Fw: Digest immune.v001.n1309 - Dr. Donovan J. Interview

[Guest guest]

-----Original Message-----

From: immune-errors@... <immune-errors@...>

immune@... <immune@...>

Date: Tuesday, August 03, 1999 12:45 AM

Subject: Digest immune.v001.n1309

>

>--------------- MESSAGE immune.v001.n1309.4 ---------------

>

>From: Carolyn Viviani <carolynv@...>

>Subject: The Stealth Virus, Hypercoaguability and CFS

>Date: Mon, 02 Aug 1999 18:11:07 -0400

>Dr. Donovan J. was a guest on the CFS Radio Program and

>gave an interesting talk about two topics of great interest to

>CFS patients: the stealth virus and the new discovery of the

>implication of the hypercoaguability state in CFS patients.

>Donovan discusses some of the work of Dr. Berg of Hemex

>who made the amazing discovery and he also discusses some

>of the experience he has had in his own patients regarding

>this new finding. He also talks of a treatment being used

>for patients with this condition which has proven to be

>very successful and thereby offers great hope for recovery

>or improvement in a lot of CFS patients.

>

> CFS Radio Program

> August 1st, 1999

> G. Mazlen, M.D. Host

> with

> Dr. Donovan J.

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

>

> Dr. Mazlen

> We have an exciting, important show for you today. We have our guest on

> the line, Dr. Donovan , who has been a stalwart member of the

> National Stealth Virus Task Force along with myself representing work by

> the Center of Complex Infectious Diseases headed by Dr. . We're

> going to get an update on the Mohave Valley stealth virus outbreak. We're

> going to talk about important research and I just want to thank Dr.

> for coming to our show on the phone from the emergency room out

> in the Mohave Valley where he's been sewing up some automobile accidents

> this morning. Welcome, Donovan.

>

> Donovan

> Thank you, .

>

> Dr. Mazlen

> We're delighted to have you as a guest as always and you've been on the

> show before and we look forward to each and every one of your appearances.

> Can you give us some idea where things have been going with the Mohave

> Valley stealth virus outbreak?

>

> Donovan

> Well, I think the acute phase of the outbreak is kind of behind us. We're

> seeing some sporadic, kind of episodic cases now. We don't see the large

> numbers of people coming with their GI, flu type symptoms and their

> weakness along one side of their body, but sporadically we see one or two

> cases a month now, probably, really that haven't been picked up or haven't

> been recognized and many of them can trace the origin of their symptoms

> back to two years ago.

>

> Dr. Mazlen

> Are there still some new cases appearing at the fringes of your geographic

> area?

>

> Donovan

> Yes, I think so and Dr. Kundargi, the infectious disease doctor in

> Victorville, he's in Mohave Desert also, he has been treating some of the

> worst cases with IV gancyclovir and he's having about 75% success rate,

> 75% of the patients seem to respond well and improve quite well. There's a

> few that just don't seem to respond.

>

> Dr. Mazlen

> Well, in that line, following up on work that you had published earlier,

> you had a young man that was severely infected earlier. Tell us about him

> and how he's been doing. Just go back to where it started first.

>

> Donovan

> This young man was in the same class as my daughter so I kind of knew his

> case from the other side, as you might say, and he developed some behavior

> problems and some acting out type of behavior and initially they thought

> it was psychological problems because his mother and father were going

> through a divorce. But as time went on he had diplobia, his vision became

> blurry and he became weak on the right side of his body and they did a CAT

> scan and they showed white matter lesions in the frontal part of the brain

> and they were kind of spreading and he went to see a pediatric neurologist

> in Las Vegas and they did a brain biopsy in Las Vegas and it came back

> positive for foamy vacuolated changes consistent with the stealth viral

> infection. They didn't quite believe that biopsy so they sent it to

> Stamford, they did another biopsy and they came up with basically the same

> results. He had cerebrospinal fluid that grew out the stealth virus and he

> also grew it out of his blood and they gave him 4 months to live. They

> basically just expected him to die.

>

> Dr. Mazlen

> How old was he?

>

> Donovan

> He was 8 years old and kind of as a last resort, so that we didn't want to

> give up on this little boy, we tried ganyclovir on him and he went into

> remission and the remission lasted for about 6 or 8 months and then it

> started to come back again and it was manifested by pretty severe

> headaches, nausea, vomiting, dehydration and then increasing weakness on

> the right side of his body and increasing visual problems and he had to

> have another course of gancyclovir a couple of months ago and he's back in

> remission again and they're expecting him to go back to school. He's still

> not able to walk. He's still in a wheelchair but he's trying to stay in

> the regular classroom.

>

> Dr. Mazlen

> Well, he's a courageous kid and you've given him a great assistance. You

> had a lot of these cases earlier. Did others of them present with

> behavioral disorder presentation, psychosis or hallucinations or

> delusions?

>

> Donovan

> Yes, we had a few. We had one lady that she thought she was fighting with

> the devil, she thought the devil was after her and she was kind of

> hallucinating that her husband was somehow involved somehow with the

> devil. The other interesting thing was that her feet hurt really bad and

> that's kind of an interesting clinical caveat. Many times their feet will

> hurt really bad.

>

> Dr. Mazlen

> I see that a lot. Parvovirus B19 will start off with ankle and foot pain

> so it's interesting that this also mimicks it, and what connection there

> is is probably through the central nervous system.

>

> Donovan

> It must be doing some kind of peripheral neuropathy. The other things that

> I've noticed and I've seen this in about 6 or 8 cases is a kind of a

> myelopathy type picture where one nerve on one side of the body will just

> hurt really bad and it will cause extreme pain and it'll be kind of like

> in the distribution of that nerve. And there's a doctor in New Zealand

> who's seen kind of the same thing and he calls it epidemic

> myeloradiculopathy, EMR. And it actually affected his 8 year old son.

>

> Dr. Mazlen

> That's an incredible coincidence. I wanted to ask you at this point just

> to remind the listening audience that this is also occurring in other

> geographic areas. We had cases, I remember, reported in the northeast,

> also. Is that still coming in?

>

> Donovan

> Yes, there are several doctors in the New York area that are seeing

> stealth viral positive cases and there's a couple that are more of the

> severe cases that they're using gancyclovir on and they're kind of

> reporting the same phenomenon that it doesn't work for every single person

> but when it does it's really useful.

>

> Dr. Mazlen

> I can personally attest to that. I had a patient who had been visiting in

> Arizona near Mesa, contracted stealth virus infection, developed severe

> unrelenting ataxia. I treated him intravenously with IV gancyclovir for a

> month. However, unfortunately, he did not respond and went on to die, as a

> result, of pancreatic cancer, which I feel personally is connected but, of

> course, I can't prove that right now. Do you see ataxia also?

>

> Donovan

> Yes, one of the easiest ways to make a diagnosis early is to have the

> patient do the augmented Romberg where you put one foot in front of the

> other and close your eyes and see if they can hold their balance. That's

> one of the first things that goes is their balance. Their balance is just

> awful.

>

> Dr. Mazlen

> Well, this is just for the audience to remind them that if there are cases

> like this you can either get in touch with Dr. at the Center for

> Complex Infectious Diseases directly. Is he doing assays currently or are

> they on hold for the moment?

>

> Donovan

> No, he's currently doing them. He has a new doctor, I think it's a Dr. Lee

> that's helping him do the assays and I think he's planning on branching

> out into Australia. He's planning on having some laboratory in Australia

> do assays in Australia.

>

> Dr. Mazlen

> I'm delighted to hear that, actually. Everybody else should be too because

> we need to have access to this testing. This disease can be devestating

> and it can occur in patients with Chronic Fatigue Syndrome right on top of

> what they already have, which I've now seen.

>

> Donovan, we'll switch topics for a minute because you've been doing some

> work and following up on the work of Dr. Berg, or the Berg's actually, the

> two Bergs in the area of coagulation problems, coagulation difficulies in

> patients with Chronic Fatigue Syndrome. What have you found?

>

> Donovan

> Well, I went to a conference in Phoenix with Dr. and we presented

> the stealth virus information at a laboratory conference there. Dr. Berg

> was presenting his information on the hypercoagulable state at the same

> conference so I was able to sit in on some of his lecture and talk to him

> after the program and he's found some very interesting findings with

> Chronic Fatigue Syndrome. He found that all the Chronic Fatigue patients

> that he tests, and he puts Chronic Fatigue Syndrome and Fibromyalgia

> together, 92% had demonstrable hypercoaguable state.

>

> Dr. Mazlen

> 92%!

>

> Donovan

> That's very high and he did controls at the same time, 23 controls and out

> of 23 controls he only missed one control. So the false positivity rate

> was only 4 percent. So he has a pretty strong marker I think for the

> hypercoagulable state being associated with Chronic Fatigue. And that

> might explain some of the symptoms that the patients have shown. For

> example, on the MRI they have these hyperintense lesions on the T-2

> weighted images that could be consistent with Lacunar Infarctions and that

> would go along with this hypercoaguable state.

>

> Dr. Mazlen

> Sure and it would also go along with some of the neurocognitive problems

> that they have of various types.

>

> Donovan

> Like increased blood flow to the brainstem, for example.

>

> Dr. Mazlen

> Sure, there may be a lot of connections here. Now, you did a little pilot

> study on your own. Could you tell us about that?

>

> Donovan

> Yes, we sent 8 or 10 patients, some of the worse CFS or fibromyalgia

> patients that we have and they all came back positive. In fact, one of

> them was so positive that Dr. Berg said that he was in kind of a early

> state of DIC which is dissesiminated intravascular coagulation. His

> fibrinogen level actually dropped low when normally it's high when they

> have this type of coagulable state but as it gets consumed you can

> actually get a low fibrinogen level. And he also said his platelets

> started to be chewed up and he was starting to get granulocytopenia which

> indicates that kind of a consumptive coagulapathy.

>

> Dr. Mazlen

> Well, you know this type of thing is extremely important. We're going to

> have to talk more, maybe we can even get Dr. Berg to be on the show.

>

> Donovan

> I " m sure he'd be very happy to do that. He's very excited about this.

>

> Dr. Mazlen

> And he should be.

>

> Donovan

> He's getting the word out.

>

> Dr. Mazlen

> Getting the word out, but I think in terms of doing the testing like

> you've been doing, I think we need more practitioners to get involved

> offering primary health care. We have a question on line 1 from Janice

> about how do you get stealth virus. Let's put that to Dr. , in

> California.

>

> Janice

> I was curious as to how you contract the virus.

>

> Donovan

> That's a good question. I think in the epidemic here it was contracted by

> casual contact, much the same way as you would catch chicken-pox or some

> of the other herpes viruses. Stealth virus is a herpes virus, so you could

> probably contract it by contacting a person who has it.

>

> Dr. Mazlen

> Like in air travel, for example, in a large airplane or common

> conveyances, taxis etc. That's another possible source.

>

> Janice

> So how do you protect yourself from this if it's that easily contracted?

>

> Donovan

> Well, everybody who contracts it isn't going to necessarily get sick. What

> Dr. Berg found in his studies of Chronic Fatigue and fibromyalgia patients

> is that 75% of the patients who went on to develop Chronic Fatigue and

> fibromyalgia had a genetic coagulation defect.

>

> Dr. Mazlen

> A predisposition, in other words.

>

> Janice.

> Oh, OK. So in other words, if your immune system is up and functioning and

> you're basically healthy, chances are you wouldn't manifest the disease.

>

> Donovan

> Right.

>

> Dr. Mazlen

> A quick question about Dr. Berg's work about the genetic predisposition.

> He's reporting that these people may have a problem with making certain

> like the endogenous heparin in the blood. Isn't that correct?

>

> Donovan

> That's correct. He says there's a hereditary deficiency for thrombophilia

> or hypo fibrinolysis. There's about 6 or 8 genetic goofs that can happen

> that you can be born with and if you happen to have one of those genetic

> goofs, then you get an infection that can cause immune activation of the

> clotting factor, then it can lead to this cascade of events that can make

> your blood hypercoaguable. One thing that is kind of interesting that most

> doctors probably aren't aware of, there's one way you can tell if your

> patient has a hypercoaguable state is if their sed rate is low.

>

> Dr. Mazlen

> Good, I'm glad you mentioned that. Low, at what level?

>

> Donovan

> Probably less than 5 or 6.

>

> Donovan, what's happening with treatment of the stealth virus syndrome?

>

> Donovan

> Oh, yes, most recent treatment recommendations that seem to be working

> very well in patients with the hypercoaguable state is the low dose

> heparin that's given subcutaneously. They give 3,000 - 5,000 units up to

> twice a day and within 48 to 72 hours a lot of the pain and a lot of the

> symptoms, the brainfog and the cloudy concentration and the difficulty

> with concentration improves and Dr. Berg has a webpage, it's called

> www.hemex.com and he gives a case presentation of one of the first

> patients that he tried this anticoagulation treatment and I tried the

> anticoagulation on a few patients and I've had some success. Initially, it

> feels like they had just a little bit of increase in symptoms the first

> day and after that then they gradually get better but I think that's

> rather encouraging and it's not really dangerous or toxic like the

> gancyclovir. I'm kind of very cautious with the gancyclovir.

>

> Dr. Mazlen

> Me too. What about Dr. 's progress with the treatment that he's been

> working on, the Epione?

>

> Donovan

> Right, he has identified a substance that is found in the cell cultures

> that inhibits the growth of the virus and he separated it out. He has an

> approximate weight for the substance and he's found that it's filterable.

> He's found that it's heat stable. It can be heated and it's still potent.

> He can stop the growth of stealth viral cultures almost at will. What he

> needs now... he has an aminal model. He can cats that are infected and he

> can treat them and see how they respond to the Epione but each cat is like

> $1000 and it's quite tremendously to do clinical studies and also to

> molecularly characterize the substance accurately so it can be reproduced

> in great quantities.

>

> Dr. Mazlen

> Sure, you need to have it in quantities to make it available for patients,

> obviously. Well, we have that to look forward to, certainly. I want to

> thank you because you've always been very gracious to take time out from

> your busy schedule to appear with us on the show and I want to say that I

> appreciate it and I'm sure that the patients with Chronic Fatigue Syndrome

> and their families and other people appreciate your efforts very greatly.

>

> Donovan

> I'd like to say something, . You know, so many doctors are

> ill-informed and not knowledgeable about Chronic Fatigue Syndrome and they

> kind of write off the people with Chronic Fatigue as kind of psych cases

> or psychosomatic cases and I really appreciate it that there's a doctor

> like you out there who's willing to listen to the organic side of the

> equation and I know it's personally costly to you and I just want to say

> that for me and for all the other people on the Internet that read the

> transcripts of this program, they really appreciate your work.

>

> Dr. Mazlen

> Thank you, so much Donovan, we'll be talking to you again soon.

>

> (Donovan can be contacted through email at donavan@... or

> visit his website at http://www.ctaz.com/~donavan )

>

>

> Transcribed by

>

> Carolyn Viviani

> carolynv@...

>

> Permission is given to repost, copy and distribute this transcript as long

> as my name is not removed from it.