First of all - WELCOME TO LYMENET!
Hope the information helps - it is from a conference that took place earlier this year.
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Here is a copy of my conference notes. This isn't meant to be a complete record of events, I am sure there were many moments when I lost concentration, and inevitably there will be ommissions. These notes just
cover the points that were of particular personal interest. I have tried to avoid putting any personal interpretation on the speakers comments.
(Name omitted by request)
Third UK Conference on Tick - Borne Diseases, York, 2004
Friday 18th June
Prof Sam Donta
Symptoms
Dr Shattock (female) found in her studies that 30% of patients with Lyme disease develop a chronic illness, a CFS type illness. Between 50 to 80% of Lyme disease
patients have neurocognitive symptoms, including short-term memory loss. There may be psychiatric manifestations, the seminal work in this area has been conducted by Brian Fallon. Lyme disease can present
as almost any multisystem illness, and that is the problem so far as diagnosis is concerned. We need to be careful because not all patients with Lyme disease have severe disease, it may be mild or even asymptomatic. In a study at a psychiatric hospital it was found that 30 to 50% of patients, compared to 5% of controls tested positive for Lyme disease. Other symptoms may be cardiovascular, for example, palpitations or tachycardia, and this can happen in a 20-year-old. There can also be autonomic problems, there may be tremors and there can be sensory neuropathy. Borrelia localise to the nerve roots. In addition there can be gastrointestinal symptoms, Prof
Dona was surprised at the number of patients
presenting with a picture indicative of IBS. There can be sleep disorder and many patients with chronic diseases stop dreaming, then as they are cured they go
through a stage of vivid dreams.
Neuroimaging
MRI scans are mostly normal, with only 5 to 10% showing abnormalities. SPECT scans are more informative with up to 75% of patients showing abnormalities.
Testing
PCR may be too sensitive and pick out even transient asymptomatic bacteraemia. For Lyme disease PCR reactivity is rare, and a positive PCR does not necessarily show active disease. PCR of spinal fluid
is difficult and can yield negative results. In other words, the Borrelia isn't where we are looking. It is like the old story of looking for lost keys under a lamppost when it they were lost elsewhere. Another
disadvantage of PCR testing is the risk of
contamination, for example, the lab technicians may leave their sandwiches in the fridge with the samples!
In terms of developing an accurate test for the future, he thinks we need possibly to look for a metabolite. He also thinks that we need a tissue registry for PCR testing.
So far as the differential diagnosis of Lyme disease versus multiple sclerosis is concerned, MRI can't do this. Abnormal findings on SPECT scans were trivialised initially, but these patients can be followed and the changes are reversible with therapy.
At this point, Prof Donta made a comment about which lobes were particularly affected, I think he specifically mentioned the temporal and frontal lobes.
Treatments
First there is the question of whether symptoms are due to ongoing infection or due to the so-called post Lyme syndrome. Prof Donta's opinion is that the symptoms are the same in chronic illness as they were from the infection, so he thinks symptoms are due to ongoing infection.
Borrelia is sensitive in vitro to: Penicillins, Cephalosporins, Tetracyclines, Clarithromycin and the Macrolide group, and Quinolones. Borrelia is very sensitive in vitro to the Macrolides. Quinolones have
side effects. Beta lactams don't get into cells.
Prof Donta feels that intracellular antibiotics seem to work better. Therefore, it appears the infection has gone intracellular.
Metronidazole, why does this have an effect in Lyme disease patients? Borrelia has no genes to metabolise Metronidazole, therefore, it can't have any direct
effect. So why do Lyme patients respond to
Metronidazole? Prof Donta thinks that perhaps the metabolic products of gastrointestinal bacteria must be detoxified, and that the Lyme patient has become sensitised to these toxins. This could mean that Metronidazole, or other antibiotics for that matter
have an indirect effect and work by removing these toxic gastrointestinal bacteria.
Unlike Doxycycline, Tetracycline is not highly protein bound. In chronic Lyme disease, it must be used long-term, over four to six months. He uses Tetracycline in six-month pulses at which point he may
then instruct the patient to take a break from treatment and see how they feel. In Lyme disease there is a two to one female to male ratio, possibly this is due to the hormonal influence. He also sees an association between shingles and Lyme disease, possibly the neuron is challenged by having more than one infection to deal with.
Before 1992 Prof Donta used only intravenous Cephalosporins and oral Tetracyclines. He found that long-term intravenous antibiotics didn't work. For those patients with two to three years disease duration a treatment of at least 18 months is normally required, the good news is that up to 75% of these
patients improve.
Macrolides: there has been some good work done by Dr Rhodes lab. Prof Donta found that a lysosomotropic agent is necessary for the Macrolide antibiotics to work effectively, he uses Hydroxychloroquine at a dose
of 200 mg twice daily or 400 mg once daily.
Specifically he uses Clarithromycin 1000 to 1500 mg daily, or, Azithromycin 250 to 500 mg daily. There may sometimes be a Herxheimer reaction but generally
the longer you have been sick, the longer it will take to improve. If you have been sick over three years it may take several weeks before you improve.
He often finds that there is IgM reactivity in chronic disease, this could be due to an antigen excess.
Supplements
Dr Donta feels that we need to be careful here as it is not scientific and could be seen as quackery.
Research on the Borrelia genome has shown that certain nutrients are required. The body withholds iron causing anaemia of chronic disease. Vitamin C is
acidifying and should not be used with
Hydroxychloroquine. Therefore Dr Donta asks his patients to humour him and not to take any supplements. Hyperbaric oxygen is something that may produce a transient improvement. Heat? You can't fry
it!
Dr Raphael Stricker
30% of tick bites are to the leg. NB: June and July are peak months for reported disease onset (my EM rash was at the end of May).
Neurological manifestations
Visual migraine is very common and it is a vascular phenomenon. There can be acute psychosis and there may be sleep disorders. This was studied by Eileen Hilton in New York, all patients had a sleep problem
even if they didn't know it. This, on its own could cause fatigue.
Testing
Re PCR testing: there is a New Jersey physician who does repeated tests and approximately 1 in 10 is positive. The LDA test (from Igenex) finds dead bacteria in urine. He likes to do the CD57 lymphocyte
test. SPECT scanning can show inflammatory and perfusion defects. There is also neuropsychological testing which will show cognitive deficits. The patient may not even be aware of this until testing.
The CD57 test shows decreased numbers of these cells in chronic Lyme disease. CD57 cells are a subset of NK cells, distinct from the main CD 56 subset. The TH1 cytokines down regulate CD57 cells. Studies have shown that in acute Lyme disease the CD57 count is normal. However, in chronic Lyme disease, pre-treatment the CD57 count is low, during treatment half the patients were low and after treatment all patients had normal CD57 counts.
In AIDS the CD57 count is normal, despite T-cells being abnormal. Therefore this abnormality appears to be specific to chronic Lyme disease. This defect can
persist in chronic Lyme disease and has been
documented in a patient over 10 years. It is a useful test for monitoring treatment.
Treatment
For neurological disease he uses intravenous
treatments. The treatment must be prolonged. He rotates antibiotics to reduce the risk of resistance arising. Intramuscular therapy also appears to work well for neurological Lyme disease. Doxycycline and Minocycline have anti-inflammatory properties. He finds that Amoxicillin and Augmentin are less effective in chronic Lyme disease.
He uses oral antibiotics in combination. A Macrolide and a Cephalosporin, for example, Clarithromycin or Zithromax with Omnicef or Ceftin. Or a Macrolide and Metronidazole.
Dr Bill Harvey
Bill was initially diagnosed with chronic fatigue syndrome. He resolved his symptoms with gammaglobulin, taking 5 g intravenously. I'm not sure how often he infused the gammaglobulin or for how long
he continued the treatment. He commented that
gammaglobulin is a potent anti-inflammatory. He then took 1 g of Amoxicillin 3 times daily for 14 to 15 months. This cured him and he could stop the gammaglobulin treatments.
Bill Harvey spoke in a Texan drawl. When he was introducing his talk, he warned us that some of his opinions would be controversial. Bill Harvey says that one in four people globally, may be infected with Borrelia. With 50% of these people being asymptomatic, others only having very mild symptoms, and still others having chronic illnesses. He believes that sexual transfer is possible and
supported his opinion by saying that in his experience some people don't get better until their partner is treated at the same time. He has tested 70 partners and all of them have been positive by Nick Harris
(Igenex) Western blot.
When some delegates, sitting at the back of the lecture theatre, asked Bill to speak into the microphone, because they couldn't hear him, Bill told them that hearing loss was a symptom of Lyme disease (laughs).
Dr Andy Wright
Andy Wright took the stand and said that as a medical adviser to Action for ME he was finding it increasingly difficult to answer " Dear Doctor" questions without mentioning Borrelia. However, he has been banned by Action for ME from mentioning
Borrelia on the grounds that there is no evidence linking it to ME/CFS.
Dr Wright, started his presentation by talking about some of the epiphenomena and symptomatic treatments that he has used over the years to treat ME. He has used high-dose B12 for ME. Regarding stress he said that the adrenal glands had no way of knowing if it was truly a dangerous situation or just �the wife� (laughs)!
He has tried low dose heparin, based on Dr Berg's work on hypercoagulability. Dr Berg believes that there may be a genetic predisposition to hypercoagulability
and that this could be why some people get ill from an infection and others don't.
He believes that increased sympathetic activity can put major lymph vessels in spasm and this can cause the lymph to flow in reverse. Correcting a back
condition and or lymphatic massage can help.
This opinion is based on the work of Raymond Perrin.
Regarding coagulase-negative staphylococci, he believes that this is only an opportunistic infection. From observations he has made using his microscope he feels that when Borrelia is seen coming out of a white blood cell this happens in the sickest people. He finds that 5% of red blood cells are infected and asked the question of whether Borrelia in red blood cells is the problem.
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There's plenty more where that came from.... I just hope this info answers some of your questions.
Feel free to ask away your doubts on this site, the wonderful group of Lymies on this site will do the very best to help you out.
Best wishes,
Stella
[This message has been edited by Stella (edited 21 August 2004).]
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