That's a herx reaction for me (both lymph nodes behind my ears swell). I get the strongest swelling from antimalarial treatments....
Girlie, have you tried this version of LOLA? it is a lot cheaper than the other one: https://www.amazon.com/L-Ornithine-L-Aspartate-BulkSupplements-Concentration-Kilogram/dp/B07NQXWWXJ/ ...
One thing I heard is that you want to start it slowly. It's a liquid, so you can titrate. If you have trouble with eating, it might be a good one for you since it seems to mostly affect mast cells in...
I just think you can't extrapolate that long term abx don't work from this one patient's autopsy results. Look at her treatment history, she was given monotherapy intermittently with minocycline and...
Shoot I'm sorry to hear that. I think trying to roll pathogen load back with gentler agents before jumping in to heavier duty stuff is something that could also be worth considering. It's tough...
From what I've heard the quinolines are great drugs for babesia but as Girlie posted can torch some people (in a very bad way). There's a new one being used for babesia right now, tafenoquine, been...
Hey JovaLyme, at this point I think there are several compounding pharmacies that are providing it. I think Hopkinton Drug is one of them. If you are feeling precarious, please consider an incredibly...
So glad to hear that Recovering Lymie!!! fingers crossed, wishing you continued success with the therapy!! For those with bart, I think methylene blue (per Zhang's study) is a very interesting...
They don't know yet regarding DSF's mode of action(s). Maybe disrupting metal ion channels of the pathogens, but that is very speculative (this is how it works against malaria for instance documented...
I think for those of us with heavy CNS involvement (neuro symptoms) we need to start treatment very very very cautiously and carefully, the flares can be massive (Horowitz says this drug has given...
Hey JovaLyme, I've basically been on all the frontline bartonella drugs, including pyrazinamide. Also pretty much every herbal bartonella antimicrobial. I never got much flare or improvement with...
Methylene blue is quite interesting, Zhang had a study this year showing it has very good effect on stationary phase bartonella (in vitro). My doctor suggested this could be an add-on with the...
Imo the allergic response and MCAS are one and the same thing :) I've had a lot of success with abx, brought me back from the dead, so I don't pooh-pooh them myself, although they aren't right for...
JovaLyme, the issue is not all of those drugs have great penetration plus the pathogens sometimes find workarounds to avoid the medication(s) (dormancy, shape-shifting, etc). Borrelia is a very...
My doctor suggested methylene blue as an add-on to my disulfiram protocol. Right now disulfiram is giving me more than I can handle, so I haven't added it in. Plus my bartonella issues are largely...
I'm very curious to see how disulfiram pans out given the success of the in vitro and in vivo studies where the borrelia infection was cleared. I'm sure we will learn more as to what this agent is or...
Great share. Ivermectin flared all my babesia symptoms hard. At the time, when I had a much higher pathogen load it was the strongest med I had taken up to that point. For some of us it may be a very...
Charlie always comes in with incredible comments. Excellent, always appreciate reading your posts. Just sharing my experience: the persister agents that I used, dapsone and pyrazinamide were ok but...
Could even dose more conservatively, like 50-60mg 1x per week, to really hedge and be careful. There are patients doing this. As regards autoimmune, I believe all autoimmune symptoms are a downstream...
We are at a very important point for lyme patients, especially the ones who've been struggling with these illnesses a long time. Disulfiram, azlocillin, methylene blue, gallium nitrate... there are a...
Thank you for your kind words JovaLyme, really appreciate it! These battles are something else. I really believe in patients supporting one another. And I saw you posted those wonderful quotes in the...
Jovalyme, please feel free to email me throughout if you are needing support and or any help. Really recommend watching the Dr Kinderlehrer interview on disulfiram treatment and his approach, it...
Imo there is a lot to be excited about, disulfiram, azlocillin, likely more promising agents to come (even things like gallium nitrate and methylene blue for bartonella)... patients with late stage...
Can confirm! this is why you can usually crush borrelia like nothing with doxy when you hit it right after it's been inoculated in the body (and before it has truly disseminated). But once it's in...
yes, DSF has certainly improved my baseline symptoms (which are pretty much ALL neuro). But as with any treatment, in my case it requires extended use over time to notice symptom improvement (ie push...
Do those symptoms increase when you've used effective antimicrobials in the past? if so, there's decent chance it would be a flare response with DSF (as it hits both borrelia and babesia). Doesn't...
Frankly, the usefulness of the FB DSF groups is quite excellent (even if I consider FB itself to be... eh I won't use the words). You could just create a sort of throwaway FB account and then use it...
Yes, some finding great success. Others are crash/burning from what I think are incautious and or overly aggressive approaches with the therapy. Very careful ramp-ups are required, especially for...
That's fantastic! Imo we should be thrilled for anyone who finds success with whatever modality ends up working for them. Abx helps some people, doesn't help others (and we should be open to hearing...
Please do take care. Many patients are finding that dosing beyond the 250mg threshold is leading to a lot more problematic issues. So being conservative and careful is quite advisable imo. The Dr...
interesting, do you think this can help with ANS symptoms, if the diaphragm gets locked up and feels like we can't get a deep breath (ie, when one gets air hunger type symptoms)? Def need to try your...
So sorry to hear that. Many false alleyways with this stuff. Can take a lot of trial and error to find our way in the healing path. Never give up, that's my view :) have read a lot of inspirational...
The disulfiram facebook groups are invaluable as sources of info and support (imo). They've been super helpful for me as I've been going on this disulfiram treatment journey!...
Hi jb1994, actually that would be great, even secondhand recommendations would be excellent! would it be possible for you to email me some of the names? (my email is in my profile)...
Hi guys, I'm looking a LLMD/LLND recommendations in the Los Angeles area. Is anyone here working with someone they really like and can recommend? We'd like my sister to be properly evaluated for the...
How to cope? I look at these people and think, you know what, your years of experience and reams of diplomas didn't serve me one bit of good, in fact, you turned me away from the proper diagnosis...
Fascinating, very intriguing hypothesis. The 20% originally serving as potential sentinels to toxins/toxin environment/exposure......
Link not working?...
Glad to hear that many of your GPs are open and understanding (and willing to admit when they don't know things). Much as I grouse, I'm lucky as well, my GP (who truly is excellent), was initially...
Great share Charlie55, hadn't seen that case report it's a good one. Would be great to build a database of studies. Could have different sections. Studies on pathogens/Alzheimer's, pathogens/MS, etc....
Astroman, those are some good points, "highly intelligent idiots." I also grant that some of these people are fairly brilliant on their own merits, but in spite of that they are locked into a brutal...
100%, and an ability to master preapproved formulaic conceptual frameworks. There are brilliant minds in the medical fields, but on average many are glorified paint by numbers thinkers. Great for...
so many of these MD practitioners cannot begin to break out of their boxes to take even the first step in conceptualizing the possibility that chronic infections might be playing a role in...
My endless level of desperation (how in the heck do I fix these intractable, constant hell symptoms???!!!) has driven me to endless amounts of research and efforts to figure it out things as best I...
I really like it, mixing intermittent fast timeframes of between 16-24hrs, usually 17-20 on average. I'm also doing a lower carbish diet with no grains (no grains is a new implementation, left knee...
You ever tried gallium nitrate? Heard some patients have had success treating tough bart cases with that one as well (methylene blue as well plus has the zhang in vitro study suggesting...
Steelofgreens, have you taken antimicrobials before the disulfiram? if so, did you notice any particular type of herxes or flare patterns? For me, I've taken a wide enough range of antimicrobial meds...
Thank you Charlie55!!!! I really think our thinking and hypotheses on a lot of these things really aligns quite closely!!! Georgia Hunter: Thanks so much!!! oh yes, in my view, the immune system is...
Thanks for keeping us posted!!! rooting for you, wish you good luck and lots of success!!!...
Charlie55, there are so many things to say to your wonderful comments. I always appreciate your in depth commentary, and my thinking aligns with sooooo much of it. I will try and get a bit more of a...