JovaLyme said...
Thanks for all the great advice as usual. You really do know your stuff my friend.
I just read a lot, do a lot of research and have watched a lot of presentations, most of the credit is due to the Lyme Literate Doctors like Dr. H and Dr. J, as well as scientists like Dr. Sapi, Dr. MacDonald and others. As well as lyme patients who share their success stories...
JovaLyme said...
but I'm expecting it to hit me quite hard as my brain and nervous system are by far the worst affected by this.
Yeah I think disulfiram or dapsone would be a great candidiate for you then, both have great penetration and cross the blood brain barrier quite well.
Dapsone was one of the first drugs I used that basically lifted a cloud off my head, felt like my IQ doubled within days. But seriously, that's how a pathogen can impact a person's thinking. I was just mentioning to Astroman in another thread how hook worm in the United States made southerners walk around like zombies and couldn't think, and that's how there became a sterotype in the south. Scary, what's you read more into this stuff.
"How a Worm Gave the South a Bad Name"
https://www.pbs.org/wgbh/nova/article/how-a-worm-gave-the-south-a-bad-name/"Joe Rogan on Hook Worm"
https://youtu.be/1izxk0ikvr4?t=184JovaLyme said...
Definitely low and slow for me. I am going to kind of play it by ear a bit. Starting off at a very low dose and just see what it does. It might be the case that I never get beyond a low dose. I just don't know until it is in my system and killing things.
Yes, 25mg a day of Dapsone made one hell of a difference just for me, stevia also seem to help it's antimicrobial effects.
JovaLyme said...
I have some organic stevia in powder form at the moment and don't really know what to do with it. I've tried putting it under my tongue before and it is disgusting. I don't know if there is any way I can make it into something else. Tried it in water and it just clumps together.
Worth a try, as that's the form xylitol comes in and can still work on biofilms, but I know Dr. Sapi said the purest most concentrated in the liquid form tends to be the best.
https://newsweetleaf-wpengine.netdna-ssl.com/wp-content/uploads/2018/06/sl-products-stevia-concentrate-2oz.pngJovaLyme said...
Unfortunately, I don't actually know what infections I actually have. I know for sure I have Borrelia because I have two positive tests for that, but I have absolutely no idea what else. Going by my symptoms I would definitely say Bartonella and possibly Babesia. I seem to have exactly the same symptoms as most people here who have those confirmed. The only thing I don't really get is mild fevers. I sometimes get chills and very occasionally sweat at night in bed, but nothing too dramatic.
By the sounds of it, if I remember bartonella was dominant with most likely borrelia. I've heard some patients having to battle both bartonella and babesia at the same time. While others battle bartonella, then few weeks or months down the road, babesia pops up.
Good thing is, you're using a drug that is antibacterial, antiparasitic, antiviral, and antipersister cell. However, it does wake up dormant cells, so what could happen, you never know by any means. But there will be some die off going on, that's for sure.
JovaLyme said...
It also doesn't help that I was bitten by something very nasty in Australia, which makes things more complicated. I could also have been infected with something specific to that part of the world. I know Lyme is in Australia, so it could just be that, but who knows? What I really need is an infectious disease specialist to run a full panel for just about everything, but I've got no chance of that on the NHS. Even though I have a confirmed diagnosis of Borrelia, I haven't been referred to an infectious disease specialist. It is ridiculous, especially as my symptoms are very long term and now quite severe.
Yes, different strain of borrelia that we don't have in the states, maybe even a different species like miyamotoi disease, which they say cause symptoms more severe and even a high fever.
https://www.foxnews.com/health/tick-borne-b-miyamotoi-disease-new-yorkJust to let you know, I've heard the strains out west in California tend to be less severe and agressive, while the strains of borrelia in the east are more aggressive. But that was years ago I heard that, it could be just that lyme patients in the east are more likely to have coinfections like babesia and bartonella, that's a fact. As I've talked with a few patients from New York, Washington DC, etc... Those that treated aggressively with Dr. in DC or Dr. J, are the one's who reached remission because they also treated the coinfections
JovaLyme said...
It's a huge pain in the butt not knowing what infections I have. I am having to treat this myself and not knowing for sure means I can't make a judgement about what to take for it. I don't want to be taking Bartonella drugs if I don't have Bartonella.
I'm sure as inflammation goes down and the autoimmunity state your body is in, where everything is inflamed, once that goes down you'll start to notice specific symptoms a lot easier and what drug works on what coinfection. At least that's how it worked for me.
JovaLyme said...
I'm hoping disulfiram can at least provide some relief. I have got the test kit from Armin to run a Babesia or Bartonella test, but don't have the money to get it done at the moment. Been turned down for disability too, which doesn't help but I am appealing that. If I win my appeal I will have about 6 or 7 months of back payments coming my way and we could sure do with that right now!
I'm positive it will help you, it's probably the best drug to start off with considering it doesn't wreak havoc on the microbiome, which will boost your immune system when you start killing off the source of the problem.
JovaLyme said...
I've not really heard Doctor H talk much about disulfiram. He's certainly not been giving it the same kind of attention as others seem to be from what I've seen.
Yeah he mentioned it in a brief video from what I remember, I think it was either on his facebook page or youtube. But he said #1 herxing drug for his patients versus Dapsone, which now comes in at #2. Be sure to like to his facebook page so you get notified on updates.
JovaLyme said...
I will say one thing though; a couple of Jernigan's products do seem to have some kind of effect. I got almost nothing from the neuro Antitox at all unfortunately. But I do feel that Borrelogen and Microbojen do something. They certainly haven't improved my symptoms, but they certainly piss something off in there because the stabbing and tingling gets worse on those. I've also noticed that kelp can have a similar effect.
I'm sure they do, herbs just in general are antibacterial and help with inflammation. But herbs have problems not crossing the blood brain barrier. There's this misconception like they don't also wreak havoc on the microbiome, I'm sure they're safer, but anything antibacterial still alters the microbiome, even too many vegetables.
"Human Gut Bacterial Communities Are Altered by Addition of Cruciferous Vegetables to a Controlled Fruit- and Vegetable-Free Diet"
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc2728691/There's just things that drugs like disulfiram can do which Borrelogen will never be able to do, such as cross the blood brain barrier very well, treat babesia, wake up and kill dormant persister cells, and possibly also hit bartonella. This is a complex disease and while some are trying to push their protocols and own herbal supplements, if any of these herbs cured patients by now, you'd be hearing all about
it on the forums with people jumping for joy. What you do hear, are the success stories from disulfiram and dapsone. But I'll say this, I could only be on some of those antiparsitic drugs for babesia for only a few weeks, I believe csa formula and a-bab extremely helped me for babesia. But again, that's after I knocked it back with primaquine and coartem.
I think they all have their use, especially the detox supplements, but many are hyped up, and many don't understand you just don't get the absoprtion, half life, or penetration you do with something like disulfiram and dapsone. Remind you, I think I read reports of spirochete drilling into bone, possibly hanging out in the bone marrow, even drilling deep within the spine and nervous system. It wasn't until I went on something like Dapsone, that my spine and sciatica issues had cleared up.
https://blogs.scientificamerican.com/artful-amoeba/on-the-curious-motions-of-syphilis-and-lyme-disease-bacteria/ScientificAmerican.com said...
In syphilis, the spirochetes seem to be amazingly good and fast at this, managing to find their way into blood, lymph nodes, bone marrow, spleen, and testes in laboratory animals in less than 48 hours.
Question, how does a herbal formula get in the bone marrow, spleen, or past the blood brain barrier. It's just not going to happen. Now herbs for something like babesia, which doesn't dig as deep into the body, I could see some major benefits. But it seems each coinfection, types of bacteria and parasites have their own characteristics how deep they can go, where they hide out at, how you're going to get the drugs and herbs there. Someone like Stephen Buhner doesn't get into deep detail how something like Sida Acuta/Houttuynia is going to reach deep parts of the body like the liver, lymph node, and thyroid where the bartonella bacteria likes to hide out at. Let alone spirochetes, I think he does his homework on what herb works on what pathogen, but he's not considering the absorption, the blood brain barrier, how spirochetes dig in the bone. When members come on here suggesting they're getting the vibe antibiotics are bad for the treatment of lyme disease, sorry, the guy is completely wrong. I still think he's a smart guy in his own way and helps many patients, but what are the remission rates of herbs versus antibiotics, there, you have your answer.
"Buhner books scare me... - Lyme Disease"
https://www.healingwell.com/community/default.aspx?f=30&m=4148772But again, I'm still a huge advocate of a healthy diet, I take cryptolepis everyday to hopefully keep my babesia in remission as I treat bartonella with bactrim and biaxin, take curcumin 2x a day to help with inflammation and hope to prevent Parkinsons, as well as magnesium and many other supplements for bartonella neuro symptoms and detox. But I don't ignore science when it doesn't fit my ideals and protocols, which I think some herbalists and alternative medical doctors are doing, considering Buhner's view on biofilms.
Stephen Buhner said...
I am not a big fan of the biofilm hysteria that is common among the lyme community right now. ALL bacteria form biofilms. It is just a grouping of bacteria together in one location and the formation of a kind of rigid structure, similar to coral formation in the oceans, that they use to protect themselves. This is just ONE of a great many mechanisms bacteria use to protect themselves from immune responses or antibacterial substances and so on. It is no more dangerous or important than the bacterial ability to use efflux pumps to remove antibacterial substances from their cells or to use the immune system itself to hide from assault. Most herbal medicines are effective against biofilm formations just as are most immune systems. A biofilm may slow down effectiveness of immune response or herbal antibacterials but it does not stop them. It is not the terminator of bacterial protection. Biofilms have been around for eons and plants and immune systems have developed mechanisms for dealing with them. I would not worry about them as of being of particular importance in becoming healthy.
Biofilm is a Hysteria?
"Around 550,000 fatalities each year are attributed to these biofilms in the US"
https://www.dailymail.co.uk/health/article-5821197/applying-tea-tree-oil-extracts-surgical-tools-kill-deadly-bugs.htmlAfter 16 years of antibiotics, Dr. Sapi said she still found biofilms and spirochetes in multiple organs and tissue.
Dr. Sapi said she believes the reason Lyme is chronic, is because of biofilms.
https://youtu.be/_gojg7qzomw?t=12m15sI've heard some LLMDs like this one explain how this material is almost impossible to get rid of in the system.
https://youtu.be/wlqukrz_rj8?t=260"Biofilm: How This Slimy Coating Is Causing Chronic Fatigue, Fibromyalgia, Irritable Bowel, and More!"
https://bodyecology.com/articles/biofilm-how-this-slimy-coating-is-causing-chronic-fatigue-fibromyalgia-irritable-bowel-and-more/
The big question is, what is Dr. J or Stephen Buhner plan for treating persister cells or biofilms. I know Buhner addresses drug resistant coinfections like babesia and bartonella, I love him for that reason, but I have yet to hear that Dr. J from the Hasna center talk about persister cells, biofilms, or drug resistant coinfections like babesia and bartonella. Truth be told, the reason why cancer stays chronic is persister cells, AIDs stays chronic is because persister cells, why Malaria stays chronic persister cells. This really isn't rocket science, if some would have done they're homework, they'd realize that.And what you know disulfiram has found it's use for Cancer, AIDs, and now Chronic Lyme Disease. Just a coincidence, no, Dr. Kim Lewis knew the capabilities of the drug before testing in on lyme persister cells, as they've been testing it on cancer persister cells and HIV persister cells.
I suspect even if disulfiram doesn't cure the majority of lyme patients solely with the drug, it will still find major use for waking up the dormant persister cells and following up with an antibiotic. Just like what they were doing with HIV/AIDs, waking up dormant HIV cells with disulfiram, then following up with an antiviral drug to kill the cancer cells that just woke up.
Post Edited (Charlie55) : 10/15/2019 12:03:46 PM (GMT-6)