Re: Chronic Fatigue and Fibro

[Guest guest]

Hi everyone!

I sent Dr. Leu this article that Rogene posted earlier to get his opinion. He agreed that it is definitely worth checking into if you have never been tested for mycoplasma. He is researching to find a good, reliable test. The test he used to use isn’t being done any more.

Kenda

>Chronic Fatigue Syndrome Radio Show

>Jan 4th, 1998

>Dr. G. Mazlen, Host

>with

>Dr. Garth Nicolson

>

>

>------------------------------------------------------------------------

>

>Dr. Mazlen

>We are going to have with us, today, Dr. Garth L. Nicolson. He's the Chief

>Scientific Officer of the Institute for Molecular Medicine in Huntington

>Beach, California and as well, he is the Professor of Internal Medicine at

>the University of Texas Medical School at Houston. He's going to be talking

>to us about something very important for the 90's, the new emerging

>infectious disease, which is mycoplasma infection. And we're going to go

>right now to Dr. Nicolson. Dr. Nicolson, welcome to our show today.

>

>Dr. Nicolson

>Well, it's a pleasure to be on.

>

>Dr. Mazlen

>We're going to let you start off and maybe define for our audience, what

>this organism, the mycoplasma is about.

>

>Dr. Nicolson

>The reason that this is important to patients with Chronic Fatigue Syndrome

>or Fibromyalgia Syndrome or Gulf War Illness is that we found that 50 - 60%

>of the patients that have these syndromes have infections, chronic

>infections that are the underlying cause of a lot of their morbidity or

>their illness and the evidence for that is that we can find these

>micro-organisms deep inside the white blood cells in the blood and they're

>systemic. They go to all the tissues of the body and all the organs of the

>body and they cause all these complex signs and symptoms that occur all

>over

>the body and we know them collectively as these names like Chronic Fatigue

>Syndrome or Fibromyalgia Syndrome, but the important thing is that once we

>can identify if these chronic infections are there, a patient can be

>treated. We have patients that have been sick with Chronic Fatigue Syndrome

>or Fibromyalgia Syndrome for decades and they have not really received an

>adequate diagnosis. Yes, we know they had the syndrome but we didn't know

>what the underlying cause of the syndrome was. Well, one of the underlying

>causes of the syndrome is, we feel, are these chronic infections and once

>they can be identified these patients can be treated. And we have patients

>that are now recovering after years of illness. They're getting their

>health

>back. It's a slow process of recovery but they are recovering. They are

>going back to work, they're going back to a normal life again. And I think

>that's the good news is for a large number of people. We can actually help

>them recover from this disease.

>

>Dr. Mazlen

>Well, that's very exciting news and we are delighted to have you say that

>here on this show. It offers hope to a lot of these people. What type of

>illnesses or syndromes are associated with mycoplasma infection?

>

>Dr. Nicolson

>Well, mycoplasma first are a very simple subclass of bacteria. They don't

>have a rigid cell wall like most bacteria and they have usually less

>genetic

>information inside them and because of that they have to grow associated

>with cells in the case the mycoplasma that invades, for example, mammals or

>us, and either they have to grow associated with the cells or inside the

>cells in our tissues. So they really don't do well outside the body.

>They're

>not viruses because they have the ability to self-replicate but they're

>very

>fastidious, that is, they require a lot of metabolites themselves. So these

>types of infections have to be associated very closely with cells or

>tissues

>and when they get in the body they can penetrate, many of them, into

>virtually any tissue or cell. Now there are about 50 different types of

>mycoplasma so we concentrate only on about 6 and these are the 6 that are

>known to cause human diseases and these 6 are very interesting, because in

>the case of a very specialized type of illness, like Gulf War Illness, we

>find principally one species of mycoplasma and you have to realize the Gulf

>War Illness started in 1991 and a lot of people came home. Now we have over

>a 100,000 veterans of Desert Storm that are sick and if you count their

>family members it's probably double that, so these diseases are contagious,

>although they're not wildly contagious, they can be passed at a very slow

>rate between members of the same family is the usual way it's passed.

>People

>that have close contact. It requires close contact to pass these types of

>illnesses because they're not very invasive in terms of infectivity. But

>once they're passed to another patient, that patient will slowly start to

>have the signs and symptoms that we see in Chronic Fatigue Syndrome,

>Fibromyalgia, Gulf War Illness. It often starts with a low grade fever or

>flu-like condition in the lungs, because they're airborne, that's how

>they're passed, and this doesn't resolve very easily. It sort of becomes

>chronic and so instead of completely resolving it goes into a chronic phase

>and then all the other signs and symptoms like joint pain, reduced

>mobility,

>chronic fatigue, vision problems, cognitive problems, muscle spasms and

>burning, then all these other different 20 to 40 different signs and

>symptoms, one by one, tend to come on very slowly. And in fact, if you look

>at Chronic Fatigue Syndrome or Fibromyalgia, most people that have had

>these

>illnesses have had them for years and they have a very slow onset so they

>have a long phase in which this chronic condition slowly becomes worse and

>worse and worse. Now, in some cases it resolves, but in most cases, most

>patients it does not resolve. And it is there and there is really no real

>effective treatment that will eliminate it completely. There are treatments

>that will shelf some of the signs and symptoms, but none that really

>eliminate all of the signs and symptoms, so what we have found is that if

>these chronic infections are the underlying reasons and there could be many

>reasons that people have these chronic illnesses, if they're chronic

>infections that are involved, once these are identified, then we can

>prescribe the correct antibiotics to treat them and it's a slow process but

>people can recover.

>

>Dr. Mazlen

>We're going to come back and talk about treatment in a little while. I want

>to mention that information with regard to your institute can be obtained

>through your website, www.immed.org.

>

>Dr. Nicolson, talk to us now a little bit about how treatable are these

>diseases. If you catch them early is it different then when you catch them

>late or are they all treatable more or less with the same effectiveness?

>

>Dr. Nicolson

>Well, you know these illnesses, these syndromes, they're very complex and

>they often have a number of underlying reasons for the illness. We've

>concentrated on illnesses that are caused by infections. These are chronic

>infections that can be identified in about 60% of Fibromyalgia patients,

>about 60% of Chronic Fatigue patients and 50% of Gulf War Illness patients.

>Once these are identified then they can be treated with a regimen with

>antibiotics, vitamins and nutritional support and some other important

>nutritional considerations that are involved in these treatments.

>

>Dr. Mazlen

>Does everybody respond to treatment?

>

>Dr. Nicolson

>So far, we've found that at least three quarters of the people that start

>this treatment have recovered. Not everybody recovers and we attribute that

>to the fact that a lot of people have multiple reasons for their chronic

>conditions. Some people have severe chemical exposures, for example, and

>those are not treated at all by the antibiotic regimen. Other people have

>viruses that are very important in the etiology of their illnesses and

>those

>aren't touched by the antibiotics, although recently, we found a

>combination

>of antivirals and the antibiotics. In fact, there are 2 or 3 physicians

>that

>are using this now in various parts of the country, in Toronto, for

>example,

>and in various locations, and these have proved to be very effective and

>that might go along with the idea that these diseases are multifocal.

>They're caused by a number of different insults on the body and viruses are

>one of the insults. These primitive mycoplasma are another insult.

>Chemicals

>are another insult. And so we kind of have to treat these in combination to

>really get the maximun affect.

>

>Dr. Mazlen

>Now, you had mentioned to me when we were talking on the telephone

>previously, at another time, that in the Gulf War Syndrome, that the

>mycoplasma might be genetically altered. Do you want to comment on that?

>

>Dr. Nicolson

>Well, this is quite different from what we found in the civilian

>populations

>of the US and Canada. We don't see any evidence for any genetic alteration

>of these micro-organisms but we did find in the Gulf War Illness patients

>that there were some unusual genes that were associated with the mycoplasma

>that we found deep inside the cells in these patients bodies. And one of

>those genes was the HIV-I envelope gene and this a gene that encodes a

>capsid or surface component of the HIV or AIDS and this is a component that

>the virus uses to bind to and enter cells and so we think that this gene

>may

>have been put into this primitive bacteria to increase its penetration in

>the cells. Now, this was the only gene we found from the HIV. We couldn't

>find any of the other genes, so it wasn't that the HIV virus entered the

>mycoplasma somehow. It appears as if a part of this gene or the whole gene,

>we don't think the whole gene but a part of it, may have been placed into

>the bacteria or the mycoplasma to increase its pathogenicity. That's really

>a theory at this point. It hasn't really been proven, but it's very

>suspicious that we find this in some of the Gulf War Illness patients who

>are extremely sick, some of them have actually died from their illness.

>

>Dr. Mazlen

>I just want to make it clear to our listening audience that this is not

>what

>you find in the Chronic Fatigue Syndrome or Fibromyalgia patients who are

>here in the United States that you're studying, is that correct?

>

>Dr. Nicolson

>That's absolutely correct. We have not seen that except in one exception,

>and that's in a group of prison guards and their family members in Texas

>that we were studying because they had Gulf War Illness before the Gulf

>War.

>Now unfortunately, there was some experimentation going on in this

>particular prison unit that we were studying and we think that we the Dept.

>of Defense may have been involved in some illegal testing and I don't want

>to go into that because it's very contentious at this point and it's being

>hotly denied by the government and you can imagine why.

>

>Dr. Mazlen

>OK, we won't go into it. We'll focus more on Chronic Fatigue Syndrome which

>is basically what our listening audience is composed of. Now you mentioned

>that 75% may recover but you also mentioned to me when we were talking

>privately that this organism is partially anerobic so for that reason,

>sometimes, when people go through air travel, let's say they're traveling

>to

>some destination, their disease may worsen. Can you explain that?

>

>Dr. Nicolson

>Well, we think that one of the problems that many patients that have

>Fibromyalgia or Chronic Fatigue Syndrome have is that when they travel by

>air they relapse very heavily, that is their signs and symptoms become

>worse. This is commonly found and it's not just so much the stress of

>traveling, we think there's another element involved and that's that when

>they travel they fly under conditions of reduced oxygen pressure, so the

>partial pressure of oxygen is actually reduced in the cabin of the aircraft

>flying at 20 - 30,000 feet. This is especially apparent in people who fly

>in

>helicopters so we have a lot of pilots that have contacted us, particularly

>helicopter pilots that become very sick after flying. And in some cases the

>people get temporary relief by going on hyperbaric oxygen, that is oxygen

>under pressure that increases the partial pressure of oxygen. All of this

>is

>consistent with what happens with a mycoplasma infection. These infections

>are what's known as borderline anerobes. That is, the micro-organism

>prefers

>low oxygen tension, so if you over exert, for example, and you starve your

>tissues for oxygen, that will actually stimulate the growth of these

>micro-organisms, or if you fly in an aircraft for a long period of time, a

>long flight, that can stimulate these, and so the signs and symptoms can

>become worse after such an event.

>

>Dr. Mazlen

>Now, it's important before we get through the show today which is obviously

>a half hour show, to talk briefly about testing patients for this. How do

>you test a patient if they want to find out if they have this? What are the

>options?

>

>Dr. Nicolson

>First, we have developed these tests over the last 5 or 6 years and they're

>very sensitive tests and there are only a few places that can conduct these

>tests. We use blood as the starting point. We analyze the white blood

>cells.

>We use two different types of extremely sensitive techniques. Both of them

>are molecular biologic techniques, one is called nucleoprotein gene

>tracking

>and the other is called forensic polymerase chain reaction. Now without

>going into any detail, both of these are based upon the genetic makeup of

>the micro-organism and they're extremely sensitive. In fact, we have a

>contract from the Dept. of Defense to train Dept. of Defense personnel.

>They'll be coming out to our institute in a couple of weeks to be trained

>on

>how to do these different tests. People can call our institute at

>714-903-2900 or go to our website which you gave and get informatiion on

>how

>to be tested. We're a non-profit institute so we accept a donation in lieu

>of paying for the test and once people give the donation, then we do their

>test. We obviously have to recover the cost of doing the test. We have

>thousands of people contacting us for information on how to get the tests

>run and so we provide that information, we send them a package of

>publications, for example, reports and how to sign up for the test, how to

>send the blood, information they can take to their physicians and so on.

>They send their blood, they usually get their results back in three or four

>weeks.

>

>Dr. Mazlen

>Well, that's exciting because a lot of times testing is not available when

>a

>new organism or a new disease is being looked into.

>

>And now we're going to wrap up this most exciting topic which we're going

>to

>have to continue again at a later date with Dr. Garth Nicolson. Dr.

>Nicolson, I have a question for you as we close the show. I'd like to know,

>in terms of the extent of this infection, we know it's present in

>Fibromyalgia, Chronic Fatigue Syndrome and the Gulf War Illness as describe

>in your excellent work. Is is also more prevalent than that? Do other

>people

>have it?

>

>Dr. Nicolson

>What we're finding is that we can't detect these highly pathogenic

>mycoplasma species in normal adults, so it's obviously much more prevalent

>in the patients with disease. We're looking at a number of other disorders,

>the most recent one we're looking at is Inflammatory Bowel Disorder and

>we're finding it there as well. It's very interesting, these different

>disorders, depending upon the organ system that's involved may involve a

>different species of mycoplasmas. The highly penetrating types of

>mycoplasmas are the ones that cause the most systemic or system-wide

>illnesses and those are the most dangerous and we're very conscious of

>this.

>A lot of people, for example, are having heart problems because of

>endocarditis, because of infection of the heart by these different

>micro-organisms. So that's something that we're looking into right now

>that's very important.

>

>Dr. Mazlen

>Yes, that would be very important. Do patients occasionally die from this

>infection?

>

>Dr. Nicolson

>Oh, yes, it's documented not only in the medical literature, but we've been

>in contact with people that tested their blood that were severely ill that

>were on, for example, coronary care units waiting for transplants and we

>found that their hearts were severely compromised because of these

>illnesses. I even had an occurrence in my own family where the heart valve

>was attacked by one of these micro-organisms. So, this is a very serious

>problem and you can't let these illnesses progress to the extent where they

>involve major organ systems like the heart.

>

>Dr. Mazlen

>Well, we're going to make a date right now to have you back on the show

>later in the year and we're certainly going to want to talk in more detail

>about many of these things that you are doing. I'll give your website

>again,

>www.immed.org. I want to mention one more time that Dr. Garth Nicolson is

>the Chief Scientific Officer of the Institute for Molecular Medicine. His

>phone number in California is 714-903-2900. This is a major, extremely

>important issue. We'll be back commenting on it again. I want to thank you,

>Dr. Nicolson for taking time out from your day to be with us today. We look

>forward to having you back on the show as a guest.