I had my phone consult today with Dr. H. in NY and he put me on this regimen. Of all of my past plethora of drugs, pyrazinamide has never been one of them. Any experience? Good? Bad? I've been ill for over 5 years now and hoping that this will be THE drug for me....
And, he brought up the possibility of going on IV...AGAIN! Ugh...it would be my THIRD IV regimen if we end up going that route!
Thanks in advance!
~tri
Posted by triathletelymie (Member # 26456) on :
Anyone?
Posted by marcholland81 (Member # 45458) on :
Pyrazinamide is being investigated by dr. Zhang from John Hopkins with the financial support of Lyme Research Alliance.
"Ying Zhang, M.D., Ph.D. Johns Hopkins Bloomberg School of Public Health A New Treatment Regimen for Persistent Lyme • Dr. Zhang has discovered a new use for Pyrazinamide (PZA), which for many years was used to treat tuberculosis. Dr. Zhang will assess the activity of PZA against “persisters,” Borrelia that become tolerant to antibiotics yet later rebound to start a new wave of infection. He will then test compounds singly, and in combination with PZA, to find an optimal treatment regimen for patients with chronic Lyme disease."
I would say there should be some reason to focus on this drug.
Posted by Lymetoo (Member # 743) on :
I've never heard of it. Keep us posted.
Posted by marcholland81 (Member # 45458) on :
Here some more info on the drug:
"Ying Zhang, MD, PhD, a professor of Molecular Microbiology and Immunology, has a hunch that pyrazinamide—a drug that has been used for more than 60 years to treat tuberculosis—might have some effect against Lyme disease. “It’s a very curious drug, but an amazing drug,” Zhang says. “Most antibiotics work only against bacteria that are growing, but pyrazinamide works against ‘persister’ tuberculosis bacteria that are in a dormant, non-growing state.”"
Mode of action of pyrazinamide: disruption of Mycobacterium tuberculosis membrane transport and energetics by pyrazinoic acid
"Antibiotics are generally active against multiplying bacteria, but are much less effective against non-replicating bacteria as in stationary phase or in biofilm. Pyrazinamide is exactly the opposite6 and represents the prototype of a class of new antibiotics that kills non-growing persisters more effectively than growing bacilli. " web page Posted by TNT (Member # 42349) on :
This sounds very promising! Triathlete, please keep us posted! This may be good for bartonella and brucella, too.
Posted by TNT (Member # 42349) on :
Don't know if this tidbit is helpful, but I just found it interesting:
Pyrazinamide-closely related to niacinamide- is derived from nicotinic acid.
Persisters? Absurd...no such thing. We better call him Dr.Z from now on.
Very interesting research...had never heard of the med.
Posted by CD57 (Member # 11749) on :
Tri-- what infection is he after with that combo?
Posted by triathletelymie (Member # 26456) on :
CD....Lyme....I think....
Posted by LymeCFIDSMCS (Member # 13573) on :
I'm curious how long you did IVs each time? And was it just Ceftriaxone/Rocephin or other drugs as well?? This new drug sounds really interesting. I'm a long-termer with bart too so it sounds like something that could be helpful for me, thanks for the info.
Posted by Rumigirl (Member # 15091) on :
triathelete,
How are you doing on the combo/new med?? It may be too soon to know, but I am VERY interested!!
Was it hard to get the med?
Any particular good responses, side-effects, herxes, stuff to watch out for?
Are you on any other meds for other pathogens? He may well not want to "muddy the waters."
I will be sending this info on to my LLMD and asking for it in my next follow-up. EXCEPT that I also need to keep up with Babesia treatment, so not sure if it is ok to add that in or not.
Thank you!! Please keep us updated. I certainly need a new approach!
Posted by Rhiagel (Member # 21880) on :
This is good news! Dr. Z was one of the researchers that discovered that daptomycin + cefoperazone + doxycycline eliminates ALL viable spirochetes in vitro.
Dap and cef do not readily cross the BBB, however.
OTOH, pyrazinamide is a small molecule and DOES PASS THE BBB, the bioavailability is over 90%, and it can be orally ingested! I anxiously await the results of Zhang's study on pyrazinamide vs. Bb.
Please let us know how the pyrazinamide combo is working out for you.
[ 04-26-2015, 07:44 PM: Message edited by: Rhiagel ]
Posted by triathletelymie (Member # 26456) on :
Hi Everyone!
I will keep you all updated, but, so far, I have seen no changes...no herxes, no improvement, nothing, which is pretty much what happens with me. But, having said that, it's only been a week. I only started it a week ago because I was battling a case of shingles (thanks to my basically nonexistent immune system!)! I am taking it once a day, along with rifampin and doryx.
LymeCFID - I did two bouts of IV antibiotics (and Dr. H mentioned to me at my last two visits that he may want me to go back on it again! )...one for 7 months, the other for 9 months. I did rocephin, zith and vancomycin, I think. I don't recall, for sure, though, as my lyme-induced dementia is pretty bad.
Sorry for not getting back to you all, about my pyro experience, but I've been pretty sick lately...with the shingles, lyme and co.
Posted by Rumigirl (Member # 15091) on :
triathlete.
Thank you for updating us.
I am soo sorry about the shingles---awful!!
It sounds to me like you could be helped a lot by IVIG, at least in terms of your immune system, and also if you have peripheral (or any other kind) of neuropathy. Which many of us do have.
It's not a magic bullet and needs treatment for the infections, too, but it the only thing that has kept me from having continual other infections, like shingles, etc.
PM me if you want info about the doctor I see who gets it authorized when others don't.
So he only has you on it once a day, that's interesting. It's different from the tuberculosis protocol dosing. I imagine he's being cautious.
I'll be curious to see how it goes for you with this new med as you go along. One week is not much to tell.
Feel better---if possible!
Posted by marcholland81 (Member # 45458) on :
Hi triathlete,
Thanks for the feedback. What dosages are you on for all meds?
Posted by HK (Member # 45290) on :
Dr H healed me 6 years ago so I would listen and follow everything he suggests.
He treated me with very high dose abx and then bicillin shots along w b12 shots until i reached recovery about 10 mo later, feeling 90 95 percent myself
Since I was feeling so fanstastic, silly, stupid me wanted to get out there and live, and so i declined his offer of iv to get me to 100% and have a better chance of being sx free . Biggest mistake of my life as I probably would not be enduring the relapse i am now if i had listened.
So I'm sure you'll get better, even if it takes multiple IVS. He IS one of the best in the world so i wouldn't question it. You're in good hands (:
Posted by tricia386 (Member # 29623) on :
Hey- Any update. He just suggested this to me yesterday.
Posted by triathletelymie (Member # 26456) on :
Update:
It's only been three weeks on this combo so far, but I think there may be some SLIGHT improvement. No improvement in brain fog/memory problems, however, unfortunately, which is my most problematic symptom. But, slight improvement in energy level....
Posted by unsure445 (Member # 15962) on :
Any indication of how long someone needs to be on this medication for persisters to be eradicated?
Posted by triathlongal (Member # 31684) on :
Dr.H. recently put me on this protocol because I keep relapsing. Been on for two weeks and do not see any change/herx ect.
Posted by triathletelymie (Member # 26456) on :
unsure -
Not sure...Dr. H put me on it for a month, with one refill. I have completed one month so far and into the first refill now. I have an appointment with him in mid-June. Still having slight improvement, it seems, though. Not great, but SOME improvement.
triathlongal - have you seen anything? Herx? Improvement?
Posted by Mrtanner69 (Member # 45915) on :
I am on rifampin, pyrazinamide, cefdinir. Currently in week 3, it's been one horrendous herx since day 2. Never had a reaction like this, hopefully it's worth it. Only 6 weeks to go!
Posted by marcholland81 (Member # 45458) on :
Thanks for the feedback Mrtanner.
Interesting to see that you have a cephalosporin in your protocol.
Posted by triathlongal (Member # 31684) on :
quote:Originally posted by triathletelymie: unsure -
Not sure...Dr. H put me on it for a month, with one refill. I have completed one month so far and into the first refill now. I have an appointment with him in mid-June. Still having slight improvement, it seems, though. Not great, but SOME improvement.
triathlongal - have you seen anything? Herx? Improvement?
Well I herxed so bad on this combo- from day one. I had been feeling really good w/ some lingering symptoms which I think was Bart since I never treated for Bart. Anyway, I could not tolerate this combo. Back on doxy/zythro/tindamax (plus herbs) till I stabilize then will slowly add in Rifampin.
How are you currently feeling on this protocol? What have been your lingering symptoms? Best, TG
Posted by triathletelymie (Member # 26456) on :
Well, everyone, I don't want to jinx myself, but I think that I may be actually improving! Even my brain fog, which has been my absolute WORST symptom all along, appears to be getting better...albeit VERY slowly! I hope and pray that this improvement will last and be the combo to kick this thing! I'm cautiously optimistic! It's been a LONG 5.5 YEARS!
I am back to playing tennis 2x/week again, running again (albeit SLOWLY and not TOO far), driving (not long distance yet, but hopeful that will come soon as well!), working full-time!
I've been on this combo for almost two months now. No herx, though, as I have never really had any herx reactions, just constant feeling crappy. But, it seems like a slow, VERY slow, improvement! I'm hopeful!
I see Dr. H. in two weeks, so, I'll have another report for you after I see him!
I have always thought that bart was more of my problem, too, because I never really had much joint pain and/or fatigue so, perhaps, it's the rifampin getting through as well!?
Posted by CD57 (Member # 11749) on :
Tri, I think this might be a bart combo, as both rifampin and pyrazinimide are TB drugs. bart is somewhat closely related to TB. I don't think it's for Lyme.
Neither of those meds outright kill bartonella, but may stop it from growing.
Posted by unsure445 (Member # 15962) on :
Up
Posted by Rumigirl (Member # 15091) on :
triathelete and anyone else on this combo,
How is it going now? Are you continuing on this combo, at the same dosages as before? Or did he decide on IV for you?
I'm overdue for a follow-up with my doctor and desperately need to target Bb and Bart, but also continue on Babs meds----to whatever extent I can tolerate all 3 at once.
I would like to ask my doctor for this combo, too, especially if you guys are getting good results with it.
[ 06-28-2015, 04:28 PM: Message edited by: Rumigirl ]
Posted by Rumigirl (Member # 15091) on :
up
Posted by SacredHeart (Member # 44733) on :
So this is an ancient post. Any word on any of this?
Posted by Rumigirl (Member # 15091) on :
Frustrating, I've PM'd triathelete, but no response.
![[Frown]](frown.gif)
![[bow]](graemlins/bow.gif)
![[Smile]](smile.gif)
Not great, but SOME improvement.