Anyone taken or know of a Pyrazinamide protocol?

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Sheeks175
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Date Joined May 2016
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   Posted 7/9/2017 12:35 PM (GMT -6)   
Has anyone taken or know of a pyrazinamide protocol? What antibiotics do you combine it with? Pulsed or no? I believe Dr. Horowitz wants patients to take it with rifampin, which is interesting because both of those drugs have a high risk of elevating liver enzymes. I was wondering if it can be taken with anything else.

Ex: Pyrazinaminde, zithro, doxy. Pulse ceftin and tindamax.

I read about it in Dr. Horowitz's new book. It is used against persisters similar to dapsone. He seems to favor dapsone because you can only take pyrazinamide for two months otherwise you have a chance of developing resistant bacteria.

It is typically used to shorten the duration of TB treatment. After it's introduction to TB treatment, the treatment duration dropped from 24 months down to 6 months.

If I were to consider one of these protocols in the future I don't know if I would be able to take dapsone since I am sensitive to Bactrim (Sulfa sensitive).

summer16
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Date Joined Jul 2012
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   Posted 7/9/2017 1:00 PM (GMT -6)   
I have not heard of it. Hopefully, someone will drop by with some info

Patty

Girlie
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   Posted 7/9/2017 1:22 PM (GMT -6)   
I read on the Facebook page that for one patient - it was combined it with Plaquenil, mino and Rif,





/m.facebook.com/drrichardhorowitz/posts/1075181042570693
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Sheeks175
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Date Joined May 2016
Total Posts : 284
   Posted 7/9/2017 4:37 PM (GMT -6)   
Interesting Girlie. Sounds like he put her back on dapsone after her course of PZA.

sebreg
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Date Joined Jun 2015
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   Posted 7/9/2017 7:53 PM (GMT -6)   
As a matter of fact I will be starting the pyrazinamide protocol when I get back from traveling at the beginning of August. I do not think it is pulsed. I've been on dapsone for a while and we are going to rotate to pyrazinamide. I will make sure to post updates and info about my experience, from what I understand you have to have very close monitoring with this medication (weekly blood tests).

Sheeks175
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Total Posts : 284
   Posted 7/9/2017 8:00 PM (GMT -6)   
Sebreg, very interesting! How has dapsone treated you so far? Yes please keep us updated. I would love to hear about your experience, dosage, and other meds you will be taking along with it. Do you have co-infections?

sebreg
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   Posted 7/10/2017 11:09 AM (GMT -6)   
Dapsone has been good. I've been on it for about 9 months, it def made me herx a lot in the beginning, it has helped but it isn't the golden ticket (nor did I expect it to be), but it is a good part of the puzzle for me. I think it is all about figuring out smart rotation strategies in my case! I certainly don't regret taking it and I think it has been very helpful but I do think I've reached diminishing returns and that is usually when I think one needs to rotate.

I have both lyme and bartonella, and possibly occult protozoal infection (I don't think it's babesia but I can't be sure, I tested positive for protomyzoa rheumatica but I don't know if this causes symptoms in my case, it's so hard to gauge causality and parsing what infection is there and which one is causing what!). So I've been on dapsone and have been combo'd with rifampin (then switched to rifabutin some months back), pulsing cefdinir, and also on doxy. Doc suggested I try fluoroquinolones since I do think bartonella is the main driver of my health issues, but this is a class of drugs whose side effect profile really intimidates me (I've also heard a lot of horror stories from other patients).

I also incorporate and have incorporated a lot of herbal treatments which are quite effective (zhang, buhner, cowden, woodlands essence combo herbs).

I will absolutely post the pyrazinamide protocol once I have more info, I know it will be combo'd with other stuff and I think it may be many of the same meds I'm already on but I'm not 100%.

I'm of the thought that as a general rule of thumb the longer one has had the illness and the more severe the symptoms one has experienced then the degree of difficulty for recovery is increased, a deeper hole to climb out of if you will. I'm sure there are exceptions to this! and in the more severe cases I think recovery is absolutely possible, just often tricky, involving a lot of trial and error and can take a while with lots of persistence! At least it is proving so in my case, I've likely had the infections since I was a kid (mom was telling me just the other day that I had a weird rash as a child that no one knew what it was, we wonder if this might have been when I was inoculated with these infections). Growing up I was lowly symptomatic (lots of weird random health things that make sense now) but fully functioning until I got mono at 24 when it all went kablooey (bedridden and severe constant pain for many years)! Then it took 9-10 years to finally get proper diagnosis, yeesh!

bluelyme
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   Posted 7/10/2017 6:32 PM (GMT -6)   
Sheeks i too have a sulfa sensitivity and wounldnt risk dap.but alinia has been really tasty ..its hits erythang even viruses

sebreg
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Date Joined Jun 2015
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   Posted 8/3/2017 10:01 AM (GMT -6)   
I took the first pyrazinamide dose yesterday. Yowee, it def made me herx (my herxes tend to come on quickly, it took about 30min for me to sense it building) and I started getting worried because the classic flare symptoms came on very very very strong kind of like a freight train: tingling, neuropathy, burning lymph nodes. It made me nervous that the herx might spiral out of control as I have had some terrible terrible herx episodes in the past, one of which triggered a long herx deathspiral that took me 8 months to recover from (previous doc frontloaded too many antimicrobials at once and pushed me to stay on all of them, obviously I shouldn't have listened and gone with my gut). The pain from that med-induced herx made me suicidal in that period. So I have a bit of PTSD on that issue! But I took a lot of glutathione, took it easy and this morning I feel better and the herx has subsided although I am a bit exhausted. My intuition based on the herx, which honestly felt very impressive, is that this is a strong drug and it is hitting the pathogens square in the jaw. It may have some activity against bartonella, and I really think this is my main driving issue at this point.

I cycled off the dapsone about 6 or 7 days ago. It was weird because I'm honestly much much much better, but the paradox was I still felt tired, a general smothering fatigue where I was missing an ability to go into any higher gears. It was starting to make me quite worried, would I ever recapture this energy? was it the illness, meds, getting old that had caused my energy to disappear? How come if I was feeling overall better, symptoms were much reduced, how come I didn't have energy and had even less energy than at periods where I was much sicker?!

As it turns out the dapsone was causing some anemia, and from what my doc was saying it could be the disparity between my usual levels and the dapsone-induced levels that was causing this fatigue. I certainly felt better off the dapsone (it has been a very effective drug for me, but I had plateau'd), and once I got off it I started feeling that energy I had been missing. It was reassuring as I had started getting worried, that spark/energy is something I love feeling but also need in general to get anything done, and without it I sort of felt like a ghost, an empty shell of myself.

The thing that kind of sucks though is that the pyrazinamide can also cause anemia and fatigue. Argh!!! but I don't think I will be on it a long time (2 months so long as blood levels remain relatively ok). If it can help me on the health journey I am willing to try it out, it has promise although it also has risks, but having weighed the decision worth it if it can possibly help me root out some of the remaining pathogens. Some of this last % of pathogens might be the hardest to knock out, the most entrenched, the toughest, most resistant? I feel I have to reach deeper and deeper to find the right things that can get to these remaining suckers (and I do think if possible in my case it is important to try to knock them out, I know there are other treatment theories based less on killing the pathogens but in my case I think at this point it is still one of the important tactics in my quest to regain health)...

Post Edited (sebreg) : 8/3/2017 9:06:23 AM (GMT-6)


Girlie
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   Posted 8/3/2017 12:27 PM (GMT -6)   
Yay for the improvements on the Dapsone, sebreg!


Did you treat with the 'conventional' antibiotics for quite awhile before trying the Dapsone?


I hope the pyrazinamide gets you to full healing. What are you taking with it?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Sheeks175
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Date Joined May 2016
Total Posts : 284
   Posted 8/3/2017 2:57 PM (GMT -6)   
Thanks for the update Sebreg. So awesome to hear about the progress you are making. I second what Girlie said. I want to know what antibiotic combination you are taking with PZA. Yes, you should only be on it for 2 months from what I hear. That is the same with using PZA to treat TB.

The fatigue you are feeling definitely can be related to anemia - low iron. Before I got sick I was training to qualify for my pro license in long distance triathlon. Anemia can be a side effect from doing too much endurance based exercise, so taking a slow release iron supplement is common among runners, cyclists, and triathletes. I took 2 pills a day and my iron was still on the low side when I was training hard. I didn't notice too much fatigue from it, but if it gets really low you can definitely notice fatigue. My lowest level was 44 back in late 2014 from exercise.

In fact, my brother coaches runners, cyclists, and triathletes. A young female client of his was complaining of fatigue on her first appointment with him. He suggested to the mother that she get her iron levels tested. Turns out they were really low, and once she started supplementing her fatigue went away!

sebreg
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Date Joined Jun 2015
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   Posted 8/3/2017 3:05 PM (GMT -6)   
Hi Girlie! thanks so much!!!

Yeah I've taken quite a few of the more conventional antibiotic protocols, coupled with various herbal protocols. I've come a heck of a long ways on all of those, but to be honest I still have a little bit to go and am trying my best to drive a stake through the heart of this thing. I do feel agonizingly close. I wish I didn't have to go so far out on the edge with such strong drugs, but knowing the risks I've also experienced many tangible benefits hence my continuing pursuit of this angle. And given how much these diseases have put a wrecking ball to my life I'm willing to take certain risks to attempt to minimize and neutralize them. I consider antibiotics to be an inelegant and potentially risky solution but am grateful for what they have done for me so far. Hopefully everything goes ok as I keep proceeding because obviously there are always risks.

So right now the pyrazinamide is combo'd with doxy, rifabutin, and so long as all goes well will be adding in pulsed azithromycin. Another antimicrobial I'm taking is grapefruit seed extract. I'm also on stevia from nutramedix and biocidin. In the 2nd month there is consideration to rotate in a quinolone (can't remember which one) and replacing the azithromycin with that. I know this is a bit of a scary drug class and I'm still thinking about it but I think it would only be for 1 month, and my magnesium intake would be upped and also add in vitamin c supplementation. Doc says these supplements can help decrease chances of certain side effects.

Doc has currently added several extra supplements for me to take because pyrazinamide is very hard on the body (liver, kidneys, blood, etc). There is a hepa product from Zhang and also a liver protect formula. If it is of interest just let me know and I can get you actual product names. I'm also on some other detox things like resveratin and alamax and the usuals like glutathione, milk thistle, etc.

sebreg
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Date Joined Jun 2015
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   Posted 8/3/2017 3:20 PM (GMT -6)   
Sheeks175 said...
Thanks for the update Sebreg. So awesome to hear about the progress you are making. I second what Girlie said. I want to know what antibiotic combination you are taking with PZA. Yes, you should only be on it for 2 months from what I hear. That is the same with using PZA to treat TB.

The fatigue you are feeling definitely can be related to anemia - low iron. Before I got sick I was training to qualify for my pro license in long distance triathlon. Anemia can be a side effect from doing too much endurance based exercise, so taking a slow release iron supplement is common among runners, cyclists, and triathletes. I took 2 pills a day and my iron was still on the low side when I was training hard. I didn't notice too much fatigue from it, but if it gets really low you can definitely notice fatigue. My lowest level was 44 back in late 2014 from exercise.

In fact, my brother coaches runners, cyclists, and triathletes. A young female client of his was complaining of fatigue on her first appointment with him. He suggested to the mother that she get her iron levels tested. Turns out they were really low, and once she started supplementing her fatigue went away!


Oh that is so awesome that you were training for professional triathlons!!! I'm a bit of a fitness nerd myself but obviously had a bit of a detour with this health stuff as well. I relish any opportunity to bike, go to the gym, and after this long and winding health journey I truly appreciate the luxury and privilege of using my body for physical endeavors. Regaining this aspect of my life is a huge motivator.

I wasn't familiar with athletes, especially endurance often needing to rely upon slow-release iron supplements, that is very interesting thank you for sharing!

With the dapsone I was on various supplements to counteract some of those issues, but I think given the strength of the drug and its effects on my system one can only temper the side effects a certain degree but not necessarily fully avoid them unless drug is discontinued. Such was the case for me, but I'm sure there are various manifestations patient to patient and some will do better and some will do worse with those issues.

Sometimes I have to laugh at the giant irony (I didn't even use this word with the intent of being punny until I noticed it when I was rereading my post!) and absurdity of it all, I used to hate even the idea of taking an aspirin back before I got sick from lyme/coinfections. And here I am, having pretty much shamelessly sampled any and everything at the pharmacy (not to mention the countless supplements and herbal medicines). I was talking with my pharmacist yesterday (asking what I should keep an out for in terms of side effects with PZA), and I asked if she'd ever filled this script out for any other patients. I found out I had the dubious distinction of being the first person she's filled a pza script for (I had a sneaking suspicion that might be the case but had to ask/confirm out of curiosity)! Anyhow I told her it was a great honor and we both laughed at that.

Post Edited (sebreg) : 8/3/2017 7:04:11 PM (GMT-6)


Rikky1
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Date Joined Jun 2015
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   Posted 8/3/2017 5:38 PM (GMT -6)   
thanks for the update seberg.

i'm about to embark on the journey of hitting persisters/bart via dapsone and also probably rifabutin and alinia with Dr. J in DC. I've done 2 years of various antibiotics/anti-malarials and now after starting with Dr. J 5 months of more targeted/consistent babesia protocol.

i have lyme/babs lab confirmed and probably bart and its believed bart is my main symptom driver with babesia blocking much progress against it. i love what dapsone and alinia bring to the table. i've been on rifabutin/mino/bactrim and i did make some good progress.

i see Dr. J next week going to mention the PZA curious his thoughts because the first couple of times i've seen him he talks about Dr. H and him like some one upsmanship contest with innovations in this space. it's kind of funny to me.

speaking of persisters someone else who sees Dr. H said that bactrim is used to hit persisters. i've been on that over a year so not sure what its doing or if i even have persisters but Dr. H thinks that they are one of the main reasons for chronic infection after lots of treatment.

Sheeks175
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Date Joined May 2016
Total Posts : 284
   Posted 8/3/2017 6:46 PM (GMT -6)   
Rikky1 said...
thanks for the update seberg.

i'm about to embark on the journey of hitting persisters/bart via dapsone and also probably rifabutin and alinia with Dr. J in DC. I've done 2 years of various antibiotics/anti-malarials and now after starting with Dr. J 5 months of more targeted/consistent babesia protocol.

i have lyme/babs lab confirmed and probably bart and its believed bart is my main symptom driver with babesia blocking much progress against it. i love what dapsone and alinia bring to the table. i've been on rifabutin/mino/bactrim and i did make some good progress.

i see Dr. J next week going to mention the PZA curious his thoughts because the first couple of times i've seen him he talks about Dr. H and him like some one upsmanship contest with innovations in this space. it's kind of funny to me.

speaking of persisters someone else who sees Dr. H said that bactrim is used to hit persisters. i've been on that over a year so not sure what its doing or if i even have persisters but Dr. H thinks that they are one of the main reasons for chronic infection after lots of treatment.


Rikky do you see Dr. J himself? Is it possible for new patients to see him? I've been considering a new doctor for the last couple weeks and have thought about going to see him or one of his PA's. Do you recommend him? Have you made decent progress?

sebreg
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Date Joined Jun 2015
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   Posted 8/6/2017 10:16 AM (GMT -6)   
Today is going to be my 5th dose of the PZA. I can tell you this stuff is strong! but def working, I'm herxing quite a lot, mostly the usual: fatigue, headache, lymph node pain/burning behind/under ears. So of course detox detox detox! and none of these symptoms are quite as intense as the earlier parts of my treatment journey, because back then my base symptoms were so much worse/intense/crushing and adding the herxing on top of it would always amplify things to the highest agonizing difficulty. Symptoms are so much better now that I only need to deal with herxing and not the heavy weight of regular symptoms that I felt perpetually yoked to, this fact I think makes this latter part of my treatment process/journey more manageable. And I feel so agonizingly close to finishing this thing off and that has me really excited overall.

And I don't mean to get ahead of myself, PZA is a hell of a strong drug and tough on the body. I have my first labwork in a few days to make sure my body is handling it and to check if I can keep staying on the drug. Which is not a guarantee.

I came across this post last night, mentioning that about 8% of Horowitz's lyme/coinfections cases are most difficult to treat. /lymewhisperer.com/2015/12/13/kripalu-closing-in-on-the-8/

Sadly I think I'm in that 8% but I can confirm that dapsone has been very helpful and PZA has the potential as well to really help me (coupled with other proper antimicrobials/supplements). It has been such a long, difficult, ridiculously punishing journey that the prospect of recovery feels almost surreal, but I feel it is possible and I feel it is close. It has taken everything I have, mentally, physically, emotionally to get to this point. I sense I'm in the closing out stages, and am doing my best to close out the disease by attempting to drive a stake through the heart of it (I'm of the opinion that if you can finish it off as best as you can when the opportunity is there it can lessen chance of relapse down the line, just don't want to self-immolate either!). If my body can keep managing these meds then I feel I have a clear pathway to doing it. If things don't work out with this then we will have to improvise something else but I do hope this works out!

Like always, I wish I could have definitive answers on what is the main thing driving disease for me, and what is the main thing that PZA seems to be so effectively hitting in my case. I asked my doc if they thought PZA hit bart since it is intracellular drug, and they said yes they think so. I do also have lyme, but I don't know, the bart seems to be more manifest in my case but no doubt prob some synergy going on between all these infections. But I honestly suspect bart is my main driving infection, and it has been entrenched and severe and I've had it a heck of a long time. Truly epic trying to root this thing out, it is honestly mind-blowing and I'm not sure many outside of this forum could grasp the faintest shadow of comprehension on the magnitude of these diseases or the inordinate herculean difficulty they represent for some of us. I certainly doubt I could have any level of understanding this thing if I didn't go through it (not that I even really understand it anyways!).

I certainly didn't make the decision to take these meds lightly. Thought long and hard. I feel I've run through many of the more conventional treatments for lyme+, many have been extremely helpful and been part of the process to get me to this point of recovery but they haven't brought me to remission. A remission which I 100% believe is possible. I do think these extra meds have potential to get me there, or at least be part of the process to get me much closer, time will tell. As always every patient has to gauge potential benefit/risk of the therapies and I know quite a few people would choose not to take such meds due to the risks and I completely understand that. To me I would always choose to exhaust the safer more conventional options (I use conventional loosely, to include abx, herbals, etc), then if one is still manifesting disease, if your disease has greater intransigence and is still significantly impinging on quality of life, that is when you consider some of these other pathways (if they are available to you, and in this respect I'm very grateful and privileged to have access to this opportunity). There are also other treatments like hyperthermia/abx combo in Germany, ozone, things of that nature that do intrigue me. Personally I chose to go this route b/c I trust my doctor (not blindly though!) and there is slightly more track record with some of these antibiotic therapies even though I find them to be an inelegant solution dragging some serious risks along with them.

Post Edited (sebreg) : 8/6/2017 9:33:15 AM (GMT-6)


Girlie
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Date Joined May 2014
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   Posted 8/6/2017 11:41 AM (GMT -6)   
Thank you, sebreg for sharing all this with us.

I do hope this is what brings you to remission. I'm rooting for you!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
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Date Joined May 2014
Total Posts : 33785
   Posted 8/6/2017 11:49 AM (GMT -6)   
Sebreg - Is the Dapsone generally prescribed prior to the Pyrazinamide?

...but you go off the Dapsone..when the P is added in?

(are they ever taken together?)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sebreg
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Date Joined Jun 2015
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   Posted 8/6/2017 11:53 AM (GMT -6)   
Girlie said...
Thank you, sebreg for sharing all this with us.

I do hope this is what brings you to remission. I'm rooting for you!


Thanks so much Girlie! and I'm rooting for you!!!! we got this smile

And I do feel it is so important for me to share my experience as I know not too many have tried this protocol/drug. I'd like to give as much information from my experience in case it can help other patients (regardless of whether my experience ends up being good or bad, hopefully it can serve a purpose as one anecdotal story amongst many for patients to consider). Hopefully those of us on these more out of the box/newer protocols can report back our experiences, I think this is important because it can be one more piece of info that might help other patients evaluate treatment options. So if anyone ever has any questions please feel free to ask or contact me.

Personally I learned so much by reading other patient experiences, mostly on this board but also on a few other boards and sites online. They were invaluable for me, allowing me to figure out strategy, options, better understanding of my own health issues. Heck stumbling onto this board is what allowed me to nail my diagnosis via the help/guidance of other forum members (which doctors had missed for 10 years!). Without sites like this I am scared to think about the situation I'd likely be in!

sebreg
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   Posted 8/6/2017 12:04 PM (GMT -6)   
As far as I understand the two are not taken together, as they are both heavy duty and need to be managed carefully. I'm not 100% in the sequencing of these drugs, but from my readings it seems that Dr H goes with dapsone therapy first before he moves on in trying pyrazinamide. I'm just guessing but the reason may be that as much as dapsone has side effects pyrzinamide might be the riskier drug of the two? or maybe he just finds dapsone more effective so that's the one he goes with initially? or it could be a combo of those factors? I will try and read up on that and see if I can find the answer. Dr H is usually pretty good with sharing and explaining his methodology and thought process. I can always ask at my next appointment if I don't find the answer online.

Dr H had me cycle off the dapsone, was off for about a week and then started the PZA. We are doing blood tests 1x a week the first two weeks, and if all checks out then it goes to testing 2x/month. Normally this PZA protocol is just for 2 months. I was on the dapsone protocol for about 8-9 months but honestly hit a plateau after a while. In the end I think it was a good drug for my case, the anemia as it turns out was obnoxious, but still worth it for me all things considered. Given the stickiness of my infections I never expected one drug to fix everything, so my expectations were ballpark correct on dapsone. It helped, not remission, but did some heavy lifting so it fulfilled my expectations. I think for these latter stages of treatment in my case I have to find therapies with a very long arm and powerful ability that increases potential of nailing the more intransigent entrenched higher hanging pathogen fruit!

Girlie
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   Posted 8/6/2017 12:34 PM (GMT -6)   
sebreg - have you been with Dr. H from the start of your diagnosis, and treatment?

Have you been able to work (hold down a job) throughout your treatment (from the beginning...up to now?) - been fairly functional throughout? (I'm trying to remember what you've posted along the way)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sebreg
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Date Joined Jun 2015
Total Posts : 1012
   Posted 8/6/2017 12:46 PM (GMT -6)   
I've been with Dr H about a year and a half now. Before that I'd seen two docs who worked with me on the chronic infections. First was Dr F in Scottsdale. It is kind of a long story, I was misdiagnosed for a heck of a long time. I got to Dr H after my last doc (one after Dr F) almost killed me, he was so aggressive and pushy with treatments that it triggered something like a herx deathspiral that lasted for over 6 months and I couldn't get out of it. That's when I finally came across Dr H who helped stabilize me which took 3-4 months and then at that point I was able to start antimicrobial therapies again. I've seen the most improvements with Dr H, by far.

I was able to work from home for a little while but honestly it was incredibly hard and I was incredibly limited and my quality of life was terrible, I still had constant pain and could only function very marginally. Since I've been treating I haven't been able to work as the treatments really do fatigue me a lot. I'm coming from what I consider a pretty deep hole, I was bedridden and in constant pain for many many years. But it is like night and day when I compare to previous times, and I think I'm going to be able to get back to work quite soon and this prospect really excites me so much! I get impatient, but I consider regaining my health priority #1 and I want to do whatever it takes. I'm lucky to have supportive family that have allowed me to take time to just treat and try and get better. Would not be here today if it weren't for them and their support.

Sheeks175
Regular Member


Date Joined May 2016
Total Posts : 284
   Posted 8/7/2017 12:08 AM (GMT -6)   
Sebreg - Thanks for the update! Let us know how your blood work looks... what do you have to look out for on your blood panel while on PZA? What supplements are you on while on PZA to combat the side effects? I am so glad to hear that you are nearing a remission! I coudn't imagine what it would be like to be bed bound for years and to get to a point where you are thinking about how close remission is. That must be bitter sweet. It really sounds like dapsone and PZA are game changers.

I was reading a post on facebook about Olivia... a 12 year old girl who got lyme and struggled to get a diagnosis. Dr. H just put her on dapsone! It's is sort of comforting to know that he feels confident using dapsone on a child. Makes dapsone and PZA seem less scary.

sebreg
Veteran Member


Date Joined Jun 2015
Total Posts : 1012
   Posted 8/7/2017 8:21 AM (GMT -6)   
Hi Sheeks175! absolutely you're welcome! I will certainly keep updating. So from what I understand PZA can be hard on multiple organ systems, including liver, kidney, blood. So most of this can just be checked via labwork. Dr H already had me on quite a few detox products (lip. glutathione, NAC, ALAmax, resveratin, etc/I can give full list if you like just let me know!), but added in two more for PZA: Zhang's Hepa F. No2 and Liver Protect Xymogen brand.

I didn't realize Olivia was on the dapsone protocol! I'm going to check her fb page to see her updates, been a while since I've checked in. I hope she is seeing improvements. The thing is I do think these are heavy duty drugs but Dr H does a good job in managing his patients and keeping them as safe as possible. He is a smart guy, out of the box thinker, and he doesn't take unnecessary risks even if he resorts to aggressive therapies at times. I have a high level trust in him, so this makes it easier to pursue such protocols and drugs, of course there are always risks no matter what no matter how good one's doc might be! but if you have a good doctor they can have a higher chance of successfully threading the needle on this stuff I think, at least give a higher chance to avoid crashing into the reefs!

Well tbh with you yes there are moments I look back on this whole journey and am frustrated and get a bit angry because so much of this could have been avoided. My mom suspected lyme early on - this was in the 1st year of my illness, and I saw a naturopath friend of mine and she said I should really dig into it based on my WB test results. Unfortunately all my doctor and doctor friends pushed us away from this dx, and did so hard making lyme seem like the most ridiculous thing in the world. I trusted them. We trusted them. It ended costing me a lot of years and pain. But hey, it is what it is. They didn't know better and I didn't either.

Whenever I feel that frustration or anger I know I have to try to channel things the other way. Think about the good and the positive and I do have much luck and things to be grateful for. That anger that can creep up is tempered by the fact that I'm getting better, I finally got the right dx, and I am lucky to have great doctors who are helping me now! and it is best for me to not think of all those years as "lost" years, they helped form me into who I am today, my journey and struggle has helped develop me and hopefully I can use it in various ways, both personally and professionally as a pathway to being a better person.

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2921
   Posted 8/7/2017 10:08 AM (GMT -6)   
>>Dr H goes with dapsone therapy first before he moves on in trying pyrazinamide.

Dr. J also uses Dapsone for persistent chronic cases. When I spoke to Dr. J about it he claimed it was his idea first. Funny how him and Dr. H go back and forth on who is on the front line with treatments.

I'm pretty sure I'm in that 8% Dr. H references so its important that I'm working with Dr. J. I see him this Thursday and I know I'm starting Dapsone shortly. Believe I'll also be adding Rifampin and Alinia. Definitely going to talk to him about PZA I'm sure he knows about it and is prob using it.

Dr. J has also used gentamycin and vancomycin so plan on asking him when he would introduce these heavier abx's.

Thanks for sharing sebreg very helpful will keep everyone posted on my next leg of the journey!
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