randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I met a woman this weekend with lyme. she has been on abx for 10 years, only occasionally with a break.
I can't believe this...10 years. surely she would have been cured. she believed lyme patients must be on them for life. I'm not sure I agree with her.
how long can you take them anyway?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Many of us here are basically in the same boat, though, with inadequate approaches (for whatever reasons).
Antibiotics cannot and never will cure lyme. It's just impossible. The science of lyme, how it works makes that very clear. Dr. B's treatment plan has always made that clear.
All the LLMDs and LL NDs who have written articles and books make that crystal clear, too.
The exceptionally LL journalist, Pamela Weintraub, ahs also made that very clear in her posts, blog, articles and book.
Treatment must be various agents, various KINDs of agents.
If someone does not get the right combination of Rx, yes, it can be insufficient dose / Rx for lifetime to manage symptoms.
Talking here just about lyme [although lyme is never alone, other infections are always along for ride and antibiotics often may not at all even affect some of them].
Antibiotics, alone, are never - ever - going to work for lyme, though. Antibiotics never even touch forms of Bb other than the spirochete form and abx can make the spirochete go into cystic form, causing, perpetuating chronic lyme.
And no single Rx of any type, either.
It has to be a combination / rotation approach with a variety of Rx kinds, according to what the particular person has . . . and what works for them.
And support for liver / kidneys, adrenal, nerve tissue and heart are also key to treatment success. Probiotics / Prebiotics and foods that help replenish gut flora, etc.
[Where one might choose herbs over Rx, the same kind of approach, though: combination / rotation . . . direct & assertive action along with support measures. Whatever the method, it can't be half-baked, it has to be extremely well thought-out in every step for as long as needed.]
Inadequate approaches will need to go on just about forever, though - regardless of the kind of medicine used.
And even with the best LLMD &/or best LL ND, and the most well thought out plan over a few years, some patients may require treatment on-going.
Still, anytime there is one single antibiotic relied upon for any length of time, that is not addressing the issues but simply helping keep the fires low . . . and, for some, due to access to proper doctors / treatment this has to be an option for them in order to manage.
I talked with someone with similar method [at that time she had been on doxycycline alone for ten years, each time she went off, it all just exploded]
and it was just the best she could do. She knew, though, that it was not ever going to address the foundation issue, just keep her in a less painful limbo.
It's important not to cast judgment, though, in any way whatsoever as if that's the best they can obtain / do, and it has some value to their life, they are making the best choice given the available options.
One thing, though, is that many might be doing this and not even know the science of lyme, the complexity, the requirements . . . or be familiar with a wider range of treatment options that might be available to them.
Many, though, have to consider the cost of a roof overhead, food and then may have next to nothing left. That's is the reality that takes a lot of courage to just do the best they can with what they have and move forward with a happy face out in the crowd.
That may be the case with the woman you just met.
If you might see her again, it would be nice to have printed out for her a few links just in case she might appreciate some information that she might not have seen before. Next post:
[ 10-09-2016, 03:32 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A few basics you might share with her, no conversation needed, just hand them to her with a note something like,
"Just in case these links might be of some help. Good Luck."
ILADS - International Lyme & Tick Borne Diseases Society
About: Through Education, Awareness, and Action, ILADS promotes understanding of Lyme and its associated diseases and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.
The Lyme Disease Association (LDA), an organization which expanded its focus nationally 17 years ago, is dedicated to Lyme disease education, prevention, research funding, and patient support. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- From LL author who has managed to overcome lyme, (she and her entire family were face-to-face with it).
For patients with tick-borne diseases, the path to health can be confounding. Combining integrative and conventional approaches may be the best way forward.
The groundbreaking, award-winning investigation into Lyme disease—the science, history, medical politics, and patient experience—now with a brand new chapter.
See all THREE posts here by Pamela Weintraub (who is a LL journalist who recovered from lyme - and write about her entire family dealing with it in "Cure Unknown" book ) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One last page for her information packet -- if you have a nice cheerful color folder for these, even such a simple, thoughtful touch might really make her day & elevate the pages to that of a real gift and make her reading more joyful:
How to find an ILADS educated LL professional in complementary fields (naturopathic, acupuncture, etc.)
Also includes article and book links by all kinds of LL authors - and information about herbal and nutritional supplements. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
it seemed she had tried many regimes but every time they tried to increase the abx, she became much more ill and finally became resistant to many abx. she stays at low dose and says she is able to at least function semi-normally.
I think there are many people like this. well at least she has a dr who is willing to prescribe her abx. some would have stopped her treatment.
she insurance and so far has not questioned her. .
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Antibiotics, alone, are just not going to do it, ever. Even if the dose is increased. Never going to work.
You say: " . . . at least she has a dr who is willing to prescribe her abx . . . " (end quote)
Actually, the doctor sound totally incompetent if relying solely on antibiotics and can do her great harm in the long run. This is about far more that just taking antibiotics.
Sounds like she has a doctor who is not lyme-literate - nor TBD-literate - and may not be fully informed with liver support methods, either.
Yet, if she thinks insurance is going to cover everything, that's also a dangerous way of thinking. The kinds of medical options that medical insurance covers misses the mark by a long shot.
She might really appreciate this 3-page links set above. Could save her life, actually. Hope you have some way to get this to her.
We know better, so it's up to us to share the information with those who may not have had the chance to see the details.
Antibiotics, alone, simply cannot treat lyme. They can make it eternally chronic. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please add this to the information packet (that I hope you can get to her):
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yikes. thanks. I've known people who swore they got better on abx, but who am I...
she goes to my pharmacist so I'm pretty sure I can find her somewhere.
I recommended books, cowden, Byron white, and stressed the importance of getting a really good llmd, probiotics, etc. and of course this site.
I can lead a horse to water but........
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
More than 10 years ago, when I came to this forum first, there were quite some people ALREADY believing they had to REMAIN in abx forever.
They accepted that more than a decade ago.
There was an active lady posting under Californialyme, that used to come here, and she had been on abx for about a decade at that time (if my memory is good), believing she had to be on them forever.
I never agreed with that view, as for me, abx were designed to be used short term, and will never kill the whole infection.
And if I took abx forever, I think I wouldn't be here to tell you the story, as my GI tract was my weakest part, for decades before lyme.
It's ultimately the job of the immune system to deal with chronic infections, not of drugs designed to act short term.
I'm sure there are more people that are treating lyme with abx for longer than 10 years and not cured.
And many people in remission will need abx long term again if they get bitten again, and again, and again.
Killing-only-approach will maybe help a few to get lyme dormant.
It used to happen more in the past (maybe due to less coinfections, or due to less toxins).
I don't see how I would have made it using the killing-only-approach.
Dr. K. and dr. Rau in Switzerland, do not believe that either. They are more on the idea of building the body back to health, cleaning toxins approach.
Only then, the immune system will kick in one day again, and the next tick bite (or bites), you may manage to get out of lyme better and avoid future relapses.
Just imagine if mosquitoes also could transmit lyme. Or unprotected sex. Or blood transfusions. Or vaccines. Why not?
They need to use animal or human fetuses to breed viruses in vaccines. If they can't find lyme in us, how would they find lyme in the monkeys, dogs, chicken, cows, humans that they use to make vaccines??
the only way out, long term, I believe, is in building back your immune system.
for that, there is no short cut: you need clean water, clean food, clean habits, exercises, build the gut, the right supplements, minerals, support detoxing in the best way possible, non-stop until you get better.
And then after, so that you don't fall ill again.
That is my view. I'm more than7 years lyme free. But I still fight candida, in the coldest months of the year.
Until I don't solve that problem, I will continue trying to build my immune system better.
All newbies think killing-only with aggressive treatment is the fastest way to go. I also did.
We keep learning, every day.
Posts: 6199 | From Brussels | Registered: Oct 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
sad but sometimes I wonder if they, government and big pharma, have a cure and are not telling us.
my paranoia is showing.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A "cure"? they could not even find their way out a parking lot.
Neither governmental health agencies nor pharmaceutical companies have ever given me reason to think they even understand the most basic fundamentals about lyme. I stopped looking to them a long time ago and don't think there will ever be a time when I could trust them in the future.
First, they don't have the capacity for such complex thought as lyme requires.
The IDSA, CDC, NIH, and similar groups have proven this time and again by ignoring the thousands of pages submitted by Lorraine Johnson & in ignoring the stellar points of Pamela Weintraub's speech to the IOM in 2010.
Second, they really just do not want to learn about or address the underlying issues to find resolution as they can make money with masking agents for the lifetimes of all patients.
The good news is that, as patients - patients with intelligence and the ability to look to others who ARE up to the task [ILADS] - we can face and end our co-dependence on the traditional medical system where it no longer works. And there is much we can do for ourselves, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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me
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posted
Killing/bringing down the bacterial load, healing/building up the immune system and detox seem to be keys to remission. I think some people's bodies are just better equipped to go into remission or lucky or found the "right" mix of things to do that work for their own bodies.
It also may have to do with the strain and virulence of the bacteria. Who knows?
I, like Randibear, wonder if someone does know of a cure out there just like many believe there is a cure for cancer being withheld. I don't thinks it's paranoia though. I think it could be the sad truth. Just look at what the IDSA authors did as one example.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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bluelyme
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Member # 47170
posted
Imagine if the curza 99 worked and had a price tag of$xxx,000 per year ....how did bush cure himself ? ...dr j uses amox for ever ..but listening to tf..only flagly or tinidazole actually do killing ..
.and they are carcinagenic ...my cousin treated for 1.5 years and thinks he is cured ...he has polyps and nodes on his lung but thinks lyme is gone
...i am putting a lot of stock in bvt because i see two ladies brought from the brink who work now ...i am using abx and herbs only 1 yr in ....is life worth it if we cant eat or see the sun ?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
"Me" said:
"Killing/bringing down the bacterial load, healing/building up the immune system and detox seem to be keys to remission.
I think some people's bodies are just better equipped to go into remission or lucky or found the "right" mix of things to do that work for their own bodies. "
I fully agree with you (1st paragraph).
2nd paragraph, I agree only partially.
There is no luck in finding combinations of 50 treatments a day (minerals, good oils, hormone treatments, right killers, right binders, acupuncture points, which teeth to treat, all organ support homeoapathics, herbs, massages, infrared frequencies, rife frequencies from my KMT...)
In the worst times during lyme, I was on about 60 different treatments A DAY, that kept varying almost daily either in amount or in species (I shifted homeopathics, killers, binders, minerals, acupuncture points, programs, frequencies, etc on a DAILY basis).
The only way to heal for me was a thorough energy testing of all treatments, in combination, until I canceled most symptoms. And that was done daily, for months, non-stop.
Until I stabilized, then I tested a bit less, took less supplements /herbs / machine treatments until remission. Or until next relapse. Or next tick bite.
How can one be LUCKY to be tuning 50 to 60 treatments in a day, and keep changing these treatments almost on a daily base until one reaches remission, for literally months or years?
I don't see LUCK in that, if you see what I mean.
A bit of luck, yes, but mostly it was simply 'measuring' what, when, how much, alone or combination, until I felt symptomless.
That was done every single day, religiously. Everyday, I looked towards feeling symptomless.
I tested everything I could until I felt I was lyme free.
Was I lyme free? Of course not, but I felt so, if I did the 60 treatments a day, each in the right time, right amount, right combination...
I've been bitten so many times, that I don't think it matters whether one strain is more virulent than another.
There are strains and strains. Once infection finds its place in the body, and colonizes it, you got to dislodge it. It takes time to clean the infection, no matter which.
You can say my body could be stronger than most. Well, that COULD be.
But I still fight candida, chronic candida, even though lyme is long gone. It's been about 30 years of fight.
My body is not strong enough to fight chronic candida during winter. My immune system is then far from being perfect.
Candida and cancer walk hand in hand, even the most ignorant drs start to realize that.
You will see that when lyme is gone for many people, they will still fight some type of chronic infection (herpes, or candida, these are VERY common, if they do not fight cancer).
All of these problems are a sign of a defective immune system.
In my belief, once one caught chronic lyme, that is an easy infection for most people to fight, well, it means the person's immune system is in deep trouble already.
I see people being bitten by dozens of ticks and getting nothing.
Even I get bitten now, my daughter gets bitten, and we get nothing any longer.
It's no surprise that people with lyme will 'get' cancer. Or that they will succumb from a lung infection or their bodies get screwed up with a vaccine.
Unfortunately, our immune systems are all screwed up, some worse, some better.
Cure for cancer, there are certainly 'cures'. Like there are cures for lyme. There are so many examples of cures, you can't deny them.
You can call that lucky, if you try about 10 treatments, and tune them by luck, and find something that works.
I don't call luck when we have to tune hundreds, even thousands of treatments to get well (and finally get well). And do that daily, for years. Nope. There is no luck.
I always keep telling you all: I don't know how you guys find your way out of chronic lyme, multiple reinfections without any type of energy testing. I would never ever be able to get out, just counting on luck.
A guy that takes about 10 to 20 different abx and gets better, wow, that is LUCK! But in my case, in my daughter's case, there was not much luck involved in the choice of treatments.
Posts: 6199 | From Brussels | Registered: Oct 2007
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me
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posted
Brussels, I mean this in the most respectful tone since sometimes the tone can get lost in writing. So, respectfully:
Anyone who goes through Lyme or chronic illness is not necessarily "lucky." My point was that sometimes there seems to be rhyme and reason, and other times there seems to be no rhyme or reason. As you said, maybe some people's bodies are stronger than others. Who really knows?
Am I lucky for all the hell my body has been through? I could go on and on, like many of us, about all the excruciating pain and mutltitude of treatments I've had to and continue to endure. I could go on and on about being undiagnosed and misdiagnosed for over ten years and seeing thirty to fifty doctors while I lost loved ones due to this disease.
So am I lucky? No. Definitley not in many senses.
Now, this part is somewhat relevant to the aforementioned, for me personally. I am lucky to receive treatment (although it is miserable), because many people aren't able to access it. And even with all the hell ive been through, Lyme has taught me many miserable, yet valuable life lessons. So I guess I'm lucky and unlucky in that sense.
Would I go back and change getting Lyme? I don't think so. I hate it. But I love the good things it has brought out in me. Although I was already very compassionate and advocated for my principles, it has helped me grow more compassionate and fight for the needs of people even more so than I used to, and Ive changed some lives because of it. So I'm lucky that I'm an even better person and am able to help others in different ways.
Some people may think that's bizarre. That's fine. To each is own.
All the best, "Me"
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
4 years was enough to deplete any good bacteria I ever THOUGHT of having in my gut.
The ramifications of that destruction is not fun.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bluelyme
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posted
Can you elaborate 22? ...you were on nystatin and pbx ??? did it cause mast cell histamine sctuff?
Im sure something eas lost in translation with brussels .i think she may have meant the fourtune of finding the right treatment in the trial n error that is our unfortunate plight ..and the advantages to tuning in to what the body need and when ..especially as with the pain i spend a lot of time tuning out symptoms ...maybe jemsek is on to something with 3 weeks on 1 week build ?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Brussels
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posted
Me, sorry if I sounded 'angry'. I wasn't!
I was just stating, for those who think you that finding right treatments is a matter of luck.
It isn't. Some luck, yeah.
But mostly, there is NO WAY to find out right combinations of ALL we need ...
- it means hundreds to thousands of treatments LITERALLY for months or years -
... in order to get well from multiple re-infections and relapses.
Lucky is a guy that finds his healing after about 20 different drugs.
ONLY 20 DRUGS, that would be awesome, if we all went on remission with a few drug combinations.
20 drugs, even it taken for years, is very few, when we know what we do to get well.
It is possible to do trial and error with a couple of dozens of drugs (less than 30 drugs).
But it is not any longer physically possible to do trial and error when you need hundreds of substances / treatments in a month, for example...
and that these treatments need constant adjustment...
I meant only that.
No one is lucky to get lyme, or candida, or cancer. Your're right.
But as with you, I today think I gained more DUE to lyme, than I lost. Due to lyme, I learned the importance of energy testing.
That strict diet is essential sometimes, for healing.
That detox and binders are essential for quality of life.
That homeopathy saves lives, even more than drugs.
That I cannot trust our medical system, not even our LLMDs, because their hands are bound by laws and fear ...
...(due to our pharma - corporation totalitarian governments), ...
... so they can't help us in every situation, even if they want to.
In the end, I learned to trust my own feelings and choices for good treatments. I also needed help, of course.
In that, I think I was 'lucky'. It was a painful learning process, but the thing is that I don't feel like begging for help any more, when I know that help won't come.
some people think abx is the only way out. they feel pity for themselves when they cannot afford abx, or when drs don't provide them with abx.
Yep, they are right.
but there are other ways to get out of lyme. even the best LLMDs have trouble getting people healthy. It's not only the money issue. And certainly not a matter of only luck (to find right treatments, I mean).
My post was just to say: try energy testing. Of course, not all energy testing is good, it ALL depends on the practitioner. But I swear that energy testing helped us immensely, to get out of lyme.
Posts: 6199 | From Brussels | Registered: Oct 2007
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me
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posted
Thanks, Brussels. No worries at all. I just wanted to clarify where I was coming from, and your previous post helped me see where you were coming from.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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desertwind
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posted
Guess it depends when I start the clock. Anywhere from 4-12 years but the longest I have been on abx.'s without a break or pulse was about 1.5 years. Last 4 years with Dr. H.
I am in remission and only take abx.'s for new bite or for an occasional flare. I address it from a very comprehensive perspective including herbs, immune support, detox, diet, gut health, mind/body ect.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Can you elaborate 22? ...you were on nystatin and pbx ??? did it cause mast cell histamine sctuff?
- I would venture to guess that either the Lyme or the destruction of my good bacteria caused the MCAS. It's a major issue. MAJOR.
I took Nystatin nearly the whole time, which may also be linked to leaky gut, according to one study I read.
I took probiotics, though not the best. Most of the time I was taking PB8. It's too weak, in my opinion.
I followed a very strict anti-yeast diet while on antibiotics and many years afterward.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bluelyme
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Thanks 22..dw and brussels ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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me
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posted
6 weeks. Then found a new LLMD and have been on abx treatment under him for a year. So 1 year and 6 weeks. Progress has been made.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
I was on and off abx from '97 till about 2007. Ended up much worse off.
But I have a good friend who has been on abx close to 20 years and, despite many problems, remains pretty functional. This person crashes when going off.
It seems to be a roll of the dice.
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I just wanted to clarify where I was coming from, and your previous post helped me see where you were coming from.
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