Note: Following is the transcript of a lecture that Dr. Charles Lapp, MD, delivered to ME/CFS and FM patients in Nashville, TN, in April 1997. Continuing research has doubtless produced added insights, but this detailed description of his "stepwise" approach to ME/CFS and FM management is a rich mine of lessons learned in years of patient care.
Dr. Lapp is one of the pioneer physicians who first brought ME/CFS to national attention. In additional to directing the Hunter-Hopkins Center for ME/CFS/FM treatment & research in Charlotte, NC, he is a board member of the International Association for CFS/ME and the American Fibromyalgia Syndrome Association, medical advisor to the CFIDS Association of America, and a member of the federal CFS Advisory Committee.
We have a lot to cover today because I know treatment is what patients with [ME/CFS] want to know about, and people with fibromyalgia.
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.
n 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.
n 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 lie 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.
Illnesses of Posture and Sensitivities
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 cytokines, and cytokines 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:
n 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.
n 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.
Benefit of Hydrotherapy
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.
n 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 work so well.
n 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. 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 meat, 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.
Foods to Avoid
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.
Vitamins and Supplements
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.
n We start with a plain multi-vitamin tablet. It should be a therapeutic multi-vitamin and it should contain minerals because those are the important things.
n 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.
n 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% to 15%, but we’ll take what we can get.
n Those people with a lot of aches and pains may benefit from the fatty acids like Omega-6 (evening primrose oil) and Omega-3 (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.
Symptomatic Therapy for Sleep, Central Activation, Headache, Aches & Pains
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.
n 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 increase 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 who 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.
n 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 Inhibitors) 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.
n 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.
n 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 Ultran 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 The 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?
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 good 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 who 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. 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 who has been traveling with me is Dr. Joe Cash from the Cleveland Clinic Foundation. He’s an immunologist who 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.
Long Term Antibiotic Therapy
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:
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.
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. 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 reatment 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.
Preventive Care and Testing
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 who 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.
n 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.
n You ought to have one doctor who checks all those medications and makes sure you don’t have any interactions going on there.
n Cancer checks, there is no higher incidence of cancer in patients with CFS, but why take a chance. Let’s check routinely.
n We do see, over the years, that our patients develop mild anemias. Low thyroid or hypothyroidism is very common.
n 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.
n 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.
Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.