We've heard a lot of different speakers and most people have already said what I want to say. But I'm going to say it in a different way, and really, there's only 2 simple points that I want to make.
I used to work in the Space Programme. At 33 I went to medical school, then I went to engineering school, and then I worked for the Space Medicine Research programme. When I worked on this, there were no textbooks and we had to start from scratch. I think that this gave me the skills to help with my research into Lyme, and allowed me to approach it in a non-medical way. To get anything accepted in the medical world, you have to have it peer-reviewed, and I think this is right. But where does the truth come from? From logic and understanding, and what we see about us. The whole foundation of science is the premise – where you start.
So I'll tell you where I am and my perspective. I became sick in California. I was flying a plane into land and I was told to take runway 35 left. This was the first sense I had that something really bad was happening to me, because I thought, "What on earth does left mean?" I immediately thought I was having a stroke, but anyway, I made it to the runway somehow. Within a few weeks, I couldn’t even remember what somebody had just told me the day before and I resigned. I spent the next two years in bed. Slowly I found the magic bullet – immunoglobulin – which I now know is a powerful anti-inflammatory agent. So I got a cheap supply and plugged myself in – 5g IV a day – and it brought me back to near normal in 6 weeks.
But I was pretty sure that whatever I had it was a fatal disease and that I had limited time. I was getting close to 70 years old too. So I set about on a journey.
I asked Dr. Salvator in Houston if I could come to her chronic fatigue clinic and see patients one at a time and note everything about what they told me and what I saw and felt. I did that for 4 years, 10 patients maximum a day, an hour for each patient. And we built a database piece by piece. The plan is to print out the trends, numbers, and comparisons of things that haven't been discussed yet.
Dr. Salvator had been working on chronic fatigue for 19 years and she knew that aetiology was important. Then in 1998 a case of Borrelia came through on the lab results. And in 1999 – 2000, I found that I had this disease. I started amoxycillin 1g, 3 times a day. 14-15 months later all my symptoms had gone. I didn't have any more gammaglobulin.
There are only a couple of points that I want to leave you with.
"Lyme disease" has a very narrow definition. One of the criteria is that you must come from an endemic region – this rules out most patients! What we're really talking about is Borreliosis. "Lyme disease" is too restricting. All along we've been bound up in terminology and semantics till we can't really see how large this is and what it looks like.
We were getting reasonable improvement in patients in 6 months on oral antibiotics. The plan is to publish everything that we found - we saw that there are things that occur over and over again, and that we see frequently in our patients. A physical examination of the patient is a piece of cake. There are about 30 things you can do with your hands and eyes. Looking at the pupils and checking for peripheral neuropathies in the hands and feet for example – women have more neuropathies than men. Then you get patients with motor symptoms too, and then you get the patients who are purely motor. I think we're beyond using the terms "Late Lyme" and "Post Lyme" now. The definitions don't match the cases.
Lyme disease is a zoonosis – an animal disease. Zoonoses get to humans and
typically ends there. They don't go any further. So if your whole family has Borreliosis, then it must be that you all stepped on the same tick at the same time!
We started with the CDC (Centers for Disease Control) model of Lyme disease, We took 2 years to review everything that had ever been written on Lyme disease – 8000 abstracts. (We found there was so much research done into ticks, you’d think the tick was sick!) And in November 2002, we published a paper based on this which gave 13 premises supporting the CDC definition of Lyme. The 13 premises are in 5 categories:
Initial presentation
Testing confirmation
Pathogen transfer
Course and outcome
History and distribution
Initial presentation – I have seen 575 patients and only 3 of them had "Lyme disease" as it is defined. They had been bitten by a tick and 3 weeks later they developed what the CDC call 'early Lyme disease'. Patients do not normally present with acute Lyme disease. The average patient has already had Lyme for 5 – 10 years. According to the CDC, the EM rash is common in Lyme disease, but it really isn't.
Testing – You need high antibody levels to get a positive Western Blot result. The test has been based on acute early Lyme disease patients who get numerous western blot bands. This is OK for "Lyme disease" as defined by CDC, but not for most patients. So let them keep this set of rules (which are really narrow) and we'll create a new set of rules for 'borreliosis'.
Pathogen transfer – and that you can be infected by zoonosis transfer only. They state categorically that there is no sexual transfer and no congenital transfer.
Course outcome – According to the CDC, infection is self-limited (it'll go away on its own one day!). Late cases are no longer infected, but have 'post-Lyme' syndrome or the results of damage from the disease.
History and Distribution – The CDC says Lyme disease is most prevalent in the U.S. But Borrelia has been found in every country, except perhaps Iceland (could be too cold). I even met a man at lunch who said he got Borrelia from a penguin in the Falklands!
So our data led us to a very different set of conclusions from those of the CDC. And in science you have to go with the weight of the evidence – and the weight of the evidence was outside of the CDC's conclusions. These are our conclusions:
Conclusions (A)
1. There are two types of human infection with Borrelia: animal to human, and human-to-human.
I have yet to find a family that isn't totally infected. Tessa Gardener has done a lot of work into proving gestational (mother to baby) transfer. She tested the mother in first, second, and third trimester (infected in all three) and then tested the cord blood and baby as soon as it was born (infected). I guess maybe 70% of infected babies are not even born. It could be that when the infection is passed from human to human, the immune system has changed it and made it a different disease.
2. Human Borreliosis has been around for millennia.
3. Borrelia persists for life – unless you treat it. Even then, it may persist.
4. The prevalence of Borreliosis is global and massive.
Conclusions (B)
1. The Lyme disease concept is limited. We should stop using Lyme.
I get along a lot better with the medical community when I use the term 'Borreliosis.'
2. Human Borreliosis is far broader than Lyme disease.
3. The two are distinct in presentation, treatment, etc.
All I care about is getting myself well and everybody else well. It doesn't take you long to have this disease to realize that you don't want anyone you know to ever have to go through it.
I think sexual transfer is going on big time. I have seen 3 patients who within a few months of getting ill, their spouse got ill too. I used to get people really well and not think about the spouse. Then they'd start to get sick again and I'd treat them again, and this would go on 2 or 3 times. So I started testing the spouses – none of them were negative. So now if I treat spouse too, it seems to block transfer.
And I won't name all the other diseases that I think are associated with borreliosis. If it's being transferred effectively (gestationally and sexually), I think it's only 40 or 50 years till the whole of humanity is covered! But not everyone may have symptoms. That's not to say they won't develop them later.
I have seen 576 cases up to May 31st, 2004, in Houston.
Treatment
Treatment is highly individualized – and works! I'm going to publish a paper, but everyday, my conclusions are supported by the patients I see. I see astonishingly good results from treatment.
But soon it'll be time for me to go fishing and retire! But In the end the truth will be the truth and will come out.
Oral antibiotics are too slow. So we have moved away to IV treatment. We are even having extraordinary results with Motor Neurone Disease patients and can reverse up to 50% of symptoms using super high dose IV ciprofloxacin (?).
There are members of all diseases with no known cause that are candidates to be looked at with a view to borreliosis:
Chronic syndromes
Autoimmune diseases
Neurological disorders
Mood / cognitive disorders
Somatoform illnesses
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