i pulsed roceph and zith iv much cheaper for a year by doing them myself with infuserve america elastomeric pump balls ...i should mention i have a smart port installed in my chest and access for the day or 3 via a huber needle covered in tegaderm ...it relieved the excruciating joint pain after a month however when i read that burrascano noticed it only put bartonella sx on pause i went further with zhang bvt and rife . fwiw i had better herxes on andrographis and bvt than rocephin and even in my bloodstream spirochetes were clearly unphased and alive leading me to believe most of the relief is the anti-inflammation aspects so i switched to glutithione and vit c for a year...

JovaLyme said...
Hi Charlie,

Where have you been? I've missed your very informative posts!

Which infections are Dapsone and Pyrazinamide thought to hit?

I've got some disulfiram on the way, but I'm thinking of getting something else lined up in case I don't have the kind of success with it that some do.

Trying to help lyme patients on Facebook Groups, reading up on new articles, watching YouTube videos. Also out enjoying life, working here and there, enjoying some of my hobbies and sports. Thinking about starting my own forum, as I do web design. My bartonella symptoms have gotten a lot better... There's just so much misinformation out there, I'm tired of hearing about it, like this post suggesting "Long-term Lyme disease actually chronic fatigue syndrome." When it's the other way around....
https://www.bbc.com/news/health-49998344

LymeNet.org's basically dead, HealingWell.com is great, but things like the search box is lacking where members should be able to search by member, more in-depth, by specific category and read every post ever made by a member. And really, this forum isn't centered around lyme and other tick-borne infections. Anyways, I think it's about time for a change and I'm thinking about going with XenForo forum software, not hard on the server yet great search capabilities, navigation, and private messaging. Vbulletin used to be the best, but now it has so many features and other crap that weigh it down.

Anyways, I'm still a bit worried, as once some people start making waves in a billion or should I say trillion dollar industry with crony capitalism and corrupt medical system that is based solely off of profits and disease management. symptoms maintenance, end up go missing or brought up in lawsuits, silenced in some sort of way.. Some of the hollistic Doctors have gone missing, you've seen what happens to the Lyme Doctors that cure chronic lyme, such as Dr. J, getting their licenses revoked.

https://www.globalresearch.ca/cancer-and-autism-mysterious-deaths-of-alternative-health-doctors-who-have-real-cures-not-approved-by-the-fda/5465809

I like to believe we're at a different point now with chronic lyme, with the major lawsuit against the CDC and IDSA down in Texas. More states protecting LLMDs. But still, I know what this country has turned into and what's it's become. People are fighting back, but it's still more corrupt than ever.

JovaLyme said...
Hi Charlie,

Where have you been? I've missed your very informative posts!

Which infections are Dapsone and Pyrazinamide thought to hit?

I've got some disulfiram on the way, but I'm thinking of getting something else lined up in case I don't have the kind of success with it that some do.

Well like Dr. H says, Dapsone hits borrelia for the most part, has good blood brain barrier penetration, long half life so it's great for absorption, and very similar to disulfiram as it's not hard on the microbiome. Dr. H also suspects Dapsone partially hits babesia as well as bartonella.

https://www.researchgate.net/publication/304000313_the_use_of_dapsone_as_a_novel_persister_drug_in_the_treatment_of_chronic_lyme_diseasepost_treatment_lyme_disease_syndrome

Dr. H on Dapsone and the Microbiome said...
negative effect on the G.I. microbiome.

Pyrazinamide hits persister cells with drug resistant tuberculosis. Dr. H has shown in a few drug resistant cases with patients when Pyrazinamide worked on a bartonella patient, when no other antibiotic worked on Bartonella.

https://youtu.be/bzu0weofvm8?t=5980

And I also just heard through a few Bartonella patients on the Facebook group "Beating Bartonella," it helped some of them reach remission and others that mage huge strides with the drug when they plateaued with other antibiotics.

Sadly, not a lot of LLMDs are using this drug for Bartonella or even borrelia, it's barely even talked about on the lyme forums. I'm very much glad I jointed the groups on Facebook, there's a lot of discussion I haven't heard which isn't talked about on the forums.
https://www.facebook.com/groups/405030996206293/

Anyways, Dr. Ying Zhang from John Hopkins did a presentation on Pyrazinamide theorizing it can possibly pull the roots out of borrelia bacteria, as well as others, stop so many patients from relapsing. As when he means roots, he means dormant persister cells. See, some antibiotics hit the active borrelia spirochetes and bartonella bacteria, while other drugs specifically target dormant persisters cells. The persister cells along with the blood brain barrier is why I think herbs aren't going to cure majority of chronic lyme cases. I think herbs help, especially with borrelia longterm because it has a slow growth cycle. And also babesia because we don't have a lot of drugs that can be used longterm. But bartonella? This beast, I was on houttuynia and sida acuta and I kept getting worse, I was close to hallucinating, then I got on specific bartonella antibiotics and a lot of the symptoms immediately went away. There's just some things herbs can't do like target persister cells, penetrate the blood brain barrier, and penetrate deep into the body, hence IV antibiotics.

I recently mentioned it to my LLMD whether he'd prescribe rifabutin or pyrazinamide. He said rifabutin has side effects... Then I asked them what kind of side effects, ignored the question, and he basically flat out stated he doesn't prescribe pyrazinamide.

Interesting, considering he said he sometimes gives out fluoroquinolones like cipro, which has numerous black box warnings and can cause permanent damage to tends and even the brain.

Remind you, pyrazinamide has been used for safely for decades on turbercuslosis patients. So this is the complaints I have against these lower level LLMDs who are set in their ways. He'll prescribe me cipro for my bartonella, but not rifabutin or pyrazinamide because he's basically set in his ways... Hmmm.... He basically just used bactrim and omnicef or bactrim and rifampin. But hey, at least he treats bartonella, the other two LLMDs in Michigan are completely useless when treating coinfections like Bartonella. Dr. Z in Bruce Township told me to go see his church group for my neuro symptoms. lol And Dr. M in Keego Harbo just treats longterm with low dose minocycline, how mino suppose to treat babesia and bartonella persister cells is beyond me. Anyways, they're all in their 60s, all three set in their own ways, I suspect they'll all be retiring soon.

My Doctor currently is going to the ILADs meeting soon in Michigan, both Dr. B himself and Dr. C from Cisco New York plan to speak at the even, as well as Dr. L from Saginaw. I'm still wandering why Dr. L doesn't consider the antibiotic and antiparasitic drugs being used by Dr. J, Dr. B, Dr. H. I suspect he's worried about lawsuits and being brought before the medical board, as I have seen a few posts about him.

Some lyme patients when they don't get cured, lose all their money, end up blaming the LLMD for all their problems then try to link it to SIBO, C-Diff or Dysbiosis. Which I know the IDSA/CDC loves to hear, so any chance they get they make an example out of these doctors when this happens. So suspect this is why some of the LLMDs in Michigan don't use the better persister cell drugs, remind you Michigan isn't a protected state for longterm antbiotic coverage. Even though we have our own state representative patient here protesting Representative Karen Whitsett testifying what she went through. How most young doctors don't want to treat lyme because of the risk of their reputation and losing their license, how it's usually only the older doctors that treat chronic lyme. Remind you her Lyme Literate Doctor in Birmingham Michigan died while she was on IV antibiotics, she said she was hoping her LLMD would live to see the day where she was in remission.
https://youtu.be/0vcpvv6rxf4

Anyways, I'm tired of this crap, what happens when these 3 LLMDs get old and retire in Michigan. in the 8 years I've studied this disease, I don't seen any new doctors starting a new lyme practice in my state. So what happens to all these Michiganders? Big question... I guess most don't give a crap, it's all very scary... Just like Willy Burgdorfer said about Lyme being biowarfare weapon, why doesn't someone come forward. Then he said, wait, I am that someone, so he decided to make a difference and speak out for the better of humanity. Anways, I plan to put my webmaster skills to work shortly. It's not easy running a forum, but hopefully some of the herbal/supplement commissions and donations can keep the forum going.

You know I suspect a cure will be coming from Dr. Kim Lewis's group for borrelia with disulfiram, but what isn't going away is the increase in vector borne illnesses in my state, other countries, and around the world. As some of the ILADs doctors put it, by the time we do find a cure for lyme, there will be worse pathogens in the environment. And if you look at what's going on due to climate change and milder winters, this is exactly what's happening with Heartland Virus, Powassan Virus, and even the new one in my state, EEE Virus which has just killed numerous people.
https://www.freep.com/story/sports/columnists/jeff-seidel/2019/10/11/eee-virus-has-affected-tens-thousands-people-west-michigan/3917578002/

I think not only talking about treatment of this vector borne illnesses is important, but prevention too. Like wearing protective socks over your pants. Thicker clothes and even chemicals like permethrin, even the hollistic stuff on your clothing. There's a lot of denial about climate change in my country due to propaganda put out by the oil industry, as well as a denial on glyphosate and PFAS, these are things that need to be talked about, but aren't being talked about people and they aren't educated on them.

Anyways, I'll still be around the forum I suspect, but I'll probably be on my forum, as well as the Facebook group and other places like YouTube more often.

Also, was great to hear a big win for freedom of speech, aka net neturality,
https://www.washingtonexaminer.com/news/net-neutrality-battleground-shifts-after-fcc-court-victory

washingtonexaminer.com said...
the ruling gives hope to proponents that new state laws could circumvent the FCC's decision.

"Court says FCC’s ‘unhinged’ net neutrality repeal can’t stop state laws"
https://techcrunch.com/2019/10/01/court-says-fccs-unhinged-net-neutrality-repeal-cant-stop-state-laws/

I think many Americans don't even understand this win or what it means for sites lymenet.org or HealingWell.com. This means that state laws can reinforce net neutrality, which is equal rights on the internet where every website is treated equally with equal speed and not throttled. Remind you, California firefighters internet reception was being throttled by Verizon when they were fighting the forest fires due to climate change. Remind you the current administration doesn't believe in climate change and the administration are the one's who appointed Ajit Pai as Chairman of the FCC, an ex-lawyer of Verizon, see the conflicts of interest?

"Verizon throttled fire department’s unlimited data during Calif. wildfire"
https://arstechnica.com/tech-policy/2018/08/verizon-throttled-fire-departments-unlimited-data-during-calif-wildfire/

Anyways, hope you're doing well JovaLyme...

Post Edited (Charlie55) : 10/13/2019 1:29:46 PM (GMT-6)

Girlie said...
Lvg - I wouid trust Dr J’s opinion.
He wouidnt recommend IV abx if he didn’t think it was necessary.

And you have given the orals a long enough time.

Exactly! Right on!!!

JovaLyme said...


Sounds like you've sure been busy!

I know what you mean about a lack of forums out there. Apart from this one there is precious little else, but I guess it's all on social media now, which has killed off a lot of forums. If you do make one of your own I would sure be interested in joining up. Good luck with it.

Yes, social media has definitely put a damper on forums. I kind of like the way the internet was 8 years ago, a lot has changed since then, but the facebook groups offer pretty good support. But I'd say there's stuff to learn on both the facebook groups and forums, some stuff doesn't get talked about on the forum, while some stuff doesn't get talked about on the facebook groups. Learning from both can be very very helpful.

JovaLyme said...


Thanks for all the information as always.

It's also interesting that the biological warfare claims are now seriously being questioned. I watched Lyme and Reason earlier and they covered it on there. The governments of this world might be denying this (for a number of reasons), but the public, sections of the media and some very capable researchers are taking this very seriously and trying to find a solution to this.

Yeah, that's another part of me, starting a forum isn't the safest or smartest thing to do right now, considering that side of lyme. I'm pretty well read versed on the biowarfare side of lyme as I'm a criminal justice major. My own LLMD in Michigan has read Kris Newby's book Bitten, he's also watched and is somewhat featured in the documentary Under the Eightball, so is Dr. M from Keego Harbor, a biowarfare film on Lyme.

All three doctors in Michigan seem to be pretty well versed and acknowledge the biowarfare side of Lyme. And I suspect that's why they're very careful what antibiotics they use, because the last thing they need is a lawsuit. All I know is, what's going on isn't good.

And it also could be that we're in some way in a cold war with other countries such as Russia, China, North Korea. I think most of these countries know, if there's a nuclear world war started, that's the end of civilization as we know it. I think they're using other means to destroy each other's country, biowarfare may be one of the means, considering Newby meantioned in her book Russia may be releasing some of these pathogens into the US and blaming the US's own government knowing the shady history on plum island.

Again, whatever's going on isn't good, meanwhile citizens like you and I are basically expendable to it all. We've always have been, whether it's agent orange in Vietnam. Depleted Uranium in the Iraq War. So on and so on, if we don't stop these wars, we won't have a planet left.

Anyways, I enjoy helping people, but I'm a realist to what's going on and all I can say is people like Kris Newby and Director Andy Abrahams Wilson have balls, big brass balls going against the medical establishment and basically the military industrial complex like this.

If this was another time in history and things weren't so public with social, youtube, and the internet, I would of bet both of them would of went missing a long time ago, just like how the reporters go missing in the communist countries.

Anyways, I would love to make a site, but having second thoughts considering it all. I love helping people, I think we all do, but there's a lot of responsibility and liability in owning a health site, blog or forum. This is a pretty good blog I read from time to time https://www.tiredoflyme.com

Dr. J in Maryland also had balls to post his experiences of using longterm antibiotics with his patients. He was even featured in Monsters Inside me, I think the medical board went after him eventually too just like Dr. J in DC.
http://lymemd.blogspot.com

You think this is all just coincidence, this is a trend, the only way the government and the CDC knows to handle this, is to just sweep it under the rug. That's how they deal with things! But like Dr. J from DC said in the Under Our Skin 2 documentary, the lie to too big to confess now. What happens from here out, I have no clue, but I suspect everyone's got their popcorn ready with the big case down in Texas against Blue Cross and the IDSA Doctors.

JovaLyme said...


You're right, this whole situation is a mess and exhausting to say the least. It's bad enough having this disease without the lack of medical help, controversy and having to fight the very system that claims it is there to help us.

I'm not doing particularly well and eagerly awaiting my delivery of disulfiram. Even getting that has been hard work.

It really is, sometimes you need a break from all of it, go watch some TV, try to live life somewhat normally hanging out with friends and family. Sometimes just getting back to the simplest things in life make it all worthwhile to keep fighting. I suspect I'll always be reading the forums chiming in now and then.

I'm just grateful a forum like HealingWell.com is still around, a lot of the others have lost a lot of activity. Gotta keep the conversation going...

JovaLyme said...


Just got to keep going and pray for the miracle I desperately need.

I hear ya man, I pray and hope for all of us at certain periods, hoping it all works out. Anyways, glad the getting access to disulfiram worked out for you! I'd recommend, starting slow and low dosage, some patients reporting bad neuropathy on Facebook disulfiram group, as wells a few patients reporting psychosis. But I think people used too high of dosage, like 500mg 2x a day right off the bat. The one guy that did it was 130 lbs, you should definitely base disulfiram dosage based off of your weight.

Anyways, I'll check out that Lyme & Reason episode, that news series has done great investigative journalism before, which real journalism like this is starting to become dead in this country. Dr. Lee talked about in this old episode where he's suing the CDC for millions for not using his lyme diagnostic test.
https://youtu.be/40ewjpreexy?t=989

Dr. Lee plans on making his data available to all lyme patients so they can sue. Another person that I could see going missing if he wasn't in the limelight.

It's rather interesting how some corporate media is finally talking about persister cells and drug resistant coinfections, while other corporate media still act like they don't know if chronic lyme even exists. There's still so much propaganda being purposely pumped out, that's obvious to me!

Post Edited (Charlie55) : 10/13/2019 6:31:01 PM (GMT-6)

Lvg - Please let us know if you do decide to do the IV abx -

Wishing you the best!

Lvg123 said...
I have been seeing Dr. J since December 2016. I was with his PA’s for most of the time and on oral antibiotics. The oral antibiotics really helped- there was a time I couldn’t walk or read. However, things have plateaued and I have been left with a lot of neurological symptoms such as fatigue, cognitive problems, memory loss, neuropathy such as tingling all over, tinnitus, pain in joints, but the fatigue is so unbearable that I am bedridden all day, even with taking Adderall!

My MRI showed brain damage in part of the brain and minimal small vessel disease. I still need to get a SPECT done as well, I have just been lazy.

Dr. J himself (not a PA) believes I need IV antibiotics at this point. It would be 6 months and it’d be IV plus oral antibiotics. The cost is $35,000 out of pocket. I have been pushing it off due to the costs.

Has anyone had success with IV antibiotics from Dr. J? Especially after years of oral antibiotics?

Please let me know your thoughts! This fatigue is unbearable and I can’t live like this!

———————

Lvg123, my daughter is on IV and we’ve had really good luck getting the scripts covered. The pharmacy that supplies her rocephin has told me most of their clients get their antibiotics covered. I have no idea how they are doing this and haven’t wanted to ask too many questions. Why rock the boat? Maybe check to see if Dr J would be willing to work with them. ASAP Pharmacy in Chicago. http://wecareasap.com/services
Not sure where you are located but the following states are where they are licensed to work:
Currently, we are licensed to serve patients in the following states: Arizona, California, Florida, Illinois, Indiana, Iowa, Missouri, Montana, New Jersey, New York, North Carolina, South Carolina, Texas, Virginia, Washington, and Wisconsin.

Post Edited (Upatnite) : 10/15/2019 5:42:34 AM (GMT-6)

RainyCloud said...
Lvg123 you mentioned you're on Adderall, I am too, for the fatigue.

What dosage are you on? Have you considered a higher dosage?

I'm completely 100% bedridden without Adderall.

I plan to stop it once I get rid of Lyme.

Also, what's the PH of your stomach? I don't mean the actual number but if you have an acidic stomach the Adderall will work less well. Meaning, you'll be even more tired.

Taking tums before adderall helps.

I only take 10 mg xr. I can’t go much higher bc it like makes my brain go crazy. Otherwise I’d ask for the max!!

I am glad you are able to at least get out of bed that’s amazing!! My husband takes 60 mg a day but he doesn’t have Lyme or anything just bad ADHD and it really helps him!

JovaLyme said...
@Charlie55,

I hear what you are saying about starting a forum. Most people who put themselves out there get a pretty hard time.

I don't know what to think about any of this to be honest. It's just plain infuriating. I've watched a few videos about the biowarfare theories. I don't know if there is any truth in it or not and I don't suppose we will ever know. In many ways it doesn't really matter now. It's not like anything can or will be done about it. It's too late for that.

We have an epidemic of Lyme disease and tick-borne infections and it needs to be addressed. Doctors need to know how to spot it, question some of the "unexplained" conditions like fibromyalgia, CFS and others and consider tests for infectious diseases in more cases than they currently do. The Lyme bacteria has been found in so many people with other illnesses. They've got to start taking this seriously instead of denying it.

The public just need to be more aware of the risks associated with ticks and parasites and protect themselves. It breaks my heart that there are young children infected with this.

I take my hat off to the people out there campaigning and fighting for more research and help. It's not something I would ever do. I would just like a quiet life and to feel well again. I don't have the mental strength to start fighting against the state and constantly come up against a brick wall. This has weakened me so much that I have almost nothing left.

I think something we have is a biowarfare element. It possible we are infected by a disease that scientists haven’t even fully pinpointed. But I mean Lyme disease would make the population basically incapacitated if everyone got it. It makes zero sense why no one can cure it and there’s so much controversy around it. Logically it just doesn’t all add up with the IDSA, the government not funding research(or barely), the CDC, and insurance companies collaborating together...they are making CFS a more important subject yet completely ignore 300,000 being infected with Lyme disease a year...makes no actual sense when there has been studies showing the persisters and how Lyme buries itself in tissue etc. I don’t buy that it’s all about just money. The CDC says Post Lyme Disease Syndrome is a person who got antibiotic treatment and shows all the signs and symptoms of Lyme but the person no longer has Lyme...that LITERALLY MAKES NO SENSE.

Please keep me updated on the disulfiram!!! I’d like to at least try that before doing IV!

Thank you for all of your replies I will do IV but in 2020. I just need to get the darn SPECT done.

In the meantime I’d like to try disulfiram. I know everyone says it’s risky but my body can handle it. I’ve taken almost every medication under the sun now with Dr. J and the only one that was really strong for me and most effective in my treatment was Pyrimethamine/Leucovorin. I herxed so much on that drug but in a month I was feeling better!!!