-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
The 3 patients that asked to try disulfiram, are patients of Dr L. I follow this LLMD when he speaks at conferences. He is located 2 hours north of New York City on the Connecticut border.
Disulfiram is cheap, around 1.50 a pill!
How wonderful it would be if it really works. ππππππ They knew this drug worked since 2016 and still no published human trials as of yet, except for Dr L.'s small study of 3 patients.
Posts: 2977 | From Florida | Registered: Nov 2016
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Ann-Ohio
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posted
Dr. L. ia great! I would certainly trust him to know. I hope some other patient trials are underway for disulfiram.
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Does anyone know if there is any way to get this for self treatment?
After my last horrific MCAD episode a year ago following an endoscopy procedure (anesthesia being the trigger), I have not been able to work at all and am barely surviving.
No money for a local doctor, an out of state LLMD would be completely out of the question. I am ready for drastic measures, don't really care which way it might go, either.
I thought the Lyme was bad enough, when the devastating autoimmune reactions began, and which never seem to end, it makes this illness almost completely unbearable.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
no_lyme_in_florida
Please do not attempt to treat yourself. There is a LLMD in Naples. You must be seen by a LLMD.
Here is Dr L's notes and published research. Everyone please read;
Three patients, each of who had required intensive open-ended therapy for control of symptoms of chronic relapsing neurological Lyme disease and relapsing Babesioisi were able to discontinue treatment and remain clinically well for periods of observation of 6 - 23 months, following the completion of a finite course of treatment solely with Disulfiram. One patient relapsed and is being treated with another round of Disulfiram.
Patient 1 was hospitalized for psychiatric reasons during treatment. It has been reported that Disulfiram has occasionally been reported to cause psychiatric disturbance. Patient 1 didn't believe it was the drug's role, stating it was stress related.
Patient 2 had a syncopal episode ( loss of consciousness) requiring hospitalization for a concussion. It is believed it was a drug-drug interaction between Disulfiram and imipramine (tricyclic antidepressive).
Patient 3 suffered profound fatigue in the beginning of treatment, being unable to tolerate more than 125mg every other day. From January to April, doses were gradually increased, with April and May achieving full doses.(500mg). In November he still tested positive for Lyme and Babesia Microti.
A second coarse of Disulfiram was initiated in February 2019, starting slowly at 50mg every other day, with the intention to ramp the dose up over several weeks to 750mg/day, remain at that dose fir 90 days, then discontinue, then observe.
Patients 1, 2, and 3 agreed on Disulfiram 500mg/day for 90 days. Patient 1 and 2 weighed roughly 200lbs and treatment was successful, having appeared to maintain long-term remission. Patient 3 weighed 220lbs and suffered a clinical relapse of Lyme Disease after 6 months. A dosage adjustment has been made for his second round of Disulfiram.
Periodic surveillance labs were obtained, which included blood counts, chemistries, and urinalysis throughout treatment.
Disulfiram is generally safe. It has a long half-time, requiring one to two weeks for complete elimination from body.
Documented side effects include encephalopathy, convulsions, cranial and peripheral neuropathy, toxic optic neuropathy, irreversible injury to basil ganglia with permanent deficits, hypertension, drug induced psychosis, liver injuries requiring liver transplantation and death.
Drug Interactions;
Warfarin Phenytoin Barbiturates Opioids Tricyclic Antidepressants Hypo-glycemic agents Anti-histamines Benzodiazepines CNS stimulates Psychopharmacology Metronidazole Tinidazole Alcohol OTC products containing alcohol Avoid if allergic to rubber Not for use under 16 years of age
posted
bonnie, thanks for your post. I understand what you are saying but when you are in the situation I am you sometimes don't worry about the risks.
The LLMD in Naples, is that Dr. P the neurologist, because he is now retired and many years ago stopped treating for Lyme altogether? It was never his main interest anyway.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I totally understand. It is tempting. I'm sure everyone is thinking as you, me included. We have all been to hell and back and enough is enough. But. . . those side-effects are pretty scary. But we are a hardy bunch, same side-effects as the pharmaceuticals we take everyday. Yish, for get about it.
No, not Dr P. It's Dr S. He posts a lot of his research for free on-line, is always searching for new treatment protocols, adamant the mefical community isn't doing enough, says present treatment fails us.
I'll send you a pm.
Posts: 2977 | From Florida | Registered: Nov 2016
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