Rescheduled (26-27 Sept 2020): 2nd European Crypto-Infections Conference 2020; Bron https://www.lymeresourcecentre.com/rese ... rypto-2020 Agenda; Bron https://lymevereniging.nl/wp-content/up ... a-v-11.pdf
Interessante lezing het gaat over 'Potential Patient-Reported Toxicities With Disulfiram Treatment in Late Disseminated Lyme Disease'; Bron https://www.frontiersin.org/articles/10 ... 00133/full10:30 uur The importance of patient reported outcomes - Dr Alain Trautmann
Discussion
Published scientific articles allow us to draw the conclusion that, in vitro, DSF can undoubtedly kill certain bacteria strains, and that in vivo, DSF can be toxic to both bacteria and the human body. These toxicities can be both acute and long-term.
One can propose different hypotheses to explain these toxicities. They might be mediated by the inhibition of copper-dependent enzymes, such as ALDH or dopamine β-hydroxylase, or the blocking of the NLP4 molecule, or through an oxidative molecule increase, and possibly through yet unidentified mechanisms. Part of these toxicities may also depend on the microbiota, in which some bacterial or yeasts species have a propensity to produce fermentation-derived toxic AcH. It would be worth testing if any intake of bacteria such as Lactobacillus, which have a high ALDH activity, could be used to counter the DSF-induced toxicities.
On the other hand, many studies have reported that patients with PTLDS have an increased sensitivity to pain, which can affect vision, hearing, touch, and even smell, as reviewed by Batheja et al. (35). These chronic pains can be related multiple to chemical sensitivity and chronic fatigue syndrome, in which the pain sensitivity is modified as well, as reported in Gulf war veterans (36). There is increasing evidence for abnormal sensory processing in these syndromes, with a low “unpleasantness threshold” for multiple types of sensory stimuli (37).
The differences observed for effective concentrations of DSF between alcohol-dependent patients and those suffering from PTDLS or SPPT could also be linked to a such central sensitization often observed in patients suffering from borreliosis (35).
It is necessary to understand why DSF toxicity appears particularly severe and frequent in patients with Lyme Disease, and to rapidly explore the reasons for such DSF toxicity in Lyme Disease animal models. Until we have the first answers to this question, it would be premature to consider DSF as the new miracle molecule for patients suffering from late disseminated Lyme Disease.
Worden de leden van de Lymevereniging, de Lyme en de chronische Lyme patiënten die Disulfiram willen gaan gebruiken of gebruiken op deze belangrijke informatie geattendeerd?Patient-Reported Outcomes
We have recently received from French associations of Lyme patients the results of an enquiry sent to their members suffering from persistent Lyme Disease. The main questions were: have you taken DSF as a treatment for your disease? Which benefits or side effects did you experience? 16 patients have answered.
The clinical features most frequently reported were major fatigue, articular pain and cognition complaints mainly involving memory, whether or not patients were seropositive for Borrelia. The results are presented in Table 1. The conclusions are: 13 out of 16 patients experienced DSF-induced toxic or side effects, mainly concerning the nervous system (neuropathies, headaches, dizziness, difficulty of concentration and expression, sleep disturbance, general pain increase, increase in general fatigue). Several patients reported a more specific increase in their osteo-articular pains, nausea or intestinal disorders.
When taking DSF, some patients simultaneously experienced both negative effects on some symptoms and improvement of others. All in all, 7 out of 16 patients perceived benefits mainly on fatigue and pain, especially after stopping DSF. Others could not differentiate whether partial improvements were due to DSF or to the antibiotics taken during the same period.
Some of DSF toxic effects observed in Lyme patients could be due in part to high initial DSF doses, similar to those used for alcohol-dependent patients. On the other hand, some of these effects could have been due to Jarisch Herxheimer reactions triggered by DSF-induced death of Borrelia. However, some patients, who had already experienced Jarisch Herxheimer reactions before, reported that some of the reactions encountered with DSF treatment were clearly of a different nature. Collectively, these observations suggest that patients with persistent Lyme Disease are more sensitive to the toxicity of DSF than people who have been treated for alcohol dependence, and that in these patients, DSF-induced toxicities are not all related to Jarish Herxeimer reactions.
Bij het promoten van Disulfiram is het belangrijk om de mensen volledig te informeren. Er is nog geen sprake van een doorbraak en is de voorzitter van de Lymevereniging om de redenen genoemd in het artikel van Dr Alain Trautmann gestopt? Bron viewtopic.php?f=5&t=2322&start=210#p24969
Hieruit blijkt dat mensen-patiënten te gauw achter iets aan gaan lopen. Datzelfde geldt voor de Phelix Phage Borrelia test (niet gevalideerde test, in een lopend (wetenschappelijk) onderzoek). Daar lopen sommige patiënten en een aantal Lyme artsen, Ilads werkend, ook achteraan en wordt er een diagnose Borrelia en of B. miyamotoi gesteld op basis van positieve uitslagen en een behandeling gestart of wordt de behandeling aangepast met onder andere Disulfiram.Finally, in 2019, Dr. Liegner reported three cases of patients who had been treated with DSF after a Lyme Disease that had lasted for several years with heavy treatments (27). For instance, at one point, one patient simultaneously took amoxicillin, clarithromycin, hydroxychloroquine, metronidazole, atovaquone / proguanil, and amitriptyline. After 9 years of illness he took DSF for 3 months: the symptoms of the Lyme Disease seem to have disappeared but the patient had a temporary psychiatric hospitalization. The second patient was on DSF for 6 weeks. The symptoms of the Lyme Disease improved but the treatment was stopped following a syncope, which resulted in a concussion and required hospitalization. In summary, the Liegner study reports three cases in which DSF seems to have been effective against late Lyme Disease, but in two of them neurological problems occurred during the treatment. These three cases have attracted considerable attention and raised great hopes in the Lyme Disease patient communities. However, in a recent talk at the 2019 ILADS Symposium, Dr. Liegner presented data on
30 Lyme Disease patients that he had treated with DSF. In 18 of them, DSF provoked either peripheral neuropathies or psychiatric problems, or both.
En het bestuur van de Lymevereniging & het Lymefonds/Stichting Lymefonds lopen er ook achteraan en gaan aan het 'project' een aanzienlijk geldbedrag van het ingezamelde bedrag van €30.636 doneren. Een aantal leden en donateurs van de Lymevereniging & het Lymefonds/Stichting Lymefonds zijn enthousiast en lopen er achter aan zonder zich zélf goed in te lezen.