posted
First off, I want thank Dr. H, Dr. S, Dr. B for never giving up on us that have chronic lyme, they are my heroes.
I think with Dr. H's extreme success with Dapsone and Stevia together, there could be a possible cure on the horizon, let me ellaborate.
I've had Lyme for around 6 years, made some progress with Flagyl, but plateud. Before taking Dapsone and Stevia together, I was about 80-90%, after taking Dapsone and Stevia I felt 100% for a whole two weeks, then kind of got fatigued and bottomed out.
Probably because I wasn't taking enough Folic Acid, Dr. H recommends around 30mg, if you look at what the traditional tablet is at the store, yeah that's a lot. So I upped my dosing, feel so much better.
So after taking Dapsone and Stevia together, I've gotten my life back. I'm clear headed now, I have tons energy, and feel great. This isn't the typical bs people claim with other controversial treatment, this is the best I've ever felt treating this disease.
Now I know that some people think Stevia can't get to the blood, I thought that too, "I was wrong!!!!" Buy the Sweetleaf Stevia Concentrate from Amazon, Wholefoods, or Better Health, it's very cheap, only like $10-$15, and it's super pure and raw, totally dark.
What you do is, put 5-10 drops underneath your tongue for like 30+ seconds, then swallow. I tried doing this without taking Dapsone, I hit the ground with instant fatigue, I couldn't get off the couch for 3 days straight. That's until I paired it up with 25mg of Dapsone.
I did it with Dapsone, immediately afterwards I got a bursts of energy I never fealt in my entire life, I got on the treadmill ran like 5 miles. So that told me something right there.
After being on Dapsone and this protocol for about a month, I've never felt so great in my entire life.
Now I know Dapsone has extreme side effects, especially when paired up with other antibiotics, that can extremely increase the chances of hypertensitiviy, but if you take a low dose of 25mg a day and that's it, less chance of getting side effects.
And I've found that Sulfa Drug like Dapsone has long half life in my body, it builds up for 2-4 weeks, so you might have to take a break in there, like a week, along with keep taking Stevia.
Dr. H uses Dapsone with other abx, which can increase the chances of hypersensitivity and side effects, I don't think it's needed. I know he does this for coinfections, but Dapsone already is a antiparasitic/antibacteria drug like Flagyl, so it could be possibly treating coinfections already.
And for those of you that don't want to risk it, you could try the other Mycobacterium drug pyrazinamide, which might have less side effects. I've also been having really good success and herxes using brown sugar in clear capsules with Stevia.
Here's a story for ya, I was on Flagyl+Ceftin+Doxy for whole month once, when I was eating Honey Bunches of Oats Maple Brown Sugar I was herxing like crazy, couldn't figure out why, but I couldn't pinpoint what it was, I just knew it was something in Honey Bunches of Oats Maple Brown Sugar, I thought I was crazy. So I kept eating it, I felt the most energy and clear headedness I felt in years, until I tried Dapsone and Stevia.
But something was working, just this past week I pinpointed what it was, it was the brown sugar. I'm not sure if it's just the molasses in brown sugar that brought out the bacteria, I ended up going to the store and buying some raw molasses putting it into capsules and then taking little Dapsone, worked little, but not as efficiently.
So what I'm assuming is was, it's the combination of the sugar and molasses, that forms the sweetness to the brown sugar that drives out the borrelia bacteria.
If you think I'm full of bs, you need to look up some of the recent studies done on using sugar and antbiotics together on antibiotic resistant forms of bacteria. If you've read the recent article on Dr. S, this is how she stumbled on Stevia, thinking it may trick the bacteria and help bust up biofilms.
Anyways, just to far warn everyone, do not take Dapsone or any other Mycobacterium drugs with out lyme literate doctor supervision and supervision without bloodwork.
Dapsone has to be taken with high doses of Folic Acid, Dr. H recommends up to 30mg a day, so buy a brand that has 800mcg and above if you can find it.
This is such great news, I think that it's possible within the next few years a cure for borreliosis could hit the market. This may work on patients with Parkinsons and Alzheimers as well, like Dr. M said with the plaques and nematodes.
Dr. H and I have been having great results with just the oral form, just imagine if a lab were able to compound it into a drug for lets say, taking intravenously for more potency and penetration.
It's been 2 years since the article put up on Dr. S testing the Curza CZ-1-99 drug, I'm curious when that's going to hit the market, said it worked 60% better. And I'm curious how well Stevia could work pairted up with lets say Bee Venom.
All I know is, the FDA has approved opioids, psych meds, and glyphosate for the market, yet those two are killing people by the 100s of thousands, when are these biofilm antibiotics like Curza and Agile Sciences’ Agilyte technology going to hit the market? People are dieing and committing suicide by lyme.
Anyways, I didn't want to share my results with everyone until I knew what I was feeling was consistent. What I mean was, it wasn't like Flagyl, where I felt better for a month and made some progress and that was it. I've found being on and off this protocol for 2 months now, that I get continuous herxing, as well as making progress.
For those that are in the earlier stages of treatment, using Stevia/Brown sugar and Dapsone or Flagyl or Tindamax may create an incredible herx.
Herxes for me weren't bad, I just felt dizziness, pins needles, and muscle twitching. I know for other people, like women, it causes extreme pain and epilepsy, so start of slow.
I also want to say, I'm a bodybuilder and athlete myself, one thing I've found in life is, you never can give up! And I like to add that the internet saved my life, I paired up my symptoms with the sympoms on the canlyme.com website.
And just so you know, the current presidency is looking to end net neutrality, which keeps a level playing field for small websites like canlyme.com, which helped saved my life. Be sure to protest Ajit Pai's decision to end net neutrality.
We all know Doctors hate the internet because we bring them new scientific studies, but ya know what, that's their fault for not staying up to date with the latest breakthroughs in science! This is the last freedom we have, don't let the internet go to waste!!!!!!!
Any questions, don't be afraid to ask.... Again, for those scared of trying Dapsone or pyrazinamide, you could try the Sweetleaf Stevia Concentrate with Fagyl+Doxy or Flagyl+Doxy+Ceftin see how it works.
I don't think Dr. S and Dr. H exactly know why the antiparasitic/antibacteria drugs work so well on Lyme, maybe because it's hitting all coinfections at once. Not sure, but I don't think flagyl or tindamax ever ended up on the persister cell list done by John Hopkins study.
And don't forget to try brown sugar in some clear capsules, I used the Domino Brown Sugar, it's like $2 at Meijer. And bought some Now empy capsules from Whole Foods. I wouldn't waste money on the overhyped overpriced Nutramedix Stevia...
Take care and hope this helps people. And for those of you that failed with Dapsone, just so you know, taking it alone for me didn't do much. It with Stevia is what causes the breakthrough in treatment for me.
I'm also curious how well this Sweetleaf Concentrate/Brown Sugar would work with Daptomycin, one of popular antibiotics that showed to kill persister cells in the Hopkins Study.
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hey Charlie, Loved your post. I too, have the upmost respect for all the Lyme doc s and researchers you mentioned. Without them, our families would be without us !
The problem most of us have here at lymenet are how to treat.
quote:Originally posted by Bartenderbonnie: Hey Charlie, Loved your post. I too, have the upmost respect for all the Lyme doc s and researchers you mentioned. Without them, our families would be without us !
The problem most of us have here at lymenet are how to treat.
What do I think, I think Dr. H is a lot more educated on Lyme than this Doctor that writes on that blog. That guy advertises his cures on Facebook, "sponsored posts" that popup in my feed, I'd be weary of anything that guy says. There's so many Doctors claiming they have the cure, their treatment works better than anyone else's, just be careful...
He's seems pretty educated on the subject, but from what I remember he uses for his protocol, it's just herbals.
Which is good and can somewhat work, but I don't think it's strong enough to combatant lyme and it's coinfections. Especially for people with late stage lyme. But herbals plus antibiotics, well I think those two are great together.
He said "chemical compounds present in stevia must be absorbed through the intestines — but the reason it works so well as a sweetener is because these substances are not absorbed through the intestines"
Again, the way I take it is underneath the tongue, then hold it, which can help the bioavailability, like vitamin b12, which then hopefully reaches the blood.
In my own experience, some of it does reach the blood, because without Stevia, Dapsone isn't as effective. Using both, I feel great. But even though I'm taking high doses of Folic Acid, my red blood cells are still tanking, so my energy levels go up and down.
I have super energy for like 2 weeks, then I gotta get off Dapsone because it seems to have a strong half life for me and collects in my body. Even taking it at 25mg...
And just so you know, this guy is guessing, he's a doctor, not a scientist that studies how herbs enter your body. Each herb is different too!
I think that Doctor means best, but I'd listen more to what Dr. H and his patients have been saying, because Dr. H has a lot, a lot, a lot more experience!
And what Dr. H is saying is, he's having success with Dapsone/pyrazinamide paired up with "other medications/herbal protocols to hit different forms of borrelia." Not just Stevia, so maybe Dr. H is having success with pairing Dapsone up with biofilm busters like nattokinase/serrapeptase.
To me nattokinase/serrapeptase neither had an effect for me, but again, I never tried them with Dapsone. I've found that you must have some type of antiparasitic/antibacterial antbiotic paired up with a biofilm buster in order to work. If you do either one seperately, they just don't have the same effect.
But I'm sticking with Stevia the most, because I have found that to work the best, along with brown sugar.
"Therefore stevia extract wouldn’t be expected to provide any significant systemic antimicrobial activity against Borrelia or any other microbes associated with Lyme disease. The only way it might work is if it was injected intravenously."
What he's said is logical and I thought that too, but after experiencing it first hand when I took Stevia underneath the tongue with antiparisitic/antibacterial antibiotics. It works! Works like nothing I've taken before....
But he did make a good point, how effective Stevia could become if it was turned into a drug and could be injected intravenously. We might have a cure on our hands.
Anyways, take it or leave it, I'm sure there's plenty of patients on this board that would never risk taking Dapsone, even at 25mg a day because of hypersensitivy.
But again, there's a few other antiparasitic/antibacterial antibiotics like Flagyl and Tindamax that might work together with Stevia. Maybe even pairing up doxy and malrone together with Stevia might work.
But from my own experience, I've found some success using Fagyl+Doxy+Ceftin and Stevia underneath the tongue, with brown sugar.
But everyone is different, maybe this won't have much effect with them, but reading some of the comments under Dr. H's post on Facebook, I saw a few patients commenting that this protocol has helped put borrelia into remission...
"The dapsone combo worked for me. It's been the first time in 4 years I was able to get off antibiotics without relapsing. Three months off all medication and still going strong Thank you Dr. Horowitz/John NP for giving those of us who the medical establishment has given up on hope."
By the way, I have yet to completely come off this combo for more than a week... So for all I know, I might of reached remission or knocked it back enough.
All I know is, when I come off it for a week, I feel just about 100%.. A feeling I never felt before. But I'm so determined to his this damn infection hard, I want to hit it hard enough so it doesn't come back for long time. Pulsing may do that with this setup, I know Dr. Burrascano had success pulsing his practice.
Regardless, I think this is gives those that are extremely sick a lot of hope!!!!! This is groundbreaking stuff I've never seen before!
And what's weird is, I haven't seen it talked about it much on the board. Kind of sad, especially when I see the one patient not getting into any details on Facebook about the protocol, when so many people are asking.
Like I told her, if you're not willing to talk about the antibiotics, you can at least share what over the counter herbals you used for biofilms with success.
So many people that have success, then just become bitter, then move on with their lives. A lot of people, once they reach remission, just want nothing to do with this disease ever again. Talking about Lyme, is just like talking about Climate Change or Aliens, it's completely taboo.
But, sharing your experience can help so many people fighting this disease, it's sad more people aren't open and outgoing sharing their success with their treatment.
Some of it's likely to do with the CDC/IDSA and they're cracking down on LLMDs, I'm sure of it. I mean I see how even on this board, the moderator still doesn't want you using full LLMD names.
I still think we're pushing through though, I for one would like to see some of those CDC/IDSA doctors go to jail, considering how many deaths they're responsible for. How they life with themselves I don't know, but like I'd shared with some of the people about my political opinions of these doctors, they kind of look at themselves as capitalistic Gordon Gecko type of doctors.
These Doctors see Wallstreet getting away with murder, so they think they can do it too. Didn't the Under Our Skin documentary reveal that some of the CDC/IDSA doctors have connections to Vaccine Pharmaceutical Corporations?
See they think they can make a cure, while at the same time make a ton of money while doing it. These scientists/doctors that work for Monsanto think the same thing.
Healthcare for profit isn't working, hence the opioid epidemic. As well as how Monsanto tainted our food supply, California just labled glyphosate a carcinogen, the main chemical found it roundup.
Monsanto's pesticide roundup is also responsible for killing all the bees of, which keeps all the plants in the world pollinated and the ecosystem thriving.
I don't think plants nor animals were ever meant to be mass manufactured like what they're doing under this capitalistic system. We're starting to see the end result, including climate change, which again becomes controversial. Why is that? Yet, it's the scientific consensus.
All this gets you thinking....
I just hope we have another 100 years on this planet, letting corporations and lobbyists dictate policy for healthcare and food market isn't working, that's obvious.
Fracking and the oil industry is another problem as well.
But just like all this, you can't talk about it, too political and controversial with people. Well guess what, these topics are becoming unavoidable now, because they're directly effecting all of us with Lyme Disease, our food supply, vaccines, healthcare treatment, etc...
They're completely unavoidable.... Good luck and take care! I've even seen quite a few things Dr. H has been posting on his Facebook lately, there's plenty of lyme patients even disagreeing with his political stance, lol....
Again unavoidable, tip I'd give you, start thinking outside the box on climate change and stop devoting your trust into your political party, they are not scientists nor doctors.... Nor are the corporate lobbyists that control them.
posted
Thanks for taking the time to share your story Charlie! I can tell you care about people... I did have a question for you.
Exactly what ARE the risks when taking Dapsone? You say hypersensitivity? What does that mean? Can it be permanent damage?
I think I am going to try the stevia... I am currently on Clindamycin, Mepron, Azithromycin, and Dararpim... maybe the stevia helps the drugs get to where they need to go?
Are you SURE its not the Folic Acid giving you energy? I know B vitamins sure can give you a boost and 30 mg is a loooooooot!!!!!!!!!!!
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
foxy, Dr. H. gave a talk in April in which he mentioned many of the side effects that make it impossible for many people (1/3 of all patients) to take Dapsone.
I took notes on this talk. Here are the notes on dapsone:
Treatment of lyme--Dapsone
1:36:40 Plaquenil hits the cyst form of lyme. Serapeptase and Neutramedix stevia hit biofilms.
1:38 Using persister drugs—Dapsone. 1:39 For a small percent of patients, you must pulse the Dapsone to get rid of persisters. Old TB persister drug (perizinimide) helped a patient with bartonella nodules on her hands (misdiagnosed as Behcet’s). This drug goes inside the cells.
1:41:30 Dapsone is used for leprosy, but it hits persisters and parasites and hits autoimmune illnesses. It gives a herx, so go slow!! Or pulse it (25 mg every other day). Work up to 100 mg.
It also causes anemia, can give rashes (it is a sulfa drug), and can cause methemoglobinemia (a blood disorder).
1:43:20 Also, you can’t carry oxygen, so you can get blue hands and lips. So, consider Dapsone if you have failed ALL other lyme drugs. It is very effective for neuro lyme symptoms.
If you failed all babs drugs, also consider it.
1:45:28 We don’t know the effective dose and the length of treatment necessary to completely eliminate persisters. The higher the dose of Dapsone, the better. Doxy, rifampin, and Dapsone is most effective combo (using 3-4 intracellular drugs together)
1/3 of patients cannot take Dapsone due to its side effects.
1:49 It does not affect your gut, so no candida concerns
1:50 Summary: You must treat all 3 forms of lyme. His new book goes into Dapsone treatment. They are doing a study so insurance will pay for treatment with Dapsone.
All of my notes on this talk can be found at this thread:
posted
Nice post and good info! Interestingly, I just started discussing adding Dapsone with my LLMD. Been hearing of it more and more lately from Lyme docs and researchers. This might be the final bullet needed as my Lyme is well controlled with antibiotics.
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Exactly what ARE the risks when taking Dapsone? You say hypersensitivity? What does that mean? Can it be permanent damage?
"Hypersensitivity (also called hypersensitivity reaction or intolerance) is a set of undesirable reactions produced by the normal immune system, including allergies and autoimmunity."
Biggest risk is death with hypersensitivity, but it's rare supposedly, it does happen though.
That's why I recommend low dose of 25mg and not mixing it with other antibiotics, which increases the chance, I'll talk about that down below.
Anemia also, which needs to be backed up with folic acid or methylfolate, but methylfolate made me feel horrible. So it's up to you what you want to take to rebuild your red blood cells.
Methylfolate could actually fool you into thinking you're getting sick from Dapsone, but it's the methylfolate. Not sure what it is with that supplement, but I'm not taking it ever again. Some say it's detoxing, I'm really not buying that bit.
There's people who don't even have lyme and can't tolerate Methylfolate. I know Methylfolate is a more bioavailability form of folate, supposed to help with red blood cells, which Dapsone diminishes. But there's other supplements like Alpha Lipoic Acid, Vitamin E, and B12.
Some take Methylfolate for MTHFR, that's great and all, but you can do that another time with another protocol or an antibiotic with less severe side effects than Dapsone. Or take it after you're done with dapsone treatment.
However, everyone's different, maybe I'm not MTHFR, and don't need his form of folate. Just be aware, Methylfolate has severe side effects too.
That's why I say take Dapsone and Stevia only, see what results they produce for ya. I did that with some Folic Acid, and few other vitamins, man it's done wonders for me.
quote:Originally posted by foxy loxy:
Are you SURE its not the Folic Acid giving you energy? I know B vitamins sure can give you a boost and 30 mg is a loooooooot!!!!!!!!!!!
I've tried so many supplements over the years, all the B-vitamins, none of which helped.
This is the same clear headedness and energy Dr. H talked about his wife feeling, along with other patients.
Again, I never felt this with any other antibiotic I tried before.
quote:Originally posted by foxy loxy:
I think I am going to try the stevia... I am currently on Clindamycin, Mepron, Azithromycin, and Dararpim... maybe the stevia helps the drugs get to where they need to go?
Are you SURE its not the Folic Acid giving you energy? I know B vitamins sure can give you a boost and 30 mg is a loooooooot!!!!!!!!!!!
That's what I'd recommend first, before getting into Dapsone.
Try Stevia with some antiparasitic antibacterial drugs first, that have less side effects, underneath the tongue for 30+ seconds, then swallo. Do not buy the nutramedix stevia, no need to, you'll burn through cash very quickly. $25-$30 a 1oz bottle, what a joke.
I had lot of success with just Sweet Leaf Stevia whole leaf concentrate, very reasonably priced, you get a 2oz.
quote:Originally posted by TF: foxy, Dr. H. gave a talk in April in which he mentioned many of the side effects that make it impossible for many people (1/3 of all patients) to take Dapsone.
That's why I would recommend just going with 25mg Dapsone a day and jut crushing it with Stevia, instead of just loading up on other antbiotics which can increase the side effects of Dapsone.
I bet more people would be able to tolerate Dapsone, if Dr. H would lower the amount.
You increase your chances of side effects of hypersensitivity when you're mixing antibiotics together with Dapsone, read studies implying this.
Dr. H is a brilliant man, I hate to question his treatment protocol, but if I were any of you on the board, I'd just do 25mg a day.
You'll be able to stay on it longer, breaks are a must anyways to let it clear from your body, then start it up again.
This strong sulfa drug builds up in your body fast. I think increasing to 100mg isn't worth it, considering the extreme side effects. And considering your red blood cells will most likely tank, I'd just stick to 25mg.
This is the strongest antbiotic I have ever taken, compared to any of the others, and I've taken lots. I only lasted like 3 days, trying dapsone with other antibiotics Dr. H recommended.
I've had a lot of success just taking 25mg Dapsone with Stevia for 2-3 weeks. Then a break...
quote:Originally posted by TF:
1:45:28 We don’t know the effective dose and the length of treatment necessary to completely eliminate persisters. The higher the dose of Dapsone, the better. Doxy, rifampin, and Dapsone is most effective combo (using 3-4 intracellular drugs together)
See that's the thing, no one does know. That's why I would just do small amounts and hit the borrelia hard with Stevia/Brown sugar instead.
But that's just me. Dapsone is mostly likely treating coinfections anyway, so many of the other antibiotic coinfections drugs are unneeded with Dapsone, since it's already antibacterial/antiparasitic.
6 years I've treated this infection, sometimes less is more when treating Lyme Disease longterm. Had one LLMD say that to me in Michigan, I think it very much implies to antibiotics that are more potent and have more side effects. Let the Stevia do the work, which has very few side effects if any.
A lot of people are failing with Dapsone, because they can't tolerate it and hate the feeling of anemia.
You only do 25mg a day, you can anticipate anemia coming on slowly, instead of taking 100mg a day and it hitting you hard, which does make you feel really really sick. This is a strong drug!!!
Again, I'm near the end of treatment, so I may have different results. But to me, even in someone in early treatment, starting off slow with 25mg a day would be more comprehensible because of the herxing, don't you think?
Dr. H has said that too with a lot of protocols over the years, start slow... I think some of his aggressiveness with Dapsone, is way to much for some to handle.
I just want people to get better and provide some hope for people out there. This progress Dr. H is having is so great to hear, he's going to go down in history has a legendary doctor I know it!!!
Posts: 108 | From Germany | Registered: Jul 2017
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posted
wow, thanks Charlie for that reply! I think it is kind of interesting... I am currently on Daraprim which also inhibits protozoan by inhibiting the "Folic acid" cycle.
That is why I am currently on methylfolate because I have two of the dreaded mthfr genes. I wonder if Daraprim and Dapsone are similar in how they are effective?
Seems as though the Daraprim is helping ! ?! I am shocked because nothing has helped me since I took metronidazole six years ago. Maybe the stevia will help! Hey.. anything that harmless is worth a try! I will keep you posted!
So glad you are better!!!! Thats incredible!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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quote:Originally posted by foxy loxy: wow, thanks Charlie for that reply! I think it is kind of interesting... I am currently on Daraprim which also inhibits protozoan by inhibiting the "Folic acid" cycle.
That is why I am currently on methylfolate because I have two of the dreaded mthfr genes. I wonder if Daraprim and Dapsone are similar in how they are effective?
On the whole mthfr side of things, nutrition side of things, working out/cardio side of things. These things are important, but I think you need to be careful with them, especially considering the cost.
I've been in treatment for like 6 years, worked out the last 3 years, hard!!! Pushing myself hard. No matter how hard I work out, what supplements I take, the chonic lyme keeps coming back.
Now I know the film Under Our Skin says, antibiotics are just the bullets, you need to do other healthy things to fight this disease.
I kind of disagree with that statement, you need to detox your liver and kidneys to stay healthy and take probiotics to prevent C. Diff true, but the main concentration should be the right antibiotic protocol.
There's a lot of money thrown elsewhere at other supplements that are just hyped, could actually make you feel horrible because you're taking too much of them.
Even Dapsone I've noticed, there's a balance I find with this drug, but soon as it starts building up in my body, I've been on it too long, it starts doing more harm than good, and I feel fatigued. I need to take a break from it, then I feel so much better.
Because I've experienced it first hand myself, unless you're treating the biofilms directly, using the right antibiotic protocols like Dapsone, Fagyl, Tindamax and others. You'll get nowhere with this disease.
Plenty of lyme patients on this board that think there's no difference between IV antibiotics and orals, yet statistically speaking, I've seen more people reach remission with IVs, than any other treatment, until Dapsone and some of these Mycobacterium "Oral" Drugs have surfaced.
The underlying cause of people staying chronic is the biofilms, cyst forms, coinfections, and the spirochetes themselves. You hit them hard enough with the right antibiotic protocol from the beginning, you'll allow your immune system and body to heal itself instantly.
Doctors like Dr. S have known that using weaker antibiotics like Amoxicillin in beginning stages can actually cause biofilms to form, influence spirochetes to go deeper, cause the bacteria to throw up it's self defense mechanisms. Dr. J on Reluctant Preppers talked about this in a video https://youtu.be/WlQukRz_Rj8
I'm so disappointed some of the LLMDs in Michigan didn't start me off with more potent antibiotics like Flagyl and Tindamax from the get go, might explain why treatment has been so long for me.
But I still thank them, because they basically stopped borrelia in it's tracks, prevented it from doing more harm. Those weaker antibiotics may have created the bacteria to become more resilient and cause treatment to be longer, but without any antibiotics, that's when I think you increase chances of being like a Michael J Fox case, rather than someone chroniclly ill with lyme. Again people, this is just my opinion, so don't bite my head off... I very well could be wrong!
All that other nonsense being mentioned isn't keeping people chronically ill infected for the most part, sure there's some people that develop autoimmune disorders like Michael J. Fox, but I think "most lyme patients" could heal properly if they were given the right protocol. Dr. H has shown this.
People can argue all they want about this and that, about mthfr mutations, Vitamin D and B12 levels, magnesium, detox baths, etc...
All these people on these supplements, are they in remission? Very few if any! Yet, these topics are the main discussion on this board, rather than Dapsone and some of the latest breakthroughs Dr. H has been having success with?
I haven't concentrated on MTHFR or any the other stuff at all, detoxing, etc... I've just treated with the antibiotics that Dr. Horrowitz recommends to treat with, yet I'm almost 100%.
I know Dr. Horrowitz centers on health and that's good, he talks about MTHFR. I do stay on a gluten free diet, eaty healthy, I do feel so much better doing that.
Looking at the latest study on Reovirus causing Celiac, it's very much likely a borrelia infection will cause Celiac Disease too. So eating grain and gluten may be causing a lot of harm to Lyme patients too.
I think what I'm getting at through all the nutritional supplement and antibiotic drug side of things, try to distinguish what's hogwash and what's true, it's not easy I know, but lot of information out there what works and what doesn't. Concentrate on that, keep all the rest of the stuff in the background.
CBD and Turmeric without a doubt, one of the best things you can take fore pain.
Just be careful with the supplement side, they'll bankrupt you, especially seeing what lyme influenced companies like NutraMedix charge for their supplements, meanwhile that money could of been spent elsewhere with treatment that has a better record.
I see a lot of people on this board concentrating on controversial treatment, rather than what works. I know people are desperate, but I've seen some breakthrough in the last year, yet no one is talking about it on this board. It's rather disturbing...
Be careful, that's all I'm saying.... A lot of people being taken advantage of in the Lyme community...
quote: Seems as though the Daraprim is helping ! ? [/QB]
Just so you know, the success I've had with Dapsone, and even Fagyl 3-4 years ago, those "weren't seems as though they were helping treatments," for me, I felt better instantly.
Like a cloud was lifted off my head using Dapsone and Stevia together. You'll know if it's working with weeks... Sure soem drugs will take longer than others, but the one's that have helped me the most, were quite instant.
Another Drug Lyme patients have been talking about is Disulfiram... Disulfiram and Daraprim, which you mentioned....
So those I'll have to research more, if I don't reach remission with Dapsone.
Posts: 108 | From Germany | Registered: Jul 2017
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Hey Charlie, thanks a bunch for all the precise info on what worked for you.
It's kind of you to come here and post. Great ideas too, and very encouraging for those still battling this hard to treat disease.
Just one minus is about people in full remission. Yes, there are people in full remission only taking supplements and a couple of herbs.
The most difficult for me, was not to reach remission, but to stay in remission WITHOUT treatment (meaning, without antimicrobials).
It's super great that you reached the feeling of 100%, but take my word on that: you still have some length to go, so don't discard what worked for others!
I feel we all need to have a humble attitude towards Bb and co infection friends, specially candida. No one is immune to be reinfected again, and we'll harbor the dormant forms of Bb forever... even if fully inactive.
Vit D is used by my lyme doctor to all his lyme and post lyme patients. Fish oil, eating natural, herbs, infrared whatever natural treatments are always a plus.
Remaining on remission is the hardest part, and while I could reach remission DESPITE multiple tick bites that came every year, the HARDEST part with lyme was to REMAIN more than a year in remission.
In my case, I did not need drugs to reach remission. It was staying in remission, my problem. It all got solved after photons + borrelia nosodes, but not before.
Don't yet consider yourself cured, keep alert, the true healing phase is after Bb goes dormant, and how will you do to keep it like that for the next years to come. That's just my humble opinion.
Anyway, congratulations. I like your very systematic approach! I see you are an athlete who needs to build up plans for training. I hope you'll be able to go back again to full training despite treatment!
It's really great you post about that number: 100%. It makes people who are still battling, without hope, believe it is possible!
And great thread, thanks again. Posts: 6199 | From Brussels | Registered: Oct 2007
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"Acute dapsone poisoning in a 3-year-old child: Case report with review of literature"
There are quite a few real scientific reasons why this so called treatment is a very bad choice but if you understand the parameters of tissue tropism penetration and can retrieve the molecular weight from https://pubchem.ncbi.nlm.nih.gov/
Then you will also understand that it is not possible for this to work.
Some people make wild claims that are not supported by any good understanding of science, sometimes these claims are made solely to promote this doctor or that.
posted
Charlie, I like the way you think! I feel a lot the same. Supplements and herbs and exercise and diets and detoxes and ____ you name it can be helpful and a few might find them curative... but I have been through pretty much everything and the thing that helped me the most for a while was a drug. (flagyl)
Just remember though... your stevia is an herb! and Turmeric has been helpful for me. AAAAAND Herbs can be very supportive in curbing the side effects of meds.
My Dad has macular degeneration and Saffron has helped his vision! Incredible, and I am a skeptic.
Arginine also has been VERY helpful in that it helped my sensitive hearing and seizure like symptoms at night. Again... pretty incredible. And again just a reminder that I am a skeptic. I pop lots of strange things with crossed eyes because I am desperate!
Drugs haven't helped me very much (except metronidazole) and you are right... seems like if something is going to work it works pretty fast!
TF what did you mean about the NB protocol again? Something wrong I should be aware of?
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
No. It was a response to Jeff Jeff who is referencing a few NB Protocol websites as the basis for his argument. Beware.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Just remember though... your stevia is an herb! and Turmeric has been helpful for me. AAAAAND Herbs can be very supportive in curbing the side effects of meds.
[/QB]
Well aware of that, just know their place is the point I'm making.
People will argue with you till they're blue in their face about these topics... Very few know what they're talking about when discussing this disease.
Concentrate on treatment and doctors with a proven track record...
Take care...
Posts: 108 | From Germany | Registered: Jul 2017
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@TF Beware of Exactly what? There isn't one thing wrong with the NB protocol that you can find because there isn't anything wrong with it.
But if a person was being TRUTHFUL and really understood the science then they could see everything that is wrong with the Dr H approach.
The NB protocol will actually cure a person and the point of Lymenet is to help a person get cured where this thread reads like a commercial for Dr H and his stuff won't cure a person.
So TF why don't you look in the mirror and ask yourself why you are spreading these false narratives when you clearly don't understand the real science.
I don't know what makes it as a special protocol...
Maybe the sequence?
The dangerous things I see are:
- ALA at the beginning of treatment (it can send heavy metals directly to the brain according to dr. K, unless you do a more complete organ cleaning and matrix chelation before using ALA)
I had a severe reaction to ALA and then postponed its use after I was months on chelators.
- MSM can be bad for people with sulfur intolerance (I loved it though)
There are quite many people I hear of with problems with sulfur.
I never really took MSM for calcification, only because it is a good chelator, and it does help for herxes.
MSM is almost standard for lyme, at least, that's what my lyme dr recommends to most of his patients.
- silver stuff: I can't comment, but so far, I haven't been convinced about ingesting actual silver or gold or copper... No matter in which form.
I decided to take silver just weeks ago, in pure energetic form (zero atoms of silver inside).
It did feel good, but as I no longer have lyme, I discontinued.
My daughter took that energy silver though, for a cold or something like that.
But I would never give my child 'real' silver, because I'm chicken about heavy metals.
Too many years spent on chelators, I suspect made me wary.
For the rest, I think the list is still a good list of treatment suggestions, but I don't see it as a special protocol, as it uses what most people already use.
Anyway, it's always good to discuss.
And to know that what works for some people not necessarily will work for everybody.
Posts: 6199 | From Brussels | Registered: Oct 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
For whomever is interested, here are a few recent threads on LymeNet about the NB Protocol:
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