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
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
| IP: Logged |
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
| IP: Logged |
posted
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."
"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 pagePosts: 30 | From Netherlands | Registered: Mar 2015
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
This sounds very promising! Triathlete, please keep us posted! This may be good for bartonella and brucella, too.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Don't know if this tidbit is helpful, but I just found it interesting:
Pyrazinamide-closely related to niacinamide- is derived from nicotinic acid.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
| IP: Logged |
posted
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.
Posts: 929 | From Massachusetts | Registered: Oct 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
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.
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.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
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 (:
-------------------- Back At It Posts: 203 | From NJ | Registered: Feb 2015
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Hey- Any update. He just suggested this to me yesterday.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
| IP: Logged |
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....
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
| IP: Logged |
posted
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.
Posts: 151 | From North East | Registered: May 2011
| IP: Logged |
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?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
| IP: Logged |
posted
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!
Posts: 1 | From Madison wi | Registered: May 2015
| IP: Logged |
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
Posts: 151 | From North East | Registered: May 2011
| IP: Logged |
posted
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!?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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 ]
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
up
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[bow]](graemlins/bow.gif)
![[Smile]](smile.gif)
Not great, but SOME improvement. 
Printer-friendly view of this topic