Dr. Lapp protocol questions

Discussion in 'Fibromyalgia Main Forum' started by kimberly236, Mar 28, 2007.

  1. kimberly236

    kimberly236 New Member

    Hi all. I'm Kimberly, a 30-year old with severe CFS. I was diagnosed in 1998, partially recovered VERY SLOWLY but surely until summer 2006, when I relapsed and am still worse than ever. As everyone knows, it's awful stuff.

    The reason I'm posting is that I am interested in following Dr. Lapp's protocol but I am too sick to make the trip to see him. I am hoping to take some specific info to my doctor and see if he will try some things that Dr. Lapp does.

    To anyone who has seen him:
    1. What specific meds and dosages did he prescribe?
    2. What specific vitamins and supplements did he recommend?
    3. What specific blood tests did he order?
    4. I am particularly interested in the B12, sleep meds, and Nexavir, among others.

    I would appreciate as much feedback as possible.

    Thanks so much. I have been lurking here for a while, and everyone seems so nice. Any help would be greatly appreciated. I am getting desperate.

    Kimberly
    [This Message was Edited on 04/23/2007]
  2. Fmandy

    Fmandy New Member

    Hi Kimberly and welcome to the board :}

    I have just recently become a big fan of Dr. Lapp. I think he has the best understanding of CFS and FM at this point in time. I read his review/critique of each of the leading world researchers at the last CFS and FM Conference. He basically said balderdash to an idea of one doctor that is very famous for research and treatment in this field.

    I will try to find this website, and conference information for you, if you have not read it.

    The information below is from this site, but is from 2002. Still if you get the time, it is worth reading. I plan to research more of his ideas and treatments as soon as I get my mind focused. I don't know when that will be :}

    This board is filled with intelligent, friendly and very supportive people. Some are extremely knowledgeable about herbs and other natural remedies that really work.

    Kindest regards,

    Andy

    ---------------------------
    Charles Lapp, M.D., on the Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia

    ImmuneSupport.com

    10-09-2002

    Charles Lapp, M.D., is nationally recognized and sought after as a medical consultant regarding CFS and FM. He is Co-Chairman of the Clinical Affairs Committee for the American Association for CFS, medical adviser to the CFIDS Association of America, and a board member of the American FM Syndrome Association. Dr. Lapp is currently Director of the Hunter-Hopkins Center, P.A., Medical Consultations, in Charlotte, North Carolina, where he is a practicing physician, and is also Assistant Consulting Professor at Duke University Medical Center in Durham, North Carolina.

    ImmuneSupport.com: When did you first become aware of Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM) as valid illnesses with real symptoms (what were the circumstances)?

    Dr. Lapp: I had never heard of CFS or FM until 1984, when the VP of a Fortune 500 company came to me and described a debilitating illness that was triggered by the flu, and prevented him for working more than 1-2 days per week. Soon after I began researching his case, a similar case presented to my office, then another, and another. Before long it became clear that many of these cases were related, so I called the CDC to report a possible epidemic. The CDC put me in touch with two other groups (Dan Peterson and Paul Cheney in Lake Tahoe, and David Bell in Lyndonville, NY) who were experiencing similar epidemics in their towns, and thus began my new career and ambition! As you probably know, Paul, David and I collaborated together in Charlotte, North Carolina, for several years, during which time we pretty much set the foundation of our clinical knowledge today.

    Most doctors who study both CFS and FM find the two disorders so similar that we consider them “identical” for all intents and purposes. There are some subtle differences, however. CFS is most likely triggered by an infectious or flu-like illness, whereas a number of FM cases are triggered by minor injury or trauma. CFS is characterized biochemically by elevated levels of RNaseL (an anti-viral enzyme), whereas FM is unique in having excess Substance P (which triggers pain in nerves) in the bodily fluids. Profound exertional fatigue, post-exertional malaise, deep myalgias, sleep disruption, cognitive dysfunction, and autonomic abnormalities are common to both. FM tends to be a more persistent ailment, whereas studies have shown more spontaneous improvement in PWCs (Persons with CFS). Persons with “pure FM” (that is, minimal cognitive dysfunction) tend to improve with low level, slowly progressive exercise, whereas persons with CFS are more likely to flare or relapse with even minimal activity.

    Paul Cheney and I always looked at the study of CFS/FM as if it were a gigantic tapestry. If we could see the face, we thought, the whole picture would become clear, but only the base of the tapestry was available to us. As a result, we pictured ourselves finding “a loose string” and following it along the backing of the tapestry until it either ended or led to something interesting. Over the past 18 years, I have followed an awful lot of “loose strings,” many of which led nowhere. However, some led us to marvelous things, like Ampligen, RNaseL, autonomic dysfunction, exercise regimens, stimulant medications, supplements, and pharmacological treatments. Many of our pilot studies, such as low dose cortisol therapy and IV gamma globulin, have been expanded by the NIH and private researchers. Nevertheless, research is hampered by the lack of a homogeneous population to study, relatively few funds, and the perception that CFS and FM are “not real diseases.”

    I used to show a slide portraying CFS research in 1987. It was a turtle riding an exercycle – he was going nowhere, slowly! In 1992, I revised the slide to show our progress. Now there were several turtles riding exercycles! But at least there were others with an interest. These great researchers have ploughed along despite lack of support and often ridicule from their fellow scientists, but we have stuck together and are now seeing many fruits from these labors. What is most exciting to me is that more and more scientists are recognizing how much research could be accomplished in these areas, and it is now almost impossible to keep up with all of the studies being performed around the world! As science demonstrates more and more biophysiological explanations for CFS and FM, the old school of skeptics and the psychologically oriented are finding their ranks growing thinner and thinner.
    ImmuneSupport.com: What are the most common factors for these illnesses – why do you think so many CFS patients also have FM, and vice-versa?

    Dr. Lapp: The leading explanation for CFS/FM is that an illness or injury triggers a physiological change in susceptible individuals. This change is clearly persistent or even permanent. Why do I specify “susceptible individuals”? Because there are many situations were a whole family is exposed to the same illness, or several people are involved in the same wreck, but only one has symptoms that persist and go on to behave like CFS or FM. The questions are, what is the change that takes place and who is susceptible. I personally feel that genetics explains the susceptibility. Dr. Klimas has shown that PWCs frequently have several HLA types (i.e., genotypes) in common, while Dr. Buchwald’s twin study is suggesting that many twins have common physiological abnormalities, whereas only one may have been exposed to the “trigger” that causes CFS or FM.

    At the current time, leading contenders for “the change” include persistence of RNaseL, discreet immune changes, abnormalities in the central nervous system (perhaps low blood flow) or infection by persisting or intracellular organisms. Unfortunately, none of these predictions so far can explain all of the symptoms that we find in CFS/FM, so it is possible that CFS/FM is multifactorial or that the real culprit is unidentified yet.

    Because we do not have an identifiable cause for CFS, I am hesitant to change the name of this illness unless the new name addresses symptoms and not pathophysiology. The descriptions “myalgic encephalopathy” (meaning muscle soreness and neurocognitive problems) and “fibromyalgia” (literally tendon-muscle pain), for example, describe unchanging symptoms of these disorders. Thus, when the pathophysiology of either is found, it will be unnecessary to change their descriptors.

    I am confident that there is a common biophysiological thread between CFS and FM, but also with other disorders like Gulf War Syndrome, Multiple Chemical Sensitivities, and the “shadow syndromes” like Temperomandibular Dysfunction, mitral valve prolapse, Irritable Bowel Syndrome, and Overactive Bladder that are closely associated with CFS/ FM. At this time, these could all be satisfactorily explained by changes in the Central Nervous System, which I suspect holds the key to CFS/FM.

    ImmuneSupport.com: Do you have a standardized treatment protocol for your CFS/FM patients?

    Dr. Lapp: Yes – it is the “Stepwise Approach,” and it is available at: http://www.immunesupport.com/library/showarticle.cfm?id=3714
    ImmuneSupport.com: What are your recommendations for the following important issues for CFS/FM patients:
    Dr. Lapp:
    • Sleep (unrestful sleep; insomnia): Start with over-the-counter products like melatonin, valerian, Tylenol PM; pharmacologically, the best combo is clonazepam 0.5-1mg (to initiate sleep) and trazadone 25-50mg (to maintain sleep); otherwise, Ambien and the benzodiazepines (Restoril, ProSom, Halcion) may be helpful but patients tend to develop tolerance over time.

    • Pain: Minimal response to PUFAs (poly unsaturated fatty acids, like flaxseed, evening primrose oil and fish oil); then NSAIDs like Advil or Aleve; then Ultram; then narcotics. When narcotics are used, long acting preparations (OxyContin, MS Contin, Kadian, etc.) are recommended in order to provide long lasting, constant relief. Ultram is preferred because of its low addiction potential, good efficacy compared to codeine, and its secondary benefit of raising serotonin levels.

    • Low energy (combating fatigue): Start with high dose (injectible) B12 and NADH. Next step, consider Wellbutrin (a dopamine agonist) or a non-sedating Selective Serotonin Reuptake Inhibitor (SSRI, like Prozac, Zoloft, Celexa, Effexor). But the best therapy is to use low doses of CNS stimulants like methylphenidate (Ritalin), dexamphetamine (Dexedrine or Adderall), and modafinil (Provigil). The latter has an excellent safety profile, minimal effect on the cardiovascular system, and little abuse or habituation potential. Provigil not only improves fatigue (alertness), but also somnolence, mental clarity, attention deficits, and depression.

    • Depression: Consider Wellbutrin (a dopamine agonist) or a non-sedating Selective Serotonin Reuptake Inhibitor (SSRI, like Prozac, Zoloft, Celexa, Effexor). When there are sleep problems as well, consider Paxil, Serzone, Desyrel, and the tri-cyclic antidepressants (TCAs) like doxepin and amitriptyline. The TCAs are likely to stimulate appetite and weight gain. When there is a significant sleep problem plus weight loss, my first choice in Remeron. Remember to use LOW doses of antidepressants and any other sedative medication when treating PWCs.

    • Brain fog (inability to concentrate, memory problems, etc.): Same as fatigue, above. Small studies have shown limited improvement with naloxone, Eldepryl, and Reminyl, but these drugs are very expensive and not likely to be helpful.

    • Diet (foods to eliminate, excitotoxins, etc.): There is very little study of this aspect, but empirically my patients do best on a low fat diet with lots of fresh fruits and vegetables, complex carbs (like rice and potato), and light meats (chicken, turkey, scaly fishes). We have also found that PWCs do not tolerate several items: Sugar, Caffeine, Alcohol, Tobacco, and Excitotoxins like MSG and aspartame (Nutrasweet, Equal). These are remembered by the mnemonic SCATE (pardon the spelling!). Many patients with loose stools may find that reducing dairy and gluten (wheat, barley, oats and rye) intake may help.

    • Supplementation (how to address any deficiencies): The literature confirms several deficiencies in CFS/FM, including intracellular magnesium and B12, whole body potassium, intracellular ATP, glutathione, taurine, serine, and the short-chain fatty acids such as valine, leucine, and isoleucine. While patients may not feel any better by supplementing these, health can at least be optimized. I frequently recommend supplementation with a multivitamin, magnesium, potassium, NADH (for ATP), glutathione, and an amino acid capsule.

    ImmuneSupport.com: What is your recommendation regarding exercise for FM and CFS patients?

    Dr. Lapp: I recommend that patients do stretches, Yoga, or Tai Chi daily. I strongly believe that this stretches the tender, contracted muscles of FM, maintains flexibility, and minimizes tendonitis and bursitis that are so common in FM. Using 1-2# weights can maintain biceps, triceps, and deltoids. I strongly encourage low level interval aerobic activity (that is, repetitions consisting of 3-5 minutes of exertion followed by 5 minutes of rest). Even the sickest patients can tolerate this low level of activity without triggering a flare. Over time the exercise period may be increased while the 5 minute rest period is maintained.

    ImmuneSupport.com: In your experience, what have been the most effective treatments for your CFS/FM patients?

    Dr. Lapp: I can never emphasize enough that taking periodic rest breaks, limiting activities, and maintaining low level aerobic activities is the very most important treatment for both CFS and FM. Unfortunately, many sufferers are unwilling to accept these drastic lifestyle changes. There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFS or FM. The next most important step is to minimize stress, optimize your support systems, and to maintain a positive attitude despite adversity. I have never seen a study that proves these points, but I can assure you from experience that pushing and crashing, denial, depression, and a negative attitude are all formulas for disaster, and I have never seen a patient who practiced them and yet recovered. Drugs, supplements, and alternative therapies are only supportive and symptomatic treatments that make the path toward recovery more bearable. But they do make it more bearable for most.
    For patients, CFS and FM are “high maintenance disorders.” I mean that sufferers spend most of their day taking care of themselves, and there is very little left over for family or friends. Nevertheless, it is absolutely necessary for sanity and a reasonable quality of life that sufferers do something fun – something that they want to do – each day. Especially in the early stages of CFS and FM I believe it is very difficult for sufferers to work full time and/or maintain a household in addition to self care. Accordingly, I am a big proponent of reduced work load or even total disability, as long as the patient uses this time for self improvement.

    ImmuneSupport.com: Are you currently involved in any research studies?

    Dr. Lapp: Yes. We continue to study the beneficial effects of Ampligen™, an anti-viral immune modulator that has provided significant improvement for a majority of patients, in my experience. It is not a cure, however. We recently completed a national, multicenter study of modafinil (Provigil). We continue to compile demographic data on our patients, and studying autonomic dysfunction. We are exploring the use of an inexpensive Actimeter (or pedometer) to measure improvement in our patients.
    ImmuneSupport.com: What do you think are the most promising recent developments in CFS and FM research?
    Dr. Lapp: In my opinion, the largest share of clinical research is being supported by private groups such as The CFIDS Association of America, the American Fibromyalgia Syndrome Association, and Pro Health. It is extremely frustrating to me that the NIH/CDC has allocated so little money for research of CFS and FM, while spending many times more on AIDS, RA, MS, and other illnesses that are less prevalent than CFS/FM and even less disabling!
    Many people ask why I do not do more research. The answer is that my day is already filled with taking care persons with CFS and FM. Furthermore, patients are looking for treatment possibilities, not demographics and data, which have been the mainstay of research over the past decade. So I focus on office-based clinical studies and treatment. One of my mentors, Dr. F. Mason Sones, was frequently criticized for the paucity of his books and peer reviewed articles. Yet Sones was the first man to catheterize the human heart; and he developed numerous tools, catheters, and procedures for the diagnosis and today’s incredible treatments of heart disease. He too felt more obliged to the patient than to scientific publication, and we are all better off for it.

    ImmuneSupport.com: What do you think the future looks like for CFS and FM patients? Are we moving forward in dealing with these diseases – as patients, practitioners, and as a society?

    Dr. Lapp: I am truly hopeful that CFS and FM will achieve more and more legitimacy as we learn more about these medical – as opposed to psychological – disorders. Even now, we are bringing more researchers into the field, as they see a wide open opportunity for exploration.

    The Hunter-Hopkins Center is one of the very few centers in the world that specializes in the management of CFS, FM, and related disorders. Founded in 1996, the center currently follows over 2000 patients from almost 50 states and over 14 foreign countries.
  3. deliarose

    deliarose New Member

    spent over $1,500 .. including travel costs. Told me to up my sleep meds, use 2 instead of 1, add B12 and maybe CoQ10.

    didn't help much. I consider it a waste of time and money.

    He's big on "living within the envelope".

    I don't think his treatment gets at the root causes. I am making great progress and hoep to be back to work this year (currently freelancing).

    That's down to transfer factor and the methylation protocol. (lots of posts on both these subjects.. just use the search function.)

    Just my 2 cents.
    Do a search under Lapp for more info/feedback. Others have seen him.

    Delia
  4. kimberly236

    kimberly236 New Member

    Andy,
    Thanks for the article. I actually had read that--it has a lot of info. I was hoping to narrow the treatments down some, though. Can't try everything at once. His website has some info, but some of it seems outdated.

    Delia,
    I'm sorry you didn't have a good experience. Can I ask you: what sleeping meds did he tell you to try? I am having sleep issues, so that might help me.

    Anyone else with info, send it my way.

    Thanks again for your help.

    Kimberly
  5. deliarose

    deliarose New Member

    I was able to ditch my sleep meds after a month on the methylaton program and six on transfer factor.

    No sleep meds (except Xyrem) will give u stage 3 and 4 sleep, and that's the healing sleep we all need...

    FWIW.
  6. kimberly236

    kimberly236 New Member

    Hi. I'm going to see my doc tomorrow, so any additional info from other patients would be helpful.
    Wish me luck!