@VerlorengezondheidM,
Er zijn opmerkelijke verschillen tussen de behandeling van R.H en die van het aantal Lyme Ilads artsen in Europa & Nederland die met dapsone en of disulfiram werken bij de patiënten. Er wordt gewerkt met lagere doseringen en er wordt niet gewerkt met de genoemde aanvullende middelen.
R.H werkt met Lyme en co-infecties testen van Igenex. Een aantal Lyme Ilads artsen in Europa & Nederland test en hertest met 'Phelix Borrelia Phage test' (niet gevalideerde test, in een lopend (wetenschappelijk) onderzoek en waarvan er een
lopende procedure patent(octrooi) aanvraag bij het European Patent Office (EPO) is; Bron
https://register.epo.org/application?nu ... ab=doclist) waarbij de test
niet kan testen op Bartonella en op andere co-infecties.
Hoe kan het een en ander uberhaupt goed met elkaar worden vergeleken qua diagnosestelling, de behandeling, de betrouwbaarheid en de resultaten voor de Lyme- en chronische Lyme patiënten in Europa & Nederland?
Hoe zit het met de
60%-70% van de Nederlandse patiënten en of van de leden van de Lymevereniging die op basis van de 'Phelix Borrelia Phage test'
B. miyamotoi/Relapsing Fever hebben?
Dr Louis Teulières 1 oktober 2020 - Lyme Disease: Are we looking for a wrong culprit? Tanja Mijatovic van Red Laboratories; Bron
https://www.youtube.com/watch?v=Mr2hKGOjCZM Ilads 12 september 2020; Bron
https://www.ilads.org/ilads-conference/ ... se-culprit en Bron
https://www.ilads.org/ilads-conference/ ... ecific-pcr'Efficacy of Double-Dose Dapsone Combination Therapy in the Treatment of Chronic Lyme Disease/Post-Treatment Lyme Disease Syndrome (PTLDS) and Associated Co-infections: A Report of Three Cases and Retrospective Chart Review' by Richard I. Horowitz and Phyllis R. Freeman; Bron
https://www.mdpi.com/2079-6382/9/11/725Discussion
.. Based on the above in vitro and our in vivo studies, there is a need for safe and effective drugs that can eliminate all morphological forms of B. burgdorferi including persisters and attached biofilm forms. Both disulfiram and dapsone are known to have potential adverse effects. Disulfiram commonly causes fatigue, sleepiness, headaches, and a metallic taste, although more severe reactions including dermatological, hepatic (hepatitis, hepatotoxicity), cardiac, neurological (peripheral and/or axonal polyneuropathy, sensory-motor polyneuropathy, optic neuritis, seizures), and psychiatric (confusion, psychosis) reactions, may result [112]. In patients with Lyme disease and associated co-infections, underlying cardiac, hepatic, neurological, and psychiatric conditions can also co-exist [88,113,114,115,116,117], confounding etiologies and requiring a differential diagnosis with monitoring of symptoms and/or use of lower doses of disulfiram to minimize side effects [39].
Dapsone also has four common side effects, described as “Do No H.A.R.M.”, i.e., Herxheimer reactions (due to increased inflammatory cytokine production), anemia (secondary to inhibition of folic acid metabolism, or hemolysis due to G-6-P-D deficiency), rashes (due to sulfa sensitivity), and methemoglobinemia (due to increased oxidative stress and diminished oxygen-carrying capacity) [14,118,119,120].
Although some of these symptoms were seen in our patients undergoing treatment with DDD CT (Herxheimer reactions, anemia, mild elevations in methemoglobin), adverse side effects were minimized by ruling out G-6-P-D deficiency; using high-dose folic acid therapy with folinic acid (50–75 mg/day) and L-methyl folate (30–45 mg/day); and administering glutathione precursors (NAC 600 mg BID), alpha lipoic acid (ALA, 600 mg BID), and glutathione (GSH, 1000 mg BID) with methylene blue 50 mg BID as needed. Any decrease in red cell counts or significant anemia secondary to dapsone resolved in all of our case studies within 1–2 months of stopping DDD CT while remaining on folic acid supplementation, and none of our case studies developed rashes or significantly elevated levels of methemoglobin. Use of NAC, ALA, and GSH helped to decrease oxidative stress, support detoxification, and minimize the risk of methemoglobinemia [121,122,123], while doses of glutathione were increased to 2000 mg QD or BID along with alkalization (using sodium bicarbonate or fresh squeezed citrus) for Herxheimer reactions and/or any increased levels of methemoglobin [76,124,125]. Methylene blue can also be given orally to mitigate and rapidly reduce methemoglobinemia [120].
It was only necessary in one of our three case studies reported here, although in other chronically ill Lyme-MSIDS patients given dapsone at 100 mg or higher [14], oral methylene blue was occasionally needed and was effective in keeping methemoglobin levels below 5%, allowing continuation of therapy. Finally, high-dose probiotics (greater than 80 billion CFUs/day) with multiple strains of Acidophilus, Bifidobacterium, and Saccharomyces boulardii were effective in preventing antibiotic-associated diarrhea [126].
A 7-8-week regimen of DDD CT using the above persister and biofilm protocol with higher doses of dapsone was therefore found to be safe and effective in our 40 patients. It was superior to lower-dose dapsone combination therapy (DDS CT), leading to long-term remission in 45% of patients.
However, several important questions remain regarding the safety and efficacy of persister drug regimens. Bacterial cells in biofilms have been shown to have increased antibiotic resistance compared to planktonic forms, leading to recalcitrant infections [127,128], and persister cells have been shown to retain their phenotype for days or weeks after withdrawal from colony–biofilm culture [129].
Although 7-8 weeks of treatment with DDD CT was effective in these 39/40 patients reported here, an important question that needs to be addressed is how different Borrelia species and/or associated co-infections including Babesia and Bartonella species would affect treatment outcomes in other patients with long-term tick-borne symptoms. Upon discontinuation of therapy, six out of seven of our patients who were Bartonella FISH positive showed improvement, but none reached remission of their symptoms. Fifty percent of patients who were Babesia FISH positive reached remission, and the other 50% reported improvement. Other studies have found active infection with Babesia and/or Bartonella spp. by FISH testing in chronically ill tick-borne patients [130,131].
Previously, dapsone and disulfiram were both found to be effective in decreasing symptoms of babesiosis, although relapses were noted with both medications [14,39]. Resistance to standard treatments has been reported for both Babesia and Bartonella spp. [69,70], and resistant biofilm and persister forms have also recently been reported for Bartonella [132,133]. Would addressing Babesia and/or Bartonella with newer medication regimens, including tafenoquine for Babesia [134] and/or novel combination therapies for Bartonella (i.e., macrodantin, rifampin, methylene blue, gentamycin with essential oils) [133], prior to DDD CT improve clinical outcomes in co-infected patients? Similarly, the three biofilm agents (Stevia, oregano oil, Biocidin) we used in our study were all found to have efficacy against biofilms and morphological forms of Borrelia [33,34,104], but would other biofilm agents or combinations against Borrelia and/or associated co-infections be more efficacious [33,135]?
Randomized controlled trials (RCTs) would be necessary to answer these important questions..
De kosten van de behandeling bij R.H zijn érg hoog $30.000 voor 1 jaar en niet alle patiënten krijgen verbetering of herstel zie de reacties van de mensen; Bron
https://www.facebook.com/2LymeDisease.org/In Lyme patiëntengroepen melden er mensen dat zij moeten stoppen met de behandeling met disulfiram en of dapsone omdat er ernstige bijwerkingen/klachten (neuropathie, hartproblemen, psychische klachten/psychose) ontstaan, de periode van 6-12 weken behandelen niet wordt gehaald, het middel niet goed wordt verdragen bij lage en hoge doseringen, sommigen op de spoed (SEH) in het ziekenhuis terecht zijn gekomen, dat de leverwaarden erg hoog worden.
Misschien is het goed als de Lymevereniging bij het promoten van disulfiram en dapsone de patiënten ook informeert over de nadelen en de risico's voor de gezondheid. Aan de patiënten wordt hoop gegeven en mensen gaan om die reden meedoen aan experimentele behandelingen. Er is nog onduidelijk of er
blijvende resultaten van verbetering en herstel mogelijk zijn voor de patiënten.
Voor geneesmiddelonderzoek is dubbelblind onderzoek via een gerandomiseerd onderzoek met een controlegroep met een grote groep patiënten met chronische Lyme/PTLDS de enige acceptabele standaard voor het bepalen van de werkzaamheid van een bepaald middel.
