Discussion in ''Conditions related to ME/CFS' news and research' started by 5vforest, Feb 25, 2021.
Open access, full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7690415/
This is basically the latest and greatest research that exists for patients with long-term Lyme Disease / tick-borne infections.
As it's just a case report and retrospective chart review, it is hard for me to get very excited about it. This is the treatment "protocol", note that it consults of multiple drugs and supplements and is very, very involved:
It's hard to draw any real scientific conclusions from this article. But on a personal level, as someone who is infected with Borrelia and Babesia, I will probably ask my practitioner to prescribe me the exact same treatment as this trial because nobody is able to offer me evidence for anything else.
Thanks for posting this paper.
I have borreliosis and other tick borne infections. I've largely recovered via long term and ongoing antimicrobial treatment. I'm 95% recovered now and on daily cotrimoxazole (prescribed for multiple immune deficiencies) so I plan to keep on with this. If that wasn't the case I would be looking into this although I suspect that combined therapy will other antimicrobials might be more effective? Hard to know.
I would like to see more trials trying out treatments over longer term along with using objective outcomes such as exercise tolerance, neuropsychological testing, HRV, ability to work etc.
I've gone from severe ME type symptoms, often bedbound, housebound needing to use a wheelchair (especially to get up slopes) to working full time and hiking, open water swimming etc.
Migraine headaches still a pest.
It has taken 12 years to get back to this. Can't see that kind of care being open to patients anytime soon without better testing, tests that show ongoing infection (providing rationale for ongoing therapy) and evidence (from trials) that gives doctors the confidence to keep treating until their patients recover - no matter how long that might be
@5vforest I wish you all the best in your continued efforts to recover.
Yes. The problem with this article is that it is basically just one doctor saying “this is what I have been trying”. Which don’t get me wrong, is better than not publishing at all.
I also agree that outcomes are too subjective and likely to be biased.
My main disappointment with any Lyme Disease treatment studies is that because the testing is so poor, the patient population is likely to be very heterogenous.
I suspect the same is true with me/cfs studies until we have a biomarker.
Horowitz also has a reputation of being a “hype man”. I really respect the guy and would see him as his patient if given the opportunity. But sometimes you have to take his proclamations with a grain of salt.
It is really hard when you are poorly to read around and through the information, limitations, hype and so forth. A real nightmare. And generally the quality of the evidence is poor and shaky. Tough to do.
My philosophy was to:
I generally stuck with mainstream medication suggestions that had known side effects and complications to try and reduce risk
I tried one thing or make one change at a time. Not always practical
I tried to tolerate some reactions, generally to new meds, within reason as these often turned out to be the most beneficial longer term (e.g. Roxythromycin gave me back a lot of my brain function).
I gave new meds time to evaluate - 6 to 12 months really, if possible (finances and side effects)
After 9 to 12 months I tended to plateau which made me review but not always in a rush as it was necessary from physical and psychological perspective to keep myself bobbling along - new treatment was often a roller-coaster
I learned the hard way that trying to up dosages and get back to 'normal ' by pushing on with things pretty much always backfired.
My treatment seems to take the time it needs with currently available meds and ideas. Frustrating for me and I suspect everyone else. I think this demoralisation results in early withdrawal from treatment. And for many medics the idea of more than a few weeks of antimicrobials was beyond their comprehension, which is quite a psychological barrier for me to push through. Not having good, local medical care to discuss basics made it much harder. A nurse or GP will knowledge would have been worth their weight in gold
I learned to ignore the naysayers. Hard for me to do. Endless line of professionals and family whose sole aim appeared to be to discourage me in the most overt and rude ways while simultaneously having no better suggestions. Nor having the capacity to understand how debilitated and disabled I was. Nor having much empathy for the losses I had faced.
One thing I deviated from above was to give GcMaf a go. Helped me and appears to have altered my serum bicarbonate from low to the middle of the 'normal' range. Quite a change. Over time, 9 months I think, the effects taled off and I stopped the weekly treatment.
I hope you find treatment that works well for you and that you are supported with the whole caboodle. It's a tough gig.
Interesting! There seem to be a few new treatments like this around.
I’ve been on and off disulfiram for almost a year now and doing very well, but I still have to see if it stucks when I get off it.
Just remember, Dapsone comes with potential baggage. I seem to recall Hemolytic anemia possibly being one, for example. H suggests limiting treatment duration to,hmm, I don't remember. But not long. It's been my experience (personal and relayed) that some clinicians shrug off those constraints and just keep the Dapsone coming.
BTW, @5vforest, if you decide to take dapsone, and you develop hemolytic anemia, to what will you ascribe the anemia? Babs? Dapsone?
Dapsone has a half-life in terms of footprint, so that helps, but depending on how long you're on it, it could present with an interesting diagnostic dilemma.
I took it many, many months.
I have read that it has helped many, and should you go that route, I hope it helps you as well.
@Joan Crawford thank you for sharing your experience. Very interesting and glad to hear that it has helped.
@unicorn7 I am similarly glad to hear that you are doing well on Disulfiram. At least with that one, you know that in the past many alcoholics have also taken it for extended periods of time.
The trend with Horowitz seems to be that he's advocating higher doses but for shorter amounts of time. This appeals to me. With this protocol, you only take Dapsone for 8 weeks.
From what I remember reading, he has not seen any permanent damage from Dapsone. That is, all of the unpleasantness seems to right itself after a few weeks off the drug.
But that's the problem with a retrospective chart review, you don't know how many patients were on other antibiotics at the same time, or for longer durations.
It's simply a case report - don't think it means much to be honest.
The bar is quite low, yes.
One thing that I keep coming back to, as I refer to the text of this article (I am personally undergoing a similar treatment), is this:
Does this mean that there were additional patients who completed the same protocol, yet *remained* on antibiotics in the next year (presumably because they were still symptomatic), thus excluding them from this chart review?
I was sent this, posting it here in case it's of interest to anyone.
4th Annual  "Lyme Disease in the Era of Precision Medicine" Conference: Richard Horowitz
Effect of Dapsone alone and in combination with intracellular antibiotics against the resistant morphological forms of Borrelia burgdorferi, Richard Horowitz, MD
Also found this recent preprint from the same author on the same subject.
Efficacy of Short-Term High Dose Pulsed 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 Literature Review
Lyme disease and associated co-infections are increasing worldwide and approximately 20% of individuals develop chronic Lyme disease (CLD)/Post-Treatment Lyme Disease Syndrome (PTLDS) despite early antibiotics. A 7–8-week protocol of double dose dapsone combination therapy (DDDCT) for CLD/PTLDS results in symptom remission in approximately 50% of patients for one year or longer, with published culture studies indicating higher doses of dapsone demonstrate efficacy against resistant biofilm forms of Borrelia burgdorferi. The purpose of this study was therefore to evaluate higher doses of dapsone in the treatment of resistant CLD/PTLDS and associated co-infections. Twenty-five patients with a history of Lyme and associated co-infections, most of whom had ongoing symptoms despite several courses of DDDCT, took one or more courses of high dose pulsed dapsone combination therapy (200 mg dapsone X 3-4 days and/or 200 mg BID x 4 days), depending on persistent symptoms. The majority of patients noticed sustained improvement in 8 major Lyme symptoms, including fatigue, pain, headaches, neuropathy, insomnia, cognition, and sweating, where dapsone dosage, not just treatment length, positively affected outcomes. High dose pulsed dapsone combination therapy may represent a novel therapeutic approach for the treatment of resistant CLD/PTLDS, and should be confirmed in randomized, controlled clinical trials.
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