Introduction: Dr. Lapp was nominated outstanding man of the year by the Jaycees, outstanding doctor of the year in Raleigh, and he was elected Duke University’s clinical professor of the year in 1986. He is really one of our champions and has worked long and hard in the CFS arena and we are very grateful. He has written many articles and spoken to medical staffs, hospital staffs, and support groups all around the country. He is also co-chairman of the clinical affairs committee for the American Association for CFS and a medical advisor to the CFIDS Association of America. Most importantly, he treats CFS patients. So, he knows about us, understands us, and he really knows his stuff, which is great. He’s going to share some of that stuff that he knows with us today. We are very grateful. Won’t you welcome Dr. Charles Lapp.

Dr. Lapp: Thank you Mary and thank you everybody.

We have a lot to cover today because I know that’s what patients with CFIDS (Chronic Fatigue & Immune Deficiency Syndrome) want to know about and people with fibromyalgia. I consider them pretty much the same. There’s an awful lot to cover. I thought I would cram it in so you would get it all, but I try to make it easy by giving you an outline. We’ll follow pretty closely that outline, so it shouldn’t be too hard to follow.

This is the Hunter Hopkins Center in Charlotte (showing slide) where we work. This is home. We started about two years ago in August. We do what you might call a consultative type practice. We do all kinds of medical problems, but because of my interest, we see mostly CFS and fibromyalgia patients now, as you can imagine.

What I try to do, because there are so few people in the country who actually treat this condition almost exclusively, is I try to look at what everybody in the country is doing. I try to get the best of all of the programs and look at what's good and look at what's not so hot. I try to cull it down and then recommend it to our patients. We try to save the patient the trouble of trying to track down all this stuff. And, of course, patients aren't as well-suited for deciding what is appropriate and what's safe and what isn't safe. So we try to do that too. And that's the tact that I will try to take with you today.

I frequently show new patients this slide here. It's not a funny slide. It's a slide that I use for illustration. It's a picture of two boxers and the coach is saying to one of the boxers, "He's bigger than you, he's stronger than you, he's younger than you. It's time we talked strategy." I like to show that to new patients because so many times they come to me with the idea that they can wish this thing away, that they can meditate this thing away, that they can pray this thing away. You can’t. Believe me, you cannot.

There is no known cause and there is no known cure. All that we can do is talk strategy and learn how to deal with this thing because nature heals most of you over a long period of time, needless to say. But nature does heal most. With that in mind, let's talk a little strategy here.

THE STEPWISE APPROACH: In Charlotte, we talk about the steps to recovery. It's a stepwise approach to recovery.

The first step starts with education. Each patient watches a video, speaks with our nursing staff, and speaks with me so that they get educated as to what causes Chronic Fatigue Syndrome, the pathophysiology as we know it today and what causes a lot of the symptoms that they're having. It's really important to reassure someone who comes down with this illness that they do have a recognized disorder. This is a real thing. It's not in your head. It's not cancer. It's not fatal. Most are relieved just to hear that they are not dying and they're not crazy. So, that’s the first step, is education.

The second step we talk about is activity and exercise. Of course, the first thing we point out is that this is an exertional illness. The more you exert, the sicker you get. If you overexert then you end up sick for a couple or three days in bed. On the other hand, if you don't do anything and you just lay around in the bed, you get deconditioned, and the muscles hurt, and the joints hurt more. So you have to get a narrow road. The thing that we really stress is that you have to avoid strict bed rest. That just does not do it, but balance light activity with rest, using common sense as a guideline. We'll talk a little bit more about that later.

In fact we have developed a rehabilitation program. This is Mercy South Hospital. My office connects directly to the back of the hospital. We work with the physical therapy department here, as well as with SueAnne Sisto and Dr. Ben Natelson's group in New Jersey, and Peter Himel who is a great rheumatologist up in Rhode Island. We've been developing a physical therapy type of program that has been helpful to our patients. We now offer it to new patients. Let me tell you what it is about and maybe you can take advantage of it as well.

The first thing that we talk about is posture. What the physical therapists pointed out to us is that most of the patients, because of tightness of the chest muscles, have a tendency to slump forward and the head goes forward. What that does is tighten up the muscles in the neck and the upper shoulders, which makes things a little bit worse. That is where most of your tension is going to develop if you have significant fibromyalgia. It leads to the neucoral, or back of the neck, and temporal, which is the temple, headaches. It increases the tension in the neck and the shoulders.

And it causes the person to breathe apically. That is if you take a hand and put it on your chest and the other one on your belly, and you take a big breath, the PTs (physical therapists) pointed out to us that virtually all of our patients breathe from the chest. Well, why is that bad. It is bad because you can’t take a big breath. The rib cage doesn’t expand well enough to take a big breath. Secondly, when you breathe from the chest, you have to use the accessory muscles of the neck, so you have to take these little, tiny, baby breaths. It leads to shortness of breath, a tight feeling in the chest, an almost asthmatic feeling in the chest, and shortness of breath if you, say, walk up stairs and so forth. If you learn to keep your posture, you’ll do much better. And if you’ll learn to abdominal breathe, it will help so much better, too.

The second step is stretching exercises. These are very simple stretches. They could be just yoga or tai chi because basically what we are doing is tying breathing with stretching. But we do have specific ones that I will go through with you quickly.

The first is what we call cherry-picking where you put one hand as high as you can like you are pulling grapes or cherries off the ceiling and hold it for five or six seconds. And then the other hand.

The rest of them are pretty much neck exercises. It starts with neck flexion. Chin to chest, neck extension, hold it for five or six seconds with the shoulders still. Rotate to the left, rotate to the right. Then a little head rotation like head-rolling. Don’t go around and around. I tell all my patients that their head will unscrew and fall right on the ground. Really, it is bad for the cervical vertebrae if we do that, so we don’t do that.

The last thing, and probably the most important, is shoulder shrugs, where you do a sort of chicken-wing kind of thing. Then go back the other direction. What that does is tighten up the muscles in the neck and shoulders.

The diaphragmatic breathing that we talked about a little bit—it not only reduces the chest tightness, shortness of breath and muscles spasms, but is also a stress reducer.

And then there are the physical modalities that they go to. You can do some of these at home.

You may not realize that a cool to hot pack is much better than using a hot pack alone. In other words, you take some ice chips in a Ziploc bag and cover it with a towel. Especially in the neck and shoulders, it is wonderful. Put a cool pack on the neck and the shoulders until it is cool, cool, cool. Then take that off and change it with a hot, moist towel or a hot pack. Going from cool to hot causes much more blood flow. It feels a lot better and works a lot better than either cool or hot alone. Spray and stretch is the technique that we use when the muscle is particularly tight and short. We just use ice cold spray. You can use ice chips alone to ice down the muscle. Then we stretch the muscle out.

I’ve heard a lot of you tell me, even today, that massage has been very helpful with the muscle tenderness and with the aches and the pains. In particular, I would like to mention that there’s a type of massage called craniosacral therapy. It involves not only massage but a sort of a rolling motion that the therapist does. It stretches the muscles along the spine and right up into the neck. That really helps a lot with headache and back pain. It’s a great modality.

Acupuncture has been very helpful, particularly for pain. But you have to find a good operator. Not everybody can do a good job. I recommend that you find the very best acupuncturist that you can. Try five or six sessions. If that’s not helping, I would quit it.

Electrical units like TENS units and ultrasound units in the hands of a physical therapist can be helpful as well.

Hydrotherapy is something that Paul Cheney and I have been touting for years since we’ve had so many patients come to us and say they benefited from it. Basically, it is vertical flotation in a heated pool, is what we most recommend. The water has to be tepid, not too hot. We originally said one hour, three or four times weekly. We now know that 15-30 minutes is more like it, and two or three times weekly. Not many people have access to a heated pool at 85 degrees though. So we started experimenting and found that we got just about as much benefit from soaking in a tub at home. But of course, in a tub at home you can’t swim and you don’t move around much, so the temperature of the water has to be a little bit warmer so you don’t chill. At home, get a pool thermometer or aquarium thermometer and get the temperature up around 95 degrees.

Not only is chronic fatigue syndrome and fibromyalgia an exertional illness but it is also a postural illness. If you stand up too long, you’ll get sicker and when you lie down you feel better. I’m sure you’re all instinctively aware of that. It’s also a disorder of sensitivities. Not only chemical, fumes, and drug sensitivities, but temperature sensitivities. You all know the flushes that you get, and the goose bumps, and the chills, those crazy things. You are very sensitive to temperature as well. Particularly if you have fibromyalgia, if you get a cold chill, if you get really, really cold, the muscles will get stiff and sore and painful. You have a difficult time shaking that chill.

On the other hand, if you get into a hot tub or a really hot shower, you will come out feeling weak and pasty. Probably for two reasons. It probably lowers the blood pressure a little bit when the blood pressure is already low in CFS. It also up-regulates the immune system. It makes cydokines and cydokines are what make us all sick. So those are a couple of reasons for staying out of hot, hot showers. If you are going to take a hot shower or hot bath, do it, then turn the temperature down before you get out. Never leave the shower or tub while you are hot and steamy.

I wanted to point out with the hydrotherapy that it probably works for two reasons as best we can tell. The first reason is that you are cooling the body down. When the temperature of the water is 85-95 degrees , it is cooler than your body temperature, so you are cooling down the core. When you cool down the core, it cuts down on the cytokines as well, and those cause the flu-like symptoms.

The other thing is, as you can see (showing slide) when you stand in water, the water pressure is very high at the bottom where your toes are. It gets less and less and less until it becomes the same as the surface pressure at the top of the water. In essence, you have a squeezing movement with the high pressure at the bottom and the low pressure at the top that squeezes fluid out of the toes, the legs, the thighs, and the trunk. It squeezes it into the left chest, the thoracic duct. When you squeeze the water out like that, it enters the circulation through a part of the body called the thoracic duct so you essentially give yourself a slight transfusion. The benefit of hydrotherapy is twofold. Number one, you cool core temperature. Number two, you increase circulating blood volume.

The last step is low level interval exercise. You all know that if you overexert, it can make you sick. If it doesn’t bring on symptoms, it will bring on a relapse. We have been seeking ways to exercise so that you can still keep up your flexibility and muscle tone but not cause a relapse. There are basically two ways that we can do that, we have found. One is to limit the heart rate to about 60% of your maximum heart rate. For a 50 year old person, the heart rate would not exceed about 108-110. As long as you don’t do that, you probably won’t do a relapse. The problem is so many of our patients are so debilitated already that their heart rate is already 90 or 100 before they start exercising so they don’t get anywhere with that one. So, that didn’t works so well

What Natelson and his group have shown is that if you exercise at a low level, just what you are comfortable doing; it could be walking on a treadmill or using a stationary bike. You could be using weights if you wanted to, circuit training at the gymnasium, anything like that. But if you will do it for no more than four to eight minutes and then rest for four minutes, you can get back up and do four to eight minutes of exercise again and rest for four. Do that for three or four repetitions. Most people can do that. Even the sickest patients have been able to do that in his study and not have a relapse. I highly recommend low level interval exercise.

The next thing we talk about is nutrition. Basically, this is not too hard to understand. It is a good, prudent diet. Essentially, a lot of complex carbohydrates like rice, potatoes and pasta. A lot of fresh fruits and vegetables. Light meats—chicken, turkey, fish. What we really stay away from are the fried foods, the greasy foods, and the red meats. Anybody knows intuitively that if you go out to the Longhorn Steak House and have a big ole steak and potato, you are going to come home and feel (lethargic) anyway. It just takes your energy to do that.

The other thing we highly recommend is that you avoid five verboten foods. You can have them, but we encourage you to reduce your intake of them. Those are identified by the acronym SCANT--Sugar, Caffeine, Alcohol, Nutrasweet, Tobacco. Possibly dairy and wheat for those of you who have a lot of stomach problems like bloating and diarrhea. It is very common to patients with CFS. What I recommend is that you take five days and don’t have any dairy—milk, ice cream, and cheese. See if that has any effect. If that doesn’t help, try staying away from wheat (gluten)—bread, pasta, pizza. If that helps, there are some excellent books at the library to help you learn how to live on a low gluten diet.

The next step is vitamins and supplements. It sounds trite, but our experience over the years have shown that many patients have subtle deficiencies in many vitamins. I don’t feel strongly that you have to have very expensive vitamins or very fancy vitamins in any way, but a good, basic vitamin program to help get you back to normal. I won’t say for a minute that vitamins will make you feel any better because I don’t think they do. What we are trying to do is get your body in the best possible shape so that you are ready to recover.

We start with a plain multi-vitamin tablet such as Theragran-M, Centrum Silver, something that you get from the GNC store. It should be a therapeutic multi-vitamin and it should contain minerals because those are the important things. You probably know we’ve had excellent results with high doses of cobalamin, which is vitamin B12. Probably 80% of our patients feel better when they take high doses of vitamin B12. Although the patients feel better, the doctors go crazy because they are not used to doing this sort of thing. We have shown that many patients with CFS don’t absorb B12 very well into the cell. When your doctor measures your B12, he’s going to measure it in the blood. It will be normal in the blood but it is generally low in the cell. Only when you give high, high doses do you get the result. I think, after years of testing, which is very expensive, we have found the best thing to do is just give the B12 for a month or two and if you get a response, stick with it. 80% of people do better.

CoQ10 in high doses of 100-120 mg a day is helpful for about 50% of patients. Both of these give global improvement. Everything seems to get just a little bit better, maybe 10-15%, but we’ll take what we can get.

Minerals, we’ve mentioned before. Those people with a lot of aches and pains may benefit from the fatty acids like Omega3 (evening primrose oil, ) and Omega6 (fish oil). There’s flaxseed oil and borage oil which are combinations of both. What these do is interfere with the inflammatory pathways in the body, so it takes the edge off inflammatory pain like arthritis and muscle pain.

This cartoon sort of tells us where we are with therapeutics and CFS today. In the first frame the little fellow is saying, "The doctor said take one pill when I go to sleep tonight…" In the second frame he says, "and one if I wake up in the morning."

Wait a minute! Haha. That’s about where we stand these days, but there are some things that we can recommend. It’s not quite that bad.

When we talk about symptomatic therapy in CFS, we are talking about these four areas: Sleep management, central activation, headache control, and relief from the aches and pains. Those are probably the big four areas. Of those, the sleep is the most important.

In sleep management, one of the best things we have found is Klonopin and Doxepin, but you don’t have to start off with prescription medication. I really recommend that if you are not having too much of a problem, you might want to start with something simple like Valerian root, which is a medieval preparation that has been used since the earliest centuries of man. It still works fine. You may even want to try an over the counter preparation. We’ve had great success with Excedrin PM and Tylenol PM. A lot of people are talking about using melatonin, which is also an excellent therapy.

With melatonin there are a couple of things I would point out. We don’t know as much about it as we would like, although we know a lot. Needless to say, I don’t recommend it for children younger than the upper teens. Generally the dose is 3 mg if you are under the age of 50 because it is age dependent. 3-6 mg if you are over the age of 50. It’s taken at bedtime. If you are going to use melatonin, that is how you do it.

I like to couple melatonin with light therapy in the morning because melatonin really doesn’t knock most people out. It’s not a sleeping pill. What it does is increases your sleep efficiency so you sleep better and you are more likely to wake up feeling refreshed in the morning. The best way to benefit from melatonin is to take it at night. Then when you get up in the morning throw open the blinds and get all the light you can. Turn on the lights and get as much light as you can for the first three or four hours. That’s how it works best.

Melatonin is the body’s natural sleep inducer. For that reason, we use it and have the best success in those patients who have, what we call, phase shifted. As many of you know, you used to fall asleep at ten or eleven o’clock. Now that you have contracted CFIDS or FM, you don’t want to fall asleep until one or two in the morning. What that means is that your body clock has phase shifted. Melatonin is great for shifting back. For those people that stay awake all night and sleep all day, it’s a great drug for getting you back in the swing of things again.

If that doesn’t work, we go to prescriptives like Klonopin and Doxepin in very, very low doses. Just one Klonopin at .5 mg . 10 mg of Doxepin, which is about 1/15th of the normal dose of Doxepin. So, very, very small doses in CFS.

We have excellent luck with Trazodone, brand name Desyrel, at 50 mg nightly. The nice thing about Trazodone is it doesn’t cause the dry mouth and it doesn’t stimulate your appetite so people don’t tend to gain weight on it like they do on Doxepin. The other thing is that it works best in the early morning hours. It puts you into a deep stage three and four sleep. If you are one of those persons who fall asleep pretty readily, but then wakes up every hour, or wakes up wide awake and can’t go back to sleep , Trazodone may be the thing that you want to take because it works best for that sort of problem.

If those don’t work, then we turn to the typical hypnotics. You probably know them by heart: Ambien, Halcyon, Restoril, Dalmane, Doral, Prozon. There are probably a dozen of them that are available. Most of them are related to the Valium type drugs: Ativan, Xanax, most of them related to the Valium, so they have side-effects of their own, but if we need them, we use them for sleep.

Sleep is very important. If you don’t get a good night’s sleep, you are going to wake up cranky, irritable, and achy anyway. So, that is the first step.

The second step is what I refer to as central activation. We do this for two reasons. One is to increase energy. The second is to increase motivation. We do this generally by increasing serotonin. Virtually all studies of brain transmitters have shown that patients with FM and CFS have low levels of serotonin, and sometimes low levels of dopamine in the brain. If you can increase those, it increases your energy and motivation level, so we try to use SSRIs (Selective Serotonin Re-uptake Inhibitor) like Prozac. Prozac is the prototype drug. But now we have Zoloft, Paxil, Effexor, Luvox, and several other drugs that act like the SSRIs as well.

If serotonin is not the problem and the SSRIs don’t work, then we’ll frequently turn to a dopamine agonist, one that increases dopamine instead. Wellbutrin is the prototype for that one.

Headache control has always been a big problem. Most patients with CFIDS can recognize that the headache of CFIDS is different from a typical headache. It tends to be behind the eyes or in the frontal area. It may be bi-temporal or it tends to be in the back of the neck. It has a pressure-like or squeezing quality to it. On the other hand, some patients have, for the first time, the onset of migraine type symptoms. A migraine is typically one-sided and it has a throbbing quality to it. Those are the two types of headaches that we most typically see.

For the pressure type of headache there has been some good evidence that this is actually due to squeezing of the brain, that the brain is swelling. It is that pressure inside the brain that causes the pressure feeling in the headache. That is why we started using Diamox, which is a fluid pill, a diuretic. It selectively shrinks the brain. It shrinks the fluid out of the brain and takes the pressure off of the brain. It works very well in low doses of 125-500 mg, once or twice daily.

When that doesn’t do it, we can increase blood flow to the brain. When we do that it reduces swelling a little bit. We use calcium channel blockers like Norvasc. Sometimes we have to turn to analgesic sedatives like Fiorinal, Fioricet, Esgic, some of the typical headache medications.

When it is a vascular type of thing, the throbbing headache, usually on one side, with the blurred vision and the nausea, then the migraine drugs like Midrin and Imitrex work very well.

We now have DHEA which we can spray in the nose and in some selective patients we use lidocaine which we spray in the nose. So, there are all kinds of new things for headache control.

The myalgias and the arthritis, that is the muscle and the joint pains, nothing new here, we have to use the nonsteroidal drugs like Advil and Naprosyn. That is the old standard and it will probably stay that way for quite awhile. Occasionally, if the pains are not controlled by that, we may have to turn to some more prescriptive type of agents. In this case, it may be a narcotic. We have a new drug called Ultram that is available. It is a narcotic agonist. What that means is that it is not really a narcotic, it is safe to use, it is non-habituating for the most part. It happens to be a serotonin agonist also, so it helps with the serotonin part. That drug has worked out very well for some of our patients.

A new term that we have been using, a new buzz word in the field, is fibro-pain. It refers to that vague flu-like, sometimes burning or searing aching that you get in muscles with fibromyalgia. There are some newer techniques that we’ve used. I’m going to go through them quickly because they really are sort of investigational.

Magnesium sulfate injections were the very first. Just 2 cc of 50% magnesium sulfate once or twice a week was described by Cox and his group in the English journal called Lancet, in the late 1980’s. He showed that about 80% show some improvement with that simple treatment. It still works today. It's something that we can use. The problem with magnesium is that it burns like fire, so sometimes the treatment is worse than the disease itself.

More recently, we have been using the anti-convulsive drugs. There is a new drug called Neurontin that is very safe. It mixes with every known drug and has very few side effects. That has done great for bad headaches as well as for burning and searing or nerve type pain that we see in FM.

We also use some of the other anti-convulsive drugs like Tegretol, Depakote, and Mexitil. Your doctor will be familiar with these.

....

Oxytocin is a little bit more unusual. Oxytocin is an anterior pituitary hormone. In pregnant women oxytocin cause contractions of the uterus. After the baby is delivered, the oxytocin causes the milk to flow. In a male and in a non-pregnant female, oxytocin increases blood flow to the eye, to the brain, and to muscle. The end result of that is, in a non-pregnant individual it tends to make the skin feel warmer and the body feel warmer. You think more clearly and you see more clearly. It can be remarkable. I can give the patient a shot of oxytocin in the hip and five minutes later they will say, "I haven’t seen this clearly, I haven’t felt this well in months." It doesn’t work for everybody, but when it does, it is quite miraculous and can be a long term therapy.

There have been three papers recently in the European literature and one paper in the American literature on using IV lidocaine, which is Novocain. Instead of giving it at the tooth site or where the cut is, we give it intravenously. Anketamine(sp?), which is an anesthetic agent, both of these have been described as reducing severe fibro-pain. It’s one of those things that we use as a last resort, but again, I want you to know there are options. You don’t always have to suffer.

Does all of this work? It is a question that I get asked all the time. This is just a short study but I think it shows it pretty well. We looked at ten patients when I was with Paul Cheney at the Cheney Clinic. We picked five representative pictures here. What we did was look at the symptom score, how many symptoms each patient had. Then we put them through the step-wise approach that I have just gone through with you. So, simple supportive therapy, nothing specific, just simple supportive therapy. When we did that, we found out that 80% of the patients improved. There were two that did not and actually got worse with the step therapy. What we noticed was the patients who came to us the sickest were the ones who didn’t do well with the supportive therapy. The ones that got to us early with mild to moderate symptoms did better with the symptomatic therapy and the step-wise therapy that we’ve talked about. The point there is that the earlier you get some help and the quicker you get some help, probably the better you will do. It does work and the figure is that 85% of the people improved.

With all that in mind, let’s talk about some newer things here. Would you believe that there is a treatment currently available, that has withstood the test of peer review, that is available to every physician, and just about every physician knows about it. It is safe and easy to take and works in up to 50% of cases.

What I’m talking about is salt and water, volume expansion. I know you have all heard about the studies at Johns Hopkins. We’ve also been doing the same studies for three and half years and have published several papers on it. You may know that somewhere between 70 and 90% of patients with CFS and FM have low blood pressure and what we call neurally mediated hypotension. When a normal person stands up, when I’m sitting or lying and I stand up, gravity pulls blood down to my legs. My heart senses it and sends a signal to the brain that the blood pressure is dropping. The brain sends a signal back to the heart to beat faster, to beat stronger. That brings my blood pressure back up and I do fine. When patients with CFS stand up, the blood pressure goes down, the signal is picked up by the heart that the blood pressure is falling. There’s a false signal that goes to the brain. The signal goes to the brain but, for some reason, when the signal comes back, you release more adrenaline. Epinephrine is the technical term for it. That actually causes the blood pressure to drop and the heart rate to drop. You actually get worse and may faint dead away. About 50% faint dead away and about 50% just get sick as the dickens.

It is an easy problem to fix. What we have to do is raise the overall blood pressure. That will help. To do that, drink a lot of water, 64 oz, or eight glasses a day. Take extra salt, generally starting with 2-6 grams of salt a day. Two grams of salt is roughly a teaspoon of salt, so it is a lot of salt. If that doesn’t do it, then we add a hormone called fludrocortisone or Florinef that works only on the kidneys. Fludrocortisone will cause your body to retain more of the salt and the water, so it helps to build the blood pressure. That combination works in about 50% of the patients that we tried it with. Sometimes adding a beta blocker like Atenolol will help or another type of adrenergic blocker called Norpace will even make it work better. So that is an area that can be looked into, particularly if you have a history of feeling faint when you stand for a period of time. The question I usually ask is if you stand in church for prayer or to sing a song, do you find that you get weak and faintly, or when you stand in the shower. If the answer is yes to those, then there is a pretty good chance you have neurally mediated hypotension. At the least, you should add salt and water to your diet. Be careful about blood pressure though. If you have normal or high blood pressure, check it at least weekly to make sure you are not getting it too high.

The second area that we look at is repletion. We know that there are certain chemicals, hormones, and so forth that are low in patients with CFS. One of the most common is the magnesium. We talked about the magnesium sulfate injections. Magnesium itself tends to be low. When it is, it tends to make muscle pain worse. Many of you may want to add some magnesium malate or magnesium glycinate to what you are taking already just to build up the magnesium level a little bit, presuming that you have normal kidneys. If you take magnesium and you have kidney failure, then that gets you into trouble. That’s no good. If you have normal kidneys and you are urinating on a regular basis, a little extra magnesium a day may help a little bit.

As you may know, in CFS, most patients have suppression of the hypothalamic pituitary gonadal adrenal axis (HPGA axis, for short). That means that the hypothalamus in the brain, which controls the other things, is suppressed. The pituitary, the gonads, the adrenals are all suppressed too. As a result of adrenal suppression, we tend to put out less cortisol. We tend to put out less of another adrenal hormone called DHEA. We’ve shown that if you try to replace the cortisol, it doesn’t work. It actually makes things worse. We don’t encourage taking extra cortisol. In San Francisco there were three nice papers about using DHEA. They showed, again, about 80% of the patients getting better. It wasn’t by much, only between 10 and 20% better. But if you felt globally better by 10-20%, that is a nice little gain to get. So that you will know, the dose of DHEA is 25-50 mg for women, 50-100 mg for men, daily. It is taken in the morning because that is when your adrenals normally put out the most of it.

The side effects of DHEA are related to the hormone itself. The hormone is converted to estrogen and a little bit of testosterone in women, then is converted to anabolic steroids. Anabolic steroids are what weight-lifters use to build muscles. It builds muscle, it builds bone, and it also increases blood flow. There are a number of areas that it helps in. The side effect comes from the testosterone. Whether you are male or female, if you take too much of the DHEA, the first thing you get is oily skin. The next thing is, if you take even more, you might even get some acne from it. Men technically have to worry because testosterone causes the prostrate to swell. If you have a little bit of urinary retention or you start hesitating a little bit, you might want to cut back on the DHEA.

Let’s talk about new, unconventional, and investigative therapies. These are therapies that have been shown to work, but they haven’t been shown strongly to work or there are some questions about their use.

The first is Kutapressin, which is an extract of pig liver. B12 comes from pig liver. When the B12 is extracted, there is a soupy extract that is leftover called Kutapressin. It looks like prune juice, but it works as an anti-viral and also as an immune modulator. It sounds like it was hand-made for people with CFS, so it was tried in the late 1980’s and found that 75-84% of patients improved with Kutapressin. It is a wonderful alternative. Virtually everyone that comes through my office is given an opportunity to try it or not. If it is so good, you might ask, then why isn’t everybody taking it. The problem is that it requires a shot in the hip every day for a month, then every other day for five months. Each shot costs $10. So it hurts, it’s expensive, and the chance of total recovery is about 30%. It is not bad odds but it is not the best. So some people think twice about the money and the discomfort.

The second is intravenous gamma globulin. Essentially, there have been two papers that say it is useless and three papers that say it is helpful. We still use it on our very sickest patients. If all else fails, if someone is really, really sick, hospital type sick, we will put them on IVGG. If a patient has multiple infections and might be helped by globulin anyway, then we will give them IVGG. It is very expensive, from $800-1000 a dose and is given monthly. It discourages a lot of people and is generally not covered by insurance.

For the last several years we have been using amphetamine type drugs in the treatment in CFS, but we have been doing it very quietly. The reason is that amphetamines are controlled drugs and they are uppers. We didn’t want people to say we were giving patients uppers just to give them false energy. We knew from studies done by Dr. Krestin in our office that most patients with CFS have slow brain waves. Even though you are wide awake, the brain waves are very slow. Even if you are wide awake, it looks like the brain is asleep. We found, serendipitously, in a lady who was taking amphetamines for weight loss that if she took one of her amphetamine tablets before she had her brain wave study that her brain waves sped up and she got back to normal. She told us that when she takes the amphetamines she feels close to normal. That’s why I do it. We started trying more and more patients on amphetamines. We found that not only does it speed up the brain waves but helps them to think more clearly and it does give energy.

I have been on a speaking tour recently. One of the people that has been traveling with me is Dr. Joe Cash from the Cleveland Clinic Foundation. He’s an immunologist that runs a CFS clinic up there. Their clinic is psychiatric based. They feel that there is a lot of psychiatric and psychological basis to CFS. But they, too, have discovered the use of Ritalin because their psychiatrist noticed that many patients with CFS have a lot of attention deficit type problems—forgetfulness, word reversal, using wrong words, letter reversals. They started using Ritalin to treat the attention deficit type of problems. They, too, got a lot of results in a positive fashion. Unbeknownst to either one of us, we were using Ritalin sort of on the side. I was glad to see that they are now going around the country and touting it. They are actually saying that it is their very best treatment right now. Just so that you will know, we’ve had the best success with Ritalin, which is the drug typically used to treat children with Attention Deficit Disorder. Number one, it is readily accessible. Number two, it is very safe. Number three, we’ve never had anybody become habituated to it. Number four, it comes in a wide variety of doses. We can use very small doses. We usually use about a third of the dose used to treat ADD.

Phentermine,or Ionamin, or Fastin , these are the so-called fat drugs that take away your appetite, but we’ve also had great success with them for two reasons. One, again, they are not addictive. We’ve never had anybody become addicted to Ionamin, which is the drug we usually use. They are long acting. Instead of taking them two or three times a day, you can take it once in the morning and it works all day. We’ve had some success, where the others have failed, with dextroamphetamine and an amphetamine like drug called Cylert. I’ll just mention those quickly.

Getting on to the long term antibiotic therapy. Many patients have told us, and maybe you have experienced it too, that you took Erythromycin or you took Cipro, or Doxycycline and felt better. The CFIDS symptoms felt better while you were taking the antibiotic and they got worse when you quit. We have noticed this for years. In fact, Dave Bell, when he was investigating the Rochester outbreak in 1984 and 1985, thought it was an outbreak of Lyme Disease and treated everybody with Doxycycline. And reported, not in a medical journal, but in a lay journal, that many of his patients got better with Doxycycline alone.

We never understood why, but recently reports have been coming out, and from this area as well, that there is a high incidence of mycoplasma incognitos in patients with CFS, as well as Gulf War victims. There is a high level of chlamydia in patients with CFS, as well. Both of these organisms, interestingly, respond to Doxycycline, erythromycin, and Ciprofloxacin This is an area that we are looking into and may become an area of therapy in the near future.

The last one I want to mention is the Ampligen. I don’t know how many of you are aware of it, but Ampligen is a double-stranded RNA. It is essentially a polymer of inosine and cytosine. It is a drug that has been around for almost thirty years in the veterinary industry. The problem was when you gave double-stranded RNA to humans, they got incredibly sick. A scientist by the name of William Carter learned that if he put a molecule of uridine every few molecules, it would take away the toxicity of double-stranded RNA and could be given to human beings. It was first tested in AIDS in the 1980’s and was very successful for AIDS. Then it was shelved because the company that bought it, DuPont, didn’t think it was successful enough. They shelved the drug and it lay on the shelf until a few years ago when a patient who was virtually dying of CFS talked Dr. Carter into letting her try it and she recovered totally from CFS. Since then, over 130 patients with CFS have been treated with Ampligen. Over 40,000 doses of the drug have been given world-wide. 50% of the patients have recovered, have gone from bedridden back to work. 80% have improved globally. It is a drug that works marvelously. The problem was that the company was going through FDA approval. There are three steps to FDA approval. In the second step, they ran into financial difficulties and they had to shelve the drug again.

Actually, that is the reason I went to Charlotte five years ago to start practice. I went to Charlotte to treat the patients with Ampligen, take care of patients with Ampligen, hoping that someday we would bring Ampligen back to the Raleigh area. But then the company no longer made the drug and I got so interested in CFIDS that I stayed and continued doing the work that I was doing.

I’m glad to say that the company has reorganized now. They floated a stock issue and they are now a viable international company. They are treating patients in Belgium as we speak. The Canadian government has okayed Ampligen in Canada for selected patients up there, though no one has yet been treated. Two weeks ago, the FDA agreed to let me and one other doctor in the United States administer Ampligen. We are hoping to get started on some Ampligen trials some time next month, as a matter of fact. This, too, is very hopeful for patients with CFS. We are going to be really excited to get some studies under way, and some treatments under way with that.

The Ampligen, I think, is still a little bit unsteady. The FDA has not been totally approving of it. It always reminds me of this cartoon. The witch is saying to the frog, "This will amuse you. Just as I was about to turn you back into a prince my research grant ran out." That’s about what we face with the Ampligen on a daily basis. I don’t think it’s very amusing myself.

I want to end with just a couple of points. I won’t belabor the alternative therapies because I gave you a handout from an article that’s being published next month in The Journal for Chronic Fatigue Syndrome. But I know that patients are going to turn to alternative therapies. Many of you just don’t feel that Western medicine goes fast enough. You may be frustrated dealing with your medical doctors and so you look for alternatives. There are also those people who feel they just have to try something, they just can’t sit still, they’ve got to try something else. I know that people are going to try alternative therapies. I can’t stop that.

I would like to tell you I have never seen an alternative therapy work really well. I have seen an occasional person, I hear a story here and there of someone who did well taking an alternative therapy. I think that’s wonderful. If I had severe CFS, I would be trying alternative therapies, too, I’m sure. But I don’t want you to think for a moment that it is going to be a cure-all because I don’t think it will. I don’t want you to spend a lot of money and a lot of time looking for the mithridate, that’s the medieval cure for all illnesses. There’s no such thing.

There are some things we can recommend. For example, acupuncture, massage, neuromuscular therapy, even chiropractic can be very helpful for symptom relief. Those are alternative therapies that I would highly recommend. We haven’t had very good luck with homeopathy, magnetic therapy, aroma therapy, that sort of thing, at all. I probably wouldn’t go and spend too much time or energy with that one.

There are some medications that have some merit. In these cases, we’ve at least had a number of patients do better on them and there is some scientific reason for recommending them. Every single one of these items on your first list there. You have them all in your handout. Every single one of these has a scientific reason for being recommended, so if you wanted to try them, I think it would be great. There are others that are sort of shaky, they probably are not risky, but there is no real reason to think that they would work. They, too, are on your list. What concerns me are these, the ones that are out there that have been proven to be unsafe and can be very, very dangerous, like peroxide infusions, Chelation, the Chinese herbs. So many of the Chinese herbs will make you feel better, like Ephedra, Ma huang, and Gotu. They are all caffeine derivatives.

I should make a point here that I failed to make earlier. Sugar and caffeine will make you feel better. They will give you a boost, but it’s a false energy because as soon as they’re gone you crash. What you find yourself doing is overextending what you normally should be doing, then you end up crashing afterwards. The Ritalin, the amphetamines, on the other hand, are speeding up the brain. They do not give false energy. What they are doing is taken a sleeping brain and waking it up. It gives you your old energy back. There’s a difference in those two. That’s why this one can be dangerous.

There have been several reports of death from mushroom and fungus tea. I wouldn’t go near it. The same thing with germanium. Caffeine is false energy. There have been several reported deaths with enemas as well. These are exotic enemas, too. I just wanted to point those out to you. Please be careful with those.

This is an area I’m going to touch on because I think too many people don’t touch on them. There are what I call perpetuating factors. If you don’t deal with these issues, I’ve found it very hard to get a patient to recover. I can tell you categorically I have never had a patient with severe depression recover from this illness. If there is depression, I wouldn’t say for a minute that it causes CFS, but I will tell you that it is important that it must be treated.

Hormonal issues are real important, too. Because the gonadal axis is affected by the hypothalamus, the gonads, the ovaries in women and the testes in men, tend to be suppressed. Hormones are low, libido is low. These should be tested. I recommend that women get a DHEA level and the men get a testosterone level. If these levels are low, by golly, treat it. You’ll feel better.

We manage allergies. Allergies take your energy. This is a great pollen season. The allergy doctors are loving this year because of all the rain and all the nice weather that we’ve had. If you have allergies and asthma, by all means, go see somebody. Identify what it is you’re allergic to and either avoid it or take allergy shots for it.

Treat yeast infections aggressively. Yeast infections don’t cause CFS, but if you have a lot of yeast infections, mouth infections, vaginal infections, things under the arms or in the crotch, when you have those infections they drag your energy down and they will make you feel worse. They need to be treated aggressively. I don’t know if I pointed it out in your booklet or not but just taking topicals that you get over the counter, creams and lotions that you get over the counter, won’t do it. Patients with CFS are susceptible to virus infections and they’re susceptible to yeast infections. They have trouble fighting off both. If you have yeast infections, get your doctor to provide the oral medications, like Diflucan or Nizoral. It’s the only way you are going to get it under control.

Avoidance of chemicals, odors, fumes. Those of you have sensitivities to these things, there is no treatment for chemical sensitivities. Avoidance is the only thing that you can do.

Lastly, address the stressors. If there are family problems, if there is fighting at home and anger at home, there are financial pressures, disability issues that are hanging over you, get them straightened out the best you can or seek a counselor so that you can at least talk about it because you are wasting energy on things like that. You need to get those handled.

Let me talk about preventive care. We’ve talked about hot baths and sunbathing already. Heat will wear you down. It doesn’t mean you can’t go out in the sun, but you don’t want to bake. You’ll shrivel up like a shrimp anyway. But you can walk in the sun and enjoy sunlight as long as you don’t get overheated.

I’m asked every year, "Should I take flu vaccine in the fall?" My answer is that it may prevent a virus, but to tell you the truth, most patients with CFS, their immune systems are so up-regulated, they are so turned on, that any virus that gets in the system usually gets gobbled up anyway. You really don’t have to worry much about viruses. Most of you can tell me that since you became ill, you’ve never had a flu, have you. There are probably 10-15% of you that get everything that comes along, but the majority don’t.

There are some negatives against taking flu vaccines. One, we did studies at Duke many years ago in patients with CFS, giving the immunizations of flu vaccine and pneumococcal vaccine in particular. What we found is that many of our patients don’t convert. That is, they get the shot but the immune system doesn’t respond to it. Even though they get the shot, it doesn’t do any good. The second thing is, many patients relapsed when they got the flu shot. They came to me and said, "Doc, I got the flu shot, and sure enough, I got the flu." If that’s the case, I would not take it because what’s happening is, you are getting all of the adverse effects and probably very few, if any, of the advantages. If you want to take a flu vaccine fine if you have tolerated it before. If you have not, I would stay away from it.

Many of our patients have had long periods of time where they’ve been inactive. For that reason, they have developed mild cases of osteoporosis. I am encouraging many, many of our patients, especially if there is osteoporosis in the family, or especially if you have some of the classical risk factors of osteoporosis—very thin, blonde hair, blue eyes, fair skin—I recommend you take a DEXA scan , a duel electron assessment (something like that) to see how dense your bones are and to see if there is any evidence of osteoporosis.

Lastly, an annual examination and laboratory testing. Number one, it is important for you to document from year to year how you are doing physically, as well as how you are doing from a functional standpoint, what you can do around the house, what kind of activity you have, what kind of exercise you’re doing. It is really important to document progression and regression, to review the medications because many of you end up going to multiple physicians. You ought to have one doctor that checks all those medications and makes sure you don’t have any interactions going on there. Cancer checks, there is no higher incidence of cancer in patients with CFS, but why take a chance. Let’s check routinely.

We do see, over the years, that our patients develop mild anemias. Low thyroid or hypothyroidism is very common. Sometimes we see things like lupus crop up. Every year we recommend that you take a panel of blood tests to make sure your kidneys, your liver, your cholesterol, everything is doing just fine. It’s for your own safety.

One thing that I didn’t put on the list, but I made a note to add here, is a dental checkup. You may not realize it, but dry eyes and dry mouth are very common accompaniment in CFS and FM. When the mouth stays dry, it gets very acidic. That acid just eats away at the teeth causing dental problems, cracking crowns. They are all at risk with CFS. Drink a lot of water. Don’t put a lot of sugar in the mouth, it’s going to affect it. See your dentist regularly. I also recommend using bicarbonate-based type toothpaste like Arm & Hammer toothpaste, Mentadent, because they tend to be more alkaline and they protect your teeth when you use those.

That brings me to the end. I just want to remind you if there is something you didn’t get, or if you didn’t get one of the handouts, we may be out of them. Feel free to drop us a line or call us. If you want to come down and see us, we would be delighted to see anybody that needs some extra help. There is the address. Just drop us a line and tell us what you need, what you want. We’ll try to get one of the girls to send it off to you right away.

Hunter Hopkins Center, 10724 Park Road, #105 Charlotte, NC 28210

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QUESTION AND ANSWER SESSION

What do we do with all these drug therapies? Do we start all this at one time?
We generally start with one or two at a time. We always start with the vitamins and the minerals. We always start with sleep because it is real important to get the sleep under control. Then we generally add the B12 and the coQ-10 all at once, with the first time. The next thing is that we add the SSRI, the Prozac, the Zoloft, or something like that to it. Then we treat the other symptoms, aches and pains, bad headaches, something like that. So we start with the basics and we do them a week or two apart. What is your insight on studies being done on markers?
Are you referring to Bob Suhadolnik’s markers? He’s at Temple University in Pennsylvania. Dr. Suhadolnik worked with us on the Ampligen studies. He was one of the scientists watching what happened to the anti-viral system when patients were treated with Ampligen. We found out that virtually every patient with CFS has an elevated anti-viral system. There are six anti-viral systems. The two that are most typically up are RNaseL and the PKR system. That is what Bob Suhadolnik showed and Paul Cheney and I contributed to those articles. The marker that came out most recently was that patients not only make RnaseL, but that the RnaseL is smaller than in normal people. Every normal person, if you get a viral infection, your RnaseL is going to go up to fight off the virus. What happens in CFS is that it stays up. There is a concern that it’s a toxic chemical and may be causing a lot of the symptoms that we see. Not only is it a marker, but it might be a cause for the disease. What’s unusual is not only is it persistently up in persons with CFS, but it’s only half the size of the normal RNaseL molecule. That’s the marker that we’re looking at.

In San Francisco, Bob presented a paper that showed (he had tested ten patients and ten controls) all ten of the patients had the marker. None of the ten controls did, which was great. Since then, (I just checked about two weeks ago with his lab) they’ve tested 800 patients with CFS and they are getting the same numbers. It’s almost 100%, so it’s looking really, really good. When I called two weeks ago, they were starting to look at non-healthy controls. They’re looking at sick controls—patients with depression, lupus, and rheumatoid arthritis—because they want to make sure sick people don’t have the abnormal molecules . If sick people don’t have the abnormal molecule, then we’ve got a test for CFS and we can tell all the psychiatrists to go home and shut the door.

Have there been any studies about ozone therapy?
It is right up on the top of the list with peroxide therapy. It is thought to be very dangerous.

Is a low white blood count typical of CFS?
Yes, that is reported in a large number of patients, not unusual at all.

Is CFS a contagious illness?
No, it’s not. It’s a shame, we all know of a recent book that came out, Osler’s Web, and Hillary Johnson categorically says that this is a contagious brain disease. She’s half right. Most of us think that it’s mostly a brain disease, but there is absolutely no evidence to say that it is contagious. People say that if it’s not contagious, then how come we had outbreaks in Raleigh, Lake Tahoe and Rochester. The answer is that it doesn’t need to be an infectious agent to get a number of people sick. It could have been something in the water. It could have been something in the air. It could have been a chemical in the area that everybody was exposed to at the same time. Just because a number of people get sick doesn’t make it infectious. There has been no evidence whatsoever that it is an infectious agent and I like to tell everybody because it is reassuring that we almost never get a spouse that catches CFS. It’s rare. When a husband and wife both have CFS, they almost always catch it at the same time, not one and then the other. No, I don’t think there is any sense to that and I don’t want you to worry about it. It’s a shame that Hillary went on Good Morning America and so many talk shows and misled so many Americans. It’s terrible.

What is the dose of B12 that is used?
The normal dose of B12 for treating pernicious anemia is 1000 micrograms (mcg) a month. We use 3000 mcg, two or three times a week. It’s a lot. I guess that would be 12 times the normal dose.

We have patients inject it themselves. In order to do that, we have a manufacturing pharmacist make a concentrate. What you could buy if you went to your downtown store or your local drugstore and bought it, you would get it at 1000 mcg in a CC. That would mean you would have to take 3 CC. That’s a big shot. That’s a horse needle. So we don’t do that. What we do is go to a manufacturing pharmacist that makes it in concentrations of 3000 and 5000 per CC, so all you use is a little, tiny insulin syringe to give it. There are four or five of them around the country. I can get you the names and numbers if you need them.

What type of B12 is used?
It’s cyanocobalamin. The other is hydroxy cobalamin. Cyanocobalamin is tolerated better and it’s more readily available, but you could use hydroxy cobalamin.

How long do you use it?
The answer is indefinitely. What I have found though, personally with B12 and coQ10 is that they wear out after awhile. After six months or a year, we ask our patients to stop it, just stop it cold, because you don’t get addicted to it. Just stop it cold and see if it is still working. If it’s not working, take a two or three month holiday from it and then try it again. Almost invariably people say it works great when they start it up again.

I would advise that with all medications, as a matter of fact, because the tendency is if something works, I call it the problem of Dumbo’s feather. Do you remember Dumbo in the Disney movie? He got a feather and Dumbo flew while he was holding this feather. From that point on, he thought that he could only fly if he had the feather in his trunk. You might remember that he crawled up to the top of the tower he was supposed to get on. One of his friends pulled the feather and pushed him. He found out that he could fly without the feather.This is the syndrome of Dumbo’s feather. You get a medication and you think it helped, so you are afraid to stop it. You take it for months and months and years and years. Don’t do that. Challenge it every once in a while. Stop it and see if it is still working. If your not convinced it’s still working, get rid of it.

How do you feel about Dr. Goldstein’s treatment of CFS?
A number of patients have gone out and seen Dr. Jay Goldstein who’s a family doctor and a neuropsychopharmacologist out in Anaheim Hills, California and a great guy. He’s probably done as much for CFS as any doctor in the country. Jay falls into that category that I mentioned when I first started speaking where we try to go to all the doctors who have great ideas and we look through their protocols and see what they recommend and see what works and see what doesn’t. That’s what we’ve done with Jay’s protocol. Jay is a wonderful guy. He has an unusual technique. He brings a patient into the office, he’ll put a drop on the tongue and a drop in the eye, an injection. He’ll just do one after the other. If you respond fine, if you don’t , then you get the next one. And he just goes down the line for about 30 treatments. They take a day or two to go through it all.

What we’ve done is, we’ve gone through all those treatments for you. We’ve picked out the ones that have had the best success. We keep all of them in mind. Some patients just don’t respond to anything. We get way down on the short list in those patients. He has a lot of good treatments and you saw most of them show up here as part of what we do too.

I’ve been sick for nine years and something that has helped more than anything is the breathing and the stretching. I use Atarax, 10 mg, for sleep. I want to know what you think of that.
Her comment is that she is using yoga and it has been helpful, so she is supporting what I told you earlier. So that is good. Thank you for confirming that it’s helpful. You also confirmed the sleep therapy because you are also using Atarax which is an antihistamine. Atarax is a prescription antihistamine. What I was talking about is over the counter antihistamines like Excedrin PM. Atarax is another good choice. It’s excellent. I didn’t touch on it, but many of our patients have a bladder condition called interstitial cystitis. It’s an irritated bladder that feels like you have to go all the time, so you go all the time during the day and all the time during the night. There’s pressure in the bladder area but the doctor can never find anything wrong. It comes to mind because 10-25 mg of Atarax at night works very well in controlling the symptoms of intercystial cystitis.

How do you know if you would be a good candidate for magnesium injections or for Kutapressin?
Do you have some profile that tells you that this patient might respond or do you just try it? The answer is no. We sort of go through a list, a step-wise list. After you have gone through all the basic therapies, after we’ve got the symptoms controlled, we say, "Would you like to try something that is a little bit investigational, but it may help your pain or it may help the CFS?" We offer it to the patient. Some choose it and some do not for whatever reasons. There’s no good profile of a patient who will or won’t respond.

Is your primary interest in patients and their treatment or in research?
We are a clinical practice. We treat patients. It so happens that we have 14 research projects going on at the same time, but it is all clinical research, getting medications that work, getting people better. We have a Ritalin study, a Cetirizine study, a study on physical exam, a study on pregnancy in patients. It’s all clinical work.

Is this a new disease?
Most of us who have reviewed the history of CFS feel that it’s a new disease. There is a long history, even as far back as 2000 BC. Hammurabi had (these columns) at Babylon. He mentioned people that had chronic fatiguing illnesses. But when you actually go back and look at the records of these people, they were really quite different than the CFS that we know today. Most of them were very serious. Some of them were fatal. Those that weren’t fatal were very neurological. There was a lot of paralysis and seizures and that sort of thing, the type of sickness that we just don’t see today. The majority of us today feel there may have been something going on in the past, but CFS is really a new illness Most of us sort of put it at about 1983 when all of the epidemics started. Tahoe, Rochester, and Raleigh were all in 1983-84 time span.

Does it occur in pockets since you hear about these epidemics from time to time?
No one has studied that. I don’t have a feeling for it either. I think that CFS is everywhere because when I travel to Europe or Asia people come up to me. Japan is the only country that actually has a ministry devoted to CFS. They have so much CFS in Japan that they have a ministry. You just don’t hear about it here. In Canada they have a department that is devoted to CFS. It’s worldwide, we know that. It affects all races. It affects all socio-economic groups. I do see pockets, but I think those pockets are, like the Nashville area, where you have a strong support group. I think the pockets that we see are just more vocal.

What do you do for jumping legs?
Jumping legs is technically known as myoclonus. It is actually a form of seizure disorder, a very minor seizure disorder that is very common in CFS. Not only does it occur at night but is most common when you are just falling asleep at night, but it may occur during the day. I have a lot of patients that will just jump and jerk like that during the day. I’ve actually had patients that bite their tongue because the tongue will jerk like that and they’ll bite the tongue frequently. The answer to your question is that it’s a minor seizure disorder. What we have found that works best is Klonopin. That is why I recommend Klonopin and Doxepin as the first prescriptive choice for patients with CFS. The Klonopin will knock that out right away. The other thing that you may not realize is that CFIDS patients and FM patients toss and turn a lot at night. In fact, many a husband has told me that it’s like sleeping with a tornado. The Klonopin will help that also, that restlessness, it just settles it right on down.

Which is worse, sugar or Nutrasweet?
It depends. You can have sugar and you can have Nutrasweet, but in small quantities. We did just a brief study at one time. We found that about 25% of our patients complained that their fatigue got worse or their headaches got worse when they took Nutrasweet. If you feel sicker when you take Nutrasweet, I would just stay away from it. It’s just one of those things you need to avoid. The answer is do what you think is best for you. As long as it doesn’t seem to be making you sicker and you don’t use a lot of it. Don’t go out and buy a whole bag of Milky Ways and finish them off yourself. That won’t work.

What about the brain lesions that have been reported?
I think you are referring to the paper that was done by Diedra Buchwald, Dan Peterson, and Paul Cheney when they reviewed 200-some-odd patients, almost 300 patients from Lake Tahoe. They took MRI scans of those patients and X-rays of the brain. They gave them to a Harvard radiologist who didn’t know what the patients had and didn’t know what the diagnosis was. He saw little, tiny white spots, what we call T2-weighted, unidentified bright objects in 79% of the patients at Lake Tahoe. That’s what I believe this lady is referring to. These are not specific to CFS. We see them in Lyme Disease, in Alzheimer’s, in normal older people. We see them in Sjogren’s Syndrome, for example, which is almost identical to CFS. So it’s not specific. When we have had an opportunity to get brain biopsies on patients, we have found that these little white spots are due to lymphocytic infiltration. They are not scars like they are in Parkinson’s Disease or Alzheimer’s. They are not permanent. They change over time. A lot of times I’ve seen an X-ray one year, then three years later we take it and it is either different or they’re gone. So, it does change. We also see those same spots in MS, by the way, but they are permanent in MS. They are not permanent in CFS, as best we can tell.

The gentleman is pointing out that he’s discussed diet with his physician who treats FM patients because occasionally he’ll get a diet that will make him feel better for a period of time and he was wondering about that.
My experience is the same as your doctor’s experience is. There are certainly deficiencies that our patients develop from time to time. They may be in minerals. They may be in vitamins. They may be in amino acids. For example, when patients are really low, I’ll suggest they go out to the GNC store and get an inexpensive protein powder, an amino acid powder called 95% protein. It’s $10 a can and it works great. It’s full of amino acids. Or go to Shaklee and get the Shaklee protein powder. Many people will take that and they’ll feel better for a month or two while they are taking it, but then they’ll seem to adapt to it and a new deficiency shows up somewhere. My experience has been that by using different minerals, vitamins, and amino acids, you may get a temporary remission, a flash remission. My experience is also that those things change and they fade off over time. If I would have a recommendation, it would be, don’t stick with any one vitamin or preparation over time. I would go two or three months with, say, one vitamin. Then I would go down to a health food store or GNC store and I would pick another brand because it’s going to have a little different stuff in there. Try that. Then go a couple or three months then try that. Maybe throw in some protein powder every once in awhile. See if that doesn’t help just a little bit to keep you in the best possible shape.

Is CRC (Candida Related Complex), sometimes known as yeast-related illness, the same as CFS and what do you do about it?
No, I don’t think there is any suggestion at all that candida causes CFS. Certainly there are a lot of symptoms that are alike, the fatigue and some of the allergies and so forth, they share in common. I will tell you, as I mentioned earlier, that yeast infections are very common in CFS and they are hard to treat. The reason for that is it’s an immune deficiency. The natural killer cells won’t fight off the yeast very well. When you have yeast infections, it tends to make you a little bit sicker and makes the symptoms worse, so we treat yeast aggressively. I think they would be two totally different things.

(Question inaudible)
Two questions. I’ll answer the first one quickly. We try to work as best we can with outside doctors. If they have questions and want to call us we try to answer those as best we can. We’ll be glad to help to the limits of time and energy we have, sure.

The second question was about photophobia.
Photophobia is very common. In fact, it is part of the CDC case definition, at least the 1988 case definition. It is so common that sensitivity to light is listed as one of the neurocognitive symptoms. I’ve never found anything that really helps, although, we recommend the obvious, sunglasses and avoiding bright light.

What experience have you had with pregnancy in CFIDS?
I have my opinion, but we haven’t finished the study on that yet. We are doing a retrospective study through the chart to see exactly how pregnancy affects CFS. Of course, many patients get pregnant during the time when they have CFS. Our experience has been that about two-thirds of them get better during the course of pregnancy. There may be a couple of reasons for that. One is, when you get pregnant, you increase your blood volume, your circulating volume. That treats the neurally mediated hypotension. You get rid of one problem there. The other is that you totally change around your hormonal system when you’re pregnant. It becomes Progestin-based. That seems to have an effect. The third is that your immune system is changed when you have pregnancy. There are three major changes that take place and may explain why pregnant women do better. I guess it’s fortunate that most patients do better with pregnancy because you have to stop virtually all of the medications during pregnancy.

For sleep medications you can use Benadryl or Atarax, something like that. If you want to take a chance, you can use Prozac. You are very limited and most gynecologists would encourage you not to do it.

One question that frequently comes up is, "If I get pregnant, should I breast-feed or bottle-feed?" There is no answer to that one either. We don’t think it is infectious, so technically you should not be able to pass on anything to an infant by breast-feeding. There are pros and cons. The pro for breast-feeding is that most women who breast-feed continue to have the same hormonal changes. As long as a patient is breast-feeding, they tend to benefit from the CFS. When the breast-feeding stops, that is when the CFS comes back. It usually comes back no worse than what it was.

....

Should you take DHEA if you are already on hormonal replacement therapy?
You can. It’s sort of like wearing a raincoat in the shower. The amount of DHEA is probably much less than you would get from taking, say, Premarin or Ogen or one of those estrogen replacement pills. The benefit from the DHEA is that you get the anabolic steroid and you get a little bit of testosterone as well. The answer to your question is you can take them simultaneously if you want. You may have to adjust the Premarin or the Ogen, or whatever agent, down a little bit because you will be getting a little bit of extra estrogen from the DHEA. You have to just play it by ear on that one.

(inaudible question)
I’m getting a lot of questions about the Charlotte office. I don’t mean to come here to promote the Charlotte office. Insurance is very variable with CFS whether you see your primary care physician or you see a specialist. The truth is, the insurance companies have a clause in there that if it’s an experimental disease or if it’s a disease that’s not well established that they don’t have to pay. And they choose to exercise that very frequently. The experience that we’ve had is that a third of the insurers pay completely, a third pay part of the bill, and a third pay nothing. There’s no way to tell who will pay what. We take Medicare, but we’ve gotten so swamped by Medicare patients that we’ve just had to stop. We’re not taking any new Medicare patients, if that helps.

....

Do you see a certain personality type that gets FM or CFS?
An interesting epidemiological question. Yes and no. We used to think that. I still sort of think that to some extent. I tend to see people who are more Type A. They’ve always been very active individuals. I used to state that we don’t see no slouches in this office and it’s true. I mean, we just don’t see a lot of Type B personalities. But now I’ve been treating CFS for 11 years and I have seen a lot of Type B personalities now too. They’re starting to show up. I think the reason they didn’t show up at first was because they just don’t care. It was the Type A’s that were seeking out the doctor. It’s the Type A that is on the Internet first. It’s the Type A that reads. I think that they just found out first.

The longer that I’m in this business the more I’m seeing a broader band. We never saw a black, we never saw a Hispanic, we never saw an Oriental. When you consider that Japan probably treats more CFS patients than any other country, why don’t we see any Orientals? Because I’m in suburban North Carolina, you know. When they looked in Los Angeles and when they looked in San Francisco, they found that there were all kinds of Hispanics and Orientals that had CFS. It just depends on where you are.

Is there any type of CFS patient that can donate our bodies for research?
Oh dear, I think you better double her life insurance, she’s talking about giving up her body already. First of all, I don’t want you talking about dying because we don’t expect that. We would love to have clinical material. We have not been able to identify anybody who knows how to handle that material. Nobody knows what to do with it. Nobody has any funding to store all these bodies that want to come to us. Right now, we really met Dave Bell and Paul Levine from the NIH and a couple of others. Joe Cash and I met last week to discuss this very question. We know that Dr. Gow from England will accept specimens, but it’s so hard to get a body across international lines. That won’t work out. Paul Levine said he would look into that and see if he couldn’t get a government agency to take responsibility for that. Kim Kenney was with us and I’m sure she’ll publish it in the CFIDS Chronicle when we identify a source like that.

It reminds me of two other things. One is that people ask me all the time, "Can I donate blood and can I donate organ parts?" Even though we don’t think it’s infectious, we don’t know what causes CFS and I’m not sure you’re doing anybody a favor by giving them your parts. So, keep them to yourself for awhile until we straighten this out.

And while I’m thinking about the CFIDS Chronicle, I always like to put in a plug for the CFIDS Association because they catch a lot of flak. They do a lot of representing patients with CFS. You know when your head is up above the crowd, you are bound to catch a tomato here and there. They do it all the time, but there is nobody who is doing work like the CFIDS Association. You can’t point to any other agencies that have done as much in Washington, that’s put out a newsletter like that, that’s trained so many physicians, that’s given two million dollars in research money. No one is doing work like the CFIDS Association of America. So let me put in a little plug. Send in your $20 or $25, whatever it is to become a member. Get the Chronicle. It’s a great way to keep up and it really does support research for all of us who are out there. They are the only people who are working for you full time.

When people recover, do they recover completely?
The answer is yes. When I define a recovery I mean that there has been no significant relapse for a year. I don’t recall that I’ve ever seen anybody recover by my definition who has ever gone back to have CFS. I call it a remission, but I really think it is a recovery.

When folks start to feel better, we’ve seen three types of recoveries. The very first patient that I treated was bedridden for 2½ years and within two weeks, this was a 16 year old, not only was she back to school, but she was riding her horse and she was working as a waitress on weekends too. In two weeks she totally recovered from 2½ years of being bedridden. So, I’ve seen it that fast. More typically, it’s slower. People start to get better and they get better and better. Finally over a year or so it is finally gone. That’s more typically the course. Occasionally we have the remitting, relapsing type where someone will have a period where they will be sick for a week and then for three weeks they’ll feel a little bit better. What you find in that type is that the bad period gets shorter and the good periods get longer. Then one day you wake up and say "It’s been a year since I had a relapse." And you don’t even realize it because it comes slow. The point is that there are different ways of recovering. When people recover and want to go back to work, what we always do is in three month increments. We’ve found that you can’t go any faster than three months. This is just trial and error over 11 years of practice. We send people back part-time, usually two or three hours for three months. We reassess if they are doing well and haven’t had a significant relapse, then we go a quantum level higher and send them back for maybe four or five hours of work. Then have them back in three months. If they haven’t been in bed for two or three days with severe illness, then we go another quantum level up and send them back maybe six hours. It usually takes a year for them to get back to work full time unless it’s a really rapid recovery.

How do you find a doctor in your area that treats CFS?
There is no good answer to that question. I will make two comments about that. The first thing is your support group is your best help. Speak to support group members. They know who’s good in town and who will not humiliate you and who will at least keep an open mind. The second comment that I would make is that I see CFS as so terribly complicated. It involves virtually every system of the body. It’s very complicated and incredibly time consuming. I don’t think I could ever see a patient in under 30 minutes in my office. As you know, the way medicine is going today, most doctors are forced to see a patient every five to seven minutes. You will not get the care that you want from any primary care physician today. I think what you need to do is get a primary care physician who is understanding, who won’t humiliate you, who will at least help you out with the colds and the flu and maybe adjust your medications. But I think that we have to get more treatment centers around the country where you can go. Just like a diabetic goes in once a year to see the endocrinologist or someone with lupus goes to see their dermatologist and neurologist once a year to get the plan for the following year. Then have the local doctor follow up on that and keep it going. I think that’s what it’s going to come to.

Is this a genetic disorder?
There is a lot of evidence to point to the fact that it is. Paul Levine has published a couple of papers from the NIH on families with CFS. He’s published on three families and two of those were mine. It’s been my experience over the years that it tends to run down a bloodline. So, all the girls on one side of the family may have it, or all the boys may have it, something like that. I have never been able to get the CDC to put it in writing. The CDC did a surveillance study for over four years, in four cities. They tried to determine what was the incidence of this. The director of that study once told me over dinner that about 10-15% of people who have CFIDS will have another member in the family who also has CFIDS. In other words, the chance of another family member having CFIDS is about one in ten. Your child will have a one in ten chance of coming down with CFIDS. If you are a betting person, those are not bad odds. It does seem to be genetic though. We’ve seen a number of genetic markers that come up time and again in patients with CFS. That’s work that Nancy Klimas is doing and is being financed by the CFIDS Association.

Do you lose weight on Ritalin?
Does it affect appetite? No, we generally use smaller doses than would be used for Attention Deficit Disorder. Besides, Ritalin, which is methylphenidate, does not have much of an anorectic quality to it. Ionamin, on the other hand, the other drug Phentermine is related to methylphenidate and it does affect appetite. It depends on the agent that you use whether it affects appetite or not.

In children, we know that you have to use higher doses of Ritalin to get an effect in most cases. When you get to the higher doses it does affect appetite somewhat. But it is not really a good anorectic agent, so I wouldn’t use it for weight loss. Thank you very much, we’ve run out of time