"Precision medicine: retrospective chart review and data analysis of 200 patients on dapsone combination therapy for chronic Lyme disease/post-treatment Lyme disease syndrome : Part 1
Combo treatment 1 was a tetracycline, rifampin, dapsone. Combo treatment 2 was a tetracycline, rifampin, dapsone and either cephalospom or a macrolide.
The choice of treatment was based on their prior clinical response to these medications and co-infection status. All patients were placed on atleast 3 different probiotics. Plaquenil, grape seed extract, stevia, and oregano oil was also noted.
All patients had complete CBC's, CMP's, and methemoglobin levels tested every 3 weeks. More than 1 laboratory was used to assess each patient. Galaxy Lab was not used as iit is unavailable in N.Y. State.
Both treatment protocols were effective in decreasing symptoms, there was no difference in outcomes.
Purpose: Collected data from 200 patients for the efficacy of dapsone combo therapy and agents that disrupt biofilms for the treatment of chronic Lyme disease/PTLDS. Also performed labs for co-infections. We evaluated the efficacy of newer persister drug regimens like dapsone. We evaluated how other TBI's may be contributing to the burden of chronic illness leading to resistant symptomatology.
Patients: Over 200 patients recruited from a specialized Lyme disease medical practice who have been ill for 1 year completed a patient symptom severity questionare, before beginning treatment, during, and after 6 months of dapsone combo therapy. Excluded from trial: No patients under 18 years old. No patients who were allergic to dapsone combo therapy. No pre-trial abnormal labs/anemia
All patients met criteria for Lyme disease. These patients had either failed or had inadequate response to prior antibiotic therapy or had relapsed with persistent symptoms after stopping anti-infective treatments.
Patients symptoms were monitored every 6 -8 weeks. Rigorous patient safeguards were in place. Must get blood labs every 3 weeks. Dietary guidelines. Name and phone number of medical center staff for medical issues.
Survey Symptoms measured were: 1. Fatigue 2. Muscle/joint pain 3. Headache 4. Tingling, numbness, burning 5. Sleep problems 6. Forgetfulness/brain fog 7. Difficultly with speech or writing 8. Day/night sweats Patients indicated the severity of each symptom using a 5 point scale, 1 being no symptom and 5 being the most severe.
Results: 53% of patients took dapsone therapy atleast 6 months. 46% no longer take dapsone therapy. Dosages used were 25mg (12% of patients), 50mg (23.5%), 75mg (12%), and 100mg (51.5%). 20% of patients used pulsed therapy.
Side Effects: 66.7% of patients experienced herxs. 48.3% anemia. 7% mild rashes 18% elevated methemoglobin levels 3.5% blue hands or lips 21% shortness of breath These were reversed by stopping meds, using higher doses of folic acid, Glutethoine, and N-acetyl-cysteine.. No C-diff was reported.
64% of patients had exposure between 5 - 8 co-infections. 45% had positive IgM blots showing active infections,
Borrelia, Bartonella, Babesia, and Mycroplasmas species were all shown to persist despite commonly prescribed courses of antibiotics or anti malarial/Babesia therapy.
Clindamycin and quinine as well as atovaquone and azithromycin for Babesia were shown to be inadequate. Research into more effective treatments for Babesia are urgently needed.
Part 2 will address abnormalities found on the MSIDS maps and optimal treatments. Coming soon.
[ 02-22-2019, 11:37 PM: Message edited by: Bartenderbonnie ]
Posted by t9im (Member # 25489) on :
Hi BTB:
Thanks for posting this. I know he has been cutting edge with Dapsone and he has kept trying to help his patients.
If I remember this right his wife also has had a persistent borrelia infection and the dapsone treatment has worked which is why he expanded it to many more patients.
I do know one does need L/T meds to successfully treat tick borne diseases.
[ 02-25-2019, 07:21 PM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
Hi folks - I have just edited this thread to remove any LLMD bashing - we do not bash LLMDs here. Also we discuss treatment options without putting other options down, since we're all different.
The issue was recognition of mold toxicity in Lyme patients. I agree this is a major issue, as I have recently watched the online mold summit.
But we need to discuss mold issues without attacking doctors, so I will be private messaging the person whose posts I removed. We would like to hear info about mold, but not attack doctors.
Posted by Tincup (Member # 5829) on :
Thanks Robin4927459573!!
Posted by kidsgotlyme (Member # 23691) on :
These doctors are true warriors and I love every single one of them!!!