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Author Topic: Who ARE these people?
Jordana
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Lyme case 1993 filed NCBI; woman has untreated Lyme of 15 years duration and chronic progressive encephalomyelitis -- gets 18 days of IV penicillin -- cured!!! Total remission!

https://www.ncbi.nlm.nih.gov/pubmed/8262411

[ 11-29-2016, 10:14 PM: Message edited by: Jordana ]

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WPinVA
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Maybe she's not really in remission and it may not last. Even they admit she still "has only mild paresis of the left leg."
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bluelyme
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https://www.ncbi.nlm.nih.gov/pubmed/19670562

comlete recovery after rocephin?...did they check back in a few months doubt it ....

hey my twitching was helped by the big guns ..

--------------------
Blue

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Muscle Car55
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That's "1993," a lot less coinfections during that time, and a lot less persistent borrelia.

Since then, almost three decades have gone by, you can expect borrelia to adapt and become more resilient to antibiotics.

But yes, hitting Lyme as hard and quickly with the most penetrating antbiotics has been the protocol of some of the top Lyme literate ILADs doctors. Everyone should receive IVs, but most of the time no one can afford and insurance won't pay.

Dr. B “If someone has chronic Lyme but does not do IV therapy, the chances of them recovering are small.”

It's not uncommon of Lyme patients reaching remission quickly with IV antibiotics, but 18 days does sound highly questionable. Again though, this was 1993...

Mandy Hughes had untreated Lyme for 10 years, hit it hard with Dr. Js protocol of IV antibiotics, reached remission in 7 months.

Just my input too on remission, a lot of people jump the gun and say they've reached remission, including many of the LLMDs. Many of the LLMDs thought they probably have cured me since I left their office, so they easily make that conclusion.

Sad to say, it isn't the truth! You need to give yourself at least 6 months to a full year to make a remission conclusion.

But a lot of LLMDs and patients jump to conclusions, I'm guessing because of optimism and just hype on trying to gain more patients. Hence "money!"

I'm very skeptic of Dr. H's statistics of his patients reaching remission. Anyone whose dealt with the disease for a long time knows Lyme statistics of the cure rate and diagnose rate are nowhere near accurate.

Remember Dr. H sells books too, I have the utmost respect for the guy, but anytime there's money involved, that can really distort the facts of what the actual cure rate is with his protocols...

If there was so much success with Dapsone and his other protocols, other LLMDs would be claiming success from using his protocols too, just not the case. But the man has definitely helped so many people at least get better and prevent them from dieing.

From my own research of dealing with this disease for 6 years, only remission stories I've heard most of the time are from using IV antibiotics... Orals take a very long time, very long!

I had bookmarked quite IV stories over the years that popped up in the news, too bad I didn't save all the stories.

The one that caught my attention years back, was a man who was diagnosed with MS and was wheel chair bound for years!!! Got on a strong IV antibiotic protocol, he was actually back to jogging within months.

I know there's others on this board that will argue and argue saying orals are just as successful as IVs.

Sorry, just not the case. Yeah, not everyone reaches remission using IVs, they can be overrated and not for everyone. But for most part with my own investigating on the subject, more success rates with IV.

Sorry to rehash this, but it's interesting remark you made few months back Jordana, but then post this wondering how this person reached remission. This and many other articles I can show you definitely contradicts your claim that "IVs are equal to orals" statement.

I highly suggest rethinking comments like this when you're unsure and passing them on to other new Lyme patients.

I guess this is why many LLMDs say stay off the forums... I just like showing up from now and then trying to correct people, trying to keep an honest projection of the disease rather than fairy tales told by rife machines and other embellishments, which I might add happen a lot on this board and others...

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/36503?

quote:
Originally posted by Jordana:
IVs *are* equal to orals although it might be helpful to use both to "surprise attack" the little buggers where they're hiding.

The problem isn't IV vs oral -- the problem is that antibiotic treatment does not cure Lyme.

(breaking up the post for easier reading for many here)

[ 12-07-2016, 10:27 PM: Message edited by: Robin123 ]

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SickSam
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quote:
Originally posted by Muscle Car55:
fairy tales told by rife machines and other embellishments

Very interested in what you mean by this. My well-known LLMD (who also has me on IV abx) says rife machines are powerful.
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Muscle Car55
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quote:
Originally posted by SickSam:
quote:
Originally posted by Muscle Car55:
fairy tales told by rife machines and other embellishments

Very interested in what you mean by this. My well-known LLMD (who also has me on IV abx) says rife machines are powerful.
If that's the case, why doesn't any of the top LLMDs from ILADs suggest them. I'm not talking well known... Why aren't they used in Dr. H or Dr. B's protocols for top treatment?

I've seen some of the so called LLMDs in Michigan, I can tell you from the experience they make plenty of mistakes recommending the wrong treatment and aren't completely up to date with the recent information on Lyme treatment.

Point being, just because they've been labeled a LLMD, doesn't mean they're a LLMD!

You need to go on what the top certified ILADs LLMDs are basing their treatment on, most aren't basing it on Rife.

The real Rife machines might of had some type of value to them back in the day by the actual creator, but these small ridiculous machines people are building and hauking?

Just like many of the overrated tinctures... Are just that, overrated!

You're better of putting the money into vitamins to keep your levels up and antibiotics which have demonstrated to kill the persister cells and other spirochetal forms bacteria.

We're going into 2017, if there was an incredible cure like Rife, don't you think it would be popping up more in the news and Lyme documentaries like the IVs/intraveneous antibiotics do.

What was highly emphasized and still is to this day, is IV antibiotics and certain orals like Flagyl,Mino,Tindamax....

I don't know how it happens, but some how, many of you get influenced by snake oil and think it's some major cure, but yet you're still sick. Still goes on to this day!

I'll agree, some herbals have their place, like Dr. H recommends certain ones for Babesia and other coinfections.

Which some like Artemisia have proven to work with studies backing them, but you're still basing other alternative treatments on complete hogwash. The whole Rife thing and other embelished cures need to stop!

quote:
Originally posted by Jordana:
IVs *are* equal to orals although it might be helpful to use both to "surprise attack" the little buggers where they're hiding. The problem isn't IV vs oral -- the problem is that antibiotic treatment does not cure Lyme.

Yet there's people on the forums making these statements like Jordana! Jordana needs to understand, if it wasn't for IV anbitioics a lot of people would still be sick. Including orals!

For many, including me, even orals do put people in remission, but it takes a long long time!

I'm about 90%, but still have lingering symptoms I'm trying to treat based on the persister cell antibiotics recommended by John Hopkins Study. I don't base my treatment on hopes and dreams...

I can tell you from experience, as well as the numerous articles I've read and other people I've talked to, their progression hasn't been because of Rife or any of the herbals they've taken!

A lot of people on here, try and seem they know what they're talking about, but they repeat this rhetoric that is based on fairy tails.

If a lot of this crapped work, it would be in the Under Our Skin documentaries as well as in the news. Instead it's in webmaster sites like Bryan Rosner's which are just based solely on profit. I know because I'm a webmaster!

Yet you see these same people like Jordana, wondering how certain people reached remission with IVs, yet she claims she knows exactly what she's talking about when she makes this statement...

quote:
Originally posted by Jordana:
IVs *are* equal to orals although it might be helpful to use both to "surprise attack" the little buggers where they're hiding. The problem isn't IV vs oral -- the problem is that antibiotic treatment does not cure Lyme.

So um yeah, that's what bothers me on forums... I like calling people out when I see contradictions.


I have a few links to vitamins on my blog to amazon.

quote:
Originally posted by Jordana:
IVs *are* equal to orals although it might be helpful to use both to "surprise attack" the little buggers where they're hiding. The problem isn't IV vs oral -- the problem is that antibiotic treatment does not cure Lyme.

Hey Jordana, didn't Yolanda Hadid say she just reached remission after taking IV antibiotics???

IV antibiotics *are not* equal to orals because of better penetration and yes you do have a chance of permanently curing yourself with IV antibiotics.

There's a lot of people walking around today symptom free because of IV antibiotics, so yes, for some that is a cure!

These people reach remission with IVs and some of you act dumbfounded...

(breaking up the post for easier reading for many here)

[ 12-08-2016, 12:40 PM: Message edited by: Lymetoo ]

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SickSam
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Dude... So much anger. Not everyone is going to agree on treatment.

I see Dr. C in MO, one of the top LLMDs in the world. He has an enormous amount of research behind his treatment protocols.

He recommends rife, and told me to start extremely slowly, or it would put me in bed for a week (of course I'm already stuck in bed though). I thought rife was snake oil too, until he spoke highly of it. So I got a machine literally just a few days ago, and sure enough, it made me herx. I'm certainly not ready to give up abx yet though.

I've been on 3 different IV abx, and so far, orals have actually worked better. I've been on Rocephin, primaxin, and vancomycin. Next is IV ceftazidime. Everyone responds differently.

I've talked to many people who have gotten their lives back from rife, and a few who have gotten their lives back from herbals, and some who have gotten well with mHBOT. I've also talked to many people who did not respond to IV abx, and also many who did respond to them.

Not everyone will agree with me, you probably won't agree with me, and I completely respect that. That doesn't make me angry. We're all different. We all respond differently to different treatments.

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Jordana
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I think if it were true that it was impossible to get remission on orals only then most LLMDs wouldn't be prescribing them. There's no point in feeding people a bunch of pills that ultimately do nothing; it seems to me a doctor with Lyme experience would think the same.

IV's are not the insurance issue everyone claims it to be. If I walked into an LLMD and he said, this is the treatment, I would find the money. There are ways to get IV abx; the reason they're not prescribed as often is because there are additional real dangers to getting a permanent apparatus attached to you that can let germs in.

I understand where you're coming from -- this is thing is nearly impossible to beat and IV has much more reach and killing power to the point remission might be impossible without it. But this is NOT what most LLMD's believe. Dr J DC is pretty famous for his rigorous IV protocol but he prescribes oral-only regimens also. Dr H does orals only unless it's an extreme case.

There are studies that show that orals reach the same concentration in tissue as IV. I don't know, maybe there are metabolites that are lost or some protective action by the liver makes IV more effective overall. But I really don't think LLMD's would be prescribing all these orals if they had no chance in hell of working.

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Jordana
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Oh wow, I missed your second post, didn't realize I was being "called out."

So -- I made that statement because the fact is, antibiotics DO NOT cure Lyme. Remission is not cure; in fact there's no way to verify a person is "cured" of strep throat. We can treat and manage TBDs but...cure. Nope. And LLMD's say that too.

I think it takes all of us a while to realize this crap is with us FOR LIFE and we'll never be 100 percent; not to mention when you have a good day with less symptoms you can't be like a regular person and think, oh! I'm better!

You always have to be waiting, watching and ready to dive in and fight for your life. It's a great and unfair burden.

I personally don't want to do IV abx because they can kill you quick if they go wrong. But if *my LLMD* told me this was the way to go I would do it.

If you're trying to say for the record that the probably-millions of people on oral regimens for Lyme will never get better...hm. That's your opinion.

I'm going to add an edit here -- my experience in treating Lyme so far has been the opposite of successful. I'm a lot worse than I was a year ago.

The responses I've gotten on this board have not been, oh, you need IV abx; they've been that I'm treating TOO HARD.

I've even had someone who was cured of Lyme with HBOT suggest that I was giving myself a neuroimmune disorder and encephalopathy by taking any antibiotics at all.

The fact is no one knows what to do for sure. But whatever it is, if it' worked *even once* for someone else and no one has any better suggestions -- why not rife. Why not ozone. Why not HBOT. Why not bee stings. Why not homeopathy. Why not.

I won't drink turpentine but you better believe I'd do anything that sounded promising if it had any chance of working.

(breaking up the post for easier reading for many here)

[ 12-07-2016, 10:34 PM: Message edited by: Robin123 ]

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randibear
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personally I would never do iv. jus too big a chance for infection.

if there's a chance something would go wrong, believe me, it would happen to me

--------------------
do not look back when the only course is forward

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grakay
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Doesn't look like they did any long term follow up (1 year later, 5 years later, etc) on her after the 18 days treatment.
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Jordana
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Right, because she no longer has Lyme, she'd have PTLDS.
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Muscle Car55
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quote:
Originally posted by SickSam:
Dude... So much anger. Not everyone is going to agree on treatment.

I see Dr. C in MO, one of the top LLMDs in the world. He has an enormous amount of research behind his treatment protocols.

Why do you assume I have so much anger with just a difference in an opinion, it just annoys me when vulnerable people are preyed upon. Sad to say some of you are the vulnerable people.

These machines go for $500+, yet they are probably put together no more than probably $50...

I've never seen or heard of anyone reaching remission with a Rife machine, other than people on the forums. Which I wouldn't trust since anyone can make an account and pretend they actually work.

Post some of this "enormous" amount of research on Rife treating Lyme, I'd like to see it.

Dr. S is one of the most leading microbiologists when it comes to Lyme Disease, if Rife works so well, why hasn't her and Dr. M recommended in killing Lyme spirochetes? She's been trying everything from biofilm busters to cannabis to even Samento.

If Rife machines work so well, how come she's never mentioned it or even touched it? It's been decades now, she never even tried if the machine works under a microscope.

quote:
Originally posted by SickSam:

I've been on 3 different IV abx, and so far, orals have actually worked better. I've been on Rocephin, primaxin, and vancomycin. Next is IV ceftazidime. Everyone responds differently.

Of course they have, that's what works, not Rife. I'm sure most just like you, who treat with rife take antbiotics as well. But they automatically assume Rife is working along with the antibiotics.

quote:
Originally posted by SickSam:

I've talked to many people who have gotten their lives back from rife, and a few who have gotten their lives back from herbals, and some who have gotten well with mHBOT.

I've also talked to many people who did not respond to IV abx, and also many who did respond to them.

Again, I'm sure most of these people took ABX along with Rife, their mistake is assuming it works. How can one distinguish from the other when they're on both.

quote:
Originally posted by SickSam:

Not everyone will agree with me, you probably won't agree with me, and I completely respect that. That doesn't make me angry. We're all different. We all respond differently to different treatments.

That's great, but just be aware you threw away $500 on treatment for nothing. The time you spend rifing, can be spent on cardio and lifting weights.

(breaking up the post for easier reading for many here)

[ 12-07-2016, 10:25 PM: Message edited by: Robin123 ]

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Jordana
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Katina Makris recovered from Lyme using Cat's Claw and rife.

Holly Ahern, a microbiologist, had an ill daughter who was cured with rife. This is part of her story:

http://www.newyorker.com/magazine/2013/07/01/the-lyme-wars

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Muscle Car55
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quote:
Originally posted by Jordana:
Oh wow, I missed your second post, didn't realize I was being "called out."

So -- I made that statement because the fact is, antibiotics DO NOT cure Lyme. Remission is not cure; in fact there's no way to verify a person is "cured" of strep throat. We can treat and manage TBDs but...cure. Nope. And LLMD's say that too.

Look up the word cure...

"relieve (a person or animal) of the symptoms of a disease or condition."

Big word here is symptoms, there's plenty of people that go on IVs and completely relieve their symptoms of Lyme for the rest of their life. So technically they are cured, even though this word isn't thrown around a lot with lyme because it's so persistent.

quote:
Originally posted by Jordana:

I think it takes all of us a while to realize this crap is with us FOR LIFE and we'll never be 100 percent; not to mention when you have a good day with less symptoms you can't be like a regular person and think, oh! I'm better!

You always have to be waiting, watching and ready to dive in and fight for your life. It's a great and unfair burden.

You're wrong, there's plenty of people who have been treated aggressively and have no symptoms. You need to read more! That was the whole point of this thread, that's why I jumped in, because you seem so dumbfounded when you found this post and said "who are these people."

You obviously haven't done enough reading and research if you think "this crap is with us FOR LIFE and we'll never be 100 percent."

quote:
Originally posted by Jordana:

I personally don't want to do IV abx because they can kill you quick if they go wrong. But if *my LLMD* told me this was the way to go I would do it.

If you're trying to say for the record that the probably-millions of people on oral regimens for Lyme will never get better...hm. That's your opinion.

Reason why you won't do it because of the cost. And your LLMD doesn't want to recommend it because many of the top LLMDs that were using IVs were called before the board because they were making insurance companies paying for it. That's what threw up the flags for the CDC.

Insurance companies don't want to pay for it, it's all over money and losing LLMDs license, not safety which many LLMDs will not tell you.

quote:
Originally posted by Jordana:

I'm going to add an edit here -- my experience in treating Lyme so far has been the opposite of successful. I'm a lot worse than I was a year ago. The responses I've gotten on this board have not been, oh, you need IV abx; they've been that I'm treating TOO HARD.

That's common, I had to treat for 3 years of oral antibiotics before I made a turnaround. Did you use the abx that a lot of people have had success with: Flagy, Tindamax, Mino, Roxithromycin, Tigecycline?

A lot of the so called LLMDs at my state of Michigan used very weak antbiotics for 2 years that did nothing for me until I saw the top LLMD in Michigan that recommended the more successful antibiotics that seem to work better statistically.

A lot of these so called LLMDs I've seen do not treat with strong abx, even though they should be. Again, like I said up above, many LLMDs aren't up to date with what works, so a lot of patients automatically assume they've failed with antibiotics.

As the John Hopkins study suggested, there's a reason why certain antibiotics work on persister cells and others are just basically useless.

I wouldn't put all your trust in some of the LLMDs in your state, you need to look into what's working for the top LLMDs from ILADs. Dr. B, Dr. H, etc... And take that information and recommend that to your doctor.

quote:
Originally posted by Jordana:

The fact is no one knows what to do for sure. But whatever it is, if it' worked *even once* for someone else and no one has any better suggestions -- why not rife. Why not ozone. Why not HBOT. Why not bee stings. Why not homeopathy. Why not.

I won't drink turpentine but you better believe I'd do anything that sounded promising if it had any chance of working.

Sad you're passing information like this to others. There's a lot of ILADs top LLMDs that are having a lot more success with certain antbiotics,

while a lot of the smaller LLMDs all over the states are just failing because they don't stay up to date what works and what doesn't.

(breaking up the post for easier reading for many here)

[ 12-07-2016, 10:24 PM: Message edited by: Robin123 ]

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Muscle Car55
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quote:
Originally posted by Jordana:
Katina Makris recovered from Lyme using Cat's Claw and rife.

Holly Ahern, a microbiologist, had an ill daughter who was cured with rife. This is part of her story:

http://www.newyorker.com/magazine/2013/07/01/the-lyme-wars

quote:


Kaleigh turned to alternative treatments often recommended by Lyme patients with similar experiences.

She took herbs—turmeric and ginger, which are thought by some to strengthen the immune system—and she gave up gluten, grains, refined foods, and sugar.

The goal was to reduce inflammation caused by her body’s production of insulin and to inhibit the growth of the bacterium that causes Lyme.

She also began treatments with a Rife machine, an electromagnetic device invented in the nineteen-twenties which emits radio signals that, some researchers suggest, can destroy harmful bacteria.

Although thousands of people are convinced that Rife therapy has helped them with Lyme and other diseases, little empirical evidence exists to demonstrate that it works.

Nonetheless, Kaleigh began to feel better. She still has headaches and severe muscular pain at times, but she returned to Union a year ago and graduated this spring.

She knows that her approach to Lyme disease is controversial and acknowledges that the improvements might be due to her dietary regimen or to Rife treatments or to a placebo effect.

She doesn’t mind; after enduring such pain, she has found that fine points don’t matter.

Right from the article Jordana...

"little empirical evidence exists to demonstrate that it works."

No where in the article did it state the rife is what cured the Lyme in this patient. This is a prime example of how Lyme patients like you jump to conclusions and twist things, but what did the article say...

quote:
She knows that her approach to Lyme disease is controversial and acknowledges that the improvements might be due to her dietary regimen or to Rife treatments or to a placebo effect.
She was doing more than one thing... It's hard to pinpoint what actually worked, you jumping to conclusions it was solely on Rife when she was probably on strong Probiotics, Cats Claw, Turmeric, Gluten Free Diet, and working out.

You have no clue if being on antibiotics for a long time, then going off the antibiotics is what actually helped her. Sometimes that works, allowing your immune symptom to kick in.

What they do Doctors say, 70% of your immune system is based on the flora in your gut.

Yeah it's hard to reach remission when we're constantly bombarding your body with antibiotics, that's why it's good to go off of them for a period of time and see where you stand.

I've gone up to 6 months of being off antibiotics. It's great to do this and then get back on antibiotics, it can allow persister cells to come out of hiding, then go back on antibiotics to kill them. Also gives you liver and kidneys a break.

You make the mistake of blaming antibiotics and more claiming the rife machine is what worked. Antibiotics is what helped save this girls life, not Rife. If you did it the other way around, rely solely on Rife from the get go, not antibiotics, she would be in really bad shape!

Antibiotics are what knocks the infection back 99% of the time in Lyme patients cases, then allowing your immune system to take over then maybe trying other things.

Probiotics alone could possibly cure Lyme if you do it at the right time after taking antbiotics...

Plus Turmeric, that stuff works, studies shows it works preventing ALS and other brain wasting diseases. But that's not what were talking about, we're talking about Rife, which you claim is what cured this patient....

Again, jumping to conclusions, this article wasn't titled cured with Rife!

I'd say herbals work, but again they are a bit embellished, when it comes down to it, antbiotics have more of a success rate than any treatment still to this day, that's all I'm saying.

quote:
Dr. H told me that he has seen more than twelve thousand patients, all of whom have a tick-borne ailment. Whenever possible, he avoids antibiotics.
Also, I know Dr. H means best when he puts out information like this, but when it comes down to it, he's still treating mostly with antibiotics. His recent major protocol involves Dapsone and 2-3 other antibiotics at once.

I read his Facebook page every month and read what other patients are saying on the forums. Herbals tend to be more used for the coinfections like Babesia. It's very easy to read this and get confused what actually works the best when treating lyme.

Anways, I hope this clarifies things for others.

(breaking up the post for easier reading for many here)

[ 12-07-2016, 11:35 PM: Message edited by: Robin123 ]

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SickSam
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I know a young lady in my small town who was recently diagnosed with Lyme. She is treating with only diet, nutritional supplements, and rife. She's slowly getting better. She's never taken an antibiotic.

I know another lady in my town that was cured of Lyme using a rife machine, but she did try antibiotics first and had no response to them.

Have you ever researched PEMF devices? They're FDA-approved for all kinds of stuff. Even to treat brain cancer. They're similar to a Doug Coil machine. That research is what made me take a second look at rife.

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Jordana
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I actually agree with you. I've believed this all along, that when people suddenly turn the corner due to alternative treatments they've *already* taken truckloads of abx. So we really don't know. Just like we don't know if cat's claw really works or japanese knotweed or anything else.

I've had the thought that after decimating your system with abx for a couple years, alt med comes in and cleans up the destruction.

But MC, like everyone else, I can only guess. Rife might work. It might not.

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Jordana
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There's also this ted talk about using frequencies for cancer:

https://www.youtube.com/watch?v=1w0_kazbb_U

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Robin123
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Folks, a couple things - 1st, alot of people here cannot read blocks of text and need us to type no more than a couple lines at a time, like probably something like no more than four lines at a time, so please remember to break up your text!

2nd, this board operates based on Terms and Conditions, which are found below. T&C #4 says that people have a right to post opinions here without being attacked for them. Please keep in mind that none of us are doctors here.

Now, this is me speaking as a Lyme patient - I've gone to a lot of Lyme support groups. What I've witnessed all the time is it's different strokes for different folks, so to speak, regarding what treatments work for people. And sometimes it's also the timing of their use as well.

I've heard people at support groups say they only respond to Rifing. And I've heard others say they never have or have gotten sick from it.

I've heard plenty of people say orals worked, and plenty of people say they needed IV.

And I've heard Lyme doctors say the same about their patients, that some require IV and some can make it with orals.

I think this is a plural universe when it comes to treatments, since we're all different, and the bugs we have are all different. One size is not going to fit all.

And we can't prove everything - a lot of this is based on whether we feel better from trying a treatment.

And of course, your point is well taken about if you mix treatments, you may not be able to tell which ones are working. It's why I always try to test one treatment at a time myself, to see if I can tell what something is doing.

So having made my remarks as a patient, I'd like to return to my moderator hat, which is to remind everyone to please read the 4th Terms and Conditions again,

because this board operates on the basis of allowing people to discuss their treatments without being attacked for it.

If you are feeling angry with the moderators, please send us a private report of a post, since one of the board rules is also not to attack the moderators, who are trying to do their best here, and who follow board rules.

We don't act independently, but as a group, so we will collectively discuss complaints and come up with what seems to be the fairest arrangement.

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Muscle Car55
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quote:
Originally posted by SickSam:
I know a young lady in my small town who was recently diagnosed with Lyme. She is treating with only diet, nutritional supplements, and rife. She's slowly getting better. She's never taken an antibiotic.

That's great SickSam, but for the most part, antibiotics statistically speaking is what works most of the time fighting back the infection from the get go.

Stories like Amy Tans are few far and between!

They're there, but people relying solely on Rife and these other alternative treatments is very scary.

IV antibiotics and orals have had a better record.

I just hope a lot of you aren't being taken for a ride with rife and other alternative treatments, a lot of the recent stories of patients going over to Germany for a cure are starting to pop up in lyme articles I'm reading.

People are getting desperate! Again, don't you think if Rife worked even a little bit, Dr. S would be testing it under a microscope and posting the videos. Along with other LLMDs doing tests...

Look, I'm the first one that looks into conspiracies, I do think breakthroughs in curing disease are held back from time to time. But just not enough evidence for Rife to be one of these...

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Robin123
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Musclecar, you're entitled to state your opinions. However, it's your opinions and you actually can't make others wrong if they experience benefit from a treatment and they have their opinions about their experience.

I've heard lots of people say Rifing helped them. You bring up an interesting point about Dr S and Dr M not testing Rifing.

If so, I encourage you to go ahead and contact them to have a conversation about it and see if they would do some microscope testing with before and after Rifing.

And likewise, if anyone has some hard data on how Rifing affects spirochetes, bring it on!

I think all I'm saying here is you or anyone can have an opinion, but you can't make someone else wrong for their experience if they feel they are benefiting.

That's what T&C #4 is referring to and I would encourage you to review it again because that's how the board is run.

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Jordana
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I'm okay over here Robin123. I don't feel attacked.

MC for the most part I agree with you also about rife. The only *proven* treatment for Lyme is antibiotic therapy and everything else is a what the hell, maybe. But there IS a maybe.

I'm also glad you don't think a cure is impossible. Haven't heard that too often these days.

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Robin123
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Jordana, thanks - glad you don't feel attacked.

Just be aware that when you bring up all your various discussions about treatments, whether proven or unproven, a lot of discussion may get stirred up.

And I'll repeat what I said above, which is, different strokes for different folks.

Adding onto that my observation that a lot of people can and do say they were cured by some treatment, but it is my understanding,

both as a patient and as someone who watches the science of the field, that no one really can make that statement about Lyme and co-infections past the first initial weeks of exposure and triage care.

So just for you to know, anyone can and does, make statements out there, but no, no one can say they're cured,

and it is my opinion, speaking for myself here, that you may not need to question everyone's statements, because frankly, we don't at this point in time have solid proof of fixing these infections.

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Robin123
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Musclecar, one more comment, speaking as a Lyme patient - re your statement about antibiotics, a lot of people can't take them. I'm one of them - I'm allergic to most of them! Even doxy.

So we do other things. Many people take herbs instead. Not me, I'm allergic to those too, mostly. I do very well with natural anti-inflams, and that's me.

So there really is a plural approach to treatments.

If antibiotics work for you, then you are welcome to discuss your experience, and more power to you - you have just as much a right to treat and feel better as anyone.

Just none of us can say what will work for the next person! Like mangosteen juice works to stop my Lyme eye symptoms, but I have heard back from others that it doesn't for them.

This is the nature of the beast here. Hope this makes sense to you.

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Jordana
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[Smile] . Actually that was the point of my posting the article; woman is cured of chronic lyme with 18 days of IV rocephin -- to initiate discussion.

I'm fine with people questioning what I say -- we have to learn about this stuff from each other because there's no other way to do it.

I think we actually have better proof, from what I've read, of *not* fixing these infections but I'm happy to hear better news.

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Robin123
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But do you know the timing of the IV rocephin? Was she newly diagnosed? Because if so, sure, people can treat in the beginning and knock out the infection.

But I don't think we have science on whether IV rocephin can knock it out for good later on. Does anyone know of any science saying as such or has anyone had conversations with any Lyme doctors who know more about results?

And if you do, please say the substance of the conversation without mentioning any names.

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Muscle Car55
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Not sure how one would really feel attacked, especially since we're just typing. I may come off strong, but I can tell you I'd never send a hurtful message to anyone on here.

I just think people buy things when they're put into desperate situations, which isn't emphasized much on this board, along with the controversial treatments that a lot of people get taken for.

quote:
Originally posted by Jordana:
I'm also glad you don't think a cure is impossible. Haven't heard that too often these days.

Come on though, a lot of exciting breakthroughs have come out in the past decade. Dr M's breakthrough on borrelia inside nematodes in the brain and it's relation to brain wasting disease. First antibiotic that will be released to attack biofilms soon. John Hopkins work on persister cells.

We may not have literally felt these breakthroughs yet, but they've accomplished more in the past few years ever in Lyme history I'd say.

The truth is going to set us free and right now, no matter what people say, science is more in favor of a chronic infection than some madeup autoimmune disease by the corrupt CDC.

[QUOTE]Originally posted by Lymetoo:
Muscle Car ... Have you not noticed that everyone posts links to Swanson's Vitamins, Custom Probiotics, etc? That is allowed because they are NOT making money off of those sites.

YOU ARE MAKING MONEY OFF YOUR SITE!
[QUOTE]


-----

It's too bad how conservative the internet has become, back in the day link in a signature was no big deal, but it's your forum and you're allowed to do what you want.

I just don't think it's fair when other links are posted selling things that are very controversial, meanwhile my site gets that ban hammer just for sharing a link to Amazon.

[ 12-08-2016, 12:50 PM: Message edited by: Lymetoo ]

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Robin123
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Musclecar, sure, you can critique treatments, but what I've been responding to here is that, as a Lyme patient, I have witnessed people swearing by their Rifing as their successful treatment.

So whether it's Rifing or something else, as in fill in the blank, I don't think that we have the right to knock someone's else's treatment if it's working for them.

That right, to post one's treatment experience, without being attacked for it, is part of the Terms and Conditions #4, which is how this board operates.

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Jordana
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Yes, it's in the article. The story is that she had Lyme 15 years prior which was treated, then came down with severe encephalopathy. They retreated with IV penicillin, sorry, not rocephin, and she was in remission in 18 days.

This is why MC was arguing with me because he's saying in some cases IV can work that well and that fast: I posted the article because EVERY case on pubmed describes these miraculous turnarounds.

I was making a different point, but I think IV and oral are essentially the same treatment; MC does not think so.

About the vitamins, dude, you're on the wrong thread [Smile]

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Lymetoo
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Muscle Car .. No moderator makes any money off this site. I just want to make that clear. This site barely has enough money to keep it running, as far as I understand.

None of the moderators "own" the site.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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--and none of us are paid--

I think everyone knows we are strictly volunteers.

--------------------
--Lymetutu--
Opinions, not medical advice!

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randibear
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yes and you're very much appreciated. I would never do it.

I'd be hacking people off right and left!!!!!

--------------------
do not look back when the only course is forward

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Lymetoo
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Thanks, Randi! [Big Grin]

PS .. Not a good plan to bash the moderators.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Robin123
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Jordana, that is amazing, a turn-around like that in 18 days - my experience here is that it can take close to a year for chronic patients to turn around on IV rocephin.

Would be curious to hear follow-up on someone like that, as in, how are they doing later on...

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Jordana
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That was my point, Robin, agree. [Smile]
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bluelyme
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quote:
Originally posted by Jordana:
There's also this ted talk about using frequencies for cancer:

https://www.youtube.com/watch?v=1w0_kazbb_U

in this anthony holland has video of a protozoa exploding with rife ,,,i have not been this lucky yet with my microscopy but i did a do risk iv abx every week in hopes of killing a few more ketes .
i risk with stings every week in hopes of killing a few more ketes ,

thank god for lymenet id be more dying w/o

--------------------
Blue

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Lymetoo
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--on a side note .. Bryan Rosner recommends in his book on Lyme and rife that you not take abx at the same time as rifing.

You want to catch the critters off-guard.

--------------------
--Lymetutu--
Opinions, not medical advice!

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