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 advice 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 rescription 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.
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 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 mmune 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