/mobility in my life. Point: I have (albeit reluctantly) learned the VALUEs of pacing myself and patience.
When Dr. Rice (Rheumatologist and researcher re: severe childhood growing pains (et al.) linked with FM] at Duke retired, it was a truly sad day for his FM patients. Your retiring is also inevitable as well sad for YOUR patients, but know this, Dr. Lapp: YOU HAVE HELPED MANY PATIENTS bring some relief into their agonized, painful lives. Thank you beyond dearly.
I wish you much joy and awesome adventures in your new phase of life: retirement.
To play devils advocate here regarding the undiluted admiration for Dr. Lapp; his amicable disposition and willingness to validate his patients concerns where so few other practitioners have done so allow him to operate lazily, if not irresponsibly. Opiates serve a very important role in pain management, but they are not the only player and still come with risks that require diligence that Lapp, in the best case scenario, did not have adequate time to take and in worst case scenario, did not bother to take because of the sheer amount of money he was able to make.
I find the persistent hyperbolic rhetoric around HH to be dangerous because it minimizes the role and the responsibility providers have in prescribing opiates. NO ONE should have to live in pain, but every patient deserves careful monitoring of efficacy and screening for adverse effects. This is by definition the role of a provider and one that I found Lapp to be more than willing to shirk, perhaps because it is the least lucrative.
Dr.Lapp provided narcotics to help relieve my pain. I saw him from 1996 until 1999 on a regular basis. He was the only doctor that understood CFS at that time that I could find. I only stopped seeing him when he could no longer see patients on Medicare. My regular insurance stopped and Medicare started when Social Security finally approved my disability. Dr. Lapp helped many people fight for their disability income. I had to drive from Burlington, NC to Charlotte, NC but the drive was well worth it. I can’t find another physician to prescribe the B-12 compound to use in relapses since they only think it is for anemia or such and only give the lesser strength shots in their office.