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Dr Charles Lapp's Chat Transcript from AACFS Seattle Conference

  [ 854 votes ]   [ Discuss This Article ] • January 28, 2001

Please Welcome Dr. Charles Lapp as our chat host. Dr. Lapp began collaborating with Dr. Paul Cheney in 1988, and from 1992 to 1995 Dr. Lapp acted as Medical Director of the Cheney Clinic in Charlotte. In August 1995, Dr. Lapp opened a Charlotte, NC office for general medical consultations, with special interests in Chronic Fatigue Syndrome, Fibromyalgia, and related musculo-skeletal conditions.

Question directed to Dr. Lapp:
jimbo: Is Ampligen only temporary? What is its method of working?

DrLapp: Ampligen works as an anti-viral and an immune modulator. We normally recommend 12 months of therapy, although many subjects choose to use it longer.

Question directed to Dr. Lapp:
jimbo: Any experience with Isoprinosine?

DrLapp: Sorry, but I have no experience with Isoprinosine.

Question directed to Dr. Lapp:
jimbo: Don't most deteriorate after stopping?

DrLapp: The Ampligen response is different for everybody, but many persons continue after it has been discontinued. Most patients notice small deterioration after stopping, but others continue to benefit.

Question directed to Dr. Lapp:
terrysangels4: Where do you stand on the theory of CFS being contagious?

DrLapp: There is no evidence that CFS is contagious, except, perhaps, for the first 3 months after onset.

Question directed to Dr. Lapp:
Mariska: Do you treat patients with mycoplasma infections?

DrLapp: Most patients with CFS or FM are positive serologically for HHV-6, mycoplasma, and other "latent infections," particularly herpes virus infections. It does not appear that treating these patients is terribly effective, but this has been a very contentious issue at the Seattle meeting. You'll hear more later.

Question directed to Dr. Lapp:
jimbo: What is the likely cause of CFS?

DrLapp: Jimbo, you ask, "what is the cause of CFS?" It's like asking, "will there ever be peace in the Middle East?"! There are probably multiple causes for CFS. All we can surmise with some confidence at this time is that susceptible individuals suffer an acute injury that becomes chronic. It is likely that the chronicity is due to a metabolic or a neurological change, although some feel that there may be an immunological change also. Dr. DeMeirLeir of Belgium will be producing a book soon on the etiology of CFS, and I suspect it will be good reading.

Question directed to Dr. Lapp:
TDH: Is it common for the major symptoms of CFIDS to disappear after several years and only be left with the symptoms of severe anxiety and difficulty with memory, especially short term?

DrLapp: I have not seen any cases similar to that which you have described. Most patients improve over time in all spheres, or they reach a plateau. How long you stay on that plateau is dependent upon the individual.

Question directed to Dr. Lapp:
Daisy: Are you aware of any physicians who see CFIDS/FM patients in the state of Georgia? I live in central GA.

DrLapp: I do not know any specific clinics for CFS/FM in Georgia, but suggest that you contact the local support groups. They usually have that kind of information.

Question directed to Dr. Lapp:
Duece: What has been your experience concerning patients returning to work? Specifically, is there still a lot of discrimination against those who have had CFIDS and are well enough to return to work?

DrLapp: I am not aware of any prejudice against a person with CFS, if that is what you are implying. I encourage all my patients to return to work—if they can. The difficult part is finding a way to "test the waters". That is, it is usually necessary to return to work on a part time basis and then increase the number of hours slowly. How many employers can afford to do that?

Question directed to Dr. Lapp:
terrysangels4: What is the best immune supplement for children under 6?

DrLapp: The immune system of a child under six is not fully developed. I would be VERY cautious about administering some supplements to a youngster, and I have no particular recommendation for you in this regard.

Question directed to Dr. Lapp:
JennG: Do you recommend that patients get an IgM test for HHV-6 as opposed to an IgG? And when you say treating these patients doesn't appear to be very effective, do you mean treating that virus with anti-virals, or those patients just can't seem to be helped in any way?

DrLapp: I usually obtain both IgG and IgM HHV-6 serology. What I mean about treatment is that we have NO anti-virals that are really successful in "killing" HHV-6. We know that Ampligen is effective in vivo and in vitro, but it is not readily available. Valcyclovir and Gangcyclovir have not had good success, and the latter is quite dangerous. Foscarnet has had minimal success, but is expensive and risky also.

Question directed to Dr. Lapp:
stevek: Are there any reasons not to get pregnant? Is CFS another form of MS?

DrLapp: There is no reason NOT to get pregnant, as long as you are able to take care of the child post-partum. There is no relationship of MS to CFS except that some of the symptoms overlap.

Question directed to Dr. Lapp:
jimbo: Any idea why, if I overdo it, it's 3 days later that I pay? Why the delay?

DrLapp: It is more typical for patients to have a flare on the day of exertion or the next day, but some patients certainly may be delayed by a day or so. I have no idea what really causes this phenomenon, which is known as post-exertional malaise.

Question directed to Dr. Lapp:
terrysangels4: What did you speak on at the meeting?

DrLapp: I did not speak on anything, yet! I have a couple of seminars this afternoon on clinical aspects and the new name for CFS. We don't have any firm ideas about a name—just collecting ideas. All I DO know is that "fatigue" has GOT to GO! Do you have a favorite name?

Question directed to Dr. Lapp:
stevek: What tests do you need to have done in order to be considered for Ampligen?

DrLapp: To qualify for Ampligen you have to be 18-60, ill, and have no major confounding medical problems like heart disease, asthma, etc. Many medications are excluded, such as gamma globulin, steroids, etc. The tests are used as a baseline and to exclude other disorders. They include: a CBC, blood chemistry, thyroid tests, arthritis panel, ANA, SED rate, ECG, urinalysis, and pregnancy tests. Exercise tests, chest x-rays, and other tests are done periodically. We also check coagulation profiles. Nothing really fancy...

Question directed to Dr. Lapp:
Daisy: What might the future name be for CFIDS?

DrLapp: My favorites are Myalgic Encephalopathy (ME) or something else that would describe the classical symptoms—those symptoms being pain, poor stamina, and cognitive difficulties.

Question directed to Dr. Lapp:
jimbo: Why do fingers and toes get cold during relapse?

DrLapp: There may be many reasons, but two that leap to mind are autonomic problems and low blood pressure, both of which are typical in CFS/FM.

Question directed to Dr. Lapp:
pgboy: What kind of research are you working on Dr. Lapp?

DrLapp: I am working on several projects, but the main one right now is Ampligen. We are doing some chart reviews for physical findings, and trying small pilot studies on drugs like Provigil, Naloxone, and possibly Odansetron. I am interested in learning more about Isoprinosine, which the Canadians and Europeans are reporting about with some good results.

Question directed to Dr. Lapp:
ohokay: How do you use Ritalin for treatment of FM?

DrLapp: Ritalin (and other stimulant drugs like Dexetrine and Modafinil) is used to improve energy and concentration. So in FM, the result would be mostly an improvement in stamina.

Question directed to Dr. Lapp:
keera: Have you any advice for a long term PWC who've tried almost everything to no avail? Anything new?

DrLapp: Keera, do not lose hope! There have been many new options addressed at this week's conference in Seattle.

Unfortunately, we have run out of time. We thank Dr. Lapp for hosting this chat and thanks to all of you for participating. I apologize if we were not able to answer all your questions. Please return at 5:00pm Pacific time today to chat with Dr. Paul Levine.

Click here for past chat transcripts.

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